Thursday, January 28, 2010

Music does the soul good...

Most people know that kids who are on the Spectrum are good at one thing (or more depending on the kid). Some kids it's electronics, some kids math, some kids art, some kids music. If they are good at it, they are REALLY good.

Charlie has his vices. He is a very visual learner, and generally you only need to show him something once . He is amazing at puzzles and shape sorters. He knows how to work the TV, and DVD player. This drives me insane since he likes to push the on/off button or the play/stop/pause/skip buttons.... and the volume button...

But out of it all the one thing that speaks to charlie the most is music. It has to have a beat, and he must be able to dance to it. He loves to drum out beats on the tables, and strum on my guitar.
We have music time during the day when I either put on music and we dance, or we play the guitar or drum on random objects. This morning he chose that for music time today he would dance to his microphone that plays music.

I seriously need to get this kid into music classes when he gets old enough to go. He is brilliant!

After all you know the old saying "Music does the soul good".... Completely true for Charlie.

Monday, January 25, 2010


This is a rant-Sorry, sometimes you just have to speak your mind...

I understand that there are sicker children out there in this world, and while I know some people think it's comforting to say "it could always be worse!" or tell me that it won't change Charlie from who he is, and that I shouldn't love him any less, It totally isn't comforting. It makes me want to scream actually.....

Really people?? Do you think that I really love my son less?? I know it could be worse, but it isn't. Yes we were lucky, and while you don't see the difference between my son and yours doesn't mean there isn't. You don't have to get up 5 times during the night, EVERY NIGHT because your son is screaming like someone is murdering him. You don't have to read EVERY SINGLE INGREDIENT on a label in fear that your son might get something that causes him to go crazy, and if he does get said ingredient your up until god knows when trying to keep your son from busting up his head because he is slamming it so hard into the walls and floor and laughing. Your not trying to keep him from biting himself, or pulling out his hair. You don't have to listen to the non-stop screaming. And when he does finally fall asleep, you can't sleep in fear that he has given him self a concussion, so your up every 30 minutes checking to make sure he is still breathing. Nor do you have to worry about him being so constipated that sometime you have to help him go, or worry about him having such bad diarrhea that it just constantly leaks out of his poor little bum and causes major sores. You don't have to stick to a strict schedule in fear that if your even 15 minutes off the next 2 days are going to be hell. You don't have to plead with your child to talk to you, to tell you what they want.

You don't go through my personal struggles as a parent watching their child go from a little boy to an animal in less then 2 seconds because there is some noise, or fabric that he is having problems with. Or if he is in pain, and you can't figure out where or why. You don't have to deal with strangers looking at you and commenting on your child and saying things like "Could he scream any louder?" Or mocking him at the check out stand because he is screaming "WE WE WE " because of the beeping noise.

As a person I have given parents those looks of "Can't you control your child?" I now regret every single comment or look I have ever made. I understand now what it's like to be on the receiving end of those hurtful looks and comments.

I tell people Charlie's story not for sympathy or empathy. But for others to understand, be educated and support us. I don't want a "I'm sorry" or the infamous "It could be worse". I want people to ask about him, to really ask. Not just the "hows charlie" because you feel like you have to, but because you really care. If you don't care, then don't ask. simple.

And in case your wondering, Charlie is *the* most brilliant little boy I have ever met. And anyone who meets him, says the same.

Thursday, January 21, 2010

What is normal anyways?

Everyday new challenges arise for Charlie and the family. Each day brings new issues, and new accomplishments. At night when I lay Charlie down in his crib and kiss those sweet little cheeks, I wonder who I will wake up to in the morning. Will Charlie have a good day? A bad day? Will he be lost? Or will I see who he really is...

Ever since starting Charlie on the GFCF (Gluten Free, Casein Free) Diet he has become a new person. I feel like as each day passes we get to meet a little bit more of the little boy who is lost inside that mind of his.

This morning I woke up to the sweet sound of him talking. It wasn't gibberish, or screaming, but rather him singing. I layed in bed and listened a little longer and could make out what he was singing... He was singing the ABC's! Now mind you it wasn't the traditional ABC's. It was the few letters he did know. He knows 5 Letters. A B C D and Y. It only lasted maybe 10 seconds, but it was the most beautiful sound I could hear. His singing soon turned into screams and shrieking. My husband- Brian graciously got up and got him out of his crib. As I layed in bed with our little girl Amelia who had woken up and greeted me with coo's and a big smile all I could think was what the day was going to hold for us. What adventures.

Charlie found an old toy this morning that I thought I had hid pretty good.... obviously I didn't. It is one of those ring toys, the stack-able rings? Well this one is wooden, and is one of his obsessions. Charlie has a few toys that he can obsess over to the point of frustration. And it's not that he is frustrated because he can't do them, he's frustrated because he does them so well, and he just can't stop- any ways back to the wooden stack-able rings- So he found them, and he put each ring on a finger and walked around the house mumbling something in Gibberish. He had reached his bedroom, when he turned around to come back into the front room, when he spotted Amelia. She had one of the rings. I have never seen charlie act the way he did. He has had his fair share of meltdowns, and toy destruction behavior. But this was something different. He let out this scream. I can't put my finger on it, but it was a mixture of frustration, anger, and terror. He ran over to Amelia and snatched the ring out of her hands, leaving her confused and hurt. She obviously started to cry, I picked her up and comforted her. I looked up to see charlie with all the rings on this fingers, smiling, and whispering something. He had this crazed look in his eye. It was like giving a drug addict their drug of choice. It was a very surreal moment.

It's moments like that, that slap me in the face. Its a slap of how our life isn't normal, and how it never will be normal. I won't have the little boy who plays with his sister, then as they grow up he picks on her, and then protects her. But I'm okay with that because our life with Charlie is a blessing in disguise.

Charlie has taught Brian and I to live in the moment, and has also taught us how to have a great deal of patience. I would never give up our life in a million years. Even if someone offered me a normal life, After all what is normal anyways?

Wednesday, January 20, 2010

Officaly Us

Since July 22nd 2009 we have been working with Early Intervention for Charlies developmental delays. We have been having different therapists coming into our home and doing observations on Charlie to see if he met the criteria for ASD- Autism Spectrum Disorder. His therapist- Mary comes out twice a month (every other week) to "work" with Charlie. In reality it's just play. Trying to teach him to go from one object to the next.

On January 19th 2010 the ESD officially Diagnosed Charlie with ASD. We are now in pursuit of a medical diagnosis from OHSU.

Through out these months none of our questions are getting answers, just more questions. I know that some questions will never be met with an official answer though the ESD, So we are venturing into the medical side, which scares me to no end.

I do not trust most Dr's. and for good reason too. I believe that Charlie is the way he is today because of a Dr. Not making the correct decision. In the end Charlie was the one who paid dearly. For those who are reading this, that know Charlie- you already know this part of the story so you can skip it. For those new to our life, read on!

A little back ground info.

Through out my pregnancy with Charlie I was really ill. Could hardly keep anything down, constantly throwing up. When I had Charlie, we solely relied on Dr's. and Nurses to tell us what is best for our son. Charlie did get the HepB vaccine at birth, and every vaccine until the age of 4 months. I had feelings of not wanting to give him so many at one time, but because the Dr. charlie saw and the nurses reassured me that nothing would happen, I threw caution to the wind, and believed them.

When Charlie was 4 months old he got his scheduled Vaccinations. I asked if it was safe, since he was just getting over a cold, and was reassured that he would be fine, and just give him Tylenol for any discomfort. This was the point in time where I should have grabbed my baby and ran. But I didn't. I stayed. They injected the poison into his body. That night charlie was extremely ill. He got Vaccinated on a Friday and that weekend was hell. I remember calling and talking to the on call Dr. and they said to bring him in on Monday. From Friday to Monday his head grew 2 cm. We found this out at the check up apt. on Monday morning. Our ped. was concerned and we went to the hospital to get a CAT scan done because there was concern of hydrocephalus. Nothing was found. After that pivotal moment in time Charlie battled for his health. Every week he had a different illness. He either had Pneumonia, or double ear infections. The kids was always on some sort of Antibiotic. From 4 months to 9 months we had a standing weekly apt with his Dr. because there was always something wrong. Every Wednesday we went in. Every time I went in, I asked about vaccine reactions. During his well child visits I declined all Vaccines and would question reactions and tell them I felt the Vaccine did this to Charlie. The Dr. Assured me it wasn't the Vaccines. "The Risks are low" she would tell me. My answer? "Just because they are low doesn't mean it can't happen."

At around 9 months Charlie's Dr. left the practice, and we weren't able to follow. This was a blessing. We got a new Dr. for Charlie, and things started to improve. The Dr. agreed that it was a Vaccine Reaction and Charlie's healing began. In January of 2009 Charlie's Dr. -Dr. Mooney, led on that Charlie should get evaluated through the local Early Intervention Program for his delays. At that time I was 6 months pregnant with our second child- a girl- and going through school. I promised her once I had the baby and was out of school (Baby was due in April, School was done in June) I would have him Evaluated. Each Visit she would ask if he had been evaluated yet, the answer was always no. My husband Brian Finally called in June and got Charlie in for Evaluations.

It wasn't until after we had our daughter did we realize how much we missed out on Charlie's baby days. There are moments when we look at our Daughter now- who is 9 months old and is saying Mama- and we are so incredibly happy that she is growing and functioning, but also sad because we never got to go through these things with Charlie. It puts his life into perspective. Our baby days with charlie were full of fear, anger, sadness, and confusion. Don't get me wrong there were defiantly happy and joyful moments, but the majority of his babyhood was spent sick, and fighting off illnesses, that he shouldn't have gotten....

Through out this ordeal I have been able to grow stronger, and stand up for what I believe happened to our son Charlie, and will continue until the day he is able to stand up for himself.

This is a blog about Charlie. About his life, his struggles, his accomplishments and our struggles and accomplishments as a family.