Saturday, February 13, 2010

What I Wish Other People Knew About Having a Child with Autism

(Brace yourselves, this is a long one.)
There is far more about having a child with autism that I wish people could understand than I could write here. There is far more about having a child with autism that I wish I could understand than I could ever write. My experiences as the parent of a child with autism have led me to wish people could understand these things. Since everyone reading this understands really well, some better than I, I’m preaching to the choir, but I have to get this out of my system.

First off, autism is not contagious. Please don’t be afraid to let your children play with mine. Avi is as gentle as they come and he really won’t hurt your children. I’m probably more afraid of having him play with your children than you are! He really is kind and tender. He doesn’t understanding pushing and shoving. He loves other children, but his chances for social play are limited. If you are concerned that he won’t be able to handle something or play the way your children do, ask me about it. But please, don’t be afraid to let him play.

I know it may seem like he isn’t getting anything out of playing with your children, but he is…and so am I. He may run in circles, flap his hands and avoid touching your children or directly interacting with them, but the smile on his face is undeniable. He loves it. He loves having children his age to play with even though he isn’t great at it. I love watching him and a little adult interaction wouldn’t kill me either!

I know that I’ve already mentioned this, but he is not a they; he is a he. I haven’t met all the autistic children in the world so I don’t know what “they” do, but I know what my son does. If you’re curious about autism, ask me about him or it (autism, not Avi), please. I understand this is a petty annoyance, but imagine if I never spoke about your child specifically. “They” is impersonal; it is divisive. It creates an “us” and “them” feeling. It implies that his autism supersedes his identity as a person. I will try to be understanding if you do say it, but I would love it if you would acknowledge him as a person apart from his diagnosis.

My child is not retarded; he has autism. There is a difference, a very big difference. If we’re discussing medical terms autistic and retarded are not synonymous. If we’re speaking colloquially, the word retarded is pejorative. So please, try to avoid saying things like, “I have never really had any experience with retarded children.” Or “He doesn’t look retarded.” I will love you even more if you don’t use the word at all to describe something that is stupid.

I know this one may seem difficult to believe after reading the last two, but please, don’t be afraid to talk to me. Talk to me about autism; talk to me about anything! I’m not afraid to discuss the subject of autism, the feelings I felt initially and how I feel now or anything in between. I don’t know very much about cars, sports or “Lost,” but try it anyway. Just come over and talk to me. I love talking and my opportunities for social interaction are also limited so I would just love it if you started up a conversation.

This seems like a good point to explain this: I know I talk about autism a lot, but my children are a pretty big part of my life and autism is a pretty big part of theirs. If you don’t want to talk about it, change the subject, I’ll get the hint. I understand that autism affects only a very small amount of people, but that is why I am so vocal. I promise I’m not entirely one dimensional. I enjoy listening to other’s talk and learning from them. Honestly, I understand that you get tired of hearing about it, so help me find a different topic.

You may see me in a store with a child whose temper tantrum makes you want to turn and run the other way. You might see me feeling very frustrated with the tantrum, the looks from everyone around and frustrated with comments. Please understand even though my child does not act like yours it does not mean that I am a bad parent. I may curb some of his behaviors that seem innocuous to you, but I understand that they are antecedents to behaviors you probably don’t want to see. I may let him do things that you may think are strange, even bizarre, but I understand that there are certain things he needs to do to balance himself. I appreciate suggestions, but please keep in mind that you probably aren’t the first person to wonder if I know what I’m doing. (Ok I admit it, I don’t REALLY know what I’m doing.)

That said, I'm not perfect. I know I'm not. I make mistakes all the time. I make mistakes in parenting, at work, in school and in every other aspect of my life. I don't want to make mistakes, but I am human. Mistakes come with the territory. But the important thing is that I am trying to be good. I try to be a good father, a good friend, a good worker and student.

I know that I may seem independent but I absolutely want your support. I may not ask for help, but I probably need it. If you think of something you can do just ask if I’d be ok with it. If you can’t think of anything but still want to help, ask if there is anything you could do. I may say I’m fine, that I have everything under control, but your offer means more than you know. It is difficult for me to ask for and accept help, especially because I definitely need it and have asked so many people before. I want you to be an ally, a friend and team member (this is a hint join here or donate here!). I love it when people join our corner. I love the people who support my kids!

Yes, having a child with autism is hard. It is emotionally draining and financially taxing, but I absolutely love my children. I love them far more than I ever thought possible. I once saw a slogan: “autism – the lottery you never wanted to win.” It’s true. I never thought about how great speech therapy would be or how nice the dilemma of telling a person or just letting them wonder might be, but now that it is part of my life, I would never want to forget it. That doesn’t mean that I’m not going to continue to chase treatments and “cures,” but autism has taught me things that little else could. My children bring me more happiness than I deserve. I love them as much as you love your children. Autism could never change that, nothing could. Since this is the depth of my love, of course I want you to love them too. The world may see differences and peculiarities, but I see uniqueness and beauty. This is probably the most important of all the things I wish people knew about having a child with autism: I love my children, both of them, always have, and always will.


Stella Andes said...

Beautifully put, Jared! Good for you that you are so articulate. I love you and Debbie and the boys!

Valerie said...

Awesome post. I'm sure it's obvious to everyone how much you love your adorable boys. I still think you should try to get your thoughts published somewhere. I might do some searching where. :) We were up at South Towne Mall yesterday and thought about calling Debbie to see if she, Avi and Itai were home, but the kids were starving and it was after 6:00 so we went home so I could make dinner.

Mom of 3 Boys said...

As a mother of 2 boys on the Autism Spectrum I applaud you for putting into words what I've thought so many times. Could I copy a couple of paragraphs to put into a letter to my son's teachers? I'll give you writing credit, of course. It is just something I've been needing to say to her in writing (so there are no miscommunication) but have been giving myself insomnia over trying to figure out how to do so without all the feelings that are present surrounding her treatment and responses of my son right now.

I do hope to hear from you.

a friend of Valeria (who has my email address)

Heather and Thomas Mann said...

Beautifully stated! You and Debbie have TWO adorable, sweet, wonderful boys! you two do an amazing job of raising them. While I cannot begin to imagine all of your struggles... I see that you and Debbie are doing are the best parents those two boys can have!

Valerie said...

And don't forget, Jared, that I'm sure that Heavenly Father chose you and Debbie to be Avi's parents for special reasons. You two have things that only you could offer him.

Tiff :o) said...

Sorry for your struggles with Avi's Autism. I can only imagine he heartache you go through but you are inspiring to me in the way you seem to handle everything and what a great advocate you are for Avi.

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