The whole family was off yesterday. Ben had an appointment at the seating clinic at Childrens Hospital. Ben is very mobile, yet refuses to walk EVAH out in public. We're able to carry him now.. but that time is limited.
We get there, and meet with a PT and vendor for the coaches. They roll it in, and it just plain looks medicinal. It's 1/2 wheelchair, and 1/2 stroller. YUCK!!!!! I ask the vendor if they have anything else. Crazy question? He returns with "This isn't Baby's R Us with the selection". Now... I'm at Children's with a purpose, so this asshole isn't going to get me started. The price you ask?.... $1,600..... WHAT!!!! We're told that many people who have children with mobility issues are being denied by insurance. Interestingly enough, we've always been thrilled with our insurance, and don't expect any issue. Who'd think Ben running into the river last week would be so timely. We used that example of why he needs restraint and... that's a pretty good one. Our insurance asks for a 10% copay. That's $160.00. Doable. Those who have benefits through my work pay 50% of durable equipment. That's 800.00 and change. WOW! and how about those that have children that simply are not mobile. What the HELL!
Last night, after children's, I went to the Home Show with my husband and Ben. We got there right at opening (4pm), We walked the aisles, and Brent squeeled quietly every now and then.
It was one of those times where I knew what I saw as normal, others didn't. How many vendors made an extra fuss over Ben. He recieved many of their trinkets, brochures, and even had an offer to go to work for a man. Of course while all this is going on, Ben never acknowledged a single one of them. I knew they could see he was different, and they were being extra nice. I friggin hated it! As soon as someone would start in, I'd look down and away from the vendors to see what was catching people attention. Low and Behold, there's be Ben, flapping, babbling, having what is refered by another mother as "a puppet hand". That description was perfect for what Ben does, so if your child has a puppet hand. you know.
I do know that the public being extra nice, supportative, sweet to Ben shows the world is full of compassion, caring, and generally good people. I just don't want it to have to be for Ben. Leave me alone!!!!
At the end, we were passing a stand where a woman was selling Discovery Toys. Brent stopped to show Ben a ball maze. The woman 55+ or so, begins her selling and then says, "your son is specail needs". I didn't want to reply. I hated thinking that in 3 minutes she could see he wasn't "typical". Can't everyone just leave me and my normal alone.
I answered "yes"... slowely.... and she procedded to tell my husband that her 2nd son was on the Aspbergers spectrum. I KNOW I should have then talked to her like an extended family. She's been there..... but I didn't. I accepted the brochure, and walked away.
Of course when I sleep on it, and step away for a moment, I'm able to relate to my mother some semblence of the story. She tells me of course he stood out. He's gorgous and high energy. Of course everyone would notice him..... to be that blissfully blind.....ahhhhhh
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