Being a special needs parent is vastly different from being the child with special needs, or from being the big brother. I am hoping to start a new series called In Their Words that allows Caleb and Abby to share their own perspectives. Abby is getting old enough now to share some of her frustrations and fears about her surgeries, and I think it is important for her to feel like she has a voice. Caleb is often so reflective that I know he will have lots to share. Who knows, maybe In Their Words will make it to The Mighty!
Today, Caleb is going to share what it is like being the big brother to a child with special needs. This is written in his own words, with me as the typist. :)
Abby's big health concerns are her spine, her breathing, her hearing, and her seeing. She has to have a lot of surgeries on her back and ribs. She has special needs, which means you need special stuff to help you with sickness or special things that other kids don't have. And I don't like the term "regular" kids. It doesn't sound right, because we're all kids. We're all unique.
One time, when Abby was a baby, there were some kids pointing at her neck because she had a trach. They were laughing. It made me feel angry because they were making fun of her, and she's my sister. Children with special needs should be treated the same way other kids are. They shouldn't be treated any differently. We're all kids. We're all people.
I think the hardest part about being Abby's big brother is all of the surgeries, because I don't get to see her and I miss her. But the best part is seeing her for the first time when she comes home after a surgery. We get along really well for the first few days after she gets home! If I could change one thing about our life with Abby, I wouldn't want her to have so many surgeries because I miss her when I don't get to see her.
When we were younger, I was surprised at how much attention Abby got. But it's fine. It's just surprising that she got so much attention. She doesn't get as much attention now. I feel like we get about the same now. But when she was a baby, she did.
One good thing that has come out of being a special needs family is definitely The Ronald McDonald House! They are always welcoming and kind. Nobody there makes fun of you, and they look at you the same way they look at other kids. I love it there.
If I could tell the world one thing about children with special needs, it would be that they are the same as other kids, so just treat them the same way. We all need love.