The Moment I Knew My Husband and I Would Make It Through the Diagnosis
Eleven years ago my husband Jeff and I made our official debut into the world of autism.
Our then 18-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 because he was young and he was affectionate with his parents.
As the visit concluded she recommended we take him to one of the two medical centers nearby when he turned 2.
We hunkered down for six months and did 30 hours a week of 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. When it came time to take him to the nearby hospital, we thought we’d get the official diagnosis we’d eventually need for a preschool program, and that would be that.
We could not have been more wrong.
Everything ran fairly smoothly until we had a lengthy wait for the examination by their developmental pediatrician, who I’ll call 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, but finally she finished. I then made the mistake of asking her if there were any tests that would help determine the cause of Justin’s intermittent reflux, diarrhea and constipation. She replied in the negative and then brightened considerably. This incredibly taciturn doctor actually looked like she was headed for a spa day. Beaming, she let us know there were no tests to be conducted on these issues but Justin should definitely get a 24 hour EEG.
I asked if there were any studies out there showing this test could actually produce results that would help autistic kids. She excitedly told us her colleague (we’ll call him 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 Justin wouldn’t even let us get one damn electrode on his little head.
I reiterated my question about how this could possibly help my son, and looking deeply offended, the developmental pediatrician responded that we would be helping science, implying how could we ask for anything more?
Jeff and I locked eyes, and I saw his expression of exasperation, fatigue and a little 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 19 years on Monday. While our journey with autism has certainly had its share of bumps along the road, we’ve weathered them all together. We learned for our marriage to thrive, and not just survive, we have 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.
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. I believe that’s the glue that kept us together the last 12 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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