Tuesday, November 27, 2012

Dear $450,000,000 Powerball WINNER!


Written by:  Tammy Wheaton, Guest Blogger

I am writing today with a heavy heart.

Our autism journey has been full of ups and downs. 

Yesterday was a huge disappointment, and I allowed it to get me down, but only for a moment; cause as you autism parents know, you make no progress down in the dumps, you got to get right back on the horse!

Warning: I never post the rough times on social media, so all of my Facebook family and friends only hear about the fun times with Beau with an occasional hint that we might be having a rough time.

Well on this blog I am going to tell the truth....the good, the bad, the ugly....the uncensored version of our lives with Beau.  

So if you only want to know the positive stuff, send me a friend request on Facebook: Tammy Weaver Wheaton....and only read the last three sentences of this blog.

So my first blog finds me on the day after what we will call a "minor setback".

Maybe someday I will blog about how we got to this point, but here is where we are:

Beau is hurting himself. He is non-verbal.

He can't tell me he loves me, what he wants for Christmas, when he has to go to the bathroom, when his tummy hurts......why he beats himself silly in the McDonald's drive through, why he grabs my face when I get him dressed, why he punches his hips and legs until the bruises are the size of grapefruits and I fear the school will think I hurt him, why he punches himself and has to wear a helmet any time there is mention of food, on the bus, in the morning, at school, in the evening, and sometimes during sleep.

The TC has told us they cannot help and to seek alternative treatment options.

The BCBA referred us to Kennedy Krieger Institute in Baltimore, Maryland because there is no way to address the frequency, duration, and severity of what we are dealing with without intensive, inpatient treatment options that Kennedy Krieger can provide.

So it has been months of bruises, and now what seems to be a permanent lump on his head, sending data, videos, enduring hours of meltdowns, attacks, screaming, figuring out how to get him cross country, ordering safety harness, helmet fitting, and oh yes, punching himself to what I fear death only for the insurance company to say it is not an emergency and is therefore...not covered.

I allowed this to defeat me but only for a moment!
Be glad to know and rest assured I am back on the horse, we are appealing the decision as far as we can go, and we have a plan B!

If any of you are wealthy and want to save the life of a child with autism, you know where to find me!

Thursday, November 22, 2012

Welcome Natalia Phillips... our first Guest Blogger!

We are very excited to announce that we will be hosting blogs written by others who are living the life of parenting a child or children on the autism spectrum.  Please check out our new page that spotlights our guest bloggers and we will be adding more very soon.  Our friends will be blogging once a month and contributing their knowledge and their experience on the good, the bad and the ugly.  Our first guest post was written by Natalia Phillips.  Enjoy and Welcome Natalia!  



All Aboard My Crazy Train!  
Written By:  Natalia Phillips

          To quote the great Ozzy Osbourne, “Crazy, I just cannot bear.  I’m living with something that just isn’t fair…I’m going off the rails on a crazy train.”  Some days I feel this way.  I have five children.  Three of them are on the autism spectrum.  Our household can get very crazy and there are days that I feel like it is incredibly unfair – unfair for the three who have so much to overcome, unfair to my other two children because so much revolves around the three with special needs, and unfair for me and my husband because we have to work extra hard to not let all the stress and chaos trickle down into our relationship.  All of these things aside, I love my life.  I have an amazing family and have been blessed with five beautiful, unique children.
          I’m grateful for the opportunity to guest blog for Autism Pirate, mostly because I lack the time and motivation to create my own blog site.  I have so much to share, whether it is telling all of you about the good times, venting about the bad ones, or seeking advice from other parents out there.  For now, I’d simply like to introduce myself and briefly tell you about my five kids.
          My name is Natalia.  My husband, Scott, and I have been married for 8 years.  Over the course of these past 8 years, I have been a foster mother, a biological mother, an adoptive mother, and most recently, a surrogate mother. 
In 2004, when we were 23 years old, Scott and I became foster parents.  That summer Sarah came to live with us.  She was 4 years old.  Sarah was diagnosed with Pervasive Developmental Disorder, as well as speech and language delays and intellectual and cognitive delays.  We obtained legal guardianship of Sarah in 2006 so she could leave the foster care system and live with us permanently.  Sarah just turned 13 and the teenage years are bringing a whole new set of challenges. 
On December 15th, 2004, our twins came to live with us.  Tyrel and Tyrese were 3 ½ years old.  Tyrel had some mild speech delays and some major behavioral problems and anger management issues.  Tyrese had a diagnosis of Pervasive Developmental Disorder, accompanied by speech delays, delays with processing information, sensory issues, and fine motor delays.  We adopted the twins in 2010 and today they are 11 years old.
We also have two biological children – Paul, age 6, and Cash, age 4.  From birth to 12 months, Paul was a happy, loving, and smart baby who hit all of his milestones early.  Almost immediately after he turned 1, we noticed that he wasn’t learning any new skills and shortly thereafter he began losing the skills – speech, fine motor, and social – that he did have.  At the age of 2, Paul was diagnosed with Autism Spectrum Disorder.  We were blessed to already have so many resources in the home for the older three children so Paul was able to get a lot of help right away.  He has made remarkable progress and although his social skills are still lacking, he is super smart and has an amazing memory (and this isn’t just mom-bragging…Tara can attest to this!).  And then there is Cash – my wild child.  He is outgoing, smart, and so funny!  I know he’ll grow up to be such a loving and accepting person when I watch him interact with his siblings because he doesn’t notice the differences that they have. 
So that’s my life in a nutshell.  Never a dull moment!  I look forward to sharing more with everyone.  

Wednesday, November 14, 2012

Happy Birthday Wyatt!

Dear Wyatt,

I am writing this while you are fast asleep.  I hope you are dreaming of the presents and party to come over the next few days. I am also writing to tell you that I hope you read this when you are older, at a moment when you feel resentful or cheated or just fed up with the whole thing that is your life as the only sibling of a child who has autism.

I want you to know that up to this point at least, I have tried my best. I promise to keep trying my best and to give the job of being your mom my full attention. I admittedly don't always do that but I pledge to do better. I never want you to feel cheated or fed up but I know you do.  I also want you to know that you are right. You are cheated, you should be fed up, just know that mom and dad understand and we love you more than you will ever know.

You probably won't remember this but a few months ago we were talking after you handed out blue light bulbs to the neighbors for autism awareness.  I said "Wyatt you do know that we are so happy that you don't have autism don't you?"  You said "no" and my heart skipped several beats. You were six but aware enough to know that maybe sometimes mom and dad unknowingly highlight our situation because on some level it makes us feel better. I'm so sorry you ever felt that way.  Please know that since that day I have tried to be cautious in involving you in autism related events that you don't want to be a part of or because of your age or that you don't understand.

The amazing thing is that since that time, when asked, you always want to be there, you are always willing to help and you don't complain.  I know this may change and if it does always know that we understand and appreciate you, love you and support you know matter what.

I love you Wyatt.

Tonight you turn seven. At the stroke of midnight exactly you turn seven. Born at midnight on a full moon in the middle of a Colorado blizzard.  I think that was a collection of craziness that was the beginning and preparation for the chaos that is your life.

You are one cool kid and for your seventh birthday I want to tell you seven things I love about you.

1.  I love that you never stop talking even when you are asleep.  I guess I have that coming!

2.  I love that you always want to be the life of the party and find a way to involve yourself in the most interesting thing going on in the room.

3.  I love that you are one of the most helpful people that I know. You are always willing to lend a hand no matter what.

4.  I love that you don't have the attention problems that make me a disaster.  I love that we can be pulling out of the driveway and when I sigh you say "Mom what did you forget? your phone or your lunch?"  I appreciate your gift of remembering on many levels.

5.  You are an amazing brother.  You love Rye and cried when I threatened to finally put you in separate rooms.  You melt my heart when you engage him in something by being clever or when you explain something to him in a way that he understands because you know how he thinks better than anybody.

6.  I love that you are competitive in every bone of your body. I love that you want to win and give everything your all in order to do so. Some people won't like this about you but I think it is one of your greatest strengths.  There is nothing wrong with the desire to win as long as you learn to lose graciously.

7.  I love that you love your family so much and that you constantly remind us how important it is to spend time together. I can't tell you how much it warms my heart when I ask you what you want to do and you say whatever it is and follow it up with, "together the whole family."

Wyatt I love you for all the things you bring to our family and I'm so excited to be a part of your journey.  Happy Birthday!  We love you!


Sunday, October 21, 2012

You can't, or you are not able?


There's a difference between saying "I can't do that" and "I am not able." 20 years ago, I, like a lot of people, rolled my eyes at being "politically correct". Having a son with a disability has changed that. We don't say "colored" people. As a friend of mine once said, "we aren't a rainbow, we're black." We don't say "retarded" because, well, it's offensive and in most cases inaccurate. We don't say handicapped because it places emphasis on their disability. And I know Tara and I have beaten this dead horse, but we don't say "that child is autistic," we say they have autism. The reason to be "politically correct" is to place importance on the fact that people are people, first. Whatever diagnosis they might have, whatever their skin color, whatever their religious beliefs are and so on, should ALWAYS be secondary to WHO they are. If you have a friend battling cancer, you never say "my cancerous friend," you always say "my friend with cancer," if you even get to that within your first sentence of talking about them.  Ok, so enough about that soapbox and onto my point.

I ran a half marathon today. When we think about people who run marathons and even 5 and 10k's, we think of health nuts who are fitness over-achievers. But as I looked around today, there were people running and walking the half and full marathon who did NOT fit that stereotype. There were only people. Skinny people, overweight people, yes, those health nuts, older generations, a man with one arm, people running because it was their birthday, brides from the night before and young people.  People who simply said, "I can do this and I don't necessarily care what my time is, if I have to walk it, crawl it or be helped across the finish line." And yes, to my point, there are people who are unable to do it. THAT'S the difference. "I can't" usually means "I don't really want to", which is fine of course, but don't SAY "I can't" just say "I don't want to."

For many people with disabilities, they are unable to run a marathon, although given the chance, most of them would love the opportunity to do so. It's part of the reason I do run. I had a friend once who was fit, healthy, didn't abuse her body and took pride in the fact that she led that kind of lifestyle. And yet she lost her battle to cancer. I started running because I thought, she, more than anyone, would give ANYTHING to be able to go for a run.  So I did it for her. Do I like to run?  Not really. But it has become an easy form of exercise and a way for me to demonstrate that if you are able, you should.

Having a kid on the Autism Spectrum has made me realize even more, that there are things he is and will be unable to do.  And also, that there are many things he can do. He may very well be able to walk a tight rope one of these days. And he most likely will be unable to run a company as CEO. The difference between "can't" and "unable."  

There were people on the marathon today who were unable to finish because of injury or it was too much of an effort for their body. There were also people with determination, even with a disability that didn't affect their legs, that WERE able to run it and finish. I hadn't really trained for this run for various reasons including injuries myself, and at about mile 7 the pain kicked in to epic proportions. I winced with every stride, the sweat was more from pain that cardio and I wanted to quit. My feet hurt due to plantar fasciitis, my knees were killing me because of a weak IT band, my hips hurt probably due to deferred pain from my knees and I had stabbing muscle spasms in my upper shoulder.  Needless to say, it wasn't a fun race. But I kept telling myself that I was able to finish. I kept reminding myself, as I ALWAYS do in races, that there are things my son with autism won't be able to do and i AM able to do this, so i do. It proves to him, even though he wasn't there, that when he wants to give up in Math, when he wants to walk away from kids who aren't being nice, when he wants to abandon reciting his sight words, that he is able. And one of these days, probably soon, I will not be able to run a half marathon. And one of these days, my son will not be able to do something he wants to. And when that day comes, we will both be scorning the people who can.

Thursday, August 9, 2012

Slow and Steady


Sometimes you have to look at where you have been to see how far you have come...

August 2008:  

Scott we are not sending him to kindergarten.  
He is just a boy.
It's not autism, it can't be.
Let’s just wait a year.
He is just not ready, lots of boys benefit from waiting...

August 2009:  

Oh my god he is starting school.
He is okay it's not autism he is just different than other boys. 
have been twice for evaluation, they say keep waiting.
Okay wait.  Call from school.  Day three.  Serious call day 30.
"He is not alright."   I think it is autism.
Okay now wait for a new doctor for six months. Freaking wait lists.
Kindergarten teacher rocks. He loves school and her.

August 2010:  

Okay we've been officially on the spectrum for eight months.
Behavior therapy.   Speech therapy.  Para at school.   Social comp group.  
Stalked Facebook to get pictures of teachers for social story to get dressed and ready in time for school.   Praying daily for progress.  No friends.  No reading.  
Great start to the year.
December… he disappears again.  Rye-where do you go?  
Feeling hopeless but love all the effort of our school.

August 2011:  

Level 1 reading.  No real friends but trying.
Social stories for problem areas but not day to day routines.  Using Rye Cash (token economy). 
Take the plunge into medicine for attention.  
A Team at school that rocks beyond belief.  
Speech therapy. Behavior therapy. Social group.  Special Olympics.  Six medals.
Baseball.  Summer. Social group.

August 2012:  

No social stores needed.  Reading level 12.
My son has autism and I write a blog about it.
"Rye school starts next Thursday remember you need to be prepared for..."
"Mom stop I know what to do". "I hope Anthony and I have recess together".  

We aren't exactly where we want to be-but who is really?  
In reality we are in a place we never thought was possible.
Slow and steady.  
Lots of work. Lots of driving. Hours of therapy. 
Many ups and downs. 
A Team.  A Village.  
A school that is cooperative and focused.  
All completely worth it and one seriously amazing little boy.

Tuesday, June 26, 2012

Sixth Sense


From a very early age, Rye seemed to have the "sixth sense."  I remember one night in our Colorado home.  Rye was about two.  I was giving him a bath, he was playing in the water, I was leaning over the tub when he suddenly stopped playing, looked up and leaned to look around me, then smiled.  I assumed Tara had walked into the bathroom. I turned around to find no one standing there.  That's the first of many stories of Rye seemingly having a connection with a world that is intangible to most of us. I don't know who was there and frankly, it doesn't matter because they weren't there to see me.

I'm not an very religious person and am not in the practice of teaching my kids about things related to faith. So this next story stopped me in my tracks so to speak.  Rye was about 4, I picked him up from his pre-school here in Columbia and we were about to turn left onto a busy Broadway.  An ambulance was flying down Broadway, sirens and lights on.  As it passed, Rye's finger pointed and followed the back of the ambulance and said, "look Dad, angels!"

The next example is probably the one that gets me the most. When my mom received her terminal cancer diagnosis, she began writing little quips, quotes and sage advice to carry me through the rest of my life. Quotes from Van Gogh, exerpts from letters, Kipling, Lord Byron and more.  I took those pieces and glued them into this beautiful hand-crafted book that my cousin Suzanne made for me.  It sets on an easel in my office.  Rye picked it up a couple of years ago and was sitting on the floor looking through it.  Kind of an odd thing to grab his attention as a child, no pictures, no words he can read, no color… but yet he looked at it intently for a while.  He closed it suddenly, looked up and toward the window away from me and said, "he's your son?"

Who knows what all this means and one can rationalize these things and speak of coincidence and chance. I DO know, that on a random Saturday, he'll come flying down the stairs and exclaim, "my spidey sense tells me the ice cream man is coming!!!" (lo and behold, we'll hear the music and bells of the ice cream truck within minutes)  I think that for all the time he spends "tuned out" there is a lot of time spent "tuned in" to something we can't. Maybe he has a medium. Maybe our minds think too hard. And maybe neither are true. Rye doesn't talk a lot, and when he does, a large percentage of it is a script from a movie, so when original thought is expressed, you listen.  

I love the expression, "it is better to remain silent and be thought a fool, than speak and remove all doubt." So many people in this world yabber on and on and never really say anything, so when I think about Rye's lack of communication, I believe he subscribes to that thought. With his concrete thinking, why would you talk if you have nothing to say?  So with this sixth sense, comes a responsibility to communicate things not many can. And I think he takes it seriously, to caution us, to comfort us, to tell us things we have no way of knowing.

Saturday, June 16, 2012

I'm lucky

I'm lucky.

I married for love.  The kind of love most people unfortunately don't find.  It wasn't exactly instant or necessarily easy but the kind of love that grows from a commitment of mutual respect and understanding.   In the end this love produces a  fruit that is bountiful because there is a mystical connection that just works.  It doesn't need an explanation it just connects because it is meant to be. 

I am also lucky because I had the opportunity to grow up with a father who loves me unconditionally.  A father who raised me to believe that I could be anybody I wanted to be and with the expectation that I could live my life knowing that as long as I tried my best and told him the truth he would support every endeavor.  Adolescence proved to be a difficult commitment for me to my Father's rules,  but fortunately he was patient and willing to support me through the disaster that was my teenage years! 

I have been so lucky to love two men in my life. My father and now my husband.  When Scott and I first met I was not concerned about what kind of father he would be. I was just happy because he was the kind of man who after three years of dating and (wanting a change of scenery) would open an atlas in a bar and move with me to the page we turned to!  Yep that is how our love affair with one another and with Colorado started.  We opened an atlas and took a chance.


I also am lucky enough to have married a man who moved from the complete freedom of opening an atlas to the absolute commitment of moving from a life full of  easy going beautiful scenery to one of multiple therapy sessions in 90% humidity Missouri because it was best for our family.   

Parenting is hard.   Autism or not I can not imagine trying to do what I do without the love and support of my husband or my mom and dad.  I want to wish a very Happy Father's Day to my wonderful husband Scott Shade and my incredible father Bill Johnson.  I have learned so much from both of them.   I am who I am today and our boys are who they are today because of them.  I love you both!  My Daddy and Rye and Wyatt's Daddy.  I'm beyond lucky...I'm blessed. 




Friday, May 18, 2012

The question is? Who cares... Manamana!!


Am  I a Man or am I a Muppet?   Who cares?  Manamana!  

The Muppets are a familiar theme at our house lately.  I’m finding the comparisons pretty interesting these days.  

“Am I a Mannnnn or am I a Muppet, I’m a Muppet of a Man.”   Rye has been belting this out throughout the day and I can’t help but secretly think, I don’t know?  


Why not?  Being a man is hard.    Being a man is something I fear he might always struggle with throughout his life.

Being a muppet?  

It is pretty easy when you think about it.  You get to play a role and “be” somebody else. 

I mean think about it…

GONZO is the spirit of somebody who believes that he can be anything, including a person who can jump from a building without getting hurt while riding a motorcycle through a flame of fire and in the end you are so at peace with yourself that you get to marry a chicken.  

FOZZIE BEAR is somebody who is so confident that he sees himself as fabulous at doing anything,  no matter what life throws his way..  

ANIMAL is a drummer who has the know-how to take a moment and be completely free and do whatever he wants! 

MISS PIGGY brings the drama and gets away with it because it comes from a place of love.  

Last but not least, KERMIT who sees the best in everybody and always expects nothing more than he is willing to give himself.  

Throw it all together and what do you have?  Manamana!  Do Do Do!  Manamana!  Do Do Do!
 
Everybody has a Manamana.   Do Do Do!  

If you google it...go ahead do it.  

You will quickly find out that yes it is from the Muppets, current version and from the 1970s.  You will also find, according to Wikipedia, that  it is from a 1960s  pseudo-documentary about wild sexual activity and other behavior in Sweden!

I asked Wyatt what Manamana means and he said "it means something fun".  I asked Rye and he said is means "AHHH" and he ran to his drums.  

Manamana is the happiest of all feelings.  

For me, that is a ski lift and pressure to push myself down an “extreme area” with Amoo!  

It means don't worry about all the crap that life sometimes feeds you and just go with the flow! 

 It means be a part of the solution NOT a part of the problem.  

It is also the new thing that I think I am going  to say when someone is staring at me because my kids are doing something the other person thinks they shouldn't be doing.



Monday, May 7, 2012

A letter from Mom...May 8, 2012

 Dear Rye,

Happy 9th Birthday.   I can't believe that you are growing up so fast.  Mommy and Daddy love you so much.  I can't believe it has been nine years since my life changed forever.  I remember it like it was yesterday.  Your delivery wasn't easy but the minute the doctor put you on my stomach I knew you were special.  My heart snapped a shot of you laying there and I will never forget it.  My heart grew three sizes that day and it continues to grow a little bit everyday of your life.

I hope when you are older you can read this letter and understand how completely amazing you are.  I hope you are able to look back and understand how hard you have worked from the beginning.   When Dr. Kanne told me you had autism I knew instantly it wasn't going to stop you.  I knew no matter what you would be fine.  You have always been fine, your dad and I are the ones who worry.

We have had nine fabulous years and here are nine things you have taught us:

1.   Sometimes things need order.  It is best when life if predicted and planned.  In reality this helps all of us.  It is okay that you like your world to be this way.  Thanks for giving me a reason to FINALLY get organized!

2.  Silence is comforting.   Sometimes it is okay and completely fabulous to take a moment and be completely wrapped up in yourself. 

3. It is okay to like what you like even if others think it is weird.  Be who you are and let your freak flag fly!.   I will ALWAYS love this about you.

4.  "The force" does exist.  Sometimes it is the strength we all need but can't find.  I'm so glad it will always be with you.  You believe it and we believe it too!

5.  Having "lots" of friends isn't necessary.  As long as you surround yourself with people who love you and understand where you are coming from it is comforting.  Approval of the masses isn't necessary.

6.  Red really is the best color.  I love it, you love it, and being BOLD is completely awesome and brave. 

7.   The ability to be completely accepting of others is a gift.  I see you at Special Olympics and Challenger Baseball and I will forever admire your ability to see a person not a disability.

8. The ability to see what you want to see.  The ability to take a moment to view life from a positive perspective.  There are no inhibitions.  There are no concerns about the judgement of others.

9.  Unconditional love is the most amazing gift of all.



Thank you for loving us and opening your life to us in a way that is not always comfortable for you.  We love you and we will never doubt how much you uniquely love all of us.

Happy 9th Birthday Rye!


Saturday, April 21, 2012

I am guilty...

It is the third week of autism awareness month.  I have not written a blog in weeks. I have taken the month to do a little personal reflection and to be completely honest...I don't like what I see. 

When we started Autism Pirate it was for all the right reasons. We wanted to share our experiences and help others who were starting out on their journey if we could.   I feel like for me (I won't speak for Scott) I am guilty of letting that goal get away from me a little bit. 

For those of you who are not autism parents there is something you need to know.   Some of us are competitive. Just like most moms, soccer moms included, we secretly judge each other and ourself by comparing our "situation" to one another. 

When we do this, "our situation" can for some, turn into (sigh) I will just say it... an "all about me party".  It is hard to admit but I'm really GUILTY.  Our blog has gotten a lot attention which is awesome but I will admit it went to my head, not a little but a lot.   I am so submerged in autism because it is my home life and my work life. I was letting it take over in all the wrong ways.   I kind of feel like I have an autism headache.   

The past few days I have finally been able to sum up how I have been feeling for the past few weeks.  It started when I watched this amazing video about a family and Mom that I have had the opportunity to get to know over the past few months. Becky (mom in the video) has left a lasting impression on me.  I have never met a mom who is so committed to doing absolutely everything imaginable when it comes to learning.  I'm amazed and inspired.


On Friday, I attended a workshop at the Thompson Center Conference by Scott Bellini that REALLY got me to thinking.  Bellini said one thing that truly resonated with me.  "Just because we put someone in a social environment, it does not teach them the skills they need in that environment to be successful.  They have to learn to STOP, WATCH, and FOLLOW".  This hit home.  Rye has access but he does not have the skills.  We have to teach these skills to him. This takes time and a commitment that I have not been giving my full effort.  


Finally, today Rye participated in his first Special Olympics swim meet.  I was taken back by the love, support, and understanding of so many people.  Today my boy was an athlete who encompassed the Special Olympic oath of:  "Let me win.  But if I cannot win, let me be brave in the attempt."  Today my boy won and he was brave in trying something he had never done before.  He also made his family so proud and gave his mommy one gigantic gut check.  


This journey is absolutely 100% not "about me".  The party is over Tara Shade.  Our journey is about living life to the fullest.  Finding absolutely every opportunity for growth and learning.  For my boys, and for me.  I have had a moment.  I am moving in a new direction.   


I'm getting back to the basics.  I want to focus my time and energy on learning about the most effective and cutting edge treatments. I want to implement these treatments with my son and folks I work with at my job. I want to raise money for treatment and services through Ella's Hope. Hope has always stayed focused on treatment which is why I love her. 

I will grow, learn, and "check" myself all the time to ensure that my vision and focus stay on what's important. 

My boys. 
My job. 
My family. 

Nothing else really matters. 

Awareness month for me this year has been a big dose of self-awareness. I am rejuvenated.  I'm moving forward.  I was guilty but I have recognized it and I am moving on!   

Monday, April 16, 2012

The Movie is Better Than the Book.


How many times have you heard that? Probably not as many as the reverse of that statement. Rye LOVES movies. We let him watch a lot of movies on weekends because he doesn't get that privilege during the week, and he works really hard Monday through Friday. We first noticed the advantage to "vegging out" to movies when he started playing baseball last year. The first few games were horrible. Fits about not getting to field the ball every time. Fits about not being able to run past first base. Fits about the game being over. And so on… Then along came a movie called The Sandlot. Wow! Within that movie, came the power of understanding the game of baseball. Also, came the phrase, "you play baseball like a girl!" (but that's a blog for another day!). But because he loves to watch movies, and they capture his attention like no other tool we have, we can effectively teach Rye many things with a movie as a reference.

Yes, we feel guilty about the amount of time he spends watching movies on weekends. Yes, we feel like it's a cop-out at times to use a movie as a teaching tool. And yes, we wish it were different. But it's not, and as the saying goes, "if the shoe fits…"


So i wrote a blog not long ago about how Wyatt and I play basketball. We're always trying to get Rye to play with us and rarely he does, or IF he does, he really doesn't want to. I rejoiced a few weeks ago when I asked him to play and he said, "ok, but only for 10 minutes." Then guess what? Along came another movie… (you saw it coming) Space Jam. This past weekend, I couldn't get Rye inside because he wanted to play basketball. At least three times on Saturday, he dragged me out to play a game. We play at our neighbors, they have a "low" rim and is perfect for Rye and Wyatt. So the three of us started a game and were having a blast playing a game of basketball. And Wyatt… was REALLY on cloud nine because he's always trying to get his brother to play something other than light sabers.

We were playing (them against me), and the neighbor kid comes out to play with us. I quickly calculate what the best team options are for RYE… to have a successful basketball game experience. I do this all the time, and yes, again, with guilt toward Wyatt because I know he can adjust and adapt more easily than Rye. So Rye and I vs. Wyatt and Trevor. Now comes the second major calculation… who wins the game? I'm old, but i'm twice the size of all of these kids and the rim is at my head. I decide that Rye needs the experience of losing a game. And so he does. As anticipated, he has a pretty big fit about it. But later that day, we go out for another game. This time it's just the three of us and Wyatt and Rye beat me. Our life is about calculations and creating teachable moments with every activity. But first we have to get Rye to engage in the activity. And for that, we love the power of the movie.

Sunday, March 25, 2012

Who really cares...

On Saturday we had a "situation" that seems to be happening more and more.  Wyatt was invited to a birthday party for someone in his class, which is great, he was very excited.  The party however, happened to be at one of Rye's favorite places to go, the local recreation center for a swimming party.  We never really know how to approach these situations because we don't really know what Rye's reaction will be.  He knows about birthday parties because he has them with family and Wyatt had a big party when he turned 5.

When Rye was in preschool he would get invited by school friends, but since entering elementary school Rye rarely gets invited to a birthday party (actually one in three years).  Yes, this is sad.  This is something that makes me hate the whole social ritual.  Rye doesn't really seem to care, or at least he doesn't speak of it, so I don't really know how he feels about it or if he is aware that he doesn't get invited.

So for yesterday's party, we decide that Scott will take Wyatt to the birthday party and I will spend the day with Rye.  We had a couple of errands we needed to run. We stopped in at Klunk's bike shop to get Wyatt's tire fixed, headed to the mall for lunch at Subway, rode the train at the mall, hit the candy store and went to the Columbia Public Library, or as Rye would call it, the "yellow beezle".  He has called it that since he was little.  Rye played on the computer and requested to find a book on foil fencing.  He then moved one of the cushion chairs to the window that overlooks the street and got comfy.

When Rye wants to remember something he always asks us to take a picture of him doing it or he uses my phone to take a picture of it. This is what today looked like through Rye's eyes.
























Notice something?

There are no people other than himself.

I have a feeling Rye could give two hoots about the birthday party and all of that worry and concern is on me.  I'm the one who wants him to get invited.  I'm the one who wants him to "want" to go.  I'm the one who is constantly judging whether or not he even understands that he never gets invited and the whole reasoning behind why he doesn't get invited.  I guess I need to just let it go.

I will never stop pushing Rye to be more social.

I do however need to give him a little more credit than I do most of the time.

On the way home I asked Rye if he had a fun time today and he said "sure I did".

I then said, "me too Bubble, what a fun date we had."

Rye replied with "Gross mom!  WE did not have a DATE."

"Why?" I asked.

"A date is when two people get married and there is LOTS of kissing."

Guess he is a little more informed than I think... He just cares about what he cares about and most of the time that does NOT include birthday parties or other people.



Wednesday, March 21, 2012

Rye's friend Roy

Roy G. Biv. You remember that guy. Introduced to you by your favorite art teacher in junior high as a way to remember the colors of the rainbow spectrum. I always remember the difference between Disney World, and Disney Land by the “o” is Florida and the “a” is California. Last night in the truck, Wyatt blurts out “Never Eat Soggy Waffles”… (his way of remembering North, East, South and West). We all have those tricky little ways and acronyms to remember things. Wyatt and I kept coming up with them… Never Eat Shaggy Wool… then we went backwards, Wyatt Shade Eats Noses. And it went on. Rye didn’t chime in, I don’t think he was able to process what we were doing or talking about. But when it comes to colors, he has it down. Down to Roy G. Biv. Now whether he’s conscious of the acronym or not, he will always know the order of colors, as evidenced in the photo below as a way to organize his sharpies.

We’ve talked about Rye’s “rules” in the past and how if there’s rationale behind something, it should be done that way every time. Why would you go a different way home? It doesn’t really make sense. Why would you say “what’s up?” if you didn’t mean what is above you? Why would you break routine?

I can’t crawl into Rye’s brain and explain it, but my best guess is that there’s a lot of missing connectors in Rye’s world and routine, order and rules are a great relief to him. Just like last night when Wyatt and I were coming up with different acronyms for directions, Rye was probably saying to himself, “if Never Eat Soggy Waffles” is what you learned in school, why on earth would you need to come up with more?” I would guess that rules and routine help him automate tasks when so much of life is trial and error. I think he spends a lot of time trying to put the pieces together and WORRYING about how things connect, and why people connect things one way one time and another way the next. And I’m sure it becomes overwhelming. And exhausting.

Our best success with Rye has always been, “first we’re going to eat, then we’re going to put our shoes on, then we’re going outside to play.” Prediction and establishing an order of events has always helped him transition and go with the flow better. There are so many colors that I’m sure Rye is VERY thankful for his friend Roy G. Biv. We’re ALL very thankful that Roy is available to organize Rye’s colors and relieve a little of that chaos.

Saturday, March 17, 2012

I've got a BAD feeling about this...

Yesterday my sister-in-law Susan said to me, "I think I need to watch more movies so I can understand what Rye is saying."  I had to laugh because I totally agree. Wyatt and my niece, Kylee understand what he is saying more than we do because they have seen the movies he is scripting from.  I thought it would be interesting to think about the top 5 things that I hear him say in pressure situations.  The results were pretty amazing.






I think that when Rye is feeling pressure or stress he goes to the language that is familiar.  The language that he understands because it comes with a visual understanding.  Most people who hear Rye scripting in the neighborhood or in the line at the grocery store probably have absolutely no idea what the heck he is talking about. If you take the time to really look at what he is saying it is pretty amazing to see how he is able to apply language from movies to the appropriate context in his everyday life.  

Sunday, March 11, 2012

Empowering Your Children.

There are many ways to approach parenting. Growing up I had friends whose parents would literally whip them with a belt for discipline. I had friends who would cuss out their parents and walk all over them. And most of my friends fell somewhere in between. Tara and I do not claim to be any sort of experts on parenting and have a long list of entries in the "parent fail" column. But having a child on the spectrum has made us very conscious of every discipline strategy, every measure of behavior, every intervention when things are going south, or going well. And we're well aware of our mistakes!

The friends that I had who were physically disciplined were among the most "well behaved" kids i knew, who rarely got in trouble. Were never arrested. Were never suspended from school. Were never pregnant and 16, Never did drugs… and so on. That's not surprising, they were completely scared. Their parents achieved what they wanted, well-behaved children. But at what cost? Who knows, and I'm not here to presume or judge. This is what i know to be facts with the children Tara and i have. We choose our battles. Empowering your kids to make their own choices instills confidence and trust. For example, I ask my kids what they want for breakfast. Unless they say a bowl of sugar, it really doesn't matter if they choose fruit loops or applesauce. We can always throw in something healthy to balance their choice and they've still made the choice (and will most likely eat it all anyway).

"What do you guys want to do today?" "Go to Colorado skiing." Ok, then we have a situation if we're not going to Colorado. So we have to say, "no, we need to think about other choices." But what we've learned, with both of our kids, but especially Rye, is to give them choices, but very specific choices. Instead of "what do you want for lunch?" we say, "do you want a ham sandwich or a hot dog?" The former is too abstract for Rye and so generally his answer will be "I don't know." To Rye, "basketball" is an option for lunch but he knows there something about it that that doesn't sound right. "This" or "that" narrows his focus, are two very understandable choices that empower him to decide, and are within our parameters. This is our life.

"Do you want to do your Math homework or practice your spelling words?"

"Do you want to watch Star Wars or Cars 2?"

"Do you want to go to the store with me, yes or no?"

We can't completely gauge the future success of our children's lives or happiness, but we can gauge it now and we're pretty satisfied with where we are. We mention the "formula" a lot. These strategies are also part of it. Is there bad behavior? Yes. Is there non-compliance? Absolutely. Are there still crying fits and melt-downs? Of course. But that's all part of it. I love the bumper sticker "well behaved women rarely make history." Not that i want bad children, but I'm also not crazy about the idea of my kids being afraid to speak, have an opinion or make a decision either. "Spirited with the best intentions," is where i'd like them to land!

10 things I wish I knew before I figured them out the hard way...

I'm feeling inspired today after reading this wonderful article on Huffington Post Women.  I read a lot of blogs and articles and many that identify "Top 10" things to do, etc. I'm going to start a series of blogs that feature my "Top 10" ideas or thoughts about various topics.

First up.

10 things I wish I knew about autism before I figured them out the hard way.
  1. The first time Rye does something is how he thinks it is going to be every time we do that activity again. I realized this while I was attending a workshop by Aaron Likens. Aaron has autism and he is an amazing speaker. He talked about how doing something a second time is really difficult for him at times if it is not EXACTLY like it was the first time including order of events, where he ate lunch, what he ate for lunch, etc. In retrospect I totally agree that this is true for Rye. I can think of numerous activities that we tried, things went great so we wanted to try them again. The second attempt ended in a meltdown and a need to leave early due to behavior.   
  2. Denial doesn't teach anybody anything. If you are worried that it "could be" something, it probably is. Trust your gut. I knew early that Rye would be present one minute and then appear to be in his own world the next, I just didn't know what it was that made him appear to "leave us" for periods of time. When he was a toddler and I would feel my "gut" kicking in, I would lean into him when he was sleeping and say. Stay with me don't go away... stay with me, Mommy loves you. Trust your gut and your perceptions of your child's behavior, they are probably right. 
  3. Rye does not know how others feel in most social situations. He does not employ theory of mind. I blogged about this several months ago. Sometimes I am easily angered by Rye's lack of compassion toward others. I have to constantly remind myself that he struggles with understanding how other people feel because he really doesn't know how to look at things from someone else's perspective. 
  4. If he knows about it in advance, he can handle it. If he doesn't it is really hard for him to handle a change that has not been predicted in advance for him. 
  5. Sensory sensitivities DO exist and they matter. I love this clip from the movie about Temple Grandin that was produced by HBO. Claire Danes who plays the fabulous Temple Grandin in the movie talks about how sensory sensitivities feel for her. 
  6. I do not have to be an expert about ANYTHING and the best thing I can do when I don't know is to admit that I don't and find somebody who does. Investigate all the services in your area. We really feel like it is helpful to hear the perspective and suggestions of as many professionals as possible. We receive services from multiple agencies, don't feel like you have to choose one agency and receive all of your services from one place. Your only real obligation is to your child. 
  7. Thick skin is required. There is always going to be judgement. With advocacy comes skepticism, but education is the biggest component of change. There will always be people who interpret your mission differently than you do. Ignore this. It doesn't matter. Let judgement be the concern of others, not your own. 
  8. Anxiety, Anxiety, Anxiety. Most of the time it is the freaking anxiety that gets him. 
  9. Baby steps matter too. Set realistic goals and the bigger ones will happen. 
  10. Find an outlet and a way to vent your frustrations, receive support and turn your journey into something positive for everybody. My outlet is writing on Autism Pirate, finding support from a fabulous Mom's group called Mothers of Children with Autism, and giving back to the autism community by raising funds for Ella's Hope for Autism



Wednesday, March 7, 2012

A Long Way to Go and a Short Time to Get There

We just had our boys’ Parent/Teacher Conferences. We’re so relieved to report that both are doing fantastic. Wyatt is in Kindergarten doing First Grade math and everything else is right on target if not a little above where he needs to be.

Check.

When we go in for Rye’s P/T Conference, we’re met with a title one reading instructor, a special education teacher, an aide, his speech therapist and case manager and his teacher. All of them report that he’s doing great. All of them report advances in his skills academically, socially and emotionally. They even say he’s more confident and is eager to share ideas and announcements with the class. This is a 180 degree turn from this time last year, where we all sat in the conference sort of bewildered and desperately grasping for something positive to say, something good to report… something to build on.

It was this time last year however, we realized we had to dig in, regroup and get going!

He’s gone from a ¾ to a 13 reading skill level in five months. He’s gone from simple site words to words with complex sounds and spellings. His writing is much improved and his math, is… well, getting there. He excels in geometry and is grasping money and its value. All are great things and great reports for what is expected of him.

We’ve often seen these little “spurts” and know that there will be bumps in the road. The question is, how big of a bump and how much will it throw us off our course. Part of the answer is to stop thinking about what’s ahead and concentrate on pouring as much information into his brain while we have this “window of opportunity.” Everyone is vested in him and works hard to give him as much information as possible in what may be a short time before the next bump, so that after that derailment and lost time, we can be in a fairly good place coming out of it.

For parents like us who are in that desperation mode, it WILL improve, you WILL see progress and positive growth in major spurts like many people do with their typically developing kids.

But for us, it meant digging in with new strategies, a new evaluation at the Thompson Center, reevaluating our method of motivation, and upping our game.

We could no longer be lazy/tired parents (when we really are).

We couldn’t afford not to listen to Dr. Severtson and her guidance and recommendations.

We couldn’t pretend he was doing okay when he wasn’t.

Intervention, strategy, plans and hard work are the only things that are going to get you to a place like we are today. It’s a hell of a lot of work, effort and strength, but when you have a successful Parent/Teacher conference where everyone is SO excited to talk about him and his growth and enthusiasm, it’s worth every hour of table time, therapy session, extra teaching opportunity and fit over engagement. So, for now, we’re feeling really great about our direction, our strategies, our progress, our support, our formula… and it’s such a welcome place to be.

Monday, March 5, 2012

Moments of clarity

Friday morning Scott woke up to Rye poking him in the head telling him to "wake up"! He said he was going to make breakfast for all of us.

I slept through this whole exchange and woke up several minutes later and heard banging in the kitchen. Scott was back asleep.

I yell downstairs to see what the heck is going on.
Rye yells up, "I waked up and my spidey sense was tingling... it told me to make it look like the map that the kids drew."
 I am confused and half asleep.
"What Rye?"
"I'm making breakfast Mom and I figured it out."
"Figured what out?"
"Silly rabbit tricks are for kids."
"Mom the cereal is not for the rabbit, silly."

I walk down to the kitchen and I find that Rye has in fact made breakfast for the entire family.

Rye is happy and is so proud of what he has done.  He then chimes in with typical Rye scripting of, "I hope the sand man doesn't ruin our breakfast."  I say "what?" and Wyatt translates that "it is from Spiderman."


We finish up breakfast and begin the typical rush of getting dressed, brushing teeth, and (if there is time), brushing hair.  Rye puts on his coat and says to me, "Mom, I feel lost from my dreams. That is what is bothering me. My little bug Rye takes everything in my eye and I can't remember."  

All of this seems silly and does not make a lot of sense for people who don't know Rye but I really think he was trying to tell me that he sees things in his mind's eye and he can't really  figure it out, but he is trying his best to make sense of it all.  As parents of children on the spectrum we have to take these moments to interpret what our child is really trying to say.  Even though it doesn't make sense to everybody it makes sense to us because we know our child more than anybody else.  Silly little sayings that "typical" children say on an everyday basis can mean the world to us because even though they are non-nonsensical we know what they mean because they our ours, we get them, we know where they are coming from even though the language doesn't make sense to everybody.  The "moments of clarity" that only our family understands.   

 I live for the moments when Rye is mindful enough to wake us up to make breakfast (on a school day) and it is as if he enters our world for a moment.  The amazing thing is that I feel like he is tapping into my world more and more and I am so excited for all he is learning to communicate on a level that I understand.  Clarity for him, Clarity for me. I love this boy and I am so proud to be a part of his journey.  


Monday, February 27, 2012

the red crayon

Rye loves red. It was an early obsession that made up a huge component of his restricted range of interest. When he was three he would not leave the house unless he had three red treasure rocks in his pocket. If it was red, in his world it belonged to him.

Cedar Ridge Elementary has crayon’s hanging in the hall. One color per room as a way to visually teach kiddos where rooms are located.

Last Friday. Parent/Teacher conference day. 8:00 in the blue crayon and 8:15 in the green crayon.

A lot of feelings typically surround these meetings and more so for IEP meetings for parents of children on the spectrum. When we started school I was told by many parents to “be ready to fight”, “the school district doesn’t do anything”, “you will have to sue to get what you want”. So many go into the school experience with what could be perceived as a negative attitude. We have learned through our journey that if you expect the worst that is probably what you will get. I’m so glad I did not listen to people who told me to go in fighting. For us we have had a collaboration that is remarkable. We love our school. We love the people, we love the atmosphere and most of all we love the willingness to cooperate for the sake of the student who needs it most. We have been blessed with many fabulous teachers over the past three years. All different, all bringing a unique perspective and all willing to put forth an effort for a boy who in reality does not really care for any of the dynamics that typically make school a success.

We have also had the dynamic of a team leader who does not always have the easiest job. She doesn’t always get to be the one who the kiddo likes the best, she is certainly never the most popular, she is the one who (god love her) my son called “Pink Pants” for two years because his Kindergarten teacher jokingly said it one time in passing. She is the one who has to deliver the news to parents and (teachers for matter), that you don’t want to hear. For us, at times we have disagreed, we have fought it, and then we end up eating our words because after we take a moment to remain open we realize that it is okay to trust in a system that despite its faults, for the most part, actually works. It is also completely clear and appropriate that our team leader is fittingly located in the red crayon of Cedar Ridge Elementary. How wonderful for my boy to find comfort in the red crayon, the place where Rye goes to learn and receive support, the place to retreat when school just sucks.

Because of our situation I spend a lot of time in meetings at schools, I understand how easy it is to blame others for your child’s difficulties. I also understand that for some who are not as lucky as us there is and will be a time for due process.

Here are a few simple facts that have made all the difference in the world for us at our school:

1. Be appreciative. For the most part, Teachers are there because they want to make a difference. They are clearly not in it for the money.

2. Be a part of the solution, not a part of the problem. Volunteer, involve yourself in the school, and take the time to really know what goes on in your child’s classroom.

3. Show up, make yourself present. Don’t ever assume what is going on in a classroom, observe, watch and you will probably be pleasantly surprised at the amazing things happening.

4. Make your teacher like you; they will then like your child. It is important to try to get along.

5. Bring food! I have yet to show up at an IEP without a snack for all to share.

6. Come in with an attitude that it is an entire building supporting your kiddo, there is no staff that is not involved in some way in the education of your child.

At the end of the day, it doesn’t matter what color the crayon is. But what you should realize going into the school, is that there are possibilities in all of the crayons. There’s a time to fight and there’s a time to kill ‘em with kindess. Mostly, from our experience, it’s the kindness, the listening, the willingness to be open-minded, that will provide the best results for your child.

Wednesday, February 22, 2012

Milestones and Bravery

As a parent, you see your children develop and it's very exciting and fun. You watch as they learn, mature and master skills. I remember Rye hit a milestone at 5 months. I can't even really remember what it was really, but it seems now like it was this awareness he had of his surroundings and he advanced out of infancy. But I remember it like a light switch went on, and just like that, one day… he woke up and had a significant advance in his development. With Rye, it's always been the case where he mastered a skill before actually incorporating it. For example, he teetered around walking for weeks, then one day he walked across the room and never looked back. Same with potty training. And riding his bike without training wheels.

Recently, we have seen him learn to read. He's advanced from site words to reading sentences and sounding out complex words in a matter of months. This obviously wasn't mastered as quickly as walking, or potty training or riding his bike… but that's understandable and we still have a long way to go. Some things take more time and a higher degree of learning than others, and when it's harder for him to master, the more resistance he has to doing it. Most of us can relate to that. But the most encouraging thing about this journey is seeing Rye's bravery develop. It can be hard for all of us to learn new things and it takes courage and a certain level of bravery to do so. I remember, not so long ago, the meltdowns that would last for hours over the smallest things, like "turn the movie off and come wash your hands." We're seeing less and less tantrums, that last for less and less time. Part of this is maturity, part of it is therapy and part of it is discipline and consistency (on our part as parents, not Rye's).

We've mentioned before about our fine little line between making him engage and do things with others for the sake of development, and NOT forcing him to do things for the sake of everyone's sanity! But the tide is turning and transitions are becoming easier for him. Wyatt loves to play sports. Last Fall, we started playing football in the backyard. I would make Rye play for 10 minutes (albeit in his Storm Troopers suit), then Wyatt and I would play lightsabers for 10 minutes. VERY reluctantly, he would agree. Week after week, game after game, we'd negotiate how many possessions, how much time we'd spend playing football vs. lightsabers. Wyatt's new thing is basketball. This past Sunday Wyatt came in, said, "Dad, let's go play basketball." I told him to give me 10 minutes and I'd be out. I was putting on my shoes, Rye was playing Wii, and I thought, he needs to play with us. So I shouted up, "Rye, come shoot baskets with Wyatt and me." Waiting for a whining denial, I was surprised to get a big sigh and a "oh, ok, but just for 10 minutes." I almost fell over. This was huge. And the biggest thing about this was there was no negotiation and he didn't tell me we had to play lightsabers afterward. Sunday was another notch up the bravery scale. Sunday was a milestone.