Big(ger) Boy Bed!

After a week of the crib minus the side-rail, we had to revise our strategy. The first few positions we found him in were pretty funny... the one I found him in on Monday morning was downright terrifying. Somehow, this crazy kid had pulled all of his blankets around him and gotten himself under the crib where there is about 6 inches of height. Not only that but he had all of the down pallet up against the front of the crib so he was likely not getting a lot of air. It scared me to death. I went out that morning and purchased a mattress and then we rigged up the bottom of the crib so he can't get under. We'll get the crib out of there soon, buy a bed frame and move forward. On the bright side, he slept for TWELVE hours last night. He is one crazy sleeper though. See below:

Big Boy Bed

B is sleeping in a Big Boy Bed! Well, sort of. We just took the side railing off of the crib and converted it to a toddler bed. This is a stepping stone since he obviously will need a twin mattress rather than a crib-sized one in the near future.  This is one of those weird milestones for a parent - there is no right or wrong time to do it and really no developmental milestones to guide the timing. A lot of kids move to their big bed when the crib is needed for a new baby or when they start being able to climb out of the crib.  For our first, we did it on his 3rd bday. HIs new bed was a bday gift. I remember worrying a LOT about the transition. I didn't think he'd ever go to bed as well or stay in there. In reality, it was a complete non-event and he treated it exactly like his crib for the entire first year. He continued to call us to get him up and didn't seem to realize the new freedom he'd been given.

With B, I spent a lot less time thinking about the transition and did it somewhat on a whim. I wouldn't say it's totally a non-event for him but it's going fairly smoothly. We put a big down pallet on the ground in front of it in case he falls.  And we've found him in some interesting positions. I don't think he's falling out but rather choosing the floor bed. It's kind of fun to open the door in the morning to see where he chose to settle. He also has come to the door to come out when we attempted a nap and one night when he didn't think he was quite ready for bed. All in all though, he's doing pretty well with it and it's just one more step that moves him further from babyhood and closer to his peers. 

On the spectrum

You might think this is B's work. After all, one of the classic symptoms of Autism is lining up toys... cars, in particular. But alas, this is the work of his 4.5 year old big brother. It's one of hundreds of "parking lots" or "traffic jams" that he puts together on a daily basis. You can see why we might not have thought anything was unusual about B's early play skills. Maybe all of us are a little bit on this spectrum somewhere.

B sings the ABCs

Finally got a video of him singing... sometimes he sings clearer than others. This is about middle-of-the-road. Not bad for a kid who is "nonverbal".

Also note: he has a bad, bad cold right now and is in desperate need of a haircut.

http://www.youtube.com/watch?v=oKbI5FkglVc

Fourteen

Number of protests this last week = 14. Down from 30 something the week before and down from EIGHTY something when we first revised our approach. Fourteen. A little more than 2 per day (in a 6 day per week schedule). I can handle that.  Baths are still going well, diaper changes are going well, walking to/from school is going well. Good stuff.

I took big brother to the eye dr. today. Somehow his "good" eye has gotten worse and the weak eye might even have started to over-compensate for the good eye that we were dilating. Verdict: he already needs a new, stronger prescription in both eyes and we may even end up patching what once was the "bad" eye to get the good one working better. Does this sound like science to you??

highlights of the day

• Asked B for a hug and he leaned in and gave me one!!
• While watching the Incredibles this morning, he said "incredible" several times.

doing therapy myself on and off when I can today as big brother has a lovely case of the stomach flu. Seriously hoping that B (and me and hubby) do NOT get this one!

Our version of Autism

"If you've met one child with autism, then you've met ONE child with autism". Or something to that effect. I'm not sure where the quote originates but it has really resonated with me ever since we started down this path. Autism is a spectrum disorder and the spectrum is very, very broad. It's actually rather astounding how vastly different kids with the same diagnosis can look/act.

Not surprisingly, Autism has a complex set of criteria. These are the 3 primary categories and then there are 4 subcategories within each one (which I won't list here):

1) Qualitative impairment in social interaction
2) Qualitative impairments in communication
3) Restricted, repetitive and stereotyped patterns of behavior, interests and activities

Autism takes many forms. I'm sure it will continuously evolve for us, but for now - this is what it looks like for B and our family:

The most significant impairment for B is language. It has always been the one thing that we were concerned about and it's still the biggest gap and biggest problem. The older he gets, the more obviously he's behind. It's the area we hope to see the most progress. It's what keeps me up at night. And it's what bothers me the most. I *think* I can handle it if B maintains a lot of autistic traits but I don't know that I can take it if he doesn't learn to talk.

Socially, he is also behind but not as obviously. He is a little love bug. He loves to be held and rocked and snuggled. He will sit on my lap and watch a show or movie for long periods of time. He wants to be around people and he smiles and laughs but doesn't know exactly how to interact in a play situation with other kids.

As for stereotyped patterns of behavior, he seems to be developing more and more all the time. As much as he is progressing in therapy, the autism is also progressing. This is probably the area where it is most obvious. We have a LOT of bouncing and jumping, some flapping, occasional tip-toe walking and stereotypical gibberish language and laughter. He is also OBSESSED with Thomas the train but this one doesn't really bother me. We are parents to another little boy who is equally (if not more so) obsessed with cars and he is neuro-typical in every way.

And here are some of the more common autism characteristics that B just doesn't seem to have at all:

1) Behavioral problems. B continues to be the easier of our kids... even without the ability to communicate verbally. Every time I think he is developing some negative behaviors, they disappear rather quickly. Case in point - he is back to LOVING the bath. He even tried to climb in before he had his clothes off the other night. Did I mention that it took 9 months for his big brother to get over it?

He also insisted on being carried and refused to walk into big brother's school a couple of times recently. That too went away. No sooner do I voice a concern than he just moves on from it. He does cry and tantrum in therapy. But let me fill you in on what that typically looks like. Imagine being comfy in your favorite chair and watching your favorite show. Someone pauses the show and tells you to get up and do something. Would you be happy? For the most part, he will jump right up now without a peep. I'm pretty sure most kids wouldn't. I know I wouldn't. He is far more compliant than your typical 3-year old. For this alone, I believe we are extremely fortunate. Again, this could change. I hope we don't get a case of the terrible 2s when he catches up developmentally. I can't imagine what could be worse than 2 year old behavior from a much older and bigger child.

2) Sensory issues. Most kids on the spectrum have some sort of sensory problems: sensitive to sounds, touch or a myriad of other symptoms. I still haven't really found any in B. He may crave touch more or be sensory seeking so-to-speak. I'm not sure. In any case, it doesn't seem to be affecting his life thus far.

All in all, he's a sweet, good boy. He just happens to be a lot more like a 1.5 or 2 year old than an almost 3.5 year old.

And he's still rocking it in therapy. He had his highest acquisition rate ever this past week. He's basically knocking it out of the park on a daily basis and having fun doing it. Stay tuned.

Thanks, Buddy. I needed that.

I just gave B a bath. For the last 3-4 weeks, this has been a task of extreme dread and stress. He has always been really good in the bath. And all of a sudden, he FREAKED out. He cried and screamed and refused to sit down. One time, both hubby and I had to hold him back just to get it done. I tried lots of different approaches and each time was the same. The only thing I could do was to figure out how to get him in and out in 5 minutes and pretty much hold my breath the whole time while he seemed to be under immense duress. Fun stuff.

My big boy went through two anti-bath stages like this. All of a sudden, out of the blue - just HATED it and seemed petrified. And the second phase lasted an entire 9 months. Not days. Months. We had finally gotten to a point with the 2 of them where I didn't dread what should be a fairly enjoyable event.

And then B started up. I was bracing for another potentially long road.

So tonight, after an especially taxing day, I geared up to do the bath. I took him away from his coveted ipad and planned for the worst. Then I changed a diaper which has also been a battle in recent days. Once undressed, I decided to wrap him up in a big towel and just sit with him for a while. Over the last few weeks, he has really seemed to love this post-bath ritual. One time, he even pulled the towel over for a second cuddle after I had already dressed him. After a couple of minutes, I plopped him in the tub. He didn't cry immediately or try to climb out. I started to drop a few toys in. A couple of weeks ago, we had some success getting him to laugh at this game but he still started the crying and freaking out as soon as I started to wash him. This time, he grabbed the toys from my hands and dropped them in one at a time, giggling. It seemed as if he remembered the game. And then, to my surprise, he sat down and happily took a bath. I even got some good vocals from him. He said turtle (sort of) and sang bye bye when I sang a goofy bye-bye water song.

It could be a fluke. Next time may be the same old battle. But it made me really, really happy. And this, my friends, is a prime example of the daily roller coaster my life has become.

I need my miracle

It's hard not to get discouraged. As I have alluded to previously, B is not progressing with language the way we had hoped. He is doing fabulously with his programs. He gets it and they can teach him. The goal of ABA though is to teach him to learn. At some point, he is supposed to start being able to generalize and learn things on his own. It's obviously not possible to teach him everything in life in such a simplified, repetitive manner. We need to see more of him learning things on his own... imitating on his own... catching up so to speak.

There are 2 conversations in the last couple of weeks that are really bothering me. Both were with the supervisor of our team. One day when I was expressing my concern about language, she mentioned that we always talk about "best outcome" which is amazing and a miracle but that there are lots of other kids who may not quite get there but are so close and still have great lives but there is just something that still holds them back from losing their diagnosis and achieving "normal".

And then today, we had a conversation about alternate communication devices. When B was in special ed, they started using PECS (picture exchange communication system). It was a book of pictures on velcro and the goal was to get B to give the teacher a picture to express what he wanted or needed. I didn't like it. It's not what I want for him. I want him to talk. When we started ABA, we agreed that it would make sense to see if we can get him talking before we start looking for alternatives (which are meant to be a stepping stone to language - not a replacement). But this morning, we revisited the idea. We're 6 months in and his language (aside from the singing) has really not taken shape. It's our choice but we've been asked to consider whether we want to try some sort of alternative communication (perhaps utilizing the ipad) to see if it advances his language skills.

In short, these 2 conversations are tearing me apart. I'm not ready to downgrade my expectations. We have so much invested - all of us - to expect anything less than a miracle. We have turned all of our lives upside down and it's hard. Really, really hard.  And while I know that it's the right thing for B regardless, I have a very hard time stomaching the idea that we could wind up with a kid who carries around a device to talk for him. Not B. Not my perfect, sweet baby boy.

None of us are giving up- that's not what this is about. I know the greatest rewards often have the biggest challenges. Blah, blah, blah. I want this blog to be about hope, faith, perseverance. And most of the time it is. But right now, all of that is superseded by how I feel at the moment: This is not fair. This is not how it was supposed to be. And, in a nutshell, it sucks.