Big Boys Club

During my son's intensive therapy today we were given advice on how to treat Dane more like a big boy and make him feel needed and appreciated.  The therapist recommended small chores and not to give him a question option of "Would you; Can you?"  Instead we have to get down, put our hands on his shoulders and calmly say to him, "Put on your shoes."  "Pick up your toys." etc...Try to make and hold eye contact as well.  She explained that once a parent masters control, all it takes is a look and the child will know what you want of them and they will stop in their tracks.

The therapist explained that my son is expressing a need for attention.  This can be both positive and negative.  Any form of expression you give either praise or anger gives the child some type of attention that the child wants.  You must remain calm and not accelerate their emotion.  Again, you must get down to their level and explain calmly what you want from the child.

She also gave us some explanation saying that telling Dane that he wants to be a big boy and help out like a big boy.  She called it the Big Boys Club.  She wants us to explain to him that when other kids are getting ready for class what other kids will think when he's not ready.  When he refuses to brush his teeth we have to explain that he doesn't want yellow teeth or cavities.  We have to push into his world and help him to grow up.  Children live in the present and we as parents teach them about yesterday and tomorrow.  We should not dwell on the past or worry about the future.  We need to live and connect with our children in the now. 

Working with a child and helping develop their fine motor skills is a skill a child doesn't loose.  Recently, Dane stopped zipping up his pants and coat.  He says he can't and it usually makes me give in to him and zip up or start for him.  The therapist told us that he's doing that for attention.

Tonight I kept giving him the "Your doing so good; You are a big boy; You are such a great helper."  Compliments.  I'm not sure but I think he could see right through it.  Getting his jacket zipped up didn't seem to take as long.  He said he can't.  I got it latched and said, "Okay, I helped, now you finish."  He zipped up and we spent the next several hours outside playing.

Another thing the therapist suggested was separating his sister from him.  She is attached at his hip when ever he is around.  I can see why he gets angry at her and hits her.  He wants time away from her.  We were recommended to get Dane into his room and play alone and have Ally do something else, away from her big brother.  Easier said then done is what I was thinking as she told me this.  It's worth a try.

I mentioned how washing his hair is like pulling teeth.  She suggested that it may be the tingling sensation he feels down the back of his neck while shampooing that makes him so restless and irritable.  She thinks that showering him may help stop that sensation.  

Getting the kids in the house and ready for bed Dane had lost a small bell that was in the guinea pig cage.  He freaked out.  Screamed and cried.  He opened up the cage and was digging through their bedding looking for that little bell.  He was a train wreck.  How can something like a small bell turn someone into a basket case?  I don't know.  Until he found that bell did he not feel like a total weight lifted off his shoulders.  I am so glad he found that bell or I would never hear the end of it.

Haircuts and Sensitivity

Who would have thought that having children that cutting their hair was like pulling teeth! Metaphorically speaking of course. Literally speaking though, cutting a kid's hair when they are autistic makes them feel like their being tortured.

We have not even tried to take my son to a hair salon because he would freak out most likely. We considered "Fantastic Sams" but we changed our mind quickly after our shopping experience at Walgreens. He threw a fit and didn't want to leave the store. He ran around the aisle and was hard to catch. This was because we wouldn't let him get a new toy. We are trying to teach him that we can't buy him something everywhere we go just so he behaves.

I cut my own hair to save some dollars. In the meantime I have cut my dads and my brothers. I cut my son's just so he doesn't take out his frustration on the person cutting his hair. I don't think they would be able to handle him squirming and screaming that his hair hurts. He cries and tells me "All done!" I keep telling him, "Your doing so well. We can take a short break." One side is done and it looks like crap so I want to finish it. He does get back in the chair and it is painful to watch and clip trying not to hurt him.

I don't understand what hurts him. Is it the pulling of the clippers? I cut slow and the blades are sharp so they glide gently. Is it the buzzing noise of the clippers? Is it too loud for him? Or both? Apparently hair can be as sensitive as biting into a mouthful of frozen ice cream.

Sensory Problems

Some things parents want to watch for in their developing child are sensory issues.  Someone doesn't have to be on the spectrum to have sensory disorders.  The signs are there, you just have to watch for them.

With my son he would cup his ears to block out certain noises and still does. A flushing toilet and blow dryer for example. He would become finicky when we were in noisy and crowded places like the mall or restaurant.

Dane would tantrum over starting the microwave, toaster, dryer, flushing the toilet, flipping the light switch, turning on the ceiling fan.  He is to this day obsessed with pin wheels and fans.

Food is also something with certain textures that some children cannot endure.  I don't think my son had much problem with that area. He wasn't much of a picky eater until recently.

Dane would pull at his shirt neck line because the tag was always scratching at him.  A small drop of water on his shirt would have him take it off.

Speech delay a definite sign.  Dane didn't start talking until he was 4.  He is going to be 6 this November and he is hard to understand at times.

One question that really made me upset was when Birth to 3 would question why I think he is smart.  Do you think Dane is smart?  Of course I did.  It was strange.  He was 2 and a half.  He didn't speak but he knew all the animal noises.  You would ask him what noise this animal made and he would hit the nail on the head.  He wasn't talking but he could count.  One time he counted to 20 with Birth to 3. Is he smart?  Hell yes he is.  It's amazing to see him think outside the box.  Sometimes I think he's way ahead of his time while other children are learning to plant a seed.  Dane will say now that the seed will open and grow into a flower.  Then you can take the flower and put it in Grandma's vase.

I remember during his screening for his speech and he was only using a 2-3 word vocabulary.  The picture of a ball.  I was expecting him to say "ball"  he said "beach ball"  I was shocked!  I didn't think he knew what a beach ball even was.  Crazy.

Danes therapist was playing a sensory game with him with beans out of a bean bag chair.  That is when he told her about the seed sprouting and growing into a flower.  Most children his age are still just playing around with the beans and not thinking about the science behind it.  When kids on the playground are busy playing, he is looking up in the sky figuring out what shapes the clouds look like.  He gets mad when he tries telling me and he's pointing and I don't know what he is pointing at.  Eventually I figure it out.

Disturbing Article

I had just read a small article on the internet about a woman and her service dog along with her autistic children going into a McDonald's restaurant.  The manager of that food chain walked up to the woman in the parking lot and punched her in the face.  This happened in Atlanta.

Apparently the manager became disturbed about the service dog inside the restaurant.  She was charged with battery, assault and disorderly conduct.  Along side, she lost her job.

As if this woman having a disability and has a service dog to accompany her while raising autistic twins isn't hard enough for her.  Did punching her in the face in the parking lot put the icing on the cake?  WTF is wrong with people?

With the Americans with Disabilities Act that woman had her right to bring the dog inside the place.

Now, I could understand if the dog made a big dookie on the floor and she had to clean it up.  I believe the article said that she was off-duty even.  Really?  Your not even on the clock and want to express your discontent for a customer by punching her in front of her kids.  What is this world coming to?

autism story emailed to me

This story is from an email I received about a boy with autism with an IQ of 170.  Greater that of Albert Einstein.  

Kristine Barnett won't soon forget the "most devastating day in the life" of her son.

Jacob, called "Jake," her then 3-year-old, had recently stopped talking and had been diagnosed with autism. One day, she dropped him off at a gymnastics class, and, when she returned to pick him up, Barnett, 36, says she found all the other students sitting in a circle, while Jake was curled up and cowering in a corner.

"It was the day I knew Jake would never do sports or be like other kids later in life," the day care provider and mother of four tells ParentDish. "My heart broke, thinking he would be trapped inside this forever and never be able to talk to us."

But today, 12-year-old Jake is studying electromagnetic physics at Indiana University-Purdue University Indianapolis and has an IQ of 170, higher than that of Albert Einstein. And he's astounding university professors by developing his own theory of relativity -- they're lining him up for a Ph.D research role, Barnett, of Noblesville, Ind., says.

When Jake was 8, he jumped from fifth grade to college after teaching himself all the high school math classes -- calculus, algebra, geometry and trigonometry -- in one week and testing at college-level mathematics, Barnett recalls.

Recently, the boy has embarked on his own expanded version of Einstein's theory of relativity. Barnett sent a video of his theory to the renowned Institute for Advanced Study near Princeton University.

She tells ParentDish she fears that because Jake "learns differently than traditional students," he will become bored with university-level courses and says she hopes "someone will take him on as an apprentice."

Barnett, married to Michael Barnett, a store manager for T-Mobile, says she drives her pre-teen son 50 minutes each way to the university. He calls her from his cell when it's time to pick him up at the end of the school day.

"We knew he was gifted, but we never realized to what a degree," she tells ParentDish.

Jake's classmates also marvel at the scrawny little kid in the front row of the calculus-based physics class he's taking this semester, the Indianapolis Star reports.

"When I first walked in and saw him, I thought, 'Oh, my God, I'm going to school with Doogie Howser,' " Wanda Anderson, a biochemistry major at IUPU, tells the newspaper.

Barnett says the journey has not been an easy one.

By the time Jake was 1 1/2, he was reciting the alphabet backwards and forwards and calculating the volume of his cereal box in his head, she tells ParentDish.

But soon after, at 18 months, she says he completely stopped talking and withdrew emotionally. A battery of physicians diagnosed him with autism, and later Asperger's syndrome.

Barnett says it was then that the family settled on a mission: "to help our son and to help other kids like him." The Barnetts held a small fundraiser in a friend's garage and founded MyJacobsPlace.com.

The Barnetts and MyJacobsPlace supporters have turned a dilapidated building into a recreation center, where children with autism and their families gather for movie nights, parent support groups, social gatherings and other events. The foundation has helped hundreds of families across Indiana and Ohio through its awareness and sports programs.

"We were so afraid Jake would be withdrawn from us forever, and so we set out to find out what was the spark that could light him up," Barnett recalls.

For Jake, that spark turned out to be astronomy. As a 3-year-old, Barnett says, he loved looking at books about stars, and so the family spent a lot of time at a nearby observatory and planetarium.

"He could teach himself to read, but couldn't answer a simple question like 'What did you do today?" she says. "But he loved the planetarium and astronomy, so I knew I had to figure out how to build on that. I called the university and practically begged a professor to let Jake audit a class and sit in the back. I was so afraid that he would lose himself in the autism. I was desperate."

That determination paid off.

So far, Jake is the only member of his immediate family to have these rare abilities, Barnett says.

"But my family and my husband's extended family all are quirky," she tells ParentDish. "My grandpa was an inventor and my sister was a child artistic prodigy, and everyone is entrepreneurial on my side of the family. We've never had normal desk jobs."

Looking ahead, Barnett says she doesn't know what the future holds for Jake, but she has learned some valuable lessons for other parents when it comes to focusing on "what your child can do, instead of what people tell you he can't."

"I'm thankful that Jake has become the person he is and feel that, for all children with autism, we need to find the place where there is a little spark inside them," Barnett says. "If we had listened to all the people that told us our son would always be in special ed, and would probably never escape the isolation of autism, how sad would that be?"

Road Safety - Boundaries

I am really trying to stress roadside safety to my son. He needs to stay off the road and watch for cars. I don't think he fully understands the dangers of oncoming traffic. I live in town where traffic should drive slow but some people drive by faster than they should.

He has training wheels on a 20" bike now and he wants to go on the road. I have a small driveway and it's not exciting enough for him to stay in it anymore. I tell him in short sentences like when he was little, "No Road!" That's the way Birth to 3 taught us to speak to him so he learned to talk. Sometimes he listens and sometimes not. He will go on the edge and creep out into the road. I really have to keep a close eye on him. I turned around for a split second and he ran out with his dump truck through the curb and gutter running through the dirty water and leaves.  I have set up orange cones at the end of the driveway to give him a visual of where he needs to stop. 

He wants to go for bike rides ever since the other weekend my nephews rode off without him. They are twice his age and he wants to be like the big boys. He gets very heartbroken and trying to tell him he's too little makes him angry. This is when I first took him on the road. I have his little sister in a bike trailer and pull her while I make him stay on the side of the road.

Tonight we rode up to the elementary school playground. I have to warn him several times about the intersection with Yield and Stop signs. I tell him to "Stop and Look both ways. Stay on the side." He's doing good at staying at the side as long as I'm with him.

We got to the playground and there were 3 other kids there with their father. Dane played around with the wood chips and threw them down the slide and played by the water puddles mostly. The other kids left and he tried to follow them on his bike. I had to scurry and get his sister in the trailer and catch up to him. I yelled at him to "Stop!" but it's like he just spaces me out.

When we got to the end of the street those kids were saying "Hi, Dane!" One of the girls was in his class. Dane waved hi back. The girl went on to say how he was invited to a birthday party. I didn't know what to do so we kept on riding. It's nice to know that other children want to include him.

We got home and he took a bubble bath. He jumped out before I got to wash his hair. He hates his hair being touched. I can wash it but it takes patience. He screams the whole time. I try and show him a picture of hair washing to let him know he needs his hair washed. Sometimes it works better then others. Hair cuts are no better.

Dane has therapy from 9-12 tomorrow. I have to take a day off work soon under Family Medical Leave (FML) because the therapists want me there also. I wonder if his weighted vest came in yet? The therapists ordered one a few weeks ago. A women in the area makes them. I hope that helps.  I am having a hard time understanding when to use it on him.  Is it all the time? During sensory breaks?  When?

Family Medical Leave (FML) for autism services

I took a personal day off from work tomorrow to meet with Danes therapists. I went into my employer's office and talked to Human Resources about taking Family Medical Leave for the following Thursday. After the doctors fill out the form I have up to 15 days to return it to the office or that day(s) will count against me.

Dane went on his first field trip and rode the big yellow bus to a local farm today. He had to wear rubber boots because of all the mud. The ground is sopping wet. He said that "Cows poop a lot." He's right.

I spent the remainder of the day trying to keep the kids entertained outside. I put training wheels on a 20" bike for Dane and put Ally in the bike trailer. I took the 3' wire fence down I used around my backyard that was supposed to contain them. They always ran around the front of the house or garage leaving me to chase them home from the neighbors yard. Dane was mostly over there for their pin wheels in their flower bed and Ally would follow.

I put the batteries back in their power wheels and they chased each other around the yard. The 90 year old lady was putting her garbage out and the kids ran over to her and said "hi." That left me to go talk to her. She's a nice old lady but she always tears up when I talk to her. She is very lonely and really wants someone to talk to.

After I got the fence rolled up I asked if the kids wanted to go for another bike ride. They both got into the bike trailer. I rode our way up to the park. When I say "rode" I mainly mean, walked. Having 2 kids weighing 90 lbs. combined pulling them behind you uphill is not easy work.

We arrived at the small park and they went on the merry-go-round. The ground was soaked and we didn't stay very long. After a small crying spell I got the kids ready to go home.

It was getting dark so the solar lights begin to come on. Dane got fixated on why some worked and some didn't. Some of them he had in the light yet and he started to hit them on the ground and yell. He took the old, broken pin wheel from the old lady's house. All that was left was the center and he spun it for some time.

I made the kids a turkey and cheese sandwich. Dane ate his. Ally ate half and gave me the rest. I don't like to waste food so I went to eat it. Gritty I thought. I opened up the sandwich and it was full of sand. She dropped it and gave it to me. No wonder why she didn't want it.

Dane got back on his bike and tried to ride in the road by himself. I ran out and told him to stay on the side. A car was coming and he did a quick turn around right in the middle of the car. It's a good thing I was there or something bad could have happened. I am trying to teach him to watch for cars and stay on the side of the road. I also don't want him on the road without me.

Every thing needs to be explained "why" he can't do things he does from what his therapists tell us. I really don't know how much he understands so I have to still use short sentences around him. Something like, "No road! Danger. Cars can hit you! It scares me that he thinks he can just do it and run off by himself. I always have to keep a close eye on him.

Jello Meltdown

Home at last from a long day in the factory. A long hard day wanting to get home to a beloved family and take a shower. Walking into a house with a sleeping wife and kids, life is good. Time to unwind.

I was lucky enough to grab the cold leftover pizza out of the fridge from the night before. I can't start the microwave because that will wake up Dane and he will scream half in his sleep. He wouldn't be happy until he stops the microwave and starts it again. That's all part of his routine. I got to tip toe around my house to not wake up the sleeping household. This should be my time to relax.

Nice. I got in a quick shower and the kids are still sleeping. What's this, Dane is waking up and want's Jello? "Okay, you can have some." I say quietly not to wake his little sister.

"I want jello too!" Screams Ally half in her sleep. Oh Sh*t, here we go. Remain calm. I'm beat and I hurt my arm today at my job. Can't I just sit down to a bit of peace and quiet? Just this once? Please? No.

Dane curls up on the floor, throws a sheet over his head with the jello and cries. "Want jello!" A meltdown over jello. He cries for the next 20 minutes. I can't talk him out of it or open the jello for him. He wants to but he won't get off the floor curled in a ball on top of the jello container. Now his sister is whining about jello too. I can feel my hair getting grayer.

Finally. Meltdown over. They have to work themselves out of it. Some are longer then others so this one was about mid-range. At least he didn't bang his head on the floor and try to hit his sister. That is something to be thankful for in the least.

Jello time. Some for you and some for you. Their both happy. Time to go outside, it's nice out. I will sit in the chair and watch the kids play. Not a chance. Now it's Ally's turn to raise hell. She doesn't want to get dressed and get her boots on. She screams, "I don't want it!" Great. Dane is done now it's her turn to make my life miserable. Why?

Now, I have no choice. Off to Grandpa's so they can run and play so my wife can rest up to work the graveyard shift. Their happy. Sweet. Now if they will only go to bed on time tonight so I can try to read my new book before I fall asleep before I finish the first chapter.

No Easy Explanation

I feel that you really need to tell an autistic child several times about something before it happens. I try to tell my son about leaving for work and he goes through a range of emotions.

He will ask, "I come to?" To tell him that he can't go gets him really sad. He cries and walks away. A while later we will tell him again that I have to leave and that I will be back later. This time he will get angry and stomp his feet and storms off crying.

This happened again at his grandparents house. Grandma was having a dinner award for her 40 years in the factory. Grandpa had to go with, and why not, it's a free meal. Telling him that Grandpa has to leave and he can't go set him off. Sadness, anger, agitation. It's very overwhelming. It leaves me stressed trying to make him understand that he will be back. Some things he just can't do with us or his grandparents.

The time came when Grandpa was leaving for the dinner party. He didn't take it so hard at the final moments of his leaving. What a relief. I thought he would go into a tantrum and we would have to deal with that for the next hour. Maybe it was worth telling him 5 times prior leaving to not deal with him screaming. I could have dealt without the tantrums the other 4 times however.

With therapy and hope, he will eventually be able to control his emotions from what his therapists tell me. Autism is not cured but it is treated. It is not easy dealing with situations that you have no control over. Once control is regained, the bitter sweetness of happy children who we love is upon us until the next fight or meltdown. Enjoy it while you can. With fingers crossed, it will get better with each passing day.

Ritalin

I was having a conversation with a co-worker of mine. We got on the subject of our children and how we like their teachers. I like my son's teachers very much. They really seem to care and work with his autism. During the school year he has had only 1 meltdown during class.

While the meltdown was in progress the teachers lead him out of the class into a sensory break. They applied a deep pressure massage and put headphones on him to listen to soft music. After about 10 minutes he was better and returned to class.

My co-worker explained to me that his son got a note sent home from his teacher. The note explained that his son wasn't doing his math and should be put on ritalin. That to me is not right. How can a teacher make you, the parent force upon a prescribed medication just so it makes her job teaching easier? Needless to say, he was upset and had quite the talk with the teacher and the principal.

I will never medicate my kids. I will fight the school system or pull my child out before that ever happens. To me, medications at a young age only ads up to a long term drug addiction. Not to mention withdrawal. Kids are energetic. Let them run and play. I will not turn my child into a zombie.

My brother-in-law has ADHD and was put on ritalin at a young age. That escalated to depression and he had to be put on anti-depressants. From that, he can't sleep and he's on medication for that. He has nightmares all the time. I do not believe a pill is worth the long term affects.

You see commercials to stop smoking. Here, take this pill. May cause suicidal thoughts, restless sleep, panic attacks, increased heart rate, etc. One pill and you get the side affects, in which, here's another pill for that and another and another. Not worth the risk.

Ritalin is a drug. No teacher has the right to make you do something to your child you are not comfortable with. If you want to control your child, get them involved with something that interests them for the sake of their happiness.

With my sons autism, he can't watch the teacher and learn. He has to spin wheels on a matchbox car while she teaches. That's how he learns. All kids are different in how they learn. Will I get a note from my sons teachers saying he's not paying attention in class? Teachers need to understand that some kids need to be taught differently than others. Isn't that why they become teachers in the first place?