We have a sweet children’s book called First Tomato, in which a young bunny picks the first ripe tomato and her mother makes her fresh tomato soup. Only after downloading this photo did I notice that the morning light reveals tiny spiderwebs on the tomato plants, a harbinger of Halloween. Taken just a few days ago, it already harkens back to seemingly distant, definitely brighter summer days, and I am hoping that the remaining tomatoes will ripen before the frost arrives. We wait all through June and July and into August for that first tomato, but we never can be sure when we will eat the last, finding sometimes that the days have gotten too short and we have waited too long.
It’s the Little Things
Living with a person who has autism brings surprises every day, some pleasant and some decidedly less so, but they always catch at your heart, one way or the other. Take this box of peaches. I left it in the back of the car for the night, knowing that if I brought it into the house that my son would eat them all before dinner and then I would have no fruit to put in his lunch the next morning. He is, after all, a teenage boy. This morning when I went to fetch the box, I found it like this, with four peaches eaten and the remaining pits carefully placed in each compartment (the two empty ones are the ones I put in his lunch). When I asked if he “sneaked the peaches,” he said, “Yes! And I left you the seeds!”
Empty Skies
The days that followed September 11, 2001, were uniformly sunny and warm as if even the weather stood stock still in the wake of that morning. And when we walked each morning down to get the paper in those first days following the attacks, the skies were noticeably empty and quiet as every commercial plane in America sat idle somewhere on the tarmac, waiting to hear that the coast was clear.
The skies are quiet now again, I noticed this bright morning as I walked out from under the canopy of trees into the open field at the end of the drive, but now it is the economy that emptied them. Airplane fares are high and far fewer planes are in the air. A friend who travels extensively and who finds himself stranded in airports time and again, noted, “Now, very often, you really can’t get there from here.” The idea of catching the next flight is no longer a matter of hours but sometimes days, even to major destinations. Luggage that must be scanned and checked requires more time to clear, extending the time required between flights – last spring we ended up renting a car and driving home from New York because 90 minutes would not allow us enough time to make our connection – the next flight home would have been 24 hours later. It was a three-hour drive – this is why people carry overstuffed carry-on bags and heave them into the overhead compartment.
Fewer planes in the air is not necessarily such a bad thing, but I have to wonder if I will ever stop assessing the collateral damage of that day – whether it distracted our institutions from proper stewardship of our economy, whether it fostered more hate than unity among us, and if my love of a clear September day has been hijacked permanently.
Fries for Kids & Tiny Dancers
We spent September 11 raising money for special education and being a family all at the same time. It’s not as easy as it sounds. As a family we made and sold french fires at a local festival with other families to help special education in our school district. We know some truly amazing people who made this possible, and we all come from diverse backgrounds – what draws us together is what we dream of for our children. There aren’t a lot of things we can do together to help out, but we found something in this activity today, and I am as proud as I have ever been of us and those we know for making it all come together and allow each of us to contribute. And in the background, First Responders from New York came here to tell us their story and their wish for peace.
And me, I began and ended the day in tears, wanting something lovely for me and my family and finding it as we ended the day and wended our way home singing aloud to Elton John’s Tiny Dancer, knowing somehow that the child in me, miraculously, has been given all she needed over the years. Who can ask more for that, when so much changed and so much is needed for us on September 11?
Dusting Off the Soapbox
I have signed up for another tour of duty advocating for special education in our school district and so am subject to ruminating and ranting about how to do this kind of work without becoming jaded. It’s probably already too late.
The local organizations, committees, boards and councils charged with overseeing or advising school districts are made up of people who have consciously chosen to volunteer and advocate on behalf of students and communities. These are roles people take on outside of their chosen profession; it’s not anyone’s day job (although we could certainly make a cases that it can be a full time job). In larger towns and cities the lines between volunteer organizations and professional and political organizations are distinct, but when it comes to schools (and churches, for that matter) in smaller communities, those lines become blurred.
My point: while the volunteer groups are in it (mostly) for the community and the kids, the same cannot be assumed to be true of educators and staff. Hear me out. At the outset it seems cynical, but education is a business and the currencies are power and turf – for every fabulous, gifted educator there are a dozen for whom it is a job where they do what they need to do, benefits are good, job security is great and the summers are open. Being a teacher or a special education provider doesn’t automatically make someone a better person or make them insightful enough to see what is best for each child; not everyone is equally good at their job. I hasten to add that people who volunteer don’t win the altruism prize automatically, either – they are just as vulnerable to power grabs and turf wars as anyone; for years we had PTA groups who refused to sit in the same room with each other to share fundraising and or even calendar event information.
Parents should recognize that administrators and teachers are under tremendous pressure to perform in a variety of ways, and for some teachers and schools the best way to get your students’ statewide test scores up is to get the children with difficulties assigned to another class or school. Inclusion is a wonderful idea that takes tremendous work to implement successfully; not everyone is up to the task.
I didn’t come to this view quickly or easily myself – someone in my family, a high school teacher and track coach for over 30 years – clued me in ages ago when my kids started school but it took some time for me to grasp his fuller meaning. He advised me that, just as in the business world, educators are (understandably) interested in establishing their place within the educational community and that parents and kids are transients in that world – parents come and go but, especially with unions, colleagues are forever. Sticking together and resisting certain kinds of change among staff peers is key to survival. I remembered this when I learned over the summer that teachers in our district were asking that their non-certified colleagues get the ax, regardless of how successful they were with the kids. I also thought of it during the various search processes where people lobbied to get friends hired or took our staff with them with them to new assignments. People have a right to pursue their professional goals, but sometimes those goals do not match up to those of the students they serve.
Thus, I think parents who advocate for their children with special needs hobble themselves when we assume that everyone at the table is in it only for the kids – we are constantly having to push people to make child-centered decisions because in many cases they really don’t know what that means and making a child-centered decision often means change – and we know that people are naturally resistant to change even when their intentions are good. We have seen again and again that some of the people working with our children do not learn quickly or adapt well to new methodologies. I’m not saying that such educators are not doing their best (though some aren’t); I am just pointing out that they are people who are not inherently more virtuous or altruistic than anyone else, that education is their job, and that parents and volunteer organizations would do well to remember that when they interact with district staff.
When advocating for children who are having difficulties, parents often feel so vulnerable and exposed by the process of asking for help they fail to see clearly what other people bring to bear on the situation. Parents are seldom at their best when their children are the topic of a meeting (duh) and this adds to the power imbalance and increases exponentially the possibility of misunderstanding. Most of the families that come to me at the outset of their interaction with the district tend to exhibit one of two postures: fierce and demanding, or needy and apologetic. The demeanor I strive for – and don’t always achieve – is unrelentingly realistic and collaborative. It requires listening when I don’t feel like it to people I don’t respect, overlooking small slights that are painful for me but that don’t affect my child, arriving with an agenda that has as many bullets praising things that do happen as things that require attention, and advocating for teachers getting what they need so that children get what they need.
Naturally, it is not fair or realistic to assume that everyone is as invested in a child’s success as the parent, or that they are invested in the same way; indeed I have seen several cases where schools offer help and parents decline services. In both schools and families there are so many things competing for attention and resources it’s impossible to give every issue, every child the attention they deserve. The key is to try, and to create and maintain a climate in which that effort is rewarded.
A Temple Grandin Moment
It’s the first day of school and the new ridiculously early schedule and the blazing heat make me feel like I imagine these cows feel – I just want to stand in the shade and barely move and not think at all. I am already nostalgic for summer and the late afternoon moments when, while riding with a car full of kids (autistic and not, for the record) past the farms, all of them would spontaneously start to moo at the grazing cows.







