Gifted Issues Discussion homepage Forums Twice Exceptional question about OT

DS is in third grade and has OT services in his IEP. He has DCD and poor motor skills. His classroom writing is very poor or illegible. The IEP team wants to drop direct OT services and do 30 min.per month exploring AT options.

I would not sign the IEP. So now they want a "conciliation conference". They said that they will refer him for an AT eval (after I gave them wrightslaw articles) but I think they still want to take direct OT services out of the IEP.

Am I correct in thinking this is totally inappropriate? An OT would work on the handwriting/fine motor issues, right? If she does not work with him, who would? If this is inappropriate I don't think a "conciliation conference" is going to be helpful. I have already explained in great deal what the concerns are, gave them samples of classroom work, etc. Even his written experssion is going backwards badly. He was doing nicely in first grade when it came to writing paragraphs with punctuation, spaces, main ideas and details, etc. They appear to still be working on that two years later and his writing is now worse!

My options seem to be
1) give up at least the rest of the year, homeschool, and try to work with him myself, getting private therapies.
2) request something like mediation and try to convince or force people they should work with him when they clearly don't want to.

Wow - that sounds frustrating Blackcat!

Have you talked to the school OT? Was he making progress with the therapy?

My DS8 (also DCD) is on a wait list for school OT - we're not there yet. However we did have him assessed privately and our private OT did not recommend handwriting therapy and recommended starting typing and voice to text as soon as we could. But in our case, DS has a pretty good pencil grip. His handwriting is inconsistent - sometimes it is OK (but he often seems to 'draw' his letters rather than print). When he is tired it falls apart and I can't read it. (Although he assures me his teacher can! LOL!)

There has been no testing, as far as I know. They say that he has met his goals, but his writing w/ her may be completely different than when he is on his own in the classroom. However, DS says she is not even working w/ him on handwriting. She is working w/ him on keyboarding. I had requested that they start focusing on AT in an informal conversation, so I guess what she decided to do was stop working on handwriting and work on keyboarding instead. I think both keyboarding and writing goals were in the IEP. So at first she was working on writing but not keyboarding. Then when I asked about keyboarding, she started working on keyboarding and not writing. She only sees him 3X per month so there is no time to really do anything at all, and now they want to drop the 3X per month, even.

So who will work with him on keyboarding then? Is he just supposed to pick that up on his own?

An OT is the professional who would work on handwriting - but one thing that would be helpful before going into this meeting is to have an idea what goals are attainable with handwriting, and that's an issue that might need input from a different type of professional. For example, our ds' DCD diagnosis came from a neuropsych, and her evaluation showed that developing automaticity was the root issue for ds, which in turn impacted his fine motor abilities. Her recommendation was to teach ds how to print so that he knew how to form letters, work with OT to learn correct pencil grip and posture... and then to move on to AT. If your ds' school is ready to drop the OT, you need answers to the question: will further OT generate further improvements in handwriting/motor skills. And it's possible the answer will be no. It's also possible the answer from school will be he's met the IEP goals and you could find a private professional who will work further with him - we had to use private OT because in spite of our ds' challenges he didn't meet our school district's criteria for OT. It was worth it for what he gained, but otoh it the gains were in posture, pencil grip, limiting wrist pain and appropriate pencil pressure when writing. OT was not able to give him functional handwriting.


It's possible he's not making gains in written expression because he's relying on handwriting. It's also possible that he's got additional challenges with written expression (expressing his thoughts, organizing them, etc) that haven't been obvious up to this point because the work hasn't been as challenging, or that have been masked by his handwriting challenges. If he's struggling with handwriting still, he should be scribing or keyboarding for assignments that are anything other than specifically handwriting practice or short short answer questions. You might still see issues with written expression - but that would at least let you know there was more to the issue than handwriting.


We had to go the private therapy route for OT, but our district has extremely low bars to qualify for services. You've at least already qualified for OT, so you are in a position to request it continue if there's a reasonable expectation for goals. I expect that's the sticky part at this point: are the goals you're asking for attainable, and are they goals within what is normally provided by SPED in your school district? Please note I'm not saying a school district can just decide they don't want to provide handwriting remediation, what I meant by what is normally provided is what's within normal level of remediation provided - there is most likely some guideline within the school district of what level of functioning is adequate and services aren't provided to get above that level.

I'm not sure you're at the level of needing mediation yet until you've determined what the potential for handwriting remediation is, and also because the OT has begun to work on AT with your ds. Did you have recommendations for AT and the future needs for AT from your ds' diagnostic eval? Was that eval through the school or private? If it was private and it's been awhile, it might be helpful to meet with the private evaluator for a brief chat to discuss what's been tried, where ds is at etc to see if he/she has recommendations on the path forward for OT/AT etc.

This also may not sound encouraging, and I have no idea if your ds' DCD will play out the way my ds' has (DCD is so different in how it impacts individuals), but we focused on AT and let handwriting go, and that was really the best thing for ds in many respects. For instance, he had to learn cursive at school and he did - he had relatively great looking cursive while he was working on it in school - but after one summer off he forgot it - all of it. Today, he knows how to write his name in cursive, but even that, he has to practice before he writes it. He just had to sign a form for school this week and he had to cross out his first attempt at writing his name because he didn't spell it correctly. He developed legible printing after he worked with an OT, but he lost that legibility not too long after stopping working with her. He does use handwriting for math and some of his science labs... and there are times when even he can't read what he wrote. When he uses handwriting, even if it's legible, it's slow. Incredibly slow compared to age and grade peers. And of course, he's thinking about how to write letters and numbers, not thinking about what's going into what he's writing or spelling or punctuation etc. While it might seem like it would have been nice to have had OT to keep working on his handwriting past the year he was in OT, it wouldn't have mattered. There was a big limitation from the DCD on the gains he was going to make, and moving to AT quickly was really important.

I hope that your "conciliation conference" goes well - we had a really rough experience with our public school in elementary. It's totally exhausting to feel like the school is more invested in a fight than in partnering to help the student. I hope that's not where you land.

Best wishes,

polarbear

I will share our OT journey. Take from it whatever might help you.

I first noticed DD's hand-eye and fine motor issues at 18 months but could not get her pediatrician to refer for an eval until she was 5 years old and ready to start kindergarten. Did OT privately for a couple of years while we tried to get services in school. Private OT had to focus on school related things - ie holding a pencil, forming letters, etc rather than life skills because she could not do K level work otherwise. Once our district evaluated, the summer after K, we were awarded "consult" with OT. We pushed and she qualified for actual services a few months into 1st grade. She started with 30 minutes per week OT services working on handwriting. I requested work on keyboarding but school OT insisted it was "not developmentally appropriate to introduce keyboarding prior to 5th grade." District's director of special services intervened and authorized AT eval late in 1st grade. No time to get it done before the end of year and service not available over the summer so was supposed to be done first week of 2nd grade.

All he!! broke loose at IEP meeting at end of 1st grade with horrible principal trying to do anything and everything she could to make it impossible for DD to remain at local public and district was in total disarray as all top administrator positions were vacated. In the process no one did the paperwork to get AT eval done. 2nd grade started with district realizing they had created a huge problem for themselves and getting DD services became a top priority. Even so it took most of 2nd grade to get AT eval completed. 25 or so page report - very detailed, very specific. OT was wrong - DD was in desperate need of keyboarding instruction along with handwriting work. Services started the last weeks of 2nd grade but OT was reluctant...

3rd grade started OOD at spec Ed school. I argued that DD was entitled to compensatory services to make up for the lack of appropriate OT/AT services the previous year. District couldn't defend their actions and agreed - 3 1/2 hours of OT per week, split between handwriting and AT. Nearing the end of 5th grade now and the 3 1/2 hours per week if OT is still in place. In 4th grade they switched to cursive to see if that helped as some dysgraphic kids find it easier. OT will likely be reduced for next year as OT feels DD has made as much progress as she can with handwriting and is now functioning independently on AT front.

So no - I would not agree to dropping OT. I would insist on a valid AT eval. If they won't do it I would request IEE.

No they don't get to just remove these things from the IEP. His needs don't disappear just because the district doesn't have the right staff to meet his needs. As DeeDee has told me before "need drives services not the availability of providers." This is a *very* important point and many districts don't think parents understand it so they take advantage.

This is when you request an Independent Educational Evaluation (IEE). If the need is real and documented they have to meet it. Like the awful principal I referenced above some districts just work to wear you down so you move, place in private or choose to homeschool. All are fine options for them because it gets them off the hook. If you are able to meet his needs yourself then homeschooling could be a good option. I was told by my district that there would be no way a private family could afford to provide all the services my DD would need. It takes a strong constitution to keep battling in the face of what seems to be intentional incompetence. Your district seems to be masterful at that...

Hang in there!

Found progress report.

Academic/Written Expression

Objective:
Given a story starter or writing prompt or idea, DS will write 3-5 sentences with correct spelling, capitalization, and punctuation on 3 out of 5 trials with 3 or less adult prompts

Given a typing program, DS will locate all letters w/ primary punctuation marks on the keyboard while holding home row position on 3 out of 5 trials with 3 or less adult prompts.

Goal Met.

OT updates:
DS has shown progress toward his goals pertaining to writing. With use of writing prompts/tools, DS is motivated to begin work post encouragement. DS has been presented w/ the options of eitehr using technology to complete assignments when working w/ OT or writing in a shaded notebook--where line space areas are an interchaging of white and blue. DS appears to alternate which medium he elects to use when producing written assignments with OT. Additionally, DS has used raised red and green lined paper to improve legibility of written assignments.

DS has additonally been introduced to Keyboarding Without Tears and has been able to type 12-14 words per minute with 94 percent accuracy. His personal goal was to achieve an accuracy rate of 100 percent which he was successful in attaining. DS has used shaded notebook paper to complete written assignments with OT--as the shaded paper enables him to track his writing and assists in his ability to read his own writing more efficently when completed. The slantboard has also been used with DS, as it allows him to copy and write work more effectively, without losing track of where he was when transitioning from material to be copied to his own written work.

Strategies that have worked well with DS sayed focused on specific tasks and for sensory regulation have included: doodling, mouth tools (mints) and water bottle for drinking.

--------

A couple notes: in the meeting, they said that DS does not use the slant board.

I don't think any special lined paper is ever used for classroom work, but he is pulled out every day for written expression.

Classroom work looks mainly like filling out printed worksheets. With most of them there are just big blank spaces to write in.


So, what should I suggest to change this? If no one can actually read his classroom work, he is not functional. I think he needs to work on fluency. His alphabet letter fluency (tested informally here at home) is about 24 letters per minute, which I'm guessing is not very good. He started off good but then completely zoned out and he would sit there and stare at the paper for 3 seconds before writing each letter. The focus used to be that he would use punctuation, captital letters, spacing between words, write on lines etc. but in his actual classroom work he is not really doing that. Like I said, it looks exactly like preschool writing that is coming from a 4 year old genius who knows how to spell complicated words.

His actual letter formation looked Ok, just uncoordinated, like things weren't really matching up in the right places. Like a "b" where the circle and the stem don't necessarily connect in the right place (the circle was on the middle of the stick rather than on the bottom).


I wanted to add that DS's disability category is "Physically Impaired" which seems to be very flexible in terms of what services he can access (Thank God!).

spaghetti, that sounds terrible. What the heck?

blackcat, a lot of what spaghetti wrote rings true for what appeared to be happening in our district when our ds was in elementary school and we were fighting for services. One thing that helped us put our situation into perspective re what we could get from our district and how to get it was the advice of a local parent advocate - do you have a parents' advocate group in your state? We found ours through the yellow pages at wrightslaw - there are groups in at least several states that are funded through Federal $ and don't charge for advice. The key for us was that the advocate was working with our school district specifically and therefore had local knowledge of each school - so she could tell us, this is what's going on with staff, funding etc at this specific school, and this is why you're running into roadblocks. That helped me tremendously in determining how to go about advocating.


I think it's really important for your ds, at this point, to understand if further OT is going to help with handwriting. You clearly have a battle in front of you for services, and you want the services to be services that make a difference rather than trying and trying to make something work that might not ever work.

I don't know of any specific testing that will tell you whether or not your ds will ever be able to master functional handwriting. I think that knowledge is more of a judgment call based on the nature of his disability. Does he have automaticity of other motor skills? Did he have DCD prior to his TBI, or did the TBI cause the DCD? What do his doctors/neuropscyh evals/etc say about his prognosis for developing automaticity of handwriting?

Re "other life skills" - things like tying shoes, fastening buttons, direction of left vs right etc - are those things he's mastered or he still struggles with? These are all things that took my DCD ds a long time to master, and that, although he can do them as a teen, they aren't "automatic" as they are in most people. If you ask him, he'll tell you he has to think about how to do these tasks each time he does them. He also still has to remember how to form each letter and number - he sees it as "memorizing" whereas most people learn how to form the letters and then it just happens as you write. If your ds is having those struggles with automaticity, it's probably more beneficial to put the extra time with an OT into AT. Would I have had the knowledge to make that decision on my own without professional guidance when my ds was in third grade? Honestly no! But ds neuropsych was able to make the call based on her collective knowledge of DCD and her review of ds' testing, observing his handwriting, and reviewing examples of his classroom work.

Aside from automaticity of handwriting, you need to have a good feeling of whether or not the act of handwriting is taking up all of his working memory at the cost of other functions such as ability to focus on spelling, punctuation, grammar, thoughts and ideas.

If his prognosis is difficulty with developing automaticity (which is the case for some kids with DCD), and/or the act of handwriting takes up his working memory at the expense of other tasks that must occur at the same time as handwriting, just my opinion, but I would move to AT and drop the handwriting OT.

If you have reasonable expectation that handwriting can become functional, then continue to push for the OT... but include handwriting accommodations for classwork while OT is ongoing. Also watch out for handwriting speed. You have a measure of speed from the OT, google the number of letters per minute + grade level and you'll find a bunch of different studies showing what is considered to be typical. You can also test the number of letters per minute at home to see whether or not the OT's estimate seems accurate: have your ds write out the full alphabet, upper and lower case, and time him, then divide to get letters per minute. If he's below grade level on this count - even if he is forming letters ok and there are no worries about grip, etc or memory being impacted while writing, you have valid data to argue for OT for AT.


I don't think anyone ever expects parents to come well-prepared to these meetings with arguments that make sense and things like classroom work samples. The school is most likely hoping that you'll come just to listen and they prepare the case they need with the examples they need for the outcome they need - which in this case (and our case) looks like the school doesn't want to provide services (for whatever reason). The thing to keep in mind as you plow forward is - you can't really (usually) know what the motivation of individual people at the meeting is. The OT may sound like she thinks everything is hunky dory and she's written up a report that is ready to exit your ds from OT, but it might not be the OT who thinks he's ready - she could be being pushed to do so with her students by the school's administration. We had that happen with both our school's OT and ds' teacher. The teacher and OT could see ds' limitations, but they had people above them who had power over them who were directing them re what the school could and couldn't do, and directing how they were to approach these meetings and reports. What worked for us was to just listen to those reports or examples, then repeat what we were requesting with the proof that the request was valid. We only requested things we knew the school district routinely offered as services or accommodations etc. The school team knew where they were treading on water they couldn't defend if we were to take legal action, so if we (parents) knew enough of what to insist on and didn't back down, the team gave in. Ridiculous way to deal with the needs of students, honestly, because there are so many students (at least here) who have needs and also have checked-out or uninformed parents, so no one to advocate for their needs.

If this meeting doesn't go well in terms of continuing the services your ds needs, I'd recommend requesting an IEE - you need to have a thorough understanding current functioning vs challenges vs future limitations on progress are in order to make a valid plan for remediation and accommodations.

I am so sorry you've had to face so much resistance at more than one school! These are tough times for school districts as well as parents - it doesn't make what's happening "right" but it's also what it is.

Hang in there -

polarbear

The thing is, he already mastered functional handwriting in first grade. He was writing on the lines, it was legible, and if anyone had seen it and compared it to the other kids it probably would have been in the lowest third of the class but no obvious disability. But he was getting OT at that time which worked on practicing the letters and writing fluency. Since he's not doing that anymore, I think he is forgetting the motor sequences involved in writing. At age 4 he learned how to skip. But I don't think he could do it anymore, or it would look awkward, because he doesn't do it regularly.

I found this article, which I will share w/ them. Talks about student needing remediation and practice, not just accommodations.

http://www.ldonline.org/article/5890/

What they did, is they taught him the skill but as soon as he learned it, they dropped it. Then he forgot it.

He had DCD before the brain injury but I suspect the brain injury caused a regression. For instance at age 2 he could hang from a bar. But since the TBI he has not been able to do that. At age 4 or 5 he could do sit ups. They are still working on that in DAPE. It is hard to say what exactly the regression was because he was tested on two different tests before and after. But he had been exited from private PT before the TBI because he was testing in the average range. When he qualified as PI a year later, he was, I think, below the 2nd percentile for gross and fine motor. Fine motor, as in putting pegs into a board, was horrific, like .0001 percentile. I don't think he could do it at all. That was 5 months after the TBI.

He is Ok with buttons but the shoes are never tied quite right.

When he holds a pencil, he is not holding it near the tip. He is holding it about 2 inches above the lead. Not exactly conducive to good penmanship, IMO. I have tried to address this with them. I have asked about 10 times for them to give him short pencils and have offered to saw pencils in half and bring them in. They are simply not going to give him these pencils or make sure he uses them. In his IEP it is always "he will have access to modified pencils" (however if I asked DS where these pencils are, he would have no idea what I'm talking about).

i don't know if i mentioned in my messages that i arranged for the conciliation conference to be just me, Dh the case manager (special ed teacher) and principal. I am going to tell them what I know, tell them that one way or another he is going to need services from someone who knows what they are doing, and see what their response is.

The SLP seems very resistant to the fact that we want to drop social skills group so I'm guessing it's not an across the board "get kids off services" but it's quite possible the OT has too many kids on her caseload or they are worried about staffing next year.

Just to piggyback on Polarbear and spaghetti...

I started asking in 2nd grade if it was a good use of time to keep working on DD's handwriting when it was clear this would never be her primary means of communication. To me it seemed like the time, energy and resources would be better spent getting her up to speed as quickly as possible on AT. OT was adamant - and the rest of the school team backed her up - that they had to push handwriting in the early grades or she would never have the opportunity or incentive to learn it. I asked again in 4th grade but DD herself insisted at this point that she felt she needed to be able to write at least a brief note in case she ever found herself in a situation where she didn't have access to technology. Everyone's eyes filled with tears when she said "Mom you can't run away from your problems. You do understand that - right?"

So it's a balancing act. Yes they need functionality but really as technology continues to improve handwriting will become less and less of a skill set needed to function in everyday life. Just yesterday something came through my Facebook feed along the lines of "Cursive - one day soon it will be the secret language of older generations."

Oh and to spaghetti's point - I am most definitely the squeky wheel who gets the oil. Frankly I barely have to squeak at all anymore - I just ask questions. I don't fight for trivial things and I have proven myself over and over again. Some fear me. Some despise me. Some are entertained by me. But I think all respect me and the battle I have fought for my child. As awful as our situation was with the horrible principal and the district being in chaos allowing her behavior to go unchecked it all really worked out to our benefit. They behaved SO badly - and I reported it to DOE - they couldn't defend themselves. No one - not them and not me - wants to go down that path again. Now people who know me or DD's story are telling me that the district is approaching them with 2E identifications and offers of services. But the key was research, tenacity and not blinking.

If your district already has 4 lawsuits pending things could get very interesting. Check out Darien, Connecticut. A few years ago 24 families joined together to sue and were able to demonstrate an intentional plan to circumvent special Ed laws and keep parents out of the process. State and federal DOE intervened. If those 4 families in your district are using the same lawyer it could be worth a phone call. You can usually get a free consult and your story might bolster one of their cases...

They aren't actual individuals, they are actually parent groups fighting school closings that are taking place because of corruption, and in one case a disability advocacy organization is filing a suit on behalf of multiple parents in terms of special ed. We are past the statute of limitations (unless you count the possible violation with them not making an eligibility decision after the IEE). The district has a terrible track record in terms of filed complaints.

Anyway, I told DS to write a story here at home to see what it is he can actually do. I gave him a simple template with things like characters, setting, problem, etc. His written draft of the story is very poorly done and illegible. I told him to proofread it, make some changes and type it. He needed a few prompts or reminders like "Do you have all the capital letters you need?" but the final product was a couple paragraphs and nicely done. Took maybe 30 min. from start to finish. So given that info, I decided to try to write some goals. Their goal for him is to write a paragraph w/ a main idea, details, 3/5 times with 3 or less prompts but that comes across as kind of ridiculously easy to me.
Can anyone help me write some goals? Because I will obviously have to write the IEP.

Written Expression:
--DS should independently complete a graphic organizer for each assignment requiring organization of ideas on 4/5 trials with 1 or no adult prompts. (graphic organizers should be expected for each assignment, not optional).

--DS's written work of one or more paragraphs should be typed, proofread, and edited for correct punctuation, spelling, and capitalization, and spacing on 4/5 trials with 1 or no adult prompts.

--DS's will improve his alphabet writing fluency with legible, correctly formed letters to 40 letters per minute on 4/5 measured occasions.

--DS will increase his typing speed to 20 wpm using correct finger placement on 4/5 measured occasions.

Functional:
--DS will use modified paper such as graph paper or lined paper turned sideways to do math calculations (those that are inappropriate be done mentally or with a calculator) with 1 or no teacher prompts on 4/5 measured opportunities unless other assistive technology is used for this purpose.

(can math worksheets or tests with space to write be copied onto modified paper?)

--DS will begin his assignment in the regular classroom within 5 minutes with 1 or no adult prompts on 4/5 measured opportunities.

--DS will continue working for 10 minutes with 1 or no adult prompts in 4/5 measured opportunities.

spaghetti, I don't think it is as automatic as it should be. When I observed his alphabet writing he was fine for the first 10 letters or so, then it was like his brain shut down. I am wondering if it will become more automatic if he practices more, but since first grade, no one has done anything with him. His cursive writing is painful to look at so I'm debating asking if they can put that on hold and focus on the printing again. Just a few minutes at a time. I just feel like we are giving up too soon, considering no one has had any expectations of him in the last two years and he really hasn't been working on handwriting other than a couple words in his planner each day and a worsheet here or there.