Autism Watch: 2007

Posts Tagged ‘neurotypical

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Yes, but it needs to really kick some butt at school.

What a week. The next time someone tells me “you’re so lucky your child is verbal,” I may have to say “yes, I’ll remember that next time I’m in the office dealing with yet another punishment for his verbal behavior.”

Folks, high-functioning autism, mild autism, Asperger’s, whatever you want to call it, is no picnic. It’s not a party. Not a cakewalk. Definitely not easy street. De-de-definitely not. (Sorry, the Rainman movie came to mind.) It’s autism, but on a level where they’re given enough independence to get in trouble and where their words can be used against. It’s autism, with its meltdowns, self-injurious behavior, lack of friends and social skills, obsessions, repetitive behaviors, lack of proper communication, sensory processing disorder, and other behavior issues. Just because he speaks and can attend a regular class doesn’t mean the autism is any less ‘real’ than any other severity of autism. He still struggles daily to handle himself and get through the day. He isn’t being controlling to be sneaky or be a brat, but instead, it’s to have his environment be comfortable and the restricted, routine way that makes him most comfortable.

Despite all that, daily, our kids are lost. They fall through the cracks but there’s those with ‘real’ disabilities to deal with. They appear normal, whatever that word means, to those who aren’t educated specifically in the autism spectrum, with focus on the word spectrum. Their ‘normal’ appearance is so misleading that others forget and try to fit them in the same mold as the neurotypical kids are in, and then they complain because the results aren’t what they think they should be.

Try to put a square peg in a round hole, and you may be able to hammer it in, but it will look awkward. It won’t all fit and it will stand out. It may crack and there will be gaps. So just because you get it in there doesn’t mean you were successful in anything other than forcing something that wasn’t supposed to happen. That’s my son, forced into the role of a round peg when he’s definitely a square peg. Is a square peg wrong? Not at all, but if you continually tell someone they need to behave differently than they are, they start to wonder why, and they start to feel badly about themselves. Then you can add self-esteem and confidence issues to the list of pre-existing problems caused by the autism — but these issues are caused by ignorance and not the autism directly.

My goal now is to increase autism awareness so that my son is happy. I want every child with autism to be happy, but I need to start with my own. Awareness month here is a big deal. We are putting out 12 blue light bulbs tonight so our yard is rimmed in blue. I’m dying some of my hair blue tonight — really, a bright dark metallic blue. Awareness ribbons, magnets and pins will be visible and I’ll be continuing to ask random businesses, and strangers, what they’re doing to further awareness, while explaining autism to everyone I can. But I am focusing on high-functioning autism, the children that don’t fit the mold, those that are misunderstood, and those that are falling in the cracks because few know what to do. My goal is to decrease the number of people who don’t know what to do with my son.

My son is my light, my joy, and a blessing to our lives. He is funny, smart, wise beyond his years, and thinks outside of the box. He has a mind for computers and logic that amaze me, and a memory that puts most to shame. His stories are so entertaining, and his lack of a verbal filter means he keeps us on our toes and gets adults thinking outside of the box too. Not a single person who has given him the chance to talk can say that he didn’t impact them. I hear throughout the years, from everyone who has worked with him or talked to him more than a minute or two (which isn’t nearly enough, because if you are uncomfortable around different people, you tend to not give him the chance he deserves, which is seriously your loss) that they love him and they want more time with him. People get him, if they open their minds and allow it to happen. Stop putting kids in a mold, see them for what they are, and accept them. Your lives will improve, you will learn more, and my son will face less discrimination. Win-win.

I’m off to go get the light bulbs ready and see if there’s a blue snack I can send to my son’s class tomorrow. He won’t know the significance of it, but adults might and if nothing else, how many snacks are blue? It’ll be yet another different exposure, and that’s never bad.

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This week, I tried to enroll my son in an event where I thought he’d be okay. He knew about it prior, and wasn’t totally opposed. He’d stated a couple of demands, which were do-able, and agreed to go. I knew it’d be a stretch, but he’s done it before and while we never quite know what will happen on The Big Day (in front of an audience), no disasters. I knew we’d have to pick our battles while there, and not sweat the small stuff. I was officially involved, and planned on being accessible to him the entire evening. All the plans were set, and things should go smoothly, right?

Not so much.

As soon as we arrived and ds saw a lot of other kids running around, both young and old, his ADHD side came out. Big. Time. An instructor stepped in, wonderfully so, and got him back on task, though it wasn’t without some dancing on his part. Dancing is a battle I won’t fight; he wasn’t disruptive to the other kids, he wasn’t touching anyone else, and he was still doing what he should have been. But that’s when it went downhill.

Maybe, because I was in a place where I knew most people knew about him, a place where you wouldn’t expect judgmental stares, I got comfortable. Maybe I assumed people would be understanding, based on the environment and our longterm involvement with this group. Maybe I just figured that kids were kids, and parents would be just having fun watching their children in this event, and not really worry about someone else’s kid. I don’t know, but in any case, I was wrong.

It didn’t take long at all before I saw a few gestures. A few stares. The stares lengthened when my older dd tried to step in and help. Personally, I think she saw the stares and glares before I did, and her defensiveness came out, so she joined in to play with him and downplay (pardon the pun) his behavior, and I love her for that. But, I don’t think it helped. The stares continued. Sadly, I even saw a couple looks of total disdain, complete with scrunched eyes and curled lips, as though someone had brought an unruly poisonous naked snake to a mouse party.

And that was just the beginning.

We continued on with more preparation, and ds refused to cooperate. In fact, he hid under desks, chairs, and any other piece of furniture an adult couldn’t fit under. I resorted to calling dh and handing my very expensive new Smartphone to ds so dh could talk him out. He did do that — ds eventually came out — but by then, we’d missed most of the practice, and more and more people were walking by staring. I told ds he didn’t have to participate. He relaxed and started running around and smiling (noisily) again. And that was that.

Me though? I had to remind myself a few times that I was not going to lose it in front of people, particularly people who looked at my son like he was a wild out-of-control brat. I felt embarrassed, and then immediately ashamed of that embarrassment — why should I care what a bunch of people who are ignorant of my son’s issues think? I felt angry. How dare people look at him that way. They have no idea exactly how far he’s come, what an amazement he is, what a miracle. And how dare people be hypocritical, to look at my son, in this particular building, without the love and compassion and tolerance we’re taught to have?

For a few minutes, I felt the same helplessness and lack of control I felt in ds’s earlier years. The ‘what do I do now?’ panicky feeling, where you want to grab your child and run home because you have no clue what to do and you just want the event over with. Four years (to the week) after his diagnosis, and those moments apparently still come.

Thankfully, we have friends there. Their support curbed some of my anger and frustration. They expressed love for my child, and told me to ignore those who didn’t know him. They spoke the truth, but it can be hard to do. My husband reiterated it when I returned home, reminding me that WE know ds, and if ds is happy and behaving as we know he can or should be, that’s all that matters. I need to let go of making ds do something just because ‘normal’ kids do it. If he’s happy, I need to not worry about him missing out on something. Sounds so easy, and makes so much sense, but there are days it doesn’t just fall into place.

Later that evening, ds sat at his new desk in his new room, in his new red flannel soft polar-bear-covered pajamas, doing his math homework. His hair was brushed and curled over his collar. He declared his tiredness, and climbed into bed, after I fixed the proper blankets into their proper places. After a sweet goodnight prayer, where he prayed that I would have a good day and thanked God for all he does for him, he was asleep in minutes.

What a doll. I am so blessed. He’s an adorable, loving, smart doll who just happens to be hyper and have social and communication issues and meltdowns that’ll put hair on your chest. And he’s my doll. He’s my gift given to me to raise, and dh and I are the only ones who know how to do that. So for those who want to stare, go for it. Your actions aren’t just obvious to me, but to others. They speak volumes. I may not know your name, but if you think about it, you know even less of my son that enables you to be so disgusted or turned off by his behavior. (And for the woman who put up her hand to keep him away from you — I don’t even know what to say.) Everyone out there with children, it’s just the matter of a funky gene or a vaccine or some other environmental toxin that separates us from you. It’s not our parenting, and it’s not my child’s intentional behavior. It’s as much of my son’s personality as rudeness or lack of tact or judgmental behavior is to a ‘normal’ person.

And in the end? I’ll take my son’s behavior over that. I’ll also continue to be so proud of who he is and what he’s become. I’ll refrain from waving my hands to quiet the room to educate, when it’s really no one’s business, and instead, I’ll save my time and energy to continue to help my son. I refuse to let the issues of others make negative changes in my life. I can’t say that I am not disappointed. There are places you don’t expect that type of behavior, and this was one of them. I can’t say that I don’t feel like autism awareness has a LONG way to go — people out there still think it’s an excuse, or it can be medicated or disciplined away. I try to blow off what I see as selfishness, a refusal to realize that one’s own children aren’t the only ‘perfect’ kids out there, or to acknowledge that one’s own style of parenting isn’t the only way. And I can’t pretend not to be a little sad that people are missing out on the gift that is our children. I won’t let their negative energy make me miss out on it either. Every day with our kids, perfect, ‘normal,’ ‘neurotypical’ or not, is a gift. All kids are miracles. We’re all in this world together, and loving thy neighbor works a lot better when we move past the stares and instead work on acceptance — if we can’t accept small children, how can we really accept any adults.

One thing that strikes me as odd, as perplexing and disturbing, is that despite how we parents of autistic children want and expect tolerance everywhere — school, restaurants, airplanes, churches, anywhere — how quickly we turn when our child or our child’s class has a difficult experience with another special needs child.

I use the word “we” obviously as a generality, not a blanket statement because this doesn’t apply to everyone, but “we,” the parents of autistic children, are our own community. Within that community, we share our stories of school problems, insurance issues, health dilemmas. We seek support and information, and we commiserate, truly commiserate, with others within our community. But, apparently that stops when another special needs child bites our kid…pushes him on the playground…disrupts his studies one day in class…says something mean, and so on.

Now, I’m not saying that we should put up with anything that other special needs children do, but how can we rant about what a neurotypical (aka non-autistic) child does to our autistic child, when we do it ourselves? How can we expect others to be more tolerant if we exemplify “do as I say, not as I do?” Doesn’t real tolerance mean understanding that the other special needs child needs that same compassion we want when it’s our child causing the problem?

I’ve been on both sides of this. I’ve been the parent of the child treated badly by a neurotypical kid, the parent of the child punched by another autistic child, and the parent of the child biting another child. (And the child he bit? Autistic as well…but to be an equal opportunity problem, he has punched a non-autistic child, too.) I know how frustrating it is when you have to fix your child’s boo-boos that were caused by someone else. And I know how frustrating it is when you have the school call you to tell you your child hit someone else, and the parent is unhappy. Neither side is a pleasure. Maybe having been on both sides has helped me to understand it more — maybe it takes having your child be the problem at least once to truly get what it is like, the mix of emotions that you feel, the need to protect your child but the knowledge that he hurt another child, or hurt the child’s feelings.

I met a parent recently who wanted to call the police because a child in her daughter’s special-needs classroom bit her daughter, a couple of days after the child pushed her daughter. She was angry, and wanted something done. I didn’t blame her, I understood the need for a quick and safe resolution. But it also needed to be fair. And fair to both. Sure, the other child shouldn’t bite and shove, but where was the teacher? Why wasn’t there supervision? And why isn’t that supervisor, or the person who failed to secure it, the one in trouble? And why call the police? Did I mention that this child was 8? People don’t realize what calling the police does. It mars the child’s future, it leaves a nasty spot on his/her record, and that of the parents. And autism is widely misunderstood, so the special needs child who clearly needs more supervision and behavior training gets to learn to deal with the police, seeing his parents stressed, and all the legal hoopla that it brings. Who in the world wants to bring that onto another family?

In short, if we’re going to ask the world to accept our children, we have to be ready to accept our children.

Mine, yours, all.

If we want the general public to tolerate our children’s behaviors, we can’t be the pot calling the kettle black…or calling the police or making a scene with another family because their child displays behaviors due to their disability. If we want fairness, we have to display fairness in return. It only works when we all want the best for all our children, not only when it suits us.

If you’re faced with a situation where another special needs child hurts your child or upsets your child’s classroom, remember what it feels like. Remember that support is critical. Remember that this family may or may not have the support or knoweldge they should have, that you may have. Be a help, and in the spirit of a resolution that works for all, don’t take it out on their child. In the wrong situation, it could be your own. What kind of response would you want then?

If you’ve read this blog for a while, or my old one, you probably know that I have an issue with what ‘normal’ is. There are times where I think that those on the autism spectrum are much ‘normal’ than we are, and how I’d love to have some of my son’s kind of normal in my own character…but that’s for another day.

Anyway, today I went to pick up my son from school. I wait for a few minutes, among droves of other parents. As my son runs out, literally knocking me over backwards into someone standing behind me, he’s yelling, excited to see me. Then he sees another boy from his class, and steps up to tell him goodbye. Granted, my son is over-exuberant often. He’s a child of extremes, always has been, and it’s only continued and sometimes worsened over the years. So he grabbed this little boy’s arms exuberantly, saying “Goodbye!” and other similar phrases repeatedly. The little boy responds, smiling, but mom instantly goes on alert. My son is not only half the size of this other seven-year-old child, but he’s clearly not hurting this little boy at all. I pry ds’s hands off the boy’s wrists, tell him to tell him goodbye for the final time, we’re leaving. Apparently, that means “give a big bear hug,” because that’s what he did. Mom looks even more disturbed. The friend standing with her looks aghast (I’ve never had the opportunity to use that word until now!), mouth hanging open. Maybe in her world, boys don’t hug or this boy is made of glass. Either way, he was smiling and laughing, and mom starts to say “Okay, that’s enough.”

Stop the truck. I’m right there. My child is not hurting your child. Your child is playing along, laughing, and you see that I’m in the process of leading my child away. So you feel it’s necessary to say something? Meanwhile, even though I’ve looked up and smiled, you can’t acknowledge my presence and basically treated us as though we were some dirty homeless bums with leprosy asking for spare change. 

What is wrong with people? This woman must know by now that my son is special needs. He has an aide. He clearly has some issues that she’s seen, because she’s a hovering mom. Hover all you want…but have a little compassion. Or plain out, be nice. That’s what’s wrong in this world today — people are nowhere near as nice as they could be, and so often refuse to open their minds. Children are routinely rude to others because mom and dad let them, and often under the guise of “Well, I want MY child happy, and being nice or not trampling your child to get in line first, well, those things don’t make my child happy, so I’m tolerating his rudeness because his happiness comes first.” Way to go.

Sure, I’m being a bit judgmental here. Not everyone’s like this, and out of those who are, some have valid reasons. Others, they aren’t selfish on behalf of their kids — they’re just ignorant.

I don’t believe necessarily in announcing to the class that your child is autistic, since so  many people mentally check him off the list for a party or encourage their child to play with someone else, but I’m beginning to lean more and more towards some sort of ‘special needs talk,’ or something that addresses the fact that all children are different, some behave differently, and that we are nice to all…then send a copy home for the parents. It could mention that there is/are special needs in the class and we need to remember that before we make faces or judgments or shorten our party lists, without singling out the child/ren.

All that aside, if someone hugged my son too hard, he may not like it but I’d not let my mouth hang open. I’d not tell the other child to get off, unless he was being hurt or the child had no supervision, and even then, I’d still think twice. My son wouldn’t make a judgment or decide that child was weird. He blessedly doesn’t notice these things like ‘normal’ people do. I wish I could be more like him, not being bothered by what others say or do about us. (I’m not even brave enough to go pick him up at school without changing out of my comfy clothing and into something ‘acceptable,’ nevermind the fact I was fully-clothed and what I was wearing wasn’t bad…) So who’s normal — we ‘neurotypical’ people who make judgments of others and stare and worry and even dare to state our opinion towards another whom we don’t even know, in a negative way, or the people who disregard all that, don’t interfere with others’ lives, and are happy. I think I’d vote for the happy people.


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