You know what? It went really, really well.
I only brought two people with me: Patti, Connor's Family Conversations (his Deaf and HoH program) teacher, and Julie, Connor's ST. While I could have brought the whole gang, I felt like maybe bringing in too many people would make it seem like I was being too antagonistic, so I kept the numbers on our side low. Julie works closely with Connor's PT-- they have overlapping sessions-- so she could help out with describing how he was doing physically as well as with eating and communicating in ways other than sign. Patti could cover the SEE side of the story, and I could fill in the blanks.
I guess I really felt like I needed to bring a couple of people with me because I'm so used to others showing understandable scepticism regarding Connor's abilities. I mean, here's a kid with a two volume medical file that screams PROGNOSIS EXTREMELY DIRE and I'm claiming that not only is he doing more than just breathing, which is all he was expected to do, but he has 41 signs and he's making up short sentences and following simple directions. I was expecting to have to explain this to a group of six people who were watching Connor stare at the wall, so I can't say I would have blamed them if they'd thought I was one of those mothers who thinks their child is a genius and makes stuff up. I wanted somebody else there with a degree and a more objective opinion to say-- "No, he is doing that-- I've seen him," so we didn't end up in a Michigan J. Frog cartoon.
Connor really stepped up to the plate, though. The PT started things off by getting down on the mats with him and really being hands on, which is a fantastic way to break the ice with my child. He loves to be man-handled-- turned upside down, zoomed around the room, lifted high up in the air-- and any person who will do that with him can get him to interact with them pretty quickly. It's something I will have to remember with future evaluations-- maybe if the child psychologist swings him around in the air a few times before they start testing he'll be more likely to actually pay attention.
It ended up breaking up into a really informal hour-long session-- one or two of the therapists would be down on the floor with Connor and either me or Julie or Patti, and the other people would be in groups of two or three talking about what he was doing at home, what adaptive equipment we had and what would be needed, and then after a few minutes we'd sort of rotate by some unspoken signal. Most of the people involved hadn't had a chance to look over Connor's medical file, which ordinarily would have been really annoying but I think in this case actually helped. They were open to the idea that he was doing the things that Patti and Julie and I were saying he was doing because they hadn't read all of the reasons why he shouldn't be doing them.
The fact that Connor did do so extremely well probably didn't hurt anything either. He charmed the pants off of everybody by smiling and giggling a lot, watching everything very closely, and demonstrating a bunch of signs (such as "Potty, please!"). I'd brought a sheet with all of Connor's home signs written down on it as well as a quick one-page medical synopsis. The sheet of signs proved extremely helpful because I could tell the therapists-- "See? He just signed 'potty'" and then they could look down at the sheet and see that what he'd just done and what was on the paper matched. He also showed that he knew about flash cards, demonstrated his "jumping," some of his "love butts," and stood up and sat down on command.
Though it was subtle, there were signs that he wasn't entirely comfortable with the situation. He didn't start making any noise at all until the hour was almost up, which is very unusual for my child-- he's pretty vocal. He also didn't want anything to do with the switch toy I'd brought with me-- a toy that's usually his favorite. He pulled his left hearing aid out maybe nine or ten times over the course of the hour-- something he almost never does-- so I think maybe the noise and activity was getting to him. I was so proud of him though-- he really did a great job!
Unlike the transition meeting, my suggestions were met with enthusiasm instead of "here's why we can't do that." Nobody said anything about the Deaf and HoH school being too far away, or that an aide would be an issue. The PT and OT and I got into a discussion about the different therapists and who would be the best fit for him based on his learning style. The Deaf and HoH coordinator and I had a very good discussion about home signs and how we could modify signs to fit Connor's abilities. The Special Ed teacher and I talked about how the cognitive test really was not appropriate because of Connor's motor skills (and she was the one to bring it up!), and she modified some of the questions accordingly. Strangely enough, the only one that I didn't have a great conversation about Connor with (or really any conversation at all) was the child psychologist/coordinator-- the one who had been at the transition meeting. She kind of stuck to the edges of the room. Maybe she's just really quiet.
Overall, however, things went really well. The other therapists actually asked me at the end of the evaluation if I would consider volunteering in the Deaf and HoH classroom with the other children. Craziness.
We'll have the evaluation results meeting in a few weeks, and hopefully all of this will translate on paper into a great recommendation for services, and ultimately, IEP. I'm just so happy that I can go in with the confidence that we'll be working together as a team and not fighting every step of the way to get the services Connor needs, and I'm much, much more comfortable about the idea of Connor going into this school district than I was before this meeting.
The next step: visiting classrooms. Whoo hoo!
~Jess
11 comments:
What great news! 41 signs? That's amazing! I hope things continue to go well with his transition to school!
Hi! I agree, 41 signs is a real feat!
I am glad things went well, I know how stressful and worrisome they can be. I am not surprised Connor charmed them! Isn't it amazing how far charm will get our children? Max continues to charm therapists and teachers and whoever else alike, it is a wonderful trait to get you through life. I know a lot of adults who could use more of it!
Anyway, glad you had such a good experience.
THIS IS AWESOME! Yay Connor! Oh, by the way, that picture of him is TOO CUTE... so I want one.
I love that photo. He's like a mini Thinker!
-Jing
Connor a little fighter, isn't he? GO, CONNOR, GO!!!
Lucus'Mommy: Thanks! Family Conversations has been incredibly helpful for us. When we started the program last February, he only had two signs, so he's made some huge progress in the last year!
Ellen: This may just be for me, but I've noticed that it's much easier to get appointments, referrals, services, or whatever it is we're asking for when my son has turned on the charm and made the doctor, secretary, etc fall half in love with him. I try to back it up by being nice and personable, but I'm not half as cute as he is, so I'm not sure that my end carries any weight. :)
Gloria: You want a picture or you want a Connor? Because if you want a Connor, you're just going to have to get your own. Mine is not going anywhere. :)
We need a picture of Elayna too!
Jing: Isn't it cute? It's from my parent's house-- we took it over Christmas break. No doubt he is making plans for world conquest. I suspect he's conspiring with the cat.
Julia O'C: He is a fighter-- aren't all our kids? I know Emmett is! If I'd been in his situation, I probably would have been born, taken a look around, said "That's it! I'm done!" and quit right there. I learn something from him every day. :)
Congrats to both you and Connor! You must be very relieved. My mother (long time elementary teacher) always says that a kid's worst enemy is low expectations on the part of teachers and professionals, based on some file somewhere.
What a good meeting. To have them meet Connor and see what he is like is a great idea. It gives Connor the opportunity to be more of a person than a list of diagnosises. It doesn't hurt that he is too cute as well. We are not to bring our kids at our meeting but I will bring a big picture of my daughter to remind them that she is a beautiful girl that just needs some extra help to suceed.
I'm so glad things went well! Those initial ones are always so menacing in so many ways.
That photo is priceless. I love it.
(oh, BTW, noticed my link - thank you... moved my blog to www.GeneralHysteria.com) I'm still getting all mine in the blogroll there, so look for yours soon.
Julia: Your Mom is so right! It's funny, but I have a couple of friends who are teachers, and they complain about the exact opposite-- the parents that have low expectations for their kids. I guess it goes both ways. :)
BusyLizzyMom: We actually had to bring Connor to the meeting-- I'm not sure how they work IEPs in Canada, but here the school has to evaluate him to see if he qualifies for services-- they can't just look at his two inch thick file and say, "Yeah, this kid's probably a good bet." Unfortunately the people that were at this meeting then just make recommendations-- it's the administration that decides what services he really gets. The next meeting will be a big get together to put all of the notes together and send the recommendation to the school district, and then we'll have the IEP meeting-- probably with a bunch of people who have only seen Connor on paper. This was the last meeting Connor will be there for. Hopefully their recommendations will carry enough weight that we'll get what we need! I really like the idea of taking a picture to remind them he's more than just his diagnosis-- I may steal that idea. :)
Mia: Oops! Sorry the link was broken. I usually check all the blogs off my dashboard, and it was working there for some weird reason. I just tried adding your new URL, and while I can type it in up top and get the correct thing, it gives me a broken link when I try adding it on my blogroll. Ideas?
~Jess
Nevermind, Mia-- I fixed it!
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