Tag: Sotos Syndrome
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When Mast Cells Get Grumpy & Other Updates
Yeah, that’s my stomach, and my fit bit. Photos by Ari and Ms. S That’s a shot of my skin with 2 Allegra, 100 mg of hydroxyzine, and prednisone in my system…and the hives still weren’t controlled or gone. Didn’t start getting better until 4 days into the prednisone. Most of my body looked like…
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Autism In The Community: When RFK Jr Talks His Way Into Autism Awareness Month, This Is What I Think You Should Know
Perhaps you’ve heard something about RFK Jr’s comments about autism recently, or you listened to it. Or you saw his follow up comments to Fox News that were posted on his Instagram. Hot off of paying our taxes all by myself as I have for more than 2 decades, deciding whether or not to file…
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Two And Beyond
You may be thinking that title doesn’t make much sense. Some things in life just don’t make sense, not to me, not to you. Or maybe something that seems sensible to you won’t seem that way to me or vice versa. Our republican state legislators this week proposed future DDD funding measures in HB 2945…
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Arizona Legislators: Are You Pro-Life?
Many legislators in our state proudly tout their pro-life support. This week, as letters were being read about the lives of disabled community members during a legislative session, some of our legislators walked out without listening, ultimately blocking a bill from being passed that would have resolved budget shortfalls to disability services in this state.…
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“Put Out?” No.
Just a change in app functionality can show a different picture. What my son’s letter tracing looks like for words without the app correcting the lines for him as he seeks to improve his motor planning and fine motor skills. Photos by Ariana Our son has now been without PT or OT services for two…
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Mismanagement Probably Not: A Second Open Letter Regarding Arizona DDD/ALTCS Funding Shortages
To our Arizona State Legislature and Governor Hobbs: I have read that some in our legislature have blamed the governor for mismanagement of DDD funds. And to Representative David Livingston and all of the other esteemed members of our state’s appropriations committee, I would like to propose considering that another explanation is quite possible to…
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Regarding Proposed Cuts To Services for the Developmentally Disabled in Arizona
An Open Letter to Governor Hobbs, the Arizona State Legislature, and each of you: In this house, my kiddo has now been without PT and OT for more than a month as the situation I wrote about in my last post remains an active and unresolved matter. So in what would have been an OT…
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Just Like That UMR Happened…
Bear with me, that title is going to make sense in a few paragraphs. On December 16th, 2024, I met with an orthopedic spine surgeon to discuss my MRI findings and a proposed surgery. He felt that waiting any longer than necessary to do the surgery increased my risk of permanent deficits, specifically he mentioned…
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Still Busy & Checking In
This isn’t a content heavy post, just a quick check in. We may have been silent here, but we’ve been busy. I’ve started the evaluations mentioned in last post, we did summer school with Tony, and we’re still working on therapy goals. Currently, he’s mastered tolerance of headphones with sound, so we’ve started prep work…
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Some Gratitude & A Quick Note
A few months back, they replaced our local swirly slide with the above…and Tony’s been afraid to go down it because the decline angle comes with increased sliding speed, which is harder for him with his sensory differences. This past week, he worked up the courage and found a way that worked for him to…