Advocacy.

Self-portrait of A. & Martin Luther King Jr. by my daughter A.

Why can’t things be streamlined? Why does there have to be much red tape and jumping through fire hoops? Why does there have to be a struggle to get the tools for my children to encourage their potential?

I am just one of the thousands of parents out there who has have these showdowns with school boards, and the government, on behalf of their children. From the time that they were diagnosed, they have been through rounds of tests, speech therapy sessions, drop-in social circles, assessment sessions, behavioral schools and so much more. I’ve attented all of these with them and have done what I think was necessary to keep them on track with their education.

Sure, I’ve had to deal with tantrums, my hell of a post-partum, therapy to deal with my own social anxieties so I can help them, and deal with my own crap so I could be there for them. It isn’t as much of the stuff that they have to face every day and it’s my own stuff to deal with. I am not a victim of my children’s condition.  Anyone who declares themselves some sort of martyr for their child with autism has no sympathy from me. These kids deserve more and they deserve some one that helps. I’m also not going to claim that it has been easy. Like I said before, my life has been a rollercoaster on its own, but I honestly know that my children have enriched it. Without them, I wouldn’t have been exposed to the different ways of thinking and looking at the world that I have with them. Their way of life is thinking and doing and they see every obstacle as an opportunity to make their learning process an adventure. In turn, my children make me see my own potential, whole fascinating worlds in other people and they’ve made me love things with a deeper sense of understanding.

I write here and I write on my own, publish on my own and expose these words because it’s what I enjoy. My children have made me see that even if I suck at stuff that I enjoy, the point is that I enjoy it. We all get frustrated at times and believe me they let me know when they can’t be understood. However, they get through it, they pull through it and some how they find happiness in the little things. My kids get bullied, made fun of and are outsiders some times just like I was when I was a kid. However, the people and children they meet eventually learn a lot about being tolerant and open-minded when it comes to autism. It doesn’t always work to stop the negativity, but the seed of positivity is planted.

I’m getting ready to take them to school and a quick run right after. Then I’m going to armor myself in my “power suit.” Once again, I expect to be given an option to send my littlest one to a different school, an “autism” school. The last one I saw was a great school indeed, but one that had no way of socializing my child to mimic proper behaviors in the world outside. She would not have been integrated with the rest of the school in regular class. She would have been in a school more than half way across the city. My conditions have always been to keep her in a regular classroom with an assistant that would help her get to the point where she didn’t need in-class assistance anymore. A regular classroom has made my daughter understand and learn how to sit in a classroom and do work. She’s slowly learning about other people and how they interact. Her reading, writing and math comprehension levels have been proven to be beyond the levels of her grade, but this is beyond that.

Should I tell you about my son? This socially awkward and poetic mind that just wants to be able to learn to make friends? How his expression of  his knowledge of history, science and what makes the world fun gets blocked because he won’t look you in the eye?

When my son and daughter finish their education, I want them to have the tools to battle that social world they have a hard time trying to understand and I want them to be able to just go to the store across the street and get some milk if they want it. Is that too much to ask?

Well, I forget sometimes that I live in a place where the education system is poorly funded and thus it is poorly run at times. There are a hundred people trying to change one lightbulb and as they try they fail to realize that they bought the wrong bulb voltage. The system needs to change because this “no child left behind” policy isn’t doing its job. The only reason my kids have what they do in school is because I speak for them, as many parents try for their kids.

I got up at 4:51am to go for my run and instead my body decided to have a panic attack; one of those “I’ll lie on the floor until the world stops threatening to explode” panic attacks. It’s better now since there is comfort in my routine of dealing with morning tantrums, getting lunches ready, serving breakfast and getting laundry started before taking the kids to school. I’ll escape by sprinting through my damp and rainy city streets. Maybe I’ll imagine I’m chasing a giant dinosaur.

Forgive the grammar and the sentimentality, I’m writing in a rush and the world is a little too much right now. We all get through and we all have our battles of varying degrees. I wish you luck on yours, even if it is just to get milk across the street.

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