"That" mom...

 Yup. I've been warned. "You don't want to be that mom..."

Well, it's that time of the year again. Most parents are excited about the prospect of getting the kids back in school, either out of sheer desperation to get them out of the house, or back into some kind of more predictable routine.

But, when your kid has got any kind of difference, additional, or special need, you may just find yourself welling up with tears over the anxiety of yet another school year. Another set of educators to educate about your kid's condition. Another attempt to navigate a system that often isn't the friendliest to your kid's needs.

Our kids' "needs" involve accessibility and equity in order for them to do what the rest of the world wants them to do anyway: fit into a mainstream school system so that they are not too much extra of an expense, and less of a "burden to society" (yes, at least one clinician told me that, upon receiving cochlear implants and being mainstreamed, my son would be a contributing member of society, as if his value depended on it).

Our education system, although filled with many wonderful, well-intentioned educators and support staff, has been crafted, much like our society in general, on years upon years of ableist ideals. Don't worry. If you aren't yourself "disabled" or support anyone in that category, I don't blame you if you don't get it. And, I understand if it hurts to hear. But many of the problems in supporting children with "disabilities" exist due to able-bodied blind spots. And, as soon as you become an "able-bodied" parent to a kid with some kind of condition or special concern, you get an eye-opening crash course in how deeply rooted ableism is in our society.

So, if you are a parent to a kid(s) with a difference, I sincerely hope you are feeling new school year butterflies.

I can't count the number of times I've heard parents of kids in the hearing loss community ask questions like, "My kid is entering the mainstream school system; is there anything I should advocate for, for my child?" Or, "Should I give the educators any information on my kid's hearing loss?

In an ideal world, you "should" be able to confidently drop your kid off and know they will be honoured and acknowledged, and supported for the people they are, with open arms and a willingness to support them in their quest for basic education and friendship.  But, the reality is that their journey will be nuanced and if you are prepared for it, you can help to minimize the the additional challenges they'll inevitably face due to their exceptionality. And, the reality is that we're up against a fair number of challenges.

It's important to take a moment to acknowledge that I offer words from my experience, which is framed through the nuanced lense of my existence: The city, province, and country in which my family lives, the privileges of the communities to which we belong, and the blind spots to which I cannot speak. And, of course, there are as many opinions as there are experiences, but I think despite this fact, in general, it's safe to say that "our" schools (and therefore, our communities) can be doing more to support the basic needs (and rights) of marginalized populations (disabilities and beyond!). Suffice to say, we can do better.

One of the positives in our modern communities, is the widespread acknowledgement that the nature of humanity is diversity (although, I'd venture to say that the school system has work yet to do on that front as well). Whether that presents in the form of what you can see (physical differences/disabilities) or what you cannot see (invisible differences/disabilities), everyone has a place in our school system. Perhaps it is important to clarify here as well -- not only does everyone belong in our school system, but that is precisely what is desired by governments that wish to reduce spending on demonstration schools or programs, or special services. Anyone who has a kid with a difference, I'm guessing, has had clinical conversations alluding to this (I know I did).

Of course, inclusion is desirable. Parents of kids with a difference want their kids to be able to go to their local school. To play with local children, and to be accepted on a basic, human level. Our kids want to feel like any other kid.

The problems arise, quite obviously, when we shut down demonstration schools and reduce funding on programs, services and supports, without investing in any extra resources, training, education, or services and supports for our mainstream school system.

Teachers nowadays are being asked to honour many different conditions and needs in the classroom, without any required training or specialized education requirements or support services to do so. They have large classes with multiple types of needs. In many classrooms, the highest needs students somehow even go without the benefit of Education Assistants, who not only can serve multiple students, but are often the key to ensuring that those high needs students feel welcome, safe, and like they belong, therefore setting them up for success in the mainstream.

This creates an environment in which the most well-meaning and skilled teachers burn out or give up maintaining the high quality classroom for which they were once known. At worst, it means that some teachers really don't care about what your kid needs in the classroom, and anything beyond average is treated with contempt.

Even with the absolute, best intentions, every person, including educators, has blind spots. As a hearing parent to a deaf child, I have blind spots. It's so difficult to get things right all the time, or even to make things right when you've got little in the way of support behind you.

What isn't so obvious is that ableism is systemic in our culture, and therefore, in our schools. Hearing people, for example, generally don't get why their opinion that it is better to be able to hear, is problematic.

In life, there is what we think "should be" and there is reality. And, the grasping at all the "shoulds" causes a lot of pain, and often, to other people as well as ourselves.

Kids with hearing loss should all be in a Deaf/HoH program. [why?}

Cochlear Implants should be able to fix hearing problems and children who have them should be able to hear quite well since they often speak just like hearing people do. [not always]

Hearing loss should only be about communication. [it never is]

If you don't think that ableism is systemic in our education system, consider these scenarios, with Deaf/HoH kids as an example:

• Deaf/HoH children make their way into an auditorium and are each hooked up to the FM system to be able to hear the primary speaker. A play is then put on, in which the children participating use no microphone/speaker system.
  
  
• A school fundraising event acquires prizes for the school population, which includes a myriad variety of children, including Deaf/HoH kids. [Why is the top prize in-ear earphones?]
  
  
• A special education advisory committee exists to encourage parent input on topics related to special education. The definition of special education includes various populations of kids with numerous conditions, or disabilities. The definition also includes giftedness. Of course, a child can have a special need and simultaneously be gifted, however, giftedness alone most certainly doesn't represent a marginalized population, which the other populations most certainly do.

Drawing awareness to these types of shortcomings is not intended to point fingers. But if we don't acknowledge systemic ableism, then we cast a "blind eye" or "deaf ear" to our clients: our children. We simply cannot serve them well in the current climate.

Over the years, I've become an outspoken advocate for children with hearing loss. That advocacy began by my advocating for my own son. But strong advocacy isn't born out of ease and comfort,  rather, it's born from years of adversity and struggle.

In preparing for my son's years at school, I regularly put together a package of information for educators in his mainstream classroom setting. These materials include an introductory letter from my husband and I, a quick list of things that help him to be independent and successful in the classroom, and a presentation that both educators and his peers could watch to help them understand his hearing loss, technology, and best ways to be successful. Cognizant of people's time, I have always been attentive to brevity, while keeping things informative. And I always put myself in the place of a teacher, who would want to know the person in front of them, and how to to serve that student best. It's also helpful to know that many of the accommodations for hearing loss are beneficial for all kids to be able to focus better in the classroom.

I quickly learned, however, that teachers, like everyone else, are different people. Some are magical and care to learn about the person in front of them. Some do not want the slightest budge outside of their comfort zone, or to go beyond basic level expectations of their duties, as mandated by their governing bodies.

I've tried to minimize educators' "extra" work. I've always been very prepared, and helpful. I've made access to information extremely easy. And, most important, I've never expected educators to at first understand my son's condition. The one expectation I have is a willingness to learn and work with us to make the learning environment work for him.

Over the years that my son has been in the school system, we have had a mixed bag of experiences. A couple of educators were phenomenal. Consummate professionals. Teaching to the child in front of them, and learning about the nuances of his condition and personality as they went, adjusting along the way. Some educators have been reluctant to use his accommodations for various reasons, ranging from their perceptions of what was really necessary, to misunderstandings of what a child with hearing loss should actually be like. Some teachers have told my son that he exaggerates his condition. Some have told him what he needs or doesn't need. One even told him that he doesn't listen. Some have yelled at him directly with the FM system on.  And, he has even had a mixed lot of teachers for the Deaf. Some who really, really get it, and others who really don't even fully understand hearing technologies and how they work, let alone the various outcomes and implications of the condition.

So, over the years, I naturally progressed from happy to help, to staunch advocate that is happy to help. And in that time, I've also heard quite the variety of thoughts from educators on my efforts:

• "Sometimes, the more prepared you are as an advocate, the more resistance you'll meet."
• "You don't want to be that mom..."
• "You'll just be another parent that wants to speak to the teacher about your kid's needs."

I know I am sometimes perceived as tenacious in my advocacy. I may even make certain educators cringe with discomfort. But I also know that children with hearing loss are widely misunderstood. Many are lumped as behavioural cases because the nuances of hearing loss are ignored or never discovered. I know that my son's academic outcome would be even better if our education system were truly accessible and equitable for kids with hearing loss.

So, while I may be perceived as a nuisance, for now, we have to take it year by year, tending to my son's needs as they arise, in an environment he wasn't quite designed for. I will continue to be a thorn in people's sides as long as it is necessary for me to uphold his right to an accessible and equitable environment for learning.

The phrase, "that mom" was born out of a modern climate of privileged people avoiding any discomfort for their snot-nosed privileged children. The people who refuse to engage or take responsibility for their children's behaviour or learning, and refuse educators any jurisdiction for the same, are the ones responsible for the creation of the moniker. But children with disabilities are not privileged in the classroom. It's a given we all need to work with our kids to take responsibility for their behaviours and personal development, but respectfully and thoughtfully advocating for a kid with a disability to ensure proper access to equitable education is not being, "that mom (parent/guardian)." Actually, it's the definition of an engaged parent. You are that mom. And, you are are a thorn in the side of the complacency of systemic ableism. Don't let anyone ever try to convince you otherwise.

If you choose not to actively advocate, there's a chance that no one else will be checking in on your kid's needs, either. And you are choosing less accessible and equitable education system for all, because, without your advocacy, it's not just your kid that's losing out, it's every kid with hearing loss.  Without your commitment, you are enabling the cultural landscape of ableism in our education system to persist. We can change minds, and we can change that landscape, one child with hearing loss at a time.