Friday, July 22, 2016

We Are Their BEST Teachers and Advocates

I've debated for quite some time now whether or not to homeschool Bubby. There are so many aspects that worry me, whether I can organize myself to do it effectively without taking away from the other kids, will I have the resources at hand to help physically, emotionally, socially and academically, the list goes on. It's every special needs parent's load to carry and no matter what that just never really goes away.

It wasn't until I received the end of the school year 'gift' of a picture of Bubby at school.
I knew that he never laughed much for them, but I thought that it was his reserved nature. Looking at this picture it all became clear. He was sad, withdrawn and so terribly unhappy. I guess I should have seen the signs, how grumpy he was coming home, how disconnected and tired. I was battling the conflicting messages I was receiving from him teachers and aides, they felt he was adjusting much better this year, but on reflection I wonder if it just wasn't more of his being 'consigned to his fate' as Keila so often likes to say as of late. It was taking more work to draw him out even on the weekends at home, a certain sullenness that must have been hard to bear as a child - especially a child with no words express it.

So much of my summer has been spent researching, asking people, even attending part of the AFHE convention on homeschooling special needs. I mentioned it to all his therapists and they watched him carefully over the first few weeks of summer. Just three weeks ago all three of my therapists have said they've seen a change in him, a lightening up, a willingness to learn and engage. I saw it too, how much eye contact he would make, how playful he was again and his clear attempts at communicating his needs. It was as if he woke out of a depression of sorts and with it has come a growth that is leaps and bounds more than any IEP can truly measure. Despite my reservations it was clear to everyone that he would learn more and be happier here at home. My anxieties could not stand in the way of what was best for him, besides I have so often stated that with God all things are possible and now I simply had to put that faith to the test.

I love watching him listen to his music. His face takes on an expression depending on the mood and his movements have a certain grace that make me smile. He feels the music deeply. I've tried many times to catch him on my camera, but he freezes the moment he sees it so sadly these are the only ones I've managed that really capture how much music affects him.

In this next one you see him anticipating the change in music. He just makes me smile!

With all this, we decided to enroll him in music therapy. It seemed pretty crazy for the 5 of us to show up in a tiny room to bang on drums and sing with two other kids with special needs. It was a little harried at first but somehow my typical three have been good models for the others - especially tiny Pumpkin who loves to participate. Bubby has also settled down and often gets off my lap to jump and dance enthusiastically. I've learned how rhythm helps to calm many of the children and helps to 'order' the brain. It's all things I can add to my growing curriculum designed specifically for Bubby.

He has begun to want to play with others which is so encouraging. For the longest time we had a set of Frisbees that Isaac and I would throw to each other when the weather was cooler. Bubby must have remembered and often fished out a Tupperware lid and would throw it to the best of his ability. Once he figured out that if he gave us a turn he'd have a playmate he was all giggles and smiles. I passed it off to Pumpkin one day and though anxious as the slower pace of his sister, he allowed us all to take turns. When I had to leave to help one of the kiddos, they two continued the fun. This is what I captured on the camera.

Darned if all my kiddos aren't just so self conscious around a camera. She was laughing as loud as he was, if only I could have recorded without her seeing it!

It's not just with siblings I've seen this change, but also with other kids. One of our therapists told me of a special needs storytime at the Agave Library just 12 mins from our home. It was perfect, a smaller group with dimmer lighting and quietier place full of sensory toys, a visual calender of each activity they would do and a predictability that had Bubby at home quickly. At the end there is always some time to play with toys and friends and the circular sensory pads were his favorite. He'd lay them out like at physical therapy and jump from one to the next. This caught on with another typical kiddo who'd follow along and together, they'd laugh and clap for each other. It was all good until the other boy decided he wanted to move a pad. Bubby firmly pushed his hands away and then collected all his pads to play in another corner of the room. I reminded him to share and he grudgingly relinquished one for this little friend.

In addition I began researching water therapy. While Bubby does well with many textures, our main concern now is how he integrates all of this in doing a task. Our minds easily weed out unnecessary info like the feel of the breeze while still maintaining our focus on a task. We didn't know how well Bubby was doing with this and since water therapy gives a wealth of sensory feed back, it seemed worth the investment for an above ground pool for the whole family. Our physical therapist loaned us her large flotation device (fondly named Fishy) which Bubby loves to climb on and ride. It's working his core, arms and helping him with anticipating movement as he dips and floats. I often have him play other games like catching and tossing rings to each other or simply jumping and stopping according to instructions. It's been great fun for all of us and lots of learning for him.

He's still quite a monkey, he's figured out how the baby proofing stuff works and taught his sister as well! Our island has become their favorite place to hid and obviously everything inside had to go!
The other things that makes all of this homeschooling possible is our Kera Forrest, our newest respite worker! We were terribly sad to lose Ms. Marni, but so happy to have Kera. Incidentally Kera is Marni's sister. The transition has been a breeze thankfully. He was gigging and playing with her this morning which will make her job so much easier. I'm hoping to develop a learning schedule of sorts for her to work with him. Interspersed with doing Geminii, shapes and colors there will be lots of play and games all geared to helping him in all areas of therapies. Weekly therapies and almost daily visits with Kera in addition to our own work makes for quite a team. We are so grateful for our blessings and resources!
With all of this I can't wait to see how he blooms and grows this next year. We grow right along with him! I remember when Isaac was first born how terrified I was about being a parent. Time and experience have taught me that we are inspired as we desired to help these little beings in our care because we love them so much. We really can be their best teachers and advocates as we trust that inspiration/instinct/gut response that we feel they need and find the courage to push for it. Doors open along the way, the team grows and life is richer for it!