Great Week!

Bug has just been on a roll this week!

Speech: Laura has Bug working hard and he is doing a great job meeting her challenges! Today he actually requested a specific book from her. He does this more frequently at home now, but it's good to see he's willing to work with others on it too. They're still working on the difference between "I want" and "I like" but he's at least doing full sentences, which is great.

At home I've been noticing (especially today) how far Bug has come. We hear lots of full sentences and he responds fairly quickly to familiar requests ("Get your shoes." "Can you pick ____ up?" etc). Today he and I were in my bed and he asked for his blanket. I said "Your blanket is in your room." and he climbed down, got it, and came back. This sounds so trivial, but he used to just say "blan, blan" and if we said where it was he'd say "get, get". It is so rewarding to see such strong progress from him!

OT: We had a really good OT session yesterday. Bug immediately went for the tent swing, and cooperated with Geri to get his shoes and socks off before getting in. She initially wanted to only do about 15-20 minutes in the swing, but his "M'Gewi, I...I want swing please" got him a full 30 minutes. She then got him to complete a few small tasks and rewarded him with swinging. Nothing extraordinary, but it was a good start and a good way to show him that he'll get what he wants (swinging) if he does a little work for her. This is basically the same system Laura uses in speech.

We also have done the headphones/listening therapy with him. He seems ok with the concept, but won't keep the headphones on for more than a minute (and that's pushing it). I've been trying different places (driving, at the grocery store) and different activities with him to try and distract him while he's wearing them. The most successful is to do something tactile with him like play with cars or put lotion on him. We've kind of dropped it the last few days so I'll have to pick it back up again.

I've also made some headway with lining up therapy for him. The ABA clinic I contacted called me back and is going to check with our insurance to see if there's a way for us to get at least some of it covered. The out-of-pocket costs are just too high for us--I would need to get a full time job to cover therapy and childcare while I was working, and even then I don't know that would be enough. I did contact a clinic that runs through Virginia Tech too, they do an intensive parent training clinic on ABA techniques. It would be quite a hike, but I'm hoping there would be a way to accommodate us.

I also got a hold of the Early Childhood coordinator to get a child study set up for Bug. This would be the first step in determining what services we could get through the school system and getting an IEP. So at some point this summer we'll have the child study done.

I did talk to our pediatrician and he recommended that we do the genetic testing. The two main benefits for us would be knowing if it's a genetic issue that would potentially affect our other child (or children, at some point, maybe) and also if it's attributed to a syndrome we'd have a better idea of what to expect in the future (future issues that might come up, or how much progress we'd be able to make). I'm not in a huge rush to line up the appointment, but I should probably put in a call.

The other big thing for us: POTTY TRAINING. As the Bug would say "Oh-me smokes" (Holy smokes). I can't believe we're attempting it, but we are. This is a three day weekend for us, so I figured we'd give it a hard push. So far, I'm very please. Bug seems to be ok with (not super thrilled about) wearing underwear, which is a big relief. He was initially COMPLETELY resistant to sitting on the toilet, but I've been able to break it down into smaller steps to ease him into it and that made for fast progress. I'm going to detail this out, mostly if another parent stumbles across it.
We are not using a small potty for two reasons: 1) Bug is really so big I don't think he really fits on a little potty very well and 2) It would add another step/transition that I'd like to just avoid. **Note, if you don't care about the actual process, skip the blue text below**

We're doing a 10 minute cycle--every 10 minutes I take him to the bathroom. It's exhausting, but apparently successful with autistic kids. You praise them if they're dry, reward them if they "go" and sternly tell them that they need to go in the potty if they're wet. So he's great about heading up to the bathroom, turning the light on and getting out of his pants. After that, things broke down almost completely. He wouldn't use the step stool to sit on the toilet. So for a few tries, I had him step on the stool (with help) just in the middle of the floor, not near anything. Then when he felt comfortable with that, I started moving the stool closer and closer to the toilet. Typically it seemed like it took about 2 cycles to get used to each baby step. Then we worked on sitting him on the closed toilet. Then things broke down again when we tried with the lid up. Bug is super uncomfortable about this and really tenses up. I tried to push the issue but he really was bothered so after speech we just laid off. I bought a potty stool off Amazon. We have a little seat that goes over the normal one, but he is not ok with that either.

I figured we'd just give it a rest until we get that thing. I thought the handles would be nice for him to hold onto.  So naturally, twice this afternoon he's ASKED to go potty and has sat briefly on the normal seat. :P He is still quite nervous about it and I have to keep my hands around him so I can't show him that he can kind of prop himself up. He seems ok sitting for a while. I put a basket of books and a couple toys in the bathroom for him to look at. He is good about flushing and washing hands, so we've got a solid take on the process at least. We decided that we're going to slow down a bit and take him every half hour just so we can keep the process fresh and make some progress on being ok on a regular seat (seeing as he'll have to go potty at therapy and playgrounds and possibly school). Once we get the potty stool then we'll be more intensive again.

I'm super proud of how well he's handled it so far. No meltdowns, super cooperative for the most part. He understands at least that "potty" means go to the bathroom and sit on the toilet. Hopefully it won't be a stretch to pee and poop. I have a few worries about the actual training part too, but I'm trying not to get too far ahead of myself. First we have to be ok sitting on the toilet.

I am grateful that we've had all the evaluations because it's given me a better idea of what Bug gets hung up on. One of his biggest weaknesses is motor planning: He doesn't always know how to move his body the way it should move. We saw this in OT and I see it regularly at the park: Bug will climb up a ladder to a slide, or an open climber and freeze because he doesn't know how to get his feet out from under him to sit at the top of the slide, or he's at an angle on the climber that he'd be more bear-crawling than climbing and he can't figure out how. It's kind of a coordination thing.

Today in the bathroom, we worked on stepping on the stool not near anything so he could focus on that and get the feel of how to do that. Then we worked on turning around on the stool (ie, stepping up facing the toilet, then turning to face me). Then lowering him onto the toilet seat. It didn't take long at all for him to realize, ok, I can do this, this isn't so different from what I do normally. I've learned that this is what it's going to take sometimes. And it's a little baffling that sitting on a toilet is stressful but kneeling on the couch arm and leaning over a gap to danging his torso in the trampoline is not a big deal at all. :P But it is what it is, and we'll help him figure it out all the same.

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.

Oh the difference 24 hours makes

God must have heard my prayers yesterday because not long after I blogged, I got a call from Commonwealth Autism Services that they had a last minute clinic cancellation for this morning if we were able to make it. Sometimes, it is so so nice to be stay-at-home. Adam was able to take the morning off so we took the whole gang in. I have to say that I am extremely proud of both boys, Bug handled the evaluations and transitions really well and Wiggle did great for being woken up so we could go.

The first part of the evaluation was an assessment of Bug's social and play skills. It was just Bug, me and the evaluator and I was mostly there as an observer and only offered comfort to Bug as needed. The other specialists and Adam sat behind a one-way mirror. A couple of times the evaluator had me try to interact with Bug, but mostly I stayed out of the way. Bug was not real cooperative with the tasks and wasn't real interested in games suggested. He did enjoy watching bubbles being blown, a little rocket launch toy and surprised me when he helped put "candles" into a playdough "cake". Overall, we felt like he was pretty well represented with the activities.

After that assessment, he went with a speech therapist and an occupational therapist into their "sensory" room while Adam and I were interviewed by the clinical psychologist. Basically a lot of questions about whether Bug does certain behaviors and such. This part is always hard for me because there is so much that Bug doesn't do that developmentally, he should.

Once we finished our interview, we met with the whole team to discuss how things went and where we should go from here. It was A LOT of info to digest (especially while trying to keep two littles happy) but we'll get a report from them in a month or so.

We got to hear from the ST and OT about his evaluation with them. They said that initially he was really really uncomfortable and has a lot of anxiety when he's not with us in an unfamiliar place with unfamiliar people. They quickly realized that they weren't going to be able to work with him together, so they did one-on-one while the other observed. Verbally, Bug has a lot of the building blocks he needs, but he mostly relies on reciting phrases he has learned "I want ____" etc. or using nouns. The ST noted that he enjoys sing-song and rhythmic talking and that he seems to "read" stories using his jargon with a few real words intermingled. One thing she said that I had to laugh at was about knowing how hard to push him without going too far. Didn't I just say that yesterday? She said one of the biggest things is meeting him where he's at, pushing a little but stopping once you have success. He is intelligent and once you show him (model) what you want, he will do it, so you leave him alone.  The OT noted Bug's anxiety levels were pretty high, although he kept himself together with no tantrums (big progress on this!). She said that anyone who works with Bug needs to respect his anxiety and give him a little bit of time to adjust to the environment rather than trying to pull him to task right away. Agreeing with how Geri evaluated Bug and our notes, she says he's a high arousal kid. He is constantly moving and really enjoys tactile stimulation (like touching, hugs, etc) She said that they had some good success when she put on some "zen" type music, had him swing for a bit and then he was able to sit for tasks better. She said that he couldn't handle a long time in the swing but would keep coming back to it.

Ultimately, the team agrees that Bug has a lot of the typical autism signs, although not really any of the negative (behavioral) symptoms (mostly the anxiety). They suggested that we look into Applied Behavior Analysis (ABA) therapy and that would really help bring the social abilities up.  They also really encouraged us to get the ball rolling to get into the public school system. They said that there are a lot of options for us even if we don't want him in a classroom. Developing and maintaining an IEP for him would allow us to access services as we felt we needed them. We are a little bit more nervous about this aspect, just from all the stories we've heard from friends and such, but they sound super supportive about making sure we know what we're doing and helping us through the process. Unfortunately, I can't say a whole lot else about the "bottom line" stuff until I have the report.

I'm glad the evaluation is done and that Bug didn't seem too bothered by it. Personally (and this is all still very fresh, as we just got back 4 hours ago) I have A LOT of emotions about it, kind of all over the board. It is always gratifying to have others note the issues we notice and offer suggestions for support. I'm not surprised being told that he is on the autism spectrum. I'm a little sad, because I know that this is a lifelong thing, he's not really going to snap out of it--but I do have full confidence that we can make a lot of headway. I feel lost too, because now we have to make all kind of decisions about therapy and schools. We have a ton to learn. I need to learn how to encourage him and teach him in ways that work for him. To some extent, I feel like I need a crash course in OT/speech/teaching techniques so I know what the heck I'm doing with him. I'm freaked out by the prospect of putting him in school and into such a structured environment because I really don't feel like little kids belong in super structured environments. And then I feel guilty because everyone else seems to disagree with me on that. I'm not trying to be pessimistic, because I'm not really. I love Bug so much and I promised him and myself that I will always always fight for him. He forgives me for making mistakes, probably more quickly than I forgive myself. I guess we just have a steep climb of learning ahead of us.

Thank you to those who said prayers for us and thought of us today. We would really appreciate continued prayers as we learn to accept our diagnosis and plan for therapy and education for Bug and for the family.  <3

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!