Anyone that has talked to me, read my blog or my tweets in the last 2 weeks has probably heard me blab about meeting Sam Felsenfeld , Operation Jack and Train 4 Autsim....For my family and friends, they all know why this is so important to me, but for the small amount (and I mean small...because I'm pretty sure just my family and friends read this) of people who read my blog and follow me on Twitter you may not know why I've been talking about this for the last 2 weeks pretty much daily. So on a night when I'm not in the best mood and feeling kinda grumpy, I thought about a little guy who never fails to make me laugh, smile and realize my life is not so bad. I'm talking about my little brother Zach, who also happens to be autistic.
Zach was adopted when he was 3 years old. He was not verbal...maybe 3 words that consisted of ouch, that hurts and don't touch me. We were told that our family was their (the state's) last effort, if our family didn't work out for him then they would place him in an institution because they didn't know what else to do with him. It makes me so sad to think of Zach (or any kid for that matter) living like that. For the last 9 years my parents have exausted every Doctor and therapist possible. For a while we described him as the boy in the bubble. It was like he was in his own little world, doing whatever he wanted. It was a 24 hour job making sure he kept himself safe. For a while Zach's response to pain was delayed so if he hit his head on something it would take him a little while to realize that it hurt. By the time he figured out his head was hurting, he had moved on from whatever he hit it on and did not make the connection between hitting his head on the object and his head hurting. Consequently he often got hurt and would put himself in dangerous situations without realizing it. There was the time we were all at dinner and he left to use the bathroom upstairs....a few minutes later he was looking down at us from the skylight. He had climbed out onto the roof and decided it would be fun to watch us eat dinner from above! Yikes! Not. Fun!.
Zach started Kindergarden in diapers when he was 5 and did 2 years of kindergarden. We never know what to expect from him, he has grown so much in the last 9 years we just don't know what he will be like tomorrow, next month or next year. There was a time we couldn't take him to the circus, to a fireworks show or even a loud concert or event. All of these things were too stimulating for Zach and put him in a lot of pain. He would scream for the noise to stop or to make the lights go away. He would cover his ears, shut his eyes and bury his head in your lap. All we wanted as a family for him to was to enjoy everyday things, just like a little boy should. This past summer we took him to a Portland Sea Dogs (AA of the Boston Red Sox) and he sat through the whole game and was even cheering on the players ("Sttrrrrikkkke you're outta here" he would say). It's a good thing he is starting to enjoy baseball as we are a very big baseball family. The only problem is my dad and husband are both Yankees fans and I am a Red Sox fan. Zach says he is "a both of them fan". We told him this is not possible...he hasn't grasped that concept yet!:-)
Hadlock Field Summer 2009
The summer before, this is something he would have never been able to sit through. He would have lost interest somewhere along the 2nd inning and we would of had to leave early or he would of annoyed some diehard fan trying to watch the game. He loves to strike up a conversation with ANYONE, the cashier at the grocery store, the person in line in front of us where ever we happen to be, the dump guy or mailman. You name it, he will talk to you...alot! The problem is, his speech is mumbled most of the time and for those who aren't around him a lot, he's difficult to understand at times. So when he talks to strangers we often get a lot of what I like to call the "nod and smile". When he was 5, it was cute...now that he is getting older, people don't take to him striking up a conversation with them as nicely as they did a few years ago.
The progress Zach has made over the last few years is amazing. I can't say enough about my parents and all the trial and errors they have been through with doctors. Today he is in 6th grade at the local public school. He loves science and really understands it, he will just give you the answers but in a round about way sometimes. His class is slowly realizing that he's not dumb, and he does know what he is talking about. He is just very simple about it. In class one day the entire class was asked "What is DNA?". None of his classmates answered and he raised his hand and simply said "It's what makes you, you.". He doesn't write much except his name and his reading is at a 1st grade level. He struggles with it and he works on that in the special ed classroom. In order to keep up with his class, he has books on tape which he will listen to and understand and that way he can keep up with what his classmates are doing. He just got an ipad through the school which has a lot of great apps that he can use. He has difficulty using a regular computer keyboard and can navigate the ipad touch screen much easier.
Just this year he has started to care about not being with his class all the time. He wants to do everything they are doing and has a hard time being pulled out to work on math, reading or writing. He is the manager of the school store and works on his math skills there. Adding up things on the calculator, counting change etc...he also works on his writing when he fills out gift certificates that teachers will by for their students at Christmas time.
Lately he has been having a difficult time experssing his emotions...he's doing a lot of biting on his own arm (and even bit a kid at swimming a few weeks ago. Although he states "I didn't use my teeth though" and when my mom asked him why he did it he said "Well, he wasn't listening to me so I had to go to plan B"...he is KING of one liners and makes it so hard to be upset with him for any length of time), banging his head on things or with his fist. That is so hard to watch because I can't imagine the pain he is in and can't seem to get his words out so we can help him. My mom get so upset, she feels like she has done everything she can and doesn't know how else to help him. Zach can tell when he is not feeling well but at that time can't express himself. Later on he will tell you "my brain (or body) feels jumbly". What is so hard about this is that there is not a pill he can take to cure things, there is not a surgery that will fix it. He didn't ask for this and all he wants to do it fit in with the rest of his classmates. He is very social at school but doesn't have any friends to play with outside of school. He spends the majority of his weekends playing by himself (which he enjoys) inventing things, making things out of "parts" that he finds around the house. I just think back to when I was in 6th grade and the things I was doing...he is far from that and may never get there.
My parents found a naturopath doctor two years ago who is a DAN (Defeat Autism Now) doctor. He put Zach on a diet called the Specific Carbohydrate Diet, which is primarily protein, vegetables, and fruit. It eliminates any food that feeds yeast in the gut. The basic premise is that these kids have an excess of yeast (fungus) in their guts that leaks out into the blood stream and gets into the brain, severely hindering brain function. Deprive the yeast of food and destroy what is there and the child begins to come out his fog. This is a simplistic explanation, but we have seen such huge improvement in his brain functioning since then it is amazing. His doctor also prescribes multiple supplements to support his immune system that keep him as healthy as a horse. His teachers are hoping to eliminate his need for a one-on-one next year, a full two years before we were expecting. This biomed approach in not inexpensive, since health insurance does not pay for any of it. It costs my parents close to $500 per month, but to see Zach improving is worth it.
So who knows what tomorrow will bring for my little buddy. All I know is that if he can work this hard everyday of his life, I can work hard to get myself into marathon shape. When I met Sam and really started to understand what Operation Jack and Train 4 Autism was all about I KNEW I wanted to help. So long story, kinda short (believe me, I could go on and on)...THIS is why Operation Jack really hits home to me.
If you missed my last post here is what I am going to do...
1. Start a Maine chapter of Train 4 Autism (I've inquired about it...still waiting to hear back)
2. Get a team together (also working on that. Wanna join? Let me know!)
3. Raise $5000.00 (although I'm secretly...err, not so secretly hoping for more)
4. Oh yeah, and run the October 2011 Maine Marathon....just a minor detail in all this...it will be my first one!!
If I can accomplish 1-3, Sam has said he will come run the marathon with us. Yeah that's right, he's gunna come from CA to ME to do this! Pretty sweet I must say!
Why so long before the marathon? Minor detail #1 Sam is running 60...or maybe 61 marathons this year so he didn't really have time in his schedule to come run this year and minor detail #2 I'm currently 6 months pregnant, I didn't think I'd be in marathon shape 8 weeks after having baby Tyler. So 2011 it is!
I hope after reading my story that you are inspired to donate....and guess what! I'm giving you that chance, RIGHT NOW!:-) You can donate here and start us on our way to meeting/crushing (am I getting too ambitious here?) our $5000.00 goal. I'm calling this little adventure Operation Jack meets Project Zach. Last fall I ran a 5K to raise money for Making Strides ( read about that here), which was started by a mother of a child with autism at Zach's school. The goal is to raise enough money to build an OT gym for all of the autistic kids at Zach's school. My hope is that 85% of what we raise will go to that and 9% will go to Train 4 Autism, the rest will go to Kintera for all that fun stuff like credit card fees:-) I also want to spread the word about Operation Jack. My next goal ( yeah I know, I'm not even close to completing this one yet...whoops!) is to really help support and get the word out about Operation Jack. Seriously, without Sam's efforts I would not be inspired/motivated to do this. I know it's going to be a lot of work, but thats why I have such an amazing family (they already know they are along for the ride) and great group of friends ( Danielle, are you ready for this!?) who want to help out!
So with tomorrow being the 4 year anniversary of my very good friend Alisha's dad passing away in a terrible motorcycle accident, I'll leave you with Claude's motto "Live Life Full Throttle". That's what I plan to do. No regrets.
Some pictures and a video to enjoy...
Just hanging out in the car
Walk for Autism
Classic first fish picture!
Zachie and I hanging out on the couch
Just another day in the world of Zach!
Fly Swatter Jeopardy- This was a game that Zach is playing in his mainstream classroom after reading (or in Zach's case listening) to a book in class. Zach loved the concept of "ringing in" with the fly swatter! This is something I never thought he would be able to do! I'm so proud of him!