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, November 12, 2008

Question of the day

Tricia asked: First, how is Angela feeling? Second, as a mom to a one year old with Down syndrome, I would like to know what kind of advice would you give? Angela just amazes me at everything she has accomplished. She's such a beautiful young lady, and an amazing athelete. You seem to have so much knowledge, and I enjoy reading and learning from your blog and posts at downsyn... so now, can you teach me more?

Thanks for Asking how Angela is doing. She was able to go back to school today, and since I didn't hear anything I'm assuming everything went just fine. She came home talking about the masks they're making in Art class. (remember Art? The class she HATED last year?) Tonight Dean was asking her questions about it, when she finally said, in an exasperated voice, "Dean, you'll see it tomorrow when I bring it home!" I guess she's getting back to her old self. LOL

The best advice I can give you is to never ever let anyone tell you your child can't do something. You, as the mother, know your child better than anyone. Trust your gut. Remember too that sometimes learning comes from failure. You have to allow your child to fall sometimes in order for them to succeed. This has been the hardest part for me to get school staff to see sometimes. That she will learn from peer pressure, she will learn from her mistakes (hopefully. LOL) BUT, that said, don't be afraid to advocate for your child when you know more is being asked of him than you know he's capable of. Setting a child up for failure isn't a good thing either. Parenting a child with Down Syndrome, or any other disability, is a very delicate and difficult to learn dance. But the end result will astound you.

By far the most difficult things for me to deal with while parenting Angela has been her behavioral challenges. There is no one technique that works with every kid, and many times over the years Angela's behavior has stumped even the behavior specialists. It's also the area I've had to do the most advocating for her. Both in the positive and negative. Sometimes, in order for Angela to have a positive experience in a situation, I've had to be very blunt about what COULD happen if people don't paying attention, while at the same time telling them "No, really, she can DO this!!! Just give her the chance!"

Somewhere on my blog is a post I made about a year ago. Someone asked me about keeping Angela involved in activities. When my boys were younger, I let them try whatever they wanted to try, even if I had to drive a long way to do it. (hey, where we used to live just going to the grocery store was 30 minutes one way.) If they didn't like something that was fine, but they had to finish out the season. Then they just didn't sign up for that thing again next time around. With Angela, I try to find things that I KNOW will interest her. Acting is right up her ally, since she spends so much time re-enacting all the shows she likes to watch, or the events of her day. This is her second year of SOS Players and she loves every minute of it. This is how I approach everything with her. Angela is a kid who DEMANDS independence, and I love getting her involved in these things where she IS independent, and I'm just one of the moms, sitting back and watching instead of hovering.


My name is Sarah said...

This is Joyce, Sarah's mom. I am glad Angela is feeling better. I think your answer to the question posted is very well stated. I would ditto the same for Sarah.

Jennifer said...

I ditto that too. Never underestimate what our kids can do!!!

Tricia said...

Thanks for the reply! I really appreciate the advice, and I have been feeling the same as far as her abilities go. I will not ever limit her. Bailey is just so amazing already, I wish I could see our lives a few years in the future. I can't wait to see the person she becomes.