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!

Breakthrough!

We had our fourth OT session today. Bug started out hesitant again, although he was more exploratory than he had been the last two weeks. He did roll balls down the slide with Geri again, but other than that mostly he refused everything we suggested ("No alright"--we hear this about a gajillion times a day now. :P ). He got rather attached to a couple of pieces from a puzzle, but wouldn't put them in and ignored Geri as she was doing the rest. We tried a different swing, one that he really liked on his first session, but he wouldn't go on with Geri or with me. Finally, towards the end of the session, Geri said she'd put up an enclosed swing--but she didn't thing he'd like it.

 

He immediately ran to it and said "Swing. Swing." Geri asked if he wanted to swing and he said "Yes please" and let her help him inside. She swung him around for probably 10 or 15 minutes (stopping every so often to check on him) and when she said it was time to be all done because our session was over, he was super sad. Once he got out he ran over to a rope ladder and asked to climb. So Geri held it steady and he climbed almost all the way up. Then he tried a lycra hammock too.

I think Geri and I were both relieved to have a more successful session. She was so surprised that he liked the enclosed, but honestly, we've kind of noticed this more lately.

Case in point, this weekend we were at a friend's house and they have one of those backyard trampolines, enclosed by a net. Bug loved it. He did lots of jumping in it, smiling and even was aware of himself in regards to the other kids, it was great to see. But our attempts at the trampoline area have failed. OT has a small exercise trampoline that Bug doesn't care for, but the same size one that's enclosed at our house, he's totally fine with. He also had good success with a cuddle swing at his autism evaluation, prefers the baby swings to normal ones at the park (or even the ones that just have a back and no front restraint).

I have noticed that he gets uncomfortable sometimes, like you can see how unsure he is about physical play. Not all the time, but a lot. I'm beginning to think there's actually a lot of anxiety there--which makes a lot of sense. If you're not getting a lot of input about where you are in space, it's hard to feel confident in your ability to move around a lot.

Geri also gave us headphones and cds to start the listening program at home. Ideally he'd listen twice a day for 30 minutes each. He can be doing appropriate play, or we can do it while we walk or ride in the car, but we should try to avoid it while he's fixated on something (like when he lines stuff up on the table). This could be a slooowwww journey with him. We have to get him to put on the headphones and tolerate wearing them--a lot to ask a 3 year old. But we're just going to give it as much effort as we possibly can and hopefully we'll move forward with it.

Our dear friends also gave us a little basketball hoop for Bug. He was playing with it at their house--which surprised Adam and me--and they let us bring it home. Bug really enjoys it. He asks to sit in the hoop (which I won't let him). He also really likes to get the ball wet in the water table and then drop it through the net

He also likes to be as naked as we let him be

It is so so good to see him play with a toy appropriately (meaning not just studying it). And hey, if he becomes an NBA star...I mean, he's on the right track height-wise ;)

I'm also starting to get coordinated and get the ball rolling on the recommendations from the autism group. Yesterday we got a preliminary report that basically just summarized what we talked about last week. One of the things mentioned in the prelim report that they didn't say anything about last week was doing genetic testing. I guess with an ASD diagnosis they recommend it because there are some disorders that have a stronger than normal correlation. I want to talk to our pediatrician though about whether he thinks it's necessary because I've never heard that you should before this point.

I also called our insurance to discuss therapy. It's highly recommended that we start ABA (applied behavior analysis) with Bug, but I had been told previously that it wasn't covered. Today I confirmed it isn't. So I need to talk to the clinic and see what other options are out there. ABA is not cheap, I know, but it is a pretty highly recommended and effective therapy.

I also need to put in a call to the school system to get Bug scheduled for a child study. We are going to have an IEP drawn up to see what services we can get and decide whether they'd be beneficial or not.

I also found another therapy, called RDI (relationship development intervention), that intrigues me a bit too. It focuses more on helping autistic kids engage in social relationships, and is parent-led rather than therapist-led. I bought a book written by the creators of the therapy so I can learn more about it (once I do, I can explain better. The first two chapters were all neurology and I was a little baffled ;) ) There isn't an RDI consultant near us, but apparently they can do training over videochats which would still work.

Ooh, the other thing I forgot was that last Friday I was able to sit outside Bug's room and listen in on his speech therapy session with Laura. It was really neat for me to hear him work on stuff and say full sentences--and also to hear how well Laura does with him. She is so good about acknowledging that he wants to be done and then pushing him just that bit further to finish a task. I'm hoping that I can listen in on sessions more often to get a better idea of activities they're doing so we can replicate at home. He is making solid progress with speech, so we feel very good about it :)

That's about it and the Wiggle is up, so it'll have to do. Glad to have a more positive report today!

OT--slow goes

We had OT today. Bug fussed when we pulled into the driveway but was calm and compliant about getting into the office. He didn't want to go in his therapy room, he first ran down to a different room and I had to bring him back. Once inside, he started back up on the cling-to-mom stuff. We tried to give him some time, but eventually Geri encouraged me to keep him from sitting in my lap so he would be more likely to explore the room. He was a little bit better about going around looking at and fiddling with the equipment, but every time Geri would try to enter his space or talk to him, he would run back to me. We did have a smidge of success when he took trains from her, and then in the last 5 minutes, he was OK with her handing him balls to roll down a slide. He then  was pushing a swing but when she asked if he wanted to go in, he reverted back to clinging again.

I. Am. So. Frustrated!

Number one, I feel like he's putting us on a bit. Last week he truly did seem anxious, but today I got more of a power-play feeling from him. Or perhaps, he behaved the same because that's what he remembered from last time.

And that's the problem. Geri wants to keep the room the same next week to build comfort and familiarity, but if he's found a rut, changing things up would actually be more beneficial.

Number two, what the heck happened?! He was plain old excited his first session and did great, and now he won't even swing? Which is weird because he typically loves swings and swinging should help calm him down.

I just have no clue. I feel like we're playing a game and I don't know any of the rules and I can't see the board either.

I do recognize that this might be some rebellion against all the therapy and evaluation we've put him through. It's been a long week. We have speech tomorrow, but I think we're going to try for a relaxing weekend. I had hoped to attempt potty training but I think it's better to wait.

Oh Bug. You make us fight for every tiny success. You're worth it though.

Autism Awareness Month--A Mother's Plea

So I haven't said much about it, but April is Autism Awareness Month. I've seen loads of news stories and puff pieces about autism this month. I've also (rather coincidentally) been reading books by people on the spectrum and finding blogs to follow. I feel a little awkward about the whole thing because we don't know if Bug is autistic or not. But the last few articles I've read having hit on a point I think I should talk about a bit.

Autism spectrum disorder is a really, really broad spectrum disorder. Some kids can hardly function on their own, are non-verbal and struggle with the most basic interactions. Other kids are highly verbal (even advanced) and might just seem quirky or "weird". Every single child has a different set of symptoms and triggers and sensory issues. Because of this range, it can be really difficult to spot an autistic child. And sadly, a lot of people don't know about or acknowledge autism as a real disorder. They say kids are just hyper or rude or shy or oblivious or naughty or a host of other negative things.

So here's my request: When you see a kid doing something "naughty" or who seems out of control or what have you, before you judge that kid, before you judge his parents, stop. Think about it. That kid could have a ton of issues that you know absolutely nothing about. He could be screaming on the floor because the lights are overstimulating and he can't tell you because he can't make the words come out. Or it could smell awful to him. Or maybe something stressful happened there. The kid bouncing up and down excitedly isn't necessarily just hyper. He could be jumping because the sensory input into his joint is stronger if he jumps. The kid who has to touch every. single. thing. might just need that extra stimulation.

We, as parents, know. We know how our kids look, how they make noises that are out of place. And quite frankly, we see the looks they get and we get. But we also know that we still have to get to Target and it's our job as parents to teach our kids to function and behave appropriately in public.

So instead of gaping, or giving a stern look or a stare or whatever, maybe give a kind smile and move on. And if you've got kids, encourage them to be kind. It's ok for them to ask questions. I can explain to people why he jumps or flaps or finds it hard to talk. I know it's hard to be friends with someone who doesn't know how to show that he likes you or even notices you, but they deserve and WANT friends too. Everyone has weird traits, and everyone has amazing talents. Let's all just try to appreciate our uniqueness a little bit more. Ok? Ok. :)

Here's a couple of links to books and articles I've read lately:
Be Different by John Elder Robison
My Clones in Action
Busting Autism myths with a camera

Will post again later this week, after our first OT session! Can't wait! <3