Saturday, February 20, 2010

Day 35- Road Trip #2

The hotel we stayed at was about two blocks away from one of Tanner's favorite places.
Coors field, home to the Colorado Rockies! Not that he had ever been there before, but has several baseball field books that he has memorized. We had to take a picture that was exactly like a picture he had seen in a book.

It took several tries but here is the shot we FINALLY got....

I think the thing that amazes me about this is we did not have this book with us. He remembered in his mind what the picture was suppose to look like. He remembered the angle, the color, the fact that it was horizontal... he remembered it all. And he was NOT able to settle for a picture that was anything less than the one in the book.

He thinks in pictures. Everything he sees, he takes a little picture and files it away in that amazing mind of his for a later date.

Two years ago this would have frustrated me to no end.

But now, I know, this is Tanner and I have accepted it and love it and even embrace it!

Friday, February 19, 2010

Day 34- Road Trip #1

Right after we got the news from the therapist of the possibility of PDD-NOS, we left and went to see family more than 22 hours away. My mother, my brother, the three boys and I all piled into my mini van and headed that way!

We spent two days getting there, stopping halfway in Denver, Colorado to spend the night and eat at one of our favorite places, Casa Bonita. Also known to our family as Costco Bonita, as Tanner has named it. This is a Mexican food restaurant that is not famous for it's food, but rather it's atmosphere.

With the band aid ripped off and my wound of a expectation of my child exposed we went to eat there. They have cliff divers, pinata's being broken, a gun fight and many other stimulating activities. Not sure what to expect from him, I'll admit, I was nervous.

The first time we had gone, it had not gone well and we ended up losing him in the crowd. A scared moment for both Mom and child, he was only about three years old and didn't know what to do, so he just started screaming. At the time, I was completely embarrassed by his actions, but thinking back on it, I should be thankful that he did and we were able to locate him fairly quickly.

We got our food and sat down in a corner of a fairly quite room and ate our dinner. During that time we were able to get up a couple of times and see the cliff divers, but were also hidden when the gun fight came out.

Then it came time for the pinata breaking.

My brother took both boys down to see it and I finished up my dinner for a few minutes. Then I joined them. When I walked down, Tanner was clinging to my brother with his hands over his ears anticipating a loud noise. Before, I would have taken his hands down and forced him to listen to it. It would have result in him screaming his head off, anticipating this loud noise that we all know won't happen, but because I was aware of the possibility of a diagnosis, I was able to shrug it off and know that it made him feel safe in a world that he has little control over.

We had great dinner! One of the best we have ever had!

For me this was the first time I was able to let loose and know that the little things aren't important and they make him feel safe and I was the one who needed to change, not him.

Thursday, February 18, 2010

Day 33- Review of "Dear John"

A dear friend of mine brought me a book a couple of days ago to read. It was the book "Dear John" by Nicolas Sparks. She had seen the movie, bought the book and read it and thought of me. If you haven't read the book and don't want the plot to be spoiled, I encourage you NOT to read this blog until after you have read the book.

For those of you who have read the book (or maybe have even seen the movie), you might have a clue what this is about. I haven't seen the movie, so I don't know yet if the same plot is evident in it.

My friend had encouraged me to read it saying that Asperger's was in the plot. So I picked the book up to read and within the first ten pages I knew which character had Asperger's.

The main plot of the book is about a guy who was going no where in live signing up for the army. When he was on his first leave, he went back to his hometown where he met and fell in love with a woman. Typical love story, but not the point of the blog. Had I not been familiar with Asperger's and interested in the plot I would not have been so intrigued by this book.

This man named John Tyree is estranged from his father. He finds that they have nothing to talk about and feels that his father doesn't care about his life and what he does. His father has eaten the same breakfast for as long as he could remember. He leaves for work the same time everyday. And my favorite... his father is obsessed with coins. Has been for years. While John is contemplating why his father has all these weird quirks, I am screaming at the book, "HE HAS ASPERGER'S!!!!!!"

Their relationship is strained at best. John knows exactly what to expect from his father by way of emotions and that is not a whole lot. He asks him questions about his day and gets unsociable answers of "It was fine" or my favorite "It's okay." John's dad tries to ask questions about John's life, but doesn't seem to be interested in the answers. This frustrates John to no end.

Then John meets Savannah. She is a special education major for a few hours away. She is spending the summer in his town working on a couple of homes for habitat of humanity. They immediately have a connection and spend a lot of time together during his leave. One of the things she asks to do is meet his dad. He is reluctant, but she insists. So they spend a few evenings with his dad. She seems to enjoy being around him, asking questions about his coin collection and keeping with his schedule. John seems pleased that she is so interested in him.

But then a couple of nights before he is set to go back, she sets his world spinning. She offers the idea that his father might have Asperger's and wants him to read this book. After a huge argument, he leaves her standing there crying, wishing she had not said a word. Feeling awful for the way he treated her and after spending most of the night up in anguish, he reluctantly starts reading the book. In almost and instant he realizes she was right and his whole perception of his father changes. He begins to realized why his father acts the way he does and doesn't act the way John wants him to.

He apologizes to Savannah and their relationship moves on.

However, the relationship that he builds with his dad becomes priceless. After realizing that all his dad knows is coins, he once again allows himself to be interested in the stories that he has heard millions of times. This is what his dad knows and while it doesn't mean much to him, it means the world to his dad.

Towards the end of the book, his father dies. But before that happens, John is given the opportunity to tell him that he loves him and that he was the greatest father in the world. To which the father replies, "I love you too."

I cried throughout the book. Not because he dies, or because the relationship between John and Savannah is ended, but because this man was never diagnosed. He simply went through life and adjusted. He was 'strange' to the people around him. Living in his own world he didn't care. But I have to wonder what more he could have had out of life, had he been given the tools to succeed.

I do recommend reading this book, not because of the predictable love story, but because you are given the opportunity to see how an adult with Asperger's might live.

I can only pray that by knowing that Tanner has it, working with him on his social skills and giving him what we think will help him, he can have a more social adult life than this man did.

Wednesday, February 17, 2010

Day 32 -May 29, 2009

The kids got out of school early that day. We went with some friends and ate at a local burger joint that has a sandbox playground. That night we were set to have a baseball game. In the middle of the playoffs, this game was for advancement to the championship or third place. It was a bright and sunny day. The kids should have been outside playing all afternoon. But instead we were stuck in a therapy building. I had spilled a 32 oz drink all over myself at lunch and with no time to go home and change, I still had on my wet capri pants.

We were set to meet with the director of the therapy services. She had come recommended to us by my friend. She wanted to personally meet with us and see if there was something we could do to help this child. My husband had to work that day, but luckily had gotten off earlier than expected. Looking back, I realize that God didn't want me to be alone.

She took Tanner back for a few minutes to observe him, while I waited for my husband to get there. Our older son had gone home with some friends, so I only had the baby at the time. As my husband walked in there was this feeling of hopelessness that fell between us. We didn't know what else we could do to help him and it seemed this was our last option. We were both praying they would have answers for us. Was it Sensory Integration? Was he just a bad kid? Did he have Oppositional Defiant Disorder?

The owner called us back and we nervously walked through a hallway, back into a room. We sat down in two child size chairs. Looking back and forth at each other I made eye contact with her and she started asking questions.

How was he developmentally (did he rollover, crawl, walk, talk on time)? Tell me about his outbursts at school? Does he have the same outbursts at home? All questions we seemed to think she should be asking.... then came the questions that blew us away....

Can he dress himself? Does he wet the bed? Tie his shoes? What does he like to eat?

My husband and I looked at each other in confusion... why was she asking these question? What did these have to do with his behavior?

After about thirty minutes of grilling us and us staring at her wide eyed in confusion but wonderment she told us what she was thinking....

"Do you know what Pervasive Developmental Disorder is?"


She explained that PDD was an autism spectrum disorder and that all of the symptoms he was displaying were that of a child with PDD. He was possibly getting over stimulated right before his outbursts and doesn't quite know what to do... so he acts out. I tried to soak up as much information as I could. She told us that he would start Occupational Therapy and Speech Therapy as soon as we got back from vacation (about two weeks later) and that throughout the summer we would get him on track so he could have a productive school year.

I walked out of the building and called my mother. She was the first person I knew that would help me find all I need to find.

Within 24 hours my mom met me at Barnes and Noble, we bought every autism spectrum disorder book they had.

I knew this was going to be a summer I would never forget. Not because it was fun, but because I was going to become educated on everything spectrum related...

and I was NEVER going to give up finding the answers to help him.

Tuesday, February 16, 2010

Day 31- Early Signs #1

As much as I fight it, I find myself remembering things that happened at an early age that I should have "caught". I am an educated woman who was raised around special needs children. I should know that my child is not quite like everyone else.

However, I think I was blinded as a mother. My child was perfect, there was nothing wrong with him. I also know that several people tried to tell us. Some days I wish they would have grabbed me by the arms and shook me until I listened to them. One of them was my grandmother. She very subtlety told me things throughout the years. Even when she was sick she tried to tell me. I remember one day in the hospital she made me promise not to ever give up on him or his older brother, "They are great kids," she said, "They just need you to help them."

As I was walking through the hallway tonight something caught my eye. We have pictures of the boys at all stages of life lining the hallway. When Austin was around 4 and Tanner was just barely 1, a local photography place did 'pond pictures'. Great idea I thought! We will take the boys in rolled up overalls with no shirts on and take some 'little boy' pond pictures. I spent forty dollars on overalls and 10 dollars on a setting fee. Got to the store, dressed the boys up and we went into the pond room. First picture we were going to take, on a pier with our feet in the water. The water, though inside in the middle of summer, was cool. Tanner REFUSED to sit down and put his feet in the water. He screamed when I put him down and in it. Ok, no biggie, we'll take a couple of Austin and move on. Not so. Every pose I tried to place him in he didn't want any part of. He hated that water, he hated the boat that was unstable, he hated it all.

Tonight, I was once again reminded that I got one picture of Tanner that day. He was standing next to a window above the pond. His face so red and eyes blood shot from crying. The look on his face is one of pain and agony. He looks like he wants to crawl out of his body because it's bothering him so much he doesn't know what to do.

I had never had a problem with him before taking pictures, so at the time, I just figured he was having a bad day, was tired and didn't want his picture taken at all.

But walking through the hallway tonight and seeing those pictures, I just had to break down and cry. Once more that was a sensory issue that I should have picked up on. I feel like a failure as a parent. I should have known. This child depends on me to help him and for five years, I couldn't figure out how. How much time have we lost in finding his potential, because I failed to see all the signs?

I will never know the answers to that question. I just need to press on and be thankful that we know now and we know what to do to help him.

Day 30- Personal Space

Currently Tanner's speech therapist has him working on personal space. He has a hard time understanding that people do not want him standing right up against them, or sitting on their laps when sitting together one a couch. But at the same time he doesn't like it when people enter his personal space. He feels crowded and almost claustrophobic.

At first this was a fun concept for him to try. He is suppose to keep a hula hoop between him and anyone else he is around. I have never heard of the 'hula hoop' concept, but think it would be very useful in more cases than just Tanner's. I find myself reminding my nine year old he needs to 'respect the hula hoop.'

Once again, I talked to his teacher about what we are working on and she is helping us with it. I think at school the big problem is touching people when we are walking in the line down to music or PE or lunch. So we are applying the hula hoop concept and though it appears he may be lagging in line, he is just trying to keep the hula hoop distance from his peers.

After about two or three weeks we start getting this conversation:

"Tanner remember, personal space."

(In a whinny voice) "UHHH, I am SO over personal space."

I think that this is our clue to move on to the next social issue.

Monday, February 15, 2010

Day 29- Sensory Intergration- Music

I think by far, this is one of the issues that baffles me the most. It's not the loud noises, it's not soft noises, it's not specific genres of songs that will set him off. It's listen on his terms and at the decibel he wants to.

Wedding Music... As I talked about in an earlier blog, soft wedding music set him off. This could be from number of things. My belief is that it was not JUST the music that caused the meltdown. It was the soft music (that to him was boring music) along with the overload of people. I took a lot of information from that day. I am still processing it all and working with him to figure out exactly what we can do to make those occasions better for him.

Music class at school... we suffer in there a lot. Once again, it's a combination of things. While we don't have as many problems in there as we did last year, every once in a while he refuses to cope with it. It's a boring class to him. He hates to do things he doesn't like on other peoples terms. He hates being called out when he is unsure of the answer and this is a class in which he could be unsure. And most importantly, he hates people watching him. In music class, this is an easy perception for him to get. They sit in a "U" shape on risers. Kids look all over the place during class, it's unavoidable. So, one child looking in the direction of Tanner can cause him to perceive that child is "looking at him" and "making fun of him." He comes home everyday and tells me they played a boring game. And to be quite honest, I am surprised he doesn't have more problems in there.

Music during church... when I was a kid we went to Sunday School. We MAYBE sang a couple of bible songs and did a craft and had a story. NOT NOW! These kids are given sensory overload in the form of music, lights, and body movements! This is a great concept, except that they seem to have forgotten some kids being over stimulated is not a good thing. Mine in particular. Most of the time he does well, however, this was one of the big problems we had in the beginning, when we did not know how to help him. I have figured out that he needs to go to church first thing in the morning, before he goes anywhere else and we have a close relationship with the volunteers and staff at the church we go to. They know what to do with him and can even recognize when it needs to be done!

Concerts... he loves to go, but when we get there they are too loud. He solution to this is to hold onto Mom for the entire time. This is great exercise for me, holding a 50 lb sack of potatoes for two and a half hours. But soon it will not be. We have a set of earplugs for him to wear, but he only wears them about half of the time and still hangs on me. The last concert we went to was a Christian hard rock and I caught him on several of the songs 'feeling' the beat through my body and his. It's a feeling I think I take for granted, but he appreciated.

Car.... he doesn't seem to be bothered by the car noise most of the time. However, Mom and Dad have a hard time with the music in the car, because we can't hear his soft voice in the back of the van when he is asking a question (which he does A LOT).

MP3 Player... by far his favorite. He cranks it up so loud we can hear it and plays "Big House" over and over and over and over and over and over again. It's currently the only song on his player. I think this is cool because I remember rocking out to "Big House" when I was in junior high. I think it's strange that he chooses and rockin' song as his favorite to calm him down. He asks all the time to listen to it.

Commercials... (insert Olympics Theme here).... he LOVES THIS SONG! Spends hours a day imitating it. Right now the Olympics are going on, so naturally he is hearing it quite a bit. But last night, with everyone in bed, in the silence of the house I heard him humming it to calm him down. He picks up on contemporary songs that are on commercials also. I catch him singing songs I didn't know he had heard. "Tanner, where did you hear that song?" "It was on the (insert commercial product here) commercial the other day."

For now this is all the data I have collected on music. It's a continuing process as we will enter the world of choir and band in a couple of years. The state of Texas has some mandates on taking these classes so it may be one of the future modifications we will have to make for him.

For now, I hope it brightens your day every time you hear "It's a big, big house, with lots and lots of rooms." Know that Tanner is rockin' out with you!