Saturday, June 14, 2008

One of the challenges of Down syndrome?

My daughter doesn't understand social boundaries. She doesn't pick up on body or verbal cues that tell us when a behavior is welcome or not. Her IEP has a Behavior Plan that will address this, but that IEP will not help me this summer. As a mom, I am not quite sure how to handle things - such as what happened yesterday.

At the neighborhood pool, The Love Magnet found another little girl wearing the same swimsuit that she was. The two little girls were excited to see that they looked like twins. However, the novelty of discovery soon wore off for the other little girl.....but not for my daughter.

"You have my swimsuit!", my daughter repeated over and over, sometimes stumbling over the syllables. She threw an arm around the little girl and yelled across the pool "MOM! She have my swimsuit! My new best friend!" This was announced over and over. The other girl tried to swim away but couldn't release the grip of The Love Magnet. Every time my daughter would yell her happiness to anyone who would listen, her new friend would say with exasperation "You already said that!"

I have to honestly admit, as a Mom, that the whole scene was hard for me to watch. I didn't want to intervene, after all, my daughter needs to have the social experience. I am thrilled when she makes new friends. But as I watched this happen, the other girl's facial expressions melted from excitement to annoyance. After a bit it was clear that she knew something was different about my daughter. She would have left if it weren't for The Love Magnet's head-lock. I waded into the kiddie pool to ask my daughter to come out and warm up a bit (I know, it was a made up excuse. I wasn't sure how to extricate her gracefully).

It was a gut-decision. What else should I have done? I really didn't know how to handle it. My daughter was mad at me and didn't want to leave the pool. I wanted to explain to her in private what she should have done....and then realized too late that she would have no clue what I was talking about. How do you explain something like this, body cues and social boundaries, to a 5 year old, let alone a 5 year old with Down syndrome?

Don't get me wrong. My daughter having Down syndrome is actually something I would not change. I know this is part of God's plan for our family and His plan is much better than my plan. But there are times when I do not feel equal to the task and yesterday was one of those times. I don't want a self help book. I want a Divine parenting manual.

Do I do anything? Should I have left them to figure it out themselves? Do I ask the world to accept my daughter as she is or do I try to teach her to fit in their world? There has to be a middle-ground answer. I know I can not prevent future situations like these. Like any parent, I do not want to see my daughter hurt. My daughter was about to be snubbed. She would know she was being rejected but not know why.

I was afraid. And I am so ashamed to admit it. (Darn it, now I am all teary. I can't even confess on a blog without waterworks. *sigh*)

I'm going to have to add this to my prayers. I need wisdom.


Angela said...

I think you're right that it's a combonation of being 5 and having down syndrome. The older she gets I think it will get easier to teach her about social boundaries. I think you did the right thing by pulling her from the pool. I believe you would have done the same thing with any of your boys if you saw them bothering someone. Maybe just start by teaching her she can't hug people she doesn't know. This would probably help with safety anyway. Try to remember that even children without down syndrome get snubbed sometimes and it won't be the end of the world for her. All children go through times of rejection and hurt feelings without knowing why- just think back to the akwardness of jr. high :). I love that she's so huggy so tell her she can still hug family anytime she wants. :) You and Dean do a great job with her. Don't worry so much!

Linda said...

Carrie, you do a great job and obviously the spirit wispered to you what you needed to do. The other girl's mother missed a wonderful teaching opportunity - I wonder where she was during all of this.


heather said...

I love that Lauren is such a gentle, loving spirit. I struggle with Morgan being aggressive and other children not wanting to play with her because she hits them and pulls their hair. I would trade too loving and friendly any day! :) Although it is hard to see other children not being as patient with our kids as we would like. Personally I don't think Lauren did anything wrong--she was just excited to have a new best friend in her twin swimsuit. Can you blame her? :)

Farrell and Marilyn Barlow said...

Your experienece brought tears to may eyes also. You deserve and will get divine inspiration and you did. These are growing experiences for both you and Lauren (refining experiences). And Angela is right it is a combination of age and Downs and rejection is part of life all children struggle with. Hard to watch though. Lauren is Lauren and we love her for being herself. What would we really change?

chronicler said...

I don't have a child with downs. I do have friends who had a downs son. He stayed with us often. My niece, who teaches children (4 and 5 year olds) with downs has told me about working with them. One of the thing she talks about is discipline. She says these kids will have a lot of hard encounters in life and teaching them social skills are important. She also says they will notice when someone has snubbed them or treating them unkindly, so teaching them how to act is a good thing. She also mentions it will, of course, take a bit more time but not all that much and that all 5 year olds need to be taught about boundaries. Mostly to keep them safe, but also to succeed in social situations. Using small words that they understand, can help children conceptualize the behavior easier. Teaching by example, albeit negative ie. the headlock hug, can help them understand why others might feel uncomfortable.

She also says the parents who don't teach these skills have children that have a harder time later on in school than the parents who teach boundaries and socially acceptable behaviors. Parents who reserve their children out as "special" and above discipline soon find out that it is a mistake very quickly. Everyone wants their kids to be liked.

Not that I am telling you to not seek the spirit because that will guide you in the path that you should go always.

Kimberly said...

Oh the joys and heartaches of parenting. Being a mom is the toughest yet the most rewarding job around. Thanks for your sweet example!

Julie Freeman said...

So hard to watch your children go through difficult things. I loved the comments that were made and the only other thing I thought of is that it must be just as hard for Heavenly Father to watch us and the trying times in our lives. He knows you and your sweet angel!