Time Sensitive Action for Children with Headache Disorders

[MichelleC]

Millions of American children and teens experience disabling forms of migraine and severe headache disorders. We need to ensure they have access to the special education services they qualify for. We are so grateful to Representative Cori Bush for being a leader and champion for children living with headache disorders.

Take action with this form letter: https://qrco.de/idealetter

Please call your Rep's office, it's quicker & and even more effective. A phone script & more is included in the link below. They need to sign by Friday. *Edit - Deadline was extended to Monday!

Action Toolkit: https://conta.cc/46X9JxJ

Thank you for lending us your voice with this critical need.

#HOH2023
 

Edited July 21, 2023 by MichelleC
new information, deadline extended

[jon019]

Hello.

...my mother was a Special Ed teacher, it is a subject dear to my heart...not the least of it being the times i saw her come home in tears...sometimes joy but usually frustration. no need to bore with details, but it is an underfunded, understaffed, underappreciated, under most everything but the front line folks who give their heart and life and mostly LOVE to the effort...

....i say this not in disagreement with this initiative at all, but to CAUTION to be VERY careful what is proposed/enacted.  these kids absolutely need a type of care and instruction beyond what most "regular" classrooms can provide. i wonder if the experience of Covid has advised school districts on the needs of kids outside the "norm". i doubt it...but i don't know. what i do know is that regulating that these kids be classified as "special needs" w/o careful wording, will, in many cases, result in some districts dumping them into classes with developmentally disabled kids far below age normal. kids requiring one on one, sometimes very basic instruction, and frequently repeatedly. 

...most anyone in the headache community realizes that it is not a cognitive issue we are dealing with, and placing these kids in the environment i describe will leave them with insufficient attention and instruction based on what is practical and possible. CAREFUL  please......

best

jon

[MichelleC]

Jon you raise some very good points. Support truly needs to be individualized, and families need to be listened to. There is often a struggle when trying to get accommodations for students in order to help their child succeed. The problem is that many schools are denying students any assistance at all, despite the fact that they qualify under the IDEA Act already based on their condition. The only wording to be added is to clarify that headache disorders are included for the schools/districts that are confused or using that as an excuse to disregard these students needs. By including headache disorders explicitly, it allows a clearer path if they continue to be denied for any reason. If students are not getting the type of care and instruction they need, families will have better grounds to fight for it.

Ideally every child who needs it deserves to get an Individualized Education Plan based on their needs, and it will be executed properly. I'm 47 but grew up in the special education system with severe daily chronic migraine. My mother advocated for me, even in a "good" school district there were problems getting services. Now I am a mother who has a teen with chronic migraine, in schools that are not as good and are understaffed since the pandemic. I can't fathom what it's like for those with lesser known headache conditions. Working with Clusterbusters and other headache orgs has been an eye opening experience.

The language is solid, the real challenge begins once those rights are cleared up with those who are reluctant to provide services. Hopefully the future will lead us to a place where teachers are paid more and we can have a more solid bank of special education teachers that are not too burned out from being over worked. We have much work to do. 

Thanks for sharing your thoughts. Keep in mind I am not part of the AHDA beyond being an HOH advocate and partner sharing for CB above as well. In this reply I am sharing my own understanding from working with HOH materials, plus my own thoughts in return.

~Michelle

[spiny]

I was going to mention an IEP for these kids. If they present the school with a note from the doctor describing their specific needs, the school is obligated to supply them. I do know from personal experience, they will ignore the IEPś that are a pain for them. My youngest was gifted in reading and read at a 5th grade level in kindergarten. In first grade, they were to send her to her easel in the back of the room to work on her art skills. Nope. Teacher claimed it was disruptive. So, she was sent to read and TEACH the 5th graders how to read! That started her school career off very badly. Her classmates did not understand and treated her badly over it for the rest of grade school.

My son was gifted verbally and suffered in math. They followed his IEP to the letter because he could charm you just by talking about something he was interested in for ten minutes, 

In addition, the schools gave him all the ´best' teachers, so she was not allowed to have them as teachers! She got whoever was further down on the capability list. 

 

Bottom line is that I agree with the purpose of the statement, but I don't have a lot of hope for it. I too would push for the adoption of this idea. I wonder if offering a kind ear to those parents and telling them to get a note and force the school to do an IEP for the child would produce better results? I think that it might. But getting the word out first could smooth that part along for many.