I freqently tell people about the amazing tracheostomy support group I belong to. The moms (and a few dads and guys) on there are amazing! I have learned SO much from them over the years that I've been a member. One thing is about navigating the IEP (Individualized Education Plan) process with a child with a trach. Until hearing it from them I didn't realize that the school system is legally is obligated to provide an eduction to attempt to catch kids with delays up to their peers (most trached kids will score as delayed in speech/communication), and for a child with a trach that means providing a one-on-one nurse to ensure their safety while they attend school. I'd heard terrible stories about how difficult it can be to get the services that your child needs and having a trach just complicates things. So I'd been expecting the process to be painful but it wasn't. Well, we were there for hours and didn't finish so I guess it wasn't 100% pain free, but it was mostly pain free.
Ainsley has been working with a birth-to-three center since she was 4 months old, receiving home-visit therapy. She started attending school there in the fall when she was not quite 2. They helped us start the process of switching to Seattle Public Schools and preparing us for the IEP back in May. Due to Ainsley's multiple special needs and what I'd heard I was very concerned that it might not work out well for us.
Today was the long awaited meeting. I had a list of goals prepared and the educator's IEP draft had almost all the same goals plus a few others. It's about 15 pages so I'll spare you the details but Ainsley will be receiving an hour a week of PT, an hour of speech and 1/2 hour of fine motor (less than the hour she does currently but in my mind the classroom activities will more than replace that). They even had the nurse present who they hired to cover 2 of the days (we're providing our own private duty nurse the other two days). And I LIKED him! (Yes it's a him.) He is going to come train at our home and shadow our nurse for a day before he cares for Ainsley alone. All in all it was GREAT! And I'm looking forward to the change. I think it's going to be good for Ainsley because they incorporate a lot of learning into the classroom environment and attending twice as often (4 days a week) is bound to increase her progress. We will miss the birth-to-three center and all it's wonderful dedicated staff, therapists and educators but I believe we're in good hands.
And she starts the day after her third birthday, October 19th! I feel a little sad about preparing for my baby girl to being going off into the world without me but that's the end goal of parenting, right?! It's going to be okay, right? Sure it will. Faith. Leap of....or something. Here we go...jump!
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So glad the transition to public school is going well so far. Your post brought back so many memories. I had also heard all kinds of horror stories about moving from the warm and fuzzy Early Intervention into the cold and under-funded public school system. Aaron was the first child with a trach to enter our local school district, but we all worked together and all went smoothly. My boys are now in high school and I'm still very happy with the public education they are receiving. There are always challenges, but I've found if you are nice and reasonable and willing to work with the school district, you get a lot more results then from being one of those "mother's from hell." Oh and also glad you've found the message board helpful:-)
ReplyDeleteI'm so happy to hear all went well! I had the same fears and expectations over here when we just went through the same transition. And I was also pleasantly surprised at the care and attention they spent on Harlie and making sure she got what she needed. It is just so heartwarming to learn that other people care about our kids and want them to do as well as they can. I'm excited to see what Ainsley learns and how she will progress in school.
ReplyDeleteGreat news Susan. Glad you are off to a good start with your school district. I can't wait to hear about Ainsley's take on going to school :)
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