The Journey to "Normal," Part 1

This is the first installment in a series I intend to write to detail my experiences as a parent with a special-needs child. This article is meant to help parents in similar situations understand that they are not alone. These are my experiences, my thoughts, my feelings and I lay them out for the world to see because I hope that, through my long and tedious journey down the road toward “normal” another parent’s journey may not be quiet as tough. 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, “Mam, your child has autism,” or “sensory integration disorder,” or “language processing issues.” In fact, my daughter is five-and-a-half and I have yet to hear anyone say conclusively what my child has. At this point, there are more specialists telling me she probably doesn’t have autism than are saying she does. But clearly, there is something different about my child. And this isn’t discovered over night. It’s in the little things. When your two year old doesn’t look at you when you enter a room. 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. When Imma was a little girl, around a year old, we would enter a restaurant and she would talk to everyone. I used to say she never met a stranger. She’d 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 was. 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 12 months, Imma was exactly what I thought she would be. And then something changed.

Caption: Imma at 14 months, ever the social butterfly, smiling and laughing. 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 check-up. We have a fabulous pediatrician and she was quite sure at Imma’s 18 month check-up that she was just fine. At 2 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. She assured me that she was probably just fine. But it doesn’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 and I made a resolution that, if she wasn’t making progress by 2 1/2, we would have her “checked out.” Then, she started pre-school. The differences in Imma were apparent immediately to the staff, particularly the director. Almost daily, I received an update or a comment about what Imma was not doing. I wasn’t completely in denial at this point, but some of the things they said Imma “couldn’t” or “wouldn’t” do at school, she was doing at home. For example, Imma has always loved animals. She would spend hours pointing at animals and telling me what sound 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. 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 Lucy. 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.

Caption: Imma at 25 months. She was fading away. When Imma 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 pregnant 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 I didn’t give her enough vitamins or vegetables. Maybe she was watching too much TV or I didn’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 Imma. She would meet some of the criteria for one thing but not all of the symptoms, and then a little of another but not most. It was so aggravating and heart-breaking 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 me? Finally, when Imma 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 barey 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 Imma 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.