Learn Your Special Education Laws, Special Education Rights, and Share IEP Goal Ideas

Dec 04
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by Jess

This is the final in a series of posts by Lori Gertz about the process of becoming an advocate for her growing special needs child. Click here to read the first part of the series, click here to read the second part.

First grade started before the summer had a chance to end. The third week of August had me lugging all three kids into Emily’s orientation day with school supplies. The other schools, private in nature, weren’t starting for a few more weeks. Emily’s first grade teacher, as it turned out, was the first cousin of a dear friend of mine and so I met her socially prior to the transition IEP meeting at the end of Emily’s kindergarten year. When I placed her at the IEP meeting, I was a bit taken aback. I had actually poured my heart out to her about Emily on a 1:1 parent to parent basis, I felt like she had seen me undressed.

She was a true professional, and although she had a look of apology (for seeing me “undressed”) she had an obvious self confidence about her ability to handle Emily in a classroom and she was ready for the challenge. She was a wonderful and dedicated teacher of 20+ years who was approaching Emily’s first grade year as her final year before retirement. The first day of school had her a bit tenuous as it was her first real opportunity to meet Emily, who she had been prepared for greatly by the IEP/BIP (Behavioral Intervention Plan) the team had written for her.

For me, watching the plan Emily’s IEP team had written be put into action was pretty amazing.

She started the year with some social work consults, an aide in the classroom, a Behavioral Intervention Plan, and a documentation program where I would get reporting on her behavior throughout the day, everyday in 30 minute increments. It was a full, professionally written and well documented IEP. The kind both attorneys had told me that we were a long haul from getting without a lot of 3rd party assessments and evaluations. I had hope, for the first time in a long time that management at this level would give Emily a chance to have a “just and appropriate” education in a public setting 5 minutes from our house vs. in a private setting elsewhere.

Behavioral Intervention techniques in the new IEP involved typical redirection, taking breaks outside the classroom, using a seat out the classroom, and using other classrooms but in short time it was obvious that a calming room that was sound proof would be necessary.

It wasn’t long into the first week of school before it became obvious that the honeymoon period Emily had in her Kindergarten room was not going to be replicated in 1st Grade. Emily was not interested in taking on much in the way of educational challenge, and being told what to do and when to do it wasn’t in keeping with her ability to regulate herself.

The 3rd day of school resulted in my first “incident report of physical management”. It resulted from an incident that actually hadn’t taken place in school, but on the way to school on the bus. The outcome of this particular incident was a transitioning plan in which the classroom aide would meet Emily at the school bus door and walk her into a separate transition room where she would settle into the first 15-20 minutes of the day and into her morning work before being brought to her classroom.

Incident reports were required by law to be delivered both verbally and in writing by the end of the day that the incident of needing to restrain her physically occurred. By the beginning of the 2nd week of school, I had already received 4 of these incident reports and was beginning to dread the regular 3:00 pm phone calls from the Principal.

Restraint is a tactic used in schools ONLY in instances where the child is attempting to or successfully putting either themselves or someone else in danger. There are multiple style holds that the team practiced and only when more than two or three team members were present. They are the basket hold, the standing hold, The Standing hold with limited movement, and Team control which resembles that which you see on police shows where the person is lying face down on the floor with staff holding arms, legs, and head.

Emily gets pretty self destructive when she is dysregulated. She hits herself, bites herself, slams her head on the floor and scratches at her skin until she bleeds. She will often scream and yell what the school defined as “concerning statements” like, “I want to die and I hate myself!” Triggers for which might be as small as the teachers trying to redirect her during a moment of overwhelm, or to talk to her about a particular instance where someone didn’t want to play a game with her or talk to her on the playground.

Emily’s Modus Operendi over the 8 weeks she was at the public school became running! Physicians call this elopement. If she was overwhelmed, or angry, or frightened, she would just run. She ran for the doors of the school that sat on a busy road and the team realized they needed more in place than a few areas in the hallway for her to calm down. This is when they instituted the “calming room” that was as far from any school exit as they could arrange.

When she did still attempt to “run”, they restrained her, which was like throwing gasoline on a fire. Restraint to a child in a fright or flight state, while necessary to maintain a level of safety, is both dangerous to the adult implementing it and not terribly successful at calming the child down. Emily often bit, hit, kicked and multiple times attempted to throw up on all the team members, including the school Principal.

I knew that I shouldn’t have felt embarrassed, but I did. This was a great team trying everything they could to manage this child while giving her a “fair and appropriate” education and I wanted them to know how much I appreciated all of their efforts so deeply. I also wanted it to be clear that I didn’t just brush off the responsibility every day after putting her on the bus. I carried the heaviness of the possibility of what the day might bring every day as I watched the tail lights of the bus disappear down the street near our home and every hour thereafter until either the phone rang or the daily documentation was emailed.

At the same time as being grateful for their efforts, the calls from them and the daily documentation left me sickened and often at the same time I felt angry that this was the only way that she was going to get her special needs met.

By allowing this to continue and not pulling her out and finding an alternative setting for her, she was doing what the attorneys and professionals had labeled “failing upwards” and as her loving parent it just felt like bad, bad medicine. That said, there was nothing I could do but sit by while it happened. She would be her own best advocate in demanding what SHE needed, not what WE or THEY felt she needed.

The IEP by this time was reflective of some much more tangible instructional and educational goals and objectives, and of course, because so much of the day was being spent managing her behavioral difficulties, the instructional goals and objectives started sliding in a downward motion.

By the 3rd week we had already reconvened with the Team to add additional objectives and goals and re-set the expectations for her success. They suggested we take the educational goals to a 60% expectation level allowing for them to reward her at the lower levels so that she could build up some self confidence. This worked for a short period of time, about 2 weeks, until the reward program became a trigger for additional emotional and behavioral instability.

When the educational and instructional goals began slipping, Special Education hours and pull-outs were added enabling smaller class settings to be implemented for math and reading. The specials like music and art were still with her classmates, but by week 6, more than 40% of her classroom time was outside the regular setting including the transitional morning time. Yet, this still didn’t incorporate the amount of time she still had time outs, breaks, and the eventual multiple trips to the nurse which she found to be an excellent way to enforce a break where her teacher would otherwise not be willing to give her one.

As in kindergarten, the stomach aches, the itching, the “feeling sick”, the bumping and bruising, biting and kicking oneself just to get to the nurse started up again somewhere around week 4. I’m certain that at some point, both the kindergarten level nurse and now the elementary school nurse must have thought I was the worst parent on the face of the earth.

The volcanic nature of Emily’s eruptions in school came to a head the 7th week of school as a result of little or no identifiable trigger, she refused to go along with the class to Music from Gym class. She fell to the floor a number of times as the classroom aid tried to walk with her which then dissolved into kicking, scratching, hitting the wall, and verbally complaining she was too tired to go to class. The aide was able to get her off the ground and walking, but then she took off and ran for the door. The aide caught her just outside the school and managed to carry her into the breezeway while she was still kicking and screaming. The aide saw the writing on the wall and with the use of a walkie talkie, requested a TEAM call. As the other teachers and school administrator arrived, Emily kicked one in the face, one in the mouth, and spit on the two others until she was put in a 4 person Team Control Hold.

With two teachers walking from this incident with injuries, liability to the school had to be in question. I have always wondered, to what extent are teachers responsible for managing a child over their own safety? The School Principal was involved in this team hold. You can’t tell me, she didn’t walk away with some bruises and a serious question as to how much the other team members could be expected to contend with going forward.

The day after this Team hold, while the Principal was off premise at a conference, Emily tantrummed, calmed, and then while all eyes were off of her, disappeared. Like that, the school was forced into a Lock Down, and faced with an Amber Alert after 10 minutes and no school administrator on premise, the decision was made. Emily was eventually found to have done the right thing and gone to the calming room, but she had closed the door and left the lights off as that was the way she found the room. I, of course, had no knowledge of the adventure of the day, until the phone rang at 3 pm. Emily had successfully failed upwards and in record time.

The Team members involved in the Lock Down called the Special Education Coordinator and then called me at 3 pm. An Emergency meeting was called for the next school day, and even before I had the incident report of physical management in my hands, our meeting for therapeutic outplacement had been had.

Present in the meeting was the Head of Outplacement for the Special Education Dept, and every member of the TEAM along with me and Craig. In under 5 minutes, nary a dry eye in the room, it was decided unanimously that Emily could not be managed in a public school setting. Just like that. No Attorneys of record, no huge retainer fees, no professional advocates, no psychologists, no psychiatrists, no physicians needed. No 12 inch pile of diagnosis documentation, no affidavits. Nothing. None of it was necessary. Emily had indeed performed as her own advocate, demanding exactly what she needed and thwarting every effort anyone made to support her without those needs being met.

That night, Craig and I had a quiet talk with Emily about her changing schools. It wasn’t until that night that we explained that we knew what had been going on at school the whole time, as during the entire 8 weeks, Emily came home chipper daily and when asked how school was, replied only cheerfully, “it was great mom. I love school!”. She was embarrassed when I asked her why she didn’t feel like she could tell me what was going on there. She lowered her eyes and told me she wanted to make me happy and didn’t want to disappoint me. My heart cracked and I was certain that it echoed in the room.

That night she went to bed hopeful. She was hopeful that her new school would be more in keeping with her needs. Would it? Could it? Could any school meet the needs of a smart but brain impaired child with mood disregulation?

The process of finding a therapeutic outplacement could have taken a long time, if not for the fact that we had already begun assessing schools earlier that year when we held less hope for the public school’s IEP. We suggested the therapeutic school the attorney had mentioned as an option and I had spoken to repeatedly about their philosophy, and after a phone call, it was decided that although the school didn’t have room for a matriculating student of Emily’s age right now, they would accept her into their 60 day diagnostic program. In the meanwhile, during the transition, Emily would go from receiving 40% special education, to receiving 100% special education- meaning she would really not be spending any time in her normal instructional environment. It was a holding pattern, so that she would be covered during school hours while the therapeutic setting was confirmed.

It was only a short time until all the paperwork was filed and only 3 school days until we would schedule and have a meeting with the administrators at the therapeutic school.

There was a moment in that meeting, I realized that although this had been our goal, that it also meant we were starting at square one again. While the therapists and teachers at this school would have access to all the documentation from the public school, the 50 page document from her 2 prior hospitalizations and about 8 inches of reports and assessments from third party professionals, they would be reassessing and reevaluating Emily with their own performance matrix. In one way, Emily was getting a second FIRST chance. For me, that meant living through the “failing upwards” process all over again, and as happy as I was to have the support, I dreaded the idea of starting all over again.

Advocate on Steroids -Therapeutic School Outplacement

Emily had been accepted into the diagnostic program as a feeder to the school’s entry. Ours was a situation quite unlike many, in that, when she was not dysregulated, she loved learning. In fact, this was what fueled the uncompromised dedication by her teachers on the TEAM at public school. When she was ON, she was ON!

The therapeutic school based its teaching foundation on a native American form of community driven cooperation. Reward systems were built in at multiple levels and so engrained in every activity at the school that even those kids like Emily who figured out the manipulations in reward programs like the one attempted at public school, couldn’t quite grasp this one. As such, the levels of rewards began to unfold for Emily in the very first days.

As soon as the teachers (the amazing teacher to student ratio in the classroom is 1:3, in the school it is 60 teachers for 90 students) got a handle on Emily’s interests, they started to use those as carrots for appropriate behavior. Everything from outside gym class, extra art time, shopping at the rewards store and getting special field trips were based on behavior that was tracked daily in a strategically intense matrix of performance measurements.

As with any situation, there was a learning curve as the teachers got to know her strengths and challenges, and as a result of some uneducated judgment calls, Emily suffered.

The first teacher’s mistake was offering to get something special for Emily that she could “purchase” at the rewards store at the end of her second week at school. Emily had been thrilled at this prospect and indeed was motivated to perform to her best behavioral ability to earn this reward. She was so excited about it, it was the first thing she talked about when waking up that morning and even told the cab driver about it when she got in the cab. As soon as she arrived at school she approached the teacher to remind her about her promise and to show her excitement that the day had indeed arrived. When the teacher explained that for some reason (unbeknownst to me even now) she was not able to follow through on the purchase and placement of the item in the “store” she explained to Emily that it would not be there on her reward-store day. Emily was visibly upset, but contained herself and said it was ok and that she would find another item to make her happy. Fast forward to 2 pm and the trip to the Reward-Store, Emily announced how excited she was because she would be getting the item that the teacher had promised her.

In our life, these moments happen often. I call them non-engaged and engaged moments. There is a characteristic of kids with FASD that calls for repetitive learning. It’s almost akin to the philosophy of how math is taught in cylinder-like circles of repeated learning to form a foundation for the ongoing skills. It involves layering new information on top of previously learned information by reviewing and adding facts on top of the facts a child knows. The brain damage caused by alcohol crossing the placenta in-utero leaves a brain neurologically damaged and therefore the synapses misfire. So, in plain English, what she learns and knows today may be there tomorrow and the next day, but in a moment, like a flash of lightening, it can be gone.

Emily was gravely disappointed by the time she realized the gravity of the excuse by the teacher with the broken promise, and she had a tantrum. Restraint was necessary and since it was towards the end of the day she actually attempted to jump out of her moving cab as they sent her home.

The school psychologist explained when she called me out of a business meeting that afternoon to come get her that, “she was not capable of coming home in the cab that day.” I had to excuse myself and drive a half hour to pick her up, but it was a good half hour because I had steam coming out of my ears. I felt like Emily had played them. If they felt uncomfortable putting her in a cab because she was unbuckling her seat belt and opening the door, they should have waited until she calmed down and then called another cab. But instead, their misfire was my responsibility. It wasn’t until I got to school that I put the pieces together and explained the reward-store tantrum. It was to no fault of Emily’s and sadly had me questioning, already and only in the 2nd week of school, their understanding of her complicated organic medical diagnosis.

The matter was handled delicately by the school administration and which resulted in that particular teaching becoming ultra sensitive to every item Emily chose at the reward-store. I could tell that they must have thought I was a crazy control freak. Shortly after this situation, I tried to explain that I wasn’t a control freak, I just lived in a world where I had to minimize the possibility of a tantrum around every corner. I called it, “defensive parenting”.

Another good example of the inability to process information mimics an eery scene from Michael Dorris’s, amazing novel about his FASD diagnosed son in The Broken Cord. Emily stepped off a curb on a family shopping excursion and walked directly towards a car accelerating right towards her. I grabbed her by the coat collar and picked her up nearly tearing the damn thing off her neck. I gripped her face with both hands and yelled, "Emily, what on earth were you thinking?" She looked at me for a moment blankly, then down at her new shoes, bottoms unscuffed as we had just bought them minutes before, then back at me with tears streaming down her cheeks. "I don't know. I just don't know what I was thinking." I sat on the curb and held her in my arms like a baby as she cried, shocked by the reality that my daughter who knows inherently to look both ways before crossing, had absolutely no access to that information in that moment.

The 4th week at the therapeutic school brought with it some positive behavior from Emily. As a result, she was rewarded with knitting instruction by another of the teachers in her classroom. This teacher spent a short time instructing her on how to knit, and then proceeded to give her two sharpened pencils to use as knitting needles and a bag of yarn to take with her in the cab to the after-school program she has been attending since preschool. Now this instruction to this particular child, comes as a result of seeing improved behavior in a child that regularly shows innate low frustration tolerance, perfection issues that drive self destructive behavior, and the inability to follow direction. So, in the cab when she “dropped a stitch” resulting in a “hole” she went off the deep end.

45 minutes after her arrival at her after-school program I received a frantic phone call from the Director begging me to come and get her. He had never seen her this way and he was unable to help her. She was hurting herself and others and had to be picked up as soon as I could come. I feared from the sound of his voice that I would be sitting in the psych ward intake office that night.

Emily had been lovingly cared for by the same local community based family center for 3+ years. They knew her and they loved her, for her strengths and her challenges. They had always gone above and beyond the call of duty for this child, often times enlisting additional support to watch and manage her on their premises. They had loved her through her rages under administrative desks throwing shoes, screaming self directed threats and frightening and sad words, and they had loved her in her hypomanic state of over-the-top excitement. They had medicated her like soldiers and held her like loving family in my absence. They had applied creams, bandaids, boo boo bunnies and face paint. They had facilitated karaoke, exciting day trips, and fun undernighters. They had held her in the best of times and the worst. I had only received a call asking me to come get her two other times in 3 years, and never a call this frantic. I made an illegal u-turn on the highway and doubled back to the center as fast as I could get there.

Triggered entirely by the frustration of the hole in her knitting, Emily lost it, biting both the Center Director and the After-School Program Director, and running through the center screaming in front of parents and other children in the program. She was suspended until we were able to either fund or get the school to fund an “aide” for her. The center could no longer manage her behavior without a transitional support person from the school.

With a historic difficulty for transition, it wasn’t like another program could have fit the bill for Emily. Even if another program would have been willing to welcome her, the history lost was the comfort lost for Emily, who was in need of not only a structured environment, but is a child who needs to be cared for by someone who can be her external brain when hers is disconnected, as an FAS brain is known to do. External brains aren't just new people with new energy, external brains are people with linked history to a child with Fetal Alcohol Spectrum Disorder and this would be like looking for a needle in a haystack.

My little girl knew not to bite, she knew it wasn’t ok to hit, and she knew to look both ways before stepping off a curb or crossing a street. But, as other parents of children with FASD know, our children know these things but often can’t process the situation. They just don’t “know” what they are thinking. If this is a disturbing thought for an outsider, imagine what it must feel like in a moment of lucidity for our children. Emily has more than one time told me, “Mama, I think I’m losing my mind.”

The trigger for the loss of her after-school comfort zone was the inability for yet another teacher at the therapeutic school to understand that her inabilities ran far deeper than a lack of cohesive understanding or instruction. She had never learned to knit, not due to an absence of her incessant and perseverant begging to learn. She had never learned to knit, because as a person practicing “defensive parenting”, I chose not to challenge her with an ultimately excessively frustrating task, with or without instruction. In my view, a child with a low frustration tolerance must learn to cope with “holes” before they can be left alone to attempt to create a masterpiece.

It was the 5th week of school that threw me into overdrive.

The reason the school we chose was one of our first choices was because we were already driving to this nearby town with Gabriel. He attended a private school there and it would be simple to both drop and pick them up at the same time everyday. However, the school said absolutely not. Parents were discouraged and in fact, not allowed to transport their kids to this school. Supported by the School District (who was picking up the tab), they insisted on sending her to and from her therapeutic school in a district funded public cab service. They paired the cabs with students returning to certain areas regardless of their age or issue. On a particular day, the week of Thanksgiving 2009, Emily was thoughtlessly paired with an older boy who told her he had a pretend “weenie” in his pants and she should touch it. So, she did the whole way home and then told me about it when she chatted up the day an hour or so later.

I think my tolerance for what I could handle as it related to the outside world and my small brain damaged child was met the evening I spent talking to a sheriff in my dining room about the sexually inappropriate experience that Emily had in the cab coming home from her therapeutic school. She was 6 years old.

I’m still without any insight as to how, whoever was in charge of pairing the kids that day, thought there was anything acceptable about pairing a 15 year old socially/emotionally challenged boy, quite possibly with a history of deviant or violent behavior that landed him at a therapeutic school to begin with, with my 6 year old daughter.

We had in 4 short weeks gone from our parenting honeymoon of feeling relieved that she had made it into a therapeutic setting, to being concerned that even in this setting, the FASD was being overlooked and she was being treated like any other student with a social/emotional behavioral component to a challenged education. In a matter of months we would move her to the private school in Washington. We were glad to say goodbye to a therapeutic school that kept consistently pointing fingers at us as the cause of Emily’s problems and turned down our repeated requests to transfer her into a 24 hour RTC after 11 weeks of psych ward hospitalizations and multiple suicide attempts.

The story never quite ends. We, now in conjunction with a guardian family, still advocate for Emily on a regular basis. I’m much more comfortable with telling it like it is and I have three filing drawers to support that information.

The role as advocate, no matter where a parent falls on the spectrum on need, is a responsibility that one grows into. Usually, as a result of being truly and undeniably flabbergasted by what can happen to a child that goes unprotected, even in the presence of professionals and controls.

I know of many parents who themselves are not proud, as am I, of many of the tactics we have had to resort to in meetings with bureaucratic paper pushers who are supposed to be working on our tax dollars to provide the best services and education for our children. We are a loud bunch, but we don’t give up, and our kids are better for it. And in the end, fighting for our children’s rights is our duty as their parents.

Author Bio: Lori Gertz makes her living as a strategic marketing consultant, writer, and reiki master and is currently studying to be a homeopath. She faced the ultimate Sophie’s choice—to give up the daughter she had adopted as a newborn or to keep her, even though she and her husband, Craig, could not ensure that their other
children would be emotionally and physically safe if their troubled sister remained in the family home. She is writing her book, Mama Can’t Kiss It Better: An Idealized Motherhood Lost.

She has created a resource for parents struggling with many of the same issues on

Facebook.com/lorigertzauthor

Twitter @lorigertzauthor

www.whenmamacantkissitbetter.blogspot.com

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