The Journey to "Normal," Part 2: Early Childhood Intervention

11 months. The news hit me in the heart much in the same way a fist to the stomach leaves you breathless and spinning. It wasn't possible. There was some sort of mathematical error, these people were crazy, I didn't understand what they were saying and just needed a little clarification. But when it was explained to me again, the answer was still the same. 11 months.

Imma at 2 1/2. We had finally gotten the evaluation done. In Texas, when you think your child may have a speech or developmental delay, may need some sort of therapy, you contact Early Childhood Intervention. In Collin County, the organization is called Lifepath Systems. You make a quick phone call, in my case, an extremely polite and understanding professional takes some information, reassures you that everything will be just fine, sets an appointment, and the some nice therapists and diagnosticians show up at your house to see if your kid's alright. Simple enough. The evaluation itself was conducted by a speech pathologist and a diagnostician. They gave a few weeks before Christmas and stayed for about two hours. They asked Imma to play with certain toys, look at certain books, 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. What she could do, what she couldn't do, what she like 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, mental retardation, 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. They 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 1 week, this time with an Occupational Therapist as well. They talked about how sweet and beautiful Imma 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 Imma just didn't qualify for their services. But of course, Imma did qualified for their services. In fact, of the four areas they tested in, Imma qualifed 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? 11 months. She's 30 months old. Do you mean she has the cognitive abilities of a 19 month old? Yes, she is 11 months behind. That's almost a year. Yes, cognitively, she is 11 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. 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 then 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 OT 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 non-verbal 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 OT to visit once every two weeks at pre-school so that she could do play therapy with Imma 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." And so the circle continues. 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 6 months of therapy through Lifepath Systems until Imma was 3. At that time, she would fall under the jurisdiction of the local school district, which I happened to work for. Of course, I was confident that we wouldn't need 6 months of therapy, but if we did get to the point where she would need to be evaluated by the school district, she wouldn't need any services, except for maybe speech. 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. If you live in Collin County Texas and you suspect your child may benefit from Early Childhood Intervention, please contact your pediatrician or Lifepath Systems at 972-562-0331, www.lifepathservices.org. There are lots of websites available if you have questions about what services you qualify. You can look at your state's official website. Early Childhood Intervention is the name for these services in Texas but it may be called something different if you live in another state, such as Ready Start.

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.