The Transition to Public Special Education

Tate is having wonderful experiences at school. He likes school and that is so important. But that has not always been the case. Once upon a time, he cried almost every morning before school. School was very stressful for him. He had a lot of needs that were not being met. He could not communicate his needs. Anxiety ruled him. It was hard on him and it was hard on our whole family. Because when Tate is unhappy, we are all unhappy.

When Tate began kindergarten he had come straight out of early intervention. He began Applied Behavior Analysis (ABA therapy) before his third birthday and we aimed for forty hours a week of discrete trial. Incidental teaching was used throughout every waking minute, trying to turn his whole day into one learning experience after another. We were trying to “catch him up” to his peers and get him kindergarten ready. We did the ABA with experts in the field of autism and the price tag was huge.

I knew there might be some issues with the public school immediately. One reason being-- I had called the public school and inquired about their preschool program. I also asked about the district’s ability to provide Tate with some services for our in-home ABA therapy program. The voice on the other end of the phone told me if I had determined ABA therapy was best, I had been reading all the wrong books. I knew ABA therapy was the ONLY research-based therapy at the time. So my first impression of the special education director and the program was not good. I did not contact the school district again regarding Tate’s education until he was ready to start kindergarten. We had an IEP meeting so Tate would begin school with paraprofessional support. It was evident from our first meetings the special education providers and I were not going to agree on what an appropriate education for Tate would look like. It did not get better for a long time. I had set my expectations high and I was sorely disappointed. I was also shocked. Tate has five older siblings and I had NEVER had any complaints in the past about our children’s education. I had a lot to learn about the difference between general education and special education.

Tate at his early intervention program

I had a lot to learn about the difference between private early intervention and the public school’s special education program too. There were few similarities. When I had questions about autism or challenging behaviors while Tate was in early intervention the staff had answers. Those first few years of public education I saw little evidence the ones providing Tate’s services understood autism.

We had some unforgettable experiences those first few years of public education. When Tate was six, one day he used his pencil to pretend. He pointed it at his paraprofessional and said “pow pow.” The para mentioned this to her supervisor. That teacher took Tate to the principal’s office. She asked if the incident should be reported to the police as the school had a zero tolerance for threats. Tate was six. He has autism. He was holding a pencil. And he was made to feel like he had done something bad. In his early intervention program it would have been celebrated. Pretending! Object Substitution while pretending! This was huge! The autism expert from Tate’s early intervention program would have written me a note or called me to tell me the great news. In the public school setting he was taken to the principal. Luckily the principal was a very reasonable man. When he told me about the incident he was smiling and assured me he never even considered making that call to the police.

Tate at Kindergarten

One phrase I heard often when I made a request for a service was, “We’ve never done that before.” Social skills coaching on the playground was one of those things they’d never done before. The argument against it was that Tate needed free time on the playground to do whatever he wanted. He would have paced and stimmed. I did not want those precious teaching opportunities wasted. The consultant / advocate I brought with me to our meetings argued for the coaching. In an effort to convince me Tate did not need coaching on the playground, the school district brought in their own autism consultant. The plan was for her to observe Tate for a few hours and then give some recommendations. (My own consultant had worked with Tate for years and knew him well but they wanted someone to observe him for a few hours and make recommendations.) I asked if I could be present to hear the consultant give her recommendations when she was through with her observations. Even that was a point of contention, as some did not seem to want me present. Thankfully, the principal called me and told me when the meeting was about to convene and I lived one mile from the school so I was able to get there and hear firsthand what was said. I will never forget what I heard or the looks on faces that day. That consultant agreed Tate needed playground coaching. AND she recommended even MORE social skills coaching than I had asked for be incorporated into his school day. I smiled all the way home that day. The suggestions made by the district’s consultant were not implemented in full but I am quite certain they would have gone with her advice had she said Tate needed LESS services. No one argued with me about the playground coaching much after that. For every battle I won though, I lost two.

We fought many other battles as well. I asked for Tate to receive a warning before he was to have a substitute teacher. I understood it would not always be possible and I know sometimes people become ill right before school begins. However, if a teacher had scheduled an absence and I could give Tate a warning before he walked into a room with a stranger in charge, it made a world of difference to us at home. Tate’s anxiety level after having a substitute was often high. I asked. I begged. I demanded. This became a real problem and no matter how many times I explained the need it did not seem to matter. General education teachers would willingly tell me when they were going to be absent. But the special education staff rarely seemed to be able to get me that information. The time that mattered the most was once when Tate had a gift to give a special education teacher before the holiday break. He took it to school two days before the break only to find a substitute. The secretary told me the teacher had scheduled time to be off long before that date. He was so hurt. If the goal was to show me who was “in control” then I was shown. Often. There was nothing I could do. I saw over and over that one person could ruin Tate’s day and ruin our evening. One person.

Para professionals and I often had to communicate in secret if we had information we wanted to exchange because I was not allowed to talk to my child’s paraprofessional without their supervisor present. I know what you are thinking. It was a ridiculous rule. It was a hindrance to everyone involved, especially my kids. I was told I could not even say, “There is a Chapstick in Tate’s pocket” to the paraprofessional. The special education director could not be moved no matter how many times I appealed to her. Despite the rule, the paras and I found ways to communicate when it was in Tate’s best interest. On two separate occasions I received phone calls at home in the evening from two different substitute teachers I’d never met. Both had been subs for Tate’s para. Both wanted to tell me something that had gone on at school they felt I should know about. Both had been told they were not to talk to me. They did anyway. Not that I was able to do anything about the problems they discussed with me though.

I came away from that first experience with my district’s special education department disheartened. It has taken me years to recover and be able to fully trust my children’s IEP teams. We have wonderful teams now and are very satisfied. The differences are amazing. My faith has truly been restored.

I learned some really valuable lessons and made some valuable observations those first years.

1.     One person can make or break a child’s education. One person.

2.   When your special needs child is miserable at school, the whole family is affected.

3.   The words “Promote independence” are spoken with a smile by educators, but those words are code for “reduce services” and a parent should not be fooled. Of course everyone’s goal is for a student to become independent, parents included. But not prematurely and not to save the district money.

4.   If the school wants to amend the IEP to “promote independence” and promises the services being reduced “can always be added back in later,” it will take an act of Congress to get those services back. Parents should not allow themselves to be coerced or pressured into signing anything amending their child’s IEP to reduce services.

5.   The law says a child’s needs must be met. So, in theory if there are ten children who need XX for one hour a day and only one person who can deliver XX, working eight hours each day, the district is obligated by law to hire another XX provider. In reality what I believe happens is the children who needs the XX the most get the XX and the children who need XX the least do not get it, OR the eight hours is split between the ten children. But an additional provider of XX is probably not going to be hired. The law is often ignored but dollars carry a lot of weight.

6.   Privacy policies can be a real detriment to a child’s education and safety. Privacy policies keep substitute teachers and many others from knowing about a child’s disability, needs, behaviors, treatments…

7.   Not every educator is good at his / her job.

8.   Tenure protects bad teachers.

Three Steps Forward and Two Steps Back

Three steps forward and two steps back: My life is a version of hhe bunny-hop.  We make a little progress and then have a set-back.

This week has been a hard one. I’m not good at tough-love, especially with my two youngest. It has always been hard for me not to spoil my kids and sometimes I have had to undo damage that I have inflicted, but it seems doubly hard for me not to give the two youngest what they want. What they want is not always what they need though and that is where the tough-love comes in. Tate and Sydney have to do without so much in their world that I cannot always give them: regular friendships, the ability to understand social relationships, a grade-level understanding of academics, age appropriate motor skills, the ability to communicate what they are thinking or feeling, and much more. So, when there are things that I CAN give them, things they want, I tend to bend over backward to make those things happen. Saying “no” to them is hard for me. 

It has been a long time since I’ve left Tate at school crying. He used to cry almost every morning before school but that was before we had the kind of IEP team we have now. I had forgotten how hard it is to walk away from the young man that has custody of my heart when he was sobbing. This morning I left him, wiping tears, with his shoulders shaking.  I told myself it was no big deal. I had a talk with myself about toughening up and the “big picture.” I got a block from school and burst into my own tears. I wanted to turn around, run back into the building, tell him that everything that led up to the tears was a mistake, and we could let him have it all his way. But his way, is not the best way and his way will just handicap him further. 

There is a behavior stereotypic of autism called echolalia. It just means echoing or parroting words or phrases. Tate used to echo movie phrases or book passages a lot. He also used to echo the last word of every sentence he spoke. He often did that in a whisper. It was pretty creepy sometimes and it was one of the first behaviors we eliminated when he was diagnosed with autism. I worked hard to rid us of that behavior by constantly telling him not to repeat, or “No whispering.” If I had a dollar for every time I said, “No whispering” I could probably buy a new car. I always said it with a smile on my face because I never wanted Tate to think he was in trouble or doing something naughty. A child with autism cannot help the fact that they have stereotypic behaviors (stims.) A stim often looks like a behavior you would see with Obsessive Compulsive Disorder. Stims can be redirected and eliminated sometimes but are often replaced with other behaviors that are even worse than the original behavior. We try to eliminate the worst stims we see and live with the milder ones.   

Occasionally when Tate is stressed he can still be heard whispering the last word or sometimes the last sentence he spoke but he doesn’t do it often. We don’t hear the movie dialogue like we used to either, but he has taken it to another level. He tells bits from sitcom stories as if they really happened to him. This is where our problem today began. Tate’s favorite shows are shows on the Disney channel: “Sam and Kat,” “Jessie,” “i-Carly” and “Good Luck Charlie.” Tate has taken scenes or jokes from the shows and built stories around them to tell to anyone that will listen. His latest story is that he will start a babysitting service in his apartment building (we actually live in a house) and he will “change them, feed them, burp them” as well as have a website for Tate’s babysitting service dot com. I have heard this over and over for days. Before that, he was going to be in a play on the high school stage and he was inviting people to it. I actually had people stopping me and asking what Tate’s play was going to be about. He loved the attention. It didn’t matter to him that it was all fantasy and he couldn’t really “deliver” a play.

This is a fairly new thing. Three steps forward:  Tate is seeking attention from others. Tate is communicating. Tate is pretending. All these things are things we WANT to see when a kid has autism. 

I didn’t know what to do about this new behavior. At first I listened and gave him an audience. I tried to help him with writing a script for his play. He was not interested, nor does he really have the ability to plan or write a play, even with help. So then I tried talking to Tate about it, explaining that he was pretending and he couldn’t continue to talk to people about all the pretend things. I told him it was not appropriate and it was confusing to people. He did seem to make an effort to hide it from me and only talk to people about his fantasies when I was not standing right beside him. So then I tried asking him nicely to stop. It stopped at home but not at school or in the community. 

Two steps back:  The fantasy talk has become a real problem. He is interrupting teachers, dominating conversations with peers, and causing awkward moments because people do not know how to respond. Soon, I fear he will be alienating people from his world who used to enjoy his company.  

So, what’s a mom to do? Tell the dad to take care of the problem, of course! Shawn is a very involved dad. Tate recognizes that Mom is a softer place to fall than Dad and Dad is the authority figure in our home. Dad had not yet addressed the “problem” although he knew it was becoming an issue. Last evening Dad initiated the tough-love I asked him to. He had a serious talk with Tate. Shawn did not frown, did not raise his voice, and did not try to intimidate Tate in anyway, but the message was clear:  the pretend babysitting service and all the other fantasies have to stop. There will be no more conversations based on those things. This morning I reminded Tate that he could start conversations with his friends and teachers about a lot of things. He could talk about his pets, his Halloween costume, or even a show he liked to watch, but he was not to talk about having a babysitting service or anything else that was not true. He seemed okay. He stimmed a little, but not a lot. We walked into the school, I greeted his Para and Tate choked. Then he began to sob.  He rarely cries. Seriously, I think he has gone a whole year before without crying. In Tate’s world, crying is big. In Tate’s world, crying is huge. Oh how I wish he was still two years old and I could make everything better. When Tate was two I still didn’t know what autism was. I still didn’t know our world would be turned upside down by a disorder I didn’t recognize. In my mind I still had six “normal” kids. Until you hear the words, “Your little boy has autism” I’m not sure you could understand how badly I would like to turn back the clock. Ignorance was bliss.

I’ve read a lot of books about autism. A. Lot. Of. Books. Some of the most helpful books I have read, were written by adults with autism. Temple Grandin is a favorite author of mine, and Sean Barron is another. Sean tells of being a young man and being very interested in television. He also was interested in having friends but had no idea how to make a friend or how to communicate. He didn’t know what was socially acceptable and what was not. He knew that the cartoons and sitcoms he watched got a lot of laughs from people so he began to memorize lines from the shows and he would deliver them to his school mates. Because the scripted lines were not set up properly and were out of context, Sean would get no laughter. He couldn’t figure out why and it left him angry and confused. I often think about this when Tate is trying to tell a joke he heard on television or is quoting movie lines. Is it the same for him? Is it different? Will he ever be able to tell me? 

We move forward in other ways, only to fall back. For years I have tried to interest Tate in participating during worship services. He has been singing for years but zones out for the rest of the service. I have tried to get him to hold a songbook while he sings but he has complained that it was too heavy and he couldn’t look up the numbers because it was too hard. I have made some huge headway with him lately. Three steps forward:  Tate has learned to follow along and keep his place while we sing hymns. He understands how the stanzas work and the chorus repeats. Most recently, he began looking up the numbers by himself, rarely needing help to find a hymn!  He has even begun to pick up his book without me reminding him. Two steps back: Holding that “heavy” hymnbook has brought back a stim that we broke him of many, many years ago: fanning the corners of a book. I’m not talking about fanning the corners for a second and putting the book away. I’m talking about becoming LOST in the movement of the pages as they fan across his thumb. His whole focus is absorbed into the corners of that book and it could keep his attention for twenty minutes easily. No big deal if he only does it during worship? No! It has the potential to consume him at home and with every book he can get his hands on. So, after we sing, I take the book, put it back in the rack and tell him he is not allowed to touch it again until it is time to sing. What’s the big deal? Do you know how many books there are in this world I will have to keep an eye on now? Ha! Honestly, I feel like I can hear the music playing now. The tune is “The Bunny Hop.”   
There is a follow up to this story here: Part Two 

An Easter joke

Tate’s literal thinking keeps him from getting the punch line of most jokes. Many of the funny things Tate says, he has learned from a television show or movie.  He has the ability to often use those phrases in an appropriate situation and get a laugh.  We can often identify the television character or show where the joke originated.  This week Tate keeps telling a joke that he modified from a “Sponge Bob” Xmas show.  He modified it to fit Easter, which is tomorrow.  It goes like this: “I cannot believe that anyone would celebrate a holiday where a bunny breaks into your house and leaves gifts in a basket!”  It is cute.  He does understand the joke.  He did generalize it and make it fit the occasion.  However, it is not his own original thought.  He isn’t there yet.  After Tate’s autism diagnosis, at age two and a half, we began early intervention.  We taught him to pretend, but he could then only pretend the things he had been shown.  He could not come up with anything on his own.  However, he does come up with his own sequence of events and original ideas now when pretending. 

Tate is very visual as most people with autism are and cartoons are what he laughs at the most.  Tate LOVES the movie theater and we have spent a lot of time there lately.  We have seen “The Muppet Movie,” “The Big Miracle,” “The Secret World of Arriety,” “Journey to the Mysterious Island,” and “The Lorrax.” When a preferred movie is coming to the big screen or is going to be released on dvd, he knows the date and plans an outing to go to the theater or purchase the dvd.  He can be very persuasive too.  Because he is interested in so few things and asks for almost nothing, I try to accommodate his desires in this area.  I can say “no” when I need to though.  If we see a movie at the theater and I was not happy with the language or storyline then I let him know we will not be purchasing the dvd.  A couple of conversations about it will usually convince him that I am not going to change my mind and he accepts it.    

We have seen the previews to a new release called “Pirates: Band of Misfits” that we are looking forward to.  We have also seen previews for “The Three Stooges” and I am a bit worried about that one but he sure wants to see it.  I try to steer my kids clear of the movies and shows that are crude or crass.  I especially hate bathroom humor.  I told Tate that I would NOT be taking him to see a movie about the stooges so he has asked Dad to take him.  Shawn likes the stooges.  The preview we saw showed the classic move that is used by the stooges where one of them pokes someone in the eyes with two fingers. Tate doubles up laughing, as most boys his age would.  I guess that is a good thing?  I am aiming for “age appropriate behavior.”