Tuesday, October 22, 2013

Feeling Defensive

B is doing good. His ticks were "almost" non-existent throughout the summer. However, school started, sports started, weather turned colder, allergies flared up, etc. etc. and something or a combination of somethings has caused him to start ticking again. It's not terrible. It's not something that everyone notices and focuses on. But it is something that some people and kids have noticed enough to say something to him about it. That bothers him. It is bad enough some days that he complains about it, or it even effects his school work. He will tell me that his eyes are just so tired, or he couldn't stop blinking, or turning his head, etc and he couldn't think because of it. Poor kid.

I know he is not as bad as many others with tourette's. I know his case is mild and it could be so much worse. But that does not diminish the fact that he struggles with this on a daily basis. It does not diminish the fact that he suffers because of it and we, his parents and family, feel helpless and would give anything to make it all go away.

A parent at the school noticed B blinking a lot. She asked him "do your eyes hurt?" Being a little embarrassed, he said "no" and ran off to play. She then turned to me and said "you should get his prescription checked, maybe he needs new glasses. I replied "Well, he actually has tourette's" She said, "Oh! How did you learn that?" I then proceeded to tell her our story to which she responded, "well, at least its not a big deal for him." ....... There was a long pause as I pushed back all the things that came to my mind to say that would not have ended well and I finally said, "some days it is". She then tried to backpedal and was just digging herself a bigger hole. She tried to say that at least he doesn't shout out random words and isn't a "nuisance on society". What the?!?!?!?!?!?!?

First of all, we don't know how bad B will get. He may stay at the "mild" level (we hope!) or his TTS may progress and get worse and worse. Once children hit puberty it usually escalates and by age 14-16 someone with TTS is about as "bad" as it will get. What if B does get "that bad"? Some people, like this woman, would think of him as a "nuisance on society"?! And to look at B and say its "not a big deal" for him is like looking at a paraplegic and comparing him to a quadriplegic and saying "its not a big deal for him, at least he can use his arms". Each trial is extremely hard and related yet different. Each person has to learn to deal with their unique circumstances the best they can and that in itself is a trial. Just because our son's ticks are not as noticeable in a room full of people and he isn't having full body spasms or shouting out random words, does not mean he doesn't struggle with his TTS on a regular basis. He is still self conscious of them. They still exhaust his muscles and his mind. And it is still very very hard as a parent to watch your child go through this and there is nothing you can do to take it away and make it better!!!!

I wish I could've said, "everyone is unique, we all have trials. B's trials are many. We count our blessings to have him with us because he was so premature that he almost didn't stay. I will take B and his tourette's and his allergies, and everything about him good and bad, and be grateful for everyday. I don't know what trials you or your children go through and would never suppose that your life was "easy" because no one's life is. I would only ask that you pray for our B. Please understand that he is unique just like every other child on this playground. He is very "special", both in what he struggles with, and in his many talents and amazing qualities. We take good care of him. We do not focus on his challenges yet are constantly mindful of his special needs. We treat all four of our children the same and love them equally. To assume you know enough to judge someone is just not a good idea."

But I didn't. I simply turned to her and said, "I don't see nuisances, only blessings." She looked at me and said, "ya, you're right. I'm sorry."

So in the end I am glad that I "thought before I spoke" and held my tongue. It is the hardest thing to do when your feeling defensive, especially about your child!

Saturday, March 23, 2013

Trials in Parenting and the amazing Brad Cohen.

A friend of mine sent me this link to watch a trailer called "Front of the Class". It is a Hallmark movie about a man with Tourrette's Syndrome  It is a true story of Brad Cohen who becomes a teacher! (I have attached the trailer at the end of this post.) As I watched it I was silent, I felt great admiration for this young man as he faced his disease with strength, courage, and a beautiful smile, I was also feeling sorry for him as a boy, feeling angry at his teachers for being mean to him and not understanding, feeling upset with those who were refusing to give him a job because of his tics. Then one scene sent me into sobs...literal, body shaking sobs... I tear up now as I even type about it. It is a clip from a scene where the dad yells at his son and tells him to "stop it!" Then you hear the man's voice, "I couldn't really blame dad for losing it. My tics drove him nuts." Such understanding! Such compassion this man has his for his father. Such a hard life as a child! 

I felt like I could relate in a tiny way. I have dyslexia. However, we (my parents and I and even teachers) didn't know this about me. I would study all the time. Often staying up with a flashlight and my text book under my covers so I wouldn't wake my sisters who were sleeping in the same room. I would ask for help, I would work so hard. All to barely pull off "C's" if I could. I was called stupid and lazy by everyone. They didn't understand. I started to believe I was stupid. I knew I wasn't lazy, so that left stupid, really stupid. I had the lowest self esteem and those feelings have taken so much from me. It wasn't until my senior year in high school that my history teacher figured it out. I was diagnosed and learned how to deal with it from a special counselor when I was in college. And what do you know? I got A,s and B,s all through college! Of course I still struggle, I always will. But as I was watching that trailer I started sobbing for two reasons. 

The first reason was because I felt I could really relate to this young boy and felt his pain. But the second reason and the more powerful one was, "I NEVER ever ever ever want B to feel like that!" I was overwhelmed with "how do I raise him?" I know what its like to be mocked and even yelled at for something that is not your fault and I never wanted anyone, especially my husband or I, to do that to our sweet B.

I will say that B is no where near the degree of tics that this man was in the movie. But there are many things B does that if he was a "normal" child I would be reprehending him for. There are many times when I have to exercise more patients with him. It is hard because some of the things I need to be patient with B for but if his younger brother, A, does the same thing I need to tell A that its not okay. Then that is just confusing to a 4 year old. Why does my 7 year old brother get to spin down the hall at church or jump up and down while I am holding mom's hand and she is talking to someone, or whatever, but I cannot? It has to be so confusing! 

This is my struggle right now. How do I parent these children when one of them has TS? Our older two children, N (14 year old son) and T (almost 12 year old daughter) are older and thankfully they understand. They get it and are very sweet and understanding... most of the time. But even then I have had to remind them to be patient with B and remind them that he cannot help it. I have to be understanding with the older two because they are not intentionally being "mean" or "bossy", it is just a natural thing to want to tell a kid to "stop it" when they are seeming so hyper and out of control. It can be "annoying". But I hate that as well. And how do I help the youngest, sweet A, understand that his older brother cannot help it and even though he gets away with doing certain things it is not alright to do them too. 

And B, he is the one I worry over the most. How am I suppose to know what is always a tic and what is a 7-year-old-typical-boy-behavior that needs to be corrected? When do I correct him? How do I correct him? I want him to grow up to be a kind, smart, responsible, talented, thoughtful, considerate, successful man someday. I want him to continue to develop social skills so that he will continue to be liked and have friends and have a happy life. Our B seems to be loved by everyone! It is amazing to watch that kid make friends and to watch how people, young and old, just love to be around him. He radiates joy! And I think that is a great blessing that his Father in Heaven has given him to help him not only "through" this trial but also to "thrive" through it. 

It is hard though. I never thought that I would have to second guess every parenting decision no matter how small. I just really hope I don't mess this up... for any of our four children. I love them all sooooo much!!!

Here is the trailer:
Here is a neat CBS story on it which shows the real Brad Cohen and talks about his mother. I wish I could talk TO his mother!

Friday, March 1, 2013

Information is good.

Most people do not understand what Tourette Syndrome is. Here is a great site that explains it for kids.

Wednesday, February 27, 2013

How to explain?

B has been noticing his tics. The other day he told his teacher "sometimes I blink a lot, or bend my head, but I can't stop". Oh, heartbreaking!

So I will be talking to B about his TS soon. He is such a strong young man and I know he can handle it. I was just hoping we could keep it from him or a while.

But why? Why would I want to keep this from B? Is it to protect him? Is it so he doesn't FEEL different? Is it so he will still be the outgoing, ambitious kid he's always been? Is it so he doesn't use his TS as an excuse not to succeed and to not do his best? Well, honestly, yes! All of the above! As his mother I want to protect him. Honestly I wish I could take this away from him completely but I know I can't. So instead I thought I was protecting him from... Well... from himself if I truly look at my actions.

Does that make me a bad mother? Maybe. But I know now that it is not right to hide his disease from him. It's not right to try to "sweep it under the rug" until he's old enough to pull up the rug himself.

So I will be sharing with Ben what it is that he is dealing with. I am going to tell him "its" name, explaining what it means to him and his life. Letting him know that this will NOT hold him back. Let him know that this does NOT make him any less amazing. Let him know that this is a challenge and it is his job to rise to it and to overcoming it. No, it won't go away, but it WILL make him stronger!

I found this great story online that I will be reading to him. http://tsa-usa.org/imaganw/Toby_final.pdf
I also found a newsletter, including several past newsletters, called "That Darn Tic". It is by kids, for kids with Tourette's. I think it will be good for B to read about other children with TS. They can be found here: http://tsa-usa.org/Publications/ChildrensNewsletter/athat_darn_tic.html

I also found a great site for my husband and me as parents! http://tsa-usa.org/aPeople/Parents/parents.html Of course I wish this wasn't something I had to do, but I am so grateful for this new found resource and am excited to explore all the information.

The Letter

Welcome to my new blog. I have started this blog for a few reasons. First of all I needed an outlet, someplace where I can freely express my feelings and thoughts. "Why not in a private journal", you ask? Because I am hoping to be able to connect with other parents, get advice, and maybe my thoughts and experiences with help others along their way as well. Please feel free to leave comments, to share this blog with your friends, etc.

To start us off I am sharing the letter that I wrote to our family and friends explaining about our son's new diagnoses of Tourette's Syndrome. He is our third child, an amazing 7 year old! I have shortened his name to "B" because this blog can be read by anyone and I want to protect his privacy.

Dear Family and Friends,

We have recently discovered that our son, B, has Tourette Syndrome. Here is a website if you would like more information about TS: http://www.tourette.ca/learn.php 

B is currently displaying several tics; eye blinking (simple motor), bending his head down, opening his mouth, and rubbing his chin on his chest (simple motor), gulping noise with his throat (simple vocal), jumping (complex motor), and interrupting or blurting out what he's thinking (complex vocal). In the past he has also had a throat clearing tic and a sniffling tic that may or may not resurface.

B's tics will worsen if he is stressed, excited, or tired. Also random things can bring on a tic. For example: if he is looking at you in the eyes as you are talking with him and you blink and he notices that then his blinking tic may start up.

Tourette Syndrome usually worsens throughout childhood, peaking in the early teens. Then they usually lessen. This is usually because as they get older they are able to control the tics better. 

There is medication for TS, but because B's tics do not alter his life or interfere with anyone else's we are choosing not to medicate him at this time. We also do not want to run the risk of side effects from pharmaceuticals. We will be doing some therapies at home with him and looking into essential oils and other natural treatments. We will also be seeking additional medical advice but are waiting to see what will happen with medical care and insurance in the country. 

We are letting you know this so that you can be patient with him and recognize his tics as being a medical condition, not B being disrespectful, rude, or hyper. If you notice another child giving B a hard time about a tic, please help that child understand that it is not B's fault. Also, if you happen to notice something that may be a new tic, you can let us know about it and what was going on when it came about. Like most TS patients his tics come and go and he can go quite a while without experiencing any. Right now, however, he has been doing them quite a bit. We think that may be due to all the Holiday excitement.

We have a friend who is a successful adult with a beautiful family and he has Tourettes. I talked to him in length about it and he helped me to understand many things about TS. One thing I will pass on to you is that tics are a lot like an itch, or sneeze. The more you try to not itch it or try not to sneeze the worse the urge becomes and you know it will feel better if you just do it. 

We are not going to be telling B about his this yet. We do not want him to think he is any different from other children. We want him to make goals and reach for dreams as vigorously as he always has. As he gets older and more aware of what his body is doing we will, in our own time and in our own way, tell him. That may be a year from now, or when he's eleven. Our older children do know. 

This has been hard for me as his mom. I was sitting in church a couple weeks ago and I was thinking about sweet little B and all he's been through in his short life and I thought to myself, as I choked back tears, "what more does my son have to endure? when will it be enough?" Instantly the words came to my mind, "That's what Mary asked." Wow! I was quickly humbled. I know that Jesus suffered and endured all so that he can be the One we can always turn to for solace, support, and strength  I know our Savior loves B and will be B's strength. 

I know this will be a challenge for B throughout his life. But it is a challenge that his Heavenly Father has given him to strengthen him and to strengthen us. We will all grow and become better people for knowing B. I believe he will grow up to live a long, successful and happy life. I have faith that Heavenly Father has a plan for us all and that plan has been in place from the very beginning.
I have another story to share about B. When he was a few months old I was standing in the checkout line at a grocery store and a tiny little elderly woman came up and looked at B with wonder in her eyes and said, "Oh my, that child has such a wise soul, you are so blessed to be his mother." She gently squeezed my arm and walked away. I was humbled then as well. I am so very blessed to be B's mom. All of our children are such blessings and I am so grateful for them! 

Thank you for reading this and thank you for your support for our family!