Friday, April 26, 2013

Moving back to taking my exams in a separate room

Yesterday and today were the first days i've taken my exams in a separate room in college. I took all of my exams in high school in a separate room because of my tics and in college I thought I could move back into a room with a small number of others when taking exams because my tics are a bit more mild this year. I posted about this a little before and in that post I mentioned that the last two times I took my exams in a room with another student the other student had to leave the room because my tics were bothering her. I thought it best for everyone that I move back to taking my exams in a separate room. I don't feel upset about this really. I took an exam yesterday and today in a separate room and I didn't have to deal with thinking about if my tics were bothering anyone. I was more focused on my exams and that's what matters. I have TS which is not my fault and if taking my exams in a separate room helps both myself and other students, then I call that a win. Letting other people provide you with the accommodations you need is not accepting that you are any less than any other person. It's realizing that you are just as important as everyone else and so are your needs.

Friday, April 5, 2013

Meet Ab: A Guest Blog from A Mother of a Child with Tourette's

Meet Ab: A Guest Blog from A Mother of a Child with Tourette's: 

My daughter "Ab" has been dealing with many different issues since the age of 4. Right after she turned 4, she started displaying tics such as eye blinking, finger bending/stretching, and a low, quiet "uh" sound. I brought her in to her Pediatrician's office for an appointment, and ended up seeing another Dr. at the small clinic because her Dr. was on vacation. The man had the audacity to tell me that my daughter had nothing wrong with her, and she was just acting out because I didn't give her enough love and attention! Those were his exact words... "You don't give her enough love and attention". I was appalled!! Yes, I was only 27 years old (and looked 18), but that doesn't make me a bad parent. I was a VERY involved, AT HOME mother. My daughter had my 24/7 attention!! We were ALWAYS playing, exploring outside, mommy & me classes, going to parks, riding bike, roller skating, playing sports, cuddling, doing crafts, pizza day parties, picnics, spa play, learning, etc. She had SO much love and attention from me (and her father, grandparents, uncles, cousins, and neighborhood friends). We even co-slept!! I'm sure you can imagine how upset, royally mad, offended, and confused I was.

I brought her into a different clinic the following day and met with a new Pediatrician. He diagnosed my daughter with "tic disorder" and spent a good 10 minutes reassuring me that the last Dr I had seen was incompetent and horrible, that I had done NOTHING wrong to cause this, and that it's either a childhood phase or a neurological condition called Tourette Syndrome. He explained to me that tics, both motor and vocal, need to be present for at least a year before a diagnosis of Tourette would be given, and that I should just continue to monitor to the tics. He said that they could go away, or may get worse. He shortly after left the clinic to "move back to his home state".

The tics continued, constantly waxing and waning (coming and going, like a rollercoaster), and every time a set disappeared, a new set would shortly take it's place. In the beginning, most of the sets would bring all new tics. After a bit, previous tics started to re-emerge but she always has a different combination of tics each cycle. Most of her tics have been harmless but there have been a few that have become quit painful, aggravating, and embarrassing for her. As soon as the pain and frustration started, I brought her in to her current Pediatrician for a referral.

We were referred to a Pediatric Neurologist for evaluation, and he did fully diagnose Tourette Syndrome. This was at age 6.5, so 2.5 years after the tics started. Ab is currently 3 months shy of turning 8 years old.

We've begun to experience many more ailments with Ab within this past year, and are now getting further testing and treatment for those. Tourette Syndrome has quite a few common co-morbid disorders, and it seems like Ab has gotten hit with them all. She suffers from extreme anxiety (and now looking back, I believe she's had this all her life and we mistakenly took it as shyness and timidness), severe insomnia, migraines, OCD, sensory integration, and some difficulty with learning; slightly with reading, a lot with math, and some speech pronunciation issues at ages 4-5 that required therapy at school. She may possibly be ADHD, but it's so hard to know with so many of her current problems having overlapping symptoms with ADHD. I guess we'll find out soon.

We haven't medicated Ab up until now, but due to the severity that everything has become within the last few months, we are presently looking into a (hopefully mild) medication to help her. She is so overtaken with frustration, anger, and sadness lately that I feel it's required for her at this point. I hate the idea of medicating my 7 year old, and even more so seeing as the medication choices are so potent, but it really has come to the point that it's required for her happiness and health.

Aside from Tourette's and all it's co-morbid issues, Ab is an amazing, beautiful, hilarious, creative, spunky, sweet kid. When she isn't overly frustrated from her tics, she is the funniest little kid in town. She loves to make jokes, do goofy things, and pull little pranks on people... a whoopee cushion being her current fav She excels naturally in ballet and jazz, and also loves gymnastics, baseball, swimming, and just being a crazy wild kid. She is an absolute blessing, a gift straight from the heavens, and no doubt the apple of my eye.

Tic loud, and Tic proud! Love who you are no matter what that entails, and never, EVER let anyone bring you down!

**I love you Ab, you make me more proud than anything in this world. You are the reason I wake up every day! Never forget how special, how wonderful, and how loved you truly are.**


Ab at 4 years old when her first tics started: 

Ab at 6 years old when she was diagnosed: 

Ab today at 7 1/2 years old:

Wednesday, April 3, 2013

My friends once again make me feel so much better about embarrassing tics :)

I didn't get a change to see another one of my close friends, Lora yesterday because she was busy studying for a test but today I had dinner with her and am studying with her now. From the very first time I met her she has been more than awesome about my tics. She asks questions, and even jokes with me about my tics. Today when I had dinner with her she of course asked about my blue tape which I am still keeping on my fingers when out in public because of my middle finger tics that have decided to come back this week with a vengeance! So anyway when she asked me about it I explained. I told her I was having a tic that wasn't exactly socially "cool" and she was quick to pick up on it and then started giggling in of course kind of "laughing with me" kind of way. She asked me a few questions like "why haven't I seen it before" and I explained it was one of those tics that comes and goes and she also asked me why "forbidden" things often become tics and I did my best to explain that as well. We actually ended up having a long conversation about TS spurred by this. My favorite moments from this conversation were when Lora told me she wanted me to take my tape off when we were back at my dorm so she could see my tic, and when I said "you find this amusing don't you?" and she responded by giggling more. When we got back to the dorm, I took my tape off so I could type better and she got to see my new tic. When she saw it she pointed it out and said with excitement "I just saw it!" and started giggling some more. I had fun laughing about this tic with my friends. She is another amazing friend who makes me feel comfortable about ticcing around her and that is so important for me with a tic like this that I would usually find embarrassing and distressing. Tonight that usually unpleasant tic is something I am laughing about with my friends and I'm already feeling so much better about it :)

Tuesday, April 2, 2013

I love my friends!

One of my friends asked me what the blue tape on my fingers was about and when I told him he was great about it! He asked me some questions and since he is one of my close friends he knows I don't mind talking about it. A few minutes ago I got fed up with having to deal with the tape on my hands because I was typing something up for a class and it was making the typing very hard! and since I am just in the room doing homework with the same friend I figured it would be okay. I made a comment to him that the tape was making it hard to type so I was going to take them off and he told me that was fine and that he wouldn't mind at all if I flipped him off. Understanding friends are the best! :)

New Strategy

Hey Everyone! If my responses/ posts/ comments are sparse over the next few days, I am sorry but typing is a little difficult for me right now. My dreaded middle tic has come back and in order to avoid giving people the middle finger, i'm trying a new tactic of taping my pointer and middle fingers together on both hands. So far it's working really well! but its really hard to type! this message is taking me so long to write! anyway I hope this tic passes soon so I can un-tape my fingers! and I hope the tape doesn't result in too many questions from people. explaining myself will be better though than flipping off random strangers lol 

Monday, April 1, 2013

Psyc Class....

Just came back from my psyc class. The girl sitting next to me asked me to stop knocking me knees (which is a tic). It is a very large class and there is no way she would know I have TS, so I politely responded with "I can't help it. It's a tic". I don't know if she understood what I was talking about at all but at least she didn't ask me to stop again. I hate that my tics bother people sometimes. I really don't want to bother them and my tics bother me way more than they bother other people. I can promise you that.