Hard Days...

Some days are just harder than others...and that sometimes leads to a cluster of hard days and worse still sometimes hard weeks. This was one of those weekends for me -- although it has been a little while since I had a good cry so I suppose I was do.

It started out 'hunky-dory.' I mean does any long-weekend ever start out hard? Although there are tricklings of things I am afraid Michael will never be able to fully experience for some reason this weekend felt like an overwhelming amount of worries about what he will need to overcome and how that may or may not impact all the joys life has to offer for him. 

I try my best to stay on the postive side of this diagnosis but, with his third birthday coming up fast and his impending preschool start date in less than 6 weeks (I am not sure I am ready to let him go to school - regardless of whether or not he is ready). The combination of both these dates it is too much of a realization that I can't just 'freeze' him right here. I wish I could for so many reasons - right now he doesn't realize things are different for him, and that is something I want to hold onto for as long as I can.

For exampleake his delayed communication (or lack of communication). There are so many times he looks at you with such purpose and tells you just how it is hands and all!!! Other than the few exceptions when I can't figure out what he is asking for, I am pretty confident he thinks he has full fledged conversations with us daily. I don't know that I ever want him to realize that this is not exactly the case

Or how about the 15-20 hours a week spent doing therapy. Tasks that come all to easy to his sister who is spouting off new words weekly if not daily is taking him weeks/months to try to accomplish --- and her vocabulary is well surpassing his at this point. That of course might be adding to the 'tough' piece of this whole diagnosis as well. As much as I truly enjoy watching Gabby grow and develop - she is just amazing!!! - with each new accomplishment it only highlights where we are still trying to achieve the same milestones with Michael. I know, I know all children develop at different rates and even without this diagnosis it is highly unlikely they would track through lifes events exactly the same ...but it is still somewhat disheartening to watch.

On-top of the 'ignorance is bliss' environment I would like to maintain for Michael forever - the world outside of his immediate surrondings is not always nice -- and I would love to keep him here forever sheltered from the at times 'unnice' world.

Sleep..........

Speaking of sleep I am off to bed........have a great night!!!

Wow..................Parenthood

So I don't remember anyone ever telling us just how hard parenting would be .....and I am positive the bags of flour in High School definitely didn't illustrate the difficulty. Apparently, Austin was born long-ago enough to have forgotten most of it except for the occassional memorable meltdown. I have figured out a way for people to figure out how hard raising kids is before they decide to have children.  It is designed as an opportunity to attend a one-month "children" boot camp. Once signed up someone comes to live with you for a month and bring you through the stages of childhood. 

Week 1:
The Infant Year:  the person just follows you around and tells you to do things and mid-task has you have to run and do something else. Oh, and of course just wakes you up every 3 hours and makes you stay awake for
Week 2:
The Toddlers Years: Throws everything you own everywhere and has tantrums (at home, in public, in the car, whereever). Bonus: begins to let you get sleep every other night.
Week 3:
The Childhood Years: Pees everywhere when going to the bathroom except in the toliet. Only has a breakdown 2x a week, wants to do activities always. Bonus: Now sleeping through the night!!
Week 4:
The Teenage Years. Basically just asks you to empty out your wallet daily, gives you attitude and leaves their dirty laundry all over the house

Changing Perspective

As the audience that is aware of Michael's diagnosis continues to expand there are phrases I continue to find peoples response more and more odd. Two of the most common are below:

• I'm sorry
• Did they say to what degree?

So starting with "I'm sorry" - I am sure I would have used this phrase before and I think it is probably the polite thing to say rather than just standing there in shock. Initially, I don't think it struck me as odd but, as we settle into month 5 post-diagnosis I don't think there is anything to be sorry for and I sure don't want people feeling sorry for me.  We have an amazing, fun, loving 2 year-old boy -- that alone is AMAZING! He has provided us with the opportunity to gain a new perspective or rather put things back into the perspective that it belongs.  Out of curiosity since I use the word sorry in my day-to-day life I looked up the definition:

Webster.com Definition:

1: feeling sorrow, regret, or penitence

2: : mournful, sad

3: inspiring sorrow, pity, scorn, or ridicule

 

If I take a closer look at the definitely I know I don't want anyone's pity. There are days were I am mournful of all the goals and dreams that I had created for Michael before he was even born ... although I still hold them close just in case this life takes us places I never thought it would.

So the whole question of mild vs. severe just seems like an odd question to me. Well - and we have no idea. I don't know if we don't have a degree of autism because of his age or what. For now we are just focusing on the improvements we are seeing and hoping to build on them.  I think what strikes me as odd on this one is does it matter? Would you feel worse for me if you he was diagnosed as severly autistic or would you be able to dismiss the diagnosis if it was mild? It just seems like an odd questions because, if I had an answer I have no idea what would be the next response.

Summary of Consulting Firms

Yipee!! Housework - just what I always wanted!

Opportunities at work??

Lately I have been having a lot of fun with paint.....regarding all different aspects of my life. Here is one regarding "opportunities" at work. In the 'early days' I remember being excited about someone positioning a good opportunity that they had just for me....now I realize it usually is just the crap no one else wants. =)

A Well Needed Break!

So what has felt like years I realized only recently has been a few months. Before we left I was thinking boy – a lot has changed in the past 6 months it would be good to just take a break. Then I realized  that it has not been 6 months since we found out Michael was autistic but, really a little over 3 and just about 3 months of therapy. 

Pete gets to pick his vacation in January and was ‘lucky’ enough to get February vacation week off. After much deliberation we decided to take a vacation and head to Cars Land in California (a 6 hour flight!) Of course upon boarding the plane Pete’s first thought was “how did we not talk each other out of this – we are crazy!” After an interesting flight and a couple bumps along the way it was nice to “disconnect” from work and everything else for a couple days.

We made sure to break up Disney and only go for 2 partial days during our trip and made sure they were not back-to-back. Disney is definitely a little sensory overload but, we made it through with very little meltdowns from either one.  The biggest hit was the Pixar parade followed by the Character Breakfast.  

Gluten-Free

We are taking steps to go gluten-free with an official start date of 1/15 (don’t ask why I choose the 15^th it just seemed easier than the first). We have done enough reading of parents of autistic children that have found benefits when going gluten-free and I belong to the Crossfit community that really adheres and supports Paleo.  Although I have attempted Paleo before with no long-term success, my menu just isn’t varied enough going in and I end-up eating the same thing everyday.  Boredom = not successful.

Our goal will be six weeks gluten-free and where possible paleo.  I will be tracking our progress, foods we have fallen in love with, websites with recipes and things that didn’t work out so good. The one big watch-out we have is Michael is picky when it comes to meals (snacks are fine).  We are concerned that he just won’t take in enough food.  Either way gluten-free here we come.  I will let you know how it goes and tips are welcome.

The Teenage Years

This week Austin went on his first official date. Although he has had a couple 'girlfriends' their contact had been limited to in-school and after-school functions, texting and spending time on oovoo.  This weekend he went ice skating with his girlfriend without parent chaperons and as a gentleman bought a hot chocolate and a cookie for the both of them.

I have to say I am not sure I am ready to have a son who is "dating" and all the fun stuff that this ultimately includes.  We had a brief talk in setting ground rules on not doing anything either of them are not comfortable with like kissing. Much too my surprise the response was "She doesn't mind that we kiss."  So mark that up as another first for Austin both a first date and a first kiss.  Here I thought the year would be firsts for Gabby and Michael not Austin.  Of course as a result this was shortly followed by more ground rules on behavior that is and is not acceptable.

Oh young love!!! I reflected just a moment on my 'boyfriend' in 8th grade. Before things got serious and complicated in relationships, when things were fun and exciting. Hopefully he takes the time to enjoy the simple things for a while because, I am not sure I am  ready to handle the conversations around the more "complicated" parts of relationships yet.

The Right Way to Play?

Did you know there is actually a way to play? It is called purposeful play. I am not sure if this term was around when I was bringing up Austin but, it is all over the place now. Just google “purposeful play” and you will find lots of links to research and what I found even more shocking was consultants for daycares. Now obviously I deal with consulting firms in business but, who ever thought there was consulting business in daycares?

Ok back to the topic at hand.  I have learned a lot about how to play, when to prompt understanding and when to just sit and watch, what activities to do.  This has not impacted the kids much as playtime for them is still playtime but, for me it has become much more of a thoughtful interaction.  For example: When you play with bubbles with your toddlers did you know how many opportunities exist to teach so many different things.  Our bubble time play now  consists of:   waiting for prompts to blow them, teaching on how to blow (and how to say the word), learning the word “pop” and learning to point when popping them.   Maybe all this took place before as a normal natural progression, but when I reflect I am not sure.  This of course is just one example of how our play has become a series of useful interactions (and bubble time is one of the easiest I think).

My thoughts are that all parents not just parents of autistic children or “differently-abled” children benefit from understanding how to play. I am seeing Gabby grow and develop through our new way of playing that I don’t know if I would see if we continued our previous playing ways.   Not that all of our play is structured because it isn’t, but you look at it through a completely different lens now. Every interaction really is a teachable moment and it is important to make the most of it. Now a parent-teaching play consulting group is an idea that could gain traction.