Time in the real world

I've been harping a lot lately about getting B out in the community more. I totally understand the rationale behind having him in therapy for the majority of his waking hours. He needs it and it's the most beneficial place for him to be. That said, I really fear that he is in a bit of a bubble and will lose his "public skills" (for lack of a better term) if he doesn't practice. Plus, it makes me much more nervous to take him when it only happens once in a great while. And it is sometimes a very great while: we have gone for a couple of weeks before without him ever being in the car. It's a crazy shift from our pre-therapy life. I think we're going to incorporate more community time in his therapy schedule soon. In the meantime, I'm just taking every opportunity (canceled shifts etc.) to get him out. This afternoon was one of those times. He was free after 11:30 and we hit the childrens museum with big brother and our pca in tow. All in all, it was a very fun and successful outing.

It has been a couple of months since I've taken him there but we used to go fairly often so it's definitely somewhere familiar. He was GIDDY when we got there. Uncontrollably so. There were a lot of differences in him since the last visit: some good and some bad. On the bad side, he has a lot more obvious behaviors than he used to. There was a lot of singing, a lot of jumping and flapping, haphazard running, putting water and toys in his mouth and absolutely no volume control. We got some stares but I am totally over that - he's so much more important to me than what anyone else thinks. It did make me wonder where all the other kids like B are though. Believe me, I can spot them now and aside from one kid with Down Syndrome, everyone seemed pretty darn typical there. My guess is they are either in full-time therapy too or their caregivers just don't bring them. It would be easier to stay home for sure.

Now on the PLUS side, he was more engaged than before. I remember going one time where I could barely get him to leave the security of his stroller. He still retreated there a couple of times but he was willing to try new things and he had a blast. He drove the bus which he hasn't done before, painted with water outside, built with legos and was totally mesmerized watching himself reflected on the tv in the music studio. I'm pretty sure he has never noticed himself in that before. On top of that, he transitioned seamlessly from place to place (not even "typical" 3-year olds always do this). And he had some great vocals "go outside, water, cup, turtle, bus, circle, all done". I even ran a few ABA trials successfully - this therapist mom is never off duty. We had one slight meltdown when we took big brother to McDonalds afterwards for ice cream. Believe it or not, it was because we tried to get him to taste ice cream. What kid cries over someone GIVING them ice cream? And I was really glad that we brought our pca. I still need to be able to give him my FULL attention because he takes off and needs constant supervision. It seemed much fairer for his brother to have someone giving him that kind of attention too - even if it couldn't be me.

Both boys crashed on the drive home. A good time was had by all. Here are some pics:

Driving the bus. This was cool: he said "beep,beep bus" while he was doing it.

 He wouldn't go in this turtle but he thought it was pretty cool nonetheless:

Painting!

 Big brother had a fabulous time too!

Finger food

B just ate his spinach souffle with a spoon! I couldn't believe my eyes... before now, he has considered this incredibly messy dish a "finger food". Actually, yogurt and applesauce are the only things he eats with a spoon. Everything else (well, all dozen or so things he actually eats), he does with his hands. I always put the spoon out and aside from playing with it, he always ignores it. And just now, all on his own, he used it appropriately for every bite. WOW! Maybe there's hope for macaroni and cheese too. I sure wouldn't miss cleaning that up!!

Haircut happiness

Haircuts have been a struggle for the last couple of years. B was great for the first few and then... He. HATED. Them. He was like a different kid - crying, fighting, struggling. I would totally dread taking him every time and have to summon my courage. I hated for him to be seen this way because it is so different from his typical personality. And I also hated that I had to physically hold him back without being able to really explain it all to him. He sobbed the whole way through.

Today was different. I don't even know how it came up but we spent 15/20 minutes of our parent meeting this morning strategizing his next haircut. Could we take our own movie? Take him more often so he gets used to it? Etc. Etc. In my email this afternoon, I had a coupon for our regular spot and so I just decided to do it. We end therapy at 3:30 on Wednesdays so there's a little window of time. Plus, Drew had a sitter here so we could bring them along (to the consignment toy store next door) and I wouldn't have to worry about him while dealing with the awfulness of the haircut like I usually do.

My other worry was him falling asleep in the car since that is always an issue - particularly at that time of day. Sure enough, about 5 minutes before our arrival, he passed out. So, I took him first to the consignment shop. Even something "fun" like this is sometimes an issue for him because of its unfamiliarity. But he did great. He walked in holding my hand and explored the toys. He even labeled a few (Elmo, George, Thomas). We picked up a train, paid for it and left together. NO problem. I held my breath as we walked into the salon but he was fine. He willingly got in the chair, I gave him his coveted paci that I always bring for haircuts and he sat there and watched Cars. He never cried. He never really even flinched. A couple of times, he sort of chanted "ok, ok, ok" as if to say "enough of this" but he was SO good. It wasn't even especially quick. Then, when it was over and we offered a lollipop, he said "lollipop". I don't know what happened - I swear he listens to us in these meetings because when I bring up concerns, the behavior stops. Whatever it was, it made for one happy mama.

Here's the before and after - it's much cuter in person. And it's short so that buys us about 2 months before the next one.

I'm sorry but it's for your own good

This week should be titled "messing with B". We are seriously rocking his world in a major way. We have 2 new programs that, while good for him in the long run, feel pretty torturous.

First, we've upped the ante for his PECS (picture exchange communication system). He's really good at giving us the pictures but not so good at pairing them with a vocal, which is really the goal. So, we kept only the pictures of things that we know he can say, stashed the rest and unless he says it, he doesn't get it. Period. These are not pictures of, say brussel sprouts, these are his favorite things. Cookies. Thomas. TV. Ipad. Etc. Etc. Needless to say, it's making him pretty mad. We have successfully gotten him to make some vocal requests though. We're still in search of that magic key to unlock communicative language for him. As hard as it is, if we can make it powerful enough for him to talk for it, it will all be worth it. In the meantime, it is unbelievably hard to deny him and be responsible for the inevitable tears.

On top of this fun challenge, we introduced a "tolerance" program. As B gets older, he is getting more rigid and resistant to change (aren't we all?). So this one really aims to mess with him - shake things up, keep him guessing. There are a long list of things but basically, we're attempting to get him to try new things and to tolerate them. Simple things like sitting at a different spot at the dinner table to more difficult things like getting in a pool of water or wearing a hat or sunglasses. This too is not easy on him. I caused a huge meltdown yesterday simply by cutting his grilled cheese in different sized pieces. It has been eye opening though. I can easily see how, without any intervention, we could spend our lives walking on eggshells, afraid of what might set our child off.

On a positive note, we re-introduced motor imitation this week. This was something B really, really struggled with and we ultimately had to put on hold. He was great at imitating things that involved objects but he could not do anything with his own body like clapping, putting his hands up etc. In just one week, I have watched him successfully clap, wave, put his hands on his head, touch his face, touch his toes, pat his belly and several others. This is HUGE progress and a major stepping stone for his learning. I've said it before but imitation is KEY. I feel almost giddy watching him and remembering where he was just a few months ago.

Also on a positive note, we had a fun "normal" afternoon today. We had a cancellation in therapy after about noon. Since I already had a sitter here, I decided we should take the boys out for some fun. B rarely gets out in the community these days so I kind of feel like I need to jump at every opportunity. We took them to an indoor climbing/park type place and he did amazingly great. Sure, he ran around like a madman but he played in the bounce house with tons of other kids, transitioned easily between activities, took direction and played appropriately. Most importantly, he had a GREAT time. I'm worn out from it but encouraged and ready for the next adventure.

Bye Bye

B waived and said "bye bye" to one of our therapists today.  And the little stinker totally pulled a fast one over another. He is supposed to say "yogurt" when he wants it. It's not enough to give us a picture since we know he can say it. In typical fashion (when it comes to vocals), he has had to forego yogurt more often than not because he just refuses to say it.

So today, I went outside for about 2 minutes. The second I was out the door, he brought the yogurt picture to his therapist. She had forgotten that he was supposed to vocalize for it. I really think he was counting on that - as soon as mom was out of the room, he went for it. He's no dummy, that boy.

Playing independently

I've always thought B was pretty good at playing. He can keep himself busy and plays appropriately with most toys most of the time. I have learned however (through all of his many evaluations) that he does not stick with toys and does not complete them. He tends to jet from one thing to the next - checking them out and then moving on. One of the very first objectives in his therapy was what they called compliant play. He was being taught how to play when given the directive. He fought it pretty hard. In the beginning, it was literally just putting ONE piece in a puzzle. We worked up from there. Along the way, the objective was altered to focus on "independent" play and the goal wasn't so much about complying with the demand but on his ability to play for longer periods of time on his own. We've used a variety of different toys and he's now up to a target of about 2 minutes of sustained independent play.

So tonight, hubby and I were attempting to have a short adult conversation when he came home from work (a feat not easily accomplished by most parents). B was playing alone in the basement. I'm guessing he had been down there about 15 or 20 minutes when I went to check on him. To my surprised delight, here's what I found:

I then watched him take each of the remaining puzzles off the shelf one at a time, remove all of the pieces and complete the puzzle. Fifteen - maybe 20 puzzles in total: I'd call that some pretty impressive independent play skills!

Apparently we're on a first name basis

I haven't posted in a while. Big brother has been out of school and our routine has been rocked a little. Blogging was one of the things that got pushed aside.

We're cruising along here. B is still doing really well with all of his programs. I continue to be impressed by him. Whenever we've decided to try to correct a negative behavior, he seems to catch on really fast. For example, he had gotten really bad about pulling on me to get my help or attention. It was his primary way of getting his needs met but it reached a point where it was causing a problem. I could never sit down to eat or do much of anything without him trying to pull me away. If I didn't respond, he quickly escalated to crying and pushing. We put a plan into place to consciously block him and limit how often he could pull me around (for lack of a better term). There has been a remarkable change in a very short time period. We just finished a 4 day weekend without a single meal being interrupted. He catches on quick. We're now targeting a new habit that has developed where he is sucking on his hands & fingers. I am confident that we can nip this one pretty quickly too. And we're trying to curtail some of the aimless running he does at the end of the day by giving him a scheduled "free time" outside in the evening to run to his heart's content without anyone placing any demands on him.

He's also continuing to progress with all of his other programs. He is now matching letters and colors and learning lots of receptive labels for things. He can play independently through a sequence of 5 toys (we started with 1 step on 1 toy). He is pointing to pictures in books, using his PECS book to make requests, learning prepositions (on, next to, above, etc. etc.) and lots more. I think he has something like 15 programs at the moment.

Still, talking continues to be a challenge and frustration for me. He continues to progress at a slow and steady pace. The goal now is 24 words or phrases during each 3-hour session which he is meeting. We started at 1. Our attempts to get him to use language are still not clicking though. We recently put all of his Thomas trains in a clear bin. He used to say Thomas multiple times every day. All he has to do to get access to this huge treasure chest is say the word and yet he won't say it. I don't get it. We'll keep trying and exploring and hopefully that magical lightbulb will go on one of these days.

On the subject of talking, he just did do something very funny and awesome. I was holding him because I hadn't seen him much today and over my shoulder, he spotted and started pointing to our family picture. In perfectly clear words, he pointed and said mama, his brother's name and then his dad's first name. Not Daddy (though we've heard him say it many times) but his first name. He repeated it several times. Pretty funny. I'm pretty sure there is so much more awareness and knowledge in there - he just hasn't quite figured out how to get it out. I'm working on my patience in this area and reminding myself how much progress he is making overall and how hard he is working.