ROLLER COASTER RIDE....

Yesterday, I read a blog piece that really made me sad. Not sad for
myself...I don't wallow in the self-pity of having children with Autism.
Sad for the child about who the piece was written for.
A child who's mother views as "dead"..because, for goodness sakes,
she has Autism. The child she used to have (before the autism) is dead...

Confusing...I know !!!!

As you read on in the piece, you see this child seems to have come a very
long way. She is now considered "recovered" by the mother. But, I guess
that is just not good enough either. This beautiful little girl happens to have
been born 7 days after my youngest son.
I am amazed how 2 women..mother's of children who are the same age...can feel
so differently about their children.

In our home, we live with 2 severely disabled autistic individuals. The bookends
of our children...the youngest and the oldest..
Kiernan 8 is non-verbal and a ball of energy. He is what keeps us on our toes. He
is beauty and grace. He is our last child, but he has always fit into our very
unique family. He receives therapies and has attendant care, because he requires
a lot of energy to take care of...but, he is worth every minute.
Caitlin, 18, is verbal by choice. She will answer your questions, but they better be
worth her time to answer. She also requires attendant care, because mentally,
she is like an 8 year old. She attends regular high school with a 3.7 grade point
average. She is complex and unique.
Erin and Patrick both have PDD-NOS. Although you cannot tell them apart from
their peers, they have sensory issues. She wears her Ipod and headphones when she
needs to shut people and noises out. We approach their issues individually. Erin
needs a drawing pad and something soft to rub on where ever we go. Patrick needs
a video game or a ball to squeeze. These items keep them focused and able to stay
on task.
Deirdre has Asperger's. She is inquisitive and wants to learn new things. She reads
all the time. Deirdre also listens to her headphones when she is annoyed or irritated.
Deirdre loves older kids, she can keep up with adult conversations and is up on current
events. She is as close to brilliant as their is. In fact...She is the smartest person I
know, and I am the dumbest person she knows ( in her mind, anyway).
Meaghan, our NT child is just that NT...and with that comes all of the angst and heart-break
that a normal 6th grade girl should know. The right hair, clothes, Ipod, boyfriends,
swimsuit, bra, etc.....whew !!!!

I know that God put me on this Earth to be these children's mother. He knew that
they would be loved and cared for. He knew that I would never judge them or their
behaviors. He knew that I would accept them and with this, their Autism.

My children have come such a long way. They have surpassed what others told us they
could never do. They have continued to amaze their instructors and their therapists.
They will continue to do so as they get older and mature. We have seen this in our
older children and will see it in our younger children also.

Autism did not ruin our family. Autism did not take my children from us. They are
right here in front of me. They are beautiful and funny. When they enter a room,
I feel my face light up and my heart fill with so much love. They are meant to be here
and they are meant to be mine.
These children will NEVER feel that they are not meant to be.
We will continue to raise them and adore them. We will continue to enjoy this roller
coaster of a ride that was chosen for our family...and I will continue to thank God
every day for letting me be these children's mother.

BTW..today is my husband's 44th birthday. Me and the kids...yes, all 6 of them,
will be heading out to get the cake and ice cream for tonight's festivities. We will
prepare his favorite dinner and enjoy being around this amazing man...a man who
has never questioned why he is the father of these children, but a man who
works 2 jobs to make sure they are taken care of. A man, who at this very minute,
is at the ball field running a clinic for kids who need a bit of help with baseball, so
they can catch up with their peers (free of charge, of course)....selfless, loving and
strong...Happy Birthday Patrick !!!!

A WORK OF ART...

Our 12-year-old daughter, Erin, is quite an artist. She has a beautiful voice and dances like a ballerina (even though she is almost 5 feet 10 inches tall). Recently, she has been drawing from freehand. These are her latest creations. She left one black-and-white, while the other was colored with vibrant colors...much like my Erin herself. Nope, these are not drawn on pre-printed paper...they are all Erin and yes, like her...they are A WORK OF ART.

MY INDEPENDENCE DAY....

I had an epiphany today...A true blue epiphany..

We like to entertain..okay...I love to entertain..it is the caterer in me.
We had friends over..a single mother and her two young boys, aged 7 and 11.
The 11 year old is quite active and requires some prompts to settle down or stay
on task. They have been in our home before, but I never thought to ask the mother
what "diagnosis" her child had..because, I can pick out Autism anywhere...

I asked the mom..."So, ADHD..."?
She said, "No"..
I went further..
"Aspergers"?
Nope...

Finally, this very bright mother said....He's just Johnny !!!! (yes, I changed the name)

Nuff said...

Why the hell have we parents fought for years for a label...when all we could have done
is accept our child for being themselves?....I so get it !!!
Why are we trying so very hard for our children to be accepted into a community that
would probably not accept them no matter what...because perfection is what we are
used to wanting...

When I watch Oprah or Larry King Live, and see Jenny McCarthy or the other biomedical
mothers...with the scowls on their faces, because they are so frickin mad at what life has
given them...
Then, I look over and see the gifts God has given me....I am so thankful I am pass the anger
that autism tried to give me.

So,yes,
My kids have a diagnosis of Autism..but,
from now on,

They are Caitlin, Deirdre, Erin, Meaghan, Patrick and Kiernan...
They are who they are...they will owe no one an explanation..
they will owe no one a reason for why they are the way they are...

This has become my Independence Day....

Eric London Resigns from Autism Speaks.....

I had the great pleasure of meeting Dr. Eric London, and his wife Karen, in 1998.
My husband, my mother, Caitlin, Deirdre, Erin, baby Meaghan and myself traveled
to New Orleans, LA to attend a NAAR gala.
I had called Karen, on the phone, prior to the engagement to tell her how excited I
was that NAAR was started and to tell her a bit about my family.
You see, we were in the process of having Erin diagnosed at the age of 18 months.
We had 2 kids with Autism, which was unheard of at the time.
The NAAR benefit was held in New Orleans...one of my favorite cities. The gala was
held at Ann Rice's mansion. John Goodman was to MC...I love him from Roseanne.
Delta Burke, from my favorite show, Designing Women, was to attend also. In attendance,
was also to be Joe Montegna (who has a child with Autism)....
We arrived at this black tie affair...my husband in his rented tux..and me, in an evening
gown and a borrowed mink coat. We felt like royalty.

The evening started and we were told that John Goodman, Delta Burke and Joe Montegna
were all stuck on location somewhere, and would not be attending.
Dr. London took over as MC....and you know what..?? We did not miss Mr. Goodman AT ALL!!

Dr. London grabbed the microphone and began to tell a story. The story was about
their child who was diagnosed with autism. Tears began to fill his eyes...and the whole
audience listened and cried with Dr. London. He told about his passion in finding ways
to help his child. He told about his feelings and shared his soul....that was incredibly
brave of him....
My husband looked at me...because I tend to well up when I see people cry (especially
men) and asked if I was okay...
I was !!!
I was, because I was in the presence of a man who was not going to give up finding ways
to help his son and not give in to the pressures of those who are wrong.

This week, it was announced that Dr. London was resigning from Autism Speaks for
reasons that are his....not the cronies at Autism Speaks (yes, poor little Katie Wright
is bitching and moaning about this), or the martyrs who feel it is okay to demean and
belittle other parents over at the AS forum.....
The comments on the AS forum are as low as you can go....they do not know Dr. London.
They judge him because he does not believe the way they do...WAY BEYOND PATHETIC !!
Dr. London owes no explanation to you...but, I will say...he has done it with dignity...
something I think the people over at AS need to acquire.

Dr. London...I wish you and your lovely family all of the best. I hope you can continue your
work in Autism with your new endeavor....
My family and myself thank you for that !!!

WHAT THE FUTURE HOLDS.....

....no parent truly knows. Whether your child is born with Autism or born neurotypically.
We all have a vision of our child's future. While our children are growing inside our wombs, we only hope that their futures are going to be bright.
This dream should not die just because your child received a diagnosis of Autism. What should happen is that we, as parents, begin to map their journey starting at a very young age.
Caitlin will be a Senior in high school this year. She will graduate with her class, and possibly continue her education with job training. Caitlin wants to work in an art gallery or a library. There is no reason she cannot....except...the school does not have a clue as to begin her journey to her goal.

As I read AoA today....yes, I read it every day...
Mr. Kirby writes about the "devastating" number of children with Autism in California,
who will be adults with Autism and how this will affect the tax payers.

We could be so ahead of the game if not for wasting the last 10 years on focusing on
"curing" our children through the misguided advice from politicians and journalists.
We could have used all of the resources if we, as parent's, had not listened to the
snake-oil salesmen and women who promised us "neuro-typical" children if we
chelate, B12, Hbot, supplement, and give a diet rich in GF/CF foods.
Right when I thought parent's were coming to their senses...in walks Jenny McCarthy...
back to square one, thanks to her.

One of the comments on AoA was " Everyone in government and medicine should be getting behind us parents working to recover our children.
Thanks to biomedical treatment, many who would grow into governmental depends will be productive, contributing members of society instead."

My answer to the above opine is...
Everyone in government and medicine should be behind EVERY parent with a child or children with Autism. Thanks to the amazing efforts of educators and therapists who are teaching our children coping skills (instead of snake oil promises), our children will grow up and be productive, contributing members of society....

There are many parents out here in Autism Land that have seen our seriously disabled autistic children grow and blossom into productive children. All without having to buy into the hype that is being sold as a "cure"...

So, what does the future hold for any of our children....only the future will tell...for any child. But, why do we feel that our children will fare any less, because they have autism. I expect nothing less from my children with Autism, than I expect from our Neuro-typical daughter. The skies the limit for all of them....

SAME OL'...SAME OL'...

I have been reading Autism forums since we bought our first
computer in 1997. Caitlin was 6 years old.
So, for 12 years, I have sought out information, from other parents
of children with Autism. I was seeking people who had the same experiences
we had, more experience than we had and different experiences we had
in raising our children with Autism.

After a few years of being involved in the "witty" banter (and let's face it...if
you do not agree with the biomedical community, there is nothing witty about it)..
I decided a year ago, to take a break.

The last 2 weeks, I have decided to revisit the two forums that I frequented...
AutismSpeaks and AutismWeb....
To my surprise....well, not really....I see the same old ranters ranting the same old
rantings...
The same unhappy and unpleasant people who want those around them to be as
miserable as they are. The same name-calling and hatefulness that sent me away
from these forums still exists.
Returning to the forums is very much like returning to watch a soap opera you used
to watch in college and being able to catch up in minutes.
Mrs. Davis is spewing the same lies about the same people and unable to back up her
inaccuracies....
while her cronies keep egging her on...
I truly believe they set her up to look so ignorant (but, that is just my opinion).

Yet, at the same time..not one of these people are helping any parent or child with
autism!!!!

These people with autistic children swore 4 to 5 years ago that they are going to
cure their children by chelating them, changing their diets, supplementing them
with untested drugs, enclosing them in Hbot machines, injecting them with B12 and
lupron shots, slapping nicotine patches on their very small bodies, etc....
Here we are 4 to 5 years later and they still have children with Autism...only older.

Instead of mellowing and finding peace with their children..they are still very angry
and in turn...take the anger out on other parents.
They have continued to try any new cure that comes along...including the OSR crap
being sold by the heads of biomedical.
They have continued to take digs at other parents who go onto these forums to help
parent's of newly diagnosed children...just like they have.

They take every piece of propaganda they can get their hands on and twist and turn
the information to fit their purposes.
So, for this very reason...I will remain off of the forums that are so negatively portraying
autism.

BUT....
I will not stop at trying to help those who are open to a clearer, more logical approach.
I have found many parent's, such as myself and my family, who are willing to
stop this insanity of Jenny McCarthy and Age of Autism....we will be heard and we
welcome to hear from you....
We will not call you names...we will not talk about you behind your backs on "private
forums". We will not demean you for not thinking the way you do. We will not stalk or
torment you like others feel the need to.
We also will not sell you false hopes....just truthful and honest advice that we has been
working for our children with Autism for the past decade and more....

I wish those on the forums luck...I wish them peace....
Mostly...I wish their children happiness in the worlds that are so full
of hate and bitterness....

LAYING IT OUT....

After I posted my blog today..I received a phone call from a person who thought they were anonymous.
This "anonymous" caller told me..

1. I had no idea what autism was.

2. I did not have autistic children to begin with.

3. I am doing a disservice to people with autistic children who are trying to
help their children...

Let me lay out my feelings...

Let me get this out on the table...

I do not believe in this autism hype of recovery or curedom...
I do not believe the GF/CF diet will cure your child with Autism...yes,
the diet will alleviete symptoms of distress in your child with bowel problems
but....bowel problems are not autism...

I do not believe a B12 lollipop is worth crap.

I do not believe a B12 shot is worth crap.

I think you are doing more harm to your child if you do chelation.

I think you are doing more harm to your child if you do Hbot.

I believe Jenny McCarthy is a joke...and I do not mean she is funny !!!!

I believe a whole lot of physicians are making a whole lot of money off of a
whole lot of parents with children with Autism.

I feel badly for parents who log on to the computer looking for answers find
scare tactics and propaganda.

I feel badly for the parents who buy into the hype that they can cure their child.

What I do know...
I know that kids with Autism grow up and get better with traditional therapies.
I know through inclusion...kids with autism will be educated better than those
without inclusion.

I know that parenting a child with autism is hard...but not impossible.

I do feel sorry for the parents of children who have autism and truly believe their
has been a "conspiracy" from the government. Really gifted journalists have started
this theory and have had a really hard time holding up their end of the conspiracy.

The saddest part is, these really gifted journalists have sold their bill of goods to some
parents who sold everything they own to buy into their crap.

And, in the end....these people have made a butt-load of money and the parents
have lost the same amount.

I have said my peace for the time being, but believe me, I am not done....

I am ticked off.....

I am sick of the media spewing this propaganda crap and the sane one's of us
have to sit back and listen....

Our time has come....
As Jenny McCarthy said on the View a couple of years ago.....
"I am going to use my big mouth to educate the people about Autism".....

ON HIS WAY...

Kiernan has always been a man of little...well...no words.
Lately, Kiernan has decided it is time for him to communicate with
his voice, not just his Vanguard system or spelling out the words..

I knew this day would come. We have been raising a child with autism
for over 18 years. Believe it or not....Autistic children do get better without
the need of expensive biomedical interventions.

How do I know ????

Because, we have 5 children with Autism.
3 of them are non-distinguishable from their peers....but, they are autistic.
They went from severe autism, and all that entails (poop-smearing, screaming,
running away, lack of sleeping, non-verbal)...to functional, productive people.
All of this while ingesting a gluten-filled, casein-filled diet.

These children have remained in speech and occupational therapies. They did not
participate in the dangerous practices of Hbot and chelation....

Caitlin remained non-verbal....between the ages of 8 and 9, she decided it was time
for her to talk. She has remained verbal and can answer most of your questions about
her autism. She will tell you what bothers her and why she does the things she does...
like cover her ears and humming. Her mind is quite fascinating....as is she.

So, now that Kiernan is discovering his voice....I want to share with the parents of
children with Autism who are told without spending their life-savings on unproven
treatments that....YES....your child will mature and get better.
Unlike the sites that promote the despair of Autism and all the propaganda that
goes along with this despair, I want to share the joy of my children and all the
joy they have brought us.

So...I believe Kiernan is well on his way to talking to us....
It may be soon, it may not...but....
he is on his way..