Posts Tagged ‘IEP’

Our new school appeared to be very nice.  The principal immediately set up a meeting to discuss my son.  Besides himself, the school nurse, a counselor, and a couple of different teachers attended.  I explained to the group that we were originally in Ohio, temporarily transferred to a Wisconsin school for about three weeks and were now living in this school district.  I explained to him that my son’s kindergarten teacher had already recognized that my son had learning disabilities and that they were just starting the process of getting my son some support when we had to move.

It was during this meeting that the principal indicated that they only request records from my son’s previous school, which was the three week school.  In the end it was obvious to me that the three week school had not received any records from Ohio yet and as a result of this had no indication regarding arrangements to be made. 

The remainder of the meeting that day consisted of a discussion about my son’s epilepsy and we watched a video, where his seizures had been captured on tape.  I wanted to make sure that the school could recognize the seizures, because my son’s seizures did not present themselves in a typical, grand mal-like fashion.  I also wanted them to understand what the vagal nerve stimulator was, which my son had, and what to do with it if a seizure should occur.  In the end a health plan was put into place to cover how to deal with the seizures.  At that time, no more discussion occurred about learning disabilities.

It took me about a year to find a good neurologist to take my son’s case.  Originally we went to Mayo Clinic, which was one of the reasons we chose this area to live.  After about three appointments at Mayo, it was obvious I was getting nowhere with them.  Meanwhile my son was having seizures twenty or more times a day.  I finally found a neurologist in a nearby city.  He did a short-term EEG, followed by a stay in the hospital for a long-term video EEG and a MRI.  In the end the neurologist confirmed that my son’s seizures originated in the front left lobe of the brain, with a tendency to spread to other parts of the brain (this is sometimes referred to as the Jacksonian Spread).  He then prescribed two medications.  After about four weeks we still had no relief and he changed one of the two seizure medications.  Within about two weeks my son’s seizures had drastically reduced.

This neurologist also spent time explaining that other things can come with seizures, such as learning disabilities, ADHD, and other things.  He then scheduled my son to be tested by a neuropsychologist.  She would do extensive testing, and provide recommendations for accommodations for school.

By this time, my son was approaching the end of first grade.  The school finally recognized that my son needed an IEP, which was classified as Other Health Impairment, due to the epilepsy.  They told me that they would do some testing to determine my son’s needs.  I shared with them that my son was being tested by a neuropsychologist.  The school sounded grateful when I told them I would share the findings with them as soon as I got the results. I think in the end there was only one additional test the school ran that was not covered by the neuropsychologist.  Thankfully the neuropsychologist gave us detailed recommendations for services or accommodations needed for my son.

Once the school drafted the first IEP they were pretty diligent in including the recommendations from the neuropsychologist.  Besides day to day accommodations, they included access to a reading specialist, a language specialist, and an occupational therapist.  My reaction to this was:  so far, so good.

Soon my son was in second grade and was still having a few small seizures each day, but non as drastic as they were in kindergarten.  By the end of second grade his teacher talked to me privately and said that my son was also struggling with math, especially with the topics being learned at the end of the year.  I asked her for her opinion about shifting my son out of the main stream class and into special education.  She thought it was a good idea and came to my next IEP meeting, which occurred at the end of second grade.

From this IEP meeting, I started catching onto the games played with the “IEP.”  In our experience more time was spent figuring out how to fund accommodations rather than identifying the needs for my son.  The  IEP carry over process from year to year was done in a nonchalant manner and became more watered down as time went by.  I was new to all of this and did not know what to do.  At that time, I thought my son’s education was in the hands of experts who should know what needs to be done.  The big catch was they appeared to be so nice and caring, but in reality they were trying to just “deal” with me, and then do their own thing. 

I was very concerned for my son and knew how critical reading and math were.  I knew that if you successfully learned how to read and do math you could be successful in life.  So I took the matter into my own hands and that summer hired a tutor to work with my son.  The tutor happened to be my son’s second grade teacher. She was successful of getting my son to advance by two reading levels.

Third grade became a pivotal year for us.  A lot happened and the real nature of  the broken school system began to show its under-belly.

Continued . . .


Just before we decided to home school, I had an odd discussion with my son’s special education teacher. As you know the discussion of inclusiveness is a hot topic in education. The discussion with my son’s teacher was triggered by an email I had received from the school which included a copy of the school’s newsletter. I read through the lengthy newsletter which included a couple of paragraphs from each class that described their latest activities. The newsletter was pretty long because each grade in the middle school is broken down into sub classes or pods which coincide to a specific location in the school, which is a hub for their core classes. It was also apparent that the teachers of each class were the authors of the newsletter, or at least the source for each article. In addition to theses articles there were also stories from non-core subject teachers including Art, Physical Education, Music, etc.

Some of the articles in the newsletter were very generic and others called out specific students and their specific highlighted activity. After going through the newsletter I noticed there was no article from my son’s special education class. It was noticeable to me because obviously I was looking for his specific class. After further consideration I noticed that there were no articles from any of the special education teachers.

My initial reaction was that it was odd. I would have liked to read about what has been going on in my son’s main class, which was special education. The more I thought about it the more I got irritated. I didn’t understand why these classes were excluded from the newsletter. Besides being irritated I was also sad. This was an example of exclusion. I truly did not understand why the school would decisively exclude these classes from providing class news in their newsletter. As a parent of a child who has learning disabilities, I am very proud of his achievements. In addition since there has never been school work, assignments, or evidence of class activities brought home on a daily, or even a weekly basis, I didn’t have a lot of information about what topics my son’s class was studying. Like many parents I was always asking about what was going on at school, but, like many 7th graders, I got the “Not much” response from my son.

I also understood that in his class there are varying levels of abilities, but I also had a sense that there were commonalities between the topics discussed. For example, if they were studying geography, the whole class were studying the same topic. So once again I didn’t understand the reason for the exclusion. I still could not come up with a logical reason for the purposeful exclusion. In addition I was like any other parent and wanted the benefit to receive the same information as any other parent. It then hit me that not only was my son being excluded, but I also was being excluded.

In the end I was shocked, frustrated, and a little angry. Getting my son an education has always been a battle. It was frustrating to me that the school, who should be the experts, did not offer suggestions on how to educate my son. I had to fight for everything in his IEP and it would have been nice to have an “expert” to make suggestions. They work with my son every day. Who should know what he needs? His teachers! Sorry for the diversion, but the whole IEP is a ruse and another way for the educational system to fail at providing an education. It is a vehicle of smoke and mirrors to make it look like they are providing an education. It is also a bunch of red tape for them to justify their funding.

Anyway, I decided to reach out via email to my son’s teacher to ask why she did not include a story in the monthly newsletter. I was totally shocked at her response. Keep n mind she is my son’s special education teacher. She chose this career and obviously, at one time, had a passion for teaching special education. I recognize it takes a very unique individual to serve in this role and it was not an easy job. It is also obviously clear when a teacher has this passion. When they don’t have the passion, which we had seen in the past, the situation was a disaster. In this case I knew she had the passion. In this case she was also in charge of my son’s IEP, which also implies that she should be highly aware of the laws surrounding an education. She had also, in the past, shown evidence of knowing the importance of inclusion.

In the end her response was that this decision was to respect the privacy of the parents who had children in special education. She went on to say “How would you like to be a parent and have a reference in the newsletter which implied that your child was not in the mainstream classes and was in special education.” To be honest, I was flabbergasted. These statements were coming from my son’s educated special education teacher, who apparently was feeling “shame” for these students and their parents. I asked myself, did she really think that it is not known that my son is in special education. The kids in school know it. And the parents know it too. We have been with all of these children since kindergarten and with that much time you learn which kids are in special education and need a little extra help. In addition, DUH, my son talks to me about his classmates. I know who is in his special education class.

Secondly, I have never met a parent who didn’t have pride in their child. I am not ashamed that my son was in a special education class. And I would be willing to bet that every parent of a child that is in special education, whether it be for developmental delays or for learning disabilities, is just as proud and concerned as any other parent in that school.

In addition there was no reason a specific child’s name would have to be mentioned in the newsletter. I found it hard to believe that this teacher did not have the skills to write a couple of paragraphs about her class without listing specific names of the children. And then on top of it all, she was insecure enough to feel “shame” in these children. I also wondered what type of lesson did this demonstrate to my child. I wondered, if this was happening with a mere newsletter, where else was this happening?

I think this moment was the beginning of my decision to pull my son from this educational system and teach him myself. I didn’t want him to be with a teacher or a school that was ashamed of him. More importantly, I wanted him to get an education, which wasn’t really happening neither. So here we are. Home schooling. And we are proud of everything we do, and I am very, very proud of my son.

You may already know that I have a son who has several medical issues including Tourette Syndrome.  For the last four years we have sought some relief from the tics which have become more extreme over time.  Up to today we were working with our pediatrician, my son’s neurologist who takes care of his epilepsy, a clinic that uses non-traditional methods, and a neuropsychologist.

The neurologist hasn’t been convinced that all of the events my son has been having are tics.  There is some suspicion that they may be non epileptic seizures, or a combination of both tics and non epileptic seizures.  In pursuit of gaining some relief from these events,  he referred us to a neuropsychologist.  In addition he prescribed, at one time or another,  antihypertensive medications, which are medications whose original purpose is for treating high blood pressure.  The medications we tried included Clonidine (aka Catapres) and Tenex (aka Guanfacine).  Unfortunately the side effects can include sedation, dry mouth, fatigue, headaches and dizziness.  The sedation affect wiped out my son and we discontinued using them.

The non-traditional clinic we saw, which was a part of Children’s Hospital, worked with my son to learn bio feedback.  My son became really good at this.  Unfortunately it didn’t work well with his tics because he needed to do it before the tics started.  Once he is caught in a round of tics he can’t concentrate enough to do the bio feedback.  The key is to identify triggers and hopefully try the bio feedback when a trigger is recognized.  We still try to use this method today, not only for TS, but also when he has to take shots for his diabetes.  It is a great way to just calm down.

This non-traditional clinic also had a psychiatrist that specialized in vitamins, minerals and supplements.  At one time he recommended that my son take:

Omega 3 Fatty Acids
Multi vitamin
Vitamin D

We did this regime of supplements for about six months.  Initially I thought it was working.  We actually had two weeks where my son had no tics. We had not experienced this since the tics had started.  Unfortunately this happened just before another school year started.  Once school started the tics came back with full force.

We continued to work with the neuropsychologist.  She was focusing on:

    • Identifying triggers for tics
    • Identifying tools to use when having tics
    • Tools to prevent bouts of tics
    • Addressing his anxiety
    • Addressing his sensory food issues
It is now four years since the tics started and we really haven’t found any answers.  I believe my son has learned how to identify some of the triggers and tries to minimize their effect.  He has also started eating different foods, which is a huge accomplishment.  I think he would be able to deal with his tics better if he didn’t have to deal with other people and their reaction to the tics, especially in the school setting. School is stressful enough for him, but when he has peers making fun of him, or dealing with adults who are ignorant about Tourette Syndrome, it makes it even more stressful.  This last school year my son missed a lot of school.  The combination of his tics, diabetes and epilepsy was a lose, lose situation.  Due to all of these absences I went on a search for a new specialist for the Tourette Syndrome.  Meanwhile the neuropsychologist suggested that we try medications again and was recommending an anxiety medication, even though we tried this in the past with no positive effect.

Meanwhile the school is pressing me to identify something which would change the circumstances at school.  They acted like I had a miracle cure up my sleeve and refused to recognize they were the main reason his TS was worse.  So, against my judgement, I put my son on the anxiety medication.  It took me about a week to get a hold of my senses and I took him off again.  There was also a period of time where the school nurse was pushing me to get some type of medication that would take the edge off these long bouts of tics that my son had.  She kept sending me names of neurologists, none with any specific expertise, just names.  She acted as if we hadn’t already seen doctor after doctor.  I also have learned that you just don’t pick names out of a hat.  Finding the right doctor is not easy.  Once again, against my instinct, we went to a pediatrician and she prescribed Valium.  I came to my senses pretty quickly on this one and never used them.

As a note of explanation, I am not against these medications.  There are times and people where these medications are not only effective, but necessary.  In regard to my son, in the last nine years he has been on numerous medications for his epilepsy.  Scary medications.  From this experience, I learned that getting the right medication is pretty much a trial and error type of process.  My son was already on a medication for his epilepsy that is also used for anxiety.  It was a benzodiazepine, which works by decreasing abnormal electrical activity in the brain.  Since there were questions about what these events were, I just didn’t want to haphazardly add another anxiety medication on top of the medications he was already on.

It is so frustrating to have an educational system trying to push you toward a medical solution that may not be the best for your child.  I finally wrote a letter to the superintendent, principal, nurse and his teacher that we needed to find a different approach here.  Drugging my son was not the answer.  There are some things we need to accept.  The TS is here and we need to deal with it as it is.  I don’t have any miracles to make it go away.  In addition, it is a fact that with all of the health problems my son has he is going to miss school.  We needed to expect it and plan for it.  It was my intent to push them into a new approach in educating my son, perhaps even supplying a tutor to keep him on track with his class.  Guess what.  No one responded to my letter.  Finally at the end of the school year his teacher emailed and said she would set up a meeting before the end of the year.  I didn’t here from her again.  At that point I just wanted to get through the end of school.  I would deal with the school before school started again.

Earlier in the year I had started looking for a new doctor that may have some expertise and offer a different direction to deal with the tics.  I also wanted someone who would look at the whole picture.  A doctor  said to me when my son was diagnosed with Type 1 Diabetes that it seems to be all related and is probably an autoimmune problem.  Keep in mind my son was dealing with epilepsy, Tourette Syndrome, (possibly nonepileptic seizures), Diabetes, an anxiety disorder, a little OCD, a little Aspergers, a little ADD,  and learning disabilities.  That is quite a bit for a 12-year-old boy.  I am very proud of him for dealing with it all.  I am not so sure I could do the same.  Up to now each of these medical issues were being addressed independently.

Anyway, I went on a hunt.  Thank goodness for the internet.  I noticed that if we were located on the east coast there would be more of a selection of doctors.  Even though we were near a large city, Minneapolis – St. Paul, there still did not seem to be any experts.  So I just started calling hospitals and clinics and requested recommendations.  Initially they weren’t much help.  After reaching out to 30 or more medical centers I called the University of Minnesota Hospital, and they suggested a doctor.  After contacting his office, I found that he had a waiting list and it would be five months before we could see him.  That in itself meant something to me.  It was obvious that people were seeing him.  It was either because there just weren’t that many specialists or he was really good.  I decided we would wait and we would find out.

Finally the five months passed by and it was the day for our appointment.

To be continued . . .

May 15th through June 15th is Tourette Syndrome Awareness Month.

My family has been greatly affected by Tourette Syndrome.  My son has tourette syndrome and every day that he has tics is a struggle.  Dealing with the disorder is one thing that is hard.  Even more complicated is explaining his behaviour to those who may have seen him have a bout of tics.  The stress all of this while he is going to school and trying to have a “normal” life is exhausting.

On a daily basis I scour the internet for research news or new treatment methods for Tourette Syndrome.  I do this for a number of illnesses, and it has become apparent to me, based on the insignificant amount of research activity, that more people need to become familiar with the disorder.  Once their awareness is raised, hopefully they will join the cause and push for more research to find a cure.  May 15th – June 15th is Tourette Syndrome Awareness Month.  Watch for updates on this blog during the awareness month.  Take a moment and join the cause.

Take a look at the facts about Tourette Syndrome:

  • Boys and men show the symptoms of TS more frequently than girls and women. The ratio is about 4:1.   
  • There can be other conditions associated with TS, in particular OCD, ADHD, and Sensory Processing Disorder   
  • TS is a tic disorder. It is a neurological condition. It is not emotional in origin but it may have psychological consequences and effects.   
  • A tic is an involuntary movement (motor tic) or sound (vocal tic). Tics can be ‘invisible’ – intrusive thoughts or compulsive behaviours.   
  • Movements may vary from minor (eye blinking) to severe (complex movements of the whole body).   
  • Sounds may vary, from throat clearing to whole phrases.   
  • Phrases can be repeated, from whole words to parts of sentences (Echolalia)   
  • Although the movements are involuntary, the person may be able to control them at times, although this takes a lot of concentration.   
  • People can ‘suppress’ the tics for a period of time, but they will always need to tic when they feel safe to do so.   
  • A child may control or suppress tics at school; however they may then tic constantly for a while as soon as they get home.    
  • A teacher wont realise a child has tics if they ‘suppress’, but it also means that the child will not be concentrating on school work.   
  • A child may only release the tics in the privacy of their own room, so that others, even parents, aren’t aware of their existence.   
  • Early multi-diagnosis, positive intervention, medication/alternative therapies may help someone living with TS.   
  • Someone living with TS – what may help – understanding from family, friends and public.   
  • Someone living with TS – what may help – understanding from Health, Education, Social Work, Employer.   
  • Someone living with TS – what may help – regular breaks/support for parents/care providers/siblings.   
  • Someone living with TS – what may help – contact with others through Tourette Sydrome Association  
  • TS, which was once thought to be extremely rare, is in fact one of the most common genetic diseases affecting man and many people have it.   
  • Tics range from mild to severe and can change over time, ‘wax and wane’ so they don’t stay the same for life.   
  • People with TS are often of high intelligence, and are often creative or artistic.   
  • TS is genetic and can run in families, which may also include someone with Asperger’s or OCD, ADHD or similar conditions.   
  • Teachers can assist to make a positive learning experience for a student with TS, by creating a supportive environment in the classroom   
  • Awareness raising should include the personal experience of those with TS, which is helpful in explaining the varied aspects of the condition to others and in gaining empathy.    
  • Use of methods such as ‘Time Out’ and working with the student on their individual learning plans.   
  • The use of management tools, can assist the teacher and the student in smoothing the way for productive learning relationships.   
  •  More understanding, in that the condition has many facets, should be sought and teachers be made aware  of the particular traits and challenges facing the individuals in their care.

Information from the Tourette Syndrome Association.

I was watching Oprah Winfrey’s final shows this week. There were several presentations regarding her contributions to education including her celebration of teachers, the girl’s school she founded in South Africa, her ability to touch the lives of so many children, her book of the month club or the scholarships to young men at Morehouse College.

As I watched this show honoring her, I wondered to myself what about my son. Will he ever feel the rapture and the power of education? Will college be in his future? If not, what will happen to him? What will his life be like? Without education beyond high school, I knew his life would be hard. Both my husband and myself have degrees from college. Even with this education, our life has been a challenge. I can’t imagine facing life without that little extra knowledge and without the advantages it may bring.

Right now my son’s education is in the hands of our public education system. This is the education system that everyone is talking about as failing to prepare our children to be leaders in the world. This is the education system that needs to be completely overhauled. Now keep in mind all of this criticism is in reference to mainstream education. This criticism is in reference to the children who don’t have reading problems. These are the children that do not have problems doing mathematics. These are not the children who have autism. These are not the children who struggle with school, who need to learn things in a different way, and who have learning disabilities.  I am not talking about the children that have developmental delays.  I am talking about children who need a little extra help.  There is a group of children who do not fall into the classification of children with developmental delays or in with children in the mainstream educational programs.  I am not talking about have a “quality of life” plan, which is directed at children with developmental delays. 

So what is a mother to do when she has a child that has learning disabilities?  How does she ensure that her child is prepared for an adult life, facing the world on their own?  This topic leaves me sleepless at night.  I don’t want my son to have to struggle, especially as a result of limited or inferior education. 

As you may already know there are scholarship programs for post secondary school for children with special educational needs.  Young people with special needs are finding their way to college more and more, as disability law mandates access to classrooms and campuses, and programs are developed to meet the needs of students with intellectual disabilities.  I am very thankful that these opportunities are available.

My concern is not with post-secondary school.  My concern is getting my child to post-secondary school.  I know that my son is at serious risk for dire consequences of not receiving a proper education.  If his education continues as it is in the public school system, he is going to have a hard, hard life.  So when it comes to scholarships, I need the help now. 

I need maximum access to any educational resources available so that I can get my son through middle school and high school.  I can’t rely on the public schools.  They don’t care.  Children like my son are considered to be a burden on the schools’ budgets and are the first place they cut.  It is very obvious to me that the public education system has an objective to limit resources to a child such as mine.  They seem to be very complacent to continue passing him from grade to grade without meeting any measurements of a quality education.  From what I have seen so far, the Individual Education Program is useless in regard to this.  It is a facade to make it look like they are providing an education. 

As evidence of this, our school system has been working with my son for 3 years learning basic math facts.  The reality of the situation is, if they were really vested in his education, he would have surpassed this level of math in year one.  The other evidence of this is my IEP meetings.  Everything is presented as going “great.”  I am not stupid.  I can see where my child is at, as compared to other children in his grade. 

My frustration is that I see me child falling further and further behind in a school system who doesn’t care.  I want to get him additional help, but I can not financially afford it.  I need help and I don’t know where to turn too.   Like I said, I appreciate the scholarship programs for post-secondary school, but I need scholarship programs now to get my son through secondary school.

My employer provides a scholarship program to the children of their employees.  Once again it is only for post secondary school.  I actually submitted an application for my son, and of course it was rejected.  From my perspective what good is a post-secondary school scholarship if I can’t get my son through secondary school.

I write this story to raise awareness.  I don’t think there is enough public attention on this subject.  I am sure if more people saw this topic through my eyes,  more could be done to help children such as mine.  I will continue in this awareness campaign, and continue searching the web for some program that may give my son a sliver of hope. I realize teachers have a hard job, but I need to focus on the child that I am responsible for, and at this point the teachers have let us down.

For more information on post-secondary education scholarships, check out these sites: