"Using a tool"

Ian will now tap on a xylophone with a stick, or a toy, or anything. This is called "using a tool" in the therapy world and it's a pretty big deal. Of course I freaked out when I saw him do it for the first time. He's never banged on anything with an object. He will bang on electronic drums, a piano, etc, with his hands, but now he's actually picking up the xylophone stick and tapping it. I've tried for a year to get him to be interested in banging on things but he never took to it. After working on it for a while in therapy, with Erin, who is amazing with him, he's also dabbing with paint dabbers! This is a huge deal as well. He's getting the concepts :-)

The glasses thing is a major pain! He looks adorable in them but he just doesn't want to keep them on. No surprise! I wouldn't either. They seem so strong. I tried to get a hold of Dr. Borchert's nurse but haven't been able to connect yet. Just wondering if he's taking them off because they are physically, or visually, uncomfortable. Or just because it's something new on his face. Just as he got one thing off his face during the day (his O2) here is another. On that note, he doesn't want to keep his cannula on while he's sleeping either. He keeps pulling it off and we just put it back on, over and over. But now he fights it. Oy vey!

School is going well. As I mentioned before, I think it will be amazing for him. The therapy/school combo is not. It's so tricky to get a schedule at NAPA and what we finally secured is Tues/Fri afternoons. But having therapy after school (and maybe a nap in the car in between while picking up his big sister) is just too much for him. I have to rework it to be on Mon/Wed, at least for the next 6 months while he's at UCLA. Even if it means giving up CME, which I really don't want to do. Two more therapists are getting trained in November and Ian has worked with them both so that should open up more spots. Maybe we can work it back in then if we can't get it now. It's just a bummer because it seemed to be pushing him so much further. But now it's just a fight. Maybe we can just focus on treadmill and obstacle course work.

Next week we will see the Prompt therapist at Pathways. Angie, our regular therapist, will be out of town so we will see Uma. Will be interesting to see how he does with her. I've been trying to do the prompt cues but not sure if I'm really doing it correctly. His current communication is still with his eyes, looking back and forth from an object to me, or with grunts. He's also kind of "talking" to me sometimes with an uh uh sound which is interesting. We talk back and forth that way. There are no more sounds like Dadda, did, ney, ree, ning. All are gone for now. I'm still holding out hope. He's so communicative in other ways, which might be more important than making sounds for now anyway. He's constantly grabbing my hands to get me to do what he wants, whether it be pick him up, clap, do the alphabet, say goodnight to his boat painting, etc.

I'm just breathing and taking in all that is positive with him, which is a ton. He's doing so amazingly well. And just so beautiful and sweet :-) We are all in love with him. And to watch Lila and Ian together, they are just goo goo for each other, which is the best!

Right this minute I'm watching my husband sleep (which is rare ;-) and listening to the ocean crash, which is doing wonders for my breathing. We are on a weekend away, just a bit south of our home, but it's worlds away from our daily frenzy.  One of my sister's and brother-in-law's (and a niece who had to go back last night) came down to hang with the kids while we celebrate our 13th wedding Anniversary. My sis had a class to attend in the area this week so she just stayed longer. Really lovely! So needed. I feel quite selfish taking this kind of time. Seems I can't remember her or my other siblings taking so much time away from their kids. But I regularly feel as if I'm loosing it emotionally and this definitely helps recharge. Especially with Mike and I having time.

The man literally never stops working. It's been great to have him in town for the last few weeks. And even better, he's been there in the mornings. He's been making breakfast and has been able to drop Lila most of the days Ian has school. Which gives them a bit of time together and me the freedom to not stress as much getting Ian up there. It really makes a huge difference to how we begin our day. But each night, if he doesn't have a late meeting or out of town, he shows up just in time to read a book with Lila before bed. And I totally support this because I know what he's working on. He's very respectful of making sure I'm okay with it. And I am. But often times I find myself on edge, which doesn't make me feel right with the kids. I just have to step back, breathe, and back at it.