Yesterday, April 2, was World Autism Awareness Day, a day where we “recommit to helping individuals on the autism spectrum reach their full potential,” according to President Obama in yesterday’s Presidential Proclamation.
I wasn’t sure what, if anything I wanted to say about World Autism Awareness Day as a parent of a special needs child. I feel confident that at this point, most people are aware of the existence of autism. Hopefully, they are aware of the rising number of kids diagnosed autistic and are concerned about the possibility that this is an epidemic that will have long-range effects on society as a whole. While I can site stats and facts about autism, there’s nothing I can say that can make you understand what it is like to have a special needs child, the good and the bad, if you don’t have one in your life.
For example, to parents with typically-developing babies who, say, didn’t sleep: You can try to explain to people how tired you are. You can tell them how you fell asleep stopped in your car at a red light, or how you can’t think straight, or list the times you were up the night before to console the baby. However, they will never fully understand the physical and emotional toll that sleep deprivation causes unless they’ve experienced it themselves. They’ll try to be sympathetic and some may even offer to help somehow. They are “aware” of the problem you are having, but they aren’t living it, so they’ll never understand. I don’t mean this as a slight to anyone. I think the most that friends can do is listen–and offering to help goes above and beyond. Our friends can’t live our lives for us, but their support helps. Awareness helps.
For World Autism Awareness Day, I would like to request more than awareness from those unfamiliar with the challenges of special needs families. I’d ask for your tolerance.
One morning as I stood in front of my townhouse in my busy neighborhood with M. waiting for his bus, a mom from the “regular” bus stop approached me and asked me why I had a bus stop in front of my house. She pointed to her home a few doors down from mine, about a block or two from her child’s bus stop, and asked why she wasn’t assigned a closer bus stop. I explained that my son has special needs and has to take a special bus. “Oh, I was wondering why you didn’t have to walk to the corner.”
The exchange with the nosy woman pushed my buttons. I wanted to scream at her– at all the normal parents at the normal bus stop with their normal kids getting on the normal bus. Don’t you realize that I’d give anything to have to walk to the corner and be able to put M. on your bus?
Although her tone was rude and she really should have minded her own business, she was just curious and nosy. I thought it was ironic though, that I was jealous watching those moms at the corner chatting while their kids played together everyday, while M. and I stood alone in front of my house; meanwhile, she was jealous that I didn’t have to walk to the corner. I wondered if the group on the normal bus stop had peeked at me and discussed my “special treatment” while I watched them from down the block.
Back to tolerance. I don’t know one parent of an autistic child who scams the system for special treatment. Do we fight for what is owed us under law? Yes. Do our kids get special considerations, such as a special, smaller, quieter bus equipped with an aide? Yes. We know our kids suck up some of your resources and we raise your school taxes. We’d rather not. Please be tolerant.
Do we enjoy when our child has a meltdown in public, at a restaurant or in the grocery store? Nope. But we need to get out and do things and we have to bring them. Also, we want them to learn how to behave in public and that takes practice. We know you are paying for a nice meal out and that back in “your day” kids didn’t act like ours. Don’t judge us. Trust me, we’re doing our best. It may not be perfect, but we try. Please be tolerant.
Sometimes we get an advantage, like skipping lines at the amusement park. Maybe this annoys you. Your kids aren’t exactly patient and it’s hot and you paid your admission too. Try to remember that we pay a price to be able to skip that ride line and have considerations such as door-to-door busing: endless therapy appointments, doctor appointments, school meetings, etc. etc. etc. It may sound crazy to you, but we’d rather be waiting on the long line. Please be tolerant.
We love our kids. Our kids are awesome in a different way than your kids. And we try. I don’t know any parent who doesn’t. Your understanding and patience and tolerance would make our day a bit easier. So on World Autism Awareness Day, I ask you to show tolerance for kids and their parents and remember that all kids are different, and some are autistic. In fact, according to President Obama, 1 in 88 children in America is autistic. Autism isn’t going away, unfortunately, and you will be seeing a lot more of us.
Thanks for reading and have a nice night.
Waiting on a Word 
Beautifully written, thank you from somebody who knows your struggle, we do our best for our kids. Trying to teach them the skills that come naturally to most children. My son never wants to get rid of his Autism he said it makes him who he is, a beautiful human being who is just a bit different.
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I love that he embraces it. Thanks for your comment and your nice words.
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I’ve never really understood intolerance over things other people can’t control. I got mad at people who started complaining about screaming children in places like Walmart, even when I was very young. I had five brothers and sisters, and my mom would complain in the store, and I would think, If we all started screaming, what would you be able to do?
If others would apply those sorts of predicaments to themselves, how could you ever, ever be intolerant?
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Yes, agreed. Good points. Sometimes it’s hard not to get annoyed. I understand that. But we are all doing our best I think. Thanks for commenting 🙂
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“Don’t judge what you don’t understand.” This was an excellent piece, Jess. Thank you for educating us and giving us parents with “normal” kids a glimpse into what it is like to live everyday with a child who has Autism. This post was very powerful.
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Thanks for your support 🙂
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So good. Well written and insightful as usual. I love your point about how no one can live our lives for us. I think that many people would accept the basic truth about that statement while acting as if they do not really appreciate that truth. You can never “walk a mile” in someone elses “shoes” –that is the point! It is not “special” treatment. It is “appropriate” treatment. The nosy folks really have no insight. I am impressed that you can tolerate them. Inspiring, really.
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Thank you so much for your nice words.
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Have you read the Curious Incident of the Dog in the Night-Time? I am reading it now and its fantastic. Shows just how special and inspiring Autistic children can be.
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I have read it and agree, it was fantastic. Such a great view of autism.
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Really well written. I would like to say that I’m accepting, tolerant and understanding (whatever anyone want to call it, or rather whatever is proper for what I mean) and I really want to be that way (probably generally I even am, to my surprise), but in fact I have to admit that this post gave me something to re-think. Seriously. And not only about autism. Thank you and have a nicest day/evening 😀
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Thanks for your comment on this post. I’m glad that it inspired deeper thoughts. I hope you’re readjusting back to home after your lovely trip.
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😀 The thoughts were about how judgmental I can be, where my beloved intellectual discipline would like me to be more reserved in opinions in general.
And yeah, I worked out everything that had to go off schedule 😀
“Live long and prosper” 😀
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I was the manager at a theme park and part of my job was policing the 32 benches for the disabled. It was an eye opening experience but it made me feel good seeing the parents having some moments without worry, stress, and being able to be like everyone else and enjoy a show with their family member.
When I stress out about my son’s “huge” issues; it puts things back into focus for me.
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That’s a great experience to monitor the benches- I’m glad that you were able to see the goodness of the parents. It really does change your life view when you are around the kids and the parents- puts it in “focus” like you say. Thanks for reading.
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I have a son with Tourettes syndrome. Its been a long,difficult journey but I am a better person for it. Best wishes to you and your family.
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Thanks for reading and commenting. I wish the same to you and your family. It certainly is a journey.
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Being the father of a special needs child, I do find things difficult at times, but manageable. My biggest stumbling block, when finding out years ago about my child, was overcoming the inadequacy I felt. I so was unprepared, didn’t know what to do, had others intervene for us, ignored it for a while, etc. You name it, we did it. In the end, though, I know I’ve grown more in the past few years than any other time in my life…and it’s all because of the love I have for my children. This was a great post, Jess, and you’ve captured the essence of being a parent of a special needs child.
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Thanks, Jack. I appreciate your comment and your struggle. I understand about your growth too. It changes you. It’s hard and it’s challenging but it’s all good. We do the best we can, and our kids really are great and “special.”
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Raising a child is hard enough and you’ve captured some of the challenges of raising a special needs child. I wish you the best as always.
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Thanks, Al! I appreciate the read and the comment.
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