And it confirmed how I’m not equipped for the planned Autism Hour at the Aquarium today. Plus they only want autistics and their caregivers, which would mean leaving my other three children at home so it was already a no for me. But the main reason I didn’t want to go is that I get emotional. The thought of being surrounded by a host of only autistic children and careworn, loving parents or caregivers made me cry. And that was just the thought! I know what it’s like living it and other special needs day by day. To see those little ones and their caregivers would break my heart. It’s not only living the current struggles. It’s also knowing that you will always be caregiver. As much as people say they don’t want a “cure,” when your child can’t yet communicate, or when their autism comes with OTHER problems like cerebral palsy, or if they are a danger to themselves, I do. I would love to cure the things that make life scary or difficult or dangerous.
Yesterday, some families came with their autistic children. We had to wait a while before the march began and it became difficult to keep some children safe. One kept running towards the road. Another one got out her specialised wheelchair and caused a ruckus. It’s HARD. And seeing them brought tears to my eyes.
One lesson -Don’t go to an autism march alone if you’re not an extrovert!
I just had to take this photo. The stereotype about Coloured males is probably like that of African-American males. Gangbangers. I loved this.
It was organised by Autism Matters. The aim is to ask government to build more schools, to facilitate OT, speech and Physio. Let me step in there. I tried to use government OT for my son who has what used to be called Asperger’s (along with global developmental delay, auditory processing Dirksen, speech issues…) The OT said she’s used to “severe autism cases” and didn’t “know how to help” my son! And there was no speech therapist as the government had not assigned one yet! Useless!
They (We?)want jobs for autistics, inclusion in decision-making, transportation services… Respite care and permanent care for adults 😭💔
Honestly, with our extremely high unemployment rate and so many of us living on government grants already, I don’t see how they would afford this. They haven’t even fixed normal rural and township schools. Children are still drowning in pit latrines or having school in buildings with no roofs or windows. But it’s worth a shot. Our children deserve it. And we too deserve respite care. One of the organisers was telling me how I can’t be homeschooling these children and not getting a break, a time to breathe. To not stress or worry or be supervising. A time to relax. It is what it is. I have no sister to help me. No friends to take them out for a day or to stay with them for a day while I go out. My dream would be to go for a relaxing massage.
It was a short march. Just over a kilometer. Didn’t meet many people on our route but we made sure the ones we met knew what we were about. The racial composition was interesting to me. I think I saw only one other Black person who might have been a parent. He too was alone. The other Black people were Autism Matters and Autism Western Cape ‘employees.’ The majority were Coloured and Muslim. As for the White folk, I don’t know if they don’t NEED these services by government because they can all afford private schools and therapists, or if they don’t care. They certainly do march, they marched to get rid of our one president… There were none at a workshop I attended either. Most parents came with family. My husband was at work and then going to take grocery to my parents during his break so I couldn’t go with him. And taking my children would not have worked. It would have been stressful. And, I have no friend I could have asked. They’re all either sick too, or working. I’d taken pain meds for my post-op pain, so my back didn’t scream despite first standing around for a long time before beginning.
We handed our memorandum over after a short walk/ march. And that was that. I was scared there’d only be like five people there. I didn’t want to look silly. 😅 Thankfully, the family members made up for the low turnout. This March happened in the other provinces too, timed for the same time.
I’m an introvert, so I people -watched. Plus I honestly don’t know how to just break into groups of talking people who all know each other and especially those who are family. But I did get to ask many if I could take pictures.
Would I do it again? Maybe. But only WITH someone else who I know.