Tuesday, April 30, 2013

Life with a child with autism

April is autism awareness month. I will tell you what it is like having a child with autism.

Every morning we wake up and eat the same thing for breakfast. Even if he is sick or not hungry, the food has to be put onto the table with chairs up to it and all proper looking. Unwanted food is dumped on the floor, thrown across the room, left in another room, or when he is being nice abandoned. Abandoned food does not mean he is finished eating though. Food removed when abandoned, but he was hungry will lead to tantrums, attacks, and food getting dumped.

His days are spent emptying kitchen cupboards, emptying bookshelves, emptying bags of chips or flour or any food that is left out to be danced in and on. My days are spent eternally cleaning. I clean up the broken glass of the nice teapot then go clean up the dirt that came from the house plant that is no longer with us. I re-fold laundry, re-wash everything.

When he is sick I get a break. He will only want to lay around, snuggle, and watch movies. At those times, the only messes are bodily fluids. Then his sister gets sick. By the time I get sick he is better. So the house is trashed worse than usual.

Having a child with autism is a great form of birth control. I don't know if I can imagine having an infant around my child. I can't imagine the infant staying safe around him. He does not do well with most baby pets. He has the curiosity of a 15 month old that is newly walking, but the physical reach and power to move chairs and climb cabinets.

Many of my friends have large families (5+ children). Most of them do not have special needs children. The ones that do have special needs have some physical medical conditions. They might require expensive medical surgeries, but there is no question that the child will be able to be a normal part of society. They will someday move out. They will be able to hold down a job. They won't be looked at and pitied.

The larger families I know with children with special needs have less severe disabilities. When their child no longer qualifies for government paid services and they get angry because their child has progressed so much in the last 6-8 months when they had service. No longer giving this to their child is not 'fair.' But what is fair?

I just wish my child would call me mom. I wish he would call anyone mom. I wish requests from him were in sign language, picture cards or on an electronic device. Instead my requests are getting a cup shoved into my face (that means he wants a drink). If I am ignoring him and working on school, requests will be in the form of him grabbing my head and butting my face with his forehead. That sounds cute, but its painful. I end up with black eyes, scratches, bruises, and more from him. I usually end up taking tylenol or ibuprofen at least once a week for a headache that was from trauma. I have scars on my arms from where he pinches when he is upset or in pain.

We purchase extended warranties for everything we buy. We usually have to use them as well. Most people purchase a $500 laptop and expect it to last a few years until they want to upgrade. We expect it to be broken at least 4 times a year. Keys will be ripped off, water/milk/whatever will be spit onto it. Our laptop before this one we sent in for repairs probably 6 times in the first year. Most of the things breaking were not the manufacturer's faulty device. It was accidental damage.

We get kicked out of the movie theater at the matinee showing on a weekday because he has thrown a shoe and we cannot find it. We can't go to sit down restaurants because it takes too long for food to show up. And its noisy. The lighting is different. The food is different. He will soon outgrow the high chairs that we use the 2-3 times a year we try to go to a restaurant when we visit family of they are in town.

There is more, but that is just a small idea of what things are like in my house. Its exhausting. Painting my nails is a way I take care of me. It is a way I can still be feminine unlike the scratches, bumps, and bruises. It forces me to sit down and do nothing for 10-20 minutes while my nails dry. It is rather inexpensive, and the supplies don't take up much space. It is a good fit for me and my life.


  1. Thank you for sharing this sad and touching glimpse into your world. I have friends who have children on the autistic scale, and they have told me similar things. I cannot imagine how difficult life is for you. I'm glad that through it all, nail polish (such a small thing) can bring you a bit of comfort and joy. <3

    ~ Yun

  2. Oh my gosh, this is emotionally heartwrenching to read, but thank you so much for putting my own problem into perspective. I'm so glad you've found an outlet by way of painting your nails and that it can be an escape for you. More than anything, I am hoping that things will get better <3