Sunday, February 28, 2010

A window to Charlie

About 4 months ago one of Charlie's therapist asked me if I have ever heard of Temple Grandin. At first I thought it was a place, but soon came to realize that Temple Grandin was a person. David (Charlie's Therapist) told me that I should look her up on the net, and that she could possibly help me see a little bit into Charlie's mind. I was at the point of information over load so I told him I would look her up later, and quickly forgot her name. Fast forward to Jan. 2010. I was talking to a dear friend of mine online when she brought up the name Temple Grandin. She told me she was a brilliant woman and that I should look her up. I again, thanked her and promptly forgot about her. I didn't actually look up who she was until a different friend made a post on Face Book about Temple Grandins movie on HBO- So after this third time of hearing the name- I decided to look her up.

Temple Grandin is an Autistic woman who has over come her battle and is a Dr of Animal Science. She gives hope to all people. Autistic or not.

I don't know why I was in such a denial to look her up, but I was. I wasn't ready then to receive all her information at those moments in our life. The beginning of February I bought all her books, and started reading. I know now that if I would have read her books months ago, it would have been overwhelming and I would have missed the point.

I read her first book Emergence: Labeled Austistic First. It was brilliant. It opened my eyes in a way that I don't think anyone else or anything could. She wrote about her life from the first moments she remembers to when she wrote the book. Temple has over come so much, and is so completely brilliant that I am in awe of her.

I am reading two of the books at the same time right now. I am reading Thinking in Pictures by Temple Grandin, and then A Thorn in My Pocket by Temples mom - Eustacia Cutler. Both books are fantastic.

Whenever I finish a sentence, a paragraph, a page, a book of Temple's it opens my mind to see how Charlie thinks. We could never figure out how to communicate with Charlie. Why he wasn't talking. and when he was talking it was jibberish, but you could tell he thought he was saying the correct words. After reading Temple's books it's so clear. He's just like her. He thinks in pictures. Words mean nothing to him. They confuse him and make it hard for him to communicate. But if you take language out, Charlie is brilliant.

Reading Temple's books has been a window into Charlie. I can look through and see him, but yet I am not quite able to touch him. The window is stuck shut at the moment, but I hope to one day open it and climb through. I hope one day I can hold Charlie and we can communicate with no barriers.

Reading Eustacia's book just instills in me that I am Charlie's mother, and there is no one in this world that can change that. Right now I have to speak for Charlie, stand up for Charlie, and when the need arises, I need to never back down. Charlie relies on me to get him from minute to minute, hour to hour, day to day. What Charlie doesn't know is I need him more then he will ever know.

Working with Charlie on his speech every day is really starting to take effect. He is starting to talk more and more. It's the little things that make my heart skip a beat. Whenever he signs or says more it's like I am hearing his first word all over again. My heart starts to race and I get excited. My baby is communicating in words to me. This morning as I am sitting here writing this blog, I noticed Charlie was dancing- This is always his cue that he wants music. So my husband goes over to my computer to play Charlie's favorite song. In order to pacify his need at the moment I start sining part of the song. It goes like this "You know I'm a loner and you got that right." and after I finished that sentence Charlie sang "You got that riiiiight!". My heart dropped in my stomach. I couldn't believe what he has just sang. He said it a couple more times, and then it was gone. It's moments of pure clarity that I live for with him.

I think Charlie see's life in music, and his life is a big musical. We just need to find the right theme song :)

Monday, February 22, 2010

Miss Nanie

So Nanie has been in our life for a little over two weeks now. It feels like she has been apart of our family forever. It is amazing how much she has changed us all. Let me explain-

For Charlie she is EVERYTHING. And I really do believe that she was made just for him. Her purpose in life is to serve Charlie, and to be his partner in crime. She is still a puppy, and she since she isn't properly trained there have been bumps in the road. She does play a little rough, but she is doing things I like. When Charlie is out in the backyard getting things into he shouldn't and since she is always by his side she just grabs his arm or the back of his coat and leads him away. She is only 12 weeks old now, and already knows how to do this. The only problem is, is thoes dang puppy teeth! She has scratched charlie alot, but she is slowly learning how to be gentle. I hope to get a trainer out this week to work on it with her!

For Amelia, She keeps Charlie away from her, but Nanie also loves and gives her kisses, it's pretty cute ;)

For our other Dog mai, she has been his savior. Before we got her he didn't really like other dogs, or to do much of anything. We were a bit leary of bringing her in, but we were prepared that we might have to get rid of someone. I can say this- i have NEVER seen Mai play with another dog like he does Nanie. He is submissive (general he's pretty dominate) and plays sooo gentle with her. It's like he knows she has a purpose, and he is helping guide her in the right direction.

For Brian and I - she is a god send. She is our light in this dark tunnel. With the right training I know she will be an amazing service dog, and partner for Charlie.

Oh Nanie- if only you could really know how much you really mean to us <3

oh softness!

Most people who know Charlie know that he has a huge obsession with soft fabrics. It's his vice. The softer the fleece, the better. We have soft blankets and clothes galour for him. His favorite thing that I just bought recently was a Cloth diaper. Now we started Cloth diapering Charlie around the time he got ill because he had such a bad rash that wasn't going away. We figured it was probably from the chemicals in sposies, and made the switch. I have spent lots of money trying to find dipes that charlie likes. We stopped CDing last august because it proved to be too much with two kids. Well the end of January I was doing bills and added up how much we were spending on sposies.... it was WAY to much! So we switched back to Cloth dipes.

I got a couple different name brands that work and Charlie tolerates. But there is one diaper that he loves. I mean he LOVES! Whenever I pull it out he gets all giddy and does the sign for more. He can't WAIT to put it on, and then ends up rubbing it the majority of the time. I got this dipe from a Work At Home Mom, who makes and sells Dipes for a living. Charlie's dipe is made out of soft fleece on the outside and velour on the inside. I have ordered more, and am impatiently awaiting their arrival. This is the only diaper Charlie doesn't try to pull off, but actually gets excited to get put on! Of course Amelia got some cute dipes too ;)

Love, Love, LOVE this dipe! So those who read this who have children with sensory issues, and/or cloth diaper I HIGHLY recommend this mama! You can find her on Face book under CC Bums!

Sunday, February 21, 2010

Weekend trails

Weekends are always a time for fun for us. My husband is home and we either have a busy crazy weekend, or a laid back relaxed weekend. For Charlie we try to even it out so he doesn't get two days of over stimulation, but rather just one and then one day of resetting. Last year we took Charlie and Amelia to the beach for the day and He had LOVED playing in the sand and in fact, in the ocean as well! Lately I have been day dreaming about that day, and was longing to get to the beach so Charlie could have a fun filled day. Finally on Saturday we were able to make plans with my parents and we met them at the beach. We took the kids to the Newport Aquarium and we were there for a couple of hours exploring all the different exhibits that awaited us. Charlie loved it just as much as the last time, Running from tank to tank looking at all the different fishes. There is a point at the Aquarium that is called "Passages of the Deep" and it literally is several tunnels you walk through that are filled with all different types of fish. One tank has all different kind of sharks, and it is amazing to see them so close. I could tell Charlie was starting to get overwhelmed and over stimulated in the tunnels, so we went outside for a little nature walk. Charlie really loves walking and this was a great time for him to calm down and unwind a little. On our way out we got him a mechanical toy that he could focus on so it wasn't tramatic leaving, and we quickly left and headed to the beach.
I was excited to get to the beach. It was a rather warm day for Mid Feb. at the Oregon Coast. So we got on the beach, took off his shoes, and I expected him to full on run and play.... boy did I fail. Instead he shrieked, and cried until we were able to pick him up and wipe off the sand. Once we got to the harder sand I put him down thinking that because there wasn't soft sand he could sink in, it would be different. Nope. He was crying almost as if he was in pain. So we held him the whole time. At one point we had put him down in the ocean with the water swirling around his feet. He was good for about a minute then started screaming again.

After coming back from playing in the ocean, we got his feet dry and socks and shoes back on.... and guess what? He was walking in the sand and having fun! As long as it didn't touch any part of his skin he was having a blast!

You could see in his eyes that he was happy, that he was a little two year old boy enjoying the beach with his Grandparents and Mom and dad.

During dinner Charlie started to act up a bit. The day had proved to be too over whelming for him, and he just couldn't take a restaurant. We all ate dinner, and enjoyed it to the best of our abilities. Charlie wasn't that bad, but I could tell he was reaching his limit. His cup was full, and was about to start running over. Once dinner was done and we said our good byes we headed home. The car ride home was a little rough. Charlie didn't know what he wanted, but insisted on eating ungodly amounts of snacks, and finally passed out 30 minutes from home (the car ride is about 2 hours). Once home he couldn't go back to sleep, so we snuggled in bed and watched Finding Nemo, and we talked about all the fishes, and sharks that we had seen. He finally settled down and My husband put charlie in his crib, where he promptly went to sleep.

Whenever charlie gets overwhelmed or over stimulated, the next day is always rough for him. He has a hard time dealing with simple things that he can normally do quite well. Today was a day of little battles, and big challenges. This afternoon I was sitting at the computer uploading pictures I had taken yesterday at the beach when I came across a special photo that I just couldn't help by cry when I looked at it.

Yesterday as we were leaving the beach, I looked back and took one last photo. It represents our daily lives. Here it is

Let me explain: The Ocean is the world- right at our fingers tips, It ours for the taking, yet we just can't quite make it yet. There are obstacles that we must go through in order to reach the ocean's front. There will be individuals and groups of people that come in and out of our lives, they will either hinder us, or help us to the ocean front. We must work together as a family, picking up and carrying ones who can not make it through the obstacle, and knowing when to ask for help. Off in the distance is a light house. At night it's light helps sailors keep track of the land to make sure they don't run aground, for us it represents all the friends and family that help us, and guide us through rough waters, and to help keep us on coarse.

From day to day the challenges maybe rough and hard to handle, but when I step back and look at the great picture of our life, I can't help but smile, because to me it is the most beautiful picture I can ever imagine.

Sunday, February 14, 2010


I get asked alot by family and friends "what is Autism? What causes it?". When people think of Autistic kids they tell me they think of "Rain Man" or a kid who sits in the corner unaware that life is all around him. So this is to all the people who need answers.

***Please note these are my opinions and things that have been told to me. If you want to form your own opinion I am going to post links at the end. Thanks***

So I will answer this first - What is Autism? (Again please understand that these are my own opinions that I have come to terms with after much research and our own experiences)

First it is known that Autism is a Neurological disorder. There is something that happens that disrupts the neurons in the brain of these children that causes them to "malfunction". Autism Spectrum Disorder is just that. It's a spectrum, Meaning that there is such a wide range of symptoms, that the disorder is hard to diagnose. There is the low functioning side which are the children who have little function, and then all the way at the other end, you have high functioning which is like Charlie. He can do alot of things, but he is delayed to the point that he needs therapy to help him progress. And then there are different Autism disorders like Aspergers, and PDD-NOS. Children with Autism are generaly very intelligent, they just can't communicate. But I promis if you ever have the chance to sit down with a high functioning Austistic, you would be amazed.

Next question--

What causes Autism?

I believe it is just not one simple answer. Autism is a puzzle in all aspect of the disorder. I believe that there is a genetic compent, wether the trait is resesive or dominate is not a factor at this point, but the fact that it is genetic is. I believe that every child with autism starts out on a slippery slope. If toxins, and environmental distrubances are introduced to/into the child from newborn, then the disturbances in the brain will be greater and more extreme then thoes who did not get vaccinated at birth, or had toxins introduced in utero. With that said, I do believe that children who do not get vaccinated but have the genetic compent of Autism will progress on the normal scale but Autistic traits will pop up, but they stand a better chance at being "normal". With that said, I truely believe this DOES NOT apply to every autistic child, as Autism is a spectrum and the range from low function to high functioning is so great, that I strictly speak for my child, and my child alone.

So with that said -- this is what I THINK happened to my son. I can not give scientific proof, nor do I believe I have to. After all I am his mother and I know his body better then anyone else--

We believe Charlie was born with a developmental delay- You can tell by his facial features, that there is a genetic compents to said delay. I also believe that if he had not had the vaccinations at birth and up until 4 months of age, he wouldn't have been so ill his first year or so of life. I also believe that because the toxins in the vaccines were introduced into his body so young, he started down a slippery slope that we are just now trying to climb back up.

I believe that we eat and give our children so much GMO's, MSG's, and chemicaly infected products that they don't stand a chance anymore. Our lifestyles have become so chemically driven that children are having more disorders then they ever had. People buy into convience, and not into health... It really is a sad thing.

So Here are some links to Autism websites that you can read more about the disorder.

And again- please note these are my own opinions, thoughts, and feelings- I in no way have scientific proof of anything I have just said.--

Sunday, February 7, 2010

Puppy tails

I'm gonna make a couple different posts today, but I wanted to do this first. Last Saturday we went and got Charlie a German Shep. Puppy to train as his service dog.

I have always been drawn to animals and have always had a big heart. I usually follow my heart and not my brain. Well in search of finding Charlie the right dog, I had to listen to my brain.

Last weekend we searched several shelters and rescue groups only to be told that they couldn't help us. After dealing with the last rude lady, I decided that while I was trying to help Charlie and rescue a dog at the same time, it just wasn't going to work. So we went to a Breeder instead. Saturday night we brought home Charlies puppy.

I believe animals can help people in a sense that no one can truely understand. And this just proves my point. From the moment Charlie and Nanie (thats what he named her!) first met there was a deep connection. There were 2 other puppies in the room we went in, and Nanie was the only one that would follow Charlie around. We decided it was fate since she was a long/medium haired GSD. I was cautious of the following days that we were about to experience. I for sure thought that it was going to be rough and Charlie was going to have a hard time excepting a new dog into the household. Boy was I ever wrong!!

Charlie started talking more, and communicating. Him and Nanie were stuck together with invisible glue. Wherever she went, he went and vise versa. His tantrums went from 10 a day to 2. He was starting to change. When we first got Nanie, we had named her Sissy. It was one of the few words Charlie could already say. Well after a couple of days he promptely told me when I called Sissy to me "No!!! NANIE!!!" And ever since that moment it has been Nanie. If you try calling her Sissy, he becomes upset and starts screaming "NO!! NANIE! NANIE! NANIE!"

During this whole first week of having Nanie I didn't want to get my hopes up because I know that whenever you get a new dog or puppy you have that honey moon stage where every thing is great, until she settles in.

I am still waiting for all hell to break loose, and for me to go crazy, But this has been by far the easiest, most laid back puppy that I have met. Nanie connectd to Charlie like no one can connect with him. It's like they get each other. Nanie helps Charlie through his rough moments, and helps him in ways that we can not imagine or even begin to grasp.

This past week hasn't been easy- It's been hard trying to train a puppy in all aspects. She is a brilliant puppy and learns quickly. House breaking is going well, but she still has accidents if we get distracted and not see her cues to go out.

I have said to many people during this past week. If tomorrow we have to get rid of Nanie, or some how the connection is lost between them, it doesn't matter. Because this past week has been one of the best weeks of my life, and I would do it again in a heart beat.

Thursday, February 4, 2010

Good Morning Charlie!

It's almost a parents right of passage to be exhausted at the end of the day, and when the sun is shining in the morning and the kids are stirring, you just can't get your butt out of bed. You lay there thinking "Alright body, we can do this the easy way, where you will let me sit up, hang my feet over the edge of the bed, I can stretch, yawn, etc., OR we can do this the hard way were I will my self to roll out of bed praying the whole way I don't hit something and bash my head....your choice"

Luckily I have a partner who doesn't have this problem and helps me wake up with the first option.

But honestly it's mornings like these that make me really wonder how Charlie does it. Granted he does sleep 8 hours a night. He does wake up several times, but still. How does the kid do it? Every morning he wakes up with bounds of energy. Depending on the day he is either in a good mood and ready to take on the days challenges, or he is a horrible mood and mommy gets to take on the challenges and then some.

Lucky for me the bad days are becoming less. We still have our fair share, but they are finally spacing out. Some times I can see a bad day coming from a mile away- due to environmental changes, or some days it just slaps me in the face and says "HI HELEN!" (my name isn't Helen...)

Environment is everything to Charlie. The slightest changes can set him back, or throw him forward. It depends on how he takes it all in. This past weekend we started to slowly change the front room around. We had got our tax return monies and decided to finally get things we needed. I knew that by Wednesday the front room would be completely different. We went to Ikea and got a wall hanging cuby shelf ( we put the wii, DVD player and dvd's and video games in this), and then a standing cuby shelf to match. We also got a new recliner that is a soft suede (Charlie's new favorite chair, he spent a good majority of the day yesterday petting it) and a small flat screen TV to hang on the wall out of Charlie's reach.

We slowly started Sunday in the evening, Putting the TV up. and rearranging the furniture. Monday we went to Ikea, and Tuesday we went got some paint and waited for Charlie to go to sleep. Tuesday night we stayed up until 1:30 painting the front room and getting everything set up. Wednesday I spent all day cleaning and getting everything in place. I was amazed at how Charlie just took it all in. He didn't throw any trantums, but he was really cranky. I helped him work through his problems, and explained why things the way they where and why it needed to be this way, and then it happened.....
We had our first two way converstation....
We were all sitting on the floor playing. Charlie was sitting behind MeMe, when he started to push her forward.
It went like this....
Mommy: "Charlie, don't be mean to sissy, You need to be nice!"
Charlie: Stoped pushing MeMe and then got this severe consentration look on his face .. "I mean?"
Mommy: Yes you are being mean. You can't push sissy like that! You can hurt her! You need to be nice, not naughty."
Charlie: Looking a little confused stood up and said "I don't know!" and walked away.
In the moment I wasn't realizing what was happening. I talk so much to Charlie that it didn't register that we were acutaly having a converstation. When he walked away, it had clicked on what just took place. I of course called everyone and proclaimed Charlies new words and how he used them in sentences! But of course the rest of the day I couldn't get him to say a single word, but thats okay. It took A LOT of effort to just get what we did, and for that I am so incrediably thankful.
This is a sign of changing times.