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.

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.

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!

Watching fishes at the Three Lake aquarium

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! :)

Big Boy Bug!

 The funny thing about having kids is that you know they're growing, but you don't really notice until all of the sudden it smacks you in the face. Bug's progress can be like that too. Sometimes I'll look back at old pictures or videos and just feel amazed at how far we've come. For as many struggles as we have, Bug is making amazing progress. Even last summer, Bug's communication was limited to typically single words or very short phrases. Many multi-syllable words came out only as one syllable and we had to teach him how to do each syllable. Banana was "nay"...which doesn't even really make sense. Now, he can say banana, although he tends to slow down for long words, so it's maybe not fluid, it is completely understandable.

And the great thing about his speech clearing up is that he's learned to be more persistent and try harder to get us to understand him. As he grows, his ideas grow and it's our job to help him get his language up to speed too. Unfortunately, sometimes we lose it a bit, and we go through a frustration period.

Last week, he kept asking for "cohver" and I couldn't figure it out. "Cover? Critter? Kroger?" So we went to Kroger. And he threw a fit and wouldn't get out of the car. So then I guessed "You want the other Kroger?" and he repeated it, so I drove to the other Kroger. And wouldn't you know, that was what he wanted. We think because they have more truck carts. But it's all speculation and guesswork.

All day, Bug has told me "dress". I think he means dressed. As in, get dressed. But he is dressed. I am dressed. Wiggle is dressed. I asked him if he wanted to go somewhere. "Where do you want to go?" "Go dress" and I have no clue what that's supposed to mean. I know that a lot of times he'll ask for a carride early in the day and we'll say "Well, we're not dressed" or "We have to get dressed first"--but we are dressed. So I don't know. Is "dress" a place to him. Did we say it and it became a name for some specific place? Days like this, I wish I could see the pictures in his mind, so I knew, so I could give him words. We're working to teach him to ask "What's that" which would help, but it is all so slow.

We also worked through a tantrum today because he wanted a Duplo car and plane from a book--he told me the book was "stuck" and again, plain guessing on my part, I built him the car and plane and he was happy. Then he got frustrated because they didn't fit inside of his Little People semi. He got mad and I asked him to talk to me about it. He said "Car in truck" which was really good. I told him they don't fit, the car was too big--spacial issues still really thwart Bug. I built him a semi out of Duplos, but I guess it wasn't good enough. Poor guy.

We did get a bit of prewriting in today! I wrote his name in highlighter and gave him a pen to trace. He wanted to scribble, but I put my hand over his so he could try doing lines. We did two out of three letters in his name, not too bad!

OT last week went very well again! Bug dominated the ABC train puzzle that he did the week previous--he only needed help on one or two pieces at the beginning. It is so amazing to see, but it's the PERFECT example of how PRT works. We want him to do fine motor tasks, like jigsaw puzzles. So we give him one with preferred objects (letters and animals). He is so interested in it (he actually picked it out on his own to do) that it doesn't seem like work to do it. We get to talk about the letters and animals and watch as it gets longer and longer. And the whole time he is enjoying it. Super neat.

Geri also said that he's met all his goals so she made new ones for him! It's so rewarding to see him go through OT. His motor planning is really clearing up and it's making him more adventurous at the playground.

I also think that as he becomes less concerned with how to physically do things, he can pay more attention to other kids. Last week we went to Chick-fil-A and I let the boys play after eating. Bug wouldn't  climb very high up a tower, which he needed to do to get to the slide. Two older boys came in and we watched (and I narrated) as they went up the tower and through the tubes to the slide. Sure enough, after watching them a couple of times, he tried it himself! It really stressed to me that he needs to have opportunities to watch other kids and play with other kids. He does seem a bit uncomfortable sometimes, but he's showing a lot more interest and seems receptive to some interaction from them. 

Cuteness break. We are doing so much reading with both the boys. They still power struggle a bit, but a lot of times we'll have both of them snuggled up to us for a book. Love it!

Potty training is just not there yet. Bug will not "go" on the potty. Not sure what the breakdown is so we're taking a step back for a while (he still goes in undies if he asks, but I need to rethink our plan of attack). That being said, the little stinker keeps taking his diaper off in the middle of the night and it's creating a heap of laundry and starting the day off more stressful than we'd like. :P

This week is a weird therapy week. We didn't go to speech yesterday, but will go on Friday instead. We'll see what we learn this week!

Minimalist Recap of Last week

Speech keeps going well. Bug is sticking with Kathy for the fall. She wants to bring in another therapist to work with him for a day, to see how well he's generalizing what he's learning (ie, can he still communicate with someone new?)

OT went so fabulously well! Bug pedaled on the tricycle FOR THE FIRST TIME EVER!!!, pushed himself on the scooter, did a scooterboard and rocked it. He also did an alphabet train jigsaw puzzle and by the end was putting the pieces together correctly without assistance. Best of all, NO fussing! Yay!!! Was an amazingly good session. :D

Home stuff has involved lots of the same. We're still working on conquering potty training. We've gotten him to sit for up to 30 seconds at a time, but he still won't go. It seems like he will come back downstairs and wait for us to not pay attention and then pee somewhere. So our next attempt will be leaving the bathroom so he can have some privacy. I forsee lots of peeing on the floor in the bathroom.

Bug has been quite engaged with us with reading, which is always fun. He and Wiggle seem to be undergoing a very developmentally appropriate power struggle: taking books away from me, so I can read a different one, or taking things from each other, or being displeased that the other brother is playing with some noise-making thing. Tiring, but appropriate. I'm hoping that we can start getting them to interact more positively and work on cooperative play with both of them.

That's last week wrapped up. I'm working on overhauling our schedule board and starting to think of ideas/themes to focus on for devoted PRT time with Bug. So busy. As usual.

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.

He just cracks me up. So excited about the camera flash!