Saturday, November 2, 2013

Check out monthly "Tips" from me on Alternative Community Training website

Most of you know that I work for a great organization here in Columbia called ACT, Alternative Community Training.  I will now be writing a "tip" a month on various ideas and strategies on the ACT blog/newsletter.  I hope that parents, grandparents, or even teachers can find the ideas helpful.   You can find the first "Tip from Tara" blog here.  

If you have any ideas,questions or topics that you would like me to write about please leave me a comment here or on our Autism Pirate Facebook page.  

ACT, founded in 1975 is a not-for-profit, nationally accredited, (by CARF private agency which provides services to over 400 individuals with disabilities throughout Mid-Missouri annually.

I actually worked at ACT during college as a direct support staff and for the year after college I spent in Columbia before moving to St. Louis when I begin working for Becky Blackwell at Judevine Center for Autism.  I worked in the residential services program that is now a part of the program at Easter Skills Life Skills.  Both Judevine and Easter Skills Life Skills provide services to many individuals across the state of Missouri.  

I have always said that every job I've had has prepared me for the next, ACT to Judevine Center to Case Management in Colorado and back to ACT.  I guess for me, all professional roads start and end at ACT, at least for now anyway!  Who knows where my professional life may lead me, but for now I am happy working for an organization that provides many outstanding services to both children and adults.  If you would like to follow "Tips from Tara" checkout our website or "like" the ACT Facebook page here.

Tuesday, May 7, 2013

Happy 10th Birthday Rye!

May 8, 2013  

Dear Rye,

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.  

4.  "There's 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  

10.  Life 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!



Monday, April 1, 2013

Day 1 of 30- Let your child be who they are and you just might learn something!

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.

Sunday, March 31, 2013

Light It Up Blue!!

  • 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 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.

Thursday, February 28, 2013

Look at us now!!!

Written By Guest Blogger:  Tammy Wheaton

This Blog is a follow up to DEAR $450,000 Powerball Winner!

Tears stream as I read my last blog and my frame of mind a short three months ago, and it makes it even harder to believe where we are now!

The past three months were filled with ups and downs...behavioral and emotional.

We started seeing a DAN! (Defeat Autism Now) practitioner in Jefferson, City, MO. When the autism center tells you to seek alternative treatment and insurance denies you, you have to take matters in your own hands. I had always wanted to go the biomedical route but as a single income family, which I am sure many autism parents can relate to, you go the medical route first that insurance WILL cover. Most DAN! Dr.'s do not take insurance and I wasn't able to afford the initial $2500 visit (plus supplements). So I was glad to find a DAN! Dr. who would take our insurance.

Our first step was to take him off of all sleep meds (not dr. orders, we just wanted to)...he slept fine. The Dr. recommended a few things we tried, the casein free diet, spring water instead of tap, baking soda and epsom salt baths, cooking with coconut oil, etc. I will have to say this formula worked for a couple weeks! We had a much happier kid, lots of smiles, more engaged, improved GI functioning, etc. It was going fabulous, and we started to ask ourselves...what if KKI calls? Would we still go?

I should also say we had implemented new behavior protocols in our home therapy and at school that were also working well! 

Then I took the next Dr. recommended step which was to introduce supplements...and things spiraled downward...then gluten free...things spiraled more. There were times we thought things were "better", but still having 300 instances of head punching during a 30 minute data sample of day was by all means severe. I would think, what if KKI calls, would we still go...anyone in their right mind who didn't live it every day would say YES!!! 

We got the call Feb. 8th to go get his monthly "nose swab" to test for MRSA because they had a bed coming available at KKI, and they wanted to give it to Beau. We didn't get too excited. This was the third call, and by now we had experienced such disappointment it seemed hardly worth it. I don't know what MRSA means, but for me it means calling the lab to make sure the lady who had done the nose swab on Beau the last 4 times was going to be there because she knows what to expect. She was, so we went, not too hopeful.

On Feb. 11th the finance lady called and said they had a 7 day insurance authorization, and they had a bed available for Beau....excitement started to build. On the 12th we were just waiting on the MRSA test results and we could start driving. On Feb. 13th we got the OK to start driving. We loaded up in Columbia, MO at 5 p.m. and arrived in Baltimore, MD at noon on Valentines Day! 

They met us at the door and whisked Beau away "to the unit"...and "whisked us to a room to meet nurses, psychiatrist, behavior teams, social workers, speech therapist, unit supervisors, etc. and endured 5 and a half hours of questions and assessments with no sleep. We were very glad to see the Ronald McDonald House that evening

Got to say here the RMH was amazing! To be able to stay in a private room for $15 per night and get free home cooked meals twice a day was a true blessing. Not to mention meeting families of other children "on the unit". The first family we met of a 15 year old with severe aggressive behaviors had intended to place their son in a residential facility because they couldn't do it anymore....after 3 months at KKI, they are taking him home. This gave us so much hope. We knew we were in their shoes when we laid eyes on them, it was like looking in a mirror...6 years from now.

KKI is amazing. They are taking data on his self injury and aggressive behaviors 24 hours a day. He had 1200 instances of head punching the first day. He has been there 14 days today. They are still performing functional behavior analysis to determine the cause of his behaviors. They do not yet have a treatment plan. His behaviors are complicated, and as of today they do not have a clear picture of why they are occurring. It appears attention is a primary function, but they break things down so minutely that they will know exactly why...

Tears again...I know many of you reading this are parents of children with find out why these behaviors occur...after countless hours of wondering, guessing, passing medications, diet changes, supplements, doctor visits, crying, screaming, hurting, praying to God, asking God why...even the mere possibility that I could get these answers makes leaving him there worth the pain.

He will stay in Baltimore for 4 to 6 long as the insurance holds out...which is still a fight. They approved a seven day admission...they denied the next seven days. KKI has appealed that decision. They will have to do this every week he is there. They assure me they always get paid. They do the fighting for us.

As I write this we are on our way home from Baltimore, MD. My heart is in Baltimore, and I will wear a locket with his picture and a heart around my neck every day he is there. We will get weekly updates from the behavior team as they analyze these behaviors. We will get a phone call from him each night, and I pray I get to hear his voice. 

When this chapter is over we will come home with a rock solid behavior plan which I will die daily to implement. We go back in 27 days for trainings and parent meetings. I look forward to the outcome, and I hope and pray KKI opens a whole new world for Beau. My hopes are high for Beau to be able to navigate this world and live in a community of supports just for him which he so rightly deserves; and I pray he is unleashed from the prison of behaviors which have robbed him (and us) of countless joy, moments, and experiences that so many take for granted.

Wednesday, February 20, 2013

February 20th

It's February 20th.  To most it is a typical normal day. For most of us we have work, we have family and we do our best to balance life as we know it raising our children. We take the tough moments as they come, secretly thinking that our life is harder than everybody else that we know.  All of that being said, most of us, never have to deal with the one thing that enters all of our minds as a moment that could change our lives forever.  Scott and I deal with a lot.  If you are reading this blog you know because we journal it here.  I thank God every day that no matter how bad it gets, we have never had to face something that we couldn't handle and God willing I will never have to deal with that in our lifetime.  

There is never a moment in our world when we hear bad news or we discover a set-back with our son that I don't think about how fortunate and thankful we are to be blessed with the our gift that is our life.  We are always reminded of how fortunate we are because of the Borisenko family.

I wrote the following blog for the Columbia Daily Tribune almost a year ago but tonight I am thinking of the Borisenko Family and every year at this time I will think of them and many days in between:

Holiday cards.  Most of us send them and enjoy getting them.  When Scott and I lived in Colorado we loved the annual correspondence because for most of our Missouri friends it was the only connection we had all year.  It was a way for us to connect with our high school, Mizzou and St. Louis friends.   There were many cards that I always looked forward to opening. 

For me one of my favorite cards was always a family that I didn't really know because they were Mizzou friends of Scott’s. I felt a connection to them because Scott always talked about how much fun they were in college.  The Borisenko family.  Every year we would watch the family grow.  One boy, then two, then three and finally four.  I remember watching the cards and thinking, oh my,  how on earth does somebody have the energy to raise FOUR boys?  The card always depicted a beautiful shot of a summer trip or beach scene that instantly took you to a vacation or day of fun that you knew was a memory that the family would enjoy for a lifetime. 

December 2005. I will never forget the day I opened the Borisenko holiday card.  I opened the card and my heart stopped.  The memory is still so vivid.  I was standing in the kitchen of our Colorado home in disbelief at a card that now had only three boys in the photo.  I had checked the mail during the day because I was on maternity leave having just given birth to Wyatt.  I quickly called Scott at work.  “Scott what happened, oh no, what happened?”  I explained what I was looking at and we were shocked, saddened and overwhelmed with the news. 

Scott quickly searched the internet and was able to find out what had happened.  We were devastated to learn that John and Shawn’s youngest boy Riley had died.  We didn't know what to think or feel.  I remember that Riley was close in age to Rye because in previous years I thought it was interesting that their names were so similar. 

We learned that Riley died unexpectedly and there was no real explanation.  We quickly learned about Sudden Unexplained Death in Childhood (SUDC).  Riley was a healthy, happy boy who took a nap because he was feeling a little under the weather, and he never woke up.  My heart still sinks when I think about it.  I remember praying for the Borisenko family and at the same time thanking God that I had two healthy boys of my own. 

When we learned of Riley’s death we did not know that Rye had autism.  All we knew was that we were so lucky to have two boys who were healthy. 

Now that we know Rye has autism, all we know is that we are so lucky to have two boys who are healthy. 

On this journey it is easy to get caught up in the pity-party of how hard this life is for us.  How hard it is for our boy to communicate, understand and interpret the world he is living in. 

But in reality all we have to do is be thankful that we have two boys who love us unconditionally.  Autism is a journey that we did not ask for but we are thankful to have the experience of raising a boy who is teaching us to look at life from a unique perspective. 

Rye is a blessing.  He is a gift.  We will cherish every moment of his life; the happy times, the hard times, and the meltdowns. 

December 2008, I will never forget the day I opened the Borisenko holiday card.  I opened the card and my heart stopped.  The memory is still so vivid.  I was standing in the kitchen of our Missouri home in disbelief at a card that now had three boys and a beautiful baby girl.  I quickly called Scott at work.  “Scott you won’t believe it, I’m so happy.”  I explained what I was looking at and we were both shocked, full of joy and overwhelmed with the news.  John and Shawn had given birth to a beautiful baby girl.  Lillian (Lilly) Riley Borisenko. 

We are amazed at the strength of the Borisenko family.  We are so lucky.  We are so thankful.  We are so blessed to have two boys who are happy and healthy.  

Right now there is legislation that can help.  Please take a moment to contact your legislator to voice your opinion on the issue.  Sudden Unexpected Death needs more attention.  Please sign the petition and make the necessary contacts that will give SUD the support it needs.

To the Borisenko Family.  We love you.  We support you and there will never be a February 20th that we don't remember Riley.