Conductive upbringing and more dilemmas

"Geraniums on Edith Cavell's grave", by Susie Mallett

Norwich Cathedral, 11th September 2011

Indecision

Flip-flopping

Eating humble-pie

Going to someone with tail between the legs

“The procedure is safe and quick, but it is still not fair.  My son fell asleep after crying for a long time about how scared he was and asked a million times how much it will hurt.  He doesn’t deserve that. It may be the right thing to do, it could change his life, but it kind of sucks anyway.”

The parent who wrote the paragraph above had just decided, against her original wishes, to go ahead with an operation for her child.

Read the full story here on this always very good blog:

http://wearingcostumes.wordpress.com/2011/09/22/perky-for-percs/

PS to “A cyberspace conversation with a conductive parent”

"North Norfolk undulations"  
by Susie Mallett September 2011

Just my part of a conversation as a conductor-carer

You know, when I was a carer and someone asked "And how are you?", there was a feeling inside me that I cannot describe. A dilemma, not knowing what to say.

As a carer I never felt it all right just to go off, although my client’s family helped out and I was able to carry out my work in families, occasionally working away from home for a week at a time.

While away I was always sort of worried and felt responsible, and could never completely concentrate one-hundred percent on my work, or on myself.

I never thought about myself first and what I wanted to do, even when I knew that everything was all right at home. I suppose that I felt guilty.

Not thinking about my own needs did not often matter to me, I thought that it was often better to have to think about someone else, but in fact it really was a relief when someone asked “How are you?”, thus allowing me not always to feel smiley and even occasionally to tell someone the truth that I was not managing too well that day if this was indeed the case.

The only person who ever asked me this question was my partner’s mother, I suppose that she knew. Most other people gave me the feeling, as mentioned in A cyberspace conversation with a conductive parent that it is just not done to get overwhelmed by it all and to wish for even five minutes alone:

http://www.susie-mallett.com/2011/09/cyberspace-conversation-with-conductive.html

This was when I got into the habit of using the nights to feel by myself, to be uninterrupted with my own thoughts and to do something like painting or writing, something just for me. And sometimes the lady who knew invited my client out for the day so that I had the house all to myself for hours!

A cyberspace conversation with a conductive parent

"My worries" by SB

(Still have a hitch in computer please view this picture,

painted by a twenty-one-year-old client of mine, from the left-hand side!)

This is how it went

That holiday destination sounds like a lovely place.

Had a very happy week, just the two of us.

That must feel like a dream come true.

I know how much you love your child but it must be lovely to just be the two of you for a whole week.

Absolutely.

I think some people feel ashamed to say that they enjoy not being with their disabled children, but I think that this comes more from the attitudes and reactions of other people rather than from within the families themselves. It is all part of a conductor’s job, to help families feel OK about this.

There is a huge gap in the notion of “transitions“– which focus on the individual child/child-adult and not on the family/parents. I would like to see so much more work done with parents, not just their understanding of CP/CE, nor even the struggles they face, but also on “letting go”.

How I wish that we as parents could have that help as we face “letting go“ of our adult child into her own accommodation soon.

I have done a lot of work with the partners of people with MS. They are often shocked when I asked them: “And how are you?” They are not used to it.

But just by discussing the places where they could do with some assistance and where they think progress could be made it already begins to feel like a conductive lifestyle is emerging.

Yes, I like that.

Have you at last found somewhere for your adult-child?

Yes we have.

All being well.

Is it what was wanted, with best friends?

Three of them in a bungalow. What was wanted? I hope so, I do hope so.

We cannot know until it is tried

It is the same with us all. We do not know either how we can live until we try it. It is just easier without a disability to give something else a try if at first it does not succeed.

It is the same for us all, “becoming” very conductive.

Your child will have lots of people helping to make it work but what about you two (parents), who will help you?

Good question.

Not taboo but part of the job

How many of us have had conversations like this one? How many of us have had conversations like this that we remember for a long time because they had a huge impact on us?

I actually wrote this one down because I did not want to forget it and I then realised that I wanted to share it with other people so I sought permission to do so.

It should not be taboo to ask partners of very sick people “And how are you?”, but I know from the reactions that I have had over the years when I have asked this that it is a question that is rarely asked. I know also from personal experience as a carer and partner of someone with MS that I was only ever asked this question, now and then, by one person and that it made me feel good just being asked. Just knowing that someone knew that it was not easy was enough to help solve some problems.

Parents and carers and partners all need to be reassured that it is all right and quite usual to be feeling how they feel. They need to be encouraged to ask questions and even to ask for assistance. These people are often so worried because they believe that it is just not acceptable when caring for someone with a disability to be angry, upset or frustrated or to wish for time alone or with friends. It is just not done to ask for help or to say: “I do not feel like I am doing well at all”.

Of course there are conductors out there who are already offering families help in learning how to “let go”, helping families to accept the fact that they are allowed to wish for time alone, and offering help to research for ways for it all  to be possible.

I have hopes that with the formation of many more small conductive centres and with more self-employed conductors developing a different way of working, developing a long-term clientele, there will be more scope for working within the home environment, so that conductors can give more thought to the wider questions involved in living with a disability in the family and to approach the matter of offering assistance to the parents, carers, siblings and partners as touched on in the conversation above.