Finally My Son is..."Finding the Words"

Since we adopted our son from Russia in the summer of 2005 we have struggled with him. From his fingertips to his toenails the child is a medical mystery and developmental mess.

Did we have any clue when we adopted him? Sure, some. We knew he would be delayed because most institutionalized children are. However, just before he turned 3 the local school district told us that they estimated his developmental age to be between 13 and 18 months. We were floored.

Little Pickel has been diagnosed with Institutional Autism, H Pylori, Severe Gastritis, food allergies, Gross and Fine Motor Delay, Receptive and Expressive Speech Delay, Post Traumatic Stress, Separation Anxiety, and Sensory Processing Dysfunction. He has also had three surgeries; ear tubes and 2 GI scopes.

He is only 4.

The first several months with Little Pickel were pure hell. He had night terrors that lasted 45 minutes to an hour every night (he still has these 2-3 times a week). We discovered double ear infections that resulted in ear tubes. We also discovered some creepy crawlers that made the trip home from Russia with us. They were NOT very welcome in our home.

Developmentally, he did not progress quickly. By his 3rd birthday he had only about 100 words and could not put phrases or sentences together. He was just beginning to run without looking like an otter (or falling all over himself) and he screamed at me every time he tried to ride his tricycle (because he was so frustrated).

We tried everything for him. We rid him of his H Pylori (a bacterial infection in his gut), we removed his problem foods (gluten, casein, bananas, oats), and we worked diligently on his sensory issues. Still, he seemed locked in his own world...screaming uncontrollably when things were not right, when I would back up the car instead of go forward, or if he could not have graham crackers to ease his tummy aches.

He had orange stools up to 10 times a day, acid reflux, gas that could light the entire house on fire, sleep problems so severe he was getting close to (maybe) 5 hours of sleep a night, no social skills, aggressive behavior so severe that I had to learn to physically restrain him or get hurt myself (or worse, allow him to hurt himself), and bum rashes so horrid we resorted to Bag Balm, a cream used for milking cows.

So, when we moved back to Chicago in the summer of 2006 it was like a weight had been lifted. He qualified for Early Childhood, we found the Pfeiffer Treatment Center and started him on a vitamin chelation to rid him of his heavy metals, yeast, and to balance his bacteria, and our parents were both there to help us with him.

Since our move Little Pickel has thrived. One might say he is "Finding the Words".

I have said many times on my blog, Discussing Autism, that there is no cure for Autism. Because Little Pickel's diagnosis is Institutional Autism and not organic autism, he can be "cured" and he can recover.  Unfortunately, there are hundreds of thousands of children with autism who will not be cured.

However, there are some children like Little Pickel who have been cured...and they have Autism.

The documentary, "Finding the Words"  is their story. It is the story of eight "perfect babies", each given a grim diagnosis of autism spectrum disorder (ASD) as toddlers, whose grieving families fight prejudice, misinformation, and despair to get their children well again.

Written and produced by Elizabeth Horn Nelson, the documentary has really picked up steam because there are parents out there like me who have hope. Horn Nelson is also the co-founder and president of the Autism Recovery Consortium and even the  Huffington Post picks her up. You can view the trailer for the documentary here.

According to Nelson Horn in a 2005 interview, "The first impression you get with this diagnosis is that you're on your own,'' Horn said. "Even though there were resources, there was no sense of direction anyone could give as to how to proceed.''

For over a year that is how we felt with Little Pickel. Then, when we had no where else to turn we found The Pfeiffer Treatment Center and finally got our answers. They were the only facility willing to perform biomedical testing for us. You can read a very scientific explanation here.

How much is Little Pickel talking now that we did a vitamin chelation? So much so that there are times he won't shut up! (Perhaps he should try out for Autism, the Musical!)

He is constantly chattering about going to school and how much he likes his new teacher. He sings Twinkle-Twinkle loud and out of key as he is falling asleep. He is finally asking questions (but everyone is labeled as a she).

And occasionally from across the room or from upstairs I hear him yell..."Marcie, come here!" in a sing-sing song voice. 

Could you punish a kid for that?

*Please note that this chelation was a vitamin therapy chelation, not the controversial intravenous infusions of sodium EDTA chelation.

Marcie can be found at My Two Boys where she talks about waiting for her second child (yes, she is crazy) and Discussing Autism where life is always a conundrum.

Comments

[Jordan Sadler]

Wow, what a story, Marcie. I wish you all the best on this incredible journey.

I was excited to see your reference to "Finding the Words" because I (a fellow Chicago Moms Blog writer) am actually in that documentary! I worked as an SLP with one of the children who is featured in the film, back when I lived in the Bay Area, and was interviewed about 4 years ago when Elizabeth was making it. I got my 15 seconds of fame! I had the pleasure of being at the film's premiere with all of the families featured in it, and what a beautiful group of kids and parents they are. Have you seen the film somewhere locally??

[pickel]

There was an article in the Tribune this past week that caught my eye. Biomed, autism, and sensory issues are always on my radar. I would love to see it.

Oh, and I forgot to mention that Elizabeth's main contributors were from SV.

[pickel]

P.S. Jordan,
do you do free evals? :)

[Jordan Sadler]

Free consults to fellow Chicago Moms Blog contributors. ;-)

[Jordan Sadler]

Free consults to fellow Chicago Moms Blog contributors. ;-)

[katesanford]

Hi Marcie: Thanks for writing about this!

[Mary Anne Mohanraj]

Marcie, I just want to say how much I feel for you. I feel so frayed with a 'typical' baby -- I can't imagine how I would cope with one who presented so many additional challenges. I hope you take a lot of pride in your own patience and hard work!

[Mary Anne Mohanraj]

Oh, and to recommend two (light) books you might enjoy:

Mark Haddon, The Curious Incident of the Dog in the Night-Time -- I'm sure you've already read this, but just in case not, it's a brilliant, warm mystery, told from the viewpoint of a 15-year-old autistic boy. Absolutely wonderful book.

Elizabeth Moon, Speed of Dark -- science fiction set in the 21st century, with autistic adult protagonists who work at a corporation, valued for their pattern-recognition skills...

[Lydia]

Marcie, this is all too horribly familiar to me. However, I had to chuckle: until they were about ten or eleven, my boys couldn't master pronouns either--everyone was "he." Also, if the possessive of "he" is "his," then it stands to reason the the possessive of "she" must be . . .yep, "shiz."

[Selfmademom]

What an inspirational and amazing story! Thank you for sharing.

[Alma]

I am completely in awe of you. How do you do it?

[pickel]

Oh, ladies...that is just the tip of the iceberg.

Mary Anne, you call that light reading? I'm STILL working on Book 7 over here...waiting to find out what happens to poor Harry. I have not read either of them. Thanks for the suggestions.

And on the pride and patience issue; I suppose in retrospect I should take pride in what I have done for my son...in how much I have fought for him. But to me he is the true hero.

He is the one who has fought through the haze, downed the bitter medicinal concoctions, and battled me on my most grief ridden days...the ones where I could not fight off my desire for a "normal" child.

And still he shines through; his personality is one that makes people glow despite his disabilities.

I am so damn proud of him and how far he has come.

Here is a post I wrote about the light in his "orphan eyes" around his 4th birthday.
http://adopttwoboys.blogspot.com/2007/05/birthday-picture.html

[pickel]

Oh, ladies...that is just the tip of the iceberg.

Mary Anne, you call that light reading? I'm STILL working on Book 7 over here...waiting to find out what happens to poor Harry. I have not read either of them. Thanks for the suggestions.

And on the pride and patience issue; I suppose in retrospect I should take pride in what I have done for my son...in how much I have fought for him. But to me he is the true hero.

He is the one who has fought through the haze, downed the bitter medicinal concoctions, and battled me on my most grief ridden days...the ones where I could not fight off my desire for a "normal" child.

And still he shines through; his personality is one that makes people glow despite his disabilities.

I am so damn proud of him and how far he has come.

Here is a post I wrote about the light in his "orphan eyes" around his 4th birthday.
http://adopttwoboys.blogspot.com/2007/05/birthday-picture.html

[Mary Anne Mohanraj]

I promise you, "Curious Incident..." is light and sweet and wise and funny! You will love it...although finish Harry first! It could maybe have been trimmed a bit in the whole out-in-the-wilderness section, but the ending is very satisfying! :-)

[Laura Flake]

Wow!!! What a story!!! I have seen the results from Elizabeth Horn's work!!!

For any of you in the Connecticut area, the film is being screened at The Ridgefield Playhouse preceeded by a silent auction/cocktail party to benefit the National Autism Association and The Friendship Circle AND followed by a Q&A session with David Kirby (author of "Evidence of Harm" and Elizabeth Horn.

check out http://www.ridgefieldplayhouse.org/venue.asp?eventID=619 for more info!!!!!!!

[michael jones]

Great story! I found a cure for my yeast infection two weeks ago! I am so happy now!

[Amelia Treadgold]

Amazing story, so glad Little Pickel (unusual spelling! - is it Russian?) is doing so much better now.
I am sure many know this but The U.S. Department of Health and Human Services,
the federal agency that oversees the U.S. Food and Drug Administration (FDA) and the U.S. Centers for Disease Control and Prevention (CDC), recently 'quietly' conceded the first vaccine-autism case.
If you have not already read it then David Kirby's recent blog post on Huffington is a must see (He also wrote the definitive vaccines/thimerosal/autism expose 'Evidence of Harm' I guess you all know? -- But if you never yet read it -- please do so. Warning: you will be utterly disgusted at the way the US Govt, FDA, Pharamceuticals et al have behaved).
Kirby's post is here:
http://www.huffingtonpost.com/david-kirby/the-vaccineautism-court-_b_88558.html
I also recommend you read the powerful summary of the evidence in Robert F Kennedy's letter posted here:
http://groups.google.com/group/misc.kids.pregnancy/msg/4847350dae3bb353?
It appears that all vaccine related autism cases also betray the same bowel imbalance issues. The bowel is SO important and so easily abused. I believe it is the 'seat of health' and if it is damaged in early weeks/months of life due to chemical poisons (such as in vaccines) it can be a major task getting things back on track again.
Adults too have potentially massive problems once the gut is compromised and my opinion as a reseracher in the issues of Candida and Yeast infections, is that these 'little critters' can be the cause of many more serious problems.
The whole family ought to go through periodic Candida cleanse followed by a rebuilding of the good gut bacteria by using good quality probiotic. It can completely rejuvenate your health and wellbeing.
Hope all continues to progress positively.
AT