The Journey to Normal E-Book

Johnson ID

• Herausgeber: ID Johnson
• Kategorie: Für Kinder und Jugendliche
• Sprache: Englisch

Veröffentlichungsjahr: 2022

Beschreibung

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.

Leseprobe

The Journey to Normal

Our Family’s Life with Autism

ID Johnson

Contents

I. Our Journey So Far

1. There's Something Not Quite Right

2. Early Childhood Intervention

3. Preschool Program for Children with Disabilities

4. Structured-Teach

5. A Jog in the Path

6. Kindergarten

7. First Grade

8. Second Grade

II. Blog Posts

9. Glossary of Terms

10. Websites

A Note from the Author

Also by ID Johnson

Copyright 2014 by ID Johnson. All rights reserved.

Although the author and publisher have made every effort to ensure that the information in this book is correct, the author, and publisher do not assume and hereby disclaim any liability to any party for any loss, damage, or disruption caused by errors or omissions, whether such errors or omissions result from negligence, accident, or any other cause. This book is not intended as a substitute for the medical advice of physicians. The reader should regularly consult a physician in matters relating to his/her health or the health of a family member and particularly with respect to any symptoms that may require diagnosis or medical attention.

Cover by Sparrow Book Cover Designs

Created with Vellum

For my daughters

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 behind?

"Eleven months."

"She's thirty months old. Do you mean she has the cognitive abilities of a nineteen-month-old?" I asked, needing clarification.

"Yes, she is eleven months behind," was the reply I received.

"That's almost a year!"

"Yes, cognitively, she is eleven months behind."

At this point I asked a lot of questions about how they came to this determination. They showed me the charts, pulled out the tables, explained the questions and how they figured out what that implied. The assessment they had administered was called the Performance Assessment for Language Students or PALS. They said that most of the scores were based on her ability to answer questions and sing songs, recite nursery rhymes, etc. I said, "But she can't talk." They knew that. "So, how do we know that's not just an indicator that she can't talk and not an indicator that she is cognitively behind?"

They admitted that the test was heavy on the oral language skills, and it is possible that she could be just fine cognitively, but the test indicated that she wasn't. She was cognitively behind because she couldn't sing "Twinkle, Twinkle, Little Star," tell them her name, tell them which picture was a cookie. I assured them that she knew those things; she just couldn't say them. They were very understanding and assured me that everything was going to be just fine. She would qualify for speech and occupational therapy services, and they would find ways to help her develop.

I still don't know if they believed my child was really that far behind or if they understood that you cannot judge a nonverbal child's intelligence based upon a verbal exam, but we set up a schedule for the speech therapist to visit us once a week at home and the occupational therapist to visit once every two weeks at preschool so that she could do play therapy with Sophie while there were other children around. We had a plan in place now, and even though I was still reeling from their numbers, I was able to accept that she needed some help, and I was hopeful that this would be exactly what she needed to be "normal" like everyone else's child.

My final question was one I had been asking and have been continuing to ask for quite some time. What caused this? The answer I got is a variable of the same answer I've been getting for years and may always continue to get. "She hasn't developed her ability to communicate verbally."

"Yes, but why?"

"Well, when she hears speech, she doesn't understand how to process it."

"I understand that. But what causes that?"

"It's some sort of developmental delay."

So, the circle continued. At the time, it was very important for me to answer three questions. 1) What is wrong with my child? 2) What caused this? 3) How do we fix it? The last one, of course, was the most important one, and I was content for the time that we were finally on our way to answering it. We would have six months of therapy through Lifepath Systems until Sophie was three years old. At that time, she would fall under the jurisdiction of the local school district, which I happened to work for.

Despite the fact that the PALS showed that Sophie was far behind in cognitive and linguistic skills, neither of the professionals mentioned during this initial evaluation that they felt that she might be autistic. That word never came up at all, despite my probing for some sort of a diagnosis or a cause. At this point in time, I had no suspicion whatsoever that Sophie might be autistic, and I honestly wasn't even considering it. After all, our pediatrician had ruled that out. So, we went about starting therapy, content that she would have a few months of speech and occupational therapy, and if she qualified for speech from the school, then she would benefit from that as well. I was very confident she would need no other services from the school district. But like everything else on this journey, that mountain was around the corner, and I could not yet see how extremely steep and sharply designed that path would be. 

From the time Sophie was two-and-a-half until she turned three in June of 2010, she had sessions with both a speech therapist and an occupational therapist. In December of 2009, I was extremely hopeful that this would “fix” her. I use that word because that’s what I was hoping for. I have read a lot of posts by parents with special needs children who say things like, “My child doesn’t need fixed. She’s perfect just the way she is.” Or, “If my child could do x, y, z, he wouldn’t be the same person.” I get that. I really do. I totally understand that Sophie is who she is because of her disability, and as much as I love who she is and would never trade her for anyone, that does not mean that I want her to have a disability for the rest of her life. Let’s face it; it’s a lot easier to get along in this world if you can speak and understand verbal communication. So, why would I want my child to try to navigate in life without those basic skills?

Of course, I want her to continue to have all the amazing gifts she has. Sophie is extremely gifted in many areas, especially when it comes to math and spatial reasoning. I’ve literally watched in amazement as she has put together complicated puzzles quickly, just by glancing at the shape of the piece she needs next. No, “Do the corners first and then the edges.” She doesn’t even need a picture. She can just look at the shapes and put it together. She can subitize like no child I’ve ever seen before, though she’s not exactly Rainman with the box of matches yet, though she is getting there.