Tuesday, June 28, 2011

Routines

A routine I didn't mention at the early stages of my son when he was still a toddler. Before we left anywhere, he would have to jump over the seats in our vehicles, turn on the dome lights and honk the horn.

No matter what we would do, he just had to do these quirky things or he would go wild. This is before we knew he was autistic. We really didn't know what autism was at that time. We knew there was something wrong. One routine after another. After one routine starts and goes on for a while, it ends and a new one starts.

Trying to buckle him into his car seat was virtually impossible. He would kick and scream. He would have to turn on the dome lights, honk the horn and then he would be as calm as can be and get buckled in to go. We knew we didn't want him to do this all the time. When it's time to go, it's time to go now. I don't want to have to deal with fighting with my son when we want to go somewhere.

Every time though, we would have to cave in after a few minutes and make him happy just to go anywhere. Every routine had complete control over us. Until he flipped a switch, spun a wheel, honked the horn, lined toys up, etc...we let him do it just so he wouldn't throw a tantrum.

When he would tantrum they would last from 45 minutes to an hour. That was enough to bring us as parents to our knees. Screaming, kicking and crying. What were we doing wrong? I just wanted our child to be happy. If he could only talk to tell us what was wrong.

Every day is a new adventure. There are good days and they are very well appreciated. When there are bad days it is like hell on earth where anything we try to do is wrong and nothing makes him happy. I figured out though that when he is over-tired, that is when he is at his worst. That is when nothing is right and all he needs to do is nap. After a nap he is all better. Getting him to lay down for the nap or bed time is the real challenge.

Saturday, June 25, 2011

Denial

I forgot that looking back before when my son with diagnosed with autism how I was denying the red flags spotting that there were definite signs of autism. His little sister was born and everything he was accomplishing as a toddler stopped.

The very thought that crossed my mind was that he wants to be the baby. "This is why he's doing what he is doing. That's not autism. That's regression." It took the day of the screening and the final diagnosis of him being autistic that it finally hit me. There is something wrong. Time to accept those facts. Now what?

We are dealing with this one day at a time. I have a hard time accepting that when he get's older that more things will change. I have heard that when autistic children get older, they can get worse. That scares me.

I've been seeing this with his sensitivity. It's hard to wash his hair. He freaks out when I pour water over his head to rinse. I slowly and gently put shampoo on my hand and run it through his hair. He hates it. He screams. Cutting his hair is hard to. I use the clippers and the sound drives him crazy. I have him plug his ears shut while I trim. Afterwords I give him ice cream and tell him he did a good job. The whole time he is just trembling in fright. He is in sensory over-load. Also recently he has been flapping his hands in front of his face. Another symptom that has started coming into his life.

After its all done he is a happy boy playing and fighting with his little sister. Usually he plays off in the corner by himself. It has taken daycare and schooling to help him include himself with other children, especially his little sister. When she wants to play with him, he'd just ignore her and continue to play with his cars alone. He has gotten better to play with and be included in other childhood games. That's good news knowing that he is beginning to socialize.

Wednesday, June 22, 2011

Diagnosis

Before my son was diagnosed with autism, I was making excuses that he wasn't autistic. I was in such denial. I was constantly searching for clues and taking online free quizzes about his development skills. Even the quizzes would result in, "Probably Autistic."

Still, seeing those words made me think, "No, that's not right."

I was searching up MMR vaccines with thirmersol or mercury causing symptoms of autism, early signs of autism, aspergers syndrome, Attention Deficit Disorder (ADD), Attention Deficit Hyperactive Disorder (ADHD). I wanted specifics! "Tell me what I want to hear! My son is fine! He will outgrow these weird habits and start talking I know it!"

This may be why you are here reading this. You want to know the truth what is going on with your child. I know. I've been there. You know the truth but your thoughts are setting you back telling you that that's not possible. There is another explanation why my child is doing the things he or she is doing.

You talk to other parents what their child is doing or not doing. You compare you child to theirs. You want to know, "Is this normal?"

Deep down, you know something is wrong. You choose not to accept it like I did. You want to wait and see the results that everything is okay. Nothing to worry about, right?

You enroll your child in school. The teachers are seeing things your not. They also give you quizzes about what you see your child doing at home. You and your spouse take separate quizzes and then the school psychologist compares. You put in your comments. It boils down to where the school wants your child labeled. Finally, you get them screened. Diagnosis, Autism.

After that long day with the doctor, occupational therapist and speech therapist the results come in. The doctor says it appears your child has autism.

I took that news in trying not to choke up and held back. The doctor says not to give up hope. I knew this was gonna be the final result but I didn't think it was real.

After the facts were laid out, I also felt a sense of relief. Now, I know it's not all behavior problems. It's things inside that aren't connecting. We have to figure out a way to cope with this. He is our son and we love and accept him unconditionally.

I just hope I can break a barrier with you. Stop denying and get your child screened for autism. It may not be autism. Whatever it is you'll feel better knowing what it is and what you can do about it.

Monday, June 20, 2011

stress

Why is it when parents work so hard all week, coming home to kids who don't listen and being together as a family make your work life much happier then your home life? I cannot understand this. All I want is a happy family. Having an autistic son and a daughter who copy's his behavior makes things harder.

My wife works 3rd shift in a factory. I work 1st at that same job. We do this in order to eliminate day care and make ends meet. Do ends ever meet? Why is it so hard to get our kids to listen to us and make our home life happier?

The way I see it is that my wife has a certain way of raising our kids. When I get the kids is a different way of control. When were together as parents our kids take control over our household. They do not want to listen to either one of us. They fight and tell us "No."

They listen to my wife when it is just her watching the kids. They listen to me when I have the kids. Our structure as a family when were all together seems to diminish some days. Were unhappy. Then the kids settle down and then there is serenity where we can be happy again. It's the time of disagreement and the kids fighting and not listening that brings us to our knees wondering, "What are we doing wrong?"

Things would be totally different if just one of us could stay home. We are living as single parents raising these kids. Will things get better? I sure hope so.

With the intensive therapy starting for my son and my daughter getting out of diapers things should be getting back on the right track. God I hope so.

Friday, June 17, 2011

Fear

My son has never showed any fear towards anything that I can think of. He has been going into the bedrooms and basement with only a flashlight to shine things. When I turn on the light he tells me to turn it off. He says the lights hurt his eyes. He will push a stool to the lights and then pull the chains to shut them all off. The next time I go into the basement I can't see anything.

My 3 year old daughter is developing normally and having the typical scares and carries a security blanket. My son never developed a special bond with a blanket or a stuffed animal. He preferred to sleep next to a pin wheel or a matchbox car because he enjoys spinning things for visual stimulation. That is his security now that I think about it.

If I do not shut the doors behind me, my daughter will yell to "Shut the door!" She is afraid of monsters or something. She is very afraid of the dark. My son thinks it is funny to shut off the light and shut her inside the room. I think I need a social story to teach him not to do that. It scares his sister and he needs a visual aid to help understand.

Spiders also have my daughter frightened. My son does not show terror to something creepy like that and will pick them up.  My daughter will scream and tell him to "Stop that! That's scary!" The nastiest thing he picked up and put in a jar was a centipede. Those freak me out.

I couldn't imagine my life without fear. That would be the life. Franklin D. Roosevelt and John F. Kennedy said, "The only thing we have to fear, is fear itself." We can learn a lot from our children.

Tuesday, June 14, 2011

Interests

There is something about robots that my son Dane finds amusing. The Disney movie "Wall-E" for one.


It's interesting. A movie with very little speech has such an impact of entertainment on him. He would watch this movie back to back some days. To a point I had to get him interested on something else. I would read him a book and a while later he would want Wall-E again.

We gave Dane a radio controlled Wall-E robot for his 4th birthday. He took it to school to show the class for "show and tell." The kids thought that was pretty cool. It's funny how a cartoon that didn't get much attention to brought this much happiness to my son.

Wal-mart had a Wall-E bed set in the clearance isle with 2 sets of curtains, pillow covers, sheets and a comforter. I didn't get them. I told my wife what I seen and she wanted them. We drove back to the store and they were gone. I was kicking myself for not getting something my boy admired.

Several weeks later we were in a different area at a different Wal-mart. There they were. Cheaper even. 1 left. I got them. We dressed up his room with Wall-E and found a poster also to put on his wall. The look on his face was priceless.

When Robosapian came out, I wanted one. There it sat for the past 4 years. I had it way up high so the kids wouldn't break it. They were both looking up at it so I finally decided to bring it down and let them have at it. It is so funny watching them try to make it do its functions. They love the dance mode the best.



When I was young, a movie "Short Circuit" had a robot that reminded me of Wall-E. I showed Dane this and he liked it also. Pretty cool how something from my childhood can carry over to my children for amusement.

I'm glad to see that Dane has moved on to other things of interest besides his pinwheels and sandbox toys.  Anything that spins Dane would be so involved with.  He is maturing and his mind is starting to expand to other things.

Saturday, June 11, 2011

the Dentist

When I went in for my routine check-ups at the dentist I would have my son try to sit and watch what the dentist would do to my mouth. He would get curious and disrupt the dentist by turning on and off his light. We had to give him a small toy plane with spinning propellers so he would sit still. It helped that his Grandpa had his visit on the same day and could learn to trust the dentist. My son has quite a special bond with my father.

The day came and we had his check-up. He did good sitting but was having trouble with the light blinding him. After the visit, he felt happy because he got to pick out a small toy. He picked out a rubber frog. Over last summer he developed a likeness for toads and frogs. The visit resulted in him having 3 cavities! I didn't know what to expect having the dentist drill my sons teeth.

Luckily I had to work the day he got his teeth fixed. I was afraid the dentist wouldn't be able to perform his fillings. My wife had to take him and make sure he was okay and make it through alright. I wasn't prepared to witness what would be if he had a panic attack.

My son did very well for his first cavities. From what my wife told me he sat and did what the dentist told him to do. He had his mouth open wide the whole time but he had tears streaming down his face. He was terrified! My son's autism includes sensitive hearing and a sensitive mouth. He has to be prepared to cup his ears when a toilet or public hand dryer go off. I could only imagine what he felt with that dentist drill going off inside his head. That had to be extremely loud for him.

I'm glad that having his cavities fixed didn't scare him from dentist visits. My last dental cleaning was last week and he wanted to come with. I didn't take him but I'm glad that he wasn't afraid to go with me. What a brave little boy.

Wednesday, June 8, 2011

water, left out & noises

It really heated up this week.  Yesterday and today reached a high of 96 degrees.  For the rest of the week we're back into the mid 60's.  It will probably storm with this cold front moving in.  It was so hot in the house I had to set up a sleeping area in our basement so we could all sleep.  I'd run our air conditioner but our electric bill goes way up.  I switched over to box fans for our windows but from what happened last summer the bill was no different then if I ran the air conditioner.  Why waste the energy if the house doesn't cool down?  Just go downstairs I figure.

Dane loves water unless it involves getting his hair washed.  My sister-in-law bought a water sprinkler system from the dollar store.  She thought that the older kids would have played with it but Dane was the only one.  Allyson, my daughter, stayed in the clear because the water was cold.  Once Dane ran through it once, he had fun with his cousins spraying him with their super soakers.  I originally bought the water guns thinking Dane would play with them but he can't squeeze the trigger.  I'd like to go back and maybe find him a battery operated water sprayer so he can play and get back at his cousins.

Grandma had 5 tickets to see the same circus we just seen last week.  I do not wish to see it again but my nephews didn't see it.  Grandma took my 2 nephews and had 2 tickets left for kids 12 and under free admission.  Dane overheard that they were going to the circus.  I told him that he already seen the circus and now it is Damian and Tylers turn.  He went to our truck and threw the booster seats in the back and then buckled himself in.  There he stayed spinning the wheels on his little car.  I came to check on him from time to time and ask if he was going to come out and play.  He said "No" and that he's going to the circus.  As long as he wasn't getting out of control I thought I'd let him sit in the car until he was ready to come out.

A while later Grandma and the boys left and Dane came out.  He took it pretty well seeing that Grandpa stayed back.  He got out his power wheels jeep and rode around the yard with his sister on her 4 wheeler power wheels.  I got out the go cart and we chased each other around the yard.  Dane wanted a ride because I gave Ally one.  He would have had a complete meltdown if I wouldn't have but it was no trouble.

Dane has his therapy tomorrow and I have FML off of work.  I get to talk with one of the counselors with my wife to discuss how things are going and if we need to work on anything new.  The noises he is making sticking out his tongue and unresponsive when we talk to him is to be of concern.  The counselor wants us to try and capture on video what he looks like during the process.  It may be seizure activity and may lead up to an EEG scan on his brain.

Tuesday, June 7, 2011

Chelation

When I first got the results that my son was diagnosed with autism, I wanted answers. What do I do now? Who do we go to? Can we do anything about this? Will my child grow out of it?

Thinking back within the last decade, I don't recall ever hearing much about autism. Now, since my son was diagnosed over a year ago, it seems like it's all I hear about. Billboard signs, radio ads, TV, magazine articles, etc. I guess someone who doesn't have kids pays attention to things like that. After kids and becoming parents the first time, you ask yourself, "Is this normal for my child?" You begin to talk with other parents and compare your kids. You need to know.

My sister talked of a woman who has two autistic children who were given something that the woman said, "Changed their children and seen a difference within a week." Could this be a treatment their not telling us? What is it?

Chelation treatment involves chemical removal of metals from the body. Some people say it can help and even cure autism. Chelation has been used for lead poisoning with successful results. The chemicals in the chelation bind to the metals and then are excreted from the body by urination.

Some people think that thimersol, a preservative, mercury based vaccine is responsible for causing autism. By disposing of the metal people hope to reverse the effects of autism caused by the mercury. There may be potential dangers of using chelation therapy and really no scientific research backing up if it is safe and effective. I'm not sure. If your curious about the subject I suggest you do more research.

There are no studies linking mercury to the development of autism or showing that children with autism had greater exposure to mercury than children who are unaffected from what I've read up on.  So, what causes autism?  Genetics being mutated or a link to vaccines?  Someday we will know more about it from studies being done.

I don't know what to think about this cleansing of metals to help autism cases. It's interesting to know that it's out there but I'd have to check into it more before I went through with it. My child's safety comes first over any treatment.

Saturday, June 4, 2011

Humming & Flapping Arms

My son started flapping his arms and waving his hands in front of his face.  I guess that we are supposed to discourage this activity.  He hums and makes weird noises all the time also.

I remembered watching a 20/20 episode about a girl who was non-verbal who started to communicate at the age of 11 through typing.  When asked a question, she could respond with a computer.  How exciting is that a severely autistic girl taught herself how to read and write and communicate.  When asking her questions, she can answer by typing one letter at a time.

Carly Fleishmann describes what it is like to be autistic.

"You don't know what it feels like to be me, when you can't sit still because your legs feel like they are on fire or it feels like a hundred ants are crawling up your arms."

"It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can't speak."

"I think people get a lot of their information from so-called experts but if a horse is sick, you don't ask a fish what's wrong with the horse. You go right to the horse's mouth." 

My son bangs his head at times.  I often wondered about that.  She answered this and it is something to think about.

Carly says,  "Because if I don't it feels like my body is going to explode. It's just like when you shake a can of coke. If I could stop it I would but it is not like turning a switch off, it does not work that way. I know what is right and wrong but it's like I have a fight with my brain over it."


About my son when he hums and flaps his arms, I found that this is what Carly had to say.

Carly: "It's a way for us to drown out all sensory input that over loads us all at once. We create output to block out input."

I don't know what made me think of this episode or how I remembered it but somehow it just crossed my mind tonight and I wanted to research it more.  If you go here http://abcnews.go.com/2020/MindMoodNews/story?id=8258204&page=1 you will be able to read more on her or go to her site here http://carlysvoice.com/


Watch Carly's story on 20/20 here http://youtu.be/34xoYwLNpvw



 




Wednesday, June 1, 2011

Shrine Circus

I woke up this morning crammed in the middle of Dane on the edge by my wife, Dawn.  I was laying on my side next to Dawn and Ally was curled in a ball next to me on the other side.  Glancing up at the clock it read about 6:30 A.M.  I was thinking to myself that I'll try to roll out around 7 and maybe get the house picked up to start the day.

Just then Dane woke up and wanted to lay buy me.  He walked around to the other side of the bed where his sister, Allyson was sleeping.  He said he wanted to lay by daddy and started hitting her in her sleep.  What a way to start the day off.  Ally started crying and Dane kept saying that "Daddy's naughty."  He finally went to his room and slammed the door.  I peeked in and he was gazing at his guinea pigs.  As long as he's quiet and content I'll stay clear from him.

My wife told me later in the morning that Dane's therapist had given her 2 free passes to the circus in town.  I wasn't sure about going and taking the kids but I called up Grandma and asked if she wanted to go.  She said she'd come but have to catch a quick nap first.  That was fine because the show didn't start for 6 hours.  For the next 3 hours Dane kept saying, "Go to the circus?"  I told him it doesn't start till 3.  He wanted to push a chair next to the clock and turn the little hand to 3.  He thinks that makes it 3 o'clock by doing that.  I tell him that's not how time works and he still needs to wait a few hours.

I was surprised how well the kids sat through the 2 hour show.  Dane cupped his ears a lot from the crowd and music.  I didn't like how people kept walking through with snow cones, popcorn, toys, water, glow sticks, etc...The whole first half was people selling over priced junk.  We did buy a bucket of popcorn for 10 bucks, cotton candy for 4 bucks before the show.  During, I bought a snow cone in a lighted cup for 10 bucks for Dane.  He became to focused on the cup that we had to shut it off so he would watch the show.  Later, Grandma bought Ally one so she had a lighted cup also.

Dane with elephant in background
By intermission time, Dane wanted to leave.  I told him that it was almost over.  I think the noise was getting to him but he did tough it out.  Just before intermission ended, he had to pee.  Then Ally wanted to go also.  Dawn and Grandma took the kids to the bathroom while I held our spot.  They didn't miss much by the time they got back.  People were getting rides on the elephants and they were selling more junk to people in the stands.

About a minute before the show ended, Dane had to go pee again.  I got up and started walking him towards the front and then the show was over.  It was probably a good thing we got up when we did because we beat two thirds of the crowd out the door.

It didn't take long for the kids to fall asleep in the vehicle on the way home.  I'm glad we went but I don't think I'll go to another circus for a long time.