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!"

Friday, September 21, 2007

There are days....

I know there are several parents reading here who are brand new to the world of DS. Please know that Angela's behavioral issues are NOT typical of DS. We don't know why Angela's behavior is the way it is, but there is a significant family history of psychiatric and behavioral disorders so it's really not all that surprising. Surprising or not, the combination of that history and DS sucks!

There are days when I just don't get IT! I don't get what the lesson is. Surely there is a lesson in the happenings of the day. If there isn't a lesson, then WHAT'S THE POINT????? What is the POINT of my child's aggression. What is the POINT of the stress and strain? What is the POINT of this day happening in the first place?

UGH!!! Needless to say, I'm at my wits end today. Angela's behavior has been pretty good for the most part for a couple of months. Although whenever we see one doctor in particular she never fails to display her absolute WORST behavior. I'm glad she chooses that doctor in particular because THAT doctor is the one who gets us stuff (read services.)

Today is a day where I watch the clock counting the hours and minutes until bedtime. Angela doesn't sleep very well, so she takes medication to help her sleep at night. She's usually out within about 30-60 minutes of taking it so I know that if I can hold out until 7:00 she'll soon be asleep. I hate that I can't wait for my child to go to sleep. I don't think that's what parenting is about. Yes, we all have our days, but I'm feeling that way EVERY day.

I'm not getting any breaks these days either. I only have a few hours of PCA available, and the couple people I have to do it aren't available when I need them. Time to find more people. In January we'll have a new neuropsychiatric assessment done, which will get us additional hours, making it easier to find a body to do the job. We'll also be able to get an in-home behavioral specialist who will helps us learn how to deal with the issues at hand. Right now I just feel like I'm drowning.

On a good note, so far this year at school she's been a model student. This is a HUGE change from last year when the behavioral specialists were having to follow her around and she couldn't manage staying with one subject or activity longer than 10 minutes. We did find out she HATES Spanish though! Our district started a charter program and her building is Spanish and Science. Yeah...lets work with English first! Anyway, she'll no longer be participating in Spanish. I'm sure the little girl who has been sitting next to her and getting her hair pulled will be thrilled.

If you're a praying person, please pray for God to calm Angela. Please pray for guidance for those of us who have to deal with the behaviors. The guidance could be insight into what's happening in her mind, or just giving us the words to say and actions to do to address each incident.

After the long grueling afternoon of Angela screaming, swearing, kicking, spitting and hitting, she has now isolated herself in her room with a movie. She came out long enough for dinner then headed back. I guess we all need a break.

1 comment:

Kathie Brinkman said...

I'm sorry. I'll be praying for you. Sounds like she needs to burn off some steam swimming today. LOL I'll be there right after 11:00am.