The Impact of Childhood Disability

[TKDLady]

The Impact of Childhood Disability: The Parent's Struggle


I joined a support group through yahoo a couple years ago due to a friend's son drowning and now being profoundly handicapped. It is also the reason I joined this group. I tell you this because this situation with my friend seriously affected me emotionally and mentally due to our closeness and I have since tried to learn as much as I can and help him as much as he will let me. Duke asked me to become one of his News Staff members quite a while ago and I happily agreed. The following article was posted on my yahoo group and I wanted to make it a news article but I would not have been able to paraphrase what this man said and it so opened my eyes to what my friend must be going through. Some of the things in this article relate to my own struggle to understand what happened and why. I have gone through and am still going through some of the "feeling states" that this man talks about. I wanted to share this with you all and maybe help someone else out there going through a similar situation. The article is long but worth the read. I want to thank you all for providing such a wonderful place to express my inner most feelings and thoughts. These last two years for me have been painful and you are helping me get through it.

http://www.cdlsusa.org/publications/...isability.html

[Meanon]

That's a wonderful article, tkd lady. Thanks for sharing it.

I find that when friends suffer, I always find it more difficult to handle if it's something to do with their kids. I think it's to do with being able to empathise as a parent and the fact that if your child suffers, it's much worse than if you do. I have one friend whose child was born with physical and learning difficulties and another friend who died who had kids she had to plan for and say goodbye to. I'm glad posting helps and that you are getting through it.

I found this interesting: alternately anxious, angry, denying, guilty, depressed or fearful, but they were not internally "disturbed" people. There's a similar distinction drawn between psychopathology and normal functioning.

This may be a reflection of the therapeutic approach, but I wonder if also there's a fear of being labelled abnormal or ill when you suffer in some way. It's very common as people hate feeling out of control. It's a fear I had the one time I had difficulty overcoming a problem and I had to overcome the fear first as it wasn't helpful. There is research evidence that fear of emotional distress is linked to poorer outcomes than acceptance of it.

In my practice I find that even the most severely affected people have the same reactions as those who may be suffering, but not so much as to be classed as "ill". It's more a question of time affected, severity, rigidity and type of consequences than the internal thinking or reactions being fundamentally different. All the thoughts, reactions etc make perfect sense from the view point of the person and in some ways are functional, which is why they persist. It's only by understanding exactly what the meaning and function is that acceptance options for change become clear. I think that "normal distress" and "psychopathology" are on the same continuum, they are just labels that describe severity.

[TKDLady]

Thanks Meanon. I may have to use your therapy skills one of these days. Some days are certainly harder to get through than others.

[Meanon]

Anytime tkdlady. Well, anytime after 19 June when, at this rate, I'll be failing my exams

[TKDLady]

Thanks, now study!!!!!

[darkangelism]

i think it comes down to perception, just because a child isnt "normal" doesnt mean that they cannot be "successful". I understand how parents live vicariously through their children. However love overcomes that, and if you love your child you will be fine with them being disabled. i am disabled so i understand it from that side at least.

[Meanon]

I agree DA. When I was talking about normal, I was referring to the self perception of the reactions of the parents.

In terms of their reaction to the child, whether they were born with the disability or acquired it during life makes a huge difference. Both have reactions of loss, which as you say is about loss of what could have been, but with a parent of a child born with a disability they usually get over this fairly quickly as they begin to love and accept the reality of the child that is there. My friend was like this, it was an issue at birth, after than she worried for him but she was fine with his disability and celebrates his successes which are just as real as any other child's.

I think it's harder for the parent whose child acquires a disability in life. There is all the guilt to do with them feeling they should have been able to prevent it, anger and confusion at why/how it happened, difficulty accepting that the person who is now their child may be very different to the one they knew before the accident. usually this happens if brain function is affected, physical disabilities are much more easily overcome. This is a loss for which their is a reminder every time they see their child. They do still love them and are proud of their achievements, but the loss is not just about expectations, they have lost the person that they knew.

[TKDLady]

My friend's son has permanent severe brain damage. He is like a baby only worse because he doesn't even react to his environment. He doesn't do anything on command, can't eat, can't walk, can't talk and probably never will again. His dad relives the day he drown over and over. That is what is so hard.

[darkangelism]

i wasnt responding to meanon, i read the article and he had mentioned normal in there.

[Meanon]

Originally Posted by darkangelism

i wasnt responding to meanon, i read the article and he had mentioned normal in there.

I see - we both picked up on the references to normality - but in different contexts.

My friend's son has permanent severe brain damage. He is like a baby only worse because he doesn't even react to his environment. He doesn't do anything on command, can't eat, can't walk, can't talk and probably never will again. His dad relives the day he drown over and over. That is what is so hard.

That's just awful tkdlady.

[TKDLady]

Actually, I relive the day over and over as well. How I wish I could turn back the hands of time and make it all right again.

[Meanon]

That sounds very hard to live with, going through the trauma every day. Were you both there when it happened?

[TKDLady]

No. It is a long story and maybe one of these days I will PM you. He was at home when he got the call and then he called me. There are circumstances between us that make it a bittersweet day for me. Started out great but ended horribly. Since then our friendship has deteriorated to almost nothing now. That is why the article helped me some. To understand some of the emotions he must be going through and to see if there is hope of getting his friendship back some day. I keep that thought in mind to keep from going totally crazy.

[Meanon]

I don't mean to pry, I was just wondering whether your reactions were due more to trauma or to loss.

Lost love is so hard to overcome, but it's much more manageable if you can make some sort of sense of it. If I were you I'd continue to try and understand and when you are less fearful of your reactions, you may find that your focus turns more towards yourself. I find that when people suffer emotional distress, it's often internalised into a fear about ourselves, but we project it outwards onto our interactions with others/the world and then we kind of get stuck in repeating patterns which keeps the reactions/belief/distress alive. Uncovering the meaning is the key to recovery.

I was about to type a long example from my own life: overcoming my reaction to my separation. But I am avoiding studying AGAIN so PM me if you think I am talking Double Dutch and I will explain what I mean soon