School days, School days

School has started, and things are in full fall swing here at the Casa. Ben and I are both having a little trouble adjusting to the new schedule, because it is so busy! We have school on Monday/Wednesday mornings, OT on Thursday mornings, then PT on Saturdays. After two weeks of the new schedule, though, things are starting to get into a groove, and should soon settle down.

Ben’s new school setting is fascinating (both the program, which is kind of new, and Ben’s reaction). Last year Ben went to school for a half hour a week. He alternated PT and OT from week to week. It was a struggle for him to get through the full half hour without a meltdown or just getting so tired he gave up. Things did improve as the year went on, but it was really a struggle. Last year was also all individual, one-on-one time with Ben and a therapist. After this summer, things have changed so much. First, after being in meds for reflux, Ben is actually eating, and eating a lot, and is sooo much stronger because of it. He (as you readers know) was tolerating two hours of therapy a week all summer, so we were really ready for fall. Now, when we go to school in the mornings, Ben is in a group of five students, each with their parents, each under two. There is some “circle time” where we sing songs and everyone is together, then the kids alternate between seeing two different teachers (they work on sensory/cognitive skills), a PT, an OT, and a speech therapist. It’s a little frenetic, and it’s taken awhile for Ben to adjust to the pace. He sees three of these five people in one session, then the next session will see the two he missed. As I watched him over the past two weeks, getting used to all of this, it dawned on me that he’s never been in a group setting like this for any kind of play…well, for anything really. Yes, he plays with other kids his age, but even then I’m right there with him because he isn’t sitting up yet! I am SO excited to watch him over the next couple months…he is just going to blossom. Ben is so close to sitting it’s not even funny. He will sit on the floor in front of me, and I have one finger on him. I am just pressing his spine if he starts to lean in one direction, to give him a little clue as to where to adjust….there is no other support for him at all! He will be sitting independently very very soon. It is so exciting! His social world will expand so much when he can be more independent.

Ben also spends a lot of time right now watching all the other people in the room. He watches all the kids, the teacher, everything…but he is VERY reserved…nothing like the kid we see at home. I’m so fascinated with his reaction and what he does, it’s so interesting to see his world expand and his reaction to it.

There is a new picture below…check out Ben’s first tractor ride (and ignore his outfit…his daddy dressed him that day).

Don’t forget that the Buddy walk is in only one week! You can still go online to donate or join our team. If you have problems or questions, please leave a comment or Email me and I’ll try and help you out. We are about halfway to our fundraising goal, and I think our goal of thirty walkers is pretty close to complete…but we would love to have you join us!!

a new picture is

how much is too much?

I do realize I’m tempting the fates as I say this, but I am happy to report that Ben was the only child in our therapy group who did not cry on the first day of school yesterday. Instead of going to individual therapy this year, we go to a group setting where Ben will see a PT*, an OT* and a speech therapist each session. We go on mondays and wednesdays for an hour and fifteen minutes. He did great yesterday, it didn’t hurt that we open with a song, and the teacher handed Ben a tamborine first, then a pair of maracas. My boy loves music, just like his mama. 🙂
In addition to the school setting, we will be continuing private therapy at the clinic this year. Ben will get an additional hour of PT on saturday mornings and one hour of OT on thursday mornings. It sounds like a lot, but Ben won’t need therapy this intense forever (I’ll leave out the obvious jokes about the very different therapy he may need one day after having me as his mom), and right now it is doing him a world of good…so we’ll see how it goes. I’d rather start out with too much and cut back than think he could be doing more and getting something out of it.
Ahhh back to school. But not really. The view out the window this morning in my pj’s is lovely. 🙂

* PT = physical therapy-gross motor skills
* OT = Occupational therapy-fine motor skills

In which Ben is now one…a long post

It just takes me so long to get around to blogging, what with everything else going on. 🙂 As I posted a few days ago, Ben is indeed now one, and after the flurry of activity, visitors and parties, he is doing alright. Our physical therapy has been switched to Monday afternoons now (from tuesdays). Therapy in the afternoon is an adventure. I have to deprive Ben of a morning nap, feed him lunch early, then put him down for a nap earlier than usual so that I can get him up at two thirty and get to school by three. This seems to work okay, but Monday was kind of a disaster. After talking to the OT (occupational therapist) for awhile on cups and weaning from the bottle, Ben was NOT into doing anything productive with his remaining time. He just sat and cried. I think some of it was tiredness, some was left over from the weekend, and some was just plain stubbornness. The upshot of this is that when the PT (Physical therapist) poked her head in to say hello, he was a mess. We had this PT in the fall, then our day got changed and we had a different PT. Both are excellent, and it didn’t matter too much to us. But Ben has changed so much since fall, and as I was telling her this, she was giving me a look like I had just taken some exotic psycotropic drug, because Ben was crying, limp, and generally NOT looking improved at all. It’s okay, next week will be better, right?
We spend time every day doing “therapy play” with Ben, and at this point, it is all just play to him. I want to keep it that way. I don’t want to have “therapy time” and “play time” at home. When he gets tired, we stop. Sometimes we just do a little bit all throughout the day, and that is fine. Sometimes, I feel like I’m spinning my wheels, and I’m completely overwhelmed because there is so much I need to do with him. Be careful of how he is positioned at all times. Regular cups, not sippy cups (more on this later). Rolling practice, sitting practice…why isn’t he sitting yet! Weight bearing on his arms. And his progress is slow but steady, but leaves me feeling unsatisfied, like I should be able to do something to help him more, and I’m not doing anything right. It’s very frustrating to have so many things to do, and feel like I’m not doing anything well at all. Like his failure to make progress is my fault. I know, I know….maybe I’m just being hard on myself. But it *is* hard.
Ben has been drinking from a cup since we started solid foods with him at six months, and he does a passable job. He is great with a sippy, but recent knowledge tells us sippy cups are the devil and I”m trying to get him better at a regular cup. Sucking on a sippy, apparently, is just like a bottle, and delays speech. Maybe that is not a big deal for some kids, but for Ben it is a super big deal because his speech is delayed already. So now it’s one more thing to worry about. He tries to suck from a regular cup, and I”m trying to work with him on not doing that, it’s actually fascinating…because you don’t think about what it’s like to teach someone to drink until you have to do it. We get lots of milk everywhere. The OT also suggested teaching him to use a straw, which seems like a good idea. There are lots of ways to do this, and we’ll try some of them. I want to start with a straw because at least then he can use his own cup without me worrying about him dumping milk all over his head, or worrying about the lurking evil of the sippy cup (which he is really very proficient at). It’s very overwhelming to think about all of this, and I’m worried that it’s all very confusing for people to read all about it. But this is our day…me thinking about what I ought to be doing with Ben, obsessing over it, worrying that I’m never doing enough.
In other news…
I get a lot of people saying “you must be so happy” about Ben turning one…and I AM. But again, I am so overwhelmed with feeling about it that sometimes it’s easier not to think about it. Thinking about the fact that he is still here means that I think about how much longer he will be here, and what will happen if he’s not, and I don’t like to go there. So I just stay in the now. I think more about day to day life with Ben than his heart problems. I think more about what we’re doing and what we will do today than the past year. And I don’t think a lot about what-if’s, or whys or hows. I don’t like to think about Ben making it, because it makes me remember how scared I was when I thought he wouldn’t. I guess the upshot of all of this is that I am realizing most of all, on this one year birthday marker, that I have really achieved what I set out to do (and I think Scott has too)…we are LIVING with Ben, and doing what he needs. That is very different than watching him, thinking about tomorrow or yesterday. So yeah, I am happy, I’m sick with happy…but I’m happy every day I’m with him…watching him try new things, eat new things, do new things. I’m even, in a sick way, happy when I have to get up at two thirty to deal with poop and spit up (as I was last night), because afterwards I get to cuddle him back to sleep, sit in a rocker and think about all the things I usually shove out of my mind, and smell his hair and listen to his breathing. You can’t put that into an answer to a question like “are you happy”, because there are no words to describe it. Everyone has something like that in their lives, I think…something for which there are no words. Ben is my “no words”.
And on a lighter note, there are birthday pictures if you