The Stages of Diagnosis

When I first learned of my son’s diagnosis I went through the classic stages of grief:  denial; anger; quick fixes, depression; and, acceptance. He wasn’t quite 3 years old and wasn’t talking, not even pointing. I jumped through the usual hoops, hearing and vision check as well as being assessed by the psychologist.

 I was relieved to get the diagnosis of PDD-NOS (pervasive developmental disorder no other symptoms) because it did not mean Autism, that’s good right? Fast forward a couple of years and I was happy a developmental pediatrician gave him the diagnosis of the Big A and ADHD so he could qualify for more services. Each time I went through the stages I listed above. The crushing sadness and anxiety. The jealously of my friends with typically developing kids. The anger at the unfairness. I did indulge in some denial, I was told my husband’s uncle didn’t talk until he was 4 years old and he is now a physician, that’s good right? I never indulged in quick fixes but I sure get to hear all about them from friends, family and strangers on the street. I hate Jenny McCarthy.

The same month Jay was diagnosed with PDD-NOS my oldest was diagnosed with ADHD and sensory processing disorder so that was a rough month. But Mitch's diagnosis was not as much of a surprise or as frightening as Jay's. 

What you don’t realize at first is that you and your spouse are not the only ones who go through the stages of grief. Close relatives like Aunts, Uncles and Grandparents and even your friends have to acclimate to a new you a “new” kid. From family I got a big dose of denial. “Oh it’s just because he is the youngest of 3 and everyone talks for him.”, “It’s because you are a stay-at-home-mom.” “But he’s high functioning Autism right?” “Will he live with you forever?” “You need to treat him exactly like your other kids so he will grow up normal.”

I was deeply moved that my Mom and Dad (who are not married to each other anymore) both took it upon themselves to get educated about Autism. And now that my family members have moved into the acceptance phase, they are not afraid of Jay and they greet him, but know when to give him space. As Jay hits his milestones, whatever that will look like, I hope they continue to accept him.

Jay is only 5 so we have a long journey ahead of us and I’m keeping an open mind as much as I can. Recently he is going through some transitions with his teachers switching around. Most children with Autism can be quiet rigid with their routines and Jay is no exception. This behavior is starting to spill over into his home life. Yesterday Jay wanted my husband’s iPad all to himself so he locked himself in my room and then refused to unlock the door and refused to talk. I had a friend visiting who in an attempt to help me stuck something in the lock to pick it but the tool (a small kid’s paintbrush) broke inside the lock and got stuck. We tried a crowbar and then kicking the door but to no avail and 30 minutes had passed. I was forced to call the police and then very good looking police officer also tried to talk to Jay.  Jay told him no he was not unlocking the door, so the officer with my permission, kicked the door open. It only took him one try. Now if it had been my other two kids I would have stormed through the now open door and chewed them out! But since Jay has Autism, and is going through some transitions right now, I calmed down and comforted him. He was crying and his heart was beating through his chest. I’m pretty sure he’s cured from doing that again and he did lose privileges on the iPad for the entire weekend.

The point of this anecdote is that even though Jay is different, my love for him is the same as my love for my other two kids. But Jay is different and I’ve grown to accept that.