The Unexpected Journey

by Terri

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.

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. 

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.

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.

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!