I Am An Autism Parent

I Am An Autism Parent
Tim Tucker
A M A N AU T I S M PA R E N T
For Jonas and Eli Every day with you is a gift beyond words.
and In memory of Mamaw You taught me everything I need to be an autism parent.
Table of Contents
I have a diagnosis
Our diagnosis story A new journey begins
1
2 5
I dont think I can do this

Youre not ready, and neither is anyone else A space to grieve All you have to do right now is breathe We are terried of what we dont understand A journey of revelation
6
7 9 11 12 15
I am going to be OK
You are going to be OK Let the baggage go You dont need to be perfect or even know what youre doing The 1% Rule You have my permission Amazing Grace
16
17 18 20 22 24 26
I am going on an adventure
Welcome to your epic Believe that we can be heroes You will be forever changed Your roller coaster of emotions Go where the road takes you
28
29 30 31 32 33
I am strong enough
Climb the mountain Everything in your life has led you here These too shall pass How long can you carry your child? You are enough
35
36 37 38 39 42
I will be open to this journey

The journey of possibility The journey of acceptance and love The journey of opportunity The journey of grace The journey of wonder
43
44 45 47 48 52
The journey of discovery
54
I am now part of a community

You wont have to do this alone The Autism Underground The Autism Family We are surrounded by heroes The miracle of eating Build your village Believe in people
55
56 57 59 60 61 63 64
I accept my child as they are

Liberated from normal Making the right decisions for your child See the possibility Acceptance and hope The same today as yesterday Prepare a way for them My moment of revelation Celebrate each wonder and victory
66
67 68 70 71 72 73 74 75
I accept myself as I am
Be honest with yourself Its not your fault Its OK to make lots of mistakes The new abnormal Made whole See your life as it is and accept it
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77 78 80 81 83 85
I choose love over fear

We are all afraid Dont choose out of fear Name your fears Your life is uniquely yours now Tell a new story A brave new hope The moment I nally believed
87
88 90 91 93 94 95 98
I am as ready as I need to be
We learn as we go Your best will be enough
101
102 104
Always be open to beauty and hope What my hero taught me about being an autism parent No matter how hard, you will nd a way Let go of needing to measure up Your child will be your greatest teacher
105 106 109 110 111
I am a superhero
The source of our superpowers Why you are a superhero now How heroes are made The path of the superhero
112
113 115 116 119
I am an autism parent
Remember Who I have become The Autism Parents Vow It is time
121
122 123 125 127
Your Big Game Speech The Stu at the End

Now what?
128 132
133
A note about language Credits Version and Copyright About the Author
135 137 139 140
I have a diagnosis
Our diagnosis story

I can still remember what Diagnosis Day felt like. Those raw emotions have never left me. I sat on the doctor's oce couch next to Mary, her right hand in my left and Jonas on her knee
I wrote down everything he said as if my pen could save us from the chaos, as if maybe I could draw some road to a future we could no longer see.
moaning, shaking, overloaded from the evaluation. She bounced him in her lap trying to calm the chaos raging inside each of us. My right hand, clammy and shaky, rhythmically gripped and released the arm of the faux leather couch as the doctor spoke, his words distorted in my ears as if I were underwater. I dont remember any words other than autism. Through Jonass mournful chanting, I do remember the calm, even tone of the doctors voice, the kind of voice professionals have in hostage situations or when trying to talk someone down from the ledge. And his eyes, deep, knowing, understanding, full of compassion as his ngers traced the clipboard in his lap. The detached part of me sitting in the opposite corner wondered, how many times has he sat across from parents and told them this same news? I don't remember the exact rst words out of my mouth after hearing the diagnosis, but I know the meaning behind my question. Its the same question we all have at the beginning. What do we do now? I wrote down everything he said as if my pen could save us from the chaos, as if maybe I could draw some road to a future we could no longer see.
I have a diag nosi s
I barely remember saying goodbye to the doctor and leaving his oce. I only recall ight, the frantic need to get out of the building right then or I was going to die. I can still feel the sting in my hand from banging my palm on the gear shifter in the car. I can see as
He's the same today as he was yesterday... He is our beloved son, and we will do what it takes.
much of the way home as the parking lot, but nothing about the drive itself. The road ahead was as yet unknown. After we got home, I wandered around for a while in our backyard, lost and angry and feeling sorry for myself, probably justifying my self-indulgence by saying over and over how unfair this was to Jonas. I let dread, fear, despair, and hopelessness crash through me like terrible waves. I spat through my tears. I ailed my arms without purpose at everything and nothing, like a man desperately trying not to drown. I remember saying to myself that I was going to kick autism's ass, not having any idea what that really meant; it was just the rst thing that popped into my head. Then at some point as the clouds yielded a little that afternoon, I could feel something somewhere right under my sternum harden like a st. It didn't feel like anger or hurt or some odd form of grace. I suppose it was pure, primal resolve. Love for my beloved son rose from within and overowed my heart. Words welled up inside me. And I think these words saved me. He is the same today as he was yesterday. He was wonderful before he received a diagnosis, and he still is. He is our beloved son, and we will do what it takes.
On Diagnosis Day, that was enough for me. I went and held him, rocked him, and kept saying over
The morning after the diagnosis, the sun still came up and a new day began, as it has every day since.
and over again, Everything is going to be OK. It was a mantra at least as much for my benet as for his, and I still say it often when it's hard to nd our way. The morning after the diagnosis, the sun still came up and a new day began, as it has every day since. He really was just as wonderful and beautiful and perfect as he was the day before, if not even more so, just as he continues to be every day. And the resolve at my core grows anew each day as grace slowly and continually seeps into each crack inside me, bringing with it the love and joy to ll and heal the places that were once raw with hurt and anger and grief.
A new journey begins

Diagnosis Day separates the B.C. and A.D. of your parenting life. It is the line we cross to never return, but in time I realized one important truth. I dont want to go back. I wouldnt trade places with anyone. Theres no clear, step-by-step path from self-doubt and despair to embracing your identity as an
Your child has wonders to reveal to you, wonders you never dreamed possible.
autism parent. Its often challenging, gritty, and messy. It is never perfect. But I have a conviction about this journey. If you are willing to be honest with yourself, if you are willing to dig deep into yourself to nd your courage and perseverance, and if you are willing to open yourself to the possibilities this journey can oer you, what you will discover will astound you. Your child has wonders to reveal to you, wonders you never dreamed possible. Whether your child received an autism diagnosis yesterday, quite a while ago, or somewhere in between, or if you are still in the process of seeking an evaluation, youre likely reading this because you have the same question we did. What do I do now? Right now, I imagine you are lled with doubt and fear. I also know that you are stronger than you yet realize. There are immense challenges and amazing days ahead of you. And most importantly, even if you dont believe it yet, I want you to know that you are ready for this. This is an open letter to you about why I believe in our children, this journey, and you. So let us begin.
I dont think I can do this
Youre not ready, and neither is anyone else

Youre scared. Youre angry. You feel lost. You dont know why this happened. You feel like its your fault.
You will never be ready for what will happen. Being ready is impossible. Thankfully thats not the point at all.
You feel like youre going crazy. You feel like you're falling down a dark hole. You feel like youre all alone in the world. You're afraid for your child's future. You feel crushed by the awful autism stories you've heard. You fear it will never get better. You don't understand all this jargon people are throwing at you. You don't even know who to ask. You feel paralyzed about what to do now. You are afraid it will always be like this. You will say to yourself, I dont think I can do this. Youre overwhelmed. You feel like youre not ready for all this. The enormity of it is beyond all your comprehension. But heres the deal. Unless you are some sort of other-worldly being, youre not ready. None of us are. You will never be ready for what will happen. Being ready is impossible. Thankfully thats not the point at all. No one, regardless of whether they are an autism parent or not, knows what will happen next in their lives. For us, one minute you start wondering what you can sell to buy yourself some Xanax, and the
I dont think I can do thi s
next minute youre celebrating a new sound your child gured out how to make. It can be both crazy-making and exhilarating at the same time.
Remember that out here, we are never truly alone.
At rst, its like the wildest roller coaster imaginable. Its stomach-churning, disorienting, dizzying. You just want to get o the ride. But then you start to adjust to all the ups and downs, and this becomes your new normal. You may scream, laugh, be too scared to talk, or hold your arms up and let the wind blow through you as you go ying into the thrilling unknown. There are no answers in the back of the book. Hell, theres not even a book. There are handwritten notes, a handful of sketched-out maps, and a few stars to orient yourselves by. There are autism parents and autistic persons who have travelled this road ahead of us. Theyve left us breadcrumbs and their own journals from the trails theyve ventured on. We all hike the Autism Trail, but it never looks exactly the same to any of us, just like any other wilderness trail. We must make our own footsteps on this path, but remember that out here, we are never truly alone.
A space to grieve
We have in our minds, from the moment our children are born, ideas and images of how their lives
We must let go of the life we have planned, so as to accept the one that is waiting for us. Joseph Campbell
will unfold. Sitting in a chair and hearing 'autism' spoken about our child wasnt part of that. This is where the grief begins. Our parenting stories begin with imagining rst smiles and rst steps and rst words. We imagine them playing with other children in the neighborhood. We see them going to their rst day at school, their small hand in ours as we hold on to reassure both them and ourselves until we have to let go. Theyre great students, artists, and young athletes. Were the proud parents at the game cheering their child on to heroic victory. The dreams go on to rst loves, graduation, college, going out on their own, their rst job, marriage, our perfect grandchildren, everything. Whether we admit it or not, we want the whole, perfect dream. We want the fairy tale for our children. Now we have no idea what will happen. Weve landed in an unknown story. Were staring at a blank page. But this isnt how the story ends far, far from it. Its how a new one begins. Every parent who has received an autism diagnosis for their child goes through some form of grief, even if you expected to hear the doctor say the word autism. I'm convinced that we have no choice but to go through this grieving process as completely as we can, with care, patience, determination, and respect. Give yourself time and space to do it.
Notice that this is completely about us as parents. Our children are wonderful and perfect as they
Grief is a spring cleaning, a making room. You're grieving to repack for the adventure you're embarking on. You are making room for the story you and your child will write together now.
are. These are our stories; this is our grief. This process is about you, so be clear about that. Grief is a spring cleaning, a making room. You're grieving to repack for the adventure you're embarking on. You are making room for the story you and your child will write together now. The blank page waits for us to choose how to write this epic we now nd ourselves in. Where you're going is still unknown, and it's scary as hell not knowing. The only comfort you get right now perhaps is that you're in the company of a lot of people who are feeling scared and lost too. Even if your hand is shaking so badly you can barely hold the pen, put it down on the page and begin to write. You dont have to know what story you are going to write together or what is going to happen. You cant really know this anyway. We learn as we go along. Our stories are imperfect, confusing, but uniquely ours. Most of all, give yourself the grace to grieve and the freedom to begin your new story.
10
All you have to do right now is breathe
All you need in this moment is to practice accepting who you are and your life as it is right now. Thats it.
I wish I could say all you have to do is decide youre going to do this, and from then on youre on the road to something that approximates salvation. The reality is that it is a decision you make every day, sometimes many times a day. Dont worry about the future, tomorrow, or even a few minutes from now. Easier said than done, I know, but try. Breathe in slowly. Breathe out, and try to release the future. All you need in this moment is to practice accepting who you are and your life as it is right now. Thats it. Try not to make it more complicated than this. When everything falls toward chaos, all I know to do is breathe, let go as best I can, and try to accept who I am. I usually can do this much. And in doing this much, the rest eventually will be taken care of.
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We are terried of what we dont understand

I want to admit something up front. During all the batteries of prenatal tests we had with Jonas, I was afraid. No, strike that. I paced the house, chewed my ngernails, and barely slept waiting for the test results with mortal terror. I knew I could and would love our child no matter what, but I was still afraid. I barely knew how to take care of myself, I thought. How would I be able to take care of a child with signicant needs? When Jonas's initial prenatal tests came back as 1-in-55 for Down Syndrome, my anxiety went into overdrive. I was convinced I would completely fall apart if faced with this challenge. So, I did what seemed completely normal to me at the time. I frantically searched for aws in the test itself. And I found them. Those tests, as experimental as they were, really were full of it. However, the truth is I found little comfort in this, nor should I have expected to. Its just how I cope with things. Later prenatal tests changed the number to 1-in-6000. I felt duped by genetic testing. I hated them for putting me through all that terror. In hindsight, this seems silly, but that's how I felt. We are terried by great challenges we do not understand. As a naturally anxious person who already had a knack for being afraid of most everything about the future, I was particularly good at this. The irony in what eventually did come to pass is not lost on me. Then Jonas was born with barely any issues. Sure he slept very little, but beyond our sleep deprivation, we enjoyed becoming a family, and I grew more comfortable and less terried of my new role as a father who really could more or less take care of myself and this precious child we were entrusted with. For a while, my fear abated.
I knew I could and would love our child no matter what, but I was still afraid.
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When Jonas was about six months old, the rst signs that something was going on appeared. He would occasionally space out for a few seconds. An evaluation and various tests came back negative, and eventually that went away. Then three months later came his aversions to eating pretty much any solid food. That started us toward Early Intervention, more evaluations, then therapy with a feeding specialist. The feeding therapists oce waiting room was really our rst introduction to children with signicant needs. At rst that fear returned, that fear of what I did not understand. But something wonderful began to happen. Actually being with these children and their families shone light on my fears. They were kind to us and each other. Because we went to the feeding therapist at the same time each appointment, we regularly saw the same families. We got to know the children a little, and each had a spirit that radiated something wonderful. Few of them spoke much, if at all, but they taught me something, something I would desperately need as time went on. In time we moved on from just feeding therapy to developmental and speech therapy at a dierent oce. Again, our regular appointments brought us into regular contact with a new set of children, and they, too, taught me something fundamentally important. Finally, I started to get it. We are afraid of that which we dont understand, but the way through the fear has nothing to do with actually understanding. It is simply to experience and appreciate each child for who they are. Get out of your head and into your heart.
We are afraid of that which we dont understand, but the way through the fear has nothing to do with actually understanding.
13
Still I thought our time on this road would end at some point. I believed that if we did enough
The enormity of autism parenting is impossible to comprehend. Almost none of us begin with even the slightest training or knowledge about how to do this.
therapy and gave it enough time that we would graduate, and Jonas would join his peers in a preschool somewhere. After we got home from receiving Jonas's diagnosis, I went to our backyard and literally pounded the dirt. I was angry. I was terried all over again. I didnt understand anything. I didnt know how I was going to do this. The enormity of autism parenting is impossible to comprehend. Almost none of us begin with even the slightest training or knowledge about how to do this. But I didnt get that yet. Im not sure it would have comforted me much even if I did. We e-mailed all of his therapists with the diagnosis news within a couple of hours after we got home from the psychologists oce. When we walked into the therapy oce the next day for Jonass regular appointment, a sort of hush came over the sta. It was not one of pity, but of compassion and respect. I was still walking around in a daze like someone who had been sitting a bedside vigil for too many sleepless nights. I had no idea where life was going anymore. I looked around the waiting room at the children so familiar to me. The little boy I knew as the One Who Loves Everybody walked to me, paused a little longer than usual, and smiled. Our developmental therapist walked out to the waiting room and called us back. I picked Jonas up and together we went back to our little room, a little less afraid.
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A journey of revelation
Parenting an autistic child is a process and journey of revelation. It is not about knowing everything,
It's like driving a car at night. You never see further than your headlights, but you can make the whole trip that way. E. L. Doctorow
being ready for whatever is coming down the road, or otherwise learning all these things we think we need to learn. Remind yourself of what your mission is now: to get your child to where they can become the fullest expression of themselves. You dont have to know how to get there yet. You dont need to plan out the journey before you start. Just take a single step, then another. Thats it. Thats the same way wed walk anywhere whether its to the bathroom or the other side of the country. And as the Doctorow quote says, you dont have to see further than right in front of you to get where you dream of going. All you have to do is start, do the best you can, and decide, even if its just for this brief moment, that you can do this, that you will gure it out no matter what. Youre an autism parent now. You will do what it takes. Trust me. And because of that, you will have what it takes.
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I am going to be OK
You are going to be OK

Youre in a raw place at the beginning. You need time to regroup. As when anything life-altering
When it is dark enough, you can see the stars. Ralph Waldo Emerson
happens, you need to pull inward, be gentle with yourself, and take the time you need. Let me just go ahead and say this now. You are going to be OK. However, lets be honest. Your OK is dierent now. Youre not going to be OK all day, every day. Anyone who says they are is lying or mentally ill. What your new OK is will be something you discover along the way. What you are seeking is a completely dierent kind of peacefulness than youve ever sought in your life. Ideally, this is a peacefulness where you can face the strongest winds of chaos, staying rooted in the ground while able to bend, but not break. Many days its the feeling at the end of the day that you survived and that tomorrow will hopefully be better. Other days its the satisfaction that you are breathing and you managed to get your pants on correctly. If nothing else, draw peace from the fact that we are all in this together. You are not alone.
I am g oing to be OK
17
Let the baggage go

At the beginning of this journey, we all stare at our lives as if charged with the task of emptying the
You will grow into your role. And if you do the work of caring for yourself, you will make it.
ocean with a leaky bucket. We're struck dumb with the enormity of it all. Being an autism parent may be the hardest thing you ever do. No sense lying to you about this. When your child gets an autism diagnosis, the vessel that is you feels like its blown to bits. But you will make it. You will do what it takes because thats the kind of person you have become whether you know it yet or not. It gets better rings hollow here. It does and it doesn't. You get better at it. It gets dierent. Challenges change. Abilities grow and transform. It's completely nonlinear. You will grow into your role. And if you do the work of caring for yourself, you will make it. You may be inclined to think of OK as a running average, the sum total of all the craptastic lows and transcendent highs youll experience as a parent. At one level its ne to do this, but youll be more at the mercy of where you are on lifes roller coaster at any given point. To get to OK, you have to let go of a lot of emotional baggage. You will nd out, if you havent already, that you are dragging a heavy burden of expectations, ought-tos, and notions of what you think your life needs to be like in order to be OK. As an autism parent, you have a lot of things to carry every day. This will be a constant issue through your life. This means one thing.
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You need to shed as much of that old burden as you can.
But being an autism parent is always a great unknown. The quest is to become more and more OK with the unknowing and the unknowable.
This baggage is so integral to who we have become, however, that laying it down can feel like chopping o an arm or taking out our own spleen. We dont even like these burdens, yet we cling to them like a security blanket because they are the devils we know. To lay them down would mean walking out into a great, terrifying unknown. But being an autism parent is always a great unknown. The quest is to become more and more OK with the unknowing and the unknowable. In time you will discover that this unknowing clears the path for revelation and wonder, but here at the beginning of the journey I know about the only thing you can feel is lost. This will take time, but one by one you have to identify what issues, voices in your head, or emotional and family baggage youre carrying around from your many years of life, and lay them down.
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You dont need to be perfect or even know what youre doing

We keep thinking we need to be perfect. We think that if we just try hard enough, work even more, and completely empty ourselves of energy and eort that we will overcome all of our challenges and our children will thrive. Not to diminish anyones perspectives on this as weve all felt this way, but heres the reality about
So you feel like you dont know what youre doing? How could you possibly know right now?
this line of thinking. This is bull. Also, don't confuse OK with being happy all the time. It doesn't mean being in control of things, managing and coping well, and being some autism version of the Cleavers. Those were all ridiculous fantasies to begin with, and its unrealistic for us to expect that of ourselves. The only thing these expectations do is bankrupt us of energy and sanity. At least agree with me that no one else should have this expectation of you, and we can work on letting go of that expectation of ourselves later. So you feel like you dont know what youre doing? How could you possibly know right now? No one would expect you to parachute into a foreign land with some dialect youve never heard with a completely alien culture and be as immediately and perfectly uent as one whod lived there their whole life. And becoming an autism parent is much more complicated than that. You learn by living it.
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Thats the secret. Really. You will learn quickly because you have to, because your entire life is on the
No one is ever a master. No matter how with it anyone appears to be, theyre not. We never master this material. We are always learners. We will forever be pilgrims seeking wisdom.
line. But the journey is not unlike learning to walk or speak a foreign language. You practice it, continuously and faithfully, and you turn practice and hard work into knowledge, wisdom, and greater condence. Heres another not-so-secret secret. No one is ever a master. No matter how with it anyone appears to be, theyre not. We never master this material. We are always learners. We will forever be pilgrims seeking wisdom.
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e 1% Rule
Most people only seem to know more than you about various important things in life. They often dont.
I dont know who came up with this originally, but theres something Ive taken to calling the 1% Rule of Expertise. This means that regardless of whether someone is 1% or Eleventybillion% more knowledgeable than you about a subject, you wont be able to understand how much more either of them knows than you do. You simply wont know enough to know. This is a big reason many of us walk around all day long feeling pretty stupid and thinking a whole lot of people know a hell of a lot more than we do. Its easy to fall into the trap of feeling like an idiot who will never learn what you need to learn to be successful or even sort of competent. Here are the most important things to remember about the 1% Rule of Expertise: 1. Most people only seem to know more than you about various important things in life. They often dont. 2. If they do know more than you, it probably isnt by much. 3. Whether they know a little more or a lot more, they usually got there by a mixture of work and devoting time to learning. Theres really no substitute for spending the time to learn and being patient to get there. 4. If I or another parent seems to you like were experts at this, its because weve been at it longer and because of the 1% Rule that keeps you from really understanding what we know and what we dont. (Hint: What we dont know beats what we do by about a factor of a zillion.)
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You will not be perfect. You have been liberated from that requirement, which was horrible to begin with.
This means you can get there. Some people just naturally understand everything, but they are the exception. The rest of us acquire knowledge, experience, and wisdom the old fashioned way through time and eort. You will not be perfect. You have been liberated from that requirement, which was horrible to begin with. You dont even have to be all that good. Thats OK. Its not a requirement either. Just give it your best. That will be enough.
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You have my permission

This isnt the end of the world. Today is the beginning of a new, rich life. If youre still reading this, maybe you think I have some idea what Im talking about. So maybe that
You have my permission to not be perfect.
gives me some license to do this. If you need someone else to give you permission, thats ne. Im giving it to you now. Here you go. You have my permission to not be perfect. You have my permission to screw everything up today and start again tomorrow. You have my permission to stop feeling guilty. You have my permission to know that its not your fault. You have my permission to cry when you need to regardless of where you are. You have my permission to be scared. You have my permission to freak out. You have my permission to take several consecutive minutes (preferably longer) to do something to take care of yourself. You have my permission to turn on a TV show that calms your child while you eat, drink coee, stare at your belly button or the wall, or do nothing whatsoever.
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You have my permission to not worry about the future right now. You have my permission to take respite time when youre oered it and to go ask someone for it. You have my permission to exercise and get stronger and healthier because youll need all of it.
You have my permission to not worry about the future right now.
You have my permission to not give a damn about autism today. You have my permission to give your child/children to someone you trust who will do enough to keep them alive for a few days while you get away and rest. You have my permission to spend some money on yourself. You have my permission to tell people in stores to go to hell. You have my permission to feel like quitting. (Hint: You wont actually quit.) You have my permission to reach out to other families and ask for help. You have my permission to reach out to anyone you want and ask for help. Honestly, if it wont kill anybody, cause long-term physical or emotional harm, or irreparably screw up your family or your life, let it go.
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Amazing Grace
You cant make peacefulness happen within yourself, your family, or anywhere else. Actually, its much more likely to happen if you stop trying and start paying attention. I often dont feel that peaceful about all this. I worry about the future. Will Jonas ever be able to live
I am terrified Ill be unable to handle the challenges in the future.
on his own? Will he graduate, fall in love, nd a vocation he enjoys? Does any of that matter as much I might think it does? What will happen to our boys if we die? Are we ever going to have enough money to get out of debt? I dwell on the past. Could I have done something dierently? Did I not do enough? I regret things I left undone, poor decisions I made. There are plenty of things in my past that I still dont understand. There are painful events I rarely discuss but think about all the time. They come back to me as strobelighted nightmares. I still dont know what to do with them or whether to do anything at all. Nearly every night, I stay with Jonas in his room until he settles down and is near falling asleep. Sometimes this takes a while, but often he lies there mostly quiet and a little dgety. I sit in the chair in his room and inevitably my thoughts stray to the future and the past. I remember being bullied at school and fear the same fate awaits him. I remember how long I never felt good enough. I remember all the times Ive felt burned out, exhausted, and teetering on the verge of a nervous breakdown, and I am terried Ill be unable to handle the challenges in the future. Before I put Jonas in his bed, we have our nighttime script and songs I sing to him. I confess to not being a very religious person, but one of our songs is three verses from Amazing Grace. I love the song and its multilayered complexity. Jonas seems to prefer songs in Common Meter.
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As Jonas snuggles into his bed wrapped up in his blanket and sheet, looking over at me through the nightlight glow, I remember how lost I have been, but here in this moment with him I am found again and feel peace seeping through the cracks within me. I recall all the many toils and snares through which we have come so far, a mountain of challenges
In moments like that, I realize hes right. We really are going to be OK. I dont have to know how.
that seem never-ending. Wherever it came from, the grace and strength we have needed has brought us safe this far. Our journey together has taught me that somehow it will continue to come and lead us forward, someday to feel like we are home right where we are. I remember back when he rst began some initial, halting speech. We often had little conversations and scripts we managed one syllable at a time. Hed say one, then I would say the same one back to him. Hed say the next one, and so on. He rather quickly memorized the words to Amazing Grace, and this is how we sang it together, one alternating syllable at a time. Ah. Ah. May. May. Zee. Zing. Gur. Gur. A. A. Sssss. Sssss. Now, when he decides to do it himself, he still speaks rather than sings the words, but he goes most of the way through on his own with the jazz-like, improvised inections of his still tenuous voice. I just listen with my eyes closed, and it really hits me how far he has come. Last night, when he asked me to sing it to him, he said, Amazing Grace. OK. In moments like that, I realize hes right. We really are going to be OK. I dont have to know how. It may only last a eeting second, but be open to all those moments you can. Breathe them in and savor them. We dont have to do anything special or measure up to any standard. We belong to each other, and between us lies some undenable, innite, amazing grace. Because of this, we will be OK.
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I am going on an adventure
Welcome to your epic

You are now like the adventurers of old, starting out into a wild, unknown frontier. Admittedly, for the most part, those explorers chose their adventures. Ours chose us. Adventures require that you travel beyond the horizon. You must take the long view now. This feels nearly impossible given how easily the immediate chaos of the moment takes over our lives. A thousand dierent needs and responsibilities scream for our attention every moment.
For the most part, those explorers chose their adventures. Ours chose us.
I have found that juggling the immediate and the long-term horizon gets easier as time goes on. You get perspective as you put miles under your feet. You climb some mountains and begin to see what this new world looks like. It sinks in the most when your child nally overcomes a challenge theyve struggled with for months or years. You can look back and see all that went into their amazing achievement. You are uniquely able to appreciate the wonder of it. This is one of lifes great gifts to you now. Our stories can take a long time to develop. We will stumble and wander around out here a while. But that's how all epic stories work. Welcome to your epic.
I am g oing on an adve nture
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Believe that we can be heroes

If adventures were easy, theyd be called vacations. If adventures were all horrible, theyd be called
We begin to imagine that maybe, just maybe, we could be heroes too. Now youll have that chance.
nightmares. Adventures dance on the knife edge of joy and wonder, fear and disaster. One minute youre sailing to the New World, the next youre in a terrible storm on the open water and no one is coming to save you. But these are the stories we are most drawn to. We dont like watching movies and reading books where nothing much happens. The characters dont really go anywhere or do much of anything. No one changes. Nothing changes. We are drawn to the epics, the stories where everything is fraught with danger, but then heroes arise from the most humble of circumstances and triumph against all odds. These heroes are just normal people thrust into overwhelming challenges. We dont see how they can possibly make it. But when they do, we cheer. We believe that maybe, just maybe, anything is possible. We begin to imagine that maybe, just maybe, we could be heroes too. Now youll have that chance. You and I are reasonably normal people now facing some extraordinary challenges, and our children face even greater challenges still. Believe that we can be heroes too.
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You will be forever changed

Regardless of what happens, the adventurer always ends up changed forever. I prefer to think of it as being transformed. I realize now that before becoming a parent my life was
We are inspired day after day by our courageous little heroes who persevere despite great odds.
rather uninspired. I was doing the things toward school and career and whatnot that I was supposed to, but I hadnt gured out my purpose in life. I didnt understand what I was meant to do. Its safe to say this purpose came and found me. And part of my purpose was to be transformed, to discover that I could become more than I dreamed possible. I was given this awesome responsibility, one that honestly I didnt think I could handle. But I somehow have. Each one of us takes a dierent path to discover our purpose, and the truth is we have to keep searching. We gure something out, and then the path changes. We start again, make a new discovery about ourselves, and our journey continues onward. Each time we are changed and transformed. We nd new strengths and allies. We pick ourselves up o the ground time after time. We raise our sts in triumph. We are humbled again by how far we have yet to go. We are inspired day after day by our courageous little heroes who persevere despite great odds. I suppose there really is one guarantee. If you open yourself up to this adventure and all its possibilities, you will be made new again and again.
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Your roller coaster of emotions

Tears will be plentiful. You will cry with despair. You will cry with anger, grief, and frustration. You will cry when your child does something that is pure magic. You will cry the rst time they do something theyve struggled with their whole lives. You will cry at every milestone from the biggest to the most minute. You will cry a lot, and this is a good thing. You will cry because your heart is full of everything. The ood cannot be held back. We are too nite as vessels to hold it all in. You will rejoice beyond your wildest imaginings when your child nally does something you only dreamed possible. When Jonas spoke his rst, halting sentence without help, we turned the rest of the day into a party. We told a few hundred friends online, and they rejoiced with us. It was a beautiful, perfect day. And you will have many of these. You will despair because you think it will never get better. You will feel seething anger toward institutions withholding what your child desperately needs. You will feel too tired to stand. You will have days when all you want to do is make it back into bed. You will have many of these too. When all seems lost, turn your eyes up toward the horizon. Stay focused on where you are heading. Remember why you are on this adventure. The roller coasters of emotions are all temporary. The adventure and the goal remain. And all you have to do is look at your wonderful child to remember and renew your courage to keep going.
All you have to do is look at your wonderful child to remember and renew your courage to keep going.
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Go where the road takes you

Weve spent a fair amount of time working on safety in public. We had been practicing with Jonas by walking on a sidewalk in our neighborhood so he could learn about how to walk safely and to help him be more comfortable away from home. One incredibly rainy and cold Sunday, he was begging to have Jonas will go for a walk added back to
Hand in hand, we walked in near silence. It was like he wanted to share this time with me and me alone.
his schedule where it normally was. Typically, we just walked to the corner and back, barely more than 200 yards. I was still in a t-shirt and shorts from working on the house, but I just grabbed an umbrella, took his hand, and we walked outside. It was cold, but we weren't going far. But he kept walking past the light pole near the corner where we usually turned around. As a kid of strict ritual and boundaries, this was unheard of. My heart told me to go with it and be open to something special. Ill forever be thankful that I did. We slowly and quietly followed the half-mile loop around our neighborhood in the driving rain. The only sounds were the rain on the umbrella, our shoes splashing on the sidewalk, and an occasional hum from Jonas remarking on something I didn't yet understand. Hand in hand, we walked in near silence. It was like he wanted to share this time with me and me alone. It reminded me of when we used to walk a lap when he was not quite two years old. He wouldn't walk on his own anywhere, not even a step, without holding on to someone or something. So we'd walk that whole half-mile together even though he wouldn't or couldn't walk a foot by himself.
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That moment of beauty was reserved for us, the two willing to brave it and discover something wonderful together.
And in that way we took the journey together. This is how he learned to walk on his own. It was freezing cold and wet. No one else was out there. That moment of beauty was reserved for us, the two willing to brave it and discover something wonderful together. There is grace and wonder to be discovered out there no matter what the weather is like. Go out, search, nd all the amazing things waiting for you. Take your childs hand, and see where the road takes you.
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I am strong enough
Climb the mountain

You'll never know how strong you are until being strong is the only choice you have. Unknown A mountain towers above you. You feel small in the face of it. And you know somehow, some way,
You will, often blindly, stretch the limits of your reach and find that down in the hidden places within you are springs of courage rising toward the surface.
you have to climb it, on your hands and knees if necessary. The enormity of the task before you feels crushing. No matter how hard you try, it is beyond comprehension. You have no idea how youre going to do it. But you will. I promise. You are strong. You are up to this challenge. What your life is now calling upon you to do is not too big for you. You are going to kick ass as an autism parent. Climbing is hard, but the beauty and wonder you will see on the mountain will take your breath away. Theres an old African-American gospel song so tting to us that says, Lord, don't move your mountain, just give me strength to climb it. The mountain isnt going anywhere. You eventually may come to realize that you dont want it to move, but thats a story for another day. Our prayer in whatever form we choose to ask it and whomever we ask it of is simply to nd the strength we need to go ever higher. And you will nd strength you never knew you had. The well of strength inside you is so much deeper than you know. For most of us, life has never made us go that far down that well to nd out. But you will, often blindly, stretch the limits of your reach and nd that down in the hidden places within you are springs of courage rising toward the surface.
I am strong e noug h
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Everything in your life has led you here

You really have been training all your life for this. Everything you've faced until now is wisdom and fuel for what is coming. From here you will build your life as an autism parent. Everything you have learned and experienced. Everyone who has loved you and nurtured you. And
Every step you have taken has led you to where you are now. You will draw on every last bit of this from here on, and you will be stronger and better for it.
yes, even those who have betrayed you, disappointed you, tried to hide your light, or withheld what your soul has needed to thrive. Every triumph and failure. Everything youve achieved and everything you ever lost. Every memory that lls you with warmth and peace, and every one that withers your soul and leaves your blood cold. Every story you love to tell, and every secret you are ashamed of and would never tell another soul about. Every step you have taken has led you to where you are now. You will draw on every last bit of this from here on, and you will be stronger and better for it. Because of all of this, you already have what it takes to be an autism parent. As challenging as many parts of my life have been memories that have haunted me, everything of value Ive lost, my own failures and people who have failed me, mistakes Ive made I now wouldnt give any of them back. For the rst time in my life, I can say that and truly mean it. This is what being an autism parent has done for me. All of my experiences and years have gathered and accumulated to give me the most important thing I need now me.
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ese too shall pass

Ive spent whole years of my life unhappy. Much of that time I spent believing I would always feel adrift in the world, never knowing my purpose or the meaning of what Im supposedly here on this
Hold fast to the belief that there is something unquenchable inside you that may get knocked down but will always come back.
Earth to do. I despaired that it would always be hard, and all Id be able to do is run out the time of my days until it was over. Now those feelings are eeting. The rst days and weeks after the diagnosis were the hardest, of course. Now I allow myself a self-pity day every now and then. The feelings come and go. Ill have evenings where I self-medicate with a bag of Oreos. Life will get back on track eventually. Its never going to be perfect. But over all the years of my life and especially these last few, Ive learned one of the most essential truths of life. The challenges, worries, stresses, even despair in this moment, they all pass, and then the strength returns. When all you can hope for is to just not suck today, thats enough for now. Itll pass. Youll repeat this cycle, but hold fast to the belief that there is something unquenchable inside you that may get knocked down but will always come back.
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How long can you carry your child?

As I write this, Jonas has been in an arm cast for over a month. He badly broke both bones in his forearm going down the slide in one of those giant, inatable, bouncy houses. On top of all the guilt I felt about that, there was the more important crisis of how to help a terried child with a severely broken forearm get through both urgent care and the emergency room without damaging his arm more.
The terror was stronger than the physical pain. I had previously only seen visions like this in my nightmares.
He wouldnt let me put him down at all. If I tried, he understandably went into full panic. This came with a very real danger that he could make the break much worse and cause nerve damage. I saw him try to push away from and ght o nurses and doctors using his broken arm. The terror was stronger than the physical pain. I had previously only seen visions like this in my nightmares. If I carried him in my arms and sang to him, he remained relatively still. So thats what I did. Jonas at the moment is a bit over four feet tall and weighs about 55 pounds. As our journey through the hell of that awful day began at urgent care, I wondered, How long can I carry him like this? I honestly had no idea how I could carry him for much longer at that point. We drove straight from urgent care to the childrens emergency room at one of our local hospitals. I carried him in and then back and forth in the tiny, equipment-cluttered exam room trying to keep him calm. Seven small steps toward the rear wall, seven small steps back to the door. Stop occasionally and sway. Sing the same two songs again and again. Repeat. Fight to get him on the exam table. Do whatever they need to do. Pick him back up again. Seven steps to the rear wall, seven steps back. Repeat.
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I held him while we talked to doctors and nurses. I told them everything he needed to help him through this and why. They told us what they needed to accomplish, and I told them how best we could do that with him.
He kept looking me in the eye begging me outside of words to make it all stop. I could feel myself dying inside. I kept singing.
When it was nally time to try to get X-rays and the splint on him, I had been carrying him for three hours. We had a half-dozen ER sta and both Mary and me holding him as steady as we could on the exam table while they tried to get an IV in him. They had to sedate him to get a splint on. There was no other way. Jonas was in full, absolute terror. I laid across his chest, my face two inches from his. I sang into his ear while he screamed. He kept looking me in the eye begging me outside of words to make it all stop. I could feel myself dying inside. I kept singing. The ER doctor, who may very well have been the kindest doctor on the planet, stroked his hair and spoke softly to him. Itll be over soon, sweetie, she said. And then my minimally-verbal son cried out something hed never said before, When! When! I absolutely lost it. My tears poured out onto his red shirt. The doctor started patting me on the back. If I could have severed my own arm to make all this stop for him, I would have without hesitation. After what felt like years, they got the IV in and the sedation took hold almost immediately. His body eased into the table. All my muscles had cramped so badly I had trouble getting o him and the table. I felt like part of my soul had stuck to the vinyl covering of the table and ripped away.
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They got his bones set and the splint on. A little over an hour later, we went home. The remnants of the sedation thankfully took away most of his pain for the rest of the night. I, however, knew the shock of all this was not soon to wear o. But I did answer one question. How long can you carry your child? As long as you have to. When circumstances and challenges call for it, you will do what it takes. You may not believe you can do it nor know how you will do it, but you will. You wont win every battle. You may get knocked down over and over again. You may ride the edge of falling apart. But you will do what you have to for as long as you have to, because you are strong enough to do it. You will do it because you are an autism parent and that is your beloved child.
But you will do what you have to for as long as you have to, because you are strong enough to do it.
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You are enough

You are braver than you believe, stronger than you seem, and smarter than you think. A. A. Milne We don't get style points as parents. No one takes o points if we don't stick the landing. If people feel the need to hold up a scorecard in front of you, rip it out of their hands and paper cut them to death. We'll never be able to do enough. The only way is to be enough. To decide just as you are right now that you are enough. Theres no more a cure for our manic neuroses than there is for autism. Its a decision you make, sometimes dozens of times an hour. And if you feel incapable of making it, turn it into an article of faith, a belief in something you cannot see. Being enough is an inside job. Just keep saying it over and over like a mantra. I am enough. I am enough.
We'll never be able to do enough. The only way is to be enough. To decide just as you are right now that you are enough.
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I will be open to this journey
e journey of possibility
Lao-Tse said, The journey of a thousand miles begins with one step. If there were ever a motto for parents of autistic children, that would be it. I think every parent whose child just got this diagnosis should paste that on every wall and mirror in their house.
But what is unknown is full of what is possible. This is a journey of possibility. This is your journey now.
At the beginning, right after the diagnosis, our fears expand and swallow up that entire thousand miles, but our eyes cant see any of it. Autism becomes for us the journey that seems to have no road or path at all. That darkness of our fear swallows us so we cant even see our own feet to know where to step. The guide stones of life we expected to follow walking, talking, reading, school, soccer, band, dating, graduation, college, marriage, kids, grandkids seem to have vanished. Does that mean life is doomed? Of course not, but at the time of diagnosis, we have no way to think through that. We are paralyzed by the enormity of the unknown. We see a featureless night with no signposts or light. But what is unknown is full of what is possible. This is a journey of possibility. This is your journey now.
I w ill b e ope n to thi s jour ne y
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e journey of acceptance and love

The joy in a relationship comes not in the outcome but the journey itself. Whether they are your
I will stand beside you in joy or in sorrow, in ease and in conf lict, putting the commitment we make today above any obstacle that we may face. This is my solemn vow.
child, your partner, or someone else you love, you accept the person as they are, and you embark on a journey of discovery together. You will both change and grow naturally as a part of your relationship, but your commitment remains to each other. By accepting the other person as they are, you weather each storm as it comes. Your strength comes from within you and the bond you share with that person, not from some external outcome or expectation. I remember the marriage vows Mary and I wrote for each other.
I love you just as you are. I accept you as a blessing from God. I join with you today to be the partner of all my days, to be the parent of our children, to be the companion of my house; we shall keep together what share of trouble and sorrow our lives may lay upon us, and we shall hold together our store of goodness and plenty and love. When our way becomes dicult, I promise to stand by you and uplift you, so that through our union we can accomplish more than we could alone. I promise to honor and care for you, to speak the truth to you in love, and to cherish and encourage your own fulllment through all the changes of our lives. I will stand beside you in joy or in sorrow, in ease and in conict, putting the commitment we make today above any obstacle that we may face. This is my solemn vow.
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We took our vows knowing that our futures were lled with unknowns, but we had no idea what
We accept our children as they are. We put our commitment to them above all the obstacles that come our way. This is our solemn vow.
adventures and challenges awaited us. We knew there would be great joy, profound sorrow, and everything in between, and we have indeed experienced the full gamut of emotions. You cannot create a future without these things. They all make up who we are. We accepted each other as we were, and we have done this every day since. We put our commitment to each other above any obstacle. And this is the way for parenting as much as it is for marriage. We accept our children as they are. We put our commitment to them above all the obstacles that come our way. This is our solemn vow.
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e journey of opportunity
The two most important days in your life are the day you are born and the day you nd out why. Mark Twain You have the awesome opportunity to make all the dierence in the world to this child, your child.
You have the awesome opportunity to make all the difference in the world to this child, your child.
Through every generation, there has been an unbroken line of mothers and fathers who have survived endless calamity, disease, and incredible challenges. It is through this line that you came to be. The decades of your life and millions of years of evolution have all built up to this moment. You bring all of this to your life, here in this moment. Everything the great, the average, and the completely ridiculous is all wisdom now. You have ne examples and role models to guide you and bad examples of people too oblivious to nd their own pants to teach you what not to do. There are autism parents who have gone before us. While no one can tell you exactly how to do this, many wonderful people have left us breadcrumbs we can follow. Their wisdom is ours to share in if it suits our journey, and their notes on the map are always there should they be right for us to follow. Ultimately, each decision is yours. No one can do this for you. It is indeed an incredible responsibility. But what an amazing opportunity to take this journey with your beautiful, perfect child! If you dont know where to begin, let me make one suggestion. Sit down next to your child, breathe and take in the wonder of who they are, let the world grow still, and ask, Where shall we go today, dearest one?
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e journey of grace
There will be days when dreams become real. You know, those wonderful dreams you have deep in the night when you see your child doing something extraordinary something that normally, in the light of the day-to-day challenges, you aren't sure you could dare to dream possible. Let me tell you about one of those days. For most of his life, every new word was a struggle for Jonas. Over the past several years, we have spent much of our time interpreting the pitch, cadence, and general patterns of his audible communication from moans to sing-songy vocalizations. We'd always talk to him, though, as if we
There will be days when dreams become real.
were all having a 'normal' conversation together. I admit, I grew very accustomed to having whole conversations where I supplied both our speaking parts, like a one-person play. In time came single syllables, which much later became the rst syllables of more complex words. Then a few months after that, like people reading wedding vows but repeating them one syllable at a time, we began to construct complete words, then very short sentences. We eventually got through entire children's books that way, slowly but surely, one syllable at a time. For the longest time, most of his talking in whatever form was in some way prompted by us, whether 'asking' him something or just getting him to repeat something back to us. Getting to "I want" was a huge triumph. For a long time, we had to say "I want" for him, and then he would tell us what he wanted. Then he started doing it himself, and one syllable at a time, we began to better understand his wants and needs.
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For so long, it went like this: Jonas: "I." Person he's talking to: "I." J: "wuhn." Person: "want." J: [says what he wants, like his word
"I want Mama." Let that sink in a moment. To hear that after so many years was pure, soulfilling grace.
approximation for 'apple' (for applesauce), 'sss-ts' (socks, when he wants to go somewhere), etc.] Over time, the meaning of "I want" evolved to include something like "I want to show you this," and then he told us what that was after "I want. It even took on connotations of "I need help with," though we worked hard on adding "I need help" to his vocabulary. But one thing you may have already noticed in all this is that most all of the things he (verbally) wanted for most of his then four years were things, objects. Then, all of the sudden, grace came. Our hearts lit up when he rst told us he wanted something else us. He crawled in behind Mary on the couch, and we did one syllable at a time, "I want Mama." Let that sink in a moment. To hear that after so many years was pure, soul-lling grace. Maybe the vast majority of parents on the planet with young kids had this happen to them lately, perhaps within the last few minutes. How many times have you heard a child shouting "I want my Mommy!" to the rolled eyes and exasperated responses of those looking on? How many times a day do these words go unnoticed really by anyone, except to think of them as some sort of tantrum?
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How many times have those of you with currently non-verbal or minimally-verbal children thought something like, "I would give up everything I own even a few body parts if need be if my child could say that to me, just once?" I have, plenty of times. One night, Jonas was very tired at bedtime. We had clipped his ngernails right before his bath, which always sends him into a sensory tailspin. We got through the bedtime routine pretty well and turned out the light. I put him in his bed, said all the things I usually say to him, and then began to walk toward the bedroom door. He began to sob and cry out pitifully.
I would give up everything I own even a few body parts if need be if my child could say that to me, just once.
"You're OK, buddy. You're OK." I said reassuringly. "Everything will be OK." "I-I-I," he replied in his tearful voice. "I," repeating that syllable as we always do. "wuhn." "want." "Dee-dee." Daddy. After a stunned moment or many moments, I don't know I walked over to his bed. He became quiet, stood up in his bed slowly and peacefully, and held his arms up to me, which I took in mine. We stood there in his bedroom swaying back and forth, with his head on my shoulder. I could feel his body sink and relax.
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It was enough light for me to see all the perfection and beauty of this moment, this wonderful and real moment that could now take the place of my onceunfulfilled dream.
We swayed there in the almost-dark, his room illumined only by a small nightlight shining on the far wall. But it was enough light for me to see all the perfection and beauty of this moment, this wonderful and real moment that could now take the place of my once-unfullled dream. After a timeless while, I asked him, "Do you want to get in your bed now?" He looked up and kissed me, a long-time part of his Jonas sign language for 'yes'. So, I helped him into his bed, told him good night, and slowly walked out of his room with tears still in my eyes, the good kind of tears that pour out when your soul is too full to contain all the wonder, joy, and grace. They are the ones that renew us in the present and water the seeds of wonders and dreams that are yet to come true.
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e journey of wonder
Live this wondrous story. We desperately want to know how our story goes, how the chapters begin and end. Not so we can know every last detail and spoil all the good parts, but to know that in the end our story will be a
But know this. There are no shortcuts. There is no quick and easy path. There is no one plan to fit every child. There is no do this and it works.
good one, one with meaning that we are proud of. We want some reassurance that beauty and wonder will weave through our stories and that in the end goodness and joy will reign. So much of this journey is about not knowing, and then learning to be OK when there is no way to know. And even when there is, there are no shortcuts for getting there. When someone oers you a shortcut, the temptation to take it is intense. But know this. There are no shortcuts. There is no quick and easy path. There is no one plan to t every child. There is no do this and it works. Anyone who says such a thing to you is selling you something, and what they're selling won't work. Some of the medical shortcuts are even dangerous. But at best, shortcuts are often detours that lead to frustration. How do you tell the dierence? Thats a hard one. The old adage if it sounds too good to be true, it probably is works about as well as anything. If someone promises miraculous results, thats a denite red ag.
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Ive learned that the true miracles in this journey do not come from anything you can spend money
But every wonder is a million times more vivid because it has been hard... I wouldn't trade my life for anyone's. I want to discover what happens next. I want to keep living my own story.
on but rather in taking this journey with your child and the discoveries and revelations you nd together along the way. I don't know how any of our stories will go, but I have discovered beauty and wonder all throughout mine so far. Every bit of it has been hard won by struggling to overcome endless waves of daunting challenges. The sorrows have been profoundly hard. Anger runs in, out, and through like a whirling devil. Weariness plays like ever-present elevator music. But every wonder is a million times more vivid because it has been hard. And I will testify to this with all that I am. I wouldn't trade my life for anyone's. I want to discover what happens next. I want to keep living my own story.
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e journey of discovery
Build your new life. The rug, the oor, the earth have all been pulled out from under you. But all this means is that you get to build anew. What you have now isn't a formless void. It's more like a slab of featureless marble. Chip away at it. Remove whatever isn't wonderful, welcome, and sacred. Envision what artistic masterpiece lies within the marble and set it free, even if you have to do it slowly one ake at a time. Stay at it. Liberate the wonder that lies within it. So much will change when you begin to see this not as an obligation but as an opportunity for meaning, a chance to make an incredible dierence. You are now part of something bigger than you that matters more than anything you've ever done before. Many people spend their whole lives searching for that kind of meaning. Yours found you. You are helping form a child into the fullness of who they are. You are discovering the meaning of existence together. Open your heart inch by inch and let amazement and grace in. Do this until you can see. And wonder.
So much will change when you begin to see this not as an obligation but as an opportunity for meaning, a chance to make an incredible difference.
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I am now part of a community
You wont have to do this alone

You will not be alone. There are simply too many of us. We live and breathe this all day, every day. We are all-in, with all of our beings. And we know a fundamental truth about our place as parents in this journey. We cant do it alone. And more importantly, we dont have to. Our childs success is inextricably linked with the success of yours. When we support each other, we are all stronger for it. Build your community. Seek out people who long for your success. Find people who honor your child and you, who will cheer for you when you cant. Seek out those who will celebrate every achievement big or small and oer a shoulder to lean on when the challenges are too great. Hold close those who will walk with you anywhere. Treasure those who will sit with you while you go crazy. Find people who will love you no matter what. When we're ailing in the deep end, these people are our life preservers. Find one ally, then another. Build your village. Let these beautiful people in like sunshine and fresh air through the windows. Together, anything will become possible.
We cant do it alone. And more importantly, we dont have to.
I am now p ar t of a communit y
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e Autism Underground
Its probably not a club you ever imagined being a part of. However, it is made up of some of the most kind and wonderful people I have ever known.
When you receive an autism diagnosis for your child, its like your DNA is rewritten to carry a secret code. Some secret handshake is written into your subconscious. People start sprouting out of the ground and appearing from nowhere. They are from what I like to call The Autism Underground. Congratulations. You are now in the club. Its probably not a club you ever imagined being a part of. However, it is made up of some of the most kind and wonderful people I have ever known. These are the people with whom I will have lifelong friendships. They are the trusted people I turn to for advice, support, comfort, and hope. Some I see in person almost every day. Some I have never met but talk to regularly online. They teach and inspire me. They are part of my family now. Ours is a community that exists slightly out of phase with the rest of the world. Much of the planet has heard of autism, but they know very little about it and even less about what our lives are like. Like with many things in our world, you dont much notice them until you want or need them. If you start really wanting a new phone or a particular color and model of a new car, you start seeing them all over the place. I never noticed how many blue Honda Civics there are in the world until we looked into buying one.
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You likely didnt notice autistic children or most special needs children and their parents until you started searching for a diagnosis. If you did, you might have felt pity for them, or maybe you avoided them altogether. You perhaps had no frame of reference at all as to what our lives are like, certainly nowhere near as
Youll learn what you need to learn in time, and we will be there to help you.
much as you do now. You didnt have any idea that vast resources and communities for us existed, that people specialized in helping our kids and us, and that various agencies and companies operate solely to provide assistance to us. However, learning to navigate this new world along with what amounts to a foreign language of acronyms and terms is one of the most daunting tasks when youre starting out with an autism diagnosis. Remember that others will be there for you. Perhaps we are not so much an autism underground but a tribe of autism parents who know one another by an unspoken bond. As human beings, and even more so as autism parents, we need to belong to something to feel human, supported, safe, and powerful. We are your tribe now. Youll learn what you need to learn in time, and we will be there to help you. For now and I know this is easier said than done dont worry so much about it. There will be time.
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e Autism Family
Autism parents are a family. Like many families, we take care of each other. We support each other through the mundane activities of life all the way to the very edge of doom. We hold each other up when we fall. We encourage each other when things unravel. We celebrate each childs achievements more than any gold medal-winning performance in the Olympic Games. If someone wrongs a member of our family, we are not unlike a maa in our relentlessness. We have a long, long memory when someone harms one of our own.
Autism parents are a family. Like many families, we take care of each other.
And like most families we have many disagreements and dysfunctions. We have plenty of politics. Yes, there are times we really dont like each other. Family life is often messy. Thats just how it goes. No matter what, we all share a few things in common. We ercely love our children, and we will ght anyone to the ends of the earth to protect them. We are also all afraid, afraid that no matter how much we do and how hard we ght that it will not be enough. We ght for and with each other because we care deeply and because we carry so much fear and worry around with us. Our community isnt perfect. None of us are perfect. Thankfully, perfection isnt required to be an autism parent. Regardless of how we think we should get there, we all want the same thing our children to grow, thrive, and become everything wonderful they were born to be. If we remember that about each other, I think well all be OK.
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We are surrounded by heroes

There are heroes all around you. They rise up from the ground like water in our desert. They are other autism parents doing the best they can for their families and others. They are skilled,
This is how we move forward together. People are there for us when we need them, and in turn we do the same for others.
caring, tireless teachers who give everything they have to help our kids reach their fullest potential. They are therapists who see under the surface to all that our kids can do. These saints are like midwives of grace bringing our childrens gifts out into the world. They are the medical professionals unceasingly searching for ways to help alleviate our childrens struggles while harnessing all the gifts and potential they possess. They are the advocates who ght for our children in legislatures and small, basement oces every day. They are the complete strangers who oer kindness, help, or gifts of grace to us in the most unlikely of places. They are those friends and family who stand with us and our children because they love us and want to make the world better for our kids. They are autistic individuals themselves who graciously oer us a glimpse into their lives and our childrens future and teach us how to become better parents. You will meet these heroes along your way. They will support and guide you and be resources for you. They will stand with you even in your most dicult hours. In time, you will become a hero to other autism parents. You will be the support and resource they need when they are struggling. This is how we move forward together. People are there for us when we need them, and in turn we do the same for others. Look for your heroes and reach out to them. After all, we are all in this together.
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e miracle of eating
Jonas has for almost his entire life been a, shall we say, picky eater. By picky I mean that for over four years he only ate six foods and drank one drink. The foods were: buttered toast, Tyson chicken nuggets (breast nuggets in a box, not the bag), applesauce, Tostitos bite-sized tortilla chips, Premium brand saltine crackers, and Sensible Portions veggie straws. (Note: This isnt advertising; he really would only eat one specic brand and kind.) To drink, he would only have lightly-sweetened, decaeinated tea (cold, no ice). We ground up and mixed in some vitamins and whatnot into his applesauce just to give him some hope for nutrition. We had the shakiest of hopes that he would ever eat a variety of foods. He had been in either feeding therapy or some sort of occupational therapy to help him try dierent foods since he was nine months old. A small army of specialists and teachers have worked with him over the years. At the time it was hard to appreciate the progress, albeit glacial, that we made together over those six years of therapy. But I do now. Every single person contributed a little something or a big something either to him or to our knowledge about how to help him. We slowly but surely built momentum, like trying to move a giant locomotive. At rst it moves almost imperceptibly, but it does start moving. Eventually, it reaches a critical point where it becomes unstoppable. Just a couple of months short of his seventh birthday, we embarked on a huge mission. Jonass teachers, therapists, and Mary and I got in a room and agreed to a plan to help him nally learn to try new foods. Based on all prior experience, it was on the surface a completely ridiculous plan.
At the time it was hard to appreciate the progress, albeit glacial, that we made together.
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We not only agreed to follow a specic, custom-built plan to help him try a few new foods, we set the goal of 26 new foods in a single month over four times as many as he presently ate. The plan focused on his strengths and plotted ways around his defenses. We could see he was interested in trying
Professionals have come and gone from our little village, but they each contributed something that brought us to this moment of pure magic.
something new, but he couldnt get around all of his sensory barriers and defenses. We had to nd a way to help him. After a couple of very dicult days, he tried one new food. Just a few nibbles but he tried it. Everyone exhaled. Then we celebrated like wed won the World Series. Then came another food, then another. A oodgate of new foods entered his diet over the ensuing days. He loved some, hated others, and was ambivalent about the rest. It was all wonderful. We shot right past 26 new foods. At the end of the month, he had tried 44 new foods. None of us could believe it. The one-month experiment that really took over six years and a band of committed, caring, skilled professionals had been successful beyond our dreams. As the month came to an end, and along with it the school year, we shared one of our most perfect moments together. At the year-end school party, Jonas and his classmates sat together around the table and ate cupcakes together. One month earlier, Jonas would never have touched a cupcake or anything his peers were eating, and most likely he would not have even wanted to sit at the table with them. But there he was, smiling and eating a cupcake. There wasnt a dry eye anywhere among the adults in the room. That cupcake meant everything. Professionals have come and gone from our little village, but they each contributed something that brought us to this moment of pure magic. They were all there with us in body or in spirit, this communion of living saints, watching Jonas eat a cupcake.
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Build your village

So where do you go to nd people for your village? Youll nd many of them naturally. As you go through the process of nding therapists, enrolling
Dont be afraid to reach out. Remember, you cant do this alone, and the good news is still that you dont have to.
your child in school, and so on, you will begin forming relationships with some wise, caring people. You may also meet people who dont have your childs best interests at heart. This is the nature of the world. If you dont think someone is able to help your child and you, move on. If they arent a good t for your village, they dont get to stay. Simple as that. Your mission now is too important to waste time and energy worrying about managing the feelings of others. Keep seeking out people who do t until you are able to build the team you and your child need. Youll also meet parents everywhere from school to therapy oce waiting rooms to the Internet. We all know how hard it can be to go out and be social. Public outings arent usually our strength. This has made the Internet one of the most essential resources for autism parents. It is our lifeline to others like us. It is a way to reach out for support, help, and solidarity from the comfort of our own homes. Remember, weve been through what youre going through now. Were all going through this journey the best way we know how. We may not know what were doing. We may or may not give you great advice, but our hearts are in the right places. We want to help. Dont be afraid to reach out. Remember, you cant do this alone, and the good news is still that you dont have to.
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Believe in people
I do believe the world is fundamentally good enough. When I have sought a good soul to help, I have always found them.
Its easy to fall into the belief that the world is cruel. There is so much hurt and suering. There are so many obstacles. There are people, companies, and institutions who do not care about us or our kids. Its true that most people in the world dont care as much about this as we do. They just dont have remotely as much at stake. They havent had to spend all their available time learning about autism like we have. We have every right to expect a level of kindness and decency toward our kids, but I dont ask or expect more than this from most people. They have their own lives to contend with. Dont get me wrong. If someone makes a hurtful comment about our kids, does something judgmental, or God forbid bullies them, they should be prepared for righteous wrath. If you want to watch the autism community at its most powerful, behold Facebook or the Twittersphere set ablaze by parents in full cry against someone who does something harmful toward our children. For the most part, I have found people to be kind and helpful to us. I do believe the world is fundamentally good enough. When I have sought a good soul to help, I have always found them. Heres an essential truth being Jonas's dad has taught me. If you believe people and institutions are fundamentally awed, corrupt, or evil, you will not be disappointed. And you will be angry, disconnected from the world, and too isolated and powerless to do what you need to do. If you believe people are fundamentally honest, decent, kind, and generous, you will not be disappointed either. And you will be amazed, thankful, and connected to community after
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community of people who will be lifelong friends and allies. And together you can transform the world. The people who have come into our lives over these past few years have renewed my hope in humankind, and they continue to renew it every day. They have shown me how to believe. When Jonas badly broke his arm on his birthday, the outpouring of support from our friends was
The people who have come into our lives over these past few years have renewed my hope in humankind, and they continue to renew it every day.
overwhelming. We felt surrounded by people no matter where they were in the world who love and care for us. As I was crying in the ER, I drew comfort knowing that understanding, kind people were there for me. Every day, they conrm my faith in the goodness of others. There are people out there who understand what you are going through. In your darkest hours, they will be there for you. They will be your strength, as our village of friends and family have been for us. You will feel the temptation to withdraw and hide. Tend to your wounds and sit for a while if you need to, but start making connections and becoming a part of our community of autism parents. This journey is too hard to make alone. From time to time, you may need to withdraw again, and this is OK, too, but do not stay away too long. You are an invaluable part of the fabric of our community, and we need you at least as much as you need us. Seek those who have made some level of peace with autism and nd comfort and hope with them. Surround yourself with realistic, honest, acceptingpeople, those who know this is hard but are still inspired to discover how beautiful this journey with their child can be. Seek those who believe in our children and each other. Together we can make amazing things happen.
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I accept my child as they are
Liberated from normal

Everyone is a genius. But if you judge a sh on its ability to climb a tree, it will live its whole life believing it is stupid. Albert Einstein One of the primary reasons you feel terried about an autism diagnosis is fear of the unknown
Forget normal. Normal is boring. You are now liberated from this normal, and this is a wonderful thing.
combined with all the negative messages in the media about autism. We dont easily handle unknowns, so we ll these gaps with whatever information is readily available. Our cups are often empty, and theres always another negative story waiting to be poured into them. For this, I only have one suggestion right now. Stop listening. Many people are just at out wrong. They dont get autism at all. They see it as a tragedy because our kids are not normal. They dont t a mold. They cant be neatly classied or graded. Even the autism spectrum itself cannot easily be dened. If theres an absolute truth in autism, its that if youve met one autistic person, youve met one autistic person. We are programmed by our culture to assume anything outside the accepted norms is broken, and that anything this challenging is misery. Forget normal. Normal is boring. Normal is just a dryer setting. Without the unique, without dierences, everything is bland and meaningless. You are now liberated from this normal, and this is a wonderful thing.
I acce pt my child a s the y are
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Making the right decisions for your child

Much of the initial advice you get when you receive a diagnosis for your child is all about the million things you need to do. Things You Must Do Right. Now. Or You Will Be A Terrible Failure. And Your Child Will Be Ruined Forever. You need to sign up for this and that and eleventybillion other things, read these 50 books, contact
Everyone knows someone, everybody has an opinion, and so much of it is complete bull.
these few hundred people, get on all these waiting lists, and it goes on and on. Everybody has a favorite therapy they want you to try, and they will tell you way more than you could possibly comprehend at this point about it. You sense they will be upset if you do not show the same enthusiasm they share, and you may be right. Its OK. Seemingly everybody even those who arent remotely qualied to do so will have an opinion about what you should do now. My neighbors sisters cousins son has autism, and they took him to some shaman in New Mexico, and now hes talking and doing great in school and everything. I kid you not. This happened. I also suspect it lost something in translation as most nonsense passed around usually does. You cannot escape this. With, at the time Im writing this, 1 in 88 children being diagnosed with autism, everybody is beginning to have some direct or indirect experience with this. The anecdotes are piling up like a tidal wave. Everyone knows someone, everybody has an opinion, and so much of it is complete bull.
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Anybody who has ever heard anything about autism will start telling you about it. And you will constantly hear the quickening drum beat ordering you to push harder and faster because time is running out for you and your child. (Its not, but thats another story.) You will quickly go numb to it all. Its too much information for one person to even begin to comprehend. Weve all been through this.
Your child is awesome and wonderful. Dont let anyone say otherwise. Ever.
And you have my permission to do one thing right now in your early days with your childs diagnosis. Ignore it. All of it. Breathe. Regroup. Get your wits about you. Start slow (but do start once youve done some good breathing and regrouping), dont be afraid to make mistakes, make the best decisions you can. Always keep one critical truth in mind. I believe we make our best decisions as parents when we always think about this rst. Your child is awesome and wonderful. Dont let anyone say otherwise. Ever.
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See the possibility

I never saw the things my child couldn't do. I only imagined what she could. Kerry Hincka Assume our children are more capable than most think they are, because its true. Always assume the best about your child. Become fascinated by autism. Hold it curiously between your ngers. Rotate it. Study it from every angle in every possible light. Its normal at the beginning to see helping your child improve enough to get beyond the autism spectrum as the hope. Let me instead paint a dierent picture. What does it feel like if you imagine your child still as autistic but overcoming many of their challenges, improving their skills, and harnessing the strengths that autism can give them? Autistic persons make countless contributions to our society every day. Even then, whether one autistic or not can 'productively contribute' to society isn't a measure of their worth. Our value as a person isn't derived from the value of goods, services, or whatever we contribute to society. I've met a number of children and adults who probably won't ever be able to work at a job or live on their own without signicant assistance, if at all. They will spend their entire lives depending on others for even the basics of daily living. But if you think their lives don't oer something of immense worth, theres a revelation waiting for you. Our children are capable of so much. Stare deeply until you see the magic, the possibility.
Our children are capable of so much. Stare deeply until you see the magic, the possibility.
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Acceptance and hope

I dont know how to make this any clearer. Accepting autism is not giving up. Acceptance lets you focus on the essential. Acceptance helps you start letting go of the weight you
Acceptance is not the opposite of hope. Acceptance is hope.
carry as a parent. Acceptance helps you conserve emotional energy. Acceptance acknowledges that you have no enemy. Acceptance helps you realize your job isn't to x your child but to help them overcome challenges. Not accepting means you have no idea what therapies are likely to succeed and which are not because you feel like you have to try everything. Not accepting leads to much less awareness of what is really happening to your child and you. It makes it harder to make sound decisions. A lack of acceptance can lead to desperation. Acceptance is not the opposite of hope. Acceptance is not the opposite of being the kind of parent who ghts without ceasing for your child. Acceptance does not equal doing nothing. Acceptance is not giving up on a brighter future. Acceptance allows you to do the right things. Acceptance means ghting your ass o because you know what is required. Acceptance means embracing the future by investing yourself fully in the now. Acceptance is hope.
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e same today as yesterday
The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart. Helen Keller
Look into the eyes of your child. Look through to their wonderful, beautiful soul. Take a deep breath. Then another. Take as many as you need until you see. Their challenges are enormous. Unless you are autistic, theres no way you can begin to understand. But they are beautiful beyond words. Remember one of the best pieces of advice I ever received. The child you take home with you from the diagnosis is the same wonderful, perfect soul you have loved more than anything long before the word autism became part of your life together. Pull out pictures from before the diagnosis and put them next to pictures from after. What do you see? That same perfect child.
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Prepare a way for them

Some things for whatever reason will come easy to them, but a whole lot of things will not. This keeps us awake many nights and fretting most days. Thats not a judgment upon our kids at all. Were parents. We worry. Thats our job. We worry and stress because we want things to be easier for our kids. We dont want them to have to
We dont need to change them to fit the road. We need to change the road so they can travel to whatever destination they are meant for.
struggle so much. We would lift their burdens from them if we could. But we often cannot, and that leaves us feeling powerless. That is why we worry. Its easy for every new accomplishment to turn us into addicts in search of our next achievement x. Our days so quickly rise and fall with them. Its so hard to let this go and just let our kids be kids who are on their own timetable and who will get there in their own way. Our children are full of possibility and wonders we havent even begun to comprehend. Our goal is to clear the road in front of them as best we can. Clean o the rocks and debris. Fill in the potholes and smooth out the bumps enough for them to get through. Build bridges across places they cannot cross on their own. Put up signs to guide them and warn them of dangers. Plant trees to make the way more beautiful. Install lights so they can nd their way in the darkness. We dont need to change them to t the road. We need to change the road so they can travel to whatever destination they are meant for.
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My moment of revelation
I nally got it for the rst time a few months after Jonass diagnosis. I was watching him go back and forth in his swing, laughing and smiling at the world going by. He glided toward me and away from me and back again. The air owing over him eased as the swing gradually slowed toward rest. He icked his eyes toward me, away, back again, and then down to my shirt. He grinned with anticipation, saying Mo-mo-guh-go! the rst two-sound phrase hed ever said. He tilted his face to the heavens, full of trust in the world as the swing rocked his sensory-weary body toward a rare, precious peace. I grabbed the swing and pushed him back toward the now-blue sky. He apped his arms as if he were dreaming of ight. A wandering cloud moved out of the way and revealed the morning sun. I closed my eyes but saw that its light still shone through. I could still see everything. And I saw with absolute clarity how wholly wonderful, beautiful, and unconditionally perfect he is. The world was still, save for his laughter, and the wind became perfectly calm. I could feel the weight of my body nally relax toward the earth, the reassurance of the solid ground rising to meet me. In my dreams that night, I saw a clean, fresh, white page rolled out before me. The wind howled around me, but the page did not move. I plucked a pen from the air and planted it squarely on the paper. One by one, letters appeared: Mo-mo-guh-go! For that moment, it was enough, everything. Then I turned directly into the howling wind, gritted my teeth, and took one, single, determined step. More! Go!
And I saw with absolute clarity how wholly wonderful, beautiful, and unconditionally perfect he is.
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Celebrate each wonder and victory
Over time, the cup of your heart will fill with these wonders. You can drink of them when your days feel long, tough, and empty.
Celebrate every victory, big or small. Every achievement is hard won. Throw a little ve-minute party for every one when they come, or just breathe deeply twice and appreciate how wonderful the moment is. Oer words of thanksgiving to whomever or whatever your beliefs point you to. Practice this every time. Over time, the cup of your heart will ll with these wonders. You can drink of them when your days feel long, tough, and empty. In time, may your prayers or meditations become a single word. Wow!
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I accept myself as I am
Be honest with yourself

It's highly unlikely that you're feeling OK right now, and thats completely normal. You dont need to pretend youre something youre not, not to anyone else and especially not to yourself. Cry out to God, the Cosmos, the trees, a brick wall, a dear friend, your cat, dog, ferret, or any convenient animal, or to whatever, and let it all out.
You are who you are, an imperfect being with a huge challenge in front of you.
Just please, dont lie to yourself. Heres the secret we arent all that proud of. We all come to these rock bottom points even if temporarily. We may nd ourselves there more than wed like to admit. Youll hate autism. Youll hate everyone and everything. You will want to take leave of your family and the world. You will want a lot of things you arent proud of. You feel what you feel. It takes entirely too much energy to push emotions away or judge yourself for feeling them, energy you do not have to spare. The path forward comes from honesty. Theres no point in lying to yourself and forcing yourself to think youre OK, or should be OK, when youre not. And theres no point either in beating yourself up for what you do feel. Get help when you need to, but always be honest with where you are. You are who you are, an imperfect being with a huge challenge in front of you. Lets start from there.
I acce pt my s elf a s I am
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Its not your fault

Lets get this out of the way because I know youve been thinking about it. Its not your fault. You need to start practicing saying this to yourself, over and over again, right now. At the beginning,
Looking for something to blame is a lot simpler and more satisfying than the alternative sitting and dealing with our fears.
its natural to want to nd someone to blame. Youre angry, tired, freaked out, and staring at a vast unknown. Youll look for someone or something to blame. People will give you no shortage of targets to focus your hostility and fear on. Whether it is accurate to blame anything in particular and it usually isnt is beyond the scope of this book. But I will tell you what I believe to be the truth of why we do this. We are all afraid. Looking for something to blame is a lot simpler and more satisfying than the alternative sitting and dealing with our fears. But its not sustainable. You will never move on until you can say, I am afraid. Now what? Its inevitable that youll turn all that blame and guilt on yourself. It seems like a study is published every other week blaming autism on maternal or paternal age, whatever mom consumed during pregnancy, or whether you were facing south when your child was conceived. Time and time again, these studies are shown to be shaky at best and complete and utter nonsense at worst. Regardless, they all serve the purpose of adding fuel to the res of our personal guilt.
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Its not your fault. Just keep saying this. Stand in front of a mirror. Repeat.
Your child is who they are. Neither their future nor yours has been written. And therein lies your hope.
I hope that in time youll come to understand that the concept of fault is one you should let go of too, but this takes longer. I have never met anyone who helped their child by turning their anger toward autism and whatever it is they think caused it. Weve all done it, and I think nearly all of us have to go through this. But there will come a point, reasonably soon most likely, where youll have to start letting it go. We can't hold on to anger and cynicism forever. We need a vision of hope, a future, something to strive for. Autism simply is. Your child is who they are. Neither their future nor yours has been written. And therein lies your hope. You get to discover and write that future together. You wanted to be the perfect parent, or at least close to it. You wanted to be the person people look up to. You wanted to prove those annoying people who thought you wouldnt ever be parent material wrong. If nothing else, you want people to look at you and think, Man, they sure got their crap together. Stop. Just stop.
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Its OK to make lots of mistakes

Heres the good and bad news. You are seriously going to suck at this for a while. Thats normal. You will likely feel to a large extent incompetent from here on. You wont really be incompetent, but you probably wont believe that. This is good news. Embrace it. How is that good news? Glad you asked. You are free to make a lot of mistakes. That freedom is essential because it is only through making a
You dont have to be perfect, just determined.
lot of mistakes that you will learn the mountain of stu you need to learn to be an autism parent. You can only do this well if you do it really badly at rst. The most eective way to learn a new language is to immerse yourself in it. Go to wherever they speak it natively and dive in. You will make tons of mistakes and spend what seems like an eternity having no idea what is going on. Then youll learn, in no small part because you have to. If you get past the fear of the unknown, even just a little bit at a time, you will learn. No one knows everything about what theyre doing before starting something new. If they did, it wouldnt really be new, would it? Just start, and see what happens. The knowledge, wisdom, and experience will come. Failures and setbacks become our best teachers. You dont have to be perfect, just determined.
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e new abnormal
Unless youre one of the rare souls lucky enough to avoid this, people have expected all sorts of things from you your entire life. Family and friends have given you endless opinions about what you should do with your life. Your parents had expectations about what you'd grow up to be, and perhaps they still do. School was almost entirely about conformity. Schools and colleges try to crank out dutiful students who manage to check o a long list of boxes on their graduation to-do list. The promise was that as long as we did enough to construct a viable resume without being too weird, we could probably land a job eventually as an entry-level whatever and work up from there. If we did competent work within acceptable norms and didn't rue too many feathers, we'd eventually be handed more things to do and theoretically get a few promotions. Wed end up married with a couple of kids and a nice enough place to live and start the process over again with the next generation. Typically we gain acceptance and praise from our family and peers when all this happens the way they think it should. In other words, our lives are most rewarded by others when we live within the middle of the human bell curve. If you read those paragraphs and thought that kind of life sounded depressing, good. Youre already getting the point. And here's the one thing most of us haven't given ourselves permission to say in the face of these expectations.
And here's the one thing most of us haven't given ourselves permission to say in the face of these expectations. Screw. That.
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Screw. That. Congratulations! Being the parent of a special needs child has made a whole bunch of decisions for
You are now liberated from normal. Actually, you've been evicted from normal.
you. You got your permission to stop being normal, to stop tting in, and to stop living in the middle of the bell curve. And you have no choice but to use it. You are now liberated from normal. Actually, you've been evicted from normal. OK, well, actually, there was no such thing as normal to begin with. We all bought that lie. You've been liberated from that lie, too. The fortunate reality for you is that almost nobody sits around thinking about you all that much, if at all. If you really were one of those with-it folks, people probably wouldnt like you anyway. People may think the Cleavers are some sort of ideal family, but no one really wants to hang out with them. Measuring is for rulers, and this is pretty much what it amounts to. Our need to measure up rules us. We live under a tyranny of charts and missed developmental milestones trapped beneath the bell curve. And we need to stop it, now more than ever as autism parents. Throw out the calibration charts for both your child and yourself. They are oppressors anyway. Its time to be free.
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Made whole
For most of my life, I rarely t in. Ive never admitted this in print before, but I was often badly harassed and bullied as a kid. I saw all of my various personal and social shortcomings as weaknesses. Most of my strengths like academic skills werent ones valued by my peers. Ive never felt comfortable in my own skin. I often feel completely out of phase with the world around me.
As autism parents, regardless of our personalities and histories, we simply dont fit in very well with the general population of parents in the world.
I judge myself about most everything. Im often awkward and typically uncomfortable in social situations unless Im among friends. I confess that I am usually ambivalent about meeting new people. Going to parties can drive me crazy. I am rather awful speaking in public without notes. I dont like leaving home for more than a couple of hours. I am easily distracted and have a hard time focusing on anything for very long. Sometimes I completely freak out as a result. Im disorganized with most of the day-to-day stu of life. I struggle with criticism. Our house looks like a war zone, and a lot of that is my fault. I could go on and on. I dwell on these and many more every day. While your list of things you dont particularly like about yourself may vary from mine, most of us do have such a list, and probably a lengthy one at that. To be honest, it felt rather therapeutic and cathartic to write all that out. Im a bit surprised that after re-reading the above, I feel more compassion toward myself. As autism parents, regardless of our personalities and histories, we simply dont t in very well with the general population of parents in the world. I know its hard at rst to accept this, but its part of our reality. Our concerns are often more intense. Our focus is on so many dierent things, few of which are remotely understood by your average parent.
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But we all bring the sum total of our lives to being an autism parent. Every strength and weakness comes to bear. Memory after memory that has haunted us throughout our lives will rise to the surface drawn by the sheer magnetic power that autism parenting radiates into our lives. Perhaps you hoped to never have to think about those things again. I know I didnt. I see Jonas walk into school. He will say Hi to his teacher and then meander his way down the hall to his classroom. He doesnt talk to other kids or even really acknowledge they are there. For the most part, they dont seem to notice him either.
But we all bring the sum total of our lives to being an autism parent. Every strength and weakness comes to bear.
This often makes my heart shatter as I have ashbacks to my childhood and not tting in. I remember being bullied in the halls of my school. The waking nightmare of that happening to Jonas ashes into my brain like a stake through my skull. Part of my soul dies right there at the front door. Then I do the only thing I can do breathe. That person I was then is the parent I have now become. I may not understand all the challenges Jonas faces every day, but my heart lls with compassion for the boy I once was and the son I have been entrusted and blessed with. I have grown into an adult who has proved I was far stronger than I gave myself credit for. Perhaps I needed to feel and fully appreciate feeling so lost and afraid in order to see how far I have come and how much I have grown since then. And I know for sure that Jonas is even stronger still. Learning to accept myself as a person and an autism parent has been an agonizingly slow process, but somehow I have gathered up all the seemingly mismatched parts and pieces of my life and discovered they have forged into a transformed whole. I have arrived here by the only way I know, and a day at a time I am learning to accept that this will be enough.
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See your life as it is and accept it

Concentrate on what is rather than what you think should be. Life is full of what we or others think ought to be. The end result is that were rarely satised with our lives as they are right now. Im not saying that you need to be all Buddha-like in your oneness with how spiritually mind-blowing your life is. What I am suggesting is that you look at your life and try to really see it, truthfully and clearly. Once you do this, you can begin making decisions about where you want to go next. Let me say this part again. Accepting autism and your life as an autism parent isn't giving up. It is seeing your life right now as it really is and being as at peace with it as you can be. Its no more giving up than accepting the fact that because you cant run more than a mile or two right now means youre giving up nishing a 5K or a marathon someday, or accepting that youre in debt up to your eyeballs right now means youre giving up ever digging out of it (even if you feel like it). Acceptance is simply being honest with yourself. If you want to sit in a chair and eat a whole bag of Oreos because you feel like dirt, acknowledge thats how you feel without judgment. You dont have to actually go scarf down a bag of cookies, but
Accepting autism and your life as an autism parent isn't giving up. It is seeing your life right now as it really is and being as at peace with it as you can be.
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who am I to argue with you if you do? If you then feel like a horrible loser because you want to eat a bag of Oreos, acknowledge thats how you feel too. Then do something kind for yourself. Eventually this practice will begin to help. You are not a horrible person. There is nothing wrong with
You are good enough. Trust me.
you if you feel like crap and want to eat a few thousand M&Ms for comfort. Its perfectly normal to want to leave your kids with the neighbors for a few days and faceplant in a bed somewhere and sleep. Were on an emotional roller coaster. Lets not make it worse by judging ourselves for it. Breathe in, then breathe out. Do your best to let each of those emotions oat away with your breath. If that proves too hard, just breathe and focus on your breathing. Thats it. You are not required to do anything else in this moment. Just breathe. Breathe. Rinse. Repeat. You are good enough. Trust me.
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I choose love over fear
We are all afraid

In case you didnt catch it earlier, lets get this out in the open. We are all afraid.
Why are we so afraid? Every minute of every day we devote ourselves to our children... We are afraid that our absolute best might not be good enough.
Youre afraid. Im afraid. That parent over there is afraid. The parents you see at your childs therapy oce are afraid. The parent you think has all their crap together is afraid. We are all afraid. Why are we so afraid? Every minute of every day we devote ourselves to our children. We are trying to help them walk up a mountain so high that we cant even begin to see the top of it. And we are afraid that, even in spite of all of our best eorts, we might fail them. We are afraid that our absolute best might not be good enough. We are afraid that things might never get easier for them. We are afraid people will reject them. We are afraid that they will not nd love or someone special to love them in return. We are afraid they will not be able to graduate or nd employment or live independently. We are afraid they will suer in a constantly hostile world. We are afraid that our bodies and souls will give out and explode because we are so tired, stressed, and desperate. We are afraid we will die and no one will take care of our children. We are afraid of all these things and ten thousand more.
I cho o s e love ove r fear
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The stakes for each of us are incalculably high. We are talking about our children, our beloved. To fail them is the worst thing we can imagine. Because we can imagine it, we are scared out of our minds.
Fear can grind us into dust...We are each fighting a great battle, and we are afraid were going to lose. But we wont.
As autism parents, we disagree on many issues. But if there's one thing we all have in common its these things were afraid of. When we turn this into passionate energy to advocate for our children, we are unstoppable. When those fears lead us to strike out in anger, we tear each other down. When they consume us, we cant make good decisions for our children, deal with all the people and institutions we battle with every day, or make sense of all the information that bombards us. Fear can grind us into dust. Theres nothing at all wrong with being afraid, but when it severely compromises our ability to parent and advocate, weve got real problems. This happens to us a lot more than we want to admit, especially at the beginning. Were all tired, and we cant spend our limited energy on anything thats not working for our children and the positive change they need in the world in order to succeed. Acknowledge and accept that you are afraid. This is OK. Youre among friends, and were all afraid. Practice compassion with these fears, to yourself and others. We love our children more than anything, including ourselves. Lets work on nding ways to let love expand so we can best take care of our children, our families, ourselves, and each other. Let us choose and re-choose love over fear. We are each ghting a great battle, and we are afraid were going to lose. But we wont.
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Dont choose out of fear

We make so many decisions out of fear. We regularly choose therapies based on fear of not doing enough, not doing the right things, or missing out on something that might be the magic ticket our
Say to yourself, Other parents have gotten through this, and so will I.
child needs. We completely miss the fact that there is no such thing as a magic ticket, and there are many right ways to care for your child. People will try to guilt you into all sorts of things. Resist. Pause. Breathe. Say to yourself, Other parents have gotten through this, and so will I. Breathe again. Wait. Listen.
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Name your fears

Fear is such an abstract concept. You need to know what youre facing. And heres the best way I know to do that. Name your fears. Be absolutely specic. Write them down on slips of paper or index cards.
Naming fears gives you a measure of control over them. You cant deal with vague challenges and obstacles.
We fear all sorts of things. Write down everything you're afraid might happen. No fear is silly or ridiculous. You may start to breathe hard and feel anxious as you do this. Try to slow down your breathing, and then breathe deeply. Stay with it. Push beyond the fear. Naming fears gives you a measure of control over them. You cant deal with vague challenges and obstacles. You dont have to come up with solutions to these fears right now, and its very likely you wont have to ever come up with them at all. For now, just get them out in the open. Perhaps you fear youll become nancially destitute, your child will never talk, your child will never be in a classroom with their peers, or your school system sucks so badly that your child will never get the education they need. Perhaps you feel like youre going to lose your career, your child will require more than you have, there wont be anywhere near enough services available, or youll be exhausted and burned out for
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the rest of your life. Maybe you feel like youll lose your friends and social life, your family will shun you, and youll have to do all this alone. These and all the other ones like them are completely valid fears. I cant promise they wont come to
Name your fears so you can understand them, so they'll have less power over you.
pass. In fact, some of them may in some form. The point now is to name them and own them. Then write down what you think is the worst thing that could happen as a result. Be specic and honest. Are you afraid of going bankrupt and becoming homeless? Are you afraid of a nervous breakdown, the breakup of your family, or overwhelming loneliness? Usually our fears are based on some possible outcome that terries us. Name these and own them, too. The good news is that what you fear may indeed happen, but these worst possible outcomes often do not. Even if they do, you will discover strength you didnt know you had and a community of people to help you through. Name your fears so you can understand them, so they'll have less power over you. Acknowledge what you see as the worst outcomes, and then realize you can probably survive most of them and the much less worse things that will comprise your future. Meet them with strength. See them clearly and completely. Bring them out into the light of day.
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Your life is uniquely yours now

You will look longingly at the activities of other families, families that are going about their
Jealousy is normal, but it can become an animal.
seemingly normal lives all around you. Even the simple act of watching another child verbally ask their parents for something or pretend that umbrellas are lightsabers makes you keenly aware that you're on a dierent path. Jealousy is normal, but it can become an animal. Try not to feed it any more than necessary. Jealousy after all is fear, fear that there wont be enough. Simply say, I feel jealous, then try to release it. These lives of other parents are not your own. You will feel sad about this for a while, but this is also a positive realization. Your life is uniquely yours.
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Tell a new story

Tell your story. Tell your childrens stories. Tell the world of the wonders you have seen. Tell them what
Tell them of your pride. Tell them of your love.
its like to savor each word your child learns to speak aloud. Tell them what it feels like to rejoice when your childs face bursts with light when they nally climb over their mountains of challenges and achieve the once impossible. Tell them about your childs smile. Tell them of your pride. Tell them of your love. The only thing that will ll the cracks and illuminate the dark places in life is love. Always begin with love, not fear. As much as possible, do everything out of love, not fear. I have begun to see what is possible. This is what Jonas has taught me, what being his parent has enabled me to nally see. Often the way beyond fear is to simply tell a new story. Proclaim even if its to yourself in the mirror that love is stronger than fear. Proclaim all the ways your child is amazing. Let that power ow through you and ll every empty crack and hurting wound.
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A brave new hope

Dum spiro, spero. While I breathe, I hope. Cicero I have been asked numerous times by parents just receiving a diagnosis for their child whether there is hope, hope for something specic in their child's future. Is there hope she will grow with enough therapy and school to be considered no longer on the
You desperately want to know. You want anyone to tell you it will be OK.
autism spectrum? Is there hope he will be in a classroom with his peers when he gets older? Will she be able to live on her own when she gets older? Will he go to college and someday have a job, get married, and have a family? All of these questions are so poignant. I remember well the frightened place they peek out from behind. It's almost impossible when your child is this young to have any perspective on the future at all. At age 2 or 3 or at any time really, you don't know what they'll be doing a week from now let alone years down the road. But you want to know. You desperately want to know. You want anyone to tell you it will be OK. You don't care if they are lying to you. You want your child to have a bright future, but you can't yet conceive of what that might look like with autism. So you despair. To be honest, a part of us always remains there. Our questions about hope do change, our perspectives evolve about what hope is, but our commitment to helping our children grow into the fullest expressions of themselves never changes.
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We are ingrained with all the traditional stories of growing from childhood to adulthood. There are endless stories about 'normal' childhood lled with all the typical things kids do. But there are hardly any stories about our kids, and that scares us. We feel like were ying blind into the unknown. The stories we do hear about autism are all the dramatic ones in the news, features, and
Hope isn't a specific outcome. Hope lives in what is here with you right now.
documentaries. After all, documentaries are only done about people who fall well outside what has been declared the norm. No one does a lm about Saturday afternoon t-ball games or a trip to the store. We live in a sort of ongoing documentary. We are real reality. No one has or can write the story that will come next. But this is the hope we think we want. We want to know how this story is going to turn out. We want to know that our kids will get the happy ending. It's what all parents want, it's just that most parents are making their way through well-charted waters. We're just making it up as we go along. All that unknowing, absence of direction, worry, fear, and complete lack of predictability feels like the opposite of hope. We simply want to know that even if we have to bust our asses to get there, if we do the right things, it will all work out in the end. But here's the thing I learned that is now saving me a lot of grief and pain. Hope isn't a specic outcome. Hope lives in what is here with you right now.
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When hope is no longer tied to a destination, its free to become a way of being. It doesn't have to
Believe in your child. Believe in the right now. Believe in your family. Believe in the talented people working with your child. Believe in yourself. This is where hope lives.
live in some future you can't predict or control. It can live right here, right now. It can live in your home and in your family. What has happened is done. What will happen is as yet unrevealed. Spending too much time and energy worrying about either will not get you anywhere. Trust me. The future will take care of itself somehow. Who knows whether it'll be the future you originally wanted or dreamed of. Well, I take that back. It won't be. It never is, regardless of whether your child is autistic or not. But I have discovered that the future has turned out far deeper, richer, and more meaningful than I could have ever imagined possible. Focus on loving your child, your pride in them, and what you can do today to help them overcome the challenges in front of them right now. Enjoy your child and how they grow and learn and experience the world. Believe in your child. Believe in the right now. Believe in your family. Believe in the talented people working with your child. Believe in yourself. This is where hope lives.
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e moment I nally believed

It was a few days before Thanksgiving in 2011. After over six years, Jonas started stringing a few syllables together. Just a few, but he started doing it, slowly but surely. It rarely exceeded three or
Hes going to tell us about wonders we never imagined possible.
four halting words, but he was nally doing it. After so long doubting that he would ever really talk, we arrived at a moment of pure hope. I pulled the car into the garage after picking Jonas up from school. As the garage door lowered, I put my head on the steering wheel and started to sob, tears welling up from a place of awe and joy. These words came to me through those tears. I believe it now. I really believe it. Hes going to talk, and hes going to tell us about wonders we never imagined possible. Even if he never did talk, would it change how dear he is to me, how much I love him, how much I will cheer for him, how much I will ght for him, how awesome he is and will be? Not one bit. But I see how hard he works at trying to communicate verbally. I see him get so frustrated and upset at being unable to get his point across. It breaks my heart into pieces. I want to know how he feels, what he thinks about, how he sees the world. I want desperately to nd some way to unlock his voice. I dont care if thats via his own voice box, a device, or something else. He tries so hard to gure out how to use his own voice.
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Some words are shortened some to the point they sound like rapid, breathless speech. Some syllables vary greatly in length and use stresses you arent used to hearing. His inections may be all over the place, though they sound almost melodic. But you know, it doesnt matter how he does it because theres no one right way. This is the purest music to us. Hes creating his own verse with rhythm, tone, and meter all his own, and he continues to experiment and improvise. What hes doing now sounds like jazz. No, it is jazz. He experiments with the notes. Hes nding his own way. Hes making it up and discovering it as he goes along. He is the musician here. So much of this is his journey of discovery. And hes doing it. Hes really doing it. He takes verbal steps slowly, carefully, daringly, but he keeps at it, laying out one syllable after another. He lines them up like whirling dervishes, dreamy sloths, or slippery snakes, not going where he wants them to yet, but indeed they are going somewhere exciting. What he sees and feels and thinks is unique in all the universe. I want him to be able to share that with whomever he wishes. And now these little rays of sunshine are poking through. It was in the garage in that moment when I nally believed. Its going to happen. Somehow, in whatever way is right for him, its going to happen. I see his face beam when he does get the words out. I see his whole body rejoice when he is heard and understood. If there is anything that makes my heart sing more than seeing this in one of our children, I dont know what it is.
What he sees and feels and thinks is unique in all the universe. I want him to be able to share that with whomever he wishes.
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And most of all I see it in his eyes. He now believes it, too. Its going to happen.
I want him to believe in himself. I want him to know that he can find a way to do whatever he seeks to do, no matter how long it takes.
I want this as much as anything. I want him to believe in himself. I want him to know that he can nd a way to do whatever he seeks to do, no matter how long it takes. Forget however long it takes for anybody else. I want him to know that what everybody else is doing or not doing doesnt matter. This is his journey of exploration and discovery. He may have to take paths less travelled, or blaze his own trail through sheer force of will. Theres magic out there to be found. But slowly and surely over these years, its happened. One syllable at a time, he has pulled himself up this Super Everest. Im still not sure how all this will turn out, but hes made a believer out of me. He has that eect on everyone. After so long, I believe it now. This is why I choose love over fear. He opened my eyes and my heart so I could see. He taught me to believe.
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I am as ready as I need to be
We learn as we go
The title of this chapter isnt I am ready on purpose. You will never be ready. This is true for nearly every single thing in your life. We just dont want to admit it. We have heard since childhood, Ready! Set! Go! However, out here in real life, it doesnt work that
You dont have to know it all to get going.
way. I prefer instead to say, Ready enough! Go! This is especially true for our lives as autism parents. There are always more things to learn, puzzles to solve, paperwork to ll out, challenges to overcome, worries to deal with, paperwork to ll out, fears to address, plans to create, and more paperwork to ll out. Its an ongoing part of your life now. Many parents you meet whove been at this a while will seem like they know way more than you, and this may be true for right now. Its easy to think we veterans know everything, but we dont. We all got to wherever we are the same way you will: hard work and time. Its not magic. It never was. No one handed any of us a manual, particularly since there isnt one. Autism is lled with so much that we do not know. Anyone who says otherwise is selling you something, and in particular, selling you something that doesnt work. Were all out here learning as we go. You dont have to know it all to get going. If you need to, take some time, regroup, breathe a lot, then begin. You dont need to learn everything right this minute. You cant anyway. Its impossible.
I am a s ready a s I need to be
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You dont have to run yourself into the ground doing items on your autism to-do list every waking
Wherever you are right now, you are ready enough.
minute of the day. You will burn yourself out. Pace yourself, take care of yourself, sustain yourself. Theres no substitute for education, work, patience, and time. Theres nothing that will help your child more than love and commitment. These things you can handle. The rest youll gure out along the way. Wherever you are right now, you are ready enough. Go!
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Your best will be enough

You can only do the best you can, but youll nd that your best is a lot more than you think youre capable of. Reach out for as much help and support as you can get, learn as much as you can, and do
We are testimonies to each other that you can and will make it.
what you are able to do. You may work at all this for weeks and months and feel like real improvement is never going to come, and then one day, out of the blue, it does. That renews our energy so we can start on the next thing. Like hard exercise, the work you will be doing will toughen you up. The key is to get tougher without your soul hardening. Its easy to despair about how you can keep surviving this for the rest of your life. But all of us together over the continuum of years have been doing this, and we are testimonies to each other that you can and will make it. We keep moving along steadily. Something will come along to give us our second wind or our thousand-and-second wind. Just keep at it as best you can. Thats all anyone can ask of you. It will be enough.
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Always be open to beauty and hope

Sure there are plenty of systems, people, and institutions that just plain suck the life from you, whose whole purpose for existing seems to be to make life a hundred times harder on your child and you. And you cant ignore them. Its easy to get pulled down by them until youre face down in the dirt. When this happens, Ive found one thing that works well for me. Open your eyes. Down here in the dirt and muck, little weeds of grace are sprouting out of the ground, bidden or unbidden. Close to the ground is often the best place to see them. All those institutions and people who have kicked you to the ground do not have the last word. Even though they have so much power over our families lives, they are still the minority. There are people performing acts of kindness all over the place. There is beauty in the world everywhere we look. Even in the smallest of things lies hope. Whenever you are faced with the greatest of challenges and are ghting with the most frustrating and obstinate of foes, hold on to this hope.
There are people performing acts of kindness all over the place. There is beauty in the world everywhere we look. Even in the smallest of things lies hope.
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What my hero taught me about being an autism parent

I truly thought my grandmother would live forever. She was the toughest person Ive ever known. Her home was always my safe place. Her counsel was always loving and true. And when words couldnt help me, she sat me down at her table, cooked my favorite comfort foods, and sat with me until it got better. At her 90th birthday party in 2008, she was as spry and spirited as someone a fraction her age. It was only a couple of years before that we talked her out of cleaning her own gutters. She was discussing at the party about needing to get out and powerwash her siding. She lost her rst husband when she was only 25 to health complications from him being a coal miner. She became a widowed, single mom to two kids my dad who was six at the time and my uncle who was only a few months old. She became a waitress and sometimes walked to work with a pistol in her pocket. The Kentucky coalelds were rough places. She kept a couple of pigs that became meat during the winter and traded butter she pressed in molds in return for groceries. They lived o that, biscuits, and whatever they could grow or raise. She was endlessly resourceful. I doubt she ever slept. And still, poor as dirt as they were, if any of the neighbors' kids were hungry and stopped by, she would feed them without thinking twice about it. Throughout my family's struggles growing up, she always fed us, bought us clothes to wear, and made sure we got to school. We'd play cards after school, and I'd feel content with the world. When I was in college, she would give me everything in her house when I came to visit. My car would be
She was the toughest person Ive ever known. Her home was always my safe place. Her counsel was always loving and true.
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packed full of groceries, things she had canned, a hundred rolls of toilet paper, and anything else she thought I'd need. But more than anything, I always knew that whenever I was at her house, I was safe and loved.
Make your home a safe, loving, warm place for your children.
Whatever we needed, she was there for us. I don't know how she aorded half of it. She did so much for people that the only person who knew even half of what she did was her. Cancer took her in 2010. She had already survived breast cancer, but cancer is a dark, cruel bastard. I grieve for her every day. But she is still teaching me through the wisdom she shared with me over all those years. I spent so much of my life not ready to live it out, not ready to take ownership of my life. So many things happened, and I just couldnt move on. She kept trying to tell me that what happened, happened. Now its done. Let it be in the past, and move on with your life. There are so many of her lessons I could share, but here are at least some. I hope her wisdom speaks to you, too. Your children deserve everything you can give them. You do whatever it takes to make sure they realize their full potential, even if hell itself should bar the way. Nothing is more important. Make your home a safe, loving, warm place for your children. When they walk through that front door, they need to feel that everything is OK and that everything they need is there. When an obstacle appears between you and what you're working toward, you take your sts and beat it down. Turning around isn't an option; kicking butt is. Be stubborn and persistent, always. If God made it, you love it. God don't make no mistakes.
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Making mistakes, failing, and generally making a mess of things is ne. Giving up isn't. You can't x the past. It happened; make your peace with it and move on. Your family needs you in the present, not in the past. Most problems in your life can be solved by hard work and time. Most of the rest can be solved with harder work and more time. Be direct, constructive, and honest. Dont dance around something when being honest would
Making mistakes, failing, and generally making a mess of things is fine. Giving up isn't.
make the situation much better. Life's too precious to waste time talking around stu. Be generous to the point of extravagance and expect nothing in return. She was both generous and thrifty. Somehow it works out that you get repaid manyfold. Be someone people feel they can turn to without hesitation and without shame. Be someone who accepts others right where they are. When in doubt, go have a cookie and a cup of coee and you'll feel right as rain. Hot biscuits, gravy, and some apple butter work just ne too. She wasnt one to overanalyze. She just went and did what needed to be done. The rest were details to be gured out along the way. Live your life as well as you can. Everything else you can work out somewhere down the road. She always believed in me. Now I must learn to believe in myself. Ours is a journey full of challenges, but she taught me how to overcome them. Its up to me now to live that out.
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No matter how hard, you will nd a way

There will be plenty of times youll feel like youre coming undone.
Good things happen, sometimes completely out of nowhere, even in the midst of chaos and fear.
You get angry at God. You ignore God completely. You rail at whatever you think will listen. You bargain with the Cosmos. You feel like dirt. You feel lower than dirt. You feel like a complete failure. You don't know how you will pick yourself up from the latest disaster. But you will. I once got so upset at my perceived complete failure as a parent that I tried to put my head through the composite steel door out to our garage. It still has a dent in it. It sits there reminding me. The kids run around the house passing that door as they play. They arrange magnetic letters on it now. Life goes on. The bad stu gets redeemed. Good things happen, sometimes completely out of nowhere, even in the midst of chaos and fear.
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Let go of needing to measure up

You don't have to know everything right now, or ever for that matter. You dont have to learn much
You will never measure up. So stop. Let go of needing to know everything.
ahead of time. You certainly dont have to in order to begin. You will never learn enough. For that matter, you will never get caught up. You will never feel like you are good enough. You will never measure up. So stop. Let go of needing to know everything. Let go of needing to measure up. Let go of not having any idea how youre going to manage. Let go of feeling bad about yourself because you have a hard time letting go. Practice this a little each day. Breathe in and realize how much you expect of yourself and the burden you carry as a result. Breathe out and visualize letting it go. Keep practicing. It will help. You will still work hard and learn because thats what you do now. The hurdles will be there no matter what. You cannot prepare for the ups and downs of life that much anyway. Life can change within moments. Just go with it with all you have. You will nd what you need along the way, somehow, some way. Grace in all its forms will meet you along the way when you most need it.
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Your child will be your greatest teacher

Before Jonas was born, I admit that I wasnt a very optimistic person. I usually didn't believe something would work out until it actually did. Finding Mary and getting married had already
They have opened my eyes, ears, and especially my heart. They have made me a better person.
changed me, and all for the good. Yet a big part of me remained aected by this sense that I was meant to do something, but I could never gure out what it was. I wasnt sure I ever would. Then Jonas came into my life, and everything started coming into focus. Jonas and Eli have each become teachers to me. Both our kids make me a better person, and I hope I am able to do the same to them. Together we strengthen each other so we can make a lasting dierence in the world. Without them, I wouldnt be a fraction of who I have become. They have taught me to believe in the goodness in things I can't see yet, the "hope in things not yet seen." They have taught me how to dream and be brave. They have shown me how the dicult times get better through perseverance. They have taught me to take nothing for granted. They have taught me how to truly and deeply see things like the beauty of the little holes in leaves that I would have missed without them. They have taught me to marvel at how brilliant and wonderful all children are. They have opened my eyes, ears, and especially my heart. I know your child will teach you the same thing. You will teach each other, and somehow it will work. This is something I truly believe, and I will stake my life to it forever more.
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I am a superhero
e source of our superpowers

We. Are. Awesome. Trust me. I know you probably dont feel that awesome right now. Most of us who have been at this a few years
None of us are born with special parenting powers... We are able to do it because we are parents. And so will you.
often dont feel that awesome either. As hard as it can be to see our own amazing abilities, you dont need to look far to see what Im talking about. If you cant see your own superpowers, look at the other autism parents around you as you get to know them. You will marvel at them and the way they seem to manage everything. They may seem rather frantic or harried, but functionally so. You hear them recount everything they deal with and have no idea how they are even awake, upright, and speaking in semi-complete sentences. You think to yourself or maybe even say out loud to them I dont know how you do all this. We hear this all the time. We often dont share our secret, but I will with you. None of us are born with special parenting powers. When people say that we were given special kids because were special parents, that is just nonsense. We are able to do it because we are parents. And so will you.
I am a supe rhe ro
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At its core, it really is that straightforward. When you love your child ercely, you will do what it takes
You are an autism parent, and you will not be stopped.
to help them become the person they were born to be. You may feel like falling over and not getting up right now, but you will nd the strength and wisdom that are required. Even if today is not your day, your power will return. You are an autism parent, and you will not be stopped.
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Why you are a superhero now

You don't have to be a hero to everybody. But you already are the hero to your wonderful child.
I wish I could show you, when you are lonely or in darkness, the astonishing light of your own being. Hafiz
Superheroes dont have to be people with special powers who can y, dodge bullets, or shoot lasers from their eyeballs, though admittedly any of those would come in handy. Perhaps we are the kind of superheroes who are like Hobbits or Luke Skywalker. Were the underdogs who simply dont let not knowing what were doing and a seemingly impossible pile of challenges stop us. We trust that somehow we will be enough, even if almost all of us dont believe it. And when we cant trust, we just keep moving. Its not really glamorous, and nobody hands out capes and tights, though perhaps they should (the capes at least). You are a superhero because the word autism will not scare you. You will stare into all the reports, forms, and statements about them and still see your awesome, perfect child. You will feel fear, of course, but you will not back down, you will not quit, you will stand your ground.
I am a supe rhe ro
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How heroes are made

In so many movies, the hero begins their path with soaring music and all the theatrics that come with the choice that will forever set the course of both their destiny and that of the entire world. News ash: Real life is not like this. (But if it were, Id want James Earl Jones to narrate my life.) We are the kind of heroes who begin in anonymity, with few, if any, people around. There is no dramatic music score. There are no special eects. No one is going to write stories about us. But there is still bravery and resolve. We begin to believe that there is so much more out there. We see the immense odds against us, but we choose the right path anyway because what we hope for is stronger than what we are afraid of. These are all the elements of the birth of a superhero, perhaps even more heroic because its done without anyone there to see it. Besides, we are real people living real lives without the benet of a scriptwriter, yet we still choose the heroic path. My moment came on a couch in July 2010. I felt absolutely broken and shattered. I was exhausted, suering from tremendous back pain and headaches, and completely burned out. It was like driving into a wall, having the wall fall on top of me, and then just staying buried there, completely unable to move. Burnout changes you into a complete, selsh jerk because you turn within yourself in search of something anything to live o of. Its a vicious cycle, a black hole the worse it gets, the worse it gets still. You eat yourself alive until you start feeling like just a shell.
What we hope for is stronger than what we are afraid of.
I am a supe rhe ro
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Worst of all, I had almost stopped caring. I was losing patience and compassion with everyone and myself. The only struggle I could see and feel was my own. I couldnt step outside myself even a fraction to empathize with what the kids or Mary or anyone else in our lives were going through. I was losing all appreciation for the wonders and joys in my own house, the goodness of people, all the living saints we spend time with and read about and interact with every day. I had withdrawn into myself. I dont say this to beat myself up. I say it as a realization that I was in a place I couldnt remain, so maybe some of you will see it in your own lives. I knew I couldnt live like that any longer. Mary and I left the kids with my sister for a week, and we literally retreated from the world. We found a remote cabin in the woods in hopes of discovering a way back to ourselves. For almost four days, about all I did was sleep, eat, watch some TV, and pop Vicodin for my back and headaches. I spent most of the day in the bed or on that couch. Near the end of those four days, I began to see again. I saw the good things in our family, the dear people in our lives who help us and want us to succeed, all the gifted and compassionate people who commit themselves to Jonass success, and all the stories we were yet to write together in the future. And I realized how much I wanted to be around for that future. I didnt just want to be there, I wanted to be as fully alive as I could be. I wanted to be strong enough to be the kind of dad and husband I wanted to be. So I decided to do what I needed to do to change. I imagined myself as the dad and husband I wanted to be, and I thought about what I had to do to become that person. I started to try to live my life as if I was that person.
I wanted to be as fully alive as I could be. I wanted to be strong enough to be the kind of dad and husband I wanted to be.
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I saw my identity, and I accepted it as best I knew how. I accepted my responsibility to become that person. Superman, Wonder Woman, Luke Skywalker, and whoever else, they all did that. Most of us will face those decisions on our own and without fanfare. The fate of the universe doesnt hang in the balance. Yet that does not make the decision any less heroic. When we returned home, I started jogging, changing my diet, and doing what I could to focus more on what really mattered. Lacing up my running shoes for the rst time and hobbling out the door was a heroic act. I jogged barely two miles, very slowly. I hurt for days. Yet it changed everything about me. I had accepted responsibility for my life, my future, and my identity. I saw who I wanted to become, and I took the rst steps toward it. Less than eight months later, I crossed the nish line of my rst marathon. I was so exhausted I couldnt walk. I fell apart in tears. I cried because I knew where I had started on that couch and how far I had come to make it to that nish line. And I saw beyond that nish line a life of possibility laid out before me. A volunteer at the nish line handed me my nishers medal and one of those silver, reective, foil blankets to drape around me. There I stood, tears in my eyes, hobbling through the nishing chute, falling into Marys arms. I had a medal and a cape. I was in the arms of the love of my life. I knew in that moment that I could do anything.
I saw who I wanted to become, and I took the first steps toward it.
I am a supe rhe ro
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e path of the superhero

Most superheroes dont go out seeking to be one. Circumstances in life place that decision before them, and often the decision is a choice between nothing but hard choices.
A superhero knows the long odds and the work it will take but always chooses hope, no matter how impossible it seems right now. And so must we.
The road of the superhero is hard, but it always contains a glimmer of hope. This hope comes with the requirement that you will have to work your ass o against seemingly impossible odds with no guarantees. A superhero knows the long odds and the work it will take but always chooses hope, no matter how impossible it seems right now. And so must we. You start by accepting your superhero identity, like Wonder Woman leaving home to go on a mission of peace to the world or Luke Skywalker staring out at the two setting suns and deciding to become a Jedi. Then you go live every day as best you can. I imagine some days Superman sat around and watched TV and got a little laundry done, and maybe Wonder Woman took her invisible jet to get the oil changed. Luke Skywalker spent at least two movies worth of time whining about everything. Its not all triumphs over impossible odds. Its the humble beginnings, the acceptance of the journey even when you think about giving up, the willingness to face all the challenges despite being so afraid, and the sure, relentless forward progress that makes superheroes. And you are a superhero now.
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Our superhero stories are private journeys of courage and determination. Some know our stories; most never will. Heroes often work in anonymity.
The story we live in is an epic, and we and our children are the superheroes. And superheroes find a way to triumph.
It's unlikely anyone will hand us capes or merit badges, but acclaim isn't remotely why we do this. We only have to be a hero to our kids, to make a lasting dierence in their lives, and this we already do. We are not obligated to impress anyone else in this world. While we are never truly alone in the company of all the autism parents in the world, we must travel so much of this path on our own. We drag our hopes and fears along with us. What makes you a hero is that you will choose to go anyway. Heroism is often simply doing what is hard. Heroes are people who are afraid and overwhelmed yet keep going forward because they know something is more important than the fear. In the months and years following an autism diagnosis, we do begin to discover that much of what we feared doesnt come to pass, and so much joy we never dreamed of does instead. Yes, the path is hard. Nothing worth doing in life isnt. But you are strong enough. The story we live in is an epic, and we and our children are the superheroes. And superheroes nd a way to triumph.
I am a supe rhe ro
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I am an autism parent
Remember
Get up. If youre sitting or lying down, get up. Right now. Stand straight and proud. Remember how you felt the day your child was diagnosed. Remember how you feel right now. Remember every feeling in between.
Im not telling you it's going to be easy; I'm telling you it's going to be worth it. - Art Williams
There are no right or wrong answers to how you feel. Just remember. Sear it into your memory with branding re. Remember, so someday you can look back and see just how far you have come. Remember, so you will understand how strong you are and how strong you will become. Remember, so you will see how much you once feared did not come to pass and how much wonder and beauty rose up in its place. Remember so you can see all the challenges your child has overcome and how much courage and perseverance it took to get them there.
I am an auti sm p are nt
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Who I have become

Almost until the day Jonas was ocially diagnosed, I always thought our time on this road would be temporary. Even though we were going to as many as ve therapy appointments a week and having evaluations almost every other month, I could at least envision a time when we would be 'done'.
The moment you realize all of your assumptions are falling apart is absolutely terrifying.
I thought he would go to school with his peers, I might return to work or go full-time with my business, and life would go back to whatever was 'normal'. Wed just get back on the highway with everyone else, and that would be that. In the early days, its almost impossible to have any frame of reference as to whats happening to you, your child, and your family. Jonas was our rst child. We had no idea about parenting and child development in general. We didnt know anything. We just lived o assumptions, fear, and a sense that surely this would all end at some point if we just did the right things. The moment you realize all of your assumptions are falling apart is absolutely terrifying. I see my memories of leaving the psychologists oce after Jonass diagnosis through this gauzy haze, like it happened to someone else. All I remember clearly was feeling angry and hopelessly, utterly lost, followed quickly by the sudden clarity that we werent getting o this road any time soon, if ever. In the rst days and weeks, I was lled with a numb resignation, just getting through the day like an automaton doing what I was already scheduled to do. This was grief, pure and simple. Over a period of weeks and months, that grief spun me through cycles of terror, numbness, and determination. If you allow yourself to go through it, this roller coaster of emotions will ease. You will feel more at home in your new identity. You will see what needs to be done, and you will begin to do it.
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It may take you a while to be ready to say it out loud. For us there was some relief in the long litany of Jonass challenges all condensing under the heading of autism. It nally gave us a concise name to call everything wed been working on for over two years. However, that litany of challenges felt like a to-do list, a set of tasks to complete that in time we could start checking the boxes next to. Replacing all of that with autism is a turning point for all of us, one few of us are remotely ready for. I know I wasnt. This is the best advice I have about this. Say it out loud, even if you only do it in private at rst. Since our earliest ancestors gained speech, naming things has given us some measure of control over them. If we can name it, it is no longer unknown to us, and we are often less afraid of it. At rst, I hesitantly said He has autism or He is autistic. It felt almost alien to say it. In time I realized that hesitancy was about my own issues. I was still carrying around all this fear and self-loathing from all those years of feeling dierent and outcast. I didnt want him to go through that, too. I wanted to protect him. Then I nally got it that the point isnt to shield him but to embrace him and who he is, to embrace myself and who I have become. Our two sons are very dierent from each other. They are unique expressions of limitless possibility. They are fearfully and wonderfully made. I am proud beyond words of both of them. I am learning to be proud of who I have become. I am an autism parent.
Then I finally got it that the point isnt to shield him but to embrace him and who he is, to embrace myself and who I have become.
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e Autism Parents Vow

I started to make a vow on our Diagnosis Day.
Over time I crafted this vow and poured my fear, hope, wisdom, dreams, terror, and everything into it.
I thought about the wedding vows Mary and I wrote for each other, and from those vows I created new ones to Jonas. It took me a long time to put the exact words to what I wordlessly felt within me that day. Over time I crafted this vow and poured my fear, hope, wisdom, dreams, terror, and everything into it. As part of accepting your identity as an autism parent, I encourage you to write your own vow to your child. Read mine, then begin on yours. Take your time, and keep writing until it feels right. Then read it, and swear to it.
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I pledge to love you and be right there with you every step of our way together. No matter what comes, no matter what challenges we face, no matter how frustrated you get or how afraid or overwhelmed you become or how much or how little you say now or ever, I'll do everything I can to see you through. And together we will discover what you love most and what you most love to do, and we will help you share every gift you have with the world. I chose you. I chose you the day Mama and I formed you and forever before that. I chose to walk all of the days since I was born to nd the path to you, to nd you right where I'd hoped you would be. I chose you the day you were born. I've chosen you every day since. And I will choose you every day for the rest of my life. You are our gift. You are the world's gift. And there is not anything that could ever change that. I am so happy that you are you.
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It is time
When are you ready to be an autism parent? When you say you are. When you decide. When you make your vow. Its time. You are an autism parent now. Go to a mirror, and say it out loud. I am an autism parent. Say it to yourself. Say it to a friend. Say it to your child. Stand tall. Be proud of your child. Be proud of who you are. Claim it. Youre ready.
All glory comes from daring to begin. Eugene F. Ware
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Your Big Game Speech
Your child got an autism diagnosis. You think you cant do this. And you are wrong. You can feel the tsunami coming.
Yesterday is gone. Tomorrow has not yet come. We only have today. Let us begin. - Mother Teresa
Stand. Your. Ground. This is already hard, and it will get harder. But anything worth doing is hard. And when something is this hard, there will be times when you think you cannot possibly make it. But you are strong. When people or faceless institutions kick you down, decide right now that you are going to get up every time every, single, damn time no matter how much it hurts, no matter how much your body and your will refuse to cooperate. Decide now that you will not quit, no matter what it takes. Promise this. To yourself. To your child. Swear it to all you are and upon every ber of your being and every last thing you hold dear in this world. Swear that you will give everything you have to this mission that is now your lifes work. I know you are terried. Youre likely more afraid than you've been in your whole life. I hate to break this to you, but it will get worse. You will swing between every extreme emotion like a pendulum on amphetamines. The lows are awful. The highs are transcendent beyond words. This is your life now.
Your big game sp eech
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You are going to make it. I promise. You will reach the point where you feel broken and undone. You will crash over and over again. It may happen every damn day. You will want to quit, and because of that you will feel sure you're a failure. You only want the best for your child, but the challenges to get there are beyond comprehension. You will not know what to do, where to turn, or how to even begin. If I'm scaring you right now, I'm sorry. I really am. You need to know what youre up against. We've all been through this again and again, and so will you. But I'm not saying all this to discourage you. Its just the opposite. Im saying these things so youll understand something absolutely fundamental. Every autism parent has been through this. But look around you. Look at us, all of us. What do you see? We. Are. Still. Here. And you bet your ass we will not quit. We may get so tired we cant stand, but we are still beating down every wall, taking on every challenge, and tearing apart every obstacle because we believe. We believe in our children. Somehow, some way, every time we end up in our personal valley of shadow, we believe we will keep nding our way to the promise at the other side because that is
Decide now that you will not quit, no matter what it takes. Promise this.
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who we are. When it comes to our children, we will ght to whatever end. And somehow, some way, we prove our beliefs true time and time again.
When you find yourself at the bottom of your valley, face down in the dirt, with the weight of everything bearing down on you, remember. Remember the promise you made this day.
The barriers the world puts in front of us may seem immovable. When it feels like youre yelling at an unbreakable wall, keep going. No battle we ght is in vain. Even if all you do is knock a little dust o that wall, there will be less wall than was there before. It does matter. It all matters. Push a stone an inch or throw it through a window. It all makes a dierence. When you nd yourself at the bottom of your valley, face down in the dirt, with the weight of everything bearing down on you, remember. Remember the promise you made this day. And remember that we are still here. And we will face each and every challenge together. Now, go. Shake the earth so that no one will ever forget everything our children are and can be. Shake the foundations of anyone and anything that stands in their way. A new era is dawning in our lives. Go outside and announce it to the world. Call out to the world that we are here and our children are amazing. Shout that we are coming to change the world, and together we are unstoppable. Our children look to us to make their world a place where their light can shine. Lets go make it happen.
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e Stu at the End
Now what?
Thank you for reading I Am An Autism Parent! If Ive done my work well, hopefully your question at this point is, Now what do I do? Here are my suggestions: Send me your feedback. I would be grateful if you took a couple of minutes and sent me an email with your feedback about I Am An Autism Parent. Depending on what is going on at our house, I may not be able to respond, but I will read every message I receive. Just drop me a note at tim@iamanautismparent.com. Share this book. If I Am An Autism Parent has helped you or you believe it would help another parent, Id be honored if you shared it with them. The simplest way is just to send them to http:// www.iamanautismparent.com, but feel free to e-mail it, too. (See the Version and Copyright section near the end of this book for some additional information.) Sign up for more from I Am An Autism Parent. If this book was meaningful to you, Ill be releasing additional books, newsletters, and resources in the future. There are also great plans in the works among several of us autism parent bloggers to create some quality resources specically for parents whose children just received an autism diagnosis. Please visit my web site at http://www.iamanautismparent.com, and sign up if you havent already to get updates on all these exciting projects.
T he Stuff at the End
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Visit our blog at Both Hands and a Flashlight. For almost ve years now, weve chronicled our lives as autism parents at http://www.bothhandsandaashlight.com. Come visit us, read more about our day-to-day experiences, and check out our growing collection of resources. Visit us on Facebook. Both I Am An Autism Parent and Both Hands and a Flashlight have Facebook pages, so like us and say hello! I post a lot of great stu there that doesnt appear on our sites. Youll run into other autism parents there, too. Im also on Twitter as @autismparents. Write your own vows. If you havent already, write your own vow to your child. You can follow the pattern in The Autism Parents Vow in this book, or use any form thats right for you and your child. Also, write a vow to yourself. This is a challenging journey, so make sure you care for and about yourself. Most importantly, put everything else aside and delight in being the parent of your awesome child. They are wonderful and perfect as they are. Dont think about therapy, paperwork, or anything else right now. Walk away from this book, and go sit with them. Take a deep breath, and see what a treasure your child is. Repeat as often as you want. Thank you again for reading. Our best wishes to you and your family.
Tim Tucker
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A note about language

There is some debate about using the term autistic child vs. child with autism, the latter being an example of what is typically referred to as person-rst language. As you may have noticed, I typically use autistic. There are plenty of strong opinions about either form, not surprisingly. I have been asked many times about this, and its a fair question. Person-rst language means that you refer to the person rst and then their condition such as child with autism or person with heart disease rather than using their condition as an adjective like brain-injured man or breast cancer patient. In many medical, social services, and educational contexts this is established as an institutional policy. In a number of those settings, it's considered a grievous oense to not use it in every instance, without exception. However, I come at this from a dierent direction. Primarily, I use 'autistic' because it is usually the preference of those bloggers who are autistic. Many of them use the terms 'autistic' or 'autistics' as nouns, too. This to me in itself is enough reason to use the term in this way. In the case of 'autistic', it is primarily used as an adjective. We use adjectives to describe each other all the time in our society, and most of the time there's no assumption that a particular adjective completely denes someone. Just because I'm a white person or a male person doesn't mean that's all I am. Sure those are fundamental to who I am, and there are a variety of things that are very likely true about me as a result (e.g., society is sadly still very tilted in favor of both whiteness and maleness). So those dene something essential about me, but I am more than those words.
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The reality is that autism does dene something essential about who our Jonas is and who we are as a family. It is the fundamental lens through which he takes in the world and processes everything. And there is absolutely nothing wrong with this. I think to relegate autism simply to the level of a condition is to not fully appreciate autisms place in the diversity of what it means to be human. But perhaps that is a reection for another day. Both 'autistic' and 'has autism' may arise from a dierent set of perspectives, but I think most everyone means well regardless of which they use. The expressed preference of autistic persons I have met in person or online has been the primary reason I use autistic as I do. In cases where you can ask someone what they prefer, their preference trumps any other rule in my opinion. My perspective is merely one among a diversity of opinions, but given its importance, I wanted to give an account of why I made the choice of words I did.
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Credits
I have so many people to thank that I couldnt even begin to mention them all here. So many good souls have come and gone in our lives over the past seven years. Know we love you more than any words could describe. There are several people I must thank specically. So many autism parents encouraged me to write this, and many of them read rough drafts and provided invaluable insights. Most of all, you inspired me to see this through, and the wisdom you have taught me over the years lls this book. So much of what is good about this book can be traced to you, and any of its shortcomings are solely my own. To The Club That Cannot Be Named, you know who you are. Thanks for being my Autism Underground. And bacon. In particular, my dear autism mom friends Debby Torres (who did a boatload of work helping me edit this) and Jen Walsh have become almost adopted sisters to me. Thank you for everything. Your encouragement brought me to the nish line. To Jonass teachers Jennifer, Heidi, Monika, Becky, Tosha, and Nina and his therapists Jamie and Jennifer you are without equals. Your names will always be spoken with honor in our family and in all the families whose lives you have touched. When I feared I would never nish a book of any length no matter how desperately I wanted to, I called Kelly Kingman to give me some sanity. Her wisdom, guidance, and ability to talk me o the literary ledge became my salvation. If you need a writing coach, run, dont walk, to her at http:// www.kellykingmanmedia.com. Also, many thanks to Barbara Staord for your thoughtful feedback on numerous drafts and for some great ideas on how to present this to the world. You two helped
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me take the raw product of my writing and turn it into something Im proud to send out into the world. To A.K.H. and The Group, even though a decade has gone by now, so much of the wisdom you passed on to me lives within these pages. I am still learning from you, and I know I always will. I thought of you all often while writing this book. It was my honor to journey with you during that season of my life. The photo of Jonas in The Autism Parents Vow and our family portrait at the end of this book were taken by Sue Baker at Sue Baker Photography. They are used here by permission. Thanks, Sue! To Mamaw, I miss you every single day. You raised me to be a good man and father, and I have tried to follow your wisdom and your example. So much of what I know about love, acceptance, perseverance, faithfulness, determination, and kindness, I learned from you. To my two perfect sons, Jonas and Eli, you have helped me become a far better father and person than I could have ever imagined being, though I know I have so far yet to go. You have taught me to experience life in every possible way, to be thankful for every gift, and to rejoice for every good thing no matter how big or small. I am so incredibly proud of you. And to my wife, partner, and editor Mary, we have overcome many challenges together. Because of that, I know we are unstoppable. No matter what our futures hold, knowing I get to journey there with you makes all the dierence. You are the greatest Mommy everywhere! (Inside joke.)
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Version and Copyright

The beauty of e-books is that you can go back and update them if you want. If you want to see if a new version of this book has been released, go to http://www.iamanautismparent.com/books and compare the date below with the one on the site. You can also subscribe to the I Am An Autism Parent newsletter on our site to be notied about this and any other resources as they become available. The copyright in this work belongs to the author, who is solely responsible for the content. Please direct permissions questions to the author at info@iamanautismparent.com. The cover photo is Pavel Losevsky - Fotolia.com. This PDF version of I Am An Autism Parent is licensed under a Creative Commons AttributionNonCommercial-NoDerivs 3.0 Unported (CC BY-NC-ND 3.0) license, which in English essentially means you can share it with anyone you want as long as you dont alter it in any way, you dont claim its yours (duh), and you dont use it for commercial purposes. In other words, share it freely and be cool about it. This edition of I Am An Autism Parent was last revised on October 31, 2012.
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About the Author

Tim Tucker writes and manages Both Hands and a Flashlight, his familys online chronicles of parenting, autism, and the pursuit of being awesome, and has been blogging on autism since his son, Jonas, was diagnosed in 2008. The I Am An Autism Parent project is his next major endeavor. The mission of I Am An Autism Parent is both to help parents receiving an autism diagnosis for their child adjust to the challenges of autism parenting and to inspire all autism parents to embrace their own strength, skills, and identity. Tim lives in Raleigh, North Carolina with his lovely and winsome wife, Mary, and their two amazing children, Jonas and Eli. He is an avid runner who has completed two marathons, both in Jonass honor on the anniversary of his Diagnosis Day. You can nd him on Facebook on both the I Am An Autism Parent and Both Hands and a Flashlight pages as well as on Twitter as @autismparents.
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I Am An Autism Parent

and In memory of Mamaw You taught me everything I need to be an autism parent.

I dont think I can do this

I will be open to this journey

The journey of discovery

I am now part of a community

I accept my child as they are

I choose love over fear

105 106 109 110 111

Your Big Game Speech The Stu at the End

135 137 139 140

Our diagnosis story

I have a diag nosi s

I have a diag nosi s

I have a diag nosi s

A new journey begins

I have a diag nosi s

I dont think I can do this

Youre not ready, and neither is anyone else

I dont think I can do thi s

Remember that out here, we are never truly alone.

I dont think I can do thi s

I dont think I can do thi s

I dont think I can do thi s

All you have to do right now is breathe

I dont think I can do thi s

We are terried of what we dont understand

I dont think I can do thi s

I dont think I can do thi s

I dont think I can do thi s

I dont think I can do thi s

You are going to be OK

Let the baggage go

You need to shed as much of that old burden as you can.

You dont need to be perfect or even know what youre doing

You have my permission

You have my permission to not be perfect.

I am terrified Ill be unable to handle the challenges in the future.

Welcome to your epic

I am g oing on an adve nture

Believe that we can be heroes

I am g oing on an adve nture

You will be forever changed

I am g oing on an adve nture

Your roller coaster of emotions

I am g oing on an adve nture

Go where the road takes you

I am g oing on an adve nture

I am g oing on an adve nture

Climb the mountain

Everything in your life has led you here

ese too shall pass

How long can you carry your child?

You are enough

I will be open to this journey

I w ill b e ope n to thi s jour ne y

e journey of acceptance and love

I w ill b e ope n to thi s jour ne y

I w ill b e ope n to thi s jour ne y

I w ill b e ope n to thi s jour ne y

There will be days when dreams become real.

I w ill b e ope n to thi s jour ne y

I w ill b e ope n to thi s jour ne y