An Excerpt From The eBook: Small Miracles Day By Day A guide for parents of individuals with low functioning autism
A Note to the Reader
If you are reading this book, I assume you are one of us – a parent of a low functioning autistic child. (Or maybe you have several autistic children, like more and more people I’ve come to know.) We understand each other like nobody else can. Who else but we understand what it means to live with a child who is still in diapers at the age of six, eight, ten and even older, and even after she is toilet trained, is still having accidents? Who else but we can know what It’s like to be happy that our child is only tearing the newspapers and getting the shredded paper all over the house, because at least he’s not breaking the window? We all know the never-ending pain – the anger, frustration, and even depression we feel, living in the unfair world we do. A world where so much of the public school special ed system is more concerned with their budget, and making their life as easy as possible, than they are about doing what is best for our children. A world where the government services are not nearly enough, and even when we have the budget, we can’t find the people to help us. We live with holes in our walls. Walls without pictures, because the pictures wouldn’t last on our walls for a day. Our phone books are filled with autism. All kinds of practitioners whom we have hoped, or continue to hope, can improve our child’s functioning, from the conventional to unconventional, and names of friends whom we have met only because we have autistic children, all fill our phone books. But there is also the joy that only we can know. Some of us will feel this joy when our child makes eye contact with us. Some of us will feel it when we see our child is finally learning to talk. For those of us with children who have been nonverbal for a long time, every word that comes from their mouth will be precious. And some of us will know this joy when our child finally walks to the bathroom to use the toilet without being told by anyone to do so. When our children do something that we were afraid to ever dare hope for, we feel a boundless joy and gratitude that no parent who does not live in our world can ever touch. I didn’t write this book to share my pain and commiserate with other parents of autistic children, nor did I write it to let the rest of the world know what we live with. You will not find much talk of my feelings of pain, frustration, etc., in these pages. That doesn’t mean that it has not been there, or that it does not continue to be there. I want you to know that the author of this book understands and has been through it all. I am a parent just like you. Understand that expressing my feelings was just not the purpose of this book. It is the joy, rather than the pain, that has been the driving force behind this book. After years of struggling and searching, I have found certain ideas that have led to some success for my son. I wanted to share these ideas with other parents of low functioning autistic children, so that they might also experience the joy of hearing words from their nonverbal child, or see an older child finally go to the bathroom independently. Thus, this book has become more of a guidebook than a personal story, although you will find glimpses of our story sprinkled throughout these pages. When we stop to think of it, there really isn’t anything special about this book. So many parents, who have struggled for years to find something to help their child, could easily write a book about the things they have found helpful. It is only that somehow I am finally getting around to writing one. Wouldn’t it be wonderful if we could all compile one big book where we all share our experiences as to what has helped our children? Then we could all benefit from each other’s knowledge and experience. But until we all get together to write such a book, here is my humble contribution. I’m all too aware that not every child will respond equally to the suggestions in this book. Perhaps some may not respond much at all, and some, I believe, will probably succeed far beyond my son. Until we find the answer to this autism dilemma, I hope the suggestions you find in this book will help bring about some measure of higher functioning for your child. Love, Dara
The Beauty of Simplicity
Two good friends, Linda and Susan, are sitting and chatting on a park bench. Both are moms of low functioning autistic boys. Both Linda and Susan’s sons are about ten years old. Let us listen to their conversation. Linda: “I know that Ron has a long way to go, but at least he can dress himself!” Susan: (Sigh) “I can’t quite say the same. Sam just doesn’t seem to get it! I’ve been working on it for years already.” Linda: “Mmm. I wonder why It’s so hard for your son?” Susan: “I don’t know. I’m getting really frustrated.” Yes, why is it so hard for Sammy to learn to dress himself? Shhh… come with me. We’re going to peek into the classroom of these children. Come to the window and look in. See that boy over there? The one with the button-down dress shirt? That’s Sam. Look at his pants. It’s got a zipper in the front and a clasp on top. Psst! Look at those shoes! Yeah… laces. Imagine how hard it is for Sammy to get dressed. He has to figure out which arm to put in which sleeve. And forget the buttons! Susan and Sammy engage in a frustrating routine every morning as Susan tries to teach Sammy to do those buttons. Needless to say, Sammy has trouble with the zipper and clasp on his pants. He doesn’t even know how to put on the pants so that the zipper and clasp end up in the front. We won’t even talk about the shoelaces! Why does Susan have Sammy wear such difficult clothing? Because Susan is idealistic and she is fighting for Sammy to be no different than his typical peers. And typical ten year olds are able to do little buttons, clasps, and zippers, and tie their shoes. Isn’t that so? Susan will not settle for anything less for her son. Now let’s take a look at Ron. He’s the one with the blue sweatshirt and gray sweatpants. His jogging pants have a simple elastic waist. Easy pull up- easy pull down. No buttons. No clasps or snaps. No zippers. Notice how the shirt and pants are one solid color all around. Ron can put his shirt and pants on backwards or forwards and it looks just the same. What about the label? No problem! Linda removes all the labels from her son’s clothing. So there really is no front and back. Look at the shoes. Velcro! Linda would’ve bought slip-ons if Ron didn’t have the bad habit of taking his shoes off all the time. Why does Linda dress Ron in such simple clothing? Because like Susan, Linda is fighting for her child to be no different than his typical peers. She knows Ron has a long way to go in learning how to talk, how to socialize, and a host of other life skills. Linda realizes that there are a limited number of hours in a day, a limited number of days in a week, a limited number of weeks in a month, and a limited number of months in a year. Ron is getting older too quickly. So Linda wisely chooses to give her son the simplest clothing to ensure that Ron will become independent in his dressing skills in as short a time as possible. This will leave Linda with more time and energy to teaching her son other skills, such as speech and language. But how does Ron know to put his shoes on the correct feet? Well, we can’t give away all our secrets right away, can we? Now, let’s imagine that Linda and Susan meet again at the park, this time with their children. The boys are wearing their usual attire. Susan remarks, “I see you keep your son in simple clothing.” “Yes.” “Can Ron do buttons?” “Nope!” Linda chuckles. “You don’t seem like it bothers you. Don’t you want Ron to do all the things that normal children can do? Including buttons and snaps?” “Yeah, I’m still fighting for Ron. I guess I’m idealistic. I don’t have the time for buttons and snaps. We’re too busy working on speech, socializing and other things. Listen, It’s okay with me if my son is the first President of the United States to appear in sweatpants and a tee shirt on TV. He’ll explain to the country that he’s a very high functioning autistic man. He can talk, read, write… everything! But he can’t do those little buttons!” Linda laughs at the scene she’s just created. “Well,” she continues,” I guess before he runs for President, we’ll have to teach him how to do those buttons.” Susan laughs. She laughs all the way to the store. She’s going shopping for some simple clothing. And so are you.
Buying Simple Clothes
You are going shopping for simple clothes. This does not mean that teaching your child to dress himself will be easy, but it will make it a whole lot easier. Like Linda and Susan, you have other important skills to work on besides dressing skills, and so we want to make this as easy as possible. Here is a shopping list:
- T-shirts with no difference between front and back. Make sure there is no design that appears only on the front. Check the neckline. Is there a difference with the neckline in the front and in the back? You don’t want the scoop of the neckline to be lower in the front. It should look the same on both sides. Don’t worry about any labels. You will remove them when you get home. The shirt should be such that once you remove the label, nobody can tell which is the front and which is the back, so your child can put it on in any direction and it won’t matter.
- Shorts. Again, you are looking for shorts that look the same both front and back. Elastic waist. You don’t want to see anything that makes the shorts look different in the front than in the back. That means no zippers, clasps, snaps, and the like. Anyway, those things will only make it harder for your child to get dressed. Of course, you will remove those labels when you get home.
- Simple socks. Same color all around. Avoid those socks that have a different color for the toe and heel. Go for tube socks. You also may want to go for the short socks, rather than the longer socks that have to be pulled up.
If you have a girl, she can still wear tee shirts and shorts that are the same both front and back. You also have the advantage of being able to buy skirts. The simple skirts with the elastic waist. My feeling is It’s easier to find the simple skirts with the elastic waist than it is to find simple shorts or pants which look the same on both sides. But I guess I shouldn’t make those kinds of assumptions, since I never shopped for an autistic girl. Mine is a boy. Still, I will stick my two cents in about dressing girls, even though I don’t have any experience. I would like to suggest that if you have a girl, you go and buy a simple dress. I mean the type that usually comes in a tee-shirt-like material – It’s got no buttons or anything that would make it look different in the front. The type of dress she can just slip over her head, put in her arms and she’s dressed! Voila! Whether yours is a boy or girl, buy the simple shoes. Buy slip-on shoes if your child doesn’t have a habit of taking off his shoes. If he does, use Velcro. Please, not laces! For winter, It’s much the same. Just substitute the shorts and tee shirts for sweatpants and sweatshirts. It’s not always easy to find these types of simple clothing. A lot of clothes have things which make them look different in the front and back. Many tee shirts have pictures or logos. The pants tend to have zippers, etc., in the front. You may have to shop at several stores. Keep your eyes open for simple clothes in catalogues as well. It’s worth shopping around. Did I forget to tell you what type of underpants to buy? Well, with underpants, especially boy’s, you really can’t avoid the fact that they have a front and a back. It may not be the end of the world if your child puts his underpants on backwards, as long as he’s comfortable. But later we will talk about how to teach your child to put on his underpants with the label in the back. It’s good for your child to have the skill of putting his clothes on with the label in the back, just in case you can’t ALWAYS find the world’s most simple clothing. What? You say your child is not wearing underpants? He is still in diapers? We will try to remedy that situation in our toileting section. In the meantime, he can still learn to put on the rest of his clothing independently.