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.

Tuesday, September 14, 2010

Natural Bug Repellant

From a mom in one of my ASD groups.

1 part essential oil with 10-20 parts carrier oil or alcohol.

For a smaller batch, start with:
10-25 drops (total) essential oils
2 TBS carrier oil or alcohol

The essential oils that work well against mosquitoes are:
cinnamon oil
lemon eucalyptus

Safe carrier oils and alcohols include:
olive oil
any other cooking oil
witch hazel

Mix it together. Use a solid colored spray bottle. You can rub or spray it onto skin or clothing. *Some oils can stain clothing.
This has to be reapplied after about an hour or after swimming or exercise.
Store in a dark bottle away from sunlight or heat.

Wyatt's Symptoms

•Not respond to their name by 12 months of age He has responded to his name since he was a baby. I can remember clearly when he was 8 months, but I know he responded before then.

•Not point at objects to show interest (point at an airplane flying over) by 14 months He started pointing when he was a baby too. I *know* he was pointing before his 1st birthday.
•Not play "pretend" games (pretend to "feed" a doll) by 18 months He has always been able to play pretend play. He uses objects correctly and uses them to pretend they are something else.
•Avoid eye contact and want to be alone He does have difficulty with eye contact although it can come and go. There are times he seems more stressed and will have less eye contact. He doesn't like to be alone all of the time,but prefers it when stressed and trying to carry out a pattern. He was a very independent baby and didn't need to be held a lot, but he did like to be held.
•Have trouble understanding other people's feelings or talking about their own feelings He has always been sensitive to people's feelings. When he was about 4, he started expressing how he was feeling with words, but before that he always showed different emotions. He has always tantrumed a lot and over the smallest things.
•Have delayed speech and language skills He has never had trouble with speech. In fact, he started talking earlier then both my other kids. Once he started talking, sentences came very quickly and there was never a regression period. The only thing I have noticed it now he has trouble with which in between words to use. IE: with is a word he doesn't know how to place. Otherwise his language skills are very good and he talks a lot and well. He does speak gibberish a lot now.
•Repeat words or phrases over and over (echolalia) He has never done this.
•Give unrelated answers to questions Sometimes.
•Get upset by minor changes Some days yes and some days no.
•Have obsessive interests This is the one he does have. He is obsessed with anything with wheels, although that bends a little because he recently went crazy over planes. These are what he plays with the most. He drives them around and crashes them and makes them talk to him, to us, and to each other. The one thing he has always done is have patterns. He has always separated toys to like kinds and he will line them up. He lines up anything that is alike and scattered. Food he eats, crayons, toys, shoes..although not always. He can allow things to be scattered and will often line them up so he can scatter them. He will also put a pile of something on one side of him and then slide or *drive* them to the other side and make a new pile until he has done that with all the objects. He will usually get pretty upset if you interrupt these patterns, but is usually pretty easy to redirect.
•Flap their hands, rock their body, or spin in circles He rocks himself to go to sleep. He used to seek out places to bang his head, but he doesn’t anymore most of the time. Now it’s just rolling back and forth on his bed and even that is not every night anymore. His body is always moving and sometimes he swings his arms and such over and over.
•Have unusual reactions to the way things sound, smell, taste, look, or feel He doesn’t like loud noises and he has a slight aversion to slimy/smooshy objects, but he can handle the noises if he is warned and he gets used to the feel of the objects quickly and will play with them. We have never had trouble with him not wanting to eat certain food, because of texture.
•Does not share interests with others He absolutely shares his interests and always has. Has always wanted to show us what he did because he is proud and engages people for conversation and play well.
•Only interacts to achieve a desired goal Not anymore then I typical kid, in my opinion. His main goal is to get people to play with him or talk to him.
•Has flat or inappropriate facial expressions Yes and overly dramatic faces..never flat faces though.
•Does not understand personal space boundaries This is a problem.
•Avoids or resists physical contact This comes and goes. Usually depends on how his day has gone and if he is stressed. Usually the likes affection.
•Is not comforted by others during distress He is comforted. Hugs and kisses usually make everything better.
•Reverses pronouns (e.g., says “me” instead of “I”) Not anymore
•Does not point or respond to pointing He has a hard time knowing where to look when someone else points at something, but he points exactly at what he is trying to show.
•Uses few or no gestures (e.g., does not wave goodbye) Started using gestures as a baby and still does all the time.
•Talks in a flat, robot-like, or sing-song voice Nope..never has.
•Does not understand jokes, sarcasm, or teasing The opposite, he is always making jokes and he laughs at jokes on tv and sometimes when someone else tells one.
•Lines up toys or other objects Yes
•Plays with toys the same way every time A lot of the time, but not always.
•Likes parts of objects (e.g., wheels) He is sometimes very fascinated with wheels and sometimes prefers the wheels over playing with the toy.
•Is very organized NO although he does shows signs of it sometimes, but not obsessively.
•Hyperactivity (very active) YES! He has always been very active. Never stops! He just started being able to sit still and watch a movie in the last year and even that is almost too long for him.
•Impulsivity (acting without thinking) Yes
•Short attention span Depends on what it is. He needs to be actively engaged in something he is interested in or his attention span is minutes. If he is interested, he could do that one thing for hours.
•Aggression Not more then a typical kid.
•Causing self injury Only when he was banging his head to sleep. He caused cuts on his ears and they would bleed. He does sometimes hit himself in the head when frustrated, but I have heard that can be normal. He doesn’t do it hard and it seems to be more for attention than hurting himself.
•Temper tantrums Yes
•Unusual eating and sleeping habits Just that he doesn’t sleep well, wakes often to sing, play, talk gibberish, laugh and the rocking. Gets very loud and wakes us.
•Unusual mood or emotional reactions Very dramatic
•Lack of fear or more fear than expected Depends. He doesn’t fear somethings that he probably should, but he does have a sense of danger. He will try to climb things at the park and get scared and want down.
Biggest issues as I see them are OCD, ADHD, and sensory.

Monday, September 6, 2010

My child was injured by a vaccine.

I know it in my heart and no one can tell me differently.

When Wyatt was a baby (maybe 2 months old), he began having tremors (possibly seizures since his whole body shook and stiffened).  Of course we took him to the ER and they told us that he was FINE and that this was NORMAL and he would grow out of it.  He had them until he was about 7 months.  I remember thinking how can this be happening and not hurting him in any way?

Years later and the old saying about hind sight..  DUH He had gotten the Hep-B vaccine maybe a day before this started!  Asshole doctors weren't going to even suggest that could happen.

Coincidence that our only child who has been vaccinated had this happen and now has Autism?  I think not.  I have to remind myself that feeling guilty over not knowing better is useless.  It won't change anything and how was I to know when no one talked about it back then?

I will never inject any of my children with that crap again.  Don't get me wrong. I don't think everyone should stop getting vaccinated.  Thinking that every human should be given all the same vaccines and same doses is just plain stupidity.  Why are we not making an uproar about this?  Would you like someone to try and put every one of us in one big group about another issue?  How about food?  Say the government decides we should all eat the exact same food, the exact same amount of food, and all at the exact same time.  Would that be ok with you?

This infuriates me, as it should everyone.

"A second area of concern is the VAERS reports involving hepatitis B vaccine administered with other vaccines (vaccine cocktails). Health officials are fond of dismissing those reports as being attributable to hepatitis B vaccine, because of the multiple other antigens present (almost as if they wanted to cloak hepatitis B vaccine reactions from scrutiny). Let’s avoid that controversy and focus on the extremely disturbing VAERS data of hepatitis B vaccine with other vaccines. These reports amount to only one third of total reports (7,275), but account for two thirds of total deaths (291). The median onset of those deaths was 2 days after vaccination -- displaying a clear temporal association. The median age of death was 0.5 years in this group. 50% of all hepatitis-B-vaccine-cocktail reports were serious (died, emergency room, hospitalized, disabled). I grouped convulsive reactions together from the hep-B-vaccine-cocktail data and found a deeply disturbing pattern. These were anything labeled convulsions, seizures or tremors in the VAERS hep-B-cocktail data. Of the 1189 such reports, fully 80% (950) were serious (died, ER, hospitalized, disabled) median age 0.5 years, median onset after vaccination 0 days (less than one day). Someone should do follow-up and find out what happened to those poor infants who suffered severe convulsions after a hepatitis B-multi-vaccine cocktail. In the personal reports I’ve taken of similar adverse reactions, the children were left brain damaged and developmentally disabled."

From: http://www.compleatmother.com/belkin_2.htm

This is what happened to my child and I take it personally when someone says, "It's for the greater good."