Glitter and Tulle Boutique Post-Christmas Sale

I am not a proponent of shameless plugs but one of the ways I make sure Imma has everything she needs is by running an online boutique, that became a few online boutiques recently.  If you are looking for some cute little girl or home decor items, please visit my Glitter and Tulle Boutique pages.  You can get free shipping on Art Fire through 12/28 with code CHRISTMAS2012

http://www.artfire.com/ext/shop/studio/glitterandtulleboutique

Or save 10% on bonanza with the same code CHRISTMAS2012

http://www.bonanza.com/booths/glittertulle

This concludes our commercial interruption.  Seriously, I appreciate all of your loyal support and if you live outside of the US and would like the best price possible on shipping, message me.  Likewise, if you following this blog, "officially" or not, send me an email or a message and let me know and I will definitely give you the best price I can on any item in my shop.  It means a lot to me that so many people are following Imma's story and I would like to have the opportunity to show you that appreciation.

Christmas Challenges with a Special Needs Kiddo

1) Santa is scary!  Imma was terrified the day he came to visit the kids at school.  Can you say an hour with her hands over her ears and her eyes shut?  Not kidding, an hour!  Thank God for her wonderful sped teacher who helped her get through it!
2) Snowmen can be scary!  The animatronic kind anyway. We have one and Imma used to love it but this year whenever anyone would say the word, "snowman'" she would literally freak-out! "I don't want a snowman!  No snowman!"
3) If you dare to put presents under the tree, expect to have presents unwrapped early.  And daily.  (So we don't do that any more!)
4) It's kinda creepy when you tell your very literal special needs child a man is going to be sneaking into our house tonight through the chimney.  So go to sleep. Oh, and let's leave him a snack.
5) Explaining why no one else gets to go up or down the chimney, no matter how good of a climber you happen to be.
6) If it is snowing and icy, expect the new bike to be ridden around the living room. And for any furniture that dares get in the way to be severally chastised.  "No, chair!  Don't do that!"
7) Trains are cool to ride but expensive.  Pre-shows to trains are loud and scary.  If you must sit through said pre-show, bring some headphones or a smartphone.  Make sure you give fair warning when train ride is almost over.
8) If Baby Jesus wants a cake, be prepared to share with Imma!  And when we sing happy birthday, it better be to her!
9) Church is fine if it's not too loud.  (In the past when it has been too loud, Daddy has spent the entire service sitting in the lobby, trying to keep Imma out of the sanctuary.)  Be prepared for statements such as, "I don't really like this book," because the Bible has no pictures.
10)  Finally, it is difficult to explain that no we can't do this again tomorrow and yes we do have to wait an entire year.
We had a wonderful Christmas and we are blessed to have two beautiful little girls to share it with.  Merry Christmas from the Van Horns!

Christmas 2012 in pictures

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.”

The Journey to “Normal,” Part 4: PPCD (Pre-school Program for Children with Disabilities)

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.

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.