Wednesday, November 09, 2011

My CFSAC Testimony: Educational Support

It's been a very busy week here, with Jamie back on the couch and my husband out of town, but I thought I'd just take a moment to share my CFSAC testimony with you.

The CFS Advisory Committee to the Department of Health and Human Services (U.S.) met yesterday and today.  I had requested a speaking slot, after speaking for the first time at the May meeting about the plight of kids and teens with ME/CFS.  I was hoping to go in person but figured I could call in my testimony if I wasn't able to travel to DC.  Unfortunately, I didn't get a speaking slot this time - they had too many people requesting time (which is a good problem to have - our invisible community is becoming more visible!).  Then, we found out last week that my husband had to go out of town, so my going to DC became impossible anyway.

But I did turn in my testimony, and I think it will be included in the written copies handed out to CFSAC members.  Our local parent group had agreed to focus our testimonies this time on the difficulty of getting appropriate educational support for kids and teens with ME/CFS.  I have been working on a more detailed post about 504 plans and IEPs and hope to post that later this week.  In the meantime, here is my (unheard) testimony:

My name is Sue Jackson, and I have had ME/CFS since March 2002.  Both of my sons, ages 13 and 17 have it also – they’ve both been sick for seven years.  I spoke at the May CFSAC meeting with my family about the need for attention and research on pediatric ME/CFS.  Today I would like to focus on the educational challenges for children and teens struggling with this illness.

Both of our sons have managed to keep up with their classmates in school throughout their illnesses, but my husband and I fought many battles with school administrators and teachers to afford them this right.  Our sons are both very bright and are good students, and that has helped as well.  We have often asked ourselves, “What happens to kids that struggled with school before they got sick?  Or kids whose parents aren’t as able to fight for them or who aren’t as well-informed?”  The answer is that those kids, as well as kids who are too severely ill to go to school, are getting left behind.

Through much of the past 7 years, our sons have been able to attend school at least part-time, thanks to treatment for Orthostatic Intolerance.  In working to get them the accommodations they needed at school, we encountered many barriers along the way, most of them due to a lack of knowledge about ME/CFS.  One school nurse actually called our pediatrician and yelled at her for 45 minutes, saying she didn’t believe the doctor’s diagnosis of CFS because “he seems fine when he’s in school,” obviously unaware that  many kids (and adults) experience good days and bad days with ME/CFS.

We have run into teachers that simply refused to work with our son, saying that if he was sick, he needed to be on 100% homebound instruction, despite the fact that he was sometimes well enough to attend school.  When we had the backing of a supportive principal, those teachers were forced to comply with his accommodations, but in some cases, we just had to work around those teachers.

Our son’s 5th grade teacher interpreted his newly severe cognitive dysfunction as behavioral problems, telling us that our normally obedient, straight-A student was “a defiant, cheating, disobedient child.”  In all cases, we persevered, gaining support wherever we could, from principals and guidance counselors and in some cases, calling district-level or state-level administrators.  We educated ourselves on the law and what our sons’ rights were.  All of this, and especially the hours-long, often combative meetings, frequently resulted in a relapse of my own symptoms.

We’ve actually been lucky.  Our stories are nothing compared to what we’ve heard from other parents.  Some kids with ME/CFS have outright been denied an education, even by district and state levels.  We know of many cases where parents have had to hire their own tutors and/or lawyers.  In the worst cases, parents trying to ensure an education for their very ill children have themselves been vilified, with school administrators calling Social Services with threats of removing the children from their homes.

With all of the challenges that these poor kids face in just getting through each day with the disabling symptoms of ME/CFS, it is appalling that they also have to fight for their right to an education.  Many of these battles could be prevented if school nurses, teachers, and administrators were properly educated about ME/CFS.

In March 2001, Dr. David Bell wrote an excellent article on CFS for a publication called School Nurse News that was then sent out to school nurses around the country by the CFIDS Association, sometimes accompanied by Dr. Bell’s appearance at regional meetings for school nurses.  That was 10 years ago and very little has occurred since then to inform educators and support personnel about the challenges of pediatric ME/CFS.

As I mentioned in my May testimony, we desperately need research into pediatric ME/CFS, including a full-blown population study to estimate the number of kids and teens suffering with this illness.  In addition, we need strong efforts to educate school personnel and the public about the severity of ME/CFS, its incidence in children and teens, and what kinds of support are needed to get these kids the education they each deserve.


Anonymous said...

Great testimony Sue!


Karen said...

Great testimony Sue!

Baffled said...

Nice job!

Annie said...

The Grade 5 teacher said WHAT???!!! Jeez that must have been a great day. Good idea to skew your testimony towards this topic, shame you didn't get to present. Fingers & toes crossed as always...

Sue Jackson said...

Yeah, Annie, that was horrible - we were so shocked. At first, we were sure, she had us mixed up with some other kids' parents. If you knew Jamie, you would know that all of those accusations were way, way off-base, just ludicrous, the complete opposite of the way he is. As it turned out, we figured out his cognitive dysfunction had suddenly become so severe that he couldn't remember what the teacher said a few minutes later, so he would ask a classmate or look at someone else's paper or simply not be able to do what she'd asked. She was awful!! Fortunately, he had a fabulous principal who'd known Jamie since kindergarten and was behind him 100%. She said, "I know nothing about this illness or 504 plans, but we will figure this out together." And when the teacher dragged her feet on the accommodations, the principal stood firm and said, "You WILL do this."

There are good ones and bad ones out there!! Unfortunately, it's all about lining up the right people to support you.


Toni said...

Excellent, Sue. Thank you from all of us! I wish you could have spoken in person about that fifth grade teacher. This is a powerful statement. I'm sure it will get read.

Annie said...

The question I ask is how do these people end up in teaching (where there are so many great people too thankfully) when they are so clearly not in tune with children? It just breaks my heart. Anyhow, sooo glad you had a decent principal and, of course, he had parents who were going to puzzle it all out. Bravo.

Anonymous said...

thanks for writing and fighting on our behalf. you are an inspiration to us all, thank you. - Iggy

Diane J Standiford said...

I had no idea. Thank you and keep up this fight.