I am a geek. This means I study everything. Before I see, hear, eat or participate in anything I try to find out as much about it as I can. This has always been my way of dealing with the unknown and it has worked well for me.
Until I became a mother.
I read lot of books about being pregnant and being a first-time Mom, but there were still enormous gaps in my knowledge. I didn’t realize it until the boys were born that what I should have done is read about crisis management and being cool under pressure. Military history would have been a more appropriate point of reference; those first few weeks, recovering from the cesarean, being home with one baby and having to find time to go to the Neo-natal Intensive Care Unit (NICU) to see the other, felt like a constant battle.
Most mothers of “multiples” feel so overwhelmed they ask for help within the first week of their babies’ lives. I had my husband and mother helping, but eventually she had to go home to the US and he had to go back to work. By then we were in the new apartment and both boys were home and healthy. It didn’t get any easier or less time-consuming.
In hindsight, I would give that stressful time another go if it meant I wouldn’t have to go through the real learning experience of finding out the boys have autism. We have a fairly strong handle on things now, but they will change again, that is the one thing I am certain of.
I have learned quite a lot over the last six years and with autistic children, it basically comes down to four main things:
- Sensory overload: everything is bigger, brighter, louder and more intense when it comes to the five senses. A kiss is a smooch, a hug is a vise grip, Christmas lights are a star-filled night and music on the radio invades every inch of surrounding space. These kids overreact because they are responding in kind to the world around them. That is how it presents itself to them. They cannot tone it down and it starts form the moment they wake up to the moment they fall asleep. This also gives them a very short attention span and short-term memory. You can’t get annoyed if they ask you where you are going for lunch five minutes after you tell them because they honestly can’t remember. By the time you have answered them the first time they are probably already asking about something else they noticed and everything else is forgotten. The amazing thing is they will remember entire conversations and situations for days, maybe even weeks, and talk about them again at some random future date. Timelines don’t mean much to these kids: everything happens in the moment.
- Emotional Overload: because of the heightened atmosphere around them, autistic kids feel everything intensely. The positive side of this constant excess is that no matter how many times they do or see something or someone they love, it is every bit as wonderful as the first time. When they squeal with delight they mean it, when they laugh out loud they are not doing it to make anyone else feel better and when they say something is yummy they mean “YUMMY!” The negative side, obviously, is that sadness is misery, fear is terror, anger is rage and worry is heartbreak for these kids. They are not being histrionic if they call you twenty minutes after you put them to bed and say they thought you had disappeared. They really did, and they were honestly scared.
- They have no shield: these children, for the most part, no matter how functional or adapted they may be, will never truly understand life’s subtleties. Whether it’s irony in someone’s tone or a slight facial contortion which obviously means a specific emotion to everyone else but which they have never seen before, the little details will befuddle them. They think in literal terms. They love order and routine and any change can be anywhere from annoying to mind-blowing. That is why so many of them can’t look people in the eye. Even mothers and fathers find themselves saying “look at me” when they know full well these children feel intruded upon whenever they make eye contact. There is no real distance between them and the world around them. It always feels like the colors, sounds and shapes are somehow coming toward them. They are hyper-sensitive to touch. They like their space and they want to control it at all times. They will learn to adapt, but they have to be taught how, one situation at a time.
So, parents of autistic kids, don’t feel bad if it feels like the thousandth time you have told your son or daughter to not shout so loudly, or not to touch everything which attracts them or tell strangers everything going through their minds. They have no filter. That will be taught how to respond to given situations. Each one will have its set of rules and assigned behaviors. Each conversation may involve repetition of things you have already explained. One day it should click into place and the next lesson will come up. How to use a public restroom, how to talk to teachers, even how to behave in the grocery store, it is all one lesson at a time.
The most important thing is to remember they can learn and you can teach them. No matter how trivial what you are telling them may seem to you, it is all important to them. You are their guide and their protector. No-one else can fulfill that role as well as a beloved Mom or Dad, even when you make mistakes.
Feature image courtesy of Flickr, Thomas James Caldwell.