Wednesday, September 1, 2010

A Piece Of The Puzzle

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Yesterday, I sat on the bench outside the dojo watching Mister Man's Tae Kwon Do class. I knew it wasn't going to be a good class for him before it started. I could tell he was tired and that his focus wouldn't be there.

Before the class started, instead of sitting, he was folded forward pushing his head into the floor and rocking. When the instructors began class and asked the children to sit at attention, he was facing sideways and not on his number. Internally, I groaned.

I debated pulling him from the class to avoid it being frustrated for him, but I didn't want to embarrass him. And we'd had a chat before the class about the behavior that was expected of him - he had to wait for the instructors to demonstrate something rather than doing it on his own in his own way and he had to pay attention and do what they asked the first time - or he knew that he'd take a time out from the class. I sat back and waited, crossing my fingers.

When they did the straddle stretch, he couldn't stay still and stretch. With relief, I saw that he wasn't walking back and forth on his hands and feet as he'd done in previous classes, nor was he picking things off the floor and putting him in his mouth. But he had to stim. I watched his knees bouncing up and down as he "stretched" with the rest of the class.

When the orange belts lined up to work through their skills, he couldn't keep his feet still when doing the punches and blocks. He was dancing from side to side as he punched, as I watched the other two students stand still and do their punches firm and straight. As the punches got more complex, his got more sloppy and he moved more. My heart ached to help him, but the dojo is his ground, not mine.

The other parents were also watching their children - and I'm sure mine. I try to stop myself from apologizing for him sometimes when he has particularly bad classes, and in the grand scheme of things, this wasn't too bad. He even earned a stripe for his blocks.

I have the same moments at school, although thankfully this year has started off great, and his teacher is very encouraging. And we had a great playdate on Sunday, which was so nice to see.

But there are other times when you can look at Mister Man and just see that he's off and that he's different from other kids. There are times where he just doesn't know where the line is and does something that he doesn't realize is inappropriate. When he gets excited, he jumps in place and sometimes grabs himself - something no one else we know does. When he talks to you, he doesn't look you in the eyes, and he sometimes wanders off while still talking.

I know that there are times when the parents look at him and wonder. I worry that what he does will discourage his classmates from wanting to be friends with him. I fear that their parents won't want to have playdates with him and that the birthday invitations will fall away to nothing.

Mister Man is autistic. He's very high functioning, and there are times you'd never know - but those are only times. There is no cure for autism, but we do what we can to support him - in fact, I leave the house in twenty minutes to pick him up from school to take him to a speech and language group - and our therapies help, but he will always be different.

His teachers all know. They've seen the copies of the reports from the pediatric neurologist and the occupational and behavioral therapists. We've discussed recommendations to make the classroom an easier place for him - long after we've debated what school is most appropriate for him and where he'll thrive.

Telling the other parents is something I've hesitated over. I worry that there are parents who will judge him for his autism and see that first and foremost rather than the sweet boy who lives beneath. I worry that revealing a diagnosis like this will scare them, that ignorance and fear will drive them away from not only Mister Man but from me. I worry that the diagnosis will mean they won't trust Mister Man around their children because of what they've heard elsewhere.

But at the same time, ignorance is one of the biggest problems. If people could see and know Mister Man first and simply recognize that his autism is a part of him like his thick hair or his hazel eyes, that it provides challenges to him for everything from sports to social situations but that we work through them, maybe just maybe they will accept him and help their children accept him. And maybe they'll accept another child they wouldn't have otherwise.

So slowly, one by one as I see the moms in a setting where we are discussing our children already, I am mentioning the autism to the moms. I explain that he is a high functioning autistic boy and that there are things that are hard for him, things that make him different. I explain how hard social situations are for him but how much he wants to have friends.

Interestingly, most of the time, I've gotten a surprised reaction. Apparently the parents haven't noticed how different he is, and they just see him as a sweet child. Maybe I'm hypersensitive to all the differences, constantly comparing him to the other children around him to see what they're doing and what he's doing and how closely he matches up.

Maybe in tomorrow's Tae Kwon Do class, I need to watch him and revel in the fact that he loves to be there. I need to focus on the fact that he learned his elbow series and memorized it after two classes. I need to look at the other children who are goofing off and not earning any stripes because they can't remember the moves and realize that Mister Man is making great strides and that no child is perfect.

And so tomorrow, I plan to walk in with my head held high and a smile on my face as I watch Mister Man work through his skills and try to earn a stripe for his kicks.

This post was inspired by the book "Cowboy & Wills" by Monica Holloway, the selection for the Left To Write book club. I received a copy of this book to write the post, which is not a review (go read the book though - I cried but I loved it!) but instead inspired a post. There is no compensation involved.


JennieB September 1, 2010 at 1:09 PM  

It is always eye opening to read posts from moms with kids of older kids with autism. My son is 3, so he still has so much growing to do. But it amazes me to think about him even participating in a Tae Kwon Do class, however awkward or different he may be.

Good luck with all those stripes Mr. Man!

Tracey - Just Another Mommy Blog September 1, 2010 at 2:27 PM  

Justin did the jump and crotch grab in kindergarten/first grade. Second grade was a vocal tick. Third grade was a hair twirling tick (made a bald spot). Fourth grade was an issue with voice control and the reappearance of other physical ticks. We pulled him out to homeschool in 4th and the ticks slowly went away. He acquired a new, very disturbing head-bob tick in 5th that went away after a few months.

I understand about kids that do things that other parents don't get. Autism and other high-functioning disorders are hard for the world to understand...

Sky Princess September 1, 2010 at 4:27 PM  

I think it is important to share with other parents your child's special needs. I would be more likely to encourage my child to play with another that has autism than I would for the kid that I think is acting funny. The unknown is scarier than the known.

Tara R. September 1, 2010 at 4:33 PM  

I worry about telling my son's friends' parents about his 'difficulties.' His friends know he's different, but I don't know how these adults will react and in turn perhaps turn these friends against him. The stigma is mental/neurological disorders is still very strong. Kids can be great, it's the closed minded parents that scare me.

Emily September 1, 2010 at 5:04 PM  

Wow, so did it bother you when Holloway resisted telling other parents at Wills's school about his diagnosis? Or did you understand why she did it?

By the way, I found Mister Man utterly charming when I met him. ;)

Lisa September 2, 2010 at 10:07 AM  

Although I can't say I truly know what it is like to have a child with Autism, I know the feeling of needing to apologize for your child only to have people be surprised by my need. I have 2 boys Dx'd with ADHD. But as in everything there are blessings mixed with the struggles.
But I really never imagined how hard it would be to be a parent. There are days that they clearly make every minute feel like a struggle but there are so many other things to that I never expected. So much worry about them fitting in and making friends, being seen positively by parents and teachers. I feel like I'm always fighting with something or someone. This weeks fight is to get our school to do what they need to do be meeting his abilities. The upside of him going 100 miles an hour all the time is that he is SUPER smart. But the school isn't stepping up to meet that need for him.

April September 2, 2010 at 10:51 AM  

I think you're handling it just right; you're not lying to people, but you don't have to put a red "A" on him, either. Your post reminded me a lot of the book. You're taking it one day, one Tae Kwon Do class at a time.

Emiy September 2, 2010 at 11:06 AM  

Beautiful post. My son has anxiety and Tourette's and possible OCD. When I've talked to parents about him they always say they've never even noticed!

I have decided to concentrate and nourish my son's gifts, the things he does excel in rather than what might be coming for him down the road.

Linsey K / Me Too You / From Left to Write September 2, 2010 at 2:58 PM  

Ignorance IS the biggest problem. Good for you for doing some education for yourself and others.

Monica Holloway September 2, 2010 at 6:19 PM  

Michelle - WONDERFUL FOR YOU! Walking in with your head up and opening up to the other parents. It's so good that you are able to do this NOW.
I just wrote on Emily's Post about this. I did not have this confidence until Wills was older. I had to work through my own fears and, quite frankly, shame about what others might think of Wills's diagnosis. I hadn't gotten to the "educate these people" place yet in those days. And I wrote the book exactly how I reacted - THEN. Now, I can talk to anyone about Wills's autism and so can he. This is one of the reasons I wrote the book. To open up about what it was like early on. I just think you're a HUGE inspiration.
In most of my readings and events, this is a prominent topic, and my greatest hope is that parents learn from what I was unable to do. There is no shame in autism AT ALL. I needed to let go of my fear and anxiety surrounding it.
Congratulations to you!! Big Smile over here!

Michelle September 2, 2010 at 7:48 PM  

JennieB - At 3, I didn't think my son would participate in something like that either. As he turned 3, we heard from his preschool teachers that he'd participate in circle time - sorta - but that the rest of the time, he wandered around the edge of the classroom knocking things off shelves. It's AMAZING how far he's come.

Tracey - Hmm, and here I was hoping we could break him of it somehow, someday and be done. Ha! This is one he's done since he was a toddler though. Those high functioning disorders are REALLY hard to understand, but then I see them all the time in adults (or my view of them anyway) around, which gives me faith that he'll find a happy place as he gets older.

Sky Princess - You would, but ... I know many others wouldn't. But shame on them for backing off - except that if and when it hurts my child that they do so, that's where I'm stuck.

Tara - Absolutely. And around here where no one is average (ha), there are a lot of close-minded parents - see my post on the PTO president who didn't want anyone to know about her own son.

Emily - So glad you found him charming. He generally does great around adults. And I do understand why she did it. It's a really hard line to walk, but ... we're in a private mainstream school and some of the parents need to know.

Lisa - That super smart thing? That's EXACTLY why we're in private school. The public schools couldn't start to do anything for that side of him (see the post linked above on our fork in the road) until 3rd grade. I couldn't have him branded as a bad kid because he was bored.

April - But is it really a red "A" - that I think is really the bigger question. And trust me, the book reminded me a lot of my life!

Emiy - Concentrating on what he does well is exactly the right tack, I think. There are so many things he - and others - does well that go unnoticed and ignored too often.

Monica - That was the sense I wanted after reading the book. What is your NOW like. I am lucky that our special needs preschool presented me with some GREAT moms who knew so much more than I did and welcomed me with open arms to help me move forward and navigate the system and figure out what to do next. And of course to be my sounding board when I needed it. Without them, I would NOT be where I am today.

Hyacynth September 3, 2010 at 8:24 AM  

Michelle, I know it must be hard to watch MM and see the differences between him and other children. But as a friend who has met MM in person and spent some time with you guys in a very social setting, can I assure you that these differences are actually most apparent to you? Knowing that MM had autism before I met him, didn't automatically make me distrust him with being around my oldest.

In fact, I DID see that he is a very thoughtful, sweet boy. Knowing he has autism can help explain some of his choices in the social situation, but it didn't {and I'm sure it won't} overshadow his friendly personality and apparent intelligence.


Lisa Hanneman September 3, 2010 at 11:00 AM  

Every parent watches their children, wondering if they're fitting in, comparing their actions to the kids around them, concerned that other parents may be judging... We're all looking for signs of something. I'm sure that the parents were paying more attention to their own children's "quirks" (they all have them) than to your son. We're all consumed with our children, right?

I hope you continue to walk with your head held high!

Michelle September 3, 2010 at 2:31 PM  

Hyacynth - Awww, thank you. But again I will say that it is different with adults than children. But I'm happy to hear that you see the child he is rather than just a diagnosis.

Lisa - You are probably so right. It's just hard when I know there *are* things that are difference that are so easy for me to fix ... if only I could. But I'm not the only one, am I?

Pat September 4, 2010 at 2:40 PM  

I love how totally supportive you are of your son, Michelle. You are providing him with the opportunity to learn Tae Kwon Do and taking him to the speech and language group...and just generally always being there for him, through all his ups and downs. Before Aspergers Syndrome was defined, people just accepted those with it as eccentric. Now interventions and work on socialization greatly improves the lives of people with AS. I'm sure your son will do just fine in life, thanks to all the support and patience you have for him.

septembermom September 6, 2010 at 6:05 PM  

You're such a supportive and loving mom. I think that it's a good idea to be up front with moms that you'll see on a regular basis. Providing the right information and perspective can really keep people from quick judgments or misconceptions. Congrats to your handsome boy and all his achievements!

septembermom September 6, 2010 at 6:05 PM  

You're such a supportive and loving mom. I think that it's a good idea to be up front with moms that you'll see on a regular basis. Providing the right information and perspective can really keep people from quick judgments or misconceptions. Congrats to your handsome boy and all his achievements!

Michelle September 6, 2010 at 8:55 PM  

Pat - It is soooo true. I look around at some adults I know, and I KNOW they have Aspergers or something similar... and it gives me such great hope for Mister Man that he can find happiness and a place in this world as he grows. And hopefully some of what I do will make it a little easier for him, too.

Kelly - Again, assuming it's the right kind of mom. Some will just to a quick judgement or misconception based on the diagnosis. But here's hoping fewer and fewer will.

Heather September 21, 2010 at 10:56 AM  

This post hit me dead-on: Not only is my older son's nickname "Mister Man", not only does he also have high-functioning autism (as well as ADHD and anxiety issues), but I constantly struggle with the question of whether to disclose his conditions, to whom, and when. I, too, have watched him doing his own (totally different) thing while participating in group activities. It made me want to A) Hide under the bleachers until it was over, B) Pull him aside and try to get him back on track, C) Proclaim loudly to everyone around us, "There's a reason for this! He's not strange or unruly! He has legitimate conditions!" and D) Leave. All at the same time.

It's so hard to find that balance. You want people to see your child for all the wonderful things he is and can do, not for his condition; on the other hand, not disclosing the condition(s) lets people fill in the blanks themselves--which usually means they assume your child is being raised by wolves, has no discipline, etc.

My Mister Man is 11 1/2, and I'm still trying to find that balance. In fact, it was only recently that I sat down and explained to him that he had a form of autism. It was something that had never occurred to him. His reaction was one of horror; he cried, "But I don't want to have autism--it makes me different!" It was one of the most heartbreaking moments I've ever had as a parent.

Michelle October 1, 2010 at 8:07 PM  

Heather - It sounds like we are two birds of a feather. I wish that someday we could get to a place where we've found that balance, but we aren't there yet. On the plus side, he got that he was different AND cared that he was?...

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