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Posted by: CP MOM | 2008/07/31

It' 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

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Our expert says:
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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 exmanication, 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.

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Our users say:
Posted by: AngelFace | 2008/07/31

Hi CP Mom I can just imagine how difficult it must be for you.
You are allowed to get frustrated sometimes as you are only human. I am a disabled person myself (Using wheelchair)
and have a beautiful Baby Girl 18mths and another on the way
I am already preparing for the hard times my Angels will sometimes face in the future because they will have a disabled Mom.
I would suggest you call te DPSA ( Disabled People of SA) as they have a Structure for called DICAG (Disabled Children Action Group, This is a support group for Parents with disabled children 011 453 2935

Reply to AngelFace
Posted by: Adult CP | 2008/07/31

Hey you are not old! All I can suggest is that you try not to look into the future, but take one day at a time, it does make life easier to cope with.

Reply to Adult CP
Posted by: Nanny! | 2008/07/31

Hey CP Mom,

When I was in Matric I cared for the most amazing little guy in the world. CP had left him extremely physically and mentally disabled, and at 9-yrs old, couldn' t walk or talk. He only mustered the word ' car' .

Wouldn' t you perhaps concider getting some form of ' Au Pair' ? Maybe just for a few hours a day, or a few hours hours a week? (I did this for a rediculously low price, and his mom got some ' me'  time, and I got some pocket money and a lot of love!)

I don' t know much of your background, (sorry, just hopped onto the train here!) but wouldn' t you even concider sending Ne to school/playgroup for a few hours, say once a week, where she is able to interact with other children?

You ARE the greatest mom in the world.

Reply to Nanny!
Posted by: CP MOM | 2008/07/31

My mom' s 65 and struggles with her one leg. She cannot cope with Ne anymore and when I do ask her to look after her for me she say' s its better at my place coz all ne' s stuff is there and then i' ve still got them both there - and ne acts up when my mom is there - so it' s not a help.....

I moved to the plot because I could save R500 per month and i cant afford to put her anywhere even weekends - also what if she gets abused.....

P is having her baby monday and although it does get to me sometimes it' s not now the cause or adding to how i feel as im glad for her at least she' ll have what i never had or will have she' ll not lead my life....

Maybe it' s old age ? at nearly 42 looking at my life and c' ing where i am and what i have ? Who' s in my life, how they treat me and that im on a road going slowly no-where...i just don' t know ....

thanks for the help tho

Reply to CP MOM
Posted by: Adult CP | 2008/07/31

I know that you would not put her in a home, but you do sometimes need a break from her. Can your Mom perhaps help more oftern? Also perhaps you could start a support group by contacting the special schools in the area? Give it a try?

Maybe this down phase that you are in is partly because P is having her baby very soon? This must be hard on you under the circumstances.

Reply to Adult CP
Posted by: Kay in Gtown | 2008/07/31

Hi CP Mom
I hear you about how many different types of CP there are. Maybe you need to look for a group with mentally handicapped children with epilepsy from any cause (my niece also has epilepsy). My sister-in-law is involved with Aurora in PE and meets a lot of people that way - and she often says she' d be crazy without her friends who know what she goes through - and who she can laugh and joke with, without people giving her weird looks. When people give her the " Heaven' s Special Child"  type talk she now rolls her eyes at them...

Reply to Kay in Gtown
Posted by: Maria | 2008/07/31

(((Hugs))) CP Mom. I think all parents sometimes feel that they cannot cope with their kids, disabled or not. Can you perhaps get together with some of the other parents from Ne' s school, people who have similar challenges to yourself? I understand your reluctance to put her in a home. Would you consider doing it for a couple of days though, just to give yourself a break? You do NOT have to feel guilty about doing something like that, you' re human and you need some time off too.

Reply to Maria
Posted by: CP Mom | 2008/07/31

Hi Adult CP (G)

I know you are there....you' ve been for so long....thanx

I think I made a mistake to move to the plot. I wanted for her so that she doesnt have to climb stairs and have a puppy and and and...i just feel so alone and life ahead seems so endless - dressing her and her fighting me on it, feeding her and her fighting me on it, doing her hair and her hitting me and saying " i dont want to" , her falling and breaking stuff, hurting herself.

I' ll do this for the rest of my life.

And no - putting her " somewhere"  is not an option.....(not you g but some who would suggest it)

yeah my mom say' s any normal child needs the same care but yeah a normal child will grow out of it and become a person who' s independant.....i will always just care for her, dress her, watch her.....

i always failed to understand why people killed themselves or even take their kids with them i guess they recon well who else would look after them if im gone!

Reply to CP Mom
Posted by: Adult CP | 2008/07/31

Ag shame, CP mom, I do feel for you and I do understand that life with Ne is not easy. But I also don' t know how to help you in your situation other than to say I am here if you want to talk, or cry or scream or what ever else! You know where to reach me. Remember you are only human and it is not a crime to ask for help. And for those people who ask stupid questions, just tell them straight out she is 11 and she is disabled - a straight forward answer like that usually makes them shut up very quickly.

Take care.

Reply to Adult CP
Posted by: CP Mom | 2008/07/31

Tsheps they say God knows who to give these kids to (she' s adopted) I think he made a major error in me....

Reply to CP Mom
Posted by: CP MOM | 2008/07/31

Hi Kay

There are NO support groups for kids or adults with Cerebral Palsy - and I' ve even tried to start one. The problem is that with CP you can have so many different tipes. I even looked for a shrink but you find either a child shrink who does not understand the disability or one that' s worked with people who are physically disabled but mentally fine. I even met someone on this site who is physically disabled and once a welfare worker who was in a wheelchair but also mentally fine - so no there is no support or groups I can go to......

Maybe joining the Depression Group in Benoni is the answer for me i dont know sometimes like now i think who' d give a shit if I died? what' s the point? why fight for everything all the time....it' s just to hard....i give her her epilepsy meds this morning and I think thank goodness the medical aid is paying the R600 for it or i' d be even worse off financially - then I see her get a fit in the car a loooong one and i think here we go ..... another neurologist visit R950....medical doesnt cover...

Reply to CP MOM
Posted by: Tsheps | 2008/07/31

God loves you for what you are doing ,and I LOVE YOU TOO....

Reply to Tsheps
Posted by: Kay in Gtown | 2008/07/31

Dear CP Mom
My heart just goes out to you. I have a niece who is 24 with a mental age of 1yr. Sorry for this, but I just have to say: What you' re doing is admirable. It does sound as though you need support and to know other folks in your position. Are there no support groups in your area? Or failing that, there are plenty of on-line support groups for just about everything (I belong to a depression forum where we can all just speak freely and have people understand how it is!) and it often helps to be able to say THIS IS JUST SO HARD to people who know exactly what you mean...

Reply to Kay in Gtown

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