Single and dealing with DMD

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Comment by Donnie and Linda Owens-Jacob Owens on July 29, 2009 at 9:52am

Hi,
My name is Linda, grandmother and guardian of Jacob, 8 years old, who has DMD. I recently was divorced and am 58 years old. Don't give up on finding that someone special that you're looking for. God will provide if you ask in faith. God bless....

Comment by Adele on March 30, 2009 at 6:30pm

Jason is not on a vent nor does he have a feeding tube, but he still needs someone near at all times. He does not qualify for any NURSING care, just Personnal care attendants.

Comment by Mitch on March 30, 2009 at 4:49pm

32 hours s week isn'tbut your son must not have the needs that I have, I'm on a vent and I have a gtube so I qualify for 16 hours a day a nursing care. My mom still wants to most of my care so we're only utilizing 16 hrs per week.

Comment by Adele on March 28, 2009 at 11:15pm

Mitch. Here in Maryland, we have a few waiver programs. Jason is in one and I'm getting a little over $32,000 per year to be his primary care giver. That's for about 32 hours per week. Jason also gets 56 hours at night from his Medicaid to pay a personnel care worker do all of his night time item as he wakes up often during the night. We also have 16 hurs a week for someone to come in and do the morning stuff. So far, we have never used all of the 16 hours. The most I find that I can get someone in here is no more than 10 hours.

Comment by Mitch on March 28, 2009 at 10:50pm

The pay you would get to be your Sun's caregiver will definitely not be enough you make barely over minimum wage here in California you only get $9:50 an hour and there are no benifits. My mom is my caregiver but she also gets nursing hours so it's not so bad. In order for your sons to get nursing help they would need to be on ventilators or have a feeding tube like I have so it may not be an option for you. Good luck finding full time employment.

Comment by KarstensMom on March 28, 2009 at 1:23pm

I was having the same issues about work and decided to go into teaching. It was the best I could come up with as far as time off and schedule. Thankfully, here in Texas, if you have a degree you can take a short certification course and that's it, no extra schooling (I'm doing this right now). I've also looked into day care facilities, pre-school, but all because my boy is just 2. I'm thinking I'll follow him through school, teaching at whatever grade level he is in, what better way to be sure he is being looked after properly?

Comment by Adele on March 27, 2009 at 11:57pm

I know I got this invite a while ago, but am just getting the hang of how this all works. I've been a single parent for almost 13 yeats now, though just recently divorced from my ex. We stayed married for almost 12 years even though he didn't live with us. Even before that, I was basicly a single parent. When Jason was not even a year old, I started running a day care from my home to provide the extra income we needed. Only recently I had to close because Jason was catching the colds that the little guys brough into the house. Now, to make ends meet, I was able to get Jason into a program that pays me to be his care giver. It's not quit enough, but it's something.

Comment by Alisha Ballew on March 17, 2009 at 7:59am

I was wondering if anyone had job ideas for single parents with DMD boys. I work part-time now but it's not cutting it. Trying to rack my brain and come up with something productive from home.

Comment by Tanya Fleming on February 11, 2009 at 10:15am

I think telling people is alot better then hiding it too. And once it is out there, most people will continue to ask questions from time to time, and then move on to the norm for them and we move on to the norm for us. I am glad it all went well for you too. Johanna, mine was more like your experience most of my friends especially now that I am seperated have really disappeared even family members that I thought would always be there. I have been deleted by family member from Facebook and everything, so yes mine was not positive. I am sure it doesn't all have to do with the boys though. Some people are not positive enough to stay in our lives either, that is something we need to think about. Some people just can't handle anything that is not inside the box, or as Garth Brooks put it "Living Outside the Fire. " That is all for now, I will post another time. Thanks for reading.

Comment by Johanna on February 4, 2009 at 4:28pm

I'm so glad it went well, alot of people just don't know what to say, some start to think how they would cope and I think these thoughts stop them from acting "normal" around us. I know one thing for sure I definitely found out who my friends were when Archie was diagnosed. Once again I'm so happy your experience was a positive one.

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