Just got back from psychiatrist and social skills intake....WOW

Discussion in 'General Parenting' started by buddy, May 24, 2012.

  1. buddy

    buddy New Member

    I didn't bring Q, we just talked about the patch issue. I'm liking this doctor more now. She gave me extra clonidine tabs to use on the days when it seems the patches are ramping down (no more talk of oh no, he has too much...they see he is stable and so no worries)

    THEN she says, ok, from now on, we are going to pull one off, every 4 then 3 days (so when one hits 7 it comes off but then put a fresh one on) Does that make sense? SO, we may then have less of an issue because only one of the patches will be on the downward trend while the other is at the max. If that lowers things overall it might not work but it is worth a try.

    In the mean time I have the extra tabs anyway so....

    The other issue that just started is that the new zyprexa JUST came out in generic. So so far only the 10 mg dose has been refilled and he started that on Sunday night. Tuesday there was an issue at school, then an issue with the Integrated Listening Systems (ILS) person at night (OMG AND security people in a library, uggg) and then Wed. with me again... plus his general irritability factor is off the chain again, if I bobbed my head to music he screamed at me, if I tapped my finger on the steering wheel he hit my shoulder, etc. Just back to before the zyprexa increase. Then I remembered we switched to generic. Could be a bad week, I know, but the timing is weird.

    BUT since they just switched to generic the sales rep gave all her samples to the clinic. They gave them to me to switch back to zyprexa name brand. She said since it uses two enzyme systems to process the medication and one is the one Q does not have (it is secondary to the other one) that may be one issue and the generic has to be within a certain range of the name brand for bio-availablity but not exact so it could be that the two things combined have put Q who is so sensitive at a place where generic wont work. OK, she really is ok I guess, and she said she is going to just start a prior auth now because she really thinks it is no coincidence that this changed so dramatically after two amazing weeks.


    I kept waiting for them to say, well this is alittle more than I really thought you meant on the phone...but NO! She said that she wishes the school would have told her about them or that someone would have because they take kids JUST like Q and bring him to them instead of school, they work 2 on 1 and intensively figure out what things are going on and then eventually help place them. They often place where he IS so that is a good sign. But she said they wont even hire people who work in EBD only programs. No way. No consequence/reward programs etc. She said what I always say... EBD and Autism Spectrum Disorders (ASD) do NOT mix. (if someone knows BOTH that is fine, but they really work from the Autism Spectrum Disorders (ASD) perspective) They have a policy that if a child is too disruptive in the class portion of a session (before the therapeutic rec part) they can't go out, but she said that almost never happens because they all have issues in a class and with Q being given a 1:1 that would solve the issue anyway, they would have their own session and then join in... So, it costs about 450 more for a 1:1 and then there are activity fees but they will write it up as fees for classes (the waiver will NOT pay for tickets to things etc.) then it can be collapsed in and they will cover it.

    She said over and over Q is the exact kid they are made for. THey want him to be able to do their drop in classes and overnights too when they know him. They are activities but they still staff it the same as the classes. Still work on goals but work to generalize it. So, these guys get overnights and outings with peers but have their staff and cues right there....seems to go way beyond Integrated Listening Systems (ILS) and Q will LOVE being with kids again.

    I let it all out, every single awful behavior and word he says...she didn't bat an eye.

    I pray it goes well (even said they have had two other brain injured kids in the past couple of years).

    HOPING, PRAYING...... Now, I'm in the middle of no where (yeah this too is on the other side of the world from me but not super far from school) so I am sitting in a public library waiting till I need to pick Q up for his therapy session.

    I have spent 40 dollars in gas in a day and a half. OMG. Glad I just turned in a gas reimbursement form. (the doctor appointment was way EAST of the cities and this is way way way WEST of the cities, LOL)
  2. Liahona

    Liahona Guest

    Are you crying with relief or holding your breath until the fairy tale comes to an end? That was how I felt about the autism preschool. The first place I really felt that my kids were accepted, were helped, and we could relax as a family.

    I really hope this place is as great as they are saying it is.
  3. InsaneCdn

    InsaneCdn Well-Known Member

    Slowly, things are coming together. I like the idea of staggering the patches... so that he doesn't get 4 good days followed by 3 bad days... even if you have to add oral to that to keep it high enough, it will give a more stable baseline.
  4. Malika

    Malika Well-Known Member

    Very good to hear that Q is finally being welcomed and responded to as he is rather than written off and villified as a constant "troublemaker". So much more healthy and appropriate. For you both, actually.
  5. StressedM0mma

    StressedM0mma Active Member

    Yay for Q!! It sounds like things are coming together.
  6. TerryJ2

    TerryJ2 Well-Known Member

    Whew. What a lot of driving and information!

    This does sound good. :)

    Good call on the Zyprexa. People assume that the generic is identical but as you have found out first-hand, that is not always so.

    Could you explain a little bit more about the EBD--what is it? And why does it not work with-Aspies? Because of the reward system?
  7. keista

    keista New Member

    All sounds very promising! :)
  8. TeDo

    TeDo Guest

    YIPEEEEEEE! Sounds like ANOTHER productively good day!! I just love reading posts like this, especially from you especially lately. Can you PM me where this social skills class is? I'm just curious. When you say "way, way, way west", I think "MY far west?" I know.....wishful thinking!!
  9. buddy

    buddy New Member

    Wow would that be fun! It was about 30 miles from my home going down 494 west/a little north
  10. TeDo

    TeDo Guest

    Awwwww......my hopes are dashed.....again...LOL. Still glad it's looking so positive.
  11. HopeRemains

    HopeRemains New Member

    This sounds so wonderful! I am happy for you, dear!
  12. buddy

    buddy New Member

    Well, in our experience (and apparently these folks feel the same) it is a combination of things.

    For one, the kids just think differently so approach to problem solving needs to be so different. Facial expressions to cue to stop behaviors can be so misinterpreted by the Autism Spectrum Disorders (ASD) kids but can be just the ticket for a kid with Emotional/Behavioral Disorders. (that is what we call it here, others have different labels I realize). Both programs can be great! It is just that the mix of kids does not seem to work well as far as I have worked, or as Q has been a part of.

    If you have an Autism Spectrum Disorders (ASD)-er who copies/imitates/is echolalic.... like mine??? Heaven help them. Q learned the bulk of his swear words are from a second grade class where they mixed the Autism Spectrum Disorders (ASD) class with the EBD class to do a "neurobiological" class. Now, that is what Q is in now, but they do it right. This class back then actually called it that but brought all the EBD teacher materials and methods over and dumped the Autism Spectrum Disorders (ASD) supports. No more work task baskets, no more visuals around the room, no m ore individual visual schedules (of course there was a general schedule on the wall), no more direct teaching of social skills, the sensory room was not used for anything but a cool off room or time out room. The whole concept of sensory integration and a sensory diet as a proactive strategy was out the window.

    And yes, there are a ton of do this and if you dont then you wont get to do X. If you can't do Y then you will miss out on the party on Friday etc. Anxiety is raised for my kid anyway with methods like that and he ends up doing exactly what he didn't want to do.

    There are certainly some things that work well for both populations and not every kid from an EBD class does well with those kinds of methods either, I am not speaking to that though. (I have seen a neurobiological approach done so so well, an amazing teacher who used gentle teaching approaches, Autism Spectrum Disorders (ASD) supports etc. for ALL of the kids. The class was outstanding.)

    So, that I think is why this woman said (when I said he had twice been in a mixed EBD/Autism Spectrum Disorders (ASD) class) that one of the first questions that she asks people when she interviews them to work there (I had asked about their 1:1 people)...is where they have worked, if it has been both Autism Spectrum Disorders (ASD) programs and EBD programs she asks, what do you think the difference is? Then if they can describe methods to use with kids who have Autism Spectrum Disorders (ASD) they can continue interviewing. She said if she gets resumes with only EBD experience, or teaching... they dont even interview. I'm ok with that. Q's teacher right now is EBD licensed (there is n o Autism Spectrum Disorders (ASD) license in MN but there is Autism Spectrum Disorders (ASD) certification.) She has a TON of experience with Autism Spectrum Disorders (ASD). The main program coordinator gets it all. I believe they really ARE doing a decent job but I do think they are not quite getting what HIS sensory needs are (they will do classroom things but have no swing or rocker even as a substitute.

    He does have these cool curly plastic (chemicals that may cause cancer later??? can't worry about that right now!) thinkgs like you use on a key chain... but bigger. He wears them on his head or neck and is chewing on that instead of other things and it i s working really nicely. Looks like any other kid who chews on a pencil or something more typical instead of going around and p utting weird things in his mouth.

    (funny though when he wears htem on his head like a rocker's bandanna he thinks...ummmm no.) I gave up on his choosing to wear some unusual things LLLLOOOONNNNNGGGG ago.

    That is not an exhaustive list for sure, but the main things as it has related to us. Not sure it helps much. Maybe others have experiences to share?