Having worked with children on the Autism spectrum in the past, this is a population that is near & dear to my heart. I was glad that Susan allowed me a glimpse into her world from a mother’s perspective, & I think it is so important for all of us to think about & keep in mind.
Without further ado… here are Susan’s words:
Tickets to “MommyWorld” were given out but I wasn’t admitted to the main attraction.
In a universe where car pools, play dates and birthday parties reign, first-born children have the distinction of being their mom’s entrance fee.
Before kids, I’d have parental fantasies of suburban neighborhood youngsters banging on our door, asking my child to come out and play. While they’d bike or organize a pick-up game of baseball, we parents would be lunching on the patio enjoying sounds of laughter and our newfound friendships.
My first child, a boy, was diagnosed with ASD soon after my daughter was born.
Caring for a special needs toddler and an infant–two little ones who needed extra attention–created a level of stress I’ve never experienced. Once as I nursed my daughter, my 3-year old, frightened by a loud barreling truck, tore down our block going as fast as his little legs could carry. Frantic, I pulled my daughter off me, mid-nurse, slung her on my shoulder and raced after him hoping to catch him before he met the street.
I cried for days.
I had felt something wasn’t right. Though I tried to facilitate communication time and again, my son never showed an interest in other children. He was fearful of pre-school, birthday parties, play dates and other similar get-togethers. His desperation and terror regularly came through in his gripping clutch of my arm.
Still, in the beginning, I accepted invitations for play dates and parties, but my concerns were quickly confirmed. Eventually, parents stopped including us. Moms seemed to be uninterested in pursuing friendships. There wasn’t anything outwardly to point to, but it was clear my child wasn’t a contender in the typical world of their 3-year-olds. Realistically speaking, parents of young children were simply too busy to befriend someone whose path didn’t regularly cross theirs.
I can’t say I blamed them. My son was incapable of interacting with his peers. But that meant my own socialization into this possible community was a failure. His inability to be social rendered me disabled as well. Not that I didn’t have friends– but after all, I was a young mom wanting a mom-community.
Soon after his diagnosis, we enrolled our son in a unique communication-based, parent-child therapeutic nursery program. The interdisciplinary approach holistically addressed the social, emotional, behavioral and cognitive development of each child.
Part of this approach required parental attendance in the daily 2-hour program. The reasoning? A child’s disability doesn’t exist in a vacuum. It affects every aspect of a family’s life. Along with a team of skilled professionals, parents become an integral part of their child’s treatment.*
Despite the intensity of the curriculum, I was grateful I wasn’t alone. The simple daily act of walking into the school with my son without fear of pity or judgment was a gift. While our children were at their therapies or involved in class activities the director of the program would collect the moms (and dads!**) for a weekly support group. We’d discuss anything moms with special needs kids would talk about like their progress and setbacks, how we were (or weren’t) handling life outside the nursery or the latest interventionist theory.
Learning about each other’s struggles and immersing daily in our children’s remediation was the bonding experience I needed, the depth I was looking for. There was no sense in putting on airs here. This was no luxury. We were a bunch of vulnerable, worried parents. And though this was a club I never willingly joined, these gals were my ready-made support group—a pool of potential friends.
Over the years as I befriend and speak with others, I hear reams of stories by people who have a special needs loved one in their life. I discover a thirst for understanding, support, and a desire to belong.
To paraphrase the Rolling Stones, you can’t always get what you want but you get what you need. Community and the extraordinary support the nursery provided gave me the knowledge and confidence necessary to continue advocating for my son. Almost ten years ago I created a list-serve for just such a purpose: information and support for local special-needs families. I’m gratified when I hear how someone received the help they needed or a referral they used.
My son is now 20 years old. He works hard to improve his people and life skills and will likely always have to. I remain in touch with a few moms from the nursery. Our knowledge and ability to navigate our kids’ world has grown along with them. We no longer see each other daily but we do rely on the other’s help and support when needed.
Our children help determine some parts of our social lives, at least when they are very young. Though it was rough going, I’m fortunate to have known these parents. Shared pain and celebration allowed us to move beyond the superficial, toward compassion where shame and judgment have no place.
That’s the ticket.
*Because of mandated attendance for parents and the cost, many families did not feel the program was an option. Still there were others who moved or travelled long distances to attend. Bringing my son every day for three years was not easy in any way. Also, when we began, I had an infant I had to place in day care—an additional stress and cost. Luckily the program offered some financial assistance. I now hear some districts do pick up the tab. The nursery’s fundraising, too, has been very successful.
**Moms, dads, nannies, grandparents—virtually anyone caring for the child—could accompany her or him. Moms tended to be predominant but dads, like my husband, took the kids to school when their schedule allowed