This is a hard post to write-it is brutally honest and I was reluctant to share the intimate details of my son's life on such a public forum. Excerpts of this post were taken from a letter that I wrote to my son's school when we finally decided to homeschool. My oldest son, now age 12, has Tourette's Syndrome. Homeschooling was not our first choice and we worked diligently with the public school to get him the services he needed. However, we were viewed as one of "those parents." You know the type-overinvolved in their kids life, think they know their child better than the educators, asking for things the system can't (won't) provide. We were those parents.
We are finishing up our third year of homeschooling. There are days when it has not been easy or enjoyable. Other days, it is as easy as breathing. Patrick is a different learner. I hestitate to use the label "special needs" because we are all different learners. He is a highly intelligent young man who loves learning. At least he does now. But Tourette's has brought him some difficulties-especially now with the hormones of pre-teens kicking in.
Tourette's is a neuro-biological disorder that causes both vocal and motor tics. Often times, learning difficulties co-exist with this condition. While in public school, Patrick had many labels on his IEP. More labels (diagnosis) get you more services. What we learned was that the more services we obtained for him the more it dampened his spirit and inhibited his learning.
We fought for 4 years with the school system and when we decided to homeschool I was scared to death. I dreamed of homeschool days where Tourette's wouldn't affect my son. Somehow with homeschooling the tics and learning difficulties would magically disappear and my son would thrive. He has thrived but Tourette's and learning disorders do not magically go away. It was a realization that I couldn't fix him...we thought he needed fixing as the public school led us to believe. Tourette's is not the swearing, head turning disorder that is characterized on TV. Some days, you can't tell Patrick has Tourette's, other days you wonder how he makes it thru the day with so many tics and vocal phrasing. Sometimes the spontaneous utterances make us laugh. Like when he shouts out, "I like pants."
So here is Patrick's story-as seen by his mom. Some of you have read parts of this before. It bears repeating. It is an important story. It is all the guts and glory that this magnificant child is.
Twitch and Shout
Turkey gobbles, flapping arms, monkey calls and foghorns. It’s not a place at the beach or on a farm. It’s not anywhere but my twelve year old son’s brain.
Six years ago, at the age of 6, Patrick was diagnosed with Tourette Syndrome, a Neurological disorder characterized by both vocal and motor tics. On a day to day basis we are never sure whether we will see hand licking, neck straining, monkey calls, whoops, hopping or just facial grimacing. The symptoms are wide and varied and it is important to remember that all of this is taking place in a child with above average intelligence.
Larry and I were familiar with Tourette's as a few family members were diagnosed with the disorder. However, what we had was no idea about the long and arduous journey before us. We had no idea about the learning disabilities that are associated with this disorder and while not every child has all of the co-morbidities associated with Tourettes, every Tourette’s child has at least one.
In the coming years, we heard terms like Visual-Motor Integration Disorder, Attention Deficit Hyperactivity Disorder, Dyslexic tendencies, poor memory recall, Dysgraphia, Executive Dysfunction and age seven, Patrick was also diagnosed with a seizure disorder.
I have been a Neurosurgical ICU nurse for many years and you would think that I would have a great understanding of these terms, but quite frankly, my husband and I were blindsided. Our son was incredibly intelligent, how could he possibly have all of these issues? The diagnosis and labels that were placed on him seemed incredibly cruel and not at all befitting to the child we knew.
Larry and I spent our allotted thirty seconds in denial and faced the reality that Patrick could not do this alone and it was up to us, as his Parents, to get him everything he needed to be a successful part of life.
The coming months seemed to blur into one large test. It tested our skills and commitment as parents and tested Patrick’s reserve to cope with an onslaught of assessments. We tried five different medications to help with the ADHD, focusing issues, control of his tics, and worsening seizure disorder. The side effects were many and Patrick was left with anger outbursts, crying spells, nausea, extreme tiredness and just a general feeling of not being himself. Many nights, I shared in those tears that he refused to show.
But these things are not who Patrick is. Patrick is a smart, lively, loving, humorous and the most empathetic child I’ve ever met. He has a strength that I’ve never seen in another human being. He notices small details in the world that others would miss, like the gold flecks in his friend Victoria’s eyes. He has never been cruel to another child as his heart has felt that pain.
There is no other word to describe this disorder but ridiculous. That’s it. It is a disorder that as soon as you figure it out-the symptoms change. The tics change and morph and what worked for you yesterday does not work today.
When it became apparent that Patrick was struggling with his class work in public school, we approached the school and asked for an evaluation. Patrick was tested by Educational Specialists, school Psychologists, Occupational Therapists and we met with the team afterward to discuss his “problems”. Patrick passed all of the tests with above average intelligence despite severe deficits in many areas. We were told that he does not qualify for any services because of his “cumulative” scores. We needed a diagnosis written on paper for him to qualify for services. The more diagnosis he had, the more help he could get.
The next nine months are spent fighting for services with the Special Education Department in my son’s school until he is finally deemed eligible for services. The school offered him minimal assistance, mostly a behavior plan, but at the time being new to the system, we didn’t know better. We agreed to the plan but questioned how a behavior plan could help a child who had no control over his behavior.
We assumed the school would make available exactly what he needed and provide ongoing assessment and adjustment of his Individualized Education Plan or IEP. The IEP is the paper they give you after services are awarded that tells you everything your child can’t do and what they are going to do to help him. It’s also supposed to contain what he can do and has achieved, but we found that information very sparse.
Over the next several years, my husband and I met with Tourettes experts throughout the state. We researched scads of information, devoured and dove into anything that even remotely relates to Patrick’s disorder. We came to understand not only about the disorder but why his brain functions (or doesn’t function) the way it does. We become experts and advocates on all things Tourettes. We learned to interpret the school testing scores and what they mean and are suddenly taken aback at the lack of help he is getting and how poorly he is doing academically.
Patrick had progressed into the fourth grade and settled into the school environment easily for the first time. He was happy and liked school and Larry and I couldn’t have been more pleased. Our elation soon turned to despair once again as more and more of his work received an “A” one day and an “F” the next. Patrick started with his usual mantra of “I don’t like school, I’m bored, I had a terrible day, The teachers don’t understand me, I’m ticcing so bad in school that I can’t focus on what the teacher is saying and when I ask for them to repeat it –they get mad. “
Six years ago, at the age of 6, Patrick was diagnosed with Tourette Syndrome, a Neurological disorder characterized by both vocal and motor tics. On a day to day basis we are never sure whether we will see hand licking, neck straining, monkey calls, whoops, hopping or just facial grimacing. The symptoms are wide and varied and it is important to remember that all of this is taking place in a child with above average intelligence.
Larry and I were familiar with Tourette's as a few family members were diagnosed with the disorder. However, what we had was no idea about the long and arduous journey before us. We had no idea about the learning disabilities that are associated with this disorder and while not every child has all of the co-morbidities associated with Tourettes, every Tourette’s child has at least one.
In the coming years, we heard terms like Visual-Motor Integration Disorder, Attention Deficit Hyperactivity Disorder, Dyslexic tendencies, poor memory recall, Dysgraphia, Executive Dysfunction and age seven, Patrick was also diagnosed with a seizure disorder.
I have been a Neurosurgical ICU nurse for many years and you would think that I would have a great understanding of these terms, but quite frankly, my husband and I were blindsided. Our son was incredibly intelligent, how could he possibly have all of these issues? The diagnosis and labels that were placed on him seemed incredibly cruel and not at all befitting to the child we knew.
Larry and I spent our allotted thirty seconds in denial and faced the reality that Patrick could not do this alone and it was up to us, as his Parents, to get him everything he needed to be a successful part of life.
The coming months seemed to blur into one large test. It tested our skills and commitment as parents and tested Patrick’s reserve to cope with an onslaught of assessments. We tried five different medications to help with the ADHD, focusing issues, control of his tics, and worsening seizure disorder. The side effects were many and Patrick was left with anger outbursts, crying spells, nausea, extreme tiredness and just a general feeling of not being himself. Many nights, I shared in those tears that he refused to show.
But these things are not who Patrick is. Patrick is a smart, lively, loving, humorous and the most empathetic child I’ve ever met. He has a strength that I’ve never seen in another human being. He notices small details in the world that others would miss, like the gold flecks in his friend Victoria’s eyes. He has never been cruel to another child as his heart has felt that pain.
There is no other word to describe this disorder but ridiculous. That’s it. It is a disorder that as soon as you figure it out-the symptoms change. The tics change and morph and what worked for you yesterday does not work today.
When it became apparent that Patrick was struggling with his class work in public school, we approached the school and asked for an evaluation. Patrick was tested by Educational Specialists, school Psychologists, Occupational Therapists and we met with the team afterward to discuss his “problems”. Patrick passed all of the tests with above average intelligence despite severe deficits in many areas. We were told that he does not qualify for any services because of his “cumulative” scores. We needed a diagnosis written on paper for him to qualify for services. The more diagnosis he had, the more help he could get.
The next nine months are spent fighting for services with the Special Education Department in my son’s school until he is finally deemed eligible for services. The school offered him minimal assistance, mostly a behavior plan, but at the time being new to the system, we didn’t know better. We agreed to the plan but questioned how a behavior plan could help a child who had no control over his behavior.
We assumed the school would make available exactly what he needed and provide ongoing assessment and adjustment of his Individualized Education Plan or IEP. The IEP is the paper they give you after services are awarded that tells you everything your child can’t do and what they are going to do to help him. It’s also supposed to contain what he can do and has achieved, but we found that information very sparse.
Over the next several years, my husband and I met with Tourettes experts throughout the state. We researched scads of information, devoured and dove into anything that even remotely relates to Patrick’s disorder. We came to understand not only about the disorder but why his brain functions (or doesn’t function) the way it does. We become experts and advocates on all things Tourettes. We learned to interpret the school testing scores and what they mean and are suddenly taken aback at the lack of help he is getting and how poorly he is doing academically.
Patrick had progressed into the fourth grade and settled into the school environment easily for the first time. He was happy and liked school and Larry and I couldn’t have been more pleased. Our elation soon turned to despair once again as more and more of his work received an “A” one day and an “F” the next. Patrick started with his usual mantra of “I don’t like school, I’m bored, I had a terrible day, The teachers don’t understand me, I’m ticcing so bad in school that I can’t focus on what the teacher is saying and when I ask for them to repeat it –they get mad. “
Larry and I have knots in our stomachs on a daily basis. Homework is a nightmare and rarely finished. Patrick would spend all day trying to suppress his tics and then come home only to explode for 3 hours straight of non-stop ticcing. His brain is exhausted from trying to concentrate, his muscle strength depleted from a body that is in constant motion. He is physically, emotionally and mentally exhausted, as are we.
His work and testing output had always been variable but he has not yet learned his multiplication facts, cannot “see” punctuation because of the visual processing disorder and is missing huge chunks of basic learning that the teachers and team seemed to either overlook or miss in the past few years. We stress to the team that despite high intelligence on his initial testing, his grades do not reflect his knowledge. Multiplication signs and addition signs look the same to him because of the dyslexia. Larry and I highlight the multiplication signs pink and the addition signs blue so that he can differentiate between the two. His teacher sends all of his work home for me to recopy and highlight instead of making the accommodation within the school.
We requested another IEP review meeting where we provided the school with three pages of modifications recommended by Patrick’s Doctors and gave them an index titled, “Modifications for the Child with Tourette Syndrome and ADHD” all 432 pages of it. We also supplied them with information on the free seminars that TSA provides to schools and the Medical/Allied Professionals within the community.
Larry and I are hesitant but pleased at the conclusion of the meeting. The team seemed receptive and assured us that the IEP would be rewritten. Indeed it was, but missing is the vast details of exactly how they are going to teach him and measure his progress on a daily basis.
Our anger cannot be measured and inside we are silently screaming. Larry and I sat in our family room that night….mostly silent, our words exhausted, not knowing where to turn.
We decided to call for a Mediator from the State Department of Education. Someone to help us, help the school understand about our son and develop an appropriate IEP. The school agreed to most of the modifications although they can’t understand why we chose mediation and they are defensive and confrontational during the meeting, as are we. They ask us what they are supposed to do with our child yet they offer no assistance in alternate programs to help Patrick learn. They have not contacted the TSA group, Patrick’s doctors, other school systems, an LD gifted instructor or other educators to find a program that will work for him.
Larry and I asked that Patrick be allowed to retest when it is apparent that he knows the material and poor grades are achieved. We are told it puts him at an unfair advantage over the other students. We also asked for an alternate grading method and were told “Well, He’s getting C’s, it’s not like he’s failing.”
We are told that sometimes it is best to leave the teaching up to the professionals who see our child six hours a day and know him best. We are told that including that much detail on an IEP is cumbersome and that the modifications that are already on the IEP are “umbrella statements” and cover a lot of things.
We tried to explain why timed testing is never a good idea for the child with Dysgraphia and poor memory recall. We are told that the other students will notice if Patrick is still working when the test is over. Consistently we are told that he will bring down the state average on NECAP testing. Indeed he does. Patrick failed both the Math and Reading section of state testing despite reading at an eighth grade level. During the meeting, we hear things like “We don’t want Patrick to become enabled by the modifications.”
“I do !” I scream at them. “I want my child to be enabled to do the things that other kids do with whatever he needs to accomplish it. I want to enable him to succeed in a way that works for him. It is our job as parents to enable our children, to equip them with skills and help and confidence to succeed in the world. Yes, I want to enable him.”
The burden of finding what learning method will work for our child is placed in our hands. From the comments in the room that day we realize that they do not understand Tourettes and it’s co-morbidities despite the vast amounts of information that was given to them. They do not understand my child.
Larry and I left the meeting quite somber and realized that we are no longer advocating for our son and his needs but are now left defending him and how he learns. We have been to 18 different meetings with the school and are still no closer to getting him what he needs. I stood in the parking lot of the school that day sobbing, as Larry tried to find words to comfort me. All he could do is was hold me until I stopped shaking.
That night we are once again enveloped in silence not even knowing where to begin this all too familiar conversation. We don’t talk about the meeting for many days. Patrick brings his work home from school and while he is not looking I throw it all out. The teacher places big red comments on the paper like, “Parent signature needed,” and “Were you listening today?” The red marks have taken over his learning and it is a poor reflection of what he knows. Even the papers that require a parent signature for failing grades get tossed. Our relationship with the school, SPED team, and teachers is now nonexistent. Looking back on what we went through, this was the turning point for our family. We were slowly shedding the public school from our life one paper at a time.
We knew that there had to be a better way for our family but we also knew we were in a precarious position. Both of my parents had passed away in a short eighteen month time frame, Patrick’s seizure disorder was worsening, my daughter survived three years in Patrick’s shadow of issues, and we had just learned that we were going to be parents again with the pending adoption of our third child.
I wanted my family back and the only decision left to make would be when we
would start to home educate our children, all of our children. Our family had been torn apart by the school system. They questioned our parenting, claimed to know our child better than we did as parents and treated our son as a diagnosis.
There was an overwhelming sense of peace after we decided to homeschool. I was scared to death to homeschool but more scared of what would happen to my child if left in the public school system. It is a decision that we waited far too long to make. Are we taking the easy way out by not holding the public school accountable? We don’t think so. We hold them accountable every day our child succeeds at home. Our path to homeschooling was not our first choice. We came here out of disappointment, we stay here for love. Our family has grown closer and my daughter no longer lives in the shadow of Patrick’s disorder. They are siblings and best friends because his issues do not matter at home.
Where are we today-nearly 4 years later? Patrick is now at grade level in Math and is a full grade ahead in most other subjects. Math still presents great difficulty for him because of his poor memory recall. Some days-we just have to put it away and try another day. He is finishing 7th grade and still struggles with his multiplication facts but he is learning them. He struggles with Math and some days can’t remember what he learned the day before and we must review everything all over again.
His work and testing output had always been variable but he has not yet learned his multiplication facts, cannot “see” punctuation because of the visual processing disorder and is missing huge chunks of basic learning that the teachers and team seemed to either overlook or miss in the past few years. We stress to the team that despite high intelligence on his initial testing, his grades do not reflect his knowledge. Multiplication signs and addition signs look the same to him because of the dyslexia. Larry and I highlight the multiplication signs pink and the addition signs blue so that he can differentiate between the two. His teacher sends all of his work home for me to recopy and highlight instead of making the accommodation within the school.
We requested another IEP review meeting where we provided the school with three pages of modifications recommended by Patrick’s Doctors and gave them an index titled, “Modifications for the Child with Tourette Syndrome and ADHD” all 432 pages of it. We also supplied them with information on the free seminars that TSA provides to schools and the Medical/Allied Professionals within the community.
Larry and I are hesitant but pleased at the conclusion of the meeting. The team seemed receptive and assured us that the IEP would be rewritten. Indeed it was, but missing is the vast details of exactly how they are going to teach him and measure his progress on a daily basis.
Our anger cannot be measured and inside we are silently screaming. Larry and I sat in our family room that night….mostly silent, our words exhausted, not knowing where to turn.
We decided to call for a Mediator from the State Department of Education. Someone to help us, help the school understand about our son and develop an appropriate IEP. The school agreed to most of the modifications although they can’t understand why we chose mediation and they are defensive and confrontational during the meeting, as are we. They ask us what they are supposed to do with our child yet they offer no assistance in alternate programs to help Patrick learn. They have not contacted the TSA group, Patrick’s doctors, other school systems, an LD gifted instructor or other educators to find a program that will work for him.
Larry and I asked that Patrick be allowed to retest when it is apparent that he knows the material and poor grades are achieved. We are told it puts him at an unfair advantage over the other students. We also asked for an alternate grading method and were told “Well, He’s getting C’s, it’s not like he’s failing.”
We are told that sometimes it is best to leave the teaching up to the professionals who see our child six hours a day and know him best. We are told that including that much detail on an IEP is cumbersome and that the modifications that are already on the IEP are “umbrella statements” and cover a lot of things.
We tried to explain why timed testing is never a good idea for the child with Dysgraphia and poor memory recall. We are told that the other students will notice if Patrick is still working when the test is over. Consistently we are told that he will bring down the state average on NECAP testing. Indeed he does. Patrick failed both the Math and Reading section of state testing despite reading at an eighth grade level. During the meeting, we hear things like “We don’t want Patrick to become enabled by the modifications.”
“I do !” I scream at them. “I want my child to be enabled to do the things that other kids do with whatever he needs to accomplish it. I want to enable him to succeed in a way that works for him. It is our job as parents to enable our children, to equip them with skills and help and confidence to succeed in the world. Yes, I want to enable him.”
The burden of finding what learning method will work for our child is placed in our hands. From the comments in the room that day we realize that they do not understand Tourettes and it’s co-morbidities despite the vast amounts of information that was given to them. They do not understand my child.
Larry and I left the meeting quite somber and realized that we are no longer advocating for our son and his needs but are now left defending him and how he learns. We have been to 18 different meetings with the school and are still no closer to getting him what he needs. I stood in the parking lot of the school that day sobbing, as Larry tried to find words to comfort me. All he could do is was hold me until I stopped shaking.
That night we are once again enveloped in silence not even knowing where to begin this all too familiar conversation. We don’t talk about the meeting for many days. Patrick brings his work home from school and while he is not looking I throw it all out. The teacher places big red comments on the paper like, “Parent signature needed,” and “Were you listening today?” The red marks have taken over his learning and it is a poor reflection of what he knows. Even the papers that require a parent signature for failing grades get tossed. Our relationship with the school, SPED team, and teachers is now nonexistent. Looking back on what we went through, this was the turning point for our family. We were slowly shedding the public school from our life one paper at a time.
We knew that there had to be a better way for our family but we also knew we were in a precarious position. Both of my parents had passed away in a short eighteen month time frame, Patrick’s seizure disorder was worsening, my daughter survived three years in Patrick’s shadow of issues, and we had just learned that we were going to be parents again with the pending adoption of our third child.
I wanted my family back and the only decision left to make would be when we
would start to home educate our children, all of our children. Our family had been torn apart by the school system. They questioned our parenting, claimed to know our child better than we did as parents and treated our son as a diagnosis.
There was an overwhelming sense of peace after we decided to homeschool. I was scared to death to homeschool but more scared of what would happen to my child if left in the public school system. It is a decision that we waited far too long to make. Are we taking the easy way out by not holding the public school accountable? We don’t think so. We hold them accountable every day our child succeeds at home. Our path to homeschooling was not our first choice. We came here out of disappointment, we stay here for love. Our family has grown closer and my daughter no longer lives in the shadow of Patrick’s disorder. They are siblings and best friends because his issues do not matter at home.
Where are we today-nearly 4 years later? Patrick is now at grade level in Math and is a full grade ahead in most other subjects. Math still presents great difficulty for him because of his poor memory recall. Some days-we just have to put it away and try another day. He is finishing 7th grade and still struggles with his multiplication facts but he is learning them. He struggles with Math and some days can’t remember what he learned the day before and we must review everything all over again.
The Sciences facinate Patrick and he works at a high school level. Grammar is still difficult because of the visual processing portion. He can't "see" punctuation and his writing is often one long run on sentence. The computer and spellcheck has mostly solved that problem. He devours books and reads everything in sight. Perhaps that is where he gains his vast knowledge on so many things.
He is thriving and loving learning again. Mostly, he has learned to like himself and trust his own learning. His tics have diminished greatly because the anxiety of performing has been removed. Other days, the tics are quite bad and accomplishing anything is a feat in itself. It certainly hasn’t all been easy. The challenges don’t disappear when you decide to Homeschool but they are more manageable and you find creative ways of dealing with what doesn't work.
I do worry about what the future will bring for him. It may take him longer to accomplish his goals. It may not. I question if I am doing enough for him to help him thrive and survive in this world. Only time will tell. But at least we will be on the journey together.
I do worry about what the future will bring for him. It may take him longer to accomplish his goals. It may not. I question if I am doing enough for him to help him thrive and survive in this world. Only time will tell. But at least we will be on the journey together.
9 comments:
It's sad the schools don't really help. You are doing an amazing job, because you care. And I'm sure he's going to be so much better off. But I know it's hard. I have a brother with learning disabilities, and my mother always struggled with the worry that she wasn't doing well enough with him. He has different goals than he would otherwise, but he can accomplish his goals.
Anyway, I just wanted to say - Good job!
thanks so much.
Bev
Hi Bev
Thank you so much for sharing your personal story. I relate to a lot of what you had to share. Just for background. I'm a single mother and I have an almost 8 yr old daughter with Autism. She has been home schooled now for almost 3 years, this year she attends 3 hours broken up. Next year we may have to go back to full time home schooling (not a bad thing in reality)
I hope to meet you in the future. Our schedule hasn't allowed us to come to the Meeting house YET.
ps.. love this blog
thanks Maria!
Thank you for sharing your story.
Did it feel good to write it all out?
Writing is so cathartic to me.
I wonder if Patrick feels like dictating it or writing it down.
It it very cathartic but I still hold a lot of anger at how we were all treated. I'm trying to get past that but the hurt is deep. Patrick kept a journal for a while but as he approaches the teen years he just wants to be "normal" and hang out with friends and just live life as best he can. He is doing well.
Bev
I am glad you shared these details--what a lovely, honest post.
You are right, many public schools do not/will not/can not provide the services necessary for every student. I saw that a lot when I was in graduate school-but, I also saw a lot of teachers who wanted to help (they were unfortunately hindered by their district's resources).
Sad. Isn't it?
Great post...from a great Mama. :)
Thank you Jessica,
There are a lot of great teachers out there. Patrick had a few who basically told me their hands were tied. A few were green and backed down at meetings, some spoke up but didn't get anywhere. I just found it so disheartening that parents weren't considered parteners in their child's education.
Bev
Bev,
You are an amazing person and Patrick is truly an awesome kid. Thank-you so much for speaking up for kids with learning differences and Tourettes specifically. Being a parent of these kids is rewarding but some days just plan hard. We had very brief preschool experience with the public school system (it involved lawyers....yes we were those parents too) because I saw the public school system fail my brother so miserably that I was biased against them years before I had children. I can tell you that many private schools do no better. We sat in hours and hours of meetings with people we payed tens of thousands of dollars to educate our children begging them.....to educate our children! We had hours of meetings, tons of tears, and heard many of the things you heard from the public school. For me other than my kids having lost those years and the anger of being made to feel so powerless, needy, and stupid by the school the thing that bothers me the most is when other people say I have given the schools a pass by homeschooling my children. The implication that I should have stayed and fought for all children and sacrificed what was best for my kids...I find this is said most often from parents of able children. You put up a good fight homeschooling for many is not an easy choice but you are doing a great job.
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