But, this post is not about my kids and having fun at the pool. I wanted to talk about someone who I met at the pool. Towards the end of the day, another mom came to the pool with her two kids. I immediately recognized who she and her kids were. Their family sat at the same table as ours during the holiday party for all the families with Special Needs at Travis Air Force Base. We spoke a little and made short introductions. She told me at the time that their son was autistic and I shared that Lillian has Down syndrome.
Well, today was the first time since then that I had seen them. Looking at her son, he looks like a typical 8 year old. But when you see him behave and act out you know that he's not a typical 8 year old. At least, I knew that. She and I spoke some more today and I learned that he also has some mental retardation. And I was OK with it, because Lillian too has mental retardation. But seeing this mom in action made me think of all the time and work she has invested in her son to be in the place that he is in now. The discipline and I'm pretty sure a lot of tears.
I can't imagine that it's easy for her. I mean, raising a child with any type of disability isn't easy. But the part that I was thinking that could be the hardest are the stares from other parents. Those parents and people who don't know her situation like I do. Those people who see this boy, that looks just like their son, daughter, or grandchild, act out and throw fits, yells and runs off. What are they thinking? She said that people just stare, and we both know what they're thinking...they are thinking "Get a grip of your child". When in fact, this is her child and this is what he does.
Lillian's disability if visible. She hasn't thrown a fit out in public yet, but when she does, will people stare because of her disability, because she is throwing a fit, or both? I guess really, who's shoes would you rather be in, mine or hers? Or is it even a fair comparison?
Just some things to ponder about.
I think you bring up some good points, interesting things to think about. I often think about these things as well. Autism is certainly a very challenging diagnosis and there is such a broad spectrum. It's got to be one of the most challenging diagnosis' I would think. So hard.
ReplyDeleteGood points. Hard to say what people are really thinking sometimes, unless they give it away with their facial expression. Sometimes I stare. I try not to. But I'm not thinking "Get a grip of your child." I'm wondering what I would do if Matthew threw a fit in public and I wonder how I would handle it. Then, I usually smile at the parent as if saying "that's ok." It's a hard line to walk.
ReplyDeleteBeautiful lady, I am so proud of the way you have matured and developed as a human being. You truly have the "Alma" spirit. Having said that, just remember that God knows you are more than capable to handle anything and your daughter is, too, his child. All children are a blessing from God because they are of God. When people stare at your child, just know that they are only staring at the God in her.
ReplyDeleteSince Kayla has a dual diagnosis of both Down syndrome and autism, I spend time in both communities. One striking thing that I've noticed: many parents of Down syndrome wish there were more kids with DS (often in reference to the high termination rates). I don't think I've ever heard a parent of a child with autism say that they wish there were more kids with autism.
ReplyDeleteOh, I feel so sorry for all the disabled people, especially kids. Yeah, you are right - everyone just stares at them and I hate it, something should be done about that. Anyway, good luck with Lillian, hope things will go easy for you.
ReplyDeleteBest regards, Lorne.
Oh, I feel so sorry for all the disabled people, especially kids. Yeah, you are right - everyone just stares at them and I hate it, something should be done about that. Anyway, good luck with Lillian, hope things will go easy for you.
ReplyDeleteBest regards, Lorne.
This is a very thought-provoking post. I think the thing parents love about their children w/ Ds is how loving they can be. I have a friend whose child has autism and he won't let her hug him. Also, the fact that our children wear their "disability" on their face lets people know up front, but with autism, a child looks like a typical child and the parents have to deal with the behavior issues. I don't want to compare or say one is "better than the other". But I do feel deeply for my friend and all she is going through. I think her experience has been much more difficult than mine based on her comments. Thanks for this... PS: That's awesome that Lillian is standing. How hold is she again?
ReplyDelete