Sep 22, 01:33 PM
You could help someone with Tourette Syndrome by passing this on! (NOT a plea for a donation of any kind)
Posted by Cheryl Walker under Special-Family-articleAs a parent of a now-grown child with ‘Tourette Syndrome +’ (Tourette Syndrome plus related disorders such as OCD and/or Autism), a past Coordinator of a local Tourette Syndrome support group, and current peer-supporter for the Parent-to-Parent network, I am contacted for advice and support for families with a family member diagnosed with Tourette Syndrome. A therapist contacted me yesterday looking for help for such a family. Besides a doctor recommendation, I gave him eleven items I always tell a parent who contacts me.
It occurred to me that someone reading this might know of someone who would also benefit from the information. Please copy & paste and send on, and tell them to contact me if they need more help.
1. I know that your child getting a diagnosis of Tourette Syndrome is daunting, frightening, and sometimes soul-crushing. But it is not a fatal disease, there are other diseases much worse that your child could have instead, and it should not stop your child from doing whatever they want to do in life.
2. Expect that the reactions from extended family members may be hurtful to you (i.e. “They are twitching because they are stressed from you being too hard on them”), so be prepared for it. You MUST be knowledgeable not only about Tourette Syndrome (as it is a commonly misunderstood and misdiagnosed disorder), but the disorders that many times accompany it (such as Obsessive-Compulsive Disorder). Read, go online, and soak up everything you can about TS. Extended family members are well-meaning and think they are offering you good advice, but you must trust your own knowledge, and the knowledge of the team of professionals you surround yourself with.
3. In your own family everyone may react differently to the diagnosis. In my experience Moms are usually the ones to see the symptoms first, and the ones who work to get the diagnosis. Dads are harder to come along with everything. Some choose to deny the diagnosis in an angry way, some don’t want to deal with the diagnosis and leave all of the work involved to their wives, some are just lost and confused… or any combination thereof. Keeping a good marriage going while dealing with the diagnosis and all that comes with it is difficult. Take it easy on yourselves and each other. Obviously siblings must not get lost in the chaos either.
4. I am always up front about the lack of knowledge of TS in medical professionals of all kinds (doctors, dentists, MH professionals, etc) We travel the length of our state to get care for our son (besides the Tourette, my son has Asperger’s and Panic Attacks, among other disorders, and I could not find adequate care for him in our area). As parents we must learn everything we can, network with other parents, and many times educate the mental health/school professionals about TS. We must think to do things many other families don’t have to (i.e. calling ahead to our chosen dentist, to apprise him or her about our child’s condition, and among other things the possibility they might not be able to sit still for a jaw x-ray)
5. Parents must become knowledgeable of school policies, and the laws and regulations about special ed students. One of the best resources I had during Josh’s school years was a Child Advocate. They know the special ed laws in & out, they have working relationships with the schools in their county, and are able to bring respect to a parent during daunting school meetings. Whether or not your TS child is doing well in school, you should still have a relationship going with a Child Advocate, so when things get rough, they are familiar with you and your child and can get you help swiftly. They can be found in each county’s Mental Health Assn., or the county’s base service unit; or they can direct you where to find one in your county. Important decisions must be made concerning school placement, whether aides need to be available, whether homework needs to come home (in Josh’s case, he did all of his homework at school so he could completely unwind at home), or whether an option such as Cyber School needs considered.
6. Avoid getting caught with the invariable questions from teachers and others, when discussing inappropriate behaviors, about where the TS tic ends and just a plain bad behavior begins. There is no way to adequately answer this, so it is just frustrating futility to go down that road. If a behavior plan is created right, it will clearly define for everyone the expectations and responsibilities of the TS child. To argue in a school meeting about whether or not Johnny failed to complete a task in class that he was expected to was because of his ticcing, his reaction to his new medication, or just because he was bad is such a waste of time. The same can be said for the home setting. Again, keep the Big Picture in mind… just drive through the potholes and just keep moving.
7. In whatever public setting your TS child is part of (church, Boy Scouts, family parties, school, bus rides to & from school, etc) the participants need to receive information about TS either from an in-service type of thing, or you yourself explaining the situation. To wait to do so is a mistake. The things people make up in their mind when first confronted by the tics are so much worse than the reality. If they are told ahead of time what they are seeing, and why it is happening, they can skip over the shock-like reactions that breed name-calling, social avoidance, and other forms of ostracism. Don’t listen to the teachers, friends, and other well-meaning folks that advise you not to say anything ahead of time. I learned the hard way that is NOT the right way to handle it. I always carried TS pamphlets with me… as an example of their helpfulness is when Joshua had to go for weekly allergy injections. While waiting in the exam room following the shot, the room would be filled with people. He would try not to tic, but then, of course, he would, and after getting attention for it, would get nervous and then tic like crazy. I asked the doctor if I could leave a small stack of pamphlets about TS in the office, and it helped a lot. When Josh was particularly ticcy, I would straighten up the stack deliberately, so as to bring attention to it. That, and the big button on my purse reading, ‘Ask Me About Tourette Syndrome’, proved very helpful.
8. As TS kids have many monkeys on their backs during a school day (i.e. trying to suppress tics; trying to keep their OCD rituals and thoughts at bay; etc) their mood can be extremely negative or even violent once at home. Sometimes Moms are frazzled by this. I explain that the child is only comfortable with a few select people, one usually being their Mom, so that is who the frustrations get vented on. Extreme patience must be employed, and the ‘Big Picture’ always needs to be in view. These Moms need respite whenever it is possibly provided by other family members, friends, or others knowledgeable about TS behaviors. A Mom can’t relax if her TS child is being watched by a ‘normal’ babysitter. Trust me.
9. Become members of the National TS Assn (http://www.tsa-usa.org). Go to the conferences whenever you possibly can. The more you realize you are amongst many many other people dealing with TS the better you will feel. The national conference is an awesome experience. I highly recommend it to anyone with an interest in TS.
10. Decisions must be made about what type of therapy, medications, etc. are appropriate for your child. Perhaps Family-based or WrapAround Services would benefit your child. They are intrusive, but sometimes make all the difference in the world. Perhaps a TSS needs to not only be with your child at home, but accompany them to school. These are decisions not made easily, and, again, this is when you rely on your own knowledge of your child, your understanding of TS, and the advice of your trusted team.
11. Tell your TS child how much you love them often. The world can be a cold and formidable place to a person who, other than strange movements and sounds, looks otherwise normal. The lack of an obvious disability (such as a missing limb for example) makes it even harder for the average person to understand the physical and verbal ticcing… there is a ‘sympathy factor’ lacking from being otherwise normal looking. Tell them they are terrific, because they are.
Commercial breakdown, driver focus, and links related to the 2009 Sylvania 300 Commercial breakdown, driver focus, and links related to the 2009 AAA 400
Oct 15, 11:44 AM
This story has to do with a little boy – and the fact that the American Disability Act laws and IDEA laws did not protect him. He has been emotionally abused, humiliated, made to have low self esteem, made to feel ashamed of his disability, wishing he was dead, and denied his right to a free and public education. This all happened over a two year period (kindergarten and first grade) all because of ONE man (the superintendent) running the show, including the school board. All because of this man’s lies to the teachers, to the school board, to the deputy investigating, and to state agencies investigating. He also made a fraudulent report to show to school board members so they would believe him and to cover up his lies. Why did he do all of this? Because of his hatred towards me (this little boy’s mother) it comes down to conspiracy. I was a school board member for three years and I am not a yes person, we did not get along then, then when I stood up for my son in Kindergarten, the superintendent hated me more. No one stands up to him. The superintendent is a coach and does not like to have people stand up to him, he is an intimidator (teacher’s use to come to me when I was a board member because they were afraid to go to him) and he wants to be the winner no matter the cost (in this case it has cost a little boy’s mental and educational well being) It sounds far fetched and hard to believe but it is all documented in reports and paperwork. My son has Tourettes, anxiety disorder, sensory disorder, OCD, and ADHD. The part that the superintendent has covered up is everything except the ADHD. You see this is the only thing that the superintendent told the school board my son is diagnosed with, he flat out lied when asked about tics. He told the board that there has never been any mention of tics or Tourettes on any reports, that the only thing in the report was ADHD. Children’s Mercy in Kansas City diagnosed my son in August 2007 with tic disorder, as well as anxiety disorder and the ADHD caused from the tic disorder and said my son needed to monitored for one year and then it could be changed to Tourettes, the school has had this report since September 2007. A psychiatrist monitored my son and changed his diagnosis to Tourettes disorder; the school received a fax on the diagnosis in September or October 2008. (I have the special ed director speaking on a recorder at an IEP meeting in October 2008 stating that she received a one page fax with the Tourettes diagnosis) they knew they were being recorded. Yet when asked by the sheriff’s office for an investigation the superintendent and special ed director denied having any diagnosis. I will backtrack a little now to kindergarten 2007/2008, my son was the first diagnosed case with tic disorder or Tourettes that our school has ever had. The school put my son in a closet with bars for 12 to 14 days because of his noises. When I found our about it I told them not to put him in there anymore. We had parent teacher conferences and the teacher and principal told me that Children’s Mercy was wrong and that my son could control his behaviors. I asked how often he made noises and the teacher said about every 40 minutes to 2 hours (not much). The teacher had never even notified of his noises. We then had our second IEP meeting and the superintendent said “Don’t you think he can control it when he makes noises?” They didn’t get it; so that year we spent about $8000 on attorney fees.
We finally filed due process because every time they would agree to something in a meeting they would not follow through with it. Halfway through due process our attorney dropped us (we think it was because she was scared to go up against the school’s attorney, like many other attorneys and advocacy groups). We had a pre-hearing meeting at the school without an attorney because we could not find anyone to take the case, I was out of money and some said we would never win against their attorney. At this meeting (it was suppose to be a pre-hearing meeting to set everything up)the state hearing officer tried to bully us into settling, she was very biased for the school; it was obvious she had talked to the school’s attorney outside this meeting. She never talked about getting a witness list or evidence; it is written in IDEA part B that this is what should happen at this meeting. We filed a complaint about her with Missouri department education (Dese), we asked for a new hearing officer. The hearing officer said she had never talked to him outside a meeting and she also said that she did not request this meeting in person. I have an email that she wrote to our previous attorney and the state hearing officer is the one that asked for the meeting in person (usually this could be done on the phone, so we didn’t understand why she wanted it in person. When we got to the meeting we understood why it was in person – she was there to get us to sign a settlement agreement and was not there to set up due process hearing.) Dese did not care about this evidence, they would not appoint a new hearing officer so we knew then that we would never win due process without an attorney and we had to drop the due process. I then filed a child complaint with Dese on the seclusion room and the school lied and told Dese that this room was used for all children (yet in another in investigation from Department of Social Services OHI division) on a different student they told that department that the seclusion room was built and used only for my son) the superintendent even told the school board that the room was only for my son. Dese found in favor of the school because of what they told them about the room being for everyone. I went to a state rep and he put me in contact with a supervisor at Dese, I drove to Jefferson City with 2 school board members and all my paperwork. This supervisor told me a lot of people call and say they have evidence when they really don’t and that I was the first person to ever actually have evidence to prove what I said was true, however; she said you cannot appeal a Dese decision, it is final – so there was nothing I could do. Next, came first grade. In our son’s IEP (our previous attorney helped with the IEP at an IEP meeting we had at the end of kindergarten, before she dropped us.) My son along with his Para would be in the special ed room by themselves with the special ed teacher and my son would have special classes such as P.E., art, music, lunch and recess with his classmates. We wanted this because the 1st grade teacher had a history for abusing kids with problems. Example: making students wear signs saying I’m bad and walking up and down the hall. She taped a girl’s mouth shut. One little girl has documented – Post traumatic stress syndrome caused from this teacher) This arrangement worked great, my son got caught up on his grade level and did wonderful – no problems and on no medicine. We had an IEP meeting then in October 2008 and we all agreed to put my son into the regular classroom with his Para, we were assured the teacher would follow the IEP. Any noises or tics were to be ignored (called planned ignoring) the teacher was in this meeting and said she wanted to do what was right and this is also where the special ed director said she received a fax from the psychiatrist on my son’s diagnosis change to Tourettes syndrome. We noticed changes pretty quickly, his tics were worse in the afternoons. So my husband called the Para at home and he said everything was fine. In November our son started having a few nightmares and wetting the bed every once in a while. We put our son back on medicine so he could handle the classroom. In December one day my son came home all upset saying that his teacher told him she didn’t believe in Tourettes. I called and questioned the special ed director, she called back saying it was a big misunderstanding. The same day the nurse called and said my son had welts all over his back, so I picked him up and he was extremely quiet. I took him to our family Dr. immediately. It took her 30 minutes to get it out of him about his teacher not believing in Tourettes. He said they told him to say she didn’t say it, but he told us that she did say it. The welts were hives from nerves. We then had winter break and then when he went back in January things got much worse. More nightmares, more bed wetting and horrible tics when he got off the bus in the afternoons. We received his report card and he had dropped his retell on a book to about half of what it was. We called for an IEP meeting and we had a meeting February 5th 2009. We took our son’s regional center caseworker with us. At this meeting the school said everything was fine they had noticed NO tics. We asked that our son go back to the special ed room, the school said no. They wanted some more evaluations done on our son. They said he was benefiting from being in the classroom. Our son’s caseworker said she had never seen a meeting so well rehearsed in her life, everyone in the room knew exactly what to say or not to say. So at our meeting we got nowhere, the school wouldn’t even listen even when showed how his school work or writing had gotten worse. The very next day February 6, 2009 when my son arrived home from school and got off the bus I checked his backpack. You see we had journal that we wrote back and forth to the teacher or the Para and they wrote notes to us. This journal was in there but there was also another notebook we had never seen before. On the front of it had our Para’s name, it was his personal notebook, we figured he wanted us to read it. We had no idea what we were about to read. In this journal documented with dates and even the time of day starting from the end of October. In this journal on day after day the Para states that the teacher told my son to “be quiet” or to “be appropriate.” “Stop making those noises, is anyone else doing that? Answer me.” On one occasion it states that she told him 3 times to be quiet and then went over to him twice in person to tell him to be quiet. She had him say he was sorry to the class because of his noises, which is like apologizing for his disability. It was clearly stated you could see he had tics constantly yet they stated he in the IEP meeting he exhibited no tics. He went to the nurse just about every day or every other day, it was clear when I read the journal that this was his way to escape the anxiety and pressure of this teacher. Our son was always saying he’s stupid, he wishes he was dead, he wishes he didn’t have Tourettes, Why don’t my teacher believe in Tourettes – maybe I don’t know if I believe in it either because my teachers don’t believe it. After reading the journal we finally knew why our son was feeling like he was, it was a sickening feeling. We called the liaison that was at the meeting to tell him about the journal and left a message, and then we called the special ed director. She called us back on speaker phone with the special ed teacher, the Para, and the superintendent present. We said we wanted our son out of this teacher’s room immediately. They would do nothing. So we kept our son home. The school would send his work home; we would help him with it (I scribed, which he was allowed in his IEP) he had terrible tics while doing his work and would say I’m stupid or I’m dumb, or I can’t write good (he thought his letters needed to be perfect because the teacher criticized his writing, which I have documentation). I called the children’s abuse hotline and turned it in, they decided after a couple of weeks to investigate for emotional abuse, this was through OHI. I also called the school abuse hotline and they took the call and were having the sheriff’s office investigate for emotional abuse. I filed with Office of Civil Rights, when they called I had already taken my son out of school. They told me that even though it is a violation they could do nothing because my son was no longer in the school and if I proceeded with the complaint it would look like they found in the school’s favor so they said I could drop it so it wouldn’t look like that and that they couldn’t help me. So, I had to drop it. I also filed a child complaint with Dese that the school broke our son’s IEP. One worker at Dese assigned to the complaint was not going to take the complaint (they are there for the schools and not the parents)I called the attorney general’s office and my mother contacted the governor’s office, these offices called Dese and then Dese decided they would take the child complaint and they also recommended we file due process. We requested another IEP meeting. The meeting was held March 6, 2009 and we took three advocacy groups with us. The advocacy groups agreed it would be best for our son to be out of this classroom either in the special ed room, or homebound. At this meeting it was clear from the very beginning the school was upset because I had made complaints to all these agencies and the school was NOT even going to listen to us and they said that he benefited from this teacher and that was final he would be in her room. I said, “How can anyone could put a child back in a room with someone who is being investigated by several agencies for child abuse to him. I would have to be crazy to do that.” The special ed director even stated out loud in front of everyone at this meeting that this was the reason my son was not in the regular first grade classroom the first quarter because we thought the teacher might do this. Even the advocacy groups could not believe that the school wouldn’t do anything. They had their minds made up before we ever went to the meeting. We immediately signed our son out of school permanently.. The school tried to talk us into having the evaluations. They wanted someone to tell them what Quincy’s tics were exactly. They said they didn’t think his noises were tics. Anyone who has been trained knows you cannot tell every single tics because they can have new tics at anytime and lose tics also This teacher was never put on leave while being investigated. The investigation from the deputy started and he came out many times and asked many questions. The school made many false accusations to us like saying that a Dr. at Children’s Mercy said I have Munchausen’s By Proxy Syndrome (where I intentionally hurt my son doubling his medicine causing him to have Tourettes), that we kept our son up all night watching scary movies and wouldn’t let him sleep so he would do poorly on tests. They accused me of stealing the journal. All allegations were found to be untrue by the sheriff’s department. The deputy in charge spent 4 to 6 months investigating, in his investigation he found that this teacher has been abusing children for 20 years that she picked a child out every year and did this to. In the 1990’s the school had to pay out 2 years of attorney fees to someone because of what she did to a child. The investigation also brought out the fact that the school did not properly train the Para. But, the teacher did have Tourettes training and was told by the trainers to ignore all tics and not make children suppress them. It was also found out that the school didn’t believe that my son has Tourettes (I guess they all think they are Dr’s).The school did not want to turn over my son’s records when subpoenaed by the prosecuting attorney. The school’s attorney called him and the prosecutor said they had to turn them over. The school gave them some 5000 copies of things, many duplicates (this was their way of being dirty). My son had to go for a forensic interview and he also went and had trauma evaluation. The psychologist said there was trauma to my son caused by this teacher. He emailed a one page letter that day stating that. He said he would do a full report later (this Dr. is known to take a long time with reports and sometimes even needs subpoenaed). OHI said they would go by the sheriff’s office report, when they received his report they didn’t even use it. They said that my son was wetting the bed in 2007 and still is (my son started wetting the bed after school had started in kindergarten; school had started before we went to children’s mercy, they didn’t put that in the report and they didn’t call to ask me. OHI said that the teacher and the Para both said my son was just like any other student in the classroom, if that is true then why didn’t the teacher treat the other student’s the way she did my son. Did they all have IEPs or did they all have Paras or diagnoses? OHI found my complaint unfounded because the psychologist did not send in his full report (someone should have subpoenaed him for it)they even said the psychologist found trauma. Dese did find the school out of compliance for not following the IEP, they just said the school needed to send a letter saying it would not happen again, the teacher and Para admitted to not following the IEP. The prosecuting attorney has done nothing at this point. When I talked to him last he said that he wanted a meeting (regardless if there were charges or not) with himself, the deputy, me and the school board to tell them everything that had been found. He went on to say that he knew that the administration probably would not want this. Then he told me I need an attorney because there is several civil rights violations and that there is time restraints on some of them. I have literally contacted around 40 attorneys and advocacy groups, unable to find someone to help me. It has been either because I want someone to take it on contingency or because they are afraid of the school’s attorney. My son has been in counseling every week to two weeks since spring. He thinks he is the bad one because he is at home and the teacher’s are still there teaching. Since they do not believe in his Tourettes, he asks Dr’s or counselors or people in general when he meets them “Do you believe in Tourettes?” His self esteem is very low. I can finally get him to do paper school work but it is very difficult. For a long time we had to do a computer program. I have called another school, the tuition is too high. I don’t get it when our school has always just traded students with this other school close by, yet when I called they said they wanted $6000. The truth is they just don’t want my son in the school because they think I am a troublemaker. The special ed director works in all the other schools in our area. A liaison at the governor’s office called Dese compliance department and then Dese called me. I asked that they set up a meeting with the school board, prosecuting attorney, the deputy, and myself and send someone from state level to listen to everything that has been found. I think that this is the only way the school board will listen and the only way to get my son back in school. This past Spring I handed each board member a packet with a letter explaining the situation, some copies out of the journal, Tourettes info and they did nothing. Only 2 board members went to ask to see the state report from an earlier incident with another child and it was a different report than the state had sent out, (A fraudulent one they made up so they wouldn’t be caught). I want my son back in school, he needs friends. I have a disabled husband; I am going to school full time taking my pre-req’s to be a nurse. I come home after school and home school my son. If my son is not in school next year, I may have to drop out of college because I can’t do nursing school and home schooling. I was going to start nursing school this August (I was going to finish my pre-req’s in the summer) and I postponed it a year to try to get this worked out. I was just invited to be in the honor society and I have a 4.0 GPA. I have been asked why we don’t move. My daughter is in 8th grade and has gone to this school all her life, she wants to graduate here – all her friends are here. AND why should we have to move? My son is not the one who did anything wrong he cannot help his disability, he did not ask for it. We like the way we live, we live at a lake, we have a beach, the river is 2 miles away, we 4-wheel, my husband (before his disability) and I worked hard to get what we have and if we give it up we couldn’t afford to go anywhere else and live like we do. My husband became disabled and our income has dropped drastically, I just quit my job so that I could go to college and try to have a better income in a few years. I did nothing wrong, I stood up for my child and if that is wrong then I guess I am guilty. I have fought for him for two years and been through hell, some days it feels like there is not much left of me. My health has failed as well as my husband’s because of the stress. I look at my son and it brings tears to my eyes when I think that he already has learned that life is unfair. A child that age should not know that. When he was three months old he was taken away from his biological parents, he was a failure to thrive baby. We picked him up at 3 months of age and we fostered him until he was 3 ½ years old, then we adopted him and we became a forever family. I will never forget the judge saying to us that even though he didn’t have any problems at that moment that they could appear later and then he asked us if we would still want him if that happened. We answered yes and we meant it. He has come such a long way and he is very loving, funny, and highly intelligent. My son is in 4-H and last year he won clover kid of the year in our county, he did a presentation at the state fair. There was an article in the school paper about my son and his accomplishments. I was told by a board member that the President of the board said that someone with his intelligence and what he has accomplished cannot have a disability. That is the mentality that we are dealing with. The superintendent has said the same thing. It is so sad to see a child hurt so much that they talk about dying at 7 and 8 years old, his emotional scars are deep. About 30% of people who have Tourettes commit suicide, I have no doubt my son will be one of them unless I can get some changes made. No newspaper or tv station has been interested in a story, reporters have told me that readers wouldn’t care because we live too far away, we are not close to a big city. We are a hundred miles from Kansas City or from Des Moines. No one has listened, no one seems to care. People say there are laws to protect him. This is not true; you need money or power to fight a dirty system. The department of education is only there for the schools, they do not want the schools in Missouri to look bad. Advocates can’t do anything when you are fighting a dirty attorney. Politicians are too busy; they don’t want to hear that their system does not work. I am putting a plea out for someone –anyone to help a little boy who thinks that he has been punished because of his disability, that he is so bad that no school wants him. He is not bad but the people who have done damage to him are bad. People have told me this is something that should be on Nancy Grace but we are just little peons in a little rural area that no one has heard of and doesn’t want to. The sad thing is that this is not just a small town problem or just a Missouri problem – this could happen anywhere in the United States to any child with a disability or to any mother or father who decides to fight for their child because that is what they are suppose to do – the right thing to do – A PARENT’S Job – TO PROTECT THEIR CHILD. THE LAWS DO NOT PROTECT THESE KIDS – AND WHEN WE AS PARENTS CANNOT PROTECT THEN WE AS WELL AS SOCIETY HAS FAILED!!!