Update, May 2012

Madison’s annual IEP was just completed, so I felt like it was a good time to finally get an update posted.

It is with a heavy, but confident and happy heart that we have decided to pull Madison from our neighborhood school. We promised ourselves the only way we would ever do that is if we found an AMAZING program somewhere else. Well, we found that program, and it’s only about ten minutes away. This particular program has actually been there all along, but it is at this time that we feel Madison will get the most benefit from it and we are getting excited for her new adventure!

As many of you know, we decided to have Madison “fully included” in our neighborhood school when she started Kindergarten. Having a child with Madison’s challenges fully included in a typical classroom is an amazing feat, and is incredibly challenging. It takes a massive team of people to pull it off, and we are so grateful for all of the people who have tried to make the last three years possible. However, we are exhausted by the challenges it has imposed on us. I think Madison is exhausted, too. She has done SO well in this environment, but I think it is a cause for a lot of her frustration, especially as she grows and matures.

In a way, we felt like we were giving up when we made this decision. We so strongly believed in having her included in our neighborhood school (which we can see from our front yard!) and felt like she deserved to be there. She deserved to go to school with her sister, to walk to school with everyone else, and to be with the people who are in her community. Well, we still believe all that, but reality is a lot different from our little dream. People tried so hard to make it work for her, but “full inclusion” is not a widely accepted idea and we FELT that. From the conversations we caught wind of (“why is she even at this school?”) to the lack of support from what became a very LARGE school... We could have forged ahead. Madison could have continued and probably have been fine. But we are tired. She is tired. And we are searching for a place where people might understand her better. A smaller place where there might be more acceptance. We hope and pray dearly that we have found that place for her.

What we DO know is that there is an amazing 2^nd/3^rd grade teacher who is going to have an amazing student next year! Madison is going to be in an “LH” (learning handicapped) class (AKA “Special-Day Class) at a school about ten minutes down the road. Within that school, she will be mainstreamed with the other kids as much as possible, and she will still have a full-time aide to assist her. Interestingly, as far as I could tell, she will be the only child who has physically disabilities in that classroom. The teacher is a kind but firm, calm but energetic man. When I walked into his classroom to observe the program, the first thing I felt was at peace. I felt an incredible calmness, but at the same time, I saw a very active classroom with kids being very challenged. Walking into this class, you would have no idea that it was a “special” class. It felt like any other classroom, and that was incredibly appealing. The only thing really special about it was the class size. Madison will be going from a class of 32 to a class of about 16. That was a HUGE factor in our decision.

So besides sharing my obviously emotionally-charged thoughts on inclusion, I must share the amazing things Madison has been up to over the last year.

The kid has started to walk, and the kid won’t shut up! Oh, how I have longed to say those words. It is a beautiful, beautiful thing. But, at the same time, it is SO painful. Yes, she can walk now. But the longer she walks and the taller she gets, the harder she falls. People think I am CRAZY when I don’t react to all of her falls. We are just used to it. She is just used to it. Nothing seems to hurt her. We believe it is a combination of high pain tolerance and that beautiful low muscle-tone that make her flop ever-so-fluidly to the ground. And she literally crumbles. She can be standing completely upright at one moment and then be all the way to the ground in half a second. But through all of these falls (seriously – at least 100 a day), she will NOT give up on walking. We were SO worried she might start to give up on walking once she got her wheelchair, but we struggle to even keep her in that darn chair! I would say she walks INDEPENDENTLY at least 50% of the time now. The other 50% would be a combination of her getting around in her walker, her wheelchair, and crawling. And for the most part, we leave her “mode of transport” up to her. However she wants to get somewhere, we generally let her. The moment we try to impose how WE want her to move, she kind of freaks out. This becomes incredibly challenging at times, but it seems like we have all found some good compromises…

Besides her HUGE gain in motor skills, her speech has increased dramatically! Just like those little toddlers you know – once they start walking, they start talking! Though it has been SO delayed, Madison is following a very typical timeline of development… She is now speaking in full sentences, and most people can understand what she is saying most of the time. She still shocks me most mornings – she’ll come WALKING down the hall to me and say something like “Good Morning, momma. How are you today?” or (one of my favorites)… “what’s the plan for today?” Just within the last few months, she has begun starting conversations on her own, commenting on things she sees, asking questions about what’s going on, telling us about her day. It is truly, truly incredible. We have the honor and pleasure of witnessing a little miracle every single day. God has truly blessed us with this little wonder and we are forever grateful for His hand in her life.