Monday morning, we toured the first of the 2 collaborative programs we have to choose from for Meredith. This classroom is in Medfield at the Wheelock School. There are 3 other students in the class, Meredith would be the fourth. The teacher seemed great, we liked her a lot. She is very eager and enthusiatsic about the kids and the program. She was warm and friendly. There is a nurse in the classroom all day which is awesome, since all the other kids in the class have seizure disorders. This school would be about a 20-25 minute ride on the bus for Meredith and she would be picked up at 8am - which is good because this leaves me enough time to get to work by 9 without needing a morning sitter! I was a little surprised how much older the other kids were. There were 2 boys, both age 8 and one girl who is 6. They reminded us that since we are really focusing on developmental level here, the ages of the kids is slightly less important. Our coordinator keeps using the term "low incidence". Really driving home the fact that there just aren't many kids around with these kinds of needs. Makes sense, just wasn't what we expected. Since these classes can move from town to town depending on where the low incidence kids are, we liked that it really felt like a classroom - it didn't feel transient or temporary. We got to meet one of the boys on our visit. His name was CJ and he was really sweet. It's definitely a very low functioning class and I found myself looking around the classroom thinking - I can't believe this is where we "fit". It's crazy. Sometimes it's still a lot to wrap my head around. As much as I feel at peace with everything now, there are these moments that hit me like a truck where I still can't believe this is my life. Even though I love it and even though Meredith fills my life with more joy than I could have ever imagined. I still can't believe this. I wonder if that will ever go away. Overall, we liked the school and think Meredith would do just fine there. Since we have a choice, we are keeping our options open and are excited to see the other program to have something to compare it to. There seems to be mass confusion around where this other program actually is. It's moving and our coordinator isn't sure where or whats going on. So we'll go tour this other mystery class in its mystery location as soon as we can!
Meredith has been doing awesome. Happy, feeling good and full of smiles. She easily tolerates an hour and a half in her stander at a time now. We try to get her in there a couple times a day so she's getting 2-3 hours in there. You can really see the progress she's making with her vision and ability to focus on an object. You can actually see the coordination starting to develop while she watches her own hands while playing with toys - especially in the stander. We haven't seen her roll since November, hopefully that comes back again. And she still won't push up on her arms while on her belly. We work on that a lot since a little arm strength would go a long way for her! For example, she doesn't use her arms at all to stabilize herself when she's sitting, so she falls right over. Arms serve one purpose for Meredith - entertainment - because they have hands on the end of them! We've seen huge progress since we got her Dilantin levels straightened out, it's obvious she's feeling much better. We are loving all the watching she does now. Watches Greg and I everywhere we walk and follows us with her eyes or watches us while driving in the car. I love turning around in the car and seeing her looking right at us. Her favorite thing to watch is still her own hands, but now she looks at us and her environment so much more. Greg jokes that if he dressed up as the Hamburger Helper guy (giant hand) she'd be a lot more interested in us : ) She's still not sitting on her own or weight bearing on her feet without the stander but is definitely getting stronger. We saw a Physiatrist a couple weeks ago who told us to never give up hope - he has some kids he sees who didn't walk until age 8. It's still definitely a possibility for her, even if she always needs assistance with a gait trainer or walker. It could still happen!! We are not as hung up on this as we once were, but I'd be lying if I said I didn't REALLY want that one thing for her. We do. And hopefully someday it will happen for her : )
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I'm glad you liked the program. This part of the journey is so overwhelming to me. I'll likely start touring possible programs here in June (so that I can get the tours in before the end of the school year, since Sam turns three in Sept.). It just feels like such a HUGE upheaval of everything we know. Different therapists, etc. And, like you, our programs move around and LAUSD is also making huge budget cuts and discontinuing some, so its like I can tour them now, and there's no guarantee those particular programs will exist next year. Frustrating.
ReplyDeleteI am so so encouraged by what your physiatrist said about walking. Like you, although I tell myself walking isn't required for a happy, full life, I really really really want to hold my girl's hand someday and walk alongside her. So badly.
Sending our best to you and your smiley girl!