Saturday, March 30, 2013

talking about having Tourettes

First let me say HAPPY EASTER!!!

Second, sorry I have been MIA.  I took Hubs to the ER last Sunday and he had to have emergency surgery Monday morning.   He then developed a complication that set him back a couple days.  I am happy to report he came home yesterday and is slowly recovering.  Not exactly the spring break I was planning.

For Drew twitching has been something he has done for as long as he can remember.  First it was a shoulder shrug, then a hop step and over time they have developed.  One tic he as is that he holds is breath for a couple seconds.  That one bugs me.  I worry. His vocal tics come and go depending on stress.  We are seeing improvement since the Botox treatment.  That treats the simple tic of the head turn.

He has a couple complex tics.  The most recent is he puts his hand in front of his eyes and turns his head..

He gets so frustrated.  Tonight he was having snack and his body jerked and he spilled milk all over him and the table.  He immediately started to apologize saying " I am sorry.  It is my Tourette's"  I sat down and told him he NEVER EVER EVER had to apologize to me or anyone else for something he could not control.  I told him it is part of who he is just like his brown hair and brown eyes.  He told me he wished he had a sign he could carry saying he had TS.  He always feels like he needs to say he is sorry.

We started talking about how to explain it to people.  To educate them and how he could use humor.  It is a hard concept for a 10 year old to grasp.  I told him the best explanation to give is the one he gave the first time he met his rock climbing instructor.  "Hi my name is Drew, I have Tourette's, I twitch"

Works for me.  I have a couple of  my own. Some were swiped from other TS parents

Tic and the whole world tics with you...or at least stops and watches for a while.
A tic, a shout, that is what it's all about.
Sometimes I feel like a tic. Sometimes I don't.
And my favorite.  I made it up and hope it will make the parent Tshirt
Ticcing....It ain't just for clocks anymore!

With something like TS...Humor is the best education.  I hope I can help Drew to understand that.

Monday, March 18, 2013

Outcome of meeting with district

I have been putting this post off.  Not sure why because it is good news.  Maybe just so much to type?  Hesitant things would fall through?  I don't know but here we go.

Since moving to Colorado it has been one fight after another with the school.  The administration refused to get educated on Tourettte Syndrome.  Since the admin would not educate, the staff could not get educated nor could the students.  Every day it was a fight.  Drew was in a self contained classroom in California - not because of a behavior issue but because it was a good structured environment   He thrived.  His teacher in California was the most amazing woman who saw the potential in Drew.

Since Drew's IEP from CA was for a self contained class room the district decided he needed to be placed with kids who had bipolar, ODD and other behavior issues.  Not the best place for a kid who needed a quiet structured classroom. I couldn't even get him mainstreamed per his IEP.

In January I really started pushing for what he needed.  In small bits and pieces they started allowing him mainstream time.  The problem we were running into was that the kids in the Special Ed class were making fun of Drew and hitting him.  Problem was no one was telling me.  I would hear about it from Drew and then have to find out what was going on.  I started pointing out that Drew had no issue with the Gen Ed kids and the SPED kids had marked him as a target.

The special ed teacher watched some videos from TSA and went to the principal and told her Drew was in the wrong placement.  Didn't help.  The Gen Ed teacher went to the principal and told her Drew was in the wrong placement.  Didn't help.  It also didn't help that since the admin didn't understand TS or that anxiety  OCD and ADD are co-morbid.  They had labeled Drew a behavior problem.  I was also labeled a problem parent.

We had finally had enough - after 5 IEP meetings in 3 months and more time in the principal's office than any mom should spend  we decided to get an advocate.  She got the ball rolling and the next thing I knew we had a meeting with the principal, the advocate and the superintendent of special ed! I was so focused on that meeting, it consumed me night and day.  I was armed with TS information, IEP information.  I was a walking talking TS IEP encyclopedia. Oh yea, did I mention the letter from the Pediatric Neurologist who treats Drew's TS?

All of a sudden the admin starts changing their tune.  Scott and I arrived for the meeting.  We start talking about TS and how it affects Drew.  I very quietly hand the letter to the advocate who reads it and hands it to the superintendent he reads it.  The superintendent then says he thinks now that everyone has had time to get to know Drew we all agree he is in teh wrong place.  WHAT???? that was out of left field.  He also tells us he as a background in Autism and understands the similarities.  WHAT?????  After hearing everything he concurs that Drew is in the wrong class.  WHAT??????????????????????? We were being heard for the first time in months.

The next thing we know it is being discussed about how to handle Drew's math issues - only thing that is not on grade level.  Also discussing how to handle the social emotional piece since we refuse to let the psychologist for the SPED class get near Drew (another post for another day).  Then we start talking about next year and what school Drew will be going to.  Colorado has school choice. Meaning we can petion for what school Drew attends.  He could continue at his present school through 6th grade but there was no guarantee that he would be allowed to go to the JR. High with his friends at his current school.  Changes are he would have to transfer back to his home jr. high.  Our other option is to up root him one more time and put him back at his home school for 5th and 6th grade so he can transition with those students to Jr. high and have friends before that transition. I think the principal was relived when Scott and i started leaning towards moving him back to his home school. We have now made the decision to move him to his home school in the fall.  The superintendent is setting up a meeting for the new principal, me and the superintendent to start the ball rolling.  The superintendent is also ensuring that the staff will be educated in TS before Drew starts and that staff from the new school will be making visits to the current school to get to know Drew over the next couple months.

The best part?  Drew spent today in the General Ed class for the whole day and loved every minute of it.

All it took was a whole lot of FAITH TRUST AND lots of people who love that little guy and know what is best for him.  a dash of pixie dust didn't hurt either.


Saturday, March 16, 2013

changes to diet

I am research fanatic.  I am addicted to learning.  It is like a drug for me.  I had been seeing articles about Tourette's and diet.  We had made an effort to become gluten free several years ago and we did a good job.  At some point we fell off the wagon and went back to our old ways.  I am not sure how Drew's tics were during the time we were GF.

My research has revealed that there may be a connection between many diseases and gluten.  I am also finding many reports of milk and tics.  Milk seems to increase them.  I know soy milk can cause an increase in them as well.  So we are going to try Almond Milk and see if we see a difference.  In the next couple weeks we will also revert to our life style of being GF.  Bob's Red Mill and Pamelas GF are good brands for GF.  So I will be going back to them.  We also love Eating Well Magazine for great recipes which can be altered for GF life style.

Drew has an aversion to many foods so it can be a challenge to cook for him.  He is not a veggie eater.  it is a texture thing.  He is going back to OT thru Children's in the next few weeks.  As the TS has gotten worse he has lost some fine and gross motor skills.  The schools will only give OT from an educational standpoint so all they are offering is typing skills.  He needs more.  So the school is teaching him to type and Children's will be tackling motor skills and sensory issues which have also become worse as the TS has gotten worse.

Wednesday, March 06, 2013

I will fight for you every day of my life.

We have had a lot of problems with Drew's school and district in the past few days.  Hell I take that back, since we moved to Colorado it has been a giant nightmare. I had another fight with them yesterday about bullying and placement for Drew (a topic for a later time) Tonight made it all worth while.

Drew:  Mom you look exhausted.

Me:  I am.

Drew:  The school?

Me: yea.  but will keep fighting for you  and for what is right everyday of my life. Because that is what I do.

Drew:  I know, that is why I love you

Monday, March 04, 2013

New Treatment for Drew

Drew has a very severe neck twitch.  It causes pain.  He has given himself whiplash several times and pulled muscles in his neck.  When we saw the neurologist at Children's in January, she gave us a new option beyond medication.  Today, Drew underwent botox injections in his neck.

Drew was a bit apprehensive.  We did find out the hard way that he is allergic to the adhesive used to hold the numbing patches in place.  That was the worst part for Drew.  But the cream did what it was supposed to.  The injections were administered without pain - all but the last one.

We were advised that the injections would not take effect today, tomorrow, or even the next day.  But hopefully by the end of the week we will see some improvement.  In two weeks we will see maximum effect.  If it works then Drew should have relief for up to three months.

We know there can be side effects and we explained them to Drew.  He decided it was worth it to at least try this.

This is just one treatment. We know not all treatments work for all patients.  All we can do at this point is wait and watch and hope there is some relief for Drew.






Sunday, March 03, 2013

New Direction

Over the past year I have found my blog has lacked direction.  I have written about many things family, friends, new job, moving.  I have had very little motivation to write.  Granted it has been a hectic few months. I think I have found my direction.

If you have read many of my posts you know my youngest son suffers from Tourette Syndrome. My husband and I adopted Drew at birth.  He had a rough start and we knew from the beginning there would be challenges.  My dad often commented that though he did not know why the Cosmos lined up and some force brought Drew to me for a reason.

I have often wondered why Drew came to us.  I thought several years ago it was to be a fighter for what Drew needed.  I was right to a point.  I am Drew's mom, fighter, advocate  number one to give him love.  I am his safe place.  The one place he knows no matter what he can be who he is and let his feelings known.

I have searched for websites and blogs chronicling other mom's struggles with Tourette Syndrome, an syndrome that gets little recognition and funding for a cure or research. It is a very misunderstood neuro biological condition that is often portrayed incorrectly on TV.  When someone says Tourette's Syndrome, the first image is of someone who cusses and can't control it.  That is a small part of Tourette. It is called Coprolalia and only about 10% of those who suffer with Tourette have this condition.

Drew has a severe case of Tourette Syndrome. He tics all the time.  Even in his sleep. We are fortunate to have moved to Colorado where the Children's hospital is making progress in managing the symptoms of this disorder.

Facts about Tourette Syndrome

It affects more boys than girls
1 in 1000 have this condition
There is no cure.
It is a spectrum disorder.
OCD, Anxeity, and ADHD are co-morbid conditions. (Drew has all 3)
No two cases of Tourette are the same.

I have decided to use my blog to educate about Tourette as well as a place to vent and share our struggles, and day to day triumphs of Tourette.  My hope is that I can inspire or help just one mom.  I also hope to build a network for other parents to find a place to learn and help each other.

I recommend if  you want more information to check out Tourette Syndrome Association.

I welcome  you to our new journey.