I’m so stressed out right now. I’ve been on the phone all morning. Thank God for unlimited everything on Sprint.
I’m going to share everything that is happening right now. Please don’t take this as a plea for help. This is meant to help educate you as to what going through something of this caliber is like. Maybe you know a family going through something similar but had no idea what goes on behind the scenes or what they may be experiencing.
Allow me to open a brief window into our lives and show you what they might be going through.
As I have said, I’ve been in the phone all morning.
I spoke with Akron Children’s Hospital, where Gavin is currently being housed in their psychiatric unit. Last night he had his stress EEG and he struggled with that a bit so they don’t have any definitive results back just yet.
I was then transfered to the case manager. She was very nice and explained what was going to happen at this point. She said that Gavin would likely be released on Tuesday or Wednesday of this week.
When I asked about transitioning to residential care, she seemed a bit surprised. She’s going to look into it for me and call me back in the morning but that we needed local resources to setup a funding source. Basically, there are specific organizations that get involved to facilitate funding. We have done all this in the past already but never had to actually pull the trigger on hospitalization.
I called them to find out what we would need to do. However, they are in the process of moving and so don’t have active phone lines and I was told there is no way to contact them. The nice lady I spoke with took a message and was going to get it to someone that could call me back…at some point.
That felt like a dead end or at least a delay, it’s understandable.
I also spoke with family services to find out about getting help for our mortgage/rent. We are still behind and can’t seem to get caught up. They gave me the numbers of a few agencies that can help with utilities and mortgages. The catch is they only take calls at a specific time, once a week. It’s literally impossible to get through. As the help is first come first serve, if you don’t get through, you can’t get help. As you can imagine, the volume of incoming calls at that specific time is overwhelming and makes it impossible to get through.
Another dead end. However, I’ll be trying anyways.
I have to also call Chase, who holds our loan for the van. I’m 2 payments behind on that as well. We were never in a position to absorb a car payment but were let with no choice when our van was stolen and we needed to replace it. I’m hoping that Chase has a hardship program that can help us to get caught up.
Speaking of the van. I had to release 2 past due checks to the people that did $2000 worth of work to our old van about 2 weeks before it was stolen. They have been fantastic about working with us but I’m 2 months behind with them as well. At least now I’m current on something and that’s a good feeling.
I was also finally able to get through to Beechbrook psychiatric hospital in Cleveland. This is where we were hoping to have Gavin transferred to after he was released from Akron Children’s Hospital. I spoke with intake and they were really nice. I was asked about the funding source.
I said that Gavin is on Medicaid because he’s on disability. She said that Medicaid will cover the doctors, groups, medications and things like that. However, they won’t pay for his bed. I made the mistake of asking how much the bed would cost. She said $300-$500. I was like, per month. She was like, no…per day.
Per day? Are you serious?
If Gavin were to stay for the full 60 days that would be $30,000. Who could possibly afford that?
Apparently, that’s what the funding is for.
I swallowed my heart, which had climbed up into my throat and explained Gavin’s situation. Even if I had the $30,000, they wouldn’t be able to take Gavin because of business complex medical issues. She said that no free standing facility would take Gavin because he needs advanced medical care that a psychiatric hospital is simply not equipped to handle.
That is another big, fat, demoralizing dead end.
I also made the call to the Cleveland Clinic in order to get him an appointment with a new psychiatrist. They had to check into it and call me back. I heard back a little hit later and found out that the best option was to see one of the nurse practioners, that specializes in complex neurological disorders. That would serve as a pseudo intake and we would decide where to go from there. She has to put him into the system and call me back when I can actually make the appointment.
This is a positive thing but has nothing to do with Gavin’s long term care needs.
I still need to call back to Cleveland and get a follow up with Gavin’s autonomic specialist. He was waiting to hear back from the Mayo clinic as to possible testing for Gavin.
I’ve lost track of how many actual hours I spent on the phone. All I know is that I would be in trouble if we didn’t have Sprint. Their data may suck right now but unlimited is unlimited.
At the moment, I’m on overload. We have no plans or options for extended care and Gavin is slated to come home in a few days. I don’t know what to do. There is simply too much to try and worry about right know. How do I even begin to prioritize things?
It sounds like the boys have woken up from their naps and will probably want to eat. I suppose I should feed them. 🙂
Please remember that when a family goes through something like this, it’s damn near impossible to cope with. Not only do they have to manage the immediate crisis but the rest of their daily lives as well. I hope this gave you so insight into what a situation like this can easily require and honestly, this was only a portion of it.
If you know a family just your life experiencing something like this, please show them all the love and compassion you can. They very likely won’t ask for it but it really helps to know they aren’t alone and that you are there to help.
What I discussed above is only the physical side of things. I don’t have the words to explain the plethora of emotions and guilt that accompany this as well.
**Thanks for reading**
-Lost and Tired
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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.
I really wish I could do more to help right now. As you know, ever since I bought my Epic 4G and used midNIGHT, I've been following you. I never thought I'd stick around for long after, but I've come to know and care about your family; you've opened the doors and let us in. I've become educated about the many challenges and conditions that you guys face. You and Lizze are great parents and it frustrates me that shit keeps happening to you. All I can give right now is my support and prayers. Gods bless and hang in there. You're doing the best you guys can and that's much more than a lot of parents do.
I\’m so grateful that you\’ve stuck around. I\’d love to get back into ROM developing and I still tinker with stuff but don\’t release anything. Your support is all we could ever ask for. Now of course, if your hoarding all the way buttons, could you kindly send one my way. 😉
My son sees a great neuro psychiatrist down at the clinic. I hope you guys get set up with her!
Your life would probably get exponentially easier if you re entered the full time workforce. It would get you health insurance, which would help offset the costs of your son’s medical care.
It would also allow you to catch up on the bills you are having trouble paying, and treat the boys to something special.
I know work is a drag, but I can see what you’re going through is a drag too. Seems like your dammed if you do, dammed if you don’t. I would lean toward the option that would help with the bills…
Thanks Jim. I don\’t stay home for fun. It\’s a necessity. My wife is chronically ill and with 3 special needs kids, I have to stay home. Also, \”real insurance\” doesn\’t cover autism.
The reason things are so bad right now is because we haven\’t been able to recover from our van being stolen. We were forced to sink every last dime into replacing our stolen car. We were staying afloat until that happened. Once you get behind its tough to get caught up. So it\’s not that works is a \”drag\”, it\’s just not possible with what I have going on.
I do have my own business and have been in business for over 10 years. I bring in a paycheck from there as well as my writing.
Thanks for the advice though 🙂
I don't know how you're still going man. It's a lot to handle. Too much for any one person to be asked to handle. I wish there was some way I could help you. Is there anything I could do?
The fact that we have connected is more than enough. I love seeing dad\’s like you and I speaking out. You rock man. 🙂
All I can say is God Bless you all. You must be very special parents to be able to deal with all the heartache and red tape that I assume is an every day thing in your family. I have 3 autistic grandsons that also have many different issues and are at different levels. I really don't know how you make it through the day, but somehow you have the courage to move forward. I am on disability and don't have much money, but if I have any thing left at the end of the month I will gladly donate what I can. I realize your main purpose is to try and educate others and to help them understand what living life with autistic children is like. Maybe there is another way that I can be of assistance to you if not financially. My disability keeps me at home most of the time, so what I can offer you is some of that time. If there is anything I can do to help as far as making phone calls or looking up or researching information for you. please let me know. I'm not a computer genius but I can get around on it okay. I try to donate time to my grandchildren when I can, as their parents are also stressed out and overwhelmed and unsure of what to do on any given day or shall I say know how to proceed? We have very few trained professionals and resources in our small community and there doesn't seem to be anyone to turn to for answers. The twins will be 10 and their younger brother is 7. My physical health prevents me from doing many things for them that I wish I could be more helpful with. Like I said, if you can think of anything I can do to help you, and I'm not sure what that might be, please feel free to ask. My heart and prayers go out to you and your family.
Thank you so much for your offer but if you would like to help, please let your family know about this Site and our online support group. Please let me help them if I can. I would love to see you in there as well. 🙂 It free and the loving, compassionate people like you that are in there, the better. 🙂
So my husband just finished a class as part of his CNA continuing education, and he came across at least one short/long term residential facility (nursing home) that also cared for psych issues. they are not dedicated to it, but they have the resources for it, and any other medical issues as well. That might be another option to consider rather than a purely psychiatric facility.
Thanks for the information, hopefully we\’ll get some good news in the morning from the hospital. 🙂
My son is on Medical Assistance as well as my work insurance. I don't know exactly what Medicaid covers – but Medical Assistance paid for my son's bed (which for a 30 day stay was $3,000/day – how can they justify that I have no clue!). If it wasn't for MA, I wouldn't know what to do. Is Medicaid like Medical Assistance? We have a thing in Minnesota where my son has to go through a SMRT – State Medical Review Team to be renewed for his disability every five years or so. Does that sound familiar? Do you have that where you are? I feel so horrible for all of you. I know how it feels. I really do.
I am sorry and stressed for you. It is so hard, and I hope for all of your safety and well being, you find a solution that will work.
My recent post A Little Luxury
Thanks a lot. 🙂
I so wish there was a way we could help!!! I remember when we tried to get Marc into some kind of long term there was nothing. When medical issues and mental issues mix. I praying something goes right for all of you soon!! Love you guys and thinking of you all!!
Thanks Deb. I know you guys understand. You\’re in our thoughts and prayers as well.