This summer has just been a whirlwind of activity and changes. I won't go into all the craziness right now, maybe another post. I just want to talk about what is affecting us the most right now.
Due to the new preschool class times, we've had to make the switch from center based ABA, to in home ABA. His first session is on Friday, he will go full time (25 hours a week) on the 27th. They're working on scheduling still ...when he's full time, our new days will look like this-
Drop sisters off at 7:30
Home for ABA from 8:00-10:30
Leave for prek at 10:45, which runs from 11:15-2:15
Pick L up, possibly pick C up but I don't see her making it to the car on time. Lol. Or they might ride home with my friend and her kids, not sure yet.
ABA again from 3:30-6:00
Leaving me 2 hours a day from 7:15 a.m. until 6:00 p.m. when I'm not driving or here for ABA. It's what we do, right? : )
I'm kind of scattered today, been a week of very little sleep so far.
Yesterday was officially his last day at center. We've been talking about it daily, for at least 2 weeks. We did not want it to be a surprise, we wanted to make it seem like a fun change, we wanted him to have time to hopefully process it. He had a friend at center leave a couple weeks ago and we used that as an aide ..."just like D had his last day, remember? And how he doesn't come to center anymore."
He seemed okay. We didn't know how much he got it. He pretty much just repeated back what we said, always with a smile. We would get to center and he would happily tell everyone "I have one week left at center!" Things like that. I thought we were going to be more upset about leaving than he was.
Boy was I wrong. Monday morning, we talked when he woke up as usual (I slack horribly on this blog so I don't even remember how verbal he was during my last updates, but he's way up there now) and we talked about how this was his last week, he only had 3 days left, etc. Instant mood switch. He was PISSED. Monday was an awful day, and a worse night, behavior and mood wise. Tuesday was even worse. Yesterday morning was bad. We were able to get him to verbalize that he was angry that he was leaving center. And was he ever angry, omg. Lots of aggression. So much yelling.
I wasn't there for his final pick up. From what I was told, it was very tearful. His one tutor, N, who had been with him since almost day one ...she just cried and cried, I guess. : ( He came in furious. He was mad for hours, up until about 7:30 when I got home from L's orientation. He was trying to hit Monkey Baby and I called him over and sat him in my lap and he just grabbed me and SOBBED. He cried like his heart was being ripped out. I asked him questions I hated to ask because it made him cry more, but he needs the words to vocalize why he is feeling the way he is.
"Are you upset that it was your last day? Are you sad because you're leaving N? Are you going to miss her, and A and all of your tutors and friends?" etc. I reassured him that he can still be friends with N, that we will see them all on Friday for his cool, fun graduation party. I held him and in between his heartwrenching sobs and wails, and mine and Papa's tears, we talked.
Then he said "do you know why I'm crying? My leg hurts, because I fell down when it was D's last day." That really did happen, but it was weeks ago, so his leg is fine. So I said "are you sure your leg still hurts, or are you crying because last days are hard?" Sobbing-"yes! Last days are hard! last days are hard! I want to stay at center!" : (
I am so incredibly heart broken for him. And honestly, I am sad for us, too. Those of us with ASD kiddos (or any wide range of diagnosis) know how important those people are. The ones who know how damn hard your kid has worked to make the progress he/she has. Who celebrates it all. Who smile when they see him and stop whatever they're doing to say hi or listen to what he's saying, because he talks now, and they're genuinely happy that he is initating a greeting or showing them something he is excited about.
I'm sure his in home team will be great. I know we will get to know his new team and he will have fun with his new tutors. I have no doubts he will continue to make progress. But none of that changes how very sad those goodbyes were. : ( Not even the hundred kisses he requested last night take away his sadness. I know time will, but for now, it's really, really hard.
Thursday, August 16, 2012
Sunday, January 22, 2012
Stop ...Data time!!
So, I think it is time for some diligent data taking. Like pretty much every moment Rocket is home, we need to be taking notes. Agressision is up. Way up. Seeing some SIB still. Things in the home are being destroyed ... You know what's not fun? A pissed off 3 year old with Autism kicking a glass door and breaking it. Oh and despite weekly data for ABA, he is still eloping when the mood strikes him. I was totally one of those yelling at the top of her lungs moms in the store today. Sigh.
Soooo ... I think at least a month of daily data is in order. Hopefully we see some not yet obvious to us triggers, and can ward off at least some of these meltdowns and freakouts. It's rough, incredibly rough on everyone in the house when he is like this.
On a humorous note, he has picked up on my "that's not an option." hilarious when he tells one of us "that's not an option." Or tells Monkey Baby "first we need to do lessons, and then we can play with the Leapster." Still amazes me that not too long ago, he had 3-4 words. <3
Soooo ... I think at least a month of daily data is in order. Hopefully we see some not yet obvious to us triggers, and can ward off at least some of these meltdowns and freakouts. It's rough, incredibly rough on everyone in the house when he is like this.
On a humorous note, he has picked up on my "that's not an option." hilarious when he tells one of us "that's not an option." Or tells Monkey Baby "first we need to do lessons, and then we can play with the Leapster." Still amazes me that not too long ago, he had 3-4 words. <3
Monday, January 2, 2012
Rocket went to the store with me today
This is only a big deal because my usually UNusually social auttie has not wanted to go anywhere lately. We used to find excuses to go somewhere, anywhere on weekends or during breaks. I would stretch out grocery shopping over the weekends, wasting gas but getting him out and keeping him happy. He has become so much more social at school and ABA, but isolating more at home. He's content now to stay home all weekend, playing with his Leapster or watching videos.
But today, he wanted to go with Mommy. We went to two stores with no meltdowns. He is sick, too, so this is an even bigger deal. I hope this is the beginning of it turning around. It's been weird having him refuse outings.
But today, he wanted to go with Mommy. We went to two stores with no meltdowns. He is sick, too, so this is an even bigger deal. I hope this is the beginning of it turning around. It's been weird having him refuse outings.
Thursday, December 29, 2011
I was a blogging fail
Hopefully that will change now that I can update via mobile. I resisted this phone (such a waste of money, I am a free phone girl all the way, lol) but I have to admit, I like it and am glad the hubby insisted.
So a whole season has gone by without any updates! Honestly, I don't worry too much about updating this sometimes, my friends get frequent FB updates, and the family that wants to know what's going on with Rocket asks. Sadly, it is not very many of them!
To catch up anyone who is out of the loop and interested, though ... We had a couple IEP meetings this summer/fall. They were interesting. The distinct tried to be a bit shady but changed their tune once they saw we were informed and weren't simply going to smile and nod and sign whatever they handed me. So, Rocket is now receiving 25 hours a week of ABA, still at the same location. 8 hours a week of preschool-2 hours a day, Tuesday-Friday. Preschool has done wonders for him. It's amazing.
We're still having a lot of meltdowns and aggression and are seeing some stims return. His prek schedule was off for a while, and he has had changes at center too (ABA) with his tutors and consultants and holidays. He is just ... "off" lately.
We have random screaming now, which is super fun. Oh, and in case you were wondering, he most definitely does NOT want to wear undies ; ) Monkey Baby will be 2 next month ... I imagine I wi have 2 in diapers for a while now.
There's also lots of stress at home that I am sure he picks up on. Layoff fairy visited again, in plenty of time before Christmas. This came after a series of car and plumbing and general financial issues ... So just awesome timing. We try to shield them as much as possible, but kids are amazingly perceptive.
Overall though, the progress he keeps making is amazing. He astounds me every day.
So a whole season has gone by without any updates! Honestly, I don't worry too much about updating this sometimes, my friends get frequent FB updates, and the family that wants to know what's going on with Rocket asks. Sadly, it is not very many of them!
To catch up anyone who is out of the loop and interested, though ... We had a couple IEP meetings this summer/fall. They were interesting. The distinct tried to be a bit shady but changed their tune once they saw we were informed and weren't simply going to smile and nod and sign whatever they handed me. So, Rocket is now receiving 25 hours a week of ABA, still at the same location. 8 hours a week of preschool-2 hours a day, Tuesday-Friday. Preschool has done wonders for him. It's amazing.
We're still having a lot of meltdowns and aggression and are seeing some stims return. His prek schedule was off for a while, and he has had changes at center too (ABA) with his tutors and consultants and holidays. He is just ... "off" lately.
We have random screaming now, which is super fun. Oh, and in case you were wondering, he most definitely does NOT want to wear undies ; ) Monkey Baby will be 2 next month ... I imagine I wi have 2 in diapers for a while now.
There's also lots of stress at home that I am sure he picks up on. Layoff fairy visited again, in plenty of time before Christmas. This came after a series of car and plumbing and general financial issues ... So just awesome timing. We try to shield them as much as possible, but kids are amazingly perceptive.
Overall though, the progress he keeps making is amazing. He astounds me every day.
Monday, June 27, 2011
Someone's got a case of the Monday's!
Why does it seem like I only update on Monday's? Hmmm ....maybe it's because after a weekend of no sleep and barely sitting down, I don't want to move and this is one day I actually will sit on my ass for a few to write, and ignore the mess for a few minutes. Those Sponge Bob candies don't look like they're going anywhere, so the vacuuming can be put off for a few. ; )
So, lots of stuff going on with Rocket. He's made a lot of progress this last month or so, since I blogged last. He is labeling like crazy, and making some spontaneous requests. Most still have to be prompted, but it's still tons of progress! He's using a LOT of words now, but we're in The Land of Echolalia these days. ; ) 99% of his speech is echolalia-for those who don't know all the jargon, lol, it means to repeat back what you hear. Sometimes right away, sometimes it's delayed. So for example, I say "how was your day?" he says "how was your day?" back to me, instead of actually answering the questions. About the only time we get an actual answer is after school when I ask him what color gummy bear he wants for getting into the car. ; ) (Btw, it is always orange. "Orange gumma bear!" and then green, white, and red, lol.)
He's also had some regressions, behavior wise. It might just be the combination of Monkey Baby getting bigger and wanting to play with him more, and us having family visit recently. Not sure. All I know is the meltdowns and tantrums have returned, big time. He's becoming pretty agressive with his brother, who is in turn becoming agressive with him. :( I feel like I'm playing ref most nights, and spend my evenings trying to juggle cooking, cleaning, keeping them apart, bedtimes ...there is a reason why my handle is Mama Needs a Mocha, lol ...Mama never sleeps!
Some good news-he was "teamed" this morning, and is going to continue to be eligible for Regional Center services/funding once he turns 3. That is a BIG relief. They will pay up to 25 hours a week ...so maybe this will give us more leverage with the school district in August, when it comes time for his first IEP. Which I am dreading, by the way!
He is loving the pool, after we figured out why he hated his "swimming jacket" so much. Leave a shirt on, and he's fine. ; ) At first he would only "swim with mommy" but now he's more open to "swim with papa" or one of his sisters.
Well, the candy is calling me to be cleaned up ...I can only ignore it for so long, lol.
So, lots of stuff going on with Rocket. He's made a lot of progress this last month or so, since I blogged last. He is labeling like crazy, and making some spontaneous requests. Most still have to be prompted, but it's still tons of progress! He's using a LOT of words now, but we're in The Land of Echolalia these days. ; ) 99% of his speech is echolalia-for those who don't know all the jargon, lol, it means to repeat back what you hear. Sometimes right away, sometimes it's delayed. So for example, I say "how was your day?" he says "how was your day?" back to me, instead of actually answering the questions. About the only time we get an actual answer is after school when I ask him what color gummy bear he wants for getting into the car. ; ) (Btw, it is always orange. "Orange gumma bear!" and then green, white, and red, lol.)
He's also had some regressions, behavior wise. It might just be the combination of Monkey Baby getting bigger and wanting to play with him more, and us having family visit recently. Not sure. All I know is the meltdowns and tantrums have returned, big time. He's becoming pretty agressive with his brother, who is in turn becoming agressive with him. :( I feel like I'm playing ref most nights, and spend my evenings trying to juggle cooking, cleaning, keeping them apart, bedtimes ...there is a reason why my handle is Mama Needs a Mocha, lol ...Mama never sleeps!
Some good news-he was "teamed" this morning, and is going to continue to be eligible for Regional Center services/funding once he turns 3. That is a BIG relief. They will pay up to 25 hours a week ...so maybe this will give us more leverage with the school district in August, when it comes time for his first IEP. Which I am dreading, by the way!
He is loving the pool, after we figured out why he hated his "swimming jacket" so much. Leave a shirt on, and he's fine. ; ) At first he would only "swim with mommy" but now he's more open to "swim with papa" or one of his sisters.
Well, the candy is calling me to be cleaned up ...I can only ignore it for so long, lol.
Wednesday, May 25, 2011
Poor Rocket
He's had a rough time lately. Poor guy has been sick, nothing major but he runs these crazy high fevers when he's sick, mainly at night. And of course there is the random vomitting trick he likes to break out for us from time to time. ; ) I'm actually getting pretty good about sensing it, believe it or not ...my vomit senses are tingling! and managed to make it to him with the PB (designated bowl, lol) or a towel for all but one time. Ew, sorry ...just realized how gross that paragraph is. It's just our life, I guess I assume if you're reading this then you kinda know how it goes around here anyway. ; )
But these fevers, they scare the shit out of me. Call me crazy, but I really do wonder about a possible connection to his fevers and his Autism. Not that they caused it, or anything ...but I do think there is some sort of link or connection going on there. None of the other kids run fevers like this, outside of the 2 times we had the flu. So two times in over a decade, and for him it's 5-6 times a year.
One of his tutors at school left last week. : ( She was great, and we miss her. It's so sad, good but sad too ...Rocket has been saying "sup Ta-ta" which is him saying "What's up, Tara?" We practice names often and he keeps asking for her. I know it will take him a while to get used to her being gone. The worst part is, we don't know who is replacing her yet ...he had a new tutor lined up but she quit like 4 days into it. I guess it's better to have her leave then to stay and not totally be into it, but still. Damn. Everyone there is amazing though and I know he's in good hands in the meantime, but it would be good for him to have the stability of having a regular M/W/F afternoon tutor.
So, on to some more positive stuff. "Mama" is back!!! I don't know if I mentioned this in the last update, it's pretty new still, but he's saying "mama" again. YAY!!!!!!!!! And "Papa" is back to "Papa" and not "Pom" lol. He calls both of his sisters "Izzie" and the other day he called C "Big Izzie" and also said "Izzie's my sisters." So cool!!!!!! He recognized the shirt Monkey Baby was wearing yesterday as one they both have, and vocalized that he wanted to wear his, too.
We got him a tricycle, he can actually ride one now!! He's getting used to his "swimming jacket" again his life vest ...and is starting to tolerate it more. He LOVES the pool.
He got approved for SSI. It was kind of bittersweet. Sad that he's officially disabled, I don't know why it stings, but it just does. It's not much money at all, we knew it wouldn't be ...it will cover 2 weeks of gas, maybe?? It's better than nothing, though.
I talked to someone at L's school about their programs for kids with Autism. Sounds like we're going to have one hell of a fight this summer at his first IEP. Just want we wanted, right? I don't know why they make it so damn hard for these kids to get the help they need. I mean the progress he's made in just over 2 months of ABA is astounding. I know it doesn't work for every kid with an ASD, but the ones it does? Why not let them continue until they're ready for kinder?
Well, Monkey Baby needs me ...now that "Big Izzie" is out of school for the summer, I will be updating this once a week though!
But these fevers, they scare the shit out of me. Call me crazy, but I really do wonder about a possible connection to his fevers and his Autism. Not that they caused it, or anything ...but I do think there is some sort of link or connection going on there. None of the other kids run fevers like this, outside of the 2 times we had the flu. So two times in over a decade, and for him it's 5-6 times a year.
One of his tutors at school left last week. : ( She was great, and we miss her. It's so sad, good but sad too ...Rocket has been saying "sup Ta-ta" which is him saying "What's up, Tara?" We practice names often and he keeps asking for her. I know it will take him a while to get used to her being gone. The worst part is, we don't know who is replacing her yet ...he had a new tutor lined up but she quit like 4 days into it. I guess it's better to have her leave then to stay and not totally be into it, but still. Damn. Everyone there is amazing though and I know he's in good hands in the meantime, but it would be good for him to have the stability of having a regular M/W/F afternoon tutor.
So, on to some more positive stuff. "Mama" is back!!! I don't know if I mentioned this in the last update, it's pretty new still, but he's saying "mama" again. YAY!!!!!!!!! And "Papa" is back to "Papa" and not "Pom" lol. He calls both of his sisters "Izzie" and the other day he called C "Big Izzie" and also said "Izzie's my sisters." So cool!!!!!! He recognized the shirt Monkey Baby was wearing yesterday as one they both have, and vocalized that he wanted to wear his, too.
We got him a tricycle, he can actually ride one now!! He's getting used to his "swimming jacket" again his life vest ...and is starting to tolerate it more. He LOVES the pool.
He got approved for SSI. It was kind of bittersweet. Sad that he's officially disabled, I don't know why it stings, but it just does. It's not much money at all, we knew it wouldn't be ...it will cover 2 weeks of gas, maybe?? It's better than nothing, though.
I talked to someone at L's school about their programs for kids with Autism. Sounds like we're going to have one hell of a fight this summer at his first IEP. Just want we wanted, right? I don't know why they make it so damn hard for these kids to get the help they need. I mean the progress he's made in just over 2 months of ABA is astounding. I know it doesn't work for every kid with an ASD, but the ones it does? Why not let them continue until they're ready for kinder?
Well, Monkey Baby needs me ...now that "Big Izzie" is out of school for the summer, I will be updating this once a week though!
Saturday, April 23, 2011
Hurray for ABA!
It's been a while, I know. I think I had lofty ambitions in my hopes of updating this weekly. Life with a child with ASD alone keeps you busy, add in 3 other kids and I'm surprised sometimes that I manage to shower daily! ; )
So this will be a fairly long update, Monkey Baby is sleeping, Rocket is enjoying his new "ABC show!" and the big kids are cleaning their pit, I mean room. Hopefully I can get this all typed up before someone needs me again.
Rocket started ABA about 6 weeks ago. March 7th was his first day. I was a bit worried about how things would go with his service coordinator okay'ing the minimum amount of hours we were going to accept ; ), if you remember, she'd been fairly vague about anything above 20 hours a week and 20 hours doesn't even meet the minimum for a proven, effective program. Anyway, our worries were thankfully unfounded, we got 30 to start and after a month she agreed to 3.5 more hours a month and we're likely going to request an extra hour a day, which means he'll be getting 38.5 hours a week of ABA and an hour of speech. He can only have 40 hours total and with driving distance from school to speech we're not going to get any more than 38.5.
I can not believe the changes we have seen already. The first week it was like someone flipped a switch in him. He slept ...omg he was asleep by 9 at night, even without melatonin, even with him sleeping in the car on the way home. He's started to play with the baby. His eye contact is SO much better. He points!!!!!!!! That is so incredibly huge! He can point to what he wants. The tantrums have decreased to a minute or two of crying, max. The last week and a half he's been saying new words daily. Even names! He says "mama" again. He's started to wave hello and goodbye. And he's not just imitating, he does know what the words he's saying mean! It's incredible. He can use PECS! He paints. He imitates his peers. He's no longer afraid of the playground.
He has a fabulous team at "school." Just amazing. He has 4 tutors, a lead tutor who oversees his lessons, a behavior consultant, and a supervisor. Everyone there just loves him and they are all wonderful. It's an amazing place. Every time I drop him off or pick him up I just want to hug them all, lol! He is so happy to be there. He is happy at home. I feel like we're getting back a part of our son I was afraid was gone forever.
Don't get me wrong. We still have days that leave me in tears. But they're not every day. Most days are a joy now. A long, tiring joy ; ) but a joy nonetheless.
Oh, and did I mention he has STOPPED LINING???????? Omg, no more obsessive lining all across the floor, screaming and pushing the baby away if he gets near them. His new stim is ABC's, lol. He sings them, he watches shows with the alphabet, he writes them, he has us write them. I am sure stim's at all aren't great but we can work with this one. We can sing the ABC's to him and he'll endure tooth brushing, hair cuts, doing his hair in the morning. We totally love the ABC's here. ; )
He got his dental work done finally. His dentist was awesome and told us it was obvious we did everything we could with his teeth. Luckily he had experience with kids with ASD and their sensory issues and didn't give us the "you're horrible parents, why does your 2 year old have cavities?" look. I got a letter from his dental insurance today saying they denied covering the hospital use and one of the fillings so we'll likely get a fat bill on top of what we already paid.
Well, that went quicker than I thought, lol! We're still waiting on SSI approval or denial, hoping of course that he gets approved. Even though Alta Regional so far covers the cost of his school, we're still bleeding money to get him too and from school. It's so worth it, but I worry about keeping it up. Work is slow, sometimes nonexistent here.
I have so much more hope than I had when he was diagnosed. So much more than a month or two ago, even. Now we have to gear ourselves up for his first IEP this summer ...our school district doesn't like to have kids in programs other than their own :( so it's going to be a fight to keep him there, I'm afraid.
I will try to update this more often!
So this will be a fairly long update, Monkey Baby is sleeping, Rocket is enjoying his new "ABC show!" and the big kids are cleaning their pit, I mean room. Hopefully I can get this all typed up before someone needs me again.
Rocket started ABA about 6 weeks ago. March 7th was his first day. I was a bit worried about how things would go with his service coordinator okay'ing the minimum amount of hours we were going to accept ; ), if you remember, she'd been fairly vague about anything above 20 hours a week and 20 hours doesn't even meet the minimum for a proven, effective program. Anyway, our worries were thankfully unfounded, we got 30 to start and after a month she agreed to 3.5 more hours a month and we're likely going to request an extra hour a day, which means he'll be getting 38.5 hours a week of ABA and an hour of speech. He can only have 40 hours total and with driving distance from school to speech we're not going to get any more than 38.5.
I can not believe the changes we have seen already. The first week it was like someone flipped a switch in him. He slept ...omg he was asleep by 9 at night, even without melatonin, even with him sleeping in the car on the way home. He's started to play with the baby. His eye contact is SO much better. He points!!!!!!!! That is so incredibly huge! He can point to what he wants. The tantrums have decreased to a minute or two of crying, max. The last week and a half he's been saying new words daily. Even names! He says "mama" again. He's started to wave hello and goodbye. And he's not just imitating, he does know what the words he's saying mean! It's incredible. He can use PECS! He paints. He imitates his peers. He's no longer afraid of the playground.
He has a fabulous team at "school." Just amazing. He has 4 tutors, a lead tutor who oversees his lessons, a behavior consultant, and a supervisor. Everyone there just loves him and they are all wonderful. It's an amazing place. Every time I drop him off or pick him up I just want to hug them all, lol! He is so happy to be there. He is happy at home. I feel like we're getting back a part of our son I was afraid was gone forever.
Don't get me wrong. We still have days that leave me in tears. But they're not every day. Most days are a joy now. A long, tiring joy ; ) but a joy nonetheless.
Oh, and did I mention he has STOPPED LINING???????? Omg, no more obsessive lining all across the floor, screaming and pushing the baby away if he gets near them. His new stim is ABC's, lol. He sings them, he watches shows with the alphabet, he writes them, he has us write them. I am sure stim's at all aren't great but we can work with this one. We can sing the ABC's to him and he'll endure tooth brushing, hair cuts, doing his hair in the morning. We totally love the ABC's here. ; )
He got his dental work done finally. His dentist was awesome and told us it was obvious we did everything we could with his teeth. Luckily he had experience with kids with ASD and their sensory issues and didn't give us the "you're horrible parents, why does your 2 year old have cavities?" look. I got a letter from his dental insurance today saying they denied covering the hospital use and one of the fillings so we'll likely get a fat bill on top of what we already paid.
Well, that went quicker than I thought, lol! We're still waiting on SSI approval or denial, hoping of course that he gets approved. Even though Alta Regional so far covers the cost of his school, we're still bleeding money to get him too and from school. It's so worth it, but I worry about keeping it up. Work is slow, sometimes nonexistent here.
I have so much more hope than I had when he was diagnosed. So much more than a month or two ago, even. Now we have to gear ourselves up for his first IEP this summer ...our school district doesn't like to have kids in programs other than their own :( so it's going to be a fight to keep him there, I'm afraid.
I will try to update this more often!
Friday, January 7, 2011
Parent Training round 1
We had our first Parent Training class last night. It didn't start off on a great note. Our service coordinator is the one who set up the class-they're always the ones who handle contacting the vendors, payment, etc. So we picked our class and time and all that, and I also asked her to see if it was okay to bring Monkey Baby, as he's under 1, still nursing, and won't take a bottle or a binky and barely eats food (to the point where he's now anemic, just found out today ...yay us!) ...she checked and we were given the okay.
We get to class, we're the first ones there. Instructor comes in, and says hi ...you can tell something is up. Then she says "um, normally children aren't allowed in class. Obviously, I'm not going to kick you out, but ...." I apologized and said we were told it was okay by our SC. I'm embarrassed now, and stressing on every little sound he makes. So hubby decides he'll just wait in the car with him. I don't want him to miss the whole class and it's just basic ABA stuff which I've had enough time to read up on anyway, so during the break in the middle of the 3 hour class, we switch off. So we each got to hear half of the first class.
So, for the next 3 weeks, guess we're going to have to leave him so we can both go. Which kinda sucks, because I am sure he's going to cry quite a bit. He's at that age where everyone but people he has daily contact with are strangers, and he cries whenever they come near him. And there is the whole food issue ...the fact that we'll be gone at least 4 hours and he's still 90% nursing. I figure either way is going to be stressful though, either us splitting classes, or us both going and worrying about him.
Had a phone appointment for SSI for Rocket today. I will get some info via mail in about a week, and I have to send in a release for his medical records and all that, and then we wait. I know the likelihood of him just getting approved is pretty slim, but I can hope, right?
That's about it for today!
We get to class, we're the first ones there. Instructor comes in, and says hi ...you can tell something is up. Then she says "um, normally children aren't allowed in class. Obviously, I'm not going to kick you out, but ...." I apologized and said we were told it was okay by our SC. I'm embarrassed now, and stressing on every little sound he makes. So hubby decides he'll just wait in the car with him. I don't want him to miss the whole class and it's just basic ABA stuff which I've had enough time to read up on anyway, so during the break in the middle of the 3 hour class, we switch off. So we each got to hear half of the first class.
So, for the next 3 weeks, guess we're going to have to leave him so we can both go. Which kinda sucks, because I am sure he's going to cry quite a bit. He's at that age where everyone but people he has daily contact with are strangers, and he cries whenever they come near him. And there is the whole food issue ...the fact that we'll be gone at least 4 hours and he's still 90% nursing. I figure either way is going to be stressful though, either us splitting classes, or us both going and worrying about him.
Had a phone appointment for SSI for Rocket today. I will get some info via mail in about a week, and I have to send in a release for his medical records and all that, and then we wait. I know the likelihood of him just getting approved is pretty slim, but I can hope, right?
That's about it for today!
Wednesday, January 5, 2011
It's been a crazy couple of weeks
I apologize for not posting weekly as I planned on. Life has thrown us a few curve balls in the last few weeks. The biggest one being, The Hubby was laid off. Again. For the 3rd time in 3 years. At least it was on the 23rd of December this time, and not actual Christmas Eve like last year, I suppose! But jeez, what a way to ruin 2 Christmas's in a row! It was extremely stressful last time, the whole "omg we just bought our first home 2 months ago and our 4th baby is due in a month omgomgomg what are we going to do????" stress was way up there. Now we have the "omg we have no savings because of the last two layoffs, last two kids, and now one of our children has been diagnosed with Autism and NOT having gas money to take him to and from therapy is kind of NOT an option." stress, along with all of the usual stress that comes from dropping from being a one income family to a NO income family, at least for the time being.
So yeah ...I have no money but an abundance of stress! : ) Too bad it's not worth anything, well until someone finds a way to like extract the essence of stress and bottle it for freaks who are into that sort of thing. ; )
On to better news. Rocket has made some really cool progress!! He says mom!! And baby!! And connects them to me, and to Monkey Baby and even pictures of other babies, and a doll. He is pointing to things to show what he wants-not every time but each time is amazing! He is learning to recognize letters and can say (sometimes a slightly different version of) A, B, C, D, E, J, O (ooohh), Z (zzzz sound). He says gum, and knows what it means. Kid loves gum, lol! I swear the other night while he was pushing a car, he said GO, and then SPELLED GO, and then said it again! He also said beep beep beep perfectly clear. His eye contact is improving. I mean don't get me wrong, we still have really lousy days that leave me in tears, too. But we have more good days than bad right now.
We also start our parent training tomorrow! Every Thursday this month. I'm not thrilled that we have to complete them before Alta will provide ABA for him, simply because it would have been much better IMO to get a new program going as soon as he was officially diagnosed, but I'm actually really looking forward to learning as much as I can to better help Rocket ...all of us really.
We're doing a tour next week of a school we think we will end up using for his ABA program. They seem pretty awesome and it's not terribly far from here, but I'm guessing it's going to be a tank of gas a week to get him there and back every day. Which means our whole typical monthly gas budget will all be going to me. Yay, more stress! If only I could feed on it instead of food ; ) then it might not matter that I have no time to exercise these days. ; )
Sleep issues have sucked lately. Melatonin isn't doing a damn thing for him. It never helped Hubby either, I wonder if it's connected somehow?
Still trucking along with our weekly speech sessions. They were going amazing for a while, and then it was time to step up expectations a bit, and Rocket wasn't too happy about that. He doesn't want to imitate sounds to get his block, damn it! ; )
Christmas was interesting this year, gift wise. Rocket has taken over everything Monkey Baby got, pretty much. I guess they are developmentally more appropriate for him? He got a set of alphabet blocks that get daily use and he's digging this 3 car race track thingie he got, too. Cars and blocks are always a hit. ; ) Monkey Baby turns one in a few weeks, so I might try to get him a duplicate of the one thing they both seem to covet and Rocket refuses to give up, this pony . He even pushed it down the driveway before getting in the birthmobile yesterday ...it's a fave for sure.
Well, surprisingly, I actually got to say most of what I wanted to! I've been trying to update all week with no success ...either screaming boys, or the baby shutting down the computer every time I got a paragraph or so in. ; ) I'll update on the 1st parent training session asap.
So yeah ...I have no money but an abundance of stress! : ) Too bad it's not worth anything, well until someone finds a way to like extract the essence of stress and bottle it for freaks who are into that sort of thing. ; )
On to better news. Rocket has made some really cool progress!! He says mom!! And baby!! And connects them to me, and to Monkey Baby and even pictures of other babies, and a doll. He is pointing to things to show what he wants-not every time but each time is amazing! He is learning to recognize letters and can say (sometimes a slightly different version of) A, B, C, D, E, J, O (ooohh), Z (zzzz sound). He says gum, and knows what it means. Kid loves gum, lol! I swear the other night while he was pushing a car, he said GO, and then SPELLED GO, and then said it again! He also said beep beep beep perfectly clear. His eye contact is improving. I mean don't get me wrong, we still have really lousy days that leave me in tears, too. But we have more good days than bad right now.
We also start our parent training tomorrow! Every Thursday this month. I'm not thrilled that we have to complete them before Alta will provide ABA for him, simply because it would have been much better IMO to get a new program going as soon as he was officially diagnosed, but I'm actually really looking forward to learning as much as I can to better help Rocket ...all of us really.
We're doing a tour next week of a school we think we will end up using for his ABA program. They seem pretty awesome and it's not terribly far from here, but I'm guessing it's going to be a tank of gas a week to get him there and back every day. Which means our whole typical monthly gas budget will all be going to me. Yay, more stress! If only I could feed on it instead of food ; ) then it might not matter that I have no time to exercise these days. ; )
Sleep issues have sucked lately. Melatonin isn't doing a damn thing for him. It never helped Hubby either, I wonder if it's connected somehow?
Still trucking along with our weekly speech sessions. They were going amazing for a while, and then it was time to step up expectations a bit, and Rocket wasn't too happy about that. He doesn't want to imitate sounds to get his block, damn it! ; )
Christmas was interesting this year, gift wise. Rocket has taken over everything Monkey Baby got, pretty much. I guess they are developmentally more appropriate for him? He got a set of alphabet blocks that get daily use and he's digging this 3 car race track thingie he got, too. Cars and blocks are always a hit. ; ) Monkey Baby turns one in a few weeks, so I might try to get him a duplicate of the one thing they both seem to covet and Rocket refuses to give up, this pony . He even pushed it down the driveway before getting in the birthmobile yesterday ...it's a fave for sure.
Well, surprisingly, I actually got to say most of what I wanted to! I've been trying to update all week with no success ...either screaming boys, or the baby shutting down the computer every time I got a paragraph or so in. ; ) I'll update on the 1st parent training session asap.
Tuesday, December 14, 2010
Christmas cards
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!
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!
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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