My Little Rock Stars

Today, on impulse, I decided to get the boys' pictures done. As soon as we got there, Brian was not having it. We actually got some great shots by bribing him with a lollipop. But one of my faves was this one....



...he's actually having a major yell at this moment, to let the whole world know he wasn't happy with our outing. Yet, it came out looking like I have two little boys rocking out together! Brian reminds me of a little Ray Charles! Love it!

Bullies

Well I knew it would happen someday. Not sure I could ever prepare myself for it. Even though I've had lots of stares, had even some pointing, and have had questions about Brian or his behaviors, I don't think I was ready for this.

The mean, name-calling, ill-informed young children. They are mean. Today we were hanging out in the Resource Room waiting for school to get out as I had a meeting with Brian's teacher. Some of the bus kids were waiting in there to get on the bus. I was talking away with the special-ed director when I look over and I see Corbin kind of trapping his little brother into a corner of the room with a bunch of kids gathered around him. I excused myself from the conversation and went over.

"Corbin, what are you doing?"
"I don't want those kids to see my brother."

Kind of confused. Didn't really know what was going on. I went and grabbed Brian's hand and pulled him out of the corner (he didn't mind being there, by a window, as he was mesmerized by the rain) and started to tell Corbin we needed to go to meet with the teacher. Corbin wasn't moving from his position in front of his little brother.

One of the boys, that was gathered around, looked at me and said, "Are you his Mom?" I replied that I was. He looked me straight in the eyes and said, "I don't like him," pointing at Brian, "He's weird and scary!" Corbin yelled, "No he's not. He's my brother!!" And I told the little brat to get away.

Okay, no I didn't, but honestly that was my innermost reaction. Instead I said, "He's not weird, he has autism and sometimes he acts differently, but he's not weird or scary." He said, "No! He is just weird! He's just a baby, why does he come to school!" I looked at him and said, "He's a big boy, just like you." Then I walked out pulling my children, behind me. One child oblivious, the other fuming, steam coming out of his ears.

I've heard of mama bear reactions, but Corbin definitely had a brother bear reaction on this one. Later in the car I talked to him about it and he told me that he hates it when kids "stare and stare and stare at Brian and say mean things that aren't true". We talked about how some people don't know about autism and so sometimes they say or do hurtful/mean things. I told him it's hard to not feel angry when people do that but sometimes we just need to teach them a little bit about autism and then they would hopefully treat him nicely.

If only, it could always be that easy.

Reality

Two weeks ago the boys' school had a Family Literacy Night. I love when our school and community does events like this as I think it is important for children (and parents) to know how important learning is and not just during regular school hours. I love attending these type of things with the boys.

Each classroom in the school had a different story being told, Corbin chose to go in his regular classroom. Corbin wanted to sit right up front and I tried, but it wasn't possible with Brian. He spotted a crate of toy vehicles and he had picked a tractor to play with. He went to the back of the classroom and started rolling the toy tractor the length of the teacher's table, over and over again, while making a lot of different sounds. I sat in a chair at the back of the room to make sure he didn't decide to escape and to give him the "quiet signal" but I told Corbin he could sit at the front of the room if he wanted.

It was going alright, Brian & I were getting a few stares from some of the parents who don't know us, but I've really become quite fluent at being able to not care about the stares anymore. Then another little boy, about 18 months old, and his mother joined us near the back of the room. He was being a bit fussy and his mother decided to pull out three toy swords from her bag to keep him occupied. Well, Brian wanted in on that. The other Mom looked at me and said, "Oh, it's fine, he can play with them." I wanted to reply, "No, actually, it's not alright." But I thought what could be the harm?

Well, I didn't know that my youngest son is a swordsman in the making. He had one hand on his hip and the other going all directions trying to swordfight with the other little boy, whom really had no interest in the swords. I took the sword away before he caused a bloody nose and decided to try to hold him on my lap. Obviously he didn't like this idea and started crying/screaming.

About the same time, Corbin comes over and he just wants some attention. He wants to be able to listen to the story with his Mom, just like all the other boys and girls his age are doing. He wants us to laugh together at the funny parts, he wants me to answer the questions the reader is asking, he really just wants to have a *normal* moment with his Mom. And I want nothing more than to give him that- but I couldn't at that moment. I ended up having to walk Brian up and down the halls while Corbin sat with one of his best friends and his friend's Dad.

We made it through the evening, but it's really had me thinking these past couple of weeks. It makes me think about what things I'm doing for myself and what I'm doing for Brian. I want Brian to go to everything like any other child would. I want him to participate in sports, reading nights, and musicals. But who am I to say that is what Brian wants? Brian didn't seem to care one miniscule bit if he was at that reading night. I'm the one who cared, not him. I'd like to think it would help him gain an interest in literature, but who am I kidding? I use to think I would feel bad if I just brought Corbin to things like that and excluded Brian. Now my whole mode of thinking is starting to change. Brian wouldn't mind, he would be so content to visit with an aunt or a grandparent for an hour while I took Corbin to things like this. And Corbin would LOVE it. He'd love to be able to get through an event like that with his Mom, have his Mom's full attention, be able to actually participate, and not have people staring at his little brother throwing the tantrum at the back of the room.

It's hard to let go of the dream I have of us being able to do all these things as a family- the dream that has Brian being treated like any other kid and acting like any other kid. In reality doing things differently would really benefit every person in our little family.

New Appliances

I got a new stackable front-loading washer & dryer set and have been so excited about them. I kept joking how lame and old I must be getting to be so enthusiastic about new appliances.

Yet, I think someone else in my household enjoys and loves them more than I do.



Brian.

He can see inside them. He can see it spin! He loves it. He sits and stares. He stands up and flaps. He knocks on the window when it pauses so it will go again. So far, they are a never-ending (since our laundry is never-ending) source of entertainment.

Opinion Piece.

Pulling out my soap box. Ahem.

Being an ed tech at a public school does not mean you are just a babysitter. You are not just there to make sure the child does not hurt themselves or hurt others. Sometimes that isn't even an area of concern at all for the child. You are there to help them interact with the academic and social world by finding creative avenues to get him involved. In music class you might find out he can memorize a song one time after hearing it if you just made eye contact with him and made sure he saw your lips when you were singing. He may be able to do simple addition but in a different format than the rest of the class. Don't just walk around with him holding his hand when he can actually walk down the hall by himself. If you want to hold his hand engage him while you are walking with him. Don't talk about him like he's not even there. He may not contribute to the conversation but I bet he understands close to everything you are saying. I don't want to lump all ed techs into this category, because I have met some wonderful ones, but I have seen my share of cruddy ones too. If you are looking for an easy job that doesn't take a lot of initiative, creativity, and motivation then you should apply elsewhere.

Putting soap box away now.

The Other Side of the Wakefield Debate...

If you've been watching the news lately, I'm sure you've seen the latest drama regarding Dr. Wakefield. Once again discrediting him and the one show I watched, discrediting us parents who KNOW something happened to make our children regress in front of our eyes.

I recieved an email today from Generation Rescue, a statement from Jenny McCarthy & Jim Carrey regarding the recent events. I wanted to share, so it's copied and pasted below.

Los Angeles, February 5, 2010


Dr. Andrew Wakefield is being discredited to prevent an historic study from being published that for the first time looks at vaccinated versus unvaccinated primates and compares health outcomes, with potentially devastating consequences for vaccine makers and public health officials.

It is our most sincere belief that Dr. Wakefield and parents of children with autism around the world are being subjected to a remarkable media campaign engineered by vaccine manufacturers reporting on the retraction of a paper published in The Lancet in 1998 by Dr. Wakefield and his colleagues.

The retraction from The Lancet was a response to a ruling from England's General Medical Council, a kangaroo court where public health officials in the pocket of vaccine makers served as judge and jury. Dr. Wakefield strenuously denies all the findings of the GMC and plans a vigorous appeal.

Despite rampant misreporting, Dr. Wakefield's original paper regarding 12 children with severe bowel disease and autism never rendered any judgment whatsoever on whether or not vaccines cause autism, and The Lancet's retraction gets us no closer to understanding this complex issue.

Dr. Wakefield is one of the world's most respected and well-published gastroenterologists. He has published dozens of papers since 1998 in well-regarded peer-reviewed journals all over the world. His work documenting the bowel disease of children with autism and his exploration of novel ways to treat bowel disease has helped relieve the pain and suffering of thousands of children with autism.

For the past decade, parents in our community have been clamoring for a relatively simple scientific study that could settle the debate over the possible role of vaccines in the autism epidemic once and for all: compare children who have been vaccinated with children who have never received any vaccines and see if the rate of autism is different or the same.

Few people are aware that this extremely important work has not only begun, but that a study using an animal model has already been completed exploring this topic in great detail.

Dr. Wakefield is the co-author, along with eight other distinguished scientists from institutions like the University of Pittsburgh, the University of Kentucky, and the University of Washington, of a set of studies that explore the topic of vaccinated versus unvaccinated neurological outcomes using monkeys.

The first phase of this monkey study was published three months ago in the prestigious medical journal Neurotoxicology, and focused on the first two weeks of life when the vaccinated monkeys received a single vaccine for Hepatitis B, mimicking the U.S. vaccine schedule. The results, which you can read for yourself HERE, were disturbing. Vaccinated monkeys, unlike their unvaccinated peers, suffered the loss of many reflexes that are critical for survival.

Dr. Wakefield and his scientific colleagues are on the brink of publishing their entire study, which followed the monkeys through the U.S. childhood vaccine schedule over a multi-year period. It is our understanding that the difference in outcome for the vaccinated monkeys versus the unvaccinated controls is both stark and devastating.

There is no question that the publication of the monkey study will lend substantial credibility to the theory that over-vaccination of young children is leading to neurological damage, including autism. The fallout from the study for vaccine makers and public health officials could be severe. Having denied the possibility of the vaccine-autism connection for so long while profiting immensely from a recent boom in vaccine sales around the world, it's no surprise that they would seek to repress this important work.

Behind the scenes, the pressure to keep the work of Dr. Wakefield and his colleagues from being published is immense, and growing every day. Medical journals take extreme risk of backlash in publishing any studies that question the safety of the vaccination program, no matter how well-designed and thorough the research might be. Neurotoxicology, a highly-respected medical journal, deserves great credit for courageously publishing the first phase of this vaccinated monkey study.

The press has been deeply misled in the way The Lancet retraction, and Dr. Wakefield's mock trial, have been characterized. Led by the pharmaceutical companies and their well-compensated spokespeople, Dr. Wakefield is being vilified through a well-orchestrated smear campaign designed to prevent this important new work from seeing the light of day.

What medical journal would want to step in front of this freight train? Moreover, why now, after 12 years of inaction, did The Lancet and GMC suddenly act? Is it coincidence that the monkey study is currently being submitted to medical journals for review and publication?

We urge the media to take a close look at the first phase of the monkey study discussed above and to start asking a very simple question: What was the final outcome of the 14 primates that were vaccinated using the U.S. vaccine schedule and how did that compare to the unvaccinated controls?

The U.S. vaccine schedule has grown from 10 vaccines given to our children in the 1980s to 36 today, perfectly matching the dramatic rise in autism. The work of Dr. Wakefield and his colleagues deserves to be shared with the world to further, rather than censor, scientific progress.

Empathy

Amid all the imaginary gun-play, crude fart & burp jokes, and trading Bakugans I catch glimpses of the man that I hope my son will turn into one day.

Corbin went to see Avatar with one of his friends and Josh. At one point in the movie the "bad guys" come in and destroy the Na'vi's Hometree- a gigantic tree that is made up of intricate living quarters that is inhabited by an entire clan. The special effects are amazing in this scene, things blowing up, chaos, all the makings of any boy's favorite movie. Corbin's friend yelled out, "This is awesome!", obviously taking in by all the afore-mentioned effects. My young man retorted, "That is NOT awesome! They ruined their home- that is horrible!", all while making little sniffle sounds from his nose.