But today has been rough for some reason, and yesterday wasn't exactly a walk in the park. I'm not sure what has changed, and it's exhausting to constantly try and come up with a reason for it. Has anything in the routine changed? Are there new therapists or teachers? A change in medication? Have either of them been sick, or not sleeping well? Is he hungry? What is the mysterious reason for this change in behaviors?
At least one of these things occurs practically all the time. And the reason is Fragile X. I get so tired of trying to think of what might have caused a behavior. And trying to figure out what to do about it. I hate when they ask me. I want to say, isn't that why you are here? If I knew what the heck to do with these kids, I wouldn't need a team of 8 therapists rotating through my house every day. One night this week three of them were here until almost 7:30. They were training someone, and I had no idea how much I rely on their leaving by 7:00 PM until they were here later. I was just desperate for them to leave so I could relax, put on my mental PJs. I mean, with people working in my house all afternoon, I can't really let my hair down, you know? And I didn't realize how much I need them to leave until they didn't.
There's even therapy on Saturday morning. I so look forward to Sundays, when nobody comes over!
3 comments:
Yep... we finished ABA last summer, but I got that question about "what's changed" when the boys had a particularly distracted or non-compliant day/days/week etc. And you're RIGHT, it's so hard to keep trying to think what's "different." And the SBA is always looking at you, prompting you with ideas, waiting... well?
Oh yes...not feeling really "at home" in your home gets old. Although I also thank my lucky stars that I get some respite, or I'd totally lose my mind.
It does get frustrating always looking for a "reason" for behaviors, because sometimes they just ARE. There always seems to be an implication when someone asks about conditions, as if we can change something anyway!
Oh this blog really tore through my heart. So many times when my Fragile X son was growing up...even now at 25 he still has times when he gets frustrated or angry for unknown reasons and lashes out or stamps his foot so hard that it resonates through the floor of the house. When he was a child he would bite his hand so hard it would bleed, sometimes while hitting one one of his siblings at the same time. Or he would scratch your face while you tried to pick him up, or slap you. There were times he hit or slapped his teachers and therapists. He was expelled from school twice and they threated to remove him completely if we couldn't get his agression under control. They kept asking me what was causing it. Duh, it's Fragile X, stupid. And if I only knew precisely what was going on in his head, don't they think I would have done anything to stop it? Once he assaulted me so badly I had scratches on my hands and arms that were so deep they bled. We ended up admitting him to a rehab hospital for a week. It wasn't a very appropriate placement; there were several teenagers there his age who had either tried to commit suicide or had some form of mental illness, but were not mentally disabled or autistic. They put my son on Naltrexone, which is essentially for heroin addicts. It was awful- he became very lethargic and unresponsive. The medicine caused him to vomit, especially in the mornings after breakfast. He lost weight we were unsure of when the projectile vomiting would occur. Eventually he was weaned off this drug and I regret having to go there, but at the time were without options. We had various people coming through the house to 'help' but I always found it invasive. It was so hard to be a family. I always felt like I was under a microscope. And the paperwork - I can't imagine how you get through it with two. My son is a twin but his twin is unaffected. I read your blogs and feel once again everything that you are feeling. I wish I would have kept a blog. 25 years ago there just wasn't the knowledge, or support or the technology. I guess what I appreciate the most is your sense of humor, because I constantly told everyone who would ask me how I cope, that I could never do it if I couldn't laugh at myself or keep a sense of humor about this. At 25 he still lives at home while we wait for his housing options to come through. His aggression has subsided almost completely. Occasionally you will see some frustration but you can usually tell when it builds, and take measures to avoid the blow up. He expresses love, and we have our tender moments when out of the blue he'll say "I love you mommy" and I melt. "I love you too, sugar" and it's like he could never be that aggressive child I mentioned before. I've got my mental pj's on and he's my sugar-doo-wee. Sorry for the long rant.
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