On April 10, Big Bird will make a new friend, Julia. Julia is a 4-year-old autistic girl with bright orange muppet hair. She is an integrated member of the community with unique behaviors, just like everyone else on Sesame Street. She is emphatically not a collection of deficiencies. Julia laughs, Julia sings, Julia plays tag, Julia sometimes ignores other characters, and Julia perseverates. Julia’s an asset to the team when they play a game of searching for shapes. I sing in the chorus of those who are thrilled that she will be joining the show. This could be a game-changer for the way the generation now in preschool perceives developmental differences.
I’m not sure, though, that toddlers are the most important audience for Sesame Street’s initiative. In my experience, young children accept any playmate who is not hostile. It is the parents who usually communicate discomfort, caution or pity, and it is the parents who have the most to learn. Sometimes those are parents of other children on the playground, but often those are parents of the autistic children themselves—parents who are trying to figure out their new world. So parents, please head to the section on the accompanying website (which has been up since October 2015) called “Videos for Parents.”
The parent section includes 11 videos of real families, all thoughtful, honest, and positive. I only cringe when we are told that a little boy is being taught to make eye contact. (I’m of the camp that believes forcing eye contact hinders autists’ efforts to interact and serves only to mollify my discomfort.) But people who know me know that a single, tiny cringe from a whole series constitutes a major endorsement. The series includes a laudably diverse group of young children with autism, both in ethnic terms and in terms of their autistic expression. Some of the children are verbal and one communicates exclusively through a tablet and gestures. All of the families include siblings, and I love the commentaries and images of the sibs as they interact with their autistic brothers and sisters. None of these children express pity or shame; they love their sibs, describe matter-of-factly how they communicate together, explain what their sib’s stimming manifests, and emphasize how they love and enjoy time as a family. Several of the videos include a muppet who asks questions about how to engage the child with autism. The advice, from “It’s just hard for her to talk when she’s swinging,” to “Sometimes he needs to take a break from other people,” to “Everybody likes to play chase” is spot on.
These videos do not sugarcoat the experience of parenting a child with special needs. The parents talk about exhaustion, stress, and the pain of realizing experiences shared with the child will not include expected activities such as learning to play baseball. They talk about the need to learn patience, and the times when “I totally lost my cool.” Their observations, their pain, their determination, and their pride resonate deeply with me.
One pleasant surprise was the producers’ choice to include interview scenes addressing a particularly touchy topic: the parenting dynamic between spouses in a family with a special-needs child. Every one of the videos follows a two-parent, heterosexual, nuclear family. Two of the segments interview fathers, while one interviews a mother. Both fathers are deeply involved with their children, but both admit that their wives manage the bulk of the child rearing, particularly for the child with special needs. The mother interviewed in the third clip affirms this perception of her and her husband’s roles.
In my experience and observation of two-parent households, this dynamic holds about 95 percent of the time. When there is a child with special needs, mom usually receives the phone calls from school, schedules the doctor appointments, and soothes the meltdowns. Dad (in the best situations) provides support and respite for mom. If both parents contributed to income generation before the child was born, it is the mother who usually cuts back on her work outside the home if the family’s resources allow.
I find it easy, even reflexive, to resent this unequal division of parenting stress. He has no idea what I deal with all day! But in my calmer moments I understand that my husband’s less in-the-moment experience can serve a beneficial purpose (as, of course, does the income he provides). The mother in Sesame Street’s interview acknowledges it too, and I’d like to call attention to it: “I’m the one who typically does everything special-needs related. While I’m in it and I’m kinda seeing all of these different things, my husband sees the big picture and he’s able to say, ‘Hey, I think you’re doing too much. Like I think you need to let [our son] do this by himself.’ And when I do listen to him, he’s usually right.”
Many parents do not have the benefit of a spouse who is equally, though differently, invested in the child. However, every caregiver can find sources of support who do not need to act and respond at every moment, sources of support who watch our dynamic with our children as closely as we watch our children. We need these people and we need to allow ourselves to hear what they say. Ultimately we may disagree with their suggestions, but allowing ourselves to be vulnerable enough to admit that another perspective about our child and our child rearing exists only benefits our kids. It also relieves us of the burden of having to be right all the time. We are loath to admit our shortcomings, especially because parenting a child with special needs so easily becomes an identity. We create a protective bubble around our child and ourselves. I’ve been there, and I still go there at times. But I do not believe any of us have to be as alone with this challenge or adventure as we sometimes feel. The benefits of allowing support seem obvious; the biggest downside, I think, is that we have to expose our own imperfections. It can be terrifying for sure, but it can also be so liberating. Watch the videos.