The Importance of Grief

At the age of 25 I had my first baby boy, at 8 lbs and 13 oz he was a bruiser. People who visited us talked about him being an athlete, maybe playing football because he was such a big guy. For 40 weeks and 5 days I had dreamed about his future... I was so full of excitement and anticipation. As I snuggled my tiny bundle I imagined all of the fun we would have together as he grew up; his first words, first steps, first day of kindergarten and high school graduation. I wondered if he would be into science or music, would he be a sports fan or a dancer? I imagined his success in whatever he put his mind to... envisioned him coming to me for advice as he made life choices big & small.

Great Expectations

This is what we do when a child is born, it's human nature. Parenting is a journey that begins with counting ten little fingers & toes, celebrating the birth of a happy, healthy baby. But it doesn't always go according to plan. What happens if a few years later that same baby receives an autism diagnosis? What if one day that beautiful future comes crashing down around you and everything is suddenly different? For one in sixty eight children this is their reality... every day lives are changing, future expectations are being forever altered because of one word, one diagnosis, one reality. Autism.

With the high prevalence of children being diagnosed with autism at this time, I often find myself in a mentoring role for parents going through the process of diagnosis or whose child was recently diagnosed. I connect with parents through social media or mutual friends and I try to guide people into this world that I've been living in for 10 years now.

My first piece of advice is always the same... Don't forget to grieve.

When parents receive a diagnosis of autism we all react differently. Some of us want to start down the warpath right away, hunting and conquering the enemy that we believe has stolen our child. Others of us want to try and forget what we've just learned and lean on the belief that they'll be fine and they will grow out of it. All of these feeling are right... there is no such thing as feeling wrong. But first things first we need to grieve.

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Some of us don't believe we need to grieve - our children are healthy and whole, they are alive and well and have their whole lives ahead of them. We may even feel guilty about our grief - our child is alive; physically healthy with a full life expectancy. But the fact is that the life we imagined for them is not the life that they're going to live. Our experience as parents is not going to be typical. The little things are not going to come easily and the victories are not going to be the ones we planned. For the foreseeable future their lives and our lives are going to revolve around autism.

So before hunting down services, applying for subsidies and funding, before hiring therapists and scouting preschools, before changing diets or shopping for supplements.... we must take some time to grieve. Feel the loss, let the feelings become whole, real and deep. Realize that the new life we are embarking on is going to be hard sometimes, and different than the lives of our friends. It's okay to be angry about that, and we don't have to sit back and tell ourselves to accept it.

We need to feel the loss, to feel our emotions deeply, wholly and completely. We might need a shoulder to cry on, support from our friends and members of our new community. We need to be acknowledged by clinicians and healthcare providers, encouraged to allow ourselves to feel and grieve.

Embracing a different perspective

Here's the amazing thing about grief - it evolves and changes. The evolution is different for every parent and every family, but it is a rule of time. As our grief evolves we begin to accept our journey, to embrace the tiny victories and the big accomplishments. We discover a community of parents like us, families in the same lifeboat. Many of find a new community of friends who are traversing the same rough waters that we are, we find that we can cling to each other. We learn tips and tricks from one another and celebrate each other's victories big and small. We understand when the feelings get too big and the tears of frustration just won't hold back. We embrace each other and therefore learn to embrace ourselves.

Because we are not alone.

For many of us grief evolves into determination, a desire to reach out and touch the lives around us. We begin to realize that by posting a simple status on social media, or telling others a bit about our experiences we're becoming advocates. We're educating the community and paving a brighter future for our children. By simply embracing our child, our family, our challenges and our victories we are advocates. But it begins with grief.... so don't forget to grieve.