When you can't speak...You can't tell

I came across this article yesterday on Yahoo.  I'm sure many of you did, if you didn't, the link is below.  

http://www.hnva.net/teacherbully/#caught

I'm wondering how many people were shocked and appalled? It saddens me to say that I was not shocked by one thing that was brought forward by this article and Mr. Chaifetz's video.

I have my own stories about the education system and the treatment of my son. Not all of my son's experiences in the special education system were positive.  If they were he wouldn't be finishing out his high school years at home with me.  If I'd more clearly understood the process maybe I would have done things differently or him. I don't mean the IEP process. I mean the process at which IEP team members work together to point the finger at my child for his failure to progress with their assigned goals. I will say that I didn't feel  that educating my son was of interest to many of the educators who participated on his IEP team.  I can count on one hand the number of individuals who actually believed in my son's potential and wanted him to be his best.  He had been in the education system from the time he was four years old until he was placed at home for health reasons at the age of fifteen.  

When my son was seven, the district assigned him a new health aid.  They reassigned the the aid that was with him by saying she really wasn't qualified to meet his health needs.  She was attentive to detail and she cared about my son.  The new aid talked negatively in front of my son about me and his health needs.  She continually remarked to our part-time nurse, who went to school with him, that I was over-protective and she didn't need help transferring  him.  She was overly confident and disregarded many, if not all of my concerns, regarding the care she provided my son during his school day. My internal bells and whistles begin going off.  Between the nurse's reports and my gut feeling I was beginning to worry.  Yet, I didn't have enough sense to call an IEP.  I was stupid.  

Fast forward to a phone call I get from the aide.  She said something happened to F's leg while she was moving him.  She thinks his hip popped out of socket (since his hips are dislocated).  I immediately go to the school I transfer him out of his chair.  He's shrieking in agony and pain.  I discover his left thigh is so swollen.  I contact the doctor's office.  They send me with him immediately to the ER.  Upon evaluation we are told his femur is FRACTURED!.  He's in so much pain.  They medicate him and send him to x-ray.  What I see on that x-ray makes me sick to my stomach.  Not only is his femur fractured it's broken into two pieces sitting side by side.  It was like a horror movie x-ray to me. The doctor's cannot set his femur due to the cerebral palsy.  They give us scripts for pain meds.  Tell us to move him every hour .  They give us a foam pad and a strap to stabilize his leg to cut down on it's movement.  He's at risk for blood clots, pneumonia, and skin break down.  My heart is broken, so is my husband's.  We are FURIOUS!!!

To this day I often think about this injury and what that was like for him.  Unable to speak to get the aide's attention.  Although, I have my doubts that she would have noticed anything that he said if he could speak. When I do think of it I feel sick and emotional. F and I do not talk about this accident.  I can't even imagine what this nightmare must have been like. His communication skills are improved enough that we could likely isolate what occurred, but I don't. Some things are just better being left unknown. 

In a nutshell, we never find out what really happened to F's leg.  We suspect that when the aide had him in a stander she forgot to unstrap either his knee or ankle, possibly both, and moved him alone.  Pulling on him with such force to remove him from the equipment that she snapped the largest bone in his body.  My son suffered physically and emotionally from this experience.  He's unable to speak and he was terrified of new nurses of returning to school, of being transferred to and from equipment.  It felt like an eternity for him to recover emotionally enough to return to his full-inclusion class.  

The aide still has her job.  My son encountered this aide above five years later in a summer program.  He showed up at school, heard her voice and become emotionally hysterical.  His current aide at the time called me to tell me he was crying uncontrollable and she'd never seen him this way.  She couldn't calm him down.  I went to pick him up walked in the class saw the aide who broke his leg and knew what he was upset about.  I called the supervisor and you know what her attitude was?  It's been long enough it's time for us to get over it.  REALLY?  Your going to tell a child who was severely injured and traumatized that it's been long enough get over it?  

And yet I continued to send my son to school year after year... until I got smart. I look back now on my son's emotional state through his last years in a special day class for the severely disabled.  He was withdrawn, depressed, emotional.  I can't help but wonder what happened in that classroom.  I will never know.  It's taken a good two years of being at home working with individuals who treat him with love, respect and dignity, as all human beings should be treated, for him to return to us.  

Repetition and Data

I read something yesterday that reminded me of the wacky special education's way of torturing their hardest to serve students.  Repetition, I realize repetition is necessary.  I get that to teach children they must repeatedly do learning tasks until they have mastered it.  That's logical when your learning colors, ABC's, times tables, and various other learning concepts.  Okay, I'll agree to that.  What I don't agree with and what I believe is a form of torture, to these hardest to serve children. is making them repeat the same tasks over and over until the educator has been satisfied with "their" definition of assigned mastery.

For example, if you have a student who uses switches for access with their head like my son.  Lets say the switch is attached to a  lightbulb.  Please know this is an example, but I'll tell you that I'm sure they use something stupid in the lightbulb's place.  Let's make it interesting by making it a strand of colored lights.  So the teacher defines mastery as "student must hit switch 9 out of 10 times for x amount of time to activate pretty strand of colored lights."  Data will be collected on one of the teacher's cute little data sheets.  Let's say disabled student number one used the switch 3 times in a row and got the "wow" feeling by activating the colored lights 3 times.  Then said disabled student, who can't communicate, but is smart enough to realize that colored lights are pretty the first three times and then really stupid and boring after that.

This student can't say "hey this is stupid, give me something more interesting." Does the teacher ever think of that task as boring and dull... probably not, but the student doesn't ever show mastery because the student didn't complete the task 9 out of 10 times.  Day after day, this student has the switch hooked up and the lights plugged in and maybe on day 5 the student hits the switch 1 out of 10 trials, another day 0, or another day twice, because the task is boring and dull, but they keep putting the student in front of this task expecting him to "master" the task to show that this student understands switch access.  This is called repetition to mastery or whatever stupid term some lame educator came up with to label it.

With typical toddlers and preschoolers who are learning their colors we show them red.  They say "red" we move on to the next color.  We don't hold up red,  get out a tally sheet and make them tell us it's red 9 out of 10 times in a row.  You'd mix it up a bit to keep it interesting.  If you didn't would they continue to tell us it's red or would they be smart enough to think "if they keep asking me if this is red, maybe it's not really red? Do they want me to tell them a different color?" Or do they throw a tantrum and refuse to cooperate, because they are becoming frustrated and don't understand why you keep having them do the same thing over and over and over?  If you wouldn't treat a normal functioning child this way, why in the world would you treat a severely disabled child this way?

This was how my son was expected to learn by repeating these same demeaning tasks over and over and over.  No wonder he checked out the only way he could by falling asleep.  No one ever explained to him the purpose of these tasks.  If you do this it leads to this a communication device, the ability to say yes, an hour out of this classroom, etc. The educators instead labeled him as "unmotivated and unteachable." How fair is that?  No one asked him what he thought was motivating and interesting.  No one asked him if he thought this was boring.  No one ever gave two cents about what mattered to him.  What mattered to them was the ability to collect their data and show that he had mastery as defined by THEM.

Now lets talk about data. They use the data to justify the mastery of a goal or to modify it.  But how often did they the educators forget to collect their data or not ever collect it at all or they were inconstant.  Who suffers for this oversight or laziness?  Certainly not the educators.

Smart kids, physically disabled and the non-speaking or even the normal ones, learn quickly how to manipulate to get out of things they do not enjoy.  Many are successful at it by feigning sleep or suddenly needing to use the restroom, perhaps a tantrum, or just disruption of the lesson.  Smart kids find away to make things bearable.

Full-Inclusion... the Early Years

F was in a full-inclusion preschool the last half of his second year of preschool.  He loved the inclusion.  He had a strong teacher.  She focused on communication and assistive technology (switch access).  Unfortunately, he only spent about five months in her program.  When he aged out to kindergarten she strongly encouraged that we continue on with full-inclusion.  She felt that type of program could and would be really successful for him.

F's kindergarten year was hard. It had nothing to do with the school and the program. I suppose part could be due to the program, but I was really preoccupied during this time to really pay that much attention.  Things appeared to be going well and progress reports seemed to show he was progressing.

F's sister, Cienna, had been diagnosed  retinoblastoma when she was three weeks old.  She was now two and diagnosed with extra-occular retinoblstoma (a very, very bad thing).  This put her cancer in a more serious category and took the priority of trying to save her vision to trying to keep it from spreading.  She would start treatments during April of F's preschool year and it would go on through the summer.  Her treatments would end, not because she responded well, but because her young body could not tolerate them any longer.  Shortly into F's year of of kindergarten, she would be diagnoses with metastatic retinoblastoma on a routine MRI.  We were all devastated to say the least.  Cienna was handed a death sentence...literally.  So we were all a little distracted and I'm sure F was too.

So F's kindergarten year was pretty much a wash.  I can't say if he met his goals or not.  I can say that being around those healthy kids at school was probably a highlight and an escape for him at times.  I can look back now and say I should have never sent him to school that year. He should have stayed home with Cienna and I.  They were very close and her decline and subsequent death would be challenging for us all.  Cienna would pass away February 5, 1998.  After that time, I believe F's probably slept his kindergarten year away, or at least faked sleeping it away for the same reasons I could not get out of bed.  We were overwhelmed by sadness and grief.  Again, looking back he should have stayed home with me.

First grade through half of third grade F would continue to be a full-inclusion student.  He enjoyed his peer friendships and interactions.  He also enjoyed the curriculum.  The problems were that there was little follow through with the instructional aide due to lack of support with his goals.  While they should have been modifying curriculum and focusing on communication for him, F spent the better part of those years being an accessory to the classroom instead of a participant... if that description makes any sense to you.

They tried to work on communication by focusing on yes and no using his strength of a head turn.  However, the individuals involved in implementation, did it so inconsistently or documented it incorrectly that they were constantly changing which head turn was for yes and no.  Poor F had to be so confused. Granted communication was hard for us at home too.  We had no definitive yes and no and we were probably bucking the system every time the school changed their method and didn't communicate it to us.

So consistency in program was the hardest obstacle in full-inclusion.  Accommodating him in his wheelchair and his need for equipment for toileting and such was also quite a hurdle.  Then when we began to have a hard time finding a home health nurse for staffing they didn't want him to come to school.  They tried to tell me he couldn't come, even though it stated no where in the IEP that I had to provide a nurse for F to participate in a school program.

Curriculum support was nonexistent.  There was no modification of the curriculum at all combined with the inability to confirm his understanding made reinforcement impossible.  Although, I will say that I have learned the last few years that he was a sponge, still is a sponge, soaking up knowledge and information all around him.

The instructional aide was changed shortly after we no longer had a nurse available to send him to school.  Or due to family circumstances chose to use our nursing partly for support at home.  The district nurse told me this was done because the new aide had much better qualifications.  She was a respiratory therapist and they felt she better suited his medical needs. She was over confident because her dad was a paraplegic so she thought she knew it all about transfers, F's needs, and care.  On the two days a week I did send a nurse she talked trash about me the entire day to my nurse and to my son.  I tried and tried to get her removed, but the district deemed her appropriate.  That is until she called me to pick him up for emergency medical care because she broke his femur while moving him from a stander.  As of a few years ago, she still had her job.

So in a nutshell, full-inclusion meant for my son was absorbing knowledge and information by being around it.  Inconsistency in goal implementation, lack of support services, equipment, and curriculum modifications necessary.  He was well socialized and excelled in making friends even without a consistent ability to convey his understanding of them.  The "we can't tell if he understands us"would be consistent all through his records because if you can't speak, are in a wheelchair, and visually impaired the instructors, support staff, and administrators automatically assumed he is incapable of understanding the English language. He was also assumed to be very low functioning intellectually.  I was even told at times that I only read into his behavior what I want to see.  That I've convinced myself that he is smarter than he is. It was "coincidence" that he laughed appropriately at jokes or in audio books that were funny. It was such a struggle and a fight for me.  I can only imagine how F felt.  He was more like a classroom mascot, but these years in middle school would be far better than the time he spent in a middle school special day class.

IEP's and Consultation Services

I realized when I did my post about being prepared for IEP's that I left out a very important thing.  That is consultation services, direct services on consult model. Call it whatever you would like, if it's a service that contains any word close to "consult" it's a bad thing.  I don't know how "consult" services were explained to me for many IEP's, but the program specialist talked a good talk.  They list the services and next to each one how many visits and duration.  On paper it looks like a lot of services when you see all those numbers next to PT, OT, Speech, etc., but it's really just for documentation if it contains the word consult.

What I would learn when I requested all of my son's records would literally shock me.  Okay, maybe I was just clueless and naive. Maybe the way the program specialists through the years talked in circles and prettied things up convinced me it was something it wasn't.  I'm not really sure.  All I know is I felt duped.  I felt like I had been sold a product that really wasn't what it was.  Consult model means that whoever the provider is, let us use PT, never has to come and see your child within the classroom.

For example, The IEP would state 6 visits for 30 minutes per year and either be marked consult or have it written next to it.  The PT would call and speak with the teacher on the phone about my son.  Inquire as to whether they needed any support or assistance and that would count as a visit.  The PT never stepped foot in the classroom, but it was document that my son received PT based on that phone call.

As it was explained the PT, or whatever service you choose to insert, would work with the classroom staff and they would be implementing the services.  I'm not really sure how this qualifies as physical therapy, occupational therapy, speech or vision services. All I know is throughout my son's records I saw a lot of remarks regarding these types of visits.  And yet, when my son failed to meet goals it was always his fault.  It never had anything to do with the fact that his services were the equivalent of a chart review and phone conversation.  This is why you should be very mindful of your child's records.  If your child isn't making progress and the IEP team can't really account for why the student isn't making progress without blaming the student, it's time to take a hard look at the goals and services. I wish I'd known this  very early on.

Please know that I don't believe that every child is short changed in the education system.  I have just a tainted perspective.  I hear far too often about more children falling behind or about teaching staff or districts who talk about implementing things for students that never come to fruition.  It happens a lot.  As parents and advocates of these children we really have to be very diligent at staying on top of things.  The education system will not serve our children without our involvement and support.

Being Prepared for IEPs

Although we no longer participate in the IEP process, I thought I'd share some helpful information that I learned along the way.  There are many aspects to the IEP process.  I am not an attorney or all-knowing specialist regarding them.  I merely learned some very hard lessons through our IEP process.

The IEP in a nutshell is your child's documented guide to their education.  It should be based on appropriate assessment of their individual needs and strengths. One thing I discovered, and it's a big thing, HUGE really... is that my son had been negatively cognitively labeled without one cognitive assessment by a highly-trained and qualified individual ever being done on him.  The level, or lack of cognitive levee, was assumed and it did a lot of damage to his education and intellectual performance. If only I'd known then what I know now.  Particularly since I trusted individuals within the process to assist and guide me.  They were not on my side nor F's side.

So in a nutshell I'm going to list some things that I wish someone had told me.  I cannot at this time go into my son's long drawn out education and hit the highlights.  If you visited my About My Blog page then you know that I want to cover a lot of territory.  For now, I just have to put things down that I think can be the most helpful and beneficial.  If you have questions, please comment or contact me.  F and I are pretty open about our experiences.  You can email us at:

Lemonadeandporcupines@gmail.com

Key things that I think very parent should remember:

• Your IEP team is payed and employed by a school district or third-party provider.  They do not work for you.  They provide a service and that service is controlled and dictated by the employing district.  They all appear to have your child's best interest's at heart and many educators and DIS providers really want your child to succeed, but and it's a big but, they may have their hands tied and you may never know it. 
• Document EVERYTHING in writing.  A small conversation you have had with any provider, teacher, administrator should always be documented and submitted back to them for verification.  If they do not correct the document it becomes fact and a part of your records that you maintain for your child.  If they are doing a good job they will also make those documents become part of your child's school records.  This documentation, no matter how small or trivial you may believe it is, can be your best asset should you need it later.
• Always communicate your requests for assessments, progress reports, IEP's, etc. in WRITING.  Always copy all participating parties and administrators (teacher, program specialist, princiipel, etc.).  Document, document, document.  Notice the emphasis on DOCUMENTING!
• Always record your IEP meetings.  You must give notice to the district in writing, and if memory serves me correctly, 48-hours notice is required.  But you should know the meeting is scheduled and be able to plan for that. 
• Assessments should reflect what your child CAN do and their strengths.  If they reflect that your child is happy and has a supportive family that cares them... that's not really about what your child CAN do, nor is it an individual strength.
• It's a good rule of thumb to ask them to give examples and to show you what goal implementation looks like. I like them to support their motives and intentions with regard to goal setting and their plan for implementation.
• For children with health needs, remember to make sure you have your doctor's orders as specific as they can be and include them in the IEP details.  Don't just fill out medical forms and expect those things to be addressed as part of the IEP.  If it's not in the IEP it doesn't have to be done.  For example, two-person lifting.  My son had an aide that worked for him, put in place by the district, she did not think she needed to perform a two person lift.  She would subsequently end up fracturing my son's femur during his school day.  To this day, we do not know exactly what happen, but we have an idea of how it occurred, confirmed by our son. Two-person lifting was not addressed within our IEP.  
• Your child's records, request them.  Read them, get to know them.  Look at what has been done and/or not done.  You want everything IEPs, assessments, health records, transportation records, medication logs, etc.  There is no piece of paper in your child's file that is not important until you have looked at every single one.  It takes time, but trust me you will learn a whole lot about your child's education or lack of. I discovered my child wasn't receiving an education.  He was participating in childcare. 
• When my son failed to meet their crappy goals he was blamed for it.  It was never the teacher's fault or the DIS providers.  It was my son's failure.  According to them it had nothing to do with the fact they didn't follow through or implement the goals.  Nor was it because their goals were not based on assessments.  According to the IEP team it was because my son was unmotivated, unteachable, and unhealthy.  Nor did they ever take into consideration the learning environment. 
• Don't sign an IEP at the meeting.  Take a copy of the IEP home with you.  Read it add notes and make corrections to it as needed.  Make sure it clearly represents the meeting along with your input and participation.  The district I was in, only documented what they wanted documented in the IEP.  Once I became skilled at this... it frustrated them tremendously because it began to create a history of what they were NOT doing.  I began to get control of my child's education and it made them uncomfortable.
• If at any time you feel your child is not safe at school, do not take these feelings lightly.  Go with your gut.  Make unannounced visits at the classroom.  You can come up with a valid reason to stop by and see your child.  Catching a glimpse of what's happening when you arrive unexpectedly can tell you a lot about the classroom.
• If your child comes home crying multiple times in a week and they are nonverbal, try not to brush it off as just being uncomfortable.  This happened to us and I merely though my child was in pain.  It wasn't pain it was boredom and stress he was under in the environment he was in.  Listening to screaming kids and and fearing one that was aggressive was not a positive learning environment for him.  If only I'd investigated further.
• Know that you are your child's best advocate.  You may have to be a squeaky wheel, you may have to invest a lot of time, but you know your child best and never let anyone convince you that you are not the expert on your child!

I chose to hire an advocate to teach and educate me about my child's records and the IEP process.  She came to the table with a different eye view.  She made all of the difference in how I saw my son as a student. The knowledge I gained from her was invaluable. It still helps me to this day. 

IEP's are stressful. Mine became so contentious that it gave me anxiety to deal with the program specialist.  I tried and tried to negotiate with the district. I documented my son's case meticulously.  I even filed compliance complaints.  However, educating my son was not a priority.  I eventually hired an attorney and worked  the process with representation. 

Hiring a Paraeducator

F's current paraeducator, who is a college student, has found that her college schedule is too hectic to continue working with F.  He loves what she brings to the table, but has felt that she has had conflicts in meeting his educational needs as per the job description.  So here we are in the middle of our school year posting for a new paraeducator.

I'd like to fill the position as soon as possible, but I know that it will take time to find the right person.  I'm discouraged and frustrated.  I wish communication had been better between his current paraeduator so that we would not be in this position at this time.  I realize that I'm responsible for my part in the lack of communication.  I'm just seriously overwhelmed while wanting to respect F's space so that he didn't feel that I was being to invasive in his lessons and his learning.

Hopefully, our posting will get responses.  I don't want to be discouraged.  I especially don't want F to be left behind again, by the education system.

Praying we find the right person for him very soon!