9 posts tagged “autism”

The band, Five for Fighting, is making a generous donation to Autism Speaks for *each time* the video, (click link below) is viewed. Please click the link below and view the video and share the link with your friends.

As a mother of two children with Autism this video almost broke my heart to watch. It's a beautiful song, and the video is so touching...

View The Video Here

For those of you who have been reading my blog for the past year that I have been on VOX you know that I am the proud mommy of two wonderful boys on the Autism Spectrum. Today Oprah had Jenny McCarthy and Holly Robinson Peete on her show. They are both mommies to Autistic sons who came on the show to tell their stories. It really brought back a lot of memories of the early autism days for our family. So I thought I would come here and share some more...

Christian and Aaron are fraternal twins who are 8 years old. They were born 16 weeks premature and had quite a fight from birth until their first birthday to stay alive.  At the age of about 18 months we took them in for their MMR/DPT shots and within DAYS I knew that something DEVASTATING had happened with Christian. He began flapping his hands, banging his head on things, and scraping his forehead on the floor until it bled. He ceased to speak, smile or make eye contact. (all of this occurred within a short few short days of having the vaccinations) My little boy just left...went away...to where I still don't know.

Needless to say I was horrified and wanted to know what was going on but none of the doctors we spoke to could give us a straight answer. We took him to the Pediatric Developmental Clinic in Houston at Texas Children's Hosptital for testing around the age of two. After a few short weeks we had our Diagnosis. Christian was diagnosed with Profound Autism. It was one of the most heartbreaking days I have ever experienced. It truly felt like a death sentence for him.

Since then I have learned that Autism IS treatable.(at least for the families who have good insurance and a LOT of money) Some would say CURABLE but I have my own questions about that because I have not found a cure yet. What I WILL tell you is that it wasn't ANY of the doctors that gave me hope about Christian. They all said the same thing....

He will never speak....
He will never be able to learn like other kids...
He will never show affection....
He will be profoundly retarded....
And the most shocking thing of all they said to me...80% of all marriages that get an Autism diagnosis with a child end in divorce.....

Needless to say It was hard to have hope after hearing all of that...

But then I attended the University of Google....That means that as soon as I got home I got on Google and typed in Autism...and I read EVERYTHING I could find..I ordered every book I could get my hands on about Autism, and READ THEM....I consider myself to be quite the expert on Autism...

It was only a couple of years ago that we got the same heartbreaking diagnosis for our other twin Aaron. His Autism isn't nearly as severe as Christian's but it is DEFINITELY noticeable...and I am POSITIVE it came about from the same shot that Christian got.

And here's a scary statistic:
When Christian was diagnosed at the age of two with Autism the statistics said one in 150 children would be diagnosed with Autism. TODAY that statistic is one in 94 boys will be diagnosed with Autism. What is it that's fueling this increase? I don't know. I would guess that it has a LOT to do with immunizations. I know I am not alone in this belief.

We have tried everything possible to HEAL Christian and Aaron. Special diets, ABA, Floortime, Speech Therapy, Occupational Therapy, Physical Therapy, Enzymes, you name it...  Did any of it help? Well, to be honest not really....I do think it MIGHT have helped if we could have afforded to continue with it.

Treating Autism is PROHIBITIVELY expensive if you don't have insurance(which we don't). (just one hour of ABA therapy cost around 60.00 here in Texas. and kids with moderate Autism like Christian has would require 40 hours a week of ABA to see any good result...you do the math on that..)(around 2400.00 per week per child)

In a way watching today's Oprah only made me feel guilty and sad.Sad that I couldn't afford to provide for my sons what Jenny and Holly could afford to provide for their sons. I am thrilled that their sons are better, and sad that mine may never get there. It just seems so unfair sometimes.

In a way I've just had to learn to accept that this is the way my boys are. They have Autism. And although I can do things to make their lives easier and more comfortable we just simply cannot afford to CURE them, and time is running out. Science says that the sooner you nip it in the bud the better your chances are of a good outcome...Where does that leave us? Where does that leave the moms who aren't celebrities?  I don't know. I guess you could say I have mixed feelings about it all.

There's a part of me that wants to fight tooth and nail for my boys, and there's a part of me that's TIRED. There's a part of me that's hopeful, and a part of me that's hopeless. I do know this. We HAVE beat the odds so far. Christian does speak, he does make eye contact, and he does show affection. He no longer bangs his head or flaps his hands, and he is in normal classes at school with an aide. 

Aaron is in normal classes without an Aide, although heavily medicated for his ADHD, OCD and Autism, and he struggles.

And that divorce statistic? Yeah we beat that too...

I know this much. I won't ever give up on them. I will always love them, and I will always be there for them. I have to hope in my heart that that is enough.

I have been a subscriber to Mother Jones magazine for about a year now.

The cover article on this month's issue made me stop dead in my tracks and my jaw hit the floor in utter disbelief.

School Of Shock

NEWS: Eight states are sending autistic, mentally retarded, and emotionally troubled kids to a facility that punishes them with painful electric shocks. How many times do you have to zap a child before it's torture?

Life has been BUSY the past week or so...

School homework for the boys is in FULL SWING at the Clickarosa....we spend approximately 3-4 hours every evening at the table doing homework... I ENVY people who have "normal" kids that you can sit down at the table and they will do their homework on their own... That is not the case with my two Auties...oh no..you practically have to sit on them to keep them on task....but it's worth it.

Christian has developed a new "scary" behavior....he has started to pull the hair out of his head. I saw him do it for the first time yesterday...We were doing homework and he got stuck on a math problem and just yanked a whole handful of hair out of his head and dropped it on his paper. I have a call in to the doc this morning to talk to him about this. Life is NEVER boring with "special" kids in the house...

Aaron has been seizure free for two weeks! (looks around trying to find some wood to knock on) Seriously though...now that I said that out loud...it will happen today...mark my words.

I have made it a FULL WEEK nicotine free. Apparently my body is not happy with me as my COLON has ceased to work....Who would have ever guessed  that nicotine was causing my colon to work all this time??  I have tried everything...walking...fiber...increased water consumption...increased COFFEE consumption....today I bit the bullet and took something. We'll see how that works out...(apparently this is common in people who quit smoking and it usually works itself out within 14 days...however I think I will explode if I wait 14 days for it to work itself out!)

 Some other things I have noticed since I quit....I smell EVERYTHING around  me now...even the not so good stuff....I have noticed that my husband needs better deodorant. Food is starting to TASTE better. As if it were possible for Chocolate to taste better than it did?  I have noticed that the more time that passes since my last smoke the less I miss them. Seriously...I am on day 8 and I can count on two fingers the cravings I have had already today...and they were SMALL cravings...

I've been back on the Wellbutrin for a week. The only side effect I don't like? It's messing with my sleep. I USUALLY sleep like the dead, this past week I've been waking up several times a night, and having trouble going back to sleep.
I'm taking 300mg a day now and I think I'm going to talk to the doc about taking 300 in the am and another 150 in the afternoon. It is working great to kill my appetite, and I'm having URGES I haven't had in a LONG time...it's a WIN WIN situation!!(I would think that Bart would enjoy having a skinny nympho for a wife huh??)

I had to go and have 2 root canals yesterday morning. I had a back molar that was cracked for months...well I grind my teeth in my sleep and especially now because of the Wellbutrin...well night before last I was grinding away and broke the tooth off....exposed roots hanging out..OUCH!! Not to mention that I broke a molar on the other side.  So he took me in as an emergency walk in and did two root canals on the spot. One on the top right molar and one on the bottom right molar. (Apparently my jaws are VERY strong....and if I keep this up I won't have any molars left.)

I love hydrocodone....Everytime I go to the dentist he gives me vicoprofen. It's kinda like Vicodin, but instead of having acetamenophen(tylenol) in it it has Ibuprofin(advil) PLUS a higher amount of the hydrocodone part... Most people take vicodin and vomit and sleep. NOT ME!! Gimme a Vicodin, and I'm "itchin and twitchin" I get boundless energy, and become hyper productive.  It's AWESOME!!

So...that's my update! I'm off to do my workout and take the cat to the vet!

Normally I visit Postsecret weekly on Sundays...

I have noticed that over the past few weeks I have sort of forgotten and it occurred to me that it might be that I only look at postsecret when I am in a bad place emotionally or spiritually...looking for proof that there is someone out there that is going through the same things...

The past week has been fantastic....I have been productive, happy, and damn near joyful..and yes..even at 6am which is apparently my new wakeup time since my body has decided to wake me up at that time with boundless energy.

I stopped by Postsecret a few moments ago and these for some reason REALLY stood out to me. I will explain why underneath each one...

I have been feeling this way a LOT lately in reference to my son Christian who is Autistic. Over the past few months he seems to have been regressing quite a bit. Sentences contain lines from movies instead of meaningful dialogue, terrible tantrums, banging his head on things in anger. It's a scary thing....I am hoping that once we start school again and he has more of a routine and schedule things will settle down. If things don't settle down I will have to accept that this is just part of who he is...and find the best way to cope with it.

Somehow..I have managed to hold myself, my kids, and my family together these last couple of months.

It hasn't been easy...but for some reason today it was like a switch went off. All of a sudden I had this peaceful feeling that everything was going to be ok. It was a WELCOME feeling to say the least.

I don't know if it's a shift in attitude, a renewed sense of determination, or faith, or a combination of all of them, but SOMETHING changed today, and told me that it's all going to work out just fine.

Aaron, although still having seizure episodes regularly is going to be ok.

Christian who seems to be having some sort of regression deeper into his Autism is going to be ok.

Bart and I even though we piss each other off royally sometimes, are going to be ok.

And Me....I am going to be OK. Even though I feel sometimes like I can't take one more single blow, know that more blows will come, and I will still continue to stand and fight despite them.

A Lot..

Most of you don't know this..but one of my twin sons Christian has Autism..

He was diagnosed at the young age of two. It was one of the most heartbreaking moments of my life even though I already knew that was what was wrong with him.

My twins were born prematurely at 26 weeks gestation. That's 14 weeks premature. They were the tiniest things I have ever seen. It was VERY touch and go for awhile.

Telling Secrets

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This is a photo of them at 3 months old..still in the NICU...it was one of the first times they got to be together since their birth..due to the risk of cross contamination.  We knew that they would both face many hurdles and challenges due to their prematurity but they beat the odds and started to develop normally.

By the age of a year or so they were nearly on target with their development. We thought we were over the hill.

I took the twins for their 18 month shots on schedule..not thinking a thing about it. Now I wish more than anything I hadn't done that. That was to be Christian's undoing. My beautiful boy was so outgoing, smiling all the time, talking, playing with his brothers all the time...

After his shots he was cranky as usual, but then I started to notice changes drastically..Over the course of a couple of weeks he stopped making eye contact with me...or anyone for that matter...he had terrible tantrums, started to flap his hands and twirl, he would crawl on the floor scraping his forehead on the carpet all the way across the room until he had a rug burn, he would turn the toy cars over and spin the wheels on the bottoms of them and stare at them for hours....he stopped smiling and saying MOMMY.

We took him to specialists, who all told us the same thing..."Looks like Autism"

My heart broke..

But then a strange thing hapened...I got PISSED. Really Pissed.

I started to think back to what might have caused this...

When did this all begin?

Vaccination Day...those words rang in my head like the liberty bell...

I got on the internet and found I wasn't the only one this had happened to...there were THOUSANDS of families like ours who had been poisoned by vaccinations. I decided I had to take action...

This is what caused me to begin studying Naturopathy....I looked at special diets for him...removing all traces gluten and casein..(both derivatives of wheat and dairy) which gave no improvement...we did Feingold..(no artificial colors, or sugar, or additives) no improvement... we did digestive enzymes, we did special therapies..speech, art, floortime, physical therapy, occupational therapy....hey, I've become an expert at Autism...you HAVE to when you have a child affected by this TERRIBLE disorder...

Autism has STOLEN my son from me..

And yes...all of the therapies we have done with him HAVE helped...he has started to come back to me...he can now look me in the eyes and tell me he loves me...which until you have lost that in a child of yours you never really realize how much it means...and today it still brings tears to my eyes when he says it..

BUT-

To this day it PROFOUNDLY affects him...My friends tell me...oh but he's doing so much better..he talks now...

YES he talks...but does it make sense? Does repeating the lines to the Brave Little Toaster over and over again make any sense...does it have MEANING? Maybe...somewhere in his head it makes sense...but I need a translator to get "mommy, can I have some milk?" from..."Patches...we need more power.." 

TODAY- Christian is a sweet child...full of surprises around every bend...he sees the world with HIS OWN eyes..I just wish sometimes I could share his visions...really understand what he is seeing and how he sees it...GOD KNOWS i've tried...I have had to learn how to be a observer in his world...almost like someone not wearing the right glasses to read between the lines...

It's ok...he's my boy..and he always will be..and at least he has learned how to say "I love you Mommy" again..

I found a poem on the internet the other day that really brought tears to my eyes...I could SO identify with this mother...

I will share it here for you:

The Poem can be found here:

Poem  It was written by a woman named Jenakajoffer.

Alone in Autism 

 
It could be said that your little neurons 
are short circuiting, 
that your chromosome anomaly may not
be related, 
and you just might be the most perfectly 
beautiful person on the planet, 
but your conception to say the least, 
was not immaculate. 
   
Your wires don't connect, 
the earth's sounds,  too profound;  
sudden changes make you sick  
and the anxiety you eject 
is mistaken 
for just a tantruming brat. 
DAN! Doc says you're full of poison, 
that mercury migrates 
from your toes to your hair 
and you need a seven-year flushing, 
but chelation is pricey 
and I still don't understand 
all your fussing. 
   
I'd want to go back; 
steal the vaccines, contaminated 
and your poor black eyes that glaciated. 
I would try 
just to see if you'd be different. 
I'd shut the world down for you boy, 
bind and gag the clones 
of Charlie Brown's teacher, 
suffocate the horns and sirens, 
and the distracting roar of monstrous appliances. 
I'd paint the sky 
with coal 
if the lights were too bright 
and give you a hundred flashlights if you get scared. 
I'd want to buy you one of those healing dogs 
that would cost a many thousand.   
Bet you'd love that. 
   
I'd feed you chicken and fries, 
chicken and fries 
     chicken  a-n-d  fries, 
for the rest of your life while you sing it 
over and over in the tune of "Jingle Bells". 
If I could, I'd change my name to Mother Nature 
and keep your favourite season for all your days. 
No more flip flops one day, boots the next- 
here's a sweater, and some long, long socks, no... 
I think you should wear shorts, 
or wait... 
you can't ride your bike today, it's raining! 
Isn't it just when you figure it out, it changes again? 
   
I'd painlessly pull out your teeth 
so you wouldn't have to endure 
the spicy taste of paste 
or the distressing shocks of a toothbrush. 
I'd give you "bald is beautiful" medicine so you'd 
   
never 
have 
to 
scream 
   
at the hands of a hairdresser again  
as razorblade prickles stick to your neck. 
I'd rid the earth of all the bees and mosquitos that stalk you 
so you'll never have to lock yourself inside, 
so you'd never have to cry. 
You'd never be set apart in school or have to look another teacher in the eye, 
or be threatened that you'll be late for recess if you don't hurry up and do your printing! 
   
I'll come with you 
to see the icy rings of Saturn and you'll see 
just how small is Pluto, 
and that ship you talk about that would keep you warm there, 
you will build it. 
I just wish I could let you sit in the basement 
all day with legos
without feeling like you're missing out 
on more important things... 
Friends? 
No. 
   
There is no Rainman. 
There is you, just a boy 
in a world that is strange, 
sitting on a spectrum of your own personal genius. 
You introduced me to this world, 
I don't understand it 
and I am afraid. 
I am alone with you my son 
but I will never let go. 
   
I hate Autism. 
But I love you.
 

I have no life...

Seriously.

I used to think I was a moderately interesting person...but since I have been going through my blog and reading my posts over I realized that I am in fact quite boring...or at the least badly in need of some adult interaction...maybe that's why I like vox so much...it is truly interactive..

You see...I have two blogs that I post on...this one and another one on blogspot...the blogger blog I have had for two years...there is TONS of stuff there and I can't bring myself to abandon it...but I don't want the readers who have that link to have this one....this is my "secret" blog...I get to really rant here and not worry about "certain people" reading what I have written and bitching to me about it..it's freeing...(lately I have been crossposting to that one from this one though so if you click through to it don't be surprised that a few of the same posts are there that are here..)

Here is a brief snapshot of my life from day to day..

I am a stay at home mommy of 3 boys...and that is a FULL TIME JOB just in case you didn't know that...especially since two of my boys are considered to be "special needs". Yep..I have twin boys who are both in the Autism Spectrum...Christian is moderately Autistic...he has all of the signs of classic autism...while Aaron.. has been diagnosed with Aspergers..a milder form of Autism..as well as ADHD...they are only 7 years old and they have challengeed me more since their birth than I have ever been challenged in my whole life...

And then there's Austin..my 9 year old genius...he wants to be an artist, or a cop, or a signmaker(like his daddy) when he grows up...but I am sure all of that will change in the end...he is very good at drawing and building things with legos, and he loves riding his dirtbike and four wheeler around our property..

And then there's Bart my husband...he is a signmaker and owns his own business here in the town we live in...he works ALL THE TIME...as a matter of fact he probably won't be home until well after midnight tonight..which means that I spend A LOT of time alone with the boys..

My life is basically taking care of kids, cleaning, and blogging, sounds fun huh? That explains why I post like 10 times a day...there's nothing better to do..

I'm not whining really...I like my life....it's simple..and predictable....but what I would give for some excitement...stimulation...something to make me feel alive...I keep telling myself that when the kids are older and we can leave them with people who can actually handle them we will get to go away and have a honeymoon...Bart and I have been married for nearly 10 years and have only been away without kids once in that time period..really...

So...now I must get back to reality...I have chicken nuggets and tater tots in the oven and the timer is about to go off...Maybe after I get the kids fed I will put them to bed, and then find a nice book to read to quiet my head...