Thursday, October 7, 2010

Thankful For Friends/Family and The Cost of Education/Inclusion

Hi all,

I just want to start by saying "Thank you God" for my friend Marion Wallace. Marion happens to be a neighbor but she is really a great friend to me and my family. We met when Isabella and her granddaughter, Taylor, were in preschool together and we've been friends ever since. Even if we don't see or talk to each other in awhile, we pick right up where we left off. She's always there for us, in a lot of ways over the years, and just a true friend. I'm SO thankful for her!

That leads me to the gratitude we have for our friends and family. Many families who have kids with disabilities have reported to me over the years that their circle of friends change for a variety of reasons once they have a child with a disability. For us, we found that some people who were our friends, stopped coming around or contacting us after we had Nick. We only have a few friends that have been with us throughout our journey. Whether they felt uncomfortable and didn't know what to say to us, couldn't relate, or we were just too busy and were in a constant crisis for years, it was hurtful. The upside though is that we have met so many good people since we've had Nick that we probably would not have met otherwise, and made some great, lifelong friends along the way. For that, we are so thankful!

It can be hurtful too when family members aren't there for you either. Greg's parents used to have garage sales for us to raise money to buy special equipment for Nick. For instance, his first wheelchair was a stroller wheelchair, because he couldn't hold his head up or sit up in any regular stroller and needed more support. It was $1700 (in 1993) and insurance did not cover it. This is one example of many. Anyhow, we actually had family members who said, "well, we are struggling and need a garage sale too!" (with their healthy kids) I've heard countless stories from friends, some with supportive family like most of our family is, and some with family who felt uncomfortable around their kids, wouldn't help out, etc. and it was hurtful to them. We are thankful for our parents and my sister who helped us out a lot over the years with Nick and our family is very supportive to this day. Sometimes people can be thoughtless and mean-spirited but we are lucky that for the most part, we've had good experiences.

On another note, this week I am ordering graduation announcements for Nick and his cap and gown. As I sat in bed one night reading through the packet of materials featuring all of the things you can order (shirts, key-rings, etc.), and for just one small moment, I thought, "this is expensive!" I stopped myself and felt thankful that we (Nick) have gotten to this moment. I remembered the times we were told this would not happen when Nick was younger. Then I thought how grateful I was to pay any price for this "stuff". People always talk about the "cost" of including/educating kids with disabilities in public schools. We know the cost, literally, as we educated ourselves. We also know the cost we've paid in hours of meetings, hours of extra help with Nick physically and literally with homework, etc. (writing for him, etc.), emotionally (teasing, etc.), and by the way, we pay our taxes, vote for school levies, and pay for all of the "extras"/"stuff" just like everyone else does! We know the cost of inclusion/education for Nick very well. College will be even more with personal attendants and disability supports on top of the tuition, etc. We can honestly say, we're GLAD and thankful to pay this price to see Nick where he is today and where he will be in the future!:)

Blessings:)
Amy

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