the aftershock

Belac came home, yesterday, with an 89% on his Science test. A couple of weeks ago, I was told that he completed the test almost independently with only a couple of nudges to answer several questions with full sentences. At the time, no one knew about his little blue pill. I was also told that he had a 3rd grade math assessment, yesterday, and scored 24/25. Everyone is thrilled and whistling a different tune and I just think, it's so weird that this little blue pill makes such a drastic difference in his ability to perform in school. Without it, they wanted to put him in a modified class for kids with learning disabilities. But with it, he has been able to demonstrate what he knows and is capable of. As I believed all year, academically he belongs in a typical classroom.

I have very mixed feelings. I think his not previously being on meds might have been some source of pride for me. Maybe I thought I was a better mom because it was proof I had figured out some better way or solution. Or maybe I had a false sense of security, if he wasn't on meds then surely he didn't need them, right? I grew up with a mom who took a lot of pills for so many chronic and mysterious ailments that never seemed to go away. I never really understood her health issues and perceived my mother as lacking the necessary will to take care of herself properly. Her leaving it up to the pills always upset me deeply. I viewed the pills as some epic fail.

And now here I am in this unfathomable place with my kid. He's just 9 years old. I'm worried that I am nurturing a future substance abuser by handing him a pill to put in his system 5 days a week. I am concerned that this pill is an amphetamine and highly addictive. I'm concerned about withdrawal. I'm concerned about side effects, particularly as it effects him emotionally. I'm concerned about long term effects on his developing nervous system. More than anything, I'm concerned that he will one day pop pills instead of helping himself in other ways that prove to be more difficult but more effective. And yet, admittedly, there is another truth that has very reluctantly emerged in all this.... I am sort of relieved that there's this pill that helps my son with his uphill battle against his tendencies that hinder him. Tendencies which are very real and impairing. And I am particularly astonished and sad, honestly, to see that even an aide, poking at him all day, was not by itself as effective as this little blue pill. It's humbling. So together, could he please be (and does it mean that he will be) that much better off...?

for myself

 Belac 2/2012

What would happen if I stopped writing about autism but continued writing about my family? Would autism go away or at least not permeate my life in the so many ways it does? Would you still be able to see autism lurking here, even if I never alluded to it again? Would I even have anything else to write about?

Ella told me once that she thought I could staple the sheets of my blog together and publish a book. She's my friend, mind you, so she is in the business of flattering me. But no way could I ever do that. My mom would disown me, first of all. And the controlled privacy of my kids and my life matters to me a lot. The other thing is, I could never deal with the scrutiny of others. Everything here is just too close to me.

But writing is such a curious need that won't go away. I'm scared to admit it, but writing matters more to me than playing the piano. Playing the piano involves someone else's notes, and as long as I'm not imaginative enough to come up with my own, music is more like an escape. Writing is different. I write because I get all mixed up and emotional about stuff in my life. When I write it all down, it's like I can turn the page, let go a little, and not hold it in my head anymore. And sticking it online helps me maintain a certain leveled perspective while dotting every i. But what if I assumed a different perspective or wrote about something else entirely. Would it change how I view my life? Could I detach myself enough to realize the 'that's it' perspective my FIL talked about the other day?

My MIL is writing a book, right now, and working with an editor. It's kind of a memoir and I haven't read it yet. All week, I watched my MIL using a thesaurus and adding more colorful adjectives to her draft as per the editor's orders. She also changed grammar a la Microsoft Word. Does that make any sense, when you think about it? Isn't the thing to do is look inside and let whatever it is come out the way that rings the most true? Even if you say the same wrong but right words over and over again? How does one go back to replace just one word without also rewriting the whole sentence? Does your story become less true and less your own once you invite people to read and begin fussing?

I guess my point is, maybe I should see if I can write about something else and if it does me any good. Could I make up and tell a story, and maybe my own happy ending while I'm at it? Explore something else enough to write about it?  I really have no idea at all.

that's it

2/25/2012

Look, my FIL told me, with impatience in his voice. You want to drive yourself crazy and go down this spiral? I can't stop you. But your kids are still young and you don't know where they will be!

My husband and I looked at each other. We were all just talking about a family friend whose kid has severe Tourette's syndrome among other mental health issues.  They had been singing this kid's praises and I just wanted to know if this kid was happy. 29 years old, lucky to have gobs of money bequeathed to him, but had he ever had a girlfriend? Does he have friends? Was there anything more the parents should have done?

You bought permanent life insurance, he continued, that's great. You're saving the best you can for college. And from what I see, you're doing a fantastic job with the boys. What more can you do? Look around you, you're better off than 90% of this world. You've been dealt certain cards, you're doing the best you can and that's it! That's it.

I wanted to cry, actually, being spoken to like this. But he is one of the very few people I can actually listen to even if it's hard to swallow at times. The overwhelming majority will tell you everything will be fine, just you wait and see. Everyone will tell you anything to make you or themselves feel better, even if they're suggesting things that they themselves don't really know about. Occasionally someone will say something they shouldn't and that stings, too. But I have always sensed a deep understanding from my FIL, though we don't talk much. He understands that I would give both arms to my boys, but that it still might not be enough. It's true. All I can do is the best I can and that's it. I have to figure out how to be okay with that.

Merci beaucoup!

Snowing, snowing. Skating, hiking, kids on the hill. Both boys learned to turn on their respective skis and snowboard. We ate well, slept well. A real winter wonderland. How did the week fly by so fast? Heading home at the crack of dawn after a sweet break, far away from everything. Until we meet again, Canada. Thank you.

Great day

Got Jake a snow boarding lesson at the local ski hill. Right away I liked his teacher. She was firm, confident and very positive. I saw the way she showed Jake a few things before they went up the magic carpet and I saw the way she coached him down. I told my husband, she's a real teacher and has the right personality. I bet she could get Belac on skis properly! Let's get him a lesson, ok? I asked her if she had time for Belac and she hesitated. You know, I wasn't even exactly supposed to be teaching today or this week, I... I am the Director of the Ski School. I was a master teacher at Mt. Tremblant for a dozen years and left 2 years ago to run the ski school here. Of course! I laughed, I've never met a teacher like you. I knew right away that you don't really teach at this level. You really know what you are doing...! Look, my Belac is hard to teach but I know you could get him on skis. I'd be so grateful if you tried. Any time you are free this week, I will bring him. Any time. Tomorrow at 9am, she replied after a long pause. I smiled and gave her a thumbs up. We'll be here! By the way, today is my birthday. There was already 2 feet of snow when we arrived a few days ago and I woke up to even more snow, today. Everything was so bright and sparkly. What a great day in the outdoors!

Ice skating

As the sun was setting, we got our ice skates on and followed a flooded, frozen path through the woods. It was the most beautiful, magical thing! I was so grateful for those 6 ice skating classes we gave the kids. We were the only ones on the trail and the kids managed the bends and hills, with Belac likening the experience to a Mario Kart race. My husband and Jake zoomed ahead, I skated circles around Belac, who was impressively holding his own, albeit slowly, and amused myself skating backwards and trying to twirl. I pretended to be Princess Peach and Belac was Luigi, who asked not be in 4th place. Fine, I told him, but you have to work for it. Move your feet or I'm going to win! Can we do another loop? the boys both asked at the 'finish line.' Seriously? my husband responded. If the sun were not setting so fast, we would have gone around more than twice. What an amazing way to end our day.

my two front teeth

My husband asked me what I want for my birthday. Birthday? Didn't we celebrate in December already? Honestly, I don't want a single thing and as far as I'm concerned, my husband has already done enough for me. In December, he cashed his company stock to pay off my student loan. For the first time in 24 years, I no longer owe money for my education. My MIL laughed in shock/horror. You're 42 years old and you still had college loans? You see, in Canada, college still costs - even for the best schools - less than 10k for undergrad. It's unfathomable to my MIL that people would go into such debt for an education. Of course, I didn't have to go to private colleges. I could have gone to the University of Michigan, where I was accepted into their music school and would have paid in-state tuition. And then I could have gone onto Indiana University, where I did apply and was also accepted into their graduate program. And would I have been worse off? Those are great music schools at more than half the cost. I probably would have been upset to forego the opportunity to go to NY and to Juilliard, given the opportunity, and I would have never met my husband, but I have to believe that there were other valuable lessons and opportunities I would have gained. At a time when I feel and understand that helping my kids find their way is not exactly a piece of cake, I am in awe to look around me and see our siblings having so many kids. Like in utter awe. How do they have the energy? How will they be able to provide financially? How do they have the confidence they can manage? My husband and I are stretched and at full capacity and we have just 2. But that's the way it is with kids and opportunities, isn't it? It depends on your appetite for risk. And this is why I know I have truly reached middle age! I went and got 3 degrees from private institutions, with no thought at all as to how I'd later pay for it. And even up until a couple of years ago, even with autism in my life, I was ready to have a 3rd kid or adopt a bunch of foster kids, even when I had even less idea where Belac would land. But something happened recently, like this past year. I realize, you know what? I have enough on my plate.

O - Canada

I am up north for the February break and will be off line for awhile. It's nice to be up here, far away from everything and someplace beautiful. My kids are always so happy to be in Canada. We also had such a frank talk with my MIL about the boys, tonight. And you know what? Even though she said one thing that made me squirm and bite my tongue because I wanted to deny what was probably true, it was just overall nice. We have come such a long way together. She used to scare the hell out of me, but I am now grateful that she is not so prim and proper and unafraid. She is actually a good role model for me in many ways.

why, good morning!

Bumped into Jewel on the way to school.

Belac, she greeted him, what are the 4 layers of the earth?

God. The crazy part of the world we live in.

Uh. The crust, the mantle... uh, I don't really want to do this right now.

Good for him.

I just thought I'd quiz him, she explained, knowing he has a science test at 8:30.

Mom! Belac told me excitedly, I'm going to quiz the dog! He ran off to the dog, who was now being walked by one of Jewel's kids. I heard him ask, Bailey! What are the 4 layers of the earth?

Yes. That's what you do with a dog. You make them perform. As much as I pull my hair out making sure that Belac absorbs the information he needs for school and am on top of him for every little thing and prompting him right and left, I do know at my very core and even more than this mother who has to do very little for her kids. Our kids, my Belac: they are not dogs.

data

Last night, Belac and I studied for his Science test on Friday. It is a lot of material and we have been going over it a little everyday for a week. And I guess the remarkable thing to me - last night - was how quickly he was able to come back with the answers. Usually there would be so much refocusing and redirection. There would be whining and maybe some tears because it would take forever to cover the slightest bit of material. Albeit, we have been at this for a week. But he also now -part way through - has a little blue pill on his side. Wow, he even said to me, impressed with himself and noticing the speed at which we were zooming through the material, I know all of my science!

I really don't know what to think. I am not a fan of drugs. In fact, I am generally averse to taking anything. Need to relax? Take a bath and drink wine. Stressed out? Go outside and take a walk. Have a headache? Go to bed. The last time I went for a filling, I refused the novocaine. If anyone is over and has a headache, I don't ever know what we have or where it is or what works better, you have to ask my husband. And so it is this strange, surreal, and somewhat upsetting thing that I have been handing my kid a pill every morning. It goes against so much of how I've lived and what I've believed my entire life. A little cleverness and a lot of will power should be enough to solve everything.

 4 years ago, I asked my doctor about meds for Belac. Should he be taking something for his attention? If you need to ask me, then it's not the time, he responded. I never got it. What did he mean, if I had to ask him? Wasn't his job to advise me...? But what happened is, a couple months ago, that 'time' arrived clear as anything and I now understand precisely what he meant back then. Belac's struggle to focus had reached another level and now affected his ability to show what he knew and could do in school. They wanted to put him in a modified class because some days they couldn't even assess him. So much time was spent redirecting Belac's attention because his mind seemed more and more everywhere but where he needed to be. When I brought Belac to the doctor in January, I sat down with him. This time, I told him that we needed to talk. I wanted to know about the meds and what we could try.  I could honestly say that in 4 years we had tried pretty much everything and we were at this point as sort of a last resort.

Help is the goal. Help my kid pay attention in school easier so it can be less of a struggle and more enjoyable. But what do these meds also do? Do they change you? Change your brain? Change who you are?  And then what happens if you run out or get used to them, do you fall apart? From all accounts, he's been focusing much better in school these past 2 days. Interestingly, the Sunny Patch newspaper posted 14 photos of his class visiting the senior center. Most of the photos contained Belac and there were also 2 close up photos of just him talking to the seniors. Would he have been able to chat it up like that without the pill? Maybe. I've definitely seen it happen before. But maybe not, too, depending on the day. What is him? What is the pill? And this is why I worry. He's 9 years old. It's an age of great learning and we've come so far without it. After all, these pills have nothing to do with a life or death sickness and having some sort of crutch is the last thing he needs. I want him to develop that will power that I'm not exactly sure he can if he's taking a pill. That said - and here I flip flop again - he's wired differently and needs that extra nudge. This morning, he got dressed and set the table without any prompting and before I could even get dressed. He was happy about starting his day and that's pretty huge. Everything, really.

little boy blue

Picked Belac up from school yesterday. Was told that he had been weepy because his trip to the Senior Center in town meant missing Lily at recess. The aide mentioned his silent tears all morning over this.

But how was the morning otherwise? I pressed, how was his work?

Fine, she replied, and then kept talking about Lily.

His teacher then joined in the discussion. Wow, Belac had some really good interaction with the seniors. He talked with them, went to retrieve some bingo prizes for them... He was upset on the way, but then chatted up a storm once we got there and was fine!

I had hoped to get more feedback about his morning. I read later in his book that he had gotten some good math work done and that a hexbug incentive chart was working well.  I later watched Belac with his reading tutor and noticed how chatty he was, on topic for what they were reading, but off topic in terms of getting the exercises done. Still, it was pretty remarkable how present he was given how the past sessions had been.

I followed him around the house and studied him. At dinner, my husband thought Belac was a little hyper. And maybe perseverating on topics more than usual, I added. I mean, today, looking at him I'd say he is an Asperger's kind of kid. I wouldn't have necessarily said that before....

Put the kids to bed at 8:30pm. At 9:30... 10:30... 11:30... Belac kept calling for me, asking if it was morning time and if he could get up already. My husband pulled a pillow over his head, he needed to be up at 5am today. I was beside myself but not upset, tired as I was. I knew - especially today - this wasn't his "fault." At 1 am, I hauled Belac into the guest room and got in bed with him. I laid down the law. We are going to sleep and you are not to talk or wake me. If you MUST ask me something, you whisper to me, got it? No one is allowed to get up before 6:30 am and as long as I'm sleeping, it means that it's not time to get up. Got it? Yes, mommy, was the reply as I kissed him and told him I loved him. I love you, too, he replied.

It wasn't until 2 am that he started breathing heavily and fell asleep. I calculated that he had been up for at least 17 hours....

Only my husband knew that I had given Belac a little blue pill that morning, a low dose stimulant that was supposed to wear off in 6 hours or less. The plan that we had originally devised with our doctor and teachers was to start the pills over February break, with his first school day with the stimulant being the 27th.  But you know what I wanted to see? If it's really the magic pill everyone believes it is. And the only more objective way to know at this point, was to secretly start the meds a little earlier than planned. Obviously, I can see that Belac needs just 1/2 the prescribed pill, given that he is very sensitive to it.... So even though I know he'll be more tired today, it will be interesting to see if the teachers have anything remarkable to say in the next days. As far as I'm concerned, the jury is still out. Definitely still out on this one.

fixing

Came home to a busted pipe, the other night, that was spewing water everywhere. The very pipe that was replaced a year ago. I forgot about it until now because we were able to turn off the water, clean up, and go on with our lives.  But now I have reached out to a new plumber, a recommendation from Dot. I've been told he's the best. I also found out that he was the previous owner of the house that foreclosed around the corner from us. He also told me his son is autistic. Of course, all of this information is good and bad. Good because.... well, maybe it's good for people to be open and talk about these things. Bad because if he can't help us solve our plumbing problems it makes it hard for me to let him go and find someone else. We've worked with 3 different plumbers in 5 emergency visits during the past 1-1/2 years here....

Now waiting for the tree people. They are 45 minutes late. We have already taken down 6 trees that were dying and/or touching the house and the remaining 5 are about to come down. Hopefully, the few trees left will require only minimal maintenance in the next years.

Also going to see the doctor, this morning. I never, never call the doctor unless I really have to and today I did. She's seeing me right away. Every night, lately, I have laid in bed worrying that something might be going on like several years ago. I have worried that - you know - maybe it's not just a scare this time around. Something is not exactly right, I can tell. But what is terrible is that I've been dragging my husband through the worst case scenario, worrying aloud about what will happen to the kids if I'm ever suddenly not around. They really need me. Are you calling the doctor today? my husband reminded me for the umpteenth time before he left the house this morning. You must call the doctor, he insisted, let's get to the bottom of this!

Wow... 3 huge trucks, a cherry picker and 6 guys have just showed up. They are blocking the road and figuring out how to organize. What an amazing spectacle. Why is everything so dramatic with us?

peace revisted

I looked over Jake's shoulder. What do you mean "peace is also something that when you are so close to it, it normally flits away like a bird?" It sounded so depressing. Well, he explained, something always interrupts that feeling. Something always happens! Maybe you could explain it, I suggested cautiously. I really try to stay out of his writing process. As a 5th grade student, he is encouraged to add more and more details and to just get everything down he can possibly think of, even if it kind of dilutes the message. As for me, though, I spend my time doing the opposite and just trying to boil everything down to the basics. So here is Jake's final, final draft for a writing party on Thursday. Sweet, if you ask me!

My Peace Symbol 
by Jake Snowflake

Peace means to have no conflict or war. Peace is also a feeling that when you are so close to it, it normally flits away like a bird. In other words, peace is not permanent so you have to do a lot to maintain it. When I feel peace, I feel happy. I feel this way on weekends and when I am done with all of my homework. I feel peace especially in the summer when I am free to run around and have fun. I feel peace also when nobody is mad at me, and when I get along with other people. It’s not being lazy that makes me feel happy, but it’s the feeling you get after you finish good work or after you tried hard at something.

Before we moved to Sunny Patch, we had a big apple tree in our hilly backyard. This beautiful apple tree was suitable for climbing because its strong and sturdy limbs were low. I loved this amazing apple tree and would climb it every day. The red apples it grew were as sweet as honey and the tree’s leaves were as green as grass. In that tree I felt peaceful. I would stay in the tree for hours swinging from its branches and I would look all around. When I was in the tree, I saw the world from a different perspective. I felt as calm as a lake. The reason why I chose an apple tree for my peace symbol is because when I am in an apple tree I feel happy, just like peace does to everyone. I chose an apple tree for my peace symbol because of my experience in my old apple tree. My peace symbol has green leaves, red apples, and the branches looks like a hand giving the peace symbol.

An apple tree provides food, shelter, and shade. This is what people need to feel peace. An apple tree also needs three things. It needs soil, sunshine, and water. Peace needs things, too. In order to have peace you have to work at it. The next time you pass an apple tree, climb up and sit in its pleasant limbs, taste the marvelous apples, feel the warm breeze, and smell the tree’s wonderful blossoms. I think you will feel peace once you do these things. This is the reason why I chose an apple tree for my peace symbol and hope you believe in my peace symbol, too.

shorts

Saw some animated shorts tonight. It was a treat. The kids shared popcorn and were very interested. Belac sat on the very edge of his chair. Some were very good. A couple were a little scary. On the way home, we discussed our favorites. I think I'm going to have a nightmare, can we all sleep together? Jake asked. One of the things we have reinforced all year is no video games after dinner. Also, my kids don't watch tv, so sitting through 90 minutes of anything is pretty powerful, and this right before bed. You'll take a hot bath before bed okay? He was quiet. Did these shorts get you all riled up? He was quiet. The other night, I had a horrible dream. I was going up and up these stairs, floor to floor, knowing that the house was rumbling and about to collapse but not knowing where Jake was and I was screaming for him. I knew it was possible that he had found his way out, but there was no way for me to know so I had to assume he hadn't. That's definitely anxiety, my husband told me. And you know, having experienced that for like the first time, I realize you can't just tell someone to not worry. So here we are in Belac's room. Belac's on the top bunk, I am on the bottom, and Jake is on a mattress on the floor in his sleeping bag. Hubby is getting his stuff together for work tomorrow. Dog is sleeping with Jake. It's sweet actually. I am listening to Jake snore and there is nowhere else I'd rather be.

the dirt

The chair of the Sunny Patch education committee, the mom of a violin student, called to tell me that she really believed I must go to the Superintendent and speak up about my boys' experience in the schools. There are a lot of complaints about the quality of the middle school, right now, that are pretty much falling on deaf ears.

Gimky, I also heard the superintendent tell another kid's mom in Jake's class that she would look out for her son. You really must go and get that reassurance for Jake.

Are you telling me that you really believe that, Jewel? That is bullshit! What has the Superintendent done about Jake and this boy's class right now? How is she looking out for that kid if she's doing nothing about the class he's in right now?

Gimky, it's too late about this year -

No, you see, it's absolutely not. It's only February. There are 5 more months of 5th grade. Not too late to send in an assistant teacher to help this woman. Not too late to hold the principal accountable for how they so poorly rolled out this new math program. Not too late to figure out what the hell they are going to do about math both this year and next, since the kids won't even get halfway through this new book! The superintendent is doing NOTHING, Jewel. She is as incompetent as everyone else.

Gimky, let me tell you, you want her on your side.

For what? And now I was speaking fast. You want me to get worked up and spend all of this time making my case and for what? She's not doing ANYTHING Jewel. Nothing except protect the teachers and going with the flow! We have been complaining about Lotto since October. Nobody is doing a god damn thing about it. And frankly, I have no time to fight with any of them. I am too busy homeschooling my children every night!

Silence.

I come here to this district and my taxes are triple what they used to be and you want to know the craziest thing? In some ways, this district is no better than the horribly ranked one we used to be in. There are great things about the school, for sure, and the facilities are the best that money can buy, but there is also your good share of underwhelming teachers. This school district doesn't have to do too much, you know? You have wealthy families that can hire tutors for their kids. Parents who have time to volunteer. Teachers who don't have to deal with certain issues of a hood. But this is also a big problem, too. The teachers don't need to care here. They have the luxury of not having to invest too much in the kids after they get tenure, they collect their paychecks anyway and are protected no matter how badly they do. And unfortunately for Jake, he has had some of the worst teachers in the district. I cannot wait for next year, when Jake will switch for each and every class and won't be stuck with just one teacher. I also tell you. If next year does not improve, I am pulling him out. That's not a threat, it's a fact! Wow Jewel - I interrupted myself - I had no idea I was so mad about this.

But I must have known in a way. Yesterday, I told my husband we should try to improve the looks of the kitchen a little. The house cannot command a certain price if the kitchen needs work. But we have at least 5 years to figure it out, he told me. I wasn't so convinced.

You need to speak up, Gimky, Jewel insisted before hanging up, you need to go to the Superintendent.

coldplay

This morning, Jake practiced piano. As I helped Belac get his stuff together, I heard Jake playing pieces far beyond where I had assigned him in his book. I almost said something before catching myself. I walked out with Belac, down our drive, and watched him continue by himself along the sidewalk. He arrived at the corner and crossed with Ron's help. Ron then turned back to me as usual and we waved. Boy, is he ever getting a huge tip from me at the end of the year. I already wrote to the town to sing his praises....

Came back to the house to hear Jake banging out Coldplay tunes by ear, even going back to the start of a phrase when something wasn't quite right. I resisted any urge to help him and didn't say a word. I simply started with the dishes as I eavesdropped. It had to be such a nice way for him to start his day and I knew he was having fun. But I need to remember from my past mistakes. Sweet as they are, these moments between our weekly lessons should have very little to do with me.

lub

If my mom and dad die, will you be my mom?

Of course I will. But you know, Izzy, it will probably never happen.

Where would I sleep?

Well, I'd probably give you the guest room.

Or I'd sleep on Belac's bottom bunk?

Yes. But you know what, Izzy, it's probably never going to happen. You shouldn't worry about these things.

I don't want my parents to die.

They probably won't for a long time. But if something ever happened and you wanted to live with us, of course we'd take care of you and your sisters.

We had this conversation on Belac's birthday, as her parents were driving cross country to return home to NY. Today, her mom leaves for a conference. Kati called to say goodbye and told me about tucking Izzy in last night.

Mommy, she said, if something happens to you and daddy, then I think I want to live with Gimky. Is that okay?

Yes, but you shouldn't worry about these things.

Well, the only thing is that if I lived with them, maybe Jake and Belac wouldn't like playing with me anymore because I'd be their sister....

This morning, I got a phone call from Sunny Patch. Jake was in the nurse's office and apparently not feeling well. He had no fever but complained of a stomach ache. I arrived and tried to convince him to stay, but he said he needed to go home.

Too bad, I said to Jake as we drove home, I'm going to have to call Izzy to cancel the skating.

What? But I want to go skating!

If you're too sick for school, you're too sick for skating.

I sent him to bed. Not an hour later, he was up and dressed again and asking me to take him back to school. What? Are you kidding me? Stay home, you're home.

No, mom. I'm fine now, just drive me back to school, ok?

I drove him back, bewildered. Okay, Jake. Straight home after school because we're going skating.

Is Izzy coming? Are we all going?

Yes.

understood

There has been so much emphasis and concern about Belac's concentration, this year, and specifically as it pertains to English Language Arts. He is in 3rd grade and must take a NY State examination in April. It means that, this year, they are really teaching to the test. I have been working on math with Belac, every single day, and he is doing well. But in English Language Arts? It's like pulling teeth. He has a hard time with reading comprehension. He has a hard time focusing. He has a hard time inferencing. All those letters and words all over the place and the concentration needed to pull a story all together in words. It's just hard. And this year, the kids have to be able to LISTEN to a story (and not see it) and answer questions about what they hear. Are you fucking kidding me?

We've been called into meetings about Belac several times. In January, they asked about putting him in a class for kids with learning disabilities. One of the first questions I asked was "What does it mean as it pertains to this test? Must he still take the test and will it 'count'?" The answer was always yes.

You see, the test is really important to the school district. It affects their ranking. It affects their funding. It affects their reputation. Did they want Belac in the modified class because they didn't want his test scores to be counted in case he didn't perform well? No, they told me. His grade on the test will be counted whether he's in the typical class or that modified class.  Fine, I thought. I was satisfied. But because the modified teacher was on her way out on maternity leave and the aide in the class was just horrible, I couldn't in my right mind even consider this option. How could they ever think this would be better than what he already had?

But then, you see, I hired Belac a reading tutor a few weeks ago. A teacher who worked with Belac last year in 2nd grade. For the past weeks, she's been coming to the house to read and work with him for 40 minutes, and then to teach me how to teach him for the last 20. I love this woman. She totally gets Belac. Every 10 minutes, her iphone alarm goes off and Belac has the opportunity to choose the new alarm that goes off 10 minutes later. It's totally motivating for him and she just knows how to get him to work and perform. And boy, have they had laughs about the various sounds. One time he chose the doorbell sound, and the dog barked his brains out....

Today, I just shrugged and shook my head and wondered how Belac would ever be able to take this test. I saw her spoon feeding him and breaking concepts down into the most miniscule bits. But he just couldn't concentrate.

Look, Gimky, she told me. Belac is going to be a contributing member of society. This is just a test. The teachers are freaked out about it because for the first time, how the kids do factors into their 'grade' as to how they are doing as teachers. For Belac, it's just a test. There are so many people out there who don't perform well on these things and go on to lead more successful lives than most. And, anyway, I think Belac has the potential to surprise us... I really do.

First of all, I was moved by her confidence. Secondly, it suddenly explained EVERYTHING to me about the school's actions. Yes, the school did tell the truth. Belac's grade would be counted whether he was in the typical OR modified class. But what they didn't explain and what I didn't know to ask was the NUANCE.  If Belac was in the modified class, his grade, however bad or good, would be counted in the modified class. If he did great, good for the school. If he did poorly, no tears lost, he was in a class for kids who had challenges. No one would blink an eyelash if a child didn't pass there. However, if Belac remained in his typical class, his grade would be counted in the typical environment as a typical kid, and it would affect his teacher's grade if he didn't perform well because NY State would assume that he should have been able to pass if his teacher was doing a good job.

It just makes me so mad. They are worried about Belac passing that ELA test. They're not really looking out for Belac's best interest. I really could NOT before understand why they would want to switch him into this modified class, midyear, where the teacher is 3 weeks away from maternity leave and on her way out. They could not guarantee that her leave replacement was someone who had at any point had her own classroom. And to put him in a class where the aide is a warm body and not proactive at all? But now I understood. They are trying to protect the ranking of Belac's veteran teacher.

a day in the life

It has been a different kind of few days for Jake.

First of all, he has been ice skating and playing tennis for the past 3 weeks and it's been great for him.

Over the week end, he slept at a friend's and managed to stay all night. First time in a year he didn't end up home.

He improved on his Peace essay, even though he already turned it in.

Had one-on-one time with dad over the Super Bowl.

Found out, yesterday, that he earned a 94 percent on his math test. Proof positive that good things can happen when you don't give up.

Started a cartooning class that he thought was just so much fun and interesting. Told me it was his best Monday ever.

Came home to eat leftover pizza, considered a 'treat.'

Had almost no homework, so was left to read for almost 2 hours before a hot bath and bed.

Slept in until 7:30 this morning.

Practiced piano for 15 minutes before running to school.

Why do I need to do this? he asked.

Because if you don't at least get to a certain level in piano, you'll later spend the rest of your life mad at me that I didn't make you learn.

He rolled his eyes.

You are a natural at this, Jake. Trust me. If we really give this a go, you'll go a certain distance and far enough to play now and again and for fun.

Fine, he said with a groan, as he began playing and zoomed through the pieces I only just taught him.

Life is good.

monday

I zoomed to the media arts lab to pick up the boys after teaching. And as Belac paced around and got his jacket on, I introduced myself to the teacher. I'm Gimky and I'm so glad to meet you... I hope the director shared my letter with you!

She did, thanks so much for reaching out to us like that. It helps us so much!

Well, he's very motivated and --

Yes he is. He told me he wants to work for Pixar when he grows up.

I laughed. He's very motivated, I continued, draws, makes up stories and has a lot of ideas he wants to make into movies. He might not always seem so engaged, but he definitely absorbs -

He was very engaged, the teacher interrupted. It remains to be seen what the dynamic will be in the class, but as for Belac, this class is going to be great for him! He really wants to learn. He made a mini movie with his Hexbug today.

Really? I willed myself to take it all in stride. I'm not going to be the pathetic mother who starts crying at pick up.

Jake came running up after his cartooning class. How was it, Jake? I asked. 1o out of 1o, it was so awesome mom! The best Monday I've ever had!

Earlier today, I couldn't get a Schumann piece out of my head. My piano student was going to be here in 5 minutes, but I just wanted and needed to take my violin out and play it a little. I slid around and indulged in every rubato there was. It was ridiculous. But you know what? A little creativity goes a long way. The soul needs it. And it's something I realize my kids have been missing in their lives as I have pushed them so hard to keep up with - and be better at - X, Y and Z.

My husband, out of town this week, called. How is everything? How are the kids?

Best Monday ever, I told him.

no apologies

At 9:20 this morning, Dot called me. So sorry about last night, she told me.

Listen, I have dealt with every kind of sleep issue in this house and it's okay. I really love your son and he is welcome any time. This could happen the next dozens of times he comes over and it is seriously okay.

She burst into tears.

Dot... I murmured, speechless and listening for the longest while. Look.... Your kids are truly amazing and they are going to be okay! Any one of the kids could have gone home, last night. Hell, I was waiting for Jake to show up at my doorstep at 2am. He hasn't managed to make it through the night at anyone's house all year.

My son is not allowed to have any issues. He is just not.

Well, Dot, he's going to have them. Any normal kid should and its okay. I used to think the same thing about Jake, but it's not really fair, is it? They're allowed to have things they need to work out. And frankly, better when they're still at home and have us to help them than when they're already out of the house.... I have seen your son be so kind to Belac. I saw him wait for him and put his arm around him. Jake and your son.... They are better human beings because of their siblings and they have greater potential to grow up to be the compassionate men this world needs more of.

I could still hear her crying.

You know, any time you want or need me to take her and give you a break, send her. I am not scared and she'd be fine with me. She knows me now.

I wish you'd just move in, she sniffled.

You're doing an amazing job, Dot. Amazing! Look at your sweet boy. And see how your girl is now getting around by herself. Couldn't have happened without you pushing her and you being her mom. It's hard and endless, I know....

My husband left us because he couldn't deal. He blames me for her, never thought we should have had her, and then proceeded to wash his hands of all of us.  I never get a break. Gimky, you're not allowed to become the 95 percent.

Can't say we've never come close....

Hope you're all hungry, she said simply before getting herself together and hanging up, I've made a ton of food for the game!

sleepover prep

Belac 2/2012

It's almost 2pm and I feel the need for coffee. I don't normally have at this hour, but I've been prepping all day for Belac's birthday sleep over. The house is clean and the bathrooms freshly scrubbed. The table is set with balloons tied to each chair. And I just made up and printed out the new treasure hunt. My poems are lopsided and laughably bad, but the boys didn't seem to notice. I let them read one and I was glad to see they had to at least think a little to figure out the first clue.

Each kid is finding their own glow-in-the dark hexbug to keep. I also have all sorts of things for the kids to build obstacle courses for their bugs. I even have pink hexbugs for Lily and Izzy in an attempt to keep it all more gender-neutral. We'll have dinner, marshmallows by the fire, a couple of games and a movie. All of the kids are repeat visitors and only 1 of the five has never slept over. Hopefully, it will be an easy evening.

Our next door neighbor, Jake's buddy, came by for a visit. Jake you're sleeping next door tonight, right? I asked.

Yes, he replied.

But every time he comes over to sleep, he always ends up going home... his buddy pointed out.

I'll just sleep over tonight, Jake told his friend, matter-of-factly.

If I drink coffee now and keep drinking it, it will probably mean that I'll later find I shouldn't have because there will be no fires to put out and I could have slept like everyone else, right?

Wish me luck!

where to?

Hubby and I again ended up talking about the future, last night. And it still keeps coming back to if raising our kids in Sunny Patch is the right thing. If we're not going to look back in 1o years and regret it. He pointed out to me that wherever we go, the kids will not exactly fit in. But if we stay here, all of this effort for what? I had a hard time as a kid, I grew up in Sunny Patch....? Might as well be somewhere else that is interesting and not such an insulated bubble. Might as well be someplace where the kids can gain some meaningful and interesting perspective on life. Learn another language in practice, not just in theory. My husband can't seem to get comfortable with raising our kids in this environment and feels there is something wrong about all this. That our kids are not hungry enough and too comfortable. I kind of agree. But what the answer is, I just don't know.

by himself

Mom, I have to go! Jake told me as he abruptly left the kitchen.

But you're not done eating and it's only 7:3o!

I was 2 minutes late to PE, last time, he told me as he stuffed his lunchbox in his backpack. I can't be late again.

You were late? Were you ever late before?

No. Bye, mom, I have to go! See ya.... he called over his shoulder as he ran out the door.

What just happened? Really...? This is a kid who has always needed prodding. Who is always the last one in line and never in a hurry. For years, I have sent him upstairs almost everyday to put his watch on, begging him to rely on it, and dragging and pushing him out of the house on time.

So he was late for the first time, a few days ago, and got in trouble. And now he's taking some initiative and getting himself out on time? I should have let him be late years ago!

peace

This is an assignment Jake's been working on. He loves our old backyard, too!

My peace symbol by Jake Snowflake

Before we moved to Sunny Patch, we had a big apple tree in our backyard. This apple tree was very suitable for climbing because its limbs were very low. The apples it grew were as sweet as honey and its leaves were as green as grass. In that tree I felt peaceful. I would stay in the tree for hours swinging from its branches and I would look all around. When I was in the tree, I saw the world at a different perspective. I felt as calm as a lake. The reason why I chose an apple tree for my peace symbol, is because when I am in an apple tree I feel happy, just like peace does to everyone.

When I feel peace, I feel happy. I feel this way on weekends and when I am done with all of my homework. When I feel peace I feel glad, just like I do when I am free of responsibilities. I feel peace especially in the summer when I am free to run around and have fun. I feel peace also when nobody is mad at me, and when I get along with other people. It's not being lazy that makes me feel happy, but it's the feeling you get after you finish good work or after you tried hard at something.

An apple tree provides food, shelter, and shade. This is what people need to feel peace. An apple tree also needs three things; it needs soil, sunshine, and water. Peace needs things too. In order to have peace you have to work at it. This is the reason why I chose an apple tree rather than anything else for my peace symbol.

planning

Tonight, we went to the boys' favorite restaurant for Belac's birthday: the Cheesecake Factory. My husband's office used to be around the corner, and it was once easy for all of us to meet there when there was something worth celebrating with the boys. All was fine and dandy as we were ushered to a long booth, but then who would be coming to the table to serve us? Someone who was let go 4 years ago from my husband's company, after putting in 8 years, and someone my husband once worked with. He was such a nice guy, shook my husband's and my hand and was just so friendly. But it was also embarrassing that my husband's colleague was serving us. Though honest work, it was all just so wrong.

Yesterday, someone I knew only in the context of being my son's teacher approached me. She was friendly and chatty. It was unusual because we've only really talked about school and my son's challenges. Next thing I knew, she was asking me not to tell anyone that her husband lost his job over Christmas, and they still had kids to finish putting through college and... and your husband... isn't he in the same field as my husband?

No problem, I told her, let's put our husbands in touch. My husband will let him know if he knows or hears of anything....

It's a tough world out there. Tough enough for well-adjusted individuals with educations and experience. How in the world are my kids ever going to compete?

Today, my husband and I poured over the details of our mortgage and tried to figure out if and how we should refinance. Our plan is to sell this house in 9 years, if not earlier. Strange, how so unsentimental I am about this house. By then, Jake - hopefully -  will be two years into college and Belac - hopefully - will be on his way. One thing became so clear in our discussion. We want security and we want a plan for hard times. Peace is in the planning.

happy birthday!

Do you want me to walk with you today?  I asked, as we looked out the window to make sure the guard was there. No, Belac insisted, I can go by myself!

I watched Belac run along the sidewalk. There was a lot of traffic today. I saw him arrive at the corner, stand and wait. A driver stopped, in the middle of a left turn, waiting for Belac to cross before her. Another car in the opposite direction had its blinker on, waiting to make a right turn into this same street. The guard had his back turned and was talking to someone. He didn't know Belac was there. At least 5 seconds passed and Belac stood motionless, even though the drivers were probably motioning him to please hurry up and pass. I was so proud of Belac for just waiting and not caving to pressure. I had told him many times before. One driver says to cross, but the other driver might decide to go anyway. Always wait for the crossing guard to help you if he's there.

Ron! I could almost hear Belac call out, the way I had taught him. Can I cross?

The crossing guard turned abruptly to see him, hurried into the middle of the street and made a motion for Belac to cross, which he did. This morning, I saw Belac run up those 25 stairs before fading from view.

9 years ago, we sped across town in a cab. One push later, my Belac was here. Our family of 4 was perfect. But then autism presented itself a few years later, and I didn't know what to do with all of my expectations and hopes for him. He continues to struggle in school and to fit in. His attention is horrible and he can be very rigid. These are challenges not easily overcome much to everyone's exasperation. But if you had told me a few years ago that he could walk himself to school? Well, I would have had a hard time believing it.

No one knows enough about autism. Not even the experts. No one knows where he will land, not even me. I recognize that Belac's teachers are more skeptical, this year, as he struggles to manage 3rd grade. It can be hard to be like his sole cheerleader, some days, but I just push him along, anyway. What choice do I have? I am not leaving it to everyone else to tell me what my son can and cannot do. My husband and I are the only ones that are ever going to expect the most from him. We are the only ones that can believe in him meaningfully. And knowing that even if he has to be taught things that other kids don't need to be taught, he can and is learning! It wasn't a fluke. He got himself safely to school, today. Second day in a row.

Happy Birthday, Belac! You make me proud. We'll show them.