Man, I look at my site meter and see that people are still stopping by here to check in despite nearly a month of silence. Thanks for a.) caring, b.) wondering what this wack job is up to now, and/or c.) being loyal readers of this chaos.
As my friend, J, said to me yesterday, 'I know you've had plenty to blog about this past month!' Yes, indeed, I could certainly fill more pages with blah, blah, blah...general suckitude...blah, blah, blah; but as I've said before, I hate that there are long stretches where this blog becomes nothing more than a bitch fest.
I will say this: not having in-home ABA therapy for the last seven weeks has been awful. Really and truly awful. M is unhappy. I am unhappy. Everyone is unhappy. There are sleep issues with both boys that are compounding the unhappiness. Negative behaviors have returned to M's world, (and then some), and my mental state just doesn't seem to be fully in check to deal with it. I'm working on that part, but I sometimes feel like I'm walking around like a bleary-eyed drunk, which is ironic since I've actually been drinking a lot less the past couple of months.
When I was a child--starting around age six and lasting probably until I was 13--I had a recurring dream whenever I had a high fever. In the dream, I was in a white room with no dimensions to it. I was standing there alone and all of a sudden tires began being thrown at me. At first the tires were quite small and thrown gently to me, (I had to catch each one), but they would gradually get larger and thrown at a faster pace. Inevitably, when I got to the point where there was no way I was going to catch the tire, the dream would switch to a playground. I was on one of those animals atop a large spring coil. A boy was sitting on one next to me staring. Never blinking. He was going back and forth very fast and then got slower...and slower...and slower...and then I would wake up. I know, I know. Totally messed up, right? Probably should have seen a therapist about that one way back when. But the reason I bring this past dream up is because I'm feeling like I'm in that room with all those tires right now and I'm about to drop them...and then what? What really happens when I can no longer catch all those damned tires?
I know that there are a lot of people in this world that have lives far more stressful than mine. I know how fortunate I am in so many ways. But when tires are being thrown at you from all directions, sometimes it's really hard to appreciate the goodness. I suppose that's a New Year's resolution in the works. Wouldn't it be nice if there were no need for resolutions?
Thursday, December 2, 2010
Monday, November 8, 2010
Wanna Hear A Funny Story?
Our insurance company (ha! I made a typo at first and wrote 'sinsurance') wanted us to have a conference call with them this morning. They gathered some big wigs in the room like their clinical social worker in charge of the 'care' management team, a senior care manager, and a doctor from the Bay Area who is a board certified child psychiatrist and director of behavioral health. The purpose of the call was for them to give us suggestions that we may not have already come up with to better our child's health. (HAHAHAHAHAHAHAHA)
So we discuss the speech and occupational therapy we're doing privately and at school. Child psych agrees this is a good thing. (gee, thanks) Child psych then says that he noticed that in the last seven years we have not yet seen a child psychiatrist. I had been concerned that this man would 'advise' us to seek medication for M, so I asked him straight out if that was his point. He responded by saying that he didn't necessarily agree medication was always the right thing and couldn't comment specifically on that since he hadn't met our son. Good man for saying that because I'd a pulled out a can of whoop ass if he had! But he said that a psychiatrist would advise us on other behavioral interventions.
Wha?? Stop right there, doc. So I said to him (in my best lawyer-esque, leading question, sort of way) 'exactly what other behavioral interventions could you mean??' I'll give you one guess what he said.......
Wait for it....
Applied Behavioral Analysis! The very reason we were having the freaking call! Because the stupid-ass insurance company believes it to simply be educational and not worth of covering. Anyone else find this ever-so-ironic?
They took it one fabulous step beyond that and let us know that they'd been awesome enough to do some research for me and found a provider who would charge us a lot less than our current provider had. Of course, this would come from our own pockets, but aren't they so great to have done all that legwork and made all those phone calls for little-old-us? Wow, I am so honored.
I made a point to remind them that the only reason we'd gone with the provider we had was because at the time they were the only ones in-network, which was their requirement. I also made a point of reminding them that the reason our therapist was more expensive than most therapists was because they required her to be of a higher accreditation. Funny, no one said a word after that.
We let them know that we'd be starting the tedious appeal process immediately knowing full well they're going to deny us at first.
What a joke. What a freaking waste of our time. $#@(**!!
So we discuss the speech and occupational therapy we're doing privately and at school. Child psych agrees this is a good thing. (gee, thanks) Child psych then says that he noticed that in the last seven years we have not yet seen a child psychiatrist. I had been concerned that this man would 'advise' us to seek medication for M, so I asked him straight out if that was his point. He responded by saying that he didn't necessarily agree medication was always the right thing and couldn't comment specifically on that since he hadn't met our son. Good man for saying that because I'd a pulled out a can of whoop ass if he had! But he said that a psychiatrist would advise us on other behavioral interventions.
Wha?? Stop right there, doc. So I said to him (in my best lawyer-esque, leading question, sort of way) 'exactly what other behavioral interventions could you mean??' I'll give you one guess what he said.......
Wait for it....
Applied Behavioral Analysis! The very reason we were having the freaking call! Because the stupid-ass insurance company believes it to simply be educational and not worth of covering. Anyone else find this ever-so-ironic?
They took it one fabulous step beyond that and let us know that they'd been awesome enough to do some research for me and found a provider who would charge us a lot less than our current provider had. Of course, this would come from our own pockets, but aren't they so great to have done all that legwork and made all those phone calls for little-old-us? Wow, I am so honored.
I made a point to remind them that the only reason we'd gone with the provider we had was because at the time they were the only ones in-network, which was their requirement. I also made a point of reminding them that the reason our therapist was more expensive than most therapists was because they required her to be of a higher accreditation. Funny, no one said a word after that.
We let them know that we'd be starting the tedious appeal process immediately knowing full well they're going to deny us at first.
What a joke. What a freaking waste of our time. $#@(**!!
Sunday, November 7, 2010
The Fight
Sorry for the delay in updating everyone on our crazy ABA/insurance situation. The following was just posted over at Hopeful Parents:
As a parent of a child with autism, sometimes I really feel the weight on our generation to lay the groundwork for future families of autistics. I accept that responsibility and do what I am capable of doing to mend the gaping hole that lies between our children's needs and rights and what our society actually offers them.
But no matter how responsible I feel, I can't help but have those moments (many, in fact) where I allow myself a tiny pity party (often with wine/whine) because I just get tired of fighting. For every.little.thing.
I find myself sometimes resenting those around me who have it so easy, and have to remind myself frequently that a.) everyone carries their own burdens whether I know it or not, and b.) maybe there is a teensy bit of truth in the idea that somebody in the universe thought I might be a little better suited to carry this load than someone else. (insert maniacal laugh here)
For the past six months my family has had a huge weight lifted from our shoulders. A calm like we hadn't known in several years. We were finally able to have ABA (applied behavioral analysis) covered by our insurance company. For those of you out there that have self-insured insurance plans, you know that this is next to impossible to achieve. It took me over two years to do it, and I was ecstatic when I learned that we would be authorized for 25 hours/week at a co-pay of only $15/day.
That calm came to a screeching halt two weeks ago as I was informed by a 'care manager' from our insurance company that the past six months had all been a big oopsie and were authorized and paid for in error. Despite having a piece of paper in my possession that was the most recent 60-day authorization good through the end of November, I was told that no claims would be paid past the day of the phone call. Apparently in the insurance world, documents I would consider binding don't have to be if the insurance company decides the rules need to be changed. This is all most certainly unethical, and I can't help but wonder if it is illegal as well.
What we are left with now is a boy who doesn't understand why his beloved therapist no longer visits him each afternoon after school. A boy whose hyperactivity and agitation have most definitely increased again, along with my own stress and guilt at not being as skilled or patient at keeping him engaged myself. My husband and I are faced with the daunting appeal process that lies ahead; one that will likely take up the next four months (at least) and require $150/hour for the services of the autism advocate we are hiring, not to mention the uncomfortable situation my husband is going to be put in since this will inevitably end up as an investigation on his company by the department of labor.
His company has taken good care of us financially thus far. They have given him a solid job with room for significant growth in a time when many families worry about that sort of thing. And yet, they aren't able to give us what we really need the most: help for our child.
Autism benefits for a company the size of the one my husband works for would cost millions of dollars. I realize the impact this has on a company's bottom line. But I also know just how many millions of dollars my husband brings in for his company...a number that far outweighs what an autism benefit would cost.
There are many large corporations who have collaborated with autism support groups to create such autism packages. These companies have realized that by doing so, they've created a better environment for their employees as well. Productivity levels will increase, not only because the employees loyalty will increase, but because they aren't having to spend countless hours during the workday fighting unpaid insurance claims and researching treatment options that might get paid. These companies have taken a huge step forward that I hope more companies will follow. But they won't do it unless we parents take a stand and let them know just how important it is. And so, as frustrating as it is, we all must do our part in helping this country realize the importance of making treatments for autism like ABA accessible to ALL families. We're going to have an even bigger problem on our hands when these kids reach adulthood if we don't help them as much as we can as children.
Tuesday, October 19, 2010
Fuck You, Universe
I feel like I have just had the wind knocked out of me. As though someone has told me of a death in my family. That is the heaviness I feel in every molecule of my body at this moment.
I just received a phone call from our insurance company from a representative that told me that the ABA services we have been receiving in-home since May...the ones I worked my ass off to get for two years...were 'authorized in error and will not be covered past today.'
I am beside myself. I am sobbing and screaming out loud and have no idea what to do next. The other half is in a business meeting and will call me afterward, but I don't know how we're going to counter this decision with his company.
M is a different kid since our therapist began working with him. He is happier and calmer from the engagement she provides him each afternoon. MY life has been happier and calmer since she started coming here. Holy shit, you guys, I am FREAKING OUT over here.
Please, please let this be a bad dream.
I know it sounds dramatic, but this is so important to our entire family.
I am absolutely crushed right now.
I just received a phone call from our insurance company from a representative that told me that the ABA services we have been receiving in-home since May...the ones I worked my ass off to get for two years...were 'authorized in error and will not be covered past today.'
I am beside myself. I am sobbing and screaming out loud and have no idea what to do next. The other half is in a business meeting and will call me afterward, but I don't know how we're going to counter this decision with his company.
M is a different kid since our therapist began working with him. He is happier and calmer from the engagement she provides him each afternoon. MY life has been happier and calmer since she started coming here. Holy shit, you guys, I am FREAKING OUT over here.
Please, please let this be a bad dream.
I know it sounds dramatic, but this is so important to our entire family.
I am absolutely crushed right now.
Sunday, October 17, 2010
Community...I Want One
For those of you readers living around me in my beautiful, coastal town...fear not! I totally realize that I have a community here--and a damn good one at that. It's pumpkin festival time here again and even though the traffic sucks, the vibe is delicious and fills me with the warmest of fuzzies. I love this little town. I love how excited my children (well, I'm making assumptions for M here) get when they pass by all of the pumpkin patches. I love the pumpkin weigh-off and the small town parade. I love my friends. I have such wonderful friends in my life here; friends who always have my back when I need them, who are always up for a wine playdate with the kiddos, and who listen to me when I just need to talk. Of the latter, I sometimes wonder why or how they can possibly want to keep calling me or inviting me to things. Sometimes I annoy myself with my autism talk. So, thank you, beautiful friends, for continuing to like me. No matter where the wind takes my family down the road, I sincerely hope you are still a part of my journey!
But back to the part about wanting a community...we move around a lot. It's totally by choice, too, since the other half and I are apparently each tainted with a wee bit of gypsy blood. A good friend often jokes that we must be a part of the witness protection program. I've mentioned it before, but at 30 months now, this is the longest we have lived in one house since either of us started college back in, um, 1992. That's a lot of packing and unpacking boxes...and a lot of never really getting settled in your space. I'm tired of not knowing where I am supposed to be. It's not that I don't still have the desire to experience new places--I absolutely do--but I am getting to a point in life where I realize that I am holding back a bit of myself because I don't know how long I will live here. Sure, I totally realize that I should just go ahead and volunteer for the festival since I am a member of this community at present, but it's almost like that's a tiny bit more of myself I am afraid to invest because all of the people around me seem so sure of where their place in this world is. I'm sure that sounds absolutely ridiculous. It sounds ridiculous to me just typing it. I guess I am having trouble finding the right words to truly describe how I'm feeling.
Another problem is the other half. I have made a promise to him that I wouldn't ever bad mouth him on this blog--and I haven't--but I will say that our personality differences in this regard do make finding (and loving) a community a bit more challenging. Volunteering isn't something that is important to him. (Though he has been the most amazing soccer coach for teams he didn't have a child on in the past) Finding lifelong friends other than the ones he's had since high school and college is also not particularly important to him. I need a village, he does not. I suppose that's the yin and yang of so many relationships, but I find that aspect of our marriage to be the most difficult. I find myself going to things with only B. M's disability makes outings like yesterday's parade a bit more challenging. And the fact that we hung out in an open backyard of a friend's home for six hours...well, that would never have worked if M was there, unfortunately. Our family is often divided as I am aware so many autism family's are. But I think that the other half's lack of desire to be a part of this community makes it all that much easier to leave him at home with M while B and I explore and create lasting friendships.
The question of where to live for the long haul haunts me daily. What if there isn't a place that truly suits our entire family's needs? I have a sense that if we moved back to our hometown where my wonderfully helpful in-laws live that the other half might perk up a bit and want to have friends over for cookouts and family get togethers. But that would be because it's his friend and family base...his comfort zone we'd be returning to. As much as I love these people dearly and know that I would forge a wonderful life there, I fear losing a tiny bit more of my own wants. I love the California lifestyle. I love how easy going people are here about the way others look. (I noticed this even more on a recent trip back to Austin where they used to be relaxed in the way the women look, but more and more seem to be losing that sense) I love the weather here. I love the ocean and the mountains and the trees. I love that I live in a small town where I see at least one person I know (and like) every time I go to the store. And on the other side of the coin, I love watching my children play with their cousins back on the mother ship. I love that my sister-in-law. K, loves M (and, of course, B) with all the love she has for her own children, and that she would be an amazing support for us were we to move back. I love that it costs a hell of a lot less to live on the mother ship than it does here. And I especially love knowing that if the time comes for M to live in some sort of an assisted facility (gulp) that there would be family back there who could visit him.
Sometimes I am right on board with the other half to say 'screw it' to all of those worries and just pick up the family and move abroad. For example, Switzerland has AMAZING services for children with disabilities as well as the cleanest overall environmental qualities. And sometimes I think we just need to find a different town here in California that fits the bill a bit better in terms of schooling and commute time for the other half. But will we be in this same position in 30 months after settling down there? So many questions that I suppose no one can really answer for me.
I need to do a better job at living in the present, but my head sometimes just won't allow it.
But back to the part about wanting a community...we move around a lot. It's totally by choice, too, since the other half and I are apparently each tainted with a wee bit of gypsy blood. A good friend often jokes that we must be a part of the witness protection program. I've mentioned it before, but at 30 months now, this is the longest we have lived in one house since either of us started college back in, um, 1992. That's a lot of packing and unpacking boxes...and a lot of never really getting settled in your space. I'm tired of not knowing where I am supposed to be. It's not that I don't still have the desire to experience new places--I absolutely do--but I am getting to a point in life where I realize that I am holding back a bit of myself because I don't know how long I will live here. Sure, I totally realize that I should just go ahead and volunteer for the festival since I am a member of this community at present, but it's almost like that's a tiny bit more of myself I am afraid to invest because all of the people around me seem so sure of where their place in this world is. I'm sure that sounds absolutely ridiculous. It sounds ridiculous to me just typing it. I guess I am having trouble finding the right words to truly describe how I'm feeling.
Another problem is the other half. I have made a promise to him that I wouldn't ever bad mouth him on this blog--and I haven't--but I will say that our personality differences in this regard do make finding (and loving) a community a bit more challenging. Volunteering isn't something that is important to him. (Though he has been the most amazing soccer coach for teams he didn't have a child on in the past) Finding lifelong friends other than the ones he's had since high school and college is also not particularly important to him. I need a village, he does not. I suppose that's the yin and yang of so many relationships, but I find that aspect of our marriage to be the most difficult. I find myself going to things with only B. M's disability makes outings like yesterday's parade a bit more challenging. And the fact that we hung out in an open backyard of a friend's home for six hours...well, that would never have worked if M was there, unfortunately. Our family is often divided as I am aware so many autism family's are. But I think that the other half's lack of desire to be a part of this community makes it all that much easier to leave him at home with M while B and I explore and create lasting friendships.
The question of where to live for the long haul haunts me daily. What if there isn't a place that truly suits our entire family's needs? I have a sense that if we moved back to our hometown where my wonderfully helpful in-laws live that the other half might perk up a bit and want to have friends over for cookouts and family get togethers. But that would be because it's his friend and family base...his comfort zone we'd be returning to. As much as I love these people dearly and know that I would forge a wonderful life there, I fear losing a tiny bit more of my own wants. I love the California lifestyle. I love how easy going people are here about the way others look. (I noticed this even more on a recent trip back to Austin where they used to be relaxed in the way the women look, but more and more seem to be losing that sense) I love the weather here. I love the ocean and the mountains and the trees. I love that I live in a small town where I see at least one person I know (and like) every time I go to the store. And on the other side of the coin, I love watching my children play with their cousins back on the mother ship. I love that my sister-in-law. K, loves M (and, of course, B) with all the love she has for her own children, and that she would be an amazing support for us were we to move back. I love that it costs a hell of a lot less to live on the mother ship than it does here. And I especially love knowing that if the time comes for M to live in some sort of an assisted facility (gulp) that there would be family back there who could visit him.
Sometimes I am right on board with the other half to say 'screw it' to all of those worries and just pick up the family and move abroad. For example, Switzerland has AMAZING services for children with disabilities as well as the cleanest overall environmental qualities. And sometimes I think we just need to find a different town here in California that fits the bill a bit better in terms of schooling and commute time for the other half. But will we be in this same position in 30 months after settling down there? So many questions that I suppose no one can really answer for me.
I need to do a better job at living in the present, but my head sometimes just won't allow it.
Wednesday, October 13, 2010
Hiatus
A little break will do a Mama good, but damn is it hard to jump back into reality!
I was fortunate enough to finally have an entire week without hands on parenting duties. I visited my parents back on the mother ship (after having not seen them for nearly a year-crazy) and then the other half flew in and we joined some of his friends and their wives for the Austin City Limits music festival. I am fairly certain I have officially gotten too old to spend three days drinking ridiculous amounts of alcohol in the hot outdoors of a Texas park filled with 90,000 people each day. Ouch. My liver hurts! I was so, so ready to get back and see my sweet boys. I missed them so much, and I realized that feeling such an emptiness in my heart without them was exactly what I needed to feel to refresh me and get me ready to live the day to day craziness until the next break! (which will likely not be for a very, very long time)
Along with the reality of day to day parenting comes the reality of crappy things happening around us all every single day. Okay, so the rescue of the Chilean miners is a huge bright spot of goodness, but let's face it, it's tough out there.
I got some news from a close friend yesterday that has sent me into a bit of a tailspin. One of B's best little buddies has just been diagnosed with leukemia. I can barely type that out without getting a huge lump in my throat. This little guy isn't even four years old and he has fucking cancer. Seriously...WHY?
Clearly I am not experiencing the same depth of emotion as my friend is feeling for her son, but I have not thought of much else over the last 26 hours. I feel a heaviness in my bones and have been walking around in a daze. This is just too close. Too, too close. And I want to be there for my friend in every capacity she needs me to be without stepping on her toes or making her feel like I am doing too much.
Isn't that fine line in so many of life's situations a bitch?
No matter your beliefs, please keep a really freaking amazing little boy in your thoughts or prayers. Light a candle. Meditate. Do a dance. Just send some healing power to this kiddo. D is truly one of the strongest and toughest three year olds I have ever met. This kid's been riding a two wheeler since he was two years old and jumping off of bike ramps probably as long. He has a gusto like no other and I know it will serve him well in this fight.
I was fortunate enough to finally have an entire week without hands on parenting duties. I visited my parents back on the mother ship (after having not seen them for nearly a year-crazy) and then the other half flew in and we joined some of his friends and their wives for the Austin City Limits music festival. I am fairly certain I have officially gotten too old to spend three days drinking ridiculous amounts of alcohol in the hot outdoors of a Texas park filled with 90,000 people each day. Ouch. My liver hurts! I was so, so ready to get back and see my sweet boys. I missed them so much, and I realized that feeling such an emptiness in my heart without them was exactly what I needed to feel to refresh me and get me ready to live the day to day craziness until the next break! (which will likely not be for a very, very long time)
Along with the reality of day to day parenting comes the reality of crappy things happening around us all every single day. Okay, so the rescue of the Chilean miners is a huge bright spot of goodness, but let's face it, it's tough out there.
I got some news from a close friend yesterday that has sent me into a bit of a tailspin. One of B's best little buddies has just been diagnosed with leukemia. I can barely type that out without getting a huge lump in my throat. This little guy isn't even four years old and he has fucking cancer. Seriously...WHY?
Clearly I am not experiencing the same depth of emotion as my friend is feeling for her son, but I have not thought of much else over the last 26 hours. I feel a heaviness in my bones and have been walking around in a daze. This is just too close. Too, too close. And I want to be there for my friend in every capacity she needs me to be without stepping on her toes or making her feel like I am doing too much.
Isn't that fine line in so many of life's situations a bitch?
No matter your beliefs, please keep a really freaking amazing little boy in your thoughts or prayers. Light a candle. Meditate. Do a dance. Just send some healing power to this kiddo. D is truly one of the strongest and toughest three year olds I have ever met. This kid's been riding a two wheeler since he was two years old and jumping off of bike ramps probably as long. He has a gusto like no other and I know it will serve him well in this fight.
Tuesday, September 21, 2010
From The Mouths Of Babes
About a month ago, B and I were in the waiting room of the pediatric therapy center M goes to for private occupational therapy each week.
There was a boy there, a couple of years older than B, waiting with his mother for his appointment.
It was clear that the boy was on the high functioning end of the spectrum. His social skills were a bit immature and robotic; things that my delightfully non-judgmental B didn't care about at all.
At one point, the boy said to his mother (while looking at me), 'Is that his Mom?'
Before the mother could answer, B did it for her by saying, 'Yes. That's my Mom. She cries a lot!'
WTF?!!
Fortunately, the Mom looked at me and said with what I believed to be complete honesty, 'That's okay. I do too!'
We laughed about the waiting room at a therapy center being a safe zone for such frankness. Perhaps B, even at the age of three, also sensed that because I have never ever heard him say something like that before that moment! (and I better not ever again!)
Naturally I fixated on this statement for a little while. Does he really think I cry a lot? Do I cry a lot?!
Don't we all cry for our children at times, special needs or not?
That afternoon in that waiting room has definitely stuck with me. I try to keep my emotions a tiny bit more in check in front of B. But I don't entirely regret the fact that I so often wear my heart on my sleeve. It's a part of who I am, and hopefully B will always know that it's not because I'm crazy (well, not too crazy, at least) and instead that I just really, really care.
Ahh, insecurities. Aren't they a bitch?
There was a boy there, a couple of years older than B, waiting with his mother for his appointment.
It was clear that the boy was on the high functioning end of the spectrum. His social skills were a bit immature and robotic; things that my delightfully non-judgmental B didn't care about at all.
At one point, the boy said to his mother (while looking at me), 'Is that his Mom?'
Before the mother could answer, B did it for her by saying, 'Yes. That's my Mom. She cries a lot!'
WTF?!!
Fortunately, the Mom looked at me and said with what I believed to be complete honesty, 'That's okay. I do too!'
We laughed about the waiting room at a therapy center being a safe zone for such frankness. Perhaps B, even at the age of three, also sensed that because I have never ever heard him say something like that before that moment! (and I better not ever again!)
Naturally I fixated on this statement for a little while. Does he really think I cry a lot? Do I cry a lot?!
Don't we all cry for our children at times, special needs or not?
That afternoon in that waiting room has definitely stuck with me. I try to keep my emotions a tiny bit more in check in front of B. But I don't entirely regret the fact that I so often wear my heart on my sleeve. It's a part of who I am, and hopefully B will always know that it's not because I'm crazy (well, not too crazy, at least) and instead that I just really, really care.
Ahh, insecurities. Aren't they a bitch?
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