Arise, Inc. Oswego County Edition
A Parent’s Experience
Having a child with developmental disabilities isn’t something that anybody plans on, yet each
year thousands of people are faced with just that. They are thrown into something that they are
unprepared for, and it can leave families feeling secluded and worried about the uncertainty of their
future. Fourteen years ago I found myself among those who have struggled to come to terms with
exactly what this label would mean to them.
For me, denial was my first reaction when I was told that my daughter had disabilities. As much as I didn’t wan
t to face the reality, watching her lack of progress forced me to move beyond my image of what I wanted life to be
like for her. As a parent, you feel responsible for teaching your child what they need to know in life, but when your
child fails to achieve these milestones, you take it personally and wonder what you did wrong. I’ve learned that the
answer to that question is simple… nothing. We as parents need to step back and instead of thinking, “why did I
fail my child,” we need to think, “how can I better help my child.” This may mean accepting help from outside of the
family unit, which for me was the hardest part. I secretly hated that my world now revolved around a constant
schedule of therapists and doctor appointments. It was overwhelming, and I knew of nobody else that could even
remotely relate to my situation.
Learning how to care for a child with special needs was a very unique process. There is no
literature out there that tells you what will work for your child, so I made it up as I went along. If
something worked, I went with it no matter how unconventional it was. You learn how to get creative
when your child is afraid of the most simple things in life such as food, soap or even Play-Doh. This is
when I really started to value the expertise of my daughter’s therapists. It was hard work, but the
lessons that she learned were invaluable and I quickly realized that she may not have survived without
Eventually, I got involved with some of the wonderful programs in Oswego County such as
ARISE and Parents of Special Children, which connected me with other families in similar situations.
I began to see that we were not so different than what I had thought years ago. I got to know a lot of
very nice people who all wanted the same thing in this world: more acceptance from society.
Knowing that I am my daughter’s best friend is very hard on me. She has been lucky enough
where people generally are nice to her, but that is as far as it goes. There are no birthday party invites,
no sleepovers, no hanging out with her friends. Her world consists solely of what I create for her.
Socialization is probably one of the hardest concepts that developmentally disabled children face.
They may not know how to carry on a conversation or play in the typical way as other kids do, but
they do know when they are being singled out or being made fun of.
Being the parent or caregiver of a person with a disability is no doubt the toughest and most
rewarding job that anybody can have. It takes a lot of hard work, patience and dedication, but the
rewards that you get in return are priceless. These children are among the most loving, innocent and
sweetest people that has ever graced this Earth. They love unconditionally and ask for almost nothing
in return, and I am grateful that I was one of the chosen ones to have a special needs child in my life.