Sad News

We received some really sad news yesterday.  Sam the Red-Tail Hawk, that we were going to see next week, died suddenly from an infection she contracted a few days ago.  Matt and his family are devistated as you can imagine this Sweet pet, was a big part of their life.  They grew to love her very much for all she contributed to their family, and caring for her. 

We will still be having our Meeting on the 25th but we will be changing what we are doing in light of this news. 

Our deepest sympathy goes to you and your family Matt.  Thank you so much for being so willing to share Sam with us.

In leiu of the sad news- we are changing plans for the Group Meeting on Monday, August 25th.

We will still be meeting at
The Church of Jesus Christ of Latter-day Saints
8250 Cornell Rd
Montgomery

7:00 p.m.
Parents will be meeting in the Room across from the Gym-
Topic
504 Plans- IEPS and School issues
Question and answer session helpful hints

Kids- Meet in the Gym
Adult supervised
Game Night-  depending on number of kids-
Group games or Fun Card and board games

Refreshments in Gym- Rootbeer Floats

Thank you everyone for your understanding and flexibility. 

Cari

The Miracle of the Chinese Bamboo Tree vs Parenting

I heard a wonderful talk a couple of months ago with the most incredible analogy in it.  The talk was very inspirational to me.  It was a discussion on parenting, persevering.  The most inspirational story was the story about The Miracle of the Chinese Bamboo Tree.  I wanted to share it here for those parents who may be wondering if all the work, therapy, love, and discipline will ever pay off or will they ever see the results of their efforts.  (Stephen R Covey, "7 Habits of Highly Effective Families")

"After the seed for this amazing tree is planted, you see nothing, absolutely nothing, for four years except for a tiny shoot coming out of a bulb. During those four year, all the growth is underground in a massive, fibrous root structure that spreads deep and wide in the earth. But then in the fifth year the Chinese Bamboo tree grows up to eighty feet!"


Many things in parenting are like the Chinese bamboo tree.  You work, invest time and effort and do all you possibly can and sometimes you don't see anything for weeks, months or even years.  It's this process that often demands patience to adapt to situations you didn't set up-- anything from buying track pants because they are softer than Levis, to allowing items to be touched as many times as makes your child feel even, making it through the rages, answering questions and commenting on stares.  There is speed reading, speed writing, but no Speed Parenting.

As you may or may not know,  Tanner is the oldest of 5 children.  Aaron and I are parents of 4 sons and a daughter.  Tanner and our 3rd son Mason have Tourette Syndrome.  You see a lot of Tanner, on the blog because he is the most outspoken, and paving his way.  I don't post the "Accomplishments of Tanner" on here to "brag", (we are proud of him, and his determination as any parent would be of their child)  We post the accomplishments and activities, to show other kids, they can be or do whatever they want in spite of having Tourette Syndrome.  Tourette Syndrome can be a lonely, isolating disorder.  I think many parents feel isolated in their journey because there aren't many families who talk about having kids with TS.  It can also be isolating because of co morbid disorders that go along with it.  (OCD, ADHD, Depression, Anxiety, Rages)  which at times can be more debilitating than the TS, which means there are the stares, and comments, and difficulties, in school, or even activities you can't participate.

As Parents, it seems like you live a double live-  there is the life at home, when your child may be completely melting down, and the life at work or school.  Most times in our life, no one would believe that we were doing all the correct things at home to try and circumvent the meltdowns, or behaviors.  We would often hear about Tanner. "Oh he is perfectly fine at school,  We have no problems.  What is going on at home that there would be meltdowns and rages all the time."  I felt for years I had "Stupid Parent"tattooed on my forehead.  After all these years,  we have come to accept our home as the "Safe Haven"  I wouldn't want my child to melt down like he does at home at school.  I am so glad he feels safe, and comfortable to let out his stress at home.  (granted we had to adjust what ways were okay to do that) but I am so glad they want to come home and tell me what is happening.  We were doing everything right.  We need to adjust along the way but we are planting the right kinds of coping skills, and roots for our kids.

Next as a parent, you work, work, work, going from doctor to doctor, and specialists.  Then there is the medication roller coaster,  which one works, the side effects, one doesn't work,  or you finally get on a good even keel, and then something needs to be tweaked.  Did I mention dealing with everything with school, and getting it set up and working, and the good school years, and the bad ones, then the teachers who "GET IT" and those who don't want to be bothered.  It is emotional and physically draining.  I didn't even cover, keeping  up with your other children  functioning and helping them feel like they aren't living their brother or sister's TS life. 

This story can apply in so many ways, I hope you can take from it what you need to give you the strength for your Journey.  We share our story and Tanner's life so you can see that the Journey is worth it,  all of the effort and work will pay off, and eventually you will see your sprouts of bamboo.  It takes years,  but you are laying the root system to give them the strength  and tools for the rest of their life.
Sometimes we take our children's goodness for granted. Let's tell them how truly amazing they are, how each step in the right direction is valiant, even if sometimes its one step forward and two backward, don't forget the step forward. They are facing a strong head wind--at times a hurricane.


BAMBOO, my Friends, BAMBOO!

February/March Community Out Reach Presentation

Monday, February 28th, from 7-8
The Church of Jesus Christ of Latter-day Saints
8250 Cornell Rd, Montgomery

We are having a community outreach Tourette Syndrome Youth Ambassador Presentation. Anyone wanting to learn more about Tourette Syndrome are welcome to attend. This is a great opportunity for educators, family, friends, coaches, and others who work with or associate with others who have a disability to learn more about what it is like to have Tourette Syndrome and live with a disability.

You can click on the Flyer above to read more about the program, and presentation.

More than Tics-
Coordinator Cari Hutchison

www.morethantics.blogspot.com

WCPO Student of the Week- February

WCPO Student of the Week Tanner Hutchison- February 7th

We were all surprised to hear that Tanner was nominated as WCPO Student of the week February 7th.  He was nominated by 2 different teachers, one from Mason Intermediate School, where he did a lot of his presentations in 2010 and on his home turf at Milford High School.  Neither Teacher new the other had nominated him, so it was sweet for Tanner to be acknowledged for his hard work in giving the Tourette Syndrome Presentations. 

Tanner received a Plaque to hang on his wall, and was interviewed by WCPO Channel 9 news.  He was very honored to receive the award. 

Click on the above link to view the interview.


While we were in the mood of celebrating,  Tanner also had his Eagle Scout Award and was honored in his Eagle court of honor, on February 13th.  He has worked hard to complete his Eagle Scout requirements, and excited to continue working on his Palms. 

Congratulations to Tanner for his hard work and dedication to his goals.



January Meeting-Oops-I forgot to post

We had our January Meeting last night, and I realized I forgot to post the information on the blog.  We played the amazing math race, and enjoyed rootbeer floats.  We were excited to welcome 2 new families in the area with TS kids.  Our group is expanding and we love it.  It provided a great network of friends.  The kids sure enjoy being able to themselves.

We will be meeting again February 28th at 7:00 at the church again.  We will be having a Tourette Syndrome Presentation by Tanner Hutchison. 

We will post more information as we get the final plans made.  (I promise)

Tanner and I traveled to Independence, Kentucky a couple of weeks ago to do a presentation for our friend Spencer at Twenhofel Middle School.  Spencer was great in assisting Tanner with the presentation to his class, and Team of teachers and Students.  It takes a lot of courage to talk about having a disorder like Tourette Syndrome.  Spencer was awesome and gave us some great facts about some famous people who have Tourette Syndrome, and OCD.   Tanner was excited to see there were other kids who talked about things they have inherited including a few who also have TS.    Thank you so much for inviting us.  It only takes one person to make a difference in the lives of many. Spencer and Tanner did a great job doing that.

If you would like more information on scheduling a presentation,  contact

Cari Hutchison by email at morethantics@gmail.com

More than Tics Family Support Group Meetings and update

Just a little FYI-

We have decided our group meetings for the months of November and December we will take a break from holding.  This is to allow everyone to accommodate your busy schedules for all the holiday festivities and parties, and family events.

We will reconvene in January, 17th, 2011 at the Church.
The Church of Jesus Christ of Latter-day Saints
8250 Cornell Rd
Montgomery Ohio 45252

We have plans to put together
"An Amazing Math Race"  for everyone to participate in.    Thanks for the great idea Becknell Family!  They will be heading this month's activity up.  We sure appreciate their help.

We have been very busy with the Youth Ambassador presentations.  Tanner just finished up a 2 more classes at Mason Intermediate.  Yesterday, he presented on his home Turf- in Milford, at Milford High School to 3 psychology classes, in between tornado evacuations and classes. It was pretty exciting.  He did a great job talking with the older classes, of kids, and to his peers.  AWESOME!

We have one more presentation scheduled November 19th at Mason Intermediate, and then a rest for the holidays.  Mason has really loved the message of acceptance, and tolerance, that Tanner has shared so this next presentation will be to a class just for informational purposes only and to share that message.

Oh, and just in case anyone has questions, or issues please understand we are not Representing the Tourette Syndrome Association. 

See you in January-  until then you can email us with any questions or concerns.

http://www.morethantics.blogspot.com/

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