Accomodations for Tourette Syndrome in School

I have a lot of parents who as me questions about 504 plans and IEPs with the schools.  I thought I would post some information that has been helpful for us, with our boys to see if it would be helpful for others, in asking for accomodations for your children.  It is important to remember that all school districts are different, and sometimes you won't be received well, and sometimes you will.  Not all teachers are going to be on board, with you in the meetings, but in our experience,  MOST will.  Keep an open mind with what you are trying to achieve.

One of the most important things you can do after receiving the diagnosis of Tourette Syndrome, is to request an evaluation from the school.  I have found that not all schools will find there to be a necessity to provide services, for a student with TS.  It is important to remember that what the school sees, is different that what you may observe at home.  We have always expected our kids to behave at school, and they try their best to keep their tics under wraps at school.  However, when they come home it is as if a "Bull ran through the china shop", and everything breaks loose from what the child has been holding in all day to show he is behaving properly.  We call it the Dr. Jekyll, Mr. Hyde syndrome at our house.  I make sure to let the teachers know that that means you are doing your job well at home.  You wouldn't want your child to behave that way at school, and are glad that he has a safe and comfortable place to let it all out,  HOME.  That is where he should let it out.

If you school tests and find your child doesn't meet requirements for a 504 plan,  DO GIVE UP.  Your child can qualify under IDEA law, as Other health impaired.  You can get a letter of diagnosis, from your doctor or neurologist, and that will show that he would qualify for services.  This will at least get the ball rolling. 
One of the best things we did for our boys, was to seek outside testing through a neuro-psychologist, to have a full gammat of test done to determine where there were difficiencies, and where we needed to focus on for learning.  This is call a Neuro-psychological testing.  Here in Ohio,  we have gone up to the Kettering Institute in Dayton Ohio.  It was well worth the drive, we could get in a lot quicker than if we were on the waiting list at Children's hospital.  You should try to get an appointment, but be reasonable and expect to get in for testing in a couple of months.  You can call and see periodically if there are cancellations to see if you can move your appointment up, to try to get in faster.

The reason I say this is a GOLDEN TICKET with school, is because there is no disputing the private and professional opinion from and outside source.  It will be more in depth, and very thorough, the school will have more than enough information to make and assessment, and determine a proper course.  This also show our seriousness of how we are taking the education of our child.  We were willing to go outside, and seek other opinions to make sure there proper services given. to our child.  I think personally that it gave a little more respect with the professionals we were working with and help them see we knew what we were talking about.  You definately want to be prepared, and have an idea what you are talking about when you are in the Team meeting for your child. 

Some things we like to bring to the meetings, are a composition notebook, we have one for the year for our child, that we can keep notes about each meeting, and write down questions that we have for the team or comments we can share with our child.  This is a great way to keep everything organized for the year, and especially for Dr. appointments, that you can keep notes of what the dr said and what the course of treatment is for each professional you will be working with.  Make sure to date each entry so you can keep track of the course of treatment and dates you were in there and find them easily, all in one place.

Comments that we hear a lot from parents is that their child isn't showing signs of having trouble in class therefore they were told they don't need to have accomodations for their kid.  They don't want their child to be labeled, or they can't see they don't want their child to be treated differently or be embarassed that they need extra help.

My answer to those questions is,  it is a matter of thinking ahead as a parent.  First you need to determine if you are going to be proactive or reactive when problems come.  There is nothing worse that having a school meeting when you are in the middle of a crisis or your child is failing a class.  I personally like to be proactive.  Tourette Syndrome to me, is just the symptom or the physical manifestation of everything else that is going on behind the scenes.  You aren't completing a 504 or IEP because of the tics in class.  You are seeking services to prevent the tics from getting worse, by addressing the needs of the anxiety, OCD, or ADD/ADHD.  The tics are caused because of stress brought on by those other disorders which go hand in hand for most kids who have TS.  Secondly,  labels, you just had one put on your child when he was diagnosised.  I think you are either ready to learn and embrace the disorder, or you are not.  Regardless, the diagnosis is lifechanging.  You have to change your way of thinking and realize that life will not be the same as all the other kids.  Your life will be different because you have different challenges and things to face, when dealing with the tics or other disorders.  It becomes your NORMAL. I learned with my kids, that our normal works for us.  I had to learn how to parent differently than I was taught, I had to learn to embrace, and explain things differently, and I as a person learned to be empathetic, and understanding and a lot less judgemental of others.  You can't have it both ways, to be like all the other kids without TS, and also have TS, and not have it affect your life.   Lastly, being treated differently,  Having TS is a great "Jerk filter"  you will find out who will treat you right and who won't.  There are times that being treated differently is a good thing, and being included like everyone is the good too.  You just have to determine when that will be,  but you would hate to not have things in place if you needed the exception.

A lot of our accomodations are for preventative measures, for those bad days that come.  Our kids didn't always use the accomodations, but just knowing they had the option to do so if necessary, was enough to take the pressure off that they never had to use them.  Does that make sense?

Here is list of common ones we have carried from year to year through elementary school.

1. Child will not be punished for his tic or symptoms associatesd with hsi diagnosised disorders,  ie. eye rolling, facial grimaces, sticking out tongue.
2. Preferencial seating in close proximity to teacher or away from distractions.
3. Large assignments will be ge broken down in to small chucks with each smaller assignment having specific due dates, to ensure projects get completed.
4. All additional time for assignments if tics are interfering with his ability to complete his work.  ie head jerks, blinking.
5. Be allowed to use audio books or books on tape for reading logs and assignments while following along in the novel or book.
6. Given additional time to take test or quizzes.  May test in isolation or in small group specifically for proficiency testing. 
7. Utilize verbal and no verbal cues to direct or redirect,  allowing breaks when necessary to relieve tics.  (Trips to office, bathroom, or locker)
8. Additional time or modifications for assignments if tics interfere with ability to complete school work
9. Modifications to homework as needed to be agreed upon between parent and teacher.
10. Extra set of textbooks for home use.
11. Discipline in private setting not in front of class or peers.
12. Child will not be penalized for missing supplies in class,  ie pencil papers, etc.  but be allowed to return to locker to retrieve then instead.  (Executive functions, ADHD)
13. Be allowed to leave class a minute or 2 early so he can make the transition from one class to another in a timely manner and relieve anxiety of the hallways.
14. Allow assignments to be emailed as attachments, message, or faxed to teacher upon completion, as well as turned in paper form at school.  (in case of lost papers, Executive Function)
15. Give child verbal cues to get them jumpstarted on assigment,  remind them of the sequence of what they need to next.
16. Child allowed to type written assignments.
17. Child be allowed to use an electronic planner with alarm function, to remind of what he needs to do. (ADHD,  very helpful for Jr. High, High School)
18. Child be allowed to visit a counselor or designated teacher on an as needed basis to assis working through any anxiey or emotional difficulties that may arise.
19. Contact parents when 2 assignments behind in class.
20. Child's disorders will be considered when a discilpine situation arises.
21. Child be allowed breaks during lengthy tests or proficiency exams.
22. Teachers be notified of child's disorder, at the beginning of the year.

Please remember these are not accomodations for 1 child,  we have 2 sons that have TS.  I created a combined list of the different accomodations we have had through the years with both of the boys.  Our oldest son is in High School, and therefore the accomodations have changed.  The one blessing this year for him has been the ability to have the electronic planner.  We did seek permission with his teachers and counselors for him to have it, and have stressed with him him that if he abuses the privileges, or doesn't use it, then the planner will be taken away.  This has been great for him so far.

If you every have any questions regarding who to go about getting accomodations or you would like to have some one along to your meetings for support or to help you advocate,  I would be happy to help you in this way.  I know it is a stressful time, and you want to make sure you get the best for your child.  You also want to make sure you build good relationships with the school staff and faculty as well,  you do have to work with these professionals your childs school career.  The teachers want to be acknowledged for their efforts just as much as the parent want to be acknowledged for ours. 

Cari