College and spina bifida

[csancio99]

Hello: my name is Christina and my daughter, Cheyenne is 17 and a high school senior.....she wants to go away to college but my husband objects. anyone out there have any feedback?? Anyone in college or finished college recently and can offer any tips??

[misty]

csancio99,
Is she independent for self care? Does she normally do everything for herself? If so, I'd say let her go and have the experience. As long as she can take care of her medical needs, I don't see any reason why she shouldn't go away. Just let her go with the condition that she knows she can call home if she needs you guys for anything!

[LisaJoy]

Like Misty says, if she is independent in self-care, I say let her go! Your goal is for her to be an independent self-supporting adult, and going off to college can be a great way to help achieve this (assuming it can be done without loading her down with student loans -- I lived at home in college to avoid taking on debt).

If she currently needs a significant amount of assistance or supervision to assure compliance with bowel/bladder routines or to watch for pressure sores, use the possibility of college as a "carrot" -- if you must achieve these self-care goals to go away to college.

What exactly are your husband's objections? Are they related to the sb, or just the typical things a dad would feel about his daughter going off to college?

Welcome!

[Summer25]

If she does her care by herself, then let her go! I regret not being able to go somewhere else, but a community college. She has to be able to be independent sooner or later. Unfortunately for me, it was later. At 27, there are still things I can't do by myself.

[angel]

I have to agree here, if she can take care of herself then you just gotta let her go. She will make her way just like every other kid that goes to college will. I am sure if she needs help then she will ask for it. That is what i am teaching my son. He has SBO not that he has any problems as far as walking but just as a life lesson in general if you need help ask for it.

Angel

[n3rdchik]

Absolutely, she should go.

I would take a look at small colleges, with a flexible Student Life staff. May I make a suggestion? Check out Rochester Institute of Technology - my alma matter - they share core courses and dorms with the National Technical Institute for the Deaf. They are used to being flexible - and there are things such as note takers and support staff, and still manage to be academically rigorous. They also emphasize internships/coops - a way to get employment experience before getting out of schools.

[LisaJoy]

Many colleges have an office for disabled student services. When she's looking at colleges, she should check their websites for such an office and see what kind of support they offer.

[jellolegs23]

I went to college away from home and it was a great experience. The university I went to was only 30 minutes away from my parents so if I needed something they could come over. I lived on campus and loved it as I could meet more people and have the full college experience. It was also easier if I needed extra help on homework to live on campus and correlate your schedule with whoever was helping you. I am independent on self-care but the college I went to was used to having a large disabled population and offered many disability services on campus. The community also was able to offer personal care attendants to anyone who needed help going to the bathroom, eating, laundry, getting dressed, cleaning, etc. to the disabled college students on campus and off campus. The college wasn't specifically for people with disabilities it was for whoever wanted to go there but had a great wheelchair basketball team so it had a lot of people with disabilities interested in it. I ended up graduating with honors with my bachelors degree in Social Work. I had to work my butt off to get that far. I had a tutor for every single class to make sure I understood the homework assignments and it also kept me on track so I couldn't procrastinate on getting it done. I made weekly meetings with my tutor. I also bought a calendar and took all of my syllabi from each class and put all of my assignments, tests, projects that were to be done on the calendar so I knew what had to be done ahead of time.

I wouldn't have traded my college experience for anything! I also realize that having a higher education when you are disabled is more important than it is for the able-bodied population as we have to work twice as hard as everyone else to get a job. But just because we have to work twice as hard to get a job doesn't mean we can't achieve that goal. We can achieve just as much as anyone else if we put our minds to it.

I would start by calling the disabilities service office on campus and finding out what they offer exactly. Also, if she has learning disabilities from Hydrocephalus I would suggest getting a neuropsychological test done to assess her strengths and weaknesses in the areas of learning. This testing will provide valuable information about where her weaknesses are and how to accommodate them and also how to play up her strengths. Some colleges will also ask you to provide such testing results before they will provide disability services to your daughter. It's a lot of work but well worth it in the end!

Congratulations and good luck to your daughter!

[angel]

Ok this has nothing to do with college and SB but i thought it was to awesome not to share. My brother is in college going for physical therapy (growing up teaching me how to do things has prepaired him well) and he was worried about paying tuition. Well he just posted on facebook that he paid for his next semester with rolled up change he has been saving for years. I just thought that was so cool and just soooooo him. I don't mean to hijack the conversation but just had to share.

Angel

[technovicki]

I went away for school and took care of myself and all my medical needs just fine. I was in a city about 3 hours away from my parents. It was great as I had the full on campus college experience and realized I didn't know everything (taking turns buying toilet paper still makes me laugh as taking the basics for granted was a funny lesson at 17). Another important thing it taught me was calling doctors and making appointments once I turned 18 and used Medicaid as my primary insurance. Since I was 18 and legally an adult I had to call and make appointments as the patient and my parents were not authorized to follow-up on test results, etc. It was great, it forced me to pick up the phone and make the calls. I'm sure many learned that before or without going to college but it is something I remember and has stuck with me as being a very good thing.

[eng188]

I was NOT personally really for college when I went. Self-care was a huge issue and I didn't realize it until I started, and people were afraid to say anything because I had such an annoying independent streak. Crazy that I didn't get sicker than I did.

If I had waited for a few years and actually learned about my SB first, I'd have likely been OK.

Either way, best of luck!

[sheena]

I'm currently in college and enrolled in a nursing program right now, which is one of the best experiences ever. Although I understand your husband's worry, my dad was the same way when he found out I was going to dorm in the city. I eventually talked him into letting me dorm for a semester as a sort of trail run, and it turned out just fine. My campus is located in downtown Manhattan, and it was a challenge navigating through the hustle and bustle of the city, but somehow I managed.

Like Lisa said, its important to find out what sort of services the college offers for students with disabilities. I had a high school friend who used a wheelchair and asked to be placed in a handicapped accessible dorm, since her campus dorms/classroom locations weren't all handicap accessible. I also had to register as a student with a disability, since some hospitals/instructors weren't too comfortable working with me since I required a cane while recovering from a recent foot surgery. Although that's another story entirely. My point is, college can be the best time for your daughter to meet new people, and experience/accomplish new things. :) As long as she stays on top of taking care of all her medical needs, I think she should go for it.

[alyssandrews]

i'm 23 living with spina bifida and severe tethered cord syndrome, and a college senior (finally). though it is obvious that there are added challenges to my independent living, moving away and going to college has been the best thing that could have ever happened to me. i've learned to live and support myself, i've learned to take pride in myself, and i've learned to deal with having sb on my own terms. i've found ways to define myself outside of my disability. i really think that, though i'm sure it is scary for parents, it's the best thing for those dealing with sb, to get out there and try to be as independent as they are capable.

it hasn't always been easy, i recently got very ill and have spent a lot of the last 4 years in the hospital, but while it was unfortunate being so far away from my family, and extremely difficult to process at the time, i find that i am more confident and capable than ever, and more in control of my own body. sb is something that some of us have to live with, but it's not something that has to keep us down.

if she's independent she should go for it, and if she's not as independent as she needs to be, but shows serious desire to be independent and to go away to school, maybe you should all work together to get her ready for that change.

[corkyesu]

I went to college and it was great! My mom was the same way, didn't want me to go! She didn't think that I could do it. I went to a university that was an hour from home and lived in the dorms for a couple of years, then lived off-campus. I met some wonderful people and made friends. As long as you can manage your self-cathing issues and other medical issues, it's really not a big deal. I am sooo glad that I went to college! It really was a wonderful experience!!

[Avocado Baby]

Going to university was one of the best things I've ever done! It was difficult at times but it taught me independence and made me come out of my shell.

[vnmaria]

I think college is important for spina bifida because there are not many good paying jobs for those with serious spina bifida if they only complete high school.

[Dodger67]

People with SB are generally not very good at ditch digging so a good education is absolutely essential.

[cswimmer]

I am 25 with Spina Bifida. I graduated college 3 years with a teaching degree. I grew up learning how to be very independent, but still the idea of me going away to college was very difficult for my mom to grasp. My school was about 45 minutes away from home, so I got the freedom to do my own thing, but was close enough to home should any problems arise. It was undoubtedly the best 4 years of my life and I find myself wishing I could do it all over again. If your child wants to go, you should by all means let them. And if it turns out it's not the right fit, they don't have to continue.

[mcco5543]

I went an hour away and lived on campus. I was totally independent with self care, knew how to handle money, had great self advocacy skills and always knnew i had my parents to fall back on if i needed help. The office of disability services (which every college in the usa should/must have) are wonderful and can provide many many accommodations .....That should be your child's first stop at any college they visit. If you dont' let your child at least try (if of course htey can care for themselves medically and do all their activities of daily living independntly of course) then your husband will be telling your child that he doesn't think she can do it/make it.....that won't do well for self esteem or later indpeendence. I absoulutly loved college....every minute of it. If she can handle it well enough to at least give it a shot I think everyone should..disability or not.

[sean]

I'm 53 yrs and in my first year of a Bachelor of Social Science. Even though I live close to the University I'm studying externally, it is working very well. Uni's here tend to be built up in the hills, particularly new Uni's, with disability access looking like an after thought!!!!!. I can walk around but not up and down, simple as that.

I'm working on core subjects, two units per semester, doing quite well, one pass otherwise C's and D's. Every assignment a challenge, a little harder each assignment, quietly sick with anxiety (good anxiety) and LOVING IT!!!!
My plans, basically, go no further than completing core units at the moment.
Can't quite believe it, I'm doing it.


ps. I feel I can mention to you guys, I do aim/intent devoting a chunk of my studies to adult life with SB. I will see where my majors take me, I feel sure to write and will likely lean toward counselling in some area, sssshhhhh..........core subjects!!!!!

[Lifeisgood]

I went to college about 2.5 hours from where I grew up and enjoyed every minute of it. I did have some (minor) complications my freshman year and the docs here thought I had retethered, but the school health center helped me to get the help and referrals I needed. In the end, I felt better and did not need surgery. I have no regrets whatsoever about my college experience.

[Williefayj]

I was reading through this forum and I have to say that even though my son is still young, it's encouraging to hear that those that can be independent have gone to college and been successful. I will say that although we have years ahead of us to plan for college, it is something I have worried about from time to time. However, now that I see that people who can do their own medical things for themselves have been able to make, that is one thing that maybe I won't have to stress for a while! :)

[mhaase915]

Hi,

My daughter is 19 with SB, LD, and wishes to go off to college. We believe that this is a wonderful way for her to gain independence in a fairly safe setting. We looked at many universities, and have found that University of Arizona was the best fit for her. It has an LD support program, and a wonderful wheelchair athletics program for her. Even if she doesn't play competitively, the university understands the needs because of a large contingency of people with physical disabilities and has done a great job. She is going to work on some skills in junior college to be sure she is ready for the academic rigors, and hopes to U of A the following year. We are truly excited for her and this chapter in her life!

I believe if you give them the basic skills, assist them with resources where they are, and always leave the phone on, they can take the leap successfully!

[Dodger67]

Arizona's swimming team is legendary. Some of South Africa's top Paralympic and Olympic swimmers trained there.

[Flyerbif25]

Hi! I am currently a freshmen in college and overall it has been a GREAT experience. It has definitely come with its own issues, but it is definitely worth it. My biggest advice would be to get in contact with the disabled student services at the school your daughter intends on going to and see how willing they are to help. That can make or break a college experience. In my experience, they have been very responsive as long as I initiate the accommodations I require! Also getting involved on campus and a having some close friends to depend on can make a big difference. Best of luck!

[Lifeisgood]

Welcome Flyerbif!

[mg357]

I went to a 2 year college and i had a pretty good experience some of the teachers were not very understanding about me having spina bifida but overall it was a pretty good experience.

[Katz4U]

I am 49 and have SB and hydrocelphalus. I was not shunted. I did go to college right after high school to take secretarial courses, then in the mid 90's completed an accounting diploma. I enjoyed the experience a lot, but wish I had known I was dealing with a learning disorder - it would have made the experience less stressful. I was diagnosed with Non-verbal Learning Disorder at the age of 40, and it explained the reason for a lot of the struggles I had with exams and some courses. I would highly recommend an neuropsych assessment before going to post secondary education - it will enable you to get accommodations for things like exams and note taking, if necessary. Parents please ask questions about such things if your child is going into post secondary learning.