Saturday, September 03, 2011

Up Up and Away... at 2:30 am

Lately, my daughter Avery has been experiencing some rough nights. Just as Max did at her age, she is unable to sleep through the night. Could be night terrors, could be a case of the munchies, or it could just be her logical brain telling her, "I am awake... it's time play".
Since the birth of our kids, my wife and I have always taken turns, getting UP with the kids. For most families this only lasts a year or so, with Autism, it has been 9 years.
God bless Zoe (our typical child), she has learned how to sleep through anything: Thunderstorms, fireworks, barking Reggies (that's our dog), and now Avery.
Lately, Avery will wake up around 1 or 2 in the morning, at first she will jump around, laugh and arrange her toys in an artistic way. After about 30 minutes it is either time for her to let us know, "I am bored with this, time to play" or she falls back asleep. Last night was one of those "I am bored with this, time to play" nights. Since Avery is non verbal this generally starts with crying and banging on her door.
This is when my wife or I (whom ever is "on call") spring into action. We take her downstairs and start the what is she trying to tell us game. Last night was a bonus as Max joined our party.
Max was easy, he wanted food (that's what he always wants). Max had Nutella for the first time, and boy he loved it! OK, One happy autistic child taken care of, back to Avery...
Avery wasn't hungry, I know this because when I presented her with her usual favorites, she pushed them away and said, "Uhhh" (which means NO!). She wasn't thirsty, I know this because she threw her cup on the floor (point taken). She reluctantly got into her swing and started spinning, we refer to this as her "Cirque Du Soleil" move, but she was still crying. She was trying to tell me something. The television was already on, Max was watching Phineas and Ferb. I checked the guide and low and behold, UP just started.
Avery stopped spinning and was instantly enthralled. We watched the entire movie, she loves the Dog, Max loves Kevin the bird, and I loved sitting in a room with two happy kids. I also have a soft spot for the movie UP, it ranks up there with my other favorites like: Animal House, Scarface, Good Fellas, Caddyshack, Casino, Godfather 2, and any Zombie movie (all of which are not very kid friendly).
Tonight, I am sure will be more of the same, and the next night, and the next night... I wouldn't trade my life for anything... Especially since I now have UP on DVR, and Nutella in the cabnet... Oh, and it is my wife's night to get up with the kids!

Friday, September 02, 2011

Don't try this at home...

One of the main reasons I started this blog was to let people know the mistakes I have made. In hopes that people who read this will learn and not repeat them.
First lesson: It is important to be a great father, but it is just as important to be a great husband.
I was not so great, when I first got my son Max's diagnosis I fell into a deep depression. I did all the grieving, my wife became the wet band aid that held the whole circus together. When we got my daughter's diagnosis, I didn't do much better.
My wife is my number one autism superhero. Having her Masters in special Education, I expected her to do all the work. Not once did I think to myself, "hey, maybe she deserves to do some grieving too".
The divorce rate of parents with kids on the spectrum is 80% - I wasn't doing anything to improve upon that number. I almost single-handedly destroyed our marriage.
Autism is tough, when you get that diagnosis, you feel helpless and defeated. Mothers sometimes blame themselves. It is important for us husbands to stay strong and do what ever we can. Yeah, it is ok to grieve, but it is imperative for us to MOVE ON. Your kids will do best when they have two strong parents working in unison to give them the start they need.
It is tough to write this. I am ashamed of all the hell I put my wife through, but by owning up to it and trying to do my best I feel I can make our future better.
Things are better now, but it has taken a long time. We still have a ways to go but things are definately better.
I love my wife and if I had a time machine I would go back and do things differently. Anyone know where I can get a time machine? The only one I have come across is one that moves into the future at regular speed...
The most important thing you should take from this post is a saying my wife and I live by, HAPPY WIFE, HAPPY LIFE.

Carly Fleischmann one of my new Autism superheroes

Carly Fleischmann is one amazing girl, and the more I read about her, The more I love her. She is a such a good role model, not just for kids with autism, but for all kids and adults too.
Carly is non verbal, but she has found her voice through a computer. She makes me think of my daughter, Avery who is non verbal as well.
Avery is 5 and it breaks my heart when she struggles to convey a simple thought. Something as simple as "turn the channel because I hate iCarly" or "I want Goldfish for breakfast" or "Where's my Reggie?" (Reggie is her dog). Things that come so easy for most kids out there become a "grab my hand and show me" game of trial and error. We eventually get it right, but not without some tears. Currently, She has been doing a PECS program as well as speech therapy which will help her start to find her voice.
Carly gives me hope and inspires me and she will inspire you as well. If you are living with Autism or not you will find her a remarkable young lady.

check out this video from "The Talk". Then check out her Blog. then I dare you not to Like her on Facebook.