Posts Tagged ‘learning disabilties’

As I mentioned in my previous post, 6th grade for my son went fairly well.   My son had adapted to the Middle School really well.  He also enjoyed his special education teacher.  There were a few red flags including the focus of his IEP meetings was about accommodations for state testing, there was a discouragement to participate in parent teacher conferences, and a debate about the number of excused absences.

Finally 7th grade rolled around and the year did not start off the greatest.  My son was having extreme tic episodes that would go on for hours.  We had been in and out of emergency several times, with no real help except sedation.  Of course these events resulted in absences from school.  At this point the school was requiring a doctor’s excuse for the absences.  This was a bit ridiculous because we did not run to the doctor every time my son had episodes of tics.  If so, we would be at the doctor’s office every day.  This requirement was really becoming a burden on myself and my family.  It was requiring us to go to unnecessary doctor appointments  which in turn resulted in additional medical expenses, more missed days of school, and missed work for me.  The situation was frustrating. 

At one point I showed the school nurse and my son’s Special Education teacher a video of the tic events which were happening.  They understood the seriousness of the situation.  I explained to them that we had to figure out a way to keep the education process going.  Their suggestion was to get more help from the medical community, which in turn meant more doctor appointments.  My son was already seeing a very good neurologist and a neuropsychologist.  I was really desperate for help and started to go along with the recommendation that involved, as the nurse described, a community approach to my son’s circumstance.  They were suggesting involving  government agencies, the school and social workers into the process.  Once again, there was an expectation that the solution was to change my son.  I tried to point out to them that my son’s medical condition was not going to change, at least not in the near future.  Instead we needed to identify a way to accommodate him.

Here is where the enlightenment happened to me.  I was expecting them to think outside of the box in regard to accommodating my son.  For instance, we could have tutoring, or other methods of getting the materials to my son, other than via classroom attendance.  We needed to fit his education around his availability.  I could not predict when he was going to have these bad tic events.  Also, if he was in school, there is no way he was learning anything or was engaged during these tic events.  It was really teaching him a bad lesson in life — such as going through the motions is enough. 

Since the team was not capable of thinking outside of the box, especially with no major bureaucracy involved,  I realized that the only reason I was going along with the school’s recommendations was to get them off my back about my son’s absences.  It had nothing to do with my son’s well-being.  We already had the best doctors in the field.  It had nothing to do with his education.  It had more to do with bureaucracy such as attendance policies.  I also realized I didn’t need government agencies imploding into our lives and adding additional stresses on the situation. 

I then began re-evaluating the education that my son was receiving.  For the last several years I had concluded that they were not pushing my son enough in school.  He was capable of doing so much more.  While evaluating the situation it occurred to me that the schools were not even meeting the educational goals in my son’s IEP.  A goal is supposed to be able to be achieved in a school year or less time.  In the last four years, I think my son had only achieved two of his IEP goals.  The remainder of the goals just kept rolling over from year to year, or worse, and just disappeared.  I realized they were making no progress.  As an example, my son was studying addition and subtraction facts for the last four years.  He had made no progress in math since third grade, which was the year he started having tics and the year they moved him into special education classes.  I just didn’t understand how no progress had been made in four years.  On top of it all, this is a boy who had figured out addition on his own before he started kindergarten.  Math was supposed to be one of his strengths. 

It was these events that brought me to the conclusion that my son was not being educated in this school system.  He was not making any progress.  He wasn’t being given the same opportunities as other children.  I asked myself who is going to pay the price for my son’s lack of education.  The school?  No.  Instead it would be my son.  I was concerned that if he didn’t get a basic education what was going to happen to him when he became an adult.  To be honest I was totally stressed out about this situation.  I knew my son was just being passed from grade to grade with no tangible goal in mind, other than how to move him through the school system with the least effort and at the least cost.  I knew then that I needed to intervene.  I berated myself that I hadn’t intervene sooner.  Once again I thought our educational system had my son’s best interest in mind and that they were the experts to creating a successful educational environment for my son.  Well, I was wrong.

It was at that moment I decided that I had to take matters into my own hands.  I had to make sure my son had a future.

Continued . . .

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 . . .

Having a child that has a chronic medical condition is challenging.  Dealing with the actual medical aspects and doctor appointments is one thing, but trying to reconcile the emotions associated with the situation is a whole new challenge.  My son has had epilepsy since he was 3 1/2, Tourette Syndrome since 2008, non-epileptic seizures and an anxiety disorder since third grade, and was diagnosed with Type 1 diabetes last year.  On top of all of this he has some learning disabilities. 

I sometimes wonder whether anyone understands what we are growing through.  Dealing with these medical issues is overwhelming.  With my son, you never know when a seizure is going to happen and you have to be in standby mode until it happens.  Then diabetes has turned a spotlight on him. It is there in your face, when you exercise, when you eat, when you drink and when you sleep. Always there, always present. 

We were also hit by another blow when it was determined my son had learning disabilities.  After five years, this is still a shock for me.  Both myself and my husband graduated from college.  I have a great career.  Both of us excelled at school.  For me school was easy and I had dreams for my son.  The learning disabilities pretty much destroyed those dreams.  It is not so much about the education. I knew my son was smart, but needed to learn things in a different way. My fear really was around quality of life. Life is not easy and education gives a slight advantage ahead of the masses. I wanted my son to have those advantages and possibly not struggle with life. I had to come to turns that my son’s life was going to be different from what I expected.  It was really hard getting my head around this.  I kept thinking he could get well and he could “catch up.” 

I often wonder what it would be like to not have to explain to my boss that I have to take my son to a doctor every other week, or that the school has called and I need to go pick your son up because he is having some medical issues, or that my son has had a really rough night and I need to stay home with him.  My boss hates this.  I even got on intermittent family medical leave, but he still hates it.  Every day I worry about whether he is going to get rid of me. 

As we have been going along this challenging journey, I thought about how you change depending upon where you are in the cycle of dealing with chronic medical illnesses.  It is almost like the stages of grief.  At first you go through denial.  When my son was first diagnosed with epilepsy, I was constantly doing research to identify how and why this happened.  It wasn’t until almost two years later when I realized it didn’t matter.  He had epilepsy and learning how this came about was not going to lead to a cure.  I also spent years going from one specialist to another, hoping one would have the magic answer that would put all of this in the past.  Yes, I was in total denial.  Rather than focussing on living life with epilepsy, I was stuck on researching the why’s and how’s, which was a useless endeavor. Even if I found out why and how, how was that information going to help the situation? We are still stuck treating the symptoms and mitigating their effect.  Each specialist we saw was just another flavor of the same thing.  We saw medical doctors at Children’s Hospital in Ohio, the Cleveland Clinic, Mayo Clinic, a New Jersey specialist in movement disorders, and lastly an Epilepsy Clinic in Minnesota.

I also went through a period of anger.  I didn’t understand why doctors couldn’t first of all make a diagnosis and secondly determine a treatment.  We were stuck in this trial and error mode while we were trying to find the right anti-epileptic drugs that would have a positive affect, and reduce or end my son’s seizures.  It was frustrating.  They were the experts.  Later, it was even more frustrating when I couldn’t get a neurologist to look at the whole picture of my son’s medical condition.  There were so many things happening and they would just react to one symptom or another.

We have also sought spiritual guidance with this situation.  We have worked with pastors from several churches from around the world.  Everyone was praying, praying for a cure.  Looking back, I think we should have been praying for a life, a life with medical issues, but a life of living, rather than grieving.

Parents and children also can get caught in a state of depression.  At times nothing seems to be good happening.  Your thoughts go to “why me.”  My son will beg me to make it all go away.  I don’t think we are quite through this stage of grief.  These medical conditions have engulfed our life.  I am always telling my son to look toward those things that are good in his life.  Think about those moments that bring happiness.  Sometimes, one gets so focussed on the bad, that it is hard to see the good.  I haven’t quite figured how to get unstuck from this stage.  Talking to other people doesn’t seem to help; it is just another reminder of the problem.  When there is a medical condition that reminds you of its existence every moment of your life, it is hard to get away from it.  For my son it includes taking his medications for epilepsy, testing his blood seven or eight times a day to check his glucose levels, avoiding those situations which trigger his tics, and then if they do happen constantly trying to suppress them.  It is stressful.  It is tiring.

I look forward to the time when both myself and my son reach acceptance.  We recently decided to take control of his education and made the decision to home school.  Perhaps this step toward homeschooling is the first step of acceptance.  We know it will take hard work.  We also know that we will do it together which will strengthen our bond.  We now have control.  We can do what his school could not do.  We can pursue education when he is fit to be educated.  I could also mold his education around his needs.  We could also focus on his talents and I think we will find his abilities are far beyond what the schools had pigeon-holed him as.  I also think we will have many opportunities to experience joy while we are on this journey. 

So, dealing with chronic illness can affect every member of the family.  The effects can follow the stages of grief. Denial.  Anger. Depression.  Acceptance.  Both the child with the chronic illness and the child’s caretakers go through each of these stages.  I also suspect that these stages recur as you fight the challenges of the chronic illnesses.  It is true one may reach the state of acceptance, but I am quite sure something will happen and one will be thrown back into that mode of denial, and so forth.

I think understanding that this is happening is probably the best way of getting through this.  By having an understanding, one will know that how one feels is perfectly normal.  It is expected that you would feel the way you do.  It is what makes us human.

This is a continuation of a post called  The onset of Tourette Syndrome and my son . . ..

In earlier posts or from tweets on Twitter you may have already surmised that my son has Tourette Syndrome and some of the comorbid conditions that can go with it, such as OCD and ADHD.  Below is a continuation of some basic information about Tourette Syndrome and a description of our experience with it.

Some tics are preceded by an urge or sensation in the affected muscle group. Some people with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge to tic  or to decrease the sensation.

Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics.  For example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished. 

Tics come and go over time, varying in type, frequency, location, and severity.  Motor tics generally precede the development of vocal tics and simple tics often precede complex tics.

Although the symptoms of TS are involuntary, some people can sometimes suppress their tics in an effort to minimize their impact on functioning. However, people with TS often report a substantial buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed.

After my son returned to school it was obvious that the events were triggered by anxiety.  In school they were doing “rocket math”  which were sets of timed tests to see how many addition and subtraction problems they could get done in one minute.  The students each had a goal that they needed to accomplish, based on their specific writing speed, before they could go on to the next set.  While my son worked with the tutor  (which coincidently was his teacher) and I was observing, I noticed that just bringing out the green paper, which was used for these rocket math tests, would trigger a round of complex tics.  I also noticed that his teacher exuded anxiety with her voice and how she interacted with my son.  I could then see why he was having so much anxiety at school.

To help my son deal with his anxiety we worked with a specialist to identify coping skills that he could use.  We also met with an integrated health doctor who was an expert of using vitamin and mineral supplements to treat Tourette Syndrome.  In addition the integrated health clinic taught him biofeedback techniques.  To be honest some of these things worked for a while, and eventually were not effective.  The best techniques we found was distraction or music.  When my son was going through a round of complex tics I could hand him a full glass of water and the tics subsided.  It is as if the brain knew it had to carefully hold the glass of water to avoid spilling the water.  For a brief time it would stop the tics.  Overtime we also found that change of venue and music were the best items to use to reduce the duration of the complex tics.  My son carries his iPod with him every day in case he needs it.  Typically he has to use the iPod every day because his tics happened everyday.

In certain circumstances, such as public places, my son tries to suppress his tics, which is really hard to do and sometimes he is not successful of suppressing them.  He also tells me that if he suppresses the tics eventually they have to happen, and when they do the intensity of them is increased. 

Although the cause of TS is unknown, current research points to abnormalities in certain brain regions (including the basal ganglia, frontal lobes, and cortex), the circuits that interconnect these regions, and the neurotransmitters (dopamine, serotonin, and norepinephrine) responsible for communication among nerve cells.  The genes associated with Tourette Syndrome have not been identified and there is no potential cure at this time.

Many with TS experience additional neurobehavioral problems including inattention; hyperactivity and impulsivity (attention deficit hyperactivity disorder—ADHD) and related problems with reading, writing, and arithmetic; and obsessive-compulsive symptoms such as intrusive thoughts/worries and repetitive behaviors.  In addition, people with TS have also reported problems with depression or anxiety disorders. 

There is no cure for Tourette’s and no medication that works universally for all individuals without significant adverse effects.  The management of the symptoms of Tourette’s may include pharmacological, behavioral and psychological therapies. While pharmacological intervention is reserved for more severe symptoms, other treatments (such as supportive psychotherapy or cognitive behavioral therapy may help to avoid depression and social isolation, and to improve family support. Educating a patient, family, and surrounding community (such as friends, school, and church) is a key treatment strategy, and may be all that is required in mild cases.

 A study of 46 subjects at 19 years of age found that the symptoms of 80% had minimum to mild impact on their overall functioning, and that the other 20% experienced at least a moderate impact on their overall functioning.[1] The rare minority of severe cases can inhibit or prevent individuals from holding a job or having a fulfilling social life. In a follow-up study of thirty-one adults with Tourette’s, all patients completed high school, 52% finished at least two years of college, and 71% were full-time employed or were pursuing higher education.

My son is now in the sixth grade.  There has not been a day that he has not had tics.  Sometimes they are simply and sometimes more complex.  Over a period of time they change slightly.  He still has erratic body jerks and occasionally will include the loud vocalizations.  About a two years ago we tried clonidine (also known ass catapres, which is a blood pressure medication), which had no affect on the tics, but did have side effects, such as lethargy.  We ceased used it after about six months. 

Recently, a new tic appeared where he either slaps himself in the face or punches himself.  The situation is dire.  My son has continued working with a neuropsychologist on coping skills and reduction of anxiety.  We really have not had much success with this.  The concept of doing things to prevent the tics from starting has not really been understood by my son.  He is always looking for a solution to use as the tics are happening.  Perhaps as he gets older the preventive tools may make more sense.

Dealing with the medical community is very frustrating.  For many centuries TS was considered to be a psychogenic disorder.  Now with more information, there is recognition of it being a neurological disorder.  Yet there is still a belief that behavioral therapy can improve the situation.  I find this concept idiotic.  If you have spent some time with a person who has Tourette Syndrome,  you would understand it is not behavioral and truly is involuntary.  I guess the behavioral approach is to address the triggers that may cause tics to occur.  Our neurologist, who is an excellent epilepsy doctor, has no expertise with TS, or at least does not feel comfortable treating it. Our psychotherapist has suggested that we work with someone to try some of the other medications that are available.  So we are in the process of finding a specialist to work with my son.  So far, no luck. 

School has been a complete nightmare since this all started.  Over the last three years he has increasing fallen further and further behind in school.  The nature of his learning disabilities have become more apparent.  I have also noticed that the type of teacher also has a huge impact. 

I have had numerous discussion with teachers or the principal or the nurse, about the events being involuntary and not purposeful.  They repeatedly kept saying, it appears he does this whenever there is work to be done.  I told them perhaps the anxiety of the work was triggering them, and I pointed out the events do not always happen during school or while he is working on school assignments.  They also happen on the playground.   They happened while he plays video games.  They have happened right before falling asleep.  The principal of the grade school and I got into many, many heated discussion. I just wouldn’t give up.

In fourth grade he was assigned to a special education teacher.  that lasted half a year, and she kind of threw up her hands, and complained that he could not follow directions or could not identify, by looking at the other kids in the room, what he should be doing.  Now, she is a special education teacher!  If anyone should know how to deal with this it should be her.  In  fifth grade they assigned my son to an individual, who originally was classified as a social worker, and suspiciously became his fulltime teacher for math, reading and language.  This relationship went from good to terrible.  Some of the things she did was unforgivable.  She would punish him for having tics.  She complained he was not getting his work done.  She demanded that he continue working while he was having tics.  She would not give him privacy when he was have complex and never-ending events.  She was quite a  *itch (I apologize for the language, but if there ever was a time to use that word, this is the time).   By the time we hit fifth grade I begged my son to hang in there, because after that year we would be in a new school with different people, which should change the situation.  At one point I did not think we were going to get through fifth grade.

 

Someone must have been looking out for us, because this year in sixth grade, the situation is completely different.  My son’s teacher has worked with kids with Tourette Syndrome before.  The school in general is trying to accommodate him at the same time that he is getting educated.  He is in a class with kids with learning disabilities, and I think from a progress level he is ahead of most, if not all of the students.  As a result of this, his self-image has improved.  The biggest change is that the staff has empathy for the situation.  My son now LOVES school, loves his teacher and is making tremendous progress.   Next week is our IEP meeting.  We will see how it goes.

 

 

* The majority of the facts in this blog were gathered from a variety of sources including the Tourette Syndrome Association

.[1]Leckman JF, Bloch MH, King RA, Scahill L. “Phenomenology of tics and natural history of tic disorders”. Adv Neurol. 2006;99:1–16. PMID 16536348

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The onset of Tourette Syndrome and my son

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:

http://www.allianceforschoolchoice.org/UploadedFiles/Home/School%20Choice%20Yearbook%202010-11.pdf