I Lied

On Monday, I posted that I had no expectations that the meeting set up by Hope’s ICM worker would result in any real help for us. At the time, I thought that is what I believed. Alas, I was kidding myself, The Dad, and everybody else at that meeting. I only realized it today.


The ICM worker called today and said the SPOA committee turned down her request to transfer Hope to a program that would meet her/our needs- one with on call 24/7 crisis management, behavior management services, and regular respite. I wasn’t surprised, but after I hung up I found myself close to tears.


SPOA wants more records of psychological and psychiatric testing on Hope. They already have all the records of every evaluation that has been done on her. There is nothing else to give them.


Hope had her usual difficult morning, but did make it to school. This afternoon, I do not have it in me. I took her book bag without looking at her communication log or homework and set her in front of the TV, where she  will happily vegetate until dinner. After dinner, it is medication and bed. Therapeutic? No. It is what it is.

6 thoughts on “I Lied

  1. Your a great mom and great mom's put their kids in front of the tv. I am so sorry you didn't receive the help your family so desperately needs. (((hugs)))

  2. You might want to try getting in touch with the New York Commission on Quality of Care and Advocacy for Persons with Disabilities (CQC). Their phone number is 1-800-624-4143, and their website is http://cqc.ny.gov/. I don't know if they could do anything in your situation, but it might be worth a shot. Good luck. I remember those days, when Toots would rage about doing homework. She would put her head down over her paper so I couldn't help her, and then complain bitterly that I wasn't helping her. Some days it's just too much to take.

  3. If therapeutic by itself was all Hope needed, you'd be rocking it instead of sweating blood like this trying to access the high level interventions and resources for her. Even the mid level resource people are confirming she has needs beyond their ability to meet!If tv means that you and Hope get through to bedtime intact, hurray for tv, you both live to fight RAD another day when you have the resources and support in place to do it. Hugs, I'm so sorry this has to be such a battle.

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