Wednesday, January 25, 2012

An Open Letter to Parents of Autistic Children

An Open Letter to Parents of Autistic Children:

I've been ruminating on this post for quite some time, so bear with me.  Like most of my posts, this one will likely be long, rambling, and not as funny as I think it should be.  However, I think it is important.

This blog gets a lot more traffic than the "following" widget shows.  While some of my readers land here looking for porn (seriously? nude Aspie?), most people use search terms such as "what to do with my autistic child?" and "will my autistic child be ok?" or variations thereof.  I do, invariably, get a little bit of e-mail from people that land here.  Some of it is rather rude, but most of it is sent from a place of desperation and a need to feel that everything is going to be all right.  This letter is for those parents who feel as though they have an endless struggle on their hands, and they are looking for a little encouragement.

I would like to apologize to you.  I cannot tell you that your child is going to be okay.  I cannot tell you that he is going to be high functioning.  I cannot tell you that your child is a genius inside his silent shell.  I can't promise you she will ever speak to you or hug you or be able to wear jeans without melting down.  In short, I cannot lie to you.  Some of your children will never say "I love you, Mommy."  Some of them will never look you in the eyes.  Some of them will never move out of your basements.  I'm very sorry.  On the other side of the coin, some of your children will learn affection, and some of them will soon talk your ears off and some of them will get married and have children of their own and tell stories at Christmas like, "Remember that time that I stood on the kitchen counter and shouted 'Bebo! Bebo!' over and over again because it was the only sound that I used to be able to make?"  Some of your children are Albert Einstein or Temple Grandin inside.  I wish I could tell you that your little Bert or Gertrude was that person, but I can't.  I cannot lie to you, even if you are desperate to hear it.

All I can do here is tell you how I function and how I feel about things and ideas that work for me to keep me functioning on a day-to-day basis.  I am but one person with autism, and I'm different from all of the others.  Therapy and social training worked for me in ways that it has not worked for others, as we are not all the same.

What I can do is give you a little shimmer of hope.  All is not lost.  I consider my story a success, and there are many other successes out there as well.  Your kid's may be one of them.

I know that a lot of you feel as though your child's diagnosis is a death sentence for your hopes and dreams for your little one.  I also know that you can't say that out loud without judgment.  If you need to say that, you can say that to me with zero judgment at all, and I can promise you that.  That feeling is perfectly ok, and it is perfectly normal, and, for some of you, it is perfectly valid.  For others, new dreams will emerge, and for others still, all of the original dreams will still come true.

To conclude, I want you to know that I am here for you, and you can vent to me, but please don't ask me to lie to you.  I can't.  I respect you and your unique child too much to do so.

With as Much Love as I've Learned to Give,


3 You Said What?:

mollyrobin said...

Karen, you continue to be an inspiration to me because you ARE honest. Keep doing what you are doing. Even if you do it in the nude. ;)

Jester Queen said...

Amusingly, I landed on your blog from the top 25 funniest Moms competition over on Circle of Moms. I have two kids on the spectrum, daughter with Asperger's and son with ?? probably Asperger's too, but possibly HFA. He's still on the diagnosis train.

My husband also has Asperger's. The only reason he isn't diagnosed is that he grew up before the word 'Asperger's" existed as a diagnosis. But he had therapy for most of his childhood and needed tutors until sixth grade.

He has a PhD now.

So I'm not too fearful (except on the really bad days) about my kids futures. But I see the parents who have had to come to love the child they have, rather than mourning for the child they expected, and I feel so deeply for them. Scott and I are lucky. For our kids, Asperger's (or HFA or whatever Sam turns out to have) is just part of the ride. It's a thing that won't ever define them.

Some of the kids I know will probably always be defined by their autism. And that is hard.

I hope your letter is a ray of hope to the parents of kids who are somewhere in the middle. Yes, OK is possible. And hurray as you near graduation, too!

TheAutisticStepmom said...

Hello, there, jesterqueen! Nice to see you! I'll come check out your blog now :) I didn't know that Circle of Moms thing advertised for me. Neat. I haven't had a chance to browse the site, yet. It's on my "things to do after I graduate and have time" list.