Mal has been doing great in OT. He does 30 minutes of heavy work, and manages to sit still for 10 – 15 minutes immediately after. Hmmm not exactly equal there. I am hoping it balances out eventually.
He pulled his old trick of falling over standing still this morning. It’s become quite rare, so Michael was surprised.
We’ve dropped the ABA lady to once a month, which is mainly to check in and see if anything new pops up.
Courtney (his private speech gal, he also sees Kendra twice a week for 30 minutes each) is working with him on the telephone. She is doing his normal speech stuff for the first 20 minutes or so, and then works on the phone. I send a couple of old cell phones in, he loves playing with them. She is trying to get him to play out a phone conversation. This is a typical Malachai phone experience:
The phone rings.
Malachai ignores it.
Malachai, the phone is for you (and I hold it out to him), it’s soandso.
Malachai shies away from the phone, puts his head kind of to the side, simulating feotal position, but without using his entire body to get into it. He also starts to back away, regardless of what is behind/beside him that he may bump into.
I then explain (as gently as possible) to soandso that Malachai doesn’t want to use the phone right now and can he try and phone back later?
It’s a whole huge process where nothing actually gets accomplished. He does this with the fake phone play acting as well.
Courtney is going to talk to some of her colleagues between now and next Wednesday, but in the meantime suggested I find some books about the phone. I have been looking for useful social scripts all week, but she also suggested books about when the phone was invented, how it works, etc.. As it is, I am a dork and have books from when I was a kid that cover topics just like that! Score! I even know where they are, go me! Malachai loves to read, as long as you don’t realize he is reading, and loves science (he wants to build a time machine when he grows up). So, we’re moving at the speed of a sloth, but we’re moving just the same.
I wrote a letter to whoever it goes to about his aid for next year. I am really proud of my letter. I am quoting it below, feel free to use parts of it if you need something similar. I wrote it at the urging of our ESE gal, not that it will absolutely help, but it certainly can’t hurt (her words).
[quote]To Whom It May Concern:,
I am writing this letter to express how helpful I feel the personal aid has been to my son, Malachai Jxxx, this school year.
His schoolwork has markedly improved since he has had access to an aid for a portion of the day. Not only does he bring completed papers home (something that he has trouble doing on his own) but they usually have all the correct answers as well. I have seen the spelling tests and language tests he brings home; Often he will get maybe 3/10 correct when he takes the test with the class, but 9 or 10/10 when he takes the test one on one with the aid.
While I do not feel Malachai needs a personal aid for the full day, I do feel he would benefit greatly from receiving this one on one time again during the next school year.
Malachai also receives outside speech and occupational therapies and has just come so far this year. I would like to see this upward curve continue.
[/quote]
The requisition papers were due this week, so it had to be in ASAP. His IEP is scheduled for September of next school year, but Ellen (ESE) is going to try and do it by the end of this year so his current teacher has input, not a teacher who doesn’t know him.
I’ve also requested he not have the teacher that Dorian has this year as I think it will be a really bad match. She asked who I did want him to have, but I have no idea. The teachers I knew from when Michael & Sara went there are not the teachers who are still there. I told her I trust her judgement, and please keep him out of Mrs. Vxxx’s class.
Wow, what a post. Here is what I really wanted to ask about, thanks for making it this far!
We’re going to Disney in April. I used all the money I made in January/February to buy tickets for all eight of us. I am going the weekend of my moms birthday because it will make my dad happ(ier) than he would be sitting at home all weekend being depressed. I understand Disney handles special needs differently now than it did when I was a kid, and differently than Universal does now. I know I need a note from the doctor on their letter head (I am going to ask for one tomorrow when I pick up D’s referral), but does anyone know if I need anything else?
I don’t abuse it, Mal can handle short waits and we can usually distract him in most lines. It’s those hour+ lines that we can’t do it on. (Can you tell I have guilt over it? This from a kid who never, ever waited in line because she was with the wheelchair party.) It helps us in restaurants and some other sit-down type attactions as well.
I am planning this trip to see shows and stuff that we usually don’t see, so I’d like to know if there is anything I should take into consideration for or about him. We’re Disney veterans. I know not to spend the entire day there, and to make dinner reservations and all that stuff. Last time we were there was a couple of years ago and things change, including him, and I am probably making a bigger deal than it is, but a couple of hours after we arrive I get irritated and am ready to leave because I haven’t planned well enough. I’d like to avoid that. We will not be staying anywhere near the parks this time, so heading back to the hotel for an hour breather and going back isn’t an option.
