Poor tired boy

When I came home from a preschool pizza party, this is what I saw. Poor sweet boy - he was supposed to be doing some training time with Daddy from 5:30 - 6:30 and he put himself to sleep right in the middle of the living room floor. I transferred him to his bed and he hasn't made a peep. It's easy to forget but after all, he is only 3.

Under the weather

Poor little B has been sick. It's always hard when your little one is suffering. What makes it particularly hard with B though is deciding whether or not he is fighting therapy because he doesn't feel well or if he just doesn't want to cooperate. It's tough to be black and white with this one.

On Monday, he seemed perfectly normal when I left to take big brother to get a cavity filled and for our "mommy date". When we came home around 12:30, B was asleep on the babysitter with a 101 temp. So, he got a nap and some motrin and the afternoon "off" from therapy. When he woke up, he was fine and ate a normal dinner etc. But around 6 pm, he just wanted to snuggle and ended up falling asleep in my arms for another 45 minute nap. We canceled his next morning therapy session but kept the afternoon one from 2:15 - 6 on schedule. He struggled through it but not really any more than a lot of his sessions.

And that brings us to today. I had to wake him at 8:15 (really late for him) and he was clingy but had no fever or symptoms. I was worried to leave him but gave him a dose of motrin to be on the safe side and headed out. I called after an hour and was told he was doing okay. Needless to say, I was really anxious to see him when we came home at 1. Unfortunately, he was crying in the basement when we came in so I had to refrain. For almost an hour, I listened to him sob. We made lunch and a batch of cupcakes and tried to be distracted. Finally, I could take it no longer and went downstairs to check on him. He snuggled in immediately. And immediately, he was able to pull it together. So who knows? Maybe he still felt kind of crummy. Or maybe he felt fine but just didn't want to "work". I really can't blame him. I ended up sitting with him in the rocking chair and he fell asleep for 1.5 hours and missed the first half of his last therapy session. It was nice to be able to baby him a little. It's just so hard to know what to do - when is it okay to baby him and when is it a disservice to his progress in therapy?

This is a really tough one for me. When big brother is sick (even with just a runny nose), he typically lays on the couch all day and gets to eat and watch whatever he wants. B-man is no longer afforded the same luxury. B also has always been so much more of a trooper when he doesn't feel well. Last year, we flew to Texas and spent over a week there only to find out AFTER we came back that B had a double ear infection. This is one of those times that I really, really wish he could just TELL me how he feels so I don't make the wrong decision and push him too hard. Nevertheless, I guess I'll swallow my mommy guilt for now and hope he is 100% tomorrow. And I hope that someday he'll understand how much I wish I could make everything easier for him.

Giggles

Here's a clip of B cracking up at a video of Cookie Monster on Youtube.
http://www.youtube.com/watch?v=ITxGM8MR1Ek
Aside from how adorable I find it, here is what I see:

1) he looks up twice when I call him (great eye contact progress) - he even smiles. And the light is ON in those big, beautiful eyes
2) the laugh is genuine and he is amused - this is NOT a stim (autism stereotype)
3) he's rocking and twitching his fingers some (these are very definitely autism traits)
4) he is pretty successfully navigating the Ipad which he figured out all on his own (go B!)

This is what I do and have done for the last year... everything is in terms of autism v. "normal"... progress v. developmental need. I can't help it - so much of our recent life has been dedicated to assessing and analyzing his behavior and development.

I hesitated whether to even post this. I know many who read this do not know him personally. And well - in it, he looks like a kid who has autism - the rocking is a dead giveaway. I don't see him that way until I put him out there in the real world and see him through others' eyes. I don't like it. I want to protect him and us from others perceptions. He is so much more than his disorder. So, so much more.

But I am posting. The reason for my blog is to document our journey and I think keeping a video record will be helpful. And he really is super adorable in my humble opinion. Plus, I can't wait to look back in surprise at how far he has come.

Mama

B's saying Mama. How long I've waited to hear it. One problem: he says it while protesting and crying. This morning, he was having a tough time. Maybe it was the Monday effect. Who knows? He was crying and having tantrums a lot and generally not having a very productive therapy session. As I've mentioned before, I have to remove my attention when he's like that so that he understands that good work = more rewards, time with mom etc. So this morning, I feverishly cleaned my bedroom and rode the exercise bike downstairs while listening to him cry (extremely clearly) Ma-ma, Ma-ma, Ma-ma. Next time, go ahead and pull my heart right out of my chest, little man.

Yes he does still need a nap

This was taken at 6:15 tonight. I will be shocked if he is down for the count but he has been in bed now for 2 hours, fully dressed, no dinner. I have a bad feeling about the rest of the evening though.

Poor little guy. He has had a pretty tough 24 hours. He is doing SO well with his programs that guess what? He gets rewarded by making things much harder. It makes sense - truly it does. He is at a 95-97% success level. The sweet spot is somewhere in the 80-90% range. If it's too easy for him, then we're not maximizing his learning. Keep in mind - he has a lot of catching up to do developmentally. It is in all of our best interest to move him along as quickly as he can handle.  So away we go. The biggest change introduced this week has to do with his demeanor during his programs. Currently, if he whines about it but still does it correctly, it counts. He still gets whatever was promised to him. Now, if he whines or protests in any way, it will be considered an error. So this means that he may do exactly what the therapist wants him to do but he doesn't get his trains, shows or whatever was promised because he whined in the process. He's going to be beyond frustrated. Just when he thinks he gets is all figured out, we change the rules of the game. Again, it makes sense. Even I can see that he memorizes patterns a lot of the time rather than truly learning. He tries to figure out the quickest way to get it done and move on. So, this is going to be good for him in the long run.  I'm just dreading how hard it's going to be until he does figure out the new rules.

He had a somewhat difficult 2-hour session this afternoon where our supervisor tried this out. Lots of crying. Not as bad as last night, but lots of crying. We then had a good afternoon and I was even able to work with him a little to catch up. But when I took away the Ipad at dinner time, he lost it. After he finally calmed down from that, I put him in his chair in front of a video and he crashed almost immediately. Poor little dude. I hope he does sleep all night. He's going to need some extra sleep. Tomorrow is a light day - only 1 session from 12-3:30 but next week may be a tough one.

They can't all be good days

Today was a pretty good day for me. I had some time to catch up with a friend, some errands sans kiddos and fun observing my big boy in his "muscles" class when I picked him up.  B was in pretty good humor and jabbering up a storm. Wednesdays are big days for him schedule-wise. He has a session from 8-11:30, 12-2:45 and 3-6:30. It's the only day now that he has 3 sessions in a row.

It went a little sour later in the day though. For whatever reason, my big guy thought it would be fun to dump an entire bowl of (thankfully dry) cereal on the carpet and then refuse to clean it up. Discipline is not my favorite part of parenting but it's especially un-fun when there is an audience. It's probably good for both of us - I am keenly aware that I need to follow through with everything I say. But let's just say I'm really glad we didn't have this therapy when he was an irrational 2 and 3 year old. It's still not fun - but better than it would have been then.

B's 3rd session was basically disastrous. I have no idea what happened. He started out okay but spiraled downward and cried/sobbed/freaked out for the better part of 3 hours. His therapist wasn't really able to get anything accomplished and neither of us could determine what to do with him. He hasn't napped since last Friday and that probably played a part. Plus, he may not be used to the long days anymore. Hopefully it was an anomaly. But he was a wreck and now I'm pretty spent. I will never get used to watching him suffer. He's sleeping soundly now... hopefully tomorrow will be a better day.

Redefining normal

We're only 2 weeks in but so far, the new schedule and routine is feeling a lot more feasible. My parent hours were reduced from 10 hours per week to 5 and boy is that a weight lifted. B has the same number of hours but they are spread out differently. He used to have 3 days in a row of 10 hours of therapy. Now, he only has Wednesdays that are that long and is done at 3:30 on Mondays and Fridays and even has a nap time built in for Tuesdays (which so far he hasn't taken advantage of).  I think both he and I are feeling much less worn out.

The biggest change though has been in big brother. He has adjusted to this new way of life for us. It's pretty remarkable. He now carries on a lot of the time as if they aren't even here. The other day, our senior therapist was working on her computer at our kitchen table for a couple of hours. He played right there with his cars and all his crazy imaginative dialogue and never really required attention from either of us. This is the boy I know. He has always had an amazingly long attention span and pretty killer independent play skills. And it kind of went out the window when we started therapy. It was too much for him to handle all of that attention getting lavished on B without demanding the same. It was understandable and I tried really hard to play with him as much as possible. It was beyond exhausting. Don't get me wrong - I do really love and treasure our play time together. But unfortunately, I am an adult and I do have other responsibilities and things to do. And now I can. At least some of the time.

Our PCA is here regularly - probably something like 20-25 hours a week too. Hubby and I have a regular "date night" and I even have a couple of hours to myself to run my errands or do things I need/want to do. Tomorrow, I am meeting a friend for coffee. I don't remember the last time I've done that.

I still find myself wolfing down a sandwich in the car with no other time to eat or facing SIX loads of laundry. And I'm still really, really tired a lot of the time. But all in all, it's much more manageable. It's nothing remotely close to normal - it never will be - but I think I am starting to see how we might get used to it.

Quick therapy update: B is still doing great. We really didn't see any regression or major adjustment after his holiday "break". I'm pretty surprised. Pretty relieved. Pretty proud. We've introduced a couple of new programs: sorting and receptive 2d labels. He picked up the sorting immediately and didn't waste time putting things in a pile 1 by one. He does it by the handful. The receptive label programs involve showing him several pictures or objects and naming 1 and he has to pick that up and hand it to the therapist. This is a biggie. His lack of receptive language was my biggest autism red flag. He didn't seem to understand anything we said. But he's doing fabulously with this. I know he couldn't have done it a few months ago. I can see a major difference in that area. He now knows what I mean when I say things like "go", "lunch time", etc.

And he has become a complete Ipad addict. He has figured out the touch screen pretty well and can navigate it on his own to some degree. Right now, it is pretty much a personal youtube delivery system for all of the videos of Thomas, Elmo etc. that he so loves. But I can see huge potential for this in his future. What a different world these kids are growing up in.

Bring on 2011

So we're getting back into a routine around here. We had a mostly wonderful holiday vacation in Texas (I say mostly only because there was some sickness and therefore not 100%). I also had a bit of a hard time totally relaxing because it was in the back of my mind that we needed to keep B on track and prevent him from slipping and having too much trouble adjusting back.

And now we're back. So far it has been pretty good for the most part. We've been able to ease back in without a fully intense schedule these last few days. The little guy is a bit "off" as far as sleeping patterns and he has been a little clingier but he's doing far better than expected. I think he even missed it. We'll see how the week unfolds.

And now it's 2011. I don't think I've ever been so happy to see a new year. 2010 wasn't all bad - we celebrated our 10 year anniversary with an awesome vacation, our big guy crossed over from the terrible 2s and horrible 3s into what so far has been the wonderful 4s and there were plenty of blessings. But it was a year filled with ugly things like autism and cancer and far too much stress. And I'm ready to move on to brighter pastures.

Right before we left for vacation, I had the opportunity to observe a little girl who is about a year and half into her therapy. It was inspirational. She was a darling, social and *almost* typical soon-to-be 4 year old. Her mom told me that she just started talking 6 months ago. And boy is she talking. I had a lovely visit playing with her and watching her therapy session.  I saw B in her. I saw what a LOT of hard work, some luck and the right kiddo can do. This is going to be a big year. I have to believe it can only get better from here. So long 2010...bring on the new year.