My child has Autism. Sailing the seas can be rough at times. There are storms, obstacles and problems navigating. Autism in our world is a lot like piracy. It robs. It hijacks. It leaves you battling for your vessel and your child’s new path. Autism also presents you a world of discovery, hidden treasure, and challenges you realize you’re up for. Life is a balance, and it’s no different with a child on the Spectrum. Autism Pirate is a blog devoted to discussing the good, the bad and the ugly.
I started a tradition last year of writing you and your brother
a letter every year on your birthday. Today you turn 10. I can't believe it. A
decade of being your mom! I can't believe how quickly the time
has gone by, I love you!
I know that you worry about growing up and that you worry about
mom and dad growing older too, but time moving on is all a part of life that
you can't change no matter how hard you try.
One of the many things that I will always love about you is that
you teach me something almost everyday. I'm supposed to be the one teaching
you, but you teach me more than i teach you. One thing that you show me over
and over is that taking life too seriously benefits no one. When you face
challenges in life I always want you to remember that taking time to laugh and
play is a big part of what is important. Mom is not always good about
remembering how important this is and the fact that I don't always do this is
NOT something I want you to learn from me. Mom is lucky that you and recently
other people have reminded me about this, and I'm working on finding more time
for fun. Hopefully when you read this letter when you are older I will have
made progress on this and you can see that I've always tried to do what's best
for you and Wyatt and having fun as much as possible is BEST.
I know that fun for you sometimes is a world outside of reality
that includes movies, TV shows, books and games that you love. Sometimes I try
to limit the time you spend in the movie and TV world but just for FUN on your
10th birthday I want to tell you about 10 movie and TV characters that you can
learn something from. Most of these characters you won't know but take some time
to get to know them and learn from them.
1. It's too big a world
to be in competition with everyone. The only person who I have to be better
than is myself. -Colonel Potter, MASH
2. “Don’t ever let
somebody tell you… You can’t do something. Not even me. All right? … You got a
dream… You gotta protect it. People can’t do somethin’ themselves, they wanna
tell you you can’t do it. If you want somethin’, go get it. Period." – Christopher Gardner, The Pursuit of Happiness
3. "Do or do not. There is no try." -
Yoda, The Empire Strikes Back.
no crying in baseball!"
Jimmy Dugan, A
League of Their Own (1992)
5."Anything worth having is worth going for- all the way." -J.R. Ewing, Dallas
6. "When it comes down to making out, whenever possible, put on side 1
of Led Zeppelin IV."
- MIKE DAMONE in Fast Times at
Ridgemont High (Only when you are old enough, like 30!) :)
7. " Hope is a good thing, maybe the best of things, and no good thing ever dies.” - Andy Dufresne, Shawshank Redemption
8. Reach for the sky! -Woody, Toy Story.
9. “Don’t be afraid of it just because it’s new.” - Babe
is like a box of chocolates, you never know what your gonna get. –Forrest Gump
Happy Birthday! My sweet boy.
Be who you are, have fun, and don’t ever let anybody tell you that you
have to be something that you are not.
Be who you want to be, love life, your family and yourself. Have FUN!
April is Autism Awareness month. 30 days. We are going to share a post a day all month. 30 things we have learned along the way.
Day 1 of 30- Let you child be who they are and you just might learn something!
This is one of my favorite pictures of Rye...
We were at the Shine a Light on Autism Lighthouse Challenge in Hannibal, Missouri. Scott pledged to climb the stairs of the lighthouse a ridiculous number of times. He did it. We were very proud of him. While we were waiting, they had a bounce house, children's games and face painting. All the kids were getting the "typical" face painting characters, animals, butterflies, balloons, etc. Rye sits down and declares that he wants two blue circles around his eyes. A few kids said "why do you want that?" while giving Rye an odd look. I asked Rye if he was sure that he wanted blue circles and he replied with his typical "sure I do".
I didn't think another thing about it and I nodded to the face painter telling her to go ahead. Rye loved his circles and thanked the face painter saying they were "just right". We continued with the activities and Scott finished his challenge. We visited with other families and after an hour or so we decided it was time to leave. On the way to the car I had to laugh as I saw three children leaving the face painting area with blue circles around their eyes...
Let your kids be who they are and when you least expect it they might surprise you. Early on in our journey I wanted Rye to be exactly like other children his age. I worried way to much about what other people might think about him. I worried a lot that people might think he is weird or odd. These days I just want him to be happy, be who is and live up to his full potential. When it comes down to it, that is all that really matters anyway.
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!!
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:
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.