Traveling Back In Time Via the Telephone

I received a phone call from a very good friend this afternoon while my daughters were opening their Christmas presents from Grandma.  I wanted to take it but I couldn't tear myself away from the giggles of glee coming from two little girls who had just received their version of a Red Rider BeeBee Gun in the form of Cuddleuppets. So I let it go to voicemail. When I finally got the opportunity to listen to the message, it was one of those sickening feelings moms of special needs kids get when they hear the oh so familiar story about a child very similar to their own whose parents don't know what to do. It's the kind of phone call I dread but also welcome with open arms.
My sweet friend used to teach in the same district as I did, same job, different school.  She left at the same time as I did as well, for similar reasons. In her message she explained that she has a friend in a similar situation as Imma was. No diagnosis but a big push for a specialized classroom with limited access to typically developing students.  She described the frustration, anguish, and exhausted state that I felt myself in so often when she talked about how the mom who feels lost, confused, and alone. She said she just couldn't understand how they could put her child in a classroom like the one they were pushing for without a diagnosis.  The mom just doesn't know what to do and they were hoping I could help.
Of course, I would love to talk to her and let her know our story.  I don't know her, don't know if she has similar options to the ones I had--which ended up in essentially taking my toys and going home instead of staying and fighting--or if she is in a situation where she will have to go the distance.  But I will do whatever I can to help this family because I know first hand that placing a child in a highly restrictive environment often creates restrictions on their ability to grow and develop while allowing them to participate in a general education classroom can create the opportunity for enormous amounts of growth.
I hope I have the opportunity to speak with this mom soon. I want to reassure her that she has the strength to fight for her child, if that's what she intends to do.  So often we feel hopeless and helpless in situations where institutions tell us what we are going to do with our children.  We should never feel that way. She may have to face the demons I was able to avoid but I will gladly stand with her and fight as long as we have to, if that's what's best for this sweet baby.  I certainly don't have all of the answers but I have learned so much more from walking through the fire myself than I ever dreamed I would before I took those first steps.
A wonderful friend of mine told me when I was beginning this battle, "Amy, you and Brian are the only advocates Imma has and it is up to you to always do whatever you must to stand up for her.  You are her mother and advocate first and everything else must always be second." That is so true. If we don't advocate for our children, who will? The decisions we make today could very well impact them for the rest of their lives so we must be decisive and sure-footed, no matter how jagged and foreign the road we traverse.
Hopefully, I will at least be able to inspire this mom to keep doing whatever she needs to do for her child.  At the very least, she will know that she is not walking alone.  There are so many of us who have walked the road before her and we will walk it again, with her, for as long as she needs us to.

Acronyms, Abbreviations, and ARDs: What in the world are they talking about??

One of the most confusing parts about being the parent of a child with special needs is trying to understand the lingo.  Educators use a lot of acronyms and other words specific to special education when they are talking about your child and it is very important to make sure that you understand exactly what they mean when they use these abbreviations and jargon.  If you are not sure, ask.  I can’t guarantee that they won’t make you feel like you should have known what they were talking about but wouldn't you rather look uninformed than have your child placed in a program you didn't understand because you didn't ask? You can always ask me, too, if you aren't sure.  I know what most of it means and if I don’t know, I’ll be willing to find out for you!

Let’s talk about some of the words you will hear again and again. The first one is “SPED.” SPED is an abbreviated way that teachers talk about special education.  You may hear a teacher refer to themselves as a “SPED” teacher or they may say, “I’m SPED.”  They might also refer to a student as being SPED.  This is just a quick way of saying a teacher or a child is affiliated with special education services.

Another acronym that was tossed around a lot at Imma’s meeting is, “AU.”  AU is one way of referring to autism.  You may also hear, “The student has (or is) ASD.”  This means “autism spectrum disorder.”  When an educator uses the terms AU or ASD, they are saying that a child has been identified as having autism or one of the disabilities previously group with autism, which include Asperger’s, Rhett’s Syndrome or Rett's Disease, and Pervasive Developmental Disorder (or PDD). The law has recently changed and students are now identified as having an Autism Spectrum Disorder (ASD) or not. There are no longer subcategories.  That does not mean that these terms will no longer be used as it always takes a while for the correct verbiage to filter all the way through the system.  Also, please keep in mind that the child should always come first when you are talking about a disability.  Teachers should be saying, “a child who has autism” or “a child identified as having autism disorder” never “an autistic kid” or “he’s an autistic.”  We want to put the child first.

Depending upon what the area of disability is, you may hear other abbreviations in your meeting.  Sometimes teachers use the abbreviation “MR.”  This means “mentally retarded.”  This is a phrase that some people toss around as an insult but it should never be used that way and if you ever suspect an educator is using this word incorrectly, please say something to him or her or a supervisor.  There is a clearly defined “Intelligence Quotient” ( or IQ) that determines whether or not a person is classified as mentally retarded.  It is just as much a disability as any of the other disabilities we are discussing and should never be used as an insult. 

Another abbreviation you may hear depending upon the area of evaluation is “LD.”  LD stands for “learning disabled” or “learning disability.”  This means that a child has been identified as having great difficulty acquiring skills in one or more areas due to certain factors, which the diagnostician has been able to quantify.  There are a lot of diagnostic tests that go into reaching the conclusion that a child has a learning disability and diagnosticians tend to use a whole other lingo to talk about this so we won’t go into that today but you may need to know what they are talking about if the committee says, “I believe your child may have an LD.” 

The Individuals with Disabilities Education Act, or IDEA, is the law that regulates who is identified as qualifying for special education, how they are identified, what services are to be provided, and how those services must be provided.  You will receive information about IDEA before the testing process begins and at every committee meeting.  If you do not receive a guide for IDEA, please ask for one. Once you receive it, please read it. It is not an interesting read. It is extremely wordy and boring.  But you need to read it so that you know exactly what the other members of the committee are talking about.

You may be asking what committee I am talking about.  This varies from state to state, but in Texas, this committee is called an ARD committee.  ARD stand for Admission Review and Dismissal. This is the committee that determines: 1) if a child qualifies for special education services 2) what goals and objectives need to be worked on 3) how those goals and objectives will be taught 4) how to determine if goals and objectives are met 5) the environment the child will be learning in (or placement) and 6) if and when a child will be dismissed from special education services.  This is extremely important because you are a voting member of the ARD committee.  Again, the other members may vary by state but you will always have an administrator (principal or assistant principal), a general education teacher, a special education teacher, and a diagnostician or specialist in the area that was tested.  All of the committee members will either agree or disagree with the recommendations.  You have the right to disagree so if you think you need to use it, do so.  Most of the time, the specialists are going to have all of their ducks in a row and they are going to have already determined what the qualification is, the goals, measurement of those goals, and the placement of your child.  Ask a lot of questions while they are talking about the goals and the placement. If you don’t understand, ask for clarification.  If the committee members cannot answer your questions to your satisfaction, ask for someone else to come in and explain things to you.  This is your child and you need to know what they are talking about.  Don’t let the lingo throw you off or intimidate you.

One of the most important decision the committee makes involves adopting goals for the student’s Individual Education Plan (IEP).  Basically, this document takes the place or supplements the regular school curriculum.  The committee determines what goals your child needs to work on and in what order. This should be based on the diagnosticians report and/or your child’s class work.  If you feel like your child has already mastered these goals, speak up. Sometimes children act or perform very differently at home than they do at school and if you don’t say anything, your child could waste a colossal amount of time working on something s/he already knows how to do.  For example, I was once told it took 120 trials with my daughter to get her to learn what an ice cube was.  I said, “My daughter knows what an ice cube is.  She’s known that for a long time!”  But they weren't seeing it so it “didn’t count.”  They also told me she didn't know what a pond was.  We have a pond in our front yard.  She knows what a pond is.  Children act differently and say different things at school. My child wasted a lot of time that year trying to “learn” things she already knew because she wasn't showing her teachers what she knew.  Have these discussions with your child’s teachers because they don’t want to waste time either.

 This is a lot of information—and believe me, there’s plenty more where that came from!  But I am only going to mention one more piece of lingo to you in this article.  I want to make sure you know what the phrase “least restrictive environment” means.  In special education there are several choices of where your child can receive services.  They can receive services in a general education classroom (regular classroom) through their general education teacher and a special education teacher who comes in to the classroom and helps support your child. This is called “inclusion” because your child is included with the other non-disabled students.  It could also be a special education aid who provides these inclusion services.   The next level of restrictions is called “resource.”  This is when your child leaves the general education classroom for an agreed on amount of time and goes to the special education teacher’s classroom to work on the IEP goals and objectives set by the committee. Your child may have other students with him or her or s/he may be alone, depending upon the size of your campus and how many special education teachers there are.  The amount of time your child spends in the resource classroom must be agreed upon by the committee, including you.  If you feel like your child is spending too much time out of the classroom—or not enough!—speak up.   The most restrictive environments are special  classrooms, sometimes referred to as “units” where the child spends all or most of his or her day with the special education teacher and little to no time with a general education teacher.  An example of a unit would be a Life Skills classroom, where moderate to severely disabled students learn the skills they need to be successful in life. This is sometimes referred to as a Functional Academics Classroom (or FAC.)  There are also units for students who have Emotional Disturbances (ED) that create behavior that disrupts general education classrooms and there are Autism Units, sometimes referred to as Structured-Teach Classrooms where students who have qualified to receive special education services because they have been identified as having autism can be placed.  Structured-Teach is just a type of learning where the teacher goes through a series of lessons with a student following a particular order and these lessons are usually on a one-to-one or very small-group basis.  You can learn more about structured teach classrooms here.  Most structured teach classrooms are set up following Applied Behavior Analysis (ABA) and if you hear that term used when referring to your child’s education, please do as much research as you possibly can.  One source of good information is Autism Speaks and you can find the ABA link here.  

So, when we say that a child needs to be placed in the “least restrictive environment” what we are saying is your child needs to be in a classroom where s/he will be able to learn what s/he needs to learn with as few changes in schedule as possible.  If your child is in special education,  by definition, the general education classroom alone was not sufficient enough for him or her to be completely successful.  You want to consider inclusion next, followed by resource, and one of the special units as a last alternative.  Never let an educator try to take these rights away from your child.  If you find an educator who is unwilling to try a less restrictive environment before placing your child in a more restrictive environment, it’s probably time to call in an advocate, or possibly even a lawyer.

I’m not saying that some children don’t need to be in a restricted environment, nor am I saying that some diagnosticians can’t immediately look at test results and draw this conclusion.  However, sometimes, as in my own case, the most restrictive environment was the only one considered by the other members of the ARD committee and when I refused to place my child in the most restrictive environment without trying  the alternatives first, well, let’s just say I ruffled a few feathers.  There is a disagreement process in every state.  Know what it is in yours and don’t be afraid to follow it.  Luckily, I was able to move my child to another school district and she know spends the vast majority of her day in the general education classroom.  She has inclusion for part of math and part of reading.  She also has 20 minutes of resource a day and she is pulled out for speech two times a week. That’s it.  The rest of the time she is in the regular classroom like everyone else.  The ARD committee at our previous school district told me she could not possibly be successful in a general education classroom. Like most things, Imma has proven them wrong in this as well.

Was this helpful?  What other question are out there?  What other abbreviations or acronyms are you hearing?  What other resources would be useful?  Please let me know and I will happily write some more about this topic.  I have a list of some other resources available at the end of this post.

My beautiful daughter, Imma-Jane

Autism Speaks

IDEA

Wrightslaw

National Center for Learning Disabilities

The Journey to "Normal," Part 6: Kindergarten

First of all, Merry Christmas Eve to all of you. I debated about whether or not to post this today but I'm certainly not posting anything tomorrow so I am writing it ahead of time and scheduling it to post. I hope y'all get to spend some quality time with your families and experience at least one excited child because there is nothing like the joy of a child at Christmas. Let's get back to the journey . . . .

 I quit my job. After 8 years at the same school district, where I had at least 50 friends I would seriously consider best-friends, call them in a second friends, and more connections than I could ever possibly to count, where I had hundreds of kids I worked with, loved, and wanted to keep in my life, where I had countless promises of becoming an administrator someday, I walked away. I did it for my daughter. It was the fourth best decision I ever made (I'm married and have two daughters, you can do the math.) When I made the proclamation at the pre-ARD (Admission, Review, Dismissal) committee meeting that I was willing to pull my child out of the school district, it was for two reasons that I was able to confidently make that statement. First of all, we had already moved a year before and Imma was attending school there solely because I worked there. Switching her would be no problem. I, on the other hand, needed some more assurance before I took my own toys and went home. Imma and I are a package deal. I felt emphatic about the necessity of her being at the same campus I was on. The campus I worked on at that district did not have an autism, STC (Structured Teach Classroom) so if we stayed there, we would have to be at two separate campuses. They were not budging on putting her in regular kindergarten and I wasn't budging on keeping her out, so I quit.

 When I interviewed for my current position, it was as if God was putting all of the pieces in place, just for me. I am the first and only Reading Specialist this district has ever had. They needed a teacher with a background in RTI (Response to Intervention). Both of those two areas are where I excel. They also wanted someone certified to work with second language learners and a potential administrator some day. That's me. My interview went really well. I immediately felt welcome and loved the campus and the principal. I was in awe of the central office representative who came over (and still am!) as she is amazing and everything I aspire to be someday! And the teacher who sat in is now one of my best friends. For me, it was meant to be. But I was also interviewing them. I asked about an autism unit. The principal explained that they didn't have one. They put autistic kids in regular classrooms with whatever support they need and provide training as necessary. The central office representative elaborated by saying, "We rarely see any need to remove autistic children from the regular classroom. They can handle the academics, we just have to support their behavior." I remember asking her if I could hug her. I really wanted to! That was exactly what I needed to hear. A few days later I was offered the job. They could have paid me in skittles and I would have taken it.

 So sitting across from Imma's principal and telling her I was prepared to remove Imma from the district was not so scary. Fighting an ARD committee is. If you ever find yourself in a situation where you need to fight the ARD committee, be sure to check into your rights ahead of time. It's basically a ten day waiting period and then a reconvening to see if anyone has budged. They can get very ugly. The state can be called in. We would have gone there if we would have had to, but we didn't. Before I agreed to the ARD's recommendation, I spoke to my new principal, and the head of special education in my new district and confirmed that nothing I agreed to would matter if the classroom they were recommending didn't exit in the new district. Be advised, however, if there had been an autism unit in my new district and I would have agreed to the old district's recommendation, Imma would have had to be in the autism unit in the new district for 30 days until the ARD could change the ruling. Something to keep in mind.

Imma's first day of kindergarten

 But we have no autism unit so Imma was placed in a co-teach classroom. She is in regular kindergarten with a special education teacher who comes in for a few hours a day to help support all of the special education students in that classroom. Imma also receives 20 minutes of resource. This is where the special education teacher takes Imma and another special education student out of the classroom and works with them in a small group to make sure they understand everything taught in class. When Imma misses things, it is due to her inability to process language, not a learning disability. This twenty minutes was actually a change from the original recommendation, which was 40 minutes. The new ARD committee felt Imma would benefit from more time in the regular kindergarten classroom and cut her time in half. Yes, the ARD committee wanted Imma in kindergarten more. Essentially, the new district switched the times from the old district. We went from 20 minutes per day in kindergarten at the old distirct to only 20 minutes a day out of kindergarten, plus speech sessions two or three times a week for about 20 minutes. So how is Imma doing in kindergarten, the place I was told she would never, ever be able to handle it and would be completely unsuccessful? She is thriving! Her language is taking off. Her speech teachers are incredible. We had some behavior scares earlier in the year but we also have a behavior specialist on her team that visits her every week and a school psychologist who checks on her. Her behavior is better than I would have ever hoped. She isn't perfect but she isn't hurting other children and it's been determined by her team of experts that most of the acting out is due to sensory issues. There seems to be a lot of evidence pointing toward a sensory integration disorder, not autism. In fact, some of the most experienced members of Imma's team have given my information to show why it is most likely a sensory processing disorder and ways we can help her. They don't think she was, is, or ever will be autistic. I also must say that Imma's kindergarten teacher is outstanding. She has figured out a way to communicate with Imma and to get her to comply like no one I've ever seen. She loves her special ed teacher, too. She's just in incredible hands. Nine people, yes nine, work with her to make sure she has everything that she needs, led by an extremely caring principal and head of special education who treat her as if she were their own and don't mind too much when busy-body mommy can't seem to cut the apron strings.

Imma at school

Let's talk about autism again, because I think it's important that I am clear about something important. The district Imma was in before explained to me that she was not autistic but that she would be labeled as Early Childhood Non-Categorized Autism and that she would qualify for services because of this label. Remember, I am an educator who works with students with learning disabilities everyday. To me, this sounded very much like they were saying Imma qualified for special education services due to this ECNC label. It was only after I left the district that I found out that is not the case. There is not a qualification for special education called ECNC. You are either labeled as autistic or not. Imma was not. Imma qualified for special education as a speech only student. In education, we basically look at special education students in two heavily populated categories, (and some other categories with less students, such as autism) those who are "speech only" and those who have learning disabilities. "Speech only" students still fall under the special education umbrella but their disability could be something as simple as stuttering or lack of articulation. Imma's speech qualification is more complicated because it is language processing but she still fits into the speech only category. She can get the necessary services she needs because of her inability to process language but she is not learning disabled or autistic. If the school district is suggesting your child be tested, make sure you ask specific questions about the areas where it is suspected that your child may need additional support. And make sure that whatever the school district tells you is an area of qualification is, in fact, a legal qualifying disability. You can find more information about these qualifications on your state's education agency website. I was pretty shocked when I found out that Imma could be placed in an autism unit based on a special education qualification of speech only. I have no idea why anyone would want to put a child capable of so much in such a restrictive environment. In fact, the criteria special education teams are supposed to consider first is called, "least restrictive environment." If you are ever in a situation where a school district wants your child in a restricted environment, ask what options are available that are "less restrictive." I can't promise they won't get ticked off that you know that phrase, but it will let them know you mean business and you know your rights. I certainly used that phrase several times and had the "autism schedule" I mentioned earlier thrown in my face. Under the circumstances, all I can honestly say is that district should be very happy I am not a litigious individual.

 Imma is doing so well in kindergarten. Teachers come up to me all the time and tell me how amazed they are at the progress she has made. I am, too. We have our struggles but she is beginning to answer questions, tell stories, talk about her friends and what she did that day. Her speech is becoming more clear, though she is still confused about the trickier parts of speech, pronouns and what-not. She is a different child. I know she is going to make it, eventually, she will get caught up. I don't know if she'll ever be "normal" but in a lot of ways, I'm not normal either and that's okay. I want her to be able to communicate, express herself, be successful, know the joy of friendship, love, have her own children someday in 30 or 35 years. And I believe she will. I truly do. Children rise to the expectations we set for them. Luckily, the staff of her new school has the same expectations for her that I do, they are the same as any other child in kindergarten. I shutter to think of what might have happened if I didn't stand up for her the way that I did. She may have qualified the next time she was tested for autism, which was originally set to be April 2013. When I asked the diagnostician at Imma's new school if she was going to be tested for autism in April, she said, "Why would we do that? There's no evidence to support a need to test for autism." Ahhh, the words I've longed to hear for so many years.

Imma even does some modeling now for my boutique. 

This journey is not over, of course. Imma will continue to learn new things, say silly things I think you might like to hear. I'm sure we'll have more bridges to cross, especially as we begin to explore Sensory Integration Disorder. I hope you will continue to follow our journey. I've been so amazed at the amount of readers we've had. So many kind messages and comments. I so appreciate your love and support.

 Just two more things I want to say on this topic, for now. First and foremost, be the advocate for your child when s/he needs one. If you don't, who will? If it doesn't seem right, keep asking questions until it does. If you don't feel like something needs to be done, don't do it, not right now anyway, keep looking. At the same token, you must keep pressing forward. Whatever it is that is making you wonder if something is wrong with your child will not just go away one day. You're going to have to work to make it go away. And it's hard work. But you can do it! And I'll be here to love and support you, as will hundreds more parents who have come before you. Just reach out to us and let us know you need help and we'll do everything we can.
 The other thing I must mention, which is not pleasant but has to be said is, let yourself grieve! It's okay to be upset and angry and frustrated and mad as Hell. You didn't ask for a differently-abled child, none of us did. There will be times when the only way to move forward is through the tears and the internal screaming. It's okay. I read somewhere once when I was feeling like the worst mother in the world, feeling like I shouldn't be feeling sorry for myself, that I actually DID need to feel sorry for myself. You must literally go through grieving process as if you have lost your child to get through this and move on. At first it may seem disrespectful to parents who have physically lost a child, and I understand that and apologize for it if anyone is offended. But what I had to realize, and what you will hopefully come to realize is, you did lose a child in a sense. You lost the idea of your child. The one I had imagined, that chatty-Cathy Imma, precocious, and ever the social butterfly, she was gone. She would never exist, not as a small child anyway. I had to cry for that little girl. I had to mourn her loss so that I could move on and accept the child I do have. Unlike a parent who has lost a physical child, I am so blessed that my baby is physically just fine and that I can move forward with her and continue to make progress. But until I let that other child go, I was unable to see that my child really needed help. At that point, when I had done all of my crying for pretend-Imma, I could learn to help the real Imma.
 Now that isn't to say I think I'm done crying over Imma. I still get upset when I feel like she doesn't understand or obey the way I feel she ought to or if I feel someone else is being unfair to her. When she acts out or hits me or her sister, I cry sometimes about that. But it's nothing like it used to be when I just could not understand what was wrong. We are past that now. We still don't have an official diagnosis beyond speech language disorder, but that's okay. I now believe that labeling Imma too soon would have been catastrophic and I am a proponent of waiting to label children, particularly in an educational setting, until results are absolutely confirmed and necessary for a child's programming.

This has been a lengthy post and a lengthy series. Thank you for following our story and please continue along with us as we continue to find the ever-elusive land of "Normal."

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.”