Parenting the Child You Did Not Expect

17 years ago, a perfect baby boy was born. Because we understood him to be perfect, we named him Elijah. We knew of course he was special, as most parents do. He has always had the most amazing, loving spirit.

When he was around a year old, we started to notice subtle and then not-so-subtle developmental “concerns.” For the next year and a half our life went from that of a happy, sleep-deprived new family to constant appointments, arguments, questions, concern and frustration. We lost our way as a family. We worried and argued and withdrew from our extended family and friends in a sort of retreat from the world.

In my effort to seek knowledge and understanding of what was “wrong” or different about my son I lost sight of his wholeness and started medicalizing him in lieu of mothering him. I lost my way as a parent. In an effort to “fix” my son, I failed to see the truth: he was already whole.

A month prior to Elijah’s 3rd birthday, and four days shy of the birth of his younger brother Nathan (another perfect baby), we were given another label to add to that of son, grandson, nephew and cousin. The label was autism. We were overwhelmed with negative emotions and impossible schedules that to be honest, almost crushed us both emotionally and financially in the coming years.

Simultaneously, my husband and I became painfully aware of other people’s negative assumptions about people with disabilities. This was frankly too much to bear when added to our own feelings.

During this time I began having a recurring dream. Until recently the only people who knew of it were my husband, my best friend and my therapist. In my dream everyone I knew and cared about was on a luxury cruise ship (oddly enough we have never been on a cruise) enjoying life or their trip, while my husband, sons and I drifted nearby in a dingy. The ocean liner came closer; we called out to it, but were not heard. The great ship sped past us, creating a wake so great that our tiny boat began to take in water. I thought we would all drown, and yet, here I am to tell the tale. I do not think it takes a Ph.D. in psychology to interpret this dream. I will say it adequately paints the picture of how I felt at this time.

During this time, I embarked upon a personal journey of self-reflection and discovered a kindred spirit in researcher and fellow social worker Brene Brown. Dr. Brown discusses the power of vulnerability and how allowing ourselves to be vulnerable will transform the way we live, love and parent. She points out how the bias we all have can lead to a cycle of shame and blame. It is from her that I adopted a quote as my personal Mama Mantra: “We are imperfect, we are wired for struggle, we are all worthy of love and belonging.”

I have learned some profound lessons on this journey, some of which I would like to share with you now.

1. Having a child diagnosed with a disability is hard. It is not the worst thing that could have happened. It is fine, even healthy to acknowledge the “child you had expected” is gone.

2. Grief, guilt and anger are real, necessary steps toward acceptance. With acceptance, most of those feelings are lifted, but not gone. They like to linger below the surface and pounce into the light from time to time.

3. No one is broken. No one should ever feel they are broken — especially not a child. Every child needs to feel wholehearted love.

4. Disability is a part of the human experience. It is natural for people to be diverse. It is part of what makes us human and vital. Different truly is “normal.”

5. In our family, we will get there — in our own time and our our way. Once we stopped focusing on missed milestones and what wasn’t working for Elijah, it was much easier to focus on his (and our) progress.

6. Parenting is the most ego-involved activity we participate in. Parenting the child you did not expect — not the one you did not want, the one you did not expect — can make parents vulnerable. Autism gave us the gift of being able to take our own egos out of Elijah’s life and truly see him for who he is. We wish for him to be a happy, self-sufficient adult who is able to contribute to his community in a way that has meaning for him.

7. As a parent of children with disabilities, I believe in what is possible. When I hear about young adults with disabilities going to college, getting married, being employed by large organizations and living in their own homes, I believe in possibilities. When I hear about schools that openly embrace inclusion for all students by supporting programs such as Best Buddies and Circle of Friends, I believe in possibilities.

8. Sadly, no matter how much a family values their own child with a disability, our society often does not. We don’t need to cure people who are different; rather we need to embrace diversity. People are individuals, not labels or bias. People with disabilities belong in all areas of our society. In an inclusive community, we see each other as people, not as an ability, disability, sexual orientation or the like.

People used to ask me how they should refer to my son. They meant, “should I call him autistic?” I would respond with, “Why not use his name?” People with disabilities often have their diagnosis used as a part of their name more often than their actual name. In my son’s case he has become: an autistic 11th grader, “that weird kid” with ASD, ASD-17-year-old male, Eli PDD-NOS (former diagnostic code). We see him as Elijah: a musically gifted, loving, movie aficionado and funny young man. All these are qualities that come together to make him uniquely him.

My son has many gifts. He taught me not to judge others or myself (I’m still working on that last one). He has taught me to have fun every day. That sweating the silly stuff is truly sweating the silly stuff. Today, Eli is thriving in a mainstreamed junior attending our local public high school. He is a loving son, brother, grandson, cousin and friend.

Thank you to both of my boys for pushing me to be a better parent, advocate, psychotherapist and person every day.