Update on My Son’s Health

Grant and I have decided to switch therapists for Tyler. We had gotten as far as we could with this therapist and have now opted for a psychologist who specializes in OCD, phobias and Tourette’s Syndrome. The doctor practices Cognitive Behavioral Therapy which has been shown to be an effective treatment for the issues Tyler has. Grant and I saw the doctor alone for a history on Tyler and then Tyler met the doctor too. His first real session starts next week.

Tyler has another diagnosis that he’s had for a while that I just haven’t written about. It was something I’ve never heard of before. It’s called Primary Motor Stereotypy . Tyler is classified as having Complex Motor Stereotypy and his symptoms include hand and arm flapping, wiggling his fingers in front of his face and finger wiggling. The movements often appear or increase in frequency when a child is stressed, fatigued, anxious, excited or engrossed in an activity.

There is no real treatment for Stereotypies and the type Tyler has usually lasts for life.

We are less than a month away from school and I really worry about Tyler being teased or bullied, whether it’s the stereotypy, the OCD or the tics. The older he gets the more noticeable these things will become as children are expected to sit still during class. In his second grade class last year the only thing that happened was that Tyler was humming and the girl sitting next to him told him to stop it.

Tyler is taking tae kwon do, so hopefully he won’t have to be a victim of bullying.

Every night I pray I have the mental and physical health to parent and support Tyler the way he needs. We think we have found him a good therapist and for now that’s the best we can do.

Tyler's idea of a perfect summer; the pool and video games!

Tyler’s idea of a perfect summer; the pool and video games!

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Contest: Win the Book “How to Be Sick”!

Recently I read the excellent book, “How to Be Sick, a Buddist-Inspired Guide for the Chronically Ill and Their Caregivers” by Toni Bernhard. Previously a law professor for 22 years, Toni got sick in 2001 with what doctors termed an acute viral infection, which she never recovered from.

When I read “How to Be Sick” I felt that it was finally a book that offered me constructive ways of coming to terms with my illnesses and limitations! Toni Bernhard’s book is Buddhist-inspired but she makes it very readable for the lay-person. Some of her chapters include “Staying Sick: This Can’t Be Happening to Me”, “Getting Off the Wheel of Suffering” and “Healing the Mind by Living in the Present Moment”. I borrowed this book from the library but this book is one of the very few ones I bought as a reference. It’s an excellent book for those who are chronically ill who are ready to come to terms with their life!

And now, you can win a copy of “How to Be Sick” from Mama Sick! The contest will run until Wednesday, July 22nd at 11:59 p.m. and there are three ways to win:

1. Leave a comment.

2. Tweet out this contest and let me know you have done so by entering again and saying something like, “I tweeted out this contest”.

3. Put this contest on your Facebook page and let me know you have done so by entering again and saying something like, “I put this contest on my Facebook”.

Therefore, if you do all three, you will have three separate entries in my contest!

Good luck!

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Congratulations Ruth Thomas, you are the winner of Toni Bernhard’s “How to Be Sick”! Please contact me by email at emilyandtylercullen@gmail.com or @mamasick on Twitter. I hope you enjoy this terrific reference!

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Book Reviews!

This post was inspired by Mama Kat’s Writer’s Workshop.

Prompt #3. Book review!

I’ve been reading a lot of good books lately, I couldn’t pick from just one so I decided to choose three that have stuck with me. My reviews come from Goodreads and I hope you will follow me on there.

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This nearly 600 page book went by pretty quick, it was that good! Born in Nigeria, Ifemelu decides to go to college in America. She soon finds out the difference between a black person from Africa and that of an African American. The book takes you through Ifemelu’s rough times, good times and her boyfriends. It does jump from past to present, but unlike some other books, it does so with ease and without confusion. I just wanted to keep reading this book to find out what happens to her and now I miss her! Highly recommended!

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I read this nearly 300 page book in one day, it was that good! The book revolves around Latino families who immigrated to America and now live in the same apartment complex. Their stories are beautiful, particularly the innocent young love story. This is a book that will stay with you for a long time. I’m going to stop here because I cannot do the book justice due to a lack of book review experience! Just read this book!

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Judy Blume’s books for children and young adults changed my life. I remember rereading several of her books and underlining the “good parts” in “Forever’! In this book written for adults, Blume writes about actual events that took place in the early 1950s in Elizabeth, NJ, where she grew up. There are many characters in this book but the book mainly focuses on Miri, a 15 year old Jewish girl who lives with her mother and grandmother and never knew her father. Although there were a lot of characters, Blume interweaves them beautifully. There are certainly plenty of twists to keep you interested and I definitely recommend it!

So that’s just three books that really stand out in my mind. I would love for us to share ideas for great reads on Goodreads so I do hope you’ll follow me!

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Results of My Challenging Week

I first wrote about this here.

Last week Tyler had full day summer camp and Grant and I decided he would spend the whole week with me since the camp’s location was closer. The week passed quickly, thankfully, and Tyler really liked his camp!

After camp on Monday I took Tyler to the pool so he wouldn’t feel like he was missing out on his beloved water slide! He had therapy on Wednesday and I told him I would take him to the pool afterwards but it was late and he decided he wanted to catch up on his video games! I was exhausted so I didn’t fight him on it!

We did have a couple of nights of trouble. I am trying to get Tyler to sleep in his own bed but lately his fears and anxiety are getting worse. He insists on sleeping with the light on and he got up with nightmares. I tried to settle him down but the sleep medication I take made me so groggy that I could barely stay awake to comfort him! I felt awful about it, but if I don’t take the sleep med I will never get to sleep and then I won’t be good to anyone.

Two days later the nightmares happened again and he wanted to call Grant so I let him. We tried using the techniques his therapist is working on with him to calm him down and they did work. But I was still very groggy. Grant was mad at me. He called me a bad mother, which hurt a lot. I believe I am doing the absolute best I can for Tyler. The next day Grant apologized.

These past two nights he has slept through the night so I am hoping he just had a bad few couple of days.

So I made it through the week! Grant and I let Tyler have a couple of weeks off from school to decompress but now we’ve got to work in speech, occupational and physical therapy activities into his day, along with reading and flash cards. Plus he is still taking Tae Kwon Do. It’s a lot for any parent to do, let alone someone who is chronically ill!

I’ve actually had a couple of bad days where on Saturday I napped for four hours during the day and on Sunday I slept for three. I can tell it’s not from depression and I worry that I am developing a tolerance to my medicine for my hypersomnolence. But it’s only been two days so I shouldn’t freak out, right?

I am not a perfect parent, no one is, and I am not a bad mother, I am a sick mother. Sometimes I have my doubts but Tyler still says I am the best mom in the universe!

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Tyler after his Tae Kwon Do tournament last week, which was a victory for him…and me!

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Looking Back

This post was inspired by Mama Kat’s Writer’s Workshop. My original post can be found here.

Prompt 1. Throwback Thursday: Choose a photo from a previous June and write a poem or a blog post.

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This picture comes from June, 2011, and is my son’s pre-school/daycare graduation picture. When I lost my job in 2008 and became too sick to work due to Lupus, I kept Tyler in daycare. I was in just too much pain for him to be home with me.

I had a lot of guilt back then, as I think any mother, healthy or sick, does when putting their child in daycare. My child spent so much time with his teachers who were Indian that he started to speak with an Indian accent. That soon went away.

My post was an uplifting one because deep down I knew there was no danger of Tyler forgetting who his mommy was, despite spending eight hours away from me a day.

I used to think, in the depths of my depression and pain, that maybe Tyler was better off with another mother, a healthier one. I think today I feel more confident in the fact that Tyler belongs with me; that although I am sick I am doing the best I can and Tyler knows it.

I look back at this photo and it seems like a million years ago. So much has changed since then including moving to Ohio and collecting disability. Tyler will be going into the third grade this year.

We had a party for him on the day he graduated and I still have the wonderful memories of my best friends coming with gifts, and the cake.

Tyler may change through the years but I will always feel the pride and love I felt for him that day.

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