Hi all...
It feels like forever since I've written.
Edwin has had a wheelchair to trial since last week. He has improved dramatically in a week of practicing, and it is working so well this is the one we will purchase for him. As you can see he uses the rubber wheel part to push himself, but it's ok. He gets around well. However, we are looking into some protection over the wheels so that he doesn't get his fingers caught in the spokes. Any suggestions about this would be much appreciated!!!
He will need a wheelchair for distances as he is still not using his walker more than several steps. Having a wheelchair as opposed to a stroller will help him become more independent...especially as he begins school in the fall.
Speaking of which, we had our transition planning meeting with Jerry from Special Ed and our EI team. He was super nice and very informative. The kiddos will attend school down the street from our new home 5 days a week from 7:55-10:35. We are so blessed to live right by the school that has a full time nurse and medical suite in the school as well as 2 aides, a nurse, and a teacher in one of the inclusion Pre-K rooms (the room Edwin will be in.) Edwin will probably do a 12 month program based on his therapy needs. They will be in separate classrooms, which we think is best due to Serena's dominance. Serena will very likely qualify for an IEP based on her PT and OT needs, and her eventual need for voice therapy from vocal cord paralysis. If her academic needs are "normal" after kindergarten she will likely be on a 504 plan for ST. We have our assessment and IEP meeting the first weeks of Sept and they begin the 29th!
Things are so wonderful in our new home. It has made a dramatic difference in the twins lives and we are so grateful to have this beautiful home. Despite the challenges and having things be different than I would have expected before giving birth to preemies, I feel extremely blessed. I cling to every little thing they *can* do and look forward to all the things they will surprise us with as time goes on. They are truly miracles and continue to amaze us every day!
4 comments:
He's so cute!! Nothing can stop you EJ!
Hey Steph
LOng time no talk. Congrats on the house. You guys deserve it! I'm glad to see the kids doing well. Call me sometime!
Erika
I am so happy for you guys Steph!
Your transition sounds SO much simpler than ours is turning out to be. I have spent most of the night hole punching to create Hallie's binder in anticipation of our IEP meeting next week. I've also become somewhat of a lay expert in IDEA 2004 and the circuit court cases revolving around the issue of Least Restrictive Environment (as well as the Gaskin Settlement here in PA concerning the violation of LRE). I am now gearing up for establishing how a reverse inclusion program for 3 hours a day 3 days a week with non-individualized therapy (for most of this time) in a mixed classroom of 3-5 year olds where typical peers attend full days (six hours) five days a week does NOT come remotely close to constituting fulfillment of a Free and Appropriate Public Education (FAPE) in an LRE setting. I don't think it's a real hard argument to make, but I am sure that our MAWA (the outsourcing agency that handles 3-5 in PA) will try to establish otherwise. We've already been talking to advocates and lawyers, but are hoping that we can get this done without disputing the IEP and taking this thing to mediation or due process. We don't have the money for due process (though we would find it somehow, probably by drawing on home equity which we still have a little left of) but it's Hallie's future that's at stake. Anyway, I do hope you fulfill your dreams of becoming a lawyer who handles disability rights; the world can use more of them, and more of them who have advocated from their heart and not just as a matter of legal justice (though this is of course important, too). If I were younger I'd go back to school and do this myself, but sadly we kind of need my salary and such!
Post a Comment