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The day I found out I wasn't crazy
Jonathan was three and a half when I finally found someone who'd listen to my concerns about him. At the time my husband was still active duty military, which meant that our entire family was seen at the local military clinic. I was at an appointment for my primary doctor explaining my concern the state of Maryland was moving to all day kindergarten the year Jonathan would start school. I knew Jonathan wasn't going to survive all day kindergarten without some kind of preschool program prior. However, because he was refusing to be potty trained, no preschool would take him. I was in a Catch 22.
My doctor asked me a couple questions about Jonathan's development and asked him to draw a stick figure on the sanitary paper pulled over the patient examination table. Her response was to refer us to Walter Reed Army Hospital, the place where the military's specialists resided. When I was looking over Jonathan's medical records some years later, I realized even then this doctor suspected Jonathan had Asperger's Syndrome, a form of autism. Her referral simply requested that the team of specialists in child development "confirm or rule out Asperger’s Syndrome."
I called the child development team requesting to be placed on the three month waiting list. While we were waiting for the opportunity for an appointment, the team sent us some paperwork to complete and return. I realized now this completed paperwork allowed the team to know which specialists we needed to see when our names made it to the top of the waiting list.
I'll never forget the reassurance I received just by answering all the questions in a package of paperwork sent to our house. For three and a half years, I tried to explain to friends and family Jonathan’s overreaction to any kind of personal hygiene. The response I usually heard was, "Oh, my son did that when he was younger." I learned to bite my tongue knowing they were just trying to encourage me or keep me from worrying unnecessarily. But inside, I wanted to scream, "I have an older child! I'm the oldest of three brothers! I've babysat children for two decades! I think I'm somewhat qualified to say Jonathan is not acting like a typical child his age!"
Some of the questions on in the packet spoke to what I was observing:
• "Does the child overreact to taking a bath, having hair brushed, having nails cut?"
• "Does the child complain that personal hygiene habits 'hurt' or feel 'uncomfortable?'"
• "Does the child spin around in circles and not get dizzy?"
• "Is the child a picky eater? Can you list the foods the child will eat? Can you list the foods the child will not eat?"
• "Is the child verbal?"
• "Did the child begin talking "late?"
• "Does the child become unusually fixated on a subject or object?"
For the first time, I thought, maybe I'm not as crazy as everyone seems to think I am. Of course the paperwork didn't give any answers. It only asked questions. But at least it asked questions in keeping with my observations. We'd have to wait for the appointments with the specialists to find the answers.
I think we saw the psychologist first. Scott took the day off work. My parents kept our older son, Joshua, who was about 10 at the time, and our younger daughter, Faith, who was about 18 months at the time. We put Jonathan in the back of the minivan and hooked him up to a DVD of the Veggie Tales. Then we set out for a two hour drive through the nightmarish traffic of the Washington, D.C. beltway traffic in the morning rush hour.
I don't remember much about the actual doctor's visit. I know that it was a small cramped office. Scott, the lovely young female military doctor and I all sat in rolling chairs and our knees almost met one another's in the center. Jonathan was busily and quietly playing with toys on the floor. He would not respond to the doctor's questions or attempts to make conversation with him. As she talked to us and asked us questions, she balanced files and paperwork on her lap, which she'd occasionally shuffle through.
The last few minutes of the meeting is what I remember most because it determine the rest of our lives.
She said, "Your son has Asperger's Syndrome. Did you ever see the movie 'Rainman?' Well, the diagnostic scale for Asperger's Syndrome is one step below what Dustin Hoffman's character had. It's on the autism spectrum. The reason why it is called an autism spectrum is that people on it can be very low functioning or very high functioning and anywhere in between. The low functioning end is where a person is non-verbal, may flap their hands and bang their heads and need a lot of support. This is usually what people think of when they think of autism. Jonathan is at the high end. This explains why he is advanced compared to his peers when it comes to early reading skills, math skills and awareness of concepts beyond peers at his age. It also explains why he's behind his peers in other areas of development such as potty training, talking, personal hygiene, etc."
At some point in this part of the conversation, I must have made a joke, but I don't recall what I said. I just remember the doctor's response, "I'm really surprised by how well you're taking this. I don't usually have parents who react this well to the news that their child has been placed on the autism spectrum. A good sense of humor will go a long way in how you raise Jonathan."
The meeting ended with her giving us resources and telling us where to go next. She also advised us to stay off the Internet and be careful of which support groups we join. She suggested that not all material on the Internet about autism is scientifically researched and not all support groups encourage parents and families to move forward in positive directions.
Scott and I took Jonathan to McDonald's for his chicken nuggets, which was his reward for coming to the doctor's appointment without his usual meltdown. (He doesn't like to drive distances in cars. And he doesn't like doctor's appointments.) I think over lunch was when the doctor's words started setting in.
Scott asked me what I was thinking and feeling. I told him I was both relieved and sad. I was glad I had a name for what was going on with Jonathan. Since I'm a reader and researcher by nature, I could start investigating and begin understanding how to raise Jonathan. But I was sad and scared because I didn't know what the future held.
"I can't get over how the doctor can't get over how we responded. Why do you think we responded differently than others?" I asked Scott.
Starting at McDonald’s and on our two hour drive home, we talked about our belief in the sovereignty of God. If He gave us Jonathan, then He's also given us everything we need to raise him. We also have hope that the same God who fearfully and wonderfully made us, like it says in Psalms 139, also fearfully and wonderfully made Jonathan. And He has a plan for Jonathan. Just like He has a plan for us.
That same week, Scott printed out Psalm 139 and pasted a collage of pictures of Jonathan around the Psalm. Then Scott displayed his creation in on his desk at work as a reminder that God doesn't make mistakes.
