I’m a Forever Mother, Not a Helicopter Mom
“Don’t be a helicopter mom!” she said brightly. “You want him to function on his own, don’t you?”
I looked up from my credit card receipt. I had just ordered a new pair of glasses for my son Jack.
I am not a Helicopter Mom.
I am a Forever Mother.
A Forever Mother will spend the rest of her life taking care of her child’s day-to-day financial and health care needs. We arrange appointments, oversee medical care, and manage bank accounts long into adulthood.
This is not by choice.
There is another world inside of us that feels too hard to explain.
We don’t say the words that sit firmly upon our psyche, like elephants in an elevator: guardianship, group homes, family court.
We don’t admit we are stuck on a roller coaster of highs and lows, hope and grief.
We don’t admit how much we think about what will happen when we die.
I mean, it’s not exactly the stuff you talk about in Starbucks.
This is what we do. We isolate, and worry, and hope, and plan.
Standing in the optometrist’s office, I thought about a conversation I had with a mother in the grocery store. She insisted her kids would only apply to Ivy League schools. Listening to her talk, I felt a surge of rage so strong I had to turn away.
My son is in what you’d call a program. It has staff from 7:00 in the morning until 11:00 at night. He works with an academic team and a social pragmatics coach and an expert in life skills. It is perhaps the opposite of Ivy League.
There are days I feel like I am on the phone for hours.
The pediatrician to talk about changes in medication.
A new therapist trying to make room in his schedule.
His neurologist to figure out a new behavior.
I am not a Helicopter Mom.
I am a Forever Mother.
Standing at the counter with a pen in my hand I wondered how far I should take it. Should I just thank her and walk away? Or do I take a moment and explain?
This is the push-pull of autism advocacy. As much as I don’t want to, I have to reach my fingers toward the red-hot flame of misconception.
I have to tell our story. I have to make space for him in the world.
Some days I feel like I’m screaming into the wind, to be honest.
I thought once he learned to talk, it would be okay.
I thought if we just found the right preschool, it would be okay.
If we got through third grade, then sixth grade, then high school, it would be okay.
If we found a program after graduation, it would be okay.
Some days, it is not okay. Some days, it is a tremendous effort to move him forward.
Autism is not his fault.
It’s not mine, either.
What about us? I want to shout.
We did everything that was asked.
We sat around conference tables and listened to IEP goals.
We provided information to the courts and hired an attorney to get guardianship.
Desperately, I want him to live a life full of purpose and joy. At this moment, this feels slightly out of reach.
But it is a moment.
And moments are nothing more than quicksand beneath our feet. They change.
This is life alongside a diagnosed child.
You smile and forgive through your watering eyes.
You remember that bitterness and envy are short-term fuel.
Grief isn’t the enemy here.
We all have a story to tell.
The mother with Ivy League in her heart and sadness in her eyes.
The well-meaning woman on the other side of the counter.
I am not a Helicopter Mom.
I am a Forever Mother.
There is a difference.
This is not a choice.
Nothing about this is a choice—from obtaining guardianship to researching post-high school programs to managing medication.
Autism made the choices for us.
With all my heart, I want him to fly.
It is easy to assume our story is a story about an autism diagnosis, when in fact it is much, much more.
It is the story of a tender father, coming to terms with the everlasting commitment that is raising a complicated child—a child who may never earn for himself, or understand a mortgage, or raise a family of his own.
It is the story of siblings taking care of siblings, and the looming fear of one’s own mortality.
It is the story of a world so seemingly narrow, there is no choice but to pull it apart cloud by cloud.
Sometimes I’m not sure I can do it. This is my truth.
But I will.
I will do it because he is worth it.
I will do it because have surrendered to this life I didn’t ask for, but I love all the same.
He’s going to function. It will just be a little differently than most.
This is okay. After all, a life lived differently is not a life less lived.
We all have a story to tell.
We tell it for the simple reason that things are not always as they seem.
“I know,” I began. “It’s kind of complicated.”
Beverly Ramirez
December 12, 2022 @ 11:09 am
I have been following your family’s journey with autism for years now. What an encouragement your honesty and openness are on a weekly basis. I can so often relate to what you are living and thinking and feeling – the complete daily mish-mash of hopes and worries, joys and tears, fight and flight reactions… From what I can read and see, you and Joe and your kids are doing an amazing job together – not perfect of course (who is? what is?) – but definitely amazingly good! I applaud you and admire you all for your dedication and love and perseverance. May God continue to bless you and help you – and may you have a wonderful Christmas this year!
Peggy
December 12, 2022 @ 2:56 pm
You are a forever wonderful mom. I love how you express your spots in a day, in life and planning for the future with openminded loving eyes.
Janet Anderson
December 12, 2022 @ 9:36 pm
I also admire you and at the same time feel your pain. As a grandmother I always thought I could make everything right for my daughter and autistic grandson/ I was wrong, but I continue to have faith, hope with love the answers are out there, never give up. God bless u and your beautiful family. Have a Merry Christmas. Forever Mom.
Lynn
December 12, 2022 @ 11:34 pm
Your honesty is refreshing. It is nice to not only feel your vulnerability as a Mother but sense your hope as well. Keep on trucking and we’ll do the same. Love following your story. ❤️🎄❤️🎄❤️
terismyth
December 16, 2022 @ 10:17 am
I can totally relate.
I would take it one day at a time. Never looking too far forward into the future.
But now that my son is 30, it’s not that easy wondering his future, wether or not he finds employment, if his girlfriend will stick around or if he can pay his bills.
Actually, my ADHD son has more trouble managing and retaining jobs, keeping his home organized and clean, and mental health/depression.
I’m lucky we all live close and can be there in less than 7 minutes in case there is a need.
I like the “Forever Mother.” Aren’t we all forever mothers?
You are my favorite writer.