Saturday, May 26, 2007

IEP Analogy collection: A Plea

As we enter the thick of the IEP season, especially if your kid is transitioning to a new school (why do they put those off to LATER?), I thought it would be fun to have an "IEP Analogy" collection. Let me know the link to your favorite "An IEP meeting is like..." or "An IEP is like..." (or your local equivalent) blog, article, whatever, and we can all have a good laugh. It will keep us all from screaming.

Thursday, May 24, 2007

Views of my garden

Welcome to my garden. We hope you enjoy the scent of spring roses!

When we moved into this house, there was no garden. The people before us had two large dogs, and when you have two large dogs in a fenced yard, there's usually not much left. The garden actually blooms in waves. It starts with crocus and early daffodils, then opens out with forsythia, later daffodils, and tulips that fade into lilacs. The roses are next, with my Sarah Bernhardt peony and the mockorange. The yard is filled with wafting perfumes. I chose most of the roses because they have a mass effect now, but also continue throughout most of the summer with "pops"- that is, a few flowers all the time. The lilacs become a green backdrop to highlight the rose blooms. I have some iris that come out just before now (to fill the gap betwen lilac and rose), but I need more. I lost several across the back of the yard when my fence was damaged in Isabel. I've also put some poppies in, but they don't last long. I used to have blackberries to line the side, but last year I lost them- I think the folks next door used weedkiller (the blackberries are thornless, but the raspberries are not, and they probably got a few vines on their side of the fence.) Next will be a spirea, and the raspberries will be blooming- not as well as usual, because of the strange and suspicious "blight" from last summer, but the raspberries are at least tryign to come up. Considering the price of raspberries, you'd think free ones would be welcome, but... no accounting for tastes. Anyhoo, the bee balm will be out about then, too. then the daylillies should start, and the finally the dahlias and morning glory. Fall should have another round of mass effect from some of the roses, too. For winter, I have the hollies and winterberries.

The garden is also designed for other scents, textures. I keep thyme and mint throughout, so it will smell good as the boys run about. I have some other shurbs not famous for bloom, but for foliage; my purpe dragon plant, a verigata, sedum. the poppies have added an interesting texture, I wish they bloomed longer.

Lately I haven't been able to get things done in the garden like I would like. I have a lot of mulching to do. More weeding than I could ever do. The virginia creeper is taking over the fence. At least the boys like dandelions and clover!

I used to like to pictures of Joey in the garden. I still like to take pics of the boys in the garden, but when Joey was little, he seemed like a little flower fairy. His little fingers would pluck at the roses and the grasses. He sat up by himself and squealed himself silly while his daddy made faces and funny noises. He loved to crawl through the grass, exploring this new little world full of life and springtime. He never liked to look up. The sky is a big thing- the world is a huge space.

Andy was afraid of the garden itself. He didn't want Mom and Dad to leave him in the grass, The world, even in the garden, was too big. But he soon discovered that outside was someplace full of wonders- especially birds. He looked up at them and pointed to them like Joey never did. He discovered bee-chasing. He discovered ants. The world around him was full of living things!

It always strikes me that they were noth attracted to the life around them, even if different ways and forms.

Once Upon A Time

Ten years ago, on this day, I was getting married to the most wonderful, huggable, laugh-and-enjoy-life guy in the world. Our ceremony took 11 minutes. We wrote it ourselves. The party lasted about five hours before moving to the motel, where it lasted another four hours. My grandfather walked me down the isle. My other grandfather actually had some cake for the occasion. Both are now gone. It was the last time I ever danced with my brother. For our "first dance" as husband and wife, we chose "Touch Me" by the Doors. The shot of us dancing is still my favorite picture of us.

Nine years ago, on this day, I was opening boxes and trying to get the kitchen settled in our new house. This house. Two years later, we could not have been able to buy it. The torn-up mess of a yard is now landscaped and full of roses, and usually happy boys. The kitchen cabinets and counter desperately need replacing. Kitties still twine furry bodies around the spindles in the dining room.

Five years ago today, I was nursing my firstborn, my Joey, often while watching Ground Force or Changing Rooms on BBC America, sitting in my grandfather's chair. My grandfathers never met Joey. Neither has my brother.

Four years ago today, I was at Ocean City with my husband, eating Thrasher's French Fries, Fisher's Popcorn, and Dolle's taffy, while playing so much at Marty's Playland that I actually won a big prize: a Christmas Goose. It was teh only time we have been together overnight, just Allan and I, since Joey was born. He stayed with Mom, and they had a lot of fun having a weekend slumber party.

Three years ago today, I came home from the hospital with my Andy. I was a new PhD, only a week and a half before. Again, we were nursing, but this time with less TV- I had Joey to keep my eyes on. I managed to do a lot of needlepoint.

Two years ago today, Joey had 25 words. Andy had been walking for two days.

One year ago today, Joey was singing "Waltzing Mathilda" (if you could make out the words at all), spelling his name, and dreaming of the Beach. Andy started speaking in sentences.

And they lived happily ever after.

Wednesday, May 23, 2007

Why God Made Joey Autistic

Because I just love abfh, and we seem to be having a conversation going... but I've been reminded of this question a lot lately. Note that I said "reminded of", not "thinking about."

But why go traight to the point? That wouldn't be any fun.

We were back at Kluge today- not for Joey, but for Andy. Andy has been doing some things that are very unusual and worrisome- like sudden meltdowns and violent temper bursts, echoing, and toe-walking. He's having trouble with articulation and sensory integration. I have him signed up for speech therapy and he's in therapeutic listening and some OT each week. We wanted to be sure this was all he needed.

The conclusion is that the articulation, motor planning, and sensory problems are all resulting in frustration. He's interacting well and has solid language, if you can understand him. IN other words, he's neurotypical. I just suck as a parent.

On the way home, there is a store that I frequent- when I was living in Charlottesville, I was there WAY too much, and got to know some of the salespeople very well, including my friend Mary. We stopped on our way home to say hi, and I told her about the trip.

Mary is very dear to me. She is a breast cancer survivor, and even in the worst of it, had time to listen about my dissertation, then my kids. She's a very sweet, caring person, and I love her to peices. However, she did say something- and says it most times I see her- that always makes me blink: "I'm sure God has a special place for you in Heaven!"

My first thought is always, "Why?"

My second thought is the reminding of that immortal question, "Why did God make Joey autistic?" It is a question that hung in the air when I was tracking down a Sunday School for Joey, and bounces about when I talk to religious friends. I have no answer for it. I have no idea. I haven't been reading God's mind lately, sorry. He's been sending some hints, but nothing simple seems to be in store. That's a good thing. I would like to think part of the reason he is autistic is what abfh says she is here for: "to kick our society's prejudiced ass." As important as this is, I certainly hope he is here for so very much more. What I have learned from Joey seems to be just a bonus along the way; I am honored to have been blessed with Joey and Andy, and may I be blessed with more.

Perhaps more interesting to me is the question, "Why did God make Andy NOT autistic?" I have no more answer for this than I have for the former question, and for the same reason. I talk to God a lot, but He doesn't tell me everything, and nothing straight out in words. Words are, after all, a very human invention, and convention. A wonderful, useful invention; but human all the same, with human limitations. Trying to use words to talk about God with a literal-minded person is often futile, because they can't understand language used on the slant. Personally, I hope Andy is also here to kick prejudice in the shorts. But that's just me.

God made Joey autistic. That is the way he is. God made Andy neurotypical. That is the way he is.

Thank God.

Tuesday, May 22, 2007

Giggle Break

So, this man was driving down the road behind a truck full of pigs. The truck hit a bump, and a pig fell out of the truck. The man pulls over, puts the pig in his car, then races off after the truck at top speed.

Needless to say, he is soon pulled over for speeding. AS the cop is writing the ticket, he notices the pig.

"Sir," the policeman frowns at the man, "Why do you have a pig in your car?"

So the man explains the truck full of pigs and all. "So you see, officer," he concludes, "I was tryingto catch up with the truck, so I could give the farmer his pig."

"That truck is long gone," the policeman shook his head. "Why don't you take the pig to the zoo?" The driver agrees, takes his ticket, and drives off into the sunset.

The next day, the same police officer is patroling, when he spots the car from the day before. There are surf boards and umbrellas strapped to the top, a large icnic basket in the back seat... and the pig. The policeman pulls the guy over.

"Sir, I thought I told you to take that pig to the zoo!"

"Yes, thank you, Officer- we had so much fun at the zoo, we're going to the beach today!"

The Human Thing

Our special ed director has a daughter with MS. It has turned aggressive, and she is currently in intensive care. Please keep our director and his family in your prayers.

Being social

When I was little, we lived in Prince Georges' County, and I went to an elementary school there called Tanglewood. I have some very strange memories of Tanglewood, and being little. The school sat slightly off the road to allow for buses to come up in a half-circle drop off. If you went in the front doors, the cafeteria/auditorium/cafeteria was right in front of you, across a hall. The rest of the school lay to the right. The principal's office was right in that front hall; turning right to go down it, the office was on the right. Straight ahead at teh end of the hall was my kindergarten room on the left. My first grade room was down that same hall, to the right; I remember it as directly across from teh kindergarten room, but it may have been closer to the front door. There were also at least two second-grade rooms in that hall. Before reaching it, there was a hall that split off to the left. I remember the school as this sort of L, but there may have been more halls. If we turned down the left hall (instead of going on the the kindergarden and first grade rooms), my second grade room was on the left. The special ed room was on the right along that hall, but it was not the first room. My brother's fourth grade room was also on this hall to the left, further down. The school went through fifth grade, so there must have been more rooms down that hall; I never ventured there. If we return to the gym/auditorium/cafeteria, entering form teh front door, you could walk straight through to an asphalted area that may have once been a parking lot, but no cars were ever there. Beyond that, enclosed to the right by that left-hand hall, was the playground. The swings, a set of monkey bars, and a tether-ball lay straight ahead, bounded beyond by trees. Slight to left beyond the swings was a large playing field for games like soccer, also bounded by trees, like a wood. directly to teh left of the asphalt was another monkey-bars, some trees, a balance beam, and I think there was some other equipment there that I didn't use. Going through this little area to the wood, there was a little path through the wood and down some steps to a lower playground. This included a merry-go-round, swings, and more monkey bars, and a teer-totter, but there was a lot more trees here. It was a special treat to be permitted to go to the lower playground.

When I was little, and going to school, my favorite thing to do- much to the annoyance of the school personnel- was to wander around the edge of the far soccer field, by myself, and pick quaker ladies and little orangy flower that I don't know the name of, and sometimes there were daisies towards the end of the year. By the end of second grade, this occupation was banned (I assume now because I was too far away for them to feel safe, since the other children were all on the equipment). I have some odd, disconnected memories of two little girls- Staphanie and Terry- who were best friends, and decided I was OK to play with, too. I think about those little girls a lot. I never felt actually connected to them- they were a little pair, and I was the permited third wheel- but I never felt they were purposely leaving me out, like almost everyone else did. Stephanie had light hair she kept in double pony-tails, long ones, and sometimes in two braids. Terry was dark, with curly hair she was emmensely proud of. They were both tall like me, which may have been the original attraction. They liked to play house and walk on the balance beam. I liked the beam, too. I could pretend to be graceful, dipping a toe as I walked like the gym teacher was always telling us to do- and I could do it by myself.

I've been thinking about these things a lot lately, especially while observing Joey's play and social skills, and Andy's. Andy has been making friends on the playground. I can do what he does now- just jump in and assume everyone will play or talk- but when I was his age, I wasn't so hot at it. Other children were just that- Other. The disconnection lingers. I watch Joey trying to connect. He doesn't know what to say to other kids. I can't answer them when they speak to him. Given the chance to simply act, he's right in there, but if there is speaking involved- his difference becomes immediately apparent, and he is locked out. My problem was that I simply didn't relate to what other children found interesting. Joey's gets locked out because he can't bring words into play to express that interest.

Monday, May 21, 2007

Parent Role at IEP, addendum

Last month, I discussed the airplane analogy and the role of the parent at an IEP meeting. I now have an addendum.

You consult with several liscensed, experienced pilots, and finally at least get detailed instructions on how to set the controls to land in you desired destination, or close enough. Let's say, just for fun, that the destination is Varanasi, India, because it is really a lovely place and I like it a lot, and I get to sigh as I type ("Ahhh... to be on the terrace roof of the Ganges View, sipping a Mirinda...") OK, so we're set. It isn't an easy flight, you have to completely skirt Iraq because of the war, but you have it on best authority how to do this.

However, the flight crew still refuses you entry to the cockpit to set the controls. They might glance at teh instructions you have, but I doubt it, but at least they will now set some controls- to land in Pocatello, Idaho. If you're lucky, they might want to fly you to London, England. Both of these are perfectly nice places. However, you will note that neither of them are remotely near or like Varanasi, India. They tell you all the wonders of these destinations, and how they are only required to land the plane safely at a destination that is adequate. They tell you how easy it will be to get to Varanasi, India from these places. And if you get shirty and refuse to go to Pocatello, Idaho or London, England, they just shrug and lock the cockpit door again. They might even try to call an air marshall.

Stay tuned for what happens when you bring that trained pilot with you on the flight...