Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, May 19, 2008

Changes and stuff

I know that some of you are thinking I'm going to write about "those" kinds of changes, but I'm not. In fact, "changes" is probably the wrong word. If the title bar had more space I'd probably say something along the lines of "We're doing a bunch of stuff around here and it feels like we're making all kinds of changes and spending lots of money to do them" But no...there isn't that kind of room in the title box.

Last summer Angela was able to get a new waiver that allows us to do some things, and get some things that will not only benefit Angela, but also allow Dean and I to learn some better skills when it comes to dealing with the behavioral issues. Half of her waiver went into effect in July, but the other half had to wait until we had some other testing and documentation done, and it just went into effect April 1st. Then it had to sit on my desk for a couple of weeks (ok, almost 4) while I figured out the budget. Ummm...those who know me also know that "numbers" and "budgets" are against my religion. With everything done, submitted, and approved by the Gods at the county and state level, we're finally able to do some things we've really been wanting to do!

The first priority was getting the back yard fenced. Angela is learning new skills every day, and her favorite one is called "Spying on the neighbors". (Now that spring is here, and the trees are getting their leaves this will be more difficult to do.) Now, Angela isn't the little old lady across the street who peeks out her curtains every time you make a move. No, Angela is the little girl at the top of the hill, standing in the picture window, watching all the neighbors garage doors. You see, an open garage door means the neighbors are HOME, her mind...means they're available to play! Oh, and she doesn't want them to play at our house, because our house is boring. She wants to play at THEIR house. She also wants to see what food and drinks they have in their fridge, and what shows are on their TV. I think I've sufficiently warned all the neighbors, but that doesn't stop Angela from just taking off to go visiting! As always she saves her adventures for when I'm in the shower or otherwise indisposed, which gives her a several minute head start, and me a heart attack when I discover she's gone!

On Thursday the "fence guys" will be here to set the posts for the fence, then they'll come back on Monday or Tuesday to put the actual fence up. Let me just say I CAN NOT WAIT! The basement door will open directly into the fenced area. Angela will be able to go in and out at her will, while the front door will either remain locked, or I'm putting one of those beeper thingies on it so when it opens it'll sound an alarm. Angela doesn't like noises like that so I think she'll leave the door alone. I'm still working on Dean about filling in that *^$# pond though. I don't think he understands the anxiety and stress it causes me in the summertime. When Angela isn't looking like she's going to fall in it, she's throwing all the dog toys, doll strollers, or what landscaping rocks she can lift into the water. The bigger the "Sploosh!" the better, right? UGH! Just the thought of that pond raises my blood pressure. A good thing though, if Angela DID fall in, thanks to all the swimming lessons she had she won't drown. Might hit her head on a rock or 5 THEN get knocked out, but if it were just the water to worry about there wouldn't be an issue.

The next thing on my list is Angela's physical activity for the summer. She's very quickly gaining weight and this is just not ok with me. Half of her stamina issues are because of the rapid weight gain, some of which can't be helped because it's caused by her meds. But, sitting in front of the T.V. all summer won't help either! She'll be swimming 3 mornings per week, and we have a Y membership so she can do stuff there as well, but I don't always want to be inside. So I was on a quest to find her a bike that she can ride. There are several options of adaptive bikes available, but they're extremely expensive (we're talking several THOUSAND dollars!) Also, leave it to my kid, but she has managed to tip over all the adaptive bikes she's ridden. Although I spent several years planning to have Angela do a "Loose Those Training Wheels" bike camp, the reality is, given her weakened left side, she will likely never have the balance needed to ride a two wheeled bike. Then there is the whole issue of TIA's. We know A) she needs a low center of gravity to prevent tippage B) it needs to be VERY easy to pedal, or we might as well not get the darned thing C) She needs support for her back, as her stroke has made her left side weak and it collapses when she's tired. C) it must be three wheeled.

Tonight we were supposed to have track practice, but it was too cold and damp for me to be standing around in the wind (it was a lovely 45 degrees...blech!) so Angela and I headed to Carz Bike Shop which was recommended to me by my friend Kathy. Thanks to the internet, I was pretty sure what we were going to get before we even went to the shop. There are only two distributors of this particular bike, and while Cars Bike Shop isn't exactly close, it's closer than the other one in Rochester!

Anyway, we tried out the bike, a Sun Cycle EZ3, which is a recumbent trike, and it's perfect! They are going to make some minor changes to it for her (and me!), like adding a hand brake for me in the back so I have some control. Toe clips to keep those pesky feet on the pedals. Also, because it's a recumbent, the chain runs along the frame of the bike, right at Angela's inner thigh level, so they're going to make a chain guard for it. They will also change the hand brake levers that aren't waaaaay to big for Angela's tiny hands. Not that I expect her to USE them. LOL

As we were messing around in the parking lot, I began to wonder what the the world Angela has been doing in Adaptive PE in school. I know she's been riding an adaptive bike, but clearly not very much,(and no, I don't expect her to be doing this every day, I just want to be a fly on the wall to see how she does it!) as she's still at the developmental stage where they do nothing but watch their front tire go round! But this bike was light enough for me to EASILY push with one had and walk along side her so she could just practice steering and not worry about pedaling. Within about 1/2 hr she was doing a much better job of looking ahead if I gave her a target to look at.

While there are pictures on the net of the bike, I'm not going to post any until we have it, which will be sometime next week. Angela is VERY excited to get her new bike!

Next up on the agenda? Registration for Camp!

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