Didn't your momma tell you it wasn't nice to stare?!

Morbid curiosity is something that, I think, affects everyone. It’s only natural if there is an accident on the highway that people are going to stop and ‘rubberneck’ to see what’s going on. Hell, look at the popularity of reality TV right now. One action that always goes along with this human affliction is staring. I admit I’ve done it more times than I know or want to admit. I think it’s a normal reaction when we come across something that is out of the ordinary.

I always knew it wasn’t polite but I never put myself in the other person’s shoes. Which is ironic since I hate being the center of attention. Now, with Jacob’s disability, I find myself paying attention to the people around me more. I see the stares others level at him when we go out to eat. Or on a particularly bad tic day when he stutters.

At first, it broke my heart. He’s just a kid trying to get through his daily life and the last thing he needs or wants are people staring at him like he’s a circus side show. Then I got angry. How dare someone pass judgment on him or myself for what they perceive is ‘wrong’! A friend of mine, whose son has special needs as well, told me something at the start of this journey that has stuck with me. Our boys look like every other kid around so people don’t get it when something like this presents itself.

I didn’t stay at the anger stage very long, since it’s draining and I know I’m better than that. Besides the fact it wouldn’t do me a damn bit of good to stay mad. Even before Jake was diagnosed I refused to let him become reclusive. I know the noises are annoying and I get that they might make other people uncomfortable. Thing is, my son has as much right to go to a restaurant or a movie as the next person.

Again, I’m making concessions. We try to wait and go to the movies after opening weekend and the symphony is out of the question right now, but I won’t stop living my life or letting Jake live his. It’s a great relief to know that he’s protected by a law. Legally, he can’t get thrown out by anyone. He can be asked to leave, which thankfully hasn’t happened, but he doesn’t have to leave.

I like to think I’m sensitive to others feelings. I’m not going to shove my son’s disability in someone else’s face if I can help it. The last thing I want to do is create a scene or make him uncomfortable.

We are going on vacation in June and my biggest worry…the plane ride. When we’re out in public it’s easier to tune the noises out or for someone to get away from them. Stuck in a flying metal tube at 12,000 feet. There’s nowhere to go! I don’t think they’ll let you stay in the bathroom for the whole two hours. A friend mentioned something to me that I hadn’t even thought of though. Talk to the person at the gate and explain the situation. Possibly, they would let us board early and the noises might not be so bad if he can sit in the front. At least they wouldn’t echo up the plane for the whole ride.

It so hard to think of my son having a disability because to me he’s not disabled. He’s Jake. Yeah he makes noises but he’s still the goofy kid I love. But as my mom said, after she bought pre-boarding passes for Jake and I, he has rights and I need to use them! I’m sure it won’t be the first time that the flight crew has dealt with a case of Tourette’s. I fully intend to make sure they are aware of it so that they are prepared and can field any complaints, should it come to that. And since we’re flying Southwest they have three seats across on both sides. So someone is going to have to be able to handle it for the ride. My mom offered to sit with us but there’s no reason for her to leave dad by himself. I plan on letting whoever sits by us know and if they want to get up then I won’t be offended.

I find myself not being as curious about things people do anymore. I don’t stare as much as I used to now that I have seen how it feels. Thankfully, Jake is blissfully ignorant of it. Or he just doesn’t care. I’ll take either one at this point. Lord knows he has enough anxiety to deal with and I’m not sure either of us could handle adding more to the pile.

Our story....it's long!

Like every parent I dread fielding a call from my son’s school. Over the years it has been anything from strep throat to a broken arm and you learn to become accustomed with the ups and downs of your child being sick or injured. But the nature of my dread recently changed in regards to these calls. I no longer joke about ‘what he’s done’. My worries have now changed to what happened?

On January 19^th, 2010 the light of my life, my son Jacob, was diagnosed with Tourette’s Syndrome. Like most people my knowledge of Tourette’s was limited to adults that couldn’t resist the urge to curse. Something that was laughed at and provided entertainment. Thankfully, I was prepared before the diagnosis and had done my homework. Like Jake I am a sponge for knowledge and I now know more than I ever thought I could about his disability.

Jake was diagnosed with ADHD back in kindergarten. I have always had inkling that my son was different. He was always very spirited and seemed to have endless energy so the ADHD did not surprise me in the least. I like to think that my own mental issues that I went through as a child helped me be a little more understanding of what Jake was going through.

I refused to start Jake on stimulants right off. For me that was something big because I consider myself a passive person. I don’t usually question people, especially authority figures but I did the doctor. He warned me that they might not work but I was determined to try them anyway. While they may not have totally ‘fixed’ the issue they allowed Jake to function during school. I told myself that I could deal with the effects of his condition in the evening as long as the medicine provided him some focus during the day. And it did just that until fourth grade.

Jake took Straterra for almost five years which is significant. It doesn’t work for most people and I was very happy we were able to stay off the stimulants that long. But it came time to try something different and I did my research. I didn’t want him to be a zombie. I wanted him to be Jake, even if he did drive me nuts sometimes.

We switched doctors after the previous one had told me that he wanted to try and take Jake off the drugs during the summer. There was no way either one of us would have survived a week, let alone a whole summer. We’d be locked up in the looney bin before you could say ‘Bob’s your uncle.” I decided then that my passive nature was not doing Jake any good and changed doctors. I’m very glad I did.

It always pays to be educated when you go in. I’m a relatively intelligent person. (Ok, you can stop snickering now.) I was biology major in college so I get a lot of the lingo. I also used my friends as a reference since quite a few of them have their own issues that were similar to Jake’s. But everyone is different and I knew that it would take a while to find a solution that fit us.

Thankfully we ended up with a great doctor who was very receptive to my opinion and appeared to be knowledgeable for the most part. Jake and I both felt very comfortable with him and thus started the trek to find the ‘right’ meds. (I promise, I’m going to get to the point soon.)

Like I mentioned before, I did my research. What little I had known about ADD and ADHD comes from the minimal exposure I had with it in the 80’s. Ritalin was a nasty thing back then and I was determined that my son would not go through that. He has so much to offer and to drug him up until he was a shadow of himself was not something I was prepared to do. We would start a medicine that would work for awhile but then I would start to see holes or gaps where he needed it the most. I had to again decide what was more important. His time at school or his time at home. The answer was the same as before and we seem to have found a medicine that works for the most part.

I am not an observant person. I’ll just be honest right now. I have the ability to tune things out like nobody’s business and as a parent I utilize that ability with Jake. It’s a survival technique I think. So I don’t exactly know when the tics started. I only know when I first started noticing them.

Fourth grade was a crucial year for us. It was when we started on the stimulants and when the noises started. They were so subtle at first I don’t’ even remember exactly what they were. I just remember they were there. But tics are also side effects of stimulants so that’s what I thought they were. Oh how wrong I was.

I have to tell you how thankful I am for Jake’s school. The staff has been nothing but understanding and loving of Jacob even before we knew what the tics really were. They went out of their way to work with me and make Jacob feel like a normal kid. It helps that he’s so loveable and charismatic that you can’t help but want to help him. (I’m not biased or anything.)

His classmates ignored his noises for the most part. There were days when they would bother them more than others but I believe that they probably noticed the tics before I did so they were used to them. His teacher even commented on that during one of his conferences. We had no major issues and I had hoped it would continue that way.

It was sometime in the summer of 09 that I started to notice them more. They were still sporadic and spaced out enough that most people would not have noticed them. But I did. I decided to ride it out for a little bit, thinking that once we finally settled on a medicine they would lessen. We have switched to three different meds in a four month period.

My eyes were finally opened in October of 09. Jake had thrown up at school and we later found he had the flu. There was a sub nurse in the office and she greeted me like any other parent and told me what was going on with him. Then she socked me with it. “Does Jacob have Tourette’s?”

Such a simple question that would get the wheels turning in my head. My answer was the one that I always gave. “No, it’s just a side effect of his medicine.” I firmly believed that is what it was at the time. But her question had caused me to wonder and being the inquisitive person I was I went home, got Jake settled and jumped on the internet.

Now, when you’re kid is sick the internet can be your best friend or worst enemy. I have a habit of thinking the worse when Jake is sick. I’m sure I’m not the only one and I try to suppress that urge as much as possible. I plugged Tourette’s into the web browser and for the next two hours I got me some education. =)

I was stunned with what I read. There might as well have been a picture of my son next to Tourette’s in the dictionary. Now of course, I’m not a doctor so there was still a chance I was wrong. But the more I read the more convinced I was. I found a list of common verbal and physical tics and made a list. He had numerous vocal and had started to exhibit the physical ones.

My son had Tourette’s.

I talked to a few people and even Jake’s teacher and the nurse and it seemed we were all agreeing. But the final decision would lie with the doctor. We went to see him at the end of December and I told him about my thoughts. He simply smiled at me and proceeded to set up an appointment with a pediatric neurologist. He never confirmed what I thought, but I could tell that he agreed. I felt relief finally. An answer!!!! Even though I didn’t know for sure yet I had felt a little bit of a lifting of the burden on my shoulders.

I called to make the appointment with the neurologist at the children’s hospital. But they told me it wouldn’t be until the end of March and that it wouldn’t even be with who my doctor had referred me to. Thankfully, I had talked to a mom of one of Jake’s classmates a few days before. She gave me the name of another pediatric neurologist in the area that believed if you had a problem, then you needed to see him sooner rather than later.

The disappointment I had felt at having to wait had suddenly swung to excitement again. I called on a Friday and was given an appointment for the following Tuesday. A solution, or at least a step closer to a solution was on the horizon and I was thankful. I knew nothing would change right away but to have the ability to tell someone exactly what was wrong would be a relief.

It always sucks going to a new doctor’s office. =) You have to put your life history down and if you’re doing it for your child they sometimes ask about their early development. People, I’m lucky if I remember what I had for lunch yesterday let alone when my child lost his first tooth or if he walked early. But after filling out the mountain of paper work we went in and answered even more questions.

I didn’t mind answering if it got me closer to the answer that Jake and I were so desperately seeking. We saw the nurse practitioner first and then the doctor. The words ‘your son has Tourette’s’ were never really uttered. The doctor just smiled at me and launched into telling me what it was and how it worked. Then briefly discussed how it was usually treated. As always, each child is different and we would have to find the route that worked best for us.

Walking out of the neurologist’s office I felt lighter than I had in a while. Jake of course moved on in his typical way. He wanted to know what was for dinner and wanted to go back to being a kid again. I imagine he was just happy to have an answer too.

I went home and shot an email off to the staff at school about what we had found out and what the course of action we would be taking was. Naively I thought the hardest part was behind us.

The next day was the day from hell. For both of us, but especially Jake.

I sent him off to school like always and went to work. Later that afternoon I received an email from his teacher. Apparently, there had been some issues with other 5^th grade students in band. They had been giving Jacob problems about his noises and he came back to class sobbing. His teacher finally calmed him down and got the story of what happened. She told me that she got the students together and talked to them about the situation and had resolved it. I had no reason to doubt her and I knew it would be the topic of conversation on our drive to grandma’s that night.

When I went to pick Jake up it was worse than I feared. He was still upset and the tics were out of control! He could barely get a sentence out because of them. When I found out the rest of the story I was not a happy camper. Twice that day he had been put on the spot about his tics.

By teachers. I told Jake I would take care of it when we got home. When we sat down to watch tv and visit with grandma that night the tics did not decrease in severity. I just blew it off until Jake looked at me and asked me to make it stop. If you know me then you know I HATE to cry. I despise it. But I wanted to sob in that moment. The only thing I could do was assure him I would talk to the principal and let her know what had happened.

I wasn’t worried that it wouldn’t get taken care of. On the contrary, I knew that the principal would do exactly that. What sucked was having to wait until the following morning to get a response.
Patience is not one of my virtues and when something is wrong I want it fixed then!

I didn’t have to wait long until I got a response the following morning. She assured me that she would talk to the teachers and that it would be taken care of. Jake didn’t even want to go to school that morning but I told him it would be ok. So he begrudgingly went. It helped that he loves his teacher so much. =)

What I didn’t expect was a call from the school counselor that morning. She wanted to run an idea by me. It was an awesome idea too. She wanted my permission to speak to Jake’s class about his disability. She thought that if she and his teacher explained it to the kids then maybe it would make things easier on him. I, of course, had no issue. My only condition was that she run it by Jake first. He was the one that had to be with these people five days a week. If he was comfortable with it then so was I.

It turned out to be a great thing. They likened Tourette’s to sneezing. You can’t help it when you sneeze. You just have to. Well, Jake’s noises were like that. He couldn’t help the noises he made but he was still Jake.

A friend had mentioned a Hallmark movie to me when I had talked to her about Jake’s diagnosis. I hadn’t heard about it but decided to check it out. His teacher then mentioned the same movie to me so I decided to find it and buy it. If only for Jake and I.

I bawled during the movie. Sobbed at one point. Jake watched it as well and in his typical way didn’t say much but said he enjoyed it. I’m sure he processed it on some level but I wasn’t too worried about it. We had become experts on Tourette’s in a short period of time. What really made me happy was the enthusiasm his teacher took about his condition. She was adamant about showing the movie to her class and talking with them about it. Even going so far as to suggest the whole 5^th grade watch it.

How blessed we were to have educators that didn’t want to push his disability to the side. They wanted to embrace it! I told Jake this was his opportunity to educate his classmates. Take advantage of it. Make a difference.

I’ve tried to approach all our difficulties with a positive attitude. Not only for Jake but for myself. It makes things so much easier to deal with. We have our days of course. It’s exhausting at times but much better than the alternative.

I’m starting this blog as a form of therapy for myself. I don’t have an aversion to professionals, but my experience over the years has taught me how cathartic writing is. It’s a quick way of relieving my stress and getting all the junk out of my head.

I consider Jake and I to be very lucky to have been blessed with friends and family who love us unconditionally and are understanding. Though it’s hard for me to ask for help I have gotten better at it and it does help to know that I have a support group at my disposal. We are equally blessed to be in a school that has also been supportive. I don’t know what I would do if they weren’t. Things would be ten times harder at least.

My posts won’t always be this long and probably won’t be frequent. I’ll write when I have something to say. Like I said, this is for me and no one else. I know I’m not the only one out there who is going through this or feeling this. I just hope that others are as lucky as Jake and I to find some sort of support for the troubles they are going through.

~Christin~