Cheryl,Well, you are very lucky to have such parents to support you as they do, many aren't so lucky! I say if you have a great relationship with your parents and your extended family.....I cheer you on to go for it!!! If they are offering to help you and your son thru the Duchhenne Journey then you are one of the blessed ones.
Me I have my parents right here in town, my son can get to their house in his chair ( so, they aren't far ). I am Adam's ( he is 23 yrs. old now ) 24/7 caregiver and get disrupted sleep every night due to having to reposition him ( he hollers for me ), sometimes it is every hr. on the hr. sometimes it can be up to 2 1/2 hrs. before he hollers then maybe the next time a hr.. I just need a good nights sleep ( have been doing this since 2002 )........my parents know this, have gone to counselors because I have burnout from no sleep.....and do you think they would offer to come over and take a shift once in awhile so I can get some sleep....the answer is no.....I recently remarried May 10, 2008.....couldn't go on a honeymoon had no one to care for my son.....I don't get respite care, I don't get many breaks, it will get harder down the road, so, don't throw good loving help and support out the door....believe me you will need them throughtout the whole Duchenne Journey.....not many have what you have, go ahead and embrace it!!!!
Oh my gosh - your barn is beautiful. Can we all just come and live with you guys?
Can I ask who all you have living there? Looks like there are children there as well? Do you find that you ever want to scream at each other? How old are your sons?
Thanks so much for the information,
He has been getting SSI since he was in elementary school, every state is different on some things, he qualified for respite care before he was 18, it was hard trying to find someone to come and do it, have been down all the roads re; what he can get and what he can't get, the biggest problem here in our area is finding someone to do respite care in your home.....it's not the matter of getting the services it's finding the people who want to do it......this is a big problem not only for my family but for many others here, I do get paid to be his PCA, after he turned 18 he was able thru Attendant Services with Alpha One to hire anyone he wanted to come into our home and care for him thru a Waiver Program for people with disabilities to be able to stay in their own home and not go into a nursing home, even though he is 24/7 care he is only alloted 50 hrs. a week for paid caregiving services. There are some other state programs here in Maine, besides the program he gualified for......I have heard of so many stories from other disabled thru knowing them myself, reading things in Quest magazines......not so realiable PCA'sCNA's not showing up at the person's home, and one friend while she was a work the CNA for her daughter walked out of their home and left the daughter by herself and didn't call the mom to tell her she was quitting working for them, now if you move down state here in Maine towards the bigger cities there are more services available and more eager people willing to apply for these jobs......there are differences too between adult services and children services and like I mentioned these differ between states. Thank you for your concern and suggestions,