aspergers · autism · HFA · insurance · mental health · PRTF · RTC

When Money Wins

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This is my beautiful baby boy. He was about 2 months old in this picture. See his beautiful smile? The sparkle in his eyes? Aren’t those the most munchable jaws ever? 
He is my first son. He is my heart, my soul, my everything. I have always wanted this son. As long as I can remember, I have always wanted children. I have always wanted to adopt. I have always wanted my son first so that my children would have a big brother. 

This baby made me a Mommy. This baby taught me what being a Mommy is about. This baby is still, at 9 1/2 years old, is still my baby boy. 
This little boy, he melted my heart. He was so beautiful, had that same beautiful smile. This little boy also flew red flags. Those flags that say, “Something isn’t quite right. I can’t quite put my finger on it, but it’s there.” 
Those red flags put us in a different parenting mode. It was partly a mode of survival. It was more a mode of teaching him the skills to maintain composure around other people and in public places. 
This little boy is so intelligent and so determined, he did that. He learned to maintain that composure more than many adults are able to. 
This little boy was very excited waiting for Santa to come. He had collected all of his stuffed animals, especially the Christmas oriented ones, to take a picture with him in front of the Christmas tree. He was, for the most part very happy. He was full of energy and laughter. 
This little boy was exhibiting many of the traits associated with Autism Spectrum Disorders. He was easily over stimulated. He had difficulty with reciprocity in social situations. He no longer made eye contact for the most part. He had many sensory processing quirks. He was becoming aggressive when he was overstimulated, anxious, or in an agitated state. He was very rigid in his thinking, behaviors, expectations, etc.  
This little boy was so excited to be at his first Carolina Mudcats game. He still talks about that night 5+ years later. 
This little boy had learned many coping skills. He had learned to maintain composure around people who did not understand his special needs. He had done so well that those who were not very close to our family thought we would make up stories. They truly had no idea the types of things our beautiful son was dealing with and doing.
This little boy loves his siblings like all big brothers should. He makes things for them, does things for them, wants to help them, wants to show them he loves them. He wants to be the perfect big brother. He never wants his siblings to hurt, and would be especially upset if someone else hurt them. 
This little boy is, himself, hurting. He has a condition, that has yet to be accurately diagnosed, that makes his mind and his body torment him. He has true physical pain due to being overstimulated by his environment. He manages himself through the school day, but when he comes home he is unable to maintain composure any longer. He loses control of himself and does things that I do not believe he would ever do intentionally during a “non agitated” state. When he loses control, he often uses physical aggression towards his same siblings that he loves and protects at other times. He is sure that his siblings are the cause of all of his anxiety and agitation. 
This little boy does not realize that he is like a volcano. As his day starts, the lava starts to get warm under the surface. Each time he has to make a decision, something happens unexpectedly, or he has too much sensory input, the lava begins to bubble more. As the day progresses, that lava comes closer to the surface. Once he gets home and has to deal with the activity and noise level of his siblings, the volcano erupts. His siblings weren’t the cause, but they were the proverbial last straw. 
This little boy is currently in a residential treatment facility. He had learned coping skills to survive at school, but he simply could not maintain composure and safety at home. As heartbreaking as it is, I was not enough to keep my baby boy safe. As gut wrenching as it is, his family was not enough to help him. We tried, God knows, we tried. 
This little boy has an amazing relationship with his therapist and with the staff members at the facility. He has never bonded with anyone outside of our family, except his 2nd grade teacher. He has especially never bonded with a therapist. 
This little boy is in the facility with the help of our private insurance and the generosity of the facility. (You can read those stories here and here and here.) When he was with the insurance for the state of NC, if they’d continued to pay, he could have stayed until he successfully completed the program. Private insurance does not work the same way. They see this more as a stabilization and get him out. 
We are working to get services set up for his homecoming. We can’t get services set up until he has medicaid in our state. We can’t get medicaid in our state until he is here. He also does not qualify for medicaid in the state where his facility is because we are not residents there. He is caught in bureaucratic red tape. It is a matter of “He doesn’t qualify here.” and “Oh, he doesn’t qualify here either.” “Sorry, you can’t qualify for our services because his condition is not severe enough.” “He can’t qualify for our services because he has that diagnosis.” And of course, it all comes back to, “He needs medicaid. Have you applied for medicaid?” Yep, we have, but he doesn’t qualify. Anywhere. 
This little boy is caught in the system. My husband does not make enough money to get him the help that he needs. We are not financially comfortable and are not at a point that we can make any further cuts to help fund his stay at his current placement even if insurance stops paying. 
Insurance has the idea that they could make a lateral move from the facility where he has strong bonds with the care team and has made great progress. They are of the opinion that they could move him to a facility in our state and then he would qualify for medicaid in our state. They are absolutely correct, he would qualify, but at what expense? Would he qualify for medicaid at the cost of detrimental damage to his future? Would he regress to the point of no return? Would he lose the trust and faith in people outside of our family that he has gained being where he is? Knowing my son the way I do, I do believe that the cost of moving him simply so that he could access the medicaid in our state would cause irreparable damage to him and his future.  
This is my beautiful baby boy. He is 9 years old in this picture. He still has an amazing smile and a sparkle in his eyes. The sparkle is not as bright as it once was, but each time we visit I see it coming back. 
This little boy has Autism. He is still hurting, he is still experiencing his mind and body torturing him. However, he is learning the skills that will make him successful and help him to have a happy heart. He is such an amazing little boy. 
He is my heart, my soul, my everything. 
I am praying for a way to keep money from winning. 
I am praying for a way to ensure that my son, my heart and soul, is the one who wins. 
I will not give up, he is my son

8 thoughts on “When Money Wins

  1. You FIGHT, honey. Money does not and should not always win. Call our local community newspaper and ask them to write an article about you. Call TV stations. Make some noise! The press is powerful. You son is precious and so are you!!!

  2. You are an amazing warrior mother!!! Know that my thoughts and prayers are with you while you continue on in this fight of red tape and idiots (meaning insurance companies).

    Your words are beautiful and amazing at the same time. You are doing the best that you can with what you have and you are doing it!!!

  3. You are truly an amazing woman. I love your determination. I love the LOVE that you have for that boy. He really is a beautiful young man. I am sorry you had to join this club. It's the worse club ever. I wish we could get beat out of this club like the bloods and the crips do (then again, i get beat.. but never OUT! lol)
    I am so lucky to have our insurance company. This one we've had for 10 or so years, and they've never rejected anything for Tommy. Not even when we used to see DAN doctors. Then again, I've yet to be in your position. My husband's job is one that allows him to transfer (government worker- FAA) If there's an airport, and an opening, he can transfer. Hence, us moving to Ohio 5 years ago.

    I sat at the Doctors meeting yesterday morning talking about diagnostics and billing and programs etc. I've been hell-bent on getting a secondary diagnostic done for bi-polar disorder. He explained it to me like this-

    If I put anywhere on this paperwork that you're looking for a secondary diagnosis TO HIS AUTISM, they are going to reject his stay here. If Autism appears ANYWHERE on this paper, they are going to toss it back. Because there is no CURE for Autism. "

    Fortunately, a few years back, one of our Neuro's gave Tommy an Intermittent Explosive Disorder diagnosis. I don't like this "diagnosis". I've fought it because when you look it up, its SO VAGUE!!! Further, it states that "most people diagnoses with this were raised around aggressiveness or were exposed to violence on a sever level". Well, that is NOT our situation. I didn't want anything to THINK otherwise. But again our doc stated that with Autism, a lot of our kids show signs of MANY different mental heath disorders. We can diagnose him all day and pick the autism apart. Intermittent Explosive Disorder is SO VAGUE for a reason. And as Doctors, it allows them to give the insurance company something to work with. "we will treat Tommy for what he needs to be treated for. His rages. Where they come from is irrelevant. They're all 'treated' the same way".

    We've never had to use the hospital for any other purpose than visits to doctors, and fixes in the ER. So, it will be interesting to see how the bill reads when it comes.

    I wish I had the power of prayer, but I don't. (yes I'm a Atheist). But I believe in Karma, and good things happen to good people.. I hope with all of my might that you get what David needs. Most of all, I really hope with all of my heart that David gets what he needs to come back home to his family. I only experienced it for one night being away from him. I can only imagine what your heart must feel like. <3 I really really hope. You're a wonderful beautiful mom.. and you all DESERVE to be together.. and safe. We all do.

  4. All I can say is – You are an amazing mother. Money is so difficult to overcome and when it's your child? How do you say we can't give you the very best so 2nd place will have to do? It happens. It happens all the time. But I feel your pain and hope a solution comes to give him AND you what you need.

    You are very brave.

  5. Beautifully written. I am so sorry you are once again fighting money, the system & stupid insurance companies. I like the idea of winklett of seeing if you can get any press, help, etc. Good luck. I'm praying for you all & especially David.

  6. Thank you all so much for your support, prayers, good thoughts, and ideas. I do like the idea of going to the newspaper. I'm giving serious consideration to writing a letter/article to take to them. Maybe they will print it, or otherwise help me. I just want to ensure that D gets all of the help he needs and will be successful long term.

  7. You are an amazing Mommy! I will pray for your situation, that your son receives what he needs, not what the insurance says.

    Thank-you for your comment on my blog, it was so encouraging!

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