When our son, Z, was 13 months old, we took him to the pediatrician. We were concerned that he had only learned a couple of words, never pointed to items of interest, and failed to look at things pointed out to him. The doctor replied that we should return when Z was 18 months old, to give him a chance to learn more language.
Time passed, and there was no progress. Z stopped using the few words he knew. By 17 months, we were convinced that something was terribly wrong, and we returned to the doctor and told him we could wait no longer. He referred us to Hitpatchut HaYeled (Child Development), where a pediatric neurologist informed us that our son has a communication problem and referred us to further testing at another Hitpatchut HaYeled branch.
After our meeting with the neurologist, we came home and looked up “communication problems” online. And as we read the description of autism, our world turned upside down. The kid described online — that was our kid. Now I think of that time as the beginning of mourning period number one.
A month later, the pediatric neurologist at the new “Hitpatchut HaYeled” informed us that our child likely had autism, confirming our fears. This was the start of mourning period number two. A month after that, we had a final diagnosis: Autistic Disorder. So started mourning period number threee.
Why all these mourning periods? Sure, it’s sad when your child is diagnosed with an incurable lifelong disability, but mourning? No one died, right?
Wrong. Someone did die: The kid we thought we had. He is gone forever. The kid who we thought would run around with friends at the park, attend our older kids’ school, go to summer camp, participate in school plays . . . He’s gone.
Yes, he was an imaginary child who never existed other than in our minds, but we believed in him and loved him, and upon his departure we mourned him.
And so, mourning, we started our hectic new lives. We continued working, parenting, running a household, and meeting our responsibilities to extended family and friends, while going to a never-ending series of follow-up tests and appointments. We traversed the red tape of Bituach Leumi (Social Security), the tax authorities, the municipality, and the Welfare Ministry. We had a team of five therapists start a therapy program in our home, 30 hours a week.
It was particularly difficult to hear therapists praising Z’s progress, when the skills he’d learned were basic things that any regular kid could do. We were expected to celebrate Z’s ability to hand someone a spoon when asked to do so. Certainly the kid we thought we had could have done that.
We continued mourning for around a year. But something happened as time wore on. We let go of the kid we thought we had, and we gradually came to know the kid we actually do have — and discovered how wonderful and special and precious he is.
We celebrate each new skill he acquires, each step he makes towards independence and success, without comparing his achievements to those that our thought-we-had kid would have accomplished in the blink of a nonexistent eye.
I think most parents discover at some point that their kid is not the person that they had fantasized — a famous doctor, a renowned scientist, the next prime minister. A child is who he or she is, not who their parents dream they’ll be. We just discovered this sooner and more dramatically. This is not to say that we have no dreams for our son, just that they have changed.
Our wish for Z is to be all that he can be, to fulfill his potential. And who is to say that his potential is any less spectacular than that of the kid we thought we had, that figment of our imagination who never actually existed to begin with?
Victoria Feinerman is the mother of four beautiful children, the youngest of whom has autism. She works as a professional voice talent, recording voice overs from her home studio. You can visit her at vicsvoice.com.