Friday, August 14, 2009

Woefully behind

I am woefully behind updating Lily Bean's blog. In June, Lily completed her first year of Developmental Preschool! She had a fantastic year and we were so blessed to have the teachers and staff that we did. Toward the end of the year, I started talking with the program administrator about developing some parent groups. I began an email group right at the end of the year, and I hope to expand on that, hopefully into a PTA of sorts specifically for the developmental preschool (not just the school at-large).

School starts up in about three weeks, so I'm really looking forward to this. Also exciting is that they are piloting an inclusion program this year! Hank is going to get to go to school with Lily two days per week! I'm am absolutely over the moon about this! I've wanted an inclusion program for them since I knew Lily would be in special ed, but it would've meant moving ot a different school district. We got really lucky with our program admin because he really believes whole-heartedly in inclusion. He says, "Children who learn together, learn to live together." I couldn't agree more. I can't wait to work with him more on some projects toward this goal.

We are having a revision IEP meeting in a couple weeks. We knew that Lily would meet some of her IEP goals over the summer doing ABA therapy, and we were right!!! ABA has been absolutely INCREDIBLE for Lily. She consistently requests items from a field of two using PECS, and we're beginning to expand to a field of three. Soon, we hope to generalize that so she can request items wherever she is. Also, she has learned how to point!! When we began this program back it May, Lily did not have any of the fine motor skills to even form a pointed finger. But look at her now!!!!


We had four year old portraits done of the twins by my dear friend Susan of Whimsical Photo Design. Susan is a friend from Husky Band days, and we'd lost touch over the years. We recently reconnected on Facebook, and when I learned she was a photographer, I was thrilled to have her come up & take these pictures of the kids. They are absolutely stunning, and I am just over the moon to have had her come take them.







Finally, and perhaps most exciting is that Lily has been enjoying hippotherapy since the beginning of June. We travel out to Little Bit Riding Center every week where Lily rides a horse (!!!) for an hour at a time. It is absolutely amazing to see her do this! Lily has incredibly low muscle tone, and we jokingly call her "noodle girl" or "rubber band girl" because she can be so floppy. So to see her sit up so tall, and so strong on the back of a horse is enough to bring this mommy to tears. The video below is from Lily's ASSESSMENT before we ever began therapy. This was her first time EVER on a horse:


Since starting hippotherapy, Lily now climbs up into her highchair unassisted. Climbs onto the couch unassisted. Crawls up the stairs nearly unassisted. Gets down from her carseat unassisted. Gets out of her stroller nearly unassisted. She can (and does!) climb into the bath tub when it's empty, and we're working on shaping that into functional climbing into the tub. Her gross motor development since starting hippotherapy is absolutely astounding. Not only can she do all these things, she does them with complete confidence. And conviction. Oh, did I mention she climbs up on a kitchen chair, and then onto the ktichen table?? Oh yeah, she does that regularly if the chairs aren't pushed in!!!

It has really, really changed our life, and Lily's life for the better. The biggest downside? It's expensive. In fact, ALL of Lily's therapies are expensive. We're fortuante that we have incredible isnurance that covers a portion of Lily's ABA therapy, but all told, at the end of the month we're generally out $1,200 or more for all of her various therapies and medications. (Vigabatrin is not yet FDA approved so we still have to order it from Canada & pay out of pocket for it. A drag, but worth it to see how beneficial it has been.)

2 comments:

Sophie's Story by Elaine said...

That is great that ABA is working so well. We are actually going to start Sophie back into ABA this school year. Ever since the surgery, her attention span is zilch.

That is great news that they have started an inclusion program. That is how Sophie's preschool is and I can't imagine it any other way. I think all of the kids benefit greatly from it so hopefully this pilot program will take off.

Wow...I had no idea hippotherapy could do so much. I am definitely going to look into that for Sophie.

Thanks for the update...you are never far from my thoughts and it is so wonderful to read about the new things that Lily is doing.

baby trevor's mommy said...

I am SUCH an advocate of inclusive education! I've watched Trevy as he's connected with his siblings...and just deeply believe it's a motivator for him! I think Lily will just blossom even more!

The pictures are SO beautiful!

I think whoever developed the hippo therapy idea is brillant!

...danielle