Gains over the years

I didn’t keep a journal or diary of our journey through the autism puzzle, but I was part of several parent groups.  They were really my lifeline during a time when it feels like your world is coming down in front of your eyes and nobody understands what you are going through.  I still cherish these groups and the relationships I developed with other parents.  The most authentic way I could come up with of relating to you the gains we saw with AC protocol was to go back to those groups and grab some of the posts I wrote.

Here is a small compilation of some of the wonderful new skills I observed in my child as we batted out round after round of chelation (see Safe Chelation for more information on the protocol)

July 2009:

I use the ATEC once in awhile to measure where we are at.  I just had to share.  The first ATEC I filled out for my son was after we had started the GFCF diet (which made a huge impact) but before we had done much else.  (We had only known he was autistic for a month or so at this point).  9/13/07  total score 82

This next score is just before chelating with AC protocol but after an initial attempt to get yeast back under control.  3/22/09  total score 37

This is todays score since starting AC chelation.  7/22/09  total score 15

Granted these are just numbers but they are representative of the impact this has made on our entire family’s quality of life.  This score can’t be consistent without being constantly vigilant with the yeast.  We are sure hoping for that point when we get enough metals out that his body can control the yeast.  Wow we are not really that far from managed recovery, in just 4 months.  This just makes us so hopeful for where we could be after years of Chelation.  I know we are all aiming for recovery for our children and that is why we go through all this, and I know I can see the difference in my child, but the numbers just hit home for me.  I had to share!

(My son (4) has been playing with his baby brother (9 months) all morning.  They are laughing, sharing, and enjoying each other, and I am not afraid the baby will get hurt!!)

(Note: We did an ATEC by memory of what he was like at 2.5 years just before his official diagnosis and before we had done at biomed and his starting score was 132.)

June 2010:
Mine ds was four when we started AC chelation (after previous bad protocol).
We did get a few small return of old symptoms. It is difficult for me to
remember everything (I know I should have been keeping a journal and I could
kick myself but for some reason even that knowledge doesn’t motivate me to
do it).

I do remember his dragging his head across the floor while crawling as
something he used to do often that had went away only to reappear briefly
when we began to chelate. Wiping his mouth repeatedly also seems to be
something that comes and goes. Hard to pinpoint and for the most part we
see only gains.

We recently redid our ATEC and Childbrain tests. He scored 5 on the ATEC
(down from 132 at the beginning of our journey 2.5 years old) and a 12, No
PDD on the childbrain (down from 197).

February 2010:
Mine just turned 5 this week and he has started lying. I know this
shouldn’t be a good thing, but its so age appropriate. He has never lied
before this week. It didn’t matter what he did wrong he always told the
truth when questioned.

I was in the other room and he was in kitchen. I hollered out to him, “What are you
doing?” He said, “Eating a sandwich.” Knowing we had no bread I walked in to
find him eating sugar and he laughed and ran out of the room when I caught
him. He has done similar things all week. He made a mess in the living
room and when I asked who did it he blamed his older brother.

Also the other day his big brother wasn’t feeling well and Umar noticed he
was sick and told him he would make him better. Umar then proceeded to put
his big brother in bed and told him a story about giving him swallows and
how it made him all better and then they road on thomas the tank engine and
had fun the rest of the day, LOL. (ok we still have a bit of obsessive
interest going on but we’ll focus on the improvements.)

March 2010:
Our big WOW rounds seem to be over and the past few rounds have just been he
seems better but I can’t put my finger on any one thing. My dh travels and
he is asking me how our ASD guy is doing after last round and I’m saying the
same thing he’s well, seems better, yada yada yada……..

Yesturday, he was in the kitchen chewing on something (never know what that
kid will put in his mouth next), I asked him what are you chewing on? He
recently started answering “W” questions. you know what this little brat
says to me?

“What do you think I’m chewing on?” he says. My jaw dropped. He just started giggling.

April 2010:
As for the changes we’ve seen that I would directly call processing:
My son would incessantly say, “Hi, my name is (name removed) whats your name?”  then he would say oh, hi…….(fill in name)” then stare at you for a minute obviously wanting to say more but unable to communicate any further. then he would just turn and leave the room.

He can now communicate anything he wants to say (he is slow and takes his time tofind the words but he is finding them). He has made up (relativity) original stories, told me about his dreams, made up his own knock knock jokes as well as why did the chicken cross the road jokes (we recently got a chicken), he uses “w” questions, picks on and purposely annoys his older sister. He can even explain to me why he is upset in the midst of crying.

All of these things are directly related to processing and all of this improvement hascome from 21 rounds of AC chelation as we have done no therapies or really anythingmuch new bio-medically. These particular changes are not lost even when yeast flares (this affects his behavior greatly), so they must be due to chelation.

October 2011:
I can tell you that my child wasn’t non-verbal but he had no functional
language when we started this journey. He went from low-moderate
functioning autistic to where we are today. I struggle to describe where
that is. He doesn’t show up on any test for Autism. We had them all (ados,
cars, gars, etc….) ran this summer and they got nothing on any test, no
sensory stuff either. They did tests they couldn’t do before because he was
delayed to get a read and still no delays showed up.

I can apply ATEC numbers he started with an ATEC score of 132 and today he
scores 0.

He still has some communication oddities in his choice of word usage. He
has a large vocabulary for his age and a bit too expressive I’d say. Not am
autistic lilt or singsong tone anymore (he used to), but still some odd
intonations. He has some mild annunciation issues and did qualify
for speech therapy for the letter “L”.

In social settings people are surprised when I tell them I have an autistic
child and they usually guess it must me my 2 year old (non-autistic child,
but he does have yeast and bacteria so he tantrums sometimes). They are
always shocked when they hear it is my 6 year old.

In any other biomed group they would consider him recovered. But I still
see delays and he still needs supplements to maintain and antifungals, and
adrenal cortex. We have only done 80 rounds and we still have a long way to
go, but as for the possibilities, oh ya they are huge. HUGE!!

I am not one to spend a lot of time looking at what we have gained. I tend
to stay focused on what is still left to do, but writing this brings tears
to my eyes when I remember where we were just a couple of years ago. there
is no activity I can’t take my family to and that is amazing.

his principal called me last week and wants to get him tested for the gifted
program because she thinks he has an extremely high IQ. And they want him
to read a book on stage to the entire school for an assembly they are having
this month. He will represent his grade. He is very excited to be able to
read on stage. I am amazed and in awe of what chelation did for my family.

We did not do any other therapies. We put all our eggs in one basket closed
our eyes and plunged headfirst into this and have never once regretted the
decision.

How Our Language Developed

My son began with all scripts and labeling with no functional language.  I mean not even a word for Mom or Milk or toy, nothing.  He would just scream and yell until you figured it out by presenting him with items until you got it right.  Or he would get it himself or he would drag you to where the item was and try to use your body as a tool to get what he wanted (like you might use a stool or can opener).

Then we started chelation and he did start to play with his scripts to change them or alter them to make them funny.

Then he would use the same scripts only appropriately and for comunication.  Around this same time he also began to repeat the same attempt at conversation.  He would walk into a room and introduce himself and ask what is your name.  Then we would answer him but we would change up our responses a bit each time.  I swear he would do this 50 times a day.  He would stop strangers in stores with the same start, but then he would look at you like he was going to say something else but would just turn and leave instead.

From there his ability to have a two way conversation would increase with every round until he was even using w? and started to make small fibs which he found funny.  At this time the conversation would begin with a normal flow but he would get stuck somewhere along the way.  you could see him trying to come up with the word he wanted but he couldn’t and then he would just revert to his scripts.

As we continued to chelate, the length of conversation before he would get stuck would grow.  Then he started to become able to substitute one word for another or a group of words which would convey the same meaning as his lost word.  At this point the scripts pretty well faded away.

Now we have no more scripting.  We also had an autistic sing songy tone for the longest which went away.