A dear friend from my high school and college days recently gave birth to her third child, a baby girl. All the excitement and anticipation of a new child was suddenly tempered by the fact that she was born with Down syndrome. My friend is now dealing with many issues. There are the immediate issues of feeding problems and assessing the baby’s health. Then there are the long term issues. I’m sure that my friend has a million thoughts running through her head about what the future will bring for her child. She will spend the rest of her life advocating for the needs of this child.
My heart and my prayers go out to my friend and her family. I know that everything happens for a reason and that God never gives us more than we can handle. This beautiful baby girl will bring much joy to her family and they will be blessed greatly from her being born. But, no doubt, there are many struggles ahead as well.
Being an advocate for a special needs child is not an easy task.
My oldest son just turned 18. He has serious learning disabilities and struggles with both reading and, especially, writing. As he prepares to graduate and go out into the world, I question myself a lot. Is he ready? No. Did I do enough to prepare him? No. Will he be OK? He will be. I’ve had to work hard to advocate for his needs and, quite frankly, I’m not sure it did a lot of good.
The public school system still has a long way to go to truly meet the needs of children with disabilities. I’ve argued and argued in his ARD meetings over what, to me, should be common sense things. If he still doesn’t have his basic math skills down, why teach him Algebra and Geometry? The ridiculous answer I get? Because it’s on the TAKS test! Does that make any sense to anyone else? I need my son to graduate with the ability to handle his finances, to balance his checkbook, and to know if someone is charging him the right amount of money. His math education should focus on the needs HE will have, and Algebra doesn’t meet that criteria. I don’t give a crap about their TAKS test. But, it’s like banging your head against a brick wall.
Maybe if my husband and I had been there from the beginning, it would have made a difference. He was a month shy of turning 12 when we got custody of him and he was 15 before he was adopted. Would it have made a difference if we had been there when he was younger? It’s a question I’ll never have the answer to. But, many times over the years, I’ve looked at him and thought, if I’d only had him sooner….
He got his first job a few months ago and he has done well with it. He gets there on time, works hard, and doesn’t goof off like many teenagers on the job. When he got hurt recently and couldn’t work for a few weeks, I was afraid he would lose his position there. But, they clearly like him, and brought him back when he was able. It makes me feel a lot better about what the future holds for him. Being a hard worker can take you far. But, I still worry.
Did I do enough while I had the chance? How do I help him make the transition from the safety of home into the big, complicated world? I guess it’s a question every parent asks themselves, whether their child has disabilities or not.
In fact, every child, whether or not they have disabilities, needs someone to advocate for them in our crazy, messed up education system. But that will have to wait for another post!
As for my friend, I hope I didn’t give her even more to worry about. She has a while before she has to deal with schools and such. For now, she just needs to love on her new bundle of joy as much as she can.
Besides, don’t we all have special needs? Every last one of us has both abilities and disabilities. We are good at some areas of life and struggle in others. If you really get to know someone, no matter how “together” they appear on the outside, they will have some “disability” that they struggle with. Maybe instead of “disabilities”, we should just call them “different abilities”.