Today marks one year since Bug was diagnosed with autism. On one hand, it seems like ages ago, and on the other, it seems like yesterday. I could say a lot about how I felt and how we've struggled and overcome challenges, but instead, I think I'll let Bug's day speak for us.
This morning, Bug had me adapt a Starfall song to use different letters "Listen to the short b sound...".
This morning, Bug went into my room, said "Feel the grass" and we ran our hands thru the wheatgrass. Then he said "Grass on head" and when I brought it closer to him, he rubbed it on his head.
This morning, while getting ready for OT, Bug put on his own shoes, did "Head, Shoulders, Knees and Toes" touching the correct body parts.
During OT, Bug hopped along a puzzle, tried to kick a ball, followed multiple-step directions.
During OT, Bug only swung for a few minutes (requesting that I swing him, not Frances). He got out because Wiggle was pulling interesting toys out of the closet.
During OT, Bug climbed into the ballpit, where Wiggle was. Then he requested that I go in the pit too. Then he kept flopping himself down in the ballpit because it made me laugh. Then he requested Frances come in the ballpit. Bug shared a space, about 5'x6' with three other people. We engaged in parallel play.
Then Bug decided he should stand on the edge of the ballpit and jump in. It was amazing.
This afternoon, Bug and I wrote letters in chalk on the driveway. We walked on the letters. Bug traced them with his broom.
This afternoon, Bug repeatedly asked me to spray water at him with the hose, moving closer and farther away to see how far I could get him.
I cannot put into words how proud I am of this boy. He has grown so much and continues to meet our challenges. I have no idea what will happen in the next year, but I'm excited to see how we grow!
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Thursday, May 14, 2015
Monday, January 26, 2015
Growing Up
The theme lately for Bug has been growth and maturing.
While we've been fighting off multiple rounds of sickness, Bug has been amazingly accepting of the lack of routine. Even if he is unhappy about something, he typically doesn't get too worked up, and calms down very quickly. I had to take him to the doctor last week, and I was amazed at how cooperative he was. He definitely wasn't happy about being there, but he stood on the scale by himself for the first time and made an effort to comply with the doctor's requests during the physical exam. Eventually the anxiety/uncomfortableness did take over, but it was a much better experience than we've had in a long time.
Miss Frances and I have noticed a huge improvement in Bug's willingness to try new fine motor activities and explore his surroundings. She tried a Lite-Brite with him for the first time, and after modeling a couple times, physically helping him once, he was able to put the pegs in by himself! He even seemed to like it!
He doesn't love coloring, but will do a little at least. We are still working on getting him to draw lines, but again, while he isn't particularly interested, he's at least not resistant. I've been trying to relate it to letters, which at least provides some motivation.
Today I met with his teacher and school SLP to review his IEP. We made a few changes to his goals (adding stuff about improving transitions and requesting help when needed) but for the most part, Bug is making great progress and everyone is super impressed with how well he's doing! :D Even at school he's beginning to step outside his comfort zone. His teacher said that while he has a hard time being in the gym (because of the echoing--too much sensory input) he's started to explore and move away from the teachers. He also engages in parallel play with the other boys in class, which is a HUGE step forward!
I've got some sensory ideas to run past Frances to help Bug focus a little better in speech and school, and want to work on some of the fine motor stuff at home too. I feel like we have a little bit more opportunity now that he's not as resistant and we can do some activities with both boys.
All around, we are so proud of this kiddo and how much he's grown in the past year. It's hard to believe that we've only been in private therapy for about a year!
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| Mentally and physically...I feel like I just sewed him new clothes! |
While we've been fighting off multiple rounds of sickness, Bug has been amazingly accepting of the lack of routine. Even if he is unhappy about something, he typically doesn't get too worked up, and calms down very quickly. I had to take him to the doctor last week, and I was amazed at how cooperative he was. He definitely wasn't happy about being there, but he stood on the scale by himself for the first time and made an effort to comply with the doctor's requests during the physical exam. Eventually the anxiety/uncomfortableness did take over, but it was a much better experience than we've had in a long time.
Miss Frances and I have noticed a huge improvement in Bug's willingness to try new fine motor activities and explore his surroundings. She tried a Lite-Brite with him for the first time, and after modeling a couple times, physically helping him once, he was able to put the pegs in by himself! He even seemed to like it!
Today I met with his teacher and school SLP to review his IEP. We made a few changes to his goals (adding stuff about improving transitions and requesting help when needed) but for the most part, Bug is making great progress and everyone is super impressed with how well he's doing! :D Even at school he's beginning to step outside his comfort zone. His teacher said that while he has a hard time being in the gym (because of the echoing--too much sensory input) he's started to explore and move away from the teachers. He also engages in parallel play with the other boys in class, which is a HUGE step forward!
I've got some sensory ideas to run past Frances to help Bug focus a little better in speech and school, and want to work on some of the fine motor stuff at home too. I feel like we have a little bit more opportunity now that he's not as resistant and we can do some activities with both boys.
All around, we are so proud of this kiddo and how much he's grown in the past year. It's hard to believe that we've only been in private therapy for about a year!
Friday, August 29, 2014
Kroger with Goats
Well, the last two weeks have been rough. Poor Bug is just a ball of frustration and tiredness and it has taken its toll on us all. Several days this week he was so "out of it" that he couldn't even focus long enough to give me a request--sometime he doesn't really struggle with. I feel terrible for him because he is just so all over the place.
We are still in this frustration period. Remember how I mentioned that story about going to Kroger, no the "other" Kroger...yeah. Turns out that "Kroger" just means store to Bug. Which means that I say we're going to Kroger, and he is ok until I take a "wrong" turn and then he gets progressively more upset. And not like, whiny, but like big, tantrum upset. And every day, it has gotten worse. Today he asked to go to "Kroger with goats"--what in the heck is that?! So, because I felt bad for the kid, and frustrated that we have been struggling, I showed him a few pictures of Target and Kroger and Maymont and a farmer's market...are those Kroger with goats? Some are stores, some have goats...what are you thinking of Bug? He just kept asking. So we hopped in the car and I started driving. And when he freaked out, I turned around and went the other way. And it was a lot of stress and heartbreaking. It was the worst hot or cold game I've ever played, but I just felt like we needed to figure out what "Kroger with goats" is. So the whole time I explained to him that I was trying really hard, and that I needed him to stay calm so that I could understand where he wanted me to go. I tried to ask him more questions about what we do at "Kroger with goats" but he couldn't answer. Anyway, I eventually remembered that over Easter, a mall in the West End had a petting zoo with goats. So we headed there. And it appeared that we were in the right place! I explained that the goats weren't there, that it was a special thing for Easter. We walked all over the mall and he saw lots of fountains and no goats. For the most part, he seemed accepting of that, so I'm hoping that he understands that it's not an all-the-time thing, and also that we're laying some groundwork with places and getting the correct names for them. Stuff like this always makes me feel a bit crazy, like, if I ever go insane, it's because I spent a lot of time trying to comprehend toddler-descriptions of places.
Speech this week was bad. On Monday he went in with a big fuss but calmed down and worked well the rest of the time. On Wednesday I struggled to get him out of the car and then poor Kathy had to basically carry him in to his workroom. She said that every transition was rough and he would get upset. So we are taking next week off, to give him a break. I know that speech is not the "fun" therapy, but he can't be full blown meltdown beforehand either. OT went well again, which was a relief, because of the rest of the struggles of the week. Poor Bug just shut down about 45min in, he just seemed completely exhausted. I'm not sure if he's growing or if he just felt sad because we talked a lot about the struggles, but he was worn out.He did ROCK the alphabet train puzzle and they did a floor sized jigsaw that he did well on when he was told where the pieces went. Geri gave him a lot of swinging in his favorite swing and didn't push him too much. We don't have OT next week, so I guess it's kind of a vacation for us.
Our other event on Thursday (which is OT day) was doing Bug's eligibility evaluation for the Early Childhood program. He wasn't excited about going in, but I got him in there ok. He worked with a speech therapist and an early childhood teacher who assessed him while a school psychologist observed and I answered questions and tried to keep Wiggle from destroying the place. I was not focused on Bug a lot, but I was really really unimpressed with how things went. We were in an unsetup classroom with only a handful of age-appropriate toys to assess him with. He quickly moved away from those and spent the rest of the time avoiding working with his evaluators. They didn't really do much to try to get him back on task. At one point, he was messing with a sink and a cup and the speech therapist turned to me and was like "I think he's thirsty, do you have something he can drink?" She didn't even ask him, give him a chance to respond to a question that he is likely to give a response too. It was so disheartening. At the end too, she left to make copies of previous evaluations I brought, he said bye because he figured we were done and he started heading towards the door. The other evaluator mentioned something after about him being a "flight risk" and whether I had other concerns about his behavior. Bug is not a flight risk. I explained that he has anxiety in new situations but once he is transitioned that he doesn't tantrum (and he usually doesn't tantrum anyway) and that I don't worry about him leaving where he's supposed to be. I was completely confused.
These people have more say than I do in developing an IEP for him and determining how his schooling goes, and I felt like they weren't really trying to get a fair or accurate assessment. I was honest about him having autism, and they didn't really do anything to try to accommodate that or see how high functioning he is and can be. Then he's a flight risk because someone walked out the door (without telling him where she was going) and he knew enough to realize we were about done? Give me a break. We have the IEP meeting next week, and we'll set up an IEP, but we're not taking services.
What really gets me is honestly how disrespectful evals are to kids. I understand that they've got to ask me a lot of questions, and that unfortunately, a lot of my answers highlight his weaknesses. But all this goes on right in front of him, that we all have to talk about him as if he wasn't there. And it seems ok because there's this idea that kids with autism aren't paying attention and don't care about what's going on around them. It just pisses me off. He knows. There is so much this kid cannot tell us, so much he can't verbalize, but I see emotions from him, I see the light go out from his eyes after these stupid evals. And every time I have to talk to him after, and tell him that we're not mad at him, that he's not bad or stupid. That we're trying to help him. And then I feel like a scumbag because if I listened to someone say for an hour "Kim can't do that. No, she doesn't do that. Nope, not that either" I'd probably be depressed and tired too.
Our speech therapist shared a link on their Facebook page, and I thought I'd link it here too: We're Presuming Competence. It's worth a read and probably a introspective period too. Kids are smart creatures, they can pick up on so much more than we give them credit for. Giving them the respect and boost of confidence that they CAN do anything and everything goes a lot farther than putting them in some silly, albeit convenient, box.
So where do we go from here? Well, not into the public schools, at least not this year. I'm going to bear down and make a schedule for social activities for Bug. We're putting him in Sunday school this year, I'll be teaching his class some weeks and aiding others. We're going to make picture schedules for him so he can better anticipate what we're doing each day. We're making a book of sorts with pictures of places we go so that we can show him and talk about it to help him--and us--be less frustrated and upset. We're going to focus on learning "What's that?" and "What's happening" so we can learn "Where" and eventually "Why" and "How". And we're going to work through frustration together. And I'll do as much learning to support as I can, so that I can be the best damn advocate for my boy.
I also FINALLY got around to sewing up the Lycra remnant I bought into a pillowcase of sorts. Bug knew right away what it was for and has been enjoying it whenever I bring it out. I'm hoping that he'll start using it on his own too. The idea behind Lycra is that the resistance from the stretch provides a lot of deep pressure for him, which is extremely soothing to Bug. The more he crawls around inside of it, the more sensory input, the better it is for him. He also loves it when I put it over me and become a monster and grab at him or tickle him. Lots of fun :)
The computer has been a big focus of his lately too. We've enjoyed lots of Skyping with Grandma and doing letters on Starfall. If the computer is out, Bug is there!
Bug brought out playdough last week to make "cakes" (this goes back to him learning to put candles in playdough "cake" at his autism diagnosis). While he was putting his candles in, I rolled my dough out into a "snake" and made letters. Bug loved it. He got to tell me what letters to make, and helped me make a few and he brought them over to the window and we even ended up bringing our snake outside to play. :) It's good to get him interested in another way to play with playdough and it made me realize I need to spend more time just playing with him. Even letting him do his thing with whatever it is while I do my thing and inviting him over to see branches him out more than just asking "Do you want to play cars?" and being told "No."--and that's usually what happens. It is hard, especially because there is always a lot going on, but I need to make it a higher priority.
I'm hoping we're through the worst of the tiredness and frustration. Today seemed better, although by 4 he was asking for a nap and we had to turn him down. By the time bedtime rolled around he was overtired and crazy. But I think it's nice that next week we have nowhere we have to be until his IEP meeting on Friday. That is one of the great things about not having him in school, I can cancel therapies (with advance notice) and we can take a mental health week. So hopefully I'll remember my camera and can do an awesome post about all the fun we have! :)
We are still in this frustration period. Remember how I mentioned that story about going to Kroger, no the "other" Kroger...yeah. Turns out that "Kroger" just means store to Bug. Which means that I say we're going to Kroger, and he is ok until I take a "wrong" turn and then he gets progressively more upset. And not like, whiny, but like big, tantrum upset. And every day, it has gotten worse. Today he asked to go to "Kroger with goats"--what in the heck is that?! So, because I felt bad for the kid, and frustrated that we have been struggling, I showed him a few pictures of Target and Kroger and Maymont and a farmer's market...are those Kroger with goats? Some are stores, some have goats...what are you thinking of Bug? He just kept asking. So we hopped in the car and I started driving. And when he freaked out, I turned around and went the other way. And it was a lot of stress and heartbreaking. It was the worst hot or cold game I've ever played, but I just felt like we needed to figure out what "Kroger with goats" is. So the whole time I explained to him that I was trying really hard, and that I needed him to stay calm so that I could understand where he wanted me to go. I tried to ask him more questions about what we do at "Kroger with goats" but he couldn't answer. Anyway, I eventually remembered that over Easter, a mall in the West End had a petting zoo with goats. So we headed there. And it appeared that we were in the right place! I explained that the goats weren't there, that it was a special thing for Easter. We walked all over the mall and he saw lots of fountains and no goats. For the most part, he seemed accepting of that, so I'm hoping that he understands that it's not an all-the-time thing, and also that we're laying some groundwork with places and getting the correct names for them. Stuff like this always makes me feel a bit crazy, like, if I ever go insane, it's because I spent a lot of time trying to comprehend toddler-descriptions of places.
Speech this week was bad. On Monday he went in with a big fuss but calmed down and worked well the rest of the time. On Wednesday I struggled to get him out of the car and then poor Kathy had to basically carry him in to his workroom. She said that every transition was rough and he would get upset. So we are taking next week off, to give him a break. I know that speech is not the "fun" therapy, but he can't be full blown meltdown beforehand either. OT went well again, which was a relief, because of the rest of the struggles of the week. Poor Bug just shut down about 45min in, he just seemed completely exhausted. I'm not sure if he's growing or if he just felt sad because we talked a lot about the struggles, but he was worn out.He did ROCK the alphabet train puzzle and they did a floor sized jigsaw that he did well on when he was told where the pieces went. Geri gave him a lot of swinging in his favorite swing and didn't push him too much. We don't have OT next week, so I guess it's kind of a vacation for us.
Our other event on Thursday (which is OT day) was doing Bug's eligibility evaluation for the Early Childhood program. He wasn't excited about going in, but I got him in there ok. He worked with a speech therapist and an early childhood teacher who assessed him while a school psychologist observed and I answered questions and tried to keep Wiggle from destroying the place. I was not focused on Bug a lot, but I was really really unimpressed with how things went. We were in an unsetup classroom with only a handful of age-appropriate toys to assess him with. He quickly moved away from those and spent the rest of the time avoiding working with his evaluators. They didn't really do much to try to get him back on task. At one point, he was messing with a sink and a cup and the speech therapist turned to me and was like "I think he's thirsty, do you have something he can drink?" She didn't even ask him, give him a chance to respond to a question that he is likely to give a response too. It was so disheartening. At the end too, she left to make copies of previous evaluations I brought, he said bye because he figured we were done and he started heading towards the door. The other evaluator mentioned something after about him being a "flight risk" and whether I had other concerns about his behavior. Bug is not a flight risk. I explained that he has anxiety in new situations but once he is transitioned that he doesn't tantrum (and he usually doesn't tantrum anyway) and that I don't worry about him leaving where he's supposed to be. I was completely confused.
These people have more say than I do in developing an IEP for him and determining how his schooling goes, and I felt like they weren't really trying to get a fair or accurate assessment. I was honest about him having autism, and they didn't really do anything to try to accommodate that or see how high functioning he is and can be. Then he's a flight risk because someone walked out the door (without telling him where she was going) and he knew enough to realize we were about done? Give me a break. We have the IEP meeting next week, and we'll set up an IEP, but we're not taking services.
What really gets me is honestly how disrespectful evals are to kids. I understand that they've got to ask me a lot of questions, and that unfortunately, a lot of my answers highlight his weaknesses. But all this goes on right in front of him, that we all have to talk about him as if he wasn't there. And it seems ok because there's this idea that kids with autism aren't paying attention and don't care about what's going on around them. It just pisses me off. He knows. There is so much this kid cannot tell us, so much he can't verbalize, but I see emotions from him, I see the light go out from his eyes after these stupid evals. And every time I have to talk to him after, and tell him that we're not mad at him, that he's not bad or stupid. That we're trying to help him. And then I feel like a scumbag because if I listened to someone say for an hour "Kim can't do that. No, she doesn't do that. Nope, not that either" I'd probably be depressed and tired too.
Our speech therapist shared a link on their Facebook page, and I thought I'd link it here too: We're Presuming Competence. It's worth a read and probably a introspective period too. Kids are smart creatures, they can pick up on so much more than we give them credit for. Giving them the respect and boost of confidence that they CAN do anything and everything goes a lot farther than putting them in some silly, albeit convenient, box.
So where do we go from here? Well, not into the public schools, at least not this year. I'm going to bear down and make a schedule for social activities for Bug. We're putting him in Sunday school this year, I'll be teaching his class some weeks and aiding others. We're going to make picture schedules for him so he can better anticipate what we're doing each day. We're making a book of sorts with pictures of places we go so that we can show him and talk about it to help him--and us--be less frustrated and upset. We're going to focus on learning "What's that?" and "What's happening" so we can learn "Where" and eventually "Why" and "How". And we're going to work through frustration together. And I'll do as much learning to support as I can, so that I can be the best damn advocate for my boy.
So other than that heap of negativity up there (above the cuteness that is Bug), what else have we done? Well, Bug got a BIG BOY HAIRCUT with clippers (becuase I did a seriously shoddy job with scissors and had to fix it). Funnily, he did way better with the clipper--granted he also had grapes and Angry Birds on my phone--than he does with scissors, so I do believe we'll be repeating that the next time.
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| Watching fishes at the Three Lake aquarium |
I'm hoping we're through the worst of the tiredness and frustration. Today seemed better, although by 4 he was asking for a nap and we had to turn him down. By the time bedtime rolled around he was overtired and crazy. But I think it's nice that next week we have nowhere we have to be until his IEP meeting on Friday. That is one of the great things about not having him in school, I can cancel therapies (with advance notice) and we can take a mental health week. So hopefully I'll remember my camera and can do an awesome post about all the fun we have! :)
Saturday, August 2, 2014
Mama's Learning
Geesh, the past week I feel like I've been in school again. I finished VCU's course that had good initial information, and now I've completed an Autism Internet Module on PRT--the therapy we want for Bug. It is so wonderful to be able to access so much information online, even if it does take a bit of hunting to find what I need. I still want to complete the course that's offered online through Michigan, so I guess that's up next. And, one of my friends gave me a book filled with learning activities for three year olds, so I've got some good ideas for what I want to do with the kiddos this fall.
We did get more info on the Medicaid waiver and well, we just don't know if we'd qualify or not. We are making some progress with Adam's work, they're looking into covering ABA, so prayers would be MUCH appreciated. It would be such a blessing and a relief for us to be able to just go through insurance and we would have a lot more options than what we do now.
I also got in touch with the clinic at Virginia Tech and it looks like we will be doing PRT training in late October or early November. They're not quite sure how it'll work, I guess they have a lot of interest so it might be a group training. We'll see I guess. The good thing is that we're guaranteed a spot, so we just have to sit tight for a while.
Final Mama note: I'm going to start working to get things a little bit more organized and put up a list of sites, books, etc, that we've found helpful so far. I figure that even if it helps one person out, it would be worth it.
Alright, Bug stuff:
Speech: Bug is working so well with Kathy. They're doing a lot with verbs and talking about what people/things are "doing". I guess Bug's favorite activity is looking at flashcards that have pictures of actions on them. Bug really likes the ones that involve slides and swings, so Kathy saves those for last as a reward for doing the other ones. It's always so cool to hear him say full sentences like "He is swinging" :D
At home, we are having some confusion with "you" versus "I"--Bug will often say "You want ____" when he wants something (because when he says "I want ___" we respond "You want ____"). Pronouns are often tough for ASD kids, so we're working to reinforce the "I" again.
We are also doing a bit of potty training, pretty much on Bug's terms. It seems like in late afternoon, Bug is done with diapers and sometimes even requests undies, so we're giving it a slow go. So far we've had one accidental success and a lot of wet undies. We'll get there. I'm glad at least that he's interested and pretty compliant about heading to the bathroom. We just need to work on him relaxing enough and sitting long enough to be successful. I'm struggling to find rewards or reinforcers that work for him. He does like playing Angry Birds on my phone but it doesn't seem to be a strong enough reward for him. So I guess I have to do some brainstorming.
I've also tried a bit of prewriting with Bug. I filled a cake pan with a little bit of salt and let Bug put his fingers in it. He seems very into exploring it and getting it everywhere, so I've been trying to get him to try doing single strokes. We need some work, but I'm glad that he's interested in it.
I also put together a very mini-sandbox (out of a small under-the-bed tote) and both boys really love playing in the sand. And dumping it all over our driveway. Sillies.
In OT, Bug tried a lot of new things this week! He bounced on an innertube, played with cars on a ramp, rode a scooter and even pedaled a trike a little bit! He didn't do as much swinging as he had been, which was kind of surprising. Once again, he enjoyed the "motorcycle" swing and going down the slide backwards. He does seem to be "done" with OT usually around the half hour to 45 minute mark, and tends to be more resistant towards Geri's activities, but we've been coaching him through. I do have a hard time because I never know exactly how involved I should get, but I always try to praise him and encourage him when he looks towards me.
I'm hoping that we can start incorporating some PRT during our day-to-day activities and slowly start building everybody up to a couple chunks of "work" time each day. For all of us, it'll be an adjustment as we learn new habits and skills. I just have to be persistent and keep trying even if we hit bumps.
We did get more info on the Medicaid waiver and well, we just don't know if we'd qualify or not. We are making some progress with Adam's work, they're looking into covering ABA, so prayers would be MUCH appreciated. It would be such a blessing and a relief for us to be able to just go through insurance and we would have a lot more options than what we do now.
I also got in touch with the clinic at Virginia Tech and it looks like we will be doing PRT training in late October or early November. They're not quite sure how it'll work, I guess they have a lot of interest so it might be a group training. We'll see I guess. The good thing is that we're guaranteed a spot, so we just have to sit tight for a while.
Final Mama note: I'm going to start working to get things a little bit more organized and put up a list of sites, books, etc, that we've found helpful so far. I figure that even if it helps one person out, it would be worth it.
Alright, Bug stuff:
Speech: Bug is working so well with Kathy. They're doing a lot with verbs and talking about what people/things are "doing". I guess Bug's favorite activity is looking at flashcards that have pictures of actions on them. Bug really likes the ones that involve slides and swings, so Kathy saves those for last as a reward for doing the other ones. It's always so cool to hear him say full sentences like "He is swinging" :D
At home, we are having some confusion with "you" versus "I"--Bug will often say "You want ____" when he wants something (because when he says "I want ___" we respond "You want ____"). Pronouns are often tough for ASD kids, so we're working to reinforce the "I" again.
We are also doing a bit of potty training, pretty much on Bug's terms. It seems like in late afternoon, Bug is done with diapers and sometimes even requests undies, so we're giving it a slow go. So far we've had one accidental success and a lot of wet undies. We'll get there. I'm glad at least that he's interested and pretty compliant about heading to the bathroom. We just need to work on him relaxing enough and sitting long enough to be successful. I'm struggling to find rewards or reinforcers that work for him. He does like playing Angry Birds on my phone but it doesn't seem to be a strong enough reward for him. So I guess I have to do some brainstorming.
I've also tried a bit of prewriting with Bug. I filled a cake pan with a little bit of salt and let Bug put his fingers in it. He seems very into exploring it and getting it everywhere, so I've been trying to get him to try doing single strokes. We need some work, but I'm glad that he's interested in it.
In OT, Bug tried a lot of new things this week! He bounced on an innertube, played with cars on a ramp, rode a scooter and even pedaled a trike a little bit! He didn't do as much swinging as he had been, which was kind of surprising. Once again, he enjoyed the "motorcycle" swing and going down the slide backwards. He does seem to be "done" with OT usually around the half hour to 45 minute mark, and tends to be more resistant towards Geri's activities, but we've been coaching him through. I do have a hard time because I never know exactly how involved I should get, but I always try to praise him and encourage him when he looks towards me.
I'm hoping that we can start incorporating some PRT during our day-to-day activities and slowly start building everybody up to a couple chunks of "work" time each day. For all of us, it'll be an adjustment as we learn new habits and skills. I just have to be persistent and keep trying even if we hit bumps.
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| He just cracks me up. So excited about the camera flash! |
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.
Thursday, June 5, 2014
{Mom Rant} I'm Only Going to Say This Once...
So I've debated on this post for a while, but I think I need to address it. I know we are so early in our journey, that maybe I will get worn out, that things could get a lot harder in the coming years...but I need to say this: I would not wish Bug any other way.
Autism is pretty well-known now. There's been a big campaign to raise awareness about it, and with diagnosis rates that seem to be rising, parents now at least have it on their radars. And unless you live under a rock, you're probably aware that there's a lot of controversy about what causes autism and even how to treat it. But the thing I keep seeing that just gets under my skin is that parents are afraid of autism, of having autistic kids. That having an autistic child is just some terrible burden.
I know I'm skewed. The thing about autism is that it's a really wide spectrum, no two kids have the same set of symptoms. Some kids are so severely impacted they can't talk, can't show or accept any affection, and will need lifelong support. Others you might never even know they're on the spectrum. Bug is somewhere in the middle. I don't know if we'll ever have 'normal' communication, but we have a great start and at least can get his wants and needs figured out, usually. He likes hugs and kisses and tickles and the little shows of affection, and sometimes reciprocates, but there is no doubt that I know he loves us. He doesn't seem to have the negative behaviors you often see--meltdowns over changes or violent outbursts, for example. So no doubt, we're blessed in a lot of ways. We of course have struggles, and will have struggles too. I guess what I'm saying is that there are a lot of people who have bigger hurdles and have been going through this longer and maybe that's why they say things like:
I Wish My Kids had Cancer (A Book written by a dad whose two children have autism)
and
God punished Toni Braxton by giving her an autistic child (For having an abortion, apparently. She also apparently said that she no longer feels this way, although that was not in the original article I read about it a few weeks ago)
The first one is really just terrible and the guy has caught a ton of flack from autism groups for presenting an overly negative and "scary" view of autism and parents of children who have or had cancer.
The Toni Braxton thing...well, there's actually a pretty direct passage from the Bible on this:
1As He passed by, He saw a man blind from birth. 2And His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he would be born blind?" 3Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.… (John 9:1-3)
I do understand questioning why God gave me an autistic child. Sometimes it feels like it is my fault, that I did something wrong. I worry sometimes that with the hard pregnancy and not eating well, or having a second, harder pregnancy while Bug was so young and I wasn't able to devote enough time to helping him develop play and verbal skills. Mostly this is irrational. I know that. And I have a few dear friends who are so wonderful about reminding me that God chose me to be Bug's mom for a reason. (Side story: These friends, we're in a Bible study together. And they reminded me of this story from John. That Sunday we went to church and it was the Gospel reading that was preached on. Sometimes God isn't so subtle. :) )
Articles like these really get under my skin. I'm not naive, I know that people say controversial things to generate buzz about and sell their books (and for the record, I've read neither of the above, nor do I intend to). But I just cannot even fathom this. I cannot imagine having that kind of negativity about my child--and how much that would wreak havoc on the child. While Bug may struggle to express emotions or convey that he registers mine, I know that he feels things just as a normal child does. He can tell, at least to an extent, if I'm upset. I remember once, last summer when this was all new, Adam and I were talking constantly about therapies and I was expressing frustration and I looked at Bug, and he just looked sad. I realized that he was hearing a lot of negativity from me about it--and I realized how completely in the wrong I was. I apologized to him, and told him that we weren't mad at him and that he hadn't done anything wrong. Since then I've made it a point not to talk about him as if he wasn't there, and not to rant about our struggles in front of him.
There's a passage in The Reason I Jump, which is written by a teen with autism, where he says that he just wants parents to not give up on their kids. He says that he knew he was not doing what he was "supposed" to and that he felt bad about it. That he didn't want to be a burden. And as a parent, this just breaks my heart, because I can't imagine how rough that must be, for the whole family. I truly hope we never get to that point--that if I get that worn-out and jaded about autism and Bug that I seek help, because I think that's ultimately what would be needed.
I don't believe in sugar-coating things. There are aspects of ASD that completely suck. There are days I cry and swear and just feel angry about this whole mess. I worry a ton. Sometimes I feel helpless and lost. But I tell you this, I can say the exact same thing about Wiggle (who I tend to doubt is autistic) and I bet any parent will say the same: there are some really cruddy aspects of being a parent. Kids make things harder and you worry about screwing them up, or them screwing things up for themselves. That's universal.
And honestly, Bug has taught me to appreciate things so much more fully than I thought possible. We've gone from him saying the first sound a word makes to forming some complete sentences, in the span of about 18-20 months. He's started saying "sad" now when he's upset and I cried because he was accurately describing how he felt (and because when he is sad he is SAD and it's hard for me to not feel horrible with him). When he said Wiggle's name for the first time...when he accomplishes some silly task in therapy...when I hear him say full sentences to the therapists, with minimal prompting...my heart gets so full and so proud of him, he is just so amazing! When the kids squabble over books, I sigh and intervene and then think "Huzzah, this is developmentally appropriate!" Or him asking to walk with me and grabbing my hand, or being happy to see Adam when he comes home from work, or coming up for random snuggles and "ti-kulls".
Bug is not a punishment. He is no more burden than any kid is. I don't wish he was "normal". He is exactly who he is supposed to be and I pray that my heart will always be open to the lessons that God teaches me through being Bug's mother.
Autism is pretty well-known now. There's been a big campaign to raise awareness about it, and with diagnosis rates that seem to be rising, parents now at least have it on their radars. And unless you live under a rock, you're probably aware that there's a lot of controversy about what causes autism and even how to treat it. But the thing I keep seeing that just gets under my skin is that parents are afraid of autism, of having autistic kids. That having an autistic child is just some terrible burden.
I know I'm skewed. The thing about autism is that it's a really wide spectrum, no two kids have the same set of symptoms. Some kids are so severely impacted they can't talk, can't show or accept any affection, and will need lifelong support. Others you might never even know they're on the spectrum. Bug is somewhere in the middle. I don't know if we'll ever have 'normal' communication, but we have a great start and at least can get his wants and needs figured out, usually. He likes hugs and kisses and tickles and the little shows of affection, and sometimes reciprocates, but there is no doubt that I know he loves us. He doesn't seem to have the negative behaviors you often see--meltdowns over changes or violent outbursts, for example. So no doubt, we're blessed in a lot of ways. We of course have struggles, and will have struggles too. I guess what I'm saying is that there are a lot of people who have bigger hurdles and have been going through this longer and maybe that's why they say things like:
I Wish My Kids had Cancer (A Book written by a dad whose two children have autism)
and
God punished Toni Braxton by giving her an autistic child (For having an abortion, apparently. She also apparently said that she no longer feels this way, although that was not in the original article I read about it a few weeks ago)
The first one is really just terrible and the guy has caught a ton of flack from autism groups for presenting an overly negative and "scary" view of autism and parents of children who have or had cancer.
The Toni Braxton thing...well, there's actually a pretty direct passage from the Bible on this:
1As He passed by, He saw a man blind from birth. 2And His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he would be born blind?" 3Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.… (John 9:1-3)
I do understand questioning why God gave me an autistic child. Sometimes it feels like it is my fault, that I did something wrong. I worry sometimes that with the hard pregnancy and not eating well, or having a second, harder pregnancy while Bug was so young and I wasn't able to devote enough time to helping him develop play and verbal skills. Mostly this is irrational. I know that. And I have a few dear friends who are so wonderful about reminding me that God chose me to be Bug's mom for a reason. (Side story: These friends, we're in a Bible study together. And they reminded me of this story from John. That Sunday we went to church and it was the Gospel reading that was preached on. Sometimes God isn't so subtle. :) )
Articles like these really get under my skin. I'm not naive, I know that people say controversial things to generate buzz about and sell their books (and for the record, I've read neither of the above, nor do I intend to). But I just cannot even fathom this. I cannot imagine having that kind of negativity about my child--and how much that would wreak havoc on the child. While Bug may struggle to express emotions or convey that he registers mine, I know that he feels things just as a normal child does. He can tell, at least to an extent, if I'm upset. I remember once, last summer when this was all new, Adam and I were talking constantly about therapies and I was expressing frustration and I looked at Bug, and he just looked sad. I realized that he was hearing a lot of negativity from me about it--and I realized how completely in the wrong I was. I apologized to him, and told him that we weren't mad at him and that he hadn't done anything wrong. Since then I've made it a point not to talk about him as if he wasn't there, and not to rant about our struggles in front of him.
There's a passage in The Reason I Jump, which is written by a teen with autism, where he says that he just wants parents to not give up on their kids. He says that he knew he was not doing what he was "supposed" to and that he felt bad about it. That he didn't want to be a burden. And as a parent, this just breaks my heart, because I can't imagine how rough that must be, for the whole family. I truly hope we never get to that point--that if I get that worn-out and jaded about autism and Bug that I seek help, because I think that's ultimately what would be needed.
I don't believe in sugar-coating things. There are aspects of ASD that completely suck. There are days I cry and swear and just feel angry about this whole mess. I worry a ton. Sometimes I feel helpless and lost. But I tell you this, I can say the exact same thing about Wiggle (who I tend to doubt is autistic) and I bet any parent will say the same: there are some really cruddy aspects of being a parent. Kids make things harder and you worry about screwing them up, or them screwing things up for themselves. That's universal.
And honestly, Bug has taught me to appreciate things so much more fully than I thought possible. We've gone from him saying the first sound a word makes to forming some complete sentences, in the span of about 18-20 months. He's started saying "sad" now when he's upset and I cried because he was accurately describing how he felt (and because when he is sad he is SAD and it's hard for me to not feel horrible with him). When he said Wiggle's name for the first time...when he accomplishes some silly task in therapy...when I hear him say full sentences to the therapists, with minimal prompting...my heart gets so full and so proud of him, he is just so amazing! When the kids squabble over books, I sigh and intervene and then think "Huzzah, this is developmentally appropriate!" Or him asking to walk with me and grabbing my hand, or being happy to see Adam when he comes home from work, or coming up for random snuggles and "ti-kulls".
Bug is not a punishment. He is no more burden than any kid is. I don't wish he was "normal". He is exactly who he is supposed to be and I pray that my heart will always be open to the lessons that God teaches me through being Bug's mother.
Friday, May 30, 2014
Great Week!
Bug has just been on a roll this week!
Speech: Laura has Bug working hard and he is doing a great job meeting her challenges! Today he actually requested a specific book from her. He does this more frequently at home now, but it's good to see he's willing to work with others on it too. They're still working on the difference between "I want" and "I like" but he's at least doing full sentences, which is great.
At home I've been noticing (especially today) how far Bug has come. We hear lots of full sentences and he responds fairly quickly to familiar requests ("Get your shoes." "Can you pick ____ up?" etc). Today he and I were in my bed and he asked for his blanket. I said "Your blanket is in your room." and he climbed down, got it, and came back. This sounds so trivial, but he used to just say "blan, blan" and if we said where it was he'd say "get, get". It is so rewarding to see such strong progress from him!
OT: We had a really good OT session yesterday. Bug immediately went for the tent swing, and cooperated with Geri to get his shoes and socks off before getting in. She initially wanted to only do about 15-20 minutes in the swing, but his "M'Gewi, I...I want swing please" got him a full 30 minutes. She then got him to complete a few small tasks and rewarded him with swinging. Nothing extraordinary, but it was a good start and a good way to show him that he'll get what he wants (swinging) if he does a little work for her. This is basically the same system Laura uses in speech.
We also have done the headphones/listening therapy with him. He seems ok with the concept, but won't keep the headphones on for more than a minute (and that's pushing it). I've been trying different places (driving, at the grocery store) and different activities with him to try and distract him while he's wearing them. The most successful is to do something tactile with him like play with cars or put lotion on him. We've kind of dropped it the last few days so I'll have to pick it back up again.
I've also made some headway with lining up therapy for him. The ABA clinic I contacted called me back and is going to check with our insurance to see if there's a way for us to get at least some of it covered. The out-of-pocket costs are just too high for us--I would need to get a full time job to cover therapy and childcare while I was working, and even then I don't know that would be enough. I did contact a clinic that runs through Virginia Tech too, they do an intensive parent training clinic on ABA techniques. It would be quite a hike, but I'm hoping there would be a way to accommodate us.
I also got a hold of the Early Childhood coordinator to get a child study set up for Bug. This would be the first step in determining what services we could get through the school system and getting an IEP. So at some point this summer we'll have the child study done.
I did talk to our pediatrician and he recommended that we do the genetic testing. The two main benefits for us would be knowing if it's a genetic issue that would potentially affect our other child (or children, at some point, maybe) and also if it's attributed to a syndrome we'd have a better idea of what to expect in the future (future issues that might come up, or how much progress we'd be able to make). I'm not in a huge rush to line up the appointment, but I should probably put in a call.
The other big thing for us: POTTY TRAINING. As the Bug would say "Oh-me smokes" (Holy smokes). I can't believe we're attempting it, but we are. This is a three day weekend for us, so I figured we'd give it a hard push. So far, I'm very please. Bug seems to be ok with (not super thrilled about) wearing underwear, which is a big relief. He was initially COMPLETELY resistant to sitting on the toilet, but I've been able to break it down into smaller steps to ease him into it and that made for fast progress. I'm going to detail this out, mostly if another parent stumbles across it.
We are not using a small potty for two reasons: 1) Bug is really so big I don't think he really fits on a little potty very well and 2) It would add another step/transition that I'd like to just avoid. **Note, if you don't care about the actual process, skip the blue text below**
We're doing a 10 minute cycle--every 10 minutes I take him to the bathroom. It's exhausting, but apparently successful with autistic kids. You praise them if they're dry, reward them if they "go" and sternly tell them that they need to go in the potty if they're wet. So he's great about heading up to the bathroom, turning the light on and getting out of his pants. After that, things broke down almost completely. He wouldn't use the step stool to sit on the toilet. So for a few tries, I had him step on the stool (with help) just in the middle of the floor, not near anything. Then when he felt comfortable with that, I started moving the stool closer and closer to the toilet. Typically it seemed like it took about 2 cycles to get used to each baby step. Then we worked on sitting him on the closed toilet. Then things broke down again when we tried with the lid up. Bug is super uncomfortable about this and really tenses up. I tried to push the issue but he really was bothered so after speech we just laid off. I bought a potty stool off Amazon. We have a little seat that goes over the normal one, but he is not ok with that either.
I figured we'd just give it a rest until we get that thing. I thought the handles would be nice for him to hold onto. So naturally, twice this afternoon he's ASKED to go potty and has sat briefly on the normal seat. :P He is still quite nervous about it and I have to keep my hands around him so I can't show him that he can kind of prop himself up. He seems ok sitting for a while. I put a basket of books and a couple toys in the bathroom for him to look at. He is good about flushing and washing hands, so we've got a solid take on the process at least. We decided that we're going to slow down a bit and take him every half hour just so we can keep the process fresh and make some progress on being ok on a regular seat (seeing as he'll have to go potty at therapy and playgrounds and possibly school). Once we get the potty stool then we'll be more intensive again.
I'm super proud of how well he's handled it so far. No meltdowns, super cooperative for the most part. He understands at least that "potty" means go to the bathroom and sit on the toilet. Hopefully it won't be a stretch to pee and poop. I have a few worries about the actual training part too, but I'm trying not to get too far ahead of myself. First we have to be ok sitting on the toilet.
I am grateful that we've had all the evaluations because it's given me a better idea of what Bug gets hung up on. One of his biggest weaknesses is motor planning: He doesn't always know how to move his body the way it should move. We saw this in OT and I see it regularly at the park: Bug will climb up a ladder to a slide, or an open climber and freeze because he doesn't know how to get his feet out from under him to sit at the top of the slide, or he's at an angle on the climber that he'd be more bear-crawling than climbing and he can't figure out how. It's kind of a coordination thing.
Today in the bathroom, we worked on stepping on the stool not near anything so he could focus on that and get the feel of how to do that. Then we worked on turning around on the stool (ie, stepping up facing the toilet, then turning to face me). Then lowering him onto the toilet seat. It didn't take long at all for him to realize, ok, I can do this, this isn't so different from what I do normally. I've learned that this is what it's going to take sometimes. And it's a little baffling that sitting on a toilet is stressful but kneeling on the couch arm and leaning over a gap to danging his torso in the trampoline is not a big deal at all. :P But it is what it is, and we'll help him figure it out all the same.
Speech: Laura has Bug working hard and he is doing a great job meeting her challenges! Today he actually requested a specific book from her. He does this more frequently at home now, but it's good to see he's willing to work with others on it too. They're still working on the difference between "I want" and "I like" but he's at least doing full sentences, which is great.
At home I've been noticing (especially today) how far Bug has come. We hear lots of full sentences and he responds fairly quickly to familiar requests ("Get your shoes." "Can you pick ____ up?" etc). Today he and I were in my bed and he asked for his blanket. I said "Your blanket is in your room." and he climbed down, got it, and came back. This sounds so trivial, but he used to just say "blan, blan" and if we said where it was he'd say "get, get". It is so rewarding to see such strong progress from him!
OT: We had a really good OT session yesterday. Bug immediately went for the tent swing, and cooperated with Geri to get his shoes and socks off before getting in. She initially wanted to only do about 15-20 minutes in the swing, but his "M'Gewi, I...I want swing please" got him a full 30 minutes. She then got him to complete a few small tasks and rewarded him with swinging. Nothing extraordinary, but it was a good start and a good way to show him that he'll get what he wants (swinging) if he does a little work for her. This is basically the same system Laura uses in speech.
We also have done the headphones/listening therapy with him. He seems ok with the concept, but won't keep the headphones on for more than a minute (and that's pushing it). I've been trying different places (driving, at the grocery store) and different activities with him to try and distract him while he's wearing them. The most successful is to do something tactile with him like play with cars or put lotion on him. We've kind of dropped it the last few days so I'll have to pick it back up again.
I've also made some headway with lining up therapy for him. The ABA clinic I contacted called me back and is going to check with our insurance to see if there's a way for us to get at least some of it covered. The out-of-pocket costs are just too high for us--I would need to get a full time job to cover therapy and childcare while I was working, and even then I don't know that would be enough. I did contact a clinic that runs through Virginia Tech too, they do an intensive parent training clinic on ABA techniques. It would be quite a hike, but I'm hoping there would be a way to accommodate us.
I also got a hold of the Early Childhood coordinator to get a child study set up for Bug. This would be the first step in determining what services we could get through the school system and getting an IEP. So at some point this summer we'll have the child study done.
I did talk to our pediatrician and he recommended that we do the genetic testing. The two main benefits for us would be knowing if it's a genetic issue that would potentially affect our other child (or children, at some point, maybe) and also if it's attributed to a syndrome we'd have a better idea of what to expect in the future (future issues that might come up, or how much progress we'd be able to make). I'm not in a huge rush to line up the appointment, but I should probably put in a call.
The other big thing for us: POTTY TRAINING. As the Bug would say "Oh-me smokes" (Holy smokes). I can't believe we're attempting it, but we are. This is a three day weekend for us, so I figured we'd give it a hard push. So far, I'm very please. Bug seems to be ok with (not super thrilled about) wearing underwear, which is a big relief. He was initially COMPLETELY resistant to sitting on the toilet, but I've been able to break it down into smaller steps to ease him into it and that made for fast progress. I'm going to detail this out, mostly if another parent stumbles across it.
We are not using a small potty for two reasons: 1) Bug is really so big I don't think he really fits on a little potty very well and 2) It would add another step/transition that I'd like to just avoid. **Note, if you don't care about the actual process, skip the blue text below**
We're doing a 10 minute cycle--every 10 minutes I take him to the bathroom. It's exhausting, but apparently successful with autistic kids. You praise them if they're dry, reward them if they "go" and sternly tell them that they need to go in the potty if they're wet. So he's great about heading up to the bathroom, turning the light on and getting out of his pants. After that, things broke down almost completely. He wouldn't use the step stool to sit on the toilet. So for a few tries, I had him step on the stool (with help) just in the middle of the floor, not near anything. Then when he felt comfortable with that, I started moving the stool closer and closer to the toilet. Typically it seemed like it took about 2 cycles to get used to each baby step. Then we worked on sitting him on the closed toilet. Then things broke down again when we tried with the lid up. Bug is super uncomfortable about this and really tenses up. I tried to push the issue but he really was bothered so after speech we just laid off. I bought a potty stool off Amazon. We have a little seat that goes over the normal one, but he is not ok with that either.
I figured we'd just give it a rest until we get that thing. I thought the handles would be nice for him to hold onto. So naturally, twice this afternoon he's ASKED to go potty and has sat briefly on the normal seat. :P He is still quite nervous about it and I have to keep my hands around him so I can't show him that he can kind of prop himself up. He seems ok sitting for a while. I put a basket of books and a couple toys in the bathroom for him to look at. He is good about flushing and washing hands, so we've got a solid take on the process at least. We decided that we're going to slow down a bit and take him every half hour just so we can keep the process fresh and make some progress on being ok on a regular seat (seeing as he'll have to go potty at therapy and playgrounds and possibly school). Once we get the potty stool then we'll be more intensive again.
I'm super proud of how well he's handled it so far. No meltdowns, super cooperative for the most part. He understands at least that "potty" means go to the bathroom and sit on the toilet. Hopefully it won't be a stretch to pee and poop. I have a few worries about the actual training part too, but I'm trying not to get too far ahead of myself. First we have to be ok sitting on the toilet.
I am grateful that we've had all the evaluations because it's given me a better idea of what Bug gets hung up on. One of his biggest weaknesses is motor planning: He doesn't always know how to move his body the way it should move. We saw this in OT and I see it regularly at the park: Bug will climb up a ladder to a slide, or an open climber and freeze because he doesn't know how to get his feet out from under him to sit at the top of the slide, or he's at an angle on the climber that he'd be more bear-crawling than climbing and he can't figure out how. It's kind of a coordination thing.
Today in the bathroom, we worked on stepping on the stool not near anything so he could focus on that and get the feel of how to do that. Then we worked on turning around on the stool (ie, stepping up facing the toilet, then turning to face me). Then lowering him onto the toilet seat. It didn't take long at all for him to realize, ok, I can do this, this isn't so different from what I do normally. I've learned that this is what it's going to take sometimes. And it's a little baffling that sitting on a toilet is stressful but kneeling on the couch arm and leaning over a gap to danging his torso in the trampoline is not a big deal at all. :P But it is what it is, and we'll help him figure it out all the same.
Thursday, May 15, 2014
OT--slow goes
We had OT today. Bug fussed when we pulled into the driveway but was calm and compliant about getting into the office. He didn't want to go in his therapy room, he first ran down to a different room and I had to bring him back. Once inside, he started back up on the cling-to-mom stuff. We tried to give him some time, but eventually Geri encouraged me to keep him from sitting in my lap so he would be more likely to explore the room. He was a little bit better about going around looking at and fiddling with the equipment, but every time Geri would try to enter his space or talk to him, he would run back to me. We did have a smidge of success when he took trains from her, and then in the last 5 minutes, he was OK with her handing him balls to roll down a slide. He then was pushing a swing but when she asked if he wanted to go in, he reverted back to clinging again.
I. Am. So. Frustrated!
Number one, I feel like he's putting us on a bit. Last week he truly did seem anxious, but today I got more of a power-play feeling from him. Or perhaps, he behaved the same because that's what he remembered from last time.
And that's the problem. Geri wants to keep the room the same next week to build comfort and familiarity, but if he's found a rut, changing things up would actually be more beneficial.
Number two, what the heck happened?! He was plain old excited his first session and did great, and now he won't even swing? Which is weird because he typically loves swings and swinging should help calm him down.
I just have no clue. I feel like we're playing a game and I don't know any of the rules and I can't see the board either.
I do recognize that this might be some rebellion against all the therapy and evaluation we've put him through. It's been a long week. We have speech tomorrow, but I think we're going to try for a relaxing weekend. I had hoped to attempt potty training but I think it's better to wait.
Oh Bug. You make us fight for every tiny success. You're worth it though.
I. Am. So. Frustrated!
Number one, I feel like he's putting us on a bit. Last week he truly did seem anxious, but today I got more of a power-play feeling from him. Or perhaps, he behaved the same because that's what he remembered from last time.
And that's the problem. Geri wants to keep the room the same next week to build comfort and familiarity, but if he's found a rut, changing things up would actually be more beneficial.
Number two, what the heck happened?! He was plain old excited his first session and did great, and now he won't even swing? Which is weird because he typically loves swings and swinging should help calm him down.
I just have no clue. I feel like we're playing a game and I don't know any of the rules and I can't see the board either.
I do recognize that this might be some rebellion against all the therapy and evaluation we've put him through. It's been a long week. We have speech tomorrow, but I think we're going to try for a relaxing weekend. I had hoped to attempt potty training but I think it's better to wait.
Oh Bug. You make us fight for every tiny success. You're worth it though.
Wednesday, May 14, 2014
Oh the difference 24 hours makes
God must have heard my prayers yesterday because not long after I blogged, I got a call from Commonwealth Autism Services that they had a last minute clinic cancellation for this morning if we were able to make it. Sometimes, it is so so nice to be stay-at-home. Adam was able to take the morning off so we took the whole gang in. I have to say that I am extremely proud of both boys, Bug handled the evaluations and transitions really well and Wiggle did great for being woken up so we could go.
The first part of the evaluation was an assessment of Bug's social and play skills. It was just Bug, me and the evaluator and I was mostly there as an observer and only offered comfort to Bug as needed. The other specialists and Adam sat behind a one-way mirror. A couple of times the evaluator had me try to interact with Bug, but mostly I stayed out of the way. Bug was not real cooperative with the tasks and wasn't real interested in games suggested. He did enjoy watching bubbles being blown, a little rocket launch toy and surprised me when he helped put "candles" into a playdough "cake". Overall, we felt like he was pretty well represented with the activities.
After that assessment, he went with a speech therapist and an occupational therapist into their "sensory" room while Adam and I were interviewed by the clinical psychologist. Basically a lot of questions about whether Bug does certain behaviors and such. This part is always hard for me because there is so much that Bug doesn't do that developmentally, he should.
Once we finished our interview, we met with the whole team to discuss how things went and where we should go from here. It was A LOT of info to digest (especially while trying to keep two littles happy) but we'll get a report from them in a month or so.
We got to hear from the ST and OT about his evaluation with them. They said that initially he was really really uncomfortable and has a lot of anxiety when he's not with us in an unfamiliar place with unfamiliar people. They quickly realized that they weren't going to be able to work with him together, so they did one-on-one while the other observed. Verbally, Bug has a lot of the building blocks he needs, but he mostly relies on reciting phrases he has learned "I want ____" etc. or using nouns. The ST noted that he enjoys sing-song and rhythmic talking and that he seems to "read" stories using his jargon with a few real words intermingled. One thing she said that I had to laugh at was about knowing how hard to push him without going too far. Didn't I just say that yesterday? She said one of the biggest things is meeting him where he's at, pushing a little but stopping once you have success. He is intelligent and once you show him (model) what you want, he will do it, so you leave him alone. The OT noted Bug's anxiety levels were pretty high, although he kept himself together with no tantrums (big progress on this!). She said that anyone who works with Bug needs to respect his anxiety and give him a little bit of time to adjust to the environment rather than trying to pull him to task right away. Agreeing with how Geri evaluated Bug and our notes, she says he's a high arousal kid. He is constantly moving and really enjoys tactile stimulation (like touching, hugs, etc) She said that they had some good success when she put on some "zen" type music, had him swing for a bit and then he was able to sit for tasks better. She said that he couldn't handle a long time in the swing but would keep coming back to it.
Ultimately, the team agrees that Bug has a lot of the typical autism signs, although not really any of the negative (behavioral) symptoms (mostly the anxiety). They suggested that we look into Applied Behavior Analysis (ABA) therapy and that would really help bring the social abilities up. They also really encouraged us to get the ball rolling to get into the public school system. They said that there are a lot of options for us even if we don't want him in a classroom. Developing and maintaining an IEP for him would allow us to access services as we felt we needed them. We are a little bit more nervous about this aspect, just from all the stories we've heard from friends and such, but they sound super supportive about making sure we know what we're doing and helping us through the process. Unfortunately, I can't say a whole lot else about the "bottom line" stuff until I have the report.
I'm glad the evaluation is done and that Bug didn't seem too bothered by it. Personally (and this is all still very fresh, as we just got back 4 hours ago) I have A LOT of emotions about it, kind of all over the board. It is always gratifying to have others note the issues we notice and offer suggestions for support. I'm not surprised being told that he is on the autism spectrum. I'm a little sad, because I know that this is a lifelong thing, he's not really going to snap out of it--but I do have full confidence that we can make a lot of headway. I feel lost too, because now we have to make all kind of decisions about therapy and schools. We have a ton to learn. I need to learn how to encourage him and teach him in ways that work for him. To some extent, I feel like I need a crash course in OT/speech/teaching techniques so I know what the heck I'm doing with him. I'm freaked out by the prospect of putting him in school and into such a structured environment because I really don't feel like little kids belong in super structured environments. And then I feel guilty because everyone else seems to disagree with me on that. I'm not trying to be pessimistic, because I'm not really. I love Bug so much and I promised him and myself that I will always always fight for him. He forgives me for making mistakes, probably more quickly than I forgive myself. I guess we just have a steep climb of learning ahead of us.
Thank you to those who said prayers for us and thought of us today. We would really appreciate continued prayers as we learn to accept our diagnosis and plan for therapy and education for Bug and for the family. <3
The first part of the evaluation was an assessment of Bug's social and play skills. It was just Bug, me and the evaluator and I was mostly there as an observer and only offered comfort to Bug as needed. The other specialists and Adam sat behind a one-way mirror. A couple of times the evaluator had me try to interact with Bug, but mostly I stayed out of the way. Bug was not real cooperative with the tasks and wasn't real interested in games suggested. He did enjoy watching bubbles being blown, a little rocket launch toy and surprised me when he helped put "candles" into a playdough "cake". Overall, we felt like he was pretty well represented with the activities.
After that assessment, he went with a speech therapist and an occupational therapist into their "sensory" room while Adam and I were interviewed by the clinical psychologist. Basically a lot of questions about whether Bug does certain behaviors and such. This part is always hard for me because there is so much that Bug doesn't do that developmentally, he should.
Once we finished our interview, we met with the whole team to discuss how things went and where we should go from here. It was A LOT of info to digest (especially while trying to keep two littles happy) but we'll get a report from them in a month or so.
We got to hear from the ST and OT about his evaluation with them. They said that initially he was really really uncomfortable and has a lot of anxiety when he's not with us in an unfamiliar place with unfamiliar people. They quickly realized that they weren't going to be able to work with him together, so they did one-on-one while the other observed. Verbally, Bug has a lot of the building blocks he needs, but he mostly relies on reciting phrases he has learned "I want ____" etc. or using nouns. The ST noted that he enjoys sing-song and rhythmic talking and that he seems to "read" stories using his jargon with a few real words intermingled. One thing she said that I had to laugh at was about knowing how hard to push him without going too far. Didn't I just say that yesterday? She said one of the biggest things is meeting him where he's at, pushing a little but stopping once you have success. He is intelligent and once you show him (model) what you want, he will do it, so you leave him alone. The OT noted Bug's anxiety levels were pretty high, although he kept himself together with no tantrums (big progress on this!). She said that anyone who works with Bug needs to respect his anxiety and give him a little bit of time to adjust to the environment rather than trying to pull him to task right away. Agreeing with how Geri evaluated Bug and our notes, she says he's a high arousal kid. He is constantly moving and really enjoys tactile stimulation (like touching, hugs, etc) She said that they had some good success when she put on some "zen" type music, had him swing for a bit and then he was able to sit for tasks better. She said that he couldn't handle a long time in the swing but would keep coming back to it.
Ultimately, the team agrees that Bug has a lot of the typical autism signs, although not really any of the negative (behavioral) symptoms (mostly the anxiety). They suggested that we look into Applied Behavior Analysis (ABA) therapy and that would really help bring the social abilities up. They also really encouraged us to get the ball rolling to get into the public school system. They said that there are a lot of options for us even if we don't want him in a classroom. Developing and maintaining an IEP for him would allow us to access services as we felt we needed them. We are a little bit more nervous about this aspect, just from all the stories we've heard from friends and such, but they sound super supportive about making sure we know what we're doing and helping us through the process. Unfortunately, I can't say a whole lot else about the "bottom line" stuff until I have the report.
I'm glad the evaluation is done and that Bug didn't seem too bothered by it. Personally (and this is all still very fresh, as we just got back 4 hours ago) I have A LOT of emotions about it, kind of all over the board. It is always gratifying to have others note the issues we notice and offer suggestions for support. I'm not surprised being told that he is on the autism spectrum. I'm a little sad, because I know that this is a lifelong thing, he's not really going to snap out of it--but I do have full confidence that we can make a lot of headway. I feel lost too, because now we have to make all kind of decisions about therapy and schools. We have a ton to learn. I need to learn how to encourage him and teach him in ways that work for him. To some extent, I feel like I need a crash course in OT/speech/teaching techniques so I know what the heck I'm doing with him. I'm freaked out by the prospect of putting him in school and into such a structured environment because I really don't feel like little kids belong in super structured environments. And then I feel guilty because everyone else seems to disagree with me on that. I'm not trying to be pessimistic, because I'm not really. I love Bug so much and I promised him and myself that I will always always fight for him. He forgives me for making mistakes, probably more quickly than I forgive myself. I guess we just have a steep climb of learning ahead of us.
Thank you to those who said prayers for us and thought of us today. We would really appreciate continued prayers as we learn to accept our diagnosis and plan for therapy and education for Bug and for the family. <3
Tuesday, April 29, 2014
Autism Awareness Month--A Mother's Plea
So I haven't said much about it, but April is Autism Awareness Month. I've seen loads of news stories and puff pieces about autism this month. I've also (rather coincidentally) been reading books by people on the spectrum and finding blogs to follow. I feel a little awkward about the whole thing because we don't know if Bug is autistic or not. But the last few articles I've read having hit on a point I think I should talk about a bit.
Autism spectrum disorder is a really, really broad spectrum disorder. Some kids can hardly function on their own, are non-verbal and struggle with the most basic interactions. Other kids are highly verbal (even advanced) and might just seem quirky or "weird". Every single child has a different set of symptoms and triggers and sensory issues. Because of this range, it can be really difficult to spot an autistic child. And sadly, a lot of people don't know about or acknowledge autism as a real disorder. They say kids are just hyper or rude or shy or oblivious or naughty or a host of other negative things.
So here's my request: When you see a kid doing something "naughty" or who seems out of control or what have you, before you judge that kid, before you judge his parents, stop. Think about it. That kid could have a ton of issues that you know absolutely nothing about. He could be screaming on the floor because the lights are overstimulating and he can't tell you because he can't make the words come out. Or it could smell awful to him. Or maybe something stressful happened there. The kid bouncing up and down excitedly isn't necessarily just hyper. He could be jumping because the sensory input into his joint is stronger if he jumps. The kid who has to touch every. single. thing. might just need that extra stimulation.
We, as parents, know. We know how our kids look, how they make noises that are out of place. And quite frankly, we see the looks they get and we get. But we also know that we still have to get to Target and it's our job as parents to teach our kids to function and behave appropriately in public.
So instead of gaping, or giving a stern look or a stare or whatever, maybe give a kind smile and move on. And if you've got kids, encourage them to be kind. It's ok for them to ask questions. I can explain to people why he jumps or flaps or finds it hard to talk. I know it's hard to be friends with someone who doesn't know how to show that he likes you or even notices you, but they deserve and WANT friends too. Everyone has weird traits, and everyone has amazing talents. Let's all just try to appreciate our uniqueness a little bit more. Ok? Ok. :)
Here's a couple of links to books and articles I've read lately:
Be Different by John Elder Robison
My Clones in Action
Busting Autism myths with a camera
Will post again later this week, after our first OT session! Can't wait! <3
Autism spectrum disorder is a really, really broad spectrum disorder. Some kids can hardly function on their own, are non-verbal and struggle with the most basic interactions. Other kids are highly verbal (even advanced) and might just seem quirky or "weird". Every single child has a different set of symptoms and triggers and sensory issues. Because of this range, it can be really difficult to spot an autistic child. And sadly, a lot of people don't know about or acknowledge autism as a real disorder. They say kids are just hyper or rude or shy or oblivious or naughty or a host of other negative things.
So here's my request: When you see a kid doing something "naughty" or who seems out of control or what have you, before you judge that kid, before you judge his parents, stop. Think about it. That kid could have a ton of issues that you know absolutely nothing about. He could be screaming on the floor because the lights are overstimulating and he can't tell you because he can't make the words come out. Or it could smell awful to him. Or maybe something stressful happened there. The kid bouncing up and down excitedly isn't necessarily just hyper. He could be jumping because the sensory input into his joint is stronger if he jumps. The kid who has to touch every. single. thing. might just need that extra stimulation.
We, as parents, know. We know how our kids look, how they make noises that are out of place. And quite frankly, we see the looks they get and we get. But we also know that we still have to get to Target and it's our job as parents to teach our kids to function and behave appropriately in public.
So instead of gaping, or giving a stern look or a stare or whatever, maybe give a kind smile and move on. And if you've got kids, encourage them to be kind. It's ok for them to ask questions. I can explain to people why he jumps or flaps or finds it hard to talk. I know it's hard to be friends with someone who doesn't know how to show that he likes you or even notices you, but they deserve and WANT friends too. Everyone has weird traits, and everyone has amazing talents. Let's all just try to appreciate our uniqueness a little bit more. Ok? Ok. :)
Here's a couple of links to books and articles I've read lately:
Be Different by John Elder Robison
My Clones in Action
Busting Autism myths with a camera
Will post again later this week, after our first OT session! Can't wait! <3
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