Gifted Issues Discussion homepage Forums Parenting and Advocacy UPDATE: Teacher disciplining disability AGAIN

Well I think the old Psych is a strike out.. I expected it might. He's very pro-teacher (was one for a long time) and is used to working with older kids so very suspicious that he's not getting the full story. He doesn't have children of his own and also doesn't seem to "get" testing that well. He's catching up to speed but I'm not feeling like he is on board. He wants to "keep DS in school".

We will talk again in the morning followed by DS going to the new doctor followed by meeting with the advocate.

Teacher just sent home an email complaining that children did not do the writing assignment she gave yesterday and saying the children must fill out their scholastic book orders themselves to turn in tomorrow. UGH! More writing.

Irena, are EDS and other connective tissue disorders diagnosed through actual genetic testing, or just through physical exam?

DeeDee

I will answer this one. It depends on which connective tissue disorder.

Some variants of EDS can be identified with genetic testing and some can't - yet.

Ditto. I ultimately took DS to a geneticist at the Children's Hospital of Philadelphia connective tissues clinic.

Even those that don't have a gene test are still diagnosed by a geneticist.

I have EDS type III. There is not currently a genetic test for this type. I was diagnosed by a geneticist after a very detailed medical history intake and physical exam.

My friend and her children have Marfans. They were also diagnosed without genetic testing. She had been given the run around by doctors and school personnel for years when she finally found a doctor that took her concerns about her son's development seriously. He was diagnosed with Marfans and experienced his first of two aortic dissections a few months later.

So would you bring this up to a general practitioner or search out the geneticist?

Happilymom have you read about EDS and other connective tissue disorders? It helps to know if you think it fits before talking to a generalist who will almost certainly have no clue and be sure it's not that.

I have been reading up on it. Some things seem to fit but it's not very clear cut. There is a pediatric geneticist I've found...

I've been doing a lot of thinking. Spoke with Dr. Amend (our tester) who has been amazing. I'm feeling like the situation at school is so bad and my guy is so young that I don't see how it will be salvageable or worth the cost (advocates and much more mental health appointments and stress for all).

I believe he is a hard fit with willing instructors which we do not have. All of his diagnoses have occurred in the past 6 months and we are still learning about them and what works.

I'm questioning how much improvement in that environment could be possible with even the best advocacy. The level of stress (and damage to my child)to get there seem like a much higher cost than I want to pay.

There seem to be more options and more expectation of the use of technology with age and finally elimination of coloring. Their 1st grade program is shockingly unacademic and seems behind the times. He needs to learn to type and use a dictation program. He's just too young to be put at the mercy of such cruel and rigid people who would mock a child's disability and punish him for properly advocating for himself.

I'm going to talk to the advocate and think it over this weekend but the responses I have heard from those who work with bad school situations regularly is convincing me that this one is unlikely to be worth the effort this year.

I can homeschool and thanks to those who post here I have a pretty decent idea of how to do that with my unusual child.

Going to the doctor in a bit and thinking this through further.