Parents: Let’s Talk About Grief and Disability

Spectrum Disordered

Let’s talk about grief.

To be specific, let’s talk about a specific way the term “grief” is used: as a suggested framework given to parents to process the news that their child has some type of disability.

I’ve encountered this outlook throughout my life. My parents, by well-meaning professionals, were set up to view my disability as a loss: I was not normal, and would have to fight against my deficits for my whole life. They would not know what my future looked like and could not plan. They should feel Very. Sad. About. This.

Having a grief mindset instilled into my parents was the single most devastating thing that has happened in my entire life. I learned very quickly that I was broken, and that there was something wrong with me. I learned very quickly—and at a very young age—that my parents would have preferred a version of me that did not have a disability, rather than the only version of me that will ever exist—the actual me. How could they not? I overheard countless conversations of how scared they were for me. How I wasn’t normal, and what they should do about that fact. How to fix me.

I’ve been actively involved in autism advocacy for just under 15 years, facilitating support groups, public speaking, ranting on the internet. You may be somewhat aware that the views of autistic adults don’t always align with the view of NT parents of autistic children (surprise). During those 15 years, I’ve also seen tremendous positive change in what people, including parents, believe about autism, but this “grief” crap JUST WON’T DIE. Several years ago I severed ties with an autism non-profit I was a founding member of. The reason? A disagreement about the value of parents “grieving” the autism diagnosis their children had received.

When this disagreement has come up, I almost always get the “parent card” thrown at me: I didn’t have kids, so I COULDN’T understand what it is like to “go through” the experience of parenting a child with a disability. I was told that parents need to “grieve.” That it is an important part of the process that allows parents to “heal.” That “if you have children, you will understand how scary it is to get ‘a diagnosis’.”

On January 12, 2018, my wife gave birth to our beautiful, amazing baby boy, our first child. I had no idea how quickly I would find myself confronting “grief.”

Our boy was born exactly one month before his due date. He was born just before 8:00 in the morning, and it was with indescribable joy that we saw him enter the world. Knowing that the lungs are the last organs to mature, we were overjoyed to hear him cry!

Our baby cried for about five seconds. Then he fell silent, as he stopped breathing.

I watched as the nurse steadily escalated breathing support for my son. I heard the anxiety in her voice as she called for another nurse to assist. I watched his color change. His lips turn blue. I watched muscles pull tight against his chest, but his chest would not compress.

Fear. Fear that resists description. Thick. Heavy. Numbing. Draining. I walked behind my son as he was wheeled into NICU, crying, wringing my hands, feeling helpless. Another family was waiting in reception adjacent to the NICU. I saw their face light up with smiles, then they saw my baby, then they saw me. Their smiles drained. They looked away, a momentary expression of horror crossing their faces. “Please don’t let that happen to us,” they had to be thinking.

In NICU, our baby was stabilized but still struggling. We were informed he needed to be transferred to a hospital across the state, and that a flight for life crew was coming to get him. Our boy was intubated and placed on a respirator. And, a mere few hours after giving birth, my wife was rush-discharged so she could sit on a jumpseat in a tiny airplane with our baby boy, who was covered in wires and alone in a plastic box on a gurney. We had not even had a chance to hold him.

Private flights are apparently how our little man rolls
[image: newborn infant in an incubator, barely visible behind tubes and wires,
inside a flight for life plane, with a medical attendant.]

His plane had no room for me. I had to drive seven hours to get to the hospital. I had been awake for 35 hours straight, and had 20 more before I would see sleep. It felt like everything in my body hurt, my blood, my teeth. Everything humming in pain.

This is the end of the bad stuff. Our baby’s vitals were great on the flight. Immediately after admittance on the receiving end, he was taken off a respirator and began only getting oxygen by CPAP. My wife texted me pictures of her finally holding her baby boy, thirteen hours after he was born. I cried in relief. By the time I arrived, he was taken off the CPAP was and just getting oxygen. The next day he was taken off of oxygen and breathing fully independently.

We had planned for a lot of things, but never this. Life was wonderful, we had our baby. We could hold our baby. Eventually we would leave the hospital and start our life as a family.

On the morning of the second day in NICU, we had the composure to finally discuss what had happened. My wife was not yet aware that our baby had stopped breathing. I told her about the walk down the hallway. Told her what I felt and feared. She told me the first 24 hours of our baby’s life was both the best and worst day of her life, all wrapped in one. We talked about how powerless we felt, how afraid, how unsure and helpless and paralyzed by the unknowns of what would happen and what the future looked like, if there was a future. It was awful.

The neonatal nurse practitioner walked in while we were discussing what had happened. Every day she works, she sees people processing these same experiences. She has had this discussion with thousands of people.

She told us we needed to grieve. Grieve to process what had happened. That our baby did not have a normal birth. That we needed to move through the stages of grief to acceptance. That this would help us.

I was dumbfounded. It was a surreal moment to process that I was indeed a parent, getting the advice I have been told for years I would only understand as a parent.

Bullshit! We have nothing to grieve, as we have lost nothing. The story of our baby entering the world contains an eventful day and the expectation of some epic medical bills. Telling us to grieve takes away our agency. We wanted a baby. We have an amazing baby. Sometimes babies enter the world this way. Nobody did anything to us or stole anything from us. And oh my goodness is our baby amazing! Our baby, a matter of weeks old, is already showing us he is a smartass. He’s going to run circles around us. Our baby will be equally amazing if he has atypical development. He probably will, born to an autistic dad and two older parents.

[image: Newborn baby on its belly, seen from above, lying on a
fuzzy mat on an even bigger fuzzy bear cushion.]

This experience isn’t grief. I’ve talked with thousands of parents of autistic children who are still processing what it means to have an autistic child. I hear expressions of fear. Their roadmap of expectations of what the future holds for their child has been taken away, replaced with uncertainty. Doubt. Worse case scenarios running wild. They experience the exact same types of emotions that we experienced in a very acute, very severe way on our baby’s first day in this world.

We are failing these parents by telling them to grieve. What we need to give these parents is empathy. Their fears need to be acknowledged. They need support to build a new roadmap to process their fears. To move to hope, understanding, and of course, acceptance.

Our autistic community has millions of people who have been through this process, and yet we continue to fail new parents, leaving them susceptible to subjecting their children to harmful sham treatments, to traumatic experiences, to quantifiable harm to their children that they love dearly—chasing that thing that they were told they lost, that thing that snake-oil salesman promise to retrieve—that unfortunate idea of normal.

We can do better.