When I arrived today, Brittany was there and was getting ready to
start Tony’s OT session. During Tony’s OT session, I was planning on
cleaning up the living room but when she was taking him into his room
he grabbed my hand and wanted me to come in for the session as well.
I told Tony I had to go to the restroom and would come in as soon as I
was done. He did not want to go in without me, but was fine with it
once Marlaina joined him.

This was the first OT session I have sat in with Tony. So it was good
because I got to see the things Brittany was working on with him.
First, she handed Tony a board and told him to pick a color and place
the token in the slots on the board. He had no problem completing
this task and seemed to enjoy seeing the tokens slide into place.
After Tony completed this, she started to work with him on using
scissors. They found a page in a magazine that had a picture of
water and then proceeded to find pictures of fish to cut out and glue
on top of the water. Tony seemed to have a little trouble working the
scissors but liked the part where he got to glue and pat the fish onto
the picture. After this Brittany was working with Tony on drawing
things on a a piece of paper. She was trying to get him to pick a
color crayon and then draw a circle like hers. We all know Tony LOVES
his crayons and could not pick just one, but wanted the whole box.
This led to him becoming extremely upset and having to end OT early.

After Brittany left, Marlaina took Tony upstairs for a nap. This did
not last too long since he never ended up falling asleep and ended up
coming back downstairs. The rest of the afternoon Tony and I played
with the people and went outside to play in the bus. While we were in
the bus, Tony rolled down all the windows (which he does by himself
very well!) and sang out them. He did have trouble rolling them back
up and even tried to put turtles hand there once to see if that would
help. When he was ready to leave the bus he got up to the front
quickly and was trying to get out without me. I put my arm around him
to help him out and he bumped his head on the side of the bus. Even
though he didn’t hit his head hard, he was quite upset after this but
was comforted as soon as he saw his mom. Once we were back in side it
was quite evident that he was very sleepy and ready to go night night.
So Anton took him upstairs to go to sleep.

Today was a good day with Tony. When I arrived he was eating his
waffle and just talking away. The last few days, I have noticed that
Tony has been putting words together in combinations that actually
make sense. Usually, he gives just one or two word answers the most
common being ‘yes’ or ‘no’. Tony was even singing songs from his
favorite shows clearly!

We started out the day by playing with the loving family. When Tony
was done with them he kept saying ‘bag’. At first I thought he must
be trying to say bed, but after I tried to build one he kept looking
at me and saying ‘bag’. I looked around the room for this ‘bag’ but
couldn’t find one. He was becoming agitated that I couldn’t help him
find this bag, so we went to find Marlaina to see if she could help.
Marlaina was as dumbfounded as I was, we had no clue what bag he was
talking about. So Marlaina handed Tony one of her purses thinking
this was what he wanted, but it still wasn’t. By this point Tony was
very agitated and began to have a tantrum. I tried to distract him
but nothing was working until Marlaina found something that would,
ooze.

When she pulled out the package of ooze, I was thinking no way he is
going to like this! But he was looking at it fascinated and wanted
me to take it out. At this point he was calling the ooze ‘water’
(it’s sort of a greenish-blue color.) I took it out and put it in my
hands first and tried to get him to touch it. To my surprise, he
loved the way it felt on his hands. I told him that its different
from water and its called ooze. After telling him this a few times,
he finally started to refer to it as ooze. This kept Tony busy for at
least 30 minutes and he completely forgot about the bag!

After Tony was finished with the ooze, he said ‘clay’ and immediately
went to pull it out. I started molding the clay into different shapes
and getting tony to identify them for me. I made a ball and after
Tony identified it, he said ‘more ball’. So I decided to make this
one smaller and try to introduce the concept of ‘big’ and ‘small’. He
repeated me when I said ‘small ball’ and ‘big ball’. We also made
cookies and pizza out of the clay. Tony pulled a wooden knife and a
pair of scissors out of the drawer. I showed him how we cut the
cookie and pizza in half with both of them. He didn’t try to mimic
what I was doing so I put my hand over his to force the action. Then
as we cut it into several pieces he started counting them.

After the Clay we watched a few shows and then Tony was off to to take
a nap. Overall today it seemed like Tony was really eager to learn
especially when he was exploring with his hands.

Well the good news today is that Tony was feeling a lot better! When
I arrived this morning, he was eating his breakfast which consisted of
chicken and pretzels.

We then proceeded to his room to play with the loving family? ( I
think I have their name right this time). As Tony was putting
everyone in the bus to go on a bus ride, I asked him who everyone was.
He pointed out Mommy, Daddy, Tony and Sissy but to my surprise Tony
has named one of these people after another person, Jill. Since he
was adding more people, I proceeded to ask him “where’s Danielle?”.
He didn’t respond, so I guess there is no Danielle for now. Maybe I
will work with him on that…lol.

After we were finished with the loving family, Tony decided he wanted
to color with markers. When I got out his markers, he proceeded to
pull out the clothespins as well. The other day Morgan and I had
colored some of them for him and he was going through them looking for
one of each color. When he couldn’t find the red one he said “red” so
I colored one of them red for him. I then got him to pick 2 colors
and alternated them on the pin. I also tried to get him to squeeze
them open to attatch them to a piece of paper and squeeze to release
them. I figured this would be easy for him since we practice that
with the toothpaste when he brushes his teeth. He didn’t have much
luck, so I put my hand over his and helped him. He didn’t like this
way of taking them off, so he just pulled them off.

The rest of the day was a little difficult. He seemed to not want to
be seperated from his mom as at all. Even being in the other room
would upset him. I figured when Jill arrived, he would be fine
without Marlaina but he still wanted to be by mom all the time. After
Jill left he went upstairs to take a nap. Hopefully, tomorrow will a
be a better day for Tony!

Well after having 2 days of training this week I’m finally back! This morning when I arrived, I was told that it probably wouldn’t be a very productive day since Tony wasn’t feeling well. Apparently, Tony hasn’t been getting enough liquids since he hasn’t been able to drink his pink water. This has led to him being severely constipated.

So today was spent trying to keep him as comfortable as possible. It seemed like about every ten minutes Tony would arch his back over and start screaming and shaking. I felt so horrible for him. I knew he was in so much pain but there wasn’t anything I could do for him. I would try to rub his back, but it seemed like he just needed his Mom. Usually, he would calm down a little when Marlaina would hold him.

In between the bouts of pain that came and went, Tony showed me his new Crayola wonder set. It came with color wonder paints, markers and coloring books. The markers and paints are clear but when they touch the paper, they turn the specific color. I love the no mess! He also got some more little people? (not sure exactly what their called), bear house and some more accessories for his other house. Latley, Tony has had an obsession with these little people. There’s a Mommy, Daddy, Tony and Sissy which he likes to pretend play with. For awhile “Tony” was MIA but thankfully Morgan found him.

Hopefully he will feel better tomorrow!

We found Tony.

Somewhere amidst the screaming and yelling and howling and flapping hands and manic mood swings and constant nuclear meltdowns and demands for “pink water,” we found Tony.

He was in there all along, but the haze of fructose had sent him deeper inside his own Autistic self and life had spiraled into utter chaos for the entire family. And in the midst of Tony’s ferocious fructose freak-out™©®, he also managed to misplace his favorite little plastic play character he has (also) named Tony.

In fact, he has a whole crew of Fisher Price “Loving Family” members whom with names which reflect our own names. There is “Sissy” and “Mom” and “Dad” and (of course)…”Tony.” He likes to pretend play with them (extraordinary, considering Tony is Autistic and is not supposed to be able to put himself in other people’s shoes) and put them in all sorts of situations like bathing together in a giant tub (it’s really a sailboat, you know!), sitting at a dinner table eating, or even giving each other hugs. When he can’t get the figures bent correctly, he asks for “hep” (help) to get them positioned just right.

Well, at some Buy Tadalis Sx on line. What is a generic pill. Tadalis Sx To find out about vBulletin, go to http://www. 23 ViagraKamagra, Kamagra Oral Jelly, Levitra, Silagra, Tadalis Sx, Viagra, Viagra Soft Tadalis Sx. point during the frenzied days leading up to our epiphany about Tony’s fructose intolerance, he had managed to misplace the “Tony” character and was absolutely inconsolable. We launched a SAR mission to recover the little guy, but our search initially proved fruitless. We again thoroughly combed the downstairs Friday night, and underneath a piece of paper and a new diaper we found our intrepid traveler. Somehow he had managed to evade capture by hiding in the least likely of places.

Once we restored him to his natural place (with his family) peace and harmony restored. The same goes for Tony and his Fructose intolerance…his natural place is a world without glutens, caseins, and now fructose.

There is a medical link between gluten/casein intolerance and fructose associated with a condition Tony had already been evaluated for—leaky gut syndrome. I won’t bore everyone with the volumes of information I’ve digested (ha!) over the last few days, but it merely confirms what our own experience has been—Tony can’t properly process fructose, and it puts him in a similar state that glutens do.

Friday, August 12th was spent with Marlaina’s parents in Murrells Inlet. It was a cloudy, often rainy day, and so we stayed inside. Tony behavior was fantastic, and his interaction with everyone was pretty typical, as was his creative/imaginative play. There were very few outbursts, and Tony was very much back to his lovable old ways.

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Today was a great day with Tony! He was back to his normal self and was a delight to be around. He was once again making eye contact and acknowledging me when I spoke to him. The majority of the day it was dark and rainy so we had to stay inside. Tony did want to go outside today and asked to do so several times, but was actually not upset when I explained we couldn’t go because it was raining. So we did the usual routine watch Nightmare before Christmas while painting and coloring. Tony also decided today to make a bed in the living room for not one turtle but all five of them! He also must have assumed they were cold because he put 4 blankets over them.

When it finally stopped raining Tony could not wait to get outside. As soon as we were out the back gate, I knew exactly what he wanted to do. As usual he wanted to play stop/go. I held him and ran with him for awhile but this gets tiring so I put him down and made him run next to me. As we were running, Tony noticed a white dog. He got so excited and immeditately ran up to the dog and her owner. He told the woman he was Tony and grabbed her hand as well as mine and said “gooo”. He wanted us both to run along aside him. By this time the dog had run off and she needed to go after her dog, so Tony said bye to the lady and her dog. He’s a very social boy! So by this time Tony was getting tired and we decided to go inside. As soon as we walked in the door he was already manding for turtle and cup. So Anton took Tony up to bed. So overall today was a great day. See ya next week!

8/10/06

This morning I arrived earlier than usual for the IFSP meeting. His
other therapists and the coordinators went over the progress he has
made so far and other skills they want him to accomplish. Tony seemed
to have mastered most of the goals set the last time they met. So I
will have to try to incorporate some of the new skills he needs to
meet into his play.

When the meeting was over Tony was just waking up. He didn’t sleep
long considering he went to bed around 6:30AM. Apparently, the pink
water that Tony absolutely loves has been causing his problems latley.
I have only been working with Tony for about 3 weeks, but had noticed
a change in his demeanor over the past few days. He had not been
making eye contact with me and wasn’t answering questions with ‘yes’
or ‘no’ which are usually pretty easy for him. It seemed more like he
was in his own little world. He also seemed to be getting upset a lot
easier, but I just assumed this was a result of his lack of sleep
latley.

I spent most of the day with Tony trying to keep him occupied, so he
wouldn’t get upset and his parents could relax a little. I could tell
they needed it! We watched the usual shows: Nightmare before
Christmas, Bear and the Big Blue House, and Wiggles. I also tried to
get him to paint and color but he seemed to get bored with this really
quickly. Morgan and I finally got him outside later in the day, but
as we were walking he seemed to spot the pool and of course he really
wanted to go to it. I knew this wouldn’t be an option today because
Marlaina had been up all night. So I picked him up and tried to
distract him by showing him all the boats. I got him interested by
telling him to help me count all the boats. He seems to be getting a
little fascinated with boats lately. Later on we went on a wagon ride
around the neighbourhood, I tried to point things out to him along the
way to identify but he was only interested in playing with the
crayons. Hopefully, he will forget about the pink water soon and we
can make more progress.

Okay fans and family of Tony…a portrait of what Autism and a 2-year old sounds like at two in the morning.

“AIIIIIIIIIIIIYAAAAAAAAAAAAHHHHHHHHHHHAAAAAAAAAAAAAAAAAAAAIIIIIIIIIEEEEEEEEEEEEEEEEE”

Maybe I need to start recording Tony’s outburst’s so that it’s a little more real?

We’re going on the 3rd week of Tony’s lack of sleep (and ours, of course), increasingly frequent hysterical outbursts at all times of the day and night, and his obsession with crayons, markers, a toy bathtub, Bear in the Big Blue House and of course…Nightmare Before Christmas. In between the madness, he displays some imaginative play and other NueroTyp behavior. But most of the time he is a complete and utter behavioral disaster area.

He has in the last few weeks started refusing to drink anything except his Glaceau “pink water” and his body is not getting any of the vitamins and nutrients we used to be able to disguise in his juice and rice milk. I looked into the ingredients of Tony’s new favorite water just now, and the key sweetener is Fructose.

Hm…he didn’t previously eat or drink too many items that were sweetened, and so I did a little research about Fructose.

Sure enough, since we already have Tony on a restricted diet:

As a result, biomedical intervention usually starts with a restrictive diet, such as the gluten-free, casein-free diet. Typically, foods will be restricted in a particular sequence, for example by eliminating:

Dairy products – both casein and lactose are considered problematic
Gluten, including grains such as wheat, barley, rye, oats, spelt, etc.
Eggs, nuts, and berries that often provoke allergic reactions in children
Fruits and vegetables that contain salicylates, phenols, and other substances that may cause a reaction
All artificially colored food, i.e., the Feingold Diet
All bi- and poly-saccharides, such as lactose, fructose, starch, etc. (the Specific Carbohydrate Diet)

Whenever we have had these sort of extreme behavioral issues, we have found that Tony has had an infraction of some sort, usually related to Glutens. The last time his behavior was this “off the charts” was a month ago when he was having a terrible reaction to mosquito bites and we used benedyrl to counteract his inflamed bites. After a week of screaming and no sleep and erratic behavior (he actually started flapping his hands and walking on his toes again) I had an epiphany about what had changed in his diet, and the only thing were those pink little tablets of diphenhydramine.

Hm…pink…and coated…

Did a little research into how those pills are made, and BAM…found out some of the ingredients include artificial dyes, and GLUTEN.

We quit giving Tony the medicine and his behaviors started clearing up by the second day.

Looks like we have another round of detox to go through…but this time will be difficult since Tony is now refusing to drink anything but his precious pink water. Here’s a nice link that further explains the whole Fructose issue.

Ah…the joys of Autism.

Since we’re still in transition between therapists and only have Danielle now, it seems like I will be adding more of my voice to the record of Being Tony. This is probably a good thing for me on the one hand, since I have a very different perspective of what life with Tony is like “after school.” In going back and reading a lot of the entries of the blog, I realize that it paints a much more rosy picture of life with Tony than is actually taking place. I guess you can call this “fair and balanced blogging.” (Gads, I really hate Fox News for coming up with that.)

So, it has now been an hour and a half since Tony first woke up screaming hysterically, and he’s still going strong. Nothing will soothe him. Like an addict, the one thing that might soothe his soul is the very thing now torturing him.

Autism and addiction go so very well, hand in hand…

We have our all-important IFSP in the morning, and unfortunately we don’t have anyone who knows Tony ABA program to speak for it in front of our state-appointed Early Interventionist and her boss. That’s life in South Carolina for you. We have to stick up for ourselves, since no one else seems to care.

Was that harsh? Yeah, I hope it was. This state and country are facing an Autism epidemic that most refuse to even acknowledge, and funding for therapy, treatments and care for these disabled kiddos is a farce. We have federally funded companies out there “providing services” for us who make more money as administrators than do our actual care-givers. How does this even make sense?

Well…there’s my rant for the evening. I’m sure as time goes by and I continue to be the main figure updating Tony’s blog, you’ll be reading a little more about all of these issues.

Thank you for reading, and do drop back by soon…
Anton the bleary eyed

PS: I feel badly for Morgan, who is forced by circumstance to be a brave 11-year old and put up with this madness. No one here has slept much in the last few weeks, including her.

AUGUST 8TH
When I arrived this morning, Tony was still upstairs but within a few minutes he was downstairs and Morgan was making him a waffle. While eating his waffle Tony manded for “nightmare”. So I got Nightmare before Christmas and we proceeded to his room to start watching it. He was very talkative this morning so I figured it would be a good time to slip in some ABA. He wasn’t responding to any of the questions but did like the motor imitation. He’s really good at that and imitated me everytime. Then today once again he decided to make a chair for turtle to sit in. He manded for the turtle, pillow and blanket. Tony even seems to check on turtle and adjust the blanket for him.

Jill came this afternoon and after their session Tony and I decided to go on a wagon ride. On the way out of the house, Tony noticed the chalk by the door and decided that he wanted to draw with chalk on the sidewalk first. After telling me he was all done, we went on the wagon ride. I tried to take this as an opportunity to get him to identify things we rode past but he never responded. When we got back to the house we watched Nightmare before Christmas and started painting. I got out Tony’s paint shirt, paint and some paper but asked him what else we needed. He responded with brushes! After he was all done painting I tried to get him involved playing with some of his toys. He seems to like the ones that have music. He really seemed to enjoy the sesame street saxophone and started to dancing to the music. Overall, today was a good day for Tony. See you tomorrow!

AUGUST 7th
Today was a long day for Tony. When I arrived this morning Marlaina was making breakfast for Tony. As he was eating his waffle, he manded for “nightmare”. So we proceeded to his room to watch Nightmare before Christmas. During the movie, Tony decided he wanted to paint. He’s gotten pretty good at knowing what we need to start painting. As I was grabbing the paint shirt which he manded for, he was already getting the materials out we needed brushes and paint. Once he was done painting, he then manded for Elmo. While watching Elmo, tony decided that we were going to make a chair out of his cardboard bricks. After making the chair, I figured Tony was going to sit in it but he had other plans for it. He then manded for turtle, pillow and a blanket. I figured he was going to lay down in it while watching Elmo. He then layed the pillow down and put the turtle on top of it. Tony then proceeded to cover the turtle with the blanket and said “night night turtle”.

This afternoon, Tony was acting pretty tired. We mostly flip flopped back and forth between watching Nightmare before Christmas and Elmo. I tried to work some ABA in and ask him some questions but he never responded even when I tried to prompt him. Later on Tony decided he wanted to go outside so we drew with chalk on the sidewalk. I tried to take this as another opportunity to get Tony involved in some ABA but he still didn’t respond. After we finished with the chalk Tony wanted to go on a wagon ride. But since the wagon was full, I got him to go behind the house and play his favorite game stop/go. He seems to love this especially when I am the one holding him and running…lol. But overall it was a good day. Hopefully we can work on some ABA tomorrow.

Many of Tony’s fans and family are probably wondering why his site hasn’t been updated in more than a week.

Well…

We’re going through a transition right now with Tony’s family of educators (ABA therapists), with his Tall Blonde Girl Whitney off to grad school on the beaches of Wilmington, NC, and Parker suddenly leaving us as well. We do have Danielle, who we hired a few short weeks ago…and she is doing amazingly well with Tony despite any real formal training in ABA or in dealing with Autistic children. She seems to have a natural ease about her, and Tony really likes her. There is a natural chemistry there that just works. I’m grateful for that.

Today is my 40th birthday…and that’s all I have to say about that. But I felt that it was a good time to update Tony’s site, share some of my own thoughts about the last few months, and look forward to the future.

Tony’s last few weeks have had their typical ups and downs. On the one hand, we’re down two trained therapists…but on the other hand, Tony has a new friend in Danielle and she is handling things on a level most trained therapists sometimes never manage. Marlaina and I felt this transition would take the last of our sanity from us…and it came close…but Tony has remarkably shown that on his own, he can find his own way. This isn’t to say that his talented entourage is no longer needed; rather, Tony has progressed so far, and in so many ways, that when left to his own devices he will sing songs, interact with us while we’re working, and appropriately play with his favorite toys. In a way, this transition has proven to us what we “think” we’ve seen…his development of typical patterns of behavior and interaction.

This isn’t to say that Tony is any less Autistic, per se, but he has shown in the last few weeks just how radical his changes have been. When he plays quietly by himself, these days, it isn’t obsessive stacking of blocks or lining up of objects (although he still occasionally does this with crayons) but more like creative play with his plastic people (there’s “a Mom” and “a Dad” and “a Sissy” and even “a Tony”) who he likes to have interact with each other in a bathtub.

Yeah…they apparently love being in a bathtub together! I like to think he’s really wishing for them to be in a SAILBOAT…but that’s just me. You all know how I feel about sailboats. Note to self: Stay on top of teaching Tony “Where’s our sailboat?”

His plastic family has conversations with each other…many times about crayons and Nightmare Before Xmas (his FAVORITE movie of all time) and even his latest favorite drink: pink water. It’s a vitamin water made by Glaceau (Hey, guys, sponsor us already!) and he absolutely craves the fortified liquid. Oh, on that note, Marlaina and I believe Tony has figured out that we’ve been spiking his drinks with other vitamins and nutrients (Omega 3/6 and such) and he’s sort of gone on strike with most of his sippie cups. He now prefers to drink out of his Wiggles cups (What, you don’t know who the Wiggles are???) and insists on watching us pour the water straight in from the bottle.

He’s too smart.

Thanks to his incredible speech pathologist Jill, his language skills are more expressive than ever. And now, when he wants something and doesn’t know the word for it, he actually points. This is a MAJOR milestone in his development! A few nights ago when I put him down for a nap, he requested “pik” over and over again. I didn’t know what “pik” meant…and so I asked him what “pik” was. He kept saying it over and over and over…and finally got so frustrated with me that he POINTED towards his bookcase and said “PIK!”

Dumb dad that I am, I didn’t realize that he was asking to “pick” one of his own videos, instead of me just calling out titles. He had been working on this with his therapists, and was pretty in control of knowing what HE wanted. BUT, better still, he POINTED AT SOMETHING he wanted. I was blown away by this revelation.

He has continued to point at some objects, in association with verbal commands…so this is a brave new world we’re entering.

Verbally, he continues to put words together and make small sentences. Tony also seems to be babbling incessantly these days…like he is struggling to make his mouth form the words he hears in his head. He still has miles to go…and yet he has come so far with communication. (Did I say THANKS JILL enough? I need to!)

Tony is affectionate in ways that we’ve read most Autistic children are not. He actually asks for, and receives (of course) hugs and kisses. And he does thrive on interaction with us. Sometimes that is hard to remember when I’m in the middle of a business call or Web site update or some other advertising-related aspect of our business. Life here is sort of ¼ ad agency, ¼ Tony’s Restaurant, ¼ Pre-School, and ¼ Zoo.

That’s Being Tony for you!

I look forward to the next 40 years of Being (with) Tony.

Anton – “a Dad!”