Acceptance is a funny thing. When Beth was born, I didn't know what to expect and the books in my local library were old and should have been thrown out. If I believed what they had to say, I might as well give up and put Beth in an institution. But as you should know, I found better resources and learned a lot about what Down syndrome means. I have much yet to learn, but I have made a fair distance down this path when Ezra was born.
In 2 1/2 years, my expectations had grown way past what the books had to say! So much so, that when Ezra was born, all I could see was that he was a boy. It was 10:00 at night and it was dark in the car. ; ] Yep, he was born on the way to the hospital! Anyway, when we made it into the light, I looked him over and it wasn't until I saw his feet and how his big toe was separated from his other toes, that I went back up to his eyes and saw that he too has Down syndrome. I said it out loud. I think the nurses were relieved that I already knew and no one had to "break it" to me. Truly, when I discovered that he too has Down syndrome, it was just like discovering the color of his hair or the color of his eyes. That's all it was to me! Just a difference and not a burden. I never felt the need to mourn the loss of the normal dreams for this child.
What does that mean? It means that I accept whatever the future holds for him. As any other of my children, I treat him according to his needs. If his needs are more or greater or different, then that is how I treat him. Sure it gets old and tiring sometimes, but that's okay. It gives me something to laugh about! As with my other children, I just push for a little bit more and a little bit more advancement. I don't go so far as the Einstein group. I don't think I have anything to prove. I don't have to have the smartest child with Down syndrome. I am sad when others don't accept Beth and Ezra. It's hard when they ask "stupid" questions and when my children are a curiosity, instead of just children. If my grandchildren pass up Beth and Ezra, that will be a hard moment. I don't know what Beth and Ezra's limits are, (we all have them) but we will find out together, or not... I'm just not going to be the one who lowers the bar of expectation. Sure, I am realistic! We are taking smaller steps.
Sometimes when I think about where did those statistics come from, about how far our children can grow and mature? Not long ago, the life expectation was not very good. Heart defects were not found or treated as often. Hypothyroidism was not looked for and treated as well. (That itself makes a huge difference! Hypothyroidism is the leading cause of (please excuse the old wording...) Mental retardation. Reflux is so common with children with Down syndrome. Reflux can lead to pneumonia, as was Ezra's case. Our children have better health care than previous generations! This alone can lead to not only greater life expectancies, but also greater abilities!
So, is it possible to accept things as they are and yet also reach to something greater? I think I can! I think we all do or we wouldn't be here. I'm sorry I went long. It's a big and important subject!
After reading about the Special Olympics swimming program, I wish we had one for Beth and Ezra. I can see the value in having someone who knows how to work with your child! That's why I would like to do the horse therapy. I want to see how someone else would unlock Beth's cooperation. I have done swimming lessons with everyone else, why not Beth and Ezra?
Sorry for the essay! I hope you are encouraged!
Beth and Ezra like StarFall.com. Beth can use the mouse and Ezra is fine just watching what Beth is doing. They both copy what is being said and/or doing the signs for the words. StarFall.com has many levels.
No comments:
Post a Comment