Fireside Chat with The Autism Mom

I had a child in 1993.  He was little and had blond hair that was curly and I loved him fiercely.  Suddenly he is 21 years old.  He seems little and still has curly blond hair and I still love him fiercely, if not even more than that.

He is a great kid.  Expressive, sensitive, emotional and friendly.  He isn't afraid to speak his mind and he basically is very honest in those opinions and not afraid to call something exactly what it is.

On the other hand, his mind works like Google.  Some days that's a really cool thing.  He is good at compensating for the skills he lacks.  He thinks critically and creatively, coming up with ways to do things I wouldn't have guessed in a million years and usually they work.

He went to Israel and to a special school for autistic youngsters and learned Hebrew fluently.  I don't know if I should feel proud or embarrassed that my kid chased down a bus that had left me behind, screaming just like a true Israeli in Hebrew...and correctly.

But life is not all a bed of roses.

Hygiene isn't a priority so often I am sending him back to take a shower 3 or more times.  He says he feels fine so he'll skip his medication that fights off his depression, anxiety and ADHD.  He is sloppy and disorganized and has the attention span of a fruit fly.  He can wash his own clothes, though after discovering that he used half a bottle of soap, I also discovered supervision was a must - but getting them from washer to dryer to upstairs to folded and in his drawers is a challenge unequalled.

He mows the grass but his ideas are more creative than straight lines and we joke and call it crop circles.  He spills the gas when he puts it in the mower.  Its not that important to him.

He wears his jeans so that they almost fall off and if I ask him to do more than two chores in a day, I've found it's better (though not always) to stagger them.  Get him to do two and then throw the third one in.

Autism is a challenge to parents and to caregivers.  While your child may appear neuro-typical (I hate to use the word "normal"), he really isn't.  And you know this when he tells the lady at Social Security that he wants to give all of his money to Mickey Mouse.  He gets furiously angry when he feels that he is not respected.  He also gets furiously angry if he feels *I* am not respected because out of everyone in this world, he knows we are devoted to one another - that when the cards are down...it will always be us two.  I will protect him and he tries his best to protect me too.

But in between there are disappointments, challenges, every day things that most parents take for granted.  I am sure there are things other autism parents wish they enjoyed with their children because I know and I am grateful for the blessing that my child is not severely affected by his autism.

But he also knows he is different and that destroys me inside,  He knows why people stare at him and why he never got invited to parties when he was young.  He can describe this pain to you and when he does, I often wish he didn't know, that he didn't get it.

He knows he will never drive and while he wants a girlfriend and family so badly, it's something I can't visualize right now.  I couldn't visualize him learning Hebrew either so I wouldn't go and get Vegas odds on it.

I just wish I could kiss him and make it better.  I love my son more than there are stars in the sky.  I try to build his world by taking him to the Pittsburgh Broadway Series, the museum, hiking, geocaching....things I hope will open his world and allow him to experience it in its entirety.  I want his life to be full and rich, not a place where he is called Retard by close relatives, and not a place that he can't trust.

I'm pretty sure I have done this and I won't tell you it was easy.  Teaching a child with autism how to act in public when they are only two is a mission.  But my child knew that if he threw a fit, there would be consequences.  If I found out he had done something untoward at school (like painting his adaptive writing desk orange), even though I laughed inside, I made him write a note apologizing and I did this with him throughout his school years.  He knew not to waste people's time when when they were working with him.  I taught him to be polite, to hold doors open, to care for older people and his peers who weren't as abled as he was.

All in all, I am proud of the way he turned out.  He can make his own appointments (if they interest him, of course), he can complain about a model that was missing pieces by calling the customer service number, he can advocate for himself to a state senator (and yes, he did!).  Will he ever brush his teeth or take a shower correctly or take his medication?  Will he ever cook anything other than noodles?  I don't know.  Depends on his priorities at the time.

Basically, just as I felt holding that newborn bit of baby, I don't know WHAT will happen.  I only know I have given him the tools to help make that happen.  Could Mickey Mouse become rich off of him?  Probably not but I do know that while in Israel he gave generously to old ladies forced to beg in the street.  Once he gave a 20 shekel note to a beggar which was a lot of money when you don't have any and at the time we didn't.  But he told me, someday we will be wealthy again Mom and that man was unwealthy and he needed it.

I so love the child I created and the young man he has become.  Would I change anything I have done?  No.  Would I remake him without autism?  That's a hard question but I'd have to say no.  He is who he is BECAUSE he has autism not in spite of it.  He wrangles with it, he often struggles with it and while it doesn't define who he is...who he is has a lot to do with a boy raised with autism.

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