Surgery finally a go!

It's only taken a little over a year but I finally have a date for my jaw surgery.  I have what the doctor's think is fibrous growths bilaterally in my jaws which are causing havoc with my titanium jaw joints.  I have been in a lot of pain and on medication during this entire process.  The surgery will be to remove the fibroids,  as well as to determine if any of the screws have come loose. I can hear squeaking in my jaws when I chew.  If the screws have come loose and can't be tightened they'll have to remove the joints, wire my mouth shut and have custom made joints constructed for me.  That is a minimum of a six week process.  I'm praying it's just fibroids.  In the mean time I have one more appointment for pre-op testing and then off to the real deal.  By the way, the surgery will be done in Oklahoma City, over 100 miles away because there aren't any qualified surgeons in network with my insurance company any closer to home.  A bit of an inconvenience when it comes to pre and post-op appointments.



In the meantime I'll continue working on my book (I don't have to talk to write the book) and getting closer to finishing my manuscript and having it ready for proofreading, editing and finally going to print.  In a previous post I have given you a glimpse into the book by posting my rough draft of the prologue and a link to where you can become a part of this process.  I come on bended knee pleading for support on my project.  Any support, regardless of the amount, is greatly appreciated.  Here's the link again to make it even easier for you,  http://www.kickstarter.com/projects/1596973182/jeremiahs-journey-a-book-on-an-autistic-boys-journ


Blessings,
Win

Prologue to Jeremiah's Journey

As promised in an earlier post here is the prologue to my book, Jeremiah's Journey, Gaining Our Autistic Son By Losing Him to the System    I hope it gives you some insight into what the book is about.

“What is he doing right now? What is he feeling?” I asked myself while envisioning him sitting on a chair waiting for his mom and dad to pick him up. All the while he knew they said they wouldn’t, but there was always a chance. Did his head turn to the door each time that now familiar noise sounded beside him? Was he pacing and stimming as he does when he is stressed? Did he hate us? What was he thinking? How did he feel?

The uncontrollable tears, inconsolable sadness and feeling of being a Titanic sized failure as a mother flooded my soul as I watched the minutes draw closer to 5:01 p.m., the time I had to let go of my son. The time I had to abandon him. How could I, a devoted, loving mother, take such a drastic tough love step? How could I not take this agonizing step to get him the help he needed? He had reached the stage where we couldn’t handle him anymore and his outbursts had become more violent.

What did we miss while he was growing up? Was there another doctor my husband and I could have taken him to for more tests? Was there a new treatment that we missed while searching for information on the web? These are the type of questions the parent of a child on the Autism Spectrum ask themselves most of the time.

Our story doesn’t start here. I’ll need to catch you up on our roller coaster ride to that fateful day in January 2009.

If after reading this prologue you feel inclinded to support my efforts to bring this book to print I encourage you to visit Jeremiah's Journey, Gaining Our Autistic Son By Losing Him to the System and consider becoming an active patron.  Any and all pledges are greatly appreciated and an answer to prayer.  Thank you for your precious time and consideration.

Win Quier

Click to Help Treat Autism

I ran across two websites where you can click to give your support.  Your click counts towards help in treating those with Autism and cancer in children.  It is FREE to click and there are no strings attached.  I click daily to support those who are interested in helping the Autistic or child with cancer and their families.  Here are the links.  Please join me in the simple act of clicking to make a difference in these children's lives.

  Autism Help and Click to Give

Our Peaceful Thanksgiving and Avoiding Holiday Meltdowns

We had a very peaceful Thanksgiving Day.  It was just the three of us and that was perfect.  Joe went to pick J.jay up while I got the bird in the oven and started on preparing snacking foods to tide everyone over until The Meal at about 3:00 p.m.  I don't know what got into me but I had purchased a 20 pounder for just the three of us.  Thank heavens Joe watched a video on youtube on a simple way to carve the turkey and he wound up deboning the entire bird.  What an easy clean up after the meal.  I've now got premeasured packages of turkey labeled and in the freezer.  I brined our turkey for twenty-four hours and it made a huge difference on the juiciness of the white meat.  I think this will be a standard practice from now on.  Having a Butterball helped also. 

J.jay spent about eight hours with us and we enjoyed each other's company.  No arguments or hurt feelings which can be so normal on holidays.  Quiet, peaceful and thankful...our 2011 Thanksgiving to remember.

Having a member of the family on the Autism spectrum means that holidays can be stressful.  Having Thanksgiving rituals can be a way of avoiding them.  Most ASD people live a structured life with as little choas as possible.  Making your holiday as less chotic as you can will reduce and potentially eliminate a meltdown.  Have a routine, include them with duties within their skill range.  If you have out of town guests this too can upset the applecart in an ASD child's life.  Talk to them in advance. show them pictures and maybe let them talk on the phone to the family and friends coming.  Make a special effort if they are going to sleep over.  By telling your child the possibilities you'll take the scary aspect away from unfamiliar people in your home...a break with routine.

J.jay has reached the age and the stage where we don't have to pre-plan as strict as we used to.  It's a blessing to have your ASD child at home celebrating a holiday without any meltdowns.  Yes, we had a peaceful Thanksgiving this year, the first in a long time and the first of many more to come.

He's 18...Now What's My Function?

My son turned 18 recently.  Being a milestone birthday was not only important to him but to his father and I as well.  How has our part of being the parents change?  How closely do we monitor his actions?  How big a part do we continue to play in his life?  All good questions and just a few of the ones that have been playing over and over again in my mind recently.  I haven't come up with many concrete answers but I do know this for certain, I am his mother and I'll continue to play a big a part of his life that he will allow.  Although he is 18, emotionally he is quite younger due to the Autism and he still needs guidance making major decisions.  My prayer is that he will remain open to our suggestions and turn to us in times of need or when he gets overwhelmed.

He lives in an apartment now and is doing quite well.  He's receiving SSI, Medicaid, food stamps, bus tokens, vocational training, and support from at least three organizations that meet with him weekly and continue to teach him life skills.  We fought a hard fight (that's another long story that will be coming out in book form soon) and we lined up the benefits he needed to live a self sufficient life. 

With all this lined up for him why should I be worrying?  I'm his mother and it's one of my privileges.  What if we missed something?  What if he needs additional services?  Well, we'll have to take that one speed bump at a time.  I could play the 'what if' game all day long and it doesn't change things...we have done what we could, with what we had, when it was needed.  Sometimes it was heartbreaking and others just tedious but always essential.  For our mental health's sake we need to realize that we did what was necessary for his well being.  We can't second guess what has already taken place.

The moral of this life journey?  Do what you have to, but keep your eyes and ears open to new methods and programs.  Your child's life story hasn't been written in stone yet.  Investigate and listen to the voices of the parents who have traveled this road before you and the professionals who have your child's welfare in mind.  There's no good in repeating others mistakes.  Look, listen, launch.  The keys to letting go when they reach adulthood.

Welcome to my blog

Welcome to my blog.  I am a wife and mother and by choice do not work outside our home.  Now that my children have grown and left the nest it has given me the opportunity to turn to a love of mine...writing.  Walk with me through becoming an empty nester, aiding my now adult Autistic son, being a Nana, writing my first book and practicing paying it forward.