Housekeeping

First, apologies for the lack of posting recently - busy time of year with both kids right now.

 

Now, there are some loose ends to tidy-up here on the Planet ... 

Wondering about Toad's hives? So am I, frankly. We are at about 6 weeks now, since this event started and despite all of the anti-histamine he's on, they still break through. Not as overwhelming as they were, but they are still erupting. One morning last week Toadie had a dentist appointment. He requires sedation for this, and his dentist prefers that we not give him any meds the same morning, so, he had to miss one dose of a couple of his anti-histamines - but that night he looked like he did 3 weeks ago. It's taken a few days to get them under control again but clearly, we are barely keeping on top of things if missing one dose had such a significant impact.

We'll be following up with the allergist in another week or so, I guess we just have to do what we can for now to keep him comfortable.

 

And speaking of the dentist...

I know I've posted here before about what it's like taking Toad to the dentist (http://planetjosh.squarespace.com/journal/2010/7/16/a-day-in-the-life.html). Long story short, he's had one major session under general anaesthesia, the rest of the time we have tried to do what can be done with oral sedation. One time, the sedation went amazingly well and his dentist was able to get a really good look in his mouth and they were able to clean his teeth, all the things that needed to be done. Since that one time? Not so much. Same meds, opposite reaction. He would get hyper instead of sleepy. Or he'd get a little sleepy, but nowhere near enough to allow the dentist to accomplish anything. So it's been a couple of years since he's had a good look inside Toadie's mouth.

We figured we were headed for another session under general, but Dr Kenny (our most fantastically wonderful dentist - I am trying to convince him to take adults, because I want him to be MY dentist!) wanted to try one more time with just oral sedation. But he wanted to try something different this time. So off we went last Wed morning and this time, they gave him Ambien. They crushed the pill up into powder, mixed it in some water for me and put it in a syringe - Toad will take anything this way, we've been really lucky with that. Within about 15 minutes, he was clearly tired. He took himself over to one of the empty chairs and lay down on it. Mind you, it was also about as far away from the chair that he was supposed to be in as he could get - always vigilant, my Toad, he's not easily fooled. I brought him back over to where we were supposed to be, and he lay down again, though all the while keeping an eye on the assistant that was assigned to him. We moved in to one of the private rooms, and he lay down again. His eyes were so heavy, he really wanted to sleep - but he was also highly suspicious so he just wouldn't let himself go. Dr Kenny came in once to check on him and he sat bolt upright and yelled "NO!" I had to hug him and keep him on the chair. Poor Dr Kenny. So he left in the hopes that Toad would settle enough to allow him to get in his mouth. He just. wouldn't. sleep. He was SO tired. But he wouldn't give in. Always watching - whenever the assistant moved, Toad's head would spin around to see what she was doing. Constant alert. It was a bit like trying to tranquilize an elephant with a thumb-tack. If you want this boy out, you're going to have to use the heavy artillery.

It was clear Toad wasn't going to sleep, no matter how tired he was. But, Dr Kenny thought he might be too tired to fight very hard, so he wanted to give it a go with a couple of us holding him. Toad, not Dr Kenny. Ok, the dentist is really really nice, but seriously. So with me holding Toad's arms and the assistant holding his shoulders, my mom holding his legs, and Dr Kenny holding his head and opening his mouth, Toad got his teeth checked. We also got a quick x-ray, and, cleaned his teeth a bit. He wasn't fighting very hard, so it may sound horrible, but it actually wasn't too bad. I am not one to put Toad through something if it's going to be too hard of a fight, that's not fair to him. But this was ok, everyone was gentle, and best of all, Dr Kenny was happy with what he saw! No cavities (miracle), and he says he doesn't think we'll have to do anything under General anaesthesia for at least another year or so (it's possible Toadie might need a couple of teeth pulled, like he did the last time, but not just yet). YAY!

He didn't even sleep on the way home in the car, even though he was close. When we got home, he was Toad as usual. Amazing.

 

Then, this happened:  

 

Now, I first found out about this, on Facebook, of all places - one night last week one of my friends who has a child at Toad's school, posted on my wall, saying he'd just heard Josh's name called for an "All A's" award at the awards night ceremony being held at the high-school, and was I there? Ummmm, noooooo, because, I had no idea, and also, WHAT?!? So this threw me off a bit. I knew that there was an awards night for the school, but, didn't think anything of it. No one had mentioned that Toad was getting anything. It's possible that I was supposed to just know, but, since I don't actually get report cards for him as he's evaluated according to his IEP, I didn't have a clue - not even a Blue's Clue.

And while I think it's really nice that they did this, I have to admit, I have mixed feelings about it. Obviously, all A's for Toad is NOT the same as all A's for a typical child at his school. And honestly, I'm not even sure what the grades were for or how they were assigned. Nonetheless, not the same. And while I appreciate the recognition of his efforts because school is pretty hard for him, I have to wonder about the other kids - did they give ALL the kids in the Sp Ed class this award? How does this make the Gen Ed kids who get the same award feel? At 12, 13 years old, these kids know that there's a difference. Since I had no idea this was happening I couldn't ask the questions I wanted to. I really do appreciate the school recognizing his efforts, don't get me wrong. I guess I'm just not sure that an "all A's" award is necessarily the way to do it. Effort? Participation? Overcoming Challenges award? That might make more sense. I felt badly about not being at awards night but then realized that Toad wouldn't have gotten anything out of it and probably wouldn't have been that happy having to sit and be quiet for all that time, only to have me shepherd him up to get his piece of paper, which doesn't mean anything to him anyway. But they sent it home, and it was a nice thing for the school to have done, so there we go.

 

Mr Zach? Had his eyes checked to make sure that his headaches weren't being caused by a side effect of the growth hormone, and everything was fine. So that's good. He does have a history of migraines so, I suppose we'll have to be aware that visual auras are now something he might experience in conjunction with them.

 

Now, a follow-up to the Science Center debacle.

I got a phone call last Tuesday afternoon from the VP of Guest Services/Theater operations - she had received the letter I sent and wanted to call and apologize. I was impressed, as I had sent the letter on Saturday and Monday was a holiday, she could only have received it that day. She was very nice, and was sorry that we had to go through that experience. She had not had a chance to talk to the staff yet but assured me that she would do so. She asked me about a couple of alternatives as far as what could have been done to accommodate Josh while still making sure that no one else would have been disturbed and I thought her ideas were good (for example, if we had been asked to move to the back row, so that there wouldn't have been anyone sitting behind or above to be bothered by the light of the screen, would that have been ok? I said sure, it would certainly have been better than being asked to leave). She mentioned that the Science Center is working with parents of autistic children in an effort to make sure that they can benefit/enjoy what it has to offer - they are going to have special early entry days specifically for families with autistic kids, so that they can come when there aren't so many people, and anyone else there will be understanding of behavior issues that might come up. It was a good conversation, and she was appreciative of my letter. At the end, she asked what movie we had been watching, and I told her. She asked if she could send us free passes to it, so we could come back and see it - I mentioned that Toad had REALLY loved the laser show, and that the movie had been more of a time to participate with his classmates. She was very excited that he had enjoyed the laser show so much, so she offered to send us free passes to one of those, and I told her that Toadie would love that, and thanked her very much.

I didn't post about this right away because I had wanted visual confirmation for you - namely, the laser show passes. But as yet they have not arrived so I can't show them to you. But I did want to let you know that they called, and were sorry for what happened, and at least seem to be intent on making things right. So that was good.

 

Ok, I think I've tidied things up here now, if you want mints on your pillow, that'll be extra.  ;)