Tag: Trisomy 5Q
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Finding Ways To Turn The Volume Down
Tony was struggling for a while with accidentally holding down the side volume buttons on his kindle for too long, which would mute his device. His brain takes longer to get his muscles to learn how to replicate motions he sees (it is not a matter of understanding, his brain knows what it wants the…
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Dear Governor Hobbs and Arizona State Legislators: Can We (Maybe) Talk About The Budget?
I read about it on ABC 15. I read about it on FOX 10. Governor Hobbs vetoed the proposed budget. So, cool. I’m not hear to discuss any one party’s views about it. To me, what it means is that while many of our state legislators and our newly elected governor don’t agree on what…
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Maybe I Still Can’t Always…
Maybe I can’t tell you all the reasons my schedule is bleeding losses of self-care. Maybe I still can’t always get into every medical appointment I need to for myself. I’ve actually made two annual physicals in a row…but I have two other specialists I’m past due for visiting and a mammogram that will happen…sometime?…
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“So, How’s He Doing?”
I get asked a lot lately, “so how is Tony doing?” Well, it’s been a very busy couple of months. We went right from the transition out of services with his former ABA providers (and he was really heartbroken about that) into the holidays where pretty much everybody who works with us wanted to take…
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The Gift of Listening
I don’t automatically check on therapy programs to verify the use of best practice for Tony the way I do for medications. Therapy programs don’t come with life-threatening interactions or anaphylaxis. I do tend to read a bit about any therapy type he needs because sometimes it can be hard to find providers where we…
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When Life Teaches You To Verify
I was 14 when I was finally given a diagnosis for the birth defect on my right foot, and I have had two corrective surgeries on this foot. Many years ago, in my mid 20’s, I had just started seeing a popular, well-respected podiatrist within the healthcare system I worked for. He had started me…
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A Bit About Matters Old & New
I have always been so very grateful to the therapists and individuals who have chosen to work with our son and our family. So many years ago when Andy and I were driving our rental car towards Disneyland on our honeymoon, as we talked about the family we hoped to start our current circumstances really…
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Habilitation Thoughts & Thanks
The last habilitation therapist to work in our home was a lovely young woman. I really liked her. She had never worked with the developmentally disabled. Had no educational training, no knowledge of the therapy types or techniques. I trained her myself on Tony’s programs…personally I care more about someone’s ability to be patient and…
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“What’s Love Got To Do With It?”
Our son has what is considered to be severe Autism. Some people think that means he can’t love people, or that he doesn’t pick up on things they do and certainly that he doesn’t grasp any of the implications. He has always loved, always bonded with others. And I have never seen him bond with…
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What Can You See?
I’m going to start this off by asking that my loved ones who recognize the situation below make no comment. I will not be giving any identifying information because my aim is to educate and nothing more, and I will definitely strike down any public comment that doesn’t honor the spirit of that. Once upon…