The online support group for special needs parents and caregiver was held recently. It was nice to meet some new people and catch up with returning participates.
We
continued our discussion from last month about adult service. It is
obvious that there is more discussion needed about services
after high school for many of our online special needs parents. There
was valuable information shared among the group about many issues. We
hope to continue the dialogue at a later time.
Marie's Story
The
online support group listen to Marie's heartfelt story about her
middle son Griffin who is 12 years old. Griffin has been diagnosed
with a partial deletion of the NRXN-1 gene, which is the cause for
his autistic behavior. He is nonverbal. Although he communicates
differently it hasn’t stopped the instant attraction that everyone
has to his sweet and magnetic personality when they first meet him.
This allure has followed him to his school. Griffin is currently
living in a residential school where he is learning new tools to
become more independent. Marie shared their challenges and how they
made the decision to move Griffin into a residential home.
We
could tell that after several years of Griffin living away from his
family that his absence in their everyday lives has left a sadness
that looms over their home. It is also apparent that after 4
years of applied behavior therapy Griffin has made significantly
positive changes in his life and that makes it all worth it.
I
am sure the support group would agree that we would love to have
Marie continue her discussion with us about Griffin and his progress.
Another
topic discussed was the support for the April 4th vote for the
Mental Health Board for Knox county. This is an important
vote for the special needs community to ensure that existing services
are continued. The yes vote will also help fill the gaps
for unmet needs such as respite care. I know first hand how
respite can be a lifesaver. If it wasn’t for respite services I
never would of had a break when my daughter was little because of the
amount of special care she needed.
On
a personal note-
Sometimes
in the busy world we don’t take the time to recognize the
important work that agencies do for the special needs population. It
is easy to criticize or complain when things do not go according to
our plan.
As
a special needs parent, I had grown accustomed to fighting for
the best services for my daughter. When Meghann
graduated from high school I had no idea how everything was going to
work. I had developed all of these great relationships with the
professional people in Meghann’s world. I was scared that I had to
start all over figuring out who and what everyone did in Meghann’s
new life as an adult. I always thought that it took unique people to
work in the specialized field of differently abled children.Today I
am finding out that those unique people are carried over to the adult
special needs community. I want to give a big THANK YOU to all
of the people who work and continue to fight for services for
differently abled people. Without all of you we wouldn’t have the
opportunity to vote YES to support the mental health board for Knox
county. Please remember the important services that agencies such as
Abilities Plus, Gateway and KCCDD (KCCDD is in Galesburg and is
the workshop Meghann attends every day) provide for so many
people.
The
next online support group meeting will be held on Tuesday April 4th.
I will be posting information about the April meeting soon.
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