In the Beginning

 

Dear Mom of a Newly Diagnosed Child,

Right now, you may be hearing so much. "You were born for this.", "God doesn't give things to people you can't handle", "I'm so sorry". 

You may hear "You are so special". "This is a gift". You may get asked "Are you okay?", "What is your child's special gift?".  

Reality is you may just be hoping that you can make it through the day, the hour, the minute. Reality is you may only be able to just breathe. 

No matter what you are feeling, no matter where you are in the newness of the diagnosis, no matter how you feel, it's all okay.

In 2015, my daughter was diagnosed with autism. While I knew she had autism going into the doctor, the confirmation shattered me. While I kept it together in the office, as we buckled in for the 40-minute drive home, my heart began to hurt. I physically felt ill. 

I cried. No, I sobbed uncontrollably as every thought about autism and its impact on life flashed into my mind. I am an overthinker anyway, but my brain seized up and all I could see were snapshots of her life as it was and as I imagined it was going to be. I thought in pictures as I realized there may never be dance class, there may never be friends, there may never be a prom or a wedding and how one word, one diagnosis stole so much from my child, from my husband, myself and her siblings. How one word, in one instant changed our life. 

As we drove, my husband, stoic, pragmatic, understanding let me process as I do, loudly. He listened as my sadness and fear turned to a plan. One that included therapy and treatment and how my background in education had to have a positive impact on the trajectory of my daughter and her prognosis of life with autism. I am a doer, I like action. I like plans and I like to know how everything will play out. What would ensue was far more than I could ever plan and each day I recognize that I will never be able to plan but reality is, no one can.

They say you grieve when someone dies, but on that day, I began the grief process of losing the child I imagined and welcoming the child that I had. I've had push back from that statement, but I stand by it. No one goes into pregnancy saying, "I hope my child struggles" and that is the truth. We want to see our children healthy, happy, successful and reality is a diagnosis can sucker punch you so hard it takes years to come up for air.

The process of learning to live our new normal took years and if you asked, I'd say some days I still process exactly what that "normal" is. There are moments that the diagnosis feels new once again. It happened when she was denied therapy and services that would benefit her in the long run. It happened when we began early intervention, when we entered school, when behaviors crept in that I didn't understand how to parent and when my other children were impacted. It happened when I trained as a behavior technician imagining the struggles we could face. It happened when my children had friends over that didn't choose to love or like my daughter as she was. It happened when I wanted her to have what my other children did in sports and activities and no matter how hard I tried or others tried, she just couldn't do it. It happened when I watched my friends' children who I walked beside through pregnancy continue developing and we fell behind. 

Those moments continue.

It's happened when we moved, when I recognized she wouldn't "always be cute", when adults didn't seek to understand but instead chose to shun my child because she was different. I struggled when we were laughed at in stores, when people just stared and when we encountered unkind people in church of all places. 

I struggled when she eloped and I thought of what could have happened as she ventured into the darkness of the night, alone and what could have happened if the good Samaritan hadn't called 9-1-1.

All this said, I recognize that autism has also brought purpose to our lives. It has changed our reality in so many ways, but it has also taught me to stand up for what I believe in, to be more effective in communication. To relish in the small moments, to realize how precious life is. It has taught me to cherish and celebrate what I once considered inconsequential. It has taught me it's okay to be different and sometimes being different is even better than being the same. It has taught me I can't control everything and that sometimes it's okay to just breathe. It has taught me to celebrate everything, even when it's a milestone no one else might celebrate. Its taught me compassion. Its taught empathy. Its taught understanding and kindness.

I know right now as a mom of a child with a new diagnosis, the good may seem as if it's gone but I promise it's still there. It just may look a little different. 

Recently we have entered into a new chapter of our autism journey and like it was at the beginning I have moments of grief and moments of trepidation. On our journey there have been moments that I have had to stop, pause and reflect and remember the purpose is bigger than I am, I have stopped and realized that emotions and feelings no matter what they are all are all okay. 

If you are a parent with a new autism diagnosis, remember, while this too will not pass, the newness and uncertainty will. Always remember, you are not alone and it's okay to feel. It's okay to be sad. It's okay to be angry, scared and frustrated. It's all okay. One day, mama, I hope that you know you will look back and recognize the good even when it was hard to see.