Quinten was four years old when his mother, Rina, finally “accomplished” his diagnosis of autism spectrum disorder. “Accomplished” is how she describes it. Rina called around and found three pediatricians who could give a diagnosis, but the waitlists were almost a year long. Paying for a private diagnosis was not an option; Rina had left her job to care for Quinten’s needs and money was tight. The wait was excruciating, because everything Rina read about autism told her that early intervention was crucial to long-term success. Every day she would sit with Quinten, trying to engage him in some social play. She watched the days slip by as she waited to hear back from the doctor’s office. Rina cried on the phone to her mother and tried to explain why she felt so powerless and frustrated. In fact, she found herself crying a lot during those months.
In an act of sheer desperation, she called the doctor’s office and pleaded to be moved up the waitlist. “I was not a pretty picture,” she would later tell her friends, but through the weeping and her stubbornness, the office secretary finally broke down and found a timeslot for Quinten. It worked! It actually worked! After a lifetime of being polite and waiting her turn, Rina realized that she was going to have to be ferocious for Quinten. As the relief washed over Rina, she resolved to never let Quinten lose out on something because she was too mild-mannered to demand it.
In my role at the Faculty of Education, it often falls on me to explain to new teachers how to collaborate with parents. Parent-teacher collaborations can be difficult and, as a teacher and as a parent of a child with special needs, I know first-hand how complicated and combative these relationships can be.
One of the first things I tell my student teachers about collaborating with parents is that parents of students with special needs, like Rina, are dealing with pressures beyond those faced by all parents. The research on the well-being of parents of students with special needs is very clear: the added pressure often leads to toxic stress, depression, and chronic health concerns. When parents like Rina are overloaded with those stressors, it has been my experience that they may respond in two extreme ways. I call those two extreme responses the Summer Bear and the Winter Bear.
The Summer Bear describes an active, protective parent that uses will, strength, and dedication to navigate the school system.
Quinten is starting Grade 5 now, and since his diagnosis, Rina has stuck to her resolution to be a powerful advocate for her son. At first Rina found the school system to be slow to respond to Quinten’s needs but, with a little prodding, she found that it can be moved to action by passionate, informed parents like her. It may have taken some intense conversations with his resource teacher, some toe-to-toe battles with Quinten’s classroom teachers, and even threats of legal action, but Quinten has had the resources and supports that Rina knew he needed. She doesn’t even mind her reputation for being a pushy parent. She has found that Quinten’s new teachers have been less resistant to her ideas if they are somewhat intimidated by her.
You may have already crossed paths with one or two Summer Bears during your career. The Summer Bear is an unstoppable force. A Summer Bear will call you at your home to ask you about the student’s progress in geometry. Then, when you let the call go to the answering machine, the Summer Bear calls your principal to discuss the school’s failure to communicate clearly. If the principal is not available, the next call goes to the superintendent. Sound familiar? Summer Bear-type parents are so notorious that representations of them have been popping up in prime-time television shows.
In the opening sequence of the first episode of ABC’s Speechless, a sitcom about a family with a son with cerebral palsy, mom Maya DiMeo wants to treat her family to breakfast with a nearly expired 50-percent-off breakfast coupon. With three minutes until the coup-on expires, Maya loads her family in the car and drives wildly through town to the restaurant, at one point using the shoulder as a passing lane. As might be expected, the speeding van is noticed by two police officers in their cruiser. The younger police officer turns on the siren and readies himself to begin pursuit, but is stopped by the older police officer. “Not her,” the older officer says, turning off the sirens and sitting back. “Life’s too short.”
Although the representation of Maya DiMeo as a force for her children is played for laughs, the intensity and dedication of parents like Maya DiMeo can make the work of educators very difficult.
Quinten is in Grade 7 and Rina has been advocating for him tirelessly for years. Recently though, Rina finds herself exhausted by the process. Her battles with the school have worn her out. Starting in January, Quinten’s educational assistant support was reduced by .25 and, rather than organizing a meeting and demanding it be returned, Rina let the issue go. Not only that, but Rina has been finding herself less able to do the small things, like pack Quinten’s lunches. She used to use Sunday afternoon to cook a week’s worth of organic lunches, but for the last couple of weekends, she has spent her Sundays recuperating. Last week, she bought some of those pre-packaged meals from the grocery store and sent those in for lunches. Every day for years, she spent an hour after supper reading with Quinten and reviewing his homework – but now she just can’t summon the energy. “What happened to me?” she wonders as she cues up Quinten’s favourite YouTube show on her iPad and passes it over to him.
Another response to the parental demands of raising a student with special needs is the Winter Bear. To understand this parent, imagine a bear, still sleepy from its winter nap. The Winter Bear parent is slow to respond and may appear to only do the minimum to support the student. The Winter Bear won’t respond to your emails and has to cancel meetings at the last minute. It can be frustrating working with Winter Bears, but do not be too quick to judge them as inadequate or selfish.
Okay, confession time: the reason I know about the Summer Bear and the Winter Bear is because I have been both types of parent. Like Rina, I worked extremely hard for several years and then – though I’m not proud of it – I had to take a step back. I was completely exhausted! As for my daughter’s teachers, I have no doubt they had a difficult time working with me in both of those phases.
So, what do I tell new teachers about working with parents of students with special needs?
When working with parents of students with special needs, we should navigate three fundamental tensions: communication, access, and power.
Communication with parents of students with special needs involves more than sending a weekly newsletter and placing an occasional phone call home. Meeting early and meeting often will help you to “recruit” parents to your vision for the classroom. And, make no mistake, you need to convince parents to join your team. In my experience, meeting your child’s new teacher in September is terrifying, like you are about to throw your child into the river. It is hard to pass over custodianship of a vulnerable child’s academic and social needs to a stranger. Parents are, quite rationally, reluctant to trust you. Communicating effectively with parents is important because they need to know that you are capable, willing, and dedicated to the cause.
Here are the types of things that you can say during the first meetings to recruit parents to your side:
“I’ve read over your child’s reports and spoken with some of his former teachers, and now I’d like to hear from you. Tell me about your child.”
“Besides academic outcomes, what are your goals for your child this school year?”
“What are some of your anxieties about this year?”
You will also need to communicate throughout the school year. Be sure to set up a two-way system of regular communication. Establishing a “best time and method” of communication gives parents and teachers optimal access to each other when communicating.
Because parents of students with special needs often do their own research and come prepared with pointed and clear questions, it can be intimidating to discuss accommodations with parents. There may be no more passionate scholar of mild intellectual disorders than the mother of a student with a mild intellectual disorder. That said, it is a mistake to use edubabble as a defense tactic. Edubabble is the acronym-heavy and overly technical language we use to communicate a lot of information efficiently with other teachers. And, as you may have discovered, edubabble also has the adverse effect of shutting down parents by confusing them with unfamiliar language.
Parent: “Yes, but the new diagnostic tools have eliminated that criteria from the condition. I can’t believe you didn’t know that.”
Teacher: “Well, that issue is more of an IPP issue so it will be more relevant on the IPRC than the PAT. If you check out the TPA, you’ll see that I’m right.”
Without formal training in education, parents may be unfamiliar with the specialized terminology often used by teachers – but they will recognize and resent when it is used tactically to assert authority. Whether the discussion is about identifying a child as exceptional, developing an individualized plan, or giving more information about a project, the purpose of the conversation between the parent and teacher is about sharing information so that they can work together to better support the child. With this in mind, technical language should be avoided or defined clearly.
Power When tensions arise between parents and teachers, they tend to be about power. Who knows best? Who makes the decisions? Parents and teachers contribute different areas of expertise: teachers tend to be the experts on learning and classroom policy in a general sense (“I know how children learn”) and parents are experts on their son or daughter (“I know how this child learns”). It is important to recognize that both parents and educators offer important contributions to the discussion. Additionally, educators and parents should avoid making one-sided decisions and then forcing them on the other side. Arriving to a meeting with a list of demands may inspire resistance rather than cooperation. What is the solution? Instead of prescribing, try describing. When parents and teachers describe the situation, power is shared.
Examples of prescribing language:
“You need to use a different math technique.”
“You need to change how you get Sandeep ready for school in the morning.”
Examples of describing language:
“I’ve noticed Sandeep often becomes distracted during my lessons – have you ever noticed this type of thing at home?”
“Do you have any ideas about what the issue might be for him, or what I can do help him stay focused?”
When we use description-based statements, we are agreeing that both sides are equipped to recognize the situation and evaluate the solutions.
When parents need support
Avoiding tensions related to communication, power, and access is an important first step to working with parents of students with special needs, but we may need to do more. For example, working relationships with parents of students with Fetal Alcohol Spectrum Disorder (FASDs) may require a gentle touch. There tends to be a lot of stigma related to being the parent of a student with FASDs, particularly for mothers. Also, family breakdowns are common when children with FASDs are involved; many children with FASDs come from single-parent homes. The stigma and family pressures related to FASDs compound the difficulties we face when trying to develop positive relationships. It is important to consider the perspectives of these parents – potentially feeling guilty, judged by others, overworked, and alone – and to appreciate that in order to support students, we may also need to be a support for parents. We can do a lot to support families that are struggling, but we also have to recognize our limitations. Teachers are not therapists, and sometimes we help the most when we point parents to family services and other appropriate professional supports.
The purpose of this piece was not to suggest that parents of students with special needs are only ever Summer Bears or Winter Bears. I also don’t mean to say that these parents are caught in a cycle of yo-yoing between those two archetypes. I single these two patterns out because, in my experience, these responses are widely misunderstood and can ruin home/school relationships.
Look, it can be really tough being a parent of a child with special needs. That is just the truth of it. Parents don’t need your pity, though; they need educators to be understanding and to let them have some space to not be at their best. By supporting the parents and helping when possible, educators are building teams. After all, students only have two allies: parents and educators. If educators allow power struggles and the intensity of parental responses to deteriorate working relationships, the student suffers the most.
In closing, let me leave you with this advice: don’t fight the bear. Rather than resisting parents, find ways to be supportive. When we can work together, we do a better job of protecting the cub.
Elephant Grizzly in the Room
Even when teachers and parents agree on what needs to be done, funding can be a confounding tension. Schools are often asked to do more with less, so allocations of educational assistant funding and school resources may be shifted suddenly. From a school perspective, triaging funding to support the greatest need may make sense, but those funding changes can feel like a catastrophe to parents. I remember how hard I worked to secure the resources and support my daughter needed and how terrible it felt to have it all taken away. “Look how well she is doing,” I was told. “She no longer needs full-time educational assistant support. It’s good news.” As a parent, I was unconvinced. Losing the supports that helped her to be successful seemed like a pretty unfair reward for her finally doing well.
First published in Education Canada, December 2017