As more and more institutions begin to look at diversity as a part of their plans for inclusion, it is hard as a parent with a neurodiverse child to untangle who or what the language of diversity is speaking to (often LGBTQIA2S, BIPOC and Indigenous) and how to find ways and resources to support our children and ourselves. The equivalencies between diversity and neurodiversity include access to community and supports and equality.
A class that is “open to all learners” might suit some diverse learners, but not necessarily all learners.
Not to stir up trouble for schools or teachers, but some students remain unseen, their needs unknown, their teachers and helpers and the work they do often unrecognized by the district and other teachers. Families with neurodiverse children—because they have Downs Syndrome, are on the autism spectrum or have other rare conditions—tend to be unseen or unconsidered. While there may be occasions for other diverse children to form community within the larger school, often special needs kids and families are separate, not celebrated in their schools for the additions they make and the insights they offer. They are often not a part of the larger school community and can be seen as people who have needs and are, in a sense, a burden.
A shift in thinking could allow them to be seen for the complexity of their lives, the strength of their perseverance, and what they can offer in the way of diverse ways of being in the world.
My son has a rare genetic condition called Prader-Willi Syndrome and is on the autism spectrum. He is relatively non-verbal and will not likely catch up to his peers in his academic abilities. That said, he can read and loves music, he is curious and understands everything that is said to him even if he doesn’t yet appropriately respond. He has a sense of humour and loves people.
Though there are resources for neurodiverse kids, accessing them and advocating is done by family members. Advocating feels much easier and straightforward when our children are little. From preschool to elementary, teachers and staff work to include diverse kids, because their differences, though present and real and outstanding, don’t seem as immense. Parents of kids in this age group can be hands-on and speak up, attend meetings, and be at the school observing and helping. Teachers, for the most part, are accustomed to parents of small children advocating.
That said, some experience discrimination—“if your son is in my kindergarten class, we will not go on any field trips.” Imagine a teacher saying this? I know that neurodiverse kids are not the only ones to experience such discrimination.
As neurodiverse kids move through school, the gap between them and their peers grows, and they become more and more isolated from the larger community that they may very much want to be a part of.
Advocating as a parent for a middle and high school student can be trickier as expectations shift from parents to students. High school can present a shift to a more adult approach for the kids. In some ways this can be good and in others quite scary; as a parent how do you know what is being expected of your child at school?
I sometimes feel uncertain if I should step in or not. As his ally and advocate I must navigate this uncertainty. If teacher’s underestimate what my son can do, he will get bored but won’t ask for more challenging material. But when I push for him to be offered more academics, it must also seem to teachers that I’m asking for work beyond his ability. One solution is to ask an external expert to visit, such as a Behaviorist.
Parents want to find that balance between supporting independence and autonomy but also inclusion and a proper education. You may want to know that your child is being pushed, is learning, is doing academic work and participating in school culture even though they are neurodiverse and would sometimes rather be on their iPad. You want kindness and you want the teacher to have expectations. You don’t want to hover, but you want respect for your son or daughter.
Ideally, my son would be included and seen by all his peers as an equal student in the class, a valued member, a student worth making some adjustments for even if it is hard. In middle school a boy in a higher grade came to the special ed class and invited my son to join a lunch time band session. My son loved this. The more expectations are placed on him to do things, the more he can do. I believe the same could be true of inclusion: the more inclusive we are, the more easily we are inclusive.
If the number one priority is to teach all students, what are the results of that for everyone? Often the argument of accessible sidewalks is used; if sidewalk designs allow for wheelchairs, all kinds of other users benefit—from parents with strollers to delivery people. I wonder how that might work for neurodiverse kids in school.
