I've been holding this post hoping to get more and better pictures but as the season comes to an end, I thought I should just post a few anyway.
Joseph has been participating this spring on the Lightning Wheels Team based out of Children's Specialized Hospital here in New Jersey. The team is one of the two local paralympic sports clubs in the area. Before Joseph started with this team I was a little hazy on the difference between the Paralympics and the Special Olympics. There is a bit of crossover and the two organizations (from what I've seen) have a friendly relationship. The two big differences are in the disability of the athlete and the type of competition at higher levels. The Special Olympics are geared for those with a primary diagnosis of cognitive or developmental delays. The Paralympics is for those with a primary diagnosis of a physical disability. There are athletes who could qualify for both organizations, obviously. A second difference is in the approach to sports. The Special Olympics aims to enrich lives through sport and all are welcome. The Paralympics require athletes to qualify to compete at a high level--this is the organization you see on television immediately after the "Regular" Olympics every two years.
Fortunately for our not-very-athletic family, the local clubs allow kids to participate even if they aren't planning to qualify as elite athletes--or, at least, our local club does. The kids are pushed hard to surpass their personal best records but in a very friendly environment. There are about 25 kids who turn out each week to run heats on the track, and throw discus, javelin, and shotput. Since the age range is 5-22, there are very few even matchups.
Joseph went to one of the three meets this year (we opted not to try for Nationals qualification this year). Races are run against other kids who are the same gender, the same age range (under 11, in Joseph's case) and a similar functional level. Joseph's main competition is a six-year-old boy on his team who also has spina bifida but is able to walk with crutches. His family practices a lot and are very competitive but Joseph managed to beat him in the 100m race at the meet which was pretty exciting.
(Joseph waiting for his turn to do his throws while Rosie hangs out in the front-carrier. The other kids have a blast running around at the practices.)
There are two main groups of kids: ambulatory and non-ambulatory. And they are further divided after that. Many of the kids with spina bifida have excellent strength and coordination in their arms while the kids with cerebral palsy often don't, for example.
The throwing events are done from a platform in an attempt to level the playing field. This picture is Joseph completing a personal best shotput throw.
It's been a really, really fun season for Joseph and it's been great for Eric and I to get to know some of the other parents a bit. I have to say, after a season of one kid doing one sport, I'm not sure we're going to encourage the other kids to take up organized events. The running around felt like a huge drag on family time. But, most likely, we will opt to participate with Lightning Wheels again next year. During the off season the kids have a chance to work with a trainer at a local gym once a week and we'll be continuing with that as well.
I just made a new schedule for myself now that Catherine is sort of, kind of, once in awhile, sleeping or playing long enough for me to accomplish something and the new schedule includes blogging a bit.
We've been enjoying the mild spring days (the few we've had in between the rainy days). One of the best things about home educating is getting to the park in the morning when it's relatively empty and the air is cooler. The kids are really into climbing lately. The top picture here is Gregory (3.5) at the top of a complicated, twisty ladder. The other had been scared of it for awhile and one day he called me over and said, "I just climbed that." I didn't believe him until he did it again. Within five minutes the three middle kids were chasing each other up it repeatedly.
Catherine Rose is almost eight months. We are still working our way through a list of potential nicknames for her but "Rosie" is the current favorite. She is a maniac. Constantly on the move and seldom sleeping. She's pretty cheerful but I spend a lot of time chasing her around and picking "choking hazards" and making sure she is not about to fall on something sharp. Our house currently has no carpeting and she's developing a thick skull. She is happiest when standing but, as you can see, the little boys are always very nervous about her falling--even though this playground turf is much softer than our wood floors.
William is 5.5 and is really struggling to find his place. He continues to swing between extreme sweetness and extreme storminess. He can play equally happily with his younger or older brother, playing elaborate imaginative games with Gregory and building with physics sets with Joseph. He has energy to spare and loves to race around the park on his little bike.
Margaret is 7.5 and really determined to master all the physically demanding parts of the park this summer. She's been working on various sections of the climbing wall.
And teaching Rosie to do the same . . .
And she has now officially conquered the lower set of rings. Eric and I marvel at this since neither of us could do this as kids. She's working now on a much higher set. I've been really pleased to see her patient determination with these since that is not generally characteristic of her personality.
A few days after the rings she made it to the top of the climbing wall.
How does Joseph keep busy at the park? Sometimes by making up imaginative games, often by bird watching. He is an avid birder and recently began a nature journal. His first entry was a starling and he's looking forward to cataloging our entire park and journaling on our trips this summer as well.
Those of you on Facebook got to see a glimpse of our minor medical drama this week. I thought I'd elaborate a bit for those of you interested in exactly why we were so worked up over what turned out to be allergies.
Most kids with spina bifida--about 95%--develop a secondary condition known as hydrocephalous. This is sometimes known as "water on the brain". Basically, all of us have something called cerebro spinal fluid circulating through our brains all the time. Kind of like oil in an engine, I guess. Hydrocephalous develops when the fluid is unable to properly drain from the brain and get backed up causing swelling. This used to be a huge problem and, I believe, the main cause of death in children born with spina bifida. Fortunately, doctors have discovered in the last few decades how to "shunt" the fluid out of the brain using a valve and flexible tubing. The fluid is drained into the abdomen where it is absorbed by the body.
Joseph had a shunt placed at birth and, actually, the first one never worked all that well. Some of you may remember that he had a lump on the side of his head for the first few months of his life. Once Joseph was five months old one of our neurosurgeons basically gave the other an ultimatum and we had it "revised". It was a simple procedure and Joseph was home that day. And, actually, there was a very minor complication that required a follow-up surgery the next day which also went fine and we were also allowed to go home after a few hours. It's never fun to hand your child over to anesthesiologists and surgeons but, as brain surgery goes, it's not so bad.
Since then, we've had no problems with Joseph's shunt, but the threat is always there. The first few weeks after surgery there is always a threat of infection. Later on, there is the worry about the valve malfunctioning or wearing out. And, despite the fact that plenty of extra tubing was included with the original shunt, there is the chance that Joseph will outgrow it one day.\
How do you know when the shunt is failing? Well, that's the tricky part. The symptoms of shunt failure can include headache, vomiting, irritability, personality change, sleepiness, vision problems. Basically, lots of things that could be totally innocuous or easily explainable symptoms in most kids. Some shunt failures present with all the symptoms. But we also once met an adult patient at the hospital waiting for her shunt to be repaired. Her only symptom was "a little nausea". So, sometimes it's when you have just one or two of these symptoms and no other explanation for them that you get the most worried.
Sunday night Joseph complained of pain behind one eye. Normally I'd think, "sinuses." But his head didn't hurt, his nose didn't hurt, he wasn't sniffly or coughing or sneezing or anything. Just eye pain. Monday morning it was worse so we called the neurosurgeon. He said, "It's probably nothing, but . . ." You don't want to mess around when your brain is on the line. He directed us toward our opthamologist who could take a look at the optic nerve and said we'd follow that with an MRI and an office visit and, if necessary, surgery to repair the shunt. Despite the fact that we've been through this before, it's not something we look forward to. Joseph, fortunately, is an incredibly laid back kid. In fact, the fact that he was even complaining about his eye is what had me the most concerned since he never complains (except about chores and school).
Our fantastic opthamologist tacked Joseph on after his last appointment of the day and checked things out. The verdict: he has allergies. Why he has no other symptoms is a mystery to us but we are confident in our doctor's ability to assess things and there was no pressure on the optic nerves which would have indicated pressure in the brain.
I'll try to get up another update soon (with photos!) of Joseph's new chair.
Because we just can't get enough road trips each year, we actually returned to the Midwest in August after having already spent ten days there in June. Eric had a complicated schedule of meetings and conferences so our various travels had to be shoehorned in to free weeks here and there.
Our trip to Minnesota was as delightful as always but I think one particular day stands out for three of my four kids as The Best Day Ever. Grandma Marga has become good friends with a family who live out in the country on some land. Marga has long thought that the two families would get along well and arranged a day for us to all meet. This family has six children and they also homeschool, so we certainly found plenty to talk about. But, more importantly for my kids, this family has: ponies, weapons, and daughters.
Joseph has a long-standing horse obsession and we were beyond thrilled when this family expressed a willingness to do whatever they could to get Joseph on a pony. Joseph spent awhile getting to know the horse.
While Margie hitchhiked with one of the girls in the family.
Joseph was definitely nervous but stuck it out for a few laps around the pen his first time.
He didn't quite get to the point of being truly comfortable up there, but we were proud of him for getting back on the pony a bit later for a second trip around the pen. Though the experience was short-lived, he remembers having loved every second of it and would love to do more horse riding in the future.
Of the three kids who went riding, one was decidedly not a pony fan.
Margie was super excited to pull on a loaned pair of riding boots.
And the oldest girl in the family took her around the pen at a canter.
It wasn't long before Margie was ready for a solo trip and, if memory serves, she ended up riding this pony for quite awhile, kicking it into a canter on her own and even going for a short trail ride with the other girls.
Meanwhile the boys found something more along their interests:
Of the six kids only one was a boy and he is a few years older than Joseph but they hit if off immediately and spent the rest of the day shooting arrows, rubber band guns, and donning WWII-period costumes and staging an elaborate battle in the basement.
Gregory entertained us all with gobs of cuteness.
And Grandma Marga, quite rightly, was pleased that the day went so well.
We were all treated to an amazing meal and stayed until a truly irresponsible hour. Margaret announced, "I'm not leaving until you get me five sisters and a pony." While we can't quite pull that off, I think everyone involved is hoping for a reunion this summer when we are back in Minnesota.
I'm really not one of those "cool moms" who is always doing nifty, creative things with my kids. Really. But once in while I knock it out of the park.
Our parish has a street festival every summer around our patronal feast day (Our Lady of Mt. Carmel). We usually go two of three nights, at least. You know, we have to eat our weight in Zeppoles in order to "support the parish". We buy a few treats and, otherwise, if the kids want to buy stuff they have to use their own money. They generally blow $6-8 between them on those little "party snappers" that make a loud cracking noise when you throw them in the street.
This year they saw the face-painting booth and really wanted painted faces. This was about 8:30 at night on our way home and when I saw that the going rate for simple little designs was $5 a pop I promised that I would paint their faces the next day at home and they could have them painted all afternoon AND at the festival.
So I pulled out my makeup stash (including lots of samples--I don't typically wear bright blue on my face!) and went to town.
I am a little embarrassed to post these pictures for three reasons;
1. This all happened about eight months ago.
2. The pictures are mostly from my phone and, therefore, poor quality.
3. We spent four really, really wonderful days in Wisconsin on this trip relaxing at Eric's dad's lakeside house, getting to know some family we hardly ever see, and attending a fun family wedding. But I don't have a single picture to prove it.
But I'll give you what I got.
An important task before we could leave on this trip was Releasing the Butterflies. Our friend Robyn gave Margaret this great little kit for growing and hatching butterflies from the pupae stage on up. We wanted to wait and get our little butterfly babies once the weather was nice rather than hatching them only to then watch them die in our house. With the arrival of consistent 60+-degree days in May, Margaret was excited to hatch some Painted Ladies.
She was definitely a bit sad to let them go free just before our trip but she bravely brought out her little net and opened it up.
One sailed off right away.
But the others took a little more coaxing before they were ready to explore the wide world.
C'mon, little guys . . . what are you waiting for ?
That taken care of we hit the road early (early!) the next morning and drove 13-hours to Chicago. Thirteen hours of driving when a 20-minute (minimum) stop is required every two hours makes for a pretty long day. But at the other end we were all happy to meet up with our good friend, Brett who had only just finished his last day of his first year at the University of Chicago Law School. Brett generously hosted us for two nights and showed us the sights around campus. Here he is, no doubt, expounding on some complicated legal theory for the benefit of his godson.
Since the University of Chicago is in Hyde Park, home of the Obama Family, we hoped to take a swing by their place. But we were thwarted.
After Chicago we headed to Sturgeon Bay, went to a wedding, let other grown-ups entertain our children and lay around the house reading for a few days before hitting the road again. We drove back south along Lake Michigan and around the other side to Western Michigan. Eric had a five-day conference in Grand Rapids and Brett's parents had generously (very generously!) offered to host the kids and me for the duration.
The kids still talk all the time about what a great time they had at the Swearingens. And, really, it was like kid paradise. Plenty of old toys and books around--Margaret discovered a love for Legos during our stay. A huge yard with some woods. There were, I think, daily tractor rides.
One day we headed into scenic St. Joseph which is a cute town on the shore of Lake Michigan. The town was dotted with pirate statues and a pirate ship play structure. The kids pretty much never wanted to leave.
We never go on carousels because they aren't all that wheelchair friendly and we assumed Joseph would have a dull time of it. But a carousel was on the agenda that day. Gregory stayed more or less happily on "land" while I helped a nervous Margaret choose a horse.
William, very unsure about the whole thing opted for the relative security of a bench.
And Joseph had a blast holding the reins of his "sea serpent". Shows how much we know about what our kids think is fun.
Gregory and William couldn't get enough of the intricate model train set.
And afterwards we hiked up the side of a cliff. I thought I would die. But I apparently had enough energy left to snap a picture of the lake.
One night there were roasted hot dogs and s'mores.
And this swing alone might have been enough to make the trip for these two. Margaret was trying to pull of a snuggly pose. Gregory was afraid she was trying to take him out of his beloved swing.
And while the kids were enjoying five days of Kid Camp and Eric was having a great time at his conference, what did I do? Well, I'll tell you what I didn't do: cooking, cleaning, dishes, or laundry. I played with Legos, read a biography of Clarence Thomas that Brett had so thoughtfully left behind, and enjoyed hearing myself say, "Why don't you go run around in the yard for awhile?"