now what?

iVillage Member
Registered: 03-26-2003
now what?
9
Tue, 08-17-2004 - 8:11am
My dd has muscular dystrophy, I haven't posted here in awhile, and is in her second year of high school. So, she is thinking about college. How does that happen? I don't see it being a real option. she would need an aide with her for personal help, dressing, bathroom, carrying books, etc. I can't afford to send her to college and supply an aide and assistive equipment. We will not qualify for financial aide (unfortunately we are middle class-towards the lower end) and I can't spend all my money on one kid when it is a long shot gamble. I have two other younger, typical children who would like to go to college. Not to mention, if she goes to college and graduates who is going to hire her? The work place has to make "reasonable" accomodations, not what she would need. So we spend all this energy fighting with the school district for all these years to get her a good education for what? So she can flip burgers, oh yeah, she isn't physically capable of doing that either. I see her future as bleak, and mine. I really never wanted to be wiping the rear of an adult, or dressing her. I feel like I will be old and febble and still doing for her. What type of a quality life is she having? Is any of us having? I guess she has ssi and living at home to look forward to. What am I supposed to tell her. Did I mention she also has emotional problems, she is very angry about her situation, and suffers from ocd and anxiety.

I am very angry right now too, this is not fair. I don't know what to do. I don't want her to live the life I envision and I don't want to live it either. I thought we, dh and I, would retire, travel, visit the grandkids not live with a disabled child and use all our resources for that. If I could have seen the future years ago, I would not have done it.

Sorry to be so negative, but right now I don't see an out.

If anyone has been through the college years and beyond and has some encouragement....
iVillage Member
Registered: 03-19-2003
In reply to: jacmom60
Tue, 08-17-2004 - 10:39am

((((HUGS)))) to both of you.

 


 



Avatar for kelspur
iVillage Member
Registered: 03-27-2003
In reply to: jacmom60
Tue, 08-17-2004 - 3:06pm
Hugs to you! You sound so frustrated. I'm sorry you're feeling down!

My disabled child is only 22 months but my best friend in college had a disability and she got help through vocational rehabilitation. Check out link: http://www.parac.org/svrp.html . Look for your state and see what they can do to help. My friend's bachelor's degree was free!

Hope that helps! And keep dreaming! You never know. The future is probably brighter than it looks today.

Kelsee

iVillage Member
Registered: 03-26-2003
In reply to: jacmom60
Thu, 08-19-2004 - 11:59am
I couldn't send an e mail through the profile, I'm a bit computer phobic.

We live in North/central Jersey. I have looked at scholarships and such but there seems to be very little for the physically disabled. She does very well in school and is listed in who's who of American HS students. THat is why it would such a shame if she cannot go to college. Any help would be appreciated.
iVillage Member
Registered: 03-19-2003
In reply to: jacmom60
Fri, 08-20-2004 - 8:01am

Not a problem...we'll start doing some searching.

 


 



iVillage Member
Registered: 03-19-2003
In reply to: jacmom60
Fri, 08-20-2004 - 11:46am

Here are a few links I got with a couple of web searches.

 


 



iVillage Member
Registered: 01-08-2004
In reply to: jacmom60
Wed, 08-25-2004 - 11:43pm
(((HUGS)))) My dd's are 2 and turning 7 next week, so I haven't experienced the college years. It doesn't bother me at all that you're upset and negative right now. IMHO, I probably would be too. Is it possible for her to live in a group home or some other type of semi independent living? I'm not sure how much this would cost you and dh, but it's definitely worth checking into. As far as college, I know some community/technical colleges offer programs for the disabled. Programs last anywhere from one semester to 2 years, and they focus on independent living, job placement and retention. This could be a viable compromise, she gets to go to college with minimal expense on you and dh. Does she get SSDI? Woudln't that enable her to get some financial help in the future? I hope you find the solutions you're looking for and I'm sending P&PT your way. Good luck!

iVillage Member
Registered: 03-19-2003
In reply to: jacmom60
Tue, 09-07-2004 - 8:05am
How are things going?

 


 



iVillage Member
Registered: 11-08-2003
In reply to: jacmom60
Sun, 09-12-2004 - 10:55am

Lurker popping in here......


What about woking through local Easter Seals program to assist with assited living program or to find a supported employment program? Just an idea...... The center I'm at (in wisconsin) has adults of all abilities doing supported emplyoment projects in the community and within our highly supervised center.

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iVillage Member
Registered: 03-19-2003
In reply to: jacmom60
Mon, 09-13-2004 - 7:58am

Jenell, thanks for dropping in.