My Life with Autism

Today MLWP is pleased to feature our second guest post, written by blogger and mom Melissa M., about her experience as the parent of an autistic child. Please check out her blog, Lissa's 3 Girls.

How is my life different with Autism? Everything is the same, yet so different. I have 3 girls. My two oldest are 11 and 9 years old and are called “Neuro-typical” (NT) children in the Special Needs world. My youngest is almost 5 and has Autism Spectrum Disorder (ASD) and Sensory Modulation Disorder (a common side effect of ASD). I’m by no means going to compare my older children with my youngest. But in the last year, the one thing I’ve learned about ASD children and NT children is that there is no way to compare them.

Melissa's 3 girls!

We’ll start at the beginning of the day. First thing is waking up. Every kid loves to wake up right? My two oldest need to be coaxed out of bed every morning, like most other kids. My youngest, is always happy to see me. The first two hours of her day are always her best. She is aware, talkative, always ready to cuddle, happy, and ready for the world. With ASD there is always a schedule or routine to follow and the morning is no exception. There is actually a reason for everything.

The routine in the morning is: take her diaper off. Potty training won’t come for a while for her at night and I’m thankful she is trained during the day. Getting dressed is next and is usually a challenge because of her texture sensitivities. She is sensitive to fabric textures, the way clothes fit (she likes them tight), and prefers dresses with legging for some reason. Shoes are a miserable experience, she doesn’t have the fine motor skills to put on her socks but she can do it with help.

Then comes hair brushing, which is getting easier, but sometimes I have to still pin her with my legs to get just the tangles people can see because brushing her hair hurts her head. Then comes breakfast. Our food choices are limited by the amount of time we have left to get ready, so it usually just depends on her. Breakfast has its own ritual; for example: she loves Cheerios, she needs a bowl with cereal and a very little splash of milk in the bowl, a spoon and then a separate cup with milk in it so she can pour herself. Every bowl she has is like this and if it isn’t, she will cry, scream and sometimes get very aggressive.

Why not eat first? Because food is the greatest reinforcer that caregivers use, besides praise, to get someone with ASD to do pretty much anything you want them to do. A proper reinforcer is not a bribe. In my opinion, these are payments for a job well done. We don’t only use food, we use praise, “high fives”, thumbs up, and even toys. I am also teaching her that if she does a good job, she will get payment in return. This is a great concept to teach if I ever want to teach her about employment in the future. Everything we do is followed by reinforcement.

All the time, I’m talking her through all the steps to do all these things. I break them down into the smallest steps because she still just doesn’t understand that to put on your socks, you have to point your toes, pull the socks on, pinch your fingers and then twist them until they feel right. She will just fumble around her toes get frustrated and scream. Oh, and I must not forget to mention that she doesn’t like to be corrected. Most of her aggressive outbursts come from someone correcting her and she gets angry. I’m not sure if it is at herself or us because she can’t tell us that yet.

Once off to preschool for the day, she works on “normal” preschool stuff like colors, letters and numbers, but there is so much more important stuff to teach kids on the spectrum. For example, looking at people when they are talking to you, learning how to make friends, playing with peers and so much more that kids just don’t understand how to do on their own. My daughter has Speech Therapy and Occupational Therapy at school also. We supplement Occupational Therapy through our regular insurance so she receives 2 hours a week of each. The Department of Education will only pay for so much and sensory issues are not considered as an educational necessity, but that is a whole other story.

Taking her to a department store or grocery store is always really fun. Just running in for a second? For us, we need to make sure we know what we are getting and make it 20 minutes or less. My daughter has sensory issues, which means that all of her senses are either over-active or under-active. In some cases, kids can listen to loud music and it doesn’t bother them. Some can fall and it doesn’t hurt. She, on the other hand, is completely different. Over-stimulation of the senses is a difficult concept to grasp. Ever been somewhere that was too noisy? Too bright? Smells bother you? Does the fuzz on the TV bother you? Fingernails on a chalk board?

Just imagine walking into the brightest room you’ve ever been in (being almost 5 years old and only able to talk like maybe a 3 year old). Hearing the noise of the lights (yes, they make noise) and 20 refrigerators or freezer motors running. Colors everywhere, and trying to listen to your mom. Still acting like a 4 year old trying to look at everything and just being so overwhelmed you can’t control your need to run away and hide.

I try to stop her from running away by taking her hand or even grabbing her arm, but that is just another sense that is overloaded now, and the only thing she can think of to do is scream, run, or even hurt whoever touched her. At this time, she changes. She goes into her own little world. She can’t communicate and sometimes loses the ability to talk. She doesn’t listen and tunes everyone and everything out. I guess this is how she turns off all the stimulation she gets.

We have got our daughter to the point that she doesn’t become over-stimulated for about 20 minutes. Sometimes we have more or less but we’ve really become efficient at getting things done in a short time. Don’t get me wrong, we have good days when there is this perfect storm of happy circumstances and she does amazingly well, but let’s get real. I never remember the “normal” times very much.

After we get home, we have some down time. She usually just zones out on a movie or something. Sometimes she goes and plays with her sisters, but that is hard for them because she doesn’t understand the rules of the games. Her sisters try and teach her how to play and she easily becomes frustrated and cries, throws the toys or even hurts them.

Once we sit down for dinner, a whole other set of battles start. First, all of the (sensory) stimulation throughout the day just doesn’t go away, it just stacks up and up. Her body becomes anxious to more stimulation, even though she doesn’t have Attention Deficit Hyperactivity Disorder(ADHD). When she is like this, she looks like she does. She can’t sit still. She tries to sit and attend, but just can’t quiet her body down. Now, we are going to sit her down and make her put food in her mouth. Yeah, this is just as fun as it seems. But food is one of the best reinforcers that we as caregivers have.

I TRY to have at least one food that she will eat at dinner. It doesn’t always happen and don’t give me the “she’ll eat when she’s hungry bit,” because really she has and will starve herself. She is better with food now but for at least 6 months we tried it and she would only eat breakfast, that’s it. She gags when eating most foods because the textures bother her. We’ve actually tried to make this a “normal” thing for her as she will probably do this for the rest of her life. She copes with it by covering her mouth or plugging her ears – hey it works, right? She has always been thin and I think a lot of it is because her body moves so fast and she is burning all the calories she puts into her body. So, I use the one food she likes to get her to sit. While she is there, I attempt to get her to try new food, always using the one food she likes as a reinforcer.

Once dinner is done, she has some more time to play, and then we do the bedtime routine. We have a strict schedule of events that happen every bedtime and it works. My husband is in charge of that one piece of her schedule and I can do it if needed (when he is away on business), but prefer to give myself some time off and him some time with her.

I would love to mention a couple of things before I’m done. My daughter is on the higher functioning end of the Autism spectrum. She will grow up, probably go to college, and live on her own. She talks, gives hugs, she is sweet, she plays, laughs, cries and does a lot of wonderful and fun and “normal” things. She also grunts, make weird noises with her mouth, finger flicks, flaps her hands, crashes into things and people, laughs inappropriately and loudly, has meltdowns, and does things that would embarrass even the most proud person.

Happy girl!!

She is also one of the most wondrous, amazing, interesting and loving people you could ever get to know. Isn’t it funny that in 4 years she has taught me more about myself as a mother, teacher, and friend than I ever thought anyone could? I don’t know who I would be without all of my kids; they are each so special and so different. Like I said, there is no way I can compare them.