Thursday, March 27, 2014

Family History Section

I know I haven't blogged in a while, but not much has been going on lately TS wise. My tics have been on a downswing. They're a little less forceful and less frequent but no major changes really other than the natural waxing and waning of Tourette. I did want to blog about something that happened over spring break though and that I haven't gotten around to blogging about yet. 

Recently my brother who is 17 has been diagnosed with ADHD, mild OCD, and anxiety. He went through neuropsych testing in order to try to get accommodations in school and on standardized testing at the beginning of the school year this year and that's when he was diagnosed. He was very hyperactive as a child and definitely has had ADHD his whole life but has never been officially diagnosed until now. He may have had a preliminary diagnosis of it when he was young, but i'm not 100% sure about that. He's also tried a few ADHD meds over the past few months including Adderall, Ritalin, and Concerta. He didn't like any of them though so now he's on Lexapro which will treat both his ADHD and mild OCD/Anxiety. 

Anyway the real reason I am writing about this is because I found his report from the neuro-psychologist on the kitchen table over spring break. I already knew about the whole process and his diagnoses, as he and my mother have both been very open about it with me, but since i'm interested in neuropschology I figured I would flip though it to see how this kind of report is written. 

While flipping though it, I found the family history section. In the family history section it said "Family history includes Anxiety, OCD, ADHD, and Tourette Syndrome". I was sooo excited! You're probably thinking, Why in the world were you excited to see this? It's the truth, your brother has a sister and a cousin with TS so that means he has TS in his family history. Pretty simple. But no, it's really not that simple. 

For those of you who have been following my blog/ facebook for a while now, you might know why I was so excited about this. Both my mom and dad strongly rejected my Tourette's Syndrome diagnosis when I was first diagnosed and for quite a while afterwards. They insisted that the neurologist was wrong and that the things I do and have been doing all my life that the doctor was no calling tics were just habits or manifestations of my anxiety or nervous nature. They insisted that my tics would go away when I started taking medication for my OCD and anxiety and when they didn't go away they kept on ignoring the diagnosis and insisting that it was not correct.

When I started getting involved with my local Tourette Syndrome Association, Tourette Syndrome Research, and with Camp Twitch and Shout, my parents started to become more accepting, but still in the back of their head they always hold doubts. My mom especially goes back and forth sometimes being more accepting and sometimes being less accepting. Over the past half a year or so though, even though we don't talk about Tourette's very often outside of brief mentions of camp, my research, or a TSA event, she hasn't said anything negative about Tourette's or anything suggesting she believes I don't have it which is a good sign.  

Seeing the family history section of my brother's assessment was an even stronger sign that my mom is finally truthfully reaching an acceptance of the fact that I have Tourette's. The fact that it was there in the family history section means that she told the neuropsycholgist that she has a daughter with Tourette's and/or has family members with Tourette's. This is a huge step for her and one that makes me feel validated and accepted. 

Saturday, March 15, 2014

When Refilling my Medication...

I ran out of my prescription for my medication today and got someone new when trying to refill it. She asked what I take it for and when I told her it's for my tics she responded in a confused way with "What's that?" LOL, people....

Wednesday, March 12, 2014

Tourette Syndrome and Positivity- Rowena's Story

A video in a series of guest blog posts about Tourette Syndrome and Positivity. Check out Rowena's Story, a story of how Tourette Syndrome ultimately changed Rowena's life for the better.

Tourette Syndrome and Positivity- Christopher's Story

Christopher's Story: 
By: Jennifer Boies Fraser

Christopher (the red head) was diagnosed with Tourette's (and ADHD and OCD tendencies) when he was 4 years old. Because he was so young, we didn't really tell him. We felt he was too young to properly process his diagnosis. Besides, as far as we were concerned the diagnosis was valuable only in the context of giving us more information to help him.

We are very active in our community. Because we home school, there aren't many situations where Christopher has met kids before I have met them and their parents. Also, being home schooled he never had to get an IEP. His diagnosis just never came up.

Before we knew it, he was in upper elementary school and had never been told he has Tourette's. We knew we needed to talk to him. We didn't know how to tell him he had this thing - this DISorder - and not make it a negative thing.

He got this tic where he was sticking out his tongue, especially when he had food in his mouth. I told his best friend's mom about it, who is also a close friend of mine. I wanted her to talk to her children about it so that if they saw it they knew he wasn't trying to be rude or gross; he could not help it.

A few days later during bedtime cuddles Christopher looked at me and said, "Mommy, did you know that the reason I stick my tongue out is because I have tics. Do you know what a tic is?" He proceeded to tell me all about tics and how he has them. I asked him where he learned about this and he said," Oh, Ian told me."

My eyes filled with tears of love and gratitude. I was so amazed that this 9-year-old boy was able to talk to Christopher about his tics and did it in a way that left Christopher feeling very positive about it. While I felt bad that he had beat me to it, I was amazed at how well this precious child was able to communicate normalcy to Christopher. It was then that I was sure how much Ian and his family would always mean to us!

Tuesday, March 11, 2014

Spring Break

It's been 4 days of spring break and being home and my tics are so much calmer than they were a few days ago when I was in the middle of mid terms. It's amazing how being at home in a quiet and comfortable environment has this effect on me. I can't live in my childhood home however and I can't just go through life without challenge and stimulation. While breaks like this are much needed and very nice, my brain is a brain that needs challenge and stimulation to be happy, even if that means more tics. Tomorrow I get to see one of my best friends from high school who I haven't seen in a few months. I'm excited and it will make my tics worse again because of the excitement and stimulation but I still can't wait! :)

Monday, March 3, 2014

10 Problems Only People with Tourette Syndrome Understand

1. Hearing this yet again: "Oh so you can swear whenever you want? That's so awesome!"  

2. Being asked to "hold still" while having your picture taken 

3.Having a vocal tic and yelling "Hey" out the window as two cute guys are walking by...and then the light turns red...

4. When you can't just say it, you have to SCREAM it! 

5. When you knock over opened containers on a regular basis 

6. When a hair cut turns into a life or death situation. 

7. When your arm tic ends up hitting the guy next to you in the crotch...

8. When you've been hitting yourself all day and someone says "Well if it hurts, why don't you just stop?"

9. When you make a noise and the whole class turns around to stare at you

10. When you scream for real and no one reacts because they're so used to your noises