Sunday, January 31, 2010

Day 26- Short Funnies

Throughout the year I will collect small stories that happen each day. They are too small to place into a seperate blog, but once I collect a few I will publish them. These have been for the month of January. Mainly within the last week. I am trying hard to remember the stories, but it's been hard. I think I have found a system and will have more for you next month!!!!

One afternoon in the car out of the blue...

"Mom, I think Cindy wants to be my girlfriend."

"Tanner, what makes you think that?"

"Because she says I am funny, smart and cute. And don't you say I am cute!"

"Tanner, I think Cindy is right, you are funny, smart and cute."

*Rolleyes* "Women."


Older brother working on finishing his homework...midway through first grade....

"Mom, how do you spell penguin?"

While Mom is trying to make sure she tells him right she hears out of Tanner's mouth....


Sitting in the living room watching Tv. Progressive commercial comes on. (The one with Flo the saleswoman who is so perky)

Tanner says, "Mom, when those executives for Progressive get together for a meeting, I sure hope they fire her."

Mom wondering how he understands the concept of 'executives firing someone", inquires, "Tanner why would they fire her?"

"Because she is so annoying."

Watching the Nutri System commercial....

"Hey Mom if you eat that healthy food your body will get skinnier."

"Tanner, do you think Mom's body needs to be skinnier?"

"Sure wouldn't hurt you any to loose all that fat."

Friday, January 29, 2010

Day 25- Trapped in the House... Need to Get Out

We have been snowed inside our house for two days now. School has been canceled for two days. The last time I remember school being out that long for snow was in 1987. Yes that's right, 1987. So, take two days of no school and add two days of the weekend and you have one crazy Momma!!!!!

We have passed the time by playing the Wii, watching hours and hours of Disney Channel and Nickelodeon, baking, playing games and just simply driving each other nuts!

Late this afternoon we decided to try to go sledding. The boys had attempted to do it this morning, but Daddy's car was stuck and they couldn't get it out. So, after nap time we decided the entire family would try to take Mom's van out and go sledding!

I didn't realize we would be in for such an adventure!

Tanner is really good at back seat driving. Mom says he gets it from Dad and Dad says he gets it from Mom.

Dad had spent thirty minutes shoveling the driveway. We had 12 inches of snow in our backyard (not counting the drifts), so having a north facing driveway this was quite a feat. We also have a rear entry garage, so this meant we had to brave the alley to get out.

We piled into the van. All five of us! Trey wasn't quite sure why we had stuffed him in all those clothes and he was in obvious discomfort sitting in his car seat, but in the back I hear, "Hey Trey, you are going to have so much fun sledding!"

On the way, the snow is piled everywhere. We drive down the road and we hear "Hey Dad! Be careful! Don't pass that car. You are going to fast. Dad, you are going to lose control of the car. Be careful, Dad."

Ok, that's it, we are implementing a no talking policy in the car! Once that happens, I hear... "I'm not talking, I'm singing."

Oh Boy! Are we sure we needed to get out?!?!?!

The roads are nasty and it does take us a while to get to the park, but getting there is priceless for the boys!

They pile out of the car before we can get Trey untrapped from his car seat and are gone! We look around to see Tanner flying down the hill on his sled!

He is laughing and enjoying himself! After being cooped up in the house for two days he is out and loving it!

Down the hill for about ten minutes and Trey is getting cold, so I load him up and turn the car on for heat. This is quickly followed by Austin who can't feel his hands.

But not Tanner. This kid stays out there with Dad for over thirty minutes! He is having so much fun gliding down the hill and traveling back up. I can see him going up and down the hill and really quickly notice that he is red in the face and covered head to toe with snow all over his body. This kid has got to be freezing!!!

As the time goes by he ends up spending 45 minutes sledding down a hill. I think he likes it.

Zach has to bring him to the car crying because he doesn't want to go home.

On the way home once again we hear, "Hey Dad! Be careful! Don't pass that car. You are going to fast. Dad, you are going to lose control of the car. Be careful, Dad." Got it Tanner, Dad's being careful.

When we pull into the alley, it's slow and steady the entire way down. Then we get to our driveway. Dad has only shoveled off the half that the car needs to come out of and with an inch of ice underneath the snow it's still pretty slippery. We struggle to get up the small embankment. Back and forth we rock trying to get into the garage. All of a sudden we hear in the back, "Hey Dad, why don't you try to back up and just gun it?"

Gun it? Where did that come from?

Giving it one more try before we pile the family out and try to push the car into the garage, Zach backs up about fifteen feet in the alley and guns it! As we travel up, we have the feeling that this one is going to make it! And what do we hear in the back....

"Go Dad, Go Dad, Go Dad, Go Dad." Tanner is cheering Dad on!

As we begin to drive into the garage we hear. "YEAH DAD!" Tanner is the back seat clapping and cheering because we made it!

For us the simple things in life often go by without being noticed. But for Tanner, something as simple as getting into a garage on a snowy day can be turned into an experience he will never forget.

I guarantee, this child will be talking about the day we went sledding and almost got stuck in the alley for a long time!

Wednesday, January 27, 2010

Day 24- Developed Relationships

Tanner came home today with a "Diary of a Wimpy Kid" book. He told me that he had to read twenty pages of it tonight for homework. Not a big deal in our house, he does that a lot. He enjoys reading and thrives on being challenged by higher level books. (This particular book is a fifth grade level book.)

When Austin found out that he had checked out this book from the library I hear, "HEY THERE'S A WAITING LIST FOR THAT! HOW DID YOU GET IT SO SOON?"

Tanner's answer, "Mrs. Librarian loves me. She lets me have any book I want."

"NO FAIR!" screamed Austin.

I told Austin I was sorry, but that he and Mrs. Librarian were really good friends and he probably asked nicely for it and she gave it to him.

Little did I know, she had SAVED the book for him.

The librarian lets Tanner go help her as a reward. She, along with a few other adults at school, have taken a vested interest in helping him succeed. They treat him with respect, understand that he has different needs, they get his sense of humor (even when Mom and Dad don't) and they love to see him everyday. And the feeling is mutual. He adores them!

We are facing a huge snowstorm tonight. I asked him if he wants to get an extra day off from school or if he wants the snow to go away. He told me he would like to play in the snow, but would miss everyone at school if he had an extra day off.

And I am sure they would all miss him too.

Day 23- Kindergarten Part 3

When we got Tanner home he knew we were upset. He cried for what seemed like hours. It wasn't that he knew he was going to get into trouble, he was crying because to him it wasn't fair.

His story was simple. There was a little girl in his PE class who had a headband on. They were sitting in line and she had taken that headband off and was tapping him on the shoulders with it.

"Mom, it was bothering me."

We had been working with him on letting the teachers know when something was bothering him so he could be removed from that situation, so using his words, he got up out of line and went to tell the teacher that he was being bothered by this girl. The teacher simply told him to stop tattling and get back into line. At that point, left with no choice to get out of the situation he walked back to his spot on the floor.

I have often imagined what he looked like on that walk back to his spot. His shoulders slumped over, head hung down, sad look in his eyes, a feeling of failure because in his smart little mind he knew what was coming next. He knew that his little body had taken as much over stimulation as it could and that he had no other outlets to let out his frustration.

To this day, every time I think about the next words that came out of his mouth, I weep.

"I got back in my spot and she started poking me again." Sobbing uncontrollably, he goes on, "I just couldn't take it anymore, I had to get her to stop. Dad I know you tell me not to hit girls, but she wouldn't leave me alone. What was I suppose to do?"

He had no control over how that small little headband hitting his body felt. For a neuro-typical person it's not a good feeling. But for someone whose body feels so different, he had taken all he could stand of that plastic headband tapping into his senses. And the only way he knew how to get her to quit was to punch her in the stomach until someone stopped him.

I wept for days not knowing what to do. The first thing I did was talk to a dear friend of ours whose son has Sensory Integration Disorder (SI). It seemed like Tanner was getting over stimulated and that was causing his anger, rage and uncontrollable crying. They had taken their son to a couple of places in town and had even gone to Denver the SI mecca. She gave me three books to read and also told me to call a therapy place here in town to get him evaluated and to call a local child psychiatrist. I called both that day to get him in as soon as possible.

This was in the beginning of May and the fastest appointment the therapy place had was on May 29th. The last day of school... I told them we would be there. This was too important to miss.

And with that our new journey began.

No Matter What...

Monday, January 25, 2010

Day 22- Thankfulness

In the 22 short days that I have been writing this blog I have already had a stream of compliments, requests, and concerns for family and friends that don't have answers. While I am extremely appreciative of the compliments, the concerns are what move me the most.

I am by no means an expert in the ASD field. I am, however, a mother, who knew deep inside that there was something more severely wrong with my child than him 'just being a boy' or a 'discipline problem' or a 'spoiled brat.' I knew we had tried everything from disciplinary procedures to reward systems. I knew that he didn't simply 'just need to be spanked every once in a while.' When people come to me to ask questions the first thing I hope they understand is that my heart breaks for them. If they are asking then I know they have that feeling too. The feeling that something is not quite right. They are scared, anxious, hopeful and above all concerned that this is something bigger than they know how to handle.

The first thing I offer is a phone number. My phone number. If they need any advice on where to go, what to do, or just simply need a shoulder to cry on, I am there. I have been in their situation, felt that feeling. It nags at you from down in the bottom of your heart. It makes you sick to your stomach. I want everyone that could possibly be in this situation to know that I am available 24 hours a day, seven days a week.

After that, I carefully try to answer the questions they ask to the best of my knowledge. If they are in my town I can offer places to go, people to talk to, support groups to join. I repeat over and over that I am NOT AN EXPERT, just simply a Mom. But I also believe that Mom's intuition is greater than any expert saying 'this is typical, he'll grow out of it.'

If you are reading this and have had questions that you are afraid to ask, please don't hesitate. If you know of someone who will benefit from this blog, feel free to share it. My goal is to raise awareness. A short goal has been met, but I want to change the way this world views ASD's.

I apologize that it has taken me so many days to write out our story. This has been extremely hard for me to relive and for me to make sure I didn't leave anything out. From the time he was born until this very day, there is so much to share. I only hope that I will be able to get all of it in before the year is up.

Thank you to everyone who takes time out of their day to read this blog.

Sunday, January 24, 2010

Day 21- Kindergarten Part 2

We made it through Christmas with no big problems. But when we got back to school things seemed to really change. I was up at the school three times a week most of the time. His problems seemed to be starting in PE or Music, but would continue in the classroom. As a parent I was at my breaking point of not knowing what to do. I am sure the school was the same way.

We started a behavior chart for him and it worked for a couple of weeks, then we were right back to square one. The disciplinary principal was trying all sorts of rewards. He would get to go to the office everyday and pick out a candy, then at the end of the week if he had so many good days he would get a free movie pass (one of his favorite things to do). But each reward we tried only lasted for a little bit.

He continued to see the psychologist who prescribed Concerta for him. We were hoping to take away the depression and keep the behavior under control. It did the exact opposite. His teacher said from the time he walked in the classroom until about 10:00am in the morning (approximately two hours) he would just sit like a zombie, no expression whatsoever. Then about 10 he would liven up a bit and spend the rest of the day unable to control his behavior.

This went on for a few months. None of us knew what to do, but nothing we were doing was working. I was going to bed every night crying. I didn't know what to do with him. I felt so alone.

He was getting in trouble in PE and the punishment is to do jumping jacks. T his is when his huge blow ups would happen. It seemed as though it was an act of defiance, but I finally asked him why he wouldn't do the jumping jacks and he said the other kids laughed at him when he did them. He was insecure. So we talked to the PE teacher and tried to get her to change the choice of punishment. She refused to do so unless we had something in writing.

Then in May we had a huge blowup. I got a call from the school that he had beaten up a little girl in his PE class. I drove up to the school in tears. What had gone so wrong that he felt the need to hurt another student in his class, let alone a little girl?

I got up to the school and Tanner could see that I had been crying. He immediately started crying too. He knew he had made me sad and that was the last thing he wanted to do.

The story from the teachers... For absolutely no reason whatsoever Tanner had waylaid (actually word used by the teacher) on a little girl that never does anything wrong. To the point that she was in the nurse's office when I got there. His PE teacher went on and on about how this little girl never gets into trouble and she always does what she is asked and there was no possible reason that Tanner should have waylaid on her like that. The PE teacher was extremely concerned that Tanner owed her some jumping jacks for the incident and wanted to make sure that he was going to give them to her. I was too distressed at that point in time to say anything.

They asked that I take him home for the day. This was the first time all year he got sent home. So we discussed what punishments he would have when he got back to school, made sure he understood them and I took him home. He didn't have any emotion the whole way home. He knew what he needed to do when he got home, he went straight to his bedroom. After we gathered our wits and I explained everything they had told me to my husband, we then went into Tanner's room to talk to him about the incident.

His account of the incident changed our entire outlook on his situation and it was then that we realized he had no control over his behavior....

Saturday, January 23, 2010

Day 20- Kindergarten Part 1

Kindergarten was by far the worst year we have had with Tanner. I am not sure why the year was so hard. He did have a lot of changes right before he started school so I am sure that had something to do with it.

His older brother took five days to be in the principal's office when he started school. It took Tanner three. I got my first call and knew it was going to be a year. After about three weeks, I was in the office talking about the track we were on and he was headed to DAEP (Disciplinary Alternative Education Program). That's when we took serious action.

The first thing I did was call our pediatrician for an appointment. He put Tanner on Adderall (which was the same medication his older brother was on at the time). That worked for a while, but then we decided to up the dose to get a little more control out of it and that sent him into a frenzy.

Severe depression, a five year old who cried on the smallest things. I remember one time we were sitting at supper eating hotdogs and his fell apart. He sobbed uncontrollably for several minutes. I finally had to make him a new dog for him to calm down and eat. Kids were making fun of him as school for crying and unable to control his anger at them, he started beating them up. Most of his incidents were happening during the PE or Music period and we could not figure out why?

We started seeing a psychologist who worked with his pediatrician to help find a medication for him. The doctors believed it was ADHD just like his older brother. I told everyone that's what it was, but deep down inside I knew we weren't getting any better. There were too many factors that weren't adding up. I was just so overwhelmed, I didn't know where to go.

In November, we seemed to have things lined out again. His teacher and I were in constant communication to make sure that days went smoothly. And I was beginning to see the light at the end of the tunnel.

Then came Christmas....

Tuesday, January 19, 2010

Day 19- Photographic Memory

I was quickly reminded this morning that one of Tanner's strengths is his photographic memory.

When I dropped him off at school he could not find his book in his backpack. He told me he had given it to me in the car on Thursday and it was still there. I didn't believe him, but escorted him back to the car to look for it. We searched in the back where he sits and couldn't find it. So, we went back into school. His teacher asked him to look in a couple of places that it could possibly be. The entire time, I could see the look on his face, he knew what he had done with it. He knew that on Thursday, on the way to the concert, he had indeed given me the book.

After about five minutes of looking in the classroom his teacher offered him a solution for the day. Mom would look for it as soon as she got home and for that day he would read another book. Ok, all is well.

Mom when back to the car and thought of one more place that she might have put it when he showed it to me.

BINGO! There it was in the middle of my bible study book bag. I ran back into the school to give it to him. And got another one of his strengths.

pure honesty...

"MOM! I told you I gave it to you in the car on the way to the concert!"

Monday, January 18, 2010

Day 18- Simple Things Cause Meltdowns

Tonight was time for us to cut finger nails. Let's face it, no one likes it. But for us, it's World War III.

I have tried several different ways of handling it and I have yet to find something that works. We always end up with my legs wrapped around him holding him down trying to cut his fingers with the clippers. I try every time to explain to him if he would just be still it wouldn't hurt.

Why does it hurt?

Because he kicks and screams and throws a fit! I feel like he hurts himself more with the anxiety of it all. If he would sit down let me take care of it, like I do all of his brothers, then it would be over and he could move on.

I just would much rather them grow out long and break off. But I know I can't do that. I do however let them get a little longer than I would like, just to avoid the emotional drama of it all.

I know it's a sensory issue. He is crawling out of his skin to get away from the feeling of the clippers. Just like he can't stand the vacuum sound or getting his hair cut.

Sensory issues.... we all have them... but ours cause meltdowns.

Sunday, January 17, 2010

Day 17- Soocer Weekend

We had soccer for Tanner all weekend. He plays soft soccer, indoor soccer with a nerf ball. This will be the last year he can play and I am not sure he can handle 'real soccer.' Running around on a basketball court is a little different than running around a full length soccer field.

His first game was interesting. We have had two practices, but for six year olds there really isn't a whole lot to practice. So we are lined up to get warmed up before the game and a couple of boys are messing around. Normally, he is in the middle of it, but today I hear, "Guys, you gotta settle down or somebody is going to get hurt," coming out of his mouth. I took a second glance look to make sure that came out of his mouth? My son? Talking about safety? Not my son?

The game starts off great. He is running around kicking the ball trying to participate, but about halfway through the game we notice he is trying to slide on purpose. That is a huge no-no in this league. We have spent three years trying to get him to understand this, but every year he spends quite a bit of time on the floor. The ref warns the kids in general, but Tanner continues. We made it through the game ok, but I am worried that he won't remember he can't slide and eventually he will get 'ejected' from the game.

Today he had his second game. There was a little more pushing and shoving and I can tell he is getting worked up. I always worry that one child who pushes him over the edge will get tripped or pushed down. I am constantly watching his face to see how he is responding to the aggressiveness of the game. He at one point today looked like he was out for revenge. He got tripped and skinned his knee. He seemed not to even realize at first, but when he saw the blood his face got red and he started pointing at the kid that had tripped him. Luckily, the coach pulled him out to rest for the remainder of the game. She saved me a huge embarrassment in trying to explain once again why he does what he does.

He is not a bad kid, just needs help remembering what's appropriate behavior.

It was a good weekend I would say. He is having a great time! He is learning the names of the boys on his team and seems to be enjoying the game.

Three more weekends to get through! We can do this! He will love it!

Day 16-The First Five Years

I decided today that two weeks into this I might need to start giving you a background into how we figured out what was going on.

When he was little he was an extreme behavior problem. He started out getting 'kicked out' of two different day cares. He was kicking, hitting, biting the little kids at an early age. We had moderate control over him at home and didn't see the same behavior they saw, so we simply had no answers.

He was, however, developmentally on track. He rolled over, crawled, walked and talked at appropriate ages. There was never any cause for concern. The child had more vocabulary than his brother at an early age and was very inquisitive. The only developmental problem we had was potty training. He was extremely stubborn as boys tend to be, so we didn't worry about it to much.

When he was three we placed him in a Montessori school. Hoping that they would have the structure that he needed. We knew he was a routine child who thrived on knowing what was going to happen everyday. For the first few months he was ok. Not to many problems. But spring of his first year is when we started seeing problems again.

We kept thinking changes in his life were causing this. Mom's job changed, change in houses. We weren't real sure. We tried different methods of discipline. Spanking didn't work, time outs didn't work, taking privileges away from him didn't work. He simply didn't care that we were doing all of this?

We spent two years in Montessori trying different reward systems and different punishments. The school worked hard with us trying different systems that we asked, suggesting things to do. Although he was excelling academically, he simply was having behavioral issues that were uncontrollable.

The second year of Montessori, I became pregnant with our third child. During that pregnancy I became extremely ill. I spent several weeks on bed rest. This sent him over the edge. What we thought had been rock bottom was no where near. He was being sent home two to three times a week for throwing chairs, kicking teachers, running away from teachers. We were at our end. Had no idea what to do!

We had several things going on at that time, so we were simply trying to get through one day at a time, not thinking that there is anything wrong. He was just having a difficult time with the upcoming birth of a baby in the family, his great-grandmother that he loved and adored dearly was sick and he couldn't understand what was going on. That's all. He will be fine once we get through all of this. We kept telling ourselves over and over again. He would be fine.

July of 2008 his little life changed forever. His great-grandmother passed away after a short but grueling illness. He lost his weekends away from Dad and Mom. To this day, I am not sure exactly what all he got to do when he was at her house. She always told him to keep it a secret, but I get bits and pieces and they include, staying up as late as he wanted, getting up and going to get doughnuts in his pajamas, eating the exact kind of pizza he wanted, going to McDonald's to get happy meals, coloring all day long, watching what movies he wanted. The list goes on and on. He looked forward to going to her house because he knew she loved him no matter what and would give him whatever he wanted. This was a safe place for him to go and have the time of his life.

Ten days after he attended her funeral, his life changed again. He was now no longer 'the baby' of the family. His little brother came into this world whether he was ready for him or not.

This child had a rough first part of 2008.

His life had changed in ways that no one could imagine.

And in August 2008 it changed once more.

He started Kindergarten.....

Friday, January 15, 2010

Day 15- Soccer

We start playing soccer tomorrow! This will be his third season and his last. We play an indoor soft soccer and they only allow up to 1st grade to play it. He is very excited and can't wait!

We have only been to one practice. They practice on Thursday nights and if you read yesterday's blog you will see that we were at a concert on Thursday night. This presented a HUGE problem with him. Being a routine child and very knowledgeable on what his routine is, he knew that he had soccer practice last night. He was extremely upset that he was missing practice. I get the feeling he feels like he will miss something extremely important, but I could be wrong and he could just simply want to go to soccer practice and play. I assured him that I called his coach and she said it was ok to miss. I also assured him that I had all the information he needed to play in Saturday's game.

I am thankful that this season is only four weeks long. By the time we get into the swing of it, it will be over! He enjoys playing soccer, but are not sure where he gets it? It could be a need to be different from his older brother or it could just be that he likes to run. In any case, he is a decent soccer player and loves to participate.

Mom and Dad are just happy that he wants to be around other kids!

Day 14- Concert

We went a concert last night. Drove two hours one way to see the band Kutless. This is one of our favorite bands. This time Mom came prepared! I had a headset for him to wear!

We had an awesome time. Concerts for us are fun, but physically draining for myself. He wants to go, but the noise is often to loud for him. So, I end up holding him the entire time. It's not that bad, but he does weigh fifty pounds. I have to be organized enough to wear cloths that can be pulled on (usually a t-shirt), carry very little into the concert and be rested enough to hold him.

It's a workout to hold him the whole time, but very rewarding. I have the opportunity to 'catch' him singing. When he thinks no one is looking he will sing along with the songs that he knows. It takes him less than one line to figure out if he knows the song or not. Once he figures out his eyes light up and he says, "Mom, this song is on K Lub!" (KLOVE)

They have a new album out that is a worship album. One of my favorite songs is "That's What Faith Can Do."

"I’ve seen dreams that move the mountains, Hope that doesn’t ever end, Even when the sky is falling, I’ve seen miracles just happen, Silent prayers get answered, Broken hearts become brand new, That’s what faith can do"

The chorus is so moving to me. No matter how far the sky has fallen in the past year, we have never given up hope. I know that there will be new dreams built and they will move mountains that I didn't even see coming.

And I can't wait!

Wednesday, January 13, 2010

Day 13- Routine

Routine is extremely important in our house. We have to set out our schedule everyday and a slight deviation from that can cause an outburst. That was made very apparent tonight as we prepared for bed.

Tomorrow we are heading to a town a couple of hours away for a concert. The boys have been looking forward to it since we bought tickets. But in the routine, he knew he was suppose to have soccer practice tomorrow night. When I told him that he would be missing soccer practice for the concert I thought I was going to have to pull him off the ceiling! He started screaming, waking up his youngest brother and fell onto his bed crying it took me about 20 minutes to calm him down. He is refusing to go to the concert right now because he has soccer practice. No amount of assurance that I have talked to the coach and it's ok for him to miss will change his mind.

Right now, I am just praying that we can get to the concert and have a great time. He LOVES going to concerts. I know if we can get over this bump he will have a fabulous time!

Look forward to writing tomorrow about this concert.

Tuesday, January 12, 2010

Day 12- Rubber Shirts

We sent him to school today in a rubber shirt. When I told him last night he needed to wear one to school he lit up. His bright blue eyes smiled at me as he jumped up and down screaming "MY FAVORITE!"

We have decided that we are going to try to keep him in the rubber shirts as much as possible, so I went and bought five more. The cool thing about these shirts is he can wear them under another shirt. So he can be stylish and comfortable in his own skin at the same time!

When I showed them to him tonight, he said I was the best mom in the world. That made my day. He asked if he can wear them to school everyday! So, I am hoping we are on the right track.

I need to go back and do some more research on why the compression is comforting to him so I can fully explain it to you all. But for now, I will settle with being the best mom in the world!

Better get started on the mp3 player!

Monday, January 11, 2010

Day 11- Therapy School

We started Tanner in therapy at the beginning of last summer. We were having a difficult time learning what situations caused him to over stimulate so we decided about the middle of the summer to put him in intensive therapy school for the rest of the summer. He went to school three days a week for four hours a day. During that time he was exposed to a variety of over stimulating situations.

About two weeks into school we starting getting our answers.

I went to pick him up one day and they asked me to come in for a few minutes. He had been asked to complete a task that he thought was boring. So he refused to do it. After a back and forth "yes you will, no I won't" he exploded. In an angry rage he started throwing chairs in the principal's office, ripping up paper on the principal's desk and when the principal tried to calm him down he spit in her face. It's so hard to describe the looks that he gets when he is in a rage. His face gets red, he grits his teeth, straightens his arms down by his side and squeezes his hands in fists towards the ground.

This was their first real experience with his anger and rage. And I often wonder how surprised they were to see it. They on that day were able to realize for the past three years the hopelessness we had felt, not knowing what to do. They also knew he was in the right place and we as parents were more than ready to start helping him.

After it was over, we sat down and analyzed what happened. Why did it happen? What set him off? What can we do next time to help him? How can we avoid this situation and still get him to take care of his responsibilities?

I think for me this was the first time in a LONG time I felt relief. These were experts, they knew the questions to ask us and him to figure out exactly what was going on in his mind. They had just then seen what caused him to come unglued and knew what we could do to help him. They knew just how smart he was and they believed that he was a great child. He just had sensory and social issues that we needed to work on.

So, now for about six months, we have worked hard on those issues. We have made tremendous progress, but I continue to realize that there will be mountains and valleys.

Right now we are in a valley, but with the communication we have between us, the school and therapy, I believe this valley will be small and soon we will be back on top of the mountain, focusing on his strengths and pushing in the back of our minds, the weaknesses.

Sunday, January 10, 2010

Day 10- The Aftermath

I was very thankful today that we had a five hour drive home. It gave me plenty of time to reflect on what could have been handled better yesterday. All the boys slept like babies last night and Mom tossed and turned, crying, wishing she knew what she could have done better. So today, all emotions aside, my mother and I discussed things we need to do for next time. First of all, next time won't be anytime soon.

We came up with a couple of ideas that I want to share with you.

1. Music.... He loves music, on his own terms. So why not get him an mp3 player that has his choice of songs on it? He likes songs by Chris Tomlin, Audio Adrenaline, Trans Siberian orchestra. So we need to put together a playlist that has soothing songs we know he won't sing to.

2. Compression... I haven't had a chance to discuss this in detail, but autistic children tend to like deep compression. This comes in the form of deep hugs, massages and even clothing that is tight. We like Under Armour shirts. He calls them his rubber shirts. They give him a compression feeling with a little bit of style in them. I let him wear them whenever he wants, but failed to realize I need to take one on the trip. I have to wonder now that if he had on one of those shirts during the wedding if he would have been a little bit more calm.

I am still doing research on the compression feeling for autistic children, so expect to see more about this throughout the year. I don't quite understand the scientific explanation that they give, but I have seen the results. He loves to wear them. There is bulky vest that he can wear during therapy if he wants, but as of now he has chosen not to wear the vest during school. However, he LOVES LOVES LOVES the rubber shirts.

It looks like I have some shopping to do this week.

Saturday, January 9, 2010

Day 9- The Wedding

We have traveled about five hours today. We are welcoming in a new family member by way of a wedding. This weekend was meant to be a quit trip down and a quick trip back, but instead it's a painful reminder that my children cannot attend the social functions that I want them to attend. We are not a normal family with well behaved children. And although I want to be around for social functions, sometimes that is just not a reality for us.

I haven't cried this much since he was diagnosed. The emotions were so overwhelming for me that I have just cried and cried, until my face was red, my throat hurt and my eyes were blood shot. I am still not fully recovered physically from the crying.

I should have seen all of the warning signs when we made it to the hotel. From the second we entered the room, he absolutely was unable to control his body. He jumped on the beds, he ran around the hallways, he slammed the doors to the room and he yelled at the top of his lungs. Wow! I was embarrassed at his behavior and I didn't even know the people in the rooms around us!

We went and ate supper and he had a hard time.

He jumped on the bed on top of the clothes I was suppose to wear to the wedding, with his shoes on!

There was not one bone in his body that could be contained into behaving.

The wedding was at a beautiful older hotel that had been remodeled so it could hold weddings. Gorgeous! I was at awe at the beauty that was before us. But it was only meant to last for a few seconds. The minute we got to the lobby to where we were suppose to go in, he became unruly again. He ran back and forth in the lobby looking for familiar faces to play with. He began making 'autistic sounds'. Moaning at the top of his lungs. The wedding wasn't even overstimulating at this point. We had soft piano music as background noise and everyone was reverent as the talking and mingled about. But not MY CHILD!

Did I mention he was moaning at the top of his lungs?

We chose our seats, not to close, but not to far away and definitely on the aisle for an easy escape. My oldest child sits with my mother, my youngest with my brother and my middle one is on my lap.

Did I mention he was moaning at the top of his lungs?

This was about 20 minutes before the wedding. I took him out into the lobby to calm down. I found a dark corner, one that we could sit down in and I could just hold him. He started moaning louder.

With that I lost it. I couldn't do anything but hold him tight and cry. He immediately stopped and looked at me. He laughed at me. Thought it was so funny that I was crying. I couldn't do anything but sit there and cry. For a moment in time I became a emotional wreck who couldn't stand anymore starring, couldn't believe that this was happening to me.

WHY GOD! WHY DID YOU GIVE ME THIS CHILD? Did you honestly think that someone like me could handle someone as powerful as him? What am I suppose to do to help him?

After about 15 seconds he realized that my crying was indeed real and he stopped laughing. It was then that he looked at me and said, "Mom, you look mad at me?"

"No sweetheart, I am not mad."

"Then why are you crying?"

"I am crying because I am embarrassed that you are making those noises. Don't you see everyone looking at us? I don't understand how to get you to stop making those noises?"

"Mom, you know I hate weddings."

"No, I didn't know you hate weddings, in the six years you have been alive we have been to two other weddings and you weren't old enough to tell me you hated them."

"Well, I do hate them."

"Ok, why do you hate them?"

"It's to loud."

"I don't understand, you like going to the movies?"

"I just don't like the music at the weddings."

"Well, honey, it's not about us liking the music. This is one of the most special days for the bride and groom. This is THEIR day, they pick everything that happens at their wedding. They are the ones who like the music and it doesn't matter what we think."

"They should really consult us on their choice of music." (Yes, my six year old used the word consult.)

"Wanna go sit back down?"


We sat back down. Throughout the ceremony he sat semi still. After the day we had been having, he definitely was better during the ceremony than I had predicted he was going to be.

But then came the reception. It up in a mezzanine section of the hotel in the ballroom. They had light music and a 'desert bar'. I really try hard to limit the amount of desert my children get and I simply thought they had to much today. So I told them no. For the older child that was ok. But for the middle one it was enough to set him in a frenzy.

I had enough! We were headed back to the hotel. I was emotionally drained from being frustrated, upset, embarrassed by his behavior today. He refused to help me get his body in check and comfortable. I had done everything I could to make his life a little bit more secure and he was beating me down to the ground. I couldn't take one more second of his moaning.

I found all three of my children and brought them back to the hotel. The entire drive I cried and cried and cried. I told the boys that I was not mad at them, but was simply upset and tired of the behavior and I wanted to get out of there so I wouldn't be embarrassed anymore.

When we got back to the hotel, I got the baby ready for bed and laid him down. Then I sat the older two down and we had a talk. My middle boy was glad that I had stopped crying and wanted to know again if I was mad. I told him I wasn't mad. I was extremely sad and embarrassed at the way he had acted. I told them it was bed time and we were going to wake up tomorrow and start a new day.

He asked to see 'the ring'. The ring he is referring to is my husband's wedding ring. I had "No Matter What" engraved in the ring when we got married and we have shown it to our middle son. We want him to constantly know that we have unconditional love for him. "No matter what" he does we will always be by his side.

As I sit here crying again from reliving these moments through the blog, I can't help but remember what a dear friend of mine said to me when we found out about his Asperger's.

"He is NOT yours, he is God's."

Days like today, I need to be reminded of that. This precious life that was given to me here on earth belongs to God. And his plan is greater than I could ever imagine.

No matter what, I will be here for these children.

Friday, January 8, 2010

Day 8- Situation at School

One of our biggest obstacles with our son is over stimulation. That seems to be when we have the worst problem with his behavior. His compensation for over stimulation is to act out. This has taken as a LONG time to realize and I even still have problems with identifying it sometimes.

For the past two days the weather has been so cold here that they have had lunch recess indoors. Our lunch recess is a unique situation this year. His older brother goes to lunch 3 minutes before he does, so they basically share a lunch recess. This has helped the younger boy in that he always has a friend to play with, but it has possibly hindered the older boy in that he always has a brother tagging along thinking he is cool. So far it hasn't been to big of a problem, until this week.

When they have lunch recess they go into a gym that PE classes are held in. It's only for about ten minutes, but there are anywhere from 50-75 kids in this gym at one time. That gym gets really loud! Asperger's children do not like loud noises.

He has had trouble following the rules in the gym for the past two days. Today he was trying to shove his older brother into the wall. Then he tried to line up in his brother's classroom line. When the teacher told him he needed to move, he quickly fired off, "I don't have to listen to you." She told him that he needed to move or he would have to sit in time out. For most kids this would be a quick reminder that they didn't want to be in timeout. But for him, his senses were already over stimulated and he didn't know what to do with himself or with her, so he kicked her in the shin.

Last year this would have all resulted in a phone call to Mom, who would have had to go up to the school to get him calmed down. But as a result of the therapy we have been to, the diagnosis of Asperger's and the cooperation we have with the school to help him, it resulted in the administration talking through and figuring out that because it's so loud in the gym, he is probably getting over stimulated and simply needs an alternative for indoor recess. They put together a plan of action and called me to make sure it was satisfying. On the days that lunch recess is indoors, he is going to be given the option to go into the office and read a book, instead of going to the gym.

When I got the phone call, I cried. It was tears of relief. They have been listening to our concerns and the progress we have made in therapy. A year ago we had no idea what was causing all the outbursts, but now we can take a step back at the situation and realize how his body is functioning in those situations. Now we are able to put all of our resources together and realize that he isn't a 'bad kid'. He just needs alternative activities when things get over whelming!

I think it's extremely important that they know we are supporting them and in return it's important that they support us.

I am so thankful for the relationship that we have developed with his school.

Thursday, January 7, 2010

Day 7- To Tell or Not To Tell

One of the hardest parts about having a child with Asperger's for us is what information to do tell people that do not know. Who do we tell? How much information do you give them? When is the best time to tell them? How do you respond to their questions?

I still have a very hard time telling people without crying. It's part of the process that we as parents go through. But it's still hard. My life as I knew it changed back on September 10th. It will never be the same. He is not a neuro-typical child.

So far here are a few of the types of people that we have had to tell and how we handled it.

1. Family~ obviously they are given the most detailed information that we have. They were told first and they were given plenty of opportunity to ask as many questions as they wanted to with us giving as honest answers as we can. There were a few phone calls made, but in the technological world we also used email and skype to tell those who are hard to reach.

2. Friends~ This group was told as we saw them or they called and asked how things were going. They are an ongoing group because I still just saw some good friends in the grocery store today and talked with them a bit about it.

3. School~ They need to know what they can do to help him. The only people at the school that know right now are a few close to the situation. As needed we will tell the rest.

4. Sports Organizations~ This is a difficult group. These volunteers who coach him will only coach him for a short period of time, but how they handle him will give him the impression of the sport that he will keep for the rest of his life. He plays two sports, indoor soccer (which actually started today) and baseball. We are a baseball family and come the end of February you will hear a lot about baseball. It is his favorite sport by far.

5. Church~ This group is probably for us the MOST IMPORTANT. As Christians we have a responsibility to make sure that this child grows up in a Christ centered loving environment. We have to have him in a church that has the resources to teach him.

6.Public Servants~ For our family this group is not a crucial as it could be. Our child can identify himself, he can respond to questions that are asked and he can tell us if there is something wrong. But as he is older and is out on his own, this group will become more critical.

7. General Public~ Right now my thoughts are that they are on a complete need to know basis and most of the general public doesn't need to know. I don't feel the need to explain to the people at the restaurant that he has Asperger's. However, if we were ever in a situation that his behavior was causing us to be told to leave, then I might.

Groups 1,2 and 3 are given more of an opportunity to ask questions and given detailed answers.

Groups 4,5,6 and 7 are given or will be given this explanation.

My child has Asperger's. It's an autism spectrum disorder. This causes him to become over stimulated very easily which might cause him to act out. If you have any questions don't ever hesitate to ask.

Then hopefully they will ask a few questions that are important for them to know to help him.

At church I was asked, "When he gets over stimulated, what should we do?"

At baseball practice I was asked, "He was being bullied by another child tonight and started hitting him. Is there anything we can do to make sure that doesn't happen again?"

The questions haven't gotten any easier for me. Maybe by the anniversary of his diagnosis I won't cry when I have to tell someone new.

Then again, maybe this is part of the process and I will cry for the rest of my life.

Wednesday, January 6, 2010

Day 6- Taking a Break

Last night my oldest son asked me to make Texas shaped waffles in our waffle maker for breakfast.

I agreed,knowing the following conversation was fixing to occur.


"Yes, son I know."

"Well what are you going to fix ME for breakfast?"

"Why should I fix you anything different?"

"MOM! You know... I am taking a break from waffles."

"I know."


"Son, you have a choice, waffles or cereal. I am not fixing two different breakfasts."

"No FAIR!"

"Sorry honey, he asked first."

"Fine, I will eat Lucky Charms." (Crossing his arms and hanging his head he heads to bed)

My question is this.... What six year old takes a break from doughnuts and waffles?

The answer is MY six year old.

One morning back in September he woke up with doughnuts on the table from Daddy. Although we are not sure what caused it, he looked at the doughnuts and informed us that he indeed was taking a break from them and waffles. He use to LOVE them. He would eat cherry long johns, two of them, every time we bought doughnuts. When he told us of this change in his diet we didn't think very much of it. When I made waffles he would eat two or even three of them.

How long could a break from doughnuts possibly last? A week? The next time we decide to buy them? So far it's lasted for five months. He has had PLENTY of opportunities to eat doughnuts and waffles and every single time he has refused.

Silently I have set a goal, by the end of the year I want to be done with the break from doughnuts and waffles.

After all, what seven year old doesn't eat doughnuts and waffles?

Tuesday, January 5, 2010

Day 5- Eating Out

Eating out is fun.... that's what most families say. For our family eating out is a range of emotions from anticipation, anger, frustration, embarrassment, facing reality and finally relief.

We went to Fazoli's tonight to eat with part of my family. It's always an adventure and my family is pretty use to it. I am thankful that they take all the range of emotions with us and still agree to eat out with us. I know their lives would be much simpler if they didn't include us in their meal outings.

Our range of emotions start with the anticipation of going out. What's going to happen this time? Who will I see that I might know? And what characteristic of Asperger's will he chose to display this time?

The anger comes when he chooses NOT to eat the dinner he chose to order. He also chooses to run around the restaurant in order to avoid Mom or Dad requiring that he sit in his chair and wait while everyone else finishes their dinner.

The frustration comes when I take a deep breath and realize he is just acting like an Asperger's child would in a situation of sensory overload and shear boredom. This is my life! I don't have a life of perfect little angels who sit at the table politely and wait for everyone else to finish their meals. I have a child whose social skills are so developmentally behind that he thinks it's appropriate to pass gas from both ends and laugh hysterically at it. He thinks that running around in a restaurant disturbing everyone else is appropriate behavior.

The embarrassment quickly follows the frustration. Once I realize what characteristic he is displaying, I immediately want to crawl into a booth and just let him run around..... not acknowledging he was mine. Why can't he be 'normal'? After six years he doesn't understand not to bother others while they are eating? He doesn't understand that jumping from seat to seat at the table is not appropriate behavior? How have I failed as a parent in teaching him proper manners and behavior in public? Do people think this is how we really act at home too? Wait.... IT IS how we act at home!

Now comes the realizing reality. My life is not normal. It never has been and never will be! My child will probably never understand exactly how he should act in public. If he remembers not to run around the restaurant, chances are he will forget to use his inside voice or his utensils. There is only so many pieces he can put together at once for social skills. His brain runs so fast that he can't slow down and remember them all.

FINALLY RELIEF! It's over. We have left the building! On the way home my husband and I always seem to rate the outing. How bad was it really? Not to bad, it could have been better, we need to remember not to go out on days he is overstimulated, it will be a while before we go back there and we aren't leaving the house for weeks!

This particular outing tonight..... it could have been better.

Monday, January 4, 2010

Day 4- Therapy

Today is the first opportunity for me to blog about therapy. To be quite honest with you, it will be blogged about quite a bit. He goes twice a week for up to three hours at a time. Occupational and Speech both days and on Wednesdays he has Feeding Group.

I have to pick him up from school early which presents us with our first challenge. As a boy who THRIVES and I do mean THRIVES on routine, leaving school early is not what he wants to do. He feels as though he is missing the final part of the day. I pick him up about 20 minutes early and he only misses clean up and reading circle, but that is enough for him to feel uneasy. Most kids would LOVE to leave school early. I hear the entire night, "What if Mrs. T hands out an assignment after I leave? What if she tells us tomorrow is pajama day and I miss it?" This is a routine we go through EVERY time we leave school early for therapy. Although Mrs. T is very good about communicating with me everyday and he had tremendous respect, love and adoration for her, he still is extremely worried he will miss something.

The second challenge is convincing him that therapy is not a punishment, but is meant to help him. He doesn't like going because it's 'boring' and takes away from his TV time. He sees kids there that are far worse in speech and physical abilities and I know that it scares him. It shouldn't, but it does. I fear that he is afraid he will become them. At age 6, you don't understand that they were born that way.

Those are my two main challenges when I take him to therapy, twice a week. During the summer he goes to therapy school and that presents more challenges along the way.

I know deep in my heart that he needs therapy. It will be an ongoing production that is going to teach him the social skills and behavioral skills he needs to be a productive adult.

Until then, I will spend my days convincing a six year old that it's ok to miss a little bit of school, when you are going to therapy.

Sunday, January 3, 2010

Day 3- Sunday = Church

Today has been pretty quiet so far. My mother kept the older boys last night and got them ready for church this morning. So I had a quiet night to blog and go to bed early.

My family has been searching for a church that was equipped to accommodate a child that is high functioning Asperger's. My husband and I have always said we could be fed anywhere, but our children were number one when it came to finding a church home. We think we have found our home. They are always willing and able to take suggestions that we have and they have a classroom for special needs children, so if he does get over whelmed in a regular classroom he can easily be moved in there for a cool down period.

I don't think that when the new idea of sensory overload on neuro-typical children will have them enjoying learning about God, Jesus and being a Christian was introduced the people who came up with this new "Sunday School" had any idea what they were getting themselves into. Yes, for about 95% of the children the lights flashing, drums beating, music to loud, everyone dancing and jumping around is fun, inviting and makes them eager to pay attention. But for the 5% of children that are not neuro-typical this is not the greatest concept in the world. In order for a church to implement this style of class, they must have a safe place for children who get over stimulated to go. Unfortunately, there are churches around us who have not figured this out, or who simply do not have the resources to accommodate these children. This is extremely unfortunate for those parents who are trying to find a place for themselves and their children to worship and love the Lord.

We have been very fortunate in this regards. We have found a church that is willing to communicate with us what happens during class time. They are not afraid to work with him and help him calm down. They ask us for advice on what to do in situations and even have the manpower to assign him an assistant all to his own on the days that he is a little out of hand.

That was the case today. I could tell that the overload from spending two nights away from home and not having his routine was getting to him. I took a moment to find one of the workers in charge and advice them of his state of being today. With that he was given a hug, told that he was going to have an awesome time at church this morning and escorted into the worship room to find his assistant for the day. What an awesome relief I had worshiping this morning, knowing that my child was being handled in a caring and loving way.

On a side note, the sermon this morning was really interesting. When I started this blog it was going to focus on Asperger's and my child that has it, but this morning when I was listening to the sermon I realized that God is also going to be an important part of this blog. We walk right beside him everyday with our children and want very much for them to know and understand the grace he has given us.

This morning our sermon was about New Year's Resolutions. Hmmmm.... God sure does talk to you when he wants to! Basically we were given seven things that we need to remember to resolve ourselves. I only want to focus on one of those here. And I know there is never anyway I will be able to explain it to you as well as the pastor did.

Proverbs 3:5-6 Trust the LORD with all your heart and lean not on your own understanding; in all ways acknowledge him and he will make your paths straight. (NIV)

"God knows what's best for me and I can trust God 'No Matter What.'" Those were the exact words that came out of the pastor's mouth this morning. Seems fitting that not only do we are there for him "No Matter What," but God is also!

Saturday, January 2, 2010

Day 2- The Sleepover

I realized around lunch today that this is going to be harder than I thought. My main thought was to focus each day on one 'incident' in our lives and let you feel what we feel going through it. But by lunch we had three key Asperger's quirks that had come up. I only have 365 days to get you to feel what we feel, so how can I only focus on ONE a day! There is no way. I will plug on though and hope that in this short amount of time, you will have the opportunity to spend just a few moments each day in our shoes.

Last night, one of my best friends invited the oldest two boys over for a sleepover. Their family has boys the same ages as ours and they frequently play sports together. What she didn't know was that this was my middle boy's first time to spend the night away from family. Yes he has spent the night with grandparents and Aunt/Uncle's. But this was his first REAL sleepover. I will admit that Mommy was more nervous than he was. He was just excited to be included for once. His older brother has been taking part in this ritual for several years now and he has not thought it was 'fair'.

Fair.... that's a word we use a lot around our house. Whenever one child for whatever reason thinks something is not fair, they express their feelings to us. This is a word you need to file in your bank for later posts.

He made it through the night fabulously! No hiccups that I will ever know about (thanks to my dear friend). But this morning when I went to pick him up. The look of excitement and wonder in his eyes was priceless! He hasn't stopped talking about his sleepover all day! Thank you dear friend for making a difference in his life. Though you might thought it was small, he will remember drinking root beer floats and watching the movies for the rest of his life! And the love your kiddos show our entire family is so amazing! God has great things planned for your family, of that you can be sure!

We are all ready for school to start back up in two days. Whether the boys want to admit it or not they each enjoy school in their own way. For the oldest boy, it's a chance not to spend twenty four hours with his brother. For the middle boy, it means routine. He doesn't understand why, but his body thrives on the routine of the day.

Routine is around the corner in two short days!

Friday, January 1, 2010

Day 1- The Introduction

I am starting this blog as a New Year's Resolution. In my adult life, I cannot remember having a New Year's Resolution. This is a subject I am passionate about and I hope in the next year you will enjoy reading the stories of our lives.

Let me introduce you to my family:

Zach is my husband. We have been married for nine years. The day we got married we pledged to be together "No Matter What". This has been in our hearts for many years and recently we have extended that verbally to our children.

Austin is my oldest. He is nine and in the third grade. He loves to play baseball and work on 'scientific stuff'. Although he will not be the focus of this blog, it is important for you to know that he has ADHD. He loves his brothers, but doesn't understand why Tanner is different and embarrassing.

Tanner is my middle child. He is six years old and is in the first grade. He will be the focus of the blog. On September 10, 2009 he was diagnosed with Asperger's Syndrome. Asperger's in on the autism spectrum. This came after many years of trying to figure out why he was so difficult to deal with. I will go more into detail on his diagnosis and the signs we missed throughout the year. He loves playing baseball and watching TV, playing video games and just being at home.

Trey is my youngest child. He just turned 18 months. Although he isn't old enough to be a part of the wonder of Asperger's you will hear about him from time to time.

My name is Stephanie. I am a stay at home mom. I stay very active in our church, the boys elementary school. I recently watched a movie that inspired me to write this blog. I am going to commit to one year of writing, with the exception of a couple of days in June you will receive a new post everyday.

I hope that my stories can inspire each of you to follow your heart and be passionate about something. 1 in 94 children are diagnosed with Autism and 1 in 51 boys. That means in our elementary school alone there are approximately 8 children with and ASD (autism spectrum disorder). It also means that everyone in this world knows someone with autism. For me I never thought that it would be my son.

Wish me luck! This is a tremendous task that I am about to take on, however, I believe that this is the first step in raising awareness.