3 posts tagged “christian”

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 survived the summer! (Mostly unscathed....)

On Thursday night we had "meet the teacher" night up at the school....and it went great! For the most part I think we got decent teachers this year( if you can possibly ascertain that information in the 20 minutes you get to see them on one evening with 500 kids running around)...

Austin got the coolest teacher of all I think....Mr. Foster. A young 30something clean cut, (pretty hot too), suit wearing dude...his classroom is full of lava lamps, and incandescent lighting( he doesn't use the overhead flourescents...he says the kids stay calmer in a more dimly lit environment and learn better without all the bright lights)..and he has a stereo he plays cool jazz music on while the kids are working...Bart and I are still taking bets on whether he burns or not...(hey jazz and lava lamps can kinda give you away ya know??)

I dropped off some emergency meds for Aaron's seizures at the school nurse's office along with a 20 page hand typed medical history, release for treatment, and emergency instructions. She said it was pretty impressive and she didn't think anyone had ever done that yet...LOL. (Leave it to me to be the overachiever!!)  She assured me that she had handled kids with seizures before and that Aaron would be in good hands while he was at school.

Today when we got to school we all walked in and walked the kids to their classes and as we walked out of the school I literally felt my whole body breathe a sigh of relief.

Today I am catching up on some shows I have let pile up on the Tivo. I cleaned the pool and swam a bit, had some lunch, and washed some clothes and dishes....I can't believe how quiet it is here!! It's SOOO NICE!

I leave to pick the boys up around 3:10....maybe I could get a couple of hours of sunbathing in before then??

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.