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!"

Wednesday, October 22, 2008


Well, we've been working on this for over a year, but yesterday it FINALLY happened! The behavior specialist came to visit! WHOO HOO!

First we went over all the areas in Angela's life where behavior becomes a problem and/or interferes with her making progress in learning or independent living skills. Umm...that part took about an hour. LOL Actually, Angela's been doing really well for several months, but there are still those days. And yes, everyone has them, but until you've seen Angela in action, you have no idea just what "one of those days" can be like. I had a very close relative once comment "It's amazing how one little girl can run a household." This ticked me off to no end. First of all, that person sees Angela only a couple times of year at best, and secondly, Angela isn't trying to "control" a household. Angela doesn't process thins the same way another child her age does...or even a child much younger than her. She can't say, "You know, I really hate this store and I want to leave....NOW!" If she could, we'd leave immediately because it would be fair warning that a blow-up is about to ensue. Instead, Angela just blows up, which IS her way of saying, "This is too much for me!" We don't know why she attacks little kids, we just know that she does. We also know she targets kids who are weaker than her. For example, a child with CP who she might be able to tip over easily. Many of her actions are totally unprovolked, leaving us all on edge.

Also, talking with the specialist yesterday made me realize how much we have to think ahead with anything we do with her. I mean things like, if I'm going to be telling her it's time to take a shower, I have to start prepping ahead of time for the reaction that she might have. She COULD go to the shower nicely, and if she does I better have everything ready. She COULD do the "flop-n-drop", in which case I have to have an alternative way to handle her already in my head. Say the wrong thing, the wrong way, and the shower won't be happening. She COULD get combative and start whipping remote controls around the room, or pushing electronics off the shelf, so just in case...before I even bring up the subject...I will walk around the room doing damage prevention! (ei, gathering the remotes, protecting the electronics, putting vulnerable Roman in his crate and the other dogs downstairs.) All before she even knows I'm going to be asking her to do something. Unfortunately, there's no way to predict the kind of reaction she's going to get. It doesn't matter if she knew two hours ago that "After you do (insert activity) it'll be time to take a shower." Actually, with Angela, this often makes the problem worse, as it intensifies her anxiety over whatever the thing is you want her to do. Confusing? TELL ME ABOUT IT!!!!!!

Next she told us how they develop a behavior plan. First, the observe both home and school. They work with school to learn how they implement Angela's umteen page behavior plan, and what strategies work there. Then they figure out what are her triggers at home, and how to have continuity in behavior management between school and home, and figure out what things are used at school that may not work as well at home, etc. Then they'll come up with a plan and work with her awhile on it, and tweak what needs to be tweaked, eventually training us and her support staff (PCA's) how to implement it as well.

But there is MORE! Because of Angela's age, and her disability, they ALSO work in independent living skills. As with most kids Angela is more likely to have a behavior problem with one of her parents than anyone else. So, lets use that shower for an example again. Angela spends so much time avoiding the shower, and displaying very difficult behavior while taking one, or trying to bargain for a bath instead, or just plain trying to get out of it, that it's very difficult to actually teach her the SKILLS she needs to eventually do this task by herself. Having an outsider teach her the skills is sometimes more productive. They also have proven methods for teaching the skills to a kid who has trouble learning the stuff, not to mention tools to adapt some things that are difficult for her because of her gross or fine motor limitations.

One thing I did ask is if I'm nuts. No...really...I asked that. Angela is 12, and in the house is actually quite independent. If she has clothes that don't have fasteners, (no buttons, zippers, snaps or laces.) She can get dressed herself. She can cook a couple different items, and every week is learning one more thing to cook. (all microwave stuff, no stove/oven.) As I mentioned in a previous post, this is the first year she's getting off the bus without the driving needing to SEE me, instead just dropping her off like every other kid.

So, I realized I have only about 6 or 7 years to teach her how to be alone in the house. I know...sounds scary, doesn't it? But, when she comes home from school, she's perfectly capable of doing what other 12 years old kids often do when they get home. Come in, take off her stuff, get a snack, then go turn on the TV! LOL Last spring we had the incident where I broke my wrist, and everyone was scrambling to find someone to meet her bus. Finally my brother in law answered the call and drove the hour here to do that. But now, she's old enough and capable enough, so we need to teach her.

We'll start out by developing the habits of what she needs to do when she comes home. (come in the house, drop shoes, hang up jacket, read a simple note on the table that says where mom is, get a snack, go watch TV.) Once we know she's got all this down and is RELIABLE about doing it, then I'll start not being here the first 5-10 minutes after she gets home, gradually lengthening the amount of time she's alone, working up to just an hour or...maybe 2 if I'm lucky...

Anyway, our visit was very nice, and I loved hearing the specialists impression of what she thinks Angela is capable of doing. She said I'm NOT nuts! That this is a realistic goal for Angela RIGHT NOW. Not years down the road, but right now. That really it won't take long for her to reach this goal. (probably just a couple weeks) She also says she has several clients who are "Angela, but at 19 or 20 years old" who are living in assisted living programs where they just have someone checking on them once or twice a day, but are otherwise independent. That will SO be Angela in just a few years!


datri said...

Leah, you have no idea how much hope this gives me. Thank you.

AZmomto8 said...

Oh gosh, I feel for you, I know this child, she lives with us!

It was providence that I read this today, my 7 almost 8 year old daughter Meghan is driving me bonkers. She is combative and threw a major hissy fit at the audiologists yeaterday. Since we adopted her two sisters, she is reverting back to behaviors I thought were yesterdays news.

I thought about a behavioral specialist to come one help us with these behaviors because truly I am weary of dealing with them and have ran out of ideas. She has avoidance tactics when it comes to therapy too, and it hinders her progress. I guess this is not uncommon with our kids with DS.

I will ask about a therapist for Meghan.

Tamara said...

Oh - I so want to hear how they teach her the independent living stuff!!! I need to start working on Shawen staying by himself. I think he can do it too - but it's just figuring out what could go wrong!!