I have significant disability, and so I can identify with disability groups and love the support that I get there, but I don't feel at all like people who have spinal cord injuries -- they have mobility problems, but otherwise they aren't ill the way people with multiple sclerosis are. They are strong advocates for access and wheelchair issues, but I'm not sure they relate to bone-crushing fatigue, EDSS progression, invisible symptoms, how bizarre it is to be functioning at such different levels on various days, etc.
Anyway, my point in this post was to bring up an idea that was given to me. I have a group that works with me sometimes to help me with my cognitive problems. I mentioned that at schools, if a *child* has a disability or illness then you can get an IEP or extra help, but since it's *me* that needs the help (and I am a single parent), my children often miss out because I mess up paperwork, can't get to events, don't have energy to volunteer, participate in social stuff, etc., etc., etc. You know what I mean!
So these people came up with a brilliant solution which we will try this year -- going to the school administration with a representative from the MS Society to explain MS and its visible and invisible symptoms, and then asking them to assign us a "buddy family."
This would be a family that the school knows is reliable and compatible and would check in with me regularly to say, for instance, "Did you know that there are school photos on Tuesday?" or "Do you need a ride for your son to go to the game on Friday?" or just to keep in touch to make sure I was aware of stuff and hanging in there.
And my very sensitive teenager who is at an age when she is embarrassed by "special" help and attention would never even need to know about this -- it would be arranged between the adults and the students never need to be involved.
I am so eager to try this! And I am passing on the idea to you guys.