Something's clicking

Last week, we had a heart-to-heart with the 2 senior members of our team about B's lack of progress and our worries and fears. We're halfway through an incredibly critical 6-month interval following our last difficult review. This is our time to turn things around and get back on track so to speak. And well, it hasn't been happening. It feels like we have done nothing but experiment and fail. Together we agreed that we might need to re-think our overarching goal. The plan for this 6 months was to get a handle on B's self stimulatory behaviors that interfere with his learning. It was a great plan. If we could make those go away, his learning and progress would likely explode. The problem is that we're not confident that he knows that he's doing it or that he understands that it isn't an acceptable thing to do. And he doesn't have the skills to replace them. To him, this is what playing looks like - he can't separate his stims from the activity. So all of our attempts have primarily frustrated him and set us back. Without going into too much detail (as I've said before, it's all really complicated), we agreed to pull back from the strict requirements around his stims and go from there.

And something clicked. There's no way to know whether it has anything to do with what we are changing (and honestly I don't even care) but his requests have exploded! He seems to have figured out that he can just ask for things and get them. This may sound simple but for B, it's anything but. He is so used to being told what to do and so challenged to communicate his needs. He usually will do just about anything BUT talk as a form of communication. Until now. We are hearing things like "watch Thomas", "go downstairs", "want cheese", "go walk" and very specific requests for what he wants to watch or eat. Literally, he had over 25 requests in 3 hours. My favorite was this morning when he was slyly pulling trains out from the closet downstairs (which he is not supposed to do). Our PCA came down to greet him and he pushed her hand and said "go upstairs" as in "YOU go upstairs."  At OT yesterday, he told the therapist "want swing". These are 2-word requests, specific, spontaneous and very clear. And it's happening all day every day. He is also rocking it in therapy again. We've kind of come full circle to the way things used to be and it just seems like he gets it. He knows the drill and he is working like a champ. We're hesitant to get our hopes up, but something is most definitely clicking. And after the last several months we've had, it is HUGE cause for celebration.

Back at it

I've been back home now for about 2 weeks. It has taken me almost this long to feel caught up and back in the swing of things. This household is a well-oiled machine and if any small part of the routine gets off, it's not easy to get back on track.

I'm happy to be back. It was hard leaving my little man. When I was saying goodbye to him, he sat on my lap and (as he often does), grabbed my arms and wrapped them tight around him. It didn't exactly make it easy to walk away.

I missed him terribly and it killed me knowing that he most likely had no understanding of where I'd gone, why, and when (or if) I'd ever come back. He was very well taken care of and life pretty much continued along without us. Still, in his own little way, B missed me too. One of his programs was working on teaching him the names of familiar people via pictures. I'm told he would flip through the stack, find my picture and hold on to it. Our PCA played old videos for him and he would smile when he heard my voice. Yet I couldn't talk to him on the phone or computer the way you typically would when away from your child. To him, this would likely just be confusing. It felt like we were apart for a very long time.

Reuniting with B is far from typical. Sometimes it feels like he barely notices we're there or have been gone. He doesn't come running up with hugs and kisses the way my older son does. He might come close and then just jump up and down and make a bunch of noise. It's tough to know if this is because he is excited or just something he is doing for his own benefit. This time, he did repeatedly come and sit on my lap and then spout off long gibberish dialect that truly felt like he was trying to recap what I had missed.

Then gradually over the course of the next couple of days, he definitely proved that he was very happy to have me back. He followed me around a lot, watched my every move and has been ultra affectionate. My role in his life is definitely very significant. He may not be able to express it, but he needs me even more than your average 4 year old.

And as hard as it was, being away did provide a bit of a break for me. I can't even quantify what a difference it is to be responsible for only my firstborn. It's kind of a taste of what "normal" family life would be. I didn't have to stop and think about everything I said and did, didn't have to record any data, didn't have someone (or multiple people) observing me and didn't have to obsess about every single thing my kid was or wasn't doing. Oh and I didn't have 6 people in and out of my house all day. It was just me and my little boy on vacation. Except that for us it was terribly incomplete. I hate being a family of 2 or 3. In order to give our older son as close to a typical upbringing as we can, we spend a lot of time as a partial family. It's healthy and definitely necessary but it always bothers me and feels like something is missing. It's not how it's supposed to be. But then none of this really is.

Still, as hard as the day-to-day may be, I'm glad to be back with my guys. And no matter how exhausting and stressful life with B can be, my heart is happier when he is near.