I have special needs and medical complexities including epilepsy. I love school so much. My Mummy spent a lot of time researching schools with good inclusion and low roll numbers to accommodate my immune-deficiency. I had only been at school full-time for a few months when we first heard about Coronavirus, and then I stopped school.

Preparing for Lockdown as a Child

I didn’t really understand what was going on but suddenly my careworkers stopped coming and everything changed for me. I had to wear the mask I use on the plane every time we left the house and no one came over to play anymore. I missed my whanau and my caregivers so much.

The Emotional Toll of Social Distancing

Mummy wouldn’t let me go on the playground even though I could see other children playing there. We had to stay on the grass by ourselves. I didn’t mind. I just called out “Hello!” and “My name is Eddy!” to people who walked past. Mum stopped driving so my aunties and grandparents started dropping groceries outside our house. They wore gloves and masks and looked pretty scary to me. I still wanted to run and hug them but I had to stay inside while Mum wiped everything clean and washed our food carefully before it came in our house. She seemed sad that the food for my special diet was often not at the shops.

Online Learning Not Accessible, No Alternative 

Then Mum said we were going to do school at home from now on and my teacher would send me schoolwork to do on the computer. She seemed pretty worried about that too. I liked watching the videos and playing the maths games online but it made me very grouchy later and I felt like screaming a lot. So I did. I screamed really loudly. Lots. It made my baby brother cry too and I felt bad but I couldn’t help it. My brain hurt. My eyes were tired and my head felt sore. I started to feel sick and then I started to feel anxious. When I feel frightened and I want to vomit I know I am going to have seizures in the night.

When I woke up Daddy was asleep in my bed and lots of my sheets were hung up drying all over the house so I think I was probably quite sick in the night. Mummy and Daddy looked very tired and didn’t want to dance with me at breakfast which made me feel sad. We did another day of computer school and it made me feel even worse. I was very shouty and stumbly, I kept bumping into things and falling over. When we went for our family walk I tripped over my toes, cutting my elbows and knees, and knocking my head on the ground. Mummy and Daddy said I was very brave but I cried and cried and found it hard to stop.

I was so scared to go to bed that night. I knew I was going to have seizures and I think Mummy and Daddy knew too. We stopped computer school after that and then I started to get bored again. I miss my school friends so much and I miss learning. I miss my careworkers and teacher aides too. I wish I didn’t have epilepsy and my parents had more help. They seem even more exhausted than usual.

 

Call for Accessibility Legislation

I would like to see the introduction of Accessibility Legislation so that families like mine don’t have supports removed in a time of crisis. Careworkers and digital distance learning has been completely inaccessible and placed a heavy health toll on my family. If there is another Coronavirus, it would be better if the government could look after those with extra needs first, to make sure they can stay safe too.

 

This is my access story, it is one of many. I'm sharing it because I want a law that puts accessibility at the heart of an inclusive Aotearoa New Zealand.

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