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
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Thursday, January 19, 2012
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
“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
Tuesday, January 10, 2012
My New Book Venture
As I have mentioned in previous posts I am writing a book entitled 'Jeremiah's Journey' Gainging Our Autistic Son By Losing Him to the System. It's the true story of our son, Jeremiah, and the journey we made with him from birth to us forced into giving him up to DHS and him graduating from high school then getting his first apartment. It is still a work in progress but my goal is to have the manuscript completed by April 2012 and ready for prfessional proofreading, editing and then printing in September 2012. That's where you come into the picture. By visiting Jeremiah's Journey you will have the opportunity to help bring this book to fruition now. My heartfelt gratitude for any support that you can give.
Win
Friday, January 6, 2012
Happy New Year
Happy New Year my friends! May this new year bring joy and blessings to you and yours.
My resolutions this year are few. Finish my book is high on the list but along with that is raising funds to pay for the publishing, getting my manuscript proofread and find a publisher willing to take on my project. It is supposed to be easier now to get published than ever before but I want to make sure my book is error free before it hits the shelves. We finally have a working title for it...Jeremiah's Journey; Gaining Our Autistic son by Losing Him to the System. I'll be posting the prologue of the book here prior to releasing it for sale. A little teaser.
Another resolution is to take more time to show and tell my loved ones how much I care. I lost a family member in December and it hit hard because we had lost contact about 25 years ago. Hard feelings that were never healed took away a possible relationship. I don't want that to happen again thus the change. An 'I'm sorry' or 'I love you' go along way and they will be coming out of mouth more this year.
I think that pretty much covers the resolutions. They'll both keep me busy and make a better person of me. May you be blessed in 2012 with something unexpected. Happy New Year!
My resolutions this year are few. Finish my book is high on the list but along with that is raising funds to pay for the publishing, getting my manuscript proofread and find a publisher willing to take on my project. It is supposed to be easier now to get published than ever before but I want to make sure my book is error free before it hits the shelves. We finally have a working title for it...Jeremiah's Journey; Gaining Our Autistic son by Losing Him to the System. I'll be posting the prologue of the book here prior to releasing it for sale. A little teaser.
Another resolution is to take more time to show and tell my loved ones how much I care. I lost a family member in December and it hit hard because we had lost contact about 25 years ago. Hard feelings that were never healed took away a possible relationship. I don't want that to happen again thus the change. An 'I'm sorry' or 'I love you' go along way and they will be coming out of mouth more this year.
I think that pretty much covers the resolutions. They'll both keep me busy and make a better person of me. May you be blessed in 2012 with something unexpected. Happy New Year!
Wednesday, December 21, 2011
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
Autism Help and Click to Give
Thursday, December 1, 2011
Avoiding Holiday Meltdowns
I touched on the topic of holiday meltdowns in my last post but wanted to expand on it a bit. If I repeat myself it's for positive effect (honest...it couldn't be my age...lol).
December is a busy month for most faiths, so regardless of your's if you have a developmentally delayed child you'll be wanting to avoid the meltdowns that can happen with so much activity. Flashing lights, loud music, and crowds of people can be a trigger if your child has sensory issues. Put yourself in your child's place, even get down on their level to see exactly what they see. Younger children are down in a sea of people with stimuli bombarding them from every angle. Nonsymptomatic children get fussy in these situations, just imagine what the child with disabilities and sensory sensitivity is going through.
Some tips to avoid overstimulation starts before you leave your home. Talk to your child and explain where you are going, what you are going to do, how many people are going to be present, what's expected of them, and give your child a word or phrase to use to communicate when he's almost on overload. The last item works best with a little older children who can recognize a meltdown coming on. Feed your child before going out. An empty tummy leads to a bad attitude.
When you are out give yourself permission to stop what you are doing, i.e. shopping, dining out, etc., and remove yourself from the situation. Getting angry or upset over a meltdown only adds fuel to the fire. You have to remain calm, the child might begin to mirror your calm behavior. If you do not remain calm you can be guaranteed you will be mirrored resulting in a meltdown of gigantic porportions.
Give your child a responsibility while you are out. If you are shopping make it his job to remember one or two items and watch for them on the shelf. It is difficult to have a meltdown when you are concentrating on something. Make a game of whatever you are doing. If you are playing a game your child is less apt to go off the deep end.
Use a weighted sock, blanket or vest prior to and shortly after a large event. You can find an example at http://weightedvest.com/. You can make the sock yourself. Simply fill a tube sock with white rice and sew the end shut. Either microwave or refrigerate for the desired effect and place the tube sock around your neck laying on your shoulders. I added a vanilla scent to the rice so we had aromatherapy going on at the same time. Lavender and vanilla are the two best relaxers.
These are just a few suggestions. I'll add more later as I recall exactly what we did to reduce our sons meltdowns.
December is a busy month for most faiths, so regardless of your's if you have a developmentally delayed child you'll be wanting to avoid the meltdowns that can happen with so much activity. Flashing lights, loud music, and crowds of people can be a trigger if your child has sensory issues. Put yourself in your child's place, even get down on their level to see exactly what they see. Younger children are down in a sea of people with stimuli bombarding them from every angle. Nonsymptomatic children get fussy in these situations, just imagine what the child with disabilities and sensory sensitivity is going through.
Some tips to avoid overstimulation starts before you leave your home. Talk to your child and explain where you are going, what you are going to do, how many people are going to be present, what's expected of them, and give your child a word or phrase to use to communicate when he's almost on overload. The last item works best with a little older children who can recognize a meltdown coming on. Feed your child before going out. An empty tummy leads to a bad attitude.
When you are out give yourself permission to stop what you are doing, i.e. shopping, dining out, etc., and remove yourself from the situation. Getting angry or upset over a meltdown only adds fuel to the fire. You have to remain calm, the child might begin to mirror your calm behavior. If you do not remain calm you can be guaranteed you will be mirrored resulting in a meltdown of gigantic porportions.
Give your child a responsibility while you are out. If you are shopping make it his job to remember one or two items and watch for them on the shelf. It is difficult to have a meltdown when you are concentrating on something. Make a game of whatever you are doing. If you are playing a game your child is less apt to go off the deep end.
Use a weighted sock, blanket or vest prior to and shortly after a large event. You can find an example at http://weightedvest.com/. You can make the sock yourself. Simply fill a tube sock with white rice and sew the end shut. Either microwave or refrigerate for the desired effect and place the tube sock around your neck laying on your shoulders. I added a vanilla scent to the rice so we had aromatherapy going on at the same time. Lavender and vanilla are the two best relaxers.
These are just a few suggestions. I'll add more later as I recall exactly what we did to reduce our sons meltdowns.
Saturday, November 26, 2011
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.
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.
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