I Am an Autism Parent

7/28/2019 I Am an Autism Parent

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I Am An Autism ParentT i m T u c k e r


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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.

I A M A N A U T I S M P A R E N T


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Table of Contents

I have a diagnosis 1

Our diagnosis story 2

A new journey begins 5

I dont think I can do this 6

Youre not ready, and neither is anyone else 7

A space to grieve 9

All you have to do right now is breathe 11

We are terri ed of what we dont understand 12

A journey of revelation 15

I am going to be OK 16

You are going to be OK 17

Let the baggage go 18

You dont need to be perfect or even know what youre doing 20

The 1% Rule 22

You have my permission 24

Amazing Grace 26



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I am going on an adventure 28

Welcome to your epic 29

Believe that we can be heroes 30You will be forever changed 31

Your roller coaster of emotions 32

Go where the road takes you 33

I am strong enough 35

Climb the mountain 36

Everything in your life has led you here 37

These too shall pass 38

How long can you carry your child? 39

You are enough 42

I will be open to this journey 43

The journey of possibility 44The journey of acceptance and love 45

The journey of opportunity 47

The journey of grace 48

The journey of wonder 52



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The journey of discovery 54

I am now part of a community 55

You wont have to do this alone 56The Autism Underground 57

The Autism Family 59

We are surrounded by heroes 60

The miracle of eating 61

Build your village 63

Believe in people 64

I accept my child as they are 66

Liberated from normal 67

Making the right decisions for your child 68

See the possibility 70

Acceptance and hope 71

The same today as yesterday 72

Prepare a way for them 73

My moment of revelation 74

Celebrate each wonder and victory 75



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I accept myself as I am 76

Be honest with yourself 77

Its not your fault 78Its OK to make lots of mistakes 80

The new abnormal 81

Made whole 83

See your life as it is and accept it 85

I choose love over fear 87

We are all afraid 88

Dont choose out of fear 90

Name your fears 91

Your life is uniquely yours now 93

Tell a new story 94

A brave new hope 95

The moment I nally believed 98

I am as ready as I need to be 101

We learn as we go 102

Your best will be enough 104



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Always be open to beauty and hope 105

What my hero taught me about being an autism parent 106

No matter how hard, you will nd a way 109

Let go of needing to measure up 110

Your child will be your greatest teacher 111

I am a superhero 112

The source of our superpowers 113

Why you are a superhero now 115

How heroes are made 116

The path of the superhero 119

I am an autism parent 121

Remember 122

Who I have become 123

The Autism Parents Vow 125

It is time 127

Your Big Game Speech 128

The Stu ff at the End 132

Now what? 133



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A note about language 135

Credits 137

Version and Copyright 139

About the Author 140



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I have a diagnosis


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I have a d iagnosis

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 o ffi ce couch next to Mary, her right hand in my left and Jonas on her knee

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 rememberthe 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.

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I wrote downeverything he said as if my pen could save us from thechaos, as if maybe I could draw someroad to a future wecould no longer see.


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I have a d iagnosis

I barely remember saying goodbye to the doctor and leaving his o ffi ce. 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

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 over owed 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.

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He's the sametoday as he was yesterday... He isour beloved son,and we will do

what it takes.


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I have a d iagnosis

On Diagnosis Day, that was enough for me. I went and held him, rocked him, and kept saying over

and over again, Everything is going to be OK . It was a mantra at least as much for my bene t 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.

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The morning after the diagnosis, thesun still came upand a new day began, as it hasevery day since.


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I have a d iagnosis

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

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 o ff er 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.

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Your child haswonders to reveal to

you, wonders younever dreamed possib le.


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I dont think I can do this


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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 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 th ink I can do th is 7


You will never beready for what will happen. Being ready is impossible.

Thankfully thatsnot the point at all.


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A space to grieve

We have in our minds, from the moment our children are born, ideas and images of how their lives

will unfold. Sitting in a chair and hearing 'autism' spoken about our child wasnt part of that. This iswhere 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.



We must let go of the life we have planned, so as toaccept the one that is waiting for us.

Joseph Campbell


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Notice that this is completely about us as parents. Our children are wonderful and perfect as they

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.



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.


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All you have to do right now is breathe

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.



Al l you need in thismoment is to practice accepting who you are and your life as it isright now. Thats it.


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We are terri ed 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 testresults 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 signi cant 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 terri ed 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 atthis. 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 terri ed 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 afeeding specialist.

The feeding therapists o ffi ce waiting room was really our rst introduction to children with

signi cant 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, weregularly 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 di ff erent

offi ce. 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 af raid of that which we dont understand, but the

way through the fear has nothing todo with actually understanding.


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Still I thought our time on this road would end at some point. I believed that if we did enough

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 terri ed 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 o ffi ce. When we walked into the therapy o ffi ce the next day for Jonass

regular appointment, a sort of hush came over the sta ff . 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.



The enormity of autism parenting isimpossible tocomprehend. Almost none of us beginwith even theslightest training or knowledge about how to do this.


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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,

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.



It's like driving acar at nig ht. Younever see further than your headlights,but you can make

the whole trip that way. E. L. Doctorow


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I am going to be OK


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You are going to be OK

Youre in a raw place at the beginning. You need time to regroup. As when anything life-altering

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 di ff erent 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 di ff erent 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.



When it is darkenough, you can seethe s tars. RalphWaldo Emerson


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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

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 di ff erent.

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.



You will grow into your ro le. And if you do the work of caring for yourself, you will make it.


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

This baggage is so integral to who we have become, however, that laying it down can feel like

chopping o ff 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.



But being an autism

parent is always a great unknown. Thequest is to becomemore and more OK with the unknowing and the unknowable.


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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 eff

ort that we will overcome all of our challenges andour children will thrive.

Not to diminish anyones perspectives on this as weve all felt this way, but heres the reality about

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.



So you feel like youdont know what youre doing? How

could you possibly know right now?


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Thats the secret. Really. You will learn quickly because you have to, because your entire life is on the

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 con

dence.

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.



No one is ever amaster. No matter how with it anyoneappears to be, theyrenot. We never master this material. We arealways learners. Wewill forever be pilgrims seeking wisdom.


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e 1% Rule

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% moreknowledgeable 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.)



Most people only s e e m to know morethan you about various important things in life. They often dont.


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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

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 co ff ee, stare

at your belly button or the wall, or do nothing whatsoever.



You have my permi ssion to not be perfect.


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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 o ff ered 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 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.



You have my permission to not worry about the future right now.


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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

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 di ff erently? 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 strobe-

lighted 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 neverfelt good enough. I remember all the times Ive felt burned out, exhausted, and teetering on the

verge of a nervous breakdown, and I am terri ed 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.



I am terrified Ill beunable to handlethe challenges in the

future.


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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

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 in ections 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 unde nable, in nite, amazing grace. Because of this, we will be OK.



In moments likethat, I realize hesright. We really are going to be OK. I

dont have to knowhow.


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I am going on an adventure


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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 di ff erent needs and responsibilities scream for our attention every moment.

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.



For the most part,

those explorers chosetheir adventures.Ours chose us.


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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

nightmares. Adventures dance on the knife edge of joy and wonder, fear and disaster. One minuteyoure 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 arisefrom 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.



We begin to imaginethat maybe, just maybe, we could beheroes too. Now you ll have that

chance.


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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

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 di ff erent 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

off 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.



We are inspired day after day by our courageous littleheroes who

persevere despite great odds.


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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. Theood 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.



Al l you have to dois look at your wonderful child toremember and

renew your courageto keep going.


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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.



That moment of beauty was reserved

for us, the twowilling to brave it and discover something wonderful together.


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I am strong enough


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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 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 toobig 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 s trong enough 36


You will, oftenblindly, stretch thelimits of your reachand find that down

in the hidden placeswithin you aresprings of couragerising toward thesurface.


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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, in atable, bouncy houses. On top of all the guilt I

felt about that, there was the more important crisis of how to help a terri ed child with a severely

broken forearm get through both urgent care and the emergency room without damaging his arm

more.

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 ff 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.



The terror wasstronger than the

physical pain . I had previously only seenvisions like this inmy nightmares.


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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.

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 ff 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 ff him and the

table. I felt like part of my soul had stuck to the vinyl covering of the table and ripped away.



He kept looking mein the eye begging me outside of wordsto make it all stop. I could feel myself

dying inside. I kept singing.


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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 ff .

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 dowhat you have to for as long as youhave to, because youare strong enough todo it.


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I will be open to this journey


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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.

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 wil l be open to th is journey 44


But what isunknown is full of what is possible.This is a journey of possib ility. This is your journey now.

I


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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

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 di fficult, 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 ful llment through

all the changes of our lives. I will stand beside you in joy or in sorrow, in ease and in con ict,

putting the commitment we make today above any obstacle that we may face.

This is my solemn vow.



I will stand beside you in joy or insorrow, in ease and in conflict, putting the commitment wemake today aboveany obstacle that wemay face. This is my 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 di ff erence 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?



You have theawesome opportunity to make all thedifference in theworld to this child, your child.



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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

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.



There will be dayswhen dreamsbecome real.



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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

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 myMommy!" 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?



"I want Mama." Let that sink in amoment. To hear that after so many year s was pure , soul- filling grace.


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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-unful lled 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.



It was enough light for me to see all the

perfection and beauty of thismoment, thiswonderful and real moment that could

now take the placeof my once-unfulfilled dream.



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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

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 o ff ers 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 di ff erence? 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 de nite

red ag.


But know this.There are noshortcuts. There isno quick and easy path. There is noone plan to fit every child. There is nodo this and it works.



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Ive learned that the true miracles in this journey do not come from anything you can spend money

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.


But every wonder isa million times

more vivid becauseit has been hard... I wouldn't trade my life for anyone's. I want to discover

what happens next.I want to keepliving 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 di ff erence. 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 changewhen you begin tosee this not as anobligation but as anopportunity for meaning, a chanceto make anincredible difference.


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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 o ff er 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 gocrazy. 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 moreimportantly, wedont have to.



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e Autism Underground

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 themall over the place. I never noticed how many blue Honda Civics there are in the world until we looked

into buying one.


Its probably not a

club you ever imagined being a part of. However, it is made up of someof the most kind

and wonderful people I have ever known.


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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 ma a in our relentlessness. We have a

long, long memory when someone harms one of our own.

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.


Autism parent s are

a family. Like many fami lies, we takecare of each other.


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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 speci c brand and kind.) To drink, he would only have lightly-sweetened,

deca ff einated 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 di ff erent 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 washard to appreciatethe progress, albeit glacial, that wemade together.



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We not only agreed to follow a speci c, 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

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 di ffi cult 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.


Professionals havecome and gone fromour little village,but they eachcontributed something that brought us to thismoment of puremagic.



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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, enrollingyour 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 o ffi ce 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.


Dont be afraid toreach out.Remember, youcant do this alone,and the good newsis still that youdont have to.



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Believe in people

Its easy to fall into the belief that the world is cruel. There is so much hurt and su ff ering. 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 bedisappointed. 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


I do believe theworld is fundamentally good enough. When I have sought a good soul to help, I havealways found them.



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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

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 con rm 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, accepting people, 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.


The people whohave come into our lives over these past

few years haverenewed my hope inhumankind, and they continue torenew it every day.


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I accept my child as they are



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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 terri ed about an autism diagnosis is fear of the unknown

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 classi ed or graded. Even the autism

spectrum itself cannot easily be de ned.

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

diff erences, everything is bland and meaningless.

You are now liberated from this normal, and this is a wonderful thing.

I accept my chi ld as they are67

Forget normal.Normal is boring.You are nowliberated from this

normal, and this isa wonderful thing.


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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.

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.

I accept my chi ld as they are 69

Your child isawesome and wonderful. Dont let anyone say

otherwise. Ever.


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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 youcarry 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 ff because you

know what is required. Acceptance means embracing the future by investing yourself fully in the

now.

Acceptance is hope.

I accept my chi ld as they are 71

Acceptance is not the opposite of hope. Acceptance ishope.



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e same today as yesterday

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

Documents

I Am an Autism Parent