Friday, April 30, 2010

My little (er, not so little anymore) Buddy!

I'm not so sure that blogging when I'm grumpy and not in a good mood is the best idea...but whatever, I'm hoping this will make me feel a little bit better...we'll see...I had been working on another blog, but I think I'll save that one for another day.

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 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 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
Six Flags

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!

Wednesday, April 21, 2010

so good, so good, so good!

It's only taken me a week to write this darn blog...but here goes! You might want to go to the bathroom, get a big bowl of ice cream, a cold beer and sit back and relax. This will be epic.

A few months ago I realized that I would have April 19, 2010 off from work...since I worked the weekend it meant I had the Friday before off and the Monday after off. As soon as I realized that this was Marathon Monday I called Danielle to see if she was up for making the trip south with me to watch the Boston Marathon (um duh, dumb question!). After watching Chicago and New York online, I needed to see Boston live! We recruited our friend Melissa and headed south via Concord Tailways and headed to Boston.

We arrived at South Station at 9:30, took the T to Arlington and ended up blocks from the finish line. We had told some people we are following on Twitter that we would be near the finish line so we ventured out to find a good spot. To our surprise the finish line was not mobbed, packed, or difficult to get to. We were pumped that we would be able to get front row spots right along the fence and feet away from the runners.

We ended up camping out here, right about mile 26.something. To the left of us we could see the finish line. It's here where we started making all of our friends ( pretty much everyone was "our friend" that day).

Here is our new friend Tom, one of Boston's finest Police Officers. Tom kept us company for the 6 hours we were standing out there. I'll still call him my friend today, even though he wouldn't go get us french fries from across the street (not so fun fact: i really love french fries...i mean really! Being 6 months pregnant and smelling them all day and not having any was not. fun.). Tom said he would meet us in the same spot next year...we'll see if he shows!:-)

We hadn't been standing there too long before the wheelchairs started to come. I can't believe the strength these men and women showed fighting all the way to the finish. We noticed that many of them had black marks on the back of their arms from where the tire had been rubbing against them...for 26 miles! um, ouch?

At last the runners started coming.
First place for the women was Teyba Erkesso with a time of 2:26:11.

First place for the men went to Robert Cheruiyot of Kenya with a time of 2:05:52. As he came down Boylston Street he turned to look and see who was behind him only to find he was all alone. He crushed the course record (which I think he had previously set?).

Annnnd then "our friend" Ryan Hall came cruising down Boylston, good for 4th place (2:08:41)

Just behind him in 5th place was the New York City Marathon winner Meb Keflezighi (2:09:26)

Once all the elite runners finished, it was time for what I like to call the "normal" people.
Since we were so close to the finish line, we saw all kinds of struggles, triumphs, and emotions. We saw a man get down and do 10 push ups, a puke (or 2), smiles, tears, legs that wouldn't move anymore, a runner fall down and another pick her up and walk with her until she could run again, and our service men and women.

We (Ok, I lied, Danielle made them...she's so good at that) had made a few posters for the race for "our friends" whom we had never met, but we were following on Twitter, @mainerunnerguy and @operationjack. Despite the mass of people running and not really knowing what they looked like, only their bib number, we were able to spot both of them. Hopefully they loved our signs!

I know...kind of an awkward picture but it's all I have. The blurry runner on the right is Sam aka @operationjack. Danielle snapped this just after he gave us a thumbs up on our poster...more on him later. Sam ran a 3:03:48 1,730 out of 25,, awesome!

Meet Heather. Heather is the wife of Denton who was also our new friend. Heather and Denton are also from Portland....Oregon. We stood next to him and a women named Kelly who was there cheering on her husband Art (fun fact: when you cheer for a man named Art in a race, you end up sounding like a seal, "ART, ART, ART" try's true!). I snapped this picture of Heather as she came to give her husband a hug before finishing! Heather finished with an amazing time of 3:49:04 and took 12,519 place out of 25,000!! Nice work Heather, (think about the Maine Marathon October 2011 and come to OUR Portland!).

A group shot of the BFF's (best fence friends) Kelly, Denton, Danielle, Melissa and I. Thanks Tom for taking this picture:-) Too bad Tom will never read this blog...I think he might be amused if he did. Oh well.

It was about 3:30pm, we had been standing out there for 6 hours with minimal food and water, aching legs, tired arms (holding those posters is harder then you may think), stained voices and blurry vision (at one point Danielle says "um, the road is moving"). We decided that we needed food and water and went to meet Sam for lunch.

Danielle and I are both on Twitter and enjoy following other runners. It's fun to see what other people do for taining. Danielle came across @operationjack and told me to read his blog. Sam is doing a c.r.a.z.y thing this year and running 60 (yes 60, not 16) marathons to raise money and awareness for Train 4 Autism. Sam's mission is called Operation Jack, named after his son Jack who is autistic.

As many of you know my younger brother Zach is autistic and so when i heard about Sam and his mission I was so excited and I knew I wanted to help. I just didn't know how. We met Sam for lunch and we chatted for a while about his efforts, OJ, T4A and Jack. We asked Sam why he hadn't picked a marathon in Maine this you can imagine he schedule is a little crazy this year and he just couldn't fit it in. I told Sam if he came out and ran the Maine Marathon I would run my first marathon (um, yikes!). So Sam said if we got an Operation Jack team together, he would come out and run. I'm pretty sure he didn't know that he had just challenged a group of ladies who are up for anything! Challenge on!

I went home that night and could.not.sleep. I had so many emotions running through my mind as I tried to go to sleep. As I have talked about before, I've been having quite the pity party about not being able to run right now due to my pregnancy. This is just what I needed, watching all those runners finish was so inspiring and got me pumped to get back on the road. I thought of so many things that I wanted to tell/ask Sam and I didn't have a chance to at lunch.

I'll save you a lot of boring details but over the last week Danielle and I have been chatting with Sam and we've come up with a challenge for 2011.

1. We need to start a Maine chapter of Train 4 Autsim
2. Get a team together
3. Raise 5000.00.
4. Run the October 2011 Maine Marathon.

I cannot tell you how excited I am do be a part of this project. There will be a lot more details coming soon. BUT...if you want to join our team, please let me know!! You don't have to run the full marathon, you can run the half or even get a team and run the relay! If you're not from Maine....October is the perfect time to visit, come run with us! Think about it!:-)

If you are still, I hope you got a second bowl of ice cream. I need one after writing this!

My week ended by returning to Boston on Thursday for a Red Sox game...ahhh it felt so good to be back at Fenway. Baby Tyler is due at the end of July and I wasn't sure I would be able to get down after that this summer so I figured I needed to go soon!

What. A. Week. So good, So good, So good!!!

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