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 !!!