As written by Linda Pollack Orleans
The season I’ve been preparing for the past several years is here. This is the season my autistic daughter’s peers settle into their new college life or embark on some other momentous move towards independence.
As I reflect on my first 16 months as a brand new mom, I remember forming close friendships with other new moms that I met in “mommy and me” groups, Little Gym classes, and various music classes for our pre-toddlers.
We would seamlessly get together for weekly play groups at rotating houses. We’d take our adorable babies to parks and out for lunch, chatting, laughing, snapping pictures, as I was blissfully unaware that anything about my precious girl was different.
Then at about 17 months, our daughter began to lose words. She stopped consistently responding when we called to her. My husband and I started to see meltdowns from overstimulation. Gradually, the awareness that our situation was vastly different from the others painfully seeped in.
Along with grave fear, there was hope that intense early intervention would turn this regression around. Maybe she could still have those once assumed opportunities for college, driving, career, marriage, and a family of her own.
However, as our daughter approached the age of 7, it became apparent that no matter how much therapy she had, how hard she and we worked, and how much incredible progress was made, our path would probably not resemble anything we had anticipated during her infancy.
Although not fully clear, the picture of our trajectory began to reveal that personal assistance would most likely continue to be a necessity for our girl’s future, even at a time when most of her peers would be venturing out on their own.
It is true that over the years tremendous progress has been made. Words came back. Enjoyment in going to public places returned. She again relishes spending time with friends. Reading and writing became something she loves.
During her mid-teen years, she began to communicate more thoroughly through typing. With focused practice on her keyboard, to our amazement, she began to compose beautiful poetry, share deep thoughts, humor, and wisdom. We saw even more of her personality; one that is articulate, witty, funny, sassy, and wise.
Yet, even with all the glorious gains celebrated, we still cannot risk leaving her completely alone for more than 10 minutes at a time.
If we turn away for too long, she might run outside and into a neighbor’s house looking for food, while we frantically search the streets for her. Or, despite her awareness of safety, she may feel so overcome by a compulsion to dart toward another destination that she forgets to check for cars before running into the street. There is also the possibility that if overwhelmed and highly anxious, she won’t be able to respond to a stranger or police officer asking for pertinent information.
As she now tells us, sometimes her mind is not in sync with her body. Her body does not always cooperate with what she wants it to do. During these moments, she needs support to help her regain control. So going out completely on her own is currently not an option.
We’ve come to terms with the fact that no matter how smart, talented and charming she is, school, jobs, and life will look different for her.
Now that this season has approached, I watch as all her early playgroup friends have ventured out on their own. Every. Single. One.
I am truly very happy for them. I smile as I see posts of them on social media. I enjoy hearing where they are and what they are doing. I always love getting together and catching up with them and their parents.
Still, I’d be lying if I said that the reminder of what our daughter is missing doesn’t sometimes cause a sting like that of a wasp. A sting reaching so deep into my heart that I find myself inwardly screaming “ouch!”
I soothe this wound by thinking about the gorgeous girl who changed my world for the better. The girl who has jumped over countless challenging hurdles, showing us what true bravery and determination look like; who types some of the funniest, most witty and wise words I’ve ever heard; whose voice is my favorite sound in the world.
As I watch our daughter go confidently and productively out in the community with others; watch her now advocate for herself by typing exactly what she needs; and see her happily taking rigorous virtual classes, I realize these are milestones towards greater independence, too! Milestones that fill her dad and I with pride and gratitude.
Periodically though, hearing someone I’m introduced to ask me, “oh where is your daughter at college?” causes my stomach to sink a bit. My answer comes rolling off my tongue easily now: “We’re on a different path. Our daughter has autism.” Saying those words does not upset me anymore.
Still, the harsh, painful stings that accompany some of the suffocating extra challenges she faces will probably never go away.
However, I know something else that will also never go away: the feeling of pure exuberance I get from her smiles, love, charm, humor, progress, and many new and exciting endeavors. I will gratefully and blissfully continue to hold on to all of that with my whole soothing and joyful heart.