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DISABILITY-RESEARCH  April 2010

DISABILITY-RESEARCH April 2010

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Subject:

Re: Experiences with parents

From:

Deborah Chinn <[log in to unmask]>

Reply-To:

Deborah Chinn <[log in to unmask]>

Date:

Fri, 2 Apr 2010 09:56:36 +0100

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (136 lines)

I'd like to recommend a book written by Dan Goodley and his colleagues:

McLaughlin J., Goodley D.A., Clavering E., Tregaskis C., Fisher P. 2008. 
"Families with disabled children: values of enabling care and social 
justice". Palgrave

which illustrates some of the challenges and complexities of being a parent 
of a disabled child, and parents relationships with professionals.  I've 
also been inspired by the work of Hilton Davies, who created the parent 
advisor programme in the UK.  His approach is that asking parents to be 
eternally vigilant teachers and trainers of their disabled children puts 
intolerable pressure on parents.  He feels that a key role for professionals 
is to offer practical and emotional support to parents so that they can feel 
in a position to develop their own ways of being with their children based 
on warm and loving relationships.

My own experiences of working with parents of people with intellectual 
disabilities is that trying to "get parents to change" doesnt work.  Parents 
most likely feel criticised and got at (I would too!).  My own practice has 
been informed by systemic family therapy and solution focused ways of 
working with parents, which I have found very useful.

Apart from Dan Goodley and co's work, the interrelationships between 
disabled people, their parents and professionals is under-researched, 
especially where there are cultural differences.

Deborah


----- Original Message ----- 
From: "KELLY REDDEN" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, April 01, 2010 5:22 PM
Subject: Re: Experiences with parents...just so we are clear...moredetails


Hello-

I would like to add more specific details to clarify:

-Parents not following critical advice pertaining to their child-meaning the 
parents are suppressing self stimulatory behavior by simply stopping it, not 
listening to advice as far as allowing them to do it or finding a suitable 
replacement behavior.  this is dangerous and uncalled for, it only hurts the 
child.

-Parents behaving irrationally or aggressively towards them-A parent and her 
new boyfriend recently attempted to extort money from my practice

-Unfounded accusations towards a professional-Haven't experienced this one..


-Parents missing or 'forgetting' scheduled appointments-This happened with a 
teen in desperate need of positive feedback, his mother would speak 
negatively about him in his presence -every- time I met with him.  She also 
would also 'forget' about our appointments-no call no email.  Not very 
considerate.

-Parents telling children with autism 'don't attend university'-See above, 
the same mother

-Parents speaking negatively about their own child in front of them-See 
above, same mother...getting the picture?

-Parents ignoring emails and other correspondence regarding their child-This 
has happened twice, do you think its reasonable to repeatedly request a one 
hour meeting, either in person or over the phone to discuss your child's 
program....for seven months???

-parents ignoring or disregarding terms and conditions signed with 
professional-This has happened 3 times so far, I try to make everything 
crystal clear for the parents in the beginning, put everything in writing, 
on my website, in person, in emails, but some terms are just 'ignored'.

Are there professionals that 'think they know best' or ignore parents 
input???  Yes, of course.  But I am not one of them, my life is dedicated to 
these children, I give them 100% of me, I have spent well over 30,000 euros 
on education, training and resources -for these kids-.  So, dont put me in 
the same category with other people who claim to be 'experts' and really 
don't give a hoot about the child.

And lets be realistic, parents are -people-, and no one is perfect.  Parents 
can make mistakes too.  I am just trying to figure out ways to handle these 
issues in a fair way so no one loses.

Because the level of care and respect I give to each and every child and 
each and every parent is superior, if you have a child with special needs 
you will want me to work with them.

Thank you



Kelly Lynn Redden

Coordinator

Specialized Autism Services

www.specializedautismservices.com

mobile 0655906824

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email are confidential to
the ordinary user of the email address to which it was addressed. No-one 
else may copy,
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