Wednesday, November 13, 2013

Update Time

So, November and December are shaping up to be incredibly busy, in that awesome, yet slightly anxiety producing way. That said, I do want to write up a little update on Mariana's progress because, this week has been awesome.

First of all, the Buddy Walk was so wonderful. Our kids' school is just full of individuals who genuinely care about each member of our little community, and honestly, sometimes that's the best hug one can receive. We raised over 2,500.00 dollars for the DSAJ, and that was with minimal output from  yours truly. Others took our cause and ran with it, which is just so inspiring. The DSAJ is one of those organizations that I just didn't care much about when Mae was first born. I had a baby and four other kids. This was not going to be my banner cause, you know? The reality of life is that if you don't work toward something you need, you don't get it. I had a lot of God elbowing His way into my life that first year and learned so much about Mae's needs. This organization has highlighted the gift that individuals with Down syndrome are to the community. To me, that's the key to stopping the eugenics movement; showcase the dignity and there is no way to argue for the destruction. We are so blessed to have the DSAJ.

As for the actual walk, well Miss Thing did her thing, which is to say, she was contrary. Mama had it all planned out. We left the house at 10:30. Mae slept on the way. We had fun, and some lunch, took pictures with the school cheerleaders, and met up with our teammates just before the walk. Mae fell asleep in the stroller. Wait. Oops, that wasn't the plan. Okay, Mae slept the first 1/2 mile. I picked her out of the stroller, as my hooligan children splashed in the freezing ocean. It was windy, so Mariana woke up. The last little bit I placed her on the beach and called her to walk to me. She stood there. She saw the cameras and she posed. She clapped. She waved her finger in the air. She laughed. She did not walk.

Here's the benefit to having a contrary child who also has a disability; you sort of delight in their individualistic behavior. The reality, when you hit the therapy circuit, or you are first telling people about your child's condition, is that suddenly your kid becomes that disability. That is to say, the disability becomes the most remarkable thing about the child. Obviously, hey, the therapists need to do their thing, and we have great ones that do highlight Mae's personality and delight in her. However, when you hear, "Oh, they are such nice people." a million times, or, "Yes that's very typical for kids with Down syndrome." you kind of delight in the non-conformist behaviors.


Moving on. We had some big milestones hit this week. The major ones have to do with Mae's walking. We are working on getting her orthotics! This is awesome news because orthotics are a very common need, but the need for them only comes when you have a proficient walker. Given that Mariana can walk, pivot and walk in the other direction as well as step up on a very low step, like onto a mat, she is now a proficient walker. WOOOO! So far, we are hoping to get away with the minimum of a sole insert, but we'll see. 

The second big deal is that we are now able to reduce her use of the dreaded, yet slightly adorable, hip helpers. Now we are going to put super tight leggings on her for the input, but the hope is that she won't need the control to keep her stance narrow. So far taping her belly with Rock Tape is doing the trick. Unfortunately Rock Tape ain't cheap, but that's the breaks, right? I will say this for Rock Tape; it works miracles. Charlotte pulled an ab muscle and was not resting it sufficiently, so we've taped her a few times and the difference has been magical. In terms of kineseo tape, this stuff is the best. You runners go get you some!

The current focus of our lives is language. Mae can repeat just about anything. She knows how to ask to eat and she knows how to tell me "No" and "Stop". However, she doesn't label or request things like calling for Scott or one of the kids, or asking for her cup. So, we have a huge project in mind for the weekend. We're going to paint our little half-wall with chalkboard paint and hang a magnetic whiteboard as well as a strip of velcro. Then we are going to put velcro on some play-kitchen items and print pictures of them. Then we'll work on having her go get them from the pictures. We'll also being hanging pictures of people and requesting that she retrieve those. It's all very complicated sounding, and it is. The deal is that she has this youngest thing working against her because she has no need to request items. She's got all these big people to get her stuff. So, while she might say things like "Caterpillar", she won't say, "Down" to get down. I, for one, am not looking forward to these new restrictions on granting her what she wants. More work for Mae = more work for Mom. Here's hoping she's a quick study, yo.

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