Saturday, May 24, 2008

struggling in uncharted waters

As I travel down my given road as a Mom to a child with Asperger's syndrome, I'm constantly learning, constantly trying to teachers would say, "monitor and adjust". I find, through talking to other moms of kids on the spectrum, that every child is affected so differently. Therefore, the moms are affected very differently as well, in some ways. There's certainly no guidebook on "How to Handle Your ASD Child", that's for sure. If you find one, buy it for me and I'll pay you back, ok?

I wish almost daily that somehow I could just open up Big A's brain and look inside. But if I did that, I'd also need to somehow understand what I was seeing, and be able to think and feel things the way he does in order to truly know where he's coming from. Since surgery has not yet progressed to that point, obviously (LOL), I make do with a precarious balance of 1) trying to parent the way most "regular" moms would and 2) trying to be insightful and respectful of how he must feel and the ways in which he needs to be treated differently. Saying that it's rough sometimes is the understatement of the year.

This morning, we had one of those rough patches. Tball has been, for A, such a success and good experience so far this season (little E is a different story for another day.......). But this morning, something happened which I really, really hope will not spoil the rest of the season for him. With 2 children on the team, I obviously can't watch both of them at every moment. DH and I happened to both be looking at E when we suddenly noticed A and the coach walking toward the bench from the outfield, and A was crying. The coach was saying, "he's ok, there's no blood" so we ran over to find out what happened. A was able to tell us that his teeth hurt, and that he'd run into a girl on the team as they both went for a ground ball. He was crying pretty hard, in his usual frantic, hyperventilating sort of way. A seemed so worried about his teeth, saying they really hurt, but I checked and they were not loose or out of place at all. We went to an unused Tball field nearby, and hugged and talked to him, trying to calm him down.

The problem is this: he gets so very upset, and is virtually unable to calm himself down. He enjoys Tball, and I know he wants to play, but he got so scared by this incident that he just couldn't shake it. With a typical kid, you might use the "shake it off, you're ok" approach and hurry them back out there to the field. I know that NT kids sometimes take their cues from how Mom reacts.....if they see you upset or worried, they follow suit, and vice versa. But A is too cerebral, too sensitive, too "deep". I don't know how to describe it, but those tactics just don't work with him.

I tried a rational argument approach, explaining how what happened was just a freak accident and wouldn't happen again so he did not need to be afraid to get back out there. Nada, just started him crying even more. I tried the old analogy about "get back up on that horse", but again, he just cried harder. I know that, no matter how I try, I literally cannot understand what he thinks and how he feels. And I try desperately to never belittle his feelings, but to respect them and allow him the time and space to do what he needs to do. He was just very, very scared of it happening again if he went back out there to play again.

But this is the world of American sports culture, obviously, and he's on a team of 90% boys and he's the biggest and oldest one of them. I'm sure it does wonders for his social standing among them when he goes into hysterical, fearful crying over something that most of them think is "nothing". The feelings and the fears are very real to him, I at least understand that much. But it seemed like no matter what approach I took, it made things worse. The only thing that helped was just letting him lay down on some unused bleachers and cry until he was ready to stop.

Hugging him and sitting him in my lap for cuddling.....nope, he arched his back and cried more. And he's so big and strong, I was afraid I'd drop him. Using the "your team needs you, you're a good helper because you're the oldest, etc" tactic went nowhere.....he just pointed out who else on the team is 6 and could be that helper. And the coaches seem baffled and perplexed too, and I don't know what to do about it. This isn't the first time he's had a meltdown in Tball this year, this was just the worst one. When it happens, the coaches (who are nice people, don't get me wrong) seem so taken aback by it, like they don't know how to react. They'll just come over to us and ask if he's ok, try to either tell him "you're ok buddy" or joke around with him, neither of which works. I'll say something vague and stupid like "he just gets upset easily" or whatever, but I think we're going to need a better explanation, effective NOW. Wish I had the coaches' email address, because discussing the ASD with them in person won't be fun. Plus, I always fear about unintended repercussions that might come after I never know who might feel like he doesn't belong on this team or in this league, or want to treat him differently in ways that neither he nor I wants. But you know they've got to be thinking "WTF is going on with this big 6 year old boy and the crying?"

This whole post has been one big disjointed ramble, and I'm sorry if it made no sense. Thanks for staying with me, if you made it this far. Lord, I just wish I knew the right way to react to A when he gets this upset. I worry that if I let him just sit out the remainder of the game, which is what we did today, then he's missing out on the lesson of getting back up on that horse, bouncing back after a stumble, etc. But there's always that wall, for lack of a better word, between his true feelings and true motivations and my understanding of them (or lack). I want to validate him, allow him to self-soothe, and I'll just have to hope I've made the right choice. Now, let's just hope that Thursday night's Tball practice goes better, or that he's even willing to get back out there ever again.


tafkalorelei said...

Just wanted to give you ((((Hugs)))).

~Denise~ said...

Hoping a survival book comes soon. You are truly an inspiration as a mother, you are doing so much to help him be the best person he can be.


mysh said...

This is just one of the many examples you post that I sit back and think "What a great mom". Mr A (and Mr E!) are so lucky to have you.

lyndsey said...

((((((hugs))))) I know it is so hard. I would say something to the coaches in whatever way you are able. Do you have a phone number? Maybe that way you could call and say it without having to do it face to face. And just explain it to them the same way you just did. You don't necessarily want him to be treated different, you just want them to understand why he is the way he is. I think as long as you make it clear that you aren't asking for special treatment, no one should have a problem with A being on the team. ((((hugs))))