Looking for Autism: the saga continues

We are back in school this year as a first grader and I gave the teacher a couple of weeks to settle in before I went in to chat with her.  Since we aren’t homeschooling any more I really need this feedback from someone who deals with him all day long.  Not to mention she sees him with all his other peers where I would expect his deficits to stand out more.

So I asked her how she felt he was doing?  She just looked at me with a puzzled expression and said he is doing great.

ME:  “Ok, so what I mean is on a scale of 1-10 how do you think he is doing socially?”

TEACHER: “He is doing very well he plays with the other kids and enjoys recess and when he chooses to so an activity on his own like read a book he is fine if another student joins him and he returns to the group just like any other student would.”

(Obviously she is not understanding I want to know about his deficits, so I try again)

ME:  “That is great.  But if you had to assign a number to the kids.  and 1 is say this child doesn’t belong in a regular classroom and 10 is perfectly neuro-typical indistinguishable from his peers., and fits in the class exactly as he should  Where would my son fit?”

TEACHER:  “Well, I would say he is maybe a little more mature than the other children in the classroom.  We will know more after they finish the testing on Tuesday, but they might talk to about the possibility of moving him up a grade.”

(Now I am the one with the puzzled look on my face)

ME:  “Well, we did hold him back a year to give him the best chance at catching up socially.”

(but I am thick headed and I came here for a deficit darn it and I am determined to get one)

ME AGAIN:  “I know my son has a little bit of an odd word choice and some precocious language.  I am not really looking for something I need to change, but just something to watch to see how he is progressing.  Can you come up with any kind of behavior or thing that he does that kind of makes him stand out from the other kids a bit.  Something that perhaps could be watched and measured for progress?”

TEACHER:  “Well, I don’t know, I wouldn’t exactly call it a deficit.  In fact it is endearing, but when he gets very happy and excited he kind of jumps up in his chair and squeals with joy.  It is just a moment and it makes the rest of the class happy and laugh and it is contagious.  I really wouldn’t want to see it go away, but is that what you are looking for?”

We finished our conversation with some small talk and she said she would watch him a little closer and if she happened to notice anything she’d make a note of it for me.  I thanked her and assured her that she needn’t go out of her way, but I would be very appreciative of any feedback she had good or bad.

So the question remains.  Where oh where did this elusive Autism gene go?  I mean my son didn’t regress he was born Autistic.  For all intents and purposes he still should be.  Could he really have been cured of Autism.  I mean sure, we have always hoped.  We did biomed and chelated (still chelate) in the hopes that it would get rid of the Autism.  But did I ever really believe it?

No, I am still waiting for it to leap out and bite us in the butt.

I think I have a tiny glimpse into the world of PTSD.  I am still holding my breath and I am still watching and analyzing, and picking up on every possible deficit.  I do this silently to myself (I would not do it in front of my child) because I can’t really imagine that we may see a day without supplements and weekly rounds.

I been eating, drinking, sleeping , and dreaming Autism for so many years.  It is hard to imagine a life without it.  and I have been secretly afraid to actually think it would ever really be gone.

Maybe I can actually let myself hope?

 

Trying to find the Autism: Theory of Mind

We have had our son tested every few years to see how he is doing/progressing.

I did let the testers know that he had a diagnosis of Autism, but I did not give them the actual tests to look at as I wanted their unbiased assessment on how he was doing at the time of the test.

The past summer (2011) we had him tested by the school district.  They ran all the typical Autism tests, they tested his sensory issues, they even tested his cognitive abilities this time as he was able to read and could get more thorough testing than in previous years.  They then decided to test his speech as well.  We had a total of 5 appointments to complete the variety of tests.

About a week or so after the last test we had the results appointment.  They found that his mispronunciation of the letter “L” was not age appropriate and he qualified for 1 hour per week of speech to address this.

Huh?

Ok and………?   Nothing.  No autism.  No Pdd.  No Aspergers.  Not on the spectrum.  No part time in the Special needs classroom.  No aid or shadow.  Nothing.

There are a lot of parents who claim their child is recovered and I do not make that claim as I can still see a few things that make him look slightly different from his peers (some slight oddness in the way his arms move when he runs, some precocious language, and a sporadically his tone is, well, odd).  So recovered? No, but is there any Autism?

Well another parents mentioned the Sally and Ann test for theory of mind, so I did this with him, fully expecting him to fail.  He passed.  He passed both what is she thinking and what does he think she is thinking.  Wow!

I decided to go a bit further this past week and really see if I could find the Autism.

I searched online and found a variety of links for theory of mind sample tests and questions.  I read him all the questions I could find. In all he took 5 tests and he passed he missed all of 2 questions.  He got questions correct that were labeled as memory (of course this is to be expected as it has always been his strong suit), TOM1, TOM2, and TOM4.

Now these were just internet sample test given by his Mom, but I tend to be hard.  I did not give him any clues or repeat options when he got one wrong.  I was really looking for some measure to go by to watch these last skills come online.  See we started by using the ATEC (his first score was132), when he scored 0 on that we went to the child brain pdd test.  he started in the 70’s on that test.  When that went to 0 I had nothing else to use, this is what prompted me to look for these TOM questions.  Now I am just at a loss.

I can see the Autism in his slight oddness of posture and word/phrase selection, but I can’t seem to get a handle on anything else.

Could that really be all we have left to address………………………?  I suppose only time will tell.

http://www.staff.ncl.ac.uk/daniel.nettle/liddlenettle.pdf

http://www.iidc.indiana.edu/?pageId=424

http://www.psychologytoday.com/blog/aspergers-diary/200805/empathy-mindblindness-and-theory-mind

http://psych.wisc.edu/lang/pdf/Gernsbacher_autistic_modules.pdf

http://www.staff.ncl.ac.uk/daniel.nettle/liddlenettle.pdf

Open Sesame……. or rather beware of Sesame Sticks?

Dry sesame seeds

Well, I was just typing up a draft of a post I was going to call Finding the Autism or Searching for Autism or some such thing, all about our search for some measurable way to continue to watch him improve.

I may still post it at some point because it is about theory of mind tests and may contain some points of interest for some of you, but…….

 

Our search for the elusive autism came to a standstill today.

My powers of observation seem to be getting a little soft.  Sunday afternoon he was simply not himself.  Very over emotional, and whiny.  He was over reacting to almost everything.  I can’t call them meltdowns precisely as they wasn’t that severe, but I just kept thinking… What in the world was going on.  It has been many months since we’ve seen anything like this.

Adrenal?  No he got all his adrenals

Thyroid?  no he’s been getting that.  In fact I have considered retesting to see if he is ready for a decrease.

Yeast?  maybe…. it might be back… we are on round.  Hmmm,  but he isn’t hyper exactly…. hmmm

OMG its the sesame.

We picked up some lovely sesame sticks from the health foods store.  I thought these would be better than chips and personally I think they taste great.

My son thought they tasted great too, and he “enjoyed” quite a few of them.

Remember my Diet and Autism post about the low sulfur diet and how we don’t need it anymore?  Well…. we may not need to be low sulfur but perhaps a cup of sesame seeds was a little over kill.

Of course I didn’t come to this realization until almost bedtime.  I used to be a little faster on the draw.  Perhaps not having to be on the edge of my seat to figure out what supp I needed to toss at him has made me a little too comfortable.

Having finally put two and two together, I gave some OoO.  He was still a bit off yesterday (Monday), but he is back to his normal self today.  I imagine I will need to watch him for an increase in his “desire” for sulfur foods again now that he has been reminded how much he loves them, lol.  Or maybe he’ll just want sesame sticks.

Once upon a time his self-limiting was so bad that he only ate about 5 or so foods.  Those were dark

times.  But it just goes to show, while we are doing wonderfully over all, it isn’t time to relax completely just yet.

Whew… glad Sunday is only a memory.

Did Acetaminophen Provoke the Autism Epidemic?

tylenol bottle closeup

http://www.altmedrev.com/publications/14/4/364.pdf

I was invited to view a webinar on a possible connection between Autism and Acetaminophen some months ago.  When I was first told about the next great claim of a definitive cause for Autism, I was skeptical.  I had listened to so many debates on causation and autism.  Honestly, after awhile, the obvious politics involved becomes very tiresome.

I voiced my skepticism, but as this mother proceeded to describe some of the accusations against Acetaminophen (Tylenol), I started to listen more closely.  That is when it hit me.  Unlike all the other causation theories, this could actually explain my child’s Autism and his remarkable improvement through chelation.

You see, my son did not match the typical case histories of othAcetaminophen and Autismer Autistic children.  In fact, I almost failed to pursue biomedical treatments because he did not have a typical story.

My child did not regress.  He never developed normally.  After his diagnosis it became apparent that he was born with Autism.

My child did not have any health problems or frequent ear infections.  In fact the only ear infection and subsequent round of antibiotics he had ever had was at 2.2 years of age, well after his Autism was apparent.

My child was never vaccinated.  I did not receive any vaccines or Rhogam while pregnant.

This was my 5th child.  If his Autism was solely due to my toxic body burden one would expect my previous children to be more affected.

We did not move.  My 3rd child and 4th child were both born and raised in the exact same apartment building as my 5th child.  The environment hadn’t changed.

I really was at a loss and none of the typical biomed explanations quite fit our experience.  Still biomed advocates were proposing using natural safe approaches, like diet modification along with vitamins and other supplements.  These weren’t things that could damage my child, so I really had no reason not to at least give it a go.

We did the GFCF diet and saw improvement.  We did yeast treatments and gut supports, and saw improvement.  He improved on zinc.  He improved on B6.  He improved with almost every intervention we tried.

Then we found AC chelation and he improved to point that most would consider him recovered.  He is in a typical school with typical peers with no supports.  He has friends and has been invited to parties.  In fact, at the end of this year they tested him for the gifted program and determined that he was academically gifted and will start going to an enrichment school one day a week because his typical classroom isn’t quite academically challenging enough.  He is flourishing.  (He does still have some precocious speech and slightly odd gestures but no sign  of Autism.  He was diagnosed with low functioning Autism at age 2.5).

With that kind of drastic improvement with chelation protocol, it was apparent he was metal toxic.  But how?  By now the how didn’t matter much to me.  We left the how question alone to dangle in the wind as we had found the solution, so it didn’t seem important to figure out exactly how the problem started or what the cause could have been.

Never the less the question always dangled, it never totally disappeared from our minds.

Insert the Acetaminophen theory.

You know what was different about my 5th child’s med history?  I was over due and very uncomfortable during my last trimester.  It was so bad that I could not even get two full hours of sleep per night.  I was miserable and exhausted.  My midwife was concerned about whether I would have the energy to mount a proper labor and delivery.  I asked her if there was anything safe I could take while pregnant to help me sleep.  ( I just knew her answer would be no).  She said yes and came back with an Rx for Tylenol 3 with codeine.

I told her I thought it was over kill, “I am uncomfortable but I am not in pain.  I just need some sleep.”

She said that it didn’t cross the placental wall and that although I didn’t need the pain relief, it was the only thing they could give me that was safe for my baby.

I took Tylenol 3 almost every night for 2 weeks.

Quote from article:

Acetaminophen taken during pregnancy may provoke autism present at birth…

Finally, a possible explanation for what we had experienced.  The Tylenol I took may have interfered with his ability to detox environmental toxins as well as impaired his brain function and immune system.  The toxins his body built up could be responsible for the rest.  Is this truth or theory?

At this point it is only theory.  But it is the first theory that had a chance of explaining what we saw, and the research is convincing.  It is solid enough that I would never give Tylenol to another child.  I would recommend all children and pregnant mothers avoid Tylenol and other acetaminophen containing products.  Until more research is done it only makes sense to be cautious.

“Where is our son?”… “He’s over there.”…”Where?”… “Over there waiting his turn.”

Root Beer

We went home for the Katy railroad Memorial Day celebration this weekend.  The kids have the greatest time.  There are lots of rides, carnival food, a petting zoo, and tons of railroad themed events.  Best of all there is homemade root beer.  The girls look forward to the root beer all year long and I listen to all the plans for how many refills they are going to get for at least three days prior to the big event.

While this is great fun for the whole family, for me it generally either meant keeping my ASD son home or chasing him all over the park only to escort a screaming meltdown back to the car an hour later.

The kids are older this year and our boy is doing so well my husband felt ambitious and decided to take them all while I would meet them there a little later.

I was a bit apprehensive but figured hey what the heck, go for it.

When my mom and I got there we walked around searching for the family.  We saw crowds of people, brightly colored tents, noise and activity bustled all around us.  Children were lined up waiting for face paintings, clowns making balloon animals, and bounce house activities of all kinds.

Finally we spotted my husband among the other happy parents celebrating the holiday.  Standing there… alone?  Ok, he let the other kids go off to peruse the goodies of their choice, but what about our ASD kiddo?

Me:  “Hun, where’s our son?”  (with a puzzled look on my face)

DH:  “He’s over there.”

ME:   “Where?”  (I say frantically scanning the area)

DH:  “Over there waiting his turn.”

That is when my eyes landed on a little mop headed boy waiting in line with all the other children for his turn on the……. on the….. heck I don’t remember what he was waiting in line for.  It really didn’t matter.  He was patiently waiting, standing, hot, sweaty, red-faced from all the previous activities he had already enjoyed and ginning from ear to ear.

This year we all had fun! 

(Especially this mother’s heart. Thank you AC

chelation.)

Adrenal Fatigue: Something was very wrong.

When we started AC chelation our dose was a bit too high.  Remnants of our old DAN!s protocol still lingered in my mind. I mean 1/2 mg per pound for three days is pretty close to 10 mg per pound every third day.  So we started at just under 25 mg per dose of ALA and DMSA together.

The changes we were seeing were amazing.  In only three rounds he had increased conversational language, he was more social, more tuned in.  He was listening.

This child who wouldn’t respond until you had called his name 15 times…. this child who was content just to stimm all day on the computer (unless he was running off or tantrumming of course)…. this child who scripted all day and all night without meaning to his words… this child was in the living room minding his own business and his mother and father were talking among themselves at the kitchen table.

We were having a normal conversation in average tones, and we were talking about him.  I do not recall which of us used his name, but he heard it and from the other room he yelled, “Coming!”  Only to appear in the doorway a moment later and say, “you called me?”

It was incredible.  We were doing something soooo right.  Amazing.

On the other hand, something we were doing was sooo wrong….

He was whiny, clingy (this from a child who never wanted to be held), sad…..  He cried so easily, and the mood swings were drastic.  On minute he was fine and the next was a complete meltdown over some tiny thing like dropping his toy.

We also had a return of a very old behavior.  When he was younger he used to crawl along the floor with his head on the carpet sliding it along the ground.  It was a very odd behavior that we were happy to see go away and very unhappy to see return.  He was also turning upside down a lot.  He did hand stands on the wall, on the couch, in the chair.  This wasn’t completely abnormal for him as it was part of his trouble with vestibular sensory processing issues, but it had increased substantially.

I was on a mission to figure out how to keep our wonderful gains, but get rid of these awful side effects.

It was suggested that some of the behaviors we were seeing were headaches do to dosing to high.  We lowered the dose down to 1/4 mg per pound and the crawling along on his head and increased headstands stopped.  Yeah!  one piece solved.

A parent in one of the groups I was part of mentioned Adrenal fatigue, so it was back to the books.

That is when we discovered ACE.

Adrenal cortex was our happy pill.

I began by giving ACE in the morning, starting slowly and increasing by 1/2 cap at a time.  We decided to follow Andy’s timing recommendations for Hydrocortisone.  (between 7-8 in the am, around noon, and between 5-6 in the pm).  This worked like a dream.

All his increased whiny, fearful meltdown behavior stopped (we still had meltdowns, but they were back to the regular kind we had grown accustomed to).

The something very wrong was solved.  Of course he had adrenal fatigue even before we were chelating we just didn’t know it.  So we got bonus result from this wonderful little supplement.

My son never slept.  We struggled with it for years.  It didn’t matter what time I laid him down, he was up until at least midnight, sometimes 1 am.  Then he would wake up again at 3am or 4am.  He would be wide awake, ready for the day, full of vim and vinegar.  uggg.

Of course he was down for a nap around 8am but by then it was too late for me.  I was chronically sleep deprived.  All we ever heard about was melatonin.  I would dose it before bed, and then often again in the night.  It would work for a week or two, then it would start to make sleep worse and we would stop using it.  A couple of weeks later we could bring it back again.  It was a never-ending cycle we had gone through for years.

But when we started the ACE the most marvelous thing happened.  He slept through the night.  It was still a struggle to get him to fall asleep, but there were no more night wakings.  This was one of the biggest gifts I could get.  Better than winning the lottery any day.

I have to fix this, me and only me

Like I said in another post,  I found his autism by searching the web for a friend.  So now what?

Well the search was on, the hours and days of reading and research.  It was consuming me.  I had to find the answer.  Of course my dh was in complete denial.  Like most fathers he didn’t want to hear it.  (He is completely on board now, but this was in the beginning).

I couldn’t eat, barely slept.  I was running on adrenaline.  I was making appointments trying to get him into ABA therapy (getting on waiting lists),  searching biomed sites, joining yahoo groups.

It is so hard to understand biomed from disconnected posts on yahoo.  I went to the library, checked out books etc…

I didn’t even give myself time to let it sink in.  As usual I went straight from: we have a problem…. to… find the solution.  There was no time to mourn for the lost future.  There was no time to breathe.

And I was alone.  There was no doctor to help.  I had no friends who had been there before.  No family members to tell me to slow down (I do not live in the same state as my family they are many miles from us).  Just the weight of my child’s future on my shoulders.  All I felt was urgency, I wouldn’t even let the fear in.  My baby had fallen off the edge of a cliff and I had to find a way to catch him before he hit the ground.  I was a robot running on coffee and determination.  And the stress was about to devour me.

(to be continued)

 

Related to:

https://throughthepuzzle.com/2012/04/20/hello-world/

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.

Introduction

I have had many friends suggest I should blog and yet I have shied away from it.  I suppose I just never really thought I would have something to say that would be that interesting.  Then I met Autism. As I traveled the road of so many mothers before me, some truely amazing things happened.  Some might call them miracles, but I know they were not born out of anything short of prayer and hard work.  Now I think ‘perhaps I do have something worth sharing with the world’.

My child was diagnosed with low to moderate functioning Autism when he was 2 years old.  It is a frightening thing to consider what the future looks like for most autistic kids.  The vast majority of those diagnosed with ASD (Autism Spectrum Disorder) are never capable of living independantly.  Provided they do not get so violently out of control that you can’t keep them home with you, that is precisely where they will always remain as they lack the skills necessary to cope in a dynamic environment. The thought that I may need to commit my child to an institution was something I simply couldn’t bear.  I am sure you all can relate. Putting your own child into a mental institute, I would imagine, would feel like removing your heart.

That is when I delved headfirst into the world wide web.   I read, researched and sadly, made many mistakes along the way.  Mistakes that cost dearly in both time and money.  Then I happened onto something that would change all of our lives forever.   I found out how I, a mother of 5 at the time, could help my child, without mortgaging everything we owned to the DAN!

What is ABA?…..Oh, it’s for Autism…..OMG that’s my son!

I am still getting the hang of this blogging thing.  I am quite a perfectionist in some ways.  It makes writing a challenge as I am never satisfied that I used the proper words, grammar, spelling (I am a horrible speller), punctuation, etc….

I go back and rewrite incessantly, can you say OCD?  Maybe just a bit.  But I am going to forewarn you.  I intend to resits the urge toward perfection (I am not likely to achieve it anyway) in favor of getting our story out.  It isn’t going to be pretty, but neither was the journey.

From the time my 5th child was born he was a bit different.  He wasn’t a cuddly baby, and he had a very volatile temper.  We just chalked it up to his being “all boy”.  We joked about the North African temper (his father is Algerian).  We had already determined not to tell our daughter’s future marriage prospects that their lineage is Algerian and Irish.  We figure that would deter even the most layed back and patient of men, lol.  When this boy came to us we laughed that the hot headed stubbornness manifested 10 fold in boys.  We were to learn that, all joking aside, there really was a genetic component to his behavior.

My husband had friends back home who had gone to France and had their child assessed.  They were told that he needed ABA therapy and that the US was the best place to get it.  They called and I was given the task of finding this thing, what did they call it, ABA?  No idea.

So off to google I went, in search of what, I did not know.  I read about ABA.  Everything I read kept mentioning Autism.  Ok, ABA is an Autism treatment.  Can I find it in our area so we can help bring our friends?  Yes there is a school 40 hours a week of therapy, they admit children with Autism……. and there is a link….. what exactly is Autism (sure I had watched Rainman like everyone else, but….)?

I began to read the list of symptoms:

  • Does not respond to his/her name
  • Cannot explain what he/she wants
  • Language skills or speech are delayed
  • Does not follow directions
  • Seems to be deaf at times
  • Does not point or wave bye-bye
  • Used to say a few words or babble, but now he/she does not
  • Throws intense or violent tantrums
  • Has odd movement patterns
  • Is hyperactive, uncooperative, or oppositional
  • Does not smile when smiled at
  • Has poor eye contact
  • Has difficulty with transitions
  • Seems to prefer to play alone
  • Gets things for him/herself only
  • Is very independent for his/her age
  • Does things “early” compared to other children
  • Seems to be in his/her “own world”
  • Seems to tune people out
  • Is not interested in other children
  • Walks on his/her toes
  • Shows unusual attachments to toys, objects, or schedules
  • Child spends a lot of time lining things up or putting things in a certain order.

Ok so when you read a list of symptoms you can get concerned if you child has several of the things on the list right?  So what do you think it means when there are 23 symptoms staring at you and your child displays 22 of them?

My child had never lost speech.  At 2 years old he didn’t have a word of Mom, or milk (his favorite).  He sang songs he heard on TV, and would repeat you if you labeled something.  He could say milk when prompted, but never asked for it short of screaming in the kitchen until you figured out what he wanted.  This was it.  My child was Autistic, no question in my mind.  What is ABA?..