Dancing In The Dark

A Personal Story: How Autism Affects The Family

By Susan Harris. This article appears courtesy of The Long Island Press. All rights reserved.

It's been two years, two months since that devastating day in 2003 that I got my son Oliver's autism diagnosis. It sounds so clichéd, but I remember it like it was yesterday. I'm sure all of us parents of autistic children do. It's the day that your life changes forever. The day that your life takes a turn for the worse.

I was sitting in my car on a beautiful summer day in front of a Kinko's copy center. I had just made copies of my son's medical records, the first of many medical records I would have to copy. My cell phone rang and it was the social worker who I met at the hospital where my son had just been evaluated. She told me the doctor had a diagnosis, and that my suspicions were correct. Indeed my son had autism. I was devastated. There is no way to convey the pain that runs through your body. I don't even remember the car ride home. I just remember thinking our happy family's life was no longer going to be the same. Of course, at that moment in time, I had no idea just how true that statement would prove to be.

When I got home and told friends and family members about the diagnosis, everyone said the same thing: "God only gives you things you can handle." First of all, I'm not a religious person, so maybe God was punishing me for not being a big believer. Or was it that people tell you this because, really, what else could they say? Maybe they felt by offering that reassurance, it would make the situation a little better. Sort of like when it rains on your wedding day and everyone tells you it's good luck. (By the way, it poured on my wedding day, like a monsoon, so by those standards I should've had 100 years of good luck.)

Well, no such luck, now that we have autism in our lives. For those of you who do not know what autism is, or do not know an autistic person, you soon will. Autism is a complex disorder that affects the socialization and communication centers of the brain. More alarming, it affects one in 166 children a year, according to the organization Autism Speaks, which is up from five years ago, when it affected one in 500 children. That means that 67 children are diagnosed a day, almost three children are diagnosed each hour and 2,000 children diagnosed each month. In the United Kingdom, the number is now 1 in 150. Ours should catch up shortly. The rate of this epidemic's increase is alarming.

Experts do not know what causes it, or why it is on the increase. What is known, however, is how devastating it is to the family.

THE MARRIAGE

What happens to the family unit when autism enters it is as unbelievable as the diagnosis itself. Everything you know to be true is tested-marriages, siblings' lives, finances, living with your own thoughts, and friendships, to name a few.

Seventy-five to 80 percent of marriages of parents with autistic children fail. That is a huge percentage.

In my own marriage, the diagnosis, at first, brought us closer together. But then important decisions had to be made, and that was the hard part. Spouses don't necessarily agree. So you fight, and the fights become more vicious than any fight you ever had because the outcome of your child's well-being depends on your decisions. I can't even remember what we fought about before the diagnosis. I'm sure it was insignificant and trivial. Now we have these fights that get so intense they scare me, and they sadden me. Unfortunately, they are now very much a part of our lives, as much as the autism.

Oliver, now 4, was diagnosed at 17 months old. At 9 months, I had my suspicions. At 12 months I addressed them to my pediatrician who did not want to "put a label on it." Finally, at Oliver's 15-month check up, I said to my pediatrician, "I'm telling you something is not right with my child. And, although I didn't go to medical school and I do not have a fancy diploma hanging on my wall, my gut feeling is, something is wrong." Only when I said this did he acquiesce: "Okay," he said. "Let's go see a child neurologist."

One of the reasons I had my son evaluated for autism was that my oldest son, Matthew, then 9, kept asking me, "Why doesn't Oliver like me, Mom?"

And, I would say, "Of course he likes you, honey. He's just new to us and we are new to him. Don't worry, before you know it, Oliver will be getting in your way, and you'll be saying. 'Mom, Oliver is bothering me.' And, I'll say, 'Honey, he just loves you and wants to be with you.'"

Well, that scenario never played out. Oliver never lit up like children usually do when older siblings entered the room. In fact, he didn't notice anybody at all when they entered the room. It's very hard on my children when they go to play with Oliver and he's just not interested.

What's also very difficult for the siblings of autistic children is that they see how hard these autistic children work. My son puts in a full day of school and four hours of therapy after school. He starts at 9 a.m. and finishes at 8 p.m., Monday through Friday. He puts in a 40-hour work week. There is no time for play dates. It's all work and no play.

Oliver used to have therapy on the weekend as well. He'd have between two and four hours on Saturday and a maximum of two on Sunday. We stopped the weekend therapy for two reasons: (1) it's expensive, and (2) therapists are very hard to come by, especially on the weekends. Autism can burn you out quickly. The therapists do need some sort of mental escape, so most of them take the weekends off. Keep in mind, this job is very mentally and physically intense-these therapists get banged up pretty bad sometimes. They get hit, scratched and bitten. Jessie, a former therapist of ours, had her nose broken by an autistic child who head-banged her.

So now, on weekends we try to do things like go to a movie, a zoo, an aquarium, or visit family and friends. At one point Oliver had a socialization class on Sundays, and now he is taking swimming lessons that day.

THE SIBLINGS

Siblings see the stress that the parents go through. They see and hear the fights. They know what life used to be like, and they know it's not like that anymore. They also feel neglected. Mommy and Daddy used to be there for them, and now, because autism is a full-time job, the parents devote their time to the child who is autistic. That's a hard lesson for the other children to learn.

Oliver having autism has definitely affected my other children. I know that it upsets the both of them, but they try to be brave for my sake.

Matthew, now 12, won't talk about it with me, but I recently found out from a friend of mine that he discusses it with her, which I'm glad he feels comfortable doing. I just wish it were with me. Neither of my two kids have any interest in going to a sibling support group, even though I think it would be a tremendous help to them. They are adamant about not going, and I have to respect that.

In Matthew's school they do a school-wide project, "Pay it Forward," where they have to do something to benefit the community. Matthew started a school chapter of Autism Speaks, where he is supporting autism awareness as well as trying to raise money to help the cause.

Danielle, now 8, is amazing with Oliver. She has become a little special-education teacher to him. She observes him with his home therapists, and then practices what they preach. If she comes into a room and says, "Hi, Oliver," and he doesn't respond to her, she will repeat it a few more times. If he still doesn't respond and happens to be watching TV or looking at a book, she will turn off the TV or take the book away from him and say, "Oliver," I said 'Hello' to you-what do you say?'" And, then he will say, "Hi, Danielle." She doesn't take any crap from him. She is patient, but very firm. She has told me that she wants to be a special-education teacher, which she would be so wonderful at.

But one thing that deeply bothers me about Danielle's situation is that for her there is no escape from autism. She has it at home, but she looks for it at her school. Apparently, this year they have special-needs kids mainstreamed at her school and she constantly observes them and then comes home and tells me about their behaviors. I don't want her to be obsessed with this. She should have some sort of a carefree childhood, and obviously she cannot escape it at home, but I would like her to escape it at school.

For me, the most painful thing was to hear from Matthew that he wished he were the one to be affected by autism. It's not uncommon to get responses like that. I heard from parents that their children with autistic siblings wished they were an only child. Of course, typical children say that of their typical siblings. It's just sad to know that in this case, because they see the hardships that arrive with autism, these siblings really do mean it.

THE COST

Autism is incredibly expensive. I knew this fact when I set out to write this article, but, ironically, it was only when I started writing this piece that I began to realize how much money we spend out-of-pocket to pay for Oliver's services. Our state and local governments pay for the autistic child's education, as well as certain therapies that they think the child deserves. Of course, they only provide the child with a minimum of therapies, and a minimum of time. It is up to the families to supplement the other therapies, or the amount of therapy. This is where it gets costly. The families pay for extra physical, speech, OT (occupational therapy) and ABA (applied behavioral analysis), just to name a few of the types of therapies. Therapists get anywhere from $35 to $150 an hour, depending on their experience.

We built a Sensory Room in our basement, which cost about $10,000. It is filled with things like a ball pit, trampoline, mats and swings. All these things help autistic children focus. Sensory input is as important to autistic children as anything else.

Then there are babysitters. Although Oliver is in therapy and school all day, I have to hire babysitters to help with my other children to make sure they get off the school bus. This gets to be expensive, even at $15 an hour.

Special diets are something parents of autistic kids believe in. Some, for example, go on a GFWF diet-gluten-free, wheat-free diet. The ingredients are hard to come by, and you have to shop at specialty stores. The food is expensive and you have to make a lot of meals from scratch and that is also time consuming. I know a group of people in my town who make a pilgrimage to the Catskill area around Passover. They go to the Hassidic communities to buy pareve, or kosher, foods.

There are many services autistic children require. Some include art therapy, music therapy, chiropractic cranial sacral therapy (scalp massages), the Pegasus horse-riding program, karate and floor time, in addition to the typical therapies. On an average week, we spend $550 out of pocket just for our son's ABA therapy. Oliver's developmental psychologist alone gets $150 an hour. That is about $30,000 for therapy a year just so our son can potentially lead a somewhat normal life. None of these therapies are covered by insurance. And, with all the time and money spent on these therapies, unfortunately, there are no guarantees.

You do it all, and you kill yourself doing it, because in the end you can say, "At least we tried everything."

IN YOUR OWN HEAD

You beat yourself up along the entire journey. In my own scenario, I drive my child to school every day because I cannot bear to put my nonverbal 4-year-old on a bus. My commute each way is 50 minutes long. I do a lot of thinking on that car ride because, after all, my child cannot talk to me.

I make that trip four times a day. I am in that car a minimum of four hours a day where I have long one-way conversations with Oliver as we commute back and forth from home to school to therapies to home again.

The car routine is practically the same every day. We see school buses, so we say, "school bus." We live in horse country, so every day we say, "Hello, horsie" and I ask, "What does a horse say?" and Oliver neighs. He notices the stables and now says, "barns," and I ask him what the horses eat.

When we get to Matthew's school, I point out to Oliver that it is where Matthew goes to school. Once we are on the highway we take notice of the trucks, and the different colors of cars. We talk about the weather if it is rainy, or very sunny, etc. Oliver may ask me for something like juice or a book or some music that he wants to hear, but that is the extent of our conversation. I do the talking; he listens but he doesn't say much. It's hard to keep the dialogue going when the other person doesn't talk. Imagine you are sitting in a car with a person who speaks only Russian. You have little or no knowledge of the Russian language and he has just a little English at his disposal. At some point there can only be silence. So you zone out and you are left with what's on the radio or your own thoughts-which can get very ugly sometimes.

During those long commutes, all I have are my thoughts. So, I question every little thing that we do for our autistic child and our other children. I say things to myself like, "Would it have been better if he was born typical, but got cancer? Yes, there is that chance that he could die, but at least cancer is charted territory. There is a chance of a cure. And, more importantly, you have your child. Not just a shell of a child. At least with cancer, you have verbalization, you have a personality, you have a child who wants to be mothered, who cares if you are in a room with them or not." It's sheer heartbreak.

Eustacia Cutler is the mother of Temple Grandin, an accomplished, successful adult with autism. I think she said it best in her book, A Thorn In My Side: "A baby needs a mother to know she's a baby. But, a mother needs a baby to know she's a mother." I feel so cheated at times. I go through life looking at my child all the time, thinking: "When will he respond to something, anything, to get that look on his face that just says, 'I've just been to Disneyworld?'" Unfortunately, those looks come so far and few between.

Autism is a steep learning curve. You learn about the disorder, and all the new vocabulary that comes with it. You learn to deal with your emotions. You learn to talk to your child who does not speak the same language as you. You learn to deal with autism because you have to. You either sink or swim. You learn how to deal with your spouse and your other children. But you also learn who your true friends are. When autism enters your life, relationships are tested. Friends who you thought would be there for you, you'll find, are unable to deal with autism. I've had friends who said they'd stick it out with me, but soon began treating autism like it was contagious, like it was leprosy. I had a friend who insisted that she drive my daughter to a gymnastics class with her daughter and then accused me of taking advantage of the situation, even though I never asked her for this favor.

Then there are the friends who can't understand that you no longer have time to socialize with them, not because you don't want to (because God knows you need them more than ever), but because you don't have the time like you used to before autism. But the friends who stick it out, who listen to the tears, are amazing. And I have made some incredible friendships with people who are in the same boat, and that has helped me immensely.

BETTER DAYS

I started this article off by saying the day you get your autism diagnosis is the day your life changes for the worse, not for the better. It took me months to write this article; mainly, for the lack of time in my day. But also, I just couldn't finish it. It became too painful. For the record, it's now been over two years since I've gotten my son's autism diagnosis, and I can honestly say, I now feel the best I have since that dreadful day.

There is a grieving process. I'm sure it's not the same for us all. For me, it took a while to get on with my life again. I no longer feel that my life has changed for the worse. I feel it has changed for the better. I love all my children the same, but I feel such incredible unique love for my son with autism. There isn't a moment that I'm not telling him how much I love him. Or how lucky I am to have him as my son.

Oliver is an adorable little 4-year-old, with a most special smile. He is so loving, and actually craves to be hugged and kissed. Thank God for that, because a lot of these kids cannot stand to be touched. It is as if they were being stabbed. Can you imagine a new parent who wants to cuddle their newborn and their child actually pushes them away? It's devastating.

Oliver is very bright, but lacks language and socialization skills to make him like a typical little boy. He is very hyper and cannot sit for more than a minute. He is so very happy and that makes me happy. He loves trains. Wrong. He is fascinated by them.

He constantly "labels" items like foods, vehicles, clothing, toys, etc., referring to them out loud by name. He only has two sentences: "I want..." and "Can I have...?" He has also learned to sight read, even though he doesn't have communication skills. Although he cannot have a conversation with you, he has memorized TV shows that he watches and can recite them back to you word for word. This is called scripting. He also talks to his hands as though they were puppets. Weirdly enough, he sometimes has to be prompted to say "Hello" or "Bye" to a person, but quite often I hear him saying goodbye or hello to inanimate objects. "Bye, puzzle," "Bye, snowflake," "Bye, chair."

That labeling and repeating and other aspects of Oliver not being able to verbalize can have serious repercussions. When he's ill, for example, he cannot tell me. I have to be intuitive. It is very difficult with a sick autistic child who has a fever, but does not have the vocabulary to tell you what hurts. It's very frustrating. I say, "Oliver, do your ears hurt?" and he repeats, "Ears hurt." "Does your throat hurt?" He repeats, "Throat hurt." I say, "Do you like rusty nails?" and he says, "Rusty nails."

A sore throat or ear infection is bad enough, but I'm nervous about appendicitis with Oliver. It is hereditary-both Danielle and my grandmother had it. It has been known that autistic kids die from appendicitis because they don't have the vocabulary to say "stomach," or be more specific to show where they hurt.

It took a while to get here, but the important thing is that I'm here. I have learned to love the quirky behavior that comes with autism. When Oliver drew on my wall in my home's front entrance, I could have had hired someone to replace that wallpaper. Instead, I decided to put a frame around it. After all, it's my son's artwork and I don't get much of that type of thing, because unlike typical preschools, for Oliver, it is all work and no play.

Someone once told me when I was planning my wedding, "Don't worry if the ceiling falls down, just dance around it." Well, I think I'm finally dancing.

This article appears courtesy of The Long Island Press. All rights reserved.