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.