Saturday, August 18, 2012

The night before kindergarten

This is a post I wasn't sure I should publish at the time--one year ago. I was worried about sounding insensitive to other parents, but as I read it now, it doesn't seem to read that way. I hope I'm not wrong about that! Everyone's allowed to be worried on the night before kindergarten, lest there be any doubt. :)

I've been rummaging around tonight, printing out a couple of forms that need to go in with James tomorrow, making sure he's got clothes, and putting a couple juice boxes in the freezer. Mostly I've been trying not to do what my whole body wants to do, which is worry.

Most parents do this, don't they? They're so excited about their kids' first day at kindergarten, but they are scared, too. To me it's amazing that I can be having the same kind of experience as so many other parents, and to realize that our levels of worry are probably about the same. The fact that James has Down syndrome, and that the list of things that could go wrong at kindergarten is almost literally endless, doesn't seem to change matters much. What surprises me even more tonight than that parents can be so worried about things that seem pretty minor to me, is that I can only be a little bit worried about James. We've had a few babysitters tell us, after babysitting James the first time, that they were worried or scared before they came. They'd think: "Will I be able to figure out at all what he wants? I don't know any sign language, and he can't talk! I really don't know anything about Down syndrome. What if something happens?" Afterwards they'd say, "I don't know why I was so worried."

The thing is, it's easy to underestimate a kid who doesn't talk. One wonderful thing about our daughter Isabel is she's grown up without this prejudice--she knows that what a person understands can sometimes have no relation at all to what he can say. She talks to James completely naturally, and always expects him to answer somehow, and she can play with him for hours. It's really fun for me to see her try to do the same with other kids who don't talk, and even, with rather more success than I would have bargained for, with the neighbor's cat. (She suggests rather elaborate pretend play schemes to the cat, tries to teach him how to use the toilet, asks him if he wants some water and waits for an answer, and politely insists on finding out his favorite color, pausing for long minutes while she waits for a response. She's also trying, without any visible success (yet), to teach it ASL. We've had a discussion about paws, but I'm not sure it's sunk in.)

We used to get so many people telling us, "We’re not equipped to have James in our class". It made me mad at the time, but now it's just a bit funny. Equipped? Almost all you need to know, I've concluded, is how to be patient. It makes me smile to see my old scriptures, from when I turned eight. I haven't used them since college. The end pages are covered with scripture references on pretty much one subject only--"patience".
There are times, for a mother of a child with special needs, when being a good neighborhood mom means concentrating very hard on being very quiet. Because, when other parents worry aloud about their five year old not reading yet, or acting a little young for his age, or making friends, it's hard not to think: you have no idea. Because what you want to say, so badly, when having this thought, is "Please don't worry about this. I just can't believe this is what you're worrying about." I watched "Marley & Me" the other week, and stopped in my tracks when I heard a line something like, "When you're having a crazy day, and even the laundry isn't done..."

Really? That's a crazy day for you? And the funny thing was, so much of that movie was so real-sounding--I had to wonder, is that what makes a crazy day for most people? Did that sound real to other people? I hope not. I hope when I say I've had a rough day, that you're not picturing a neglected washer/dryer combo.

Saturday, July 14, 2012

Futility, thy name is Mama.

Why do I do this?
Re-attach the Little People plastic silo to the barn every night.

Think I’m going to remember which stack of clothes in the drawer belongs to which size. What I should do, is just have a “too small” drawer, sort it every time it gets full, and box the clothes by size. The trouble is that last step—I sort it, think, “I’m sure a box will come along before I need to put this stack away.” It doesn’t. Back in the drawer! Re-sort! Re-sort is SO different from resort. Though, it is oddly soothing.

Save EOBs for more than a year. Am I going to be nostalgic for how much Blue Shield covered for the audiologist? Am I going to be tested on this?

Think that someday, “Cookie” magazine will send me more alphabet stickers, and I can finish labeling the binders that look like “I__B_L” and “J_M__”.

Balance my toothbrush on top of stacked men’s razors in the medical cabinet. It will always fall down into the sink when I open the cabinet the next morning. In my defense, the toothbrush cup also often mysteriously falls down, but onto the floor.

Give the "Band-Aid lecture" about how Band-Aids are for when there's blood (a little simplified, I know), and then worry that the constant stream of hurts are actually intentional attempts to draw blood in order to acquire the coveted Band-Aids. Just give them the Band-Aids already. Accept that they are small child body art, and that they must be placed in the exact, invisible location of the deadly injury caused by stepping on a single unpopped popcorn kernel.

Think, at the grocery store, that there is enough milk at home and that I don’t have to get another gallon.
Similarly, think: “We have eggs, don’t we?” The answer is always, “Yes, we have ONE egg. In a closed egg carton that looks optimistically full.” Also, by the time you get home, someone will have added it to pancake mix that doesn’t require eggs. He will also replace the empty egg carton, closed, in the fridge. You will discover this halfway through making chocolate chip cookies.

Thank goodness I’ve stopped:
Stacking the Ikea children's plates in rainbow order

Ditto with the Ikea children's cups

Keeping the HIPAA forms. You can tell a veteran hospital mom because she takes it, says “thanks”, and then gives it back with some deprecatory remark about shelves full of medical binders. Because you do have to take it, but you can also give it back. :)

Monday, May 7, 2012

Older sister goes back to baby days

I've spent the last couple days making a baby book for Isabel on Shutterfly, where there is, appropriately, a Mother's Day sale going on. Since Isabel's baby brother was born, she's liked hearing the stories of her birth and babyhood, and instead of asking for stories about ponies or ducks from an improvising Mama or Daddy at bedtime, wants to hear about when she was a baby, especially about the part where she was in the hospital for a while, and Mama stayed with her.

Isabel on the day she was born
Baby Bjørn had to stay for a while, and I stayed with him, as I did with both of my other kids (they've all needed more care in intensive or intermediate care nurseries after birth). I was glad I was able to stay this time, too, but it was hard for the kids. So Isabel, especially, likes to hear about how she wore an eye shade and lay under the lights to help her with jaundice, and how James and Daddy would come to visit.

It isn't just the stories--she likes to alternate being a baby, drinking milk out of a bottle, with being a mama, who always breastfeeds (the disconnect doesn't seem to bother her!). She cries more in general and makes "Curious George" sounds more instead of talking, but she's also very helpful--fetching the "C pillow" (Boppy nursing pillow) at opportune moments without being asked, and getting a wipe wet in the sink. Even the dolls are getting a lot more milk than usual, and more walks in their pram around the house, even if they do get toted around by the hair quite a bit.

Isabel now!
She's been very nice to Bjørn--kissing him and gently stroking his forehead, insisting on his right to more milk even if he just finished eating 2 minutes before (she's usually right!), and also wisely refraining from doing anything when she can't cope (she closes the door to where he sleeps if he starts crying, and sits on the couch with her hands over her ears). We've spent time together just we two while Bjørn is napping-- reading books, painting, and playing with toys. I think, though, she still needs a bit more help with the adjustment. Any good ideas for helping older siblings?

(Right now James doesn't seem to be having very much trouble, and he's incredibly soft and gentle and interested in Bjørn, but I remember he didn't have any trouble with Isabel either, not until she started sitting up.)

Wednesday, May 2, 2012

Baby Bjørn

Bjørn Diego Matta, born April 25th. He was 9 lbs 15 oz!

Bjørn had a little infection, so we didn't get home until Sunday. He's a very sweet, calm, and alert little baby.
We're so happy to be home, all together again!

Tuesday, May 1, 2012

How not to handle a snake

Isabel and the nature documentary are a match made in heaven. Occasionally something will make her run out of the room, and not always the most predictable thing--"spiny flowers with eyes!", anyone? It's all I heard as she ran out--but she is pretty unfazed by the standard scary animals.

Today we saw some of Jeff Corwin's show on Arizona, which was mostly about SNAKES! As we were watching, I noticed Isabel was playing with her spaghetti more than usual (a felicitous choice of lunch), and heard her muttering about the "queen snake" and how you had to handle him "just right" and how he'd "squeeze his prey like this". (Pretty sure she was thinking about the king snake, but am not sure whether she misheard or was making a statement by changing it to a queen. It was still a "he". You decide.)
As Jeff moved on to the next animal, Isabel demonstrated the next step of snake handling.

The world may not be ready.

Thursday, April 5, 2012

Early morning self-sufficiency

(This post got lost in the drafts folder, and since we've had so many interesting episodes of cleaning up lately, it's fun to see one of James' early attempts. :))

This morning, Marco had to leave very early to go to the temple, so James was left to his own devices while Isabel and I slept. I woke to the sound of a low rustle, and padding steps, and to the lid to the garbage in the kitchen opening again and again. I came out, and saw James putting something small in the garbage, closing the lid again, and heading to the living room. On the floor was a new box of Cheerios, the cardboard around the top torn apart, with several small pieces of cardboard on the floor. James came in and got another piece of cardboard, and put it in the kitchen garbage can.
First of all, I'm glad he knew where to find breakfast, and that he tried to open the box even though it must have been difficult. And I LOVE that he was diligently cleaning up after himself! I helped him open the bag inside the box, and he poured his own Cheerios. He's on his third bowl now. :)

A story before bedtime

I’ve learned you can download past episodes of Lake Wobegon monologues from A Prairie Home Companion. It’s the next best thing to having someone read you a bedtime story. I love to listen to one just before I go to bed to read my own book. Now if I had just thought to make myself a cup of tea before I sat down and put on my earphones…

Monday, February 13, 2012

James' Valentine gift to his class

James is in a typical kindergarten class, and loves it. He tries hard to do what his classmates do. Sometimes he can, and sometimes he can't. Last week we got a kindergarten bulletin about valentines for Valentine's Day. James' teacher wanted the kids to make handmade valentines, and to make sure the kids themselves wrote the names.

Now, James has some pretty significant fine motor troubles. He's only very recently learned to open his scissors, though he's been able to close them for a while. One of his goals on his IEP (individual education plan) is to cut within an inch of the line when cutting out shapes by next December. Until kindergarten, where the coolness of and emphasis on writing first came together for James, he wouldn't hold any writing implement more than about a minute at a time, and that was only as long as I was singing "The Wheels on the Bus".

James cut out 22 hearts, within about 1/4" of the line. For each and every one he cut out, he carefully and deliberately opened the heart, sometimes with considerable difficulty. Then he celebrated, jumping up and down and showing us the heart, sometimes shouting "ta da!" He wrote the name of every single one of his classmates. He can write nine of the letters himself with no help, recognizably, and for the others he needs hand-over-hand help. He knows all his classmates' names, and can identify each one on a written list. He kept me very strictly to the list, and made sure we went in order. For one particular friend, he got so excited he skipped to him, and then went right back to the couple he'd jumped. Tonight, while I was grocery shopping, his dad helped him write his own name on most of the hearts with more help before he was too beat to go on. Tomorrow he'll pop stickers on early and take them to school.

I have never seen James work so hard on something that is so, so hard for him to do. For James' classmates--he loves you!

Picture coming. :)