I haven’t offered much of a med update in a while because I’m not sure what to say. The 20mg Adderall XR doesn’t seem to be doing the trick. It’s almost as if he’s unmedicated. I’d say we should increase the dose, but his meltdowns have been coming back more and more – I’m worried that more Adderall will just make that worse. He goes from manic to angry in a flash. He moves and talks non-stop. He has zero impulse control. He’s messing with his brothers, the dogs, electronics – anything he can get his hands on.
And I’m not sure the Clonidine is the solution we were hoping for, either – he’s getting up every night within minutes of us (or me) going to bed and sleeping on the couch. That means he’s not really sleeping when he goes to bed (there are at least 2-3 hours between his bedtime and mine!).
Yes, he’s staying in his room because the pill makes him drowsy, but he’s still suffering from insomnia. And I’m not sure why he wants to be on the couch, but I think it’s likely the equivalent of his old sleep-with-his-face-under-the-door move he used do (it’s been a while since he’s done that). He doesn’t want to miss anything. I’m not sure if it’s paranoia or anxiety or what it is that causes that fear of missing out. If someone leaves the room, he immediately asks where they’re going and why. (He’s done this as long as I’ve known him.)
By Thursday last week, we were all pulling our hair out over his hyperactivity, getting into everything, messing with people, breaking things, etc. Something had to give.
Rick called Dr. L first thing Friday morning and left a message with the receptionist to have him call us.
He never called.
I’m not sure what’s up with that, but it’s incredibly frustrating.
By Friday night, we were trying to think of what to do – we weren’t sure we could deal with another weekend of meltdowns and insanity. And our sitter Kay was coming back on Monday – he’d driven her pretty insane her first day – so we were worried about her, too.
We decided to go back to something that works better. I hate changing things around – especially without Dr. L’s knowledge and/or consent – but if he wasn’t going to help us, we had to help ourselves for now. Ritalin works. It’s not perfect, but it seems to work better for him than the Adderall. And we still had a pre-written script from his developmental pediatrician that hadn’t expired. This was just for his AM pills, so we were without the Ritalin booster for the PM, but we were given some short-acting tabs of Adderall, if needed, to go with the XR capsules (we tried that – didn’t help).
Our short term solution is going back to the 80mg of Metadate CD in the AM followed by 10mg of Adderall in the afternoon. Maybe Concerta will be the long-term solution. I don’t know. I just know Saturday and Sunday were infinitely better.
I don’t know what to do, and I hate that feeling of helplessness. We were ALL miserable – all 5 of us. Something had to give. Hopefully Dr. L will have some other ideas to try. I hate mixing up his meds all the time, but we need to find what works for him. I don’t want a zombie for a kid – please don’t think I expect him to be zonked out and perfectly obedient 24/7. I want him to be happy. I want him to have some control. I don’t want him to hurt himself or his brothers. I don’t want him to destroy everything around him (through lack of control).
I want us to be a happy family. I want to be able to take my kids out in public without worrying about the meltdowns (I know this might never change and I understand that).
I want Ryan and Robbie to have things that are special to them without worrying that Big Brother will ruin them.
Ryan and Robbie’s play therapist told us last week that she gets the feeling Robbie is afraid of Colin. I’ve worried about that myself, but it hurts to hear that from an outside source. I don’t ever want my children to feel afraid in their own home.
On that note, I don’t want to feel the rage Colin can induce in us all through his lack of control. I’m tired of the yelling. I’m tired of yelling. I’ve been trying to stop. I don’t want my kids to think I’m angry all the time. I’m not an angry person. I’m just frustrated.
This started as a med update and has turned into me whining.
I just hate not knowing what to do.
In happier news, I’ve been scouring the internet for any kind of assistance – classes, groups, etc – for parents and siblings of autistic and ADHD kids. The coolest thing I’ve found so far is a sports league for special needs kids! They have bowling, soccer, baseball and basketball leagues. For the kids that need it, they offer a league level with buddies – a volunteer stays with your kid through the games, etc. They have altered versions of sports where everyone gets to play and no one’s left out. I’m really excited about this. Sadly, we missed the bowling cut off by just a bit – Colin LOVES bowling. But now we can let him get involved in sports without disrupting an entire team. (We tried soccer last year and it was a pretty dismal failure!)
I need to just step back and take everything one day at a time. I know this. Deep breath.
So many people out there have it harder than we do. I know that. My heart aches for them. At least my kid can talk. At least he CAN run and laugh and interact with others. He can (usually) convey his needs to me.
And he hasn’t scared off the sitter yet! 🙂