Ask an expert
Question

31 Jul 2008

It&#39 s not easy.....sometimes....
Getting home yesterday I sat in my car with my head on the steering wheel… ..not wanting to face Nê  and the evening ahead… .life with a disabled child is so not easy, people always say “ oh you are so wonderful to do this”  / “ oh we so admire what you are doing”  but I don’ t think they have a clue what it’ s like… ..and saying that does NOT make it easier for " us"  people.

She’ s 11 and she’ s now only starting to “ sing”  nursery rhymes like “ kumbaja lord”  and “ wielie walie”  and “ ding dong dell”  only a word here and there… at what age do normal kids do this ? 3 ? So for the last 8 or so years she’ s still been in the young toddler stage… … .

I don’ t know how I will cope sometimes in years to come, having a “ baby”  around all the time… ..Last night I’ m making cutting strawberries and she reaches for one knocking over my glass of cooldrink … ag fifaoufuoaa[k’ a I can burst a veign… .yeah I know she doesn’ t see the glass and the sprite in it’ s colour doesn’ t help make it visible either, but cant she LOOOOOOOK… ..

Coping is not easy.
Having no-one to share / talk with is not easy.

I so often tell myself… just breath… … even when I bath she sits on the bathmat or toilet saying “ I’ m waiting”  –  I tell her to go out that I can just have a 10minute break –  but she folds her arms and sits down and say’ s “ I’ m waiting” .

Saturday mornings I go to Weigh Less class and she’ s such a disturbance. People are tolerant but maybe I’ m oversensitive… … 

At Spar night before last the cashier kept on looking at her and then asked “ how old is she”  –  this is soooooooooooooooooooooooo the first question everyone asks as to say to me “ she’ s not acting her age”  –  she’ s 11 and has the body of a 16year old and the brain of a … . 3year old… ..I just said to her 11 then the usual 2nd question pops up “ what school is she in”  –  Oh God I can just sink into the ground –  I then (as usual) say the school name and they “ OH… … .”  –  then what follows? The “ I’ m so sorry-look”  and always some remark like “ it must not be easy”  / “ shame, how do you cope”  / “ oh you are such a wonderful for doing this”  / “ I would never be able to do it” 

LIKE I AM ABLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

From the unloved Mom this morning

Answer 464 views
Expert
CyberShrink
cybershrink

01 Jan 0001

I know what you're talking about. And part of the reason people do the " How wonderful you are to do this" thing, is their sheer enormous relief that YOU are doing it, and not them. And ys, it's difficult to handle the many things the disabled person can't do, and hard not to blame them, AS THOUGH their weaknesses were deliberate. NOT knocking over your glass most of the time is an achievement of Ne's, which only sometimes fails. Notice the times she DOESN'T do it, not only the times when she does. It's hard ; anyone who says it's easy hasn't tried doing it. And as I find now, having lost the person who became so awfully dependent on me, you both regret every single time you were less than saintly ( a most unreasonable expectation to place upon oneself, but very natural ) and, now not having to spend all those hours of work caring for them, you feel so literally At a Loss.
As Kay G suggests, why not explore further settingnup a Support Group, as there must be numerous others in a similar situation -- including many parents at the school Ne goes to. Maybe it'd be good to mix carers of mentally handicapped people with those caring for the handicapped elderly. Not only can you give sheer emotioanl support to each other, but swap tips that nobody else would have thought of or tried. I know you've explored this route before, but keep trying --- one day it will work. Maybe don't limit it to CP ; some problems are unique to a particular condition, some are much more general. And the problems for the caregiver are usually very similar.
And Adul CP is right about how to deal with sympathetic but clumsy other people, by taking the initiative and answering their question when you see them looking puizzled, rather than waiting for the inevitable questions. Its not wrong for them to be puzzled or sympathetic, however clumsily
And I suspect that the only person on earth who doesn't love you this morning, is you, yourself.

The information provided does not constitute a diagnosis of your condition. You should consult a medical practitioner or other appropriate health care professional for a physical examination, diagnosis and formal advice. Health24 and the expert accept no responsibility or liability for any damage or personal harm you may suffer resulting from making use of this content.