More of the good stuff

It has been quite a week around here. We had a ginormous snow storm - something like the 5th largest...I could be totally making that up but suffice it to say, it was a LOT of snow. We were basically snowed in for 3 days. Hubby had to make it out of town through a series of very annoying and difficult hurdles so the boys and I were on our own for a few days. Then my big guy got a stomach bug followed by a doozy cold. Bring on the Christmas vacation!

Things are happening so fast and furious around here that it's hard to keep up. The singing is still totally taking off. He probably has over 10 songs that he sings now. Yesterday, he was even hearing songs for the first time and trying to sing them. This is a huge step. Kids learn by imitation. B is missing that ability. If he can learn to imitate, he can be taught so many things including language/communication. I have yet to get any of it on video (why do they always turn off as soon as a camera comes out?) but it is so fun and so amazing. He sings the complete ABCS including the "now I know my abc" part, twinkle twinkle little star, Elmo's song, a couple of muppets songs, some of the toy story theme song, a couple of songs from a group called super simple songs on Youtube and still more.

Since he seems to be responding so well to videos, our team tested out something new today. They videotaped themselves doing simple things (SUPER simple like putting arms out or spinning or tapping on a table). B then watched the DVD and imitated what they were doing. He seemed to totally get it. It was amazing to watch. I can't even put it into words because it sounds SO simple but he has never copied anything we've tried to teach him. He just didn't seem to comprehend the concept. To see him figure this out with barely a prompt was fascinating. I am in awe of our team. Obviously, it's a whole lot more work to film these things, put them on a dvd and THEN teach to B. vs. teaching 1-1   in person.  My confidence in them grows by the day.

Tonight, when hubby put B to bed, he labeled at least 5 or 6 things when Daddy pointed to them (frog, dog, ball, duck, car, boat, cat) and then POINTED himself to the buttons in his Thomas book and named them (Thomas, Percy, Bus, Helicopter). Someone pinch me.

On the flip side, he has been on a bit of a food strike and waking up in the night pretty consistently again. It's certainly a roller coaster and a marathon. But as long as he keeps giving us these awesome bits of glory, we're not about to jump off the ride.

Hope

Yesterday was our first 6 month review of B's progress. Of course, he has only been in the program since September so it was really more of a 3 month review. It's premature at this point and there are absolutely no guarantees but it was a really, really good review. The data confirmed how we've been feeling all along... B is getting it and he is learning and progressing!! He has made some huge strides in a very short period of time. We were told that everything pretty much looks as good as it possibly could at this point. Plus, the staff was so full of praise for hubby and I that we felt like rockstars ourselves. It's good to know that the hard work is paying off. I'm proud of our family and full of hope for our future. Hope is a beautiful thing.

B was in rare form during the meeting too. He was in a therapy session downstairs. We heard laughter and all sorts of good noises (no crying) while we had our meeting. He came up to me at one point during the meeting and jabbered to the whole group, then sat on my lap and picked up my pen and scribbled on my paper. He seemed to be hamming it up. What a change from the kid they would've seen a few months ago. Later,  we heard him belt out "That's Elmo's song" with some major gusto. The singing has totally taken off. We have a new program where he is to be given whatever he "requests" verbally no matter what so that he gets what a great thing language is. I don't know if he's on to us or if it's just a coincidence but the first session where that was implemented tallied THIRTY of these vocalizations. And he is just singing ALL THE TIME. Very cool.

Yesterday, we also said goodbye to our senior therapist who has become a dear friend and part of our family. I literally choked back tears every time I looked at her in the meeting and the waterworks were full on when we finally said our goodbyes. We will always be grateful to her and will not forget her contributions. The first couple of months are key and we couldn't have had a better leader to get us up and running. Our time together ended too soon and she will be sorely missed.

Husband of the year

So, I have the greatest husband in the world. For my bday this week, he gave me the best gift: a day off. All of you moms know what a foreign concept that is. Even more so now that we have such a packed therapy schedule. I had a fully indulgent day of shopping and spa treatments. And then came home to roses and cards from my boys followed by a decadent dinner with my hubby. What more could a girl ask for? I could not love him more.

In addition, he took on the job of mr. mom for the day and got a taste of what the day-to-day is like around here. It sounds like he was a rockstar (no surprise there). I don't think he's anxious to trade roles anytime soon though...

The laugh

We had our weekly progress meeting yesterday. It had been a few weeks because of Thanksgiving and a dr. appointment for B. We went over the highlights for both of the last 2 weeks. Two weeks ago, he had his best week ever. His "acquisition rate" was close to 8 - meaning he gained 8 new skills in one week. Um, yeah - that's awesome. It went down last week but he missed 3.5 days of structured therapy due to the holiday so it's not a totally accurate representation. He appears to be thriving.

We're addressing a couple of new things that are a bit hard to hear though. First, we've started a "procedure" whenever he cries. He has to do a totally arbitrary task - putting rags in a basket, then wait 20 seconds to see if he calms down, then keep repeating it until he calms. One of the first times, this went on for about an hour but overall, it seems to be reducing the length of time he spends crying. This is one that baffles me. It seems totally counterintuitive and honestly, I just don't get it. But I trust our team and their expertise so I guess time will tell. I know I would LOVE to cut out the crying. It still kills me to listen to it.

Secondly, one I've really been dreading - his laugh. In the words of our team leader, "B is super adorable" (I tend to agree) so it's hard not to get caught up in his laugh and inadvertently reinforce a stereotyped behavior. B has a couple of different laughs and I have to admit that I adore both of them. One of them is a typical laugh where he is genuinely delighted about something. The other is what they call a "stim" meaning self-stimulatory behavior. This is the one where he is sort of out of his mind, drunken laughing at nothing in particular. This is the one he does alone in his bed for hours in the middle of the night. It too is adorable and it's no secret that I am a fan - after all, that's the name of this blog. The problem is that it prevents him from being able to focus, to learn and really to function. It's one of those things that separates him from his typically developing peers. So, I'm not surprised that the topic came up but I know I cringed when it did. Fortunately, at this point - we're not looking at stopping the behavior or having any sort of negative consequence. We were all just cautioned to avoid reinforcing it (i.e. coochy, coochy coo - B, you are SO cute and funny) and not to try to run any of his programs while he's off in his own world that way. No big deal I suppose. I just don't want to lose my happy silly guy. It still hurts my heart to acknowledge that something I have always found so endearing is part of the autism.

We've had some recent sleep disturbances again. B has been waking up in the night and not napping consistently. We had about 3 nights in a row of poor sleep. Hopefully that won't continue because I am sooo feeling it. Last night, he slept through the night but woke up early - as in 5 a.m. early. In addition to his chatter and laughing, he belted out a strong Twinkle Twinkle Little Star. Even at 5 a.m., it was music to our ears.

Dates with my "big boy"

B has become such a focus in our house since we started treatment. He has a large cheering squad who play with him and go berserk over every little thing he does and they are here 40+ hours every week. On top of that, mommy & daddy are required to spend a significant amount of 1-1 "therapy" time with B every week. All of this means that there is a lot less attention to go around.

This is such an extreme change for his big brother. I always felt guilty before because my oldest was so dominant in demanding attention and B didn't demand it so didn't get nearly as much. Since that is the nature of my big guy's personality, I haven't ever really been afraid that he would allow himself to be overshadowed by a sibling with special needs. Still, I can't claim that his life hasn't been completely changed by this new regime. There are a lot of benefits for him.... super-cool, fun therapists that play with him too and much more focused play time with me since I have to keep him from intruding on therapy and can't really multitask or make him play on his own much anymore. And he has school 4 mornings a week which gives him something of his own. Still, there is a lot of "wait just a second" or "yes, I can play with you but only for 2 minutes and then I have to get back to working with B". There are changes in us as parents too of course. We're busier, more stressed and pulled in more directions. I find my patience wearing thinner and my expectations for him growing so that he can be more independent and the "big boy". For the most part, he has really embraced it. He's proud of the things he can do on his own now that he's a big boy and he LOVES having all the "teachers" around. We do see twinges of jealousy from time to time though and disappointment when he doesn't get to play for as long as he wants to. It's heartbreaking. 

So now that we have a regular sitter, I'm trying to find ways to make sure that he knows how important and special he is. And ways for his life to be a little more "normal" like it was before. Every week, we will have either a "mommy date" or a playdate with friends... or both if he's lucky. Last week was the first mommy date. We took a half day and went to the mall of america, rode rides, had lunch and ice cream and just generally had a great time together. Today we ran some errands (including a haircut for him) and then went to a different mall and rode the train and had lunch. After lunch, he jumped down from the booth, threw his arms around me and said "I love you, mommy". This is the first time he has ever initiated those words - it has always been "I love you too". It's a feeling I won't soon forget and I can assure you that these mommy dates will continue. I have a million things I could've been doing instead but he just proved to me that this is time very well spent. 

Giving thanks

I have a LOT to be thankful for. We have everything we need in abundance - a roof over our heads, a warm place to sleep, food to eat, etc. etc. However, there are a few things I'm particularly thankful for on this day:

The gem of a husband that I have who not only cooks but cooks AMAZINGLY. I have not had to lift a finger for our delicious thanksgiving feast. An added bonus is that he actually LIKES to cook. I do not take this for granted.

Our incredibly supportive families on both sides - they are supporting us on multiple levels and I could not be more grateful

B's therapy - it is such a good feeling to know that he is getting the help he needs and I am thankful for the awesome people who work with him

The wonder and delight my big guy has for xmas and thanksgiving this year. So fun!

that I got to be in my pjs until 3:00 today and we have 2 more whole days of just our foursome

that we get to spend xmas with our loved ones

There is lots more. Lots, lots more. 2010 hasn't been an easy year for us and it's easy to lose sight of just how much we have to truly be thankful for but we are very, very blessed.  Happy Thanksgiving!

Definite progress

We did a new videotape today. It goes like this: 10 minutes of B playing on his own while I totally ignore him, 10 minutes of him directing what/how we play and then 10 minutes of parent-directed play where I have to get him to play 5 different toys with me. Two months ago, B cried/screamed/tantrumed pretty much the ENTIRE 30 minutes because he wanted to leave the basement. No fun. Today he was a different boy. I still didn't feel like it was a totally accurate assessment of his play skills but it was at least more representative. For the first 10 minutes, he just jumped around and ran and laughed and ignored all toys. He played right next to me but did not require my attention. The next 10 minutes, we played "social" games like tickling, pulling him to me etc. He never wanted to play toys but he was totally engaged. He would anticipate me pulling him back and take a couple of steps backwards while looking over his shoulder. Cool stuff. For the last 10 minutes, I was pretty astounded. He completed an entire puzzle with no trouble. He played with the toy kitchen and did try to leave it once but was easily re-engaged. We also played with duplo blocks, a little people castle and with mr. potato heads. He rocked it. Just two months later.

Shortly thereafter, my big boy threw his third doozy tantrum while therapists looked on. He was very tired, sick with a cold and very very awful. I was trying to put B down for a nap and holding myself back, which was no easy task. And then it was over basically as quickly as it began. He requested a snack and was chatting and laughing when I came out. That's something that has always cracked me up about kids. When it's done, it's just done - nothing like adults where we continue to stew and dwell.

B just sang Twinkle Twinkle Little Star - a darn good approximation. It's so interesting how these songs are taking off. Imagine a 1 year old who has said a couple of single syllable words suddenly singing a song. That's what it's like.  Fascinating and super exciting!

Snow is coming down here pretty hard. All 4 of us are in for the next 2 days - no therapists, no schedule. It feels good.