Thursday, February 21, 2008

X Factor

My shpeel on Fragile X Syndrome for the week.

OK, I just have to talk about it once in while--I mean it pretty much takes up my whole life. Both my younger kids have it. Bless their hearts.

There are some days that I just don’t know how I can handle it anymore. Communication is such an important thing. When you have an over emotional 2 year old who can’t always tellyou what she wants-it can get pretty stressful. My brother learned that the other night when he was here to work and witnessed one of my 2-year-old’s incredible tantrums. She couldn’t tell me what she needed and I couldn’t figure it out. She fell apart for a good hour and let me tell you, she wasn’t happy. I sang lots of songs, rocked her, snuggled her in a blanket, put on a movie, held her, took her for a walk around the house. Finally, I guess she just got tired of it and fell asleep. And then the next morning she wakes up and she is just so happy--smiling from ear to ear, bounding about the house in the gallop we all know so well. How can you stay frustrated!

Then there’s my 8-year-old. Bless his heart. He is doing so well, and trying so hard to succeed in school. I was so excited because yesterday we found out he moved up a level in his reading!! Oh happy day!!! He talks so well, but he still has such a hard time explaining himself sometimes and really doesn’t know how to explain what his feelings are.

I watch both of them struggle, knowing they are so smart but their little brains just can’t help them get it out there. Oh how I love them. I wouldn’t have it any other way, but there are days when I think Heavenly Father has a great sense of humor because he thought I could handle all this.

Again, I want to express my love for all of you who have put your arms around my children and treated them just like anyone else. I know they do better because of the support group of friends and family we have.

1 remarks:

BallerFam said...

I know they have trouble communicating verbally. Have they done any studies about how well they would learn sign language? I don't know how your kids' motor skills are.