Things just getting worse with Wee....

Discussion in 'General Parenting' started by Shari, May 16, 2011.

  1. Shari

    Shari IsItFridayYet?

    He is absolutley petrified his teacher is leaving, and he'll be stuck with his aid. To the point he's hating the aid.

    I don't know if its a valid feeling or not, but its where he's at. I do know the aid is not always following the BIP, and I sent a letter to the powers that be to address that. but frankly, we don't have time to sit back and wait and see if that's it or not. We have 11 days of school, and will be relying on this aid to set the tone for next year. And right now, he hates her.

    I have requested we go back to the aid being with him all the time. That's the way it was at first, but the district can't stand to see "wasted people", so at the last meeting, she was pulled out when Wee is with the SpEd teacher. So she comes and goes thru the day instead of being with him all the time. I have no idea if this will fix it or not, but again....11 days. Doing nothing will most likely gain us nothing. And nothing is what they've done so far.

    Please say a little prayer for Wee. If this year ends in disaster, even though most of it has been SO good, it gives me very little leverage to move forward with.
  2. AnnieO

    AnnieO Shooting from the Hip

    Poor sweetheart (both of you)... How is that "wasted"?! Ugh. Praying!!!
  3. TeDo

    TeDo Guest

    I feel so bad for Wee. Can you talk to the SpEd teacher and BOTH of you go to the powers that be with the argument that having the aid with him all the time for the next 11 days is to ease the transition into next year?

    Praying for you both (and pretzeling too).
  4. InsaneCdn

    InsaneCdn Well-Known Member

    End of year burnout? We've got one where that's definitely a problem. Sept = the best they will see all year. Jan isn't TOO bad after the 2-week break... if it goes right. From there... its all downhill. (except we've learned how to change the angle, so he doesn't usually go off the deep end until 2 weeks after final exams... which isn't so big a problem in July, but causes huge issues in Feb when post-exampe blow-ups and new-term start-ups collide!!)

    Too bad there wasn't a way to see this coming and end his year early? But you don't want to end on a bad note, either.

  5. Shari

    Shari IsItFridayYet?

    I flat put the request in writing yesterday. I don't expect much, but we'll see. We made it thru yesterday relatively ok.

    Insane, the problem is that he gets SOOOO worked up about transitions and changes. He frets himself silly if he doesn't know what's coming, and even though we can tell him whats going to happen, its still a big black hole of unknown to him til he gets there. He's currently upset by the principal leaving (tho the rest of us are happy about that), and he has very little interaction with the principal....but its change. And he hates change.
  6. shellyd67

    shellyd67 Active Member

    pretzeling all my body parts and rattling beads as well ... I sure hope it all works out for Wee.
  7. InsaneCdn

    InsaneCdn Well-Known Member

    I know. We have one who is in complete knots now - until the end of the year - because he doesn't know how finals will go, AND is concerned about the transition to summer holidays.

    When we get past June, he will be in knots for the NEXT two months in anxiety over the transition to the start of the school year again.

    And ours is 2x the age of Wee...!

    But - it is getting better. Really. We're finally getting to the bottom of a raft of diagnosis'es... and the more we discover that is accurate, the more K1 is able to handle life... including transitions... maybe. We'll have to see what happens THIS transition period!

    Others probably already know this - but what kind of list of diagnosis'es does Wee have, anyway? I'm with you on the "anxiety" thing - that and ODD and even depression can be purely secondary (caused by other needs not being met)... and if they are, we can't solve them until we deal with the other needs...
  8. Shari

    Shari IsItFridayYet?

    Oh, gosh, perhaps its easier to list what he isn't diagnosis'ed with. j/k - that's not true at all.

    He is currently diagnosis'ed with dyslexia/dysgraphia/dyscalcula (severe), Central Auditory Processing Disorder (CAPD), and working memory issues. He also has diagnosis'es of intermittent explosive disorder, ADHD (severe), Asperger's, bi-polar, and disordered attachmen. Any one of which can be argued for or against, depending on which professional you are talking to.

    Oh, forgot sensory issues.
  9. InsaneCdn

    InsaneCdn Well-Known Member

    Let me guess...
    ADHD includes executive functions, right?
    Central Auditory Processing Disorder (CAPD) and working memory issues... can be either/or, or both...
    LDs all have to do with reading/writing...

    Hmmm... sounds a bit like K1!

    So, it begs the question... which parts of Asperger's are they reporting? There's a raft of stuff in there, including motor coordination problems - I'd be curious to know if that's factor.
    Sometimes what is really Obsessive Compulsive Disorder (OCD) shows up on the Aspie scale.
    Does he like to be around kids that are younger?

    What have you had for testing? (besides a huge pile...) as in, who's done what, and how long ago?
  10. Shari

    Shari IsItFridayYet?

    Well, for starters, Wee is 9 now. I need to update my signature. I'm sure I'll forget some pieces, but in a nutshell...

    I joked with my ob that he was "very active in utero, could we start him on ritalin" at 5 months. He was an extremely easy baby - didn't like to be held a lot, loved to just sit and watch the action, until he was mobile, then all hades broke loose. He would speak words here and there, but never sustained them. Three weeks and it was gone. Same with waving, did it, then quit. Learned to walk at 8 mos. Started trying on a Thur and literally did nothing BUT until he mastered it on Sat. That's the way he did everything - to extreme. Once walking, would not crawl AT ALL for 6 months.

    Oh, seizures - first one at 6 months, but nothing diagnosis'ed til much later (he has complex partial seizure disorder, also - forgot that one). I have only seen a couple of them - witnesses have been other people.

    Sitter addressed "concerns" at 14 months, so we took him to the pediatrician. Pediatrician dismissed concerns at 14 months and again at 2. Said there's nothing to do til he's in school and having problems. Found new pediatrician between 2-3.

    Took older brother to a counselor with Wee in tow (I have 2 older boys, also. One was also a difficult child (difficult child 1) - living successfully now - he's 22). Counselor was fascinated by Wee's behavior. Asked if we could talk about him, suggested Pervasive Developmental Disorder (PDD), referred us to a developmental pediatrician and early education program. Thus started the process.

    He has had three neuropsyche evaluations. Regularly sees the devped. Also had in-home behavior therapy (IHBT) and behavior therapy in a clinic setting. Occupation therapy for sensory issues. Has seen 2 psychiatric's - last one has nothing more to offer at this time, so is just "on hold". After 3 years and no real answers from devped, I started looking for a new one - put ourselves on waiting lists anywhere within an 8 hour drive of our home. First one to have an opening was in Oklahoma, so took him there. They picked up on the dyslexia right away. Had thorough testing done there by speech language pathologist and continued to see the devped there (and here - working together) until that doctor was no longer available.

    Had Central Auditory Processing Disorder (CAPD) testing done about 18 months ago at state school for the deaf.

    Judevine evaluations x 2 (I'm so done beating the autism horse, quite frankly - half his "team" says he has it; the other half doesn't. I just say he has a lot of traits and leave it at that.)

    And saw the same neuro from 6-months until this last year, with one second opinion thrown in, and now we have transferred that care to the second opinion doctor.

    Oh, he's also had a sleep study and thorough allergy testing. Sleep study tech noted "irregular sleep patterns" but doctor that read it said there was nothing remarkable. Allergist put him on a pulsox for several days and he appears to have sleep apnea, but have not been able to confirm that and not sure how, or if, it plays into this.

    Started early intervention preschool at 3, was a stellar student there. School refused to implement supprts when transferred to public school, so placed him privately in a smaller setting for K. Worked well til he had an old school marm teacher that refused to accept he had any issues that she couldn't beat out of him, and she threw him out (we could have challenged it, but who wanted to waste that energy) the last day before Christmas break of 1st grade. He started public school after break of his 1st grade year. Has been a disaster. He attended 20 days before they (illegally) reduced him to half days, and their biggest "tool" of that year was sticking him in a closet. We are a very small, rural district, so no other options for schools except to move, and I'd be all for moving if someone could tell me where to go that COULD/WOULD deal with him...not a maybe.

    That's a very summarized nutshell version of this. Obviously, he's had all the school evaluations, too, starting when he was 3.

    Trialed various ADHD medications - all have been a disaster. Ritalin was THE WORST. Wee has been in the waiting room at the ADHD clinic and the other parents there have commented on his activity level...and Ritalin acted just as speed would in made the kid who already goes a hundred miles an hour go a million. Others have been equally disastrous. I have doubts about the ADHD diagnosis. Something else is going on.

    Tried risperdal the first time at 3 and the first week on it was absolute heaven. For the first time ever, I sat on the floor with my son and cut, colored, and pasted and played real, deliberate play. By 2 weeks, that effect was gone, tho. We started it again a couple years later for aggression, and it did curb aggression, but never saw that little "window" again.

    Oh, also diagnosis'ed developmental delays, and motor coordination disorder. Fine motor is a problem; gross motor, for the most part, was WAY ahead of schedule. He was jumping from objects 4-5ft high at 18 months (without hurting himself), and riding his bike on his third birthday without training wheels. But he still can't jump rope or write legibly.
  11. InsaneCdn

    InsaneCdn Well-Known Member

    Interesting thing with Developmental Coordination Disorder (DCD) (developmental coordination disorder) is that it can be more global (issues with all motor skills), OR it can hit JUST fine or JUST gross skills... Thus, we get the sports star who is kicked off the team because he's failing English - and he's failing English because he can't write! (Conversely, you can get the absolute klutz who somehow is a whiz at writing... somehow, these fare better in life in the long-term... society has come to accept that not everyone is athletic, but if you can't do the 3Rs, you must be really stupid).

    So... how was he... learning to tie shoes? doing buttons? knife-and-fork? scissors? If those ARE a problem, then part of his writing problems are likely motor-skills related (hands can't but brain could). If those are NOT a problem, then its more directly a Learning Disability (LD) - his hands could but his brain can't. (or you end up like us... with BOTH)

    We don't have to deal with seizures, so not sure how that plays into all of this - but it will definitely be a complicating factor!
  12. Shari

    Shari IsItFridayYet?

    Oh, def has motor problems.

    He learned to tie his shoes about a year ago, and still can't do it well. He can use scissors, but no where near where he should be with that skill. Only wears elastic waisted pants because he can't do buttons on anything remotely "tight" (and sensory = very picky about fabric). Took us 3 years to get him to wear shoes, still doesn't wear underwear. Spent about 2 years wanting to cut his penis off, largely because it was so sensitive to clothing.
  13. InsaneCdn

    InsaneCdn Well-Known Member

    Then I'd toss in an informal diagnosis of Developmental Coordination Disorder (DCD). Trick is... these traits CAN be part of the Asperger's thing as well - as in, Developmental Coordination Disorder (DCD) is a non-pervasive developmental disorder; Asperger's is a pervasive developmental disorder. The assumption is, if you have Pervasive Developmental Disorder (PDD), then the non-Pervasive Developmental Disorder (PDD) diagnosis are over-ridden by the Pervasive Developmental Disorder (PDD). But I find it helpful to keep the Developmental Coordination Disorder (DCD) label and use loosely when trying to describe his issues to professionals (medical or school).

    So - has he ever been seen by an Occupational Therapist (OT) (Occupational Therapist)? these guys don't do diagnosis - they just find ways to make things work better, and when that doesn't work, they find alternative ways to do things. Their testing results can also be useful to other professionals. Includes sensory issues, too.

    by the way - if there IS a Developmental Coordination Disorder (DCD) component, that's actually good news - with intervention and lots of practice, and the miracle of time, a fair bit of this can be overcome - and the rest, they can learn good "management" techniques. Its worth getting interventions...
  14. Shari

    Shari IsItFridayYet?

    He carries a similar diagnosis - I think I threw it in in the jumble that was my response. There's no doubt there a developmental delays that affect his motor skills.

    He saw Occupational Therapist (OT)'s privately and fairly intense from age 3-7. Both Occupational Therapist (OT)'s at that facility left. He is on the waiting list for another facility. He recieves Occupational Therapist (OT) in school, also, but its maybe 75 min a week and they just focus on mostly keeping his "wound down" enough to stay each day.

    We don't have a lot of issues with him at home anymore. Mostly just school, and in my humble opinion, they bring it on themselves. We know what works. They don't want to pay someone to do it. I have been in an on-going "locking of the horns" with them for the past 3 years. This year, they brought in their attorney in response to my (requests (more like demands)) and this year has been better, but still more room to improve.

    Occupational Therapist (OT) is what gave us socks and shoes. Lots and lots of Occupational Therapist (OT) to get those.
  15. InsaneCdn

    InsaneCdn Well-Known Member

    Not counting the other diagnosis'es... the motor skills issues alone are enough for school to drive him around the bend. Between learning to write, and writing to learn, and teensy-weensie "manipulatives" for math, and craft project after craft project... School places a huge premium on providing plenty of opportunity for students to learn fine motor skills. The problem is... they have become so ingrained in this that they have NO idea what to do with the kids who can't do these things!

    It does get better... but not fast enough. We were still fighting that one right through last year. Now, in high school, the volume of all that fine motor stuff is way down (no time-filler projects!), teachers are open to alternatives (yes, you can use the "paint" program and MS Project, instead of drawing on paper...), and the kid has matured enough that his motor skills can handle a little bit of this stuff!

    I'm still thinking...
  16. Shari

    Shari IsItFridayYet?

    Wee is all but entirely self contained. He attends some specials with his peers, and math in the mainstream room as he feels capable. Largely, he just can't handle mainstream, and when he does, he is not capable at this time of learning in that environment.

    This is the first time he's had a teacher that truly knows how to work with him and who has been HUGELY successful with him. He has increased his academic ability 500% this year alone, and it has been a shortened year. Unfortunately, she is leaving.
  17. InsaneCdn

    InsaneCdn Well-Known Member

    good teacher... leaving... been there done that...

    Get her to document like crazy - every idea she's tried, whether it worked or not - we found that the "not-working ideas" list was actually more important, as it kept the next teachers from trying the same stuff over again!

    Next layer on the motor skills stuff... is fatigue. Comes in three flavors... physical, mental, and emotional. For our kids, its never ever just one of those - its at least 2 out of 3 and usually all of them!

    But seriously... we got nowhere until we (without the support of any of our specialists) made fatigue into enemy number one. We changed our whole family schedule, and pushed back against school, family and friends (and specialists) until we beat the fatigue monster back into submission... he is now on top of that one, having caught up from accumulations of fatigue, but we keep a close eye on it. Don't use "tired". Its a word that the outside world will push back on. Keep in mind that mentally, he is probably spending 20x the effort on every little motor-skills task that he does do... so, "shoes and socks" for him is kind of like you doing the same thing 20 times over (only not quite... there is a physical part, and a neuromotor part, and its the neuromotor/brain part that wears out, not the muscles! so, your muscles might give out before doing it 20x...! lol)

    When they are under a physical and/or mental load, then the emotional load is almost impossible to cope with. We were dropping off the edge of a cliff - going straight down with no end in sight but knowing that at some point, we'd be going "splat" at the bottom... Now? we get the emotional factors going, and we immediately flag "fatigue". Change task list. To bed early. Other relaxation stuff... whatever it takes to beat the fatigue monster back. And we're winning. But there is no magic formula here - you have to play around with it and find what works for this particular kid.
  18. Shari

    Shari IsItFridayYet?

    I've called a meeting to do just that. In true form, the district is "working on it". They've been "working on it" for 2 weeks. 11 days til school is out, and we haven't even discussed ESY, which was also part of the request for the meeting....

    We use the same tactic with him, also. Everything can change at the drop of a hat if he's not in a place to handle something. And often does. The teacher gets it. Others? not so much. They think just because he could do it yesterday means he should be able to do just that, just like that, every day, every time, repeatedly, going forward. Doesn't work like that.