This is not a joke.
This is the moment we wait for all day long. The. We continue to hope that he sleeps through the night. If he does, and if he’s a good boy in the morning, I’ll take him swimming. Today was better than yesterday, but each day we wonder which version of Lucas we will get.
We don’t know much about DMDD. Apparently we should focus on that a little because his moods are the toughest challenges. They come and go. A lot of kids with Autism snap, and we get that. Every child is different though. Lucas is angry and screaming one moment, then crying or laughing the next.
Medicine. Lucas is on:
- Guanfacine (Day for ADHD)
- Clonazepam (Anxiety & Sleep)
- Clonidine (ADHD & Sleep)
- Amitryptaline (Sleep)
- Benadryl (Sleep)
- Melatonin (Sleep)
Did you happen to notice that most of those meds are to help him SLEEP!? It’s insane. We have tried risperdal (antipsychotic) and it made him psychotic and morbid. However he gets that way now without it. Focalin (adhd stimulant) have him hardcore rage. Seroquel (antipsychotic & sedation) didn’t help him sleep. We also tried ativan and that just made him rage as well.
He’s in psychotherapy. His doc thinks he needs to get out TONS of energy during the day. Boredom is Lucas’ worst enemy, but who can keep up with him? Not us. He needs a 1:1, a para, or a PCA. I need to call our health insurance and see what he can have. ABA therapy should also be starting soon. A company from MA didn’t have a wait list. They just need more staff… Whenever they find the right fit for Lucas maybe they will reach out. I could also sign him up with another ABA service team and try a wait list here in CT.
Residential programs have been suggested. We didn’t spend a year saving his life, to toss him into a group home. He needs me, and I need him. However I need him to be tolerable. I need him to be able to self regulate. I need more help with my son. It should not be this hard to fight for the right help.
Some days we think he should be off all meds. Maybe the meds cause him to be over emotional, and irritable. Maybe they make him feel awful. How do we know? He can’t tell us. How do we know if the way he’s acting is from the meds, the ADHD, the Autism, the DMDD, or the years of hell he has been through?
Can I go to bed now? I envy the “normalcy” other people have. I didn’t get to workout today, or eat dinner. This is tough because I’m trying to change my lifestyle so I can be healthier. It’s gonna be hard when Lucas bombs go off without warning. We don’t have a schedule. We don’t have peace, and we don’t have time. We do have each other, and that’s a lot.
By the way, Lucas is making paintings now. I call it his “ARTISM”. Turns out, he’s quite the little artist. Check out his paintings HERE
I wish for peace.
Peace, & A DARK QUIET ROOM!