I have had one glass of wine so I am feeling chatty and thought I would, should, could update.
Change of plans. I went back on the Pristiq after that AWFUL withdrawal and we are adding Abilify. You may have seen the adverts for Abilify and laughed, for they propose to add Ability when you are ALREADY ON ONE ANTIDEPRESSANT AND IT ISN’T WORKING! I have seen people on twitter make fun of such a thought. One is not enough?!! Pharma-insanity. No, just insanity. I was very hesitant to go on the Parnate with the diet and other drug restrictions on this whole Other Antidepressant Plus Abilify is New and Hot, so I read, I googled, and it will take be another 3 weeks or so to up to a therapeutic dose, before I am Abilified, as it were. I have been on and off, mostly on psychiatric medication since I was 19, I have tried a lot of different classes and kinds of drugs. My options are limited. I read some good, albeit mostly anecdotal information on the combo, but I am trying it first, well, trying it like 13th, but before the MAOI class of drugs, which Parnate was. Wow, wasn’t that druggy and boring? I don’t feel great. The withdrawal is gone, but I am not on therapeutic levels of anything yet, so I am still an annoying, sad, scared, anxious, bitch.
So much is going on with Charlotte at the same time, I am just trying to keep my head above water. My ass out of bed, shower once in a while, occasionally put on something that isn’t pajama adjacent.
The government is supporting us in a program of “Specialized Services”, this means, help from an Occupational Therapist (OT), a Speech and Language Pathologist (SLP), a Psychologist and four hours of respite a week. The number of hours will be about 3-5 hours a week of therapy for Charlotte. Therapy for Charlotte AND us, since this lovely group of people will be with us for a year and then support will be removed or reduced.
Charlotte’s diagnoses from the School at the Rehabilitation Hospital is at follows:
- Language-based Learning Disorder (LLD)
- Attention Deficit Hyperactivity Disorder (ADHD) – Inattentive Type
- Mild gross motor delay
- Moderate receptive and expressive language disorder
- Obsessive-Compulsive Disorder (OCD)
- Generalized Anxiety Disorder (GAD)
- Features of Autism Spectrum Disorder (ASD) without meeting full diagnostic criteria
Quite the mouthfuls. She has Autism, she is on the Spectrum. She also has Sensory Processing Disorder, which was not diagnosed by the school. They are wrong about the Autism. I know they are, the team admits the diagnosis is fluid and “others”, cut the spectrum off differently. This is wrong. A year of other assessment and treatment and research and unofficial diagnosis of WRONG. It means she gets .2 of an Aide in her classroom back in regular school, not .8 if she was ASD. It is inaccurate. She was diagnosed in a bubble, in a classroom of 7 other children with about 8 other adults around at all times. We are continuing to see the consulting Psychiatrist, and I am hopeful with the support and reporting by her Specialized Services Team, her teacher, her Aide, and her parents, and um US, we can review this diagnosis. I know I am “just a parent”, but I have read my ass off, been to conferences, talked to other people who have treated her outside of the Hospital school and she may be high functioning and all of those other things they listed, but she is Autistic and I want her treated accurately and properly. I thought the fight for support and accuracy and proper diagnosis would be over after the 5 months at the hospital school, but it is not. I have to pretend to have some balls and fight for what I know is the best and most correct treatment for my kid. Yes, she is adorable and precious and likes adults and will occasionally look you in the eye, but that does not negate what is really going on. She is starting week four at her regular community school. We drop her off early and pick her up early to avoid the chaos and noise she has to process when all the other kids are arriving and leaving. She is often non-verbal, refuses to participate or has to be cajoled and supported by the teacher or the aide, when she is around. Is has been hard on all of us. Not to mention her mother is crazy and not fully medication. Thankfully Mark is awesome and the best dad and husband ever or I cannot imagine where we would be. He has bought the development kit to create apps for iPads and iPhones, and is busy preparing a iNotCrazy app in case the drugs do not work.
This is what our life is right now. There are good bits. Her birthday was awesome. Her very first birthday party with OTHER kids. We went to my friends art studio 4cats.com and had a pop art painting party. Charlotte did really well. I made cupcakes like a champ. We wrote out 20 Valentine cards today which was patient testing, on all three of us. Writing names! Stamping! Stickers! OMG!
Have a beautiful Valentines Day tomorrow, for I know you are all loved.
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p.s. I am going to Mom 2.0, are you? I wish you were.