It's hurry up and wait time again. We wait helplessly and without being given a voice to advocate for our daughter or ourselves. The APS medical review board that analyzes patient documents to determine eligibility for PRTF and consequently, allocation of state medicaid dollars reviews Sissy's case this week. Previously they have approved in 30 day increments. Her last review gave approval through June 6.
That means, by this time next week, I may be picking Sissy up from the RTC with zero supports at home. It also means we have to hurry up and celebrate WG's birthday before Sissy comes home because we don't want a repeat of last year's hell and torture.
Or, it could be that APS will grant her another 30 days.
If I could have my say with APS, a bunch of strangers sitting behind desks, wearing fancy clothes and only reading clinical documentation on my daughter, none of which includes the mental health status of the other FOUR members of the family the psychiatric patient resides with, I would say the following:
1. We need another 60 days to
a. write an IEP
b. evaluate her for DD
c. apply for the DD waiver or
d. reapply for IFI and CBAY if she is determined to NOT be DD afterall
2. We need another 60 days to
a. recuperate from PTSD
b. repair things in our home
c. get a lawyer pro bono
d. research PRTF licensed facilities in other states
3. We need another 60 days so
a. Sissy can begin to show her true behaviors, 90 days isn't long enough for her to let her guard down completely
b. Sissy can continue in the intensive CBT treatment setting
c. Sissy can continue to feel safe; not suicidal or self-harming because by God, my daughter deserves that at least!
What will we get?
No one knows. It's a damn roulette wheel. Most maddening of all? Her therapist has not spoken to me in two weeks, not even responding to voice mails or emails. We haven't even scheduled a family session.
My last post was a jumble of thoughts, a rant of psychotic proportions. I have actually some very clear thoughts and research to review but for today, I'm going quilting. Tomorrow, true to my natural ability, I will educate my readers because I know many of you need this information too.
In positive news, we have finished preliminary testing for AB and have determined that at this time, although he is indeed growing fast, he is still within the derivations of the mean. We will continue to watch his growth but his DD specialist mentioned that many DD kids will have rapid onset puberty, stall out and then finish much later than their chronological peers. Let's hope that is the case for AB who, at the moment, is dealing with the transition from school to summer vacation by stimming my mind into numbness. Someone get me duct tape, I'm going to tape this boy's arms to his body!!!
tomorrow - information, quilt pictures and potentially and answer about Sissy.
6 comments:
Still here, still reading, waiting with you.
Have I ever told you how awesome you are?
Dear friend, I haven't commented much, but I wanted you to know that I am continuing to pray for your family, for answers, for continued peace for you. ((((hugs)))
Is the starting puberty early but then stalling out thing related to his FG syndrome or his autism? Because I can tell you from first-hand experience that early puberty in people on the autism spectrum does NOT always stall out. I was menstruating at 10 years and 8 months, and stopped growing around my 13th birthday at a height of barely five feet. I'm still mad at my childhood doctor for not medically delaying puberty for me--I was not socially or emotionally ready to handle it at such an early age, and I still resent not having been able to grow to a normal adult height.
@ kisekileia - i think both for AB. I'm sorry to hear about your struggles though. I agree, that is hard. I'm going to keep a close watch on it though because it's really bothering AB (and reasonably so) even though the doctor's are saying "falls within normal"
Yeah, I think it's important to point out to the doctors that a kid with an ASD is even less ready than other kids to go through puberty very early. My situation technically fell within normal too, but it was still developmentally inappropriate for me. I think respect for AB's individual needs and wishes should trump the "technically within normal range" thing, and I would push pretty hard on it with the doctors.
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