From High School to College?

Bean's 9th Grade Art Project

If navigating the smaller scale of a middle school was too much and conquering a high school proved to be an obstacle, how on earth will a person with EDS manage college?
That is the question we are facing, now. This is the time in the high school process that kids begin thinking about college, planning for tests, thinking about narrowing down a future.
While this is not easy for any teen, I suspect the difficulty multiplies with Ehlers Danlos Syndrome forcing itself into the mix. As a parent, some things that I am focusing on are to encourage my little zebra to seek her interests and to look toward a future. That is the key takeaway. Even when facing these obstacles, the future will hold joy and it is worth pursuit.
The second thing I think about is a school that is near home. It is unrealistic to think that Bean will be fine in a dorm without help that is very near by. So, close to home. We are lucky in Chicago area as there are many great schools right here. Great.
Third, size of campus and accessibility are very important. There will be times when a wheelchair will be needed and in winter in Chicago, not all campuses will be manageable. Some will come out as clear winners for their thoughtfulness when it comes to accessibility.
We will be talking with the school support about this process and attending college fair for disabilities. In addition, we'll get to a point where we narrow down the options and when we do, I will come back and share. I would love to hear from you to know what has been helpful in this process!

Crash and Walk Again

So, there wasn't a literal crash. It was just a decline that became desperate starting in January after climbing on a water obstacle course. Bean didn't get better after that adventure. She got worse and worse until she was homebound and in a wheel chair for almost all walking. She was down to an average of 150 steps a day with her hips subluxating with nearly every attempt.
While things looked dire, we tried the inensive rehab therapy in downtown Chicago through the RIC pain clinic. We went into it thinking they would help us define the correct support devices for Bean and help her to begin walking again, but this program was not geared for the type of EDS issues that Bean was dealing with. It is a pain clinic geared toward people with chronic pain and the fit was not perfect. There were problem areas where therapists in PT or OT would tell her to ignore burning nerve pain and to push through dislocating shoulders and end of limit pain. While this may work for some situations, it created quite a bit of discord for this situation.
So, after giving that program a good effort and 6 weeks, we stopped and Bean saw her specialist, Dr. Tinkle. Dr. Tinkle knows more about this than anyone we've ever encountered and he was wonderful with Bean. He told her what she needed to hear, educated her, and listened to her, too. I believe that the combination of meeting with him and stopping the RIC program gave her a new energy. She wanted to try walking again. She was asking me to take her out and walk. I was shocked. After months of her giving up, she wanted to fight!
Initially, 100 steps was enough, but it quickly went to 400, then 800 and one day last week she made it to a collective 3000 steps over the course of a day. Our current goal is to get her walking in school without a wheel chair this fall. She will likely still need the chair for flare ups and for longer walking or standing situations, but this progress is amazing and we are renewed and hopeful, again.
She is still not able to do stairs very well. This causes a great deal of pain in her hips, and subluxations. With that comes a fear of falling, as she has lost her hip control on stairs too many times in the past. To help this stiuation, we have moved her living space from the top floor to the ground floor for the past 5 months, and the whole family is now relocating to a house where all the living space is on the main ground floor. This will help keep Bean included in all family activities.
So, we have a post that is positive. It's hopeful. It's heading a direction of ability in a world of decline. I am proud of my girl for each and every step and I hope to come back with more postings that build on this strength and hope.