Wee seems to have flipped his switch again. And the advocate...

Discussion in 'General Parenting' started by Shari, Apr 29, 2010.

  1. Shari

    Shari IsItFridayYet?

    Last year, it was May 1st when the magical "switch" got flipped and he had no more school problems.

    This year, it appears it may have flipped on April 23. He's had 5 great days at school. No work refusal, nothing. Has gotten more done in 5 days than he does in most weeks.

    So I am withdrawing consent to have an outside agency come in and do an FBA. They were supposed to come on Tuesday (Wee is gone on Monday). I see absolutely nothing to be gained from an outside agency coming in to watch a model student (and when he's on, that's what he is...)

    I emailed the county case manager and the advocate Tuesday and told them, if this run continued, and it appeared this was the "seasonal switch", that I was going to withdraw consent for the FBA.

    Advocate *JUST* informed me that she thinks I'm crazy for doing this (AFTER I withdrew consent). I need her help...but she needs to come spend a day with Wee. A good one, and a not-so-good one. He is not *just* a boy misunderstood by fairly severe learning disabilities, but I really think that's all this woman is seeing! There's more than that going on, and I'm not sure she is getting that part.

    Ugh. I hate conflict. And I need her help.
    Last edited: Apr 29, 2010
  2. confuzzled

    confuzzled Member


    i dont think i'd just withdrawl consent. i think its a VERY bad plan

    i think if he's "on", i'd have him be absent with the sniffles/runs/sorethroat (take your pick of your illness of choice!) to force a postponement.

    and hope the schedule is booked til the next switch flip :D

    sounds like a better way to play their game and seem like a caring, compliant parent to me.
  3. candiecotton

    candiecotton Guest

    If there is anything it is here the refferral process & waiting lists are long we had waited almost 2 years to see G seen by someone who dagnosed her & now shes on another waiting list so who knows how long that will take.
    Dont ask for the assessment to be cancled take help where you can . the agency may see a lot of things you dont see & you could get help faster.
  4. Marguerite

    Marguerite Active Member

    Candiecotton is right - YOU see the perfect child right now, but how long will it last? Also, you are used to the problems and so it is easy for you to see good progress at school as a model child. An outside independent expert, especially one who talks to you and the teachers, will see a lot more.

    We've had people (friends and family, not experts) who say to us, "Isn't difficult child 3 doing well! He is so normal these days!"
    Yesterday we went in to the school and arrived just on morning tea time. Since it is a school with no formal resident students, difficult child 3 was the only student there at morning tea (the staff have one formal morning tea a week on Thursdays). There was another student in that day - a classmate of GFG3s who we know; the lad has cerebral palsy but in no way is a difficult child, he's actually a model student. However, he needs a lot more face to face teaching and is using what he can get as a resource - very wise). He stayed working through morning tea then his teacher took him back a plate of food.

    My point - difficult child 3 met with a lot of staff who don't know him, who haven't taught him. The general consensus from some of them who talk to me whenever I'm in there - "Wow! He's growing up! He's great!"

    Then difficult child 3 had a lesson for several hours with his computing studies teacher who has never worked with him before. She had certain expectations of achievement for the session which were not met. However, they got a lot of work done. difficult child 3 is motivated. HE was keen to work. But he is hard work because of his extreme sensitivity and his distractibility. I'm used to this so I often don't see the source of the problems, I just see the lack of output at times.

    We all left on a happy note, the teacher still happy with achievements. difficult child 3 mentally exhausted (good). But the teacher said to me, "I can see where we've been running aground - I need to make the instructions for him much more specific and not so much free choice."

    I should have thought of that for her, but I didn't because I couldn't see the wood for the trees.

    difficult child 3 is these days a really good kid. But we still use whatever assessments we can get, whatever support and counselling we can get, because there is a lot of overlay and a lot of other stuff now more apparent with the other problems currently in hiding.

    So I would keep the appointment. Make it clear when they are there that he gets these periods of really good application. Then go back through your own notes and find out how many years back this same thing has happened, at what time of the year and see if you can find other links that could indicate a connection. There could be a component of Seasonal Affect Disorder, for example.

  5. Shari

    Shari IsItFridayYet?

    I already canceled the evaluation; right or wrong, I don't know. Maybe it was a bad idea. I don't know. I do know that wee is no different at home than he has been any other time; the difference is at school. And he's done this every year.

    I would love to have these people come in and then get them back if (when) the problems resurface next year late fall. But that won't happen. It was a stretch to get them to come in this time, since Wee's primary diagnosis isn't Autism Spectrum Disorders (ASD). I'm afraid of 2 things...1 being if they came in now and saw a functional child (and he could function mainstream as he is right now - he seriously has done more work this week than he does in the course of a normal month and there is NO work refusal, which was the primary problem since he's in the self contained classroom now), I'm going to have one heck of a time convincing them to come back when there are real problems; and 2, the people that do this are grad students. There is no way in hades I'd get the same people this spring AND next fall, IF I did get them to come back, so the only comparisons would be on paper...and you don't get a very good picture of Wee on paper.

    But that's water under the bridge for now. My screw up. If it is one (and I still think what it probably would have gained us is a group of people recommending putting him back in the mainstream classroom based on what they're seeing now...) But I gotta get the advocate to understand the big picture. The bulk of the people working with Wee WANT to help him; the problem lies in how. ANd if she's gonna operate strictly off paper, I'm not sure its going to help much. She didn't so much as read his file last year, when they were sticking him in the closets...and now, all of a sudden, since he has diagnosed learning disabilities now, he is the most severely impaired kid she's worked with and all he needs is understanding (and last year he wasn't even on her radar).....I truly think all she sees is Learning Disability (LD) and nothing more...and there's more...beleive me, there's more.
    Last edited: Apr 30, 2010
  6. JJJ

    JJJ Active Member

    Have you looked at seasonal disorders? If his problems usually onset in late fall and fade in early Spring...

    Vitamin D supplements (high dose)
    Light Boxes
  7. Shari

    Shari IsItFridayYet?

    SAD has been discussed repeatedly. There is definitely a "cycle" there....what sort is the mystery. But Nov/Dec to Apr/May are always rougher, with an occassional stretch of 4 or 5 days of "good" in there, with the exception of 2005. Not to say there's not rough streaks in May to Nov, 'cause there are. They just aren't as severe, and from the school standpoint, serious behaviors at school are almost non-existent during those times.

    Last year, granted there was a lot of other bs going on that was pushing his buttons, but he had multiple tantrums a day that resulted in the "safe room". until May 1, when it stopped. Literally cold. Same teachers, same classroom, same aids, same everything, but he was not put in the "safe room" a single time after that.
  8. Marguerite

    Marguerite Active Member

    It still could be Pervasive Developmental Disorder (PDD) with an overlay of SAD. I know how incredibly hypersensitive difficult child 3 is to the environment; but he plays so many computer games that he gets an overdose of light, I suspect!

    Just Thursday when we were driving in to the school and got stuck in heavy traffic, we had the car windows down and suddenly the car beside us, right outside the open window next to difficult child 3, had a high-pitched brake squeal. Not loud, but intense. difficult child 3 immediately grabbed his head and rocked, he couldn't stand it. I had been trying to get him to do some bookwork as we drove and he said, "That high frequency sound has set up really bad feedback in my head." A minute or two later he said his vision still had not cleared - I knew the high frequency sounds upset him but I never realised they even affected his vision. And not all high frequencies - only some specific ones. Other loud noises are not necessarily a problem - we have some fairly major thunderstorms here and difficult child 3 has always been fine. And as a baby, he loved bagpipes. Bagpipe music would soothe him to sleep when nothing else would. Oh yes, and Oak Ridge Boys! (I had my good friend, difficult child 3's godmother, leave the house because Oak Ridge Boys was playing and she HATES that kind of music with a passion!)

    SO Pervasive Developmental Disorder (PDD) can be very complex and highly individual in how it affects the child.

  9. agee

    agee Guest

    I always learn so much when I come to this message board!
    My son is having a GREAT week at school and a pretty good week at home. It's actually very bizarre - and unfortunate timing as I finally got a date for our first IEP meeting. I need to remind myself that this is a pattern with him - perhaps not so much seasonal as he has traditionally taken 2 enormous steps backwards before he takes 2 1/2 steps forwards. What we've experienced the last several months was definitely backwards steps.
    I'm also wondering if the medications have finally settled him down. Doesn't sound like that's the case with WEE, but could be the case with my difficult child.
    I'm also hoping they will look at the entire year of my son's behavior and school performance and not just this past week...
    Can you reschedule the assessment in a month or so?
    It is so frustrating to have to deal with people who will make professional judgements on a child based on 1-2-3 hours with him/her.
  10. Shari

    Shari IsItFridayYet?

    My email to the school explained the seasonal pattern and my concerns and I said I wanted to wait on the outside evaluation at this time (I'd talked to SpEd about it, too). The school is not "cancelling" with this agency, just delaying, so I'm happy with that part. Its just tabled, for now.
  11. Marguerite

    Marguerite Active Member

    That's good, Shari.

    Here's hoping you can kickstart an evaluation at the right time for him.