52 Weeks of TS: Week 11

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 10 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

I have Tourette syndrome. Have I mentioned this before? Well of course I have, maybe too much. That thought has been going through my head all week. Do I talk about my TS too much? Does the constant conversation feed my disorder? I mean it’s not as if I’m walking around and telling strangers, “Hey, I have TS”, but I continually bring up the conversation in certain social settings. I guess what I’m saying is, is it too much? Is my activism annoying people? Well if it is, guess what? I don’t care!!

Like I said before, I’m a super hero armed with a mouth, and the first step to education is opening that mouth. I HAVE TOURETTE SYNDROME. This is why I do what I do, if you want to ask me about it, I would love to tell you whatever you want to know.

I actually had a pleasant conversation this week with someone about TS. I had to get a heart sonogram because I’m on Adderall and because my mother passed away at a young age from a heart attack (love you, miss you mom). The technician performing the procedure had me in a position that I was afraid I was going to hit her with my elbow when I ticced.

She let me position myself to where I was comfortable. Not knowing much about TS, she openly asked me question after question, and I openly answered all of her questions. It was a great feeling to be approached on the situation as she did, and to then educate her. Yes, educate someone in the medical field.

I wish it was this easy in all situations, but it’s not. I had a friend ask me, “If someone was to approach me about my TS, how would I like them to do that?” That’s an easy answer for me, just ask me, but that’s just me. There are many people out there who are not as comfortable as I am. It can be a very delicate situation, but I guess to answer the question, you really have to feel out the situation.

If you notice someone ticcing and you feel the need to approach the situation, start off discreetly and with compassion. The person is more likely aware of what they are doing, but more importantly probably very self-conscious of their TS. I am very open about my TS, but that doesn’t mean I’m not self-conscious myself.

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Believe it or not, teachers don’t have it easy, either

I cannot believe I waited an entire 8 months to post…

My first year of teaching is coming down to the last 3 weeks. To say I’ve learned a thing or two is an understatement. Being on the other side of the table has been a little overwhelming and I found myself feeling bad for the times I was not in the least bit sympathetic towards Jacob’s teachers.

It’s not easy being on either side. This is my only excuse for not posting….stress. By the time I get home, It’s time to think about me and my family. I learned after the first few months that your priorities change when your number one priority needs you the most. I can’t wait for these next few weeks to pass so I see more of him.

He has been doing good considering another child started mocking his movements a few months back. Jacob took it upon himself to start twirling a pencil in his right hand because he figured it out that his tics could be somewhat controlled when he does this. I talked to our school occupational therapist and told her a little about Jacob. She recommended that maybe I should get him reevaluated for OCD.

Jacob could care less (for the most part) about having tics on daily basis but he freaks out about the smallest things and he is absolutely terrified about aging. He’s 12! He does not want to get older and he cried as his birthday approached last year and he is already started to panic about this year.

I’d really appreciate some input from other parents on this issue. It’ll be a few more weeks before I’m able to get him an appointment.

I will go with the promise that it will not be another 8 months before another post. Comment me on here or visit my Embracing Difference page on Facebook. I’d love to hear how you or your kiddos are doing.

List of all upcoming and archived webinars, including May 21 on treating young children with OCD

THIS WEEK’S WEBINAR

Treating OCD in Young Children

May 21, 2014
Presented by Joelle McGovern, Ph.D. – University of Pennsylvania

Treatment of very young children with Obsessive Compulsive Disorder (OCD) requires much work within the family context, including direct treatment with the child as well as with the parents. A playful approach to the direct cognitive and behavioral work with young children, including exposure based activities, helps a child to engage more fully in treatment and thus leads to more mastery and success.

In addition, a “transfer of control” model is utilized when working with parents, wherein the therapist helps parents master and apply the core principles of treatment with their child.   This transfer then allows the family to engage in therapeutic interactions at home between sessions.  The creation of a developmentally sensitive treatment that includes parent involvement will be discussed and examples of how to make core concepts understandable and exposure based work possible with young children will be presented.

REGISTER FOR THIS WEBINAR »

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The “perfect” ending to the school year

One of the biggest internal struggles that parents of special needs children face is when…and how far…to “push” your child. Your goals are usually the same as any other child…to be happy, make friends, have others in their lives who love them and treat them well, get through school, and be as independent as possible. How you get them there can be the most complicated part.

One of my best friends is the most successful coach in college gymnastics. One of her many gifts is the ability to motivate and inspire…which doesn’t mean holding your hand…it involves giving you a little kick in the pants at times. In going through our most difficult years with our son, she was one of the only people I talked to about all that was going on here at home.

I was scared, and depressed much of the time…and frankly a lot more unsure of myself and down in the dumps than I had been before…thank you for hanging in there with me! I had young children, all my family lived at least 15 hours away, my husband was busy with a crazy job, and I was a NJ girl living in the south…I didn’t quite fit in. She became my family…my mentor, the voice of reason, and my best friend.

To sum up what I learned from all of my conversations with her…when you have a child that struggles, you can’t focus on the excuses. Your focus has to be on visualizing what they need to accomplish and get to work. For a child who has a health issue, it’s important to start early by educating them on their disorder, their treatment, and how to manage it…from appointments with Drs – to getting out and taking their own medication.

The world is not going to be kind to them at times, and they are going to get knocked down…that’s just a part of life. What children need to learn is how to pick yourself up, dust yourself off and keep moving forward.

Sounds simple…far from it.

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Beyond the diagnosis

I will be syndicating the posts from my blog, Tics & Tats, here on TSParentsOnline. If you want to know more about me and my connection to Tourette Syndrome, just click on my name for my bio! Or visit Tics & Tats!

It has been a beautiful warm day in Georgia, and I’m back at Camp Twin Lakes starting to get ready for the season…I can feel now that summer is just around the corner . My summer job is working as the Medical Liaison for Camp Twin Lakes to help support the medical programs for the camps that come to the CTL Will-A-Way site. Today was a family day for one of the local camps to help introduce the children and families to the facility.

The organization that visited today serves children with many different disorders…from cerebral palsy and down syndrome, to autism…they have a very diverse population. Watching all of the different children interact and play with each other is amazing. Towardsthe end of the day the director gave the parents the opportunity to sit together and share their stories with each other…it was heartwarming.

One of the mom’s shared that being a part of this program has taken so much of the stress off of their family as well as their relationships at home. She talked about how wonderful her child is , but how stressful it is when others can’t see beyond his difficulties – at school and out in the community. Sometimes it’s hard to put on that shield that is necessary to survive others perceptions of your child, your parenting, and your life.

What became clear was how important it was for them to feel connected to the people that work with their children. They appreciate people who are willing to look beyond the diagnosis and find that unique child underneath.

Both of these organizations do an amazing job of training and supporting their staff that consists mostly of college students. Watching these young adults help these children climb the rock wall, sail down the zip line, go boating on the lake, and fish…just brings a smile to your face.

What many people don’t realize is how much thought and planning goes in to these fun activities for the children. It’s not just about having fun…which is still a really important part of it…but they make sure that they have appropriate activities that challenge them and broaden their experiences.

Quality after-school programs and camps should be creating “intentional” programming for their special needs children and adults. When the core staff is trained and well prepared…the support staff has the confidence to work with the disorders they are presented with.

Besides the creation of an amazing support network for these families, the staff develops a deeper understanding and appreciation for the children. Some of these college students will be heading in to careers such as special education, physical therapy, occupational therapy, and medicine.

These experiences impact their lives and shape the way they will approach their careers. While the news on TV only shows us the bad stuff…I see really great things happening with our younger generation when it comes to service and empathy. My daughter has been working with both of these organizations for a year now…and it has changed her life.

Within the walls of our homes, we know and experience the joys and struggles that come with our children. Having others love and appreciate them for who they are…not what they have…is comforting. To have our children encouraged and challenged just like other kids brings us joy.

Thank you so much to all of the students and young adults who spend their time lifting our children up by looking beyond the diagnosis…in doing so they lift us all up. Also to the Camp Twin Lakes staff who have been an incredible support and partner to our camp…thank you from the bottom of our hearts.