It's Not Fair!

I hear that line from my son a lot. I hear it when I lie Brian down in his bed to brush his teeth instead of having him stand at the sink. I hear it at dinner when Brian just needs to touch the new food to his tongue, where Corbin has to actually eat one bite. I hear it when Brian goes to therapeutic horseback riding.

On a bad day I'd like to snap back, "Yeah, you're right. It's not fair that your brother can't talk, that he can't tell me he loves me, that certain foods give him rashes and really bad stomachaches and leaves him so he either can't poop for days or has explosive diarrhea. It's not fair that sometimes things are so wrong for him that he needs to physically hurt himself to feel better, it's not fair that he doesn't have any friends, and that he might never get married or have a family of his own." And on a tirade like that I could go on forever and forever.

But on a good day I agree with him. It's not fair for my little "neurotypical" boy either. It's not fair that sometimes we can't go to activities that Corbin loves because I'm the only adult and I just can't handle Brian by myself at events like those. It's not fair that Brian has no respect for Corbin's toys and has been known to break them in the past. It's not fair that he has a brother, that does love him very much, but doesn't play any games with him like a typical brother would. It's not fair that Corbin's mom has to put so much time and energy into Brian everyday.

Autism is not a fair thing. It's not fair for anyone involved. Growing up one of my mother's lines was "Life's not fair, get used to it", whenever we'd complain about some insignificant problem. I never realized how true that line would be. And that's what we've done- we have just learned to get use to it. Sometimes when things seem like they haven't been fair in a while for my little C I make sure that he gets some one-on-one time with me, because he definitely deserves it. I love him so much and I want to make sure he always realizes that, even when things are not fair.

The Horse Boy

Last summer I spent a week devouring the book, The Horse Boy, by Rupert Isaacson. It's a story of a father who makes a crazy decision to combine his son's unique connection to horses with his own interest in shamanism and take his wife and his autistic son, Rowan, on a trip to Mongolia to see if it will help Rowan came out of his own isolated world.

The outcome of the story wasn't what held me captivated but just the journey. The journey motivated by a father's deep and intense love for his child. I've been waiting and waiting for the documentary to be released and was so excited to see that once it was released it was also available for instant streaming through Netflix.

Though the book was better than the movie (isn't that always the case?), it was still amazing to watch and I'd recommend it to anyone. I know the saying goes, "You've seen one autistic kid, then you've see one autistic kid", but when I watch movies with children with autism I can always see at least parts of Brian in those kids. The parents' journaling through the movie brought me to tears several times as long as the interviews with professionals in the field, of course anything like this brings me to tears in seconds usually.

So, if you have Netflix I highly recommend adding this to your queue, and if not serach high and low to find it- you won't be disappointed.

Walk for Autism 2010

What another great success for Team Brian! We ended up having 43 walkers on our team and raising well over a thousand dollars for the Autism Society of Maine. We had a wonderful time, as we do every year. I put together a slide show to share our day with you, it's a bit psychedelic but Brian seemed to like this format so I went with it! Enjoy!

Out of the Mouths of Babes

Corbin was looking in a car flyer and looked at me and said, "I really don't like Toyotas Mom". I said, "Oh, really, why's that?" and he replied, "They have bad safety, haven't you seen it on the news!?"


The other morning he was pretending his legs didn't work and he wanted me to get a spoon for him. My jaw dropped as I asked him what he possibly did to his legs and he replied with a sigh, "Ohhh, it's a long story." And left it at that.

Today walking into Uno's, Corbin gives me a wink and does the little gun movement with his hands like a "Right atcha" type of gesture and told us all, "Sometimes when a boy likes a girl that's what he does to them."

Today we were stopping to get Brian some scrambled eggs and from the back seat we heard, "Where we going?", both Josh and I at the same time said, "Corbin we already told you we need to get something for Brian to eat." My sister, Erinn, who was in the back seat, said, "That wasn't Corbin, guys. That was Brian". I immediately realized the voice did come from directly behind me but it was so clear I just assumed Corbin. It was quite amazing actually.

Things That Spin

Brian's birthday is only two weeks away- my baby will be six years old!

In years past we've consistently had a Thomas or Disney Cars themed birthday- as they are his loves and I don't see them going away any time soon. This year, we're trying something a little different.

This is his day. It should be the perfect day for him. So what did my crazy mind come up with? We're going to celebrate everything Brian loves. Everything that makes him "happy yell", jump, laugh, spin, rock, and flap. I'm going to let him stim and perseverate. We're having a "Things That Spin" birthday party.

I'm either in for a day that is just plain AWESOME and makes Brian the happiest boy on earth or a day that is full of sensory overload and meltdowns. I think it's obvious which kind of day I'm rooting for.

My big presents for him this year are:

A Giga Ball


and a Fun Roller



Both of these gifts are meant to fit in with our spinning theme and hoping to get him to do some social participation with his brother and cousins while he's outside- rather than just his isolated running in circles or rolling down hills.

As cool as those toys are (or I think they are), we have something that has already beat those out. I bought a Lite Brite Flash Art (an updated, cooler version of our Spin Art we had growing up) to use as our craft at the party. I opened it beforehand so I could present that as just a new toy at the house instead of overwhelming him with too many new things on the day of his party. We tried it out tonight and I'm pretty sure nothing is going to top it! Not only did he stim and stare (check out the video below) he actually stopped and allowed me to put paper in so he could squeeze paint on- which he did. Then we watched his design spin and then he decided to rub his hands all over it to get some more sensory input and then make hand prints on the blanket! It was a great activity for him and I love seeing him enjoying something different (just crossing my fingers the paint comes out of the blanket!).

Movie Theater Moments

Had a lot of time on my hands as I attempted to take my family to see "How To Train Your Dragon" and thought I should declutter this brain of mine.

*Lying is really a developmental milestone. When you think about it, it takes some serious cognitive skills to do so. Brian decided every time we'd try to sit in the theater to just yell out "Potty!!" because he knows I won't deny him a trip to the bathroom. Yet he never had to go, just didn't want to be in the theater.

*My life is no where near where I thought it would be. Never thought I would sit on the nasty floor in a theater and rock my almost-six-year-old boy back and forth. Really, who would think that would be a part of their future? It calmed him for a while and I actually got to watch part of the movie though!

*Sometimes I spend too much time in my head. Especially if it's just me and Brian. We spent most of the time in the lobby while the other half of the family enjoyed the movie. Brian is infatuated with the pool table out there and the cue ball and 8 ball that he can play with without adding any quarters. Over and over and over again he put them in different pockets and run to see which one would come out first. There's only so many times I could say, "Black", "ball", "white", "my turn", "your turn", etc. with absolutely no response from him as the balls were far more entertaining than my speech. So I resorted to sitting on a bench staring off into the distance. I probably looked like a zombie. Seriously.


But this morning, when he came into my room, gave me that genuine smile of his, jumped into my bed, and wrapped his arms around my neck. Those are the real moments that make every other surreal moment worth it.

Success!

I'm still in awe over how successful our rummage sale was! It wouldn't of been possible without all of my family and friends who spent their weekend trucking, organizing, sorting, and selling stuff, stuff, and more stuff! We had a continuous flow of customers and made more money for the Autism Society of Maine than I ever expected. I can not wait to hand it in along with all our pledges next weekend! Go Team Brian :)

What Follows Awareness?

Will you listen to this?


Sure this month is Autism Awareness Month but just like I was saying last year, awareness really isn't enough anymore. I think people are aware. Studies are showing numbers as low as 1 in 91 children being affected, I sure hope people are aware.

So what's next? It's finding answers! Answers to WHY the numbers are rising, answers to how to treat this disease effectively, and answers to what is going to happen to all of our children when we are gone! When is the action going to follow the awareness? Not until the numbers are 1 in 50? Give it a couple years at the rate we are going, then we'll be there. These children are not going to go away, this problem is not going to just disappear if we don't pay it enough attention. Don't believe me? Just look at the projected number of adults and cost of caring for those adults with autism over the next few years.

I'm sure when we are gone and our children become a financial burden to the government we will start getting more attention- but why, do our children have to wait until then?

Fundraiser

I had this crazy idea to have a big fundraiser before our annual Walk for Autism event so we could donate even more money to the Autism Society of Maine. Somehow that crazy dream has become reality.

Tomorrow Team Brian is holding an indoor (and hopefully outdoors as well) giant rummage sale along with a bake sale. We're having free appetizers supplied by our local Applebees, free coffee, and free face painting for the kids. We have tons and tons of stuff that has been donated to our event and I'm positive everyone will find something they just have to have!

This wouldn't of been possible without support from my friends and family. Thanks for putting up with my insane ideas and pitching in! Love you guys!

And hope to see everyone out there in blogging world, that don't live too far away, at our event tomorrow. It's being held at the MacDougal School on Broadway Street here in Rockland. It starts at 9 am and is going until 2! Come support a local organization!

Zip A Dee Doo Dah

One of my biggest concerns with Brian is that he doesn't always show his true potential to everyone, especially teachers or therapists. At home he always is doing something or other that just amazes me, but at school they have no idea that he has any knowledge in certain areas.

I went in the other morning and asked them what the songs were that his class would be performing for the Spring Musical. I wanted to know so I could practice them with him at home. They told me the song was Zip-a-Dee-Doo-Dah and that they had only practiced twice at that point in time and so far he hadn't sang any of it (in fact they just heard him sing along with a song for the first time a couple weeks ago). I had never sang the song with him before but I had a feeling if he had heard it twice already he knew it.

I found him in the day treatment room and I went in to visit. He was having a play break and I asked him, "Brian, are you singing Zip-a-Dee-Doo-Dah in the musical?" He smiled at me and burst out in song. He sang the whole song and then gave a very exaggerated finale with his hands spread out wide.

I just wish he'd share those moments with everyone, so they could see his true potential as well!

The Biggest Debate

Part of the biggest controversy tied to autism is vaccinations. I'm not a scientist, I haven't done my own expirements, but I have seen what I've seen and read what I've read and have my own beliefs about what is happening.

I think a large part of our population thinks Moms like me are crazy, that we are not educated, we are making wild accusations, and we just want to blame someone. I think there are a lot of myths not only surrounding vaccinations but surrounding what we as mothers and fathers are claiming.

I want to clear the air a little. I can't speak for all parents and I wouldn't want to because I know everyone has different opinions but here are MY opinions.

First, I do NOT believe vaccinations alone cause autism. I believe that vaccinations contribute to the onset of autism. I think there is definitely a genetic component and that most of the kids with autism are predisposed to autism but environmental factors are the proverbial straw that broke the camel's back.

The CDC has said that the reason parents are blaming vaccines are because the typical signs of autism show up around the same time as the 18 months shots. If these kids simply stopped development, like commonly seen in MR and other developmental disorders where they just hit a plateau, then I could see this. But most of these kids, including my own, don't simply stop developing- they REGRESS. They lose skills they already had and their entire personality changes.

Vaccinations aren't bad for everyone, obviously! Vaccines have undoubtedly saved many lives. I never have said they need to just stop vaccinating. My argument is they need to space the vaccinations out more, break up the 3-in-1 shots, make sure kids are at their optimal health when giving them, take out unsafe ingredients, and take out the vaccinations that really just aren't necessary. They need to realize that vaccinations also are not a one-size-fits-all. People react to different medications all the time- why is it impossible that some people's immune systems simply can not handle the vaccinations?

What about all the studies? Everyone loves to tell me that they've heard about all these studies that show NO link whatsoever so we need to move on. Unless you've read these studies you don't know what you're talking about. Visit Fourteen Studies and read quotes from Dr. Bernadine Healy (former director of the National Institute of Health) claiming that no conclusive studies have been done on this subject. You will find each study has been biased, had no conclusive result, and they have never compared vaccinated children to unvaccinated children. And the Dr. Wakefield controversy, where he was recently discredited? I stand by him and find it extremely convenient that this big discreditation fiasco happened right before he was about to release his studies on vaccinated vs. unvaccinated primates.

I don't expect to change other's opinions- this seems to be a debate that people are deeply ingrained on one side of the line or the other. Though my biggest critic, our mainstream pediatrician, who scoffed at me three years ago, now agrees it is best for Brian to no longer be vaccinated. What I do want to do is increase awareness on this- a lot of people not involved in the debate, do not know the details. What I do know for sure is that autism has increased exponentially in the past decades and it doesn't seem to be slowing down. Something needs to be done about this- and it needs to start with fair, unbiased research that are asking the right questions.

Past blog posts that may be interesting reading:

* Autism on Larry King: Transcript
* Brian's Journey With Autism
* When it comes to fighting autism, maybe we should send in the army.

Hint Mama, Hint!

Today while cleaning out our outdoor *stuff* Brian came across their life jackets from last year. It barely fit but he insisted to have it buckled- once it was on he played for about an hour with this ultra-tight life jacket on. I think it's a hint that we need to utilize the deep pressure vest again!

Autism Awareness Month

Happy Autism Awareness Month!

Okay, I don't really ever know how I feel about that line. I'd probably be happier if autism wasn't part of my life and I'm not happy about the crazy increase of autism among all of our children. I'm tired of the government not taking the rise of autism seriously and not putting more research dollars into unbiased studies.

But Autism Awareness Month gets me excited! All the events planned around the country, all the fundraisers, all the exposure this disorder and our children get! The Empire State Building will be lit up blue tonight for autism awareness!! Walks are being held all over the country- including three different locations on April 25 right here in Maine!

So look in your local newspapers, your local ASA chapters, TACA, Generation Rescue, Autism Speaks, etc. and see what is going on in your neighborhood and see how you can help!