No whitewashing. Just tell it as it is.
One of my fans emailed me about one of my last posts, surprised that I don’t whitewash these discussions and am not scared to speak up. Being the mother of an autistic child, I learned early on that I had to find my voice, because I was terrified of speaking up until I learned not to be. That happened over years of being forced into situations where I had to fight for my son. I’m not kidding when I say that I was absolutely terrified to talk to the kind of people I really believed were on a different level than I was, all because of how they made me feel. Until you’re in that situation, you have no idea how many people have fallen through the cracks in our modern world. So many have no voice and have been left behind.
I learned firsthand when my son was diagnosed with autism that obstacles existed, and if I wanted help for him, I was going to have to fight for it. If I wanted peace and no conflict, I could bury my head in the sand and pretend all those biases and problems didn’t exist, or I could have shoved him in an institution for the rest of his life. For me, there was no choice. What is that saying? Feel the fear, but do it anyways. I had to learn to speak up, because I was launched into an arena where finding my voice was my only option. Yes, it came with a ton of doors being slammed in my face, being called the B-word, being trash-talked, being labeled a problem.
But you know what? No matter your social status, the color of your skin, or your gender, everyone has a voice. Some of you may have been told you don’t, but ask yourself, why would someone say that to you? No one should be above the law or have more rights than someone else—even though that’s how many laws have been implemented. It can be exhausting to fight a battle when it seems you’re not being heard. Many of the issues of yesterday still exist because they were shoved in a corner instead of fixed. Out of sight, out of mind.
More problems have popped up because of money. I remember hearing from several of the parents in my autistic moms group who were fighting the government in court. They fought a six-year battle to get funding for medically necessary treatment for all our kids. These parents spoke of the numbers: In the 1980s, it was 1 in 40,000 children. In the ’90s, it was 1 in 2,500. In 2016, it was 1 in 68. Today, it’s estimated that 1 in 34 boys and 1 in 144 girls will be diagnosed with autism. Apparently, there are also hot spots, areas where the numbers really spike and are higher than others. Two countries have higher rates than anywhere else in the world. I honestly had never once considered any of this. It wasn’t on my radar. When questions were raised about the spike in numbers, a few mothers had the financial means to fund an independent environmental study to find the cause, but it was shut down, and no one was allowed to talk to anyone, because those mothers were stepping on the toes of big businesses with direct ties to government.
It can be exhausting to think we’re going backwards instead of forwards, but we’re not. We’re aware that equality doesn’t exist. Did you know that FAS kids get barely any funding because most of them are in foster care? While foster parents and social workers may care, these are not their own kids, and they’re not going to fight battles that cost money and take an emotional toll. This kind of fight is a full-time job. The system doesn’t work for these kids, and the available treatment is very costly. When these kids grow into adults, how many of them will fill our jails?
Then there are the residential schools. First Nations children were taken from their families and shoved into places where unspeakable and horrific abuse happened at the hands of powerful institutions who could do what they wanted. It was overlooked, and many don’t realize that First Nations children are still being yanked from their homes today, from their communities, at the same rate they were during the residential school era. No one in a position of power wants to talk about it. Any studies done are filed away in cabinets and not spoken of, and it’s certainly not going to make front-page news. What you’ll find is a few buried articles. That’s it.
When you fight these injustices, you may feel the fight is just too big. But now, we see people speaking up about so many issues, very big issues, issues you see only when you’re affected by them. Once you do see it and recognize the problem, you start to see so much more. A lot of issues have been tucked away neatly, buried, not to be spoken of, because fixing them would cost someone money.
But at the same time, remember the squeaky wheel? That was one of the things I was told by a mom with an autistic child who phoned me when I was trying to get my son diagnosed. Though she was so very, very busy with her own autistic child, she took the time to help me understand the steps I needed to take. Medical professionals and the resources out there do not give you that kind of help, but she, another mother, gave me a wealth of information on everything I could access to get my son the help he needed, including financial help, and everything she had to offer off the top of her head. She said to me that she never turned her back on a new mom whose child had just been diagnosed with autism, because she had walked the same road before me and had the same obstacles and roadblocks tossed in her way.
We all need someone who has done it before and can give us a helpful roadmap to follow. This mother wasn’t telling me what to do or feel or how to think, because no one ever has the right to tell you that. She simply gave me the information and the tools to do what I needed to do for my son, and one of them was to learn to speak up, to be that squeaky wheel. Honestly, I had never seen the kinds of power plays, systematic abuse, racism, underhandedness, and corruption that happens behind the scenes, because it wasn’t a part of my world then. I had always been told one thing: Don’t make waves, don’t be a problem person, and everything will be fine. Nothing else existed. If you don’t see it, you can’t recognize it, so it’s not talked about and it’s definitely not fixed.
I remember what that mom said so aptly to me. When you’re trying to get your child the help he needs, you get dragged into a political arena in all levels of governments, and the curtain is drawn back, exposing the unbalance that really exists. The games career politicians, institutions, and big corporations play behind the scenes would make your head spin. You learn about things you never knew existed. Social workers are assigned because autism is seen as a social issue, not a medical problem, and they play favorites, where one family gets more. My favorite line, the one I heard too many times, was “If we give to you, we have to take from someone else.” Don’t ever fall for that!
Another thing I had to learn, which that group of mothers taught me, is that there’s a fine line when it comes to stalking, and you’re going to need to toe it with government officials, private consultants, medical folks, and members of institutions and political arenas to get the help your child needs. When I called a consultant to get on her waitlist, it wasn’t a one-time call after which I waited forever for a call back, because that call would never have come. She already had a full waitlist and full client load. As those mothers said to me, call fifty times and keep calling, emailing, you name it. You can’t sit by and wait for something to come to you.
Professional autism consultants, because of a skyrocketing number of kids being diagnosed with autism, are in extremely high demand and cannot help everyone. They are really choosing who to help, and remember that most of these services, you have to pay out of pocket. The parent’s role is to be a part of the team, the team leader, the one doing most of the ongoing work and therapy, so consultants will choose a parent who is going to step up as opposed to one who will sit back and not do anything. There are not enough trained and skilled professionals in this field. Let me be clear, though: There are a ton out there who don’t have the skill but say they do, and they are ready and willing to take your money. In next week’s blog, I’ll talk about that, because it happened to me way back when. Someone took all my money and then left the province.
At the same time, everyone needs the community to help them access the tools they need. I came from a family that instilled in me that I couldn’t make waves or draw attention to myself from the government, couldn’t put myself on their radar or be a pain in the ass—but change happens only for those who won’t take no for an answer. I had to put myself out there, and it was the last place I wanted to be. No one should be scared to speak up, because everyone has a voice, but not everyone can see that.
When I talk about moms groups and the mothers who took the government to court, I have to ask, where were all the men? There were one or two, but by far, men just haven’t stepped up in this arena. We’re in a new world now where many of us are starting to realize that we just can’t keep going the way we’ve been going, keeping the status quo. There is no going back to normal, because what is that? Is it where one class has more rights than another and decisions are made based on what’s best for those who hold the strings? You need to figure out what you need, what your family needs, what your community needs, for yourself. Do your research, and never let anyone tell you how to vote or shame you into believing things can be only one way.
One of the posts I wrote back in June mentioned a $48 million police station my local politicians were sneakily trying to get funding for. Guess what? They got it—during a pandemic! Apparently, the vote was unanimous because only 4.6 percent of eligible voters responded, and they required 10 percent to say no, whereas there was no vote for yes, and to actually vote meant jumping through a lot of hoops. I’m laughing, because how do you respond to something so ludicrous? Evidently, there is nothing better to spend $48 million on during a pandemic than a state-of-the-art police station and hiring more officers.
Have they considered an alternative, like helping a ton of special needs children have a future, or bringing clean drinking water to the many communities where that water has been poisoned by industries or the wells have been drained by developers, or building housing for those with no roof, or giving food to those who’ve lost their jobs? The list will go on. Please add to it. Since we’re in a pandemic, your average folks out there who we count on to be watchdogs can’t go door to door to get signatures and shut down this reckless spending or prevent it from happening. As I mentioned in my post, the council indicated that they had mailed out information on how to vote to all the households through the post office, only I never received it. I wonder how many others didn’t receive it, either. We’re in a housing crisis, a homelessness crisis, a pandemic, with massive job losses and continuing racial and systemic abuse, yet throwing more money at policing and state-of-the-art police stations is deemed the answer instead of actually putting that much-needed funding toward building affordable homes or helping those who need it most. What can I say? It’s frustrating, indeed. Are we going backwards or forwards?
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