February 22, 2013 at 11:20 am #74719Next Transition!
Hello, we have just reached another transition and really need some advice! My son James has DMD. He is now 16 going on 17 and is about to take his final exams and will be starting 6 form in September. James is now using a powerwheelchair, though he can still walk with aid. James is very inteligent lad and has begun to mature into a fantastic young man who knows his own mind and now craves indepdendence.
In the past when he was younger and at school I have worked part time to be able to drop him off and pick him up from school. In the school hols I have been really lucky in that my parents have been on hand to take care of James at their own home. Since James has starting using his powerchair he can no longer access their home, therefore in hols my parents have been coming here to look after James. The change we are now facing is that James wants to spend time with his friends in the holidays and really doesn’t want to be “baby sat” by his grandparents! Also my parents arn’t getting any younger and I feel I’am now asking too much of them.
Where do we go from here? Is it possible to remain a working mum and get assistance for James to become independent (not leaving home, buy the way!!!) but to be able to have support at home when I am not there and also when he is out and about.
I always assumed that one day I would have to give up work, however financially I’m not really in a position to give up my salary. I feel really torn and also feel guilty sometimes that I have this conflict of being there for my son and also providing for the family and continuing to work!! Help!!marysmithParticipantPosts: 7Joined: 11/01/2012February 22, 2013 at 12:35 pm #87871Re: Next Transition!
I and many others here can fully appreciate you wanting to be there to care and can equally understand James’s need not to feel baby sat and be about with his mates. The ideal ideal would be a sort of big-brother figure, someone James felt comfortable with helping him and you feel comfortable with being the trusted care giver.
Are you in contact with the Regiona Care Advisor for your area? You can find the contact details for them HERE They will be able to help you thruogh the mine field of finding and funding a carer. Their specialist knowledge of MD as well as what services, organisations etc are available in your area are invaluable.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015February 23, 2013 at 11:00 am #87870Re: Next Transition!
Many thanks for replying and understanding! I’m not sure who my Regional Advisor is, but I’ll check it out. Thanks again for being understanding, as just looking into this is really strange and a bit scary.marysmithParticipantPosts: 7Joined: 11/01/2012April 12, 2013 at 6:57 pm #87872Re: Next Transition!
my big transitional landmark at 16 /17 was learning to drive. it meant I could meet up with friends in accessible places without family escorts. their is driving assessment centres across the country that specialise in accessing driving suitability and what aids he would need to make driving possible.
I went to Astley Ainslie Hospital in Edinburgh. I think their is a link on the Motability web site.
"""""""What doesn't kill you makes you stronger""""""Cat (Mod)ModeratorPosts: 1,002Joined: 20/09/2010
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