Right after Imma turned 3 years old, we went through theprocess of having her tested to see what, if any, pre-school programs she wouldqualify through the school district we were living in at the time. I say “if any” because, believe it or not, atthe time, I still thought she wasn’t so severely disabled that she wouldqualify for the most severe of programs. There were a few different options and I thought she would probablyqualify for PALS, the speech program that services children who have onlyspeech delays. The other possibility wasPPCD, Pre-school Program for Children with Disabilities. I did not think Imma’sdisability was pervasive enough to qualify her for inclusion in thatprogram. After all, the only disabilityshe had been diagnosed with was for speech, nothing else.
But like everything else along this journey, I was told inno uncertain terms, not only did my child qualify for PPCD, she needed to be inthe special class, the class that serviced children who were suspected ofhaving more severe disabilities. Again, I was shocked. I was serving as Summer School Principal whenI got the call from the principal at what would shortly be Imma’s campus. She asked if I trusted her to do what wasbest for Imma. At 9 months pregnant,working full-time, and taking care of a 3 year old, of course I said I trustedher. After all, we were colleagues. We worked for the same school district. We’d known each other for years. She’d even interviewed me for a job at onepoint. Yes, I trusted her. Put her where she needs to be.
I want to pause here to discuss the complicated nature ofwriting this particular installment. Ino longer work in the school district where this took place, partially becauseof the way certain events transpired during our journey with Imma. However, it would not at all be difficult foranyone who really wants to know to go back in my history and figure out who Iam talking about in this post. Let mesay a few things regarding why I am choosing to make my perspective publicrecord. First, I in no way believe that any of the teachers Imma was blessed towork with during her time at this campus ever wanted to do anything but help mychild. I believe that almost everyone onthat campus truly had her best interests at heart. Her classroom teachers, aids, most of thepeople that did her testing, all of them were wonderful and I am glad that shehad the opportunity to benefit from their work. However, I do believe, attimes, there were other individuals whose judgment about what was best for mydaughter was either clouded by their disdain for me, lack of a moral compass,drive for funding, or deficiency in professionalism. Whatever the cause, as you will see, Imma’stime at this facility is marked by pitfalls and valleys. I mention them for the same reasons that Idecided to post this in the first place. I hope that some of you will benefit from reading this, so that you may seethe errors we made and learn from them. So that you can understand what your rights are and avoid some of thecatastrophic events that we traversed.
Imma also made a lot of progress in speech while she was inPPCD. She had a wonderfully energeticyoung teacher who was experienced enough that her youth did not prevent herfrom making a difference. Imma went for half a day at first, and later we addedan additional hour. She rode the bus,which she loved. They had a special busfor little people. She had speechservices at school and they were doing a program called ABA or Applied BehaviorAnalysis. If you are not familiar withABA and your child has a speech delay or has some other disability similar toImma’s, I highly suggest you look in to it. I have done an extreme amount of research on ABA and the vast majorityof sources say that it works very well for children with autism. It’s all about repetition, breaking skillsdown into the tiniest parts possible and then adding on as a child masters onetiny piece. It worked really well for Imma at first. She was beginning to pick up some language,she was beginning to be more responsive. The teachers marveled at her progress and wanted to continue to workwith her using the same methods because they were working so well.
Imma's 1st day of PPCD
We were very happy with the progress she was making. We met with her teachers often and I alwaysreiterated that it was extremely important to me that Imma be ready for kindergarten. They would always nod and smile and say therewere doing everything they could to help Imma. I guess I really didn’t have an understanding of how severely disabledthey believed Imma to be. Keep in mind that I work with students whom aresuspected to have learning disabilities. Some of you may be reading this and wonder if I am any good at my job,since I keep stating I work to identify kids with disabilities but it appears Iwas missing a major problem with my own child. To address that I would say,yes, I am very good at my job. I was oneof the best RTI (Response to Intervention) specialists in the district that Ileft, which had several. In fact, that was one of the reasons I was hired formy current job. The problem with Imma wastwo-fold. First of all, I did not see the same child at home that they saw atschool. They would often tell me aboutthings she “could not do” or “could not say,” and I even started recording herso they could see she could do and say those things. The other problem is that it’s almost alwaysmore difficult to accept that there is something “wrong” with your own child.
Imma really loves letters and numbers.
From the beginning, the school district wanted to evaluateImma for autism. At first, we said no.We didn’t see what difference it would make. They kept assuring us that herprogram (the therapy she was getting at school) would not change whether shewas labeled or not. So we declined. In November 2010, when Imma was almost 3 ½,we finally consented to an autism screening. They felt the screener would giveus some valuable information. A screeneris not the same as an evaluation. Ascreener consists of a questionnaire to the parent and an observation by adiagnostician. The process fordetermining whether or not a child has autism consists of looking at threedifferent areas and it is up to the observer’s discretion as to whether or notthe child has enough characteristics in these three areas to warrant anevaluation. The observer looks at socialinteraction, speech, and emotional response. At the conclusion of the observation, we were called in to confer withImma’s teacher, her speech teacher, and the diagnostician. They concurred that Imma would benefit froman autism evaluation. I asked a lot ofquestions, specifically regarding the evidence. I am a numbers person, I wanted to see some quantifiable data to show mewhy Imma needed to be evaluated for autism. They did not have that but the diagnostician was willing to write up areport.
It was when I received this report that all Hell broke loose.
It was several weeks after the screener that I received thereport. It came home in Imma’sbackpack. I had asked for someclarification during the meeting and was assured it would all be in thereport. It wasn’t. I had no more answersafter I read the report than I did before. In fact, I had more questions. Ifelt that I had asked enough questions of Imma’s teachers and the diagnosticianwho had done the evaluation and that I needed to talk to someone I trusted whocould explain the report to me. Mostimportantly, it was mentioned that Imma would benefit from being placed in theautism unit, something I had previously been assured would not happen. So, Iwent to a friend of mine who happens to be a diagnostician and I asked her toread the report and explain it to me. Shewas kind enough to read it, but she told me what I already knew. In her professional opinion, there was notany indication in the report that Imma was autistic or that she would benefitfrom being in the autism unit. She askedme if I had asked the team at Imma’s school about it and my frustration musthave come across pretty clearly because I told her I had asked many times and Istill didn’t understand why they were sosure my baby was autistic. I thanked her for her time and went on about my day,glad that I had friends that were willing to loan me their professional judgment.
The next morning I was called into my supervisor’s officeand told that I was no longer allowed to speak to anyone on my campus about mychild’s disability.
Apparently, I had caused a riot at Imma’s school the daybefore. Everyone was in an uproar overthe fact that I took the report to someone else. That I had dared to, as a parent, speak toanyone else about what was going on with my child. In fact, Imma’s principal came over to my campus, sat down in my office, and toldme, in no uncertain terms I was never, ever to question members of her staff toother professionals in the district ever again—if I wanted to have a goodreputation in the district and if I ever wanted to be an administrator. Have a nice day. She thought better of someof these statements since, mind you all of this is extremely ILLEGAL, and saidshe wouldn’t recommend talking to anyone else about such reports, though as aparent I had every right to hand it out in “the carpool lane” if I wantedto. And that’s what I would like for youto understand. As a parent, you have theright to talk to anyone and everyone about your child’s disability. And in most cases, I encourage you to do so.It is always helpful to hear what other professionals, other parents have tosay. But I was being discouraged fromdoing so.
If your reaction is anything like mine was then you areprobably asking, “What the crap?” right now. I was, too. It’s been over twoyears and I still cannot figure out what in the world the problem was. I found out my friend had called to talk toone of her friends at Imma’s campus because she wanted to know why they wererecommending an autism unit under the circumstance. Another contributing factor may be the factthat the report had 19 spelling errors in it, my child’s name was spelled incorrectly everytime (which was 11), her teacher’s name was spelled incorrectly everytime, and the diagnostician hadaccidentally left another child’s name in the report, which is an indicatorthat she was using a form, not drawing up a new report from scratch. None of those things mattered to me as aparent. They do as a professional educator, but not as a parent. I was looking at the content. But I believe everyone involved was embarrassedthat such a document ever went to a parent.
And then there’s the fact that it was me. Unbeknownst to me at the time, there weresome people in that district at that time who preferred to see me fail in myquest to become an administrator. There’s also the fact that I can be very intimidating when I speak to othereducators, if I chose to be so, and I think I may have come across that way insome of the discussions I had had with professionals at Imma’s campus.
Nevertheless, that does not excuse the abominable way thisevent unfolded. It created a pretty deepchasm between my family and the staff of Imma’s campus. I am a compromiser, I like to keep thepeace. I did whatever I could to repairthe damage. I promised to keep my mouthshut, to play nice, to keep my documents to myself. I met with the teachers and we were nice toeach other. We decided there should be anotherobservation by another diagnostician, one who was not aware of what hadhappened the first time. We waited untilafter Christmas and had another observation done. This one did not include areport, just a meeting and a verbal recommendation to move forward with anautism evaluation. So we did.
By the spring of 2011, Imma was making good progress but shewas still far behind. She was startingto interact with the other children some but we started to see a little bit ofmisbehavior as well, “bad choices” in teacher-speak. She was coming out of her shell some but shewas having more break-downs. She had ababy sister so she had to share the attention. She was struggling with the understanding that she wasn’t like everyoneelse.
Storybook character night
The school psychologist who performed the autism evaluationwas extraordinary. Of all of the peopleI have met along this journey, I feel that she was the kindest. I don’t mean polite, though she was that aswell, but she has an extremely kind, empathetic heart. She is the type ofperson that can make you feel completely understood and as if her only purposein life is to help you. I very much appreciated the way she performed the evaluation,the way she gathered the information she needed from us, Imma’s parents, andthe way she responded to Imma.
In the end, she came to my school to meet with my husbandand I to tell us what she had found. Iasked in advance if she could just go ahead and tell me if Imma was autistic ornot. She explained that she needed to goover the document with us and couldn’t just say yes or no in an email. I tookthat to mean she had determined that Imma was autistic and when we met withher, I braced myself for the inevitable truth. If nothing else, at least we would finally know the answer to, “What’swrong with my child?”
Except she couldn’t tell me that Imma was autistic. Because the evaluation did not conclusivelydemonstrate that Imma was autistic. Atthe time that Imma was evaluated, there were 4 diagnoses that would have placedImma under the umbrella of having Autism Spectrum Disorder. Those diagnoses were autism, Asperger’ssyndrome, Rhett’s Syndrome, and Pervasive Developmental Disorder. Imma was borderline in three of those areas,all but Rhett’s Syndrome, which in my opinion probably never belonged with theother three. But on the quantifiablescale used to determine whether or not Imma was autistic, this evaluation saidno. It said she was not autistic. It indicated that she may possibly qualify asbeing autistic in the future if she did not continue to make progress, butbased on her age, they could not label her as being autistic at that time.
Imma at almost 4 years old. Never turn your back on an Imma.
I remember the sweet doctor asked if I was alright after shegave me the news and making the statement that she would probably be shaking ifsomeone just gave her the devastating news that her child was very close on thescale of being autistic. But I was elated. I felt like this was a victory! I had fully expected to be told my child hadfull-blown autism and that is not at all what I was told. In my opinion, having a test tell you yourchild isn’t autistic, means your child isn’t autistic! And though it would have been nice to finallyhave an answer, I would much rather have continued to hang out in the limboland of unknowing than to have a diagnosis of autism. So, while my husband and I were overjoyed,not everyone was. A victory for us,unfortunately, meant there was a loser. And the powers that be were not about to letus take our non-autistic daughter and be on our merry way, not when there wasstill an autism unit to contend with.
