AutismBoy.Net

Dylan Plays Soccer

2010-08-05T13:13:00.000-07:00

Phenol Overload

2010-07-11T12:32:00.000-07:00

I get lots of questions about special diets (even though I'm not an expert). So I thought I would share some of what I have learned online.

Alex has been on his special diet officially for three years. But for Alex it started well before that. He would refuse foods and avoid foods that he had decided did not make him feel well. This started before he was a year old. I recall hearing when I was a child that disliking a food is an indicator of an allergy. Adults were talking about it around me. However, very little credence was given to it at the time.

Alex dislikes and avoids many foods. He never showed an interest in eating or exploring food. Food and discomfort are one and the same for him.

Phenol is one category of food that causes many people trouble. Although it is talked a lot about in the autism and ADD comunities. The intolerence affects many people in the general population as well.

So what is phenol overload?
Phenols are chemicals found naturally in many of our foods. The chemical is associated with giving foods the appealing color. They are a natually occuring chemical that for some can be hard to process once in the body.

What is occuring is that their bodies have difficulty processing the phenols into useful and/or non-harmful substances, known as PST deficiency. The therapy has been to reduce phenol intake so the body has less to process and prevent build-up of unprocessed phenol in the body.

Large levels of phenol build-up in the body can lead to behavior problems. Some symptoms can include;

child waking in the night
dark circles under the eyes
laughing at inappropriate times
self-stimulatory behavior
ed face/ears
diarrhea
hyperactivity
aggression
headache
head banging or other self-injury
inappropriate laughter
difficulty falling asleep at night

The typical adult symptom of phenol intolerance is chronic fatigue syndrome, which is the opposite symptom that most children have, altho some children do present as always tired/lethargic, instead of hyper with sleep and other issues.

High Phenol Foods
Banannas, apples, red grapes, artificial coloring, tomatoes, peanuts, oranges, cocoa, red grapes, colored fruits, and milk.

Most of these foods show-up on Alex's allergy panel. So he does not eat them. In addition, we have him take a bath with epsom salt 2 to 3 times a week.

For more information research the Feingold Diet.

Autism Events in Oregon

2010-07-09T10:17:00.000-07:00

Finding local autism conferences and events seems to be difficult at best. So when I stumbled upon these today I thought I should share them. I found these on the ASO website.

SAVE THE DATE: October 1st conference entitled “Believe in Possibilities, Navigating Life as an Adult with Autism Spectrum Disorder.” ASO's fall Conference will be for adults with Autism Spectrum Disorder, their parents/caregivers and professionals working with the adult population. View agenda. The conference will be on Friday, October 1st at the Oregon Convention Center, Portland, OR. There will be several break out sessions on various topics and an exhibition hall of agencies and non-profits who supports adults with ASD. Download flyer. Register online.

Oregon Association for Behavior Analysism 1st Annual Conference. October 2nd, 2010, 8:00 a.m. to 6:30 p.m. Shilo Inn Airport, 11707 NE Airport Way, Portland, OR 97220. See brochure for details.

Were going on a trip....

2010-07-04T12:35:00.000-07:00

Like a bubble that has been trapped beneath the cool water Alex words race from his mouth in a smooth rolling melody. "Were going on a trip, were going on a trip, were going on a trip..."

Alex eyes dance playfully with joy as he searches across the bathroom door into the room for my eyes and my smile. I repeat back to him, "Were going on a trip, were going on a trip, were going on a trip to the?", a brief silence can be heard. The sound of water slapping against the side of the bathtub. Then...

"STORE" Alex says. It comes like a bright bell sounding in the early morning of a quite town.

The game continues as I prompt "to get?"

An even longer quite ensues, then quietly like a he's not quite sure of than answer he whispers "StraaaawbeeerriiEEes", with a sly smile he looks up at my eyes and sings, "Were going on a trip, were going on a trip, were going on a trip..."

This is our new nightly game. It will go on for 30 to 45 minutes.

This is a new skill - Conversational turns (or loops)

Alex is trying to master the next level of conversation and being the perfectionist that he is....Were going on a trip! Every Night! :-)

Just Incase You Forgot Mommy....

2010-06-28T19:45:00.000-07:00

With an escape artist, slash runner, in the family; we are always on our toes. However, this weekend Alex seemed to be doing good.

Friday - he went to the library and then to the park. While at the park he did very nicely staying in the barked area.
Saturday - we went to a fenced park but also road bikes in the unfenced parking lot. Alex stayed near and responded nicely to reminders to stay near.
Saturday - we went to the McDonald's in town. Alex can not eat the food. But he loves to play with the kids on the indoor gym. He did very well.
Saturday - we also went to the store. Alex stayed with me. He pushed the cart. Never did he give any indication that he want to run at all.
Sunday - Matt & Alex put bark in the backyard flowerbeds. Alex helped his daddy get the bark and spread it out. He never tried to wander away while the gate was opened (daddy was right with him). He stayed close, listened, engaged and followed directions.

BUT JUST IN CASE WE FORGOT.... "ALEX IS A RUNNER".....
he decided to remind us (or me). Feeling over confident in Alex's abilities, I took the boys to the water park with Nana (and his cousins). For the first 30 to 40 minutes Alex did well. I was on high alert but he was doing well.

Then he started testing his boundaries.

The first time he did not go far. Just decided to investigate a nearby party. I redirected him and watched him more closely.
The Second time he decided to go for a little run but when I called he stopped and came back. I again redirected him and told him if he did not stay with us we would have to leave.
The Third time he ran and did not stop until he hit the end of the path and I had caught up with him.

I hoisted Alex over my shoulder as he threw himself to the ground and proceeded back to Nana and our things. I was officially corrected in confidence about Alex's running (wandering, elopement) getting better.

Alex screamed and cried the whole the way to the car. Onlookers clearly thinking I am a horrible parent that can not control my child.

Humiliated, tail between my legs I went home defeated by a six year old.

AAA AH, the joys of parenthood :-)

Vitamin A Therapy

2010-06-28T19:27:00.000-07:00

Persistent gut problems in Alex and an out of balance immune response to allergens led us to recently try Vitamin A Therapy, at the suggestion and supervision, of Alex's doctor. Because Vitamin A is a fat-soluble vitamin we were very cautious to follow the protocol extremely carefully.

I saw no strange new behaviour during or directly after the therapy. His attention does seem slightly better but I am not 100% sure.

We will have testing again soon to see if his immune system markers have improved. This will tell us a lot.

***Note: Vitamin A Therapy has been found to be beneficial for only a very small subset of children in the autism community. Alex fit the mould almost identically. This is not a therapy I would recommend someone try without consulting a doctor which is why I did not go into details about the protocol

For more infomation check out the following link: http://www.drrachelwest.com/Treatments/Vitamin-A-Therapy.aspx

Alex Negotiates!

2010-05-13T13:21:00.000-07:00

The eveninng sun glows through the bay windows. The sun catches the edge of a curl on Alex's toussled dusty blonde hair and he seems to glow with joy.

Carefully, taking a piece of paper and writing "NO" on one side and "YES" on the other. Each word is underlined boldly. With a sly, very happy smile he say's "Does Alex want computer? Y-E-S YYYees!", he waits for my reply "N-O, No!" Then very carefully and deliberatly he turns back over the piece of paper. His smile bigger than ever he points to each letter "Y-E-S, YYYees!" This exchange of Yes and No goes on for more than 15 minutes. He is happy. I am overjoyed. Alex has learned to negotiate.

The art of negotiation with a limited vocabulary. Alex has known the word No since he was two. However, learning Yes has been a focus for almost two years. It was only with the introduction of reading, writing and spelling that Alex has been able to finally grasp the concept of the difference between yes and no. Now he finds it fun to negotiate. Yes being his new favorite word. He answers Yes to almost any question he is asked. If he really wants a YES as answer he will help assist your head in a YES motion with the word.

Other new negotiation words have been on/off, red/green, stop/go. And colors. Wow! I never knew colors could have so many meanings. Each room in our house is identified by a color. We have a brown room, a blue room, and a red room. He communicates wanting a remote (which is not allowed) by saying "Want blue 2? Yes!" the calm answer of course in "No".

Alex may have a limited ability to communicate with words. But he is demonstrating that he is willing to find his own path toward negotiating his environment and life with those whom impact it.

Thank you!

2010-03-12T12:34:00.000-08:00

Hello,

I want to thank everyone who has reached out and been willing to help Alex obtain a service dog by either writing a letter, or letting us tape his interactions with a dog.

After Alex's last escape from the house we are changing the locks on the doors to self locking doors that require a pass key to get in our out of the door. The doors will also be self closing.

Becasue Alex will not keep and identity bracelet on with have order many keychain style dog tags that will be attached to his pants and shoes.

However, long-term safety when playing in the backyard, at school or in public will come with obtaining a service dog trained to alert care givers to the wadering behavior.

Thank you so much for your support.

www.autismboy.net
http://blog.autismboy.net

Every Parent’s Worst Nightmare

2010-03-12T12:15:00.000-08:00

Most parents worry about good grades, good friendship choices, and helping their child leave the nest someday (as close to 18 as possible :-) ). We teach our children to be mindful of strangers but let them freely play with neighbor kids, or on the playground.

The idea of our child going missing is often something we only think about when a horrible news story about an abducted child comes over the evening news. Instead we try to foster independence, self awareness and self growth.

However, the moment you discover your child is missing sends a panic through your body. Fear consumes your body and mind cascading over your body, wave after wave; heart racing, fighting back tears, trying to stay intellectually stable. You find yourself search for your child, you running from house to house, person to person looking for someone, anyone who has seen your missing baby.

It is the most horrifying feeling I have ever known.

Most children naturally seem to understand boundaries. They don’t leave these natural boundaries staying close to their parents and the safety of loved ones who will protect them. When a child goes across the street to play with a neighbor they check-in with a parent and ask or tell them where they are going; for an autistic child this is not always the case.
Many autistic children lack the understanding of boundaries. They wander away from their families, quietly and stealthy slipping away. When they are called for in a panic voice to return; they do not respond. Not out of disobedience, or intentionally to be difficult or cause alarm….But because they can’t.

An autistic child that wanders will do so more than once. A frightful and terrifying experience to be relived each time the child finds their way past the locked and chained doors, door alarms, window alarms and the many other carefully placed precautions.

A horrible nightmare to be relived over and over; you wonder, should I place my child in an institution for safety. Safety from what? The orderlies that may molest or kill your child; a peaceful loving angle who means no person or being harm. Would my child an autistic child really be better in an institution unable to communicate any wrong doings? Or with the loving family who insures many therapy hours and loving interactions?
No you instead devise more and more crafty ways to keep your child safe. Buying new locks, looking for new therapies, new alarms removing any possibility that escape and wandering will be possible. Quietly, hoping and praying to whomever will listen that this need to wander (called elopement if autistic children) will someday pass.

BlissTree on Elopement

Elopement Resources

Scientific Study

FORWARD STRIDE'S CHALLENGE

2010-03-10T14:45:00.000-08:00

My son Alex has been receiving service through Forward Stride for close to 3 years. Forward is one of a handful of centers accross the United States that combines the art of therapy and horse back riding. Many individuals respond better to this type of therapy (Hippotherapy) than traditional therapies of OT, Speech, etc...

Forward Stride (in Beaverton, OR) is facing financial challenges and needs desperately to close a financial gap. The bottom line is that the organization must raise at least $35,000 between now and the end of June, if they are to provide uninterrupted service to the clients.

There are several strategies in place to raise these funds. The word is that, to succeed, they need help.

Currently a raffle (The Paws Up Raffle) in place offers a chance to raise another $21,000, if they sell the remaining 420 tickets by the end of April.

SUPPORT FORWARD STRIDE BY BUYING OR SELLING RAFFLE TICKETS

To ensure that Forward Stride continues to make a difference in so many lives, they really need your help.

You can support Forward Stride by entering our raffle to win a stay at Montana's famous Resort at Paws Up! The Forward Stride Equestrian Getaway Package includes a three-night stay for two adults at a luxurious Meadow Home, 5-star meals, and two activities for each person. The prize certificate has a $3,500 value and can be used to craft an experience that draws on the many options available at the Resort at Paws Up. (Learn more about the possibilities at www.pawsup.com.)

You can also help by selling tickets to your friends. Tickets are $50 each. Only 500 will be sold. The winner will be drawn at random on May 1, 2010, at noon at Forward Stride. The winning certificate will be good through May 1, 2011. (Reservations are required. Airfare is not included. The winner is responsible for applicable taxes.)

To obtain tickets, call (503) 590-2959. Or stop by the Forward Stride office between 9:00 a.m. and 2:00 p.m., Monday through Thursday.

http://www.forwardstride.org

Speech Update

2010-02-23T19:05:00.000-08:00

Been listening for SH & CH in phrases lately. Alex can say them in all word postions with reminders.

Also played with TH, today - he is trying very hard to get his tongue out and blow to make TH (and not F).

You can do it, Alex.

--Kristin

Diamonds are a Boys Best Friend

2010-02-23T17:46:00.000-08:00

Sitting in the front of the shopping-cart while we waited to pay for our collection of goodies found at Toys-R-Us; Alex softly commented "Diamond...Diamond....Diamond". The soft words were not directed at anyone in particular. For an onlooker it would have been nothing more than a baby quietly babbling to himself.

I myself was busy focusing on the clerk who was moving painfully slow through the checkout line. So I did not notice what the happily contented 15 month old was saying or talking about.

It was Shelly a friend who was with us who pointed it out, "The shopping cart has diamonds!", she said. Indeed, the basket of the shopping cart was a continuous pattern of interlocking small diamonds. Alex's fingers were going in and out of each diamond as he quietly whispered "Diiaaamond".

Autism is often marked by high intelligence in isolated areas, while communication is slow to surface or never surfaces. Because of this they often do not test well and are labeled, retarded.

Individuals that eventually find a communication path often describe themselves to be very normal on the inside. They are just locked-up inside themselves.

2010-02-22T14:38:00.001-08:00

Communication by Silent Negotiation

2010-02-18T13:38:00.001-08:00

Speaking does not come naturally to Alex. He prefers it to sign language or pointing to pictures; still it is NOT easy.

So how does an autistic 5 year old negotiate with his 3 year old little brother that he wants a toy or a turn. Usually, it starts with a soft "my turn" or "Alex's turn". Hard words about sharing for any toddler. Little by little the urgency in Alex's voice will get faster and stronger, until he gives up; or does he?

Alex processes a very strong problems solving skill set. He realizes he can only try and communicate with his 3 year old brother; but results are not guaranteed no matter the quantity or quality of the words used.

Alex instead moves on and choose another toy or activity. But not just any toy or activity, but one his brother will want. Alex makes a very calculated choice to engage in a toy his brother will want more than the toy he is trying to get from his brother and begins to play.

Within seconds it never fails. Dylan seeks the toy or activity Alex has chosen. Alex of course gives this toy or activity up willingly. He after all never wanted it to begin with. He wanted what he could not find words to negotiate for.

CLEVER BOY!

Benefiber

2010-02-15T14:01:00.001-08:00

Benefiber, at least the one we get in the store, is made from wheat or corn. Alex is allergic to both. Benefiber is gluten free. But is possible that the wheat and corn allergies are contributing to his ongoing constipation problems? I am not sure. Even the Naturalpathic Doctor is not sure. But like most things we have tried it might be a shot in the dark. But it seems like a safe concept that we change is fiber supplement to a non wheat or corn based choice.

I have come across several on the web but have decided to try one the Natualpathic Doctor had casually suggested over a year ago when we first saw her. TrueFiber! Since, I have only ordered the supplement and we have not tried it yet. I left to hope and wonder.....

--Alex & Dylan's Mommy

Melatonin

2010-02-15T13:40:00.000-08:00

Ok, I was doubtful if Melatonin would do anything. After reading countless entries all over the web about Melatonin and talking with other family members who had tried it; I was not sure it would be helpful in getting Alex to sleep better.

I WAS WRONG!

Like most supplements and natural medical interventions. Some work for some people and not for others. Melatonin does not work for my husband or my mother-in-law but it has worked wonders for Alex.

Before trying Melatonin we even tried another pedatrician prescribed drug called ..........; The side effects of this medicine include increasing hunger (weight gain) and sleepiness. It started off seeming to do just than. It took the edge off the night time routine. Instead of Alex finally falling asleep at 11:30 or midnight he was falling asleep at 10. A few tears involved but much earlier. He seemed to want to eat more. Another good thing to see.

However, a month into the prescription and the side effects are tapering off. Alex is instead more constipated (also another possible side effect) the sleepiness has worn off, and eating seems to be back to the starting gate.

Melatonin on the other hand has been an instant success. Alex get his melatonin at 7:30. We want him asleep between 8:30 and 9:30pm so that he get a full nights sleep before waking at about 8am.

The first night he seemed very drowsy at about 9pm and very willing went to sleep. I wondered is this just a coincidnece? or a fluke?

Night two not as good but still asleep at a reasonable time. A few more tears involved but still better than before.

Night three and every night since (2/4/2010) has been wonderful. He looks sleepy and wants to go to bed by 8:30 -9pm. No fighting. No tears. Just a regular bed time. He lays in bed for 10 to 15 minutes (with mom or dad, occassionally by himself) and out like a light until the next morning.

Ahhhh, my good sleeper has returned.

I don't know if the sleep problems have to do with the return of the yeast or if it is because it has been a very grey winter. Whatever, the cause of turning what was always a child who went to sleep like clock work into a restless, unable to get to sleep, very poor sleeper; Melatonin has helped him.

I still don't believe it would work for everyone. I know first hand from others that it does not. But for Alex and our happy little family it has been very helpful.

-- Alex & Dylan's Mommy

The Yeast Monster Returns

2010-02-15T13:23:00.001-08:00

Alex's tummy had been flat. Alex's was having bowels without Glycolax. But no more. Gradually, over the course of several months Alex began chewing on his shirts. Running around the house. Climbing on furniture. The constipation returned, and so did the Glycolax. The budha belly returned. And then new symptoms. The child who once slept without any problems can not fall asleep no matter how hard he tries. We had to stop giving him his methyl B12 shots incase they were contributing. But unfortunatly the problem persists.

THE YEAST MONSTER IS BACK!

Alex is on a self imposed "Simple Carbohydrate Diet" or should I say very little carbs. He is gluten free and casin free.

So a trip to the doctor was in order. Alex's new prescription of supplements....

Enhansa - 1/4 small scoop work of gradually to 2 small scoops a day
Melatonin - one dropperfull at night
Vitamin D - (maximum of 5000 IU/Day) we are more around 3000 IU/day because of the sources in food and other supplements
Enzymes - With meals
VitaSpectrum - Multivitamin 1 scoop a day
Methly B12 to begin again when sleep is better (we use Creative Compounds in Tualitin City, OR)
Fluconazle
Benefiber - 3 tablespoons daily (adult dose; this makes me very sad)
Glycolax -3/4 teaspoon daily (or more if needed)

By Alex's Mommy

Bathroom Success

2010-02-03T10:02:00.000-08:00

Alex has been constipated since he was 9 months old. I would feed him nothing but prunes, prune juice and breastmilk for days before he would have a hard bowel. Eventually this was part of what led to his disinterest in food, which contributed to the lack of a rotarty chew developing, which leads to speech issues.

Sometime between 9 months and around a year of age Alex started on glycolax. This has been a very helpful supplement whenever constipation was causing problems.

Well in you have a life time problem with constipation making the leap to bowels on the tiolet is not an easy one to make.

So after much, much reading about bathroom power struggles in toddlers and young children I came accross an article that addressed the dynamic.

All articles suggest you should not try to bowel train when constipation is an issue. Not realistic in a child with chronic issues around constipation. I have spend 5 years trying diets and supplements of all kinds to resolve the constipation....

So the next piece of advice was to remove the dynamic about adults or care givers asking him to use the restroom. We'll not another thing done easily. Alex has a lot of care givers and therapist in his life. However, the person who had the bathroom success with Alex is the one with least dynamic around the bathroom with him. The speech therapist.

He went to the restroom on his own number 1 & 2 no prompting, no encouragement nothing all his own of his own free will. Wow!

I know this will not be the end. We have a long way to go. But still I think Alex deserves a big congratulations for his very first success of a number 2 on the potty.

Go Alex!

No More Fluconazole

2009-09-07T17:13:00.000-07:00

Alex has had high markers for yeast in his body for sometime now. He had been on a short dosage of Nystain and Fluconazole before. However, the yeast seemed to rebound after the treatment ended.

So after some additional blood work Alex went back onto Fluconazole the treatment plan just ended about two days ago and we are already seeing marked increase in negative behavior. I am hoping that the yeast is not already coming back.

Last night and today have been a nightmare. Our normally well tempered child has turned into a monster who can not be left alone for 20 seconds without him trying to do something that he clearly knows is wrong.

Good news is bowels still seem good. I just checked his stomach for bloatedness and it does not seem bloated. So this behavior could be a reaction to somthing other than ending the Fluconazole treatment.

AutismBoy.Net Now Has A Website

2009-08-19T20:50:00.000-07:00

After much planning I have finally launched the AutismBoy.Net website for my son Alex who is now 5 and has Autism. Check us out at www.autismboy.net