Do educators really get it?

iVillage Member
Registered: 04-28-2005
Do educators really get it?
Sat, 10-06-2012 - 9:00am

My DS has hypotonia, and other issues (no cognitive dalays), he's 6 1/2 now.  I have a friend who is a teacher, and sometimes I tell her of the issues DS is having in the classroom with his IEP not being followed.  My friend knows my DS obviously, and has babysat him a few times over the years, so she knows his physical limitation better than most teachers would, but when I mention to her that DS's teacher was making him use crayons instead of markers, making him complete his work to the same level as his peers, she didn't seem to think it was a big deal, and I get the impression that she feels the teacher is doing the right thing by making him work harder.  I am all for making kids work to the best of their ability, but he is physicaly paying for his hard work.  The other night DS told me that his hand and wrist hurt because he did a lot of colouring with crayons, and cutting with scissors that day.  Our OT said that over use of his hands will cause problems later on in life.  DS will not tell anyone but us (parents) that he is hurting at school, so when we tell the teacher is sounds like we just want DS to be allow to slack off.

While DS is doing very well, there are a lot of things they do not see.  For example, while he walks almost normal (appears to have a limp, and "clunks" his feet while walking) by the time he gets to school, they did not see when he first wakes up and has a hard time walking until he finds his legs each morning (some morning are worse than others where he may have to hold on the the wall).



iVillage Member
Registered: 10-09-2012
Tue, 10-09-2012 - 10:03am

No educators do not get it.  You must keep hitting them over the head with it - seriously.  I think particularly when it is an invisible disability.  My son pretty much had a breakdown last year because of it.  This year I have a very specific IEP in place.  I had to fight to get it.  Now if any assignment or test requires writing over 2 sentences my son must have a scribe or be able to give answers orally.  His school is fabulous but they did resist a bit to these accomodations.  I wrote the following email and they stopped resisiting and put the specific changes in the IEP.   Hypontonia doesn't go away - it is not like we are gonna get our kids up to grade level and then they won't need accomodations.  They work on the writing and other motor skills in OT and PT and perhaps in homework and that is plenty.  Here is the email I wrote if it helps you.  Also if you need wording for accomodations, let me know - I can help.  YOu really need to keep clearly and adamently saying that "he has a disbility - it may not always be obvious to the average person but he has one."


"Dear [Special Ed Dir],
I am sorry our conversation had to end so abruptly. [younger ds] has a cold so he isn't being very patient today! I just wanted to follow up with an email for a bit more clarification on my part.
I suspect that perhaps we are all losing sight of the real issue with [DS-hypotonic], which is that he has a disability (albeit an invisible one but a disability nonetheless). The accommodations for hypotonia are not to get good grades or even get him up to grade level. They are necessary to minimize the impact of the disability of hypotonia.

I realize that when looking at an IEP, there's the grade level standard and everything is designed to get a student to grade level. But when looking at ADA/504, which applies to the disabled, and not 'just the below-grade-level-disabled,' the standards are different and the student is protected from discrimination. This means that the student needs equal access to the curriculum. Basically, if a school makes a student write when he has a writing disability, that is not equal access. It's kind-of like saying that a paraplegic IS able to move around the classroom by crawling so why let him use his wheelchair? Never mind the effort expended and the calluses and sores it causes, or his limited vantage point from the floor. 

[DS-hypotonic] has been diagnosed by a neurologist with a condition called benign congenital hypotonia. This is a disability that is not ever really "cured" and one that specifically affects fine motor skills, particularly writing. (It also affects gross motor skills.) [DS-hypotonic's] occupational therapy evaluations (last one done just two months ago) have consistently documented that he is almost two years delayed in fine motor skills and writing when compared to his peers. Thus, when [DS-hypotonic] is required to write, it uses up substantial brainpower and energy that could be used to attend to the question, to think up answers, think up good story lines, etc. He takes so much more time and energy (both physical and mental) than his peers to accomplish just basic writing tasks. Both his disability and his delays is are well-documented. If you would find it helpful to have copies of his OT evaluations and reports as well as the neurologist's diagnosis, I can provide those copies for you.
In [DS-hypotonic's] case, I think we are looking at a continuum of growth. I think generally students with this type of disability move from scribe and oral at a young age to eventually typing on their own or using dictation software so that they are independent. [DS-hypotonic], will make that transition and will develop those skills eventually. I think we need to view these accommodations as accommodations that grow with him rather than supports and education that are supposed to get him up to grade level and then be dropped or that need not be implemented because he is doing so well despite his disability. Honestly, it is my sincere belief that lack of awareness and accommodation for his hypotonia (and his vision condition) are what led to his breakdown last year.
I hope this helps. Thanks."
iVillage Member
Registered: 05-18-2005
Wed, 10-10-2012 - 7:14am

Amen, sister!  My older ds has comparatively mild fine motor delays, and the reams of handwriting assignments have been hell.  I don't even want to think about what it will be like for my hypotonic child when he starts K year after next.  Luckily, we're in a SN preschool where I can get a lot of help drafting IEP specifications.

Gwen (whose hypotonic 3 yo is also sometimes a bit wobbly first thing in the morning)<A href="http://s218.photobucket