Wednesday, August 14, 2013

WHAT NOW

Last week was a difficult week. I pretty much just did the bare essentials to get by while processing that both of my children have genetic issues. I went through the anger and mourning stage. I am pretty comfortable talking about it now without crying, and I feel an intense desire to share our stories and experiences so other families out there know they are not alone.

Each morning when I wake up, I sit for a few minutes and think, "What now?"
What do we do now?

Being that I am an impatient person, I have been trying to force everything. Calling doctors and therapists and pharmacies and programs, at least twice a day. I'm pretty sure I'm at the top of some people's "Annoying Person List." But I don't really care. I want my children to get the help they need as soon as possible.

Gabriel has been cruising along these last couple of weeks. He is eating food like a champ and we are really just trying to transition him into crawling on all fours and pulling himself up on furniture. He went so quickly learning all of the other things, I had hoped he would catch on to this just as quick. Gabriel, however, has reminded me that he will do all things when he is good and ready and it is really important for me to just work with him every day.
Once pay day rolls around, I am going to purchase this book:
This came highly recommended from the Family Outreach program we are working with in town.
She brought me a copy to look through at our last meeting and I thought it would be really good for Jeff and I to read this.
We are still waiting to hear back on an appointment for Gabriel's blood test to determine if there are any deformities in his chromosomes. It takes some time to get approval from insurance companies.
 
Since Caderyn was diagnosed with mild Tourette's Syndrome, my spare moments have been consumed with reading everything I can on the disorder, possible treatments, and how to work with my child to try and contain or minimize his tics. In doing this, I have reached a number of conclusions:
 
1. I would like to get a second opinion, especially on the medication use at his age. All of my readings have stated that we aren't even in at the worst stages for Tourette's. Middle school and high school are when the tics will be at their worst. Do I want him on this type of medication right now? Would it be more beneficial to wait until he reaches this stage and try another outlet of treatment?
 
2. Another outlet of treatment I have been reading about is behavioral therapy. Here is a link to one of the many articles I have read. This intrigues me and has motivated me to talk to my pediatrician and hopefully get a recommendation for a good behavioral therapist in Montana.
 
3. I am going to buy these books:
 
 
 
4. I have also decided that I am going to be very open with Caderyn about his tics. I don't want him to stress about them, but I want him to know what he is doing is okay and that he will be okay.
 
5. We have noticed his tics become much worse when he is stressed or upset, so I have been working on rerouting Caderyn when he isn't listening, whining, or disobeying. Yelling or spanking--which I don't like-- makes it noticeably worse. I also am going to take an old grade-school friend's idea about positive reinforcement that she posted on her blog and see if this decreases his negative behavior.
 
We have gotten many kind messages and comments from friends and family. I know that we will get through this because of them. I apologize if I seem a bit more distant than usual, I've just got a lot on my mind. I would love it if you stopped by or called me up to go for a walk. I'm always up for those!
In this last week, I have become increasingly aware of how many people support and love us. This is something I am so thankful for and why I think it is important for me to continue writing. There may be a family out there who doesn't have the love and support that we do, and I want them to know that they are not alone.

1 comment:

claire - this little house said...

reading this post makes me really admire the way you are dealing with things and your approach.
what a strong family unit you are, your children have the best support which will help them face any challenges ahead.

www.thislittlehouse.co.uk