And miles to go before I sleep...

Very cool posts

2011-11-03T09:48:00.002-04:00

Head on over to 5 Minutes for Special Needs, for a post that says so much and is so real. It's about every-day life with an inflexible kid, and differences.

Also, here's an article about a kosher supermarker it Teaneck, NJ that provided meals for those without power. I have also hear of a couple of schools that have opened their cafeterias and gyms to families without power, and two that provided all students without power (in one case, all students, period) with free hot lunches.

Have a positive day.

After the storm...

2011-11-01T11:01:00.004-04:00

My internet got reconnected this AM, so here I am. Phones are still out, and probably will be until at least Friday, but hurray for cell phones and call forwarding (which Verizon actually got wrong three times, due to forgetting a "1" at the beginning of the number when keying it in).

And, of course, I am exceedingly grateful for the electricity that charges those phones, and runs everything else in my house too. Shout out to all those out there who still don't have power. The family who was staying in our basement got theirs back overnight- we'll miss them, but happily. (One of the boys in M.'s class calls himself a refugee. They were planning on staying put at home until the baby woke up the first morning blue in the face.)

S. gave me a science lesson as to what happened here. I knew that when it snows on a bunch of trees that still have leaves, those leaves will catch more snow, thus making branches more likely to fall. But apparently, the sap in trees tend to use fall to run back into the trunks and larger branches, strengthening them.

And since we didn't seem to get much fall, the trees are actually weaker. Which is how four to six inches of snow can make large branches bend, and split a tree so that each branch falls and splits off in a different direction. And how on almost every block, there's a tree on a car. And the street sides are lined with fallen pieces of trees. And there are fallen power lines all over the place, and... The cleaning up is taking ages, but how could it not?

So that's the science of snow in October. But there is, of course, more. My neighbor said to me, "Hashem is reminding us that He runs the world." I answered back, "Yeah, He's been doing that a lot this year." There has been so much weird weather in weird places, places that aren't prepared for it because it's unusual. And now in weird times, when not only the people and man-made structures but even nature isn't ready. For a farmer, that can mean the end of the crops they've worked for all season. Here, it means chaos.

So I think the world is going somewhere different now. Not that things like this have never happened before. But with so much... it feels like the world is at least somewhat reverting to the chaos in which it started. There's a major transition coming. I feel it. I don't know what it will bring.

Hopefully something amazing. Because if there's one thing all people have always been able to talk about, it's the weather. Things like this bring everyone together. Let's see what happens now.

I can stop lying to my child now.

2011-10-27T09:55:00.002-04:00

Wow, long time no posting. Holidays, craziness...

The meds saga continues. We have E. on a supplement that has to be taken morning and night. We open up a decent sized capsule and mix the powder with food, not drink. It has a mild taste, but if the food is strong-tasting he doesn't notice it much IF he doesn't know it's there.

So for weeks, I would serve him food he's perfectly capable of getting himself, then send him to the next room, and mix in the stuff. And if he noticed it visually, I would lie to him and tell him it wasn't there. Because I needed him to take it.

I didn't feel good about it. I don't like lying, especially not regularly. It has to happen every so often, but I don't like it. So I am now so thankful that I have found a way to convince him to eat the food even if he knows it's there.

Basically, I told him the truth. If he takes it regularly, he may eventually get to eliminate one or more of his other meds. He hates the Straterra worst, but I was honest that it would probably be the last one to disappear. E.'s doctor has high hopes for this supplement, and we've already seen some nice results. So...

We pray. But things are going... I'm afraid to say alright. He had a major fit in school yesterday, but came out of it OK. So... we go on.

A new year...

2011-09-28T07:28:00.002-04:00

I wish you all a great year to come. The idea of renewal is so powerful, but the process of starting again, especially since the work is always harder than if you'd started that way in the first place, can be daunting. So once a year, whenever it is for us, it's so good to take stock along with those around us, all of us together, and take a step in a new direction.

May we all be able to move ourselves where we need to go.

Meal planning, Afloat style

2011-09-22T20:56:00.003-04:00

This is not a post about planning out your family's meals a week or weeks in advance and shopping accordingly. I am not and will probably never be that person. And it's not about planning out all the meals for the approaching three-day-yom tov (holiday). I am that person, but I'm a little behind this year.

No, this is about planning meals around meds.

E. has begun a supplement that he has to take in the morning and at night, with food. It's a fairly large capsule full of powder, and since E. can't swallow a sprinkle, we open it up. For whatever reason, it doesn't dissolve well in liquid, so the old grape juice standby is gone. We have to dissolve it in food.

It isn't nearly as disgusting as his Strattera, but it does have a taste. I tried apple sauce, and he hated it. Tried his favorite mushroom-barley soup- no go. Putting it on top of a solid doesn't work because it has to be hidden; if he knows it's there, he won't eat it.

So what works? Spaghetti sauce and chumus (aka hummus). That seems to be about it.

I repeat- he has to take this every day. And he has to take all of it. I can get him to eat chummus every morning, or at least most of it, as long as I have Wheat Thins. And if I get it to him just when he starts looking for food to eat. But the spaghetti sauce is easiest served on pasta, which I don't always have. So what do I do? And what if he's not in the mood for chummus? Or to eat his pasta?

So I came up with strategy. The supper must be served the second he walks in the door from school, so that he doesn't eat anything else that might spoil his appetite for what I want him to eat.

And the capsule has to be dissolved in when he's not looking, which is easy with dinner because I do it before he gets home but not with breakfast, where I have to block the food with my body and ask him to get me something from the next room. Which can backfire if he gets interested in something there and decides he doesn't want to eat anything anymore.

See? Takes lots of planning.

A call from school.

2011-09-21T13:27:00.002-04:00

There should be a special word for the feeling you get when your kids' school shows up on Caller ID. And a super-exaggerated version for when it's the principal or the nurse.

I love when a teacher calls and says right off the bat, "Hi, this is Mrs. Weiss, everything's fine." The nurse did that for me once or twice when she was calling about forms. But mostly, when she calls, I need to come get someone. S. in particular, when she had her minor health scare last year, caused a whole spate of that particular anxiety.

I would pick up the phone and say, "Hey, what's going on with her?" Sometimes I'd have to go get her, sometimes it was just to alert me about difficulty she had. Either way, I worried the rest of the day.

Now I have a kid dealing with asthma. Thankfully, there's no major danger. But it's frustrating to watch my child go through an ER visit and multiple nurse's office visits for the nebulizer, some planned and some not. Every day I get a call: "Your kid has been in today." Sometimes, that means the day is over. Sometimes it's back to class, but again, the worries.

I wonder what life was like as a mother before Caller ID? When you didn't know who was calling until they actually spoke to you?

I'm surprised it took so long.

2011-09-13T20:55:00.004-04:00

Maybe I'm blocking something out, but to my current knowledge, The Little One is officially the first of the Afloat brood (parents excepted) to cut their own hair. She had a pair of child scissors and was confettying a piece of yellow construction paper, so I let her be. Later, I found a few small curls of hair among all of the yellow.

Luckily, she didn't take off much, and you can't really tell. I'm hoping this is an only time and not a precursor to what I did to myself at around age 4 or 5, which involved much screaming by my mother. I calmly told her not to do it again, because we don't do that. That's the thing about hair-cutting, both of self and others: in most cases, we've never told them not to.

The Little One has in general become fairly defiant. She hits when she doesn't get what she wants, and won't stand up if she wants to be carried. Luckily, she's still awfully cute to people outside the family, but at home, she can be a handful combined with E. She wants what she wants when she wants it, and he needs me when he needs me, whether he wants me there or not.

This is a stage, I know. For both of them, I guess. I wonder which one will last longer?

Ten years ago...

2011-09-11T12:52:00.009-04:00

S. was in preschool and I was taking a course in the city (aka Manhattan). I dropped off her carpool and drove to my bus stop as usual, to take the 9:00 or 9:10 to Port Authority followed by the subway to my school.

As I drove, I put on the radio to check the traffic. But instead I heard the news. Unbelievably, I got out of the car and went o wait for my bus anyway, as did about twenty other people, until a bus came in the opposite direction and informed us that Manhattan was closed and we should all go home.

I spent the rest of the morning glued to the TV and radio simultaneously. My husband worked in the city at a company that had affiliates in the towers, and I have a close relative that worked near the Pentagon. Cell service was insane, so it was hard to reach them, but I did. He did make it home that night, eventually.

As much as I wanted to just hug little baby M. when I got home from the bus stop, I let him stay at the park with his babysitter rather than spend the morning with a frantic mother. I went and got him when S. was sent home early from school, partly because of security concerns for known Jewish institutions. A week later, on Rosh Hashanah, there were police cars all over our neighborhood patrolling to keep an eye on the shuls (synagogues).

This past Friday, S. came home from school with a list of questions and an assignment to do an oral history project with her parents and relatives regarding 9/11. She was in pre-school then. She's in middle school now. A lot has happened in those ten years. Yet when I sat with her to tell her about the day, it all came back.

What do you remember most, she asked? Feeling frantic, because things kept happening. One tower hit, then two, then the Pentagon, then maybe an explosion in DC that turned out not to have happened, then a tower collapses, then a plane crashes that was meant for the white house or the capitol, then the other tower collapses. And then a week later, when we begin to catch our breath between sobs, anthrax in the mail.

And it stuck, for a long time. For weeks, we could see the smoke. Months later, there was DNA evidence for our friend and there was a memorial And later that year, I attended a dinner at Terrace in the Park, a hall in Queens that extends up into the air and is walled by floor to ceiling windows. It is also near two airports, and every time I saw a plane, I got scared.

What did you learn from 9/11? That the world is not a safe place, anywhere. I knew it in my head, but it didn't apply to me, here until then. Not until I felt the fear, lived through it, lost someone I knew pretty well. Girls my age weren't supposed to be widows, especially like that.

May we not know from things like this in the future. May our kids continue to ask us questions, because it's history to them and they can't relate. May the lion lie down with the lamb.

Reflections on lack of control.

2011-09-08T22:01:00.004-04:00

They've all gone back to school.Officially. As of today. Full days for everyone. I ate breakfast this morning before noon.

I have seen just in the past few days that there are things I can control and things that I can't, no matter how important it seems to be that I should be able to do so. It has always been important to me that my kids have predictable and prompt routines for the first few days of school. This is clearly of primary importance with E. So for his first day of school, I left as early as I could to get his whole carpool there on time. And it should have worked.

Except for the rain. So much rain. It feels like it's been raining for a very long time. Between Irene and now this "edge of a tropical depression", the ground is full and the floods are here. We have been blessed so far not to bail out feet of water from our basement, but the traffic!

I managed to get the kids to school under five minutes late instead of the ten minutes early I'd planned. The next day, in yet another torrential rainstorm, my fellow driver could only manage forty minutes late.

When I found out he would be so delayed, instead of fretting and worrying over it like I usually do until it eats into everything I do, I davened (prayed). Nothing long- just a couple of perakim (paragraphs) of tehillim (psalms), said with everything I have. "PLEASE let him still have a good day. Please let him not melt down. Let him not ruin his new teacher's impression of him this early, when it can stay set for the year. Please."

He was fine. As was T., when she was given a desk all the way in the back of the room this year even though she can be shy about speaking up for her needs. I wanted to ask the teacher right away to switch her, but the husband said, "Give it time; lets see how she handles it." And not only does she seem to be fine, she also seems to have been asserting herself more and has made a new friend even though the girl sits all the way across the room from her, and in the front row.

I worry. I always have. But sometimes I have to let it go. To have faith in Hashem, and in my kids despite their weaknesses. And it's hard, because my having that faith won't necessarily make it turn out OK, and because there are so many things in my life that I can't just sit back for.

Some people need to learn to assert themselves more, to be more invested in it all. In many ways, I need to learn to do the opposite, to let go. Hard to do, but on the back end, so much easier.

We're fine.

2011-09-04T14:09:00.002-04:00

Sorry to keep y'all hanging. We've been away this past week. But Irene didn't hit us anywhere near as hard as it was suspected it would. There was flooding and downed trees, and some power outages, but that just makes it a run-of -the-mill bad storm.

We got away on Sunday, just as we had originally planned. When we came back, we realized that we forgot to empty the bathtub we'd filled with water before the storm came in. So so glad it wasn't needed.

I am beyond grateful to Hashem, and my heart and prayers go out to those hit harder.

Finished shopping.

2011-08-26T13:19:00.004-04:00

Six jugs of water plus a giant case of bottles, check.
A bagful of large, jar-style candles, check.
Batteries, check.
Tankful of gas in the car, check.
Treats for the kids, check.

Hashem, I did my part. the rest is up to You.

There's a hurricane coming.

2011-08-25T19:07:00.002-04:00

When I was in the eighth grade, there was a hurricane headed for my area. The administration of my school followed the weather reports carefully, and a little before lunchtime on that day, they sent us all home.

Pretty much as soon as we all got there (it took some doing to get at entire school home mid-day on an hour's notice), the skies cleared up. Turns out, the hurricane turned out to sea. We all called each other and got together, laughing about how we had a half-day of school cancelled because of a storm that never came.

Ah, the innocence of a middle-schooler who has never seen a real storm. That was all we cared about.

I have never been in a hurricane. I've caught the edge of of a few, and had some major rain/windstorms that have taken down trees all through my neighborhood, put a few through people's roofs and crushed cars. But I've never actually been in a hurricane. And I'm hoping I don't have to start now.

My friends and I like to talk about the weather benefits of the Northeast. The midwest is crazy-cold. LA is nice and mild, but there's smog and earthquakes. Go too far north on the east coast and you get too much snow. Texas... so hot. Florida's great in the winter but crazy in the summer, and they have hurricanes. The lower Northeast, in the NY area, has sort of volatile weather, but nothing dangerous. Right?

My brother was in a tornado about ten years ago. Other relatives in the DC area just went through an earthquake. And none of us want a hurricane.

It's Hashem's world- he shows us that more and more as we try to predict and control it. Sometimes I get pretty scared. We're not in plywood territory, and nobody's evacuating us, but if we'd been down on the Jersey shore like we were this time last year, we'd be leaving now.

We'll see, won't we?

Dirt and twigs.

2011-08-24T15:43:00.003-04:00

I've been sending kids to camp for several years now, so I figured I was all set for how to deal with laundry. I have my order of getting it done, and I know the tricks: the duffel goes straight to the basement, use baking soda to take away the camp smell, etc. Presto- clean and fresh laundry, a day and a half later! I gave my friend, mother of a first time camper, lots of advice about it recently.

But this year S.'s bunk was out in the woods, and her stuff came back covered in pieces of twigs and leaves. It's all settled in the bottom of the washer, and the things that didn't have stuff on them acquired it in the machine. As of now, I'm praying through laundry cycles and picking things off bit by bit until I find a better way- do I need to shake each piece out in the yard before it goes to the wash?

Once again in life, I was convinced I knew it all, and life threw me a curve ball.

Don't we all feel that way sometimes? We've got the whole rhythm of life going on, and then we feel like someone's dropped a bucket of dirt on it all. A whole bunch of that has happened to me lately.

I'm dealing with transportation issues for E. that I've had for awhile and I thought were set, but then exploded. I stressed over losing the status quo for months, until I just let it go and surrendered to setting up the new and making it work. I have another issue dealing with construction going on near my house which may affect us. Railing against a change from the old isn't going to help. I have to somehow create a workable new, and only when I put all my energy toward that will I get somewhere.

The new is almost always scarier than the old, even if it's better. But often it's worse, or more effort- or time-consuming. But if we define anything given to us by Hashem as good, than harder is still good. And we've got to make it work, somehow. Even though the past and the usual sticks to us so much, like little barbed twigs.

My dad told me yesterday that if we truly believe that everything we have in life is sent to us to perfect our souls, we will never be jealous. I am not there yet. I am not even near there. But I can try to deal with changes without sticking to the past too much. It will just anger and annoy me, and sap energy I need for other, better things.

'"I'm going to bed now," said E.'

2011-08-17T20:31:00.003-04:00

Lately, E. has been narrating himself. We don't know why. I've never even heard of this.

In a way, it's the opposite of the scripting thing he sometimes does and used to do often. Scripting is when you take entire lines and phrases out of books, TV shows, etc. and use them in your daily life. Sometimes it's appropriate (E. once said "Wendy waters purple flowers!" when he noticed flowers at age 4, and lately will say lines that make sense as replies, but we know they're verbatim from Curious George, or whatever.) Sometimes they're not related at all- just mutterings, often.

But now, he's making his own life into a book. I find it usually happens in a gap. He'll tell me something, and if i don't respond right away, he'll add, "said E." And then tonight, M. did something to upset him and he screamed loudly, as he does. And then, in a calm voice, he said, "E. screamed." As in,' "AAAHHHHH!", E. screamed.'

So weird. Why is my kid so weird sometimes? It's cute, but... weird.

!!!!!!

2011-08-12T16:07:00.002-04:00

Today, while I was getting ready for Shabbos, M. came over to me and said, "Ima, you look stressed out. How can I help you?"

!!!!!!!!!!

Did I mention he's a preteen?

He proceeded to help set the table, carry a load of things to the basement freezer, and, under supervision, bake a cake.

!!!!!!!!!!

E. relates.

2011-08-11T15:00:00.003-04:00

Remember how the Little One missed her brothers when they were at camp? How she got so sad?

The boys were told about it, and thought it was cute. At least, M. did. E. just smiled and moved on. But last week, when we were on our way home from visiting S., and the little One was kvetching, E. leaned forward and asked her, "Are you sad?" And in a broken voice, she said, "Yes (sniff)".

Of course, he said it with a smile, because he was pleased with himself that he remembered. Which was a little disconcerting. But I was so pleased with him.

Another small yet important thing:

We recently had ourselves a fast day, Tisha B'Av. E. likes to be big, so we told him that if he likes he may fast from the beginning of the fast day (8PM at night) until breakfast the next morning.

That involved one hour until he headed off for shul (synagogue), and then five minutes before bed. Doesn't seem like much for a kid his age, but he eats a lot, both because his meds make him hungry and because he eats when he wants, without the intermediary thought of, "Do I have permission?" or "Now that I took my food, should I close the fridge before I eat?"

At 8:10, E. wen to the fridge, out of habit. He opened it, looked inside, and stopped. Then he closed it and asked me, "Ima, since I cannot eat, what should I do?"

Impulse control for a higher purpose. So cool.

What would you give up sleep for?

2011-08-03T11:58:00.002-04:00

I am tired, very very tired. Overall I haven't been getting enough sleep lately, both because of actual events that have gotten me to bed late and because of being anxious about various things (E. related and not.) that have come and gone. The stresses and lack of sleep have combined to make me disconnected, irritable, and picky. I don't like it, but it's hard to get out of.

Two nights ago, I was up crazy late waiting for the husband to come back from driving S. back to sleep-away camp after a brief visit home to see the doctor (she's fine). So I wanted to get some sleep the next night; I could feel it in my body. But, I had a meeting scheduled for my special needs mom support group. It's been awhile since I could go, and I really really wanted to go and be with these wonderful women who are so wonderful for me.

So I got myself out of the house, and talked and talked and listened and listened, and we all laughed a lot, which we love to do, both at ourselves and at the foibles in others that we see in ourselves. And within the first twenty minutes, I felt all of the tensions of the past few weeks dissipate. Despite feeling exhausted, I was more at peace and connected than I'd been in days.

This morning, instead of taking a nap, I went to a shiur (Bible lesson) that I've been meaning to go to forever. In the Jewish calender, we're in the middle of a pretty important week for self-reflection, since it commemorates a difficult time in our history. The topic of the talk? The dangers of complaining. Which I've been doing too much of.

I need sleep. I know I need sleep. But I also need to feed my soul. And I need to maintain my friendships, no matter how hard it is, and sometimes it is very very hard. But our Talmud tells us, "Oh chevrutah, oh mitutah," being without friends is like death. Which any teenager will tell you, but it applies to all of us.

Other reasons I've recently chosen to give up sleep include reading a good book just to have me time, eating dinner (at 10:30), and actually having a conversation with my husband after a long day. And sleep is very, very important to me. So....

What do you give up sleep for?

Two in, one out.- An update

2011-07-27T10:56:00.002-04:00

After just a day and a half of all of us in the house, S. is off to camp for the month. She's going with her two best friends, but they don't actually know each other (yes, they all live in the same town), so I hope it goes well.

I'm going to miss her. She's been around a lot the past month, just hanging out around the house. We've gone shopping for all the stuff she needs, even though we're not big shoppers. We did painting pottery together, just the two of us, which let both of us actually paint. We learned together. I rely on her a lot, too, so I have to adjust, but that's good, for both of us.

Yesterday, against her protests, I took her school supply shopping ( I know, I said the "S" word). The sales are on, and all the stuff she wants won't be there anymore until she gets back. Then she finished packing her backpack, and off she went.

Meanwhile, I find myself snapping at E. I'm just not used to his mishegas. This morning his carefully chosen T-shirt got all messy when he wipes his salsa-covered hands across it after he ate breakfast, and he had to change. Not unusual for him, but I was annoyed. And he dumped out three big containers of toys onto the floor of the basement we just cleaned up and out.

But he's loving his day camp, and apparently doing well. As is M.. May it remain so.

Finally, we find we have to be very careful when we say someone is going to camp, when the Little One is around. She knew the boys were "in camp" the whole first half, so now when they go to camp in the morning, we have to say, "They're going to day camp- they'll be home for supper." And we specifically told her that S. was going to sleeping camp today. We'll see how she deals with that.

Three loads of laundry down, with baking soda.

2011-07-25T20:01:00.003-04:00

Two to go, I think.

The boys are home from camp.

Within a minute of his entering the house, E. was off and running. He got himself food. He found his DS. He asked to use the computer repeatedly. He opened and flipped through a bunch of books. He looked into two packages that are for other people in the house. He went into his sisters' room "to see what was different there" and removed T.'s newly made-in-camp puppet theater, and the Little One had to go into his room and take it back.

Tired yet? It's like taking a deep breath and never letting it out. And it's my every day.

You forget, when it stops, even for a little while. The constant awareness and regular interventions sap away a sizable portion of your mental energy and strength. And the chaos in the house that results from the behaviors, the random food left out on the counters and on the playroom floor and the instant messes of toys and who knows what else in every room, it erodes your mental order.

I didn't realize until he ran in the door how relaxed I've been for the last month.

Don't get me wrong; I missed him. Just as he adds chaos to the house, he also adds a beautiful brightness and enthusiasm. For four weeks we had a lazy river, and now we're back in the wave pool. I love wave pools because of the unpredictability, the adventure, the highs that you only get when you have the lows.

But it's hard to spend all day there.

My smart, smart boy. And his smarter camp.

2011-07-20T17:15:00.002-04:00

The husband got a call from E.'s camp today. Apparently, there was a hay ride scheduled. E. told them he couldn't go because "I'm allergic to hay."

I don't know if he's heard and internalized the term "hay fever", which all the girls in the family have but none of the boys (ba"h), or if he just got lucky. Either way, the camp actually took him seriously, as they should.

BUT, they also knew who they might be dealing with, so they made the phone call. And this was without actually knowing that E. has used the "I'm allergic" thing before. In our fairly allergic family, and in his various classrooms, he's learned that allergies are an automatic out. He once got the cupcake he wanted at school because he said he was allergic to chocolate, and at someone else's house he got them to make him a different dinner because he said he was allergic to the main dish.

The husband told them that E. is not allergic to hay. We assume he went on the ride.I hope it went alright. Another acceptable alternative would be if they taught him to just say, "I really don't want to go" or "I'm scared" and then processed with him, letting him stay off if it was indicated.

Either way, good job camp. And hurray for my smart boy, who looks like he will be just as confounding as he becomes more and more a "regular" kid.

A beautiful thing- may it harken better days.

2011-07-18T09:44:00.001-04:00

Blast from the past.

2011-07-17T07:42:00.004-04:00

While cleaning up in the basement, I came across one of E.'s communication book from his preschool. Most days, his one to one would write us a note about what was going on, and maybe his therapists, teacher, special ed supervisor, etc. And we would write back about what was going on at home. This notebook ranged from February to October of '07, when he was four and early 5.

It reminded we of so many things I've forgotten about, so many hurdles we had to overcome. Take this note that I wrote:

"Hurray! Last night I poured E.'s milk into the cup before I put the straw in, and he drank it anyway!"

Basically, for at least a year, he was into drinking his milk with a straw, but we HAD to put the straw in the cup first and then pour. We found this out through tantrums he would throw when we messed up, including falling on the floor and screaming, and then he would pour the milk out and tell us to start again.

I chalked it up to rigidity and routine; things had to be done the same way each time for him, a lot. But one day S., who was eight at the time, told me that E. liked to see the straw "wiggle and dance" when the milk was being poured in. (If you held the straw while you poured the milk, a similar tantrum ensued.)

Huh. And she remembered that, yesterday, when I told her about this note; I had forgotten.

So often, we have no idea what's inside our children's heads.

Trying to get some control...

2011-07-13T16:29:00.009-04:00

T. came home from camp today with the following note:

Dear Parents,

To ensure the safety of all our campers, please list below who you allow you child to go home with... If your child is walking home, please sign below. Please note that once campers are off camp premises, camp cannot be responsible for them... Any pickup changes must be submitted by writing or email by mid-day.

We did this already, before camp. We submitted drivers, and signed off on everything. But I'm thinking that this is both for the camp and the parents. It gives us a feeling that we're taking some control of our child's destiny.

In 1994, a New York high school girl named Suri got lost on a school trip to a state park in Connecticut. Thousands of volunteers helped law enforcement look for her in the woods. In an open miracle, she was found safe and sound three days later. At the time she was lost, she had with her a jacket and food, and she was old enough to have an idea of what to do. Still, it was such a big deal that it is always in my mind. Good outcomes can happen, against all odds, in our days.

Seventeen years later, we were all watching and praying for Leiby. Leiby, who was the same age as E. "We have to pray. He can be fine!" I told S. "Suri was fine. Three days! People were giving up on her!" But Leiby was only eight, and got lost somehow during a seven-block walk home from camp on populated streets. So he asked someone for directions.

Leiby was not found safe and sound. Someone decided to end his life. (Don't click if you don't want to know the details.) Hashem had a different plan that I do not get at all.

I talked to T. this morning, reviewing all of our safety procedures, including the family code word. E. is not home for me to talk to, but I will review with him when he gets back. Parental control, remember? It's all I've got.

Here's a little more. Here's a short, 8 minute video on how to talk to your kids about what happened, and death in general. It's by Dr. Norman Blumenthal, director of Chai Lifeline's Crisis Intervention Team.

I am confused. I am horrified. I am adrift. And I still believe in miracles (which is so much easier to say when it's not your kid.) May none of us ever know from this type of thing again.

P.S.- Mystery Woman discusses this today. Her son goes to Leiby's camp. The world is small.

"I miss the boys!"

2011-07-11T12:24:00.003-04:00

We bargained for many things when planning for Visiting Day for M. and E.: traffic both ways, the challenge of giving enough individual attention to each one, finding everyone I needed to talk to, the possible need for changes of clothes for the younger girls. But we missed two things.

One, we should have gotten. T. almost couldn't go because she was sick the night before. I would have cancelled any playdate for the next day, and stayed home with her from a family outing. But the boys were expecting both parents, and it was especially important for E. on his first visiting day. It also would have been very complicated to deal with both boys with only one parent.

In the end, she had no fever in the AM and wasn't throwing up. I gave her Motrin and ginger ale, and she was perky by 9AM, so we all went. Phew!

Unforeseen #2: the Little One. At the end of the day, she refused to go home. (S. said she sounded like campers on their last day). I originally thought she was having fun and home was boring. But we quickly figured out that she genuinely misses her brothers.

She didn't give them too much thought for the first two weeks, because they left while she was at playgroup-camp. But now she remembers. M. had always loved her and done fun things with/for her, and E. has recently been very big-brothery in playing with her- they're on a similar wavelength sometimes.

So she misses them. After crying herself to sleep in the car, she wandered around her room last night and woke up this AM fine. But two hours later, she randomly almost dissolved into tear, and said, "I miss the boys!" I guess now we've given her words for something she actually may have been feeling before.

Hurray for siblings who love each other.

Selective communication.

2011-07-08T08:27:00.002-04:00

When E. was a young pre-schooler, getting him to talk was a big deal. While he often talked to himself in full sentences lifted from videos, he only spoke to others if it was completely necessary. And by that I mean, if it was the only was to get himself something.

Being a resourceful kid, when E. wanted something, he would usually go and get it himself. Food? He'd open the fridge, despite whatever fridge-lock was in place that week. CD? Off to the top of the bookcase he would climb. Go outside? Out he would go. He would talk to us if he couldn't manage something himself, and occasionally, if something hurt, he would tell us.

It took time and training, including inculcating the value of communication exclusive of personal immediate need, but he now converses to converse. (He still doesn't have down the idea of talking to someone just for their own sake, in the way they would like, but he will bring them objects or say stock phrases that are known to help.)

I thought of this just now because of a phone call I got from M. in camp. Visiting day is Sunday, and we'd told him to call if he wanted us to bring anything up. So the phone rang yesterday afternoon, and the Caller ID identified his camp, and this is how the convo goes:

"Hello, this is M. calling from camp." (That was M. himself. Very business-like.)
"Hi! How are you?"
"Good. Ima, when you come on visiting day, could you bring oatmeal cookies and the strawberry ones?"
"Sure."
"I've been eating them a lot because everything here has milk or sesame seeds." (Both allergies of his.)
"No problem. How's everything going?"
"I can talk to you more on visiting day. Goodbye!"
"Bye!"
Click.

Perspective point one: I was paying for this call, not him.
Perspective point two: My dad always says, when guys talk to guys, the phone is about accomplishing a purpose and being done.
Perspective point number three: There may have been a line for the phone, plus he had other things he'd rather be doing.

I wonder. Four our of five autistic kids are male. Now, I'm not doubting the diagnosis. But how much of some of the communication issues are impacted by boys being boys? And the majority of their therapists being women? Food for thought.

Have a good weekend! (And a good visiting day, if it applies.)

A conversation with the Little One.

2011-07-06T15:49:00.003-04:00

"T. is my mommy."
"Am I the Ima?"
"T. is my mommy-Ima."
Huh. "Who am I?"
"You're mustard."

Background- A few months ago, we were trying to reinforce her being able to tell people her name when asked, in case she gets lost. At some point, she must had gotten sick of it, and she responded to "What's your name?" with "Ketchup."

She stuck with it, and soon enough, everyone in the family got nicknames too. Hamburger, hot dog, mayonnaise. And I am mustard.

I love so much that she has a sense of humor. I sense the inherent sarcasm in her two year-old jokes, and I know she'll be keeping us on our toes for years. She's got people skills, this kid. She is a classic youngest milking us all for all we're worth. She chooses her favorite mother at will.

You need fortitude to raise this kid. I think that if she were kid #1 or #2, I would be out of my league. Now, I have a fighting chance. It helps, tremendously, that I appreciate her mastery of those people skills, even as she uses them to manipulate me. And I appreciate them to the extent that I do, because of E.

Addendum- the good in it all.

2011-07-05T21:31:00.003-04:00

Because I need some positivity:

a) This could have been a lot worse. I'm grateful. And if our non-catastrophic experience helps someone else avoid one that is that bad, then good. (And yes, I will raise all the ruckus needed to change internal company policy. I'm good at ruckus- I've been trained by life.)

b) Believe it or not, I am grateful that my insurance turned down my kid's vacation override for his meds. Never thought I'd be happy about that, but if it hadn't happened, we wouldn't have known about the dosage mistake. We are taught that everything in this world has a positive use and purpose; I've just found one for insurance denials (it may be the only one.)

Incidentally, this also partially vindicates my tendency to ask a million questions when confronted with a simple fact that is inconvenient for me. A regular person would have heard, "Go call your insurance company to get approval" and said, "OK," and then done it. I asked for clarification, and why they only turned down the one med and not the others, and more questions, and eventually the poor man just read me my prescriptions and the text of the refusal, and it all came out.

So hah. Being an over-questioner who raises ruckus can come in awfully handy.

Medication meltdown madness.

2011-07-05T14:08:00.003-04:00

E.'s sleep-away camp uses a pharmacy service to provide the kids' medications. I'm used to bringing prescription bottles up and handing them to the infirmary, but this time we had to send prescriptions away to the service and they package it up and send it over.

Theoretically, it should be better and safer. Each day's meds are in a single blister pack that just gets opened and taken, and a record is kept. But, should is a beautiful word. We've already had issues with supplements they couldn't get, and extra fees, and changed prescriptions because they need to be submitted so far in advance.

But all of those are nuisances. Today, it got dangerous.

We had a changed prescription because of a lowered dosage. Instead of replacing the old one, the service added the two together, leaving E. with a triple dosage of one of his meds. For almost a week, until we caught it because of an insurance problem.

Thankfully, after twenty frantic minutes, I confirmed with E.'s counselor that his behavior hadn't deteriorated to the point that he'd have to go to the ER. Also thankfully, it's a fairly forgiving med, despite the fact that bumping him up to his past dose sent him into meltdown. We have to adjust his dose now, but it should be OK.

Perspective: If this med had been clonidine (a blood pressure medication commonly used for behavior issues and sleep), or Risperdal (an anti-psychotic used very effectively for behavior and impulsivity), E. might be in the ICU, God forbid. If, with this med, we hadn't found out until the end of camp or never, who knows what would have happened.

I have talked to the drug service, the camp infirmary, the counselor, and the doctor, along with his fabulous secretary. We've almost got it settled. And my pulse is starting to reduce, slowly.

Suddenly, I can begin to relate to Single Dad (check out his accounts of how his daughter's nurse doesn't give her medication.) Special needs kids can't/don't advocate for themselves. They're on powerful medications. They rely on multiple people to take care of them. Those people cannot, and should not always be me. I train people the best I can, but they are people. I need to be more on top of things, to check more so the mistakes won't happen. And I need to daven (pray) more. Because there's only so much I can do.

My challah bowl broke.

2011-07-04T20:32:00.003-04:00

When I started making challah regularly, I wanted to do it at the volume needed to get to do the mitzvah of separating off the small challah portion with a brachah (blessing). (If you're completely lost, click the "challah" link and scroll to the bottom section, titled, "The special mitzvah of challah".) That uses a full five pound bag of flour, so the bowl has to be big. Many people use a large mixer, but I like to do mine by hand.

I had a wooden salad bowl I rarely used because of how big it was. Slowly, over the months, it transitioned from a salad bowl to a challah bowl, and it gained scratches and character. Every two weeks, there it was on my counter, on Friday afternoon, a mound of dough puffing up just over the rim.

Unfortunately, I didn't take care of it the way I should have. I didn't always wash it out just after I finished with it, so I ended up soaking it to get the dried on dough bits off the edges. Occasionally, it would get left in the sink when there was an inch or two of water. None of this is good for wood.

A couple of months ago, I noticed that the bottom had pushed itself out a little and there was a crack that water dripped through. Each week, I put another bowl under it until the dough built up, and reminded myself to crazy-glue it in the coming week, but I never remembered. And this past week, the bottom just popped out. And I just couldn't believe it.

That bowl has served me well for seven or eight years. It helped me do a mitzvah that is one of the three main commandments for women, that is thought to sustain a household- after all, the bread represents the sustenance of the home. I try to pray while I knead the dough, letting my frustrations change into the effort needed and asking for help for myself, my children, my loved ones, and complete strangers who I know need a hand.

I cannot let that bowl leave quietly. It's not like the glass bowl I lost. It's something more. I really want to find a way to fix it. I used a regular plastic mixing bowl last week and almost wanted to cry, though the challah came out well . I guess it's all in the intention.

The day after- E. is settled, and I'm... ?

2011-07-01T07:23:00.002-04:00

I'm trying to remember last year, how I was the day and day after E. went to camp. I think it was unreal. Last night, I kept thinking, "Time to give E. his melatonin before bed" and "Where is he, and why is he so quiet?" But he's not here- he's there, in camp, and someone else is dealing with all of this.

Hopefully. I filled out reams of paperwork, detailing things like meds. I gave his counselor a cheat-sheet on behavior and life skills, so he knows what E. knows. But on the first days, things are always weird, and I'm hoping his meds are on schedule. His melatonin has to be just before bedtime, which mean the nurse probably isn't doing it, and I just hope they got it to his counselor at the right time, or nobody in that bunk got any sleep last night.

And this morning... they are learning about my son. At his other camp last year, I asked what E. would do when he got up between five and six AM before everyone else. I was told that the camp schedule was so full that kids slept later. Not so, apparently. "All the kids got up before the counselors," E. told me. The counselors left out drawing material and a few games. The boys apparently used their cameras and electronic games (thankfully not permitted this year) instead.

So somewhere in the Catskills, there's a young man wondering why it has to be his camper who has woken up at 5AM camp time, for the day. "But at home it's in the sixes!" I can hear E. saying.

The counselor texted last night that E. is happy and doing well. Let it remain so.

E. goes to camp. And personal safety.

2011-06-30T07:30:00.003-04:00

Sending E. off today. Nervous, but excited. He's packed, I spoke to his counselor yesterday, off we go.

I also had the talk with him. THE talk, the personal safety / abuse prevention talk that you should have with all your kids, especially before they go away. I have done it regularly with M. and S. each year before camp, at appropriate age level, with tweaks. I've learned a lot about this, recently; last year I added that if something happens, they should go straight to their division head, bypassing the counselor. They should not only report, but demand to call home.

This year, I found a fabulous talk given by Rabbi Yaakov Horowitz of Project Yes. I'm sharing it with you:

Speaking To Your Kids About Personal Safety from Yakov Horowitz on Vimeo.

E.'s version of the talk, I figured out from the video and from what I've learned overall about inculcating a concept with him. I have no idea if it will work. I recently read a blogger (Sorry! Don't remember your name or url.) who discussed the terror of nerves that can go with sending a special needs kid to camp, because they can't/don't report back to you if something goes wrong.

Thankfully, my kid is verbal, mobile and basically aware. But it's obviously not the same, and he's definitely more likely to be overly trusting of adults, like a pre-schooler. Then again, he's also more likely to physically kick out if something is happening that he doesn't like, and he's pretty strong :) So there are perks.

Either way, I want him to be as prepared as possible. I hit as many of Rabbi Horowitz's bullet points as possible. Your body is private (we were doing this anyway to teach him not to be naked in front of other). Nobody can touch you where your underwear covers (along with a reminder of what those parts are called). Nobody can tell you to keep a secret from your parents- insist on calling home. (E. added, "And stop, right?" Right. You forget the need to spell out everything.) And you don't have to do anything that makes you feel yucky.

The last is the hardest, because with things like OT and swimming lessons, we push that envelope. But I think we're good, and he's got the concepts, which will help in many situations in his life.

Happy camping everyone!

Best conversation ever! E. and the Little One

2011-06-29T21:21:00.002-04:00

E. and the Little One in the wading pool today:

E. pours water on the Little One's head. She's not happy. I tell him, "She doesn't like that. Would you like that?" He says, "No," and stops. She, however, heard me, and got an idea, and poured water on his back.

E: "No! Don't do that!"
Ima: "Little One, don't pour water on E. He doesn't like it."
Little One: "It hurt him?"
Ima: "Yes." (Best way I could think to answer a two-year old.)
E.: "It hurt my feelings."

!!!!!
Beautiful job for both of them.

"It hurt my feelings." I'm still amazed.

The towels are out on the front railing.

2011-06-28T10:37:00.002-04:00

Summer is here.

T. went to camp and loved loved loved it. M. starts today. The Little One is Wednesday, and E. on Thursday. M. and E. are both going away, so aside from the packing, I want them to go away happy instead of "Oh, my house is crazy, I'm so glad I made it out."

So I'm doing M.'s favorite things now, and I actually took the kids to the mall yesterday (I HATE the mall), where we bought a bunch of clothes at Old Navy and then realized halfway across the mall that the Little One was sitting on a pair of short we didn't pay for. Thankfully, S. was with me, and off she went to return them, at top speed. If nothing else, I figured it was a nice lesson for the kids, but guess what? To them, it was as obvious as getting up in the morning and eating breakfast- it's what you do. Cool, huh?

I hope I can keep up the joy summer brings my kids. I hope I have energy for the long afternoons and evenings, with the wading pool in the backyard and the bikes down the street. I have two kids to teach how to ride two-wheelers this year, with a toddler in tow. But, no homework or tests to study for, or carpools to another city.

Here we go.

Beware of blue.

2011-06-27T07:38:00.005-04:00

A few months ago, I picked up a bottle of yellow food coloring at the store and turned it around, revealing that it contained Red Dye. Yesterday, we found that our favorite kosher blue decorating icing contains Red as well, as does the blue sanding sugar the company makes.

I know there are many people who are dye-free. In theory, I'd love for my family to be one of them. But it's a royal pain. I was at a wedding last week where I sat next to an acquaintance who's a personal chef/caterer, and was telling her of my Red Dye woes. She said she never used food dyes because she doesn't like to use artificial things. Then, she added, "Except for decorating cakes, or if I need jimmies for other deserts." Yes, except.

M. can't have Red Dye- he gets horrible stomach aches. E. probably shouldn't have it either. So I try, in general But I find it difficult, because of how much red Dye is in. Cereals (Cinnamon Life), chewable medicines, and of course, desert. Obviously, red, pink, orange, and purple. Now, sometimes yellow, which means sometimes green (though that doesn't always follow) and apparently sometimes blue, which had always been our safe color.

We recently made and decorated a cake for a birthday in our family. I now know that while I can't use blue, I can use yellow and green in our local brand. And I know the same with blue, green and yellow at our local kosher bakery, because i had them show me tubs of icing.

How do you go dye free and still decorate kid-friendly cakes? I'm willing to do natural dyes that I'm not allergic to, which excludes all berries and summer/tropical fruits, and that won't give the icing a weird taste.

BTW, I'm planning on posting more when my kids are all settled for the summer. Each starts camp on a different day this week.

Tired.

2011-06-23T07:01:00.003-04:00

For some reason, the last couple of weeks have been nutso. S.'s last week of school, aka finals, either she or I had something every single night. This week was busy too- I was up until midnight getting laundry folded on Monday night, again at a meeting Tuesday, and again last night for a fabulous and energetic wedding.

So now all my energy is sapped, and the kids have been home. Today I have to shop for Shabbos and then take all of them to a hospital center-based specialist that's an hour away, just for S. (or else she could baby-sit). There, we will wait in a large communal waiting room for anywhere between 1 and 3 hours, then move to a tiny exam room for about half an hour , then hopefully get seen for fifteen minutes in which I need to be un-distracted, then drive home for another hour. And no, I don't have a babysitter for them. And did I mention that the Little One has been regressing with her toilet-training?

OK, kvetch rant finished. I'll try to come back when I have something good to say. Oh! Finals went well, and S. studied a lot with friends and M. did well too, and they're very happy to be finished, and looking forward to the camps I'm packing them for.

That will have to do.

Swallowing pills, part infiniti.

2011-06-16T09:00:00.002-04:00

T. swallowed a pill two days ago. She did it again yesterday, though today she had trouble.

We ran out of liquid allergy medicine, but I take the pills of the same med. So I cut them up to adjust for dosage and put it into a spoonful of applesauce. And she just did it. Hurray!

It's when things like this happen that I can actually understand why people will tell me, with E., "Just put it in some applesauce or pudding- it should go right down." That's the normal world where things can happen As Usual. The sheer virtual impossibility of accomplishing the same simple feat with E. is something many people don't get. Though I'm sure I have the same problem understanding other people's issues that don't apply to me.

I am happy for T. I hope it will also be for E. in the future.

The need for speed.

2011-06-15T22:32:00.002-04:00

I like things to happen efficiently. For example, say you park the car in the driveway and want to go in the house. So you unbuckle, get out of your seat, get out of the car, and walk up to and into the house. Sound simple, right?

Not if you've met the Little One. Ima unbuckles you, so you have to first be annoyed that you didn't do that yourself. Then, you get out of your seat, but decide you didn't do it the way you wanted to, so you climb back in and get out again. Then you have to go across the grass in five different ways, just because, and then you run away from your Ima just because she is trying to get you. Finally, you get to the stairs, go up and down them twice, and see Ima's face, and finally go inside.

Time from parking the car until passing through the house doorway: almost ten minutes.

This drives me crazy. Crazy crazy. Then again, I know she's a toddler and will outgrow it. But even with older kids, or adults, I don't always do well with the roundabout route. I like to get things done, and move on to the next thing. I enjoy things, but if you can get it done faster or do two things at once, even better.

Of course, that's not even close to always the right way to go. With E., it's often impossible, but my other kids also show strain when I try to get them to move from thing to thing. And then there's a whole question of what the purpose of it all is.

When I was in high school, I became acquainted with a Ralph Waldo Emerson quote by way of Aerosmith: Life is a journey, not a destination. Then, as I grew, I started learning more and more about how life is about developing relationships, with others and with Hashem, and we need to make sure that anything we do, and the way we do it, supports and fosters this.

But it's hard. I want to get something done, and my child wants to enjoy things along the way (or to enjoy things so they never have to do what you want). And it's all great if that's all I had to do that day, but it's not. But if all that life is is getting things done so we can do the next thiongs, that's not a life.

S. was recently in a production titles "B'chol levovcha", "With all your heart". The idea is that we do too many things at once and sequentially these days, often on the surface. It's rare that we stop and put our whole selves into something, all our focus and energy,the way a child would. We are supposed to serve Hashem with our whole heart. We should listen to a child tell about their day with a whole heart.

But it's hard. And usually we multitask, which gets things done. But we lose the process of it all. And while I have no need to put my entire self into my laundry, I'd love to be more focused on helping M. study for a test, and not have to get up in the middle to take a load out of the machine and add another because otherwise it won't get into the dryer before I have to go to bed. And I'd rather have no problem trying different routes up a hill with the little one, helping her learn about the world.

But where is the time? I don't have it. So I budget certain amounts of time for things (journey from car to house- one minute tops), and when they go long, I'm up a creek and I get frustrated, even if the particular child really did need that time within their framework.

I have to be flexible.

Ignorence is bliss.

2011-06-10T16:22:00.003-04:00

Have you ever found out something you didn't want to know? Either something you had no idea about, or that you specifically did not want to know?

When I was a teenager, there was a many-years-long fight going on in my extended family. Brothers and sisters (all married) were barely speaking to each other, and certainly not regularly interacting as they did before. Family pictures at weddings were taken in two shifts.

I didn't want to know why. By not knowing, I couldn't take sides, and i didn't want to, even in my head. My parents tried to tell me once, and I asked them, "Is there any reason I need to know this?" The answer was no, and I remained happily oblivious until it was revealed to me three years later in, of all things, a speech at a bar mitzvah. I was pretty upset.

Recently, I was told something questionable about someone I know who died. The person who told me thought I knew, and also took a negative take on it, blaming the person for it when there isn't necessarily any blame involved. And I was angry- so angry. What business did she have telling me this? Didn't it constitute forbidden speech (lashon hara, which is true but negative)?

I was also frustrated. Once again, I had tried not to know. I heard an inkling that something might be up, but I consciously ignored it. Because it had no bearing on anyone at all, once this person died. If I was the family's social worker, I might need to know, but otherwise, no.

I hung up the phone with my acquaintance after the conversation and steamed. I was beyond upset. I had not said anything to her as we spoke, but I felt a need to let her know how I felt.

And then I thought. I recently relearned the Jewish laws of rebuking another person. You're required to rebuke someone for what they've done wrong, BUT only if you have no personal stake in it. Meaning, if you are angry at them, or don't like them, you can't do it. Because it won't be pure.

So I spent fifteen minutes talking myself down. Getting into her head and giving her the benefit of the doubt. A reason for telling her what I want to tell her that doesn't come down to "I'm mad at you and/or need to show you that I'm right." Something about what she did that didn't make me mad.

I came up with one strategy. So I took a deep breath, called her back, and apologized if I had an elevated tone in the last convo. Then I calmly informed her that I hadn't known the information she gave me before she told me.

"Oh! I'm sorry," she answered. "I thought it was common knowledge."

I replied that I didn't know, partly because I didn't want to, and that others also don't know. That perhaps she could keep this in mind in terms of mentioning it in the future.

And I was done. I wanted to say, "And if I did know? I still don't place blame for it!" But there was too much anger in me. So I stopped, and I said "Thank you and good bye."

I'm proud of myself. But I'm still sitting with the information, and with my anger. I have more work to do.

We're getting there...- Update

2011-06-07T09:39:00.004-04:00

Soup is simmering. Three kinds of fish made, one to go. Chicken and roast in the oven, veal loaf in pastry done, turkey roast and stuffed cabbage still to go. Two side dishes up, a whole bunch left. Two cheese cakes and two blintz casseroles finished, each one with one dairy and one not.

I feel less stressed than I probably should about this two day holiday coming tonight. I feel like we're OK. What I'm actually worried about is the weather. High nineties, and bad air quality.

On this lovely holiday on Shavuos, we have a tradition to stay up all night learning. The husband, M. and S. will all be doing this. Then they will come home and sleep. that means we need a quiet house from 7 or 8 AM until about 12:30. Usually this is accomplished by taking the kids outside. But there is no water play on the holiday, and both Ima and T. are asthmatic. And the basement AC isn't working.

We will make it work. E. and the Little One will be quiet enough, somehow. If I daven (pray) hard enough.

Update- Food is all done. Kitchen is a million degrees, after having two burners and the oven running for two hours straight, and the window cracked open so I could hear the kids in the back yard. I'm zonked, and the holiday's not even here yet.

But there is nothing like working for days or weeks to make sure a holiday is a wonderful, comfortable and tasty one, and having your picky eater son walk into the kitchen and say, "It smells so good in here." Even better when he tastes something and says it's amazing, and then eats it all up.

May we all feel completeness in our families. Chag sameach.

Why I can't wear my new cardigan.

2011-06-02T21:52:00.004-04:00

I got to go shopping with my husband on Memorial day. Kohl's was having a sale, and I needed stuff for the kids for camp. While we were there, I found this great, light 3/4 sleeve black flyaway cardigan (the open kind). I've been needing something like that. It gathers in the back to give you shape, but has a lot of give, and it's perfect for spring mornings and dressing up casual outfits. And of course, on sale. So after trying it on, I bought it.

Two days later, I was getting ready for T.'s school play, and I put it on, and was still happy with how it looked. I went to go dress the younger girls, and along the way began to notice I was feeling a little off. Soon enough, I was getting nauseous and headachy, and I had a pain in my neck, literaly. And suddenly, I thought I knew why.

I took off the cardigan. And there it was: a line of stitching right up the slightly raised, gathered collar that's common on these things. The fabric was gathered enough that it formed sort of a knot that went up a good inch and a half. And that knot fell right at the base of my neck, above the bone.

That's a bad spot for me. I learned getting a back massage in high school that if you press there, I feel sick. Why? I'm sure someone knows. So my cardigan makes me sick, and I can't wear it. Maybe I'll see if S. can.

The message for me? Twofold.

a) This is what being sensory is like. Things that should be nothing can make a kid (or adult) completely non-functional. "Why did you have to leave class and go to the nurse?" "The tag on my shirt."

b) Reflexology? Phrenonlogy (the skull pressing thing)? Not crazy. Apparently everything in our bodies are crazy-interconnected. Which is a pretty cool thing Hashem did, there. Although awfully confusing sometimes.

Biofeedback. And normal.

2011-06-02T14:50:00.002-04:00

I've been looking into biofeedback lately, as a non-medication way to treat ADHD type symptoms, including activity level, impulsivity, and emotional volatility. Anybody have knowledge or experience to share?

For E., I love the idea of computer-body interactions in order to teach him how his body reacts. I don't know how well it would work, but with his love of computers, it certainly seems worth a try. And we've had success with yoga in the past, so I love the idea of teaching him to know his body and control its muscles, etc.

You know how sometimes, you wish your kid was normal? I find myself wishing he was normal for a special needs kid with his issues. You know, the ones who take their ADHD meds and they work as they're supposed to and maybe there are side effects but not enough to pull them off. (Though I am grateful for the effects we're getting from the meds he's on.)

But we've never been a normal family, right back to when both the husband and I were growing up. Why start now?

My new meal.

2011-06-01T17:44:00.003-04:00

Apparently, you can make pancakes with 3:1 Ezekiel flour (which I can buy pre-made) and white whole wheat, and the kids will eat it.

I like to do a pancake dinner every so often, either for an occasion or because I think we can all just use that kind of a meal as a break. Awhile ago, I started sauteing finely diced apples to use as a topping either instead of syrup or to reduce it. Recently, I had almost none of my regular flour, so I used the above mix. I added some vanilla and cinnamon, and substituted a cup of orange juice for one of the cups of milk (soy milk in this house), and nobody guessed it was different!

I feel less guilty about this meal now. I've never been the healthiest cook ever, but I'm trying to get better at it. It's especially important because a) S. is growing into a teenager and needs to get her eating habits right now, and b) E.'s medicine makes him eat everything in sight, and he now officially qualifies as "husky". So it's better if most of what's in sight is good for both of them.

Multitasking I could handle.

2011-05-26T15:54:00.003-04:00

Although, wouldn't you feel tired in the morning?

I need more exercise, in general. I'd love to go walking in the morning at 7 or 8 AM, or in the evening at 8 PM, when it's cooler (although last night it was still in the eighties at 8 PM). But that's not happening. Maybe later, with S. when she's home, when everyone's in bed. Summer means later bedtimes, because its not cool enough to play outside until later and we need to do baths every night.

I'm tired just thinking ahead. But summer is clearly here, and it brings with it the leaving behind of the stress of things that must be done.

Multi-tasking moms.

2011-05-26T11:12:00.005-04:00

Mother in Israel just put up a post on gender identity. She starts with this-

"Boys are good at math. Girls are good at multi-tasking. Men talk less, and women are more empathetic. But are these differences a function of biology, or social conditioning? Do they even exist?"

Whether it's nature or nurture, a boy who doesn't do so well at boy skills can find things difficult- sports, for example, are more important than I'd like them to be. A girl with no fashion sense? Not simple.

I'm not a great multi-tasker, and for a mom, that's hard.

All through growing up, people would tell me I was almost stereotypical male when it came to my academics. I'm big into the theoretical, often nit-picky analysis used in learning talmud. I was always into the facts and technicalities. I like to argue my point until the other person either gives or gives up. I'm good at math. Not that girls don't do these things, but I actually had a teacher tell me once that I learned and class-participated more like the guys in her classes did.

(Side note: Females with Aspergers often present very male, due to their ignorance of or not caring about prevalent fashions, and their sheer focus on specific topics, which often include typically male areas like math and science, which are more quantifiable than the softer, more subjective subjects.)

The biggest thing. neither male nor female, has always been that I think very deeply about things, and like to get through them before I stop. If I'm working ion something, whether a painting or an essay or studying for an exam, the first hour or two are just prelude, where I work at half speed to get myself in. The real quality work gets done after that.

Not conducive to every-day motherhood. Not that a mother can't work that way ever, but when you're trying to run a household with multiple children and you're the primary caretaker, you must multi-task. You can't do one thing at a time- you could get called away any second to do something else.

There's a story of a man who finds himself home on Friday afternoon, and offers to help his wife get ready for Shabbos. She is ecstatic, and says, "Please sweep the dining room! Thank you." He does so happily, but after he's finished one quarter of the room, happily seeing the newly cleaned part of the floor, the baby starts crying. "Go get the baby please! Change her if you need to." He sighs and does. Then she says, "Take out this bag of garbage." OK- halfway to the door. Then, "Never mind- the kids are walking through your sweeping pile. Go back to sweeping." And so on. He keeps going back and forth, never finishing anything, and gets so frustrated he quits.

That's me, too often. I've learned a lot over the years, but I can't tell you what I would do to do all the things I do one at a time. But I have to stop to take the Little One to the bathroom, and to close the front door E. left open, and to deal with the obviously frustrated M. who just walked in and can't wait for five minutes until I finish supper.

I currently have two kids who require me to switch gears quickly. One of them may stay that way for a very long time. Maybe both- who knows? The Little One is a bit of a firecracker. I need to not just tolerate switching gears, but revel in it. Because as long as I just tolerate it, it's too easy to fall over. And I can't just walk away when I get frustrated.

An ice cream treat.

2011-05-25T13:36:00.002-04:00

The other day, I was eating a cup of ice cream, and M. came into the kitchen. He asked me, "Why are you eating ice cream?"

We have rules about things like ice cream in our house. You get it on special days, which might be a holiday or Rosh Chodesh or the day that someone has a performance. Occasionally, I'll give it out as a treat, for good behavior or because it's the first warm spring day that it's not raining. But I'll always give a reason.

So M. wanted to know why I was eating it. Thing is, sometimes when the kids aren't home, I'll just take. And I was trying to figure out what to tell him. Using ice cream as a pick me up isn't a message I want to transmit.

I went with the actual reason I had some that day. "I'm giving myself a little treat, after a very full day." And I like that message. It means that when you're an adult, you get to decide when it's the right time, but it should still be a decision. You shouldn't just take luxuries whenever. especially when too much isn't good for you. At some point, the kids are going to have to learn to make these decisions on their own.

May they make them well.

Is it too much to ask to want your kid's school to know more than you do?

2011-05-24T13:33:00.003-04:00

E. goes to a good school. They love him, and care about and take care of his needs. They tolerate behavior that many other schools would not, because they are invested in him. And they know a lot about his issues and how to deal with them.

But often, I know more.

OK, so that's normal. I'm the mom, right? And I've been doing this awhile, complete with the research and having more time with my kid than they do, in more situations. But today I asked about what strategies were available for slowing him down (the ADHD component), being that meds are of limited help.

They told me about basic behavioral strategies and about body positioning for attention, and the OT stuff we use. But I knew all this. I wanted more. At home, I use deep breathing to get him to take his meds, and tapping the table has helped him slow his reading down both in school and at home. So I asked, "Have we used anything like this with his in a broader way to deal with the ADHD? What's out there?" I asked, "Is there a unified theory or program you're using to treat the ADHD behaviorally?"

Crickets.

Based on the questions I asked, they asked me to send them information on what I've seen. They are really willing to learn, and have implemented things I've suggested and asked for before. So I'm putting together a bunch of links for the use of various relaxation and rhythm techniques and I'll send them over and we'll see.

So it's not dire or anything. They do know a lot, and so do I, and neither of us knows everything. But I'd like to ask an expert a question and get a new answer, a useful answer. I don't want to have to be the expert.

The house full of farm animals.

2011-05-23T08:19:00.003-04:00

Last week, through some necessary earlier carpool switches, I ended up driving E.'s carpool to school four times in a row. On top of that, I had two days in a row with two carpools in a row in the morning, putting S. in charge of getting everyone ready after 7:15 in the morning. Which means they all had to be mostly ready by then. Usually I only do that once a month. And on top of all that, it rained, every day, and my shortcut to E.'s school is closed for construction.

I made it, clearly. Did I have a choice? And it went a bit better than I thought it did. And then, this morning, I woke up to my earliest morning every week, with my early carpool drive, the one that usually frustrated me, and I was so bright. I only had to drive once! And it's not raining!

It reminds me of the classic story of the man who went to his Rebbe with a complaint about how small his shack of a house was for him, his wife and many children. The Rebbe said, "Take your cow into your house." The man was confused, but he did it. The next day, he went back and said, "It is now even smaller!" So the Rebbe said, "Bring in the chickens." The next day, it was the donkey, and then the cat.

Finally, when there was no more room to walk without bumping an animal, the Rebbe said, "Now take all the animals out." The next day, the man came to his Rebbe and said, "There is so much room in my house!"

My medicine cabinet.

2011-05-19T12:43:00.004-04:00

Did a thorough clean-out of my kitchen medicine cabinet. [Kitchen, because a) that's where I give most of the meds, and b) it's easier to lock with a regular cabinet lock. The butterfly ones are the only ones that I find to actually be childproof.]

Here is what I found, from the last year and a half, just for E.:

Clonidine
Abilify
Risperadol (liquid and pills)
Focalin
Vyvanse
Intuniv
Strattera
Methilyn
Lexapro

The evidence of the Great Medication Switch.

Poor boy. I really hate messing with his brain and his body like this. At least two of those were at one point being used just for sleep, to combat the side effects of the stimulants, whose effectiveness would wear off by five or six but kept him up until eleven.

I hate medication.

And yet, we can't really do without it.

Lesson learned- the hard way.

2011-05-17T21:12:00.003-04:00

So E. has had some behavior issues of late; he's been more volatile, basically. We didn't know why. It was spring, after all; bad behavior belongs in the winter in E.'s universe.

We ended up doing what they always tell you not to do- changing a lot of things at once. You don't know which it was that helped, and if you want to find out, you have to add things back in, or subtract. But we had to get him out of his rut fast. And now, I'm not taking away the new meds that might be helping, we're not backtracking on the new behavior plan, and I'm not adding back his B12. At least, not for a long time.

I was so happy when I got him to start taking that B12. Everybody said the B vitamins were key for neurological development, and I wasn't going to do the shots. This was perfect. Except that I never read the fine print.

Apparently, some vitamins are fat-soluble. They enter your system and don't bleed out for awhile; you don't always have to put in more. So if you take the same decent-sized dose every day, eventually you will build up quite a level. I didn't know that.

When E. started having these behavior issues, it was so quick that the school recommended a medical work-up. He passed his physical, and then we did blood work, where we checked all the normal things, plus his sugar levels (a risk factor on one of his meds), plus a celiac screen, plus thyroid, etc. We were checking his D levels anyway, because we always like to know that (he has a history of major deficiency), so my doctor decided to check his B12 levels as an after-thought.

And they came back quite high. Everything else was normal.

I went to our trusty internet and ran a search on B12 overdosing. Side effect: anxiety.

Anxiety.

That would do it. Though of course, we don't know for sure.

I will not be using any supplement again without regular blood levels, unless a doctor specifically tells me I don't need them. I will know to check if things are water or fat-soluble. I will ask what their half-lives are, even if they are vitamins or minerals, and I will know the side effects of having too much.

I feel stupid. And yet, clearly Hashem doesn't expect perfection from me. Maybe I got this now so I'm ready and able to prevent something worse and stupider in the future.

Randomness: Sesame Street nightmares, and sticks.

2011-05-17T09:23:00.008-04:00

This AM, as usual, I asked T. how she slept and if she had any dreams. (For the Little One, I ask if there were any stories while she was sleeping.) T. nodded her head slowly and said, "Yes- it was so scary."

What was so scary? A serious look slowly morphed into a weird smile. "Cookie monster was eating Oscar."

Huh. I guess when you're six... And that image is now stuck in my brain.

In other news, also this AM, T. liberated one of those skinny cardboard tubes that sometimes make up the hanging part of dry-cleaner hangers. She bent the wire hanger and pulled it off, and then the Little One got hold of it and started waving it around. Both T. and I got a little nervous, because the Little One has taken to occasionally hitting people with things like that, but then I stopped and asked the Little One what her stick was.

"It's a flashlight!" And she kept waving, and then asked me to turn it on.

It reminded me of this fabulous children's book, Not a Stick, and it's companion, Not a Box. Basically, the adult keeps asking, "What's with that stick you have?" and the kid says, "It's not a stick," and then you see what it is in his head. I highly recommend both books.

When your kid takes an early development test, the evaluators want to know if they use objects appropriately (talking into a phone, for example, as opposed to using it as a hammer). But new intelligence tests for teenagers and adults, and even some universities, are using "divergent thinking" tasks that will ask, "Name as many possible uses for a brick as you can in one minute." If all you can up with is building, you won't score very well.

And the world goes round and round and round.

Have a good day!

If only E. had a real label...

2011-05-16T12:42:00.005-04:00

(Firstly, hello! Finally, Blogger and I are on the same schedule.)

Yesterday I talked to M. about his summer, which is going to involve a lot of E. The two of them are going to the same camps at the same times, though in different divisions, and M. said, "I'm going to have a lot of E. this summer."

This is a really big deal, because M. went to sleep-away last year largely to get away from E. For that time in the summer, he doesn't want to be responsible for him, to get negatively affected by him, or for people to see when E. acts weird and know he's M.'s brother.

Now, M. won't have any responsibility for E.- he has his own counselor, in a separate area of camp. And obvioiusly, E. won't be in M.'s stuff, though I do worry that E. might run across a field toward him or shout his name. I was especially worried that he'd be nervous that his friends would know his brother's in the special needs division of the camp.

So I said to him, "Remember that you don't have to be ashamed of having a brother in the special needs division." But it turns out, that doesn't bother him. So I followed up. "Also, any behaviors your friends see from him can be explained away by the fact that he's in the special needs division." And he said, "Oh! You're right!"

So here's how it apparently shakes out. My kid is enlightened enough, as is his community in general, to not be ashamed of special needs. So as long as everyone knows that that's the reason E.'s misbehaving or being weird, it's OK. Or as M. said, "Maybe he could wear his T-shirt from that division when he goes out during the year. So people would know why he does things, and not think it's because of me."

Because of me.

We have no idea what's in kids' heads, do we?

M. would be perfectly happy for E. to go out with a sticker on his forehead that says, "Autistic" so that people will understand and not blame him. Why they would blame him, I don't know, but it's been too long since I've been a kid. Plus, M. is in charge of E. at some points, so maybe he thinks he's not doing a good enough job?

But either way, it sounds awefully close to what I feel a lot with E. If only people knew. Then they'd stop looking at me like a bad mother...

Toilet training- a change in routine.

2011-05-05T09:07:00.003-04:00

So we're toilet training the Little One. We've been working on it for awhile, sort of, but she's been pretty good lately and last week she asked for underwear. So off we went.

The Little One is the only child I've ever done this with without a younger child at the same time, so in a way it's almost luxurious. Yes, we have E., who could be anywhere doing anything, but I don't have to bring another child into the bathroom with me and the Little One, which is cool.

Thing is, it's not one of those, "She's so ready that it just happens" experiences. She needs help, and to be taken frequently, and I need to be pretty near her at almost all times. So I'm on call a lot. Which I'm finding to be a little stressful.

Also, with E.'s morning carpool, she's in the car for half an hour each way. So we have to get out of the car after we drop off the kids and go into the school to use their bathroom, every time we drive. Three days a week. The Little One is getting used to the pace of training, but now she also has to get used to not getting to go home to decompress from carpool before going to playgroup.

Each day I get into this, it gets bot easier and harder. Easier because I'm getting into the routine of it all, but harder because each day is one more day I've been doing it so the stress goes up and up. I'm thinking (hoping) it will settle sometimes middle of next week. Maybe?

I can imagine a little better what it's like to be tied to a routine, and then have it all change on you. Even if it's exciting, the stress level of the new or the over-vigilance affects everything else you do. I have to be extra-careful with myself not to flip out at kids because of all the heightened awareness, which is one more thing to watch out for.

So I'm a little more inside E.'s head, and maybe even M. (S. gets jazzed by changes, and T. sort of rolls with things, though that could change.) I need to practice my self-talk, the same way I do with E.. And I need to teach myself how to deal with impossible situations, just like I ask of my kids. If I know I'll be fine with just a ten minute break, but I also know I'm not getting that break, I need to adapt somehow.

Maybe I have to think harder about what I demand of my kids, and when.

A tale of two tantrums.

2011-05-02T12:17:00.002-04:00

In the dining room, the husband is working on E.'s math with him. Math is something E. is instinctively good at, but the structure of things can kill him. In this case, he had to do his work on a separate, lined paper, and insisted on setting the whole thing up before he started any of the problems. Then he made a mistake on the set-up of question eight.

Suddenly, everything was wrong. He couldn't cross it out and move on, or even erase. He needed perfection. The whole paper was ruined, and he put a big x across the whole thing. The husband was calm, and turned the paper over to have him do it again, but problem by problem. E. tantrummed some more, but eventually did what he needed to do.

Just behind the wall, five feet away in the kitchen, the Little One wanted a drink. I gave her the lemonade she asked for, but apparently not in the right cup. In all her 2-year-old glory, she insisted that wasn't good enough. She wanted her green cup with the handles, with the lid. Unfortunately, we don't have that lid anymore.

She insisted. Loudly. "No, not that cup! GREEN cup!" "No, need the top!" This is a child who recently insisted for almost a full day that we call her "Ketchup" rather than her real name. When I asked her, "Am I mustard?", Mustard I became. She named T. "Hot dog" and her visiting friend "Hamburger". When the friend left, she even asked, "Where is Hamburger?" So when she decides, she decides.

So eventually, I talked the Little One down from the green cup, and she accepted the pink one with the purple lid when we called it "pretty." But it took some time.

Neither child threw themselves on the floor, thankfully. Both screamed. Both insisted. And both needed to have their way. And they are six years apart.

If the husband hadn't have been home that evening, I might have exploded. How people have twins, I have no idea. E. has come a long way, but sometimes I feel like I'm raising two toddlers. I know that they both need the stubborn streaks to move on and develop. But sometimes... Sometimes it's hard.

I feel like a munchkin.

2011-05-02T09:19:00.003-04:00

Ding dong, the witch is dead.

I have no words for this feeling, this knowledge that Bin Laden has been killed. I see the videos of celebration, and they jive with the elevated, airy feeling I got when I heard. It makes me think of how my grandmother must have felt when Hitler killed himself, and when Eichmann was killed. And there is a new understanding of the Pruim story, including the celebration in Persia when Haman was brought down.

There is evil in this world. Obviosuly, we don't know what will happen next, and nobody thinks everything will be easy now. But to know that this force is gone, that this person will not be orchestrating anyone else's deaths....

I am grateful.

Hachnasas Orchim- it means inviting guests.

2011-04-15T17:18:00.003-04:00

Been having a challenging time with E. lately. You know how sometimes when things are hard, you don't want to think about them at all when you're not actually dealing? That's been me, hence the blogging lapse. Suffice it to say that the last two weeks have been difficult, centering on the question, "Why is this happening, and what on earth do we do about it?"

At the height of the confusion, I got a call last Friday just before noon, asking me if we could put up a woman for Shabbos for a simcha (a happy occasion) she was attending. She lives in town, but far away from where she needed to be. She would only be sleeping by us, not eating.

Now, I know this woman from around. She's lovely, but I wondered if she would be needy based on what I knew. With so little notice, I felt put out, and had it in my head to say no.

But then I got this feeling. It's the same feeling I get when someone knocks on my door to collect tzeddakah (charity) just when I'm feeling despondent. "I must need this. Hashem is sending this to me, and I'll have the merit, and maybe it will help with my problem." This time, it felt even bigger. My household would all participate in this, together. I needed to do this mitzvah. Not just so Hashem would do something for me; apparently, to move on through my world, I needed to change myself by giving in this way, and to build myself as a giver.

So I ran to ready the guest room, which is usually S.'s job, and prepared in my mind for a lovely woman who might be a little trying. And that's exactly what we got. She came, she was polite, and she asked for food at the busiest time before Shabbos. I had prepared myself, so i got it for her,a nd got my kids in on the act too. It's easy to host friends for meals and Shabbos, but to host those who need it when it's challenging... I don't often do that. (Granted, family sometimes falls under this category, but this was different.)

By the end of Shabbos, she had spent little time at my house. We had given her a good breakfast, some snacks, a nice room and some conversation. The conversation seemed to be the most important part.

And my difficult world, while still difficult, feels a little less difficult now. Brighter, maybe. Not that it's less of a load, but clearer, and lifted. I gave.

So I had a mini exodus from a personal Mitzrayim (Egypt). Not a bad way to get ready for Pesach (Passover). Cleaning out your soul.

"My mom was a screamer."

2011-04-04T12:43:00.003-04:00

My mother in law was telling me a story about her growing up the other day. In the course of telling me about an interaction with her mother,she said, offhand, "My mom was a screamer," and then she moved on.

I don't want my kids saying that about me, or thinking about me, But it's possible that they do, because when I get overwhelmed, that's often what I do. I'm not proud of it, and I'm working on it. I once heard Ruchama Shain say that if you want to ask Hashem for anything- peace at home, relief from illness, spiritual understanding, anything- you should watch your speech, and try not to get angry. Speech, I'd been working on, but anger... it's hard.

The only consolation I have is that I'm in good company. I was at a shiur (Torah talk) recently by Rebbetzin Holly Pavlov, and she was talking about aspiring to be Godly, and realizing that you can have those traits. "God is merciful? I can be merciful. God is caring? I can be caring. God is slow to anger? I can be slow to anger. Someday."

So it's not just me.

I feel like when I'm relaxed, I'm good. But really, more often than not, I'm over-busy and or stressed, or over-tired. Thing is, apparently that's not a good enough excuse. Because Being slow to anger is good for everyone: my kids, my husband, the telemarketers and insurance agents on the phone, and me.

My biggest tool to stay in control? Remembering a passage in Sarah Shapiro's Growing with my Children. Her kids once accidentally turned on and off their tape recorder on an average afternoon. She heard herself yelling at them, and could not believe how horrible she sounded. Later, she heard herself speaking calmly and nicely, and she almost didn't recognize the calm, wonderful mother there.

I want to be mother number two. Not the screamer.

What E. might do if we had a pet.

2011-03-31T20:45:00.003-04:00

Battling impatience, and self-control.

2011-03-31T09:35:00.002-04:00

Lately I find myself impatient. I don't know why. I'm not sleeping a lot less than usual, and I'm not cleaning for Pesach yet (we're going away). Yeah, I have a bunch of stuff ahead of me, but still...

I'm hoping that it doesn't show all that much; I feel myself regularly tamping myself down. I figure if I can get myself past whatever mood I'm in, for whatever reason, I'm good to go. But there's extra stress in constantly being on guard. I know that T. has a perfect right to ask me to get her breakfast, but this morning I resented it because I was busy at the time. So I pulled myself in, smiled my best, and got her the food.

I wonder. E., children like him, and many people with very high functioning Aspergers or ADHD, are constantly doing this. Their nature is to react impatiently or impulsively, or to not look for social cues or care about small talk, etc. But they know what they're supposed to be doing, and they may even know why and agree that it makes sense. So they work and work and control themselves all day, every day.

Is it any wonder they get irritable? Or that some days, they don't have the energy, so they don't try. And as a parent, I think, "What's up with him today?" E. happens to have had a couple of bad days in a row, and we can't figure out why. But maybe he's just in a bad mood. Maybe he's tired of it all, worn out, just because. Special needs kids are allowed to have bad days too, without it being pathology. It just shows up like it is.

What do you think? When lateness affects others.

2011-03-25T07:35:00.003-04:00

In my town, it's all about carpool. That's how most kids get to school. So if your child is running late, they can make an entire carpool late as the driver just sits outside your house. And if you don't leave on time because one of your kids is lagging, you can not only make the children in the carpool late, but sometimes the mother then leaves late for work.

Now, I have an issue with time- I like to be on time. I like other people to be on time, especially when it affects me. This gets ramped up double when it involves E., who is very sensitive to being late, and M. doesn't love it either. So I often don't give people the benefit of the doubt when I should.

So the question is this. Obviously, if a child is missing a shoe, he can't walk out the door. But if he hasn't finished breakfast, or she hasn't gotten her coffee, are these reasons to delay a carpool?

I've had mothers tell me that their child's day just isn't the same if they don't eat a full breakfast. Or that she'll get a headache or fall asleep without coffee (that's a whole other subject- these are middle schooler!) So yes, if yiour child walks to school or you take just them, you can make that decision. But what if your kid will be off his game because he got to breakfast late or the coffee machine just got started, and you figure, "The extra five minutes is worth it"? What if they really will have a worse day without what they'll miss by being on time?

And what if those extra five minutes means hitting ten minutes of traffic, and the whole carpool will be late?

I asked a friend about this, and she said that kids today are being raised to be happy and comfortable over being responsible. I agree in many ways, though I don't know if that's what's up here. As a parent, you don't want your child to be unhappy when a little thing could solve it- a missing favorite sweater, or an extra-long hug. You don't necessarily see the consequences for other kids. And if there are none for you or your child, it's even harder.

What do you think?

My linen closet is empty. E.'s bed is full.

2011-03-22T11:48:00.003-04:00

It so happens that it's just outside E.'s bedroom door. Of all things that I would think he would want, sheets and pillowcases are not what I would think he would care about. And yet, E. apparently takes after me.

When I sleep, I need weight on top of me. Even if it's 80 degrees in the room, I need more than just a sheet. In the spring, I use two quilts and the fuzzy sheep blanket I've had since my bas mitzvah. In the winter, I add a heavy fleece. And they have to be in the right order- if the heaviest blanket isn't on top, you lose most of the weight-benefit.

E. does everything in prime style. So after collecting a couple of sleeping bags to add to the blan ket he chose, which admittedly is not that warm but is green (which was the deciding factor), he moved on to spare blankets from my room. Since I need them, and the other kids won't let him have theirs, he moved on.

He started with one extra sheet, then three, and currently has all the sheets and pillow cases not currently in use on his bed. They're piled up in wads, and he climbs in and burrows into it all. Which sounds awesome.

It's amazing what we find out about ourselves through our children. I always thought, "Wanting all those blankets is weird." Now, I can say, "I'm sensory. I am the seeking type, who wants extra pressure." I always knew that I was the opposite of claustrophobic, seeking out closed-in spaces whenever I can. Now I have a name for it.

I have another friend with an autistic son who understands herself better now, too. Whenever she goes to a crowded place like a restaurant, she finds it hard to follow the conversation at her table. She never knew why, but now she knows all about sensory over-stimulation and auditory processing deficits. And she can relate to her son a little more.

So I'm a lot like my kid, which shouldn't be surprising. And I don't come down too hard on him for sleeping in a bed-full of cloth. Because I completely know why it makes him happy. And it always feels good when my kids actually make sense. Even if we don't make sense to anyone else.

Bake when you're fasting.

2011-03-17T17:49:00.003-04:00

Seriously, if you can handle it. You can't lick the bowl. Or eat spoonful's of dough several time, just to make sure it still tastes right. And if you're making caramel and chocolate chip hamentaschen, you can't scrape out and eat what's stuck to the sides of the caramel container, or eat handfuls of chocolate chips. So you get- more hamentaschen. Less snacking. Good times...

I have finished all my batches today. That makes ten in all, because my kid's school canceled on me so I didn't go in to bake with them. So two at home baking parties, one girls and one boys, plus a quadruple batch just for the family (we put them in our mishloach manos, of which we have SIXTY this year, plus we do like to eat them), and I'm officially done.

Now all I have to do is procure a flashlight for T.'s statue of liberty costume, find S. a beret for her artist costume, and put together sixty family mishloach manos and fifty small kid bags, and I'm good. We're a bit behind this year, but we'll get it done.

In other related news, this year, E. is planning on wearing his costume on Purim. He was enthusiastic when we got it, but them began to succumb to his usual costume anxiety.

We talked him through it, and he concluded that "half the time I will be Mario (as in Super Mario Brothers) and half the time I will be me." That sounded like a good deal. In school, his behaviorist actually wrote a contract with him that he would wear his costume all day at school on Monday, which is Costume Day there. If he does so, he will get a giant reward. And she gave him some help with being self-conscious- "People will comment on my costume. I will say thank you."

See you on the other side.

The world was full of chaos.

2011-03-15T06:56:00.002-04:00

Everything was mixed together.

And then, on the first day, Hashem separated light from dark.
And on the second day, he fixed the waters in their places- above, to the firmament, and below, to the seas. And there was dry land.

I don't know why Hashem chooses to revert certain parts of the world to chaos sometimes. I don't. I do know, watching the videos out of Japan, that now I have an idea what chaos is. Seeing that giant wave, the massing, unstoppable river, blaze through towns and take houses with it, floating along...

It is a daily miracle that every day, the massive monster that is the sea, the world's oceans, stays put in its own zone. The sea is a moving thing, not a static one. As much as a sea can, it seems to want to advance, to take more. And oh, did it take more this week.

My heart and prayers go out to the people in Japan. And now I know to be thankful every day for when things stay where they belong. Because, like E., don't we all want a predictable world?

Being inspired by the disabled, vs being disabled.

2011-03-09T12:46:00.003-05:00

Do y'all know who Rabbi Michael and Chava Willig Levy are?

Rabbi Levy is blind from birth, and Mrs. Levy had polio as a child and is now confined to a wheelchair due to overall physical disability. When I was in college, I had the opportunity to help them out on Sundays for a year, for which they insisted on paying me regardless of my protests. At the time, they had two young children, aged pre-school and lower elementary, and I was amazed at how they ran their household.

Each of them had their role in the household, and Mrs. Levy ran her family from her motorized wheelchair, taking advantage of what she had. For example, when we would walk to the store or the bus-stop, a ride perched on the back of the chair was a treat she used as a reward. There were some things that were difficult to do, because Mrs. Levy has limited use of her arms, so they had help during the week, and presumably from someone in the neighborhood on Shabbos, and on Sundays from rotating girls in Stern College, like me.

I remember helping make healthy pancakes, with whole wheat flour and wheat germ- I had never made pancakes from scratch before. And I once helped Mrs. Levy put on her sheitel (wig), getting it set right with the combs. I had never touched a sheitel before- my mother doesn't wear one. I got it all wrong. there were a lot of firsts for me at the Levy house.

I've always said that I spent little time around special needs kids when I was younger. I didn't do the volunteer work S. does, or help out like the girls who come to my house. I once taught a young man with Down's how to read kosher signs, but I needed a lot of guidance. I just felt uncomfortable, overall, with people with disabilities.

But I actually had forgotten about this opportunity. How many people get to spend time with disabled adults, and see how they run their families and have fulfilling, productive, inspiring lives? While every type of disability is different, the message is there. Almost nobody thought the Levys could make it work, but they did that and more. If they can, so can my kid.

Apparently the Levy kids are grown now, because I recently read in the new Jewish magazine Ami that their daughter got married. As usual, the article writer was inspired by the Levy's. But then he included this absolute gem, written by Rabbi Levy himself:

"An important thing for you to remember: the inspirers do not live to inspire. We live to perform mitzvos (God's commandments), following halachos (regulations and guidelines) which have nothing to do with inspiration, but everything to do with our capabilities and limitations...

The uninspiring questions are the ones that occupy us: we seek and strive to share in life cycle and celebrations... play groups... community life...youth groups... employment... access to all Jewish texts.

Inspiration sells, but honestly, it does not break barriers... Personally, I would be inspired by uninspiring articles about the very real systemic planning that is needed to break down the barriers... When a school expands, it should do so with accessibility in mind. When a Jewish magazine begins its life, it should consider how to make its copies available to those who cannot read print."

Nothing left to say.

The Little One does a grown up thing.

2011-03-07T08:33:00.003-05:00

Or, I guess, something children are supposed to do. But I was so excited!

T. and I were reading kids parsha (weekly Torah portion) books on Friday night. I love Tell Me the Story of the Parsha; it's a little wordy, but the full-page illustrations are fabulous, and kids keep flipping through them.

The Little One was jealous of the attention T. was getting, so she grabbed a different volume in the set and opened it, insisting I read to her. Then she flipped a couple of pages, pointed at the young man in the picture, and asked, "Why is he sad?"

I nearly fell off my chair.

The man in the picture is not crying, a clear sign of sadness that The Little One and I have discussed. ("He's clying! He's clying!") But he did had a pained look of anguish on his face, although you might be able to argue for intense concentration. But if you read the story, you find that he's done something very wrong by accident, and is very, very sad and upset about it.

So, my two-year-old has managed to identify an emotion based on a fleeting look at the face of a cartoon character she's never seen before.

I remember when I didn't know what a miracle this skill is. I am so thankful she's got it.

Drama!

2011-03-04T12:18:00.003-05:00

E.'s class recently put on a play. Yes, a play. His school brought in outside people who do children's plays- I don't know if they specialize in special needs.

Anyhow, they've been working on this play since the beginning of the school year. They did some general exercises first, and then got and learned their roles. Two boys refused to be in the play, and became the stage managers. For one of them, it was default. For the other, it was a perfect fit. (He did get upset when E. tried to help him by moving a chair. After all, would it be OK if someone took E.'s lines? This was his job.)

The night before the play, at bedtime, he asked me, "Ima, what if it is bad?" I was so beyond proud of him, to express his thoughts verbally and clearly instead of just saying "I don;t like it anymore" or "I'm not going." And really, isn't that what we feel when we're nervous? What if it's bad? I reassured him that everyone gets nervous, asked him if he knew his part, told him his teacher would help him if he forgot, and he was fine.

E. was a narrator. He has a lot of lines, but since the whole play rhymed, he was able to learn them with rhythm. AND, each time he spoke he stood still, straight up, feet together without moving. And he spoke loud. And relatively slowly. Well, you and I would consider it regular or a bit quick, but for him it was very slow. So once again, I am a great believer in drama therapy.

The best part was watching him in between his parts, moving around. Before the play started, he was so excited that he was literally bounce-walking. He sprung from place to place. Now, having an elementary school kid show his positive emotions through such bouncy behavior is certainly out of the norm, and ultimately something we'll want to get a handle on. But for now, I get to see his pure joy. He glowed.

Yellow jello, reading comprehension and gym class.

2011-03-01T21:12:00.005-05:00

Oh, my independent boy.

- This morning before school, I briefly noticed E. walking around with a package of yellow jello, but i didn't think much of it and went to go help someone with something. Just before we left to take him to school, he came to me and said, "I need a top!" I looked, and saw a Tupperware container full of boiling water (from the instant hot) and jello powder. "I made it myself!," he said proudly.

I know- boiling water. And usually these things annoy me. But he'd taken his medicine nicely already, after a horrible debacle the day before, and I was just pleased with him. I covered it over, and when he got home from school he let his little sisters each have some as a reward for doing well at the dentist.

- E. did not want to do more than half of his homework at the normal time today, and I gave him a pass once he'd at least completed that. Later, at a time when we usually can't get work done, I sat him down in my lap and handed him his work. He opened his reading book and just read it, answering the questions on his worksheet as he went along. I didn't have to help him or even prod him along. And later, he told me some information from the book that he found interesting. Just because.

- A few nights ago, E. began telling me things he would change about his personally tailored school program. Some of them, I agreed with, but it was important that he agreed before we asked for anything. So I asked him more, and we wrote up a letter about what he wanted and talked about whether he should give it in at school. We haven't done so as of yet.

Tonight, he said, "One of the things is happening!" Apparently, he found himself with an opportunity to talk to the director of his program, and he asked for mainstream gym, where a couple of his friends already go. And they said yes! At least, so says E. But he has no reason to be wrong here.

I am so excited that he is being assertive for himself, and independent in productive ways.

Oh, P.S.- A shout out to N., the very first high school girl to come to help out with E. She has married and moved on, but apparently stumbled onto this blog on her own. Hi N.! Hope you're doing well!

We're living in a time.

2011-02-25T10:23:00.003-05:00

Lately, my kids and I have been talking about how we're living through a time, a time that will be in history books. I remember when I was in middle school in 1989 and 1990, we had that same feeling. Communism was falling, and nobody knew what would come next. It felt like the ground was subtly actually shaking.

It seems like every day there's something new now in the Middle East, and there are no signs that it's stopping any time soon. As a parent, I view this very differently than I did as a student. Students throw caution to the wind, which is why so many revolutions come about through them. But parents...

I am scared for my children in a world of instability. I know that sometimes we have to go through upheaval to get to something better. But it is so, so scary. Because I'm responsible for more than me. I have to make decisions for a whole family, and to keep them safe. I know people in different countries, and worry about them. And I know more about the world and its patterns than I did twenty years ago. So I'm scared.

It's a good thing I have faith.

I can be flexible. I am calm.

2011-02-22T13:56:00.006-05:00

These are the two new defining principles of E.'s education.It was decided at his most recent behavioral conference that we had to take everything he might be working on and boil it down to two or three things, so he knew what to work on. So these became the buzzwords. And I quickly learned that they apply to everything.

Any time E. doesn't want to do something and does it anyway- like doing homework when he'd rather play computer, or staying away from his DS when he's not supposed to use it, or going to shul without his favorite siddur when he can't find it- he gets rewarded for being flexible.

And any time he does any of this while not exploding, or doesn't do what he should, but refuses calmly, he is rewarded for staying calm. I actually got an email from his teacher last week that said, "E. was upset about having to go to a certain class, and he threw his penny-board and refused, but he did it calmly." My first question: How does one throw a penny board calmly? But apparently, it's possible.

Honestly, while I get the calm thing, I think the flexible thing is being stretched a little too far. I'd rather E. know exactly what he's doing right. "Yay! You didn't steal the toy from your sister!", vs. "Yay! You were flexible! You wanted to steal the toy, but didn't."

But the logic behind this is there. because so many of E.'s issues really do stem from these two things. His need to have things his way, and his inability to control his reactions when that's not possible. While my instinct is to get him to see other people's perspectives and see that they matter, the truth is that he can't do that. A lot of people, much less eight year olds, can't do that when they're fired up, and E. is in a perpetual state of fired up. That, we can't change, so we work with what we can.

So what do you do? You teach him that sometimes he won't get his way, and needs to bend. In fact, his behaviorist uses a picture of a slinky to remind him about flexibility. And we have seen some success. Last week he didn't want to go to the dentist, but he sat in the back of the car and said, "I do not want to go, but I will be flexible." And that was it.

Watching this progress can be like watching ketchup come out of an old fashioned ketchup bottle. But as the slogan said, "Good things come to those who wait." I like things to happen faster, but I guess I'll have to be flexible.

Progress? Time will tell...

2011-02-19T21:17:00.003-05:00

Did I mention the act of vandalism E. committed in my house? A few weeks ago he cut down a window blind. Cut down. Why? "Because I wanted to see outside." Of course.

So we punished him- no computer until the new one comes and gets put up. It would take about two weeks. He was not happy. I was not happy, largely because I thought my life would be a living hell trying to keep him away.

And yet, after the first couple of days, it was largely OK. The day after, in fact, when he would normally ahve his computer time, he took down a Boggle game we got recently and asked to play. And he found at least two words per round. BOGGLE, people. For someone who gets easily overwhelmed when he sees twenty math problems on a page or one problem when the numbers are too big... Boggle.

Anyhow, we made it. The blinds came in, and are up. They came before Shabbos with no time to install them, and E. didn't bug us the whole Shabbos about them. And when Shabbos was over and the husband started unboxing them, E. said, "I will never cut down blinds again." Then he looked at me and asked, "I said a good thing, right?"

Huh.

How to torture a parent of a young child.

2011-02-15T09:24:00.006-05:00

Give their child(ren) Fox in Sox.
Don't believe me? Here are the words.

This book gives me nightmares; it's almost as bad as reading about The Waiting Place in All the Places You'll Go. But check this out- this girl's got it covered, though I don't know how her future kids will take it. It certainly cuts down on the time it takes to read the book, though.

A familiar song...

2011-02-14T14:19:00.002-05:00

Isn't it amazing how a great song can just change your day?

I remember when I was in junior high and high school, one of my favorite songs would come on the radio and we would stop everything for it. Or keep going, and it would just energize us,a nd we'd dance through life.

I still have songs that are current that I love. And sometimes when they play, I'll stop life for my kids and just dance. But there's nothing like an oldie. This morning, a song from high school came on JM in the AM, a Jewish music morning show. I'd just dropped the kids off, and I was dreading a full day. But there was Daagah Minayin, the original one. And I was gone. GONE.

Singing at the top of my lungs. The beat. Bopping to the music. Remembering the dances and the late night joy and the friends and people I only met for a day and danced with for hours. It wasn't even conscious- I just went with it. And it exhilarated me. And it wasn't even about the words of the song, which would be enough to get me going. (The past is gone, the future isn't here yet, and the present like the blink of an eye. Why should we worry?)

Ah, an oldie. I love the flashbacks. I read once that that smell is the biggest memory sense, bringing back entire worlds. For me, that's got to be song.

Good news!

2011-02-09T12:29:00.003-05:00

Who doesn't like good news?I've been a bit of a downer lately, so I'd like to spread a little joy.

First of all, progress. Progress is good. We have set up a behavioral conference for E., with his school psychologist, behaviorist, and home therapist. And me, of course. Why we've never done this before, I don't know- maybe logistics. It's all been through emails and phone calls and one person a ta time. But we will all talk and come up with a behavioral plan that works for everyone, largely focused on keeping E. flexible. ( This seems to be the root of a lot of his negative behavior.)

Next, and way cooler. Remember how E. got pulled from a bunch of his mainstream activities? Kicking and screaming (as politely as possible), I got them to keep him in mainstream davening (prayer) because I was convinced he benefited even with his behavior issues.

"How can he get anything out of it if he can't sit still?" they asked. "Trust me," I said. "He does. We have precedent." And it's true. E. picks up knowledge and information when you have no indication that he's paying any attention at all. So we set up a behavioral plan to help him sit still, and let him be.

And guess what? I just got a fabulous email that starts like this:

E. did not sit nicely during davening today...because he was standing at the shtender as the chazan!

Translation: He requested (politely!) to be the one to stand in front of the class and lead the prayers. Out loud. And slowly. This is normally a recipe for disaster for him, and is a skill the school is working on intensively. And yet, the assistant in the class said he did one fo the best jobs she's heard all year. Clear, loud and poised.

Squeeee!

Not only did he know exactly what to say, when to say it and how (See? He was listening!), but he stood still, and showed ability to accomplish another school goal. I firmly believe this is a combination of sheer tenacity and Hashem's help. Because again, it has shown up in a prayer context.

A little Life is Therapy addition- The use of a standing shtender, aka a lectern, can be very grounding for children who shift and move around a lot. And in orthodox Jewish circles, it's pretty easy to get a hold of one AND a normal thing to do for boys to use in general, as they learn.

This is beyond cool.

2011-02-07T23:08:00.005-05:00

Hat tip: Elise at Raising Aspergers Kids

Hello again! And slightly dejected.

2011-02-06T21:44:00.002-05:00

Been awhile, I know. Between midwinter break and the snow days, I had at least one kid home for over two weeks. And then I had to put the world back in semi-order.

So here's the thing. We go through life, and we get this whole happy, purposeful vibe from the knowledge that we do things, and our actions affect our world, and there are results, and we move on and do other things. I've been rereading my Malcolm Gladwell books, and in Outliers, he spends awhile discussing the idea of job-satisfaction and progression from purposeful work. For work to be satisfying, it needs to have a) self-control- you get a say in how it's done, b) a clear purpose, and c) a clear relationship between the amount of effort you put in and the amount/quality of the product.

How many people have jobs like that? My job, raising my kids, sometimes feels like that. But sometimes...

We have this concept in Judaism of avodas pherach, useless work. Like if you're told to fill a barrel using a pail with a hole in the bottom. Or if you fill it with a regular pail, and then the barrel gets dumped out, and then you do it again.

Your average parent's work feels like this quite often. Clean a room up, or a child, do it again ten minutes later. Discipline a kid for something, same mistake a week later. It feels like it keeps going on and on and on.

But what if it really does go on forever? What if your kid makes the same messes over and over for years? If you work on building and disciplining in a self-control skill, and four years later you're still doing that? How do you keep going?

I know that in reality, the progress is there, somewhere. Maybe it's hidden underneath, only to pop when some other skill develops to allow it to come out. Like the kids who don't talk until they're two, but then it's in full sentences. But I don't have that bird's eye view. Here, on the ground, something's got to keep me going every day. And I'd rather it not be denial.

I like to aim for faith, and prayer. But sometimes that's too abstract for when I'm in the trenches and spinning. It shouldn't be, but it is. I'd love to be able to dial up Hashem like you call your mother or best friend or parenting class instructor in a desperate time and say, "You gotta help me!" But I can get too disconnected, too focused on what looks like futility in front of me.

I'm feeling disheartened right now. My kid's behaviorist told me he's achieved only one of his goals in an entire year. She doesn't know how to do any better. We're bringing in outside help, but they all seem to say the same thing. a) Your kid's too smart, and inconsistent. b) This could work if you were perfect at implementing it, maybe. i really don't want to hear that again.

I heard recently from a shul rabbi that if you go to a doctor for treatment and he tells you that you cannot be helped, you should run and never go back. If he says he can't help you, OK. That's true. But how does he know nothing can be done? He's too limited. Modern science is too limited. At that point, he's the same as your computer programmer neighbor who doesn't know how to help you either. So you've got to look to the Only One Who Knows.

But His ways are just so unclear sometimes.

I lost it yesterday. Completely lost it.

2011-01-25T20:11:00.003-05:00

As in gone. Yelling all over the place to anybody who crossed my path, about messed up scattered books and nobody helping out and having my cable modem canceled and who knows what else.

Why? Because it finally got to me.

We got a new computer recently, because the old one died. E., being E., hung around constantly through the process of setting it up, which took hours, and then kept trying to come into the office and use it. Nothing would deter him, and within a day or two our patience was very very thin.

Then, he decided he would rebuild the old computer and get it working (which he's actually done in the past). So he started schlepping the old computer parts around the house: the CPU, and ancient monitor he found in a corner, a keyboard and a mouse. Then he looked for an outlet to plug it into, and could only find one in the bathroom. The bathroom! So he lugged it all in there and plugged it all into a surge protector strip he grabbed from somewhere, after searching half the house and leaving the mess behind.

When I found it, I yelled like mad, and told him that he had to get it all out or he could die. That seemed to penetrate, and he moved it all, but then he put it in the office, taking up all the floorspace. And I only had five minutes to deal with it between dinner and baths, and the cable company called about a bill that didn't go through right, and I tripped on the old CPU and dropped the phone and it ended the call.

And I snapped. I had spent hours cleaning up that office for the new computer, chastising myself for letting it become such a pigsty in the first place. But now I remember why. If you put effort into cleaning up, and then it's destroyed that day, or that hour, or five minutes later, not just a little but enough to make you start over with hours of work, you eventually stop trying.

I want a clean house- really, I do. My cleaning lady had to call me to the kitchen last week to get E. to stop messing up every surface she had just cleaned when he made a sandwich. I know that he;s just not aware, and doesn't remember. I know that in areas like this, he's like a two-year-old sometimes like this. But to accept it... How?

And it's not that I don't accept the concept that my kid's impaired. No, it's much less noble. i can't deal with the inconvenience. Why should my family have to deal with their things constantly getting messed up? How will my other kids learn to maintain a clan space? M. was immaculate until E. started coming into his room and messing things up regularly. Now he lives in a room where you often can barely see the floor, even if E. does nothing. He doesn't see why he should bother, when the last time he cleaned, E. messed it up in fifteen minutes a week later. And the cleaning had taken M. two weeks.

I'm tired of doing and immediately having it undone. It's disheartening. You actually see the results- what you could have, and then it's gone. So I was feeling sorry for myself. And I screamed because of a small bookcase mess in a room that had just been cleaned up the week before, because I could see it all descending again.

S. is smart. She pulled me out by a) offering to help, and b) telling me I was probably scaring the little kids. My daughter is now giving me mussar (constructive rebuke). That's something new.

An update- he cares! Thankful Thursday.

2011-01-20T19:42:00.004-05:00

We recently got this email from E.'s teacher:

"I was complimenting someone on a new haircut and E. chimed in, "I got a haircut on Monday!" From there, we started talking about many different things. E. maintained eye contact for most of the conversation and stayed on topic. He remained patient when I couldn't hear him so well (in the loud lunchroom) and had him repeat things several times. He also showed interest in what we were speaking about. For example, I reminded him about when I was looking to buy a house near his and he asked why I didn't buy it. Then he asked me where did I end up moving to. It was so lovely!"

Cool, huh? And then yesterday in the car, he was riding with me and the little one, and I asked her about a certain friend of hers from playgroup. E. turned to her and asked, "Is he your best friend?" And she said, "Ya!" Nobody invited him to speak, but he did. And he asked her, not me.

I love when he does conversation. And I love when he interacts with the little one- they're so good together, and he can really be a big brother to her. He even helps her with things, and likes to teach her things.

Good stuff. I'm thankful.

Do you have a time machine?

2011-01-17T20:38:00.002-05:00

A few months ago, E.'s school had a parents' event. At the end, either you could take your kids home or leave them until the school day ended an hour and a half later. I needed that time, so I left him, as did 60% of the parents in his class.

A few weeks ago, he vaguely mentioned that he wished I'd taken him home. I sympathized, and we moved on. But tonight, he brought it up again, right before bedtime. I don't know why. It somehow took over his head, that he needed for it to have happened his way, and if not, he would kill me.

When pressed, he didn't see how killing me would help him much. ("You can't leave my room before I kill you!") He still doesn't quite get that it's permanent- it's just something he says to be extreme. But it's the first time he's been this upset about anything that literally cannot be changed. He was shrieking and shaking, and I thanked Hashem for melatonin, because it took over eventually when I got him calmed down by asking him to tell me what his time machine would look like.

When you think you've got everything figured out, even if it's hard stuff, suddenly there's a curve-ball. Go ahead, Ima- change the world for me. Yeah, I'll get right on that.

My morning meds mishap.

2011-01-14T11:19:00.003-05:00

Today, E. dumped his meds out three times before he took them. Three times. It's the yucky tasting stuff, but we basically have a routine going. I know the perfect amount of grape juice to put it in, and even E. will sometimes recite, "I hate it, it's yucky. but I'll take it anyway." He has incentives for taking it, and punishments for not taking it, plus extra punishments for spilling it out.

And yet today, three times. That's six pills, at just under a dollar apiece with the copay. And there was no really good reason. He was upset because it's possible that our Highlights subscription lapsed, and while we'll renew it, he'll miss an issue. And yes, that issue must be delivered to our door with the proper addressee, so it can't be bought elsewhere or borrowed.

Kids are weird, people. Weird. Or maybe just mine.

I was proud of myself, though. Aside from a large "NOOOO!" when he dumped it out the first time, I stayed calm and just recited incentives and consequences, and just kept remaking it. Now he really knows I mean business here. So, a growth moment for Ima too.

E. raises his hand- Thankful Thursday

2011-01-13T15:47:00.009-05:00

E.'s school has done a pretty good job of teaching him to raise his hand. Sometimes, when we're standing in the kitchen with a bunch of people, E. will decide he wants to say something and just raise his hand. Usually, he even waits to be called on before he talks.

E. was recently in shul (synagogue) for shalosh seudos, the third meal that we eat on Shabbos. He and M. go there with the husband each week in between mincha and maariv (the afternoon and evening prayers). The rabbi gives a speech during the meal, and occasionally one of the men will ask a question.

So on this week, the rabbi posed a question, and was about to answer it, but E. raised his hand. And the rabbi called on him! E. asked a question on the question, based on all of the siddur-reading he's been doing. The rabbi acknowledged that E. was right, but that it wasn't the topic being discussed, and they moved on.

I am so, SO happy that E. now feels comfortable enough in shul to ask a question, even if it's not something kids do. We explained to him that he should wait until after the speech and tell his father, who will take him to ask the question. But still...

We have worked so hard for E. to be comfortable in shul. We think it's important for his future life, and that he will internalize what goes on there even if he's not ready to do it, and we think the holiness of it all enters him just by being there.

So here he is, comfortable with the rabbi too, and interested in how things with prayer work. And we've seen the holiness work. So far, so good. Thank you, Hashem.

Positive feedback. And gaga.

2011-01-11T19:45:00.006-05:00

Early last week, we went through somewhat of a minor crisis with E.'s school. At least it felt like one. Basically, due to the inevitable winter backslide in behavioral control, they wanted to reduce E.'s level of participation in some of his more mainstream activities. I was upset, and fought with various staff members (politely, I hope) for a few days.

Finally, we worked out a system where we let some activities go, kept others, and set up a system to help him with the ones we kept. They also committed to ramp up the behavioral work in general. Basically, I know E. has body-control issues now, but a) help him with it, and b) please remember that he's awesome.

We had this a lot last year, during the great medication switch. We were all so focused on reporting his negative behavior so we could calibrate the meds that we lost the positive. I had to call the school and say, "Yes, it's difficult, and I still need to know that. But tell me good stuff too, every day."

Over the past week, I've gotten a bunch of these little notes about good things he's done. Today, I got four. FOUR. And all were related to some of the issues we're focusing in. Here's one of my favorites:

We want to let you know that at recess, E. participated in a group game without any teacher influence! The class was playing gaga and E. joined right in and followed the rules!

It was so exciting to see!

How cool is that?

"Look!"

2011-01-05T11:39:00.002-05:00

It's been awhile since I've posted on something the little one does that makes me cry, because of it's simplicity and the fact that I now know it's not a given. So here we go.

A few weeks ago, the little one was sick for two days and stayed home from playgroup. It's the teacher's thing that in that case, the sick child gets a call home from the playgroup wishing them a refuah sheleimah, aka "Get well soon." In fact, the children sing a song that goes like this:

Refuah sheleimah, refuah sheleimah,
Get well quick! Don't be sick!

They called us, and we weren't home. So they left the message on our answering machine. The kids sang the song, the teacher helped them say, "We love you! We miss you! Come back soon!", and to blow kisses to her.

The little one listened to it and loved it. And since it's recorded, we still have it- I just don't erase it. Because I played it for her a second time that day, and she figured out she could hear it again and again.

Now, listening to something over and over is a pretty typical pre-schooler trait. It's also a typical autistic trait, so no big deal here. But somewhere around listen number five, the little one holds up the phone (you can access our machine from there) and says to me, "Look! Look!" Then she held it toward me so I can listen too.

Happy sigh.

Autistic kids don't, by nature, care if you see what they're doing. They will not show you picture's they've drawn, or that they figured out how to ride a bike. It's not even really that they don't care- it doesn't occur to them to do so. So every time the little one says, "Look!", I know it's a gift. My child cares about my opinion. She wants to share, and to see me smile. What an obvious blessing.

Cool older posts.

2011-01-02T20:48:00.003-05:00

So I was over at Love that Max, and Ellen compiled some her favorite posts for the past calender year and had others link their favorite posts from their own blogs. So I went looking, and I found that last January was pretty awesome. So as I deal with my current life issues that make frequent posts a little difficult (not necessarily bad, but busy), check out last January's roster, and feel free to comment here or there.

Some samples:

Have a good day!

An awesome forward.

2010-12-29T21:44:00.003-05:00

S. has an email account. Aside from her school friends, she knows a lot of people from camp and just around from different activities she's done, so this helps her keep in touch. One of the conditions of this account is that I need to have her password, and as of now she's still good with that. I monitor the account here and there, based on her usage of it.

I don't know why I was originally surprised that at least half of her email is forwards. So many forwards. All the ones we've seen and discarded, plus so much pre-teen stuff. But recently, S. got something that I just love, especially for pre-teen and teenage girls. It flashes, "You are beautiful!", over and over, with the bright colors to match.

Have a good day.

The practical lessons of snow, as a homeowner- a mashal (parable)

2010-12-27T18:54:00.010-05:00

So there's a big storm coming. What do you do? Hopefully, you prepare. Shovels, salt, boots for everyone, groceries , entertainment. Basically, you think about what you'll do while you're stuck, and how to get unstuck.

The snow comes. You hunker down and watch it while it's at its strongest, to stay safe and warm. When it lets up, you fight the urge to stay wrapped up indoors, and you go out to shovel. You don't want to be doing that, but if you don't, a) you won't be able to go anywhere, and b) nobody else will be able to use your sidewalks, or they will try and fall and sue you (or the city will give you a ticket).

So you shovel. And the instinct is to just get it done and go, because it is very hard work. but you don't. You get rid of everything you can, carving a wider path and getting the driveway smoother, because you know what's coming.

The Freeze.

Overnight, all the powdery powder will become hard, wet ice on top and a slushy mass underneath. It will be either a) harder to lift, or b) impossible to move. So if you don't do it today, it will be either harder or impossible tomorrow. And if it's impossible, you will be stuck with a huge mound of snow and ice in an inconvenient place, possibly for weeks.

It struck me, as I was shoveling out my car again after being plowed in for the third time (yes, I'm thankful for snow plows), that this is a perfect mashal for dealing with life's difficulties. You stay low and safe when there's nothing you can do, but you've got to get moving on them ASAP or they will build and get in the way of your life. You will be frozen in a morass of mess. It's like that page in Oh the Places You'll Go with all the weird looking structures that block you from having any idea where you're going, or even worse, The Waiting Place.

And like with snow, sometimes you're going to need help- don't be afraid to ask. Which leads me to my PSA of the day. Years ago, I heard a news anchor announce that people with asthma, heart conditions, or who have muscle issues shouldn't shovel snow. She actually said, "If you can't jog a flight of stairs without getting out of breath, don't do it."

I laughed at her. If I didn't do it, who would?

That night, I had an asthma attack and threw out my back.

SO, if you have medical issues and there is someone you can ask to shovel or snow-blow for you, even if it's awkward, do it. If you need to and can pay someone, do it. The money you spend pales in comparison to you chiropractic bills, or the copay to the ER.

That is all.

Why I will pretty much never be a homeschooler.

2010-12-26T16:27:00.003-05:00

So let's say it's snowing (hypothetically, of course). And your husband isn't home. And none of the kids have anything going on after 12:30 because of said snow. And you are all stuck in the house and you pretty much know you will be home all day with the kids the next day too, also without your husband. Hypothetically.

Thankfully, you've done this before, and you checked the weather, so you went out the night before to the one store that was actually open on December 25th and got some project supplies so people will have something different to do. You even went to the grocery store at 7 AM the next day (to beat the snow) to get milk and baking stuff. (You tried to buy a second sled to replace the one you just found out is broken, but Amazing Savings is out and you are not going back to Target on December 26th.)

So you're prepared. And by 3:30PM, you've made corn muffins and peanut butter cookies and done a seriously cool project with most of the kids. And you're feeling accomplished. Until you realize.

You have at least four more hours to cover. And twelve the next day.

I'm an inspiration person- I do things in bursts. It's not natural to me to plan out an entire day in portions, and then do it again tomorrow. I know that tonight I'll make pancakes and eggs and tomorrow, the kids can hopefully play in the snow (which comes with its own challenges), and do the other stuff I got them. But I look ahead of me, and all I see are the blank, unscheduled hours...

The only thing saving me is the snow. No matter how much it has messed me up in the past, snow is magical. I think it helps to stay around kids to preserve that, and it doesn't hurt that I know how to drive in snow if I need to. Anyhow, snow is... just something amazing. The whole world goes white, and you see it happening.

And everything just stops. Which is the hard part, but also the cool part. Hot chocolate, S.'s peanut-butter cookies, and gloves and hats on the radiator as I peel layers off the children as they walk in the door from playing in the snow.

Of course, talk to me tomorrow after I've shoveled the walk.

Or maybe that's what the older kids are for...

Overheard in carpool.

2010-12-23T10:20:00.003-05:00

E.: "Chaim- I'll do lots of things for you, and then you'll be my best friend. Sammy told me to."
Chaim. : ?

I don't know if E. was asking for ideas, or if the topic came up in some class. E. has been trying for ages to get this kid to be his best friend. I've heard conversations where E. will just say to him, "You're my best friend", and another kid will say, "You know, you have to ask him. He has a choice."

Today, E. chose to avoid his past conflict of excluding Chaim's actual best friend by including him: "It will be Sholom, Chaim and me." So I guess he's learning along the way. And truthfully, who of us didn't go through the "If I do things for you, you'll like me" phase?

(BTW, psychological studies show the opposite to be true. The more you give to someone, the more you will like them. It backs up nicely the whole idea of parents raising children who can do basically nothing when they're born, as opposed to animals. Hashem hard wired in a system to help us develop love for our kids.)

Anyhow, E. is learning some hard lessons. But at this point, I'm glad he stepped into the arena at all. He ended up being pretty resilient from his last difficulty with being this kid's friend, so I guess this is just how he learns things. I just hope he doesn't get teased too much for putting it all on the table. This kid has no hidden agenda- he wants something, he figures out how to do it, and tells you straight out.

There's a purity about it that I love, though by necessity it can't and probably shouldn't last. But for now, I'll use it to follow along with where he's at. And pray he navigates it all safely.

My happy, tiring weekend.

2010-12-21T11:56:00.005-05:00

Have you ever taken a red-eye? The husband does it all the time, and now I get why he's so exhausted. I came home almost falling over after doing two late night flights in a row.

We had a wedding across the country, and while I was excited to get to see some family who lives out there, the schedule made me nervous. Even though we weren't bringing the kids, I knew I'd be zonked. But it ended up being so worth it, for reasons I never would have guessed.

Our friend's son was marrying into a Sephardic family (Jews are often separated into Ashkenazic Jews, who originated from Western countries, and Sephardic, who originate from Eastern countries.) They have a lot of customs that are very different from what I know, and I'm familiar with some of them. But they took me by surprise.

When the grandparents came walking down the aisle, with the slow music playing, the people watching burst into applause. Applause! How cool is that? And the grandparents were beaming. One grandfather even blew a kiss into the crowd. "It's like the Oscars", the woman sitting with me said.

I kept thinking how appropriate this is. Our rabbis teach us that "Ateres Z'keinim b'nei banim", the elders are crowned by their grandchildren. You raise your kids, pray you did OK, and watch them raise theirs. And I imagine that at a grandchild's wedding, there is a tremendous feeling of pride and accomplishment. So when they walk down the aisle in front of their friends and family, it is so perfect when the room explodes into applause. Because it gives them credit for all of their hard work.

The more time I spend as a parent, the more I appreciate the work of other parents. And on special days like these, I want them to be recognized, because usually they are not. I have heard so often, "You think the wedding is for the bride and groom, but really it's for the parents", and I used to not understand the circles that break off from dancing around the kallah (bride) to dance around the mothers. But the more I go to my friends' kids weddings, the more I get it.

There is achievement in bringing your child to any milestone. How much more so to sending them off to build their own home. And it's got to be so scary too. So, much like we distract the newly married couple from their inevitable fears with joyous celebration of the moment, the parents and grandparents deserve and need the same.

May we all share many simchas (happy times).

E. and the letter from Nintendo.

2010-12-16T16:21:00.002-05:00

E. got a late Chanukah gift today.

A month or so ago, E. came up with the idea that Nintendo should make a game system that combines two of its current systems. He made a paper model, as he often does, and played with it like it was real. Then he decided to send the model to Nintendo.

"Ima!" he said. "I will send it to them, and they will make it. Then I will be the first one to buy it!" "

"E.," I told him. "If they make your idea, they'll give you one for free." He was soooo excited. So we found out the address and sent it off.

And today, they sent him a letter. They thanked him for his idea and the picture, said they couldn't use outside suggestions for legal reasons, and sent him a free Mini-Mario poster signed by the Nintendo employees. And he was soooo excited.

"A Mario poster! Look! They sent me a poster." I had been worried that he'd be disappointed with the poster because he wanted an actual game system. But he hung both the poster and the letter on his bedroom wall.

Very cool stuff, and I know he'll remember it. When I was eight, my parents took me and my brother to DisneyWorld. On our second night, the two of us made pictures for Donald Duck from one of those books where you paint water and colored patterns show up. We were all ready to give them to him the next day, but my parents somehow lost the three day passes after only two days. Oy, was that a miserable morning.

We ended up going to a waterpark there instead (which my parents had told us we would not go to as puhishment for some behavior from us kids). And the pictures stayed with us. So we mailed them in once we got home. And soon after, Disney sent us a typed up letter "from" Donald Duck to say thank you, along with an eight by ten photo of Donald in front of the Magic Kingdom.

We were over the moon. Who got a typed letter at ages 8 and 6? Nobody we knew. And from Disney! And it addressed us as Mr. and Ms. Both the letter and the picture were framed and hung on the family room wall, where you can still find them.

So I'm so excited that this happened to E.

Appropriate Awe

2010-12-13T14:04:00.005-05:00

Every so often, E. will do something that is clearly not of this lower world. In the most recent case, it was standing still.

E. can't really stand still. He tries, and his behaviorist is teaching him all about "Big Boy Standing", complete with straight posture and arms by his side. But he can't hold it on his own, without prompting.

I may have mentioned that E. attends shul (synagogue) regularly. He did it for awhile last year, then stopped for months, and we got him to go back using the husband's genius idea for a point system in which the points you earn one week get lost if you don't go the next. (You still get to keep all the points from the weeks before.) What he earns points for is hearing the weekly Torah portion, and he gets a point per pasuk (verse), which E. likes because if his numbers thing.

Anyhow, now that he's there and he's comfortable, he has frequently been given the honor of opening the aron (the ark/cabinet that contains the Torah scrolls) for the prayer of Anim Zemiros. When you do that, you open it at the beginning of the prayer, stay up there (it's on a podium) until the end of a prayer, and close it and come down.

I happened to actually be at shul recently, and caught a glimpse of E. doing this job. As the prayer went on, he was standing in front and to the side of the open aron, stock still, arms at his sides, staring straight ahead. I later found out he does this through the entire prayer, at least five minutes straight. No moving.

How? He can't do this any other time.

I believe he feels the holiness- he knows. And it helps him along.

PhD in life- Beneath the Wings link

2010-12-10T09:44:00.002-05:00

Please please please check out this post over at Beneath the Wings. I wish I'd read it twenty years ago.

And have a good weekend.

A Chaunkah miracle, E.-style.

2010-12-09T12:44:00.004-05:00

E. has a new obsession: Diary of a Fly, a Worm, and a Spider. He found these print-out forms online that look like pages from the books, and you can put in your own words, and he's been recording his own life in the diary-form from the books.

This AM, he had me helping him with his version of Fly's list, "My mom told me to remember:" E.'s list (without my help):

Hashem controls the word.
Don't watch too many DVD's.
Don't bother other people.

Cool, huh? Amazing what sinks in as important. I still remember when M. had to write a mother's day card that included answering, "My mother always says..." His version? "Not to eat in the playroom, or we'll get mice." So I love what sticks with E.

And yet still, not the miracle I meant. So before he wrote the list, he went to get a piece of lined paper for planning. He got a whole stack, as usual when he gets paper, and brought it to the kitchen table. Then he took one paper (only one!), and then said, "Can you put back the rest?" I told him he could do it, and he did, before he started writing.

Usually, he takes half a ream, uses part of each page, and tosses the rest wherever it happens to lands. There's paper pretty much everywhere in our house, including a virtual carpet of it in his room. So, this morning?

Miracle. So on this Thursday, Hashem, thanks.

My makers of lemonade.

2010-12-06T21:43:00.007-05:00

T. was in a Chanukah play that required her to have a tie-dyed T-shirt she made in school a little while ago. Only problem was, she couldn't find it. She'd been so rpoud of it, and looking forward to wearing it, and it was the night before the play with no shirt.

So after some tears, she moved on. We went looking through S.'s old stuff and found a pastel, wrongly-bleached and therefore two-colored shirt. (This is why I throw nothing out.) "Good!", she said, "But it needs to be more colorful." She asked for the fabric markers.

We ended up twisting and rubber-banding sections of the shirt tie-dye style, dipping them in water, and then she colored them with the markers. Me, S., M. and the husband all helped out witht the tieing, and she calmly and cheerfully asked people's advice and made her own decisions about the colors she chose.

When it was done, she was proud of it, and was happy to wear it even though it would be different from everyone else's. It turns out her teacher had her T-shirt the whole time, so she got to wear it. But she likes the other shirt enough that she wants to wear it just because.

I am so, so proud of her. My little girl is growing up in the most important ways.

E.'s typewriter, take two.

2010-12-02T18:53:00.005-05:00

I recently received this note:

Dear Ima,

I really love you, Ima.
Will you get me a DS?
I would really like a DS.

Sincerely,
E.

Sigh. We've been considering getting him one. He seemed to think it would work, because last night he threw a fit when I didn't come home with one for him. So much fun.

But you've got to admire his style.

Click Clack Moo.

2010-12-02T09:13:00.009-05:00

Have you read Click Clack Moo: Cows That Type? If you haven't, then you should. My brother-in-law calls it collective bargaining for pre-schoolers.

Basic plot- The cows on the farm have some demands for the farmer and refuse to continue their services until they get them. They communicate by typing notes on a typewriter. The farmer writes back.

A sample note:

Dear cows and ducks,

There will be no electric blankets. You are cows and ducks.
I demand milk and eggs.

Sincerely,
Farmer Brown

Last week, E. found DVD's of the author's books- those moving picture types- at Barnes and Noble. So all the kids have been watching them, and E. reads the books alongside.

This AM, I found the following note stuck under the girls' bedroom door:

Dear T. and the little one,

There will be no Dora blankies. You are T. and the little one.
I demand you play board games.

Sincerely,
E.

He even has his own home-made paper typewriter.

E. is a challenging kid. He's very challenging this week in particular. And yet, there's this to make me smile.

Happy Chanukah! Night #1

2010-12-01T17:04:00.004-05:00

Head on over to Aish.com's Chanukah page or to Chabad.org's Chanukah page for a little of everything on Chanukah, including the why's hows, and fun stuff for the kids and the wanna-be kids.

A painful entry to the social world.

2010-11-29T12:07:00.004-05:00

Just sent an email to E.'s school trying to figure out his latest behavioral stuff. He's been pretty difficult lately, aside from the flightiness. He's more volatile and less able to accept no.

In the past, large behavioral problems have come during developmental leaps like gaining original speech or acquiring pretend play. It didn't occur to me that this was happening now, but I had a conversation with him last night that revealed that he's working his way into social understanding.

Essentially, he wants a best friend. He wantd it to be a certain boy, who he met before this boy's current best friend met him. He feels he should have dibs. But these two boys are close, partially because they live near each other, and E. can't take it. He wants the othe oy to transfer school so that he can have the friend to himself. This all came out in a story E. wrote- he's into writing books right now.

We've all been there, right? But he puts it all on the table. And he hasn't been able to learn any of the subtleties of friendship yet, because it's only recently occured to him what it really is.

On top of that, he's been at us for ages to upgrade his gaming system and we've been refusing. Turns out, there are kids in his carpool who are at him to upgrade. So it's partly about peer pressure.

I don't know how to help him here. Unlike his other skills in the past, I can't really help him practice this. And he gets so frustrated!

Wish us luck.

She's gone.

2010-11-25T20:09:00.004-05:00

My friend who was ill has left this world.

And it feels like something inside me has broken, that nothing will ever be the same.

A week ago, I was feeling mega-guilty for not davening (praying) hard enough. I felt that I'd come to a place, out of necesity, where I believed that it was all going to be OK somehow. Not necessarily that she would live, but that if she didn't, everyone would manage. Her husband, her kids, everyone. And it had to be that way, becaue if it wasn't, Hashem wouldn't do it. And because of all of this, I couldn't ask Hashem with conviction to keep her with us.

It was like faith gone wrong. The most pious of people throughout the years have bombarded the doors of heaven to overturn decrees, and I couldn't move myself enough. I knew I would be sad, and that it would be hard, but I was resigned to the world as it would ineveitably turn out.

Now that she's actually gone, it somehow took me by surprise. That she actually died, That this woman who was so full of determination and perseverance and follow-through in all things, she died. And the world doesn't seem so OK right now. I know it is, but I don't feel it. What will they do? Who will take care of the kids the way she did? Who will understand their autistic son as well as she did? Who will remember to pay the right amount of attention to the girls?

I still belive it will work out somehow. But I'm feeling the pain now, days too late. And the pain feels so right.

I'll never see her again. At least not in this world, as we know it today.

May her memory be blessed.

Why you want the sister of a special needs kid as your kid's tutor.

2010-11-24T11:39:00.003-05:00

S. is a homework helper/tutor for an early elementary age kid in a neighborhood family. A couple months ago, she noticed that he was writing backwards sometimes. So instead of trying to figure it out or letting it go or telling the mom, she decided to go talk to the resource teacher in her school. She found out it was borderline OK, and was given some pointers.

Then, last week, his mother told her that his teacher had jusr recommended OT for his handwriting. S. asked what she could do- mom didn't know. So S. went and called one of our neighbors down the street who's an OT and has done handwriting teaches. She's going over there sometime this week to learn how to help this boy with his pencil grip, and what other tricks and tools she can use.

All her idea, both times. She encounters a difficulty, she figures out what to do about it and goes to a professional for help. And it's not even a question that she should be dealing with these things in her role as a volunteer tutor.

I am so optimistic for her as a mother one day. She'll be going in with so much more than I did.

Winter is here.

2010-11-22T14:39:00.002-05:00

OK, not technically. Every kid in my house has the real date memorized, and each year we redo the family argument of whether it's December 21 or 22. But for real-world purposes, my personal barometer tells me it's here.

It took us years to figure out that every winter, E.'s behavior deteriorates. Until then we just knew that certain gains came and went in intervals of several months. But one day we somehow figured out that it was the cold, somehow.

It's not that he's always horrible, or that he reverts back to where he was the year before, thankfully. But wherever he was at in, say, September, his baseline will take two giant steps back. So this year's "worse" is better than last year's "worse", but still worse than last month.

It mostly centers around his attention and irritability. This year, his irritability seems to be showing most in the form of responding, "I'll kill you!" whenevr he doesn't get what he wants. So much fun.

We had a school meeting recently. They told me what I already knew, and I reminded them about winter. We went through our yearly dance of, "What can we do to help thim through?", without enough useful answers. And I went home deflated.

I know what my kid can do. But this month, he can't do it. Or the next. Or the next! Where's global warming when you need it?

A rough week.

2010-11-18T11:17:00.003-05:00

Earlier this week, T. stayed home from school because she wasn't feeling well. Early afternoon, she spiked a fever and started gagging and shaking. I took her to the doctor because, obviously, she had a bad case of strep. Except the culture came back negative.

This made no sense to me at all. OK, a sore throat can be a virus. But this came on so strong and quick- when it's like that, it's always something (strep, UTI, whatever). I went home confused, with a duaghter asking where her "get better" medicine was. (As opposed to Tylenol, the "feel better" medicine.)

The next day, all was right in the world. The overnight culture was positive. Medicine given, and she was back in school the next day.

Why does this all sit well with me? Because it had three basic components that I often take for granted:

a) we know what it is
b) there's medicine for it
c) the medicine works

But it's not always like that.

My dizzy, headachy kid is still dizzy and headachy. Meds have been started, and may be working. Or not. Even so, there's no definite diagnosis. We're treating the symptoms, and not really well enough. Today, after a fairly good week, another day of school has been lost.

On the other hand, with E., we basically know what he's got. Aspergers diagnosis, with ADHD behavior and impulsivity. We know what meds to give for it. Unfortunately, most of them don't work. We cannot adequately medicate the ADHD stuff without stimulants, which he can't take because they make him OCD.

Plus, winter commeth. And E. is pretty much always worse in the winter. I recently had a meeting at his school where they let me know that his behavior is spiralling downward again. He can't sit still in class or at lunch, and his wandering body and mind prevent him from picking up both academic and developmental material.

I feel so powerless this week. I want my "If A, therefore B, and then C."

I should be turning to Hashem. This is all His system. And I'm trying. But that cause and effect thing isn't so clear in that realm, and I'm having a hard time using it to get through my days. The crazy busy moments are easier. The quieter ones, though.... not so much. I know they'll be OK. I'd just like to know when. And how.