Special Needs Parenting

[Mandy Rayner]

My son will be 22 next year he has 2 deletions from chromosome 5 & 2 deletions from chromosome 8, he has minor facial abnormalities, is severely mentally & physically disabled, has complex partial epileptic seizures & myoclonic jerks, sleep apnea & other medical problems. he is in most aspects like a large 2 year old, likes to play with toys & rattles loves music, water, going out even if its just shopping etc etc

Over the years we have seen Specialists, Doctors, Nurses, been to Clinics, attented meetings, done everything we have been asked to do & yet we find ourselves reading about parents of children with chromosome abnormalities still fighting for there children's rights. We have had 21 years of doing just that, we fought every step of the way for our son as he hasn't got a "Named Syndrome" it makes me so mad that kids with rare chromosome abnormalities or unusual disabilities get pushed to the back of the cue & left to get on with it, sadly this is still going on & we are still fighting.

So for all new mums out there you are sadly going to need to be very tough both at this moment & in the future, your kids are worth it, you are not alone, others have been there before you & it seems others will also be there after you, The medical & social professions help up to the age of 18 but i am rapidly discovering after that you are very much on your own after that, you need to find good friends with kids who have similar disabilities & talk don't be afraid to discuss your kids you will need these friends as sounding boards & as information sources as everyone seems to be told something different.

Good luck to you all 

[SpottedFoxx]

Welcome Mandy!  This is a great forum!  My son has a deletion at 16p11.2.  Fortunately for us, it's one of the "known" ones.  However, doesn't change the fact that we are always on guard to ensure he gets everything he needs.  

[RiverTam]

The transition from programs targeted to minors with disabilities to programs targeted to adults with disabilities can be difficult.

Have you checked out these sources of assistance for adult children with disabilities:

1. Easter Seals -- In my region, there are a couple of Easter Seals camps that offer respite care and recreational camping for adults with disabilities during the summer and on weekends.

2. University programs -- In my area, SIUC has respite camp/recreational camping for adults with disabilities in the summer.

3.  SSDI -- once a kid with a disability reaches adulthood, he/she may be eligible to receive SDDI based on the parents' benefits, if the disability was a childhood onset disability.  If you get turned down the first time, find an attorney with experience in SSDI applications and appeals and apply again. In my area, people do this on contingency, so you won't have to pay up front. 

4.  SSDI should make him eligible for Medicare. Some of our local nursing homes will take adults with disabilities for respite care/short term stays. My husband had a client whose son who stayed at a nursing home one weekend a month. 

5.  Medicare may also make him eligible for home health care. They may be able to help with some activities or daily living or give you a visiting nurse to check in and see how things are going or a social worker who can hook you up with other resources.

6.  My community doesn't have a lot of adult daycares, but there are a couple. They provide activities in addition to supervision, which can be helpful. 

7.  If he is going to inherit anything from you, you should talk to an attorney about setting up a special needs trust so that he can inherit those assets without being disqualified for SSDI.

Edited by RiverTam - 12/22/11 at 7:50am

[Mandy Rayner]

Thank you River Tam for your info i will look into this & see if something is in operation in our area, Yet again i am finding info from a parent it seems so unfair we have to get this from someone who has been there & done it why oh why is it never offered from social services or other professionals ???