February 14, 2011

Altered States

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.

xoxoxo

* * * * *

p.s. I am going to Mom 2.0, are you? I wish you were.


11 Comments

  1. I hope you get the right diagnosis for C. She is so big now! What a cutie.

    LOVE the monster on the cupcakes. I was obsessed with those things when I was a little kid. And the butterfly picture. Gorgeous! That room is beautiful.

    Aw, dumb Twitterites. I think the name ‘Abilify’ might partly explain the ridicule. Like: I coudn’t do it so I abilified myself! But sheesh are they doctors? What do they know? (Or ME for that matter!)

    I love you, you gorgeous wench. Damn those neurochemicals to hell and back. May they activate soon.

    Comment by ozma — February 14, 2011 @ 1:39 am

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  3. I’m curious to hear how well Abilify works for you. Haven’t heard anything one way or the other, but the commercials look damn appealing.

    I’m kind of stunned that they gave Charlotte that many labels and yet said she didn’t meet the criteria for autism? Roll all of those diagnoses into a ball and you’ve practically got a description for autism! I’m glad she’s got a plan for therapy now, though – hopefully it’ll be a big help. (And my goodness you’ve got a cute kid, BTW.)

    No plans yet to be at Mom 2.0, but don’t count me out yet. I’m still looking for a way, if only for the chance to see you again. Know anyone who needs a blogger to sponsor? ;)

    Comment by Christina — February 14, 2011 @ 3:14 am

  4. It took us 4 years to get properly diagnosed for our son. I’ve turned into that obnoxious mother. I actually told someone in an IEP not to let the alphabet soup after their name cloud their judgment on my observations of my own son. I love that we’re not qualified to make recommendations… But we’re trusted to, you know, keep them alive. Incidentally, my son is on Abilify at the smallest dose. He’s on it for its own benefits alone, so its function isn’t to augment another drug. Between the Abilify and changing schools (a bully landed my kid in a mental institution, and they said my son was too sensitive) the change has been of Biblical proportions. So, we finally have a diagnoses, he’s getting treatment, he’s got a school that knows what they’re doing, and I have my kid back. He’s in a class of only 4 including him. It removes all the social drama from the playground that gave him such terrible issues. The playground can be a daunting, dangerous place when the social rules don’t makes sense to you. I wish you the best in the diagnoses process. It’s a hard road. It took a clinical study at UCLA (the people who create the parameters for the diagnosis in that book they’re so fond of) to convince everyone that he wasn’t bipolar. The clinical study people finally diagnosed him, which was incredibly kind of them since he didn’t qualify for their study. I also wish you the best in getting your meds right for you. The transition cannot be easy. Anyway – I know I never comment. I just wanted you to know there are people out here who have walked that road. If you ever need to vent, just holler.

    Comment by michele — February 14, 2011 @ 7:51 am

  5. That party looks like it was AWESOME, I love the butterfly painting the kids created, and in case I didn’t mention it before the cupcakes turned out great! I’m honored to have played a tiny part in them. :-) (I don’t think I ever replied to your email and if I didn’t I apologize. My emailing has been sporadic lately what with usually not having two hands free thanks to a nursing baby.)

    Comment by bethany actually — February 14, 2011 @ 8:56 am

  6. Oh wow, you’ve got a lot going on, my dear. I’m happy you have a drug plan. I’m not a big fan of Pristiq (didn’t work for me either), but I hope it goes well with the Abilify for you!!!

    Charlotte is so blessed to have you for a mother – for her advocate. And I’m happy you both have Mark. :)

    I WISH I was going to Mom 2.0! I haven’t seen you in way too long!!!

    Comment by Mrs. Wilson — February 14, 2011 @ 11:00 am

  7. So glad you can celebrate the good bits. The cupcakes ROCK, but of course you made them.

    I agree with Mrs. Wilson – Charlotte is blessed to have you as her advocate…and her Mom.

    Happy Valentine’s Day – you are loved.

    Comment by Lorrian — February 14, 2011 @ 12:01 pm

  8. Glad you are on the upswing and I can’t wait until you are past the diagnosing stage for Charlotte. I’m sure that’s the worst part. Once it’s all been figured out you can focus on dealing. HVD! (as my 11 yo says)

    Comment by AnEmilyB — February 14, 2011 @ 1:18 pm

  9. The picture is amazing. Monarchs amaze me because they migrate impossibly far, defying obstacles and distance. I think your Charlotte will do the same. You, too.

    Comment by lettergirl — February 14, 2011 @ 3:05 pm

  10. That painting is kind of awesome. I’ve heard that 4Cats is great and I hope to take the kids there one day.

    Reading your tale of your daughter is maddening. It sucks that we have to be bulldog moms to get help for kids. I hope things work out for her and for you really soon.

    Comment by Marilyn @ A Lot of Loves — February 15, 2011 @ 12:56 am

  11. There is a lot here that sounds joyful and just good. Hold on to it, and good luck with the battles ahead. Cheering for you, Val

    Comment by Val — February 19, 2011 @ 1:32 pm

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