It's been a few months since I've blogged. Mostly, I think, because I haven't had much of a need to vent things in a while. I think as time goes on, I am more and more comfortable with approaching Riley's treatment, accepting our reality, and taking things day by day.
Riley's been getting 20+ hours a week of ABA therapy since May. We have had a lot of issues with it, lots of new staff at the agencies we work with, a therapist that ended up getting fired for being consistently late and not showing up, and just the general stress of having to deal with having people coming in and out of our home every day. It is also a challenge now that my middle son is in preschool just to balance out being there for everyone's needs. I am sad to have to miss out on events at his preschool because they are during therapy time. We hired a new sitter recently but we cannot afford to have her come much at all.
I can say one thing for sure: I am really glad he is getting this therapy. It has made a huge difference. I'm not sure that if we started two and a half years ago when he was initially diagnosed that it would have had as much of an impact. I think that handling the physical issues was the right thing to do.
He is zipping through treatment plans. The last one was about two months ago, and he's met everything except a small piece of one literacy goal. Everything else he's gone above and beyond. We're moving at a fast pace, and our lead therapist tells me each time what a bright kid Riley is and that he's going to do very well in life. I'm starting to realize when people say that, they are being honest, not just blowing smoke up my butt. ;)
We have stopped doing most of the biomedical treatment. The last few things we've done have either made things worse or had no effect. We have instead focused on optimizing his nutrition and basic nutrition supplementation. Still GFCFSF. We still spend more than we can afford on groceries, and it's worth it.
Riley's social interaction and conversations have gone through the roof. He is talking in a way that sometimes makes me stop in my tracks. It's just so... normal. He even recently began talking on the phone- something he was terrified of for a long time. He has conversations with his Grandma now.
His daily routines such as getting himself dressed, brushing teeth, potty, bathing, going to sleep (he 'reads' before bed now and tells us when he's ready to turn off the light) getting on the bus, putting a coat on, etc are all great and I'd say right at age level.
The challenges of autism continue, though. He still has trouble relating to peers and doesn't play a ton with them. He misses social cues and doesn't make an effort to engage. Sleep disruption is still happening, although he's doing great with bedtime routine. He still wakes in the night and wants one of us with him. He's also still struggling with communication at times, though that's also improved by leaps and bounds. Perseveration also continues to be an issue for him. We are over appliances for the most part, but he had moved on to smoke alarms (since they had fire drills at school) and now has moved on to talking about the weather and seasons a ton. He's also been having some trouble with being able to feed himself without making a huge mess. And hands are constantly in his mouth.
My husband and I talk about how our stress is different, of course, mostly because we've had toddlers for so long. Toddlers meaning that Riley's maturity level was stuck in a rut for so long. As his brother (now 3.5) gets older, he will no doubt catch up with things just by example. It's just unusual how long we have had children who are utterly helpless. It's nice to see it start to turn around. I see things changing with him almost daily, and I'm thankful for that.
