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.

By George, I think he's got it!

On to a bigger cup. No problem. Rock Star.

Cup update

B is now drinking out of a tiny toy cup from Ikea. Within a day of giving up the sippy cup, he started drinking from one of these and now has not had a sippy in almost a week. Of course we will have a bit of an evolutionary process to get him drinking from bigger and different cups but we are done with the sippy and it was FAST and not even painless. I find myself underestimating the little guy all the time. Next up: Potty training.

In other news, his second tube fell out of his ear this morning. No more tubes. Only a little over a year after the surgery. Hmmm - maybe that was a giant waste of time.

Adventures in sippy cups

Don't ask me why but for some reason, I decided that B should move on from drinking out of a sippy cup. It goes along with the big boy bed, the push for self care independence and the general idea of making him a big kid like his peers. B drinks only from a specific type of cup and only water. When we took away the bottle at age 1, he never again drank milk despite being given an unbelievable myriad of cup options. To him, milk belonged in a bottle. And to him, water belongs in a sippy cup. This is where we see that he is in fact rigid and set in his ways/resistant to change even though he seemingly has a pretty easy-going nature.

So here we go. We started yesterday by allowing him to have this regular cup at meals but not at any other time. He was pretty unhappy about that. When presented with other options, he would push it away and cry and then try everything he could think of to get the sippy cup. After a trip to the park, I successfully got him to take a couple of sips from a cup. Small victory!  Today was more of the same except that I could not ever get him to take a drink. After a LOT of crying and failed attempts (and a definite negative impact on his therapy sessions), he brought me to the refrigerator and said clearly "water". He has never said this before and so he was immediately given his beloved sippy cup.

I was somewhat excited about this but our team leader was ecstatic. This is a big step for B. It tells us that he IS capable of talking to get what he wants... he just needs to be really highly motivated. So while it feels quite mean to deny him things (particularly water), this could be a huge step forward. He said water again tonight to request it. If he continues to make the verbal request, it may mean that it takes longer to transition him to a cup but this is okay. The cup is arbitrary progress. Using language to have his needs met is the whole key to communication.

We'll see what happens. B's will is so very strong. But my will for him is stronger.

Love for my big boy

It has been a while since I've posted anything about my firstborn. I really hope that this isn't a reflection of real life. We try very hard to lavish attention on our big boy since there is such a gigantic amount of focus on B around here. For now, B's needs are greater and more all consuming but I'm pretty sure big brother is actually benefiting from this experience as a whole. And fortunately, he seems no worse for the wear.

So here's a post for him.

I love who he is at age 4. I feel utterly loved and adored by him and this is not something I take for granted. He is quite the charmer. Here are some of the things he says to me regularly:
mommy, you look beautiful
I love what you are wearing
You're the best
I'm so proud of you
I love you SO much
You did such a great job at x,y,z

And there is no shortage of hugs, kisses and just general sweetness.

He is polite. He is articulate. He's funny. He has a huge heart.
He is sweet to his brother (some of the time).
He loves babies and animals and an audience. And, of course, his first love - cars.

I can take him anywhere. He's a great helper and can make the mundane errands fun.

Keep up the good work, kid. We are so very proud of you.

Love,
Mommy

Which kid?

Today was our 6 month review with our ABA provider. It has technically been 5 months since the last assessment and 8 months total of therapy. In December, we had a glowing review and were basically told that it's too soon to tell but that things were going as well as they could possibly go at that point. After 5 full months of living and breathing therapy and our external evaluation last week, I didn't expect quite as positive of a review today. I was honestly pretty nervous about what they were going to say.

One thing hasn't really changed. It's still too soon to tell. While B is clearly not on track in all measures (and in fact, quite far off the mark on some), he is excelling in others. I guess it's good that they use more than one method to analyze his progress and ultimate prognosis. On the other hand, it makes it a little tough to know how to feel about it all.

I'll start with the positives. He gained 17 new skills since the last interval (an increase of 80%). He's learning! There are 862 skills in total and he is up to um, 30 but he is accelerating rapidly. He has mastered over 1,300 of his objectives in his weekly programming. His success rate was 94%. He's learning a lot... he just had such a lot to learn! When viewing his videotape assessment with me, they were very encouraged by the difference in the quality of his vocals. He seems to be verging on the next phase of language - with much more intonation and communicative babble with occasional words thrown in vs. stimulatory jargon. He is also on track to master all 4 of his benchmark objectives for this interval of therapy.

His learning assessment standardized testing was also pretty positive. His developmental age in December was 6.4 months; today it was 14.1 (1.6 months of development for every month of therapy). This is really encouraging... if he can accelerate his rate of development, than he can eventually catch up to his peers. His IQ equivalent (since true IQ is impossible to measure at this point) shot up from 18 to 34. In Lovaas' original studies, the IQ needed to be above 30 to eventually reach recovery so he's in the range now. Even at this rate though, he would not be ready for Kindergarten until at least 2014.

Where it's not such a shining review is in his Early Learning Measurement Assessment. He has recently mastered 3 new skills on this test but there are 10 total and it is one of the predictors of best outcome. In the original study, kids were able to master this in 5 months of therapy or by 3.5 years of age. So, B missed that one. Nothing is clear-cut though. In his most recent assessment, he picked up 3 skills and they were ones that were not taught so he learned them incidentally. We'll keep an eye on this test in the next few months.  It focuses on things that are big weaknesses for B: motor and vocal imitation and expressive and receptive language. So it's not a huge surprise that he didn't ace it.

Also, where they have to choose where he is headed based on all of today's data, they selected significantly making progress rather than the options that say he is on track for best outcome. This is discouraging but we can't rule it out yet. I'm so, so hopeful that we'll be checking that best outcome box in the next review.

In summary, B is doing fantastic in therapy but we don't yet know if he's doing as well as he could be from an outcome standpoint. He's making significant progress but it's not as quickly as we'd like. We were shown 2 graphs of progression. Both were similar to where B is today but one jumped up in all areas and the other did not. We can't yet say for sure which of these kids B is going to be. We are sure hoping for the kid who "catches up". We have a kid with some serious potential here. The only thing we do know for sure is that we have a lot more of this ahead of us. A lot more time. A lot more sacrifice. A lot more intensity. And hopefully a lot more progress.