The Quiet Crisis Next Door

Tag: rare trisomy

  • 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…

  • Travel Size Therapy Note

    A few days ago, I sat on my bed and cried as I repeatedly inhaled deeply a perfume I had tested out on my forearm, a fragrance with jasmine notes. Never in my life to this point have I been able to tolerate the smell of jasmine in the community or even as a background…

  • Some Thoughts About Why

    Generally, many of the teens who went to my high school came from families that were far better off financially than mine. At some points, I was saving money given to me at Christmas and for my birthday by my grandmother and my Aunt Cile and Uncle Lawson…and I would use it to buy thrift…

  • Checking Out For Two Weeks

    An alternate title to this might be “welcome to the sometimes very scary world of special needs dentistry.” When you have a kiddo who needs sedation or anesthesia, even outside of a pandemic, you can wait months to get a cavity repaired. Even when a bigger chunk of the tooth is gone (as we encountered…

  • “Behind the Mask I Wear…”

    Perhaps some of you may not have thought about it, but some of you may have given your imaginations brief rein to fill in the largely unwritten subtext of last week’s post. What does it feel like to stay awake entirely for one night and for parts of multiple nights after that holding and gently…

  • Judging the Parents Shouldn’t be a Spectator Sport

    Many years ago, I had a friend with advanced degrees and the kindest heart. This person needed significant support with activities of daily living. I know the level of support required because I was trusted enough as a friend to be asked to help provide those services more than two decades ago so that the…

  • On Ability, Access, and Representation

    Sometimes talking to anyone can be a tricky thing. I feel like an apology just as readily needs to grace my lips as anything else I could possibly say, because often when I have personally given offense, it was most certainly not intentional. What one person in a group finds offensive another does not, and…

  • Not A Privilege

    I am going to start off by posting some screen shots that I am going to ask each of you to bear patiently with me and read. They provide some context for my remarks this week. For me, this is something I believe should transcend politics. I am sure it is already evident to anybody…

  • A Fine Line

    A couple of weeks ago, Jessi and I were talking as I was firing up the Frankenkindle. She very graciously sits with Tony a few minutes after each session while he watches a video on this near ancient relic so that I can use the bathroom before starting our drive home. Currently Tony is only…

  • Voicing My Support for NMTSA

    My loved ones and readers new to our blog, up until today I had planned to tie this month’s posts together with more information about dental care and sensory issues. However, early this morning I read a letter that left me struggling to keep the mascara from streaking discolored rivulets across my face. After taking…