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What if your SKIDS never leave home?????

dledden's picture

Submitted by dledden on Sat, 02/09/2013 - 3:01pm

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OMG, I had this whole post typed and hit enter and something happened and it DISAPPEARED, WTF?

Here we go again. My skid is 9, autistic, has motor coordination disorder, and a host of other physical/developmental issues that go hand-in-hand with the above-mentioned diagnoses. He lives with us 24\7 as BM is a welfare-living heroin addict and a waste of oxygen and skin.

Last week, skid's outpatient occ therapist send home index cards with practice exercises for skid to start doing DAILY at home. They are nice, laminated index cards with hand written directions on the back for me or DH or teacher, basically any adult to instruct him on how to do them. When I looked at them I immediately thought "are you fucking kidding me, a fetus could do these simple hand movements". So, I reach out to her to basically ask WTF???

She tells me that skid's progress in OT is basically NADA; he struggles with the simplest of tasks and challenged me to do these exercises with skid and to observe certain movements, etc. Of course, I assume i'm EASILY going to win this one, so I heed her advice.

Well, needless to say, she was right Almost FELL THE FUCK OUT OF MY CHAIR watching him struggle to do the simplest of hand movements! It was then that my WORST FUCKING FEAR on this planet set in: THIS KID IS NEVER GOING TO BE SELF SUFFICIENT!!!!!!!!!

Now I wonder, will he ever be able to drive a car, get a job, take care of himself, any of it? Or am I going to be stuck with him in my home forever?

I don't know who to talk to about it, pediatrician, therapists, etc. so here it is for YOU steptalk.....HELP ME!!!!!!!!

dledden's picture

Submitted by dledden on Mon, 02/11/2013 - 7:42am

HELL NO, my bios are not going to be strapped with this headache if I die. I have to make sure of that!

Pilgrim Soul's picture

Submitted by Pilgrim Soul on Sat, 02/09/2013 - 9:19pm

There are services that are provided differently in different states. The fact that in one state a kid with a disability get SSI does not mean that's the rule everywhere. In my state it's not an option.

I think you need to reach out to a disability-specific organization ( Autism Speaks, something like that in your state) and talk to them. They will know what is possible to get your SS, via Medicaid, your school district or health insurance. How much OT does he get in school? One session a week? Individually or in a group? If the progress is zero, he needs more OT or OT done differently. How far are you from the nearest children's hospital? Get him evaluated there. Schools re-evaluate every 3 years - OR sooner if parents request it. You could request a re-eval from a different OT, or the one with a higher degree. Does he need PT also? Does he struggle with just fine motor or also gross motor movements? Can he do jumping jacks? Ride a bike? May be PT could also help him develop those skills.

I know it is very hard to be in your role, but by helping him now and raising the trajectory of his life you will eventually be helping everyone in your family, INCLUDING your biological children who will have to do less for their step-brother when you and his father are gone. You owe it to them. I do not think disengagement is the answer.

oldone's picture

Submitted by oldone on Sat, 02/09/2013 - 11:15pm

You will be doing this child a horrible diservice if you do not help him eventually be able to live outside your home.

Sometimes people mistakenly think that keeping the child at home is the kind and compassionate thing to do. And that only "bad" people place their children in an institution.

I am not suggesting that anyone "warehouse" a young child (or even an adult). But the parents are NOT going to live forever. I've seen adult children with disabilities that were devastated when the last parent died. Even though siblings were willing and able to take them in. The disabled person had NEVER lived in a different place and was just distraught.

I know of several individuals that live in group homes and are very happy. That doesn't mean that their family has deserted them. They can have a full social and work life.

Because I am older I have seen the long term effects of some of the parenting. Even my friend's extremely mentally and physically disabled child has a good life. Not the life I would want as an able person, but he loves his job and indepence. Another's Down son also has an apartment in a group home and a job with lots of help from a life coach. They see him all the time too. He has such pride in his work.

dledden's picture

Submitted by dledden on Mon, 02/11/2013 - 7:36am

I just found out from my bio son's behavior therapist (he has post traumatic stress disorder, as do I, from what my ex husband did to me), that I should be applying for SSI for both my bio AND for skid. I had no idea that those types of disabilities you could get money for? I'm in PA and it's at least worth a shot, worst that can happen is we get denied.

Skid gets OT PT and Speech at school. He gets OT and PT outpatient, Here's the problem for those of you who don't know: my DH ignored all of skids needs as a young child. Pediatrician showed me his diagnosis in his medical records made at age 3. I started dating DH when skid was just about 6. So at minimum for 3 additional years, he never received one single service! DH and his parents, with whom the child lived, are ALL responsible for how severe these delays are now. Someone above asked about his PT issues, they are more severe than his OT issues. No he can't ride a bike, do a jumping jack, etc. When he entered kinder at age 6 his Eval report stated 'the child is unable to run'.....

I know DH is still in denial. I KNOW he thinks skid will grow up and be self-sufficient. I KNOW he thinks this. He does not SEE what I see. I need some kind of will drawn up, something that if DH dies before skid turns 18 that he goes back to his grandparents. If after 18, I do't know. I don't want to be stuck with this FOREVER!!! If he can go in a group home, that's fine, but when i'm OLD, I don't want to be caring for someone else's kid. I want to retire, dye my hair blue, go to florida, blah blah blah!