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 March2002. Both of my sons, ages 13 and17 have it also – they’ve both been sick for seven years. I spoke at the May CFSAC meeting withmy family about the need for attention and research on pediatric ME/CFS. Today I would like to focus on theeducational challenges for children and teens struggling with this illness.
Both of our sons have managed to keep up with theirclassmates in school throughout their illnesses, but my husband and I foughtmany battles with school administrators and teachers to afford them thisright. Our sons are both verybright and are good students, and that has helped as well. We have often asked ourselves, “Whathappens to kids that struggled with school before they got sick? Or kids whose parents aren’t as able tofight for them or who aren’t as well-informed?” The answer is that those kids, as well as kids who are tooseverely ill to go to school, are getting left behind.
Through much of the past 7 years, our sons have been able toattend school at least part-time, thanks to treatment for OrthostaticIntolerance. In working to getthem the accommodations they needed at school, we encountered many barriersalong the way, most of them due to a lack of knowledge about ME/CFS. One school nurse actually called ourpediatrician and yelled at her for 45 minutes, saying she didn’t believe thedoctor’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 withour son, saying that if he was sick, he needed to be on 100% homeboundinstruction, despite the fact that he was sometimes well enough to attendschool. When we had the backing ofa supportive principal, those teachers were forced to comply with hisaccommodations, but in some cases, we just had to work around those teachers.
Our son’s 5th grade teacher interpreted his newlysevere cognitive dysfunction as behavioral problems, telling us that ournormally obedient, straight-A student was “a defiant, cheating, disobedientchild.” In all cases, wepersevered, gaining support wherever we could, from principals and guidance counselorsand in some cases, calling district-level or state-level administrators. We educated ourselves on the law andwhat our sons’ rights were. All ofthis, and especially the hours-long, often combative meetings, frequentlyresulted in a relapse of my own symptoms.
We’ve actually been lucky. Our stories are nothing compared to what we’ve heard fromother parents. Some kids withME/CFS have outright been denied an education, even by district and statelevels. We know of many caseswhere parents have had to hire their own tutors and/or lawyers. In the worst cases, parents trying toensure an education for their very ill children have themselves been vilified,with school administrators calling Social Services with threats of removing thechildren from their homes.
With all of the challenges that these poor kids face in justgetting through each day with the disabling symptoms of ME/CFS, it is appallingthat they also have to fight for their right to an education. Many of these battles could be preventedif school nurses, teachers, and administrators were properly educated aboutME/CFS.
In March 2001, Dr. David Bell wrote an excellent article onCFS for a publication called School Nurse News that was then sent out to school nurses around the country by theCFIDS Association, sometimes accompanied by Dr. Bell’s appearance at regionalmeetings for school nurses. Thatwas 10 years ago and very little has occurred since then to inform educatorsand support personnel about the challenges of pediatric ME/CFS.
As I mentioned in my May testimony, we desperately needresearch into pediatric ME/CFS, including a full-blown population study toestimate the number of kids and teens suffering with this illness. In addition, we need strong efforts toeducate school personnel and the public about the severity of ME/CFS, itsincidence in children and teens, and what kinds of support are needed to getthese kids the education they each deserve.
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