I love my son. I hate being an advocate.
The activism and advocacy part of this journey is something I never went looking for. And as much as I would never want to change my child, I would gladly give this part up in a heartbeat. With every choice I make, my intention is always in the best interests of him.
Advocacy was something forced upon me or maybe I stumbled into it. I didn’t suddenly wake up one morning and decide I’m going to spend hours every single day fighting for basic human rights. I didn’t decide that I would prefer to spend countless hours researching United Nations Conventions and laws applicable to where I live, instead of spending quality time with my son.
I didn’t choose to become a speech therapist, an occupational therapist, a psychologist, a nutritionist, a food therapist, an administrative assistant, a financial planner, a teacher… all self-learnt and without the benefit of years of professional studying and training. All I wanted was to be a mummy.
Unless you’re in our shoes, I’m not sure that you can totally wrap your mind around the fact that being a parent of a child with special needs is tough. And depending on where you live, it can be even more difficult. We wait 15 months or longer for an appointment to diagnose. If we choose to pay privately, we pay in excess of US$1000. There is no publicly available speech or occupational therapy. So we have to pay at least US$50 per session. There is a special needs grant of approximately US$120 monthly. But your eligibility is determined through means testing. So if you have a job or own a house, you are not going to be approved. Disregard the fact that your job is less than minimum wage. Disregard any of your expenses. Disregard that your house was inherited and is little more than a roof over your heads.
We have to hope that we can find a school willing to accept our children and then be faced with the criticism that our children are “disobedient and lack discipline” when the reality is that they are misunderstood and few are willing to go the extra mile to care.
We watch as our children are ignored by “friends and family” who think it’s too much trouble, so they don’t invite us to parties or outings. And then we try, often without success, to pick up the pieces of their broken self-esteem and help them glue those pieces back together.
I’m not frustrated; I passed that stage a long time now. I’m not angry either; it’s a wasted emotion that doesn’t change or improve anything. I’m tired: mentally, physically, emotionally tired! I want to be able to play with my child and spontaneously go to the movies… not plan a half hour trip, 2 days in advance because I have to think what time will have the least people and there won’t be as much noise, but it won’t be very bright outside because it will hurt his eyes and will there be anything that he will eat or is the cinema out of stock of plain cheese pizzas? And trust me when I say that being out of pizza will lead to a meltdown.
There’s my vent and rant of the week. The people who are on the same journey will understand what I’m saying. The people who have not stepped into my shoes will likely scratch their heads and think that I don’t care about my son or I wouldn’t say these things. Some may try to understand and I’ve always believed that if I am able to reach just one person, that counts as a victory. Now I’ll go back to my son and continue to try my best to make this world a better place for him.
Photo credit by THW 💙