Tuesday, August 31, 2010

Loose teeth and loud squealing

Jaymes has survived his first few days of school. He seems to like his new teacher, and I know he loves the classroom assistant, because she was the person last year who went out with him to the regular ed classroom. They get along so well. I still wish we had Mrs. Colditz- the woman is amazing, and she really cares about Jaymes. Also, she knows him, and she knows me, and understands how I am. New teacher has not gotten to experience the less lovable version of Jaymes' mom. I'm hoping I won't have to bring that side of me out this year, but I'm also fairly realistic and know that things are not going to neatly fall into place just like I would like them to- they never do. I'd probably be lost and confused without something to worry and stress over anyway.

Apparently kiddo lost one of his front teeth last weekend, and so is rocking the jack-o-lantern look. Unfortunately, tonight he demonstrated a somewhat nauseating ability to flick his other front tooth back and forth with his tongue... So, I would guess that by morning, he'll be done with the jack-o-lantern look and will have donned his "i need dentures" look. I can only hope I find the tooth this time- I suspect the first one was swallowed. I may want a baby tooth to keep for memories' sake, but not bad enough to go diaper digging for one.

The lactose free diet has been so so so wonderful for my little buddy. We've gone from 7-8 overflowing diapers from hell to 1-2 at the most. It's a miracle. Really. Yay. Totally worth all the time spent obsessively checking labels at the grocery store, and buying the super pricy fake cheese.

Seems like the new meds have become not so new. I'm guessing the honeymoon period has ended, medication-wise. We've had a lot more conflict and irritable yelling. We're also having quite a bit of the full on screaming, lying on the ground fits. He even does this with the new gentleman who comes to work with him 4 days a week. I can't really be too upset, I'm very lucky that Jaymes is not doing any of the things he was doing prior to his hospitalization. Not hitting, kicking, biting. He's thought about hitting, and started to, but that was immediately nipped in the bud. We're not going back to that- not for anything.

A lot of Jaymes' little oddities are becoming more and more frequent, and more obvious. High pitched squealing, or repeating "buttcheeks" over and over in a mouse-like voice at the top of his lungs... Not sure why he uses that particular word, he certainly didn't hear it at home. I'm not all that bothered by goofiness in public... The angry screaming/yelling/flailing in public is embarrassing, yes. I really hate that, it's humiliating, The little stimming behaviors, the behaviors that so obviously set Jaymes apart from his peers of the same age, really bother my husband. They don't bother me so much as worry me. A couple weeks ago we were in the toy aisle at Walmart, along with a couple of boys who were 7-8 years old. They were discussing which super hero looked cooler, and arguing over who had the better super powers. Jaymes was sitting in the cart, smacking himself in the cheek with his filthy stuffed jellyfish, squeaking to himself and rocking back and forth. It hits me randomly, times like these, how very different Jaymes is and how delayed he really is. It's not a grieving kind of thing, I try not to ever do that... Just kind of a "wow, I didn't see that before." kind of a moment. Weird. It got me thinking about Jaymes' future. Will he still be in diapers, squealing and flapping his jellyfish when he's in middle school? Will he ever really be able to lead any kind of a life? Will he live with us for life? Will it eventually get so bad that our only option will be to find an inpatient living situation for him? Ever since his diagnosis, the one thing I always told myself we would NEVER do is institutionalize Jaymes. I still feel like this. But, I've also come to realize that the 10 days he was hospitalized were a whole lot easier. The house was calm, peaceful, and Sierra was happy. She missed her brother, but she was so much more pleasant. For me, it's worth having Jaymes home. I prefer a loud, chaotic household. I can deal with weekends spent listening to screams and toys breaking. I don't mind scrubbing god-knows-what out of Jaymes' carpet, and refolding all the clothes he removed from his closet for the fiftieth time. I don't mind ignoring loud screeches while grocery shopping. For me, it's really not that bad. I'm used to it.

But i worry about Sierra. She is getting older, and is starting to realize that Jaymes is a lot different than the other kids. Soon she will be old enough that she feels embarrassment when we're in public and he gets upset. While we have done our best to teach Sierra tolerance and understanding of her brother's differences, I don't want her to feel the way some of my friends hve felt about their disabled siblings. One friend in particular comes to mind... Her feelings about her childhood with a developmentally delayed sister are my worst nightmare for Sierra. She spent her childhood being humiliated by her sister's "different" behaviors, and dealt with feeling pushed aside by her parents, who catered to the needs of the sister more than the "normal" kid.

I don't want Sierra to feel the way my friend feels, when she grows up. I want her childhood to be happy, full of happy memories. I never want her to feel set aside, like she is less important. I try to do as much special extra stuff with Sisi as possible... We play while Jaymes is at school, we go to the park, to the playground, to the "horsie store" (Tractor Supply Co.) I am not sure when Jaymes' differences will become bothersome to her. In a way they already have, but not to the point of it being a huge deal.

I don't know. My husband and I have been talking a lot about our fears for Jaymes' future. We try not to be pessimistic, and our attempts at "serious" conversation tend to be interrupted with very much non PC jokes, that serve to lighten the mood. It's not a happy topic, and I've always found it a lot easier to pretend that Jaymes will outgrow this and be a normal, capable, happy teen. I've always, of course, known deep down that this probably will not happen though.

I guess the only thing we can do is get Jaymes every service we can, and try to give him the tools to grow and develop into someone who can at the very least become a functional part of society. In happier news, our respite hours were approved for this year, we get 48 hours this year rather than the 60 of last year, but given the economy, I think we are lucky for getting anything at all. We were also incredibly lucky to qualify for personal assistance hours. A very nice gentleman named Anthony comes out four days a week, for three hours. He has a few different goals to work on with Jaymes, and spends time at the house, helping Jaymes do basic living skills. He also takes him out in the community, and accompanies us to places like the park. He and Jaymes are getting to know one another, and Jaymes is fond of him enough now to pitch hysterical fits in front of him... So I guess the kid is comfortable with him.

I love having the help. I have been run ragged trying to keep up with both kids, Jaymes' destruction, trying to save him from the million and one ways he tries to kill/maim himself... I did not realize how tired I was until I was at the park, not having to do it myself. It is SO nice to be able to push Sierra on the swings without having to abruptly snatch her out and run to stop Jaymes from doing whatever he was doing. She is enjoying the fact that I can actually devote some time to just her. and I am accomplishing things again. My house is clean, my work for my four online classes is up to date. It's a miracle.

So all in all, things are about where they've always been... But I'm so much less tired and frenzied. I have time to breathe. So I am grateful. As far as Jaymes goes, we don't know whats coming for him. And though my mind wants to alternate between obsessing over how bad things could potentially be and remaining blissfully optimistic (unrealistically so), I'm thinking that I'm pretty lucky to have the help I now have. We'll continue to take things one day at a time and enjoy Jaymes- loud squeals of "buttcheeks!!!!" and all.

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