I took about a week off from writing in order to process some bad news. We found out that once and for all, our insurance will not cover Jack's therapy. This is after MONTHS (literally since June) of back and forth with them. They'd send a bill saying that it wasn't covered. We'd freak out and call, only to be assured that it was an error on their part and that it WAS covered...so we continued therapy and thus continued racking up the bills. Our therapy providers started to get upset because they weren't receiving payment, and for whatever reason couldn't figure out how to talk to the insurance themselves, so we had to be the go-between for them. Many stressful months of this, and finally we find out that we fit oh-so-nicely in a loophole between the mandates of both IL and WI. We're living and employed here in WI, but insurance and employer is located in IL.
The frustration and monetary stress is one thing, but what really sucks about the whole situation is that Jack is now no longer receiving therapy. He still gets some at school, but that's very little. We've gotten appointments scheduled at the hospital for speech/OT/PT but it still won't come close to the 20-25hrs weekly we were getting. It also means traveling to the hospital several times a week. Donnie can come, but he can't participate like he used to. It's all just very frustrating and heartbreaking. If our providers had been more willing to fight with us, maybe we would have taken it further...but the providers just aren't willing to work with us either.
We're still not 100% sure where the money is going to fall. The insurance has stated that they'd cover their portion as a misquote (it is probably upwards of $20,000) and we'd then be liable for our copays (which is fine). We'll see if they follow through and if that's what actually happens...
Monday, November 14, 2011
Saturday, November 5, 2011
Month of Gratitude
On Facebook I've been doing a November activity where I post something I'm thankful for each day. I cannot tell you how awesome it is to start each day with positivity and gratitude. This morning, for example, the boys got me up at 5:45am, Jack broke the computer monitor (should be fixable, just frustrating) and several other small annoyances occurred within a few minutes of getting up -- all before I'd had my coffee.
I was in a grumblecakes kind of mood, but when I finally got my coffee and got the boys settled and the pets fed and sat down at the computer to check emails...I had to come up with a positive, thankful message for Facebook. Thinking about all the things I have to be grateful for really changes your perspective on the day and makes things look a lot brighter -- even before the sun comes up.
I encourage everyone to take a moment to think about the good things in their lives each day. It's so refreshing.
I was in a grumblecakes kind of mood, but when I finally got my coffee and got the boys settled and the pets fed and sat down at the computer to check emails...I had to come up with a positive, thankful message for Facebook. Thinking about all the things I have to be grateful for really changes your perspective on the day and makes things look a lot brighter -- even before the sun comes up.
I encourage everyone to take a moment to think about the good things in their lives each day. It's so refreshing.
Friday, November 4, 2011
A Day in the Life
I'm going to get a little deep for a minute here. Jack has been having a rough week and it's really had an effect on me. He'd been making such amazing progress. I'd been able to foster a lot of hope. People constantly told me they'd never have guessed that Jackson had autism because he behaved so well out in public. At home in his comfort zone his behaviors still came out, but they were mild. Things really seemed to be getting better.
Allow me to explain something...when your child is diagnosed with autism, it's not the same as being diagnosed with a disease or illness. There is no cure. It will not go away. Autism is for life. You can use therapy to manage the symptoms and work towards a 'normal' life, but your child will always have autism. So when you hear that word from a doctor's mouth, even if you knew it was coming (as I did)...you have to mourn, in a sense. You have to let go of the hopes and dreams you may have had for your child -- there are just some things a child with autism may not do or may have to do in a different way. It's not a death sentence, and I still have MANY hopes and dreams for Jackson, but I'd be lying if I said I didn't have different ones before he was diagnosed. Now I dream of him potty training. Having a sleepover. Being a part of a team. Having a job. Getting his driver's license. Things I would have just taken for granted without autism -- things I just know will happen for Donovan.
As Jack improved over the last many months, I was able to have some of those dreams again. And then this week, he regressed in many ways and it was like being physically hit. This week he has spent the majority of his time either playing PBSkids games on the computer, sitting next to his service dog Starr, or running aimlessly back and forth, back and forth from patio door to front door...while running he flaps his hands in the characteristic autistic trait, grunts, and quotes directions from his video games: "To choose a color, use the arrow keys and spacebar to select the answer. Oops! Try again! Use the mouse to move right or left." On and on. He has been refusing to acknowledge or engage with family or therapists -- essentially it's just like...he's gone. He's not here right now. I took him to have his pictures taken yesterday with his grandma, and while it appeared that he was behaving well, he wasn't "present". To get him to sit down for a pose, I had to repeat his name 5-6 times, get into his face (he wouldn't make eye contact) and physically stop him from his bouncing (stimming) to get him to even hear me. It was incredibly frustrating, because while he wasn't being naughty and it probably didn't even look like he was acting that 'different' from an outside perspective...I knew that it wasn't 'him'.
I cannot tell you how difficult it is to see your child like that and have no idea how to reach him, to bring him back. I don't know what caused this shift in his behavior. It could be due to my new job. For his whole life, I have always been here. Charlie would come and go on alternating weeks -- and that was hard to get used to for Jack too -- but I was always here. Now for a week at a time, I'm gone from morning till evening. Daddy is there, but I'm sure it's a big change for Jack. So of course a lot of guilt comes with it.
You can never forget that your child has autism. You must ALWAYS be a few hours and steps ahead. You must constantly plan what you are going to do around how your child might react, what schedule or routine it might displace, what therapy you have to be home for, what possible comfort measures you can provide to ease transitions, etc. But I found myself lulled into a sense of "normal" where that was just how things were -- that's how life is lived for us. Suddenly it got a lot more difficult, and I sort of remembered..."Oh yeah, we have autism." It's not just Jack, it's the whole family.
Allow me to explain something...when your child is diagnosed with autism, it's not the same as being diagnosed with a disease or illness. There is no cure. It will not go away. Autism is for life. You can use therapy to manage the symptoms and work towards a 'normal' life, but your child will always have autism. So when you hear that word from a doctor's mouth, even if you knew it was coming (as I did)...you have to mourn, in a sense. You have to let go of the hopes and dreams you may have had for your child -- there are just some things a child with autism may not do or may have to do in a different way. It's not a death sentence, and I still have MANY hopes and dreams for Jackson, but I'd be lying if I said I didn't have different ones before he was diagnosed. Now I dream of him potty training. Having a sleepover. Being a part of a team. Having a job. Getting his driver's license. Things I would have just taken for granted without autism -- things I just know will happen for Donovan.
As Jack improved over the last many months, I was able to have some of those dreams again. And then this week, he regressed in many ways and it was like being physically hit. This week he has spent the majority of his time either playing PBSkids games on the computer, sitting next to his service dog Starr, or running aimlessly back and forth, back and forth from patio door to front door...while running he flaps his hands in the characteristic autistic trait, grunts, and quotes directions from his video games: "To choose a color, use the arrow keys and spacebar to select the answer. Oops! Try again! Use the mouse to move right or left." On and on. He has been refusing to acknowledge or engage with family or therapists -- essentially it's just like...he's gone. He's not here right now. I took him to have his pictures taken yesterday with his grandma, and while it appeared that he was behaving well, he wasn't "present". To get him to sit down for a pose, I had to repeat his name 5-6 times, get into his face (he wouldn't make eye contact) and physically stop him from his bouncing (stimming) to get him to even hear me. It was incredibly frustrating, because while he wasn't being naughty and it probably didn't even look like he was acting that 'different' from an outside perspective...I knew that it wasn't 'him'.
I cannot tell you how difficult it is to see your child like that and have no idea how to reach him, to bring him back. I don't know what caused this shift in his behavior. It could be due to my new job. For his whole life, I have always been here. Charlie would come and go on alternating weeks -- and that was hard to get used to for Jack too -- but I was always here. Now for a week at a time, I'm gone from morning till evening. Daddy is there, but I'm sure it's a big change for Jack. So of course a lot of guilt comes with it.
You can never forget that your child has autism. You must ALWAYS be a few hours and steps ahead. You must constantly plan what you are going to do around how your child might react, what schedule or routine it might displace, what therapy you have to be home for, what possible comfort measures you can provide to ease transitions, etc. But I found myself lulled into a sense of "normal" where that was just how things were -- that's how life is lived for us. Suddenly it got a lot more difficult, and I sort of remembered..."Oh yeah, we have autism." It's not just Jack, it's the whole family.
Thursday, November 3, 2011
Manifestation and Positivity
I'd mentioned in previous posts that there were big changes on the horizon. Funny sometimes how the universe works...we were focusing all our energy on finding a new job for Charlie, pursuing many different angles. I would go to bed each night just thinking over and over how a new job would change our family. How we just needed a new job to get us over this hump. The universe delivered, but of course in a different way than we expected.
The universe delivered a new job -- but for ME. I'm now working full time on alternating weeks from Charlie for Nicki's Diapers/Planet Wise. I'm currently doing some web content work, with some online retail stuff thrown in. It sounds like my job will evolve and change over the next few months as projects go through to completion, but I'm incredibly excited about this opportunity. I absolutely love the company, and the fact that they are so flexible and willing to work around my family schedule. I'm even able to work from home on the weeks that Charlie works, so that our kids never have to go to daycare. The company is very much growing and on a great upswing, and I'm so excited to get involved more heavily on the 'ground floor' so to speak.
I'm LOVING the feeling of accomplishment and self-worth that getting back out into the work force is bringing me. I had always been working, but it was so part-time and sporadic that it just didn't give me the fulfillment I was seeking. I feel important again. Like I'm contributing to our family. That means so much.
The only downside is that I'm busy -- all the time. The bikes have been hung up for the winter (we still haven't gotten a trainer) and my mandolin has been quite lonely. I often feel like I'm burning the candle at both ends, but it's almost invigorating as well as exhausting.
The kids are doing well. Jack has good days and bad days. His therapists (bless them) are amazing and really stick with it even when he isn't responding or engaging. Donnie is really developing into a precocious, smart little guy. He's absolutely adorable. However I'm constantly paranoid, scrutinizing everything he does. He's stacking blocks, I'm worried that it's a symptom of autism. He's telling me his toys have to go in THIS bin, and I'm worried that it's a symptom of autism. I have to constantly remind myself that he's two. Many of these things are normal two year old behaviors...but I'm still on edge. I think it'll take a few years until I'm sure that he's OK.
The universe delivered a new job -- but for ME. I'm now working full time on alternating weeks from Charlie for Nicki's Diapers/Planet Wise. I'm currently doing some web content work, with some online retail stuff thrown in. It sounds like my job will evolve and change over the next few months as projects go through to completion, but I'm incredibly excited about this opportunity. I absolutely love the company, and the fact that they are so flexible and willing to work around my family schedule. I'm even able to work from home on the weeks that Charlie works, so that our kids never have to go to daycare. The company is very much growing and on a great upswing, and I'm so excited to get involved more heavily on the 'ground floor' so to speak.
I'm LOVING the feeling of accomplishment and self-worth that getting back out into the work force is bringing me. I had always been working, but it was so part-time and sporadic that it just didn't give me the fulfillment I was seeking. I feel important again. Like I'm contributing to our family. That means so much.
The only downside is that I'm busy -- all the time. The bikes have been hung up for the winter (we still haven't gotten a trainer) and my mandolin has been quite lonely. I often feel like I'm burning the candle at both ends, but it's almost invigorating as well as exhausting.
The kids are doing well. Jack has good days and bad days. His therapists (bless them) are amazing and really stick with it even when he isn't responding or engaging. Donnie is really developing into a precocious, smart little guy. He's absolutely adorable. However I'm constantly paranoid, scrutinizing everything he does. He's stacking blocks, I'm worried that it's a symptom of autism. He's telling me his toys have to go in THIS bin, and I'm worried that it's a symptom of autism. I have to constantly remind myself that he's two. Many of these things are normal two year old behaviors...but I'm still on edge. I think it'll take a few years until I'm sure that he's OK.
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