Tuesday, May 3, 2011

Won't and Can't

#3 Please remember to distinguish between won't (I choose not to) and can't (I am not able to).

"Is a zebra white with black stripes or black with white stripes?  Ask ten people or look at ten websites and you'll get twelve opinions.  Zebras give the impression of being white with black stripes because the stripes end before joining under the belly and around the legs.  But the hide of the zebra is actually black.  It's a lesson from mother nature that things are not always as they appear on the surface.

And so it is with many of the complexities of autism.  How do we distinguish between what our child won't do (chooses not to) and what he can't do (is not able to)?  Many "won't" allegations about our kids are behavior complaints: He just won't comply; she won't listen to instructions; he won't stop rapping his knuckles; walking away in mid-sentence or other odd, inexplicable or narrowly focused actions.  "Won't" and "can't" are not interchangeable.  "Won't," the contracted form of "will not," implies that his noncompliance is deliberate.  "Can't," the contracted form of "can not," acknowledges that noncompliance is not a matter of choice, but attributable to lack of ability, knowledge or opportunity."

From page 21 of TTECWAWYK

It is very hard to understand the difference in won't and can't if you do not understand what autism is and how it affects the brain and body of the child/person who has it.  They can sometimes lack function in areas that we take for granted.  This chapter is wonderful as it is all about figuring out the difference for your child and accepting that you will have to do things differently for them, but also celebrating them and who they are!  It is very important for the people surrounding the child to have the right attitude.  These children are still very capable of living fulfilling lives if given the chance to succeed!

Thursday, April 21, 2011

Sensory Integration

#2 My sensory perceptions are disordered.

"Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical.  Cognitive and social learning cannot break through to a child whose world is intrusively loud, blindingly bright, unbearably malodorous and physically difficult to navigate.  His brain cannot filter multiple inputs and he frequently feels overloaded, disoriented and unsettled in his own skin.

And into this shrieking, blinding hurricane of sensory acid rain we insert the expectation that this child "pay attention," "behave," learn, adhere to social rules which are mystifying to her, and communicate with us even though she has not the ability, the vocabulary and possibly not even the oral-motor capability.  Neglect a child's sensory challenges and you will never even get close to discovering her capability.  Sensory issues are that crucial to her overall ability to function."

Page 7 of TTECWAWYK (Ten Things Every Child With Autism Wishes You Knew)

"Picture yourself on the world's grooviest roller coaster. (If you don't like roller coasters, this makes the example even better.) Coney Island and Six Flags are great vacations venues, but how long could you do your day job while ensconced on the Cyclone, the Xcelerator or the Millennium Force?  Could you conduct that meeting, teach that class, be charming dinner company, write the report and clean the house while enduring the vertigo, the screams of fellow riders, the g-force of the rushing air, the unexpected drops and abrupt changes of direction, the sensation of hair in your mouth and bugs in your teeth?  It might be fun as an occasional thrill but admit it - you are ready to get off after the three-minute ride.  For many children with autism, there is no exit gate; it's a 24/7 affair and it is the very antithesis of thrilling."

Pages 7-8 of TTECWAWYK

This is an incredible chapter with so much great info.  When our senses are processed correctly, we really take it for granted.  It is hell for those who have issues.  Of course every child is different and not every child with Autism has sensory issues (I am sure even though every one of them that I have known of has had them.) and there are even more children with sensory issues that do NOT have Autism.
Personally, I would say that the sensory issues are our top issue.  Wyatt hears and sees things that we would never notice.  He overreacts to pain as well.  I can only imagine what it must be like to not be able to filter out all the extras..like the fly buzzing.  It has been said that some kids are able to hear the heartbeat of every person in the room with them!  That is just amazing and heartbreaking to me.  How can we expect these children to function at all if we don't address this for them?

Temple Grandin is a well-known author and has Autism.  She wrote "Wal-Mart is like being inside the speaker at a rock and roll concert."

Next time you are out and there is a child throwing a fit or running around acting excessively silly, before you give the parent a nasty look consider that it may be because of a sensory issue and not just bad parenting.

Wednesday, April 20, 2011

Ten Things

"Ten Things Every Child With Autism Wishes You Knew" is, in my opinion, a book every person should read.  It is short, very informative, and straight to the point.

Here it goes:

#1 I am first and foremost a child.  I have autism.  I am NOT primarily "autistic."

"Losing sight of the whole child, losing him behind a label, makes your life more difficult, as well as his.  Autism is not the cause of his foibles.  All children spiral through equilibrium and disequilibrium as they cruise the developmental timeline. Most children will at some point test limits, potty-talk in public, elevate stubbornness to Olympic proportions, flush Batman down the toilet, neglect hygiene and cry when they don't get their way. Attributing it all to autism is not only inaccurate and unfair, but it robs you of experiencing the aspects of your child's development that are in fact typical!  Again, all that is awful is not autism.  He has hopes, preferences, likes, dislikes, fears, and dreams just like any other child.  In time (and with lots of communication therapy) he will be able to tell you about them, albeit maybe not in words.

So keep those channels wide open. Every child deserves to start his or her life and education with a slate clean of preconceived notions. Labels are not necessarily malicious but they are seldom harmless."

From page 4.

No matter how high or low functioning the child is, they are ALWAYS first a child.  Autism is only a part of them and never all of who they are.

Wednesday, March 16, 2011

It's like this..

by Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. "

Wednesday, February 9, 2011

Choosing chelation

After a full year of research, I finally settled on the Andy Cutler method of chelation.  I feel it is the safest way and it will work the best for our family.

Here is a wonderful website that explains it from top to bottom.

After much more research, I decided we would start with just ALA 5mg doses every 3 hours during the day and every 4 hours at night.

We have been chelating for several months now and I regret that I have not kept track of all the details.  I will have to give a general update for all of the past rounds.

Round #1- Within 1 day of starting our 1st round of chelation, we noticed a huge jump in Wyatt's language!  He had more words, he was putting longer sentences together, and the sentences made sense.  This is very noticeable in a 5 year old who is behind in speech.  We had not changed anything else.

Round#2-5 - Every round, within the first 24 hours of starting the round, we would see a new jump in language.  EVERY. SINGLE. ROUND.  These advances did not go away once the rounds were over.  It kept getting better and better!  Also noticed better eye contact, less trouble with reacting to food, skin clearing up, and better interaction with others!

Round#6-8 - We increased from 5 mg to 10 mg doses.  A little more hyper during rounds, but no other negatives.  Again huge jumps in language..in words and in how he uses those words.  Also continued to notice all the positives from #2-5!

We began round #9 today at 5pm.  Wyatt is a little hyper from getting cheese yesterday.  Big mistake on my part!  He is currently taking food enzymes, no phenol enzymes, cod liver oil, vit d, vit c, calcium, mag, zinc, milk thistle, biotin, gse, probiotics..sometimes we use melatonin to help him sleep, but he rarely needs it now.
I will continue to update as we move forward with this round.

Heavy Metal Toxicity and Autism

What are the symptoms of heavy metal toxicity?


"You may have heavy metal toxicity if you are experiencing any of these symptoms:
Chronic pain throughout the muscles and tendons or any soft tissues of the body
Chronic malaise – general feeling of discomfort, fatigue, and illness
Brain fog – state of forgetfulness and confusion
Chronic infections such as Candida Gastrointestinal complaints, such as diarrhea, constipation, bloating, gas, heartburn, and indigestion
Food allergies
Migraines and/or headaches
Visual disturbances
Mood swings, depression, and/or anxiety
Nervous system malfunctions – burning extremities, numbness, tingling, paralysis, and/or an electrifying feeling throughout the body
Note: Heavy metal toxicity can produce vague symptoms that sometimes are mistaken for other chronic conditions such as Autism, Chronic Fatigue Syndrome, depression, Multiple Sclerosis, and a host of other serious disorders. Discuss heavy metal toxicity with your healthcare professional before receiving any diagnosis or treatment for a serious chronic condition."
Interesting that every child with Autism that I know of has many of these same symptoms.  Wyatt has almost all of these symptoms.
A great chart with the symptoms side by side.
This is why we have decided to chelate these dangerous metals from Wyatt's body.