Tourette Syndrome Awareness Month is finally here!

Tourette’s Syndrome Awareness month is finally here!! Today Kane and I will be speaking with his class! Also, so many amazing supporters in our community as well as surrounding communities will be wearing teal to show their support for Kane and TS Awareness!

So if you’re reading this, would you #weartealforkane?! 🙂

 

A blessing of a T-shirt for TS Awareness Month!

Kane is finally starting to come out of his shell and feel comfortable in his own skin. I have watched him grow and blossom over the past year, and I am so proud! He has become more vocal in school, raising his hand more and getting more involved. He has turned into such a chatter box. His family and I are so proud of him and how far he has come! 

Kane is also so blessed. He has so many supporters in our community! One of his supporters is selling the shirt below on Kane’s behalf for TS Awareness Month! He is going to be so surprised and excited! Thank you again!

Kane is a TS superhero!

This is Kane! Kane is 10 years old from Murray Iowa. Kane is a loving child who enjoys helping other people! Kane and I have had quite the journey together! I was only 18 when I gave birth to this amazing young man! God blessed me with such an amazing son!

He was diagnosed with Tourette when he was 7 years old, after we noticed he was making movements and noises that were out of his control. He has vocal and muscular tics. Kane also lives with OCD, generalized anxiety, social anxiety and Impulse control disorder. Fortunately we live in a small town filled with supporters! Kane has a wonderful small class at Murray schools and his teachers allow us to celebrate Tourette Syndrome Awareness month by bringing in ribbons and snacks! Kane is able to teach his peers the ends and outs of Tourette! Kane has reached a major milestone this year!!

For the past couple years, he had been seeing a psychologist, biweekely. As of January of this year, he is no longer needing therapy!! He is a spontaneous little boy who enjoys riding his four wheeler and bicycle with his little sister! He will be participating in baseball this summer! His family and I are so proud to call him our superhero!

You can follow Kane’s story on his Facebook page here: https://www.facebook.com/awarenessforkane

The OCD of germs

Kane has a way of remembering every detail of every situation, good or bad. This affects him within his life, day in and day out. For instance, this morning he told me he was cold so I reminded him there was a blanket on the back of his chair. He would not use it because Kenzi sneezed while using it last week. I told him I had washed it after that and it was fine; nope, not going to use it!

Yesterday, we were outside. He asked if I would please get him a drink since he was on the trampoline. He would not use the cup I brought him because a long time ago his cousin drank from it and she was sick. I explained it had been washed several times and it was fine; nope, wouldn’t use it!

He remembers if anything at one time has been “unsanitized,” according to his mind; therefore, will not use them. I try not to get aggravated because I don’t know how he feels, or what is going on inside his mind. At times I find myself having to take a deep breath! 

Self-control is very difficult with Impulse Control Disorder

There are things my son says and does that are out of his control. I only wish more people would be understanding of this, especially people that he is around almost daily. Not only is he living with Tourette Syndrome, he is also struggling with other underlying disorders, one of which is Impulse Control Disorder.

Within his impulse control, he may say things at the wrong time or make a joke at the wrong time. Inside his mind, these are totally acceptable. He may call someone a name — “stupid” or “idiot” — and not realize that it is going to hurt their feelings. He may burst out with anger saying things that are really offensive toward those he loves and later apologize because he realized his actions have hurt someone.

He has a lot of anger built up every day, and he has no idea how to deal with it other than letting it out. He has gotten so much better at releasing it through stress exercise; however, nobody is perfect. So I ask that, if anyone who is around a child like Kane hears this, or sees the rage, please understand nobody but that child knows what is going on inside.

I love my little stinker to the moon and back! 

Fighting fear

I took Kane and Kenzi to a carnival last night at the school where his father and I graduated from. Kane was excited all day to go. When we got there and he saw the amount of people, he began to panic. He wouldn’t play any games, go in any bouncy houses or leave my side. He began to have a panic attack in the gym when he noticed a lady watching him have a tic. I tried to encourage him to look beyond all the people and have a good time, he tried but couldn’t do it. Watching him like that broke my heart!

Below are 8 Steps for Helping Your Child Overcome a Fear, by Kate Kelly of Understood.org:

Fears are a normal part of childhood—and so is learning to overcome them. But kids with learning and attention issues may have more fears than other kids do. They may worry about failing at school, about not fitting in with other kids, about what the future holds for them or about problems that relate to their specific issues.

Kids with learning and attention issues may also have more trouble overcoming their fears and need extra support to do it. But as a parent, there’s a lot you can do to help your child get past her fears. Here’s a step-by-step plan:

  1. Be a good listener. Ask your child to tell you exactly why they are afraid. Putting their emotions in words makes them more manageable.
  2. Take the fear seriously. Saying, “That’s silly” won’t convince your child the’ll get into college. But it may make them reluctant to open up.
  3. Don’t let your child just avoid what they fear. It may seem easier, but it just reinforces their fear and suggests they can’t master it.
  4. Send the message that they can overcome this fear. Tell them it’s OK to be afraid, but they’ll get through this and you’ll help.
  5. Ask your child what might help. Brainstorm ideas. If they are afraid of attending a party, perhaps they can go with a group of friends.
  6. Help your child take small steps. They might practice for a sleepover by spending a night in their sibling’s room or the living room.
  7. Make contingency plans. Brainstorm solutions: “If I get lost on the field trip, I’ll text my travel buddy. Or I’ll find a museum guard.”
  8. Let your child know you’re proud. When they face—and survive—something they feared, they’ll gain confidence that they can handle other fears, too.

Ask questions … don’t be ignorant

As a mother of a child with Tourette’s Syndrome, I find myself asked questions a lot about Kane, his tics and methods that we use to help him. I love helping people to better understand Tourette’s; however, there is always someone who tries to disprove TS or to try and weigh in an opinion when they have not done their research.

Today, I was faced with this. I have been Kane’s mother for 10 years — I know this child better than anyone else in his life. I know what tics he has, how he acts when he is having a rough day and when he is being a total stink pot. To be approached by someone who tries to make me feel less educated than they are and throw out words they do not even understand about a disorder they know nothing about, really gets under my skin.

If you are not sure about the syndrome, ask questions, I would love to answer them the best I can. After all, I have done many hours of research, lived with an individual who is affected by TS and been to many sessions with my child. Please, don’t be rude! 🙂

Answering your questions

I have received some messages filled with questions! I appreciate all the questions and the supportive messages sent on Kane’s behalf!

I was recently asked, what is it like to live with a child who has high anxiety? Well just like anyone else, the attitudes will differ depending on the day. We monitor everything that Kane watches; we found out recently that if he watches something that may be a little scary, it has to be in the morning if at all (Like Goosebumps).

Neither of my children are allowed to watch any movies that are not an appropriate rating for their age groups. When Kane does watch something that is a little scary for him, it will usually send him into a anxiety attack before bed, when his mind is racing and thinking of everything he had done that day. Sometimes the anxiety attacks are every night and sometimes they are gone for days. It all depends on Kane and the amount of stress him mind is under.

Another question that was asked is: How often does Kane have tics and when do they seem worse for him?

Kane has tics everyday, there is not a single day that he does not have a tic. Some days will be better and of course some will be worse. Kane went through a tic a couple weeks ago where he was holding his breath and sucking in his stomach at the same time. This would happen 20-30 times a day, resulting in his stomach muscles hurting. This particular tic has slowed down and now he only does it maybe 3-5 times a day.

Tics are better post-Christmas

Kane’s tics have been a lot better since we have gotten over the excitement of Christmas! He has been busy playing with all of his new things! He is into MineCraft big time right now and loves spending his time reading about it and learning more on how to build and construct things inside his world.

He has been using these buildings that he builds to help ‘control’ and ‘focus’ on controlling his rage and his tics. He uses the focus point of “GlowStone Castle” as his happy place to go when he is feeling upset. This has helped with him so much.

Sometimes he goes in my bed, gets under the covers and calms himself down while creating the world inside of his mind. Some may think this is silly, but for Kane it works great! Especially for those days when the anxiety attacks are happening a lot!