Poster
Child
For the
past decade I have been under the impression that there is such thing as a “perfect”
special needs child. You know that perfectly cute, exceedingly happy child that
lights up the room when they enter – the “poster child” for their disability?
My child most certainly is NOT that child.
Over the
years I would meet the parents of these poster children and I would be flooded
with emotion – jealousy, sadness and mostly embarrassment. My embarrassment
surrounding my imperfectly disabled child stayed with me for a while. I was uncomfortable
when others met her; unsure what would come out of her mouth. I was ashamed to
bring her to the neurosurgeon, knowing that she would draw on the little models
of brains and be disrespectful of him. I felt like I was less of a mother
because my child would never be asked to
have her picture plastered on a Children’s Hospital elevator. My daughter was
NOT that child.
As if
dealing with an imperfectly imperfect child with a whole host of medical issues
(hydrocephalus, cerebral palsy, vision issues, seizures, etc.) wasn’t enough my
daughter also suffers from mental illness.
For those of you who have not experienced mental illness, it is not
pretty. It is unpredictable, hard to
manage, and sometimes ugly. It can make
others not want to be around your child.
It can elicit rude remarks from strangers and family members alike. Mental illness is not fun. I have worked very
hard in my community and my career to rid people of the stigma that surrounds
mental illness. I talk about my daughter’s
mental illness freely, in hopes that it will allow other parents feel less
burdened by their children’s mental illness.
Even with all this openness, my daughters imperfect imperfectness
bothered me.
Recently,
I had a revelation: my daughter’s imperfections are what make her who she is, and
I’m okay with that. I am okay with my daughter not being the poster child for
Hydrocephalus or Depression. I am okay that
doctors don’t immediately think of her when they want to speak about a
case. I am even okay that occasionally
other special needs parents feel bad for me because not only does my kid have
medical issues – she is also depressed, and
moody, and anxious!.
Although
life can sometimes be extremely difficult, I don’t feel bad for myself. I am content that my child is different - even
in the world of special needs. I am
resilient. She is resilient. I don’t need a poster child. I am content with my child being who she is.
It is difficult
for parents of special needs children to live in a world where their children
are constantly compared to typical children.
Why do we have to make ourselves feel even worse by comparing our child
to other special needs children? The
answer is easy, we don’t. Love your
children for who they are. Relish the differences they have to the typical and
special needs world alike. Is this easy? Heck no! Do the best you can, because
seriously – do you need one more thing to worry about? I know I don’t!
