May 18, 2015
Eleven years ago this fall my husband Jeff and I made our official debut into the world of autism, when our then eighteen-month-old son Justin was given the diagnosis of PDD-NOS by a lovely and very caring developmental pediatrician. At the time she didn’t want to give him an official autism diagnosis both because he was so young, and because he was so affectionate with his parents. As the visit concluded she recommended that we have him seen by either Georgetown hospital or Kennedy Krieger Institute when he turned two, and since Georgetown was closer, we went in that direction. We hunkered down for six months and did thirty hours a week of ABA therapy ourselves (at the time Virginia’s Early Intervention system didn’t recognize an autism diagnosis,) and waited for the big day we’d finally get the “A” word. We figured since it was “elite” Georgetown Hospital things would go fairly smoothly; we’d get the official diagnosis we’d eventually need for a pre-school handicapped program, and that would be that.
We could not have been more wrong.
Everything ran fairly smoothly at the hospital until we had a lengthy wait for the examination by their developmental pediatrician Dr. L (my theory is your wait-time for a member of the medical profession is directly proportionate to how important they feel you should think they are.) Justin let his displeasure be known throughout the entire physical exam (I often wondered if the physician or the two-year-old would prevail,) but finally she finished. I then made the mistake of asking her if there were any tests that would help determine the causes of Justin’s intermittent reflux, diarrhea and constipation, and she replied in the negative, then brightened considerably. This incredibly taciturn doctor actually looked like she was headed for a spa day.
Beaming, she let us know that there were no tests to be conducted on these issues, but that Justin should definitely get a twenty-four hour EEG. When I asked if there were any studies out there that showed this test could actually produce results that would help autistic kids, she excitedly told us that her colleague Dr. Z was performing a study on overnight EEGs, and if we were lucky there would still be room for Justin to participate. She then pointed out the pictures lining the walls of the room that showed a number of children with intimidating head gear. All of them were smiling, looking at the camera, and were peacefully wearing what looked like an alien football helmet strapped to their skulls.
I sensed with Justin we wouldn’t even get one damn electrode on his little head.
I reiterated my question about how this could possibly help my son, and looking deeply offended, our developmental pediatrician of the day responded that we would be helping science, implying how could we ask for anything more? Jeff and I locked eyes, and I saw that his expression of exasperation, fatigue, and a slight dose of hilarity mirrored mine. That was the moment I knew my husband and I would make it. We were a team. We were in this together.
And we both thought Dr. L was full of crap.
We’ll be married nineteen years this month, and while our journey with autism has certainly had its share of bumps along the road, we’ve weathered them all together. We learned that for our marriage to thrive and not just survive, we had to take time for ourselves individually. We learned we had to carve out time together without our kids, even though it’s stressful to make those occasions happen. We’ve learned how to cover for each other when one parent has had enough, and we’ve learned how to ask for outside help, which wasn’t easy for us. Finally, we’ve learned how to find the humor in almost any situation with our kids, which I believe is the glue that’s actually kept us together the last twelve years.
We learned how to take a deep breath and rely on each other. He’s my partner and my friend, and I wouldn’t want to walk this road with anyone else.
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