Photo from Pixabay

From the St. Paul Pioneer Press Opinion Page, February 2, 2020

It was about this time, 26 years ago, that my toddler stopped talking and started moving at the speed of sound. It was the beginning of an unexpected journey marked by an unexpected discovery, shortly after his second birthday.

I laid awake at night, wondering what life would be like for a person with autism.

Would he ever speak again?

Would he always live at home?

Would he ever drive a car?

Would he ever work?

Trained as a journalist and a lawyer, I relentlessly plied the parade of professionals who entered our lives with questions.

Yet, I got few answers that helped me to replace the picture of the life I’d imagined for him with a new picture of the life he would live.

I left my position at an international law firm and set about doing whatever I could to ensure he lives his best life. It’s a lofty goal at times, one that requires nearly daily advocacy in one form or another.

Recently, I had a conversation with a young mom who also became an unexpected caregiver and advocate.

In Kate I see my younger self — fearful, lonely, and overwhelmed by the reality that her son has significant needs that will last his lifetime.

She has many questions and few answers.

Will his older brother be able (and willing) to manage the responsibility for a sibling who is completely dependent upon others?

Should she have a third child to share the caregiving duties when she and her husband have passed on?

I’ve been paid to ask difficult questions. But Kate works in a service industry. English is her second language, Minnesota her second home.

Navigating not only the medical world, but also a complex and cumbersome bureaucracy, is overwhelming for me. I can’t imagine how difficult it is for her.

So, for Kate and all the other mothers like her, I offer these words.

Buckle up. This will be a bumpy ride, filled with highs, lows, potholes as rough as a St. Paul boulevard — and occasionally, smooth interludes.

You’ll be forced to navigate a complicated and inefficient system to acquire and maintain the supports your son will need.

At times it may feel like you are in the land of Oz. Some stranger behind an invisible curtain will make decisions that impact your son and your family. How much funding will he receive? Who will work with him?

Staffing is an ongoing challenge. So, strangers will come in and out of your home and your life. While they may feel overworked and underpaid, they will be your lifeline. Let them know they make a difference.

Be prepared to sit through endless meetings and sign off on countless educational and service plans without a clear picture of how (or if) they will ever be implemented.

Be respectful but be persistent. Be your son’s voice. Be the mama bear I know you are.

Expect to be frustrated and fatigued.

And expect to be relieved. Just when you can’t imagine how you will carry on, an amazing person will enter your son’s life – and yours. These people have been my son’s teachers, coaches, personal care attendants and therapists.

Eventually, they will move on, leaving a big void – until the next amazing person appears.

Find a kindred spirit who can nod with true understanding and offer the right words to give you the fortitude to power on.

Embrace unexpected joy. The child who knows you are his everything will love you with all his heart.

Nurture yourself. Make time for something you love, that makes your heavy heart feel lighter.

Nurture your other relationships. Your husband and other family members need you, too.

If people offer help, accept it, with gratitude and grace.

After more than two decades on this unexpected journey, I’ve reluctantly recalibrated.

Answers that were opaque in the ‘90s are translucent today.

My son does speak. He frequently offers useful insight into how his mind works and what his autism means to him.

He lives in his own home, with support from paid staff.

The only vehicle he will ever drive is the little orange and yellow Cozy Coupe he tooled around in as a toddler.

Thanks to his job coach, he is cautiously optimistic about being hired for a new job. It will offer a paycheck and a purpose, which he craves. While it’s not the job I would have envisioned years ago, it’s perfect for him today.

That picture I had in my mind of him rocking the college experience, finding a great partner and giving me adorable grandkids is framed in another mother’s home.

But I’ve made my peace with it.

Parenting a child with autism took me in an unexpected direction. It’s been depleting, to be sure.

But it’s also been fulfilling. I know I’ve had a profound impact on the life of someone I adore, for he’s told me so.

Last summer, when I was filled with frustration and despair, he told me he knows how much I do for him and that he can test my patience. Then he looked at me with imploring eyes and said, “Mom, please don’t give up on me.”

~~~

If you enjoyed this piece and would like to read more of Caryn’s work, you can sign up to receive her columns by email. You can also purchase a signed copy of her award-winning memoir, “Bitter or Better: Grappling With Life on the Op-Ed Page,” which includes some of her most popular columns, here. Need an inspirational speaker who offers a roadmap to living the “better” choice? Please reach out.