Sunday, January 18, 2009

Hey Shorty, Hey Fatty - Continued

Silk left the following response to my very long "Shorty, Fatty" post, and I was going to respond in the comment section. But my response got kinda long, so I decided to give it its own post..

Silk wrote:
And that is why I home educate. I cannot stand the thought of my aspie getting tortured by those who discover how sensitive he is, even his friends. And why do teachers get to decide that Shorty isn't an insult, but Fatty is? It would piss me off. Your creative solution would have never occurred to me. And the puberty thing coming up, I don't even want to think about it. Hormonal changes and communal showers are often traumatizing for N.T. kids well into adulthood, I would insist on lack of communal showers in my son's IEP or 504 in the same way that he gets one on one testing for state standards instead of the sensory overload of group testing. Of course he may not have either of those tools by then, but public school social policy sucks.

Silk, you are a stronger person than I am. I thought about home education, especially during the, socially very difficult, 2nd, 3rd and even first 2/3rds of 4th grade. But I know myself, I know my limits. I can do a lot, I can handle a lot, I can teach and model a lot on the social, how to get along, how to play, how society-at-large works front. But I am NOT cut out for imparting academic skills. I learned THAT during homework times with Salamander...

Have I thought about enrolling him in a school more geared towards his particular complex of needs, so that he'd be amongst similarly inclined kids, with staff more sensitized to these kind of issues? Absolutely. But these schools I cannot afford on my own, I'd have to fight for an outplacement. Plus enrolling Salamander in a 'special' school would go against what I have always wanted for him, what HE wants for himself. And that is to be amongst the 'regular' kids, to be part of larger society, to NOT be kept separate.

It's a tough balance and a tough battle.

I can tell you that even as recent as a year ago, the conversation between Salamander and I would have gotten stuck at the "But it's mean, mommy. So because he's mean, I am mean back and call him Fatty" point. And no matter what I would have said, how I would have said it, the conversation would have circled around this.. again, and again, and again, and again, until we either both ended up in tears or screaming at each other.

The really sad part of the whole situation is that T is a fellow spectrum inhabitant. And it makes me profoundly sad to see these situations occur between T and Salamander (what I relayed is just one example). If anything, these two souls should have found common ground, should have a unspoken understanding for each other... But it shows you that, once again, kids are kids, regardless of what their 'complex of challenges' may be. Some are gentle, some are sensitive and some are susceptible to 'negative programming'; which is what I suspect has happened and is happening to T. T has been taught by his environment that going the 'negative attention route' (e.g. teasing, whining, complaining, tattling) gets him what he wants (and I'm talking much bigger environment than school here.. school has swung the other way in that T will always be accommodated.. even if that is not in his best interest... as the school environment does not want to deal with the backlash when they decide not to, and I think that the school staff feels sorry for T). I wish I could help T more, I wish I could help school and the rest of his environment understand that they are not doing T any favors. This boy is already pushed to the outer edges of 5th grade society, it's gonna get infinitely worse in Middle School, and then later on as this boy grows into an adult. My heart really does break for this guy, but I need to focus on what is best for Salamander...

And Salamander is no longer on the edge looking in, he's part of things, so it's my job to give him all the tools he needs to continue to be part of things. And yes indeed, who gets to decide that Fatty is an insult, but Shorty is not? It's totally arbitrary.. but unfortunately, that's real life. And while my first instinct always is 'to protect', I also need to allow for Salamander to learn, to grow, and yes, to learn a few painful lessons. If I can impart at this point in his life on Salamander a few tricks and scripts and methods to deal with these types of situations, then hopefully it will carry over into Middle School and beyond. Hopefully I can set the stage now for dealing with grown-up challenges; as to how to not let a difficult boss or co-worker get under your skin, how to deal with rejection, how to deal with all of life's disappointments.

Salamander has known since the beginning days of the various diagnostic processes that his challenges have names, that his challenges result in X, Y or Z being more difficult, results in him doing A, B, or C. I don't believe in not disclosing to a child what is going on.. and I realize that's a very personal choice. Until recently Salamander probably didn't fully understand or comprehend, but that is changing. He is reading books specifically written for children regarding Asperger's, regarding anxiety, regarding bipolar mood storms, regarding angry outbursts, regarding his physical ailments. And of course it's triggering a ton of questions and initiating conversations that are difficult to have (the hardest questions are always "Why did this happen to ME, mom?", and "Will I always have this?"). But these are conversations and thought processes that NEED to take place, to help Salamander eventually grow into a confident and well adjusted adult. An adult who will not avoid the difficult situations, an adult who will advocate for himself, who will try, try and try again.

I am not a big believer in 'avoidance', but I am also not a big believer in 'down playing'. Salamander knows that a whole bunch of things will always be more difficult for him, that there will be things he'll have to do for the rest of his life (diet, supplements, lots of sleep, lots of outdoors time, etc) that will set him apart from others. And that this is, and will continue to be, very hard and d@mn unfair.

What I will NOT allow him to do (and he knows this too.. and trust me, we DO have confrontations and fights about this) is to use his challenges as a reason to give up, to NOT try, or as an excuse to hide behind, or to use to blame everybody else for his life not working out the way he planned, or to justify that everybody else is 'out to get him' (we have enough of THAT going on on his father's side of the family; but truth be told, I too have family members that are guilty of this). If there is anything I want to teach both my boys is that you meet challenges head-on. And it's possible that both my boys will resent the hell out of me as they get older for making them fight, for making them work through their challenges, for not taking the easy way out. And that is something I'll have to come to terms with if that happens...

I realize that I drifted pretty far away from Silk's original comment. And I also realize that I got on my 'yes, society needs to accommodate our kids' challenges, but at the same time we DO also need to teach our kids how society at large works' soapbox...

Take my musings for what they are worth. I so do realize that each child is different, and that each parent knows their child best and, therefore, makes the decisions that are best for that particular child. I'm just sharing where I am coming from...

HERE'S the link to the original post..


At 5:58 AM, January 24, 2009 , Anonymous silk said...

wow, I go away for a couple of days (dealing with viruses here too), and get to come back to see I inspired a whole post! Gee, I might even feel secure enough to go public with my own blog! What a treasure.

And I agree wholeheartedly with everything you said, especially the part about how important it is to let the kids have a say in what they want for themselves or what THEY think is appropriate. Self advocacy is all I think about sometimes; will I have imparted enough of that knowledge before I'm gone? I know there are others that care about my son, but they too will be gone one day. And as much as they care, they don't KNOW him as well as I do, so he NEEDS to learn to express his himself (not doing so almost got him killed a couple of years ago).

As far as the public school thing, believe it or not, I didn't set out to home educate. We have been denied so many services, and I have been wading through the bog of the appeal process ever so slowly - in the meantime, I can't throw him into the snake pit. Part of that is the price of deciding to live in the (safer, cheaper) sticks, be a stay at home mom, and have less options nearby. This certainly eliminated the possibility of having private school tuition funds or geographical availability.

What you were saying about the two boys having commonality but not compatibility; I have often thought what a shame it is for my own two sons who are both on the spectrum not to be able to overcome both the normalcy of sibling rivalry and personal sensory overload issues in order to bond more and empathize minimally with a "we need to stick together" perspective. Ironically I think my younger one will need/want a classroom full of kids, if only I can find a teacher who understands the importance of locked doors and constant vigilance.

When to tell them what they've got? Well, that was hard for me to figure out. First it took forever for US to find out. Then I was very unsure about whether his maturity level had reached the ability to comprehend such information. One day he asked ME, "mom, have you ever heard about autism?" It was in his phys ed and health curriculum. I giggled. I do believe it helps a child to know what they are up against, if they can understand it. It was easier for me to figure out when he was old enough to learn about sex, frankly.

But it all leads back to your final point, which is that one size doesn't fit all, and each child is different, and parents know their own kids best. And it's just such a challenge to be a parent at all, I think we all need to be a little more supportive, forgiving, and less judgmental of each other, and band together more ourselves to fight a common enemy for the sake of our kids.

ps I think you're awesome.


Post a Comment

Subscribe to Post Comments [Atom]

<< Home