Thursday, September 08, 2016

A New Blog

For awhile now, Kenny and I have pondered creating a blog where we could share our experiences around Fetal Alcohol Spectrum Disorder.  The past few weeks since returning from camp have been some of the hardest Kenny has ever had.  He has suffered from complete cognitive shut downs, a total inability to access information seemingly at random times, and a far worse functioning overall than we have ever seen out of him.

Today was a bad day...a very bad day...a break down in tears-can't explain what is wrong-nothing is working kind of bad day.  Honestly, Kenny is terrified, scared that this current "hiccup" might be permanent, afraid that he won't get back to his normal higher functioning self.  It has also shown him just how dysfunctional his brain really can be at times, and as he is a little older now he is more self aware, and that is equal parts good and bad.  

We are used to these fluctuations, these hills and valleys of functioning, often lasting 3-4 weeks and then he comes back into himself for awhile.  But this is different, and we all know it.  We spent almost an hour today at the school table with him sobbing, unable to understand what we were learning or even saying.  Absolutely nothing was making much sense.  Later, it was like it never happened, though he is not at all his usual sharper self.

Desiring to give Kenny a forum to share what this all feels like, and hoping it may calm his nerves a bit to write about it, share it, maybe receive some encouraging feedback, I decided to move forward immediately with the blog.  We hope it may help others understand the pain and heartache of walking through the world with a broken brain that works beautifully one day and totally stops the next.  Maybe Kenny can even provide insight to parents of FASD children who are younger or less articulate.  

Here is a link to this new blog.  I will be writing occasionally there, and Kenny will as well.  Kenny's posts will be uniquely his voice, unedited by me, and he will address questions, talk about his day to day life, and share his heart as best he can.

Would you consider visiting this new blog, reading his first post, and offering a word of encouragement?  I will share links here regularly to posts there, but hope you will become a regular visitor of his.  If you have a question for him, please email me at CyndiLJ@aol.com.  You can also join our closed Facegroup page for the blog where I will help Kenny address comments made there.  Here is the link to the blog:  Uncommon Noggin   and here is a link to the FB page, where we will post a notice of every blog post:  Facebook Group for Uncommon Noggin

I am going to try and keep posts here about FASD and our challenges to a minimum, and use this space more for general family updates, and not let it devolve into FASD Land.  The way things are going right now, that might very well happen if I am not pro-active.

Thanks so much for considering checking out Kenny's writing!

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