Wednesday, April 2, 2014

Autism Wednesday: Kyle's story.

 
 My Dear Readers, today is April 2, known as World Autism Awareness Day. This is something very important to me, as my son Jesse has autism and mental retardation due possibly to other factors as well as lead poisoning as a child.  Each Wednesday I will be bringing stories from parents, information about autism, and hope. 
   Today I bring to you the story of Kyle, as told by his mother, Janice.  

My Mr Man Kyle is 22 yes I call him my Mr Man he always says to me I am Kyle lol ..
When Kyle was 2 he was vaccine injured by the MMR vaccines .Prior to the vaccine
my Kyle was talking , walking , eating and sleeping . He was watching TV like any child that is 2 would do.
I remember it like it was yesterday him sitting in front of the TV eating cheetos' and watching Barney lol
During the nights I would wrap him into his crib and he would sleep through out the nights never any problems with him sleeping & his words were age appropriate , every milestone that a child that was 2 years
met in everyday ..
The day , yes we moms know and remember that day from Hell when we took our children into the Doctors to get
their Wellness vaccines thinking we were protecting them from the world , the many diseases that it was going to protect them from.So they said . that you will hear through out my story .
I brought him home as the sun was going down. I was standing in my kitchen when I heard my Kyle started to scream a high pitch scream. We as moms with vaccine injured Kido's know all too well about .
As I picked him  up to hold him in my arms while he was screaming and turned blue was bareley able to hold him due to his body stiffening up and his back was arched in full blown seizure mode.
The scream felt like it lasted for what felt like an eternity to me it ; little I know that his screams and his seizure was due to him being vaccine injured .. I do remember calling my Mom and telling her it was from the vaccines but at this time back in 1992 nobody had heard of autism or what a vaccine injury was about. 
 
The next morning I couldn't find my son. When I did he was hiding behind the couch . After that he stopped eating he stopped talking and he stopped sleeping .. I AM THE MOM WHO WAS TREATED AS WHAT THEY CALLED THE Refrigerator mom, blamed for not caring for my son by not 1 not 2 not even 3 but many so called Psychologists and psychiatrist who knew nothing about autism or vaccine injury .
This started my journey with my son in a whole new life of hell is what it felt like with the unknown
We finally took Kyle up to UC Davis Children hospital to get a final diagnosis for him
Brian Seigel, top psychiatrist who is and was the top Autism Specialist gave me the words of him being severely autistic & Mild Retardation
The story goes on from there ...........
Not too many people heard of autism and how to treat a child on the Autism Spectrum ,
I was very blessed to have found a School for Kyle, whose teacher not only knew [about autism] he helped Kyle in so many ways: to go to the doctors ,helped me to get him to the Dentist and other vital life skills he would be needing for the future and as part of society.
Kyle did wonderful, he even Graduated from his Severely Handicapped Class with Honor of being the most helpful to others.' Kyle is such a great helper to me and he  always loves to help others.He is a giver.It is a gift he has within him that the vaccine damages couldn't take away.

Tuesday, March 25, 2014

The Connection of Prayer

Yesterday was one of the longest days of my life. Baby Bear had a grand mal seizure. His regular absence seizures are tough enough but to see your child's body flailing uncontrollably and his breathing sounding labored--unimaginable. The Hubs was home as it was just before his shift that it happened. He was closest to J and saw before I did. I just heard the thud when he fell. I had been on facebook at the time so I left a short message: Pray.

I rode along in the ambulance with J and the Hubs followed behind. He had already contacted his mother to alert her as to what was going on. She told him that many had already with assurances of prayers and positive thoughts were going up. She left a message on her own page giving the news about J's seizure. A former sister in law saw that one and called J's cousin, who in turn called Grandma to express his concern. 

We spent several hours at the emergency room, most of it just hanging out in the room. J was groggy but just about back to normal by the time we arrived.  He did fine with the staff coming in and out checking on him, but by 8pm he'd had enough and pulled out the IV starter (that contraption they insist on adding whether you need fluids or not, just in case. It can also be used for taking blood labs).  Never a dull moment with him.  The doctor decided that a few more labs were needed before releasing J to go home, along with a dose of medicine. J sat up and calmly watched the phlebotomist  prepare his arm for the butterfly needle. Then just as he was about to get the stick, J strong armed him and thwarted the attempt. Needless to say they gave up on the idea of more blood for the evening. It was late when we got home and J went on to bed. He slept till about 9 this morning.  I am very thankful. Words can't express how grateful I am that Baby Bear is back to his normal happy self and for so many who offered up prayers and good thoughts yesterday.

This post is being shared withHeavenly Homemakers Gratituesday

Wednesday, March 19, 2014

Autism Wednesday: Is it Better 1 in 50? A Rant

A few days ago a page I follow on Facebook posted the following :





Admittedly, I haven't read all of the studies, but neither do I put much credence into studies that are funded by the vaccine industry or anyone connected to them in any way. And I certainly don't need studies to know that  my son was affected by vaccines. But before attacks me with how safe or unsafe shots are, that one is for another day. Today I want to bring up a different aspect. Bear with me. 

I happened to glance at the some of the comments below the photo. Being that the page speaks much about the harm that can be done with vaccines, most following are going to comment positively. However, like anything there are those who oppose and like to have their voices heard as well. In most cases, not a problem. I believe in free speech.

Then I read a gentleman's flippant answer: "Better 1 in 50 than 100% dying of smallpox, just sayin." 

Excuse me? My child having autism is the key to keeping everyone from dying of a disease that has been eradicated since 1980? You can read more about smallpox here. 

Smallpox was a horrible disease that did a lot of damage, especially to Native Americans who had never before been exposed to the disease. But it never once completely eradicated 100% of the people exposed to it.  The young man who commented (tried to) used emotionalism and scare tactics to try and prove a point. Those are used almost on a daily basis in our society for one reason or another.  My point? Become educated. Don't simply accept what is being said at face value. Do the research. Learn all you can. And then educate others. Put the message out there, regardless of how you feel, but do not belittle others for their beliefs and decisions. 

At any rate, I feel we are going in the wrong direction with shots. Mass vaccinations regardless of circumstances is not the answer. Especially when no one is paying attention to what is in those syringes. We need to take a closer look at all this, not just allowing them to happen without question because we've been told over and over again "it's the right thing to do". 

Regardless of my stance on shots (for the record I allowed vaccinations, disregarding my gut feeling about it and that was before people were discussing possible connections between MMR and autism before J's diagnosis and even a few after, but will no longer allow them as a matter of course) I am not here to tell you what to believe about them. All I want to do is encourage further study and wish to stop the hatred. Things get heated on both sides of the debate but one thing sticks in my mind, and this was  in the autism community itself. One woman stated in the heat of the moment "If you don't vaccinate you deserve for your child to contract some horrible disease and die from it. In fact, I hope they do."  Seriously? How can anyone have that much hatred in their hearts for someone that they hope that a child dies?

In case you're wondering, autism is not the only harm that can potentially come from vaccinations. Again, do the research. Autism and brain damage are what my son deals with, and yes, I believe that vaccines were a part of what caused it. 

But wouldn't you rather he have autism than the measles or the chicken pox? No. Those two diseases last a week or two in most cases. They are largely uncomfortable but once gone, they're gone and the body's immune system is stronger. Autism is with my son for the rest of his life. Although I and anyone else who cares to get to know J know that he is intelligent, his functional age is supposedly that of a toddler--around 14 months--according to the doctors who tested him. 

As an adult he still isn't fully potty trained, although we work on it a lot. He can dress and feed himself and otherwise take care of his needs but in some areas he still needs help. He won't understand you if you speak full paragraphs in one fell swoop but he does understand more clearly if you speak two or three word sentences to him.  He can't be left alone for long periods of time because he can't cook for himself and in case of an emergency he might get agitated and not know what to do. 

When J was younger he had no fear. He had no worries of stepping out of a window onto a fiberglass roof or jumping out of a window (Yes, we had serious locks put on all the windows so that he could not open them and he was unharmed in both situations.). He could figure out how to unlock doors or in one case remove a (basement) window from its tracks so he could go into the back yard and swing. He was a runner between the ages of 2 and 9 and although he never got past the block we lived on at the time, my heart goes out to parents whose children go missing.  I've dealt with well meaning and even a few not so well meaning social workers who thought to help but in many cases just added to my frustration as a young mom trying to figure all this out.
 Now that J is considered an adult he no longer is a runner. He would much rather stay home. But although he would never jump out of a window (he no longer has a chance, we live in a one level ranch now), he does have frustrations that he sometimes takes out on my walls. Not often, but enough so that The Hubs has a wall to fix in J's room already.

His communication skills are emerging more and more, slowly but surely. He still cannot speak very much and sometimes when he can't get his needs or wants known, he cries. It's devastating, not knowing what is upsetting your child. 

And while most parents  look forward to the proud moment when  Susie or Johnny graduates from college and moves out on their own although they shed a tear or two, I stay awake wondering who will care for my son should the day come when The Hubs and I no longer can or are not here anymore. 

So no, young man with the flip attitude. No, it is not "better 1 in 50". I will not say it is better to have a disease no matter what it is, but honestly, I much rather would have dealt with measles, mumps or chicken pox than deal with autism. That's my thoughts on after 19 years after the diagnosis.

I welcome comments and I know what I spoke of here can cause heated discussions. I ask that any remarks be kept civil and family friendly. I believe in free speech but foul language or hurtful attacks will be deleted immediately.  I also would love to hear your autism stories, whether here or through my email, duckigrrl@gmail.com. Just please put "autism" in the subject bar so I know.
Thank you.


 

Tuesday, March 18, 2014

Gratituesday: Reconnecting

This past Sunday was rainy and cool, but it was one of the better Lord's Days' I've enjoyed in the time since we've moved. We had been searching for a congregation to be a part of.  We visited one that was only 15 minutes away a few times, and found the people were friendly and truth was taught there. But it just didn't feel like home. I talked with a dear friend of mine and was reminded that she and her family worship about twenty minutes away from us. We walked into the building and it was like old home week! Familiar faces, pure acceptance. The congregation is small. As in less than twenty people so far. The hubs will most likely get a chance to lead singing there, something he hasn't had a chance to do often in years. Perhaps he will take a turn or two at teaching as well.  J is happily accepted here. The youngest child at the worship service, a seven year old, made friends with him. That makes this mama very happy.  And me? I'm not sure what my role will be in this new congregation. Perhaps I will get a chance to teach the children's class. Whatever I get to do, I will do to God's glory.

What about you? What are you grateful for today? I'd love to hear from you. This post is shared withHeavenly Homemakers' Gratituesday

church photo: Church Icon icon-church.png

Monday, March 17, 2014

Confessions of a Disorganized Housewife: Learning Not to Be an Oscar Madison

Cleaning and organizing do not come easily to me. Some people are born organizers and seem to have an innate sense of where everything goes. Then there are those of us who have the Oscar Madison gene. 
 Photocredit: www.starpulse.com

Most people I know fall in between the two ends of the spectrum. I however, fit in with Oscar Madison. (For those of you unfamiliar with the Odd Couple, Oscar is the one on the left, played by the late Jack Klugman. Yes, I know I'm old.)

However, if you're an Oscar like I am, there is hope. I promise. Inside me there is a neat freak screaming to get out. But I usually can shut her up with a pile of magazines or a new book to read. Mmmhmmm.  

As i stated above, there is hope.  While not 100% neat 100% of the time, I live in a home that I could open the door to company without cringing (much. Just don't open the door to the Bear Cave.). If you want perfection, wrong house. If you want to come visit and have some tea and maybe some cake or cookies, come on over!

So how did I get to that point? I moved. Here are some tips I've learned through trial and error and years(!!) of reading books and magazine articles and following blogs dedicated to cleaning and organizing:
  • Move. Seriously. Actually, not so seriously. If you are moving soon, great!  If not, pretend you are. In either case, while boxing up belongings, pay attention to what you have and purge what you can.
  • In purging, give yourself this test: Do I love it? Is it useful? Does it hold sentimental value? If you can't get a yes to at least one of those questions, toss it, donate it or sell it. 
  • Focus on the amount of space you have. For instance, the bedroom closet. Mine is the size of a shoebox and I share it with The Hubs. Do I really need eleventy-hundred pairs of jeans? NO! Cute as they all are, you can't wear all of them. If you have the clothing budget and the closet space to match, go for it. If not, choose a reasonable number and donate the rest. Share the wealth. Bonus: Fewer pairs of jeans means less laundry to deal with.
  • When it comes to free things (samples, hand me downs), Learn. To. Say. No. Can I do it? Nuh uh. Nope. If I think I can use it, I happily accept offerings. But I'm learning to use a discerning eye .  I choose what I can use and then I pass the rest on to someone else who can be blessed. 
These are just a few tips that are helping me. I have one more for the kitchen. Both Flylady and A Slob Comes Clean suggest starting with the sink. Flylady says shine your sink, Nony suggests doing your dishes. I tend to agree. Once you do your dishes and the sink is nice and shiny, it spurs you on to other cleaning activities.  That being said, it's time for me to get busy cleaning. Have a great day!

Wednesday, March 12, 2014

Autism Awareness

Autism awareness month is just around the corner. For this family though, that's pretty much every month. Every day we deal with it. We aren't alone in this.  The prevalence is 1 in 88 births. For males, the rate is higher. We still do not know what causes autism. Although there are a lot of theories out there, it's frustrating that an awful lot of money seems to be spent on "proving" what doesn't cause autism. Personally I think there are a few culprits out there, but I'm not a scientist so no one really cares what i believe on that point. 

Yes, I do believe that vaccines are part of the problem. I also believe that there are other factors involved. Furthermore, I believe there are things that we can do to help our children. Are children with autism ever totally "cured"?  I don't know, quite honestly. 

In the next several weeks, each Wednesday I would like to post about autism. Facts, websites, personal stories from parents/relatives/ those who work with children and adults with autism. Please feel free to contact me with your own stories: the good, the bad and the ugly. Do you use medications to help your child? Therapies? Alternative helps such as diet, essential oils? Please feel free to contact me via email (duckigrrl@gmail.com). Please put Autism in the subject line so I'll know.  Also, feel free to contact me on Facebook or leave comments here. I do ask that messages be respectful. Please be aware that I may share what you tell me, although I will not use names unless given permission to do so. 


autism photo:  autism.png

Tuesday, March 11, 2014

Gratituesday: Mi Vida Loca --My Crazy Life

I really should be composing an ode to Laura, over at Heavenly Homemakers,
for encouraging me week after week to sit and think about what I'm grateful for. Seriously. Sometimes it is far too easy to get overwhelmed in the day to day drama of bills and kids and housework and everything else...that you (I) forget to sit back and realize the blessings all around us.

I'm going to actually sit here and reflect on the craziness that is my life. The Hubs is still asleep, which is okay because it's the first day of his "weekend" and for once we aren't scheduled to go anywhere today, that I know of. I'm sure I'm forgetting something around here though. 

J is in his room, making a noise that is a cross between a belch and a sneeze. No, he isn't sick. It's a habit he picked up thanks to his cousin and he uses it to remind me that he's not yet had breakfast. No, he's not starving. He's simply bored at this point. If he was truly hungry I would be pulled off the computer or any other task that I happened to be on and led to the fridge. Yeah, he likes to give strong hints. He takes eating very seriously. 

I am the daughter of a woman who somehow thinks I can read minds. One line I hear almost every time we visit is "I could have used your help" on yesterday, last week, five minutes ago. The crazy thing is, she is as averse to the phone as I am. The only person she willingly calls herself is her sister. If she has to, she will make an appointment over the phone, but rarely because she has a hearing problem. Most all phone calls go through my brother, who lives with her. 

I'm at the age where most parents are watching their kids graduate from high school, enter college and/or the workforce, date, have lives of their own. I'm still in the midst of pullups, working on communication skills, and figuring out just who my son is inside that head of his. The grandchildren that come my way are either honorary or feline. And yes, we are on grandcat watch as we speak. Poor Lucy is miserable and crabby with Raven and Charlie, and I don't blame her. She just wants to be left alone. And yes,  she will be spayed just as soon as the kittens are weaned. 

And me? I'm wading through it all, trying to figure it all out and trying to keep up with housework, writing, being a wife, a mom, a sister, and all the other hats that I and every other woman out there wear. I get it wrong more often than not, and I growl and fuss and cry and complain at times. But you know what? I like this life of mine even when I feel lonely or confused or frustrated. Okay, maybe not as much when I feel those things, but I am very blessed and I know it. I'm thankful for this life of mine. Now, if you'll excuse me, I have a bored child to redirect and a day to begin. What are you thankful for today? I'd love to hear about it.


  Older photos of me and my guys.

This post is being shared as part of Gratituesday on Heavenly Homemakers.