by Lillian Csernica on November 15, 2014
Emerian Rich is a wonderful lady I met at Convolution 2014. We both know the joys and sorrows of having a son who is autistic. Emerian has been gracious enough to grant me permission to share with you this explanation of a condition so many special needs parents endure. I never knew the name for it until I read Emerian’s article. I wish you all the same relief and validation I feel now that I understand better what ambiguous loss really is.
My Ambiguous Loss
Giving Birth to a Special Needs Child
by E. Rich
When you have a baby, your whole world changes. Everyone tells you this when you’re pregnant and it’s one of life’s solid truths along with death and taxes, but no matter how you prepare for it, or think you are ready, it always seems to catch you off guard.
My son was born happy and healthy, if a bit early, nine years ago. Despite complications during and after pregnancy, we were pretty happy for about a year. We reveled in the new baby smell, we giggled at his baby bandito burrito shape, we even smiled when he pooed. Every parent on the planet can recount these cute stories, whether you want them to or not!
At about age one, we realized we needed to get our son checked out. He was a happy, energy-filled cutie, but despite speaking a few words at six months, he had completely stopped talking right after and hadn’t said a word since.
We read all the books… at one year old, he should have been gabbing up a storm. Perhaps not Nobel Prize, award winning sentences, but something. A mama or a dada or a baba – anything would’ve been a gift to us.
Immediately we started looking for a cause. He was super active, so perhaps walking was a bigger incentive than talking. My husband had some jaw structure problems in his youth, perhaps this was the issue. I don’t know my biological father, could there be something on my side of the family causing this deficiency? Was he deaf? Was he mute? Did we feed him the wrong sort of formula and harm brain development? Was it the shots administered in the hospital? Questions and blame plagued us.
We enrolled our son in a speech delay program and got him checked out by specialists in the area. This time in our lives was devastating. Although birth defects and mutations happen naturally, and to more homes than anyone realizes, somehow we felt to blame. Maybe it’s because I didn’t breastfeed, maybe it’s because we didn’t spend enough time teaching him, maybe it’s our fault in some way. And then the real guilt sets in. It’s bad enough when you can’t achieve something in your own life and feel a failure, but when you’ve imposed a failure of yours onto another living being, it’s soul crushing. You want to push the reset button and hope a do-over will come out better. Normal. Like if somehow you could turn back time, change something you did or didn’t do so your child could have a normal life.
The next few months were spent learning sign language and driving our son to therapy sessions. It seemed like he was getting better, like there was hope, but then we were given the diagnosis. Autism.
It might seem overly dramatic for someone who hasn’t gone through this, but our entire world shut down. It was as if our son was taken away from us. Every hope and dream we had about him living a normal life – growing up, going to college, having a wife, making children, and living his own life, was taken away. I’ve worked with autistic adults and I’ve seen what they often have to go through. They live in care homes with little to call their own, bused out to work centers where they work for lower than minimum wage, with little choice, and little love. I know not every autistic person lives their lives this way, but when I first found out, my mind ran with the worst case scenario. My biggest sorrow when being told my child was autistic was not that I would have to spend the rest of my life caring for him, but everything he was going to miss out on. Going to college, falling in love, getting married, having a home and life of his own.
My mother was supportive the whole time, telling me, “He’s our baby and we will still love him, despite his disability.”
The statement was true, but I couldn’t get over the grief I felt for losing him as a “normal” child. For months I was so depressed, I couldn’t even talk about my son without bursting into tears. I held my head up high in public, taking him to specialists and trying to get him the help he needed, but inside I was a complete basket case.
I became angry and distant from others who tried to help by assuring me he could live a normal life, that they knew people who had autism and went on to live happy lives. Every time I shared my thoughts with others I felt dirty or like a bad parent. I was not saying I wanted to harm him, but there were times when I said that, had I known he would come out with autism, I would’ve chosen not to have him. The worst part was, I had no one to tell me it was okay to feel this way, no one to allow me to voice my feelings without judgment. No one understood. Even very close friends whom I confided in left me feeling like a murderess mother. They asked me if I was going through postpartum depression or if I needed to give the child up to someone who could take care of him properly. Believe me when I say that in the darkest moments of this grief, I did wonder if I should take him to someone who was better equipped to deal with the situation.
I remember one distinct conversation with my mother in which she said, “Yes, I know, you feel like someone has died.”
I replied, “Yes, but the body is still in the house.” And therein lies my ambiguous loss. If only I had known I was legitimately grieving at the time.
Dr. Pauline Boss, Ph.D., defines ambiguous loss as a loss where there is no verification of death or the person you love will return to the way they used to be. This is often a diagnosis given to family members who have lost a loved one in war where no body is found, or like the families of the 9-11 bombings where no body was recovered for them to mourn. Your brain just doesn’t believe it’s real. In those cases of war and terrorism, everyone rallies around you. They say it’s okay to cry, to let it out and mourn. But for the parents of a special needs child, you’re told to buck up and deal with it. This is the hand you’ve been dealt and that’s just the way it is.
I was shocked to find out just recently, I had been experiencing ambiguous loss for years. Sure, my son is here, he is alive, but the baby I thought I had, the dreams I had for him are no longer possible.
My hope in writing this is that new parents experiencing ambiguous loss are made aware of this condition and allow themselves to go through the grieving process without guilt. If I had known others experienced this kind of trauma and I was allowed to feel the way I did while dealing with it, I believe the healing process would’ve started a lot sooner.
Now that my husband and I have come to grips with the situation, we are ready to live out our lives with our special son who is growing smarter every day. He speaks, he feeds himself, and he’s even potty trained! We know he will change with time. There will be good days and there will be bad days. He may run for president yet! But no matter what he becomes, he is our son and we love him just as much as we would any “normal” child.
For those of you out there who are going through ambiguous loss and feel like you will never make it through, please know you’re not alone. Stay strong, keep moving forward, and allow yourself to grieve. It doesn’t mean you are a bad person, it just means you’re human.
If you feel yourself unable to cope, please seek the help of a professional therapist. Sometimes having someone to listen and understand gives you the strength to handle the next hurdle. Visit Dr. Pauline Boss, Ph.D. at: http://www.ambiguousloss.com
Emerian Rich is an author, artist, and mother of an energetic, autistic boy who has changed her outlook on absolutely everything. To find out more about Emerian, go to http://www.emzbox.com