Guest Post by Anonymous Parent
We recognize that this post will be hard for some to understand. Before the pandemic, some families were in crisis. What has changed for them is that it’s become even harder. The words below are not the opinions of BCEdAccess necessarily. We believe this parent needs a voice.
trigger warning: describes detailed physical aggression
Today I feel tired; exhausted really.
I feel defeated
I feel alone
I feel vulnerable
My husband and I chose to have children, we have three. The first was super easy, the second not as easy but easy and our third has been putting us through our paces since the day he was born.
Our youngest has PPD-NOS, GAD, ADHD, LD, PDA, Language disorder and Trauma.
From the time we noticed that my 2nd son was loosing his language, I have been advocating, fighting really, for services. First it was funding for early intervention and respite, then it was meaningful inclusion in school and learning, then it was acceptance and respect, then it was mental health supports, and now it is adult services. It’s been 19 years and I’m exhausted, not sure how I’m going to manage for the next 100 years – yes that’s right, I have to figure out how to stay alive until my children reach old age and pass.
I’ve never given up on my children, though it has been suggested that I do so. First it was he can’t talk so he can’t learn, then it was he can’t read past his dolce words, so give up on reading, then it was he’s too aggressive, medicate him or the best one is, you can’t live like that put him in a group home, have someone else look after him. Oh, I forgot, if it is really difficult you can hand him over the hospital.
Really, that is the best answer I can get, that is what people think and these are the very people that believe in inclusion.
So, what is the issue? That’s easy for me, we talk a great talk, but we don’t walk it. We only want the more abled of the disabled. That may sound crass, but that is the reality. Service providers are there for their bottom line. CLBC is a massive crown corporation that is given a certain amount of money, but I’m amazed at the number of people that touch my children’s files. They have checkers upon checkers upon checkers and I’m shocked at the amount of money wasted on bureaucracy. CLBC has some great people, but it is failing our community.
The issue is that there is no money; there is no expectations; society doesn’t want inclusion. If you are over the age of 18, then anything that you had as a child slowly starts to fade.
In the last 18 months, we have had to call the police approximately 8 times; that is all I can remember or that I have cards for, it may be more.
Why, because my son has blind rages. We have asked for help, so many times, from so many people that I truly believe families like mine are being swept under the rug.
I have been choked, smothered, punched, slapped, kicked, hours of yelling and had items thrown at me. Last night was particularly bad, I received three blows to the head and had a phone thrown at me. I am a victim. I don’t consider my son violent, though this is a term that is used to describe him. I’m not afraid of him, though I’m told I should be.
I’m a victim of circumstances, a victim because there was lack of understanding of autism, a victim of the lack of funding needed to support my son, a victim of down loading, a victim of “we know best, you’re just the parent” a victim of segregated service providers, a victim of society that really doesn’t want to know about me or my family.
So why is he like this? He is communicating; he needs help but because all of the diagnosis he has, yet we haven’t been able to find help for him in the adult world. We finally have the expertise that could help my son, but there isn’t enough money so advocate to get it fully funded. How much abuse do families like mine need to take before we are properly funded?
In 2003 the ratio was 1:350 today the ratio is 1:39. I’ve been saying for the last 19 years that we need to get in front of this, that we need to get ready because these children will be adults.
I’m here in the adult world, and no one listened. CLBC isn’t ready, the medical profession isn’t ready, mental health isn’t ready, employers are not ready, service providers are not ready. Society is not ready.
The police are my mental health team. They are who I call when I need help. What will they do in 19 years when there are 1:39 adults and there is no support for our adults leaving the school system.
It’s a lovely day outside and I wondered around my garden trying to focus, but couldn’t. I wanted to garden, but I felt lost.
What will tomorrow bring for me and my family.
Today we are tired; exhausted really.
Today we are defeated
Today we are alone
Today we are vulnerable
We are scared about what tomorrow will bring not only for our family, but for every family that has a child that will turn 19 and there is no money, there are not resources, and parents (moms) are being abused by their grown children.