Being the procrastinator that I tend to be, I am just now getting around to posting about Christmas cards. I really wanted to get a new picture of the kids made into a photo card from Shutterfly. They have so many different cards to choose from!! We've had all kinds of different things made from them, from cards, to prints, to really amazing photo books . We gave the hubby's grandma one last year or the year before, with pictures of all the great grandkids in it, she LOVED it. She took it with her to breakfast, on all of her trips for months, it was great.
But it is challenging to get a picture of all four of the kids ...and not just the one with ASD! Lol. Though he is a challenge. He doesn't want to sit, he doesn't want to look at the camera, you try to bribe him with gum or candy and then he's chewing with his mouth all wide open or playing with gum. ; ) And don't even get me started on monkey baby!
Those of you who know me, know how much I cherish photographs. Our house is filled with them, and I have a camera with me at all times. I love taking pictures of Rocket in his element, and catching his smiles. And thanks to Shutterfly doing this promotion for bloggers, I will be able to get 50 photo cards for Christmas. They just might not get to you until New Years. ; )
Happy Holidays, all!
Tuesday, December 14, 2010
Monday, December 13, 2010
Monday update
Hi all. Just wanted to post an update. Last week was hell, sleep wise, so I've been a bit too scrambled to sit down and write. This weekend went much better-well, to be honest the hubby and I probably got a lot less sleep than usual, but that was due to some unrelated stress-Rocket was back to being asleep by 11. ; )
Still puttering along at speech. He had a ton of makeups though from the summer of the flake, so he's been able to go twice a week fairly often. Making more sound productions. No new words yet, though I did almost get him to say ball this weekend!! He was trying. : ) He was doing the "ba" sound when prompted too, well until he got the giggles over it. *Swoon* He's such a funny boy.
We go to our first FEAT (http://www.feat.org/) event on Wednesday. Really looking forward to it. Someone from FEAT called today, and they're even going to have a packet of into and a few books of my request from a list of 5 waiting for us when we get there! How nice is that? They seem like they will be a great ally and resource for us.
We have been able to encourage a lot more eye contact and conversation with Rocket lately. It's all still gibberish, but he is definitely telling us something, lol! Now that we know what we're dealing with, that he's not just extremely independent, we know how important it is to encourage those things. It's early on, but so far, it's much improved over the last month!
One of the most important lessons I think we are learning right now, is who in our friends and family are going to stand by our side and walk through this journey with us, and who is going to choose one of the hardest times in our lives to pile more stress and worry on top of us, if not bail out all together. Thank you to those of you who are along for the journey!
Still puttering along at speech. He had a ton of makeups though from the summer of the flake, so he's been able to go twice a week fairly often. Making more sound productions. No new words yet, though I did almost get him to say ball this weekend!! He was trying. : ) He was doing the "ba" sound when prompted too, well until he got the giggles over it. *Swoon* He's such a funny boy.
We go to our first FEAT (http://www.feat.org/) event on Wednesday. Really looking forward to it. Someone from FEAT called today, and they're even going to have a packet of into and a few books of my request from a list of 5 waiting for us when we get there! How nice is that? They seem like they will be a great ally and resource for us.
We have been able to encourage a lot more eye contact and conversation with Rocket lately. It's all still gibberish, but he is definitely telling us something, lol! Now that we know what we're dealing with, that he's not just extremely independent, we know how important it is to encourage those things. It's early on, but so far, it's much improved over the last month!
One of the most important lessons I think we are learning right now, is who in our friends and family are going to stand by our side and walk through this journey with us, and who is going to choose one of the hardest times in our lives to pile more stress and worry on top of us, if not bail out all together. Thank you to those of you who are along for the journey!
Friday, December 3, 2010
Friday ramblings
So, for the updates. Rocket does NOT have Fragile X. We were 99% sure he would not, but it's always good to know for sure.
We met with his service coordinator this morning. She is very nice, it's always enjoyable to talk to her. She apologized again about Flakey McFlakerson-his original in home speech therapist. She brought us some info to go over and we updated our IFSP.
The good news is, Atla is able to provide up to 20 hours a week of an ABA based program. We can either do in home, or clinic based-which is what we're doing now for speech. I need to think about that one ...in home is of course familiar and much easier for everyone, but he seems to do well in a clinic based setting. Of course, he did well with the in home speech therapist the two times she showed up. ; ) So we shall see. We have to attend a training seminar before we can begin the program, which we're actually excited to do-well other than figuring out who in the heck can watch the kids for possibly 3 occasions. Sadly, we do not have a whole lot of options for childcare within our friends and families. Most people are okay with hanging out with the tweens, but not so eager to hang out with the baby and toddler. Which is understandable, I guess ...just hard. Plus, the family who are happy to watch them all, work ...and oddly enough, all of these parent events or appointments you can't take kids to always seem to be scheduled during work hours. Lol. Imagine that. The hubby and I have been out on exactly one date in the last 13 months, and before that ....who knows! We don't even do our Friday lunch dates with the little guys anymore, just too hard to predict how Rocket will be on any given day.
See why I titled this Friday ramblings? Lol.
So, the bad part of this all, is because of the holidays and waiting lists and all, he likely won't begin the program until February. That's TWO MONTHS away. Which probably doesn't sound like much, unless of course you have a child with an ASD. Then you know how very critical each week can be. So I'm pretty bummed about that. I think about how much he regressed since the summer ...we met with Alta first back in June and filled out all our initial stuff at the end of May. In 6 months, he went from failing only the language portion of everything and having a simple speech delay, to failing every developmental area and being diagnosed with Autism. He seems to exhibit more and more symptoms almost daily, so frankly, it scares the shit out of me to think about what a 2 month wait might bring.
And then of course I beat myself up for even having to rely on Alta to help with services. For not having the means to go enroll him in a private program the day after the diagnosis and foot the bill. Fact of the matter is, two lay offs and two kids-both in a less than two year time period, have not been kind to us financially. And that's a HUGE understatement, lol. We also bought a house-which really, was cheaper than renting a place that would fit the now 6 of us. We had been in a 2 bedroom, 1 bath duplex for the previous 10 years and it just wasn't feasible anymore. It is hard not to kick yourself when you're already down, and hate on yourself for not being able to do everything you want to do. It's hard not to feel like you're failing your child, failing to provide everything they need. : (
We just have to do all we can do here in the meantime. He will continue with speech at Bright Starts, we're going to start using a big picture based daily schedule, PECS. I have some books on the way-ranging from floortime to a Gluten and casein free diet.
On a happier note, one of the ASD book reviews I read was from a grandmother of a little girl with Autism. She was talking about some of her stims (self stimulating behaviors-repetitive things that they often do) and how one of them is spinning and kind of dancing. She said that they've chosen to embrace it, rather than get her to stop ...that she's engaged with them while they're spinning with her, she's sharing enjoyment and excitement with them. It really stuck with me, because we do the same thing with Rocket whenever possible. Some of the stims/repetitions are extremely hard to deal with just from a logistics standpoint. For example, his lining up of objects across the floor, all over the house. It's simply impossible for them to never get touched, not with a baby and a dog. It's really heartbreaking to see him so broken up and hysterical if his line of blocks gets touched. It's hard for friends and family to understand that when he's having a meltdown over it, the worst thing you can do is to push them in a pile with your foot and say "you can't throw your toys around, that's not nice." But some of the other stims-like his acting out of Sponge Bob scenes. Do I love that my child is fixated on Sponge Bob, of all cartoons? Of course not. This is the mom who would veto half of the cartoons on PBS! Lol. But we can play along with him. Last night, I was feeding monkey baby, and he started doing Sponge Bob's dance from the episode where he gets "sun bleached." He does this many times a day. Hubby, and then the girl's, started doing it along with him. It was AWESOME!!! Rocket was SO happy. It was something they could share with him, and have fun with him. Moments like that, even if they seem weird to other people, are some of the best moments we have right now.
I just have to stay hopeful that he will progress in the months we're waiting for a new program to start, and not regress. We will do everything we possibly can to ensure he does ...and try to believe that what we can do is enough. At least for now.
We met with his service coordinator this morning. She is very nice, it's always enjoyable to talk to her. She apologized again about Flakey McFlakerson-his original in home speech therapist. She brought us some info to go over and we updated our IFSP.
The good news is, Atla is able to provide up to 20 hours a week of an ABA based program. We can either do in home, or clinic based-which is what we're doing now for speech. I need to think about that one ...in home is of course familiar and much easier for everyone, but he seems to do well in a clinic based setting. Of course, he did well with the in home speech therapist the two times she showed up. ; ) So we shall see. We have to attend a training seminar before we can begin the program, which we're actually excited to do-well other than figuring out who in the heck can watch the kids for possibly 3 occasions. Sadly, we do not have a whole lot of options for childcare within our friends and families. Most people are okay with hanging out with the tweens, but not so eager to hang out with the baby and toddler. Which is understandable, I guess ...just hard. Plus, the family who are happy to watch them all, work ...and oddly enough, all of these parent events or appointments you can't take kids to always seem to be scheduled during work hours. Lol. Imagine that. The hubby and I have been out on exactly one date in the last 13 months, and before that ....who knows! We don't even do our Friday lunch dates with the little guys anymore, just too hard to predict how Rocket will be on any given day.
See why I titled this Friday ramblings? Lol.
So, the bad part of this all, is because of the holidays and waiting lists and all, he likely won't begin the program until February. That's TWO MONTHS away. Which probably doesn't sound like much, unless of course you have a child with an ASD. Then you know how very critical each week can be. So I'm pretty bummed about that. I think about how much he regressed since the summer ...we met with Alta first back in June and filled out all our initial stuff at the end of May. In 6 months, he went from failing only the language portion of everything and having a simple speech delay, to failing every developmental area and being diagnosed with Autism. He seems to exhibit more and more symptoms almost daily, so frankly, it scares the shit out of me to think about what a 2 month wait might bring.
And then of course I beat myself up for even having to rely on Alta to help with services. For not having the means to go enroll him in a private program the day after the diagnosis and foot the bill. Fact of the matter is, two lay offs and two kids-both in a less than two year time period, have not been kind to us financially. And that's a HUGE understatement, lol. We also bought a house-which really, was cheaper than renting a place that would fit the now 6 of us. We had been in a 2 bedroom, 1 bath duplex for the previous 10 years and it just wasn't feasible anymore. It is hard not to kick yourself when you're already down, and hate on yourself for not being able to do everything you want to do. It's hard not to feel like you're failing your child, failing to provide everything they need. : (
We just have to do all we can do here in the meantime. He will continue with speech at Bright Starts, we're going to start using a big picture based daily schedule, PECS. I have some books on the way-ranging from floortime to a Gluten and casein free diet.
On a happier note, one of the ASD book reviews I read was from a grandmother of a little girl with Autism. She was talking about some of her stims (self stimulating behaviors-repetitive things that they often do) and how one of them is spinning and kind of dancing. She said that they've chosen to embrace it, rather than get her to stop ...that she's engaged with them while they're spinning with her, she's sharing enjoyment and excitement with them. It really stuck with me, because we do the same thing with Rocket whenever possible. Some of the stims/repetitions are extremely hard to deal with just from a logistics standpoint. For example, his lining up of objects across the floor, all over the house. It's simply impossible for them to never get touched, not with a baby and a dog. It's really heartbreaking to see him so broken up and hysterical if his line of blocks gets touched. It's hard for friends and family to understand that when he's having a meltdown over it, the worst thing you can do is to push them in a pile with your foot and say "you can't throw your toys around, that's not nice." But some of the other stims-like his acting out of Sponge Bob scenes. Do I love that my child is fixated on Sponge Bob, of all cartoons? Of course not. This is the mom who would veto half of the cartoons on PBS! Lol. But we can play along with him. Last night, I was feeding monkey baby, and he started doing Sponge Bob's dance from the episode where he gets "sun bleached." He does this many times a day. Hubby, and then the girl's, started doing it along with him. It was AWESOME!!! Rocket was SO happy. It was something they could share with him, and have fun with him. Moments like that, even if they seem weird to other people, are some of the best moments we have right now.
I just have to stay hopeful that he will progress in the months we're waiting for a new program to start, and not regress. We will do everything we possibly can to ensure he does ...and try to believe that what we can do is enough. At least for now.
Monday, November 29, 2010
Monday OT eval/bloodwork update
OT eval was uneventful. He doesn't have many fine or gross motor skill troubles, which is good. So they will not recommend OT therapies, based on that. Which we knew. ; ) Got his report from the speech eval, same thing-though he is "severely delayed" in all aspects of language, according to their evaluation, there is no medical reason for it. Apparantly ASD is not a medical condition, but whatever, right? We're just being good little seals, barking and jumping through the hoops to get the fish. The fish, in the case, being denial letters!
I also called to check on his bloodwork, only the basic stuff is back, so no Fragile X or anything. But all of his levels are fine. No elevated lead, thyroid is fine, liver looks good, his white and red cell counts are good. All of that was expected, but still good to hear.
Had a mishap this morning at speech. Since his OT eval was 15 minutes after speech would have ended, we had to schedule an earlier appointment this week, and it couldn't be with his regular guy. Rocket wasn't having it. Hubby had to take him in the room (I haven't been having to sit in on sessions for a few weeks) and he just laid on the floor and cried. : ( Luckily for us, his guy's 9 a.m. didn't show up, and he went in and helped out. Then Rocket was good. He likes Ferdinand! I'm definitely going to push for him to stay there for speech services, if for some reason Alta wants to change after Friday.
The rest of the week is uneventful until Friday. Work for hubby, school for TNQTQ, Flower Child is off until January. Then Friday is our meeting with Alta-I'll update then!
I also called to check on his bloodwork, only the basic stuff is back, so no Fragile X or anything. But all of his levels are fine. No elevated lead, thyroid is fine, liver looks good, his white and red cell counts are good. All of that was expected, but still good to hear.
Had a mishap this morning at speech. Since his OT eval was 15 minutes after speech would have ended, we had to schedule an earlier appointment this week, and it couldn't be with his regular guy. Rocket wasn't having it. Hubby had to take him in the room (I haven't been having to sit in on sessions for a few weeks) and he just laid on the floor and cried. : ( Luckily for us, his guy's 9 a.m. didn't show up, and he went in and helped out. Then Rocket was good. He likes Ferdinand! I'm definitely going to push for him to stay there for speech services, if for some reason Alta wants to change after Friday.
The rest of the week is uneventful until Friday. Work for hubby, school for TNQTQ, Flower Child is off until January. Then Friday is our meeting with Alta-I'll update then!
Saturday, November 27, 2010
The Horse Boy
We watched this movie on Netflix instant tonight, called The Horse Boy. Documentary about a couple who takes their son with Autism to Mongolia, after traditional therapies have done little to help him. We're not planning on packing up and heading to Mongolia any time soon ; ) but it was a very moving story. It was almost eerie to watch the child having his meltdowns, because it was like watching Rocket. You see how people react to him in public, and it's just sad. We've been getting "those" looks long before we had any idea what was causing the meltdowns ...the inconsolable meltdowns.
So far ...the fact that we so often CAN NOT HELP HIM, is the worst part of it. Not knowing what will trigger a tantrum, and then not being able to make it all better, it's heartbreaking. As a mother, a parent ...you just want to make it all better. You don't want to sit there helplessly while your toddler-who is essentially still a baby, sobs and holds his breath and generally acts like he's being tortured. All you want to do is hold them and kiss them and take away the pain and you can't. Every touch, every hug, it just makes it worse. So you sit there next to him while he cries, sometimes you can't control yourself and you cry along with him, and eventually he may decide he wants to sit with you and then you can rock him and settle him down some. Or he snaps out of it as quickly as it was started, and you're left feeling like you just got one of the most brutal ass kickings of your life.
Monday is the OT eval at Kaiser, as well as speech. We had to adjust the time of his speech appointment to make the OT appointment, so he won't be with his guy. : ( I am hoping that he doesn't freak. He's not liking new people very much these days. Another new thing, he absolutely does NOT like anyone holding Monkey Baby. This is a brand new thing ...we had company (family) two days in a row and he was totally fine with them being here, until they held the baby. He actually grabbed his feet and tried to yank him off of my grandfather!
He just crashed out, this is the earliest he's gone to sleep all week! 9:30. He actually had a very decent day, especially considering he didn't nap. He came into our bed around 5, and woke up for good at 8 something, and was happy and all smiles. I adore that. Lots of eye contact today too, both briefly for requests-which of course we are encouraging and reinforcing!! and just independently looking at us and engaging. Hubby has a theory that he seems much worse when he's not eating bananas regularly, and he had 2 today. Things that make you go hmmm.
I'll update after the OT eval and then again Friday or next weekend, after we meet with his coordinator at Alta Regional. I'm really hoping that they are able to provide a lot more therapies for him. Keep your fingers crossed, please!
So far ...the fact that we so often CAN NOT HELP HIM, is the worst part of it. Not knowing what will trigger a tantrum, and then not being able to make it all better, it's heartbreaking. As a mother, a parent ...you just want to make it all better. You don't want to sit there helplessly while your toddler-who is essentially still a baby, sobs and holds his breath and generally acts like he's being tortured. All you want to do is hold them and kiss them and take away the pain and you can't. Every touch, every hug, it just makes it worse. So you sit there next to him while he cries, sometimes you can't control yourself and you cry along with him, and eventually he may decide he wants to sit with you and then you can rock him and settle him down some. Or he snaps out of it as quickly as it was started, and you're left feeling like you just got one of the most brutal ass kickings of your life.
Monday is the OT eval at Kaiser, as well as speech. We had to adjust the time of his speech appointment to make the OT appointment, so he won't be with his guy. : ( I am hoping that he doesn't freak. He's not liking new people very much these days. Another new thing, he absolutely does NOT like anyone holding Monkey Baby. This is a brand new thing ...we had company (family) two days in a row and he was totally fine with them being here, until they held the baby. He actually grabbed his feet and tried to yank him off of my grandfather!
He just crashed out, this is the earliest he's gone to sleep all week! 9:30. He actually had a very decent day, especially considering he didn't nap. He came into our bed around 5, and woke up for good at 8 something, and was happy and all smiles. I adore that. Lots of eye contact today too, both briefly for requests-which of course we are encouraging and reinforcing!! and just independently looking at us and engaging. Hubby has a theory that he seems much worse when he's not eating bananas regularly, and he had 2 today. Things that make you go hmmm.
I'll update after the OT eval and then again Friday or next weekend, after we meet with his coordinator at Alta Regional. I'm really hoping that they are able to provide a lot more therapies for him. Keep your fingers crossed, please!
Tuesday, November 23, 2010
Some good news
Finally heard back from the Kaiser member services woman. They don't need any more info than what we've provided to the ASD Center (good, 'cause that's all we have!), and their meeting is on the 1st. So, we likely won't have denial letters in hand on the 3rd when we meet with Alta again, but at least we know they should be here by mid December. Hopefully. ; ) Oh and let's hope they don't pull the same thing when he has his formal OT eval on Monday.
I also called Social Security to find out what the income limits are for our family size for SSI, and we're under. Soooo ...hooray, we're poor?! Lol. So once we have all the eval reports and everything from Kaiser in, I think we're going to apply for him. I doubt it will be much, but even if it helps with gas to and from his therapies, it's something. Gas alone is killing us right now, I'm easily spending our 2 week gas budget for BOTH cars just on mine. In one week! Not good. And apparently the Gas Card Fairy does NOT exist!! I was shocked! ; )
Rocket is becoming very wary of new people. I'm pretty sure it's because almost every time he's seen someone new lately, they've messed with him, in one form or another! I actually felt bad for all the women at Home Depot this weekend who tried to talk to him (women love Rocket! He's a cutie!). He would just get this horribly terrified scrunched up face and you knew he was about 2 seconds away from losing it! Poor guy.
Oh, before I forget ...since this is the web and all, and you never know who's reading, I'm using nicknames for everyone. Rocket is obvious. ; ) As is The Hubby, I'm sure. Then we have Monkey Baby, my Flower Child (should be pretty obvious if you think about it) and TNQTK aka The Not Quite Teen Queen. ; ) If there's any confusion, just let me know privately.
Well, Rocket just came up to me, all smiles and seems to want to play, yay! That is my cue to go! ; )
I also called Social Security to find out what the income limits are for our family size for SSI, and we're under. Soooo ...hooray, we're poor?! Lol. So once we have all the eval reports and everything from Kaiser in, I think we're going to apply for him. I doubt it will be much, but even if it helps with gas to and from his therapies, it's something. Gas alone is killing us right now, I'm easily spending our 2 week gas budget for BOTH cars just on mine. In one week! Not good. And apparently the Gas Card Fairy does NOT exist!! I was shocked! ; )
Rocket is becoming very wary of new people. I'm pretty sure it's because almost every time he's seen someone new lately, they've messed with him, in one form or another! I actually felt bad for all the women at Home Depot this weekend who tried to talk to him (women love Rocket! He's a cutie!). He would just get this horribly terrified scrunched up face and you knew he was about 2 seconds away from losing it! Poor guy.
Oh, before I forget ...since this is the web and all, and you never know who's reading, I'm using nicknames for everyone. Rocket is obvious. ; ) As is The Hubby, I'm sure. Then we have Monkey Baby, my Flower Child (should be pretty obvious if you think about it) and TNQTK aka The Not Quite Teen Queen. ; ) If there's any confusion, just let me know privately.
Well, Rocket just came up to me, all smiles and seems to want to play, yay! That is my cue to go! ; )
Monday, November 22, 2010
I made a comment last week
I said, "If Kaiser had a throat, I would punch it in it." I meant it. ; ) The hoops that they make you jump through just to get a denial letter, it is simply ridiculous. It's bad enough that they do not cover ANY therapies for children with Autism. None. Zero. (Unless you are one of the few who have the time and money to sue them and are lucky enough to win-I happen to have neither of those at the moment!). Even in those cases, think about all the time you're either still waiting for therapies, or going broke paying for them yourself. It's disgusting.
So this is what's going on, as of now. He was diagnosed on the 11th, we have that formal diagnosis. We meet with Alta Regional (Sac County's EI) on the 3rd. In order for them to cover some of the 25-40 HOURS a week of ABA (Applied Behavorial Analysis-something that has been proven to be effective in helping children/people with Autism) that he has been recommended to receive, we need denial letters from Kaiser stating that they will not cover any of his therapies. Kaiser knows they won't, we know they won't, Alta knows they won't ....yet of course we need the letters. Which is fine. We were told we had to do the following in order to get the denial-
A huge range of bloodwork (done on Friday)
A formal speech evaluation at Kaiser (done last Wednesday)
A formal OT evaluation at Kaiser (appointment is Monday the 29th)
At his speech eval last week, they found no physical causes for him to non verbal-which we knew, obviously. No cleft palate, etc. So she was very nice and said she'd type the report up that day and she knows OT will do it the same day as well, so we should be good to go with our denial letter by the 3rd. I mean, yay! you're not going to help him ...but at least they're telling us quickly, right?
Wrong. Last week, I get a letter from someone in member services, saying they've received our request for speech and want all of our outside speech paperwork. Um, okay. You mean the eval from Bright Starts, and the inital eval from Alta? Okay sure, we gave that to the ASD center on the 11th, but we'll send it to you too. Except that, big surprise, she never answers the phone and hasn't returned my (so far) 2 calls to let us know if this is in fact, what they want. They also were kind enough to put in the letter that it will be discussed at a "routine meeting" sometime in the future-no hint of WHEN, and that we'll receive notification of their determination within 15 days of THAT date. The date we don't know.
Fabulous. This all seems like such a huge waste of time, both our's, and more importantly, our son's! Their time and resources as well. The worst part is we already KNOW they cover no services. Us asking them to is simply a formality to get the damn denial letters.
I was so hopeful that he was going to be able to begin more therapies next month. That seems very unlikely now. The 45 minutes a week of speech he gets now is not going to cut it much longer.
Kaiser seriously can suck it most of the time. Did I mention that due to his sensory issues, brushing his teeth is akin to murdering him and he therefore has about a million and one cavities?? And of course you can not take him to a regular dentist or even a ped dentist because the only thing worse than brushing his teeth is taking him to any sort of medical office. ; ) I mean seriously ...if one day, out of the blue, you hear a bloodcurdling scream in the distance-it probably means Rocket is at one of his appointments! So the poor guy is going to be sedated, which Kaiser's Delta Dental does not cover??? I'm going to fight like hell to get them to cover it-I mean COME ON. He's not even two and a half and he has Autism, I'm not seeing a whole lot of other options outside of letting all his teeth rot ...and then what's next? ...our Christmas photo will have him all missing teeth and sporting dirty feet and a saggy diaper. It's a white trash Christmas, everybody! ; )
Financial stress is a sad understatement these days!
But on a happier note, speech went well today. It has been for a while, thank goodness. He and his guy are a good match, it's a routine for him now ...he walks right up and opens the doors and goes in. He has trouble leaving his favorite toy in the waiting area and going back into the therapy room, but last week he even held his guy's hand and walked back with him! So we're making progress ...maybe not actual verbal progress, but I'll take what I can get right now!
That's our day so far. Speech is good, Kaiser sucks ...that's about it. ; )
So this is what's going on, as of now. He was diagnosed on the 11th, we have that formal diagnosis. We meet with Alta Regional (Sac County's EI) on the 3rd. In order for them to cover some of the 25-40 HOURS a week of ABA (Applied Behavorial Analysis-something that has been proven to be effective in helping children/people with Autism) that he has been recommended to receive, we need denial letters from Kaiser stating that they will not cover any of his therapies. Kaiser knows they won't, we know they won't, Alta knows they won't ....yet of course we need the letters. Which is fine. We were told we had to do the following in order to get the denial-
A huge range of bloodwork (done on Friday)
A formal speech evaluation at Kaiser (done last Wednesday)
A formal OT evaluation at Kaiser (appointment is Monday the 29th)
At his speech eval last week, they found no physical causes for him to non verbal-which we knew, obviously. No cleft palate, etc. So she was very nice and said she'd type the report up that day and she knows OT will do it the same day as well, so we should be good to go with our denial letter by the 3rd. I mean, yay! you're not going to help him ...but at least they're telling us quickly, right?
Wrong. Last week, I get a letter from someone in member services, saying they've received our request for speech and want all of our outside speech paperwork. Um, okay. You mean the eval from Bright Starts, and the inital eval from Alta? Okay sure, we gave that to the ASD center on the 11th, but we'll send it to you too. Except that, big surprise, she never answers the phone and hasn't returned my (so far) 2 calls to let us know if this is in fact, what they want. They also were kind enough to put in the letter that it will be discussed at a "routine meeting" sometime in the future-no hint of WHEN, and that we'll receive notification of their determination within 15 days of THAT date. The date we don't know.
Fabulous. This all seems like such a huge waste of time, both our's, and more importantly, our son's! Their time and resources as well. The worst part is we already KNOW they cover no services. Us asking them to is simply a formality to get the damn denial letters.
I was so hopeful that he was going to be able to begin more therapies next month. That seems very unlikely now. The 45 minutes a week of speech he gets now is not going to cut it much longer.
Kaiser seriously can suck it most of the time. Did I mention that due to his sensory issues, brushing his teeth is akin to murdering him and he therefore has about a million and one cavities?? And of course you can not take him to a regular dentist or even a ped dentist because the only thing worse than brushing his teeth is taking him to any sort of medical office. ; ) I mean seriously ...if one day, out of the blue, you hear a bloodcurdling scream in the distance-it probably means Rocket is at one of his appointments! So the poor guy is going to be sedated, which Kaiser's Delta Dental does not cover??? I'm going to fight like hell to get them to cover it-I mean COME ON. He's not even two and a half and he has Autism, I'm not seeing a whole lot of other options outside of letting all his teeth rot ...and then what's next? ...our Christmas photo will have him all missing teeth and sporting dirty feet and a saggy diaper. It's a white trash Christmas, everybody! ; )
Financial stress is a sad understatement these days!
But on a happier note, speech went well today. It has been for a while, thank goodness. He and his guy are a good match, it's a routine for him now ...he walks right up and opens the doors and goes in. He has trouble leaving his favorite toy in the waiting area and going back into the therapy room, but last week he even held his guy's hand and walked back with him! So we're making progress ...maybe not actual verbal progress, but I'll take what I can get right now!
That's our day so far. Speech is good, Kaiser sucks ...that's about it. ; )
Saturday, November 20, 2010
November 11th, 2010
That is the day that everything became official. The day our recent concerns were given an official diagnosis-Autism Disorder. 9 days ago. It's still kind of surreal even though it was expected. Everything went really fast, honestly.
Some back story-
Rocket came into the world on August 23rd, 2008. He was too impatient for us to make it to The Birth Center, and Daddy ended up delivering him in the passenger seat of our minivan-which was forever after known as "The Birthmobile." It was a quick and easy birth, actually, and he even scored 10 APGARs from the EMT's who arrived shortly after his birth. ; )
He developed normally, was on schedule or even early for everything other than talking. It was odd when he wasn't using any "real" words at 1, but we figured well, boys often talk later than girls. At 15 months, it was more concerning. By 18 months, it was very concerning to us, not only because of the lack of words, but because of the lack of communication, period. The only way you knew Rocket wanted a drink, for example, was when he threw his cup at your face. ; ) There was no looking, no pointing. We talked to his pedi, called EI (Early Intervention) and it took a few months to get them out. His evaluation with them was when he was 22 months old. At that time, it still looked like more of a general speech delay and no one was talking Autism. He got approved for speech, Kaiser dragged their feet on sending the denial letter, and he finally got started with an in home speech therapist in August, when he was 2.
She sucked. And that's being kind. ; ) She was a flake and a half, and out of 7-8 sessions that he SHOULD have had, she showed for 2. So we talked to EI and got him set up with a clinic based setting. I wasn't too thrilled about the weekly drive with a baby who seems to loathe the car, but what can you do? There were no more in home people available and he needed speech therapy. It has ended up being the perfect place and setting for him though, and he and his speech therapist are buddies. They even sport the same hair-do sometimes ...pretty sure they bonded over it one week. ; )
So we're up to the first week of October, now. 4 months since the initial eval with EI. He's had some speech, and no verbal progress. He's actually regressed. He's lost most of the few words he did have. We're noticing a lot of other things, too. He rarely makes eye contact. He has these little rituals he does daily, mainly dealing with lining up objects, or grouping them in designs, and he gets EXTREMELY upset if they're disturbed. He won't let anyone play with him unless it's a game of chase or something similar, and he doesn't seem to notice other children. He screams if you try to read a book to him, yet he can spend 2 hours lining up, dismantling, and re-lining up water bottles or blocks.
We bring up our concerns at the baby's 9 month checkup, which also happens to be The Hubby's 40th birthday, October 29th. Ped says she'll talk to the developmentalist, who is so concerned by what we've described that she calls me the following Monday. (This is pretty much unheard of in our 12 years with Kaiser.) She refers us to their new Autism Center, who also calls us right away and schedules his evaluation on November 11th.
It was about 4 hours, total. We were both so nervous going in, even though we knew it was coming. At that point, honestly we were almost more worried about NOT getting a diagnosis. Then what? Then what's wrong? Because something was obviously "off."
Well meaning friends and family were like "oh, I'm sure he's fine! He seems like every other kid I know." Well, when you know what you're looking for, it's PAINFULLY obvious. We knew within 10 minutes of the actual ASD eval that he'd be diagnosed. It was really sad to watch. Hubby stayed with him in the room with the doctors, and I was on the other side of a one way mirror with the baby. The sound was really amplified, and it just kept coming-one doctor was on the floor with him at this point, another taking notes. "Eye contact with that?" "No." "Brief eye contact, but not meaningful." "No eye contact." Etc. etc.
They were very kind, of course. We took a break to give them time to score and we met back up and they said "unfortunately, your concerns are founded." One doctor, the one who was on the floor with him, said that when he does make eye contact, "it's beautiful, and it just melts your heart, and we want to see so much more of that." I'm tearing up just thinking about it. Because it is truly beautiful, and we've always just taken it for granted with our other children. But when it's not constant, it's almost like a precious gift ...one that I know some other parents with children on the spectrum don't get. : ( There are periods, usually at least a few a day, where Rocket *really* see's us, where he's SO there ...and he looks AT you and not through you, and his face lights up and his eyes sparkle and it just lights up the whole damn room and you feel like your heart is going to burst, it's so full of love for him.
So here we are. 9 days later. We have some hoops to jump through with Kaiser-all just for them to deny his services. They're special like that. While the kid's ped is amazing (and the reason we keep Kaiser for them), and everyone at the Autism Center seems great, Kaiser really does nothing for kids with ASD other than diagnose them and send them on their way. He's had his massive blood draw done (they're checking for lead and other toxins, for Fragile X, his thyroid, and tons of other stuff), his formal speech eval through them, and his OT eval with them is on the 29th. Then we meet with EI again on the 3rd of December, and hopefully get more therapies going. None of which Kaiser will cover, and we have no idea what EI can provide.
This is just the beginning of our journey. No matter what, he's our Big Guy, our Rocket. We will do everything we can for him. Most importantly, we will love him, always.
Some back story-
Rocket came into the world on August 23rd, 2008. He was too impatient for us to make it to The Birth Center, and Daddy ended up delivering him in the passenger seat of our minivan-which was forever after known as "The Birthmobile." It was a quick and easy birth, actually, and he even scored 10 APGARs from the EMT's who arrived shortly after his birth. ; )
He developed normally, was on schedule or even early for everything other than talking. It was odd when he wasn't using any "real" words at 1, but we figured well, boys often talk later than girls. At 15 months, it was more concerning. By 18 months, it was very concerning to us, not only because of the lack of words, but because of the lack of communication, period. The only way you knew Rocket wanted a drink, for example, was when he threw his cup at your face. ; ) There was no looking, no pointing. We talked to his pedi, called EI (Early Intervention) and it took a few months to get them out. His evaluation with them was when he was 22 months old. At that time, it still looked like more of a general speech delay and no one was talking Autism. He got approved for speech, Kaiser dragged their feet on sending the denial letter, and he finally got started with an in home speech therapist in August, when he was 2.
She sucked. And that's being kind. ; ) She was a flake and a half, and out of 7-8 sessions that he SHOULD have had, she showed for 2. So we talked to EI and got him set up with a clinic based setting. I wasn't too thrilled about the weekly drive with a baby who seems to loathe the car, but what can you do? There were no more in home people available and he needed speech therapy. It has ended up being the perfect place and setting for him though, and he and his speech therapist are buddies. They even sport the same hair-do sometimes ...pretty sure they bonded over it one week. ; )
So we're up to the first week of October, now. 4 months since the initial eval with EI. He's had some speech, and no verbal progress. He's actually regressed. He's lost most of the few words he did have. We're noticing a lot of other things, too. He rarely makes eye contact. He has these little rituals he does daily, mainly dealing with lining up objects, or grouping them in designs, and he gets EXTREMELY upset if they're disturbed. He won't let anyone play with him unless it's a game of chase or something similar, and he doesn't seem to notice other children. He screams if you try to read a book to him, yet he can spend 2 hours lining up, dismantling, and re-lining up water bottles or blocks.
We bring up our concerns at the baby's 9 month checkup, which also happens to be The Hubby's 40th birthday, October 29th. Ped says she'll talk to the developmentalist, who is so concerned by what we've described that she calls me the following Monday. (This is pretty much unheard of in our 12 years with Kaiser.) She refers us to their new Autism Center, who also calls us right away and schedules his evaluation on November 11th.
It was about 4 hours, total. We were both so nervous going in, even though we knew it was coming. At that point, honestly we were almost more worried about NOT getting a diagnosis. Then what? Then what's wrong? Because something was obviously "off."
Well meaning friends and family were like "oh, I'm sure he's fine! He seems like every other kid I know." Well, when you know what you're looking for, it's PAINFULLY obvious. We knew within 10 minutes of the actual ASD eval that he'd be diagnosed. It was really sad to watch. Hubby stayed with him in the room with the doctors, and I was on the other side of a one way mirror with the baby. The sound was really amplified, and it just kept coming-one doctor was on the floor with him at this point, another taking notes. "Eye contact with that?" "No." "Brief eye contact, but not meaningful." "No eye contact." Etc. etc.
They were very kind, of course. We took a break to give them time to score and we met back up and they said "unfortunately, your concerns are founded." One doctor, the one who was on the floor with him, said that when he does make eye contact, "it's beautiful, and it just melts your heart, and we want to see so much more of that." I'm tearing up just thinking about it. Because it is truly beautiful, and we've always just taken it for granted with our other children. But when it's not constant, it's almost like a precious gift ...one that I know some other parents with children on the spectrum don't get. : ( There are periods, usually at least a few a day, where Rocket *really* see's us, where he's SO there ...and he looks AT you and not through you, and his face lights up and his eyes sparkle and it just lights up the whole damn room and you feel like your heart is going to burst, it's so full of love for him.
So here we are. 9 days later. We have some hoops to jump through with Kaiser-all just for them to deny his services. They're special like that. While the kid's ped is amazing (and the reason we keep Kaiser for them), and everyone at the Autism Center seems great, Kaiser really does nothing for kids with ASD other than diagnose them and send them on their way. He's had his massive blood draw done (they're checking for lead and other toxins, for Fragile X, his thyroid, and tons of other stuff), his formal speech eval through them, and his OT eval with them is on the 29th. Then we meet with EI again on the 3rd of December, and hopefully get more therapies going. None of which Kaiser will cover, and we have no idea what EI can provide.
This is just the beginning of our journey. No matter what, he's our Big Guy, our Rocket. We will do everything we can for him. Most importantly, we will love him, always.
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