The Journey to Normal: Our Family's Life with Autism

By ID Johnson

Normal isn't anything more than a setting on the washing machine....

When Sophie was born, she was a beautiful, happy, normal baby girl. There was nothing different about her at all. In fact, the pediatrician mentioned how social she was. However, between Sophie's first and second birthdays, things began to change. Her language stopped developing; she was hardly speaking at all. She didn't seem to notice when someone entered a room. She no longer wanted to play with her friends. Something was different about Sophie, but no one could tell us exactly what it was. Though she seemed to have symptoms of autism, there were no conclusive answers. Could it be sensory integration disorder? Perhaps selective mutism?

This is Sophie's story; the story of how a little girl overcame her inability to speak and understand language. It is the true story of my very own precious, amazing daughter and how living with autism has effected each of us. It is compromised mainly of my own blog posts, written as the story unfolded, with details and updates woven in. You will walk along with us and feel our heartache through the pitfalls and rejoice with us through the triumphs. Sophie's story is a beacon of light for other families traversing a similar path. Regardless of where your family might be along this journey, Sophie will inspire you to keep reaching for the light.

• Language: English
• Publisher: ID Johnson
• Release date: Jun 13, 2018
• ISBN: 9781508641551

ID Johnson

ID Johnson wears many hats: mother, wife, editor, tutu maker, and writer, to name a few. Some of her favorite people are the two little girls who often implore that she "watch me!" in the middle of forming finely crafted sentences, that guy who dozes off well before she closes her laptop, and those furry critters at the foot of the bed at night. If she could do anything in the world, she would live in Cinderella's castle and write love stories all day while sipping Dr. Pepper and eating calorie-less Hershey's kisses. For now, she'll stick to her Dallas-area home and spending her days with the characters she's grown to love. After 16 years in education, Johnson has embarked on a new career, one as a full-time writer. This will allow her to write at least one book per month, which means many of your favorite character will have new tales to tell in the upcoming months. Look for two spin-off series of The Clandestine Saga, one staring Cassidy Findley and another involving backstories for your favorite characters. Johnson will also produce several new historical romance novels and a new sweet contemporary Christian romance series as well.

Book preview

Part I

Our Journey So Far

There's Something Not Quite Right

There wasn’t a clear point in time that I can look to and say, That’s when I knew. Unlike some diseases, there is no crystal-clear point in time when someone in a white coat says, Ma’am, your child has autism. In fact, my daughter was almost seven years old before anyone was willing to say conclusively exactly what my child has. And even now, there's been some speculation that she may not meet the criteria for autism in a few years, if she continues to make progress at the rate she is currently, which begs the question: How can she be autistic now but not be later? There is no cure for autism….

Though we do have a diagnosis of autism at this point, it didn't happen overnight. Discovering your child may be autistic often comes in the subtlest of ways. It’s in the little things. When your two-year-old doesn’t look at you when you enter a room. When your three-year-old still isn't speaking in intelligible, complete sentences. When everyone else’s children are playing together, and she is under a tree, digging for who knows what. When you’re at swimming lessons and the well-meaning teenage instructor, frustrated after an hour of trying to communicate says, Lady, I think there’s something wrong with your kid. That’s when you start to realize it’s time to find out what’s going on.

Sophie was born in June of 2007 in a hospital in Texas. Though her birth was induced, it was only ten days before her due date. Nothing went wrong with either the pregnancy or the birth. We had a normal, healthy infant, with ten fingers, ten toes, and a set of lungs. I will mention that Sophie did not pass the hearing test the first time it was administered in the hospital. The second time, there was no problem, and we thought it must have just been a glitch until years later when it seemed to make sense that, even then, in the smallest of ways, Sophie wasn't like everyone else. Perhaps she didn't pass the hearing assessment because it required social interaction and attention to a sensory detail. Perhaps it truly was an anomaly in the procedure. Whatever the case, this was the only indicator that something might be unusual that we noticed in Sophie for quite some time.

When Sophie was a baby, and even when she was a toddler, we would enter a restaurant, and she would babble to everyone. I used to say she never met a stranger. She’d usually find an older man to flirt with, wave, blow kisses. She was the social butterfly I assumed my child would be. I had visions of a chatty-Cathy type of child, much like I had been when I was younger. Reading at four, telling enchanting stories, playing make-believe. And, like most parents, I had huge aspirations as well. I hoped that she would have the benefit of being in a gifted and talented program, I’d learned so much about how to think from mine. I assumed she’d play sports like everyone else in my family always had. A lot of my family members are musically inclined as well, so I envisioned recitals in our future. And at twelve months, Sophie was exactly what I thought she would be.

And then something changed.

It was a gradual realization, too, as it often is. At first, I made excuses. I think most parents do. She doesn’t look at me when I come in the room because she is so busy playing. She hears me, but she chooses to ignore me because she’s being a little diva. She doesn’t want to play with the other kids because she is too sophisticated for them. She doesn’t speak in complete sentences because I always know what she wants, and I just let her get away with pointing. Eventually, however, enough people said something to me that I had to do something to prove they were wrong. Not to prove myself correct, I assure you, but to validate my assumption that there wasn’t anything wrong with my child.

She was just a little different, and that was okay. After all, the doctor had done autism screenings on her at every checkup. We have a fabulous pediatrician and she was quite sure at Sophie's eighteen-month checkup that she was just fine. At two years, I voiced some speech concerns, and she said it wouldn’t hurt to have her evaluated, but it was fairly normal that she wasn’t speaking as well as I, a first-time parent, expected. The pediatrician assured me that, though she was probably just fine, it wouldn't hurt to check. But I didn’t check. Not just then, anyway. If the pediatrician wasn’t losing sleep over it, I wasn’t going to either. My husband, Bill, and I made a resolution that, if she wasn’t making progress by two-and-a-half, we would have her checked out.

Then, Sophie started preschool. The differences in Sophie were apparent immediately to the staff, particularly the director. Almost daily, I received an update or a comment about what Sophie was not doing. I wasn’t completely in denial at this point, but some of the things they said Sophie couldn’t or wouldn’t do at school, she was doing at home. For example, Sophie has always loved animals. She would spend hours pointing at animals and telling me what sounds they made. Sometimes she could tell me the names of the animals in an almost understandable voice, too. At school, she wasn’t doing any of that. If a teacher asked her the name of an animal or the sound that it made, she stared blankly. She often stared blankly. There were other developmental milestones she had not reached at home or at school. She didn’t seem to be aware of the other children as much as she should be. She wouldn’t stay with her group. She was always wondering off to another group of children. If she was given a simple one-step direction, she would seldom, if ever, comply. She wouldn’t answer simple questions like, What is your name? The teachers were very concerned, and my concern was growing by the minute.

And yet, still, I waited. I was pregnant with Ariel, Sophie's little sister. I was working a lot. These are the excuses I used. But mostly, I was scared. I was scared there was something drastically wrong with my child. As much as you want to know what is going on with your baby, you also don’t want to know. Because when someone in a white coat tells you something, often, that makes it true. And if you don’t know if something is true or not, you can always hope that it isn’t.

When Sophie started lying down on the floor in front of each apparatus at gymnastics, the instructors began to ask questions. I took her out of gymnastics. I was too far along in my pregnancy to be participating in gymnastics with her anyway. When my friends started asking if she knew her colors, if she could tell me her address, if she could say what she wanted to eat, we stopped having friends over. I was slowly closing her in, deeper in to the world that she was retreating in to on her own anyway. I asked myself every night what I had done to my child. I must have done something wrong when I was pregnant, though I never drink, never smoke, hardly ever even had caffeine or Tylenol when I was pregnant with her. I thought, Maybe she's not getting enough vitamins or vegetables. Maybe she is watching too much TV or I don't read to her enough. I started doing research. I needed to find a cause or at least a diagnosis. But nothing I read sounded like Sophie. She would meet some of the criteria for one thing but not have all of the symptoms, and then a little of another but not most. It was so aggravating and heartbreaking all at the same time. I would oscillate between, There’s nothing wrong with her, What in the world is wrong with her? What did I do to her? and, Why did God do this to us?

Finally, when Sophie was two-and-a-half, we decided to have her evaluated. Her differences by then were very obvious. She was hardly talking. What she said was barley ever understandable. The little social butterfly had flown away and left me with an aloof, often completely closed off child. We decided to have Early Childhood Intervention take a look at her. Even though I could see all of these differences between Sophie and other children her age, I was very sure they were going to tell me she was just a little delayed, and she would be fine by the time she was three. What they actually told me was so shocking, it took my breath away.

Early Childhood Intervention

In Texas, when you think your child may have a speech or developmental delay and may need some sort of therapy, you contact Early Childhood Intervention. In the county where we live, the organization that assesses and services these children is called Lifepath Systems. You make a quick phone call, an extremely polite and understanding professional takes some information, reassures you that everything will be just fine, sets an appointment, and then some nice therapists and diagnosticians show up at your house to see if your kid's all right. Simple enough.

The evaluation itself was conducted by a speech pathologist and a diagnostician. They came a few weeks before Christmas and stayed for about two hours. They asked Sophie to play with certain toys, look at certain books, and manipulate certain objects. They asked her questions she could not answer. They asked her to sing songs she could not sing, and they asked her what sounds animals made. That, she could do. They had lots of questions for me, too. They asked me what she could do, what she couldn't do, what she liked to do, what she didn't like to do, what she knew, what she didn't know, etc. Was there anything unusual about my pregnancy? Was there anything unusual about the birth? Was there a family history of learning disabilities, intellectual disabilities, birth defects, etc.? Had she suffered any traumatic brain injuries or blows to the head? No, no, no. None of those things. She just couldn't talk. That's all that was wrong or different, I kept repeating. She just didn't talk! In fact, I even explained that we thought she was choosing not to speak, that she could if she wanted to.

The therapists were polite; they made notes that began with stems like, The mother reports…. I know those reports. I've taken those reports. They asked if we had had her hearing checked. Yes, we had. She can hear. She just doesn't respond. They understood. They would go back to the office and do some math. They would look at some charts and spreadsheets, use some equations and tables to figure some things out, and they would be back in a week. One week and I would finally know what was wrong with my baby!

Except for they didn't know. They came back in one week, this time with an occupational therapist as well. They talked about how sweet and beautiful Sophie was and how lovely our home was, and how we were all going to have a Merry Christmas. Then they pulled out their charts and reports. Again, I am familiar with standardized screening and diagnostic tests. Part of my job is to help identify students who may need special education services. They talked to me like I had no idea what a chart was, and that's fine because at the time it didn't matter. I was waiting for them to say they were sorry, but Sophie just didn't qualify for their services. But of course, Sophie did qualify for their services. In fact, of the four areas they tested in, Sophie qualified in two of them and almost a third. She did extremely well in the category that judges physical capabilities. She did extremely poorly in the language and communication category as I expected, and she was borderline in another category that had to do with potty training, napping, that sort of thing. She was behind in her social skills, as far as interacting with other children and adults. And then they threw the number at me that made me stop breathing. According to their screener, she was significantly behind in her cognitive development. Again, I had to ask for clarification. My child was very bright. She could sort objects by color. She could problem-solve like no other two-year-old I'd ever known. She could manipulate objects, find ways to make things work, and had spatial reasoning skills that I couldn't believe, but these people were telling me she was extremely behind cognitively. How far