I am currently a junior in high school with DMD and I am working an independent study in school in which I hope to create a handbook of sorts for wheelchair users in high school who are planning to attend college in the near future. The purpose of the book is to provide information about what to expect when these students arrive at college as well as to alleviate any concerns or anxieties that the students may currently have. In order to create this book, I need to interview wheelchair users in college or out of college who will be able to provide first hand input on the topic of the book. Thus, I was hoping that through the PPMD forum, I would be able to find individuals with Duchenne that are willing to speak to me about their college transition and experience. Topics I will be focusing on include the college planning process(why did you choose the college, what factors),college accommodations and college campus accessibility, use of technology, academics, college social life and post college plans. I will then compile this information into the handbook I spoke about. Once I find participants, I will speak to them either by phone, Skype, email or  in person if possible. If anyone is interested in participating please comment on the post. I would truly appreciate participants because the book will help wheelchair users across the country who are making the next step in life in entering college.

 

Tayjus

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This is such a good idea. My son is a freshman and this information will be very useful when he is getting ready for college. Good luck!

Curious if the handbook has been finished or if there is anything out there to help as our boys reach this time.

Look on Facebook. There's a duchenne and college group on there.
http://disabilityhorizons.com/2013/08/the-transition-from-independe...

Tayjus worked hard, putting information and interviews into a publication. The link is above. It contains useful, practical information, as well as links to other resources.

I have been collecting information as well, and hope to get it online soon. Please let me know if you have specific questions.
Kathi

I have friends who can hook up with you on this or even can communicate through skype/emails. Let me know if you are still interested, this thread was last year and would like to know if you still need them.

My son is in his first semester at college. I have the luxury of being able to work anywhere there is an Internet connection so I have become his PSW. The services that are available to us for getting him to school and while he is at school for things like feeding, toileting or getting into the locker are pretty well useless. Kyle is convinced that if I was not there, he would not be going to Humber or any other college. Residence is also a joke. They would allow us to move his 600 pound bed into residence but would not allow any PSW to stay with him.

My Skype is JumptoSupport, his is Kyle.Luchetti feel free to connect with us.

Hi Fred,

Hank is looking to go to college next fall, I heard that Humber was supposed to have one of the best services available to disabled students, but but the looks of your post that isn't the case. Have you got any suggestions, because having myself with him everyday is not an option. What type of services would you be able to access? also what is Kyle taking?

Okay to answer these in no particular order. Kyle is taking Sustainable Energy and Building Technologies. This is a perfect topic for him because he has been studying it on his own for over two years.

The people at Humber are awesome. They have a Disabilities Services Department the likes I have never seen. That being said, here is where the process falls down for us:

1) There is no direct bus from our home to Humber. Kyle would have to take 3 buses for a total of 2 hours of transit. This means that to hit an 8AM class he would have to leave between 5:30 AM and 6:00 AM. I drive him to school every day and the best time we have made it door to door is 35 minutes. I have had several tense conversations with YRT who I have told that when they do offer a service that is door to door, they should call me. Currently this part of Kyle's college costs us over $60 per week in gas alone. The travel allowance from ODSP is $60 per month.

2) Bathroom access. Currently there are only about 3 washrooms on the campus that Kyle can go comfortably. Only 1 if he has to be lifted onto the toilet. There are handicapped stalls in almost every washroom but try to get a chair in there and navigate a turn around. It is not that easy. Some of the handicapped washrooms do not have actuated doors. So Kyle could get in, but not out unless there was someone there to hold the door. Red Cross has offered to have a staffer come in on a schedule for Kyle's bathroom access. I do not know about you but I cannot schedule my own bathroom breaks so I do not know how they expect someone like Kyle to do it. So Kyle needs a bathroom attendant on call. There have been times that we needed to get to a washroom in an emergency. If I was not there, Kyle would have soiled himself and that would not have been good for anyone. These special use washrooms are also used by all the able bodied people who have no clue how to operate them. This has cause breakdown of the door mechanism which required a week to fix. Also they seem to have no clue that these washrooms are intended for families with small children and disabled people. Both are very sensitive about cleanliness and I have had to clean urine, blood, pubic hair and goo that I have no idea what it was from the area. One time the lady who used the bathroom before sprayed so much perfume in the air that I had trouble breathing. Kyle, who has just over 800 cc of lung capacity nearly passed out.

3) Pool Access. They have a wonderful pool at Humber that is largely underused. They have a ramp to get in it and they even have transfer chairs. They do not have a lift of any kind though. I offered to put one of my 3 Hoyer lifts there. Their response was that I would need to supply insurance coverage and rent the storage space. Needless to say I was not impressed.

4) Residence. We have looked into a residence situation for Kyle. Kyle needs 24/7 attendant care. So, I could have 24 hour access but I could not sleep there. So if Kyle had to go pee in the middle of the night, I would have to drive there to assist him. We are currently still talking about this.

5) Lockers. I dare anyone with Muscular Dystrophy to access a locker anywhere on campus. An attendant is needed for locker access.

6) Class Set Up. When Kyle gets into every single one of his classes, I have to remove chairs and move tables so that he can get it. In some classes this is quite a chore. When situated, he needs pencil case, iPad and paper pulled out of his bag and placed in front of him so he can get to it. An attendant is needed for this too.

7) Lunch. If he brings something from home there is no microwave that he can get to. The tables are so close together that a wheelchair could never fit. He needs to find a spot at the end of kick someone out of their seat. The other students are pretty good about moving. Still, this requires an attendant.

The bottom line is that I am very fortunate that my work can be done from a laptop anywhere. I do not need to punch a clock. If I did, Kyle would not be attending classes because a full time PSW is something that we could not afford. If you are thinking of college Humber is a great place. Just be ready to support your son in the program that he chooses because the kind of support that a Muscular Dystrophy child needs at any college just does not exist. If you like and since I am there already I would be more than happy to also PSW for your boy.

That is very generous of you to offer, but we haven't decided where Hank will go to school yet. We are trying to figure things out first. We will also be attending a seminar given at Bloorview and see what suggestions they have as well.

Well I can definitely recommend Humber. The program Kyle is taking is wonderful. What course of study does Hank wish to undertake?

Hank is looking into the computer gaming and animation programs, as of right now



Fred Luchetti said:

Well I can definitely recommend Humber. The program Kyle is taking is wonderful. What course of study does Hank wish to undertake?

Hi Cathy,

Humber does not offer an animation program. Seneca is the place for that. I would counsel Hank to first learn to animate. As one of my old managers uses to say: "It's easier to teach an animator how to do 3D than it is a 3D artist how to animate."

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