World Autism Day: Light it Up Black and Blue? - AGE OF AUTISM

Today was a day filled with fluff pieces about autism, but I have nothing to celebrate. Lets face it....autism sucks any way you look at it.

Kim Stagliano from Age of Autism says it all. Today is April 2nd. Some are celebrating Autism Awareness Day. I am not. To me, today is like Good Friday and Yom Kippur - somber days of reflection. World Autism Day: Light it Up Black and Blue? - AGE OF AUTISM:
'via Blog this'

Autistic by Injection T-Shirt Featuring Mickie's Portrait

A few years ago I created a painting of my son at the age when he started wondering away and the first signs of autism appeared. 


I have turned this painting into an autism/vaccine awareness design.


The merchandise can be found at Cafepress.......
http://www.cafepress.com/zuramasboutique/7984595

and also at Zazzle
http://www.zazzle.com/autistic_by_injection_tshirt-235279507893382751

The Autism Epidemic

Mickie's Love of Music

Mickie may not be able to sit still for a minute, but every morning before the bus picks him up for school, he sits and watches some parts of the movie "Together". I say some parts, because he only likes the parts where the little boy is playing the violin.

Sleeping in the Bathtub

Last spring Mickie started to fall sleep in odd places including the bathtub, so I started to documented and put together this video. Shortly after he began to regress and I just didn't have the motivation to upload it, but I decided to share it now, since I thought it was cute at the time. I think he was looking for cool places to sleep-though we have central air conditioning, I guessing the bathtub must feel pretty fresh and cool.

Safety in a Home with a Special Needs Person

As the years have passed I have found myself making changes in my home that I never imagined, but the idea of being able to sleep the few hours at night without worrying about my son Mickie getting hurt kept me making the changes that have helped regain some sense of security.

One should never underestimate people with Autism. They are very smart, no matter how it seems and will plan for days even months a way around any security measures to get to what they want.

My son used to get into everything and for a time life was very chaotic for his sisters and me, so I modified our home as soon as a new behavior arrived. This has made it possible for him to roam free around his home, even at night, without getting hurt. He still needs to be watched when he is awake, but the changes have helped.

1. All outlets covered with metal plates (he used to rip them off and try to take out the electric cables, so don't use plastic, because they will rip them off)

2. Locked Kitchen (he also has an insatiable appetite and has pica)

3. Security doors leading to the outside (he is a wanderer)

4. Pictures bolted to the walls (took everything off the walls before)

5. All cabinets locked (used to empty them and make a huge mess)

6. Zero access to heaters and air conditioner units (used to try to pull off the cables)

7 TV enclosed in a wood case with plexy glass in front (used to brake electronics)

8 Clean floors (he would otherwise pick things up and put them in his mouth)

9 Cabinets are secured to the wall (he is a climber)

10 An outside valve to turn off the water in his bathroom (likes to run the water and flooded his bathroom years ago)Etc.....

A Box to Protect the TV Set

I wanted to share this, with parents who have autistic children, that tend to be destructive with electronics. I remember a few years ago having a conversation with a mom from Sacramento, who's son had severe autism and had already broken dozens of VCRs. Little did I know that I would be facing the same dilemma a few years later.

Mickie has always like watching TV and right around the time of his diagnosis liked it more then his own family-which wasn't a good thing. If someone stood in front of his view, he would just look around them as if people were mere objects.

Over the course of the last three years, he has gone from watching some TV to nothing at all. First he wanted the same DVD to play day and night then one day he just unplugged the DVD Player and the TV set.

Before he just gave up on TV, he broke quite a few DVD players and had many meltdowns because he would turn the channel and get a fuzzy screen, then wanted it changed back to the right channel, but didn't know how. One night after midnight he came to my door and took me by the hand so I could change the channel for him. He did this thirty times. I guess this is what psychology calls Obsessive Compulsive Disorder, but in Mickie it's multiplied times 10.

So for the last few months he hasn't watched anything and it bothers me, because he can always learn something even from a TV show, and he is so sensitive to people voices that it's impossible to get him to pay attention.

Recently while talking with my mom about this, she came up with the idea of building a Wood box in the closed and placing a TV inside, then covering the front with Plexiglas. Mom is always fool of ideas and she always comes to the rescue when I am at a loss for ideas.

This week I was lucky enough to find a good Samaritan who was nice enough to build the box we needed. From the room next to his, I control the digital box and the Television. He can't turn it on nor off. Last night I got everything to work and Mickie couldn't have been more thrilled.

When he got home from school today and walked in his room, and noticed the cartoons were playing on his TV, he smiled and that was all I needed to make my day.

Things Mickie Does

Every night before bed Mickie brings all his blankets out of his room and troughs them on the other side of the fence leading to the living room. They have to land just right and far enough from the gate, so he can't reach them- why? I don't know..........

Normally, it doesn't bother me much, but it's winter and some nights it gets really cold. A few weeks ago, when the heater broke and it took a week to get a repairman in, he still did it! I remember having to wear double socks, and pajama pants and I was still cold, so I can only imagine how he must have felt.

Soon After the Autism Diagnosis

I was looking through old photos this week and found a few from 1999, right after Mickie's autism diagnosis. He used to let our pets fall sleep next to him. He didn't play with them but he let them be part of his space.

Mickie Has Been Cranky

Yesterday, when I picked Mickie up from the bus, the driver told me that Mickie looked like he was crying on the ride back from school. I know they don't like him in that class and Mickie like most kids on the autism spectrum, can sense, when someone doesn't appreciate them. Something is not right with him, but I can't tell what it is.

Last night he fell asleep early, without his melatonin, but he was up by nine. I got up seven times throughout the night to check on him and every time I walked in his room, he was sitting on the corner of his bed wide awake and watching TV.

I was so tired this morning, that I woke up late. I didn't think I was going to have enough time to get him ready for school, but I did. I told the bus driver to tell the person who picks up Mickie from the bus, at school to please be patient with him, because he didn't sleep last night. I just feel that he is going to be all kinds of cranky today.

I couldn't be sure that she would remember, so I called his teacher. I let her her know about last night, but she said that he was actually being very good this morning. He was watching Dora the Explorer and was listening very quietly. Well who knew? Maybe he does better on less sleep. I wish I could say the same for me.

Mickie is Going to Private ABA School!!

This week I recieved a call from Mickie's school district to let me know that they would give the go ahead for him to be placed in the private ABA school I had requested back in May. Apparently, the current arrangement is not going to work out.

Sure I am happy, since it's what I wanted in the first place, but other then asking me to cut his nails and complaining about his farts, I never heard anything from the teacher that could have given me any indication, that Mickie was to much for her to handle.

I was noticing his lack of progress and he was coming home with his cheecks red and raw from stimming, which told me they weren't keeping him busy.

For all the money being poured into Autism, you would think, that our kids out to be making more progress, then they are. Everything he knows, I taught him!

A GLUTEN-CASEIN FREE DIET

It was March 2003 and Mickie was now 5 years old and has lost all speech by now. He had started to have these episodes. I didn't know what to make of them. He screams desperation, and as the weeks pass he gets worse. The episodes happen at school, at home, in the middle of the night. Mickie seemed to be in pain, but no one can tell me how to help him. No one in our house has been able to sleep-it's been four months. He would be happy one minute and sad the next. Late in May, I found a nice doctor who ordered some blood work upon my request.

One night I went as far as faking a head injury and taking him to Los Angeles Children's Hospital. It proved to be useless, because the doctor on duty that night refused to examine him. Another testament, that when an autistic person needs medical attention, he or she is treated like just another crazy person. I never took him back there again.

The next day Dr Alejandro, his pediatrician saw him and with the blood work being ready, was able to tell us that Mickie suffered from Malabsoption, but to not worry, that there were no toxins going into his blood. What I didn't know then, was how inaccurate that statement was. His Sed-Rate was at 33, which shows inflammation and It should be under 10. A few days later Mickie saw a Gastroenterologist. I showed him the blood work and he told me that Low IgA would make Mickie prone to gastrointestinal infections and that IgE, Mickie was to stay away from Dairy. Finally there was a reason for his unexplained pain!

I took him off milk and went a step further and took him off cereals. Within days the diahrrea had stopped and his pain had gone away.

The Fire

On February 14, of 06, there was an electrical fire in Mickie’s room. I woke up to a house full of teenagers screaming: "Mom, mom; Mickie's room is on fire". I ran out of my room towards the hallway and I could see the smoke coming out from under his door. Without even thinking, I pushed the door open and saw the fire reaching the ceiling on the left hand corner of the room. The TV was on and Mickie was sitting there on his bed, under the covers. He had no intention of getting out of there.

The fire looked like a giant snake and it was moving towards the closet on the other side where Mickie was. I ran in and tried to pull him out and he started to fight me. I had to grab him by his pajama shirt and drag him out. He still wanted to go back into the room. He didn't seem to have any idea of what had just happened. Danger awareness is one of the most disturbing issues parents with children on the autism spectrum have to deal with. Without a sense of danger our kids are prone to tragic accidents.

Keeping Mickie Safe

People on the autism spectrum, have no fear of death and no awareness of danger. Many are not afraid of large bodies of water. They are prone to wonder away for home. Wondering away is one of Mickie’s favorite things to do. Over the years I’ve adapted the house we live in to Mickie’s changing needs. My father installed two iron gates, one on the entrance to a hallway leading to the living room and the other leading to his siblings’ bedrooms.

One morning, in the spring of 2008, I walked out of my room as I do everyday, at 7 O'clock in the morning to find that the Iron Gate leading to the living room was wide open and the front door was unlocked.I remember latching the lock the night before. Who could have opened it? I asked myself. Then I remembered I had locked the lock, but it was almost dark and only one side of the chain was hooked on to the lock. I didn't even notice it. With all the precautions I take every day to keep Mickie safe, even to have earned the name of camp Gitmo, that mistake could have caused a tragedy. He must have had an angel watching over him that morning.

Tonight I had the opportunity to get away. I went to an art show opening, while my mom watched Mickie. For two hours I was just me and not the mercury mom or Mickie's mom, instead I was as any other person there, lost in a sea of artists.

I guess artists are the only people besides the autism moms, that I can related too now days.

When I got home I got a dose of reality. My mom said that Mickie practically kicked his respite worker out of the house, then when it was time for his dinner, he wouldn't let my mom turn on any lights in the kitchen, so she had to pretend, to look for something in the refrigerator, so she could see the supplements and medicines, he was supposed to take with his dinner. He then refuse to let her dress him and then took her by the hand and walked her to my little art studio and she had to sit on the couch for an hour until I got home.

Oh well, back to reality.

Need More Coffee!!

Its eight in the morning and Mickie just left on the bus. I need more coffee!!

I have been up since four o'clock in the morning. Mickie has been waking up earlier in the past few weeks. Sometimes he just stims with his voice, and that's okay, as long as I know he is happy, but for the most part, when he wakes up this early, he does it, because of digestive distress, and he cries and runs endlessly.

Some times I wake up to the sounds of his head on the floor. That's when everyone in the house gets up to try to stop him.

In the past month, he has had a few food infraction. He is on gfcf and SCD diet, but last week he ate a whole bagel, when he got into his oldest sister's room at five o'clock in the morning. I woke up to the sounds of him making regurgitation noises, which is what he does every time he eats. All the cabinets, pantry and refrigerator are kept locked, but I just knew he was eating something.

Two days ago, he sneaked a few bites of Mac & cheese out of his brothers plate. I wish, I had eyes on the back of my head, to watch his every move, but I don't, so I have to watch him suffer afterwards, when he is trying to digest all this junk, that his digestive system can't handle yet.

Mickie's Birthday

Last September 10th, Mickie had his 11 birthday. This year, I did better then last year. I was at least able to get through this day without crying. The day before, I went to the Farmer's market and bought the ingredients to make him a GFCF and SCD legal cake. Let me tell you, that it wasn't easy, but I pulled it off.

Mickie's siblings and his grandparents and I enjoyed his birthday cake, along with him. He wouldn't blow out the candles, even thought he can blow into a flute. He doesn't understand the concept of making a wish and blowing a candle, so it will come true. I did it for him and I made the wish for him too. I wished he would get better soon.
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