Posted by: CP Mom | 2009/05/31

Living with a disabled child

Sometimes, CS, just sometimes it gets to much for me......not that there is anything I can do about it....this is my life....sometimes its just so hard.

She' s 12 now but looks like a 17year old, fully developed and full of shit like any teenager. She' s physically so strong already that I cannot force her to do things she does not want to do. Monday last week G and the Care giver had to physically pick her up and force her into the school bus (i leave early for work) then the rest of the week I just kept her out of the school.

I know I have to chose my fights and that she has to have choices and that I have to let her at least TRY and dress herself when everything is just so easy to do for her. I know she needs more time than " normal" kids or people - i know, i know, i know......

I have recently gone to 2 x 21st parties with G and the kids and left her home with the care giver (which in fact is nothing more than a gloryfied domestic worker) because she might fall over things, she might mess on herself, she might she might she might - and at the end i' d not enjoy it in anycase.

I' ve felt so guilty that i' ve bought her all sorts of things for when she stays with the domestic etc.

She' s happy with the domestic it' s not as if she' s unhappy when I leave. Yesterday I took her with me to Checkers and she acted up as she always does in Malls, doesnt want to walk, wants to push the trolley alone, etc etc eventually i took her by the arm pinched her and said DO YOU WANT TO GO HOME AND STAY WITH LULU????? she then started to cry - i then rushed and bought what i needed and said to myself (as i have many times) i dont know why i do this to her and to myself! Once we' re home she' s so happy cannot wait to run to the domestic or her doggy to play. She' s happy at home - I feel guilty leaving her at home....

She needs to be around other people? She needs to be able to behave in public? I feel like a dog when I leave her at home and go shopping or eating out or anything - she' s a person - she also needs to get out.

I' ve tried the bunny farm i' ve tried the bokkie park - she hates animals (except her doggie) - im so heartsore today....

what life lies ahead for her?

She cant even colour in, can' t count further than 11, can' t dress herself completely, can' t make her own food, she drinks juice out a squeeze bottle, when we are at friends i must always watch that she does not break things or fall over things or down stairs, she cant fix blox like stars and squares into holes...she' s difficult always crying and stubborn not to do what I want her to do.

I spoke to the teacher this week she agrees that Ne seems to have a double personality - one moment she' s a happy nice little girl and within a flash she' s swearing, stubborn, refuses to do things and everything is " umfuni" (i dont want to) - and just like that it all changes again - but lately its as if the stubborn stage is lasting longer than the happy one.

G sá y' s she' s a different child when i' m home and when im not there - Lulu (the domestic) agrees completely - the moment i land home it seems that the shit starts.....

I dont know what im really asking here - its just not easy......

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Our expert says:
Expert ImageCyberShrink

Hi CPM. Regards from the cat, who, after being on heat for 2 months, screaming and running round like the wild thing she is, has now quietened for 2 days. So I type with fingers crossed, so my spelling may be worse than ever !
Sory to hear of this patch of discouragement. I suspect most of us feel like that at times ( especially those trying hard to do something worthwhile ). The issue of Ne's newly acquired physical power is a very relevant point most folks don't think of. In some ways, it may be necessary to avoid physical confrontations in part so as not to alert her to the degree of power she now has.
From your story, I wonder whether part of the proble could be this. Unfairly ( to yourself ) you feel guilty when you leave her alone with a competent caregiver, so you reward her by buying her gifts and treats --- rewaerd her for staying at home. Then, having taught her that staying at home is to be rewarded, you expect her to go to school, instead. She's happy at home, but you feel guilty for letting her be happy there ? And then when she whines in the mall, you threaten her with sending her home where she's happy. Can you see how she could find that confusing ?
Maybe it is good for her to get out and meet people, but maybe not on the occasions that are handy like when you have shopping to do. Maybe plan somem shorter ( till she gets used to them and behaves better ) outings JUST so she can be out and among people.
She may act up with you because at some level she recognizes that you care more deeply than others, and that even with her limited skills, she might manipulate you ?
It ain't easy. If it was easy, they could leave such jobs to Julius Malema

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