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!
Wednesday, May 25, 2011
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.
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