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!
Monday, November 29, 2010
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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