Autism, Fibromyalgia and IMPOSSIBLE decisions..

`~Special needs parenting of children with Autism is a very challenging task. However, when one parent has major health issues those challenges exponentially increase. Sometimes these situations require choices to be made that are far from easy~

 

I’ve been pretty overwhelmed all week. Well, let’s be honest, I’m overwhelmed pretty much ALL the time. Parenting 3 boys with Autism will have that affect. I have so many thoughts in my head that I want to get out but I can’t seem to organize them enough to string two of them together coherently.  Friday was a really challenging day. The Lost and Tired family made some progress but also suffered some pretty major setbacks. Today isn’t any better as Lizze can’t physically get out of bed today.

Friday was full of “to-do”s” for me to try to accomplish. I managed to get Emmett’s speech therapies back on track. Beginning next week Emmett will receive speech therapy twice a week. As you may remember Emmett was being seen once a week but that wasn’t meeting his needs as he is “mod-severely” speech and language impaired. He needs at least twice a week (which ONLY equates to 1 hour/wk) in order to continue making progress. Originally the increase had been denied but there had been some miscommunication. After speaking with insurance and Concorde Kids I got things straightened out….at least for now. Progress.

I also spent the better part of the afternoon on the phone with the Cleveland Clinic. I was trying to get Lizze into the Neurology and Rheumatology departments. Lizze is in desperate need of help and the Cleveland Clinic is basically the BEST hospital in the US. I had everything set up and she was registered but when I went make the appointment I was informed that they don’t take her insurance. I asked about self-pay or hardship programs and I was told that Lizze would have to drop her insurance coverage in order to qualify. If she did that then she would lose her other doctors. The other option is to change carriers but then the kids would lose their doctors. How do you make that choice. Good doctors that accommodate kids with Autism are not easy to find but at the same time someone that can help Lizze has been IMPOSSIBLE to find. How do you choose? Who takes priority?

I had to sell my phone on eBay this week. I needed to money to try to get the van fixed…again. This means I had to shut down my Android development/Autism Awareness projects as I no longer have a platform to develop on (ie Samsung Epic). While I was VERY happy to be able to do this, developing was my only outlet aside from this blog. Hopefully I’ll be able to get another phone in the near future so I can get back to it.

"The Tube"

I also spent some time on Friday looking into getting the van fixed. There is NO POSSIBLE way for me to do this myself as I believe the front axle has to be dropped in order to gain access to the water pump. There is a part called “the tube” (and yes that’s the official name….seriously) that runs off the top of the water pump and it ruptured. “The tube” is a separate serviceable item from the water pump. I called around and the repair runs about $300. The problem is that sometimes “the tube” can’t be removed from the water pump and so the water pump will need to be replaced as well. This is a VERY big game changer as the price of the repair more then doubles. So basically the
repair will cost $300-$800. The really crappy part is that they won’t know if the water pump needs replaced until they get started. The problem is that once they get started there is NO going back. I spoke with Waterloo Transmission made an appointment for Monday morning. I bought the part at the dealership (dealer only part) so there won’t be a delay. I’ll drop the van with the part off on Monday. Not only are they cheaper but they are Autism Aware and have worked with us in the past. They have agreed to look at it and if it appears to be a problem then they will abort the repair as I just can’t afford to replace both. So I’m crossing my fingers that everything goes smoothly so we can get the van back up and running.

~When you have to choose between your children with Autism and your spouse with health problems~

As I said earlier, today is a really bad day, especially for Lizze. She physically can’t get out of bed. I tried to help her but the pain is just to much. I don’t know how to help her. I want to just lay there with her but the kids need me as well and I can’t leave them alone. Being a special needs parent is hard enough but when your spouse is disabled words can’t describe how challenging it becomes. I just realized that I used the word “disabled” to describe Lizze. While her and I have used that word in private I haven’t said anything like that here. The truth is that Lizze is disabled. Her health has declined to such a point that she can no longer even walk without assistance. While it shouldn’t be about me, I can’t help but feel torn. I have to be there for the kids AT ALL TIMES but Lizze is my best friend, my wife and the mother of my kids. How can I not be there for her. I feel like I have to choose who gets my help and that SUCKS… Life shouldn’t require these types of choices.

If your family is happy and healthy PLEASE don’t EVER take that for granted. If you take one thing away from this post I hope it’s that.

Autism can touch ANY family in MANY ways. Never forget that. Every day is Autism Awareness day.

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Michele

My son is autistic and I am in the process of being diagnosed for Fibro. I take a number of supplements to help me and my son. I would be willing to send you a list if you would like. Just message me through my FB page I will send to anyone who is interested. MicheleChaney Bonners Ferry, Idaho Just let me know what you are asking for when you do.

Phyllis

You are right. You are in an impossibly hard situation. Has your wife heard of Neurotin? I take that and a muscle relaxant at night and it has helped me a lot. I no longer have days where I cannot get out of bed. I still am in a lot of pain, but it is bareable.

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