Wednesday, July 15, 2009

Todays post: All about Mommy

Aren't you excited? What? No? Well that's ok, I'll quiet the angry masses with a Jaymes update before I get to today's post.

Yesterday Jaymes had his annual OT re-evaluation. The usual stuff- stacking blocks, copying shapes with the blocks, cutting, drawing skills, etc. Jaymes has done this quite a few times, and it's never been a great experience for anyone involved. In the past few years he has screamed, thrown blocks at the OT's head, bitten, spat, and totally ignored. He's managed to break wooden blocks (how? I don't know. He's gifted. I know you're jealous.) and make OT's burst into tears.

This year, however, was awesome. Jaymes sat, Jaymes concentrated, and Jaymes TRIED. He's never actually put in the effort and focus to make a worthwhile effort before. No, I'm not being negative here, I'm saying that this is the first time he has ever genuinely been motivated to do the things asked of him. Now, he still couldn't do a good bit of it, and I don't expect him to be able to. I don't care if my almost six year old tests at a 1-2-3 year age equivalent. We're used to that, it is what it is. I'm not fond of reading the evaluation reports, but 2 year age equivalent is certainly better than 6 month, right?!

Anyway, Jaymes really did sucg an amazing job. He cut out an almost perfect circle, he cut the square, he cut the line. He did not want to stack the blocks (mostly because he knew that blocks are for lining up, and only someone who just doesn't "get it" would want to stack them upwards) but eventually he did. I think he beat his previous score on the block stacking. Good for him. He un-buttoned the buttons, and I think might have done one back up but I cannot remember.

In general, he worked his cute little butt off, and I am so impressed. Both I and his OT agree that there has been TREMENDOUS progress in the last year. He's a different child entirely, skill-wise, and I am so incredibly proud.

On to my post for today. Yesterday at OT, we were in the same room as another little boy (maybe 7 years old? I'm a terrible judge of age) and his therapist. They were discussing his Aspergers and how that is a disability like other kids at therapy were in wheelchairs, or have trouble with a weak hand, or who scream like hellions like my child. She was trying to teach him what is and is not appropriate to say to other kids with disabilities, and I found it very interesting. Watching that kid in the waiting room was also really interesting. I really haven't been around a lot of Aspie kids, nor have I read a lot about it, simply because my interest lies in Jaymes autism, which is an entirely different animal altogether (autism, not Jaymes). The little boy was telling his dad that he was very shy and that's why when another kid said hello to him, he just looked away. Now, 5 minutes before he hadn't been too shy to ask a kid in a walker what was wrong with him, but that's aspergers I suppose. Like I said- no real experience with it, so I hope no one takes offense. Anyway, I found it all really interesting when laid out simply by a kid.

I can relate to being incredibly shy. In the almost 6 years since Jaymes was born, I've changed a LOT but I still find my social skills greatly lacking. Before he was concieved (oh geeze, I almost typed "convicted"!) I was so shy I couldn't go into a store alone. I couldn't make phone calls unless it was to someone I knew super well. I couldn't go to appointments alone, or cross the road with traffic stopped at a red light, because I didn't want them all to look at me. I couldn't start a conversation, and the thought of going into a new place made me literally sick with fear.

Being pregnant with Jaymes as a stupid 17 year old changed a lot, mostly because I was told to figure it out myself, and given zero help from anyone but close friends. I needed medical coverage, so I went to the Medicaid office and sucked it up and did my application. I needed WIC for formula, so I sucked it up. It was terrifying, and I don't really think the experience really did anything but stress me out, however I did begin to learn how to do things in the real world.

When Jaymes was about one, and we started to notice the signs that something was not right, I had to deal with asserting my opinion that it was more than being a "late bloomer" to the pediatrician. Then going to a zillion new specialist offices, and having to talk to a ton of new people. Still scared me out of my mind, but what can you do? It had to be done, so it was done. I got used to making phone calls, to requesting records, and essentially forced myself to function in situations that were incredibly stressful for me.

Now that Jaymes is almost 6, I can look back and realize how much he has done for me, and how much I've changed. I have no trouble with phone calls or making conversation in waiting rooms. I actually have some other mommy friends, one that we do something with at least once a week. I can go to an IEP meeting and swallow my fear and get to business. Jaymes has taught me to advocate for him and he's taught me that in our life there is no room for self doubt and irrational fear. Isn't it amazing how much our kids can change us?

I'm still just as nervous as I've always been, I still get sick to my stomach at the thought of going somewhere new. I almost didn't go to college registration because I was too afraid to be in there with so many people and not knowing what to do. I did it, and it wasn't that bad, but I'm obsessing over the fear of walking into class on the first day now. I know it's irrational, but it still stresses me out. I'm weird like that. When making plans, I prefer to plan everything out. I'll be here at a specific time, in a specific place. What color car will you be driving, what time will you be there? Do you want me to use the front door or the side door? I have to know every specific, because then I know I can't mess it up. A good example of that is therapy. Sometimes I have Sierra with me and can't go in with Jaymes to speech, so the therapist says to come in toward the end of the session to discuss with her. This freaks me out big time. What time? Should I knock on the door? Walk right in? You can't be vague like that with me. Another example: college starts in August. I have to go from a class at the winston campus to a class at the kernersville campus with 30 mins between to get there. First off, what if I go in too early and the previous class is there and I look stupid? What if I'm late and have to walk in to a full class? What if I don't know it's the right class? What if I sit in the wrong spot? What if I don't understand what to do? Then, what if I don't make it to the next class on time? What if I'm late? What if I get lost and can't find the classroom? These things really really mess with my head.

So I guess in some ways, I've grown, and in others stayed exactly like I always was. I was never the kid in school with a ton of friends, I never knew how to dress right and act right, and even now more often than not I say things that come off entirely differently than I meant them. Thankfully I have friends who get it, and know I'm not trying to act like a freak.

I've debated a few times trying to get evaluated for Aspergers, because all that sounds a lot like what the little kid in the therapy office was saying. But then I realize that at this point in my life, a diagnosis just gives a name to the issue, and maybe gives me an excuse to use. It won't change how I feel or how I cope, nor is there a magical pill I can take to be calm in social situations. I don't know that what I feel is anything abnormal anyway. my family has no issue telling me I'm nuts, having a breakdown, etc... But to be honest, I think I handle things quite well given what I've been handed over the years. I've tried the medication thing and not only is it only good if you have health insurance to help pay for it, but I found myself feeling sick or totally zonked out, and no real change in how I felt or thought on the inside.

I've found it easiest to just know my limitations, to plan around those limitations for the easiest possible ways to handle things, and to thank whatever diety is responsible for giving me Jaymes- because he's been the biggest influence in changing how I think, act, and function.


Anonymous said...

This was a really interesting post and I enjoyed reading it. Jaymes sounds like a wonderful little boy and you obviously love him tremendously. It shines through in droves.

I suspect as he gets older he will learn new things which will surprise you, his beautiful brain is absorbing so much more than you realise. The lining up of blocks is something he obviously has the strong will to do himself, his autism is such an amazing part of him and teaches we parents of autistic children so much more than just regular parenting skills.

Best wishes, CJ xx

Amber DBTD said...

He is a smart little booger, and he makes life much more interesting than it otherwise would be. Glad you found the blog, don't be a stranger ( :

Crystal said...

Great blog entry. Glad that he's improving. :)