Catching up!

Massively behind on the blog. Things have been going pretty smoothly, but have been very busy.

School: We're currently on winter break, and missed last week due to sickness, but school has been going fairly well. Bug is excited to ride the bus and so it is easy at least to get him ready to go. Last I checked in with his teacher, there were still the behavioral concerns. She also mentioned trying a weighted vest for him to help him focus during circle and fine motor time.

I have definitely seen an improvement in his willingness to color and help with projects, so we're definitely seeing benefits. His IEP is due to be re-evaluated, so it'll be interesting to see where they set his goals.

Speech: We went through a bit of a rough patch with Laura. I think things were a little too rigid for Bug's liking and he wasn't too happy about it. Laura changed tactics and has been doing less structured activities as well as using a timer to visually show Bug when transitions are coming. We're still working to get him to understand that he'll get a "reward" activity after completing a "work" activity. He's not quite there yet. We are making good progress with "yes" again--we had backslid a little. And Bug is doing a great job expanding "I want _____" to "I want to eat/drink/look at/etc _____". He still needs prompting a lot of the times, but he's getting the hang of it. I know he's working hard for us!

OT: Especially with the weather being less enjoyable, OT has been a very important part of our week. Eli is doing wonderfully with Frances, and I'm super impressed with her too. She's been very helpfully giving me ideas to do at home, and activities with Wiggle, and suggested a really great book, "Raising a Sensory Smart Child", to read as well. She's been working on a lot of fine motor skills with Bug, like cutting and coloring. We've also had a lot of success playing with him in the ball pit and barrel swing. She's also been very receptive to pushing him speechwise, encouraging him to say "Yes" and ask for things using full sentences. I am so grateful for OT.

Home has been an interesting mix of hard and fun. The hard part is that we're a lot more cooped up than any of us want. We are getting a playset (ASAP!!) for the kids (THANKS TO FAMILY FOR MAKING THAT GOAL A REALITY!!) but for now we're doing a lot of roughhousing (both boys love to be flipped upside down) and bouncing. Auntie Amy got the boys a bouncy cow for Christmas, and Bug is so excited!

Cow goes where Bug goes

I've also been doing a lot more tactile activities with the boys (Wiggle seems to struggle a lot, and it's good for Bug too). Messy, but fun.

Painting with balloons

Daddy dropping beans on Bug's head

Playing in flour--MESSY!

Paint bubbles

One of the coolest things that we did, that Bug actually initiated, was finding and circling letters on a sheet. Does look like much, but Bug was finding the letters on his own and circling them unassisted. It was extremely rewarding to see!

We've been working on getting more videos for PRT, but things have been very busy, and it seems like a lot of times we're playing/working with Bug and things evolve without the camera rolling. Hopefully we can finish them soon so we can do another session.

Well, that's about it for Bug. Lots of great progress. I am just so proud of him!

Life in the fast lane

Well, I knew we were busy, but I hadn't realized that I hadn't posted in over 3 weeks. Our weeks have been extremely full and a lot happened, but I think we're finally coming out the other side.

School: Bug has now has a few weeks of school under his belt. This week he only went one day because he was sick, but I think he's gone a total of 8 or so days. On the surface, it seems things are going pretty well. He enjoys riding the bus (even telling me that that's what he did at school when I asked) to and from school. I love seeing what he brings home and it gives me a small opportunity to try to talk about his day. We do get weekly newsletters, but it's still hard to know what they do on a daily basis.

We had a parent-teacher conference last week and his teacher did mention some behavioral concerns to us. Apparently Bug lashes out physically and with verbal protests a lot during the day. While we might expect this at first, and at transitions, she said that he does it even when he's heading to a desired activity and throughout the activity. I've also noticed a resistance at OT and speech, as well as getting on the bus,  that hasn't been there previously. We're not really sure what his reasoning is. I think it could just be a (not good) routine he's gotten himself into, or it could be a protest. We're not really sure how to handle it. So it'll have to be monitored closely to see if we can find effective strategies. It's particularly hard for me because I can't see what happens.

Speech:  Bug has pretty successfully transitioned back to working with Laura. Lately he has been asking me to go back in the room with him, which if I don't have Wiggle, I do. It's like he just needs to know I'm there. One huge speech thing (that didn't occur in speech actually) is that he can now ask, appropriately and unprompted "Where is it?"!!! I've heard him now in several different situations and places. :D Bug's first question! We've also been very focused on re-establishing "yes" as the answer to a question.

Our PRT session was very speech oriented too. We got a lot of good feedback and a lot of things to work on. One of the biggest things was that Adam and I ask a lot of questions rhetorically. Instead, we should try to only ask questions when we require a response--and stick to it to get the response. Courtney, our trainer, also suggested that rather than trying to set up situations for Bug, that we allow Bug to float around and then just try to insert ourselves into whatever he's doing. While this makes sense to me, my hang up is that much of what Bug does isn't really focused or "play". It's hard to insert yourself into the running, flapping, etc. that occupies a lot of his day. That being said, there are always opportunities, and it's up to us to capitalize on them!

OT: The biggie. We received word this weekend that our OT, Geri, passed away unexpectedly. We had just seen her on Thursday, so it came to a huge shock to us. I really debated on how to bring up death to Bug, but after talking to a friend, I opted just to tell him that Geri isn't there anymore. Any time he asks for her, I remind him and then say that we're going to see Frances instead. We had our first session with her and Jenna (the supervising OT) today and it went extremely well. Bug was calm about Frances leading the session and even requested that she play trains with him in the waiting room and he also tried going through the barrel into the ball pit. Jenna suggested that Bug may not have liked the ballpit previously because if he was wearing shorts and short sleeves, it would be kind of cold. She also suggested some different ways to get deep pressure to Bug.

I am so sad that Geri is gone, we have lost such a wonderful resource and guide. But I'm grateful for the groundwork she laid for us and that we can stay at the office we're at to continue on. If we can't have Geri, I think her co-workers are the next best thing!

I'm still working to find a good balance in the day for us all. I would still like to get Bug into some activities with his "neurotypical" peers. Especially as the days get colder and shorter, it's difficult for us to get out to parks, so we'll definitely have to figure out some way to supplement.

A New Routine

Whew, it's been a long time between updates. Honestly, it has been a very tough month for all of us, and we've made a lot of changes.

We are still struggling a little to get Bug out of the car. He still asks to "get dressed" and we cannot figure out what he's talking about. Luckily, he doesn't seem to get as distressed as he used to (although he still has his moments). We have had an easier time getting him out of the car. Typically if we say that we have to go really really fast and run, he's more cooperative. I also feel like he's more aware of the actual places we go. He has correctly pointed out Lowe's to me as we were driving past and he has used his book of pictures to show me where he wanted to go. We also make sure to tell him the name of where we are.

About a month ago, I started spending a few minutes with Bug before bed, so I could talk about our day with him. I ask him what his favorite thing we did was, give him a chance to answer and then sometimes say what I think it was (a lot of times it's pretty obvious). Then I tell him what my favorite part of the day was and then we say a little prayer together. It's fun because a lot of times he'll get a little smile on his face when I talk about what we did. Then this weekend, he actually told me! "Library. Look at movies" It was pretty neat to hear him answer a question with a non-scripted, completely novel response.

Sunday school has not really been a productive time. While I'm grateful for the exposure to his peers, he doesn't currently pay any attention and mostly does what he can to avoid doing anything. I'm hoping that being in preschool will help him out.

Speaking of preschool, Bug FINALLY started the early childhood program last week!

It was quite the adventure finding a program for him. We opted not to do the initial program we looked at because it started so early. Bug already struggles with sleeping at night and I was really against the idea of waking him up early every morning to get him to school. We looked at a couple of preschools, one of which we felt pretty good about, but after a couple of visits (and a lot of miscommunication), they felt that they didn't have training to help him make the most of his time. They said they'd only take him for 2 days a week but strongly recommended we enroll him in an early childhood program instead. Around the same time, the Early Childhood coordinator called me and told me about a class that started later, which after meeting with the teacher, we decided would be the best fit. It was a long, stressful and kind of disheartening process, but we feel good about the class he's in. Because he's with other special needs kids, we are also looking into other afternoon activities that would allow him to interact with his regularly developing peers.

So far we've had two days of school and it seems like he's doing ok. Today it was hard to get him out of the car, but the aide said that once he was in the building and calm, he was fine. I think it'll be a good thing, even if he needs to get his little protest out of the way.

Speech: We have had a lot of upheaval in speech. Kathy went on vacation a couple of times, and we took time off and I feel like it's been forever since we have had a consistent schedule. We are switching back to Laura on Tuesday and Friday afternoons. Hopefully he handles the change well. We did see a different therapist two weeks ago and he did pretty well. It was funny because Bug started 15 minutes later than he normally had been, and he knew it. We'd have normally finished at 11:30, but were scheduled until 11:45. Right at 11:25, he asked JoAnn to come get me--which is what he always did with Kathy. It was kind of amazing actually! :)

OT: OT has been our consistent and our bright spot. Geri has a student with her this semester, Frances. Eli insists on Geri doing his swinging, but other than that seems pretty comfortable with Frances. We've been working a lot on puzzles and he's getting quite good at them, and even seems to enjoy them at home. I found a pack of small, 4-9 piece puzzles, that he can do a couple of them. With help, he can even do a 24 piece floor puzzle.

Bug is also doing very well on the trike at OT, even with steering and turning around corners. At home, he is less interested, but I was able to get him to pedal a little on his trike this weekend.

Also, I realized that I never thanked you all for the support with the Autism Speaks walk! We had lots of fun.

The next few weeks are going to be very full. We have our first full week of school this week, plus our new therapy schedule and finally a PRT training session too. Please say some prayers for us that things continue to go smoothly and that we all keep our energy up! Hopefully now that I at least know what we're doing each day, I can focus on blogging again!

A really, really good day!

So I don't normally post back to back days, but I really needed to log today, because it was fabulous! We had ZERO tantrums. Now, granted, today was an "off" day--no therapies, no set agenda--but still.

Here's what we did:

{Backstory: For the last month or so, Bug keeps asking to "go dressed". Or if you say "Let's get dressed" he'll get his shoes on. We've tried explaining that getting dressed means putting on clothes, but it hasn't clicked. Sometimes when we're on the highway, he'll ask to "go dressed" and then get really upset when we exit for home or wherever. Our best guess is that on the day we took him to see all the tractors at a John Deere Store, we told him we had to go get dressed first and he assigned the store the name "dressed"...I know it's a little crazy, but we've been everywhere else and it keeps coming up and it makes at least some sense to me. He's been on it for a month and it's been a month since we were there. Coincidentally, we've been having behavioral problems for a month.}

This morning, I asked Bug if he wanted to get dressed, he ran to get his shoes and I said that we had to put new clothes on and then I would take him where I thought "dressed" was. So I drove him out to the tractor store. He was calm pretty much the whole way, so I *think* (and really freakin' hope) I was right. We didn't get out, but I explained that we couldn't climb on the tractors today because that was just a special thing (Like when we saw goats at the mall). He seemed ok with the explanation (quiet, no crying) and when I asked if he wanted to go to the park, he said please and we left without issue. We played at the park with no issues.

Adam and I had talked last night about how we could break the routine of fighting getting out of the car. We figured that the PRT method would probably be having a motivating reward ready for him that he can take once he's out of the car. Since Bug almost always brings a book or a toy with him to hold, I decided that I'd take it once he was buckled and explain that he could have it once we got out of the car. He wasn't happy at first, but seemed ok with it and both times got out of the car without a fuss when I said he could have the reward. We'll try it again tomorrow at speech, I'm hoping that it's a strong enough motivator that we can at least get him into the building without a fight.

This afternoon was wild, but a heap of fun. Yesterday I had tried filling a tub with soapy water for Bug to play with and it flopped. He "took a bath". Today I made bubble solution and we went out and played with that and the remnants from yesterday. It made a gigantic mess:

He had so much fun. And what I thought was really interesting was that he was giving me a lot of spontaneous verbalizations. He told me "taking a bath" "getting all wet" and "spill" when he dumped out the tub. He also came inside and helped me fill a bucket with more water to play with, asked me to blow bubbles and popped them with his nose. While it wasn't a lot of back and forth, he was a lot more engaged than I've seen him lately. Afterwards I had to rinse him off in our shower because he was a sticky, soapy mess (the solution had sugar in it). He thought that was absolutely hysterical and was just laughing like crazy. :D

Then a bit later he asked for the red paint and took the initiative to get all the paint out. I asked him if he wanted paper and he said please so I put out paper. Then he tried to put paint on the paper himself! With help we got three globs down, he put his fingers in it. I brought him a paint brush and quicker than quicker he did this:

So wonderful! I love that he's willing to use a brush (I'm totally ok with him not liking it on his hands, that's reasonable) AND that this was entirely self-directed. It only lasted a few minutes (during which I was distracted with something else so I wasn't able to work with him at all) but wow, I was so impressed!

The rest of the day went smoothly too. We tried undies (unsuccessfully but at least we tried) and he sat for a good amount of time at dinner too.

Hopefully we can start building momentum and reinforcing good habits and routines instead of bad ones. I'm really hoping that seeing the tractor store will calm him down a bit about going places, but I do think that I'm going to try to substitute "get dressed" for "change clothes" or something of that nature to try to avoid confusion.

Bumps now, big changes ahead!

So much to talk about!

A couple posts ago I talked about the IEP evaluation and how horrid it went. And I said "We're not taking services." And then last week, I started having a change of heart, that maybe it wouldn't be terrible if we enrolled Bug in school. Then on Friday I went to the meeting to actually write up the IEP, and I ended up being surprised by how reasonable the IEP was. Basically, they suggested that we do Early Childhood 5 times a week for half days. I said that was too much to start, but I'd be comfortable with 3 days and they said that was reasonable. The goals were very realistic and I felt like they were good next steps for us. So I said that I wanted to think about it and talk it over with Adam over the weekend. Adam and I talked a lot this weekend, and prayed about what to do. It seemed like every good point had an equally good counterpoint. But by yesterday, I realized that a lot of my "nopes" didn't have super strong reasons--or were fears that every parent has when they first put their children into preschool. So I guess what I'm saying is that we've decided that we're going to accept services. Starting at the end of the month, Bug will be attending a nearby school 3 days a week. We'll still continue our speech and OT privately, and I feel like I still have plenty of time to work with him at home, and he'll still have lots and lots of time to spend with his neurotypical peers. AND, if we feel like it's a poor fit, we can take him back out or make changes to the IEP. We know that it's not the absolutely best fit, but it's at least a step in the right direction and we feel good about that.

Bug had his first Sunday School class this weekend! We had a little trouble getting in, and a lot of trouble paying attention, but we got through it and it was not a bad start. We also spent a little time in the church service, which was harder for him. From what I can tell, it's a little overstimulating for him. But again, it was at least a start and I think that if we can make it a consistent routine, we'll end up being very successful.

Another good thing: We finally have a plan for the PRT training I've been trying to line up forever! Unfortunately, the Virginia Tech thing didn't pan out, but we are able to do online sessions with the Koegel Center and are currently working on making videos for them to evaluate. I'm excited to finally get some feedback from someone who's trained so we can start incorporating PRT into our lives and our therapies.

Bug also used a paintbrush for the first time this weekend! He actually asked for paint and was fairly interested in it!

We are still having such major struggles with going places, especially to speech. Bug gets so frustrated and upset if we don't go where he wants. The visual schedule helps a little, in that he can see where we're headed, but he gets really upset if we don't go to the right place or if we're doing a nonpreferred activity. Today at speech was seriously awful and it just breaks my heart. Bug didn't want to leave the house, but then in the car was ok and he was laughing up until I made him get out of the car. Then it was an epic tantrum that lasted the entire session plus. Hitting, screaming, crying, the whole bit. Kathy and I feel like it's more of a control thing or a new routine than separation anxiety, but it's so hard to tell. He would actually behave worse if she praised his good behavior. It was definitely the hardest therapy session we've been in. Hands down.

The next couple of weeks are going to be a bit of limbo. I've kind of resigned myself to just taking it day by day and powering through. I'm hoping that once school starts for Bug that I'll be able to focus on him better and hopefully we can power through some of these behavioral and emotional issues we're having. We could definitely use a break!

Walk for Autism Speaks

A bit of self-promotion here. We found out about a charity walk for Autism Speaks coming up in a couple of weeks and decided to participate!

I know a lot of times people don't like donating to big charities because of the "where does the money go factor" so I thought I'd talk a little bit about why we're participating and asking for donations. I always think it's wise to know what you're donating to and of course, encourage you to do your own research as well. Anyway.

Autism Speaks is probably the best-known autism foundation. They are probably one of the best resources out there, certainly for people new to the world of ASD. I think almost everyone we've talked to about autism, pre- and post-diagnosis listed Autism Speaks as a resource. They have lists of "red flags" and tons of information on different treatments and a wonderful guide called "The 100 Day Kit" that helps provide a guide for newly-diagnosed families. I frequently visit their website when I'm doing research about therapies and went through the 100 Day Kit to help myself get organized after Bug was diagnosed. Even more, Autism Speaks does a lot of advocating on behalf of families with kids on the spectrum. When Adam was talking to his company about getting ABA covered, he needed more information and was able to get in contact with someone at Autism Speaks who replied the same day and offered to actually work with the HR department directly.

One of the biggest struggles we've faced so far is that so much information on resources is scattered across the city and the internet. It is so helpful to have a website that I can count on as a starting point and a wonderful resource that I can encourage others to use as well. We are proud to support Autism Speaks and are grateful that the support it provides.

We are hoping to raise $300 as a family. If you want to donate to our "team" (which is really just our family):
Adam's Donation Page
 Kim's Donation Page

Thanks!

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!

Not as overwhelmed (or, Mama's tired and I can't think of a good title)

Bit of a downer last time, sorry. But sometimes, I think I work better when I'm upset, I get more focused and more persistent. I did some digging and found some really good resources this week! I got a hold of my contact at Virginia Tech and next week we're going to figure out how we can get the PRT training. It looks like it'll be the end of October or the beginning of November, which is too far away, but we will just make do!

I also found some great stuff from VCU's autism center. They offer several web courses and webinars, and a couple of them you can just do whenever. So Adam and I are working on one right now that focuses on what to do right after your child is diagnosed with autism. I've been through Autism Speaks 100 day kit, but the VCU one had info on the Medicaid waivers, and it's also local, so I figured we could get something out of it. We did get some better info on the Medicaid waivers, and we think we might qualify for one, but need some things clarified, so I emailed one of the mentors they suggested and am hoping to hear back early next week. The waiver would allow us to get ABA therapy for Bug. Adam also is looking into appealing for ABA to be covered. We know that there are other families in the company who would benefit, so it would be really wonderful if we could lobby for coverage.

VCU also had info on a web course available through Michigan State that teaches parents how to promote and increase children's communication through play. There's not a ton of info on it, but the description says that it's developmental and naturalistic intervention techniques, and evidence based--which is basically what we're looking for for Bug. I'm hopeful that doing the course will help us fill the gap until we can get the PRT training in the fall.

In therapy news:

Bug threw me a ball a couple of times while we were at Adam's softball game. Super cool. He's also been pretty interested in the basketball hoop and we got him to sit on our shoulders and throw the ball into the hoop today. :) He even gave batting a ball off a tee a shot.

OT yesterday was so great. Bug had been asking to see Geri allllllll week, so I was happy we could finally go. He tried and really took to a new swing that was more of a back and forth, rocking horse type movement. He didn't quite get that he could move it himself, but he spent a lot of time on it which was really good. He also decided that he would go down a slide backwards, which was so funny to watch. He even managed to walk up the step backwards a couple of times too. It was maybe not quite what Geri had planned or expected, but really, it shows that he's making good progress in his motor planning skills. Bug still tends to be a tough nut to crack when it comes to doing fine motor tasks (like puzzles or coloring). He really resists doing them, even though a lot of it he can do quite well now. So we will have to think about how to make it more appealing to him. I've been meaning to print off letter worksheets for the paint dots. Hopefully Geri and I can find some inspiration to get him going on some pre-writing activities.

Bug is still stimming a lot, but he actually handles it pretty well when I tell him we need to move on to something else. I do wonder how much of it is just boredom, so he reverts to something that is comforting and keeps him active. I also think to some extent it's tied to my stress level, although that could just be that I'm a lot more aware of it the more stressed I am.

All in all, the week ended very well. I'm feeling a bit more (not a ton, but a little at least) in control of where we're headed or at least I have some ideas on things we can look into. Hopefully next week brings us even more answers. :)

Overwhelmed

Not much to report with therapies. We keep plugging along.

Home has been an interesting mix:

On the one hand, Bug has been a lot more interested in balls and balloons. He caught a ball without help for the first time a couple weeks ago and has been fairly cooperative with us showing him how to throw the ball. Last week he spontaneously asked for a balloon, which we took outside for some playing. He really enjoyed throwing it over his head and watching it fall, putting it on the car and in the bushes and telling me to blow it up (because we kept popping them). It was super cool to watch him randomly ask for something and then engage with it and with me appropriately.

Today for the first time, he told me that he wanted a specific pair of shorts to wear. We've been working hard at getting him to get himself dressed and undressed (undressed is much easier). Hopefully we can start having him take the initiative to getting his own clothes out of drawers and getting himself ready in the mornings.

He's also been pretending to talk on our phones--just saying "hello"--which is cute and fun. (If anyone wants to call him, it'd be great practice and a good experience for him!)

The not good stuff:
Bug has completely refused to wear his headphones to do therapeutic listening for at least a week now. Adam and I are not sure what happened.

We feel like Bug is spending an increasing amount of time engaging in "self-stim" behaviors. Self-stims (for Bug: jumping, flapping, galloping and making strange noises) are supposed to be how autistic kids cope/calm themselves if they get overwhelmed or are anxious, but what's so weird to me is that Bug's self-stims are worse--much worse--at home. I would think home would be more calming. He spends almost all of his time during the day self-stimming, frequently while hyperfocusing on books, movie cases, or electronic stuff. To me, it seems they wind him up and then we lose him--like we can't get him to focus on anything else.

Almost any attempt Adam or I make to engage Bug, even in activities he typically likes, he refuses, runs away from, or throws a fit. Sometimes he'll tell us he wants to go outside, so we'll say "Let's get shoes on" and then he'll tell us no. If we ask if he wants to go out, he'll say no. Most of the engagement we get is repeating whatever he says, which isn't getting us anywhere. We bought him some new Angry Bird games (physical, not on the tablet) and he has almost zero interest in anything about them except the boxes. Any attempt to get him to focus on the game aspect, or even just playing with the little figurines, is met with serious resistance.

I'm reading about PRT, and want to implement it, but I don't even know where to start on my own. We were hoping to do PRT training with Virginia Tech this fall, but I haven't heard back in three weeks, so I guess I need to get a hold of them. I really truly cannot understand why I'm not hearing back from people.

The other big issue is that we're trying to make decisions about some form of preschool for Bug. One of the things that PRT really encourages is that the child has plenty of exposure to his typically developing peers, to help learn and build social skills. Truly, they encourage parents to give their children the same opportunities that they'd give them if they weren't autistic. I've been so opposed to preschool, but now I'm wondering if that would actually be the best path. I don't know if I can provide Bug with enough peer exposure without putting him in preschool. I don't know if I even want to be his teacher and interventionist, as well as his mother. I don't know if that's best for him or for us as a family.

It's just been such a mix of good and bad that it's kind of overwhelmed the whole house I think. But there's not much to do other than try to make small steps to lead to big changes. And keep wishing and hoping and praying that we catch the break we need.

Bug loves to spell, s-p-e-l-l!

The cute: We are doing so much singing over here! The ABCs, songs from Super Why!, the Wheels on the Bus. It's so neat to hear Bug singing and he loooooves it. His favorite song from Super Why! has us singing "What letter makes the ___ sound?" and Bug can frequently respond, which is really cool!

Adam also discovered that Bug likes seeing the flash go off on the camera, so if you turn on the flash, he'll actually look at the camera for pictures!

Bug is still doing some good hard work in Speech. Today they worked on verbs using picture flashcards. Kathy noticed that Bug would get particularly excited about "driving" and "swinging"--which are two of his favorite things. This opened up a great conversation between us about different therapy methods. I'm so happy because Kathy is actually aware of and very interested in PRT, so I definitely think we'll be able to incorporate it into speech therapy. She also gave me some suggestions for other schooling options rather than just public school. It was a great conversation.

OT last week was a bit of a struggle. Bug can be so resistant to sitting down with Geri for focused tasks, although once she gets him started he usually completes them without too much fuss. I think he is still trying to challenge her and see how much he can control the sessions. So we definitely have some work to do.

Geri also referred us to an ABA therapist who she thought might be able to work with Bug. I've been able to contact her and unfortunately, she's not covered by our insurance. She did highly recommend we talk to Adam's employer about covering ABA services, and said that some of her clients have had success doing so. She also gave me a bunch of resources about ABA to look into, and mentioned that she is familiar with PRT too. I'm still really hoping we can figure out a way to get Bug at least some time with a trained therapist.

I also got and read the PRT Pocket Guide, and liked it so much I ordered the larger manual. PRT is a version of ABA that is more child-led and less rigidly structured than traditional ABA. It involves finding things that motivate the child to teach speech and social skills, then using positive reinforcement related to whatever you'd doing. It's a lot more natural and to me, makes a ton of sense. One of the things the book suggests is teaching the child questions like "What is it?" and "What's happening". Bug can answer questions like this (at least sometimes) but he has never asked them. Having the ability to ask means he can start requesting information he needs and build his vocabulary which opens doors for joint attention and social interactions. So these are things we're going to focus on at home, especially while we don't have ABA.

One of the things I have been thinking a lot about and trying to work on is providing Bug with a balance of therapy, social experiences and learning while still allowing him plenty of opportunity to be home and "explore without an agenda." My goal is to find more social opportunities for him, especially with typical children his age, so he can develop models and friends. I'm struggling a bit because so many people put their children in preschool and I'm just not sure about it. So, as usual, I've got lots of research to do and then Adam and I have some talking, praying and decision-making too. Who knew raising a kid was so complicated!?! :P

We still have another speech and OT this week, so we keep chugging along!

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!

Who's learning more, Bug or Mama?

So Nana and Papa visited last week, which is why I'm behind on the blog. So let's see what's new:

Speech:
Well guess who knows his colors?! All the sudden it must have clicked for him because suddenly he's telling us that things are red and blue and yellow and on and on. He still has some confusion: purple is pink (pink is pink too) and adorably, he calls black "night". Seriously, so cute.

He has also had us read to him again, not spontaneously, but after we've read a book he sometimes requests it again. Yesterday he had me read "The Foot Book" 3 or 4 times in a row. :)

Along the same lines, he's been having Adam and I take turns reciting "Green Eggs and Ham" to him. Typically I do the "Sam" lines and Adam does the heavy lifting ;) He uses word prompts (Mommy or Daddy) and sometimes looks at us when it's our turn. He also enjoys having us say our parts in specific voices. I can't remember if I've talked about this before, but sometimes he'll have us say things in a high voice or start high then finish low, or a serious voice. It's hysterical, I really need to try to get video of it.

We've also been trying to get him to use longer phrases, with concrete verbs (like "I want to eat pretzels" etc). He still needs a lot of prompting, but he can do it!

He did a really good job requesting Papa to come with him, that was cool to hear, that he wanted to interact with someone other than Mommy or Daddy.

OT:
Last week Adam sat in on Bug's session. Apparently he was a little more resistant than he had been, but we're hoping he was just tired from our visit to the ocean the day before. Bug's been working on doing small tasks like building towers with Legos or pegs, he's attempted a couple simple jigsaws and even tried to hammer a golf tee into styrofoam. Adam has had good success getting Bug to do Legos at home:

Today I tried with him and he did EXCELLENT. He seems to be getting the hang of manipulating the blocks and pushing them together. Our goal is to get him to do increasingly more complex towers (so far we just have him build same color/same size towers. The above picture was Bug's own, unprompted creation. So proud!

We're also working on the therapeutic listening. Adam's figured out that Bug does better if he doesn't start on the first track, so we're working on getting him to wear the headphones for as long as possible. Today I got him to keep them on for a whole track and then a shorter 50 second stint right after. Slow progress, but progress. We really just need to make a concentrated effort about it.

I've been doing a ton of research on ABA and how exactly we're going to get Bug into some form of ABA therapy. I've been able to find some videos on Youtube (Seriously, I LOVE the internet for stuff like this! It's amazing what you can find!) and a lot of it looks like stuff that already happens in his therapies. One video I watched had a boy who was a couple years older and I could tell that he had gotten a lot of ABA because the session seemed so scripted. One of my worries with Bug is that we have to make sure he can respond to variations of the same situation. Especially since he has a fantastic memory, I don't want things to just be rote memorization for him because that's just not how life is. For example, someone might say "I want that toy!" or "Can I have that toy" or "I need something to play with" and those could all have the same response from Bug, even though they're not quite the same phrase. Basically, I'd like things to be as natural and "unscripted" as possible.


There's a form of ABA, called Pivotal Response Treatment (or Training) that is more child-led than therapist-led that seems to be a good fit for us. Part of the reason it was developed was for parents to use with their kids, since a therapist is not always on hand. The idea is to allow the child to lead a bit more and use their motivation to learn verbal, play and social skills. I have gotten a hold of Virginia Tech to do a training on the techniques used and I'm waiting to hear back from them. If that doesn't pan out, we could potentially do online training from the Koegel Autism Consultants in California (again, the internet is great!).

Lately I've been doing as much reading as possible and have found some great videos to watch too.  I am a little frustrated that it's not easier to find information on how parents can implement therapy at home. It seems like it is way more common for kids to just enter school and get the bulk of their therapy from school. Still, I know that we are constantly gaining more info on the best way to help kids with autism and that it is hard to implement changes quickly. I'm really hoping that I can get some PRT training this summer.

I need to get Bug registered in the school system this week so that we can have the school evaluate him and we can develop an IEP for him too. We are still waiting on the full report on Bug's diagnosis, although I think that should be here this week! It's kind of crazy to think that we've only had a diagnosis for a month. Seems like that was ages ago.

Leaving off with some cute pictures of Bug:

This is what autism looks like <3

{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.