We usually think about grief when we think about death. But, grief can also come (and usually does) with a diagnosis of autism. Suddenly, the perfect world you imagined for your child is shattered. Your life is now filled with teachers, specialists, IEPs, PECS, and a host of other things you had never heard of before. It is overwhelming.
When Ravi was in his first year of preschool a lovely social worker set up a poetry group for parents. We met one night a week and were just encouraged to write in our journals, compose poetry and share what was going on in our lives. Looking back, it was partly a writers workshop and partly a process group. At this time in my life, I was running around like a chicken with my head cut off. I had a toddler on the spectrum and a newborn. I was learning all I could about autism. I read and read and read, researched and researched. I was positive that if I just learned enough, I could find the magic bullet and this whole problem would be cured. I had a lot to learn. As I was relating this to this wise social worker, she asked me a pertinent question. “Have you taken time to grieve?” Grieve? I thought to myself, who has time for that? I am on a mission to save my son! But grief is an odd and slippery sort of thing. You can ignore it as best as you can, but it will raise its fist at odd times and sucker punch you right in the gut. I could be driving down the road and suddenly, inexplicably, find myself in tears. I would watch typically developing children at the park and want to cry.
Over time the grief diminishes, but never completely goes away. It often comes back at birthdays or anniversaries. You will see your child’s peers graduate from middle school or high school, learn to drive, get their first car and realize that this probably will not happen to your child. This can be very bittersweet.
I encourage you to acknowledge this grief. If you don’t it will raise its head anyway. But do not let it completely engulf you. As your child grows, try to focus on the many milestones he/she has met this year, rather than comparing him/her to the neighbor down the street. You will see forward progress, though it may be slow growth over time. Rejoice in what your child can do rather than wallow in self pity about what they can’t.