Seven Snippets

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It’s been a busy few weeks on the blog with Purple Day, Sibling-Palooza, and Undiagnosed Children’s Day. I just can’t pass up these educational opportunities as I believe telling our stories makes a difference. Thank-you all for joining us.

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Aidan is still recovering from surgery. His 5 weeks follow up appointment went well. They moved his legs around quite a bit and he only winced a bit. Dr. Hip was very impressed. For the next part of recovery we have to follow Aidan’s lead.  Aidan has started to drive his power chair again and giggles every time he gets in it.

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Aidan started to bear weight this week while wearing a harness. He looked very uncomfortable at first but stuck with it. He walked two laps around the PT office when we expected him to just take a few steps. This bodes well for the rest of his recovery. Aidan returns to school monday after 6 weeks off.

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Aidan has been waking up at 5:30am since his surgery. I suspect it’s because he’s usually a tummy sleeper and is now confined to sleeping on his back with legs braces on.  I’m not a morning person so I bring him into bed with me. I must say that despite him drumming on my body and pulling my hair close to his face, I really love our morning snuggle time. I might even miss it just a little bit when he moves back into his own room.

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Work on our new accessible addition continues. While it’s been a bit stressful living in a construction zone, I can really see it coming together. It’s almost time for me to write on the floors. I can’t wait to open it up for Aidan and just let him drive free.

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Taxes were not my thing this year. They were totally confusing and then I got some numbers after I filed and had to send in an amendment, blah blah blah. This post made me laugh out loud. (scroll down and start reading under the picture where it says Dharma and Craig) I’m considering sending a poem to the IRS next year.

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Now I leave you with something really hard that I want you to take time to read. An undiagnosed Super Hero died this week, 5 year old Gavin. I only know of him through reading his mom’s blog. Kate wrote through the entire process. While it is gut-wrenching, it’s also hopeful. On her birthday, also the day that Gavin died, Kate requested for people to pay kindness forward. The ripple effect has been incredible and 30 non-verbal children received a communication app thanks to the generosity of Speak for Yourself. Her words regarding organ donation are powerful and the connections she has made as a result of writing are remarkable.  Read it in small doses if you must, but read it. Start here.

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For more Seven Snippets, visit Bringing the Sunshine!

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Wheelchair Diving

 

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True story: I went to the gym this week with a personal trainer. He asked, ‘You’re 40, right?” I was shocked and offended, even though, yes, I’m 40. I was prepared to DENY DENY DENY when I asked him accusingly, “Why do you think I’m 40?” There was no way he could win that one, right? He replied, “I looked at your chart.” Oh, ok. Rational, researched facts for the win.

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Aidan got a huge new feeding chair this week with lots of bells and whistles. Liam thinks it makes him look like a mob boss.  So I shouldn’t be surprised if his iPad soon has a button that says, “Come closer onto the plastic tarp.”

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I’ve been in the news for our incredible accessible housing project that many hands are coming together to build. For more information about and stories from this project, stay tuned to the Bowie House blog.

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There have been so many beautiful acts of kindness done for Newtown, Ct. I wanted to share this one, Ben’s Bells, created by a mom who lost her child to an illness years ago.

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This TED talk is simply amazing. A woman who uses a power wheelchair redefines it as a source of freedom rather than restraint by taking it underwater. I’ve said it over and over that Aidan’s power chair has changed his life for the better, giving him independence and a way to make decisions. It doesn’t make his life smaller; it makes it bigger.

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And here’s another inspirational TED talk by a professional athlete who was in a biking accident. She talks about how we are so much more than what our body does.

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Finally, a fun and thought provoking TED talk about our digital lives.

For more Seven Snippets, visit Bringing the Sunshine!

Snippets of Siblings

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So we all know that disability effects the entire family, right? While we as parents do our best to maintain balance in our lives and form healthy habits to manage stress, it can be more difficult to be a sibling of a child with a disability. But it’s certainly not all bad…

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Check out this incredible video of a girl who has a twin sister with Cerebral Palsy. You will get schooled, then you may cry, then you will want to stand up and cheer.

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Here are some quick stats from Easter Seals regarding adults becoming caregivers for their siblings who have disabilities.

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I just found this wonderful blog Life with Greyson and Parker. Her boys are seriously beautiful. This post discusses what it was like to have her youngest son tested for autism after receiving that same diagnosis for her oldest son.

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This Times article states that, “until we recognize autism’s collateral effects and attend to the special needs of the whole family, we will not really be grappling with the far-reaching but deeply felt impact of this disorder.” Cain notes that siblings of a child with autism, or any disability for that matter, may struggle with both devotion to and resentment of their sibling.

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This Sibling Slam Book is fabulous. It’s written by kids of all ages who have siblings with a variety of disabilities. Each page asks a different question and all the sibs chime in with short answers. I loved it.

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Oh, and this happened at my house… Do you know why Liam is looking at a magazine and why on earth I would include that in a post about siblings? I’ll tell you all about it on monday.

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For more Seven Snippets, visit Bringing the Sunshine!