Bit of a downer last time, sorry. But sometimes, I think I work better when I'm upset, I get more focused and more persistent. I did some digging and found some really good resources this week! I got a hold of my contact at Virginia Tech and next week we're going to figure out how we can get the PRT training. It looks like it'll be the end of October or the beginning of November, which is too far away, but we will just make do!
I also found some great stuff from VCU's autism center. They offer several web courses and webinars, and a couple of them you can just do whenever. So Adam and I are working on one right now that focuses on what to do right after your child is diagnosed with autism. I've been through Autism Speaks 100 day kit, but the VCU one had info on the Medicaid waivers, and it's also local, so I figured we could get something out of it. We did get some better info on the Medicaid waivers, and we think we might qualify for one, but need some things clarified, so I emailed one of the mentors they suggested and am hoping to hear back early next week. The waiver would allow us to get ABA therapy for Bug. Adam also is looking into appealing for ABA to be covered. We know that there are other families in the company who would benefit, so it would be really wonderful if we could lobby for coverage.
VCU also had info on a web course available through Michigan State that teaches parents how to promote and increase children's communication through play. There's not a ton of info on it, but the description says that it's developmental and naturalistic intervention techniques, and evidence based--which is basically what we're looking for for Bug. I'm hopeful that doing the course will help us fill the gap until we can get the PRT training in the fall.
In therapy news:
Bug threw me a ball a couple of times while we were at Adam's softball game. Super cool. He's also been pretty interested in the basketball hoop and we got him to sit on our shoulders and throw the ball into the hoop today. :) He even gave batting a ball off a tee a shot.
OT yesterday was so great. Bug had been asking to see Geri allllllll week, so I was happy we could finally go. He tried and really took to a new swing that was more of a back and forth, rocking horse type movement. He didn't quite get that he could move it himself, but he spent a lot of time on it which was really good. He also decided that he would go down a slide backwards, which was so funny to watch. He even managed to walk up the step backwards a couple of times too. It was maybe not quite what Geri had planned or expected, but really, it shows that he's making good progress in his motor planning skills. Bug still tends to be a tough nut to crack when it comes to doing fine motor tasks (like puzzles or coloring). He really resists doing them, even though a lot of it he can do quite well now. So we will have to think about how to make it more appealing to him. I've been meaning to print off letter worksheets for the paint dots. Hopefully Geri and I can find some inspiration to get him going on some pre-writing activities.
Bug is still stimming a lot, but he actually handles it pretty well when I tell him we need to move on to something else. I do wonder how much of it is just boredom, so he reverts to something that is comforting and keeps him active. I also think to some extent it's tied to my stress level, although that could just be that I'm a lot more aware of it the more stressed I am.
All in all, the week ended very well. I'm feeling a bit more (not a ton, but a little at least) in control of where we're headed or at least I have some ideas on things we can look into. Hopefully next week brings us even more answers. :)
Friday, July 25, 2014
Monday, July 21, 2014
Overwhelmed
Not much to report with therapies. We keep plugging along.
Home has been an interesting mix:
On the one hand, Bug has been a lot more interested in balls and balloons. He caught a ball without help for the first time a couple weeks ago and has been fairly cooperative with us showing him how to throw the ball. Last week he spontaneously asked for a balloon, which we took outside for some playing. He really enjoyed throwing it over his head and watching it fall, putting it on the car and in the bushes and telling me to blow it up (because we kept popping them). It was super cool to watch him randomly ask for something and then engage with it and with me appropriately.
Today for the first time, he told me that he wanted a specific pair of shorts to wear. We've been working hard at getting him to get himself dressed and undressed (undressed is much easier). Hopefully we can start having him take the initiative to getting his own clothes out of drawers and getting himself ready in the mornings.
He's also been pretending to talk on our phones--just saying "hello"--which is cute and fun. (If anyone wants to call him, it'd be great practice and a good experience for him!)
The not good stuff:
Bug has completely refused to wear his headphones to do therapeutic listening for at least a week now. Adam and I are not sure what happened.
We feel like Bug is spending an increasing amount of time engaging in "self-stim" behaviors. Self-stims (for Bug: jumping, flapping, galloping and making strange noises) are supposed to be how autistic kids cope/calm themselves if they get overwhelmed or are anxious, but what's so weird to me is that Bug's self-stims are worse--much worse--at home. I would think home would be more calming. He spends almost all of his time during the day self-stimming, frequently while hyperfocusing on books, movie cases, or electronic stuff. To me, it seems they wind him up and then we lose him--like we can't get him to focus on anything else.
Almost any attempt Adam or I make to engage Bug, even in activities he typically likes, he refuses, runs away from, or throws a fit. Sometimes he'll tell us he wants to go outside, so we'll say "Let's get shoes on" and then he'll tell us no. If we ask if he wants to go out, he'll say no. Most of the engagement we get is repeating whatever he says, which isn't getting us anywhere. We bought him some new Angry Bird games (physical, not on the tablet) and he has almost zero interest in anything about them except the boxes. Any attempt to get him to focus on the game aspect, or even just playing with the little figurines, is met with serious resistance.
I'm reading about PRT, and want to implement it, but I don't even know where to start on my own. We were hoping to do PRT training with Virginia Tech this fall, but I haven't heard back in three weeks, so I guess I need to get a hold of them. I really truly cannot understand why I'm not hearing back from people.
The other big issue is that we're trying to make decisions about some form of preschool for Bug. One of the things that PRT really encourages is that the child has plenty of exposure to his typically developing peers, to help learn and build social skills. Truly, they encourage parents to give their children the same opportunities that they'd give them if they weren't autistic. I've been so opposed to preschool, but now I'm wondering if that would actually be the best path. I don't know if I can provide Bug with enough peer exposure without putting him in preschool. I don't know if I even want to be his teacher and interventionist, as well as his mother. I don't know if that's best for him or for us as a family.
It's just been such a mix of good and bad that it's kind of overwhelmed the whole house I think. But there's not much to do other than try to make small steps to lead to big changes. And keep wishing and hoping and praying that we catch the break we need.
Home has been an interesting mix:
On the one hand, Bug has been a lot more interested in balls and balloons. He caught a ball without help for the first time a couple weeks ago and has been fairly cooperative with us showing him how to throw the ball. Last week he spontaneously asked for a balloon, which we took outside for some playing. He really enjoyed throwing it over his head and watching it fall, putting it on the car and in the bushes and telling me to blow it up (because we kept popping them). It was super cool to watch him randomly ask for something and then engage with it and with me appropriately.
Today for the first time, he told me that he wanted a specific pair of shorts to wear. We've been working hard at getting him to get himself dressed and undressed (undressed is much easier). Hopefully we can start having him take the initiative to getting his own clothes out of drawers and getting himself ready in the mornings.
He's also been pretending to talk on our phones--just saying "hello"--which is cute and fun. (If anyone wants to call him, it'd be great practice and a good experience for him!)
The not good stuff:
Bug has completely refused to wear his headphones to do therapeutic listening for at least a week now. Adam and I are not sure what happened.
We feel like Bug is spending an increasing amount of time engaging in "self-stim" behaviors. Self-stims (for Bug: jumping, flapping, galloping and making strange noises) are supposed to be how autistic kids cope/calm themselves if they get overwhelmed or are anxious, but what's so weird to me is that Bug's self-stims are worse--much worse--at home. I would think home would be more calming. He spends almost all of his time during the day self-stimming, frequently while hyperfocusing on books, movie cases, or electronic stuff. To me, it seems they wind him up and then we lose him--like we can't get him to focus on anything else.
Almost any attempt Adam or I make to engage Bug, even in activities he typically likes, he refuses, runs away from, or throws a fit. Sometimes he'll tell us he wants to go outside, so we'll say "Let's get shoes on" and then he'll tell us no. If we ask if he wants to go out, he'll say no. Most of the engagement we get is repeating whatever he says, which isn't getting us anywhere. We bought him some new Angry Bird games (physical, not on the tablet) and he has almost zero interest in anything about them except the boxes. Any attempt to get him to focus on the game aspect, or even just playing with the little figurines, is met with serious resistance.
I'm reading about PRT, and want to implement it, but I don't even know where to start on my own. We were hoping to do PRT training with Virginia Tech this fall, but I haven't heard back in three weeks, so I guess I need to get a hold of them. I really truly cannot understand why I'm not hearing back from people.
The other big issue is that we're trying to make decisions about some form of preschool for Bug. One of the things that PRT really encourages is that the child has plenty of exposure to his typically developing peers, to help learn and build social skills. Truly, they encourage parents to give their children the same opportunities that they'd give them if they weren't autistic. I've been so opposed to preschool, but now I'm wondering if that would actually be the best path. I don't know if I can provide Bug with enough peer exposure without putting him in preschool. I don't know if I even want to be his teacher and interventionist, as well as his mother. I don't know if that's best for him or for us as a family.
It's just been such a mix of good and bad that it's kind of overwhelmed the whole house I think. But there's not much to do other than try to make small steps to lead to big changes. And keep wishing and hoping and praying that we catch the break we need.
Monday, July 14, 2014
Bug loves to spell, s-p-e-l-l!
The cute: We are doing so much singing over here! The ABCs, songs from Super Why!, the Wheels on the Bus. It's so neat to hear Bug singing and he loooooves it. His favorite song from Super Why! has us singing "What letter makes the ___ sound?" and Bug can frequently respond, which is really cool!
Adam also discovered that Bug likes seeing the flash go off on the camera, so if you turn on the flash, he'll actually look at the camera for pictures!
Bug is still doing some good hard work in Speech. Today they worked on verbs using picture flashcards. Kathy noticed that Bug would get particularly excited about "driving" and "swinging"--which are two of his favorite things. This opened up a great conversation between us about different therapy methods. I'm so happy because Kathy is actually aware of and very interested in PRT, so I definitely think we'll be able to incorporate it into speech therapy. She also gave me some suggestions for other schooling options rather than just public school. It was a great conversation.
OT last week was a bit of a struggle. Bug can be so resistant to sitting down with Geri for focused tasks, although once she gets him started he usually completes them without too much fuss. I think he is still trying to challenge her and see how much he can control the sessions. So we definitely have some work to do.
Geri also referred us to an ABA therapist who she thought might be able to work with Bug. I've been able to contact her and unfortunately, she's not covered by our insurance. She did highly recommend we talk to Adam's employer about covering ABA services, and said that some of her clients have had success doing so. She also gave me a bunch of resources about ABA to look into, and mentioned that she is familiar with PRT too. I'm still really hoping we can figure out a way to get Bug at least some time with a trained therapist.
I also got and read the PRT Pocket Guide, and liked it so much I ordered the larger manual. PRT is a version of ABA that is more child-led and less rigidly structured than traditional ABA. It involves finding things that motivate the child to teach speech and social skills, then using positive reinforcement related to whatever you'd doing. It's a lot more natural and to me, makes a ton of sense. One of the things the book suggests is teaching the child questions like "What is it?" and "What's happening". Bug can answer questions like this (at least sometimes) but he has never asked them. Having the ability to ask means he can start requesting information he needs and build his vocabulary which opens doors for joint attention and social interactions. So these are things we're going to focus on at home, especially while we don't have ABA.
One of the things I have been thinking a lot about and trying to work on is providing Bug with a balance of therapy, social experiences and learning while still allowing him plenty of opportunity to be home and "explore without an agenda." My goal is to find more social opportunities for him, especially with typical children his age, so he can develop models and friends. I'm struggling a bit because so many people put their children in preschool and I'm just not sure about it. So, as usual, I've got lots of research to do and then Adam and I have some talking, praying and decision-making too. Who knew raising a kid was so complicated!?! :P
We still have another speech and OT this week, so we keep chugging along!
Adam also discovered that Bug likes seeing the flash go off on the camera, so if you turn on the flash, he'll actually look at the camera for pictures!
Bug is still doing some good hard work in Speech. Today they worked on verbs using picture flashcards. Kathy noticed that Bug would get particularly excited about "driving" and "swinging"--which are two of his favorite things. This opened up a great conversation between us about different therapy methods. I'm so happy because Kathy is actually aware of and very interested in PRT, so I definitely think we'll be able to incorporate it into speech therapy. She also gave me some suggestions for other schooling options rather than just public school. It was a great conversation.
OT last week was a bit of a struggle. Bug can be so resistant to sitting down with Geri for focused tasks, although once she gets him started he usually completes them without too much fuss. I think he is still trying to challenge her and see how much he can control the sessions. So we definitely have some work to do.
Geri also referred us to an ABA therapist who she thought might be able to work with Bug. I've been able to contact her and unfortunately, she's not covered by our insurance. She did highly recommend we talk to Adam's employer about covering ABA services, and said that some of her clients have had success doing so. She also gave me a bunch of resources about ABA to look into, and mentioned that she is familiar with PRT too. I'm still really hoping we can figure out a way to get Bug at least some time with a trained therapist.
I also got and read the PRT Pocket Guide, and liked it so much I ordered the larger manual. PRT is a version of ABA that is more child-led and less rigidly structured than traditional ABA. It involves finding things that motivate the child to teach speech and social skills, then using positive reinforcement related to whatever you'd doing. It's a lot more natural and to me, makes a ton of sense. One of the things the book suggests is teaching the child questions like "What is it?" and "What's happening". Bug can answer questions like this (at least sometimes) but he has never asked them. Having the ability to ask means he can start requesting information he needs and build his vocabulary which opens doors for joint attention and social interactions. So these are things we're going to focus on at home, especially while we don't have ABA.
One of the things I have been thinking a lot about and trying to work on is providing Bug with a balance of therapy, social experiences and learning while still allowing him plenty of opportunity to be home and "explore without an agenda." My goal is to find more social opportunities for him, especially with typical children his age, so he can develop models and friends. I'm struggling a bit because so many people put their children in preschool and I'm just not sure about it. So, as usual, I've got lots of research to do and then Adam and I have some talking, praying and decision-making too. Who knew raising a kid was so complicated!?! :P
We still have another speech and OT this week, so we keep chugging along!
Sunday, July 6, 2014
Lots to report!
It's been too long. We've just been so busy, so I guess that means there's a lot to update!
We finally got the full diagnosis report for Bug. I was getting a little worried because we were told 4 weeks, then 4-6 weeks, but we have it now, which is a relief. There was nothing too surprising in the report, it was mostly just a more detailed, clinical version of the preliminary report that we received shortly after his clinic. There were a few good suggestions about things we can work with Bug on, so I'll be sure to share it with our therapists.
I also got Bug pre-registered for Early Childhood and took him for a hearing test. He did much better than I thought he would--or worried he would. The audiologist did a great job with him and we were able to get accurate information. The only thing she noted was a processing delay which we've known about. She did recommend that we have his hearing checked again when he's more open to having earbuds put in his ears. Right now he just doesn't tolerate that at all.
I'm still working to find ABA. We are able to get in to the Virginia Tech clinic for Pivotal Response Treatment training in October, which is much later than I want. I put out a few inquiries with other places and am hoping we can find something sooner. It's frustrating because I'm really scraping around trying to find info on PRT clinics and trainings and I feel like it shouldn't be this hard. But I'm determined to make it work. I did also just order the PRT Pocket Guide and am hoping that I can use that to at least get started.
My goal is to start in home therapy this summer yet. I reorganized the playroom to be more autism/sensory friendly and I'm hoping to get Bug used to doing some work at home with me. He's been great about Legos, but I've tried to get him to do some work that our speech therapist sent home with us and he is seriously resistant. I know it'll just be like everything else, that we have to start a routine and ease into it.
Right now at home we are having some struggles with Bug being tired and cranky and resistant to us. I'm hoping it's a short-lived phase because it's draining for all of us to be at odds all the time. We also seem to have lost his good requesting phase "Mommy/Daddy, I want ____ please". He's gone back to just "Mommy/Daddy, _____" and needs A LOT of prompting to do the whole sentence. Hopefully we just need a little maintenance.
Outside of that, speech is going very well. Our normal therapist, Laura, is on maternity leave and we now see Kathy. It took a couple of sessions, but Bug has transitioned very well and does great work with Kathy too. She is really working hard to meet his sensory needs to help him focus. Deep pressure (like squeezes and hugs) seems to be his favorite right now. On Wednesday she brought me into his classroom so I could see what they'd been doing. She had him match a physical object (cup, plate etc) to the picture of the object and he did well. Then she took those away and just asked him to give her or touch the picture of an object and he couldn't. With help, he would touch it. So we've been trying to work with him at home to respond to that type of question/request. He usually will do it if we're looking at a book, but when I brought out the cards that he used with Kathy he was really resistant.
On the OT side of things, it seems like we've been going through a lot of sensory stuff lately. All last week Bug was pushing his head into things like the couch, or had me squeeze his head between my hands. I talked with Geri about it and we're going to try a brushing protocol. Basically, I'll use special brushes that provide deep pressure and "brush" Bug 5-6 times a day, for a minute or so each time. Geri said that if we can do it that frequently for 5 or 6 weeks, we should see a lot of good results, but even less frequently has benefits.
I'm happy to say that Bug has been trying new gross motor activities both in therapy and at parks. This past week he started rocking himself on the little springy horses at the park and is getting really good at climbing the various types of ladders. We've been working with him to use the big boy swings and he seems to be ok with the idea, so I'm hoping we can move to those from the baby swings.
Fine motor tasks are still hard for Bug to sit for. He is getting excellent at Legos and even will build his own towers without us asking. In therapy, Geri has to work hard to get Bug to sit for a task, even if it's something he can do, like a puzzle. Not sure how much of this is a ASD thing versus a 3 year old thing though.
We've been doing very well with "eerlrs". Bug is now doing therapeutic listening for about 10 minutes at a time twice a day. Our goal is to get him to 30 minutes/time, but sloooowwwlllly we are making progress.
All in all, he's still doing so well. I'm hoping that if we get a good routine in place that will help clear up some of the behavioral struggles we've been having. The last few weeks have been busy and it's been hard to maintain any schedule, so hopefully we can fix that up! Here's hoping we have another good week in therapies and I know the rest will fall into place eventually!
We finally got the full diagnosis report for Bug. I was getting a little worried because we were told 4 weeks, then 4-6 weeks, but we have it now, which is a relief. There was nothing too surprising in the report, it was mostly just a more detailed, clinical version of the preliminary report that we received shortly after his clinic. There were a few good suggestions about things we can work with Bug on, so I'll be sure to share it with our therapists.
I also got Bug pre-registered for Early Childhood and took him for a hearing test. He did much better than I thought he would--or worried he would. The audiologist did a great job with him and we were able to get accurate information. The only thing she noted was a processing delay which we've known about. She did recommend that we have his hearing checked again when he's more open to having earbuds put in his ears. Right now he just doesn't tolerate that at all.
I'm still working to find ABA. We are able to get in to the Virginia Tech clinic for Pivotal Response Treatment training in October, which is much later than I want. I put out a few inquiries with other places and am hoping we can find something sooner. It's frustrating because I'm really scraping around trying to find info on PRT clinics and trainings and I feel like it shouldn't be this hard. But I'm determined to make it work. I did also just order the PRT Pocket Guide and am hoping that I can use that to at least get started.
My goal is to start in home therapy this summer yet. I reorganized the playroom to be more autism/sensory friendly and I'm hoping to get Bug used to doing some work at home with me. He's been great about Legos, but I've tried to get him to do some work that our speech therapist sent home with us and he is seriously resistant. I know it'll just be like everything else, that we have to start a routine and ease into it.
Right now at home we are having some struggles with Bug being tired and cranky and resistant to us. I'm hoping it's a short-lived phase because it's draining for all of us to be at odds all the time. We also seem to have lost his good requesting phase "Mommy/Daddy, I want ____ please". He's gone back to just "Mommy/Daddy, _____" and needs A LOT of prompting to do the whole sentence. Hopefully we just need a little maintenance.
Outside of that, speech is going very well. Our normal therapist, Laura, is on maternity leave and we now see Kathy. It took a couple of sessions, but Bug has transitioned very well and does great work with Kathy too. She is really working hard to meet his sensory needs to help him focus. Deep pressure (like squeezes and hugs) seems to be his favorite right now. On Wednesday she brought me into his classroom so I could see what they'd been doing. She had him match a physical object (cup, plate etc) to the picture of the object and he did well. Then she took those away and just asked him to give her or touch the picture of an object and he couldn't. With help, he would touch it. So we've been trying to work with him at home to respond to that type of question/request. He usually will do it if we're looking at a book, but when I brought out the cards that he used with Kathy he was really resistant.
On the OT side of things, it seems like we've been going through a lot of sensory stuff lately. All last week Bug was pushing his head into things like the couch, or had me squeeze his head between my hands. I talked with Geri about it and we're going to try a brushing protocol. Basically, I'll use special brushes that provide deep pressure and "brush" Bug 5-6 times a day, for a minute or so each time. Geri said that if we can do it that frequently for 5 or 6 weeks, we should see a lot of good results, but even less frequently has benefits.
I'm happy to say that Bug has been trying new gross motor activities both in therapy and at parks. This past week he started rocking himself on the little springy horses at the park and is getting really good at climbing the various types of ladders. We've been working with him to use the big boy swings and he seems to be ok with the idea, so I'm hoping we can move to those from the baby swings.
Fine motor tasks are still hard for Bug to sit for. He is getting excellent at Legos and even will build his own towers without us asking. In therapy, Geri has to work hard to get Bug to sit for a task, even if it's something he can do, like a puzzle. Not sure how much of this is a ASD thing versus a 3 year old thing though.
We've been doing very well with "eerlrs". Bug is now doing therapeutic listening for about 10 minutes at a time twice a day. Our goal is to get him to 30 minutes/time, but sloooowwwlllly we are making progress.
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