IN MEMORY OF BOEY....

On Thursday, our son turned 8 years old. 8 is an amazing age....you think that
your child's life will never end.
Today, I found out that our friend, Janessa "Boey" Byers, an amazing little
girl, passed away. She was also 8 years old.
Boey was lovingly known as the "Cancer Warrior"...she was battling a rare
form of childhood cancer. She went into remission once, and we were praying
for the same results again. Instead, her body gave in and after receiving brain
surgery, she passed away from pneumonia on Friday 12/28/2007.
I cannot imagine how horrible Rachel, Rob and the two boys feel.

This family, the Byer's family, received the Extreme Makeover House in July.
Their show was aired in October. They are from Corvallis, OR.
When Boey was diagnosed in 2006, this little girl took cancer by the horns and
did not just lay around and do nothing....no, she fought back and even has a Childhood
Cancer Bill waiting to be signed in DC.

Please everyone, say a prayer for this amazing family tonight. They will need all
the stregnth they can to get through this. One of Boey's brother's has Asperger's and
is probably having a tough time with this...as is the rest of the family.

Rachel and Rob, please know that you guys are in our prayers.

I know Boey was an Angel in life....I am for sure she is one in death.

Love,
Jeanette

http://www.gazettetimes.com/articles/2007/12/29/news/top_story/2aaa01_boey.txt

THE FACE OF 8.....

Our oldest son turns 8 today...HAPPY BIRTHDAY PATRICK....

Patrick has come so far in his 8 young years. At the age of 18 months, he was

diagnosed with Autism. By the time he was 6 years old, he was indistinguishable

from his peers.

No, we did not use any magic "potions"

Patrick was born 2 days past his due date...he was induced because he was getting

so big. He was 9 lbs 4 oz. at birth.

I was so proud to give birth to my first born son.

As he started reaching his milestones, I noticed that there were things he could not

do. He cried alot, from birth. He played with objects, not toys.

Being that Patrick was our 5th born and we had already had 2 other children

diagnosed with Autism, we felt we were on the "road to Autism" yet again.

I was already pregnant with Kiernan by this time...

We immediately brought in an Early Intervention team of Physical, Occupational, Play and Speech Therapists. So, from the young age of 12 months to 3 years...school age....Patrick

had intensive therapies. He was seen daily by these wonderful therapists. 4 hours each

day.

By the time Patrick was 2, I enrolled him in the local churches Mom's Day Out..He attended

with an aide. Patrick needed the peer interactions and was thriving around kids his own age.

At 3 years old, he began the Preschool Program for Children with Disabilities at our local

elementary school. Since then, Patrick has become inundated with the finest teacher's at

that school.

He has been loved and nurtured. He has been treated as an equal, if not as a role model.

You see, this young man has never, ever had any behavioral problems at school. He is the

epitamy of what a "good" student should be.

His teacher now is Mrs. Mary Hutka....she adores him and we adore her.

Mary Hutka is what every teacher should be...attentive, loving, and firm

when these little buggers need it.

Patrick is one of her "star" students....never a card change....NEVER.

Little Patrick was once labeled "the worse case of Autism they have ever seen" to

being the "indistinguishable from his peers".

If you are around Patrick for a small amount of time, you will begin to notice

some of his "autistic" tendencies.....his inability to tolerate anything wet and cold

on him..that is a problem with fingerpainting.

His shower issues...not water on his head...that is a problem with hairwashing.

The way he says his s, sh, th, f and p sounds....he is doing great in speech, but has

a long way to go.

Patrick DOES NOT have the Autism label at school. He never needed the label.

He does have the label with the neurologist, pediatricians and outside therapies.

At school, Patrick is just another student.....

At home, he is the best son a mother and father could ask for.

WE love you Patrick and HAPPY BIRTHDAY.....

JUST BRING THE MIRACLE BACK...

I just went up to have a discussion with our oldest daughter, Caitlin.
Caitlin is a severely autistic 16-year old girl. Lately, she has become extremely
philosophical.

Tonight she said, "Jane, she died one year ago Christmas"..
"Yes", I said.
Caitlin replied, "this Christmas WE BRING THE MIRACLE BACK".
I replied," Jane is not coming back"...
Caitlin said, "OOHHH"....

You see, Jane was a dear friend of mine...and Caitlin loved her.
Jane died of lung cancer on Christmas Day last year.
Jane was so happy that she was alive to see our new home...she was the
first person I let see it.
She whispered in my ear, "I held on for you Jeanette"....and I knew that.

I miss her greatly...what makes me more proud is that I had a friend so
wonderfully great, that my daughter misses her too.....

Jane would be so proud of Caitlin....

I guess we did get our MIRACLE back after all.....


Thanks Jane..and WE miss you alot...

Jeanette

IN DEIRDRE'S WORDS....

While going through some old files, on the computer that was in our old house, I came across this story Deirdre wrote in 2006. Remember, as you read this, Deirdre is 13 and has Asperger's. I have Deirdre's permission to share this story with you...
She was 12 when this was written...

I am the second oldest of six children. Four of my siblings have some form of Autism. With so much activity in our home, I have to overcome many obstacles.
Autism has always been in our home, since the day I was born. In our home, Autism is the normal. I have learned to understand the many different behaviors that come with Autism. We do not have a boring home. We have a home full of love and acceptance.
I have always felt accepting of my brothers and sisters. Each of them are unique and interesting individuals. Two of my siblings are severely autistic and do not fully understand the concept of my space. I have a hard time with that. I like my alone time and they do not understand that.
Two of my siblings are mildly autistic. They are equivalent to annoying 2-year-old children. I do not have much patience with them, but I do try hard. Sometimes, I get very annoyed with them when they feel the need to get into my personal body space.
Our home is a happy home. My mother and father are loving and care very much for each of us. We feel safe and secure. We know that each morning they will be there when we wake up. We also know they will be there each night to tuck us into bed. I feel very lucky to have such a large, loving family.
In our large family, alone time is very hard to come by. I have to sneak away into my sisters room to find alone time. I can lock the door and no one can bother me. I find time to be alone and listen to my music and go on the computer. I find time to do my homework. This is time I really need to gather my thoughts.
I get some activities that are all mine. I have choir, orchestra, and my Confirmation classes. This is the time that I get to spend on me. My family gets to see me when I have concerts. They seem to be very proud of my accomplishments.
The only changes I have to make is the ability to be able to find my time alone. I think I have managed to do this most of the time. I do not expect that will be a common occurrence in our home, but I do the best I can.
My Mom and Dad try to keep our home as "normal" as possible. They work very hard to make our family as typical as it can be. Autism in a home can be disruptive. I have never felt that, because it has always been what is around me. I would not know any different.
Last year, I found myself failing math. I was very upset. I struggled with the problems. My mother and father discussed, with my math teacher, and decided that I would stay in the program. I worked very hard and finished the year with a low B average. I remember feeling so proud that I could take an F and make a B. I knew I was capable and I proved it.
The first report card of this year was all A's. I have proven to myself and to my family that it is possible to overcome the obstacles of our home to make good grades. I hope to continue to make higher grades. I love to learn. I am hoping to learn so much more.
I do not know if I would change anything. I do not know how my life would be if I did not have Autism in my family. I would assume our home would not be much different. I imagine my parent's would treat us all the same no matter if we had Autism or not.
Since this has always been a part of my life, I do not know how I would be if all of my siblings were what is considered normal. I do not know if I would change them if that was possible. My sisters and brothers are all unique in their own way. They each bring a special quality to our home. I hope that I can say the same about me.
I try to include my siblings in everything I do. I try to bring them into conversations, play and everyday life. I hope that I have made an impact in their lives and they can depend on me for important occurrences in their lives. I hope they know that no matter what, I will be there for them.
My parent's have raised all of us to know that they will always be there no matter what. They have taught each of us that we are individuals and we are to always do our best. My parent's have made each of their children know they can achieve anything we want to achieve.
I hope to continue and grow and overcome all of the obstacles that occur in my life. I know with what I have faced so far, I should not have any trouble with this goal. I know, through living and growing up in my home, that all I will want to do in my life is possible.
Deirdre O'Donnell

I read this this for the first time, as I was typing it for the blog.....
I am speechless...and that does not happen very often.

CHAPTER ONE.....

Caitlin will be 17 years old in February of 2008. She was diagnosed with Autism in August of 1993. She was 2 1/2 years old. So, I have been the parent of an Autistic child for almost 17 years.
I knew, from birth, that Caitlin was going to need extra care. I saw it in her eyes.
She screamed from the moment she was born, until she was about 5 months old. Then, the screaming stopped......overnight.
I was a new mom at the ripe old age of 30. I still had no idea how to deal with a baby. I was clueless. Caitlin taught me alot....patience, love, and most of all understanding.
When she was around 10 months old, we moved from NYC to my home town of Austin, Tx. It was a big move for all 3 of us. During this time, I began to notice that Caitlin did not try to talk or communicate with us. I brought this up to the pediatrician we had found in Georgetown, Tx....recommended by my sister.
At 15 months, we questioned the doctor AGAIN about Caitlin's lack of words. The pediatrician told us that we were "DOING TOO MUCH FOR HER, MAKE HER ASK FOR THINGS"....Are you kidding me????
When I got home that day, I reached for our phone book. On the back cover was an ad for a doctors referral. I called the number and was referred to a new pediatrician. I called, he took our insurance, so I made an appointment.
At the age of 18 months, this new, young, very intune doctor said, "I AM CONCERNED THAT YOUR DAUGHTER IS NOT TALKING......" Bingo. We had found our doctor.
We were referred to a neurologist (whom we saw yesterday....15 years we have been going to him), a speech therapist, a physical therapist and a behavior therapist.
The neurologist told us, "I believe your daughter has Autism"....WHOA....!!!!!
I had dealt with Autism as a teenager while babysitting. I had worked with young autistic teens in college at a residential treatment center....I said to this doctor, "Do you mean she is retarded?"....The neurologist looked at me and said (in a very stern voice)..."I did not say that, I said your child is possibly Autistic".
I was in a fog for the rest of the day.

I then made it my mission to read every book there was to read on Autism. My husband, Caitlin and myself went to the big "downtown" library every Saturday. Remember, this was 1993, there were not that many books on Autism.
We did not have a computer, and for that, I am grateful. I did not have the ability to "Google" autism and receive false hope and promises.
Instead, I was given the only ability I had...to parent a child who happened to be given a diagnosis of Autism.

Caitlin has taught me that her diagnosis does not take away from the fact that we have to be parent's to her. We did not allow her to throw fits in restaurants and stores....we removed her and took her home. She had many temper tantrums at that age. She smeared her poop and other things all over her room. She would take out every piece of clothing, from her drawers, and throw them all over the room.
I remember waking up one morning. While walking down the hallway, I smelled the sickly smell of something really sweet. As I opened Caitlin's bedroom door, I witnessed birthday cake smeared from one side of her room to the other. It took me over 8 hours to clean that room that day.....I was not happy.

As Caitlin started public school, there were no options but inclusion. I am so happy about that now, but then, it scared me. How can this non-verbal, unfocused child sit with "normal" children?
It is possible with the help of amazing educators and therapists. It can be done with the acceptance of the parent's of these NT children....which through the years I have noticed that most of these children are far from "normal".
From Kindergarten on up, Caitlin has been loved and nurtured by her classmates. There is the occasional bully, but bullies are few and far between. I have taught all of my children to ignore those that make it a point to try to demean others. Most bullies will leave you alone if you do not add "fuel to their fire", so to speak.

Fast forward to 2007...Caitlin is a well-adjusted, almost 17 year old young woman. She makes straight A's in school. She still requires an attendant and Speech and Occupational Therapies. She still requires assistance at home through Recreational Therapy....
If you would have told me 14 1/2 years ago, on the day she received the diagnosis of Autism, that she would be the amazing person she is today, I would have thought you were out of your mind.

Please know, Caitlin's story is not over....it is just beginning. She has so much further to go in life. She has so much to share and I will help her to do this.