It's Only Kindergarten

Change. The only constant in this world, and I think I might hate it. Oh I pretend to like it: time change, when we get to sleep in, or see the sunrise. I like to change the color of my hair. Really I just love a new haircut. I like to go on a road trip and get a change of scenery, or try a new cocktail at a new bar. But really, none of those things are very risky. Not at all. They have very little consequence. Even if I bleach my hair out to Gwen Stefani white I can get it back (or most of it, what hasn’t fallen out) back to a normal-ish blonde color that doesn’t make my mother gasp.

I like to joke that “apples don’t fall far from the tree” when it comes to Autism. Jake is such a combination of the people in my family, and I can see parts of his personality in each of us: his sense of humor, his lack of dexterity, his determination, his migraines, his struggle with communication, even if it is exaggerated in how he demonstrates the behavior, I can almost always get a glimpse of how Jake became Jake… including his need for things to be the same; and that he got from me.

This doesn’t mean I’m not flexible, I am, but I always have multiple threads going, so even if it looks like spontaneity, I am hopefully already prepared for that possibility. I feed the kids at the same time every day, even if it means we add in meals with other people at other times. Jake’s body clock does not alter with season, or place, or time zone, so that means he eats 5-6 meals in Hawaii, and goes to bed with hours of sunlight left in the summer. He has worn the same brand of pants for three sizes now, and I have been known to buy the same shoe in two colors if I really like them, or two pairs, for when one of them eventually wears out beyond repair.

I work hard to get things to a “steady”. It’s not settling for anything, I just want to keep the boat afloat, with everyone on it, with provisions and direction. Not to go overboard (ha!) with the metaphor, but I don’t even care sometimes if we have the sail up. I just need to know where we are headed and know that our crew is ready. We can float in one place, as long necessary, if we are together and (mostly) happy.

So Lucy is starting kindergarten in the fall, which means we need to decide now where we want her to go, and I am a wreck. Change. Again. Or maybe not. Or maybe. Aaaaghhh.

When Jake went to kinder it was sort of a surprise. I thought he was going to stay one more year in his early intervention preschool. I thought I had time to ponder the choices, visit schools and determine which disability we would try to place, autism or CP. Instead I was sort of bombarded with “Uhm, Jake is really big (tall) and don’t you think he should move on to kindergarten so he doesn’t step on any little ones who are just entering preschool?” and somehow I nodded believing that height had something to do with matriculation.

Then I visited two classrooms and picked one. I made the wrong choice, or a bad choice, because I’m not sure the other class would have been right, but I know where he went was wrong. I didn’t ask the right questions, and when I took Jake for his first day I was greeted with aides who received no direction, and a new teacher, who spoke very broken English, as it was her very-distant-second language. The class had a mix of kids with such a wide variety of disability that there was no teaching. After the first month I learned that Jake spent most of the day in a Rifton chair buckled in, and rolled from table to table. I spent the first semester in conferences every week, and the second semester trying to find another placement. I felt like a horrible mother. We got him a new placement, and two years later, when he needed a different setting again, we found him Wunderskool. Now he is happy, and healthy and thriving, and as we settle-in to the back half of his second year there I am finally breathing. I had not felt steady since Jake was three.

My close IRL friends are probably, no, I know they are done with this conversation. I keep talking about where Lucy should go to school because, while I am generally a very decisive, opinionated, independent thinker, in this case, I want someone else to have the answer, tell me it’s the right thing to do. I have at least one very close, trust-worthy friend at each possible location, so I can’t even use the “Who can care for my child if there is an earthquake and they need to take her for three weeks?” Because, yes, tragically that is how scary my brain is…

This has taken up all of my free-thought, and a lot of my previously-allocated-for-other-things thought too. I feel a bit silly being so upset by it all, but last time I did this I screwed up, and I certainly can’t handle that feeling. And I’m not having any more kids, so it’s sort of the last chance I get to do this right. And, most importantly, she is a neat kid, who is smart and funny and I don’t want to send her to the wrong place.

I know what I want: I want same. I want no change. I want to put off for another year, or two, any sort of thinking about change, but I need to really think because there are options here, and financial impacts, and logistics to consider.

So I have been on the tours. I have all the paperwork. I’ve even asked the four-year old what she wants, because, you know, that's responsible parenting. She very capably decided that she could go to at least two schools if the hours were different, and then she put her hands over her eyes and said it was “much too hard to decide."

I agree.

WunderSkool Here We Come!

Jake has been accepted into the program at WunderSkool! I know it may not truly be a panacea, but today it feels that way, and darn it, I am gonna take that feeling and savor it for at least a few days. We already have the transition meeting arranged.

and... there might be room for Lucy at the local awesome day school... what to call it? Maybe Woodstock? They will call me in the morning.

and...I found sweatpants at leTarget for Jake for to use as pajamas at camp.. he leaves *tomorrow* He is very excited.

and... no one is sick at my house

Howz 'bout in celebration y'all forward an email to every person you know and get them to sign that petition we've got going!

Ask Mrs. Obama to help form an Autism Corps. Please sign the petition http://tr.im/sa3y and while you're at it, join the Facebook group! http://tr.im/sbWD

Have a great day.... I am!

Only Want to Say It Once.

I think the visit to the WunderSkool for Jake went very very badly. He was agitated and uncooperative and hesitant and untrusting for half of the time we were there.

He seemed really excited as we drove there, used lots of happy sounds as we entered the office... then poof, basically non-compliant, "very busy" and unable to even go into the classroom or walk. I left to go to the staff room so he could be observed without me around. The director came to me not too many minutes later, "I hate to be the bearer of bad news, but we really don't seem to be able to get him grounded." and suggested that maybe we see him another time. I got tears in my eyes. Then I pulled it together, and asked if perhaps I could go to help him transition. She was very kind and said that she is always surprised when children go willingly and comply with all of the demands of strangers, and that perhaps Jake's response was actually more "typical". As I gathered my things to walk back to his test classroom, the director said she wanted to see more of the child that I wrote about in my notes to her, and perhaps that would give them a better idea about Jake.

I sort of let it slip out that I have very reasonable expectations that nothing good is ever going to happen for our family.

By the time I began to walk towards the class Jake was actually calming down, walking in the hall with a teacher/aide. I took his hand and we walked nicely to the classroom where I asked if we could work on the computer. The computer is something he loves, and they have spent very little time on them in his current class. I was hoping he would not be reminded of anything negative, after his rotten summer school experience. He sat attentively in the chair next to me. He signed for more when I asked him if he wanted more music. He touched the mouse when I asked him to touch it if he wanted a new music piece. When the Nutcracker Ballet started playing he started to get up... his sister has a little device that plays this if she picks it up, so recently he's heard that one A LOT. I chose another song for him and he watched the animation on the screen while the music played.

Then we "read" a book. Chika Chika Boom Boom (they couldn't find Jake's favorite book I hate Brown Bear, Brown Bear, but it was close enough). I read aloud, and at the end of each page I chose a letter and asked him which side of the page the letter was on (remember the letters are all jumbled up on each page?). He got every one right! On the last page I asked Jake where the letters were and he touched his palm down spanning both pages and laughed.

Another child near us started to cry. I asked for "happy" and "sad" icons, and asked him how the other boy was feeling. He chose sad, then looked sideways at the child.

I asked for "book" and "music" icons, and asked him which one he wanted to do next. He chose music, then picked up a tambourine and shook it when the music came on. One of the aides asked if he would like to look around the classroom (Jake said "Yauh") Then he walked over to one of the tall cubicles and I asked him if he wanted to do some work like the other kids. I sat him down in the child's chair, and sat in the teacher's chair. In front of us were little pretend pieces of watermelon with numbers written on them (laminate cards). I placed two "slices" in front of him at a time, and went through all of the numbers 1-10,asking him to choose "Which one is number __?" He got them all correct. What was nice is that for one of his responses he sort of flicked the number three card towards me, and one of the aides laughed and said "Duh mom. I'm done with this project." They actually understood Jake's subtle communication is actually real communication with intent.

We moved next to puzzles, and I gave up my seat to one of the aides. They worked on three- piece, large-knob puzzles which Jake has done a million times. I told him, even if he couldn't get the piece into the space, if he picked up a piece and showed us where it went that would count too. He did this twice, but otherwise he actually, eventually, placed all of the pieces into their actual spaces without much help at all. The aide was so patient, and when he got the last one in she asked for a high five, and Jake complied...with two/five.

Our visit came to a close, a full 40 minutes late (perhaps that's how long they had tried to calm him down?) I told him we were going to go home, then walked into the office. Of course he had heard "home", but had not been told "Sit in crowded office while my mom chats with the director", so he was flailing and stretched himself out across the office floor. He did however lean in to hug the director and both of the classroom teachers with whom he had worked. When I stood to leave he ran to the door of the office and waited, then walked calmly out to the car.

I came home, wrote the thank you email, and then as I hit send, got a call from Jake's school district, who assured me that she was certain that Jake's visit had gone well, despite my story of our visit.

I don't know when we'll hear back. The pit of my stomach is awash in acid, and life goes on: Jake goes to Camp Awesomeness for a week, then our local district begins on Monday the 10th. I am still trying to decide where to throw thousands of dollars towards Lucy's preschool education, and one of the schools on our short list starts July 31st, and the other has a wait list? Perhaps January (our original plan) may be a better plan.

I just asked Jake if he liked "that school". He said, "Yuh."

It will all be okay or it won't.

*******************

after talking with Sage and Squid, maybe it's possible that the visit didn't go as badly as I think it did, and Jake was able to show them all of who he is, good and bad.

AND... patience wins again.

Bursting with happiness right now.

Happy little girls (Lucy and her friend Lil' Miss) destroying the living room and sending dollhouse contents across the hardwood floor.

Jake playing quietly in his room or in the backyard with his rocks and a tambourine.

and one phone call, one little call...

that let me know that Jake can be evaluated by the Amazing school!

Life is full of possibility again! He will visit the school two weeks from today to see if he s a good fit. Phew. I can breather again.

*************

and to top it all off, our petition was Site of the Day at Terri's Special Children blog at About.com

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