Saturday, April 17, 2010

Andy's Current Favorite Song Ever

Shoot me now.

Happy Opening Day for Little League

Friday, April 16, 2010

IEP: Signed, Sealed, Delivered

I don't often sign an IEP at the end of an IEP meeting. My usual modus operandi is to take it home, show JoeyAndyDad, discuss it with my mom, think about it some more, have some more conversations with JoeyAndyDad and mom, and then sign it, already compiling the issues for the next IEP meeting.

And I recommend this modus operandi to all of my readers. There is no hurry to sign an IEP, especially if the meeting was tense or ugly or uncomfortable. You can at least get a little of your own back by making them wonder if you're going to sign or sue. If you know what I mean.

But Joey has a case manager who rocks. She's got his back. She knows what to insist on, and insists on it, which has a heck of a lot more weight than me insisting on it, because she's school personnel and knows what she's doing and has been working with Joey for three years and has a pretty solid grasp of what he needs to access the curriculum and an appropriate education. What am I going to do next year without her? (Yes, I know I'll step up and get it done, but it sure is a lot easier to have someone in that room batting directly for Joey whom the school recognizes as an authority). She looks at the stuff I send her, she thinks about what I am saying and what I am observing, and adds it in to what she knows and sees and thinks about. She makes sure the bases get covered, the dots and crosses get where they need to be, and that what Joey needs is in that IEP.

I'm a little less enthused about the people we are going to, but that is not a surprise, and I am certainly willing to give them the chance to be trained in Joey. They are unprepared for his needs, but we knew that. They are not prepared for his learning style, but we knew that. They seem caught off-guard by autism generally, but we kind of knew that, too. So I currently plan to spend a lot of time at school in the fall.

I also will have a meeting in the first six weeks. Our glorious OT is going to try to release Joey from OT direct service in October. Sensory issues? Ha! Social skills? Why would that be under OT? Met his daily living skills goals? Um... only she has witnessed him independently buttoning his own clothes or tying his own shoes. No one else in the room has ever seen him do these things for himself on his own clothes (and buttoning someone else's buttons is very different than buttoning your own). Bilateral coordination and crossing midline? Why would anyone need to be able to do that? Gross motor activities? He can walk, can't he? Why should I expect more?

Right. Already have the independent eval in the works. This. Will. Not. Do. However, it is just a matter of getting the evals in hand and presenting it in the fall. Or even in a few weeks. I can call a meeting any time I feel like it. Yay, me.

But Mrs. H wrote a solid IEP, and insisted on certain levels and types of service that got put in the IEP itself, and accommodations for things (including SOLs, which we had been warned they might not give accommodations for), so I think we're on the right road to where we need to go. We'll take a few steps and then take a look around and see where we are.

Wednesday, April 14, 2010

Here Comes the IEP: Thoughts on a Meeting

I have a headache. The IEP is Friday. This is a big one- we are transitioning to a new school, one with people who don't know Joey. I have to find a way to translate what I see into terms of black and white, specific goals to be met, skills to be taught. I have to walk that line of what he cannot do, weighed with what he can; He is doing super-well, but he's still disabled. I have to get people to understand why functioning is important to educational progress. School people patting themselves on the back for how far he's come, and having to dampen that with how far we have to go.

Why can't Joey join in pretend games with other children? Why is that important to his academic progress? How do you explain the value of dynamic intelligence, of social inclusion, of being able to connect and remain connected? How do you explain intellectual development as more than reading, writing, and arithmetic, in a world where standardized testing reigns supreme?

Why can't Joey grasp the idea of history and time, when he can tell you exactly what time it is at any given moment? How do you express concern about teaching abstract concepts to a child who is so firmly concrete?

Why can't I get Joey to read at home, independently? Why can't I get him to focus on a book? What I can I do to help him understand the importance of being able to find information for himself? How do we instill a sense of imagination, so that he will better be able to problem-solve and think outside the box?

And how do I introduce this child to these new folks? Should I be assembling a set of notebooks, packed with information about autism and approaches to teaching? Do I need more than the latest set of evaluations, thin as that packet now is? Should I have called Kluge and had a full re-evaluation?

Then there is the looming battle of OT. I've already been given the heads' up that the OT wants to release him to "consult only." Yet I see so many issues, some of them even regressions. I can't get the private eval until May, so I won't have that piece of paper to fight this battle. Should I take a clip form kindergarden, place next to a clip from last month, and make that part of my powerpoint? I know Mrs. H will be there and have a plan for him, she'll be there to help, she'll be there for him, but next year, I'm on my own again, and we don't know who will be doing the program management, or if that person will care about Joey. Will this new school be more like this one, or more like the preschool? Will they have the skills to give Joey what he needs, or will I have to fight for training, service, understanding?

Farewell, frying pan. Namaste, Agni.

Tuesday, April 13, 2010

Upcoming Event: Here comes the IEP

I sit at the picnic table with my little notebook, making my scribblings, a story that sometimes runs through my head for developing, but nothing serious, a junk novelette for the fantasy section of dimestore bookrack. He runs up to me, looking tired, red in the face from the running, which is more like a toddler trot. He lays his head on the table, then perks up to take a sip of soda.

"How are you, Buddy?" I ask, as he looks hot. He grins.
"I'm OK." He pauses, takes another sip. "I am playing a game."
"Oh good!" I start in the praise, but he cuts me off.
"Use the arrow keys to move the Joey through the snappity-snap turtles. Press the space bar to jump." He runs off, with a funny gallop. It isn't skipping. Joey can't skip. He can't hop. He doesn't really run, not like other children his age, even the ones bad at sports. He can't crab-walk.

He re-appears, and starts doing the buttons on my sweater. This is an exciting moment, a new skill, he is showing off. They are large buttons, and he has a hard time getting them through, but he does it. I have never seen him do a button on himself.
"I did your buttons, Mommy!" the pronouncement is sharp, clear, full of pride.
"Good job, Buddy! Thank you!" He's gone again. I tried to put him in pants that he needed to snap and zip himself, but it was too much frustration for him. He zips his coat now, that's a good thing. But the snap was too much. I haven't really tried a button, pants buttons are too small for him yet.

They both appear, panting, and claim their new Zhu Zhu Pets. They turn and run off, Joey following the siren call of, "Come ON, Doey!" The words that follow this call are too unclear for me to decipher, but Joey seems to know what his brother is saying, and they are happy. Happy is good.

He is at the swings. Someone has a baby in the baby swings, and he pushes, ever so gently. He loves babies. He is talking to the mom, who doesn't mind that there are gaps between her questions and his answers, she gives him time to process, probably more because she is watching the baby than out of understanding of processing disorders, but it will do.
"I like Wow Wow Wubbzy!"
"Do you? That's nice. Who do you have there?"
"Is she a pink... um... rabbit?"
"And Wubbzy is a bear with a long tail!"
"Do you go to school?"
"I go to Hugh Mercer."
"Who is your teacher?"
"I have Mrs.H. Mrs. L's class, we did about ancient Egypt."
"So you have Mrs. L?"
"We read about George Washington!"
Not bad. On topic, real responses, mostly nice grammar. It is the gaps, which I cannot really reproduce here, that stand out and make it clear that this conversation is not ordinary. I know the woman picks up on it, because she glances quizzically at me, but I won't say anything unless she comes over to ask. Some do. Some don't. That's fine.

He is trying to play with the other children; Andy and two other little boys, who are about Andy's size, so probably Joey's age. I quickly discern the game involves a bad guy, Star Wars, guns, and a lot of hiding behind trees. Joey walks up to one of the kids, I can't hear what is said, but the look on the child's face screams confusion and annoyance. Another child tries to get Joey to hide behind a tree. Joey wanders off. Andy tries making him the bad guy and shooting at him. Joey gets upset, he doesn't want sticks pointed at him, and runs back to me, crying.
"Andy is killing me! I don't want to be dead! I died!" Oh no, I think. Our trigger is tripped. The rest of the day is sprinkled liberally with pronouncements of the death of various toys, and how long they will be dying ("My Zhu Zhu Pet died for twenty years! He's dead! But he got better, he's better now.").

Joey has had enough. The frustration is getting to him. Sometimes he will lay on the merry-go-round and play in the dirt to calm down, but there are bigger kids there now, and they have it whirling about at a big-kid speed. He calls to Andy. I gather up the pile of small toys and sticks that has accumulated around my position at the picnic table. We wander towards the car. He's come so far, I remind myself deliberately. So far. So far. So far.

So far to go.

Bad News from the Shop.

It has been brought to my attention that CafePress is donating 10% of sales of anything marked "autism" to Autism Speaks through the end of April. Upon inquiry, this includes a number of other autism-related tags as well. We were not given any notice about this "promotion", nor were we asked for permission.

As you may realize, April is for autism-related products what the Christmas season is to most other retailers: the high season, when you make your money, if you are going to make any money all year. I get 10% of the sales of CafePress products through my shop. Through most of the year, I make enough to cover the cost of the shop (because I have multiple designs, etc., I do have a "premium shop"). Usually from February through April, I make enough to cover a few sessions of speech therapy for Joey.

I must leave it to you to make a decision about purchasing from the shop this month. Does 10% to Joey balance out against 10% to Autism Speaks? If you would prefer not to support Autism Speaks, but were intending to purchase something from the shop, my advice is to wait until May, to be extra-doubly-sure we are out of this "promotion" period. If you are searching for my products this month, the only products you will be able to find searching for "autism" are the items which actually have "autism" in the caption/design (assuming the tag changes take effect). My apologies.

I have tried a number of other sites of this kind, but CafePress is the only one that has been self-sustaining and actually pays real money- I have actually received real checks, not just promises that I might get one someday if my design is super-popular, or get "paid" in site-"cash" that can only be used to buy stuff from the site.

EDIT: I have been informed by CafePress that the "fundraiser" will end April 17.

Sunday, April 11, 2010

A Birthday Celebration, Boy Style

We started our Birthday Bash at our favorite of favorite places, Chuck E. Cheese! We went first thing, because it gets a little crowded on Saturdays. Joey even got a score of 230,000 on skee ball!

Then we got to play baseball! Joey is very happy to be playing in the blue team (the Yankees to the rest of us).

JoeyAndyDad showed Joey a bit about throwing the ball. Joey loves fielding the ball, so we're going to be practicing throwing and catching.

Joey also got a batting lesson, and tried to hit a few pitches (before they brought the T out for him). It was very exciting!

Joey loves running around the bases!

Joey on second base, awaiting the next hit.

Then he got mac and cheese at Ruby Tuesday! Yummy! It was a great birthday lunch.

We went home for cake and presents. Grandma made an awesome Buzz Lightyear cake. It was delicious.

Joey got lots of great presents (lots of Buzz Lightyear, Wow Wow Wubbzy, and a cool clock that projects space themes on the ceiling) and his favorite... Andy got him his very own Zhu Zhu Pet!

It was a really happy birthday!