AGES OF AUTISM...

Yep...I went there...but, these are the ages of Autism in our home!!!

Caitlin, 18 (almost 19).
Deidre, 15.
Erin, 13.
Patrick, 10 this month.
Kiernan, 8.

Yep...we have many ages of autism.

We have lived through the hypes and the myths of what autism is and isn't.

The past month on the blog site AoA...their words, not mine...parent's have been
blogging about the horror of autism. About how their children have regressed and became
violent over the years...all in the name of autism.
A poem was written by a sibling of an autistic child. I write poetry, so I would never
take away from that, but....my question is why does this college aged student have
so much anger towards their sibling (I know the answer, but do you?) ?

Not one of our children have regressed in the last almost 19 years...not one.
They have done nothing but progress...
why is that?

Could it be that we never expected anything more from them than what they are
capable of doing (and that is so very much)?
Could it be that we did not have the anger towards their autism (that has to be tough
on a child and a marriage)?
Could it be that we expect no less from our children with autism than we expect from
our child without autism (Meaghan, 12 in January...and a very typical pre-teen with
amazing friends)?

Speaking of Meaghan...she has a very close group of friends who spend much time
in our home. The parent's never question their children being here..they adore our
kids...but, who wouldn't.??

I wonder why the kids whose parents hate autism so very much have such great
difficulty with their children...maybe it isn't the child or the autism they are having
difficulty with..
maybe it is the fact that they did not get the child they thought THEY deserved.
Maybe it is the ideal of a perfect child that has enabled them to be so angry with
autism.

I have recently gone back to work full time...I am thankful that at the tender age of
49 someone thought enough of me and my talent to hire me. I am doing well and hope
to continue to progress.
I don't have much time for the drama of autism.
I thank God for that.

My husband and myself are the parents of 6 children...5 of them have autism....all of them
are PERFECT....

I will repeat myself...

I thank God every day that I was blessed with my children. I have become a much
calmer and patient person because of these children.
When I was 22, I started working for a residential treatment center...I worked on a dorm
with Autistic teens (whoa, they would be in their late 30's now AoA)..my wonderful Aunt
Gwen asked me, "Why does such a young girl like you want to work in this atmosphere"?
After my children were born, Gwen called me....she remembered that conversation...
she said,"I know now that God put you there..he had a plan for you"...

I think my Aunt Gwen was correct....

SHE WORKS HARD FOR THE MONEY....

After much thought and discussions with the people who matter most to me in this world, I have decided to rejoin the work force. With our children doing so well in life, after much hard work from many people, I decided to go back to work at a job that I enjoyed so much, many years ago.
I was hired the day of my interview...much to my surprise...and welcomed back with open arms.
I finished training on Friday, and will go full force into my career on Monday.
Yep, at the ripe old age of almost 49 (in November), I will begin a career....who knew?
The kids have done remarkably well with the transformations going on around here....not just my transformation, but the fact they have to rely on someone else to have their needs met until my work day is over.
I do get to work from home, but I am not able to tend to the needs of my children....
We have been blessed with an amazing young woman who is their care-giver until I am off the clock. She has stepped up to the plate and left me with no worries. I thank her very much for that.

With my new career, I have very little time to keep up with the world of "autism". That is probably a good thing. This week, while catching up on the various "I HATE AUTISM" websites..you know who they are....I came across some very disturbing things.

I read a piece by a woman who feels her child has ruined her life. This "mother", and I use that term very loosely, blames all of her family woes on her child with autism. Because of her child, the other children suffer (her husband and her have to devote all of their time to this one child), her house suffers, her income suffers....what a shame!!!
The most shameful part of this story is that this young man, who has much more worth than his parent's give him credit for, is suffering...not physical pain inflicted by these parents, but the emotional pain of having to carry such a burden of being made a martyr.

I then go on to read, on a forum, a story about a little boy, Kyle Forbes, who saved his teacher's life with the Heimlich maneuver... http://www.cnn.com/video/#/video/living/2009/10/15/quinn.scout.saves.choking.KTRK
Instead of praising Kyle and his family, for raising such an amazing and caring young man, the family has to read an entry on this forum that read:

I just posted on this on the other forum...would you guys call that boy autistic?!! In my book, he might be a bit odd or immature, but NOT autistic! How could he possibly meet the criteria? If that's what people are claiming as autism, then I question the "1 in 60" numbers I'm hearing. I'm beginning to wonder if anyone who has a child who is a bit slow or doesn't excel is calling it autism.

I'm sorry--that just kind of made me mad. No wonder everyone in my family thinks this is a fake diagnosis, and there's "really no such thing as autism."

Shame on this "mother", who should be so proud of the autism community being portrayed on the media in such a positive way. This "mother" who should be commending the parent's of Kyle for teaching him to be compassionate and caring....

Mr. Forbes went on to comment:

Well, this is Kyle's father, and yes, he is on the high end of autism-Aspberger's. Is there any way to present this story to the world without "offending" someone? No. Is his condition a form of autism? Yes. Are you calling me a liar? Can you control the media? Are you saying that a good story about a great kid should have been done differently? If you can't see the positive in the occurrence, then you must be full of negatives yourself. My son has been struggling with his persona, and I for one am proud of what a good young man he is. He did not speak until 4 years of age, and still "stems" and has social/personal difficulties, but there's no reason to downplay any of his being.
Also-how can you judge someone over an interview, through the media? By the way, watch the video again: the kid standing next to him in the orange UT shirt is his friend Adam, who is severely autistic. Could you tell through the TV????

Mr. Forbes,
My children's autism was also questioned when they were shown on television. They were not "autistic" enough.
I blogged about this previously....http://survivingmotherhood-mom26children.blogspot.com/2007/06/expert.html

I was taken back a bit by the statements people made about my children after our show was aired. Statements made by people who have autistic children, not Neuro-typical children.
Hateful comments on my children's clothes, hair, behaviors, and their size.
Instead of looking at how far these children have come, to be able to handle moving out of their old home, being sent on a wonderful vacation, and coming back to an all new environment...all with minimal meltdowns....these "autism" parent's decided to write letters and emails to the media to try to discredit my family.
Funny thing, this was all done because they saw 45 very edited minutes of our life.

My children continue to thrive....
All made A's and B's on their report cards....including Kiernan (who is inclusioned in 3rd grade). With the encouragement and determination of some amazing teacher's...here is his first real report card:
Reading-A
Writing-A-
Mathematics-A
Science/Health-A-
Social Studies-A-
Art-A+
Physical Education-A-.

All of these grades are not altered or modified....all his.
All done while being severely autistic and non-verbal. All while stimming and rocking behaviors ensue....

So, because of my children's amazing progress...and with their blessings,
I have returned to work. With the support of my husband, who continues to work 2 jobs,
we are making this transition.
I am so proud of my kids....for all of their achievements....and the many more achievements to come....

THE HYPOCRISY OF THE AUTISM COMMUNITY...

This week, according to the news, John Travolta admitted his son had autism...
big frickin' deal...we all knew it. We saw the pictures of Jett walking on his tippy-toes,
flapping his hands and being held by his hands while he walked. We, in the autism community,
knew they were raising a child with autism.
Now, the autism community is pissed off because John and Kelly Travolta did not
admit this while their son was alive.
What good would that have done?
Because John and Kelly did not choose to exploit their child as other celebrities
with Autistic children have (um-hm....Jenny Mac), they were wrong?
I have no doubt in my mind that they did not do the best things for their beloved
son. I have no doubt that John and Kelly Travolta worshiped their son....autism or not.

We do not all find it necessary to throw a great big pity party because our child(ren)
have autism.
As a matter of fact...some of us still believe our children can reach their potentials even
though they have a diagnosis of autism.

I feel so completely sad for the child who is subjected to procedure after procedure
to prove they can be cured of their autism. I feel great empathy for the child who
is told they are broken or need to be cured. I really find great sadness in the latest video
that Autism Speaks has put out....
Let me clue you in on something....if you think your marriage was ruined because you
have an autistic child...you probably had a really bad marriage to begin with....to blame your child for it is pathetic.

The world of autism right now, in 2009, is full of doctors who are milking you for your money,
organizations who are playing on your sympathy for money, and very angry parents who
are trying so hard to blame someone for their children's autism.

During this time, when parents need to stand together, the propagandist in the autism world are working harder than ever to make the world think that autism is supposed to be one
huge pity party.
Wander over to the Autism Speaks forum...the same mothers and fathers who have been
chelating and bitching for years are still there...mad as ever. They still tell you that they are
right and we are wrong. Funny thing...our kids are improving (oh, that's right....our kids never
had autism...) and they are still bickering amongst themselves.

Thank goodness there is a brave group of parents stepping forward and making themselves heard...we can be just as loud and just as obnoxious. Difference is, we will not call you names because you do not agree with us. We will not sell you anything or try to coax you into our way of thinking. We will stand next to you when you need help and we will support you.

Take a moment...
Look at your amazingly beautiful children....
Feel blessed that they have been given to you to raise...
Tell them you love them for who they are....

PUUURRRR-FECT

Yes, even I get the occasional virus...it happens.
Last Wednesday, I started to feel badly. By Friday...YIKES !!!
Full-blown virus. Sore throat, achy body, tiredness....
And NO !!! It is not the Swine Flu ....

So, here is my story...
I was laying on the couch, only to get up to fix the
occasional meal, or take out the occasional laundry and
fold it...other than that, I did not do much "labor" this
Labor Day weekend.
As I was lying on my couch, which is so comfortable that you can
crash there without wanting to, I had an occasional visitor.
It was Kiernan...my 8 year old, non-verbal son....
He crawled up on me...said, "Ma"...gave me a huge kiss and hug
and then, without prompting...purred...
Yep, purred like a little kitten.
Kiernan has purred since birth.
In fact, he reminds me of my cat Junior, my Siamese cat that I had
in my life for over 25 years.
Since Kiernan was a baby, if you rubbed his head, the boy will give you
a full-fledged purr.....it is soothing and gentle.
So, in my sickest state this weekend...I was soothed...
not by the words of the most amazing young man in the world,
but by the purring of a gentle soul who knew his "ma" needed a bit
of purring just to feel a little bit better.
Thanks Kiki.....

EXPECTATIONS OF MOTHERHHOOD...

I remember back when I was 29 years old..yep, 20 years ago this year.
I told my boss where I worked, at the Sheraton Centre Hotel in Midtown Manhattan,
that I was going to have a baby.
Patrick and I bought as many baby books as we could find at the local book stores.
We read the month-by-month accounts of what should happen during my pregnancy.
Sometimes they were right on target....most times not.
I had a fairly easy pregnancy.
We did the obligatory lamaze class with a very spectacular Jamaican woman in the
East Village...that was fun !!!
Caitlin came fast and furious..so fast that the cab driver did not want any money from
us after we went through every red light from 52nd street and 7th to 16th ave and 1st.
Beth Israel was very slow that night. They thought I was exaggerating when I told them
that I felt the head...by the way..they were wrong !!!
Caitlin came out 8 pounds 11 ounces. She was gorgeous. Wide eyed and gorgeous.

Everything I had read about what to expect from the pregnancy and birth went flying
out the window. This was my child and she was perfect.
Even through the next few months of screaming, lack of sleep and also being a new wife...
she was perfection to me.

As she approached the age of 1 years old, we moved down to Texas. Caitlin, still gorgeous
and wonderful, was not doing what other 1 year old children do. We questioned the doctors,
but they told us we were worrisome parent's.
Caitlin continued to not talk and seemed to be in her own world. Now...if you know me...
I believe in individualism...but, I am a ham. I love singing and dancing...especially Broadway
musicals. I made Caitlin dance and sing with me. People were amazed that she was so
lovey-dovey (poor kid did not have a choice).

I had an in-home day care and saw the other children and their growth. I knew that Caitlin
was not like them...but frankly, I liked her better. She did not have the typical terrible twos...and I thank her for that.

In fact, none of my children had them. What the heck is the terrible 2's anyway?
I have recently read where parent's are upset because their children missed being 2 years
old because of Autism....
Where were they?
Did they not turn 2?
Were you so depressed in the Autism you missed it?
Now, that is very sad to me !!!

I never expected any of our 6 children to be any ways near like each other.
I never compared their milestones to be like each other. They are each individuals
that will progress at their own paces. They each achieved in different areas at different
times. No one is better than the other. They are who they are.
I have no expectations of who they are going to be....they are mine....
That is enough !!!

FACE TO FACEBOOK...

I recently "friended" a person on Facebook, who by her Facebook name was a
commenter on the Autism Speaks forum. This mother of a child with Autism
tends to be more towards the Neurodiverse side than the BM side of treating
their child with Autism.
She puts up with criticism well, and stands her ground without being hateful, so I
accepted her "friend" request.
Well. lo and behold, it was brought to my attention today that some scum bag of
a parent on the Autism Speaks forum has used this name to gain information from
some of my true Facebook Friends.
First and foremost...how really stupid is this person. It is so very easy to find
out your true identity. Do you think that the true person cannot sue you for
using their name? Do you think we cannot join in on that fun for using our information
to play your really silly little game?
I hope you lose a lot of sleep over this. You were really, truly playing with the wrong
set of people.
If you have children with Autism...which, by the way, I think you do (and more than one..
wink, wink), I hope you start refocusing your attention away from stalking and prying
into people's lives and start dealing with your own life. By what I know...it sucks!!!!

To the innocent person who was affected by this...I am so sorry you were brought into
this..you were put into a situation that was not warranted by any of your actions...
Let me know what you need from my end...I will help you !!!!

WHAT IT IS ALL ABOUT.....

In my house..it is not about pulling metals, fixing GF/CF food, crushing supplements or bashing my husband. In my house, it is about raising children to be loving and caring.

I asked our daughter Deirdre, who has Asperger's, to please take up Caitlin's dinner. She likes to eat in her room...so, I let her. I said to Deirdre, "when you give her her food, tell her you love her (because that is what I do)..."
Of course, Deirdre says "NO".
I said, "C'Mon"...Deirdre agreed...reluctantly...

Deirdre came downstairs with a huge grin on her face...

I asked her if she said I love You....Deirdre said, "I said Love Ya"...

I asked Deirdre what Caitlin said....
Deirdre said, "She said "I love you" back"...

I asked Deirdre if that made her happy....
Deirdre, in all of her wisdom said, "That is why I am smiling"....

Of course..I start crying !!!!

I have had a crappy day...fought with the bank, fought with cable, had to get Kiernan's
Vanguard system back on track, needed to go to the post office (couldn't), fighting a really
shitty sore mouth, having my provider not show up, but...in the end...
this is what my life is all about....
About being able to raise Autistic children to be loving and caring...

God has given me quite a lot. Sometimes I wonder why he chose me...
This last week, reading the whiny crap on other blogs and on AoA, I now
know why....
I hope you can figure out why soon !!!

FOAMING AT THE MOUTH....

While catching up on reading various blogs on Autism this morning,
I came across a blog written by a mom who approaches autism from a
biomedical point of view. She was complaining about her life in biomedical
by how hard it is for her to mix the biomedical concoction I am almost sure
her child "loves" to take, her lack of finances, her poor marriage, etc.
I continued reading, because the blog was titled "United We Stand, Divided
We Fall" over at the Age Of Autism site.
When you follow the link over to the blogsite the article came from,
the title is :

Don't Fuck With Me Fellas, This Ain't My First Time at the Rodeo

BIG CONTRAST there, huh?

So, we mother's who are fed up with the whining and hatred over at the biomedical sites
are supposed to be united with these bio-med moms...especially after lovely comments
such as "foaming at the mouth", "neglecting our children", "sitting back and doing
nothing".

Instead of being so mad at the Neurodiverse crowd, you parent's of biomedical
interventions should be mad at the doctors and "experts" that have made you
so very mad in the first place.
Promises of cures and recovery, that many of you have stated have not occurred, even
after giving thousands and thousands of dollars to these people.
After reading where one mother gave 18 IVIG infusions to one child, only to have
the child regress back into her former autistic self...shame on that doctor for continuing
the treatments...more shame to the mom who allowed it.
After reading about a mom who is pissed that Hbot did not cure her son, even after
trying every treatment imaginable (including a nicotine patch put on his butt)....and she is so disappointed in a child who she "wished had recovered by kindergarten"....he is now
8 years old. How very sad that this little boy is such a disappointment to his mother.
You should be mad at the doctors who sell you these "protocols" that are not covered
by insurance....and do you know why?
Insurance is not used on unproven, unsafe methods of treatment. I thank God there
is someone who draws the line at what will be covered and what will not be covered by
insurance. That would be my wakeup call as not what to do to my innocent child by
a person who claims to want to help them, yet will not take my insurance....duh !!!!

Lately, the biomedical community have been playing the pity card. Poor, poor me...
my child is not recovered...my child is making me so unhappy because I am broke,
divorced, have no friends, depressed, and just plain pissed off !!!

Most of the parents I have met, who practice the "ND" approach...which, by the way,
is still very hard... is a hard-working, happy, well-rounded, accepting person. They are not foaming at the mouth. They are not screaming or ranting at those who do not agree with them. We have not given up on our children. We love them. We educate
them. We make sure they go to their therapies. We make sure they are at their
prospective extracurricular activities (ie, baseball, ballet, etc). We make sure we
teach them how to behave and what is acceptable behaviors (oh, btw, that is called
"Parenting")....
We take our children to the doctors when they require medical attention, we
schedule dental appointments, neurologist appointments and appointments with
therapist...and with more than one child on the spectrum, this is sometimes quite
fun.
We prepare meals for our children to eat....just because they are not GF/CF meals,
does not mean we do not love our children any less than you guys who promote
this diet.

We had a difficult day with Kiernan yesterday. He was in OCD mode...obsessing
on everything. Today, with a much calmer Kiernan (without medication, mind you),
I thank God for the patience he has given me. I also thank him for giving me a husband
who knows when I have had enough. I thank him for all of my children, who make
me who I am...
I love being a mother...it is why I am here.

It is now 4:30 pm. In between writing this blog, cooking breakfast and lunch and
now making dinner, I have put a great deal into writing this blog.
I do not dislike any parent...whether they believe that biomedical interventions are
helping their children or not.
I dislike the fact that these parents find it okay to name-call and demean us on
comment boards such as Age Of Autism:
just a couple of examples from today are...

Next time a biomed parent sings that they do not name-call or bring down
parent's who do not practice the methods they do, cite some of these comments:

You don’t hear biomed parents out there chastising others for not doing biomed. You do hear biomed parents telling about their experiences and recommending resources, but not calling someone derogatory names for not doing biomed.
Differences do not need to be divisive. We are all struggling along as best we can. In my experience, biomed parents are pioneers who are devoted to their children, not deluded, desperate, etc. Biomed parents should be listened to as useful resources, not maligned.

Posted by: Twyla | August 02, 2009 at 03:07 PM

From Mlinn:

Having been at this twelve years now, I'd have to agree the divisiveness within the autism community has been one of the most frustrating aspects. For the life of me I will never understand how anyone, let alone a parent, can embrace this disease as some sort of a twisted blessing and do next to nothing in response. I've seen people buy expensive houses and cars and claim alternately that they can't afford biomed/behavioral treatment and that their child doesn't really need it. I've also seen single moms on welfare and couples teetering on the edge of bankruptcy be ferocious advocates and figure out a way to get services and treatment for their kids. I believe it all comes down to selflessness and individual character. So at the end of the day, after the anger and sometimes jealousy toward the "ingnorance is bliss" crowd, what I mostly feel is pity.

Posted by: mlinn | August 02, 2009 at 12:45 PM

Crystal, great article. And you're right-I don't think too many biomed moms go screaming around pontificating about how great they are because they're curing their kids autism, while dissing the moms who choose not to do it or can't because of the money challenges. My heart goes out to you all!!!!!

Posted by: jennifer | August 02, 2009 at 12:22 PM

Anna send me an email, there may be some hope, stay strong, I bet there are at least 50 people reading this that may be able to relate to your situation. It's a struggle for us all. We all would welcome sharing with you some of our resources, what little there are.

My email is bensmyson (at) gmail.com

Posted by: bensmyson | August 02, 2009 at 12:07 PM

Crystal, your article hit hard on me. I have not accepted autism, even though my son is 28 years old, and daughter 21. I have not accepted it by telling others that what happened to them, was ioatragenic. I have not accepted it by going into grave debt to cure them (with some major improvements her or there on biomed), and
I have not accepted it by not vaccinating (at least the moms by real free choice)the next generation, my grandboys. I have not accepted autism, because I know it was initiated, linked, worsened by mankind. I don't accept genetics as the main problem, but I do accept predispositions. I don't accept that genetics can account for this epidemic, and I don't accept that we can sit back on our laurels and see this holocaust continue. HOWEVER, I do accept and love them, but not as is. I expect better things in the future, even at this late date. My hope is never dimmed. My love for them, enormous. If my hope goes, so does my hope for living. Iaccept, that the world wil not accept the inevitable cause of autism. I accept that the powers that be will deny this for generations, as they did with other human experiments on the masses. I accept that genetic research does not account for the environmental triggers that caused this epidemic. I accept that the least likely funded studies are those that implicate products and procedures that cause autism.

One person said, doesn't it exhaust you to be so involved in the cure, when you can just accept things as are? I told her, it exhausts me more,that people don't accept there are children being cured everday, even though it's not my children. When we finally broke down in the genetic angles, we found that they lie close to autoimmune genes. Surely, the IDSA, AAP can accept, that the immune system responds to the enviornment and their triggers?

If anyone thinks I feel less of my children, they have another thing coming. I feel more love for them then anyone will ever know. I would take a bullet for them. I would give my right arm for a cure, a magic pill, a procdure that worked. Every improvement is a miracle. The ultimate healing person is God himself, and either in this world or the next, their day will come.

Posted by: Kathy Blanco | August 02, 2009 at 11:44 AM

It's tough to embrace something that threatens a cultural environment that has existed for many generations in families where kids typically grow up, enter school, have friends, get a job, get married and raise a family. I've been told that, "Ben doesn't seem that bad, you're lucky" and I felt like saying, "Hey, if a boat leaks, no matter how big or small the leak, the boat will still sink dumbass." There is no such thing as "not that bad" when it comes to atusim. And people seem to think autism is not a deadly illness because they don't see what the parents see and hear and read. I've actually had a couple of people say that "at least autism isn't fatal." OK great, Ben won't lay in a bed at hospice and succumb to autism, super. How do they know that to be true though? Who told them that? Anyone study that?

Do they know for a fact that a 12 year old autistic boy will not drown in a pond or river because he impulsively reached out to touch a leaf floating by
http://www.heraldnet.com/article/20090711/NEWS01/707119928/0/SPORTS or that he
won't get killed by police for failing to cooperate
http://archives.chicagotribune.com/2006/nov/19/news/chi-0611190063nov19 ?

Autism is indeed killing people, a woman holding her autistic child jumps off of a bridge in the UK
http://www.telegraph.co.uk/news/uknews/1340989/Mother-jumps-to-death-holding-her\
-autistic-son.html , another woman tried to talk her 16 year old into stepping off of a bridge then strangled her daughter when she refused to jump http://spidernet.nl/~martijn_dekker/internaut/news/9807/30.casey.spml, a mother,
a well educated doctor, smothers her autistic daughter
http://en.wikipedia.org/wiki/Karen_McCarron, a grandmother kills her autistic grandson and herself because it was too much to handle
http://www.dailypress.com/news/wtkr-chesapeake-murder-suicide,0,7632434.story. An autistic nine year old recently drown in a fountain at a park, the water was 3 inches deep. Yeah autism isn't deadly, not at all huh?

These stories are extremely real, and the number of stories of autistic children suffering and dying is horrendous, usually it's the caretaker that's overwhelmed reaches a breaking point and snaps. Was the caretaker married? Have any help? Support? Was she seeing any improvements, any hope? Who was counseling her? What advice was she given? We've all seen one variation or another in the news about a discovery of a child being kept in a closet, malnourished and "retarded" while other children in the house are well fed and seem to be unharmed.
http://www.tampabay.com/features/humaninterest/article750838.ece

The other part of this of course is the staggering numbers of children that stop looking their parents in the eyes, spin like a top, flapping their arms, throwing a violent fit in the middle of a grocery store over the change in packaging of a stupid cereal box. This is my 9/11 and my enemy is autism. It took Ben from us, and replaced him with a different child, one that looks exactly like Ben. He was taken from us by a vaccine that we were told would not cause autism, DOES NOT cause autism, will NEVER cause autism. We were given a video of Dr. Offitt from the doctors office as a way to "inform" us parents as to the safety of vaccines. Yet a doctor the other week, one that serves on the Board of the American Association of Pediatrics, an organization notorious for denying the vaccine/autism link, looked me in the eye, and said, "I cannot rule out a vaccine as being the cause Ben's autism. "

I have little tolerance for those that "encourage" us to embrace autism. Yes, my son is the joy of my life. We are extremely fortunate that he has recovered so much in such a short time, but we work at it, constantly. I want to do everything I can to rescue him, by any means, at any cost.

I read a story the other night that brought me to my knees, a woman wakes on her downstairs couch at 4AM to the screams of her 4 year old daughter at the top of the stairs, she looked and their were flames on the ceiling on the second floor. The house was filled with smoke. The mother ATTEMPTED to climb the stairs but was turned back because of the "heat", made it as close as 10 feet to her daughter. The fire seemed to be coming from her 13 month-old son's bedroom, he was also screaming. The mother turned away from them, dialed 911, went outside to pray waiting for help.

The little girl survived, the boy didn't. It was all over in about ten minutes.

I read the story to my wife and asked, "Would you even have to think about climbing those stairs?"

What we do is instinctive, to us there is no choice, we don't even think of other options, we must brave the heat, climb those stairs, blindly risk everything to save our kids.

Do I want to kick someone for waiting at the bottom of the stairs, waiting on God, "accepting" fate without a challenge? You're damn right I do, and the next one that attempts to counsel me to wait at the bottom of the stairs, to accept it, will get the living shit kicked out of them. I have absolutely NO respect for them. Their rationalization of their passive stance, their denial, their fear, does not belong ANYWHERE near my situation and those of the rest of us who are having our clothes burned off of our backs as we work our way thru fire to find our children.

F'em! AND the horses they rode in on! Either you're for us or you're against us, there is no middle ground with me. I'm too damn tired, too burned, too pissed right now to hold hands with a bunch of pussies.

And here comes the H1N1 vaccines.

Posted by: bensmyson | August 02, 2009 at 10:42 AM

Strong writing, Crystal. I think your premise that "ND moms" are in it for their children is about 80% flawed. They seem to fit in with the 20% of our population that is impervious to any data that runs counter to their ideology, which they adopt as a faith in place of knowledge. You could no more "debate" with one of them as you could with "birthers."

ND is ultimately about them, not their children.

Posted by: David Taylor | August 02, 2009 at 10:34 AM

Crystal said...

OMG...I've got an article coming out on Sunday in AoA. I bet they trash me, too. :) Bring it on!!! :)

Thu Jul 30, 06:09:00 PM EDT

FOUND THIS TODAY ON JOHN BEST'S BLOG

Nice Crystal...nothing confrontational about this, is there???

Bringing it on...as requested !!!!

I just found a new comment:

Bensmyson, great points. If it weren't for biomed, my son may well have been dead by now: run over by traffic, drowned in a body of water, or maybe lost in the woods somewhere.

Posted by: Elizabeth | August 02, 2009 at 04:42 PM

REALLY NICE !!!

Latest from Crystal's comments on her blog:

Anonymous said...

I love your blog. I also do biomed with my child and see such improvements daily. Beware of this bitch who just loves to rip people to shreds for helping their children. She claims to have five autistic kids of her own and has a real mean streak to her. She also claims to embrace autism yet I find her bitterness tells a different story. Keep up the great blog.

http://survivingmotherhood-mom26children.blogspot.com/

August 2, 2009 5:36 PM

I am the bitch in question...notice...he or she is a chicken Anonymous...
and what's with the "beware of"..like I have power ???

Does the "Claim to" sound familiar...???

Man...this is pissing me off...
this was commented today on Autism Bitch's site...

Foresam said...

Crystal,
Do you think Mom 26 bashes responsible parents because Pharma arranged the free house she got on that TV show?

This is what I followed up with, while waiting for approval..
yeah, like that will happen:
Crystal,
I see the game you are playing....you just want to make it seem like you are the "good guy"...well,
you have some pretty crappy players on your side.
I wish you well, but I really hope your child can make you happy...
I doubt it though..
You seem to be happy wallowing in your unhappy marriage and blaming autism for it...
When you let John Best post and did not allow my very "tame" post to rebuttle being called a bitch..you defined your agenda.
If you want respect from people, you have to respect them...
The Pharma comment is not worth commenting on, but I did rebuttle on my site...
Where I will post this also...
I hope you get over yourself quickly...
Your child needs you!!!

New post today:

Anonymous said...

Mom26children and others, like that repulsive Wombles woman, wonder why biomed mom's attack them. Um, let's just look at the title of Mom26's blog. WHAT ARE THEY THINKING? Clearly meaning that what everyone else thinks is wrong and she is right. She continually boasts about herself and conveys in almost every post she writes how right she is and how she has been at this for 18 years and how she has all the answers and how the biomed moms and dads are wrong and that they can't accept their kids and these poor children have mothers and fathers who are just miserable and how horrible they must make their kids feel and blah, blah, blah. Jeanette is a twisted, self centered woman who can't get off her own pedestal and Wombles does nothing but kiss her ass and act as her puppet. Mom26children needs to get over herself. Her know it all attitude is nothing but a result of misery with her life. If she and Wombles were that secure in their beliefs they would not feel the need to create blogs bashing other parents for helping their kids.

August 4, 2009 2:10 PM

The agenda over at Autism's Bitch is "CRYSTAL" Clear...get it...I made a funny !!!

I have tried to reply 2 times and have not been accepted....oh, those pesky "agents"...

A new post on Crystal's blog...still not being able to respond ???

Anonymous said...

These are the words of Mom26. Sounds to me like she is describing HERSELF perfectly!!


I think you have defined your agenda quite well...
You don't want to get along with anyone who doesn't agree with you...so very sad !!!

To the ANONYMOUS coward...I have tried to respond...Crystal has said her "agent" won't let her...

I wrote this to Crystal in an email tonight:

Crystal,
I thought you would be a "bigger" person than you are presenting yourself to be.
I enjoy the bashing I am getting on your blog..so much so that I am putting it on my blog.
I do not believe you and your "agent" story....a blog is a private enitity.
I would think your "agent" would be more concerned with you bashing a mother of 6, some with
Autism, than me posting on your "precious" blog...
I am surprised also that a mom with a child with Autism would happily let others call her
a "bitch" and a Pharma shill...
Like I said, you have defined yourself to me...

I hope your son gets better so your life will improve. I do not see this happening while he
still has Autism...something I find very sad !!!

Jeanette

I am done with her....she is way too sad for me...

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..

EXAMINER.COM.....

I have been hired to be an Examiner...
I am beyond excited...

Here is my first article...


EXAMINER

OPENING A BLIND EYE....

.....TO AUTISM....!!!

Well, specifically to Autistic Adults....

I have read, continually, that a certain group (and we all know who
this group is...so I will not dignify them with a link) want so be shown
the Autistic Adults....
I believe the question is...
"If Autism is not new, then where are all of the Adults with Autism"???

OPEN YOUR EYES.....they are right in front of you....

They are at the grocery store..
They are at the Walmart and the Target....
They are at the malls....
They are living under my roof....and soon to be living under yours....
They are working in factories, computer companies, shopping malls, retail stores,
and local businesses.
They are living on their own..or in group homes...or some, remain in their homes with
their parents.

While shopping with my 18-year-old daughter, Caitlin, yesterday....a woman
gave Cady a sneer as she walked by humming and buzzing.
I approached the woman and sneered back at her...okay, the Texas Mama in
me came out....it was a moment.
She asked me, "Do you have a problem"...??
I answered, "As a matter of fact, I do"!! "What would possess you to look at my
beautiful daughter with such disgust"?
This woman answered, "In my day, she would have been put away in one of them
hospitals".....
I told this woman, "Thank God we have come so far from "your day"!!
I then explained that Caitlin had Autism...she then told me how you didn't see
those folks when they were growing up...."they either lived with their folks or
were put away in one of them places".....

If you type in the words "State institutions" or "State Hospitals" and read about
these places where they put the "mentally disabled" or "Mentally Fragile" patients...
you would see where they started out to be nice replacements for home living, but
soon became so over-crowded with the "mentally unstable"...they became "horror
houses" for the disabled.
Wall-to-wall children and young adults....most labeled "mentally retarded", because
the diagnosis of Autism was not yet discovered. I truly believe these non-verbal, non-toilet
trained, rocking and head-banging children would have been labeled autistic now.. They
would have the wonders of an education and therapies that were non-existent then.
They would now be able to be functioning adults, instead of the majority of them
dying young in a place where no one could see them....hidden behind large brick buildings
with very high stone gates.....

Every time I go out, I see these amazing humans and thank God were are walking and
working amongst them...This gives me great hope for the future of our children with Autism....
because, believe me....they will become adults, just like the Autistic children that have come
before them. Luckily for them, they are no longer hidden by blind eyes!!!!

WHAT AUTISM ISN'T....

I received an email a few days ago about an article written locally, on the Autism Hub email list. A Hub blogger wrote about the story in Austin Woman's Magazine titled What is Autism?

(http://daisymayfattypants.blogspot.com/2009/04/what-is-autism-well-it-aint-this.html) 

In case you want to read it...What is Autism?
I was so incensed by the article that I had to write the author.

This is my first email I sent...
What Is Autism? Autism is a neurological disorder. It is not GI issues !!! It is not the "unethical and untested" treatments given by doctors at The Thoughtful House. Autism is not heavy metal poisoning or too much toxicity in the body. What Is Autism? Autism, in my house is age 18, severe autism, junior at regular high school with an aide...honor roll. Age 14, Aspergers..regular high school honor roll. Age 12, PDD-NOS..regular middle school....honor roll. Age 9, PDD-NOS..regular elementary school...honor roll. Age 8, Severe Autism, regular elementary school..lifeskills program with inclusion. It is not sedation with a colonscopy. It is not the elemental diet fasting. It is not Hbot chambers. It is not chelation. It is hard-working therapists who work hard to help our children be able to live in a society that wants to "cure" them so desperately. My children are not broken, they need to adapt to a society that so readily wants to make them better. They are pretty amazing to me already. If you really want to see autism, give me a holler... I will introduce you to some pretty amazing people...

This was my response from the author...

From: Darline Turner-Lee To: Mom26children@aol.com Sent: Mon, 20 Apr 2009 2:39 pm Subject: RE: What is Autism Dear Ms. O'Donnell, As the writer of the "What is Autism" article, I am responding to your editorial comment. First off, Autism is classified as a neurological disorder, but that description is believed by many clinicians who work with children with autism to be incomplete. There is overwhelming evidence that many of the neurological manifestations of autism are the result of abnormalities in affected children's gastrointestinal tracts and immune systems. Many scientists and clinicians, those of Thoughtful House, The CARE Clinics and others believe that doctors have to look at and treat the other systems in order to effectively manage autism. As a mother of 4 children with Autism Spectrum Disorder, I am sure that you have seen a wide range of symptoms and had to try a wide range of treatments in order to help your children to be able to function and mainstream to the high degree that they are currently. Thankfully for you, you found conventional treatment plans and therapist that have worked for your situation. Unfortunately, that has not been the case in many other situations. For many other families, when conventional treatments and therapists gave them no hope at all, using alternative treatments such as dietary modification, chelation therapy, Hyperbaric Oxygen, supplements and others has meant the difference between their children being able to focus and mainstream into public schools and being unable to function, interact with others or to participate in society. It is not anyone's right (yours included) to declare that a treatment is wrong or ineffective if they have not used it, it was not effective in their situation or if other people are using it-whether successful or not. Parents of autistic children, like parents of children with any type of medical disorder, are simply trying to get help for their children. When one treatment or therapist doesn't work for them, they must move on to something else. Every parent makes difficult decisions for their children. These are choices that many parents made and while you and others may not believe in the treatments offered by these facilities, that does not mean that they are not valid, are not effective or that they cannot be discussed. The doctors at both Thoughtful House and The CARE Clinics are not practicing outside the scope of skill, they are not doing anything unethical nor are they harming the children that they treat. They provide ANOTHER MEANS by which children on the Autism Spectrum Disorder can manage their symptoms and be able to focus, control their movements, learn and become integrated into our society. I found that to be worthy of reporting and so I did. What you don't know and what will be presented in Part II of this series is that the aforementioned "alternative" therapies in conjunction with therapies such as Applied Behavioral Therapy and DIR Floor Model Therapies are giving children a chance at functional independence. So no, The work of dedicated therapists is not discounted. They will be presented. Autism is a multifactorial disorder and many therapies have to be integrated for treatment to be effective. We are all individuals and what will work in one person is not guaranteed to work in the next. If we become so narrowminded as to believe only what we can see and only what resonates with our belief systems we are going to miss out on a bounty of good therapies and I don't want that to happen. Thank you for your response. Darline Turner-Lee Physician Assistant, ACSM Clinical Exercise Specialist, Health Care Writer Next Step Fitness, Inc and Bedrest Comfort & Care 6705 Hwy. 290 West, Ste 502 #283, Austin, TX 78735 www.nextstepfitness.com www.mamasonbedrest.com darline@nextstepfitness.com darline@mamasonbedrest.com 512-288-0827

My response back to her...

Thanks for your reply. I must tell you, I have 5 autistic children, not 4. Your article was titled "What Is Autism"? You did not define it. You put what The Thoughtful House decided it is. Autism is not defined as gastrointestinal. No where in the DSM-IV is gastrointestinal listed. Autism is not toxic overload. That is what The Thoughtful House is defining it as. I found it very irresponsible reporting and yes, that is my opinion. 2 of my children are severely affected by autism. My oldest, 18 years old... and my youngest, 8 years old. My oldest received all vaccinations...my youngest received NONE... My 14 year old has Aspergers. My 12 year old and my 9 year old were both diagnosed with severe autism and now are PDD-NOS...both fully inclusioned in regular classrooms in regular schools. Why is this not being reported? They did not receive any chelation, any biomedical interventions, any Hbot any B12 shots, and any ABA or RDI. They have not been physically invaded through colonoscopies or lumbar punctures. What they did receive was OT, Speech, Play and Physical Therapies with a stress on Sensory Integration. Why is this not being reported? Why, because it is not sensationalistic enough, that is why. If I sound angry, I am not...I am just irritated with the media's need to represent Autism in a one deminsional way..the biomedical Jenny McCarthy-Thoughtful House way. That is not good journalism, but makes a good story, right? There is a new program starting at the University of Texas called UTAP- University of Texas Autism Program. They implement Sensory Integration Therapies and have found great success. I hope to heck they will be included in future media reports..you know, fair and balanced. Unless you have a child on the spectrum, you have know idea what some parent's will do to cure their children. Places like the Thoughtful House know this. They happily take the money these parent's are willing to hand out for false promises. I am a mother living in Austin and believe me, your magazine does not represent me. Jeanette O'Donnell

PRESENTING AUTISM POSITIVELY...

I am on a mission to present Autism with a positive approach. No more sad, impossible stories about autism. No more watching children have meltdowns on television for me. That is all that television and newpapers want to show.

Nope, I am on a mission to show a positive side to autism....I know, I know...Autism has its downside....all life does. It is called life.

No one, not even the most "normal" person has it easy. We all have to get along with people who do, or do not, want to get along with us.

I ran into an old friend from school at lunch today. I sat and talked with her and her mother for over an hour (I did not intend to , but I got to rambling)...I noticed a mother walk into the restaurant with her little girl (who has Down's Syndrome).

When they got up to leave, they walked by our table. I said, "What a beautiful child". Her mother looked into my eyes and smiled.

I hope people do not get the impression that I say these things to get a pat on the back...

I say these things because I want people to be aware of their surroundings and that their are differently-abled people everywhere.

Their parent's need to know that we care and we are there to help....

My friend Cynthia said, "Wow, that was amazing how the Mother connected to you"...I told her I have to talk to everyone, but especially parent's with children with disabilities. They need to know that they are not alone and that people see the beauty in their children.

I left there and went to my grocery store. As I was leaving, I heard buzzing..there was my other new friend Andrew (whom I met last week)...I said, "Hi Andrew"...He said, "Hi Jeanette"...my day was made..he remembered me.

If media will not portray our children with all of their beauty and everything that goes with it...not just the gloom and doom...then it is my job to do so.

Get ready America...we are coming...we will be stronger than any Warrior Mom...we have been around longer and we know the drill. We have age and wisdom on our side...we have withstood the good and the bad...we have met challenges and won. We will win the battle of the media also.

Does anyone know Oprah's direct phone number?

AUTISM, LIES and MONEY...

After watching Jenny McCarthy and her crew of puppets on Larry King Live Friday night
(and a few times after that..just to make sure I was hearing them correctly)...I have come to
the conclusion of the reason for their being on television...

MONEY, MONEY, MONEY, MONEY....

If you go to the website, mentioned on the show (and no, I will not mention it here)..you get
directed to a package sold by the good Dr. Kartzinel..for the incredibly low price of $219.80 +
shipping and handling (of course)...
All products followed by this disclaimer..
These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease.

As if I would be surprised the FDA would approve anything they sold.

My problem is this...
Jenny McCarthy and Dr. Kartzinel have hit every talk show to #1..sell their book
and now #2..to sell their "supplements"...

Jenny McCarthy has stated her son is 100% recovered...100% cured...
BULLSHIT !!!!

JennyMcCarthy's son has minimal eye contact. He repeats phrases. He walks on
his tippie-toes. He attends a non-mainstream school, in his home. According to
Jenny, he is still receiving chelation (why, if he is cured?).

Jenny McCarthy has a beautiful son. That is not to be diminished.

Jenny McCarthy has a beautiful son with Autism, but to say that would stop the
sale of a lot of books and television appearances.

Our daughter Erin, 12 and our son Patrick, 9 were both diagnosed with severe autism
before their 2nd birthday.
Now, they are both PDD-NOS..they are non-distinguishable from their peers, in regular
classrooms, with neurotypical peers. They play amongst them and learn amongst them..
but, they are still Autistic.

When self-promoters like Jenny McCarthy sell the promise of cures and recovery, they
are not only lying to themselves, but to the many parents who are buying (and I mean
buying) into their bull...

I have been through all that is to be offered by the best and the worst of Autism...
we are now viewing the worst. I pray that I will not have to view her for much longer.

WHERE ARE ALL THE ADULTS WITH AUTISM?

HANDLEY: I want to talk about this issue of autism prevalence. It's going to be shocking for parents to learn that the CDC and the AAP don't actually acknowledge that there's been a real rise in autism cases. Larry, the Department of Education in 1992, 16,000 kids were getting autism services. Today 225,000. That means in 1992, they were missing 93 percent of kids with autism. Where are all the adults with autism? They don't exist.These numbers are real. But if you never acknowledge there's been a real rise, you don't have to find an environmental agent that caused it.

Mr. Handley, if you would like to take some time, I would love to introduce you to some adults with Autism...

In 1971, I had my first job...I was hired to babysit a family with a 3 year old boy and a 7 year old girl. The 3 year old boy had severe autism. He rocked, he flapped and he was non-verbal. He would now be 41 years old.
In 1982, I worked in a residential treatment center. The dorms I worked on had teenage boys and girls, initially diagnosed with Mental Retardation and then later, the Autism diagnosis was added.
These teenagers would now be in their late 30's and early 40's.
When the residential treatment center closed, they were sent home to find other facilities or in group homes....

In my neighborhood alone, there are 4 group homes that house 7 autistic adults in each home..that is 28 adults with Autism in my neighborhood alone...not including my child who is now an adult with Autism.

Mr. Handley, you singlehandedly have discarded a very large community of people living and working in our community. I believe you don't see it because you don't want to.
If you admit there are actually adults out in the world with autism, your little conspiracy will be shot down. All of the propaganda you spew at your sites will be discredited.

http://www.ageofautism.com/2009/04/from-cnn-live.html#comments
A mother writes on AgeOfAutism...
Mr. Handley discredits families of adult children with autism! He stated tonight on the show that there are no adults with autism! Shame of you for spreading your lack of knowledge. My son is 26 years old and has a diagnosis of autism. And shame on you for ignoring the years of hell our family and others like us has endured. When he was diagnosed 22 years ago, the criteria was so narrow that only the most severe could fit that label. Although my son was severe, they would not label his as having autism, but only "characteristics". Many children had autism back then, but were labeled MR! Go to the instituions and you will see the truly autistic adults that were mislabeled MR and mentally ill.22 years ago, I started reading about the MMR link; then the mercury link; now the huge vaccination link since you can no longer blame the MMR. Well, when my son was vaccinated beginning in 1983, there were less than 10 vaccines in the schedule. And guess what??? He is still autistic as are all of his former (now adult) classmates!

This was a response from a parent who is trying to discredit the mother who wrote the above letter to AoA...Nice huh?

Also, to Fonda Watson: If you are indeed a parent to a child 26 years old, I can relate as my child was born before the epidemic numbers, but right when the increase in thimerosal took place and the numbers did start to increase (1993).
How though, did you 22 years ago (1987) start "reading about the MMR link; then the mercury link; now the huge vaccination link since you can no longer blame the MMR." I'm sorry but that is just not accurate. You could not have investigated as no one knew that vaccines or environmental factors (mercury) were the cause of autism in 1987.

Ms. Conrick, if you are indeed a parent of a child with autism, how come it is so easy for
you to discredit a mother who has far more experience than you in living with an autistic
child?

This is the reason my blood is boiling right now....
I am amazed by the hatefulness that is spewed to the parent's who have lived
with a child with autism for over 20 years.
We have so much to learn from these mother's, but instead,
the mother's of younger children with autism want to call them liars.

The comment looks very similar to an Anonymous comment left on my blog
just yesterday...https://www.blogger.com/comment.g?blogID=32355297&postID=1998993530597266901
If you do work hard to help them, than that is admirable. If they are, in fact, doing so well in school, then I'm really happy to hear it. I do not for any child to struggle with Autism, regardless of whether or not I agree with their parents methods.

Of course, people who comment anonymously are really not to sure of their own
convictions, are they?

My hope is, since Mr. Handley so callously made this comment on television, that
every parent of an adult child with autism..or an adult with autism..comes forward and
lets him know they are here, they have been here, and they are tired of being ignored.

I will gladly represent those whose voices you are trying to silence...

I recently had a conversation with a 23-year-old male with autism. I asked him
what he would like to do with his life...he has one simple request...
"He wants more services for adults with Autism".."he wants to take college courses,
get a better job than cleaning tables at a local restaurant, and he wants speech therapy
past the age of 22 years old...."

I do not think that is too much to ask....

So, instead of saying the adults with autism do not exist...why don't we acknowledge they
do exist and make their lives accountable?