No Grieving in This Autism House
I was reading articles online and came across a piece written by Susan Walton, regarding Autism in the family and the grieving process. In short, it is a rallying cry to view a child’s diagnosis in a more positive light, rather than an occasion to grieve. Personally, I agree.
I remember the time leading up to James’ diagnosis as a haze of anxiety (something wasn’t right), stress (job and family worries), and extreme frustration. I’d been worrying why I hadn’t seen the big developmental jump at 18 months that I had with his sister; he still was not talking; he was beginning to scream instead, and even bite. His daycare, while concerning me about an overall lack of safety, did step up and tell me that his behaviour matched some of the Red Flags of Autism and that we should have him checked. His pediatrician then actually told me that James could not be autistic. “He can’t be, he looks you in the eye,” he insisted. True story. I had to insist that he call in a referral. Parents — you can insist. Please don’t hesitate to do it to help your kids.
So to hear from the Regional Center caseworker that there were indeed some developmental delays was not completely unexpected; it was kind of the bad news I’d been waiting to hear. I immediately requested and took 6 months of Family Medical Leave and plunged into HR hell with my employer’s payroll department. Our family life was in limbo while we ferried James to five therapy sessions and a social playgroup weekly, waited five months to get get into the CAD Clinic for an official diagnosis of: Autistic Spectrum Disorder.
My husband and I were stunned. along with the rest of our family. Now what? What does that mean? Will our son ever talk? Will we ever feel the connection to who he is? How do we make sure he gets the help he needs to develop? These were some of the questions whirling in my head. Then I got a letter from our preschool, notifying me that, per paperwork submitted when big sister transitioned out, a place had been saved for James and they were looking forward to having him start in January, after his 3rd birthday.
By this time I knew James would not benefit from this program, even though we loved the staff and it was THE preschool where most parents wanted to send their kids. I had to call them back and explain that James would not be coming. And why. Also, that’s he’d be instead attending the Special Needs Preschool through the public schools system.
The staff was wonderfully sympathetic. Almost too much. Several advised me to grieve for “the death of a dream.” That’s when I pulled up, so to speak, and thought more clearly. Wait a minute. Why should I be grieving? At least I knew what we were dealing with now. And from reading about the range of impairments that could happen, I knew that James was lucky because he was healthy and liked people. He did not have to take any meds. There was a lot to be happy about, it seemed.
Since then, I have heard the advice and questions about grief relating to life with Autism. I still don’t get why I should be grieving. We have our son. He is healthy and making progress, not suffering from something terminal. We have our moments of disappointment, semi-despair, and frustration … but we have even more times of love, fun, and adventure.
Normal does not guarantee a happy life. Since we started on this journey, I have learned a lot about wanting what I have. One of the biggest gifts is appreciating how happy our sunny James is. I cannot count the times he’s put a smile on my face with his sweet and mischievous ways. We celebrate major breakthroughs that may look like simple things and it carries over into our overall accomplishments as a family. So, no grieving over that diagnosis in this Autism house.