Sunday, March 31, 2013

Light It Up Blue!!

Facts:
  • Boys are four times more likely to have autism than girls
  • Autism greatly varies from person to person (no two people with autism are alike.)
  • The rate of autism has steadily grown over the last twenty years
  • Autism is the fastest growing developmental disorder, yet most underfunded
  • Children with autism do progress – early intervention is key
  • Autism is treatable, not a hopeless condition

1 in 88 children in our country have autism, our son Rye is one of them.  

Awareness is important.  It brings support for individuals and families, understanding, and education.  You don't need to know a lot about autism to spread awareness.  April is Autism Awareness month.  If you are interested in spreading awareness, please consider participating in one of the following events:  

Light it up Blue!-  World Autism Day is April 2nd.  Buy a blue light bulb for your front porch, wear blue to work, and have your kiddos wear blue to school.  

Join an event near you. 

In Columbia on April 2nd you can join the Light It Up Blue photo at the Mizzou Columns at 4:30 p.m.  Sponsored by University of Missouri School of Health Professions.  

April 2nd:  Aaron Likens will speak at the Thompson Center at 6:30 p.m.  If you haven't heard Aaron before, check it out he is an amazing speaker and shares what life is like for an individual on the Autism Spectrum.  

April 3rd:  Missouri Autism Rally at the Capital.  Autism Organization displays 
State Capitol building - 3rd floor rotunda 8 am - 3 pm 

April 4th:  Quincy, Illinois,  6:30 p.m.   Join the Quincy Area Autism Support Group as they host the 3rd annual Autism Awareness Rally. The rally will include an awareness walk and a check presentation from a local Girl Scout troop. Everyone is encouraged to participate and wear blue in support of the Autism Speaks "Light it up Blue" Campaign.

April 13th:  Ella's Hope for Autism Annual Walk in Columbia, MO.  Join us!!  Register Here!  Team Autism Pirate will be walking for the third year in a row.  Please join our team.  

Find a way to show support.  We appreciate any and all participation in any of the about events or an event near you wherever you live!  WE will be posting throughout the month on Autism Pirate about our journey and about strategies, programs and "tips" that have helped us along the way.  Light It Up Blue Friends!! 

Saturday, March 30, 2013

Merry Christmas! Happy New Year! Happy Valentines Day! Oh Crap Easter is tomorrow!!

Hello friends!  You may have noticed, we did not send holiday cards this year.  We had plans for a new year's card but that didn't happen either.  We joked that we should send a valentine card but since Easter is tomorrow I think it is safe to say it is just not happening.  We are typically pretty good about getting the card together however this year we were not.   We don't need to get into the details of why we didn't get it done...do we Scott Shade?  :)  We love getting cards from friends and we will be on top of it next year so please don't take us off your list. I thought I would write a blog to update all of you and send it out via email and Facebook so here goes...

As most of you know we write this blog called Autism Pirate.  We were also asked to blog for the Columbia Daily Tribune last year which we do once a month or so.  It's been a little over a year since we decided to get more "serious" about our blogging at Autism Pirate.  A year is a long time but is seems to go by so quickly when your kids are little.  It almost seems like I blink my eyes and wake up to a whole new world.  Rye continues to do well. He receives speech/language therapy two days a week and behavior therapy multiple times a week for individual skills and social group therapy. He loves video games of course which we try to limit because they seem to pull him to a world that is not reality based.  He continues to enjoy Special Olympics and I am now coaching basketball which is fun.

One huge thing this year that has happened is that Rye is HAPPY!  Rye is happy most of the time!  It's amazing.  He is not always engaged but when he is engaged he is happy and most definitely more confident.   I contribute this to stability at school and trying to keep a routine at home as best as we can.  He has amazing teachers and a para professional who "gets him."  We have three folks with him who just get it.  His home room teacher, his special education teacher and his para professional understand him, love him, and most importantly expect the best out of him.  We certainly continue to struggle and wish that many things could be different but most importantly, 90% of the time he is happy.  It is a weight that has been lifted.  Happy just being who he is and (knock on wood) we have not had long periods of depression/sadness for quite some time.  That being said we continue to want more progress and hope to provide Rye with more opportunities in the coming year.

Wyatt is all of a sudden completely grown up and into sports in a crazy fun way.  Scott is so thrilled to have a boy who wants to watch football and basketball with him and ask questions about the teams and cheer and participate in a way that makes him love both sports even more.  Wyatt also officially has long hair.  I don't really know what to think about it.  My Mother hates it, Claudie and Cheryl hate it, and our cousin Ava who cuts the boys hair is absolutely beside herself about it!  Wyatt on the other hand loves it and has proclaimed that he is keeping it.  In our world we are cool with it because to be quite honest it is one less appointment.  Wyatt is also doing very well in school and continues to amaze us with his commitment and passion for learning.  He moves around a lot to different classes for different levels of learning but Ms. Huhman keeps a close eye on him and he is really going to miss her next year after two and a half years of being his teacher.

I continue to work at ACT but have taken on a new position that keeps me very busy.  I am now the Program Manager for In-Home Services.  We have grown a lot and we are serving close to 100 individuals between the two programs and now have more than 60 staff.   Crazy!  I'm hoping for big things to come in the next year that allow my program to provide some additional services that I've wanted to do for a long time.

Scott is crazy busy as usual but keeps the balance and thank goodness helps me so much with everything.  We are happy.  We are busy.  We are doing well.  We have set a goal to blog more and I have a few tucked away.  We will also be posting more from our guest bloggers and adding a few as well.

We want to thank all of you for your continued support for our family.  Many of you read our blog regularly and we so appreciate it!  We also have a Facebook page called Autism Pirate.  Please "like us" and follow our journey.  For those of you have have not read our blog before here are my top 5 favorites on here and at the Tribune:

1.  Autism Pirate...the story behind the photo
2.  Maybe Christmas perhaps means a little bit more...
3.  When did you know?
4.  Put down your cheeseburger and quit judging me
5.  Happy Birthday Wyatt!

Merry Christmas!

Happy New Year!

Happy Valentine's Day!

Happy Easter!

We will be timely about our holiday card next year!!

Love,  Scott, Tara, Rye and Wyatt

Saturday, March 16, 2013

Put down your cheeseburger and quit judging me.


As humans we love to compare things. We love to determine which of this is better than that and be the one to tell everyone about it. We get credit for recommending the best chocolate one has ever had and we like to be recognized for it. But we also have a tendency to compare and judge negatively. And sometimes we’re not even trying to be mean about it, but we are, in fact, making judgments.

In the past few years I’ve tried really hard to stop. It’s hard though when we believe something so strongly that what is best for us is best for everyone else too. The saying “walk a mile in another man’s shoes” is so true and the fact is, everyone is dealing with something. I try to stay fit, eat healthy and when I see an overweight person sitting at a stop light eating a Big Mac… I shake my head and think, “how can they be that overweight and still think it’s ok to eat that?” And as hard as it is for me to justify being overweight and out of shape and still eating super-sized fast food meals, it’s not my place to make, or EXPRESS, any sort of judgment about it.


You’re in the grocery store.  You hear the kid crying, begging for the candy bar… having a complete fit because he’s not getting it. There’s the crying baby on the airplane. The kid having a meltdown at the mall. We’ve all seen it. Our reaction? “Those parents have no control over their child and that child needs some discipline.” I’ve done it, and most of you have too. Here’s something that maybe we don’t understand or think about. What if that child has sensory issues? What if that child has a disability? When we walk into a grocery store, most of us have the ability to block out the buzzing of the fluorescent lights, the hum of the freezers, the tag rubbing on the back of your neck, the squeaky wheel on the cart, the smell of the seafood department and the chatter of 200 people. What if you couldn’t? Don’t you think all that noise and chaos might make you want to cry? Add on top of that, a parent, the one person with them they trust, getting mad at them for not being “good” in the store.


We make these judgments because we are comparing. If you have a typically developing kid who has the ability to focus, listen and comprehend what you’re asking them to do in a store full of stimuli, chances are you’re going to have a fairly successful trip to the store. That’s great for you. But when you see my kid with Autism, who REALLY doesn’t want to be at the store because it’s a sensory overload experience for him, please don’t assume it’s my parenting.


Recently we were at a hotel and went to the swimming pool. There was a family there with four children. Rye was trying hard to get them to play with him. Socially, things are awkward for him and finding/making friends is difficult because he has a hard time interacting with peers. These four kids really didn’t want to play with Rye, probably because he said something off the wall like “hey guys, want to play light sabers?” They were probably thinking “in a pool? you want to play light sabers in a pool???” He persisted, they insisted on not playing with him and one thing led to another and one of the kids splashed him in the face. I could see the look in his eyes as he got out of the pool and walked toward their mom to tattle on them.  I said “Rye, no. Come here.” He was mad as a hornet, looked at me and stopped walking toward the mother who was just beginning to notice his mood. He WAS going to listen to me, but he wasn’t done making his point. Rye turned toward the pool and did a classic cannon ball about three feet from these kids. The family was a little stunned, decided it was time to go and gathered their things. They walked by the table where I was sitting and I heard the mother say to one of the kids, “what is wrong with that kid?” I stood up, approached her and said “I’m sorry for that, and not that it should excuse his actions, but he has Autism and sometimes it’s hard for him to interact with other kids in a social environment.” She grabbed my arm and apologized. “I had no idea.”  Exactly.


This is not an isolated incident, it happens a lot. Christmas Eve dinner at a restaurant a woman told Tara that she needed to “get control of her child.” Within a week of the swimming pool incident, another person told me “maybe you need to control your kid.” Then of course there’s my blog about Wyatt’s basketball practice. What I want to say in response to these people is something like, “shut the f@#! up.” What I usually do is apologize and be assumed a terrible parent with a spoiled child.


Before we criticize someone for having a dirty car, or being overweight, or not having “control over their bad child” or not doing something the way we would do it… think about what it is that could possibly take precedence over whatever we’re judging them for. Does their husband have cancer? Have they just lost their job? Did she and her sister just have a fight? Do they have a medical condition? Does their kid have a disability? Here’s my new method for stopping the judgment. Every time I see someone do something I wouldn’t, I look at myself and determine how the person I’m judging, could judge me back. That usually does it.


Most all of us are doing the best we can and our best shouldn’t be put on a scale.