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!
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