Autism Within Our Local Communitites

Statistics estimate that 1 in110
children in the United States have a form of autism, making it 10 times more
probable that a child will be diagnosed with it now than 10 years ago. One of
them could be your child. One of them was mine. Autism comes in many forms,
since it is a wide-spectrum disorder. Some children are severely affected by it
while others just struggle socially or have some sensory processing issues.
Some children have a duel diagnosis. My son’s autism results from another
genetic disorder called Fragile X Syndrome. Other children are on the autism
spectrum with no other explanation for it. There is a saying that goes “If
you’ve seen one child with autism, you’ve seen one child with autism,” because
they are all very different. Since my five-year-old son was diagnosed before
two years of age, I have found a lot of comfort in knowing other parents with
special needs kids and talking over our issues with them. It’s great to know
people who truly understand, because this is something that is nearly
impossible to understand if you haven’t personally experienced it in some way.
In getting to know these special families who came into our lives through
different avenues, I have witnessed the many differences between all of our
kids, and seen firsthand the challenges their disorder brings each one of them.
There are children, like mine, who are way past the typical speaking age and
have not yet been able to coherently verbalize a single word or request. Other
children can speak, but might only echo back words they have heard from a
favorite movie or song, never sharing with their families what is on their
minds. Some children have fine motor delays and it makes it hard for them to
complete simple tasks that others might take for granted. Writing and tying
shoes might be things that these children have to work for years on trying to
master. Many kids with autism have sensory processing disorders that make them
hypersensitive to their environment. They are easily distracted by sounds or
they can’t stand the feel of clothing on their bodies so they melt down. You
can imagine what it looks like when this happens in a store or other public
place. People who don’t know the whole story assume that they are witnessing a
child who is simply throwing a tantrum and the parent can’t get control of the
situation. And you can imagine how helpless this feels to the parent who is in
that situation and also having to deal with the weighted stares of judgment.
Temple Grandin, a professor at Colorado State University and one of the
nation’s most well known people with autism describes a trip to Walmart as
feeling like she is trapped inside the speakers at a rock concert. If you get
nothing else from reading this, please remember to assume nothing the next time
you see a child spiraling out of control at the store. You might be witnessing
a child with autism who has no control over regulating their feelings. My child
is on the opposite end of the sensory spectrum and rather than being bothered
by everything around him, he is UNDER sensitive. This means he does not feel everything
with the same intensity that we do, and he is always looking to gain some
sensory experience, be it visual, oral, or anywhere on his body. His behavior
would probably look strange to you as well. He feels he MUST touch everything
and drag his hands over every wall, or floor when possible. He constantly feels
the need to have something in his mouth and is obsessed with chewing and
ripping paper and cardboard. If he can not do any of these things, he vocalizes
very loudly. I’ve also gotten some of those stares and comments in public
because I have allowed him to destroy his own books while we shop as a
trade-off for him being a little quieter. When you have a child with autism,
you just do what you have to do. There is no cure for autism, but there is hope
for all of our children to overcome many of their challenges with the right
kind of therapy and other interventions, depending on the individual child’s
needs. Most of us quickly give up our previous “normal” so that we can have
time for the extensive schedule of therapy and doctor visits. Our main goal in
life becomes helping our special children live up to their full potential,
whatever that might be. Now that I have hopefully given everyone reading this
an understanding of what it is like to live with autism or raise an autistic
child, I want you to know that Discipleship Ministries is making an effort to
help. If it is on your heart, you can partner with the ministry in this
endeavor. There are lots of national organizations that accept donations for
autism research and financial aid, and that is a wonderful thing. What does not
yet exist is a place where local families can go for help if they need it.
Maybe their children require a special diet, which can be very expensive to
keep up with. Maybe the child would benefit from an iPad to help them
communicate or some other therapeutic items to help their sensory issues. Maybe
mom and dad just need to take a break to keep their strength going but they
can’t afford a sitter for an evening out. Our vision is to set up a fund for
local families, so that when they need something for their children and can not
come up with all the money themselves, they can apply for assistance and have
the cost covered for them through the ministry. As someone who has lived with
the needs and struggled with trying to buy what my son needs to make life
easier on him, I know how great a need this is for a lot of people. I know what
a blessing it could be in their lives to provide their children with what they
need because the goodness of God brought the resources together for them. We
want this to be one way of showing the families living with the disorders that
they are not alone. We will start a series of fundraisers this winter that you
can look out for and if you would like to come to a concert or other event in
support of these children, we would be very happy to have you join us. Other
donations can be sent to Discipleship Ministries at 314 Nelson Rd. Farmington,
Pa. 15437. Financial contributions are appreciated, but certainly not the only
way to help. Your prayers make all the difference to families. From my own
experience I know how powerful that is. You can also help but gathering more
information for yourself if you are blessed with the presence of a child with
autism in your life. Nothing will bless that child and their family more than
your understanding and kindness. A smile and a kind word can have an impact
more lasting than you know.

Blessings to all of you.

Jenny Susa