Overall our winter break has gone relatively smoothly. Tate is starting to fall apart, but we are all trying to help him make it through. Jake is doing a magnificent job of using his coping mechanisms to retain his composure and focus. I am growing weary from the bickering and complaints of boredom, but overall, this break hasn’t been one of our worst, and for that, I am grateful. We have four days left before the boys head back to school, and I am confident that we will make it to that date without any major drama.
I had figured I’d wait to blog again until the boys were back in school. After all, Cole is refusing to nap while his brothers are home, and I don’t have my couple of hours to myself right now. I get ideas in my mind, but have no time to write anything concrete. I was content with my little blogging break, too. It was a nice little vacation. Then we got together with some friends last night, and a few statements were made, and I’m left feeling hurt. And how do I process hurt? I write…
We were sitting around our neighbor’s family room watching the Rose Bowl. None of us were totally vested in the game, but it was fun to watch and hang out..and to get out of the house for a bit. The kids were playing in the basement, and we adults had some time to talk, which was much needed. Between the 6 of us adults, there are 8 children. As parents are wont to do, we discussed the kids, and various situations, experiences, and the like.
Most of the conversation was light–fluffy. We talked about how cute the kids were when we have been the “guest” reader. We laughed about reactions to gifts at Christmas. We talked about our children’s personalities. We marveled at how different the children from the same parents can be.
At one point, my neighbor’s 2 and a half year old woke up from his nap and hung out around the adults while he woke up. We had just been over there on Saturday, but I swore that their son had grown again. We all remarked that his speech had exploded, too. My neighbor acknowledged it, as well. She said she had started looking into getting a speech/language evaluation..and then he started to talk. She said she was beyond relieved.
Then she said the words that stung. ”Yeah, I totally didn’t want that kid who is in therapy, ya know?” As she said it, she rolled her eyes for effect. I stared blankly ahead. I should have come back with something..anything…but I didn’t. I couldn’t believe it. She’s been very supportive and asks questions about our boys and their therapies. She seemed to be understanding when I asked to change carpool for a therapy appointment. She had remarked about our boys’ progress, too. I always thought she “got it”. But I guess not. The disdain with which she made her proclamation was clear. Hubz prickled at the statement as well. It was very clear that having a child with a disability is seen as a bother…an inconvenience. Ow. Just. Ow.
I am terrible with confrontation…and I am not always quick on my feet with witty comebacks. I left the room to check on my kids in the basement. They were all doing fairly well. Glad that they were holding their own, I went back upstairs and took a deep breath before joining the group again.
Later on, our friends were discussing how their daughters, both third graders, had a sleepover a day or so after Christmas. They were laughing about how “cute” it was that the girls were on their i-Pod touches talking to other friends and each other while they sat next to each other on the couch. They weren’t talking to each other, but were wrapped up in their devices, huddled on the couch together. I had to laugh at the irony. Hubz and I spend thousands of dollars on therapy and social groups for our boys each year to get them to communicate with peers face-to-face…and here are two neuro-typical girls whose parents think it’s “cute” that their daughters aren’t communicating directly with each other.
Sometimes I wish I was able to find technological isolation “cute”. But I can’t. In our world, when our boys get absorbed with technological devices and isolate themselves from others in the room, we have to encourage them to put the devices away and interact. We have to model social behavior for them. We have to use social stories to help our boys understand the importance of communicating with others.
I am probably being overly sensitive. I know that the comments were not made to make me feel like a bad parent..and weren’t directed at making a point about my children. However, it became very, very clear to me that people who don’t live in our world don’t understand that therapy isn’t an inconvenience. It is a necessity. And it is a lifeline. And it works.
I also realized that among my friends, whom I thought had a fairly decent awareness of the importance of therapy for children with delays, there still is a stigma associated with delays and disability. So, as I sit and lick my wounds…I have decided that my biggest resolution for 2013 is going to be to spread awareness and to get people to understand that a child with a delay or disability is not even close to a bother or inconvenience. A disability makes my children different, yes…and that’s ok.