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...