Gifted Issues Discussion homepage Forums Twice Exceptional email to 504 coordinator and other stuff

It's likely this advocate may be very helpful - but otoh, you don't need her help at this exact minute - you will need her help when you go through your 504 update (if that's the route you pursue). I would save my questions for her until you have a good idea what is in the neuropsych report, as well as advice on how to communicate your questions and concerns from your advocate. Your advocate will not *make* the communications, but most advocates will give you advice on how to approach the communications, how to word things so that you get the point across that you are trying to make, as well as how to word things to be sure you are as successful as possible in advocating.

Re getting on the "top of the list" for scheduling a meeting in the fall - the way to "get on the list" is to make a written request for a meeting to the appropriate contact people at your school. That puts the school on a time clock. It's doubtful that being in contact with a district advocate will alter the school's schedule at all. BUT talking to your advocate now, getting the neuropsych report, getting any other evals the neuropsych recommends in this summer if possible, and getting a plan together (working with your advocate) to determine *what* you are requesting - at that point in time, you'll be ready to put in a written request, and your goal should be to get the written request for either IEP or 504 in before school starts. I suspect the time clock on the request won't start until the first day of school or at least not until the teachers are back before school starts (because they are included in the meeting), but you can ask your advocate and he/she should know.


I wouldn't assume that any of us here have given you information on a diagnosis - we've just given suggestions and shared similarities in what we've seen with re to our own children or other children. Even those of us here who have direct knowledge of the ins/outs of testing haven't seen your specific chid - and a large part of my ds' diagnosis was based on observations made by the neuropsych *during* testing (combined with the testing results plus a detailed developmental history). Your neuropsych will also (or should also) be able to give you advice on what you can pursue through the school district vs what services/etc your ds will need and most likely won't qualify for through the school district.

Hang in there - you're doing all the right things!

polarbear

Motor planning and binder backpack manipulation.

My son in middle school had to carry a three ring white 3" binder. Every bit of school paper had to be organized in it. It had to be cared in a mesh backpack. I went to the pediatrician and got a prescription orders for "more supportive backpack than a limp mesh backpack due to hypotonia dx". Actually the ped would have written it for every single kid who goes to that school because this backpacks are not good for ANY kid's back. He got to use the good backpack. So the three inch binder....we had the "great binder disaster of 2011". Where he kept dropping the damn thing (remember he has low tone) and all the contents would go all over the place...and the last straw was when he dropped it on the way home...in the rain and everything was ruined. (Remember it was three inches so it didn't fit in the backpack with everything else). I finally got one that was about 2.5" with a zipper that closed it around the edges and a strp for core his shoulder and a handle. I told them to deal with the zippy noise. It was too much for him to carry the white one. And even the most strict of them all backed down because I was completely over the whole binder thing. I personally prefer the each class has a color folder with pockets and space in the center with the clips. Then you keep each folder I the backpack. You can keep an extra on with extra paper and a place for random flyers coming home to parent. But nope...the whole school had to use their system.

Okay...so all that to say that my son had binder problems due to both hypotonia (commonly co-morbid with Asperger's) and motor planning and also due to materials not being a good match to his conditions. Can't fix the hypotonia but I could fix the materials. Didn't cost them anything but agreeing to be flexible.

Eco as usual you have gotten A TON of great info above, I just want to add a couple of little things.

When DD was starting kindergarten in an interdistrict magnet I emailed her teacher explaining her fine motor deficits, that she was working with an outside OT in an effort to get her up to grade level for kindergarten and requesting that she be evaluated for in school services. It was a pleasant, matter of fact email. And it did *absolutely* no good. None. Not only was DD not evaluated for in school services her kindergarten teacher actively punished her for the fine motor deficit. "If she doesn't have a 504 or an IEP and she doesn't complete the writing assignment she doesn't go to recess. Period." When I asked about getting her evaluated for services, or for the requisite IEP or 504 so she wouldn't be punished on a daily basis for something she wasn't physically able to do, I was told (repeatedly) "Oh she'd never qualify - she's too smart."

When sitting in an emergency meeting about a month into the school year I brought this up and the assistant principal running the meeting turned ghostly white. The kindergarten teacher confirmed that she knew about DD's fine motor deficit and that she was in OT learning how to hold a pencil. She told the team that I had emailed her with this information before the start of the school year. The assistant principal turned to her and in a quiet, firm voice said "I need to see that email." Then... Nothing. I continued to be told that DD was too smart to qualify for any services and no in school services were provided.

So why am I telling you this? Because what I didn't know then was there is a certain magical combination of words that was needed to unlock the evaluation and services I was asking for and I hadn't used them. My statements and requests and explanations were crystal clear but I did not use the correct phraseology to unlock the magic door. If these people had used good common sense (or been committed to their obligations under child find) they would have done the right thing. However DD was a suburban kid in an interdistrict magnet located within an overburdened urban school district. They were not going to do a dang thing for her that wasn't absolutely and without question required of them.

What I now know, and what I advise every parent who comes to me in RL begging for help as they start the special Ed process, is go to Wrightslaw and research exactly how to word any request you make. Use the correct terminology. Become familiar with and get comfortable using terms like IDEA, FAPE, accommodations, LRE, etc. it shouldn't be necessary to become an amateur spec Ed attorney but sometimes that's the reality.

Also it's great that you found an advocate. IMHO this is an essential tool. Get yourself familiar with as many terms and protocols as you can before you meet with them but don't take any action yet. Make sure you have a clear action plan in place and know exactly what words to use before you proceed.

4 years ago when I started on this journey DeeDee gave me some great advice. If you can consider hiring out the advocacy piece. This is a marathon not a sprint and it will take its toll on you - physically, mentally, emotionally. psychologically. This is your child and the emotional investment is enormous. If the advocate is an unpaid one and saying they won't "do the work" for you and feel you can't handle a battle yourself it may be worth a few hundred dollars to hire someone. You will still be the decision maker and will still be steering the ship but you may be able to find an experienced person to do the heavy lifting.

Hang in there, I always say it's not an even playing field. School districts have been through this hundreds or thousands of times. They have protocols, procedures, attorneys, professional training. For most parents this is a first time experience and there is a steep, steep, STEEP learning curve. Some districts, like the one where DD did kindergarten, use that to their advantage. Cut yourself some slack, take a deep breath and understand that you are in the learning process right now. You don't have to make all these decisions right now.

And remember that this community is here to help you figure it out.

HTH

You may also wish to get DS' input as to goals.

You may wish to have separate lists of goals to discuss with the advocacy agency, for example:

- Goals for parent
- learning of tests, results interpretation, diagnoses, and appropriate remediation approaches, to feel confident and empowered during advocacy
- learning about advocacy:
-- How to make written request to public school for evaluations
-- How to prepare for IEP/504 meetings
-- How to follow-up on school compliance
-- Forging/maintaining positive relationship with advocacy agency and with school
- Having/developing a Plan "B"... other learning environment alternatives

- Goals for student
- understand diagnoses, assist with prioritizing, provide input to remediation plans, instructional differences, and accommodations
- Goals for measuring success of remediation
- Goal for student to remain in gifted program

- Goals for school
- to comply with request for evaluation, IEP/504 development and implementation
- Goals for measuring success of remediation
- Goal for student to remain in gifted program

Wrightslaw contains much of this information, however it may be helpful to you for the advocate to walk you through targeted portions of the material as they apply to your circumstances. (That's also what many posters are doing here, although the advocate may know your situation better and may be able to advise you more specifically on a number of points.)

Agreed.

Cookie, that binder policy is insane!!!

How many middle school kids can make it through the year without trashing out both binder and mesh backpack?



polarbear

Hey they didn't consult me....for some reason the big bad middle schoolers had to have mesh bags for campus secrurity. I said no way! Someone somewhere came up with the three inch binder system....they didn't have a tiny kid with Asperger's and hypotonia apparently or a clutzy kid without a dx...because you know middle school kids are all coordinated. Really I think I am the one who cried when he dropped it in the rain.

She doesn't, though, unfortunately. She asked me to research and explain and I can't find anything in writing. The only reason I have a feeling the choice program is different is bc the program counselor told me that if DS failed it wouldn't mean anything re: eval since it's a choice program. The advocate is regional, not local, may not know the ins and outs of our specific district. DS' program is housed in another school and they are officially enrolled as students in that school--that might help, I'd think.

Okay, I know this isn't funny but it made me LOL. We had the opposite issue (kinda, but it amounts to the same). Students were supposed to have separate folder for each subject (no binder). When everything hit the fan late fall, I tried to organize DS and found he had something like FIVE math folders. Bc he kept not being able to find his, and so the teacher would give him a new one. Five math folders, each with copies of the same work, over and over and over...so I asked if he could use a Trapper Keeper. The Trapper Keeper annoyed the heck out of one teacher bc he bumped stuff on her desk with it. I think she was mad bc he was being allowed to use his "own system" but also bc she told him to take out the planner (to avoid bumping her things) and he said "I can't." He said "I can't" bc *I* had pretty much forbidden him to remove anything--I think he honestly didn't know what to do in the moment, but she perceived it as defiance.

Also made me laugh bc WE found a huge pile of (wet, rained on, ruined) schoolwork in neighbor's front yard, quite by accident. At that point, realized that DS' backpack had a large slit/hole in the bottom. He had been literally leaving a trail of papers behind him for heaven knows how long--neither of us noticed. That is *our* awful clumsy, binder, backpack, folder (of 2014) story. I'm sorry it makes me feel better to know it's not just us, but it does.

Your mention of low-tone makes me wonder about a few things. DS is a sturdy looking guy but fatigues easily and can't do things like rock-climbing, says he has no upper-body strength. Hmmmm.


Thank you for so many specifics--I'm cut/pasting into word doc. The advocate also asked about DS' goals and input--that is the area that stumps me. He totally shuts down about conversations like this, first works himself up and accuses me of "yelling at him" (I nearly never yell, period) and has very little to say, and then asks me to leave him alone. I'm not sure what he'd say about what his goals/issues are other than parroting back to me what I've told him they are. I hope maybe neuropsych report can help there because I do. not. get. it.


Thank you, it really does help. I would hire that stuff out in a microsecond but I can't, limited resources. So we will have to do with "good enough." At least, I do have confidence I can learn this language--"plan for the worst and hope for the best" is not my native tongue.

A) my DS is also a tiny klutzy kid (but with a dx, just not sure it's the right one), and
B) I've cried a lot more than he has over all of this. The joy of cluelessness is his most special "gift."

They also didn't have a child with any EF or attention issues. Or a tendency to lash out with the nearest object.