Tuesday, September 14, 2010


August has been a busy month. First D had Botox injections in his legs and wrist on the 17th (post below). It took about 2 weeks to really kick in, but we have seen good improvements in his muscle tone. He is much, much looser to stretch. He is standing on flat feet instead of his tippy-toes. He is doing more as he sees what his body can do now. More pulling to stand (as he has a stronger base of support with flat feet) and more walking holding hands or in his walker. He still has a scissor gait, though it is reduced due to the Botox injections in his abductors. He just started wearing a hip orthotic called a SWASH (I think that is what it's called). It's like a rock climbing harness that goes around his waist and has straps around his thighs. It helps keep his hips externally rotated. He wears it over his pants. I will take a picture of it. It has made a big difference when he is wearing it for walking with a straight gait and when he sits in it (like on a bench or chair) he is very stable, too. When we did the Botox we also had a hip x-ray done and his hips are fine for now. But this orthotic will also help keep his hips in a good position as he grows.

On the 29th, the twins had their 3rd birthday! We had a great party with a bunch of kiddos and their parents. We rented a bounce house, which was a hit. Everyone, including the adults and Drake, enjoyed bouncing. I felt the bounce house was a great equalizer actually, as everyone is crawling around and falling over in there. But, man, can't believe my babies are 3!

Lucy started her preschool on the 23rd. She loves it! It's a Montessori program. The kids are always cooking and cleaning and doing art projects and riding bikes. It's been wonderful for her.

On the 30th, we got to tour the school where Drake was placed through his IEP. It's a CDC housed in a public elementary school. It's in a portable in the back, with a poured cement concrete playground with no play structure. I tried to keep an open mind as I walked into the classroom. Kept reminding myself it's the people that make a place. The people inside were great. Within this inclusion classroom was a really nice special ed teacher that has 4 special needs kiddos in the class and a general ed teacher that has 12 typical kids in the class. But there was zero diversity, every kid was African American and low-income. And none of the special needs kids had a physically disability. They all walked and talked great, but had cognitive or behavioral issues. And the class is only from 8:30 am to 11 am. So, 2.5 hours a day. And the school is not in a convenient location to our house, especially during the morning commute.

With all these things stacked against it, we decided to turn down the IEP. I found a wonderful private preschool that will take Drake 3 full days a week and the other 2 days he will be home with a nanny and going to therapy appointments. This school has one other kiddo in the class with a physical disability, a little 4 year old girl who walks independently, but with a poor gait and wears AFOs as well. The school said when she started she was crawling and then walked with a walker and then independently walked just a few months ago. So they have the experience with kidddos who need extra help getting around.

Today is Drake's first day there! He is so excited. It's been so hard for him to watch Lucy go to school since the 23rd. He was bursting with excitement this morning. Had his monkey lunchbox all ready to go.

So, a busy month and lots of changes, but I am feeling good about it all for the first time in a long time.


GingerB said...

Oh, little Drake! I bet that hurts to see his sister go off to school. I don't know what I'll do at age three but I think it is possible I'll keep Hannah in her private day care / preschool and not join the school system until I have to, because I'm not sure what fit we'll get with the inclusion program. My vision for Hannah has her focusing on who she is on the inside, and I'm afraid a smart girl with a limp amongst kids with cognitive issues and no braces won't be the right mix, but then again, I really don't know anything yet. So I'll watch your story unfold with interest. And I love hearing your Botox details because we may be headed there after next month's bout with constraint therapy. How exciting that he has gotten his feet down flat! That is excellent news!

Katy said...

Sounds like you've found the right fit for your family. Charlie isn't in inclusion yet, but I already feel like his class is a nice mix of varying abilities and races. Next year he'll get to spend some time with the kids who come for Head Start and that will change things even more. We are lucky to have such a great public school by our house.

Hopeful Mother said...

I think the IEP stuff would be hard with one child, but it especially hard when that one is a twin. We wish that our boys could go to preschool together, but don't know if that will ever happen.

Our area is very small so there are limited options for a "special" child who wants to be placed with his "typical" brother, especially when we are not low-income, so we don't qualify for most of the centers where they are already doing inclusion programs.

Good for you for figuring out what is best for Drake and going for it. And keep in mind that next year may be a different story altogether depending how Drake develops and what is available to you.

Amy said...

Hi Kelly,

Not related to this post--but I don't have an email contact for you...

Elena's bike is a Triton Ultimate three wheeled Cruiser. Triton makes several Cruiser models--we picked the Ultimate b/c it was pink. It's expensive (~$300).

WE LOVE IT. Toys R Us said they would take a full refund if I brought the box, unopened, to the store and had them assemble it. We test drove it in the store. It fits in the "trunk" of our Suburu Forester, with both carseats still in their place in the back seats. We use it on the "smallest" setting, and it's a little too big for her. We put a towel behind her back, and I made pedal blocks out of packing foam (not styrofoam, that falls apart) and toilet paper roll hangers (see E's blog for details). As for the foot straps--I bought a huge pack of velcro cable straps (for computer cords and such) and they work GREAT. No tying, just wrap and stick. Easy peasy lemon squeezy.