We are trying gymnastics again with Henry, and he is like a totally different kid this time. The first class was Wednesday. He was excited about it for days and when the time finally came, he ran right out onto his felt square and started stretching, side-to-side, looking back over his shoulder at me and grinning.
The other three boys in Henry's class are all autistic also. But more autistic. They are all bigger than Henry, but I am guessing they are younger than him. Two of them had aides who assisted and tried to direct them through the activities. One boy in particular kept making a break for the trampoline. He was so big and strong that his skinny young aide was really little help in corralling him. At one point he hurled himself over the three-foot wall that divides the viewing area from the classroom, grabbed his sander (like from a toy workbench), and tossed it back over the wall. All the while his aide and his mom were saying "the sander can't go in, the sander needs to stay out here."
One mom went up to the other and asked if her son had attended such-and-such preschool. He had, and they remembered one another, and started catching up. They talked about trying to potty train their sons, and how they had pets that their sons were interested in at first, but now didn't look twice at, about different classrooms they had tried and how discouraging it was to have your son be the "lowest functioning" in the class- to get reports that he didn't participate in circle time that day. They both agreed that they didn't know whether to describe their sons as verbal or non-verbal, because they said some words, but not spontaneously. They talked about how very very hard it is, and how no one understands.
I sat across the aisle from them and listened and felt a cold sinking feeling. "I understand!" I wanted to shout. But the sinking feeling came from the realization that I don't actually understand this autism.
I've dipped my toes there- when Henry was 3, 4, 5. When he screamed at everything and scratched and pinched. When all his teachers could report was "Henry had another rough day today." But we're not in that place anymore. And these women still are, and may not ever move far out of it.
I felt very humbled. I thought about all the things I've written here about not wanting to change my son, how his autism makes him what he is. And I realized that there is a difference. A real difference between this autism and that autism, between the challenges my child presents and is presented with, and those closer to the other end of the spectrum.
As I buckled my 2 boys into the car to head home, and they chattered about what a great job Henry did at gymnastics class, I watched one mom and her aide work together to get their big boy into the car. He must have thrown himself to the ground, because I saw one grab his feet, the other under his arms, and somehow heave his 80-lb body into the car.
We're all in this together, and maybe I could offer something to those other moms. But saying I'm in the same boat with them seems kind of like declaring myself a cancer survivor because I had a spot of skin cancer removed from my shoulder 10 years ago.
Subscribe to:
Post Comments (Atom)
13 comments:
We all have different kids with different "autisms". I wonder sometimes how surprised you or some of the other blogging friends may be to meet Roo in person one day. I think that since I try to focus on the positive most times in what I write, I leave out a lot of the negatives. I think of Roo as verbal because I know what he is capable of saying (with and without prompts), but if we are out in the "real world" he appears very much non-verbal. He most likely appears to be "low functioning" to many people, whereas people who know him (like his aide) will comment to me how "high functioning" he is.
But you are right. You have a child who is not "very autistic", but nobody knows what it is like to walk in your shoes either. The fact that you can look at those other woman and realize that what you are dealing with is different, means that "you do understand" and you have a lot to offer them. I know that you have had so much to offer me over these past couple of years. And I thank you for that.
I agree wholeheartedly with what Mamroo said.
Yes, we might not be able to relate to some of the challenges that those mothers were discussing. But, we also share some similarities AND have challenges that they probably don't face.
The public eye has begun to gain understanding and acceptance of persons who are more severely affected: those individuals who might stim by waving their hands, have little to no verbal speech but can communicate with a keyboard, must wear headphones in a crowd, become overstimulated and self-injure.
But, how does the public react (and judge) about the "normal looking" kid who just might:
*have a meltdown in the grocery store over a laundry detergent bottle (or Disney papers)
*need to read a license plate in the parking lot before entering a store
*say the same line from his favorite movie over and over again
*seem to have temper tantrums that shouldn't occur at his chronological age
*run out of the house and wander down the street because he doesn't have an understanding of fear
*hug strangers simply because they have long hair
*talk about nothing but one particular subject, regardless of what you say back to him
*make you listen to the same song over and over again in the car for a month
*hit his friends at school because he got over-stimulated by the fun in gym class an hour ago
*insist on a grilled cheese for lunch and nothing else will do.
All of these faces are autism, too.
And, I like to think that we're all in this together.
Wow, this is such an interesting post. And you're right, we're all in it together though we're all experiencing it differently. India's "troubles" are minor in comparison to kids with more severe forms of the disorder but it is autism nonetheless. It's a strange sensation really and sometimes I'm not quite sure how to talk about her. It's a little bit like limbo where she's too much of this and not enough of that. (I hope that made sense)
Sal.
Yes, I agree with Mama and Melissa. Every kid with autism is so different. I struggle with the public comments and looks and I may not always, but I do now.
Oh Gretchen, this is such a thought-provoking post. The kind of post that drew me to blogging and this cyber-support-community in the first place.
I relate so much to what you've written here and strongly agree with the comments. To me, it speaks so eloquently to the problem with labels in general and the fact that all our kids are different, with unique challenges and yet, still, so much overlap.
I am willing to bet you'll find a way to connect with those other moms as time goes on. If you are anything in real life like your persona here, you'll find a way to bridge the gap and perhaps together you will all find comfort in each other.
Thank you for this...
Sal-
I thought of India quite a bit that night, because at the very beginning of class the teacher pulled me aside and suggested that Henry might be better off in a different class (with "regular" kids.) By the end of class, she wasn't quite so sure. It seems that my choices are to have him be the highest functioning kid in this class or the weird kid in the regular class. He doesn't quite fit in either place...
Gretchen, you do understand. Charlie is more like one of those boys---and much like Henry, too.
Gretchen, what a powerful post. I think so many others have said it as well —none of us faces the exact same challenges with our children. Yet, we all have so much to teach and learn from each other. I think the fact that you could recognize the difference speaks volumes about your compassion for the other mothers. And the fact that you came home and thought about how or if you could help them in some way when you could just as easily said "Whew! Thank you, God!" and called it a day.
The dilemma of placement is the very thing we have wrestled with for Nik as we look at the coming school year. We went with the
"weird kid in the regular class" simply b/c we already had evidence that Nik had made progress there. The teacher is important, too. Knowing that she loves my son dearly and *knows* there is a key (somewhere) to "unlock" him, gives me such reassurance.
Wow Gretchen, yet another excellent and thought provoking post! I often think about how I wouldn't want Griffin to change in any way because he is who he is but one day that may change and I might wish his autism to go away. I totally understand what you have mentioned about "this autism" and "that autism" because I do have friends who have children who are non-verbal and are lower functioning and I cannot put myself and Griffin into the same category either since he is so high functioning.
I am thrilled that I have been able to read your blog and actually type out a comment! Don't know if you have read my blog but I have been having some major problems with my eyes which has kept me from spending much time at the computer thus not being able to keep up with the blogs but.......here I am again! It is so nice to catch up and see what you all are doing these days.
Big Hugs to you all from us!!!!!!!
This so totally describes the isolation I am feeling here. JP is doing amazing and I am truly thankful. But as we are entering a mainstream Kindergarten class I am finding that all of our autism peers are going into smaller self contained classrooms. Of course, I firmly believe we need to do what is right for each child. I am comfortable with our choice for JP. I understand their choices.
However, I have not found any families that are sharing our experience. JP had a couple Asperger boys in his gymnastics class. What I have found is that although our kids look very similar today, they were very different 2 years ago. Two years ago we were elbow deep in autism. Two years ago these parents still thought their child was developmentally on track.
Their sense of urgency is different than mine. Where I see issues I need to help JP understand, they see a quirky issues their child will probably outgrow. When I talk about what supports they are getting they look at me like I sprouted a third eye. When I talked about therapies they assumed that I was talking about hyperactivity / anxiety meds. We just aren't on the same page either.
I guess my point is that this spectrum is confusing no matter where your child is on it!
I so understand where you (and your previous commenters) are coming from. Sweet Boy is also in that "limbo" area. Months after deciding to go with "the weird kid in a regular class" placement (albeit expensive private school where the numbers are better) I'm still agonizing over whether we made the right decision to try without a shadow.
Thanks for such a thought-provoking post.
I've been thinking about this off and on since I read it yesterday. It actually dovetails with a post of my own that I've been pushing around in my brain since mid-vacation. I don't have any real thoughts to share just yet -- except to say that this was a great post.
I can relate to what you said. But....the minute I start thinking Gabe is different (because he is PDD-NOS) is when I open my eyes more and are able to "see" Gabe in many other children with Autism scattered all over the Spectrum.
Kristin
I remember wishing Gabe could eat pizza and meat loaf like the other child in his class could that had Autism, but was non verbal.
Post a Comment