Cerebral Palsy
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"Mothers who listen with more than ears." Middlesex University Research Project

Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
edited October 19 in Cerebral Palsy
This research requires participants - would you be interested?

The research is being led by a D-Pysch student at the New School of Psychotherapy and Counselling accredited by Middlesex University: This research is exploring each mother's experience of communication between herself and her complex non-verbal Cerebal Palsy child.

Looking for mothers of children with complex Cerebral Palsy where the child is:
  • Unable to communicate consistently using their voice, hands or feet
  • Over 3 years of age and has external nursery provision or a care package of support in place
  • Not yet a teenager
  • Not in a critically unwell condition currently
In addition to this your child was:
  • Diagnosed at or around birth with Cerebral Palsy or given some indication that Cerebral Palsy was a possibility from the start
  • Unresponsive and unable to feed at birth
  • In intensive care at birth
The researcher is interested in mothers' experiences of communication with their child.
If you feel emotionally able to share your experience in an interview, then this research might be something you will be able to contribute to. Part of the interview will include producing some form of artwork (no art skills are necessary.

For more information, please contact me, Mazal Tasgal:
Tel: 07792714170
Email: [email protected]
Scope
Specialist Information Officer - Cerebral Palsy

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Replies

  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    @forgoodnesssake, would Communication Matters be interested in this at all?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • forgoodnesssakeforgoodnesssake Member Posts: 312 Pioneering
    Hmm...this is an interesting one.... Wonder why they only want mothers?  In my experience much of this sort of research focuses on "mothers" and their "intuitive bond" and personally I feel it is quite a dangerous route.
    There is much discussion on various forums around the belief that somehow mothers in particular know the innermost thoughts and feelings of their disabled non-speaking children....many mothers (and fathers) do know their children well enough to be able to interpret expressions or noises or movements in a way that unfamiliar people couldn't.  But I and many other mothers I know very actively refute the idea that we can be our children's true voices and know their innermost thoughts and feelings simply because we are their mothers....
    I would go so far as to say this type of view CAN, sometimes, actually hinder a child getting access to appropriate AAC (alternative and augmentative communication) especially if their physical access needs are very complex.  I personally have met more than one child with complex CP who has no obvious objective method of communicating and whose mother, when asked, has just said words to the effect of "I know when he's happy"...in a very protective way.
    And I think there is a much bigger issue here that I really hope these researchers understand and that is that in some cases, again especially if the child's needs are complex, there can be a huge amount of over-protectiveness, fear that a their child may not have their needs properly met by outside agencies etc etc...and that can also play into the notion that if only mum really knows the child then it's safer for them.
    I am not in any way criticising any parent in this position...just highlighting the complicated emotional issues that may also be involved.
    I am more than happy for @Richard_Scope to share my response with them (my son would have fitted the criteria well but about 10 years ago!)
    So, I can certainly put it on to CM Friday announcements and also 1 Voice parents and a CP  FB group I am on.
    PS.  I imagine @Richard_Scope you are not overly surprised by my comments!

  • AmylevyAmylevy Member Posts: 1 Listener
    edited June 9
    This Research is exactly about what you are describing @forgoodnesssake it's looking at experience and within experience there will be differences. There are socially constructed pressures put on mother's so perhaps it's about mother's being able to say I don't want this "mother" role society has carved out for me. 

  • forgoodnesssakeforgoodnesssake Member Posts: 312 Pioneering
    I hope you are right.  I guess it's just that over the years I have seen too many such student/phd research projects which have clearly been constructed by people with very little real knowledge of the issues or at least the complicated nuances.  And I would hate to see anything which, even unwittingly, played into the "no need for AAC yet" camp...So I hope this person and their department have done some proper investigations into early input AAC and its crucial role  (no, low or hi tec) and some of the obstacles people can face.
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