Being the procrastinator that I tend to be, I am just now getting around to posting about Christmas cards. I really wanted to get a new picture of the kids made into a photo card from Shutterfly. They have so many different cards to choose from!! We've had all kinds of different things made from them, from cards, to prints, to really amazing photo books . We gave the hubby's grandma one last year or the year before, with pictures of all the great grandkids in it, she LOVED it. She took it with her to breakfast, on all of her trips for months, it was great.
But it is challenging to get a picture of all four of the kids ...and not just the one with ASD! Lol. Though he is a challenge. He doesn't want to sit, he doesn't want to look at the camera, you try to bribe him with gum or candy and then he's chewing with his mouth all wide open or playing with gum. ; ) And don't even get me started on monkey baby!
Those of you who know me, know how much I cherish photographs. Our house is filled with them, and I have a camera with me at all times. I love taking pictures of Rocket in his element, and catching his smiles. And thanks to Shutterfly doing this promotion for bloggers, I will be able to get 50 photo cards for Christmas. They just might not get to you until New Years. ; )
Happy Holidays, all!
Tuesday, December 14, 2010
Monday, December 13, 2010
Monday update
Hi all. Just wanted to post an update. Last week was hell, sleep wise, so I've been a bit too scrambled to sit down and write. This weekend went much better-well, to be honest the hubby and I probably got a lot less sleep than usual, but that was due to some unrelated stress-Rocket was back to being asleep by 11. ; )
Still puttering along at speech. He had a ton of makeups though from the summer of the flake, so he's been able to go twice a week fairly often. Making more sound productions. No new words yet, though I did almost get him to say ball this weekend!! He was trying. : ) He was doing the "ba" sound when prompted too, well until he got the giggles over it. *Swoon* He's such a funny boy.
We go to our first FEAT (http://www.feat.org/) event on Wednesday. Really looking forward to it. Someone from FEAT called today, and they're even going to have a packet of into and a few books of my request from a list of 5 waiting for us when we get there! How nice is that? They seem like they will be a great ally and resource for us.
We have been able to encourage a lot more eye contact and conversation with Rocket lately. It's all still gibberish, but he is definitely telling us something, lol! Now that we know what we're dealing with, that he's not just extremely independent, we know how important it is to encourage those things. It's early on, but so far, it's much improved over the last month!
One of the most important lessons I think we are learning right now, is who in our friends and family are going to stand by our side and walk through this journey with us, and who is going to choose one of the hardest times in our lives to pile more stress and worry on top of us, if not bail out all together. Thank you to those of you who are along for the journey!
Still puttering along at speech. He had a ton of makeups though from the summer of the flake, so he's been able to go twice a week fairly often. Making more sound productions. No new words yet, though I did almost get him to say ball this weekend!! He was trying. : ) He was doing the "ba" sound when prompted too, well until he got the giggles over it. *Swoon* He's such a funny boy.
We go to our first FEAT (http://www.feat.org/) event on Wednesday. Really looking forward to it. Someone from FEAT called today, and they're even going to have a packet of into and a few books of my request from a list of 5 waiting for us when we get there! How nice is that? They seem like they will be a great ally and resource for us.
We have been able to encourage a lot more eye contact and conversation with Rocket lately. It's all still gibberish, but he is definitely telling us something, lol! Now that we know what we're dealing with, that he's not just extremely independent, we know how important it is to encourage those things. It's early on, but so far, it's much improved over the last month!
One of the most important lessons I think we are learning right now, is who in our friends and family are going to stand by our side and walk through this journey with us, and who is going to choose one of the hardest times in our lives to pile more stress and worry on top of us, if not bail out all together. Thank you to those of you who are along for the journey!
Friday, December 3, 2010
Friday ramblings
So, for the updates. Rocket does NOT have Fragile X. We were 99% sure he would not, but it's always good to know for sure.
We met with his service coordinator this morning. She is very nice, it's always enjoyable to talk to her. She apologized again about Flakey McFlakerson-his original in home speech therapist. She brought us some info to go over and we updated our IFSP.
The good news is, Atla is able to provide up to 20 hours a week of an ABA based program. We can either do in home, or clinic based-which is what we're doing now for speech. I need to think about that one ...in home is of course familiar and much easier for everyone, but he seems to do well in a clinic based setting. Of course, he did well with the in home speech therapist the two times she showed up. ; ) So we shall see. We have to attend a training seminar before we can begin the program, which we're actually excited to do-well other than figuring out who in the heck can watch the kids for possibly 3 occasions. Sadly, we do not have a whole lot of options for childcare within our friends and families. Most people are okay with hanging out with the tweens, but not so eager to hang out with the baby and toddler. Which is understandable, I guess ...just hard. Plus, the family who are happy to watch them all, work ...and oddly enough, all of these parent events or appointments you can't take kids to always seem to be scheduled during work hours. Lol. Imagine that. The hubby and I have been out on exactly one date in the last 13 months, and before that ....who knows! We don't even do our Friday lunch dates with the little guys anymore, just too hard to predict how Rocket will be on any given day.
See why I titled this Friday ramblings? Lol.
So, the bad part of this all, is because of the holidays and waiting lists and all, he likely won't begin the program until February. That's TWO MONTHS away. Which probably doesn't sound like much, unless of course you have a child with an ASD. Then you know how very critical each week can be. So I'm pretty bummed about that. I think about how much he regressed since the summer ...we met with Alta first back in June and filled out all our initial stuff at the end of May. In 6 months, he went from failing only the language portion of everything and having a simple speech delay, to failing every developmental area and being diagnosed with Autism. He seems to exhibit more and more symptoms almost daily, so frankly, it scares the shit out of me to think about what a 2 month wait might bring.
And then of course I beat myself up for even having to rely on Alta to help with services. For not having the means to go enroll him in a private program the day after the diagnosis and foot the bill. Fact of the matter is, two lay offs and two kids-both in a less than two year time period, have not been kind to us financially. And that's a HUGE understatement, lol. We also bought a house-which really, was cheaper than renting a place that would fit the now 6 of us. We had been in a 2 bedroom, 1 bath duplex for the previous 10 years and it just wasn't feasible anymore. It is hard not to kick yourself when you're already down, and hate on yourself for not being able to do everything you want to do. It's hard not to feel like you're failing your child, failing to provide everything they need. : (
We just have to do all we can do here in the meantime. He will continue with speech at Bright Starts, we're going to start using a big picture based daily schedule, PECS. I have some books on the way-ranging from floortime to a Gluten and casein free diet.
On a happier note, one of the ASD book reviews I read was from a grandmother of a little girl with Autism. She was talking about some of her stims (self stimulating behaviors-repetitive things that they often do) and how one of them is spinning and kind of dancing. She said that they've chosen to embrace it, rather than get her to stop ...that she's engaged with them while they're spinning with her, she's sharing enjoyment and excitement with them. It really stuck with me, because we do the same thing with Rocket whenever possible. Some of the stims/repetitions are extremely hard to deal with just from a logistics standpoint. For example, his lining up of objects across the floor, all over the house. It's simply impossible for them to never get touched, not with a baby and a dog. It's really heartbreaking to see him so broken up and hysterical if his line of blocks gets touched. It's hard for friends and family to understand that when he's having a meltdown over it, the worst thing you can do is to push them in a pile with your foot and say "you can't throw your toys around, that's not nice." But some of the other stims-like his acting out of Sponge Bob scenes. Do I love that my child is fixated on Sponge Bob, of all cartoons? Of course not. This is the mom who would veto half of the cartoons on PBS! Lol. But we can play along with him. Last night, I was feeding monkey baby, and he started doing Sponge Bob's dance from the episode where he gets "sun bleached." He does this many times a day. Hubby, and then the girl's, started doing it along with him. It was AWESOME!!! Rocket was SO happy. It was something they could share with him, and have fun with him. Moments like that, even if they seem weird to other people, are some of the best moments we have right now.
I just have to stay hopeful that he will progress in the months we're waiting for a new program to start, and not regress. We will do everything we possibly can to ensure he does ...and try to believe that what we can do is enough. At least for now.
We met with his service coordinator this morning. She is very nice, it's always enjoyable to talk to her. She apologized again about Flakey McFlakerson-his original in home speech therapist. She brought us some info to go over and we updated our IFSP.
The good news is, Atla is able to provide up to 20 hours a week of an ABA based program. We can either do in home, or clinic based-which is what we're doing now for speech. I need to think about that one ...in home is of course familiar and much easier for everyone, but he seems to do well in a clinic based setting. Of course, he did well with the in home speech therapist the two times she showed up. ; ) So we shall see. We have to attend a training seminar before we can begin the program, which we're actually excited to do-well other than figuring out who in the heck can watch the kids for possibly 3 occasions. Sadly, we do not have a whole lot of options for childcare within our friends and families. Most people are okay with hanging out with the tweens, but not so eager to hang out with the baby and toddler. Which is understandable, I guess ...just hard. Plus, the family who are happy to watch them all, work ...and oddly enough, all of these parent events or appointments you can't take kids to always seem to be scheduled during work hours. Lol. Imagine that. The hubby and I have been out on exactly one date in the last 13 months, and before that ....who knows! We don't even do our Friday lunch dates with the little guys anymore, just too hard to predict how Rocket will be on any given day.
See why I titled this Friday ramblings? Lol.
So, the bad part of this all, is because of the holidays and waiting lists and all, he likely won't begin the program until February. That's TWO MONTHS away. Which probably doesn't sound like much, unless of course you have a child with an ASD. Then you know how very critical each week can be. So I'm pretty bummed about that. I think about how much he regressed since the summer ...we met with Alta first back in June and filled out all our initial stuff at the end of May. In 6 months, he went from failing only the language portion of everything and having a simple speech delay, to failing every developmental area and being diagnosed with Autism. He seems to exhibit more and more symptoms almost daily, so frankly, it scares the shit out of me to think about what a 2 month wait might bring.
And then of course I beat myself up for even having to rely on Alta to help with services. For not having the means to go enroll him in a private program the day after the diagnosis and foot the bill. Fact of the matter is, two lay offs and two kids-both in a less than two year time period, have not been kind to us financially. And that's a HUGE understatement, lol. We also bought a house-which really, was cheaper than renting a place that would fit the now 6 of us. We had been in a 2 bedroom, 1 bath duplex for the previous 10 years and it just wasn't feasible anymore. It is hard not to kick yourself when you're already down, and hate on yourself for not being able to do everything you want to do. It's hard not to feel like you're failing your child, failing to provide everything they need. : (
We just have to do all we can do here in the meantime. He will continue with speech at Bright Starts, we're going to start using a big picture based daily schedule, PECS. I have some books on the way-ranging from floortime to a Gluten and casein free diet.
On a happier note, one of the ASD book reviews I read was from a grandmother of a little girl with Autism. She was talking about some of her stims (self stimulating behaviors-repetitive things that they often do) and how one of them is spinning and kind of dancing. She said that they've chosen to embrace it, rather than get her to stop ...that she's engaged with them while they're spinning with her, she's sharing enjoyment and excitement with them. It really stuck with me, because we do the same thing with Rocket whenever possible. Some of the stims/repetitions are extremely hard to deal with just from a logistics standpoint. For example, his lining up of objects across the floor, all over the house. It's simply impossible for them to never get touched, not with a baby and a dog. It's really heartbreaking to see him so broken up and hysterical if his line of blocks gets touched. It's hard for friends and family to understand that when he's having a meltdown over it, the worst thing you can do is to push them in a pile with your foot and say "you can't throw your toys around, that's not nice." But some of the other stims-like his acting out of Sponge Bob scenes. Do I love that my child is fixated on Sponge Bob, of all cartoons? Of course not. This is the mom who would veto half of the cartoons on PBS! Lol. But we can play along with him. Last night, I was feeding monkey baby, and he started doing Sponge Bob's dance from the episode where he gets "sun bleached." He does this many times a day. Hubby, and then the girl's, started doing it along with him. It was AWESOME!!! Rocket was SO happy. It was something they could share with him, and have fun with him. Moments like that, even if they seem weird to other people, are some of the best moments we have right now.
I just have to stay hopeful that he will progress in the months we're waiting for a new program to start, and not regress. We will do everything we possibly can to ensure he does ...and try to believe that what we can do is enough. At least for now.
Subscribe to:
Posts (Atom)