Crash and Burn

One of the frustrating things about Bug is that sometimes success or failure seems completely arbitrary and outside of our control. After our first OT session going very well, last week's was a 100% failure. Bug was fine going in to the office and to the therapy room, but after that he didn't want anything to do with Geri or any suggested activities. He did climb into the ball pit but came out extremely quickly. He tried a tricycle but wouldn't ride it in the hallway and started crying every time we tried to encourage him to do anything with it (like turn around). No swinging at all--really surprising. He got very upset quickly and spent a lot of time clinging to me--again, really surprising. He seemed kind of scared and we really couldn't figure out why. We also tried the headphones and he absolutely didn't want them on him. Big bummer.

So when we go this week, it's going to be a "start at square one" deal I guess. I think it'll go better as we establish a routine and he establishes trust in his therapist. I have been working on telling him that OT is about having fun and playing games and that he will always be safe. We do expect him to still use words and sentences when appropriate though (he really rebelled against this on Thursday). I do wonder if he'd do better if I wasn't in the room. Wiggle comes with us and is a bit of a distraction and Bug uses me as a safety net, so he can get away with more if I'm around.

At home we are having a lot of frustration too. Almost all engagement from Bug comes in the form of reciting books or phrases from tv. Sometimes he becomes completely fixated on a phrase and wants us to repeat it over and over. A little bit of it is ok, but when that's all he wants to do, or if he insists on saying things incorrectly, I lose patience for it. He of course deserves time of his own to do his own things, but when he's insisting that you repeat something exactly as he says it when it doesn't make sense, it's a little nutty. It's like we're playing a game that I don't know and he won't explain to me...I bet he feels like that with us sometimes too.

Sadly, I don't know that he plays with any toys in the "traditional" manner anymore. (As much as it breaks my heart to say it) He often gets upset if we try to play with them or show him. Physical play is still popular, but especially when it comes to a 45+ pound child, there's only so much we can do with that. He is becoming more tolerant of hearing us read books aloud (Wiggle frequently requests books now).

We kind of don't know what to do. He's pretty cooperative and tolerant of games in speech but when we get home we can't replicate to any success. Our plan is to pick a couple of games that we want to play and model and encourage those with him. Everything is a delicate balance between encouraging but not pushing too far. He often responds negatively but actually does seem to be enjoying things, so you always have to try to call bluffs. We also want to work on more play with Wiggle and hope that Bug learns from that and will join in (this is what happened with the books).

I am praying hard that OT last week was a fluke. I don't want to have the same types of experiences we had with Early Intervention OT. I'm also becoming anxious for a diagnosis so that we can open doors for more resources. We are just at a frustrating point right now. I know that no progress comes quickly. That this kid requires us to always keep looking at the big picture while we plug away at our short term goals. But gosh would I like to see him pick up some of the skills he lost...

The Return of OT!

We had our first OT session today. I was really pleased because Bug remembered going there and didn't make any fuss about going into the office or heading back with our OT, Geri. While we were waiting in the waiting room, he kept asking for the plane, because there was a Little People plane there when we came for his eval. I was prepared for a bit of a struggle, but there none! :) Way to go, Bug!

Bug tried a little bit of everything, but didn't seem particularly drawn to any certain activity. He did the swing he did during his eval, slide down a slide into the ball pit (which he wasn't too sure about), tried another swing that he seemed to like a lot, and even held on to the ropes so he could help move the swing. Another COOL activity that he enjoyed was bouncing on an huge innertube that was hung from the ceiling. He was a little unsure about it at first, but I think he didn't know how to get on and whether he'd be safe. I worked with Geri to assure him that he'd be ok and she helped him on and then things were ok.

(I will have to ask next time if I can take pictures, so you can see what I'm talking about)

Probably my favorite moment was when she set up bowling pins for him to knock down. She helped Bug roll the ball a couple of times then tried to have him do it himself. He kicked the ball (which he NEVER EVER DOES!) and then walked over and knocked all the pins down himself. Had to laugh at that, he did knock the pins down, just not the way we expected him to. :)

He also did some simple (non-jigsaw) puzzles but was very resistant to a fine motor game where he'd "feed" a dog bones.

I was glad I got to sit in on his session. I got a few good ideas on activites (like bowling and a bean bin) I can incorporate at home. I need to encourage him a little bit more to do more than read books, but it can be really difficult. Also a lot of times he needs help being physically shown how to do activities. When they were rolling the bowling ball, Geri put her hands over his so they could do it together. I definitely feel like I need to work more on one-on-one activities with him.

The other thing Geri and I talked about today (that I've discussed a bit with her before and with Lauren, our old OT) is starting a therapeutic listening program with Bug.  They use a program called Vital Links. Basically the child wears special headphones and listens to a cd that has music that is enhanced and designed to trigger brain activity that helps the child better regulate themselves. The list of benefits on the website is pretty extensive. Our goal is to start him off in therapy with it and then possibly do it at home as well. The biggest challenge for a young child is that they typically don't want to keep the headphones on. It'll be a slow process, but hopefully very beneficial!

I thought was pretty neat was that Geri mentioned that Bug was talking a lot more this time than at his eval. It's funny how when you're in the thick of it every day you don't notice it, but when she said that I realized that yeah, actually he's making really good progress talking to us to communicate wants. We still have struggles, but we're at a much better point now than we were even a month or two ago!

I tried to not get too involved today and let Bug establish a relationship with his therapist. A few times I helped her understand him or assure him but mostly he worked with her, which is great. I'm so proud of how much work he does and how much he's accomplishing!

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

Finally!

I finally have something to update! We have our first OT session next Thursday. Adam and I are really hoping that Bug enjoys it and starts making some progress again. I know that it's going to be a slow process but I'm excited to begin again.

Our other news is that we have a date scheduled for a diagnostic clinic for Bug. June 4 is the big day!

I'm really glad we're starting to move forward again on therapies. It'll be nice to have some progress to talk about again. :)

Yes and No

Quick note: Still haven't heard about OT. Annoyed.

Speech has been going very well! Bug is going back with Laura without too much fuss and she says he's doing hard work while he's back. One of the biggest things they've been working on is saying yes and no appropriately. Bug has known "no" for quite a while, but "yes" didn't really come in. So they've been working on answering questions (like "Did you have fun") and more concrete things like choosing which puzzle piece goes in which puzzle. We've been seeing some progress with this at home too, although it still does seem like sometimes he isn't sure. He'll say no then yes or yes then get upset. But it's coming.

I need to do more to sit with him and get him to play/work with me. Laura has had some success getting him to take turns rolling cars or playing games, but at home Bug seems completely uninterested. I think I need to encourage him a little bit more, to get past his initial "speed bump" of resistance.

With the good weather, we've been outside a lot. I had the water table out one day last week and Bug loved it! Not really a surprise. With all the gardening I've been doing, I've been able to show him worms too and he seems more interested than I've ever seen him before. He also likes to pick up sticks from the yard and pile them on the cement.

He tried to put this huge branch in the garbage can yesterday. :)

Yesterday at the park, Bug figured out how to make his swing go in circles while he was in it. He really enjoyed that! We always try to give him a good amount of swing time at parks, but he does show a good amount of interest in the slides. He wants to climb some of the ladder-type things more, but gets nervous and comes back after a few steps. But he does keep trying!

We got the paperwork for the clinic we want to take him to for diagnosis and Adam and I filled it out this weekend. Not my favorite task. I need to get the evaluations from speech and OT before I can send the packet back in. But it looks like he'd be evaluated at the end of May or early June.

Will try to be better about taking pictures this week. Here's hoping we have lots of fun even if this weather doesn't cooperate!

Missing OT

So we're still waiting on the report from our OT eval and haven't scheduled any therapy sessions yet. I called on Friday and they said it'll be another week. It's really frustrating to have to wait, especially since we feel like we're seeing some regression in Bug.

For the most part, we've moved out of the tantrum phase (thankfully!) but Bug has been spending most of his time not engaging with us. We try and try and usually he just shuts us down. Especially for me, this takes a toll. Being constantly resisted means you try less, which is the exact opposite of what we need to do. I did read some wise words in a book about activities to do with ASD kids, that said that kids with ASD and sensory issues might not be able to react the way we expect, but we should assume that they benefit from the playing and interaction we do anyway. (Of course it's crucial to be mindful of their reactions and not push too hard if they're afraid, but being passive doesn't necessarily mean inattentive.)

The weather has not been real cooperative with getting outside. Even on nice days, the ground is still so soggy it's hard to play in the yard and most playgrounds are pretty mucky too. We do spend time hanging out in the driveway. Bug likes to sit in the wagon while watching the cars, and it's a good opportunity to talk to him about the things we see around us and what we feel.

Adam and I also talked and realized that we needed to "get back to basics" with Bug. We've been trying to encourage more physical play: rough-housing, tickles, action songs, etc. It's only been a couple of days, and I'm already seeing some minor changes :)

Speech is continuing to go quite well. Bug puts up a bit of a fight to go in the room with Laura, but it sounds like they get some good hard work done during their sessions. On Friday she told me that he frequently tells her he likes things (something we don't really hear much at home!). He told her he likes swimming which made me smile, because he certainly is a waterBug. :) She said that he's doing a great job adding -ing to his verbs, they're working on colors and eye contact when requesting things. He's also doing a great job saying hi and bye when asked.

I did also put in a call to another clinic to diagnose Bug. They are the ones that both speech and OT suggested, and after looking at their website, I feel like they're a better fit for us. The receptionist said that the waiting list to be evaluated is currently out until the end of May, so it'll be a while before we get anything set up with that, but I'm hoping to get paperwork starting this coming week.

I'm really hoping we can start seeing some better weather so we can do more outside activities, since Bug really thrives in more physical environments. But we continue to make do with what we have. I'm anxious to get OT started again, so hopefully we hear back soon!

OT Eval and breaking out of routines

So we finally had our OT eval. It went ok, but not great. Honestly, evals are always hard for me. On the one hand, I feel such pride when Bug shows off his skills. He built a tower using small blocks for the evaluator--something he never does at home--and I just wanted to jump up and dance. On the other hand, it is really, really hard to watch your boy not be able to do things that are age-appropriate. Like play with toys, or scribble on paper. The OT evaluator noted that Bug lacks any purposeful play skills--mostly he just lines his toys up to look at. Hard for me to hear, even though I know it's true. Bug wasn't real cooperative assessing his fine motor skills, the OT said she got him to about 24 months old, which is probably fairly accurate. She did say that she thinks he'll be a "continuous study" kid--he can do a lot it's just he doesn't "test" well. He really enjoyed the gross motor and sensory stuff, especially when she put him on a big swing. Then she got to see his grins :) We are looking forward to starting regular sessions, although I'm not sure when or how often yet.

Speech has gotten kind of interesting. Bug has been rather resistant to going back with Laura. It takes 15 minutes and then you have to kind of force him back. He doesn't seem super upset about it, more of a power-struggle type of thing. At our session on Friday, we came right on time, rather than a couple minutes early, and I walked Bug right back rather than going into the waiting room. He had a bit of a struggle with Laura picking a room, but after that he had a good productive session. So I guess we'll keep doing that until it doesn't work anymore.

We are really starting to hear good communication with Bug. He's pretty consistent with saying hi and bye and waving, which is great. A lot of times he'll correct himself to get longer phrases. "Blueberries. Blueberries. Blueberries. Mommy, I want blueberries." He does more spontaneous phrases too. On Saturday he told me, out of the blue "Put shoes on". :D That was really great to hear. It does take him a bit longer to process and find the right words, but we are all learning patience together.

As I mentioned in the family blog, we have hit a tantrum phase again. Completely developmentally appropriate, and sometimes we expected from time to time (even if we can't predict when). Bug does occasionally swat at us or Laura, but we don't think it's anything too serious. It's hard for him. He has the ideas of a 3-year old and big emotions and really struggles to communicate them with us sometimes. We're hoping that better sleep (we've been having troubles overnight) will help shorten this phase. Not my favorite.

I'm definitely ready to get back into OT and I am really hopeful that we can get some consistent progress from him. The plan is to start big (with sensory and gross motor) and then work on the fine motor stuff. We've got a long slog ahead of us, but I think it'll be so beneficial!