As someone who absolutely loves music, I have begun to title my blogs after names of popular songs, old and new. This song is one of my favorites and I hope this article lives up to the title!
I think we have all heard that having a child with disabilities can be compared to getting on an airplane for a trip to Hawaii. You can't wait to get to Hawaii and see the wonderful sights, experience a Luau, and eat the wonderful foods. But then something happens, and you land in Amsterdam.
This isn't what you were expecting. You didn't prepare for this, and now you have to wrap your brain around this turn of fate. We never planned on having children with disabilities and all the struggle that it comes with.
So finally, after 15 years, I have recently learned we must adapt to life in Amsterdam. I can't fix autism, I can't fix epilepsy, and it's not healthy to sit around and throw a pity party. What is productive is to learn how to get through this life and step into the world where our children live.
Our son is a teen and struggling through puberty. He is more verbal than most kids with autism, but expressing his wants, needs, and emotions is non-existent. Recently we went 2 months with him walking up to my husband and I and purposefully dropping the TV remote to watch it break. After that, he would go bang on the flat screen TV.
At first, my husband and I just looked at each other like “What in the world?” We duct taped the back of the remote thinking he was just getting pleasure out of watching the batteries fall out, but he continued the same thing, night after night. We were frustrated because we had no clue what the cause of his behavior was,
I read an article about stepping into your child's world and thought Ok, this is occurring every single night about the same time, so maybe he is hungry. He threw the remote, I offered food, he declined and ran to bed screaming.
Hmm ... no, he wasn't hungry.
Finally, as if lightning struck me in the middle of the night, I sat up in bed and said, " Oh my gosh, maybe this is his way of telling us he's tired."
So, the next night, I watched carefully and as I began to see him get up to come drop the remote control for us, I stopped him and asked him if he was tired? Of course, he didn't know, so I calmly took the remote away from him, we turned the TV off, and I walked him to bed.
I had to catch him for about 5 nights in a row before he got it. But by golly, after a week, he was telling us, "I'm tired." HALLELUJAH!!!
He had no idea how to relay that information to us.
Now I am much more observant. I need to put myself in his shoes to figure out what his triggers might be for the other 23 hours a day.
Where does “Somewhere Over the Rainbow” come in, you might ask? Well, I am realizing that our kids have many special colors to them, much like rainbows. By figuring out one small piece in my son's world, I feel like I am in his world of colors and rainbows where dreams really can come true!
One thing that's been on my mind for a long time is a simple question: Why isn't disability considered part of diversity?
This article discusses the emotions and coping mechanisms that go along with having a child with a life-threatening disease that is very complex and confusing.
A birthday can mean a lot more than just being a year older. For children with special health care needs, a birthday can be a victory. For my daughter, Casey, birthdays were HUGE. They still are.