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Parenting on the Spectrum - What I've Learned So Far

5/24/2014

4 Comments

 
Picture
So if you are reading this chances are you know me, you know, because I'm an international star. And you probably know that my youngest son has autism. If you don't know me, I'm not an international star and my youngest son has autism. If you know anything about autism you know that it doesn't take one form, and that one kid with autism is probably totally different from another kid with autism...you know, how most kids are totally different from each other. Anyway, I'm certainly no expert and I'm not here to give you a bunch of strategies for parenting an autistic child. It's hard. I don't know what I'm doing. I worry about Hank every second of the day. I've probably made five poor decisions regarding Hank today alone. But I have learned a lot in the year-and-a-half or so since his diagnosis, so I thought I'd share some of that. And I'll share more stories of Parenting on the Spectrum right here as we continue on this journey.

  1. So let's start with the obvious: it's hard to hear that your kid has autism, then to let it sink in, to see it in action, and then to start to figure out how to help him meet his potential...which, come to think of it, isn't really that different from parenting our other kids.
  2. Hank doesn't really lie. There are lots of things about autism that really suck and are really hard, but this part is pretty great. He'll always tell you the truth. If there is a fight, Hank will tell us what happened. His brother and sister haven't figured this out yet. 
  3. You can get a fast pass at Disney. We only used it once. And I know a lot of people abuse these passes. But I put it here because it's pretty great that it even exists - that the world is becoming slightly easier to navigate for folks with autism. Our only problem was that getting him onto rides was no big deal, it was getting him off. 
  4. I might be one of the world's leading Thomas the Tank Engine scholars. Hank loves trains. He loves Thomas. So we watch a lot of Thomas. And let me tell you, that Island of Sodor is a weird place. So much confusion and delay. Seriously, those trains have a catastrophic accident every episode. Workmen's comp must be through the roof. On the plus side, Sir Topham Hatt is also called The Fat Controller, so there's that.
  5. I've gotten to know a lot about insurance...and how they prefer not to pay for things that they legally have to pay for. In PA we have a law called Act 62 that requires insurance companies to pay for a pretty broad swath of autism services and to not do stuff like deny your kid therapy that he needs. Turns out my insurance company thought they could not follow this law. Bitches forgot this mother-fucker has a PhD and a wife who doesn't take shit. We knows how to do us some research and writes us some letters.
  6. Speaking of which, I've found out that I'm capable of learning a lot about something really quickly. Maybe all my years in graduate school were really prepping me for parenting an autistic child. 
  7. Making eye contact, articulating spontaneous thoughts, and giving full on hugs are moments of celebration. They are hard for Hank. Come to think of it, in social situations they are pretty hard for me too. So when Hank does these things (and I do them too) it's a pretty great feeling.
  8. Most people will assume that I simply can't handle my child if he has an autistic fit in public. You might offer helpful (shaming) advice. It is very hard not to punch you in the face when you do this. We know that Hank kicking and screaming in public is inappropriate. I don't need you to come up to me in the store and tell me "This one might be a little soccer player someday." or "Santa's always watching." I need you to shut the fuck up. Even if Hank wasn't autistic, I'd need you to shut the fuck up. Do you think you are doing some sort of public service? That it really does take a village and that you're the self elected parenting elder? That the rest of the store is the silent majority quietly clapping in their minds as you provide your sage shame quip to set the Earth back on its axis? Because I think you're an asshole. And being a passive-aggressive Midwesterner I'll say something like "Thank you." But some day very soon I'm going to shame you back and pull out the autism card. And then punch you in the face.
  9. I've learned how to lose my temper over stupid things (see above...though that isn't stupid), and more often, to try and control things that I can't control...and every once in awhile to not lose my temper or try to control things that I can't control.
  10. I've learned that my wife is pretty amazing. And that my other two kids are pretty amazing. And that Hank has a pretty amazing circle of people supporting him.



4 Comments
cfb
5/24/2014 11:28:01 am

Yeah, your wife is pretty amazing. And so are your kids. And so are you. And you are kind of tall too--which isn't amazing but true.

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Amy Darnell link
5/24/2014 11:35:52 am

Matt,
As the aunt of an Asperger's nephew, I recognize so many of these things that you write about. Keep fighting the good fight... like you have any choice. :)

Reply
Aunt Karen
5/24/2014 01:51:05 pm

Matt,
I am ever so proud of the way you and Jeanette have embraced Hank's uniqueness. No, it's not easy at all to hear that your child has autism. In my experience as a speech/language pathologist, I have encountered too many parents who have not accepted the diagnosis. This not only hurts them, but many times it prevents the parents from accepting the supports that are available--and oh, so necessary--too. Denial is uglier than the diagnosis. You've both worked hard to seek out the supports you need, and that is more than half the battle. You've done a great job of it, too. I have not said much to the two of you, trying to respect your privacy and not wanting to interfere, but know that I am always just a phone call away should you need to talk about anything.

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CA stl
5/24/2014 02:19:16 pm

Enjoyed reading this piece by an up and coming international star. Hank has such an amazing mom, dad, and family

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    Matt Fotis is an Assistant Professor of Theatre at Albright College. He is the author of Long Form Improvisation and American Comedy - The Harold, The Comedy Improv Handbook, and "My Fragile Family Tree: Stories of Fathers & Sons." 

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  • Home
  • Scholarly Work
    • Satire & The State
    • Long Form Improv & American Comedy: The Harold
    • The Comedy Improv Handbook
    • Articles & Essays
    • Conference Presentations
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    • Courses Taught
    • Sample Syllabi
    • Workshops
  • Playwriting
    • Short & Sweet: A Collection of Short Plays
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    • One Act Plays
    • Full Length Plays
    • Solo Plays
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    • Bio
    • Contact Me