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.

The good stuff

I think I spend a lot of time talking about how hard and exhausting this whole journey is. And that's definitely true - this is by far one of the most challenging periods of my life. But there are a lot of good things happening around here that are worth mentioning:

1) B man has been sleeping through the night. After a 5-day stretch where it seemed like he was falling back into his old pattern of waking for a couple of hours every night, he has been consistently sleeping for 11 hours or so every night and even napping periodically.

2) Big bro. has been accident-free for almost a week. We saw a digression in potty habits when we started B's therapy. I didn't make the connection but our team did and implemented some strategies. Simple stuff - rewarding him with the EXACT same kind of rewards that B gets (who knew that he wanted to be spun around and tickled too) and not giving him any attention (even negative) when he does have an accident. We haven't had to do the second part because his accidents stopped as soon as we started the new re-enforcement.

3) B has pretty much abandoned his "clutching" behavior after just 1 tough weekend. It's amazing.

4) Transitioning my firstborn to preschool has been nothing but a positive non-event around here. He loves it and I love what it is doing for him.

5) We have a PCA now and hubby and I are instituting a weekly date night. This is sooooo needed and long overdue.

6) Halloween was a success. Both boys wore costumes and there were no meltdowns. We were out for a full hour. B didn't get into it but he wasn't unhappy and handled it very well. Last year, he was pretty traumatized by the whole thing.

7) The obvious one - B is doing great with his therapy and despite all the hard work and sacrifice, it feels right.

8) There are more good days than bad.

I was going to do a top 10 but that exhaustion thing is getting the better of me. More to come, I'm sure...

Time off

Today was our weekly review meeting. Brady's week last week consisted of FIFTY EIGHT hours of therapy (17 of that from Doug and I). Crazy. He had a great week. The results seemed slightly diluted by the fact that he had such a banner week the week before. But we certainly have nothing to complain about. It was a really tough weekend removing his "clutchables" but he seems to have pretty much abandoned that behavior in only a few days time. It's amazing - this stuff really works. One highlight: we had a goal of 1 vocal imitation (word or approximation) per session and he averaged SIX.

Now we even have a couple of objectives for big brother that will make life easier for all of us (example - having him play independently when I need him to vs. when he feels like it). It'll be interesting to see how it works on him - in some ways, he is the tougher nut to crack.

We're still feeling pretty worn down around here though. Our PCA has been hired but we have to wait for a cleared background check so it will be next week or the following before we get any relief there. One of our therapists has pneumonia so we ended up with a couple of "free" hours today. So strange - it was literally only from 2:30 - 5 and it felt like a really long time. It's amazing what you get used to. Earlier today, our senior therapist asked if I was under the weather and then suggested we take tomorrow morning off from my parent training. I guess it's obvious that I'm worn out. So tomorrow I will have 2.5 hours while big brother is in school. I will have to be home for all but an hour of it but I assure you that I can think of many, many ways to fill my time. And I'm looking forward to it. I can guarantee that I will not make near the dent in my list that I think I can.