It had been a difficult decision as to whether to go; it was being held at the Big Gym, which has always been a rough place for N; he loves it, he hates it, he wants to be there, he can't be there. And to make it worse, there wouldn't be a single other child, aside from Weeyum, whom N would know.
Weeyum's mom--my lovely friend J--suggested that, if N or I would prefer, we could do a special day with the boys another time, instead of putting him through this sort of potentially upsetting social scene. But N had seen the invitation, and he was dead set on going. So we went.
It was--if you use a neurotypical measuring stick--a complete disaster. N refused to take his socks off, refused to even enter the room where the other kids were playing. When they left the gym and went into the party room to have pizza and cake, N grabbed the chair right next to Weeyum, but soon abandoned it to come sit on my lap, insisting on having my hands over his ears while the rest of the kids sang happy birthday, refusing to eat any ice-cream cake, refusing to be in the group photos.
During the time the kids were in the gym, N wandered around the lobby, watching the others through the large windows, eventually talking to one of the mothers, one I didn't know, hadn't met. He was flirting with her, actually, as is his wont--chattering away, asking her to play with him. I had moved into the party room to help J set out plates and such, and also (no need to pretend otherwise) because I was embarrassed by N, by the way he was acting, by the way he was standing out. I was embarrassed because of what I assumed the other mothers were thinking about him. (I'm not even going to link here. If you've been around the special needs/autism blogosphere this past week you know why that was on my mind, why I was thinking about the other mothers' judgements of my son.)
And I was even more embarrassed by myself, by my embarrassment. (What kind of mother...I berated myself. Really, the only one behaving badly here was me.)
After I while, I noticed that this same mom was still interacting with N, handling him just fine, never once looking to me for help or intervention. At one point I saw J go over to N, trying to get him to join the group, and this mom just looked at her and smiled. "He's scared to take his socks off," she said. "He's fine here."
After the gym party was over, we moved to a nearby park to open presents. Again, N refused to join in with the other children, seeking the same mom out, asking if she would play ball with him. I was talking with another parent, watching; I saw her say a few words to her older son, a boy around N's age, then open a juice box for her younger, who was probably around five. Done, she let N spirit her away to play some game of his devising, with elaborate rules only he could possibly understand. But she never seemed rattled or upset, never sought my eyes, never seemed to want or need rescuing. So I stayed where I was, and turned my attention to the other kids.
And that's when I saw him. This other mother's older son, not too far off from the group of yelling, tumbling kids, but not part of it, either. Walking in circles around a tree; talking to himself; making spaceship sounds; gesturing with his fingers; entirely in his own world; absolutely happy.
I sidled up next to J, who was setting out some snacks. "That boy, M," I said gesturing to him with my chin. "He's one of N's people, right?"
J looked confused for a second, then realized what I meant. "Yes," she said. "Yes, he is. How did you know?"
I didn't answer, just watched him, watched J watch him, watched her see what I was seeing.
"I didn't see it until just now," I admitted. "At the gym, I couldn't have picked him out at all."
"That's his safe place," J said. "He goes to classes there all the time."
I turned to look at N and the other mom, still throwing the ball back and forth. "No wonder," I said, more to myself than to J. "No wonder she's handling him so well, so easily."
* * * * * * *
It's Autism Awareness Day today.
This last week has been one very long spate of awareness. In addition to the party, there was the Mother-Son Olympics at N's school, where he participated in most of the events, including the 'ski jump' (a leap onto a gym mat after running along a picnic-table bench). He went far on the jump, earning our team a bunch of points, and our teammates cheered him, loudly, when he landed. At which point he looked up, startled, burst into tears, shrieked loudly, and ran behind me to put his head under my coat. (That's him, after he'd recovered himself, in the photo up top.)
And then there was the Passover seder at our house on Monday, where N greeted my friend and work colleague, K--with whom he is unabashedly in love--by telling her "your hair looks weird" and refusing to offer any more of a greeting, then proceeded to completely lose his ability to deal, shrieking and wailing, when his friend C erased something he'd drawn on the whiteboard in our kitchen.
Oh yeah. I'm aware.
I'm aware of the ways in which N's place on the autism spectrum marks him as different, and the challenges that brings. I'm aware--once I've had a few days to regroup, at least--that there are and always will be good days and bad, and that that's par for the course with any kid. I'm aware that my son is special, but also that he's no more or less special than his sister. That he has special needs, needs special handling, but that the needing and the needing to be handled are themselves no different than with any child. It's just a little more challenging to meet those needs, is all. And sometimes it feels more fraught.
I'm also aware that N's interactions with the world mean that people will judge him for his differences. Sometimes, they will no doubt judge him harshly; this is, after all, a kid whose autism doesn't really look like autism, but often like shyness, rudeness, brattiness. He doesn't flap or toe-walk. His speech isn't obviously scripted or repetitive. His gross motor skills are fine--in some areas, they're even remarkable. Even parents who know what autism looks like might not always recognize N. (Though this weekend? You couldn't miss him.)
But I'm also aware that sometimes these people are not judging harshly. As I learned from the other mother at Weeyum's party, sometimes they understand, even if it doesn't seem like they possibly could. It may be because someone they love is "one of N's people," or it may be because they have a good and open heart.
Or it may just be because they are aware.
14 comments:
Maybe some parents think every kid is one of "their people?" In a good way?
Lovely post. I'm in love with the other mother.
I've noticed there seems to be an other mother just when we need her. I'm glad you found yours, that day.
There is so much awareness about autism now that I think most people, if they have more than one weird interaction with N, will be able to figure it out.
Also, there's absolutely nothing for you to be embarrassed about. It's 100% clear to me you didn't slack in your parental duties. You didn't do or not do anything to cause N to have autism. This is just how he came out.
Surely you taught him manners just as much as you taught Em, and she simply is able to absorb and act on them more easily than N is.
You have nothing to be embarrassed about. It's not a "fault" issue.
Thanks, Green, for your always-there support.
Would that it were true, though, that anything near a majority of people were truly aware. I'd need a book to tell you about the people who've showed me, by word or deed, that that's simply not true, that there's still a lot of prejudice and fear and misinformation. And there was a huge brouhaha just this past couple of weeks (the best roundup is here, http://www.squidalicious.com/2010/03/susan-senator-interview-smockityfrocks.html, which includes a link to the original post) that showed us that any thoughts we had that it was a done deal, this awareness thing, were way premature.
Finally, what I was embarrassed about was the fact that I'm embarrassed by/of my son sometimes, when I should be the one who stand up for him. It's small, and it's wrong. Plus--and this I didn't make clear enough in my entry--I felt in many ways as if it was my pushing him to not 'look' so different that was creating most of the issues we dealt with. Had I just left him alone, let him do what he wanted to do (and not do what he didn't want to do), he's have probably had a great time that day. As it was, there were word between us, a lot of me pushing him to take his socks off, even pulling them off his feet at one point, creating a lot of discomfort in him.
It's hard, sometimes, to find the happy medium between pushing gently and being pushy.
But, again, I really appreciate your having my back the way you. I appreciate it from all of you, in fact.
"Had I just left him alone, let him do what he wanted to do (and not do what he didn't want to do), he's have probably had a great time that day."
I do this, too, with my neurotypical kids, and then I feel bad about it. It's so easy for moms to see our children as extensions of ourselves, rather than their own people, and that's true even when they are not autistic. Even when they don't have that particular difference, they're still different.
I just wanted to thank you for this post.
I had a recent discussion with another parent about how much to share with other people when our children have special needs that might make them either appear different, or appear poorly behaved.
I don't think we came to a good resolution and it is something I still struggle with.
I have never commented before but I have picked this blog to leave my confession.
My son doesn't have autism. He has about 5 other things that leave him just as confusing to people but with no easy way to explain it.
My confession is that lately - I feel so jealous of the autism Moms. You have groups, you have books to read, you have foundations, you have research, you have celebrities, you have one word to explain why your child is weird.
My son is weird. Some days worse than others but the fact is - he is weird. And there is no group for me to join, no book or blogs for me to read, no simple way to explain to anyone. He has 5 diagnosis and one of them has the word psychotic in it. Where is the walkathon for psychotic kids? I feel so alone some days and I am jealous of this socially acceptable explanation of autism. And I am ashamed of that.
Anonymous, for what it's worth, I know exactly how you feel. It was only recently, after more than seven years of hearing what N *isn't* rather than what he is, that we finally got someone to really see how he fits on the autism spectrum. I have ohsomany times felt like an outcast or a fraud when talking to other "autism moms" for exactly the reason you talk about. Because my kid didn't have the label, I felt like I had no right to join in the conversation.
But here's where the "acceptance" thing comes in: Even when I felt like I had no right to be part of this group of special needs moms, the group welcomed me with open arms. It was ME that kept me on the perimeter for so long, not THEM.
Does your son struggle in social situations? Is he supersensitive to noise or other sensory input? Does he obsess over certain subjects or objects? Tantrum for seemingly minor reasons? Have difficulty in a school environment? Need an IEP? "We" have experience in all of these. Take the word "autism" out of our conversations, and input any word you like--I bet the advice that we're giving and getting from one another would be at least sometimes useful to you (as would at least some of the books, especially those that talk about strategies to reach kids with special needs).
TC - Thanks. Really. Wise words.
I followed your links and am shocked, absolutely SHOCKED that a real teacher would not have recognized autistic traits in a child. It's not like this is 1973 and nobody is autistic.
BTW, I think you can be embarrassed by some of N's actions and stand up for him. It's not one or the other.
Did you make a mistake in taking his socks off when he didn't want to? Sure. You won't do it again. Next party, you'll let him find his own comfort level.
I have stated to comment several times on this and your previous post, but couldn't find the right words. It is difficult with typical children to know how to react to certain behaviors, but is much more challenging when a child is on the spectrum or has other concerns. It is difficult not to be embarassed when our kids act in ways that don't fit the norm and it is not always easy for many of us to know when to be accepting or when to try to get them to change. There is no right answer.
At to your previous post, even knowing the diagnosis was coming, even knowing it is good to have an answer, it extinguishes the hope that you were wrong and he is just fine.
One thing I have wondered, especially reading this post, is how much anxiety is contributing to his challenges. Is it possible that anxiety, and not autism, is the major issue or are these inter-connected? I have seen kids make great strides once their anxiety was under control.
As always, I appreciate your sharing.
PS Re-reading my post, it may have come off as questioning the diagnosis, which was not my intent. Just wondering the degree to which anxiety makes all those challenges feel so much harder for N to deal with. I hope that makes sense. M
Meg, it makes absolute sense. And it's very true...the anxiety permeates everything. In fact, the psychiatrist's diagnosis is PDD *and* GAD (generalized anxiety disorder). There's no ignoring the anxiety with this kid.
The difference from a 'regular' GAD diagnosis is that it's thought that the anxiety is a consequence of his autism "wiring." Ultimately, it may be necessary to treat the anxiety medically, but for the moment, the psychiatrist thought it would be smarter and less intrusive to see if the anxiety decreases once the PDD is being adequately addressed. If it does not--if it turns out the anxiety STOPS the PDD from being adequately addressed--then we'll launch a fuller assault on the anxiety itself.
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