Conferences, Special Camps, Respite Needs
Summer, Ah Sweet Sweet Summer
The first day of summer holidays, knowing you have the maximum number of days
until school starts, stretching out in bed, and watching a new puppy or kitten,
or baby goose. It is all new together.
But as the trend setter I am, I have decided that there will be no summer
holidays this year, no spare time, no lazing about, there will be speech
schedules, chores and children tied in car seats racing from one opportunity to
another. Is She nuts?
Conferences are Vital.
This is the T shirt which I made to go to a conference on Huntington Disease
last week. This easily introduces me as I wear glasses and hearing aids, and I
am very interested in aquatics for movement disorders which I take every week.
My name and monikers are underlined so people know I am on-line.
If there is a group of other people interested in hard of hearing children
around, summer is a better time to try and spend time together. Everyone
benefits. Failing that, you should try to get to a big conference like
A.G.Bell's several times in your life.
This will be the first A.G.Bell conference in a very long time that Dr. Ling
will not be at. Many people like my friend Carolyn Knox had the opportunity for
her son to meet Dr. L:ing, and to ask questions, and be told by Dr. Ling as
parents they were doing a fine job. I am sure those moments will be remembered
forever.
Reid did Loft through A.G.Bell in Philly in 2000, which was a wonderful
opportunity. Now that he has a driver's license, we tried to drive to San Diego,
but it is too far and expensive. The Canadian dollar melts in the US, and very
few parents can afford hotels etc. If I ever planned a conference it would be in
the cheaper hotels surrounded by all the cheap restaurants. Paula Rosenthall
from the Hearing Exchange will be speaking at the A.G.Bell conference. I hope
you all will go and listen to Paula speak.
A.G.Bell published my book which was the first book in the world about hard
of hearing children. In 1998 I wrote a proposal to speak on the Application of
the UN Charter of Rights for Children with special needs, and how it had yet to
apply to the hoh kids in the cracks. Being rejected by your own publisher really
sucks.
Thank you Liz Quigley
for all your work for A.G.Bell.
I was at the Utah convention for my book launch for which Liz Quigley did so
much work. In 2000 in Philly, A.G.Bell thanked someone else , not Liz. Liz wore
5 hats at A.G.Bell from publications to conferences, to editing. With all this
work to do, at a time when not everyone had computers, she worked long and hard
and selflessly. and just in case nobody else says anything about the work Liz
did for A.G.Bell, Thank you Liz.
Special Camps
Some kids never know there are loons on a still lake until they get to camp.
One of my sons worked at a camp for children who needed one-on-one care.
Whenever we dropped in, I was surprised and warmed by the smiles with which
these delicate kids were surrounded. The counsellors would have to work as a
group to provide trampoline time for each child, what an experience for a child
who spent his/her life in a wheelchair. The surprise and joy on the bouncing
child's face was wonderful.
Many of the staff at this camp were local teenagers who went to the local
high school. I felt that the camp did not provide adequate witnesses at
"Diapering time." The first issue was the privacy of the client, so the camp
provided privacy by diapering being done by the counsellor in the cabin. I
worried that at some unknown point in the future my son would be accused of
abuse, and he would not have a leg to stand on because he was always alone, as
were all the counsellors. As the parent of a special needs child myself, I
thought the disabled children were also being put at risk of abuse by this
privacy issue.
Respite Needs for Caretakers
Part of the purpose of this camp is to provide desperately needed respite for
the child's caretakers. As I grow older I realize how respite from Reid might
have enabled me to spend more time with his siblings. I dealt with my need for
respite by trying to forget the hearing loss and just have a great time anyway
with all the kids. And I felt guilty as a special mom for wanting my own time.
On the other hand, I got through a lot of necessary substepping for language
when school was not wasting Reid's and my energies. Reid's language was never
from a book, so summertime provided us with lots of time to go places and do
things. If he had been at camp, there would have less money for the other things
we did.
Look Mom that kid has hearing aids! Look Mom or Dad, that kid with hearing
aids has parents!
Getting together with other children and people who walk in exactly the same
shoes you do is one of the newer things around. My parents' generation hid the
special needs children in the barns, the insitutions and in family secrets.
Meet famous ones before they get there.
I rarely saw another child with hearing aids, except at the Voice for
Hearing-Impaired Children conferences, or the AVI conferences , or the A.G.Bell
conferences. Yet I met Dale Atkins and Carol Flexer at conferences. Flexer is
the original academic who works with hard of hearing children, mild losses,
minimal losses. She is the first to write down the hearing needs of everyone,
not just severe and profound losses. My book written as a parent falls against
Flexer's work for the hard of hearing, and of course, Dr. Ling's books which
were seminal, but aimed at hearing impaired and deaf children. I modified the
Ling method for Reid. All the others are secondary. Flexer and I were first. So
it takes a certain amount of graciousness for me to say "Go and listen to Paula
Rosenthall speak on the hard of hearing child at the A.G.Bell conference,
because it should be me."
Dontfogettotakethehearingaidsoutbeforejumpinginthelake.
-PAM Candlish
June 1, 2004
