Impact Feature Issue on Supporting the Social Well-Being of Children and Youth with Disabilities
Creating Social Capital:
One Family's Experience
Human beings are social beings. Families, friends, and communities are social structures. Most of us are hardwired to seek and maintain social contact. Indeed, extreme punishment is often meted out in the form of social isolation such as solitary confinement, "shunning" or banishment. Autism is a disability characterized by a significant degree of impairment in social interactions. While there are many therapies available to help children with autism overcome deficits in language, behavior, and sensory processing, the amelioration of social deficits remains elusive. Like many of the challenges faced by parents of children with disabilities, creating social capital for our children is another of those extra challenges that we undertake to support them.
Different, Not Deficient
I have sat across "the desk of despair." It is a desk where an expert sits on one side pointing out deficits, and where you sit on the other, trying desperately to process what the expert is telling you. It is often in the car, well on the way home, when the appropriate responses become clear. What many experts fail to see is that "differences" are only perceived to be "deficits" by those who don't understand them. Yes, my daughter, whose disability is on the autism spectrum, does not relate to others like most children. However, I know beyond the shadow of all doubt that friends and social contacts are important to her. There are programs to support social interaction, some of them very good, but the day in and day out establishment of social capital falls largely to parents.
The Early Years
The first few years after the diagnosis of autism were a fog of therapies and driving between them. In a typical week, Jenna would have two sessions of speech therapy, one session of occupational therapy, three mornings of special education preschool, and 35 hours of in-home behavior therapy. We tried all of the therapies because we wanted our daughter to learn to communicate and have a chance to go to school. Most of all, we wanted Jenna to have friends. In a flash, 3 years had passed and we were on the threshold to kindergarten. We were terrified. Would she stay with the class? Would she follow directions? Would the other kids like her? Would she be nice to them? What was the use of all that learning to talk if there would be no one to talk to?
Here we made a major decision: Our daughter was to be fully included. Our logic was something like this: If you want to learn to play tennis, do you take lessons from your neighbor who plays at your level, or do you go to a professional who knows the game thoroughly? We wanted the experts, and there could be no other substitutes than real kindergartners. Our next strategy was not only full inclusion, but full immersion.
Autism, by its nature, is fundamentally a social disorder. There was a stark comparison between the way my neurologically typical daughter made friends and the way that Jenna seemed oblivious to them. At the same time, when Jenna did have friends around, it was obvious that she enjoyed them. We realized that in order for Jenna to make social connections we were going to have to take the lead. Thus, we hosted any event that we could and invited every child in the class. Living in the Midwest had a cultural payoff: When you invite someone's child to your party, it is incumbent on that child's parents to invite yours to theirs. Thus one party generated around 20 to 25 invitations to other social gatherings. If I were to offer one piece of advice for parents of children with disabilities, it would be to take the initiative and invite children to your home first. Volunteering at school also allowed us to get to know the other children in the class first-hand and facilitate social interactions.
For many of us, our social groups are people who have similar interests to our own. So, we undertook a full exploration of what talents my daughter had that she could eventually leverage into a social circle of like-minded individuals. We explored ice skating, dance lessons, Girl Scouts, soccer, gymnastics, piano, adapted horseback riding, softball, basketball, karate, acting, and the flute. Many of these activities were sponsored through the community, but we paid for a number of them on our own and were fortunate to have the means to do so. Community participation often and early also exposed Jenna to many children that she would see in different contexts. When we were at a playground or park, there were usually one or two children that we had met during our community activities.
Elementary and Middle School
In the mega mentality of our home school district, the neighborhood schools only lasted from first to fourth grade. After that, all of the fifth and sixth graders in the entire growing suburb were amassed into one large building for 2 years, and then matriculated to the dreaded seventh and eighth grade middle school. How could I possibly keep up on the "friends" network in such an environment? Further, the proposed model of special education in our public school pulled children out of the classroom or wedged an adult between the child and her peers. Neither model seemed to be the right social fit for Jenna. I didn't want Jenna to be a visitor to the class; I wanted her to be a full citizen.
We opted for a small, private school with two classes of 25 kids in each grade from kindergarten through eighth grade. We also elected to retain her in kindergarten for another year. Every year, the same kids, the same parents. By the third grade I knew every parent in her class on a first name basis and they knew Jenna.
We were very lucky that her school started much later in the day than the local public school. Our district worked with us to provide Jenna with special services, such as speech, occupational therapy, and adaptive physical education before her regular school day. In that way, she wasn't pulled out of class and yet still could receive some very valuable and excellent quality services from her public school.
In third grade we were blessed with a miracle, this one with red hair, freckles, and boundless enthusiasm. Her name was Corey and she was Jenna's self-appointed best friend. Corey ensured that Jenna was dragged (or "included") wherever Corey went, and Corey went everywhere (including to the Renaissance Festival, where the picture above was taken). The day Corey's parents withdrew her from Jenna's school, I openly wept. While the children at her school have always been and are kind and welcoming to Jenna, nothing in the world can replace a best friend.
Jenna is now a teenager. For some reason I had thought that disability meant a free pass out of the foibles of adolescence. Not so. The teenage years have come on in textbook fashion with raging hormones, bad skin, and a rather surly attitude from time to time. Keeping up a social network at this age is much more challenging. At a time in life when geeky is perceived to be contagious, Jenna continues to be invited and included. Here I would be remiss if I didn't mention that her classmates have been nothing short of phenomenal. Last week Jenna sang a duet with a teacher in the school talent show. At the end of the show, each and every eighth grader gave her a standing ovation. How often do you get the chance to comment on the kindness and acceptance of 13-year-olds?
High school looms on the horizon. This tight-knit group will go in many directions, with three private high schools and three public high schools all serving as possibilities. Jenna will go to a public high school. Transition services outweigh any other benefits that could be reaped from a private high school. Again, we are looking for a way to facilitate a social group for her. I'm thinking that Marching Band will offer that opportunity. Four years with the same kids, the perennial need for booster support, and the chance to host the band parties will again afford me some inroads to create opportunities for positive social interactions and set the stage for meaningful relationships. Those flute lessons are going to really pay off.
It's been a great run from kindergarten through eighth grade. We find ourselves again on the threshold of another transition; this time to high school, and while still terrified, we are ever proactive and ever hopeful.