Well our 5th Autism Awareness Day since Waylon's diagnosis has now come to a close. I hope he can feel the love that I know was spread for him yesterday. My heart swelled a little more each time I saw a profile pic turn blue. Amazing. Just amazing. And our family "lit it up blue" proudly. Including our trusty minivan, who, under the circumstances, did the best she could.
I mentioned on Facebook on the eve of Autism Awareness Day about the hellacious weekend we had, that had given me writer's block and kept me from writing my official Autism Awareness Day post. Our water line burst and we had to have it repaired, I got a speeding ticket during a long road trip on Sunday, and Travis hit a deer in the minivan on the way home from soccer Monday night.
The truth is, I was having a hard time writing about April 2nd anyways- after 5 years, I still don't really know how to feel about it. It's really not a day I want to have to celebrate, for us or any other family out there. So although I don't have some mind-blowing, philosophical post for you to read about what this day means for us, I do have a few random thoughts.
*You know, there are adults living with autism out there who say, if there were a cure, they wouldn't take it. They wouldn't change having autism because that's who they are, and they use April 2nd as a day to celebrate being who they are. I don't mean to undermine their feelings, and I really hope that Waylon can feel that way too, someday... But it's still really hard for me to understand.
Because I think autism sucks.
Waylon, God bless his mighty little soul, walks around everyday in a body he can't control, hearing sounds and not being able to respond, feeling pain and not being able to tell anyone... This is something he has to live with that I wish no child would ever have to experience. And I think he deserves this outpouring of support everyday of the year, not just April 2nd.
He is my hero.
*You may have noticed I have been asking for your support every Spring, to call and email legislators to get an insurance mandate for autism passed. Every year, it has fallen short. But this was the year. It passed yesterday in the Senate, and is headed to Governor Brownback's desk. Finally, after years of paying ridiculous amounts for therapy, our insurance will be required to cover a portion. Not only is this important for Waylon, but for thousands of other kids in Kansas who have never received any therapy because of the ridiculous costs. It's not a perfect bill- the coverage still falls short of Missouri and other states' insurance mandates. But hey, it's a start. Hopefully it makes a difference for the future of these 1 in 68 kids. Best Autism Awareness Day gift ever.
*Travis put Waylon in his car yesterday to go to his school, and as soon as he got back inside, I said, "Hey, what shirt did he wear today?" When Travis told me which one and asked why I cared, I reminded him that it was Autism Awareness Day, and he was supposed to wear blue. Trav just smirked and said, "Are you serious? He doesn't have to wear blue, he lives it."
So last night, in honor of Autism Awareness Day, I had a glass of wine. Because we live it.
*My original post was going to be 30 things you could do this month- Autism Awareness Month- in support of people living with autism. But this is as far as I got, so here goes:
1. Be a friend to someone living with special needs.
2. Thank God today for the gift of communication.
3. Get down on the floor and spend 15 minutes engaged in conversation and play with each of your kids- harder than you think.
4. Spend 30 minutes of your day without words.
Call it a challenge, call it some random thoughts from a crazy hormonal woman, whatever.
*You know, there are adults living with autism out there who say, if there were a cure, they wouldn't take it. They wouldn't change having autism because that's who they are, and they use April 2nd as a day to celebrate being who they are. I don't mean to undermine their feelings, and I really hope that Waylon can feel that way too, someday... But it's still really hard for me to understand.
Because I think autism sucks.
Waylon, God bless his mighty little soul, walks around everyday in a body he can't control, hearing sounds and not being able to respond, feeling pain and not being able to tell anyone... This is something he has to live with that I wish no child would ever have to experience. And I think he deserves this outpouring of support everyday of the year, not just April 2nd.
He is my hero.
*You may have noticed I have been asking for your support every Spring, to call and email legislators to get an insurance mandate for autism passed. Every year, it has fallen short. But this was the year. It passed yesterday in the Senate, and is headed to Governor Brownback's desk. Finally, after years of paying ridiculous amounts for therapy, our insurance will be required to cover a portion. Not only is this important for Waylon, but for thousands of other kids in Kansas who have never received any therapy because of the ridiculous costs. It's not a perfect bill- the coverage still falls short of Missouri and other states' insurance mandates. But hey, it's a start. Hopefully it makes a difference for the future of these 1 in 68 kids. Best Autism Awareness Day gift ever.
*Travis put Waylon in his car yesterday to go to his school, and as soon as he got back inside, I said, "Hey, what shirt did he wear today?" When Travis told me which one and asked why I cared, I reminded him that it was Autism Awareness Day, and he was supposed to wear blue. Trav just smirked and said, "Are you serious? He doesn't have to wear blue, he lives it."
So last night, in honor of Autism Awareness Day, I had a glass of wine. Because we live it.
*My original post was going to be 30 things you could do this month- Autism Awareness Month- in support of people living with autism. But this is as far as I got, so here goes:
1. Be a friend to someone living with special needs.
2. Thank God today for the gift of communication.
3. Get down on the floor and spend 15 minutes engaged in conversation and play with each of your kids- harder than you think.
4. Spend 30 minutes of your day without words.
Call it a challenge, call it some random thoughts from a crazy hormonal woman, whatever.
 |
| Lucy's first selfie, wearing blue for her big brother. |
No comments:
Post a Comment