Archive for September, 2007

Yet another buddy walk update

September 26, 2007

I got this in my Email today:

> This Friday, September 28th at 9:22 am (EST) NBC’s ‘The Today Show’ will
> broadcast a LIVE 4-minute segment featuring NDSS National Buddy Walk
> Spokesman John C. McGinley, and NDSS Goodwill Ambassador Chris Burke in
> honor of Down syndrome awareness.
> The segment will discuss their involvement with NDSS and the Down
> syndrome community, as well as highlight the Buddy Walk program and
> National Down Syndrome Awareness Month, October.
> Please be sure to tune-in to your local NBC station at 9:22 am.

Buddy Walk Update!

September 24, 2007

Only one week left until the buddy walk!!!! It’s time to sign up to walk with us, if you haven’t yet. Registration to walk is only open online through friday. If you have issues with online registration (the site isn’t QUITE as user friendly as it wants to be), you can do onsite registration. It doesn’t cost extra, you just take care of everything there instead of on the computer.
If you still want to donate to Ben’s Buddies, you can do that through the end of October. Again, you can do this online, or you can send a donation to us and we will take it to the walk.

I want to thank everyone who either donated or is coming to walk with us. The difference that support makes to families affected by Down Syndrome is overwhelming. I know that Scott and I would be in a very different place on our journey as Ben’s parents without all the support and love we get. If you’ve never been to a Buddy Walk, the energy is amazing. The kids alone will put a smile on your face for weeks to come. I look forward to seeing you there if you can make it.

The address for our team website is

See you at the walk. 🙂

School days, School days

September 21, 2007

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 here

September 12, 2007

Today, I present, for your entertainment, pictures of The Pudding Incident.

See, Ben’s OT (Occupational therapist) suggested letting Ben play with pudding on his high chair tray. This is good for his sensory skills, and also we could encourage him to bring his hands to his mouth; thus encouraging him to self-feed. We’ve been working on it. The other day I couldn’t help but take pictures. I mean, putting my hands over Ben’s to “get him” to do anything is usually disasterous. He wants to do it HIMSELF…with NO HELP. The results were just a little messier than our normal mealtimes:

Look here

September 10, 2007

“Oh, are you pregnant?”

I cannot tell you how many times I have heard this statement in the past two months. Prior to that, I was willing to accept that, okay, I was less than five months, and it took me a long time to show when pregnant with the tiny man, so okay…maybe I didn’t look pregnant. But now? Now I”m seven months. I’m huge. My belly has actually grown beyond the … uh … other frontal appendages I sport, and that’s saying something, because the girls? They are impressive. I am the size of a small duplex. And sometimes when I am talking to someone new, and I mention “when the baby comes”, they say to me “Oh, are you pregnant?”

I know that many people, me included, believe that it is really really bad to ask anyone if they are pregnant, or when they are expecting. Mostly because you just never know. I have made this error, after garnering what I *thought* were conversational clues indicating the status of a friend’s uterus. It was a friend I hadn’t seen an awhile, and while she didn’t look any different (really, she didn’t), I thought I had gotten from the context of the conversation that she was pregnant. And I asked her when she was due. And flames shot from her eyes and singed all the hair off of my body as she said in a voice resembling some satanic demon in a horror movie “I’m not pregnant”. The “bitch” at the end was not stated, but implied.

But me? I have a basketball in my stomach right now. I think I look pretty damn pregnant. Apparently other people think I have gained an inordinate amount of weight this summer, and I’m just living the high life, sitting on my couch eating boxes of Hostess while entertaining Little Debbie simultaneously. Because, PEOPLE, I am the size of a house.

And when someone says to you something about “when the baby comes”, it is just as bad to say “oh are you pregnant” to a seven-month-pregnant woman as it is to ask one who is not pregnant when they are due. The former will go home and cry all afternoon, while the latter will commence Hari Kari on your person. Really? It’s no different.

September 9, 2007

Sometimes, in a world like ours, you just need to cut loose a little bit. Check Ben out here

Because I"m a sap, but a cultured sap

September 6, 2007

Only the technology changes

September 6, 2007

When I was little, my dad used to occasionally pull out his guitar at night and play for me. And he took requests…I liked a lot of John Denver in those days, but dad also played a lot of Gordon Lightfoot, some Peter, Paul and Mary, and other standards. I loved this. Sometimes we would listen to reel-to-reel or eight tracks on his old reel-to-reel player, and he would tell me about the days when he used to DJ.

Well, only the technology changes, the music and activity stay the same. Ben likes to sit on my lap as we wheel through the Itunes library and I sing to him. Most of the music is the same. We are listening to BJ Thomas right now (no dad, he doesn’t like Mighty Clouds of Joy like I used to), and we’ll listen to some Johnny Cash after that. I suppose later there will be a little Blue Rodeo, maybe some Dave Matthews or Dar Willams…we may go out on a limb and hear some Indigo Girls, but we like to stick to the classics. We’ll round out the evening with my own version of some John Denver as I rock him to sleep.

Oh man does this kid like music.

how much is too much?

September 6, 2007

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