Saturday, August 8, 2009

How Do You Do It (with a smile)? Entry 2

Today's guest post is from Lydia who writes Autistic Speaks. She is a brave and articulate young woman who writes honestly about her experience. I gain huge perspective on my son's reality by reading Lydia's blog. Very often, she puts words to the sensory issues for which he seems to only have behavior. Her explanations catch me in my tracks just before I run out of compassion.

Ironically, the tiger on her banner looks just like another one in the Brookfield Zoo. I have a snapshot (somewhere, pre-digital) of Reid at age 3 busting a gut in front of the glass enclosing "Shere Kahn." How do you explain that sense of humor, Lydia?

I have never raised a child with special needs; I have never even
raised a child. I have, however, spent every day of the past 21 years
affected by autism- not in a sibling, a friend, or even a parent- but in
myself. It must take an unending supply of understanding, patience, and
hope to live with and to love a child with special needs. If it weren't for
being understanding, patient, and hopeful, and if those who love me weren't
the same, then autism would get the better of me.

First, I have come to understand what autism means and how it
affects me. I now know that autism is a neurological condition. Thus,
perceptive differences occur at the most basic biological level; autism is
not psychological nor is it something that I have chosen. I have to accept
that the way I learn about the world around me is different. I can not
control whether or not I have autism, however, I can control the smaller
pieces of the puzzle, such as whether I allow my frustration to build or try
to find my words and say, "I feel frustrated."

Second, I am learning to be
patient with my differences. When I go on vacation, my packing list includes sensory toys, a chewy tube, cat pictures, ear plugs, and wrist
weights; all things that most young adults do not even consider in their
daily lives. I want to be "normal," like most 21 year olds; whatever that
entails, because I must admit, I do not know. Whatever it is, I would take
it. But I am trying to learn to be patient and accept myself, autism, ear
plugs, and all.

Finally, I will never give up hope for the future. I don't

expect the future to be, in any way, "autism free," but I hope that I will
continue to learn about autism as my family, friends, and medical
professionals do. I hope that, over time, life becomes easier both for
those with autism and for those who are in any way affected by it. I hope
that, no matter what turns my life takes, autism will never hold my back
from being happy.

The next time you see a family member struggling with a small child,
please put yourself in that parent's place. Others frequently remind me to
be understanding, patient, and hopeful with myself and my own behavior when
it is trying. So, the next time you see a teenager or young adult with
autism acting out while in public, please try to realize how much effort
that person is exerting to hold it together. Try to understand how hard it
is in that moment; try to be patient with the current challenging behavior;
and always be hopeful that the future holds something brighter.

- Lydia


  1. Words to hold on to. Thank you, Lydia. Yu make me want to be better, more patient.

    I watched Carly Fleischmann on 20/20 on Friday. She expressed many of Lydia's sentiments.

  2. Be more patient! That is the message I want to send to every human being out there. I am often in public with my son who has AS, his two best friends who also have AS and my nephew with classic Autism. I am shocked sometimes at how rude adults can treat them because the act even slightly differant. Be patient these kids are trying harder than you know.

    On another unrelated note, I finally have the tye die shirts finished. I had a hard time finding 5 people to give them to. They are now completed and waiting to be mailed, it should be sometime next week.

    Was it your son's baptisim I seen on Jeneil's blog? I wondered.