Category Archives: Letters

Letter to My Autistic Child

“This is what we know, when you tell us of your fondest hopes and dreams for us:  that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”

-Jim Sinclair “Don’t Mourn for Us”

Dear Callum,

I found this quote recently.  And it has haunted me for weeks.  Every time I look at you and think of the future, it echoes.  I don’t know what to think, and I don’t know how to feel.

Because in this man’s voice, I see you in twenty years.  And I would never want you to think this true of me.

When I found out that you were going to be a boy, I was afraid.  Not because I don’t love little boys.  I was afraid for what was an irrational reason.  I feared autism and, though it certainly happens to little girls as well, your chances of being affected by it are much higher if you are a boy.  I remember telling a friend that I could handle just about anything, but I didn’t think I could handle autism.  How ironic is that?

No, I don’t think God gave you autism to teach me any lessons.  My God doesn’t play games like that.  But I do think I knew something.  I must have somehow sensed you were coming and feared not being the right mother for you.  I now know that is ridiculous.  There is only one person in the whole world who could love you as much as I do.  Me.  You’re mine, and I couldn’t be any more proud of you.  Really.

So what exactly, you may ask, was I afraid of?

Well it certainly wasn’t not loving you.  Oh, how I love you.  And not in that “because of the challenge of raising a child like you I have grown so much as a person” kind of way.  (I don’t know why someone would feel that way.  Maybe their kids aren’t as cool as you.)  I wouldn’t trade you because you are the only you in the whole world and I could not imagine having any other boy.  There is no sweeter smile on this planet.  You are incomparably cute.  Your giggles, hugs, and kisses have no equal.  Everyone who meets you raves about what a sweet little boy you are.  Your soul is just magnetic like that.  Everybody who meets you loves you.  It doesn’t happen every day, but there are just some souls in the world like that.  You’re one of them.  And it makes me so very proud.

But, oh baby, how I do fear for you.  And it’s because I want so many things for you.  Yes, I know they may not be the things you want.  I know they may not be things you are wired to do.  But I want them for you all the same.

Some parents are guilty for wanting their children to fulfill their own dreams.  It is the classic battle between parents and their children.  The things parents want for their children vs. the things their children want for themselves.  The thing is, I’m not looking for you to fulfill my dreams.  I don’t believe that children are blank slates.  I think you come screaming into the world exactly the people you are, and that it is our job to help you be the happiest you you can be.  I just want you to have all of life’s options available to you.

I’ve traveled to foreign countries and met fascinating people.  I want you to be free to do the same.  I have studied and chosen a rewarding career.  I want you to have that same choice.  I have fallen in love.  I want you to have the interpersonal skills to find someone to share your life with as well. And, if it would make you happy, I would love for you to experience the same joy having your own child that you and your sister have given me.  I want you to be able to make friends.  I have been blessed by wonderful friends who are even closer than some family.  I want you to be able to read.  Reading open doors to new worlds and connects our minds to great minds of the past.  I want you to be self-sufficient.  I don’t want you to be dependent on anyone else’s possibly bad decisions on your behalf.  I don’t need you to be captain of the football team.  I won’t be proud of you for joining a fraternity or dating the prom queen.  As long as you are happy, you are free to choose any career from fixing cars to studying bee habitats.  Whatever floats your boat.  All I want out of life for you is for you to be content and have the ability to direct your own life.

But then I hear the echo of this quote and I become afraid all over again.  I don’t ever want you to feel that, because I want these things for you, that somehow I want a different son.  I love you just the way you are.   Yet, I am not going to lie and say that I won’t be sad if you can’t have these things.  Autism, in its severest forms, can be a thief.  And I don’t want anyone stealing from you and your potential for happiness.

You are like a traveler who inhabits worlds in two dimensions.  This world and the world of autism.  Some autistic people will never leave that other world.  They will not be able to travel freely between both places.  They don’t speak the same language we do.  And all we get are occasional glimpses through windows by which to get to know one another.

I know that other world is part of you.  And I accept that I will have to share you.  We’ll have to learn together how to find the right balance.  But know this.  I intend to do battle with that world.  Because though I plan to share you, I refuse to grant primary custody.  And it’s not because I find you less worthy living over there.  It’s simply because I want you here.  Pure, selfish – yet unconditional- love.  Mamas can be funny like that.  I know I may not win.  But the losing won’t be for lack of trying.  And, should that happen, I’ll keep fighting for access to come and visit you there.

I don’t ever want you to think that I am fighting you.  I will always want you to be you.   Autism is a part of you.  And, because I love you – all of you – I wouldn’t dream of trying to cut you in half.  But it isn’t all there is to you, baby.  The other part of you would have been you even without it.  That’s the part of you that needs to have free access to this world – to love, to friendship, to self-esteem, confidence, and self-actualization.  All I want is for you to be able to navigate both of our worlds.  I will fight for that –and for you.

But I am and will be proud of you for who you are.  Right now.

And on the day that you will one day read this.

Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store

Dear Shopper,

Yes, I know.  I’m well aware that my child is screaming.  Not just a regular scream, but an ear-piercing, sanity-shattering screech.  Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.

That is what you were wanting to say, right?   There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion  or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children.  Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children.  Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.

And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives.  You are, in all probability, a good person.  You probably don’t mean any harm.

This is what complicates what I want to say to you.  Because, despite my anger towards you, I happen to have been raised well too.  I don’t want to be ugly, even though right now I feel like it.

Because I know some of that anger is misdirected.  It is misdirected because I, too, have stood in judgment of someone like me.  I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children.  When I have children, mine will never behave like that.”   I, like most people, wasn’t quite as obvious about it as you.  I didn’t stare or make comments that could be heard.  But I was every bit as decided.   So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.

The nice thing about human nature, however, is that it can be overridden.  And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions.  Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child.  Like you, I marveled at the miracle of life upon becoming his mother.  Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him.   Like you, I had certain dreams for my child.  There your path and my path diverged somewhat.

My precious child is autistic.  Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter.  The truth about autism is that it encompasses a wide spectrum of abilities.  And, like you and me, every autistic child who has it is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system.  Most of us have ours in good working order.  But some people with autism have what I like to call a hair-trigger alarm system.  Theirs can go off with what seems to average folks like little to no provocation.  But there IS always provocation.  Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off.  And when it does, it can be loud.   Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them.  When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm.  It isn’t his fault.  And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated.  It hasn’t been so pleasant for me either.  Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do.  And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public.  I have to leave the house and so does my child.  Because I have to teach him about the world.  I have to let him practice controlling his alarm system.   So that he, too, can go out into the world successfully too.

With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children.  And for some of us, our dreams will have to change for our children.  We may need to re-define happiness and success.  For life is like that.  We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person.  For, with 1 in 59 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me.  All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm.  You could be the bright spot in our day.  And, then, if you want, you are welcome to ask all the questions you want.  Your curiosity doesn’t offend me in the least.  Most of us aren’t the least bit upset to talk about our kids – any more than you are.  If anything, it is an opportunity to educate and dispel myths.

And, maybe, just maybe, you will be standing there when the alarm gets turned off.  Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows?  Maybe I’ll get to see the one hidden behind yours.

If you liked this post, you might also enjoy:

“We Don’t Talk No Baby Talk Round Here!”

Reply to a Disgruntled Reader

Dear Friend Whom I Haven’t Seen Much of Lately

Letter to My NT (Neurotypical) Child

Or you might like “Excess Baggage” from Random Pearls of Wisdom.

Letter To My Neurotypical Child

Dear Bronwyn,

Last night, you went to your grandma’s house and helped your cousins put up her Christmas tree.  All of you are little right now.  You are 4.  Your brother Callum is almost 3.  Because you are so young, you have not yet noticed that he is different from other little boys.  You didn’t understand the significance when one cousin asked tonight, “But if Callum can’t talk, how can he ask Santa for what he wants for Christmas?”  Sweet child that you are, you have already decided to ask for him.

But, that innocent question got me to thinking.  It got me thinking about hard things and tests of character that you don’t yet know are coming.  Right now, you summarize everything your brother is not yet able to do with, “That’s because Callum is a baby.  He needs our help.”  Because you are so little, you have not yet noticed that Callum and your cousin are the same age – born just five weeks apart.  So, no, Callum is not quite a baby any longer.  It just seems that way now.

It won’t always seem that way.  As he gets older, people are beginning to notice the things that he is not yet able to do.  Your brother has a condition called autism spectrum disorder.  Lots of people have this.  And, like you, they are all different.  Some of them are so affected by it, that they have a hard time communicating, making friends, and taking care of themselves.  Some of them are quite smart and make amazing contributions to the world, but seem a bit odd.  Most fit somewhere in between, and we just have to learn about them the same way we do everyone else.

And, the thing is, despite having a lot of differences. we have a lot more in common.  For they are people just like you and me.  They have fears, curiosity, and interests.  They love, cry, and laugh.  They are sad when others are mean to them.  They want friends like everybody else. Autism spectrum disorder can rob those we love of the things they want and things we want for them.  While autism can be a fascinating thing, it can also be a sad one.

Unfortunately, there are people out there who feel so bad about themselves that they think the way to get attention is to be mean to people who can’t defend themselves.  Those people are called bullies.  As much as Mama and Daddy want to protect you from them, those bullies are one day going to say mean things about your brother and maybe even you.

Baby, here’s where things are going to get tough.  Because, despite how much you love your brother, you are still a perfectly normal little girl.  You will wish with all your heart for those bullies to leave you alone.  You will have moments when you wish he didn’t have autism.  You will be embarrassed when he says and does strange things.  You will hope your friends don’t see that, and you will be horrified the day they do.  He may ruin special things for you.  And, in your hardest and saddest moments, you may wish to not have a brother at all.  To make things even worse, you will then feel guilty for feeling that way.  It’s going to seem like you just can’t win.

So let me tell you something I want you to remember.  Baby girl, I have faith in you.  You may be wondering how, my having written this when you are only four years old, I can say that.  But a mama just knows.  You have been you since the day you were born.  So has your brother, for that matter.  Not only do I love you, I happen to like you.  For you are many things I am not.  You are fearless — not afraid to ask and say what you think.  You are a social butterfly — not afraid to talk to anybody.  You are always ready for fun — never shy to dance and sing in front of whomever.  And you are worlds smarter than I ever dreamed of being.

So, you’ve got a lot going for you in terms of tools to help you handle those bullies.  Because you are so fun and likeable, you will have no trouble finding the kind of friends who will care about you for you — and not try to make you feel bad for your brother being different.  Because you are brave, you will stand up to those teasing you and Callum.  Because you are smart, you will help teach Callum how to stand up for himself.  And, though I never want you to pick a fight – and do want you to learn how to turn the other cheek when called for – I promise I will never be angry at you for standing up for what is right.  It’s hard sometimes to define what is right.  You’ll know it when it happens.

Sometimes standing up for what is right comes with consequences. Sometimes it means losing the good opinion of people who aren’t worth yours.  And sometimes, which hurts most of all, it means losing people you thought were your friends.  Yet it also comes with good things.  You and all the people who matter will be proud of you — and you’ll be proud of yourself.  You will make new friends, those whom you value more than the ones you mourn.  You will learn how to appreciate all different kinds of people.  You will be far more mature than even many of the adults you know.  And you will have made the world just a slightly better place for Callum.  You will be his hero.  Not everyone has a chance to be somebody’s hero.  I have a feeling you will be an awesome one.

It won’t be the easiest thing to do.  Sometimes you may feel angry or unwilling.  Sometimes you might feel bad for yourself.  When those feelings happen, I want you to remember something else.  As much as I love your brother and am often caught up in his needs, you are also my child.  Your hopes, fears, and happiness are just as important to me.  When you get caught up in negative feelings, by all means come and tell me.  Talk to someone.  Allow yourself to be human, even if you then have to turn around and be someone’s superhero all over again.

And once you have let off a little steam and taken a deep breath, continue to be the person I have faith you can and will be.

You will make me proud.  You already do.

Dear Friend Whom I Haven’t Seen Much Of Lately

Dear Friend,

You have no doubt noticed that you haven’t seen much of me lately.  Maybe weeks, maybe months, maybe years.   I bump into you in the grocery store, and we always talk about getting together soon and about how ridiculously long it has been.  And it really has been too long.  I really have wanted to see you.  But I will admit that sometimes when you call, I don’t answer the phone.  Often it is because I can’t talk amidst a cacophony of banging, screeching, and crying.  Mostly it is because I have been standing there for some time trying to figure out just what it is that my child wants so badly, but doesn’t have the words to ask.  He’s upset, and there will be no conversation if I don’t figure it out.  I intend to call back, but because he has so much trouble going to sleep and staying asleep, I often just give up and hope for another opportunity.

But sometimes I don’t answer for no reason at all.  Yes, I swear I’m eating, brushing my teeth, and taking showers.  Don’t worry — I’m not that far gone.  I simply find it overwhelming at times to even think about making casual conversation.  There is so much to catch up on, and I don’t have the energy for that.  So, please believe me when I tell you —It’s me, not you.

But you probably already knew that.  I’ve heard the other end of the phone go quiet and then realize that I have been talking for a long time about my child.  It’s often the end of our time together when I realize that he has been the sole topic of conversation.  I don’t mean to do it.  I’m simply overwhelmed and leaning on you in the same way I used to about other sorts of things.  Except that worries about him are now a broken record in my mind.  I forget to ask you about your kitchen renovation, your vacation, what is going on with your sister-in-law, or your promotion.  And even when I do ask, I’m distracted and don’t seem to have the capacity for all the details.  I really do care about you and your life.  It is simply that there is only so much room in the active part of my mind, and right now it is taken up with him, his needs, and his myriad of  therapy sessions each week.

You are still the great, caring person you always were.  And I know that you mean well when you ask me to “bring the kids” to some get-together you are having.  I know that your feelings will get hurt when I inevitably decline.  But, you see, when everyone else is sitting back and laughing — watching their kids play in the pool — I am running around trying to make certain that my curious little tester of bouncing properties isn’t destroying your home.  You have a lot more knickknacks and breakables than me these days.  I’m trying to make certain that he is fed, because he won’t eat any of the child-friendly foods you so kindly have served.  And, because you don’t have a fence or child-proof lock on the exterior doors or safety gate on your stairs, I can’t spend any time with you while there anyway.  It becomes a stressful experience that I avoid like the plague.  And, even if I do get a sitter and come without the kids?  I spend my time feeling guilty about not bringing them.

So, that’s where I am right now.  And why I haven’t been calling.  I really would like to have lunch with you.  So, yes, please ask.  But I’ll need you to do me a favor.  Please give me several days’ notice.  Because I don’t want to bring the kids, and I need to make arrangements.  Please pick an affordable restaurant.  Because all these therapies, treatments, and special diets are costly.  Please let me go on a little while about my child.  Because it explains so much about the Me of Now.

And then be sure to sweetly say, “Now let’s talk about ME” and proceed to do so.  I can take it, really.  Sometimes, I just need to be reminded.  🙂

If you liked this post, you might also enjoy:

“Love Life, Be Brave.”

“Speak No Evil:  8 Things Family, Friends, and Complete Strangers Shouldn’t Say to Parents of Autistic Kids”.

Reply to a Disgruntled Reader: On Person-First Language and Autism

From a Reader:

 “Because you are a teacher, you should know that children are not autistic. Children HAVE autism. The behaviors are autistic. How would you refer to a child with cancer? Surely, not canceristic.”

Dear Reader,

I read your comment and set it aside.  I waited because there isn’t a correct way to respond to this.  I can’t win no matter what my response is.  Clearly, you are strongly of the opinion that people should place descriptions of children AFTER the noun “child”, presumably because you want to stress “child” rather than “autism”.  I realize that you do not want to see children defined by a condition.  I get that.  I do.  But I would be lying to you if I told you that I agree.

Just a few days ago, my friend Jenny, also an autism mom, made the comment that she wished people would stop using the term “children who have autism”.  She thought it sounded like some dread communicable disease.  You know, like “I have crabs” or something equally disconcerting.  At the time, I remember thinking how funny that was – precisely because I have heard impassioned arguments to the contrary!  I remember thinking that, no matter what one says these days, you offend somebody.  And, clearly, I have offended you.

Abraham Lincoln once made this dry criticism of a writer:  “He can compress the most words into the smallest ideas of any man I ever met.”  The English teacher in me loathes wordiness.  It obscures meaning, as one is too busy shoveling crap to get to the main idea.  I believe that political correctness has forced us all to spend a great deal of time adding more and more words into our sentences to describe… the obvious.   I don’t use vulgar slurs.  And I dislike hurtfulness in all its forms.  But I believe that we can rearrange the adjectives and nouns to our heart’s content – and not change a thing except to make it immensely difficult to get out a single sentence without pausing repeatedly to shift around all the words.

Our society is already quite comfortable referring to certain groups of people via description.  The deaf community.  Senior Citizens.  Diabetics.  Brunettes.  Gifted children. You don’t hear many screams of outrage demanding those persons be called “groups of people who are deaf”, “Americans of advanced age”, “people with insulin resistance”, “women with brown hair”, or “kids who are much smarter than their teachers”.  You simply don’t.  I can rearrange all of the words into new prepositional phrases and -you know what?  It won’t change a thing.  Even in the autism community, people with an Asperger’s diagnosis affectionately refer to each other and themselves as “Aspies”.  Search the internet, and you will find dozens of websites with funny t-shirts designed for autistics and aspies who want to proudly and amusingly claim their unique status.

For many months now, I have been likening observations of my son to having three sets of eyeglasses.  We analyze his behaviors in terms of him being two years old, being autistic, and also simply being Callum.  But the frustrating part is that I cannot classify any of his behaviors using just one pair of glasses.  For he is all of those things.  Remove one, and he ceases to be the little boy that I love.  He is an autistic two-year-old boy named Callum.  Converting the adjective into a prepositional phrase will not change anyone’s perception of him.  Nor do I believe the argument that it will change his perception of himself.

The thing is, I am certain that there will be folks who reply in to this, passionately disagreeing.  There will also be people replying in, passionately agreeing.  Yet nothing conclusive will be determined.  People might fight about it and spew insults.  And some will want to sing “Kum Bah Yah”.  But neither side will emerge the victor.

And all that drama would be a shame.  Because, I promise you, promise you, my feelings for my autistic child are every bit as loving, protective, and passionate in my belief and faith in him as yours would be for your child with autism or some other reader’s child who has autism or her friend’s child battling autism.   To me, and others who agree with me, they are the same child – regardless of the part of speech.

That’s why I didn’t quite know what to say to you.  Because I won’t win.  People will be upset.  And, we have enough controversy in our community.  We have divided camps over DSM classifications, vaccines, biomedical approaches to autism treatment, genetic research, etc. etc.  I think it isn’t particularly helpful to any of us to insinuate that some of us are insensitive simply because we prefer the adjective lead the noun.  Nor do I think that people who see it differently are idiots.  I think it is a preference.

But it hurts me to think that folks with a different opinion would accuse me of insulting children.  For I love each and every autistic child that I teach.  And I love my child with autism.  I don’t want to upset anyone, but I will inevitably upset someone.

So, that’s the best response I have to you.  And it still isn’t satisfying to either one of us.  But I want you to know that I mean no harm.  And I wish you all the best.

An Apology From Your Child’s Former Teacher

Dear Parents of Special-Needs Children I’ve Taught In the Past,

I need to make a big apology.  You see, I’ve been teaching now for fourteen years, but I have only just recently joined your ranks.

I didn’t know.  Not even a clue.  I thought, mistakenly, that having two special-needs children in my family made me more sensitive to your needs as a parent.  It didn’t.  And I’m so sorry for operating under the assumption that it did.  I’m not attempting verbal self-flagellation here.  I meant well.  I knew a lot about autism and some about other special-needs conditions.  I did care about your child.  And I did want to do right by him.  But, like a lot of teachers who Just Don’t Get It, I thought doing right by him meant giving him extra time on assignments and not allowing him to fail my class.  I thought being extra nice and seating her at the front of the room was what you needed from me.

But you needed more.  And I didn’t understand that.  You needed communication.  A lot of it.  You needed me to understand your depth of worry.  You needed me to understand that, if you’ve met one special-needs child, you’ve met one special-needs child.  You needed me to understand that I was teaching your child, not an I.E.P.  You needed to know, not assume, that I would go out on a limb to make sure your child’s needs were met all over the school and not just in my classroom.  You needed to not worry that, when your back was turned, I was still doing everything that I promised as well as thinking of better ways to meet your child’s needs.  You needed to talk about your child in meetings and not worry about the clock.

I know better now.  In just a few months, I am going to be placing my special little boy into the hands of the public school system.  Because he is non-verbal, I will have no way of literally knowing how his  day went, if he is being treated well, and if those to whom I am entrusting his care really do care about him.  This kind of fear is paralyzing.  And more so because I know just how little training (read almost none) that most of the staff in a public school have in dealing with children like my son.  They, too, will mean well.  But they won’t know.  They won’t get it.  I now know why you carry The Binder of Epic Proportions to every meeting.  Mine is getting bigger by the day.

I look back now at all of your children and wish that I had picked up the phone more, written quick notes home more often, challenged your child more often rather than less, and made you feel certain that someone else loved your baby in your absence.  For that, I’m sorry.  I promise to do better for those kids in the future.  I promise to not assume anything about your child’s unique situation and needs.  I won’t just react to bullying of your very different child.  I will actively be on the lookout for it.  I will remember your child and her possible confusion on activity bell schedule days.  I will take more time each day to get to know her.  I promise to do my best to push, cajole, educate, and even take to task my colleagues who don’t get it in the years to come.  I pray that teacher training will improve in the future and that my son will reap the rewards of that.  And I hope that I am just as patient, kind, and understanding with his teachers and schools as most of you were with us.

And those of you who weren’t?  I get you too.

Sincerely,

Your Child’s Former Teacher