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 autism...to 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 months...as 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.

2 comments:

  1. I will say it again. You and Nathan are awesome parents. I can't imagine what you have been going through. Praying for you all.

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  2. Tammy You and Nate are so awesome parents. If Beau could speak he would tell us all the same thing. That young man is so blessed having great parents as you guys have been to him. Praying for you all.

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