The Journey to “Normal,” Part 5: Structured-Teach and Therapy

The district where Imma attended PPCD (Preschool Program forChildren with Disabilities) and where I used to teach has a renown autism unit.  They have an amazing team of autism specialists.  Parents move their families, actually relocate, so that their autistic children can attend public school in that district and get the same amazing services some people have to pay thousands of dollars annually to receive in private school or private therapy. If your child is autistic, that is the place to live.

But my child wasn’t autistic.  And I had the evaluation to prove it. 

Imma's first day of school 2011-12

Imma’s teachers were convinced that she would benefit greatly from the autism unit at their campus, also known as the Structured-Teach Classroom or STC.  They showed me tons of data they had collected which demonstrated how Imma responded to direct teach.  This is when the teacher works with the student one-on-one and using the ABA (Applied Behavior Analysis)materials in this setting, Imma was making progress.  The data didn’t lie. 

I was afraid. I didn’t want Imma in the autism unit.  I didn’t want her labled as autistic,particularly if she wasn’t.  I wanted her to have good role models, typically developing role models, verbal role models.I was afraid she would stop making progress in that setting. I was assured that this would not be the case.  She would continue to flourish.  And, after-all,she did seem to be responding to this method. Maybe it would be the best place for her.

She was also very interested in reading.  She loved letters and was starting to read words, particularly animal names.  The school psychologist who had performed Imma’s autism evaluation suggested that we look into hyperlexia.  It is not a stand-alone diagnosis but it was possible this was part of Imma’s gift.  Hyperlexia is the opposite of dyslexia.  It has different forms, like all conditions,but it is generally characterized by an over-emphasis and fascination with letters, letter sounds, numbers, reading, the alphabet in general.  There were other factors that indicated Imma might be hyperlexic.  Most hyperlexics have speech delays but are extremely agile and coordinated.  Hyperlexia manifests about the same time thatwe started noticing differences with Imma. The more I looked into hyperlexia the more I thought, “This sounds like my daughter.”  Unfortunately, very few people are familiar with hyperlexia and there is no “treatment” program for hyperlexia.

After several lengthy discussions, my husband and I decided to place Imma in the STC classroom for the 2011-12 school year.  Our main reason for doing so was that we wanted to give her the best possible chance at being able to attend regular kindergarten.  We were under the impression that, if she worked extremely hard all year, picked up a lot more skills, and was beginning to speak by the end of that year, she would be able to attend regular kindergarten with minimal special education support. The teachers were very happy that we had agreed to put her in the STC classroom and assured us this was the best place for her. We met her teacher and though she was wonderful.  Kind, loving, extremely professional, clearly very knowledgeable about her area of expertise. We really thought Imma would do well in her classroom.

We also enrolled Imma in private therapy during the summer.  We thought she could benefit from as much help as possible, as we made the Push To Kindergarten.  We drove an hour each way from our home twice a week so she could attend two half-hour sessions of speech and one half-hour session of OT (Occupational Therapy).  We loved her therapists and thought they were teaching her some great skills.  Most importantly, I felt like these therapists were listening to my concerns a lot more so than the staff of Imma’s school. 

If there is one thing I hope you get from this particular post it’s this:  My daughter works harder than anyone I have ever met.  And she doesn’t get enough credit.  Imagine if you will that you are in a foreign country. No one speaks the same language as you. You’ve had no lessons in their language and you can only understand a handful of words.  And these people are constantly telling you to do “something.” They are giving you directions, minute by minute.  Do this, do that.  But you have no idea what they aresaying.  This is my child’s life at school. This is her reality.  Not only does she have no idea what is being said, at school, in the STC unit, she had no role models to observe and follow. She couldn’t read the autistic kids to see what she was supposed to do because they didn’t know either. But she kept on trying and working.  She began to slowly acquire new skills. Her private sessions were also very helpful and we continued them through the school year.  A long trip, twice a week, after an exhausting full-day at school, was tough on a four-year-old and her baby sister.  But they did it because I asked them to.  This was the Push to Kindergarten. And it was critical.

Imma in October of 2011

Around October, Imma’s hard work was rewarded. Instead of spending the full day in STC, she would be going to a regular PPCD class for half of the day.  This was good news.  This was a step towards normal.

Then December hit and something happened.  I don’t know what it was but Imma’s behavior tanked, hard.  She began acting out like nothing I had ever seen before.  She was hitting, biting, kicking, defying her teachers, being rude to her classmates and friends.  She was acting out at home,too, hitting her sister, disregarding our instructions.  Something was very wrong.  We had parent-teacher conferences in December, in January, in February.  She was kicked out of daycare in March, no longer allowed to come back because she was too dangerous, too mean to the other children.  I thought maybe she had a poor example in the STC classroom but the teachers assured me this was not the case.  I was beside myself.  I had tried everything I could think of;punishment, reward, threats, everything. Nothing was working.  In April,she was kicked out of another daycare. We were on our Push to Kindergarten and this behavior was detrimental to the cause!

In April I was asked to come in and observe Imma in the PPCD classroom.  The teachers were beginningto  build their case for STC  the next year.  I knew this because I am a teacher.  I could smell it in the air. I could hear it in the tone they used when they talked about Imma’s progress.  Academically, good. Speech, good.  Behavior, terrible.  But the pluses did not outway the minuses.  I knew they were going to recommend STC and I was preparing to fight it.

Imma and her sister Lucy in December, 2011

I went and observed and made mental notes.  Imma was compliant while I was there. She did several things that indicated to me she was ready for kindergarten.  Imma may not speak well, but he gets school.  She had been in school for two years and she knew how to “do school.” Her behavior was actually getting better at this point.  Academically, she had almost all of the skills she needed for the first semester of kindergarten, and I knew this because I taught kindergarten for four years.  When we met to discuss her placement for the next year,  I proposed all day kindergarten. I was countered with the other extreme.

Something I didn’t mention and probably should have.  Throughout the entire school year, whenever I met with staff members of Imma’s school, they consistently referred to her “autism.”  They said she was categorized as having “EarlyChildhood non-categorized autism.”  They implied that this was a diagnosis.  I knew my child did not have an official label of “autistic” but because theyconsistently referred to her “ECNC” placement, I was under the impression that this was an actual special education qualification. IT’S NOT!  If anyone ever tries to convince you that your child should be in an autism unit or follow an “autism schedule”because they are labeled as ECNC, contact me immediately.  I’m not kidding.  This is not a qualification for special ed.   If I, a teacher, can be fooled,anyone can.

Imma in April, 2011

When we met to discuss Imma’s placement, the principal whom was conducting the meeting told us that she had to follow the recommended “autism schedule” because of her autism.  I politely reminded her that Imma was not autistic.  She politely explained that the ECNCqualification meant that she would benefit from the autism schedule.  The proposed schedule showed only 20 minutes in the regular education classroom.  20 minutes per day, out of a 7 ½ hour day. I wanted the exact opposite.  I was again reminded that we had to use the autism schedule.  I finally got a little worked up and said, “Show me one piece of paper that says that my daughter is autistic and I’ll agree to it right now!” Of course they couldn’t, because she isn’t.

At the end of this meeting, which was not Imma’s annual review but a pre-meeting the staff had arranged to test the waters, we were asked if we were going to contest the committee’s recommendation.  My emphatic reply, “No, I’m not prepared to disagree with the ARD committee’s recommendation, but I am prepared to pull her out of this school district.”

The Journey to “Normal,” Part 3: Our First Attempt at Therapy

Imma in November, 2009, just before she started therapy.

From the time Imma was 2 ½ until she turned 3 in June of 2010,she had sessions with both a speech therapist and an occupationaltherapist.  In December of 2009, I wasextremely 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 withspecial needs children who say things like, “My child doesn’t need fixed.  S/he’s perfect just the way s/he is.” Or, “Ifmy child could do x, y, z, s/he wouldn’t be the same person.” I get that, Ireally do.  I totally understand thatImma is who she is because of her disability and as much as I love who she isand would never trade her for anyone, that does not mean that I want her tohave 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 canspeak and understand verbal communication. So, why would I want my child to try to navigate in life without thosebasic skills?  Of course I want her tocontinue to have all the amazing gifts she has. Imma is extremely gifted inmany areas, especially when it comes to math and spatial reasoning.  I’ve literally watched in amazement as shehas put together complicated puzzles quickly, just by glancing at the shape ofthe piece she needs next.  No, “do thecorners first and then the edges,” she doesn’t even need a picture.  She can just look at the shapes and put ittogether. She can subetize like no child I’ve ever seen before, though she’snot exactly Rainman with the box of matches yet, though she is gettingthere.  If Imma tells you she sawsomething somewhere, it was there.  Ihave multiple examples of me telling her that’s not possible, you didn’t seethat, and then I’ll find out that yes, she did, it really happened.  She is highly visual, has almost aphotographic memory.  She has a lot oftruly amazing gifts.

But if you don’t speak “Imma,” it doesn’t matter, becauseyou’ll have no idea what she is trying to tell you.  And 99.9% of the people on this planet don’tspeak Imma.  So I want(ed) her to be ableto talk.  I want(ed) her to understand whatpeople were saying to her.

And ECI (Early Childhood Intervention) was going to fixthat! Or so I thought, at first, for a few weeks.

The speech therapist was a very nice YOUNG lady who came toour home once a week. She played with Imma, tried to engage her in differentactivities. I joined in the sessions. We would drive cars on the bed and saythings like, “Truck go!  Vroom, vroom!”  Imma would crash the cars into eachother.  We would put people in the carand say, “Go in!”  Imma would sometimestry to repeat us, and then crash the cars. We would “cook” dinner at the play oven. “Stir, stir, stir.”  Imma wouldsometimes smile and attempt to say something that was maybe “stir” or maybenot.  At the end of each session, I wouldask  questions.  “Why isn’t she trying to talk? What can I doto help her?  What if she is justrefusing to talk?”  And I would get thesame answers. I am a teacher—an Early Childhood Certified professional—and Iwould be given the following advice, “Play with Imma, talk to her about whatyou are doing.  Use short, two wordsentences.  Read her stories. Talk aboutthe pictures.”  Really?              DOYOU HONESTLY THINK I HAVEN’T BEEN DOING THAT FOR THE LAST TWO-AND-A-HALFYEARS?? When I would say things like that, I would get the same answer, “Justkeep trying.  She’ll get it.”

And I don’t think that the therapist didn’t want to help ordidn’t love Imma. I think she didn’t know what else to say.  That was the standard answer for non-verbalchildren, regardless of who the parent was and regardless of what theunderlying problem was.  So she continuedto come, we saw minimal progress, I grew more and more frustrated, and Imma washappy and non-verbal.

Now, non-verbal does not mean quiet. I want to make sure Iexplain that. Imma made plenty of vocalizations.  She could say some words.  In fact, it was about this time when Istarted making a list.  I made an excelspreadsheet of all of the words she said, the date that I heard them, if I knewwhen it was, phrases, songs she had attempted to sing.  I was taking this extremely seriously.  I was trying to prepare for an attempteddiagnosis and I wanted diagnosticians, doctors, psychologists, specialists,whoever, to know exactly what my baby was capable of, whether she was willingto do it for them or not.

Most of the words Imma said had to do with food.  These were the things she was requesting, thethings she really needed.  “Cookie,” “cup,”“water,” etc.  And some words I think allkids know, such as emphatically screaming, “NO!” when she didn’t wantsomething. The areas where Imma was struggling the most had to do with answeringquestions and responding to every day conversation.  I have since learned that those every dayscripted conversations that we all have are called intraverbals. Intraverbalsare the words we use to fill the void of conversation, they are the responseswe choose in order to respond to others in a way that makes sense.  And the majority of what we say really is scripted,if you think about it.  What do yougenerally say when someone asks, “How are you?” “Fine, thank you. How are you?” That’s what I say the vast majority of the time.  In fact, look at the phrases we use when wewrite.  How often do we use the word “vast”in conversation?  Rarely, but when youjust read the phrase, “vast majority of the time,” did that sound unusual toyou?  Probably not because that is aphrase we use often when we are writing, sometimes when we are talking.  Those words go together.  You and I learned what words go togetherthrough a natural process when we were toddlers.  We had to experiment a little, but our brainsare naturally programmed to pick up on how other people use language.  We process it so quickly we don’t even stop tothink about it.  We don’t need anyone todefine abstract concepts like articles “the” and question stems like “why.” Ourbrain has just learned how to do that. 

Imma’s brain didn’t develop that way.  She has to learn what each one of those wordsmeans individually.  Now, at 5 ½, she canremember phrases, often from movies or television shows, and she is good aboutinserting them into conversation when they make sense, or almost make sense,but her brain, for whatever reason, does not automatically create that dialoguefor her.  That is a lack of intraverbalskills. The only way she is ever going to learn how to do that is if someone A)figures out how to teach her brain to pick up on those phrases and understandthem or B) teaches her the meaning of every single word in the Englishlanguage, including abstract ideas, articles, and other miscellaneous words wedon’t even consider when we talk because they just come naturally.

I decided to add this information now because I hope some ofyou will find it useful, not because I had any idea when Imma was 2 ½ that thiswas the problem. I have only come across this information recently.  However, when she was 2 ½ and we just startedworking with the speech therapist, Imma was not progressing and if I had knownthen what I know now, I’m not sure I would have continued in that program.  The tools ECI was using to try to teach herhow to speak weren’t working, and they could not possibly have worked because shewasn’t capable of doing what they wanted her to do.  It was as if they were trying to build ahouse where there was no ground.  Itdoesn’t matter how strong the timber or how many nails you put in, if there isno ground, your house won’t stand.  Andyes, I meant to say ground, not foundation, as your brain was trained topredict.  A house with no foundationwould have a much better chance of having some semblance of standing, at leastmomentarily.  A house with no ground doesn’tstand a chance at all.

But we pressed on. 

Imma, age 3.

 The therapist came, told me to keep doing what I was doing. The OT wentto pre-school once every two weeks and left reports that Imma wasn’t speaking,wasn’t playing with the other children, barely made eye-contact, but was happyand squealing and cute-as-a-button. The teachers continued to tell me howconcerned they were and that they didn’t make Imma do the things the otherchildren were expected to do, like stay with her group or finish her project,because they weren’t trained to teach a child like her and they didn’t know thetechniques it would take to make her comply. She wasn’t a behavior problem, she just didn’t understand.  No, the behaviors would come later.  Pre-school became a daycare and my child wentto a place for eight or nine hours a day where no one knew how to help her.

And I got tired. Tired of trying to figure out how to help, tired of trying to figure outwhat was wrong. Tired of listening to other people who didn’t understand mychild.  Tired of hearing what she couldn’tdo.  Tired of hearing what I was supposedto do, which was usually what I was instinctively doing.  I kept looking, kept trying to figure outwhat was wrong with her.  I looked intoapraxia of speech, selective mutism, language processing disorders.  Again, these all seemed to fit, but notexactly.  It wasn’t until the very lastsession Imma had with ECI, the one right before she turned three years old andwould be become the responsibility of the school district that the therapistfinally mentioned the word I’d been terrified to hear.  At our last session, she handed me somepamphlets and said, “I think you should read these. It talks about differentoptions for diagnosing and treating autism.”

There it was, the “A”word, hanging out in the air between us, charting it’s course to my heart justas lethal as any bullet.  Autism.  In six months, neither therapist had evermentioned the word, written it on any of the reports we had gotten, given usany information about it.  But, as sheexplained, that’s what she thought was wrong. She thought my baby had autism. And, while treatable, autism is a life-sentence.  You don’t get cured from autism.

At the time, I felt that we were at the very bottom of thevalley, down in a chasm, away from all light and hope.  But I was still hopeful that we would find apath out of this darkest of corners.  Even with the therapists both explaining thereasons why they were fairly certain that Imma was autistic, I still chose notto believe it.  I really started digginginto every aspect of the condition.  Ilooked at the causes, the symptoms, the treatment, the prognosis.  I needed more proof.  I needed a diagnosis.  It was when the school district was in theprocess of evaluating Imma to see if she had autism that I found out there wasan entirely different level of depth to that valley, one that I couldn’t evensee on her third birthday.

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.