Wednesday, February 24, 2010

I've Got His Autograph!

Charlie while squiggling a line across his paper: "E-F-A-O-P... Charlie!"

Monday, February 22, 2010

A Calvin Story

Everyone has a Cavlin Story they could tell. He is just a child who makes things happen--who does all the funny, cute little kids stuff that makes people smile warmly.

Here is a story from yesterday.

At church we do a short children's sermon before we get going with the regular teaching. Our pastor, Peter, was giving an illustration, using toys from the nursery (which made it extra interesting for the little guys) about a boat that was in trouble and got broken, then another boat came along to help fix the broken one. The two youngest, Calvin and his little friend India, were standing right next to Peter, "helping" with the illustration (as only almost 2-year-olds can), and ignoring the finer arts of what is socially appropriate during a sermon (as only almost 2-year-olds should!).

When the illustration was finished Peter explained to the children that there is a very big word that describes what just happened with Pooh Bear's boat. "A word that means to fix something that is broken is Reconcile," he said.

Calvin, who has no fear of trying out big words, and as if on cue, repeated proudly in his little voice, "Weconcile! Weconcile!" Such amazing conversation coming from such a little person. People were, of course, smiling warmly at our little friend Calvin. Community is an inclusive thing, here.

Later in the nursery, we discussed what it means to fix broken feelings of our friends or siblings if we have hurt them. And you can bet that at home weconcile, er, I mean reconcile, will be our new vocabulary to instruct the boys when they need to make up. If he can say it, he can learn what it means.

This is such a sweet time.

Sunday, February 21, 2010

I've been occupied

I admit, I have not blogged of our recent family fun, because I tend to blog in the evening after the boys are in bed, and before I drag myself to the kitchen to do the dishes.

But you see, the Winter Olympics are on! And, while I try to ration the use of television in our home, all bets are off go the Winter Olympics. So yeah, there is little blogging to be had. (I'll admit, the only reason I'm blogging this evening is because it is Ice Dancing, which, I don't know, is just too frilly for me.) I am glued to the tube these two weeks. Living, enjoying, even envying the sports, in sound bites and heavily edited media hype. Oh well, it is as close as I can get.

The boys had a chance to watch a bit of the figure skating the other day, which has resulted in hours since spinning and leaping in the living room.

I miss it. I miss living in the Sierras. I miss the snow and the sports. It's funny how you walk away from something thinking "Good Riddance" only to realize what you really needed was a break and perspective. Well, I have plenty of perspective, but no way back to it.

I was a skier. A cross country skier. A hardcore one. A young skier with aspirations. I love to watch these athletes in these Olympics living a dream I dared to dream myself once.

It's funny. So many of the athletes are so very young. Some of them show great poise and mental toughness. Some are nervous, unsure, or have a self confidence that is, I don't know, unattractive--too self-y. As I watch, my "perspective" keeping me company on the living room floor, I think how much I would like to have had the life experience and, dare I say wisdom, that I now have during the years of training and competition. I think I would have enjoyed it more sincerely, lived it more fully, and fought through the tough parts more steadfastly.


Skiing is something that, living in our rural, coastal area, I don't know if I'll ever get back to. I'm lucky to get to the snow once every couple of years. But there is another sport I've loved. Loved because of the mental space it allows, the rhythm it imparts, the terrain that is... well, like balm. Cross country running.

I may not have the body or the level of fitness I once had. I may not have the time to block out for hours of training. But I have perspective. And, as a very busy mom, the desperate need for solace. So, I've taken it up again, and it's going very well. With any luck and some perseverance, I'll do a race this summer.

Ha! You know, as a mommy, when I am out jogging and my legs are burning (and my thighs are bouncing!), I just start to think of labor and child birth, and I know beyond any doubt that if I can do that, then I can jog another mile easy!

Ah, perspective!

Thursday, February 11, 2010

IEP Update

Been in a bit of a blogging lull. It is certainly not for a lack of events in this household! I think it is a little bit the dreary weather, the fact that I haven't had time to take a walk in a couple weeks because of time crunch, not that I could as our stroller has a flat tire, and the whole time crunch doesn't help us having any time to fix it.

Deep Sigh.

Well, on to the IEP! We had our second big IEP meeting a couple weeks ago. It was wonderful! So much better than the first one.

To begin, Charlie has proven to everyone what a smart little boy he is. Specifically, he has proven that he can thrive in an environment with typical peers. This helps everyone to feel like it is appropriate for him to have interaction with typical peers at the children's center. No one was pushing us to put him full time in the Special Ed school this time. In fact the consensus was that the split program (attending two different preschools) is working well and is a positive thing for Charlie. What a relief. (Also, the main person that was putting up a stink about it at the first IEP meeting no longer attends our IEP's).

Second, Charlie has proven that he is making great strides at the Special Ed school. He is really benefiting from all of the therapy, intensive instruction, and special needs know-how of the Special Ed staff.

So, the plan is to have him in both programs for the semester, then reevaluate at the end of the school year. We have made it known that we may choose one program over the other at that time for the sake of making our lives a little more simple. I wish there was a middle option, but there is not, so we shall see. Charlie seems to take his busy schedule in stride, but mommy suffers a bit from overwhelm.

Charlie's goals for the next year include potty training, pre-academics, self care, and we have added social/emotional components to encourage him to interact with adults and peers at school (he is terribly shy, which is another post I need to make).

His speech therapist reported that he has made great progress (but we knew that!). She is going to be doing some testing with him as she feels she does not quite know the full scope of his language capability as he is difficult to understand, but also very quiet. She will then form a better plan for his therapy for the next year based on her findings. He continues to receive speech therapy weekly at his Special Ed school.

The Occupational therapist also reported that Charlie is making great progress. She will continue to see him weekly as well for 15 minute intensive instruction. She also give the classroom staff a box of fine motor stuff to work on throughout the week.

By far Charlie's greatest challenge physically is his fine motor skills, which include hand movements and also speech. (Gross motor is lacking as well, but just is not as big of a deal in the long run. He seems to get around, even if he does have to crawl up and down stairs in his hands and knees.) While he struggles very much in these areas, he continues to gain new skills and strength. I am very proud of him!

Charlie will continue to see the Speech and Language Pathologist for feeding issues, although he is doing so well I think we will soon graduate from her care.

Finally, we were able to arrange for a shorter bus ride in the afternoons. We now pick Charlie up from the High School as the bus comes straight from his Special Ed school in another town to the High School in our town to take on more kids. So, Calvin and I take a quick ride to the High School and fetch Charlie from there every Monday, Wednesday, and Friday at 3pm. We get to visit with the kids from the special ed class at the high school. There are several who have Down Syndrome and who give me great hope for Charlie's future. They are very capable, comfortable, and though they seem to have varying degrees of function, they all seem very, how do I put this, socially savvy. As in, they all behave like regular teens despite there disabilities. Anyway, the new bus routine knocks over an hour off Charlie's bus ride, and we are very pleased to have him home with us for that hour! Yeah!

Well, I think that is it for the IEP. We have a follow-up IEP meeting scheduled for May just to check in and see if we want to change things at all. We shall see, but for now I am satisfied. That feels good.

Thursday, February 4, 2010

A Healthy Charlie Update

We've been MIA in blogland lately because, well, we've been sick. If it isn't the boys it is me, and just this morning Raymond started in with that lovely Humboldt Hack.

But despite all the facial goo, sniffles, and coughs in the house, Charlie had his Well Child Exam yesterday anyway. After all, he is not that sick. Just a regular wintertime cold.

And, he is healthy! I feel so very blessed. I hold so many children with Down Syndrome, and their amazing families, in my prayers constantly as they live through so many medical journeys. I am deeply grateful to have a boy with Down Syndrome, who really, could not be a healthier boy. He is strong. He is growing well. Just the other day we had his IEP (which is another update I need to catch-up on), and we were able to check the box "Excellent Health."

So, on to our appointment. The stats are: 35 pounds, and 37 inches. As my mom remarked, "He's nearly round." Oh, and he is! Such a round, wonderful snuggle-bug. On the growth charts it makes him 43% for weight, and 4% for height. Luckily, those don't really apply to him, as on the Down Syndrome growth chart he is quite average. Between 50-75% for weight, and between 75-95% for heigh. My very average, very healthy boy. (Average is good!)

Our doctor remarked that he seems to be doing well. We talked about potty training. The doctor said even if we did nothing, he will learn, so we can relax a bit in our worry about that, I guess. He is doing well, by the way, but it sure is slow going.

We talked about his reflux, and all agreed that it seems to be much better than when he was younger. We barely hear him reflux anymore, and he only spits up if he has overdone it at a meal. We had taken him off his medication months ago because another Down Syndrome mom had suggested it may be contributing to his, um, horrible, disgusting, awful everyday bm's. The elusive "diarrhea of toddlerhood" for which we received a diagnosis last year. Well, the medication seems to have been part of the culprit (although the diarrhea began before he started taking the meds... whatever), so we will just keep him off of it.

We got a blood draw order for his yearly CBC and TSH. I took him to the lab after our appointment, and the woman found his vein on the first try (that's a first). Charlie winced, but did not cry, and I thought he was drifting off to sleep during the draw (which took a couple minutes because his blood seemed very thick, or at least slow, if that makes sense). Anyway, we wait a couple weeks for the results, but I expect them to be perfect.

I will update soon about our fabulous IEP meeting. Yes! It really was pleasant and productive.
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