by Terri
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| Christian and me in 2009. |
When our first grandchild was born, we were understandably ecstatic! He was healthy and perfect and so we had no idea what was in store for him and for us all in the future. He met all the milestones – smiled, laughed, and interacted right on schedule – so we had no warning signs, at least for a while.
The initial
concern was that he wasn’t talking as much as he should be for his age and
there were other things that were concerning like not playing with toys in the
usual way (lining up cars rather than zooming them around on the floor). There
were a very limited number of foods that he would eat. Changes in routine were
upsetting to him. These things and others led doctors to do testing and
Christian was eventually diagnosed with an ASD (Autism Spectrum Disorder),
specifically PDD-NOS (Pervasive Developmental Disorder Not Otherwise
Specified). I was like a lot of people and assumed all kids with autism were
non-communicative and non-interactive. Christian was happy, smiling and loving,
and to us this meant the autism diagnosis had to be wrong.
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| Ages 9 months, five and seven. |
However, after much research, we found out that ASDs range from mildly to profoundly disabling and that PDD-NOS is usually on the milder side. PDD-NOS is characterized by delays in the development of socialization and communication skills. These may include delays in using and understanding language, difficulty relating to people, unusual play with toys and other objects, and difficulty with changes in routine or surroundings.
With this
diagnosis, he began receiving speech and occupational therapy at a local
hospital and was later tested by the school district for inclusion in their
special needs preschool which he began attending at age 4. He went from there
to the elementary school, middle school and high school and we all learned as
we went along. Being the one to help with homework every day, I had to learn
the best ways to teach him. Being able to picture things helped him to
understand them so my drawing skills (not much to speak of!) were tested.
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| First day of second grade. |
As he moved
from grade to grade, he was put into more mainstream classes. His challenge
remained (and still remains) reading comprehension. Since reading is such a big
part of all subjects in school, we worked extra hard to increase his vocabulary
and comprehension.
Autism
statistics from the U.S. Centers for Disease Control and Prevention (CDC)
identify around 1 in 68 American children as on the autism spectrum – a
ten-fold increase in prevalence in 40 years. Careful research shows that this
increase is only partly explained by improved diagnosis and awareness. Studies
also show that autism is four to five times more common among boys than girls.
An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in
the United States. Autism appears to have its roots in very early brain
development. However, the most obvious signs of autism and symptoms of autism
tend to emerge between 2 and 3 years of age.
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| Christian at age 6. |
But enough
facts. If you want to know more about
autism, there are plenty of resources out there. I’m here to talk about the
feelings, how the feelings of joy are somewhat dimmed by the worry when you
receive the diagnosis. But receiving the
diagnosis meant he would qualify for services from admission to the special
needs preschool program in our school district to speech and occupational
therapies. And watching him gain new
skills and become more social was so rewarding. And we all learned along the
way. Although struggling with reading comprehension
and vocabulary, he has an amazing memory which has helped him overcome these
challenges. Like any typical boy, he loves sports, especially basketball. He has played in a community basketball
league since he was seven and knows all the players on every NBA team. He’s
warm and funny and loving.
I am
thinking about all of this today as he finished his freshman year in high
school last week. He has been in almost all
mainstream classes this year with only a few accommodations given to him in his
IEP (individual education plan) and finished with all A’s and B’s. I am so proud of him and how hard he has
worked to get where he is today.
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| First day of Freshman year -- age 14. |
I’m sure you’ve
all heard the story called “Welcome to Holland” by Emily Perl Kingsley about
raising a child with a disability. She likens it to planning a trip to Italy
and ending up in Holland. “It’s not what you planned but if you spend
your life mourning that you didn’t get to Italy, you may never be free to enjoy
the special and very lovely things about Holland.”
Although this journey
has not been what we planned or expected, it has been wonderful! We are very blessed to have this sweet boy in our lives and that he is doing so well. He will
turn 15 next week and we couldn’t be prouder!
