Parenting The Child You Did Not Expect

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13 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 and thankfully, still does.   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 and as a couple. 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 medical-izing 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 – that 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. It was during this time that I began having a recurring dream, one that 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 I 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 speed 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 that it adequately paints the picture of how I felt at this time.

It was during this time that 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 Special Needs Mommy 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, as “Differently Abled” is HARD, it is not the worst thing that could have happened. Although to be fair 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 (not gone – they like to linger below the surface and pounce into light from time to time).
  3. No one is broken; no one should EVER feel they are – 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 vital.
  5. In our family we will get there – in our own time, 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 that we participate in. Parenting the child you did not expect (NOT the one you did not want – did not expect) makes 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 or “possibility over disability.”
    1. When I hear about young adults who are differently abled going to college, getting married, being employed by large organizations and living in their own homes – I believe in possibilities.
    2. When I hear about school that openly embrace inclusion for all students by supporting programs such as INCLUDE and Circle of Friends-I believe in possibilities.
  8. Sadly my final realization is not positive. No matter how much a family values their child with disabilities, our society does not. People with disabilities are among the most marginalized on the planet. Close to 1 Billion people live with disabilities (WHO). 1 in 5 US citizens are living with a disability (US Census Bureau, 2012).

We don’t need to cure diversity; rather embrace it. People are individuals not labels, assumptions or bias. People with disabilities belong in all areas of society. In an inclusive community we see each other as members and assets not ability, disability, sexual orientation or the like.   Human kind is any persons “own” kind.

People have asked me in the past how they should refer to my son. They meant should I call him ‘Autistic or disabled?’ I generally say, “Why not use his name?” People with disabilities have their ‘label’ used as a part of their name more often than their actual name. So in my son’s case he has become: An Autistic 7th grader, THAT kid with ASD, Autism 13 year old male, Eli PDD-NOS no wonder he thinks he IS Autism. We see him as Elijah, a musically gifted, loving, and funny young man.   All these are qualities that come together to make him, uniquely him.

My son has so many gifts, he taught me not to judge others or myself (still working on that last one). He has taught me to have fun–everyday. That sweating the stupid stuff is truly sweating the stupid stuff.  Today, Eli is thriving in a mainstreamed seventh grade public school. He is a loving son, brother and friend.

Happy 13th birthday, Elijah, thank you for pushing me to be a better parent and person everyday.