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.

Roller coaster

Somehow more than a week has gotten away from me since I last posted. Well, not somehow. I know exactly how - there just isn't enough time in the day anymore. So I can already see why this blog was a good idea for me. I can't even remember what happened in the last week - I never would've been able to keep up with B's progress without keeping some sort of a written record.

The best synopsis of the last 7 days would be one big emotional roller coaster. Parenting is that way, isn't it? These days, there just seems to be a larger variance. My highs are really high and the lows are really low. And they happen practically on top of each other.

B has been singing the ABCs... well, doing a really good approximation of it. He has done it multiple times now after listening to it. It's adorable and really exciting. There's a high.

On Thursday, we had B's 3 year check-up at the pediatrician. That visit was a bit of a low. We're sort of in a therapy bubble right now since that is how we spend practically all his waking moments. In that context, B is a total rock star. He is doing so awesome cruising through his programs and we have a whole team cheering his accomplishments around the clock. It's tough when I take him out in the real world and see the the differences between where he is developmentally and where he should be. Going to the dr. is a particularly hard experience because it's already a traumatic place for him. He was really upset just by the weight and height check. Really upset. All in all, it was good news though - he's on track for growth despite the ultra-limited diet he puts himself on. Big relief. The really tough part came when I decided to do a blood test to check for food allergies/intolerances (more on that later) and they called for "back-up". He's not violent by any means but he also doesn't understand language the way a typical 3 year-old does so it's not clear how much he understands of what is going on. So they were taking precautions. He actually did very well. I hated holding his legs between mine and firmly planting his shoulders against the table while they drew blood. He did recover incredibly quickly. It was just a gut-wrenching, heart-breaking, draining experience.  

Another high - big brother grabbed B's hand when we picked him up at school and they walked out together for a bit.

I know there were lots more on both sides - I'm just too tired to remember it.

Tomorrow, we're videotaping the assessment that I did with B when therapy first began - the one where he cried the entire time. I really hope it's another high point. Stay tuned...

Good Monday

I was a little afraid of the post-birthday letdown today. We definitely overindulged the train fetish all afternoon yesterday. He did have a little bit of trouble related to giving up trains today (and a few BIG meltdowns) BUT.... all in all, it was a good day.  There were several huge highlights:

-He brought me downstairs this morning and put my hand on the tv and ever-so-quietly said:  "Mama, show". A 2-word sentence that included mama. Be still my heart.
-Our supervisor did a few assessments today (only 2 months after the last round). One thing she tried was having me stand a little ways behind B and just say his name and talk to him. I said things like "come see mommy." At first, it didn't seem to register (which I believe is what happened last time) but THEN he walked all the way around the coffee table with a huge grin and hugged me. Awesome. AWESOME.
- Later, watching Toy Story 3, he said  "Hi Buzz, Hi guys". I have no witness but I SWEAR he said it.  In general, he did a lot of talking today: "buzz, pizza, daddy, hi"
-one of his bday gifts was a plastic pizza set. Without any prompting, he picked up the cutter and pretended to slice the pizza. Pretend play - wow.
-Another gift arrived today and was a pair of Thomas Rain boots. His face lit up (this we expected) but then he tried to put them on. This we did not - he totally got what they were for. Again - wow.
-Bringing me downstairs and leaning under the couch in an attempt to get me to follow. Buried very far behind the couch was a Toby train. How he knew it was there - I have no idea. But he definitely knew. Needless to say, he got to play with it.

I also had a parent conference for big brother's preschool. All in all, it was very positive and she said he is a joy to have in class. Phew. And he napped today.

Yes, it was a good day.

Happy 3rd Birthday, buddy

Wow - it has been quite a year. B had his first developmental evaluation in December of 2009. This time last year, our biggest concern was that a) he had a cold on his bday and b) he was late talking. Little did we know.

It has been one heck of a roller coaster year. That said, something tells me this coming one could be even bigger for both him and us. Here are some things I will always treasure from the little guy's year as a 2-year old:

His intense love of trains
His awesome laugh
His melodic gibberish language
How cuddly and snuggly he is
His love of jumping (on the bed, on the trampoline, in his crib, on the floor - you name it)
His yummy cuteness - the cheeks, the big brown eyes, the dimples
The sweet way he takes our hand to lead us to something he wants or needs
The way his face lights up at Thomas or Toy Story
The beginnings of basic language emerging
His incredible resilience through a total overhaul of his world
A little bit of insight into how he learns and how his brain works

B - man, I could not be more proud to be your mommy. We love you, little dude!

And here are a few pics from all 4 of his birthdays.

Day #1:

First Bday:

At 2:

 Today: the big 0-3:

I'll take the tantrums

Today was super challenging. Not so much for B and not even because of B. Today was big brother's turn. He truly has done remarkably well through all of this with so many major, major changes in his world. He's growing up and overall I've been really happy with the age and phase he is in now. Today was not one of those days. In my parent meeting this morning, he just could not keep himself entertained or quiet. He sat at the table with us and just kept whining and trying to get attention. After a warning or two, I had to go put him in his room and let him cry. After school, he had some time to play with one of the therapists but he wouldn't comply with taking turns running the show (so to speak) so she  stopped playing. And he cried and followed her around and just generally behaved very badly. It was a delicate balance to avoid giving attention and also keep him from escalating the behavior.

It's very interesting to have your parenting skills evaluated on a daily basis. It's one thing with B - the therapists are the experts and they are the ones implementing his training. I am a bit at their mercy. But with big brother - it takes some getting used to. I do agree with suggestions they have made and it's kind of nice to have help doing a job that definitely doesn't come with a handbook. It's just weird to have someone here observing 90% of my interactions with my kids. There is a lot less rule bending.

On the bright side, B is still plugging along fantastically. There is a LOT less crying and it's fun to watch him rapidly making progress. I'm looking forward to our review in December to hear their analysis.

What a day

A lot happened yesterday but as I went to bed at close to midnight, blogging was one of the things that didn't make the cut.

The day started with an early blow. I learned in our parent meeting that our beloved senior therapist is moving to Australia in early December. I was a little surprised by how sad this made me as my eyes welled up immediately. In a short time, she has become an important member of our family. I have joked that she lives with us. She is here something like 30 hours a week (maybe more) and she is really shaping B's programs, supporting our family and creating a lot of FUN for both boys. She has had a huge impact on all of our lives and will be sorely missed.

Later on, I had a couple of really interesting glimpses into B's learning challenges. I was working with him on matching but the things I was using were a few steps back from what he's currently working on with the therapists. The current technique uses the items by themselves but we used to put a blank piece of paper underneath them. I did it without the paper (not realizing that he didn't learn it that way). He was a bit stumped. When we corrected it and put the paper out, he had no problem. He is completely literal - no substitutions. That's another reason that the intensity is so high. He can't naturally generalize the learning the way the rest of us can.  Another time, the senior therapist was trying out a new instruction (Stand). After focusing on sit for 2 months, he was really confused. He'd stand up out of the chair but then try to sit on the ground because he assumed she wanted him to sit. It's really fascinating. This disorder is very real and he has to work SO hard to learn. So hard already and he still isn't even 3.

But he is learning. I was sitting at the kitchen table last night and big brother was watching Caillou. B had been watching his favorite, Thomas earlier. B came over, took my hand and led me to the TV. When I didn't do anything, he handed me the remote and then said "Thomas". I quickly switched the show and thankfully big brother didn't mind.  Look out - my kids may soon be arguing over what to watch like typical siblings.