90 seconds with TS

The first time I truly understood what TS and the co morbid symptoms was like for a child was while watching a video given to educators on teaching to children with TS.  It can be ordered here 

The presenter has a son with TS and did an exercise for the educators to find out what it was like to live with TS.  I cried as  I watched.  I had no TRUE idea what my son was dealing with.  Yes I heard the words and it was explained to me.  Not until I attempted to do the following exercise did I start to have a light bulb go off in my head and said OMG what have I closed my eyes to.  How can I be the best advocate for my son if I didn't understand what he was going through.  This segment helps someone who needs an understanding for those who don't know TS,  Try the exercise as she does it.  When you are done think of Drew.
  Or as real as anyone who can have it for 90 seconds of the exercise.  You can go back to normal but a TS kids will keep on ticcing.

Something else people don't understand is the toll it takes on the body... Drew is in motion all the time  There is not a time when his body is not moving.  This includes when he sleeps.  Hard to sleep with constant movement.  I know teachers don't like it when I keep him home for a day or half a day to let him sleep.  His body needs time to recover when the episodes gets bad.  Some days are better than others.  some days are a nightmare.  He has injured himself with this tic but he strives to be normal.  He rockclimbs,tumbles, plays basketball, does regular kids stuff.

Watch the video, do the exercise and leave me a note as to how it went for you.  I would be interested to know..

Cathy

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.

 

CVS Run

First let me say this couponing thing is addictive. If I am going out for something specific I check all sorts of sites on line to see if there are any coupons or discounts available. I was told once I started it would kill me to pay full price for anything ever again. I understand that statement now.

Today I actually made a trip to CVS. They had a one day coupon for 0.99 for a 12 pack of Pepsi product. I firmly believe that you can never have enough soda on hand for an impromptu party or taking to a party. So I grabbed that. I also had a coupon for .75 off of TICTACS. CVS had them buy 2 get one for a penny, Drew loves them so I thought he would like a treat. I also found today a coupon for CVS specific for a New Hershey Aerated chocolate bar for free. I spend 3.09 and got 3 large tictac mint boxes, a 12 pack of pepsi and a candy bar. California adds a tax for the cans so it was 2.43 before the CVR tax. Works for me.

Frugal

My word for the second half of the year is FRUGAL. I am making a game of clipping coupons and now seeing how much I can save. I will only be going to4 stores. I don't think you save money if you drive all over and spend as much in gas as you save. I am choosing CVS, Bel Air, Target and Henry's. We are also going to start getting our veggies from the farmer's market. I actually pass all the stores (except the farmer market) almost everyday on my way somewhere so I don't think it will be wasting gas because they are on my direct route. I figure if I make it a game to save money then it won't be so hard and I will think twice or three times before I buy something. I am using Krazy Koupon Lady and Penny Pinching Mom to help me understand the finer points of couponing. I even found out that our local paper if you are a subscriber to the Sunday paper will deliver last Sunday paper for free so I will get 2 copies for the price of one The SacBee has a special going right now where I can get the Sunday only for 20.00 a year.

We have lived in this house almost 3 years now and I have yet to put much on the walls. Drives my Mother in Law nuts. So I am looking for some great ideas. I joined Pintrest to get ideas.

I have really gotten hooked on blogs lately that have cool (easy) crafty things. Like this one, isn't this the neatest idea? Scott would probably have a fit if I did something like this but oh well.I want to do lids for several events so they will be useable more often.

So if you want come on my journey to learn how to be frugal and not pay full price for anything. It should be an adventure. Who knows I may put all my savings in a special account to pay for a trip to Disney since I can't seem to win one.

progress

We are making progress in the foods Drew eats. For the longest time it was only carbs. It got to be very challenging and VERY unhealthy. In working with his OT, she came up with a way for him to try new foods. He gets to be a scientist. When he is introduced to a new food he gets to examine it for color, textures, smells etc. Then he has to try it. In some cases the first try may only be a lick but he is not allowed to say he doesn't like something until he has journaled about a food 10 times. I am happy to report instead of just potatoes and corn on the cob he now eats dried bananas, snap pea crisps, sweet potatoes stawberries and blueberries. He has ruled out for the time being freeze dried mango, kiwi is iffy at best. He has licked broccoli and asparagus and the jury is still out on those but in our eyes that is MUCHO progress.

Raising a child with a disabilty

First let me say this week has been incredible. THe lumbar puncture not so much. I will explain what happened in the next few days. But until then let me say my dad saw Holland this week and has a new appreciation for it's wonders, beauties and difficulties. And I have a new appreciation of my dad as well

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Canes

I wanted a cane that wasn't an old person cane. You know that aluminum/gray one that old women carry. I didn't want that. I am only 43 facing a real bum diagnosis. I can deal with it. From what I can tell it is not a death sentence it is just a life changer - God telling me "Hey time for you to realize you are not in control and you have got to trust and put your Faith in ME." HE will hold me in his hands through this and no matter the outcome He will have my back.

Back to my cane story. I decided that I wanted FUN canes. Canes with personality like me. Quirky, fun, mischievous, daring, happy.... I found a really cool website where I plan on ordering 3 canes from. One is black with flames - like House carries. One is a quad cane that is blue with the moon and stars painted on it. The third is pearlized purple with rhinestones. Due to a monetary slip up. I over paid a bill by 2000.00 and am currently waiting for the refund I can't order them yet.

But I went to CVS and got 2 canes. One is covered in pink roses and the other is brown and black checked. I may go back and see if they can order me one other one I liked but they were out of it at the time.

I have come to the conclusions canes are like purses - you can never have too many.

proud owner of....

My doctor today gave me 3 things. A script for a cane to help with balance, the signed forms for me to go stand in line at the DMV to get a handicap parking pass and an actual appointment time with a specialist to figure out what is wrong with me. It is the end of March but that is better than not having one at all. This specialist picks and chooses his patients based on case history. So him agreeing to take me is the first step.

I know I am facing a lumbar puncture, another MRI, nerve biopsies and who knows what else. My doc thinks he has an idea what this is. I am not a fan of what I have read of his possible diagnosis. Chronic inflammatory demyelinating polyneuropathy. At this point it is just a guess.

It is hard to describe the sensation I feel at times. My arms feel numb and my legs feel like they are being tazed. at times it is an all over feeling of tingling like right now. Like there is a low voltage current running through me. I won't lie I am scared. I know there are treatments to put this in remission.

Just like everything else, God knew me before I was born and picked the path I was to travel. I may not understand why it is but it just is.

Putting thankfulness into action

It hit me this morning during church that for the past month everyone has been blogging about what they are thankful for OR putting it on facebook. I decided I wanted to start a December movement.

It is time to put our thankfulness into action. I challenge everyone who reads my blog to do the following, challenge your readers. Post what you do here and have your readers do the same on your page.

Do something for a stranger everyday in December. It doesn't have to cost money. Let someone with fewer items go ahead of you in the grocery store or post office, help an elderly person get a cart at the store, put a quarter in a meter that you notice is about to expire, let a car into traffic ahead of you. The list is endless. The power of blogging and Facebook is amazing imagine what a wonderful holiday season it would be if we each took 3 minutes each day and made a stranger smile.