When my son was three, we went through the nine month, arduous process of getting my son diagnosed with autism. At the time I already knew he had autism. We had started him on the Gluten Free Casien Free diet and put him in an ABA program. I was only going through the motions of getting a diagnosis because we were going to try to get the insurance to cover the costs of his treatment.
So when the diagnostic team of four professionals in white coats sat down with me to deliver the results of their evaluation, I was shocked to feel myself not only well up with tears, but break down and cry. And the crying didn’t stop when I left the office. It continued through the next couple of days.
Over the last twenty years, I have heard countless parents describe this same phenomenon–strong grief and pain when they hear the doctor confirm their child has the serious developmental disability called autism. I’ve also heard other parents describe this feeling for receiving other diagnoses. They describe the feeling as:
- being hit in the stomach
- the world turning upside down
- having their guts ripped out
- being stabbed in the heart
- the world shattering
- a ton of bricks falling on them
Even if they had an idea that something was off about their child’s development, even if they suspected something. . .even if, like me, they already knew their child had autism. Hearing the diagnosis from a doctor somehow brings the understanding to another, more poignant level.
Please understand, that this grief does emerge because they love their child any less.
For me, this grief has been about the death of life I had envisioned when I had my child. All the time I was pregnant, I had dreamed an ideal life with my baby. I had envisioned a future of friends playing at our house, going to games, & parties. This dream life had now crashed. It was been replaced with a life of the bleak, uncertain, and hopeless future painted by the physicians of limited possibilities for my child. Physicians feel ethically obligated to not get parents hopes up, so they tend to talk about the worst possible outcomes rather than the best possible ones.
Over the years, I have met families who had the best possible outcomes and those who have had the worst. So in some ways I sympathize with the physicians’ dilemma of which story to present to families. However, what I know as a mother is that without a hope for something better, I will not take action that will help my child. And there is so much hope–more every day. So I’m giving you permission to ignore the bleak picture the doctor presents, and create a hopeful one for your child.
One mom described this as: The doctor said we should start thinking about an institution for our child. We were thinking Harvard.
Besides the grief, there’s the blame & guilt that also come out to plague you. We moms often berate ourselves with the useless and horrible question of , “What did I do wrong to have such a troubled child?”
For over forty years, medical establishment happily blamed mothers for causing their children’s autism. Even though the refrigerator mother theory has been thoroughly trashed, research is still done from the point of view that something the mother did caused autism in her child:
- she had her baby when she was too old
- she had a C-section
- the mother had flu vaccines while pregnant
- the mother was depressed in utero
- a mother had silver (mercury fillings)
- and the list goes on
Also understand, this grief, guilt, and blame is completely normal. Feeling grief does not mean that you love your child any less. This grief has been almost completely ignored by health care professionals until the last couple of years.
There is even some sense of “your child isn’t dying. What do you have to grieve about?” Sometimes the lack of empathy parents experience from the so-called experts can truly be shocking. There are a lot of people working as clinicians who really should be in a research laboratory dissecting things. They should be leave clinical work to those who are able to show some level of humanity, compassion, and empathy to patients. If you happen to experience someone like that, you have my condolences. You also have my permission and strong encouragement to find a more caring clinician. Be very vocal why you are leaving and tell them that they should consider changing their career focus.
Feeling grief just means that you had anticipated and dreamed of how life was going to be with your child, and now that has changed. It’s not only changed, but it’s been replaced by uncertainty. For me that was the hardest part. I no longer knew what to hope for my son. Would I hope that he could be an engineer who would design buses or the streets they rode on or do I hope that he could ride the bus independently?
After much soul searching and prayer, I realized that the only thing any parent can really hope for their child is that they are happy–that they have a happy life.
That’s why we have dreams of them going to a good school, making money, having a great career–because we think these things are the things that provide happiness. As I came to understand that, I came to terms with my grief.
I began to look for and see the activities and ways my son could be happy in his life. I made a point to do something fun together with him every day. I learned that if I tried to look over the long view of his life, the uncertainty and general pessimism would trigger my grief again, so I practiced focusing on today. What works today, and what is my son’s next step? And in that way, the joy of every day moments and the thrill of every day successes replaces that sadness of the life that could have been. Soon, you will come to see your child for the gift and amazing teacher of unconditional love that he truly is.
Be warned: if there is something that you were really looking forward to doing with your child–him going to sleep over camp, playing Little League or high school football, or attending prom, living on his own, going to college, marrying, . . . . . and he is not able to do those things, the grief will return.
Just be gentle with yourself. Find a friend. Find a therapist. And know that it’s ok to grieve.
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