Sunday, April 27, 2008

April 27, it hard

The other day, I did a tv interview about Jakob, Autism and our Autism Speaks Walk. I loved it for obvious reasons...publicizing the walk, bragging on my kid and raising awareness about Autism. The anchor asked me one simple question about raising a child with Autism....she asked, "Is it hard?".

Simple question...complicated answer. And I've been thinking about it for the past few days. I don't even remember how I answered it (haven't watched the tape yet), but I do remember thinking fast on my feet and trying to come up with a short, comprehensive answer (since I know how the darn media is, short answers are what they're looking for). No matter what I said, it wasn't enough so I really want to write about how "hard" it is...

Is it hard?

Yup...hardest thing I've ever done. Changing the way I think and changing beliefs I held and changing the way I see the world...hard...took (and continues to take) work.

Most challenging thing I've ever done. Going after what I wanted was never tough for me. Usually after figuring out what I wanted, I could figure out pretty easily how to get it. And usually it didn't take me very long so it never required a whole lot of patience. I knew what I wanted here...for Jakob to be happy. But I had no idea how to make it happen and it seemed nothing I tried worked. It took everything I had to keep trying...and keep trying. This challenge wasn't was hard.

Most exhausting thing I've ever done. Never a peaceful moment. Constant movement, constant thinking, constant worrying, constant running. Constant, constant, constant. Never time to kick back and relax. Never any sleep...(and the sleep I did get wasn't good sleep...tossing, turning). Tired and cranky all the time...both me and Jakob. Yup...that was hard.

Scariest thing I've ever done. Not having any clue what to do next or what therapy to try was scary. Not knowing what was going to happen to us in the future...institution??? Scary. Yup...fear is hard.

Most frustrating thing I've ever done. Ya know, all of us learn how to parent from our parents and how they raised us. Some of us had rough childhoods and make a conscious decision not to parent like our parents did but most of us eventually turn into good-old mom and dad. Well, my parents didn't parent a child with Autism...ain't no book for that. Every trick that I could've tried didn't apply to Jakob. I had to learn a whole new set of rules. Not knowing how to do it was yup, that was hard.

Overwhelming, maddening, depressing...have I mentioned exhausting? I could go on...

Yeah, it used to be hard...very, very, very hard. Then the day came when I decided enough was enough, life ain't supposed to be this way and I no longer wanted to live like that. That's when I started to breathe and trust my gut. I knew that there were answers out there for Jakob and me and I knew I could find them. And I also knew that this whole life experience would be as much fun as I was going to make it and that it all was happening for a reason. I knew there were lessons in this that I needed to learn and I was determined (and still am) to figure out every one of those lessons. Life's not about the destination, it's about the journey, right? I made up my mind that I was on one heckuva journey and I was going to enjoy it and do everything in my power to make sure Jakob enjoyed it too.

So the journey truly began for me a little over a year ago and I gotta tell ya, I'm digging it. I still face challenges and I still stuggle sometimes but I don't get so wrapped up in it that I get lost in it. It's liberating.

Simply put, "hard" is really no more than the opposite of easy. And I'd always been told that nothing worth having comes easily. So thru all the struggles, the pain, the anxiety and all the other negative emotions came something worth having. I have an amazing child whom I would never change or trade for anything. He is the light of my life and my greatest teacher. I was born to be his mother and he chose me to be the one to take care of him and to help him.

Another thing to remember ain't about me. None of this is. It's about him. I can guarantee that no matter how "hard" any of it was for me, it's been at least twice as hard for him. He's the one living in a world that he doesn't understand. He's the one with gut issues and doesn't feel well. He's the one who couldn't communicate. He's the one who no one understood. My little "hard" issues were nothing compared to that.

I have a job to do. A job that I take on with great passion, love and understanding. It's my job to help him make sense of this world he's living in. It's my job to make this world seem like so much fun that he'll want to join me and everyone else in it. It's my job to help heal his gut and rid his body of toxins so he feels better. It's my job to give him a bath, brush his teeth and put him to bed at night. It's my job to get into his head and his world so I can help him make sense of everything he's experiencing. It's my job to love every little thing about him. It's my job and I love it.

So when she asked me if it was hard, my first thought was "it's as hard as we make it" but I knew I couldn't say that without a lengthy above is a short-in-length explanation. The long explanation will come someday in book form...all the details of the journey will be shared...there are lots of details.

In the meantime, wanna know what he did last night? He was in the tub, happy as could be with the warm water all the way to the top. He was sitting there, looking at me, smiling and I was talking to him about how he can be, do and have anything he wants in life. And as he was grinning at me, he cupped his hands and splashed me right in the face. I was soaked. And I didn't want to react but it was so hard not to laugh so I just sat there with my eyes shut for a few seconds. When I opened my eyes, he had this huge smile on his face and he leaned over and pulled the plug in the tub. I guess what he wanted to do more than anything in his life right then was get Mom good...and he did. Once again, he proved me right. Little turkey.

Sunday, April 20, 2008

April 20, 2008...just a little video

We have another outreach tomorrow with our child facilitator, Susan. I love these outreaches. It's so helpful to see someone play with Jakob...someone who's been practicing the 3 E's (energy, excitement and enthusiasm) with kids on the spectrum for more than 10 years. She's really something.

So...I've posted a few videos from her last visit, 2 weeks ago. Pretty good stuff (if you can forgive the camera-work). In the beginning of the "joining" one, you cannot see Susan, just know that she's doing exactly what he's doing and loving every moment of it...his reaction to the joining is what I just love.


Friday, April 18, 2008

April 18, 2008

I'm sitting in my room at the Sheraton Airport in Hartford. It's Friday and my week at the Autism Treatment Center of America in Sheffield, Massachussetts has come to an end. But, I will return and I look forward to seeing some of the amazing parents that are on the same jouney as I am in November.

I've been wanting to write all week. I just didn't know where to start. I found myself in a bit of a fog as I just took it all in...the information, the emotion, the inspiration, the realizations and the never-ending hope for the future. There was something different about this trip compared to the last. This time, I was in a room with 85 other people who were all knee-deep in a Son-Rise Program. Over 60 children were represented in that room and every single one of them had made huge gains...regardless of if they'd been doing the program for 3 weeks or 3 years. Some were so very close to recovery.....yes, recovery.

At the very end of the program today, we all gathered in one big circle and just looked around at each other. For the first time all week, my eyes filled with tears. Such an amazing group of people...moms, dads, step-parents, siblings, grandparents and volunteers. They were all there dreaming big dreams for the children they loved and knowing that all things are possible.

I looked at the mom who was there for her 31-year-old son and felt so about never giving up. She was amazing. And she was there with her 28-year-old, what a family.

Then there was the mom with the 2-year-old son who has only been doing the program for 3 weeks. I was so happy for her. She's found Son-Rise so early in the game. She won't have to go through what so many of us do...the searching, the struggling, the fighting, the stress, the fear and the anxiety. Lucky girl, lucky little boy. I can't wait to hear updates on how they're doing.

The respect I have for every person in that room is immense. I know the strength and conviction it takes to go against the grain and follow what they know in their gut is the right thing to do for their child. I wish that for every parent living with Autism. I can speak from the heart when I say what a wonderful feeling it is to just do it...decide to do it and take that leap.

Every parent in that room celebrated everything about their child...I didn't hear any whining, moaning, groaning or refreshing.

I heard stories of kids who were completely non-verbal just months ago now speaking in 3-4 word sentences. Kids who once had an interactive attention span of 30 seconds now interacting for 30 minutes. A four-year-old who was totally exclusive all the time now always wanting to be with his mom and dad. A six-year-old who could've cared less about who was in the house with him who now greets his mom at the door with a smile.

I just spent 5 days in a place where miracles happen. A lot of miracles.

I got to meet the parents who created the Son-Rise Program for their "severly autistic, incurable, hopeless, doomed-to-be-institutionalized son". Bears and Samahria Kaufman...they did it. I've met their "incurable" son, Raun as well. Super-neat, way cool family. Throw in Raun's sister, Bryn and her husband, William and you have a bunch of unstoppable forces of nature. Wow. Seriously, wow. Maybe someday soon I'll be able to say more...but for now, wow is the only word I can come up with.

I can't wait to get back in the playroom with Jakob tomorrow. I've learned so much more about what to do and how to do it. I can't wait to see and talk to the wonderful volunteers who have been working with him....I have so much to share. I can't wait to find and train more volunteers to play with Jakob...I have so much to teach them. And Jakob has so much to teach all of us.

As excited as I was after my first trip here...we can now triple that least triple.

By George, I've found it. I looked and I looked and I looked and I found it. What an awesome feeling.

Monday, April 07, 2008

April 7,'s working!

So neat, so cool, I just dig it.

We had another Son Rise Facilitator Outreach today and wow, the kid is doing great!! We made a list of special changes...wanna see?? Ok! I'd be glad to share...let's start with vocabulary. When we started in January, he said "up" and that was pretty much it. Now he says "bubbles, Mom, move, black, blue and bounce"...all clearly! And there are soooo many words that he's soooo close to saying. It won't be long and he's trying so hard. He's definitely understanding the value of language. It' so cool.

And he's giving us so many green lights, so many opportunities to introduce him to new activities. He's developed such an interest in interacting with us that he's open to trying different things.

He's so much more flexible. He's lightening up and being less rigid.

We're getting more and more eye contact every day and he's looking longer. He's engaging us!

And...he's ineracting for longer periods of time. He'll stick with an activity with us for 5, 10, 15, 20, 30 minutes...sometimes even longer.

He was so funny the other night, I cried I was laughing so hard. He's loved to draw rainbows for the longest time. One day, a while ago, I drew 2 moons and made a rainbow with that...he titled it "Moonbow". So then we did a starbow and a sunbow. We've been drawing these "bows" for weeks. Well, the other night, I drew 2 cows...then 2 dogs...then he took over and drew a pigbow, catbow, fishbow, turkeybow, frogbow, lizardbow and a snakebow. He'd draw the animals and hand me the crayons that he wanted me to use to make the "bow" and then he'd title it. He started a turtlebow but was so tired that he was almost falling asleep. I promised him that he could finish the next day and he agreed to come upstairs and go to bed. So frickin' cute. He was coming up with all the animals on his own...I'm tellin' ya, he's brilliant!!

Oh yeah...and he's given up cookies and is eating bananas and cereal instead. Ha!

We're just having so much fun and he's laughing all the time. One of my favorites things to do is ask him where Mommy's belly button is...he takes his hand and first shoves it down my clevage thinking he's gonna find it. He eventually does but it may take a minute or two. He's persistent...gotta respect that.

I leave Sunday for Massachusetts. I'm really looking forward to it. I just can't wait to learn more and see what we can do with him next.

I did take some more video today...I'll get it up soon as I figure out how to edit it. We have this blind spot in the playroom where you just can't see what he's doing through the window so there are some points where it looks like an empty room. I'll work on it. And, I have to take video of me in there with him to take with to I'll get that up too.

Party is on!!