New Era, New Routine

Coloring a star is serious business.

Well, it’s official: all my kids are in full-day school.

For the past three weeks, things have been rather up in the air. I’ve been collecting a list of Things I Will Do When I No Longer Have Kids At Home All Day. Most of them are writing-related, but there are also things like going out and sitting in nature, which I haven’t gotten to do much of the last year or two. Maybe even a little shopping, occasionally. But then, for a while, I thought something else was coming down the pike in my world, that would call all that extra time into question. So I didn’t bother spending the time trying to figure out what my new world was going to look like. And then that “something else” didn’t end up coming to fruition, anyway.

So the first day of school pounced upon me without a whole lot of preparation. This is the first time I have ever found myself reeling on the night before school starts, asking myself, “Where did the summer go? It was unbelievably short. I don’t have a game plan yet for tomorrow when I’m by myself with time to work!”

Of course, yesterday I went from school dropoff to rehearsal to dental appointment, and by the time I got home, the morning was 2/3 gone already, so maybe it’s just as well I didn’t try to make a plan yet.

Still, I’m a person who does well with structure, and who gets stressed with lack of it. Our life with four kids is much easier if we know that Person XY does A on B day, and Person XX does it on C days. We’ve had the same pattern for, well, 5 years at least. But this year our families outgrew the carpool, so that changes the shape of the afternoon. And because I have the full day on my own, I’m taking more of the morning prep instead of trying to squeeze half an hour of work in between 5:45 and 6:20. (Or 40 minutes…or 45…) I’ve actually done the dropoff run the first two mornings. I’ve never done the morning dropoff. That’s always, always been Christian’s job. So clearly, things are going to be in flux for a while.

What I know so far is that the time between the boys’ departure and the arrival of the public school bus will be dedicated to reading comprehension with Julianna. This much I can set down in stone now, and make good use of a small block of time for something that gets pushed aside too easily in the afternoons.

Figuring out how to structure the rest of these days for best possible use of time? That’s going to take a while longer to figure out. But yesterday, remembering my friend’s words: Pace yourself, I paused at 2:35 p.m. and said, “I’ve worked all day. I think I’m going to play for half an hour until it’s time to pick up the kids.”

And I did. I played with a Shutterfly album of Colorado.

On to Day 2. Hopefully a pattern will emerge sooner rather than later.

Being Clear-Eyed About My Special Needs Child, And My Responsibility To Her

¾ of the way through Day 3 of iCanBike camp, the gym at the YMCA was starting to get less crowded as the more successful campers started heading outside with their volunteers to transition to independent riding. The speakers were playing “give ‘em hell” music like “Eye of the Tiger” and “How You Like Me Now?”, and at the far end, the head volunteer was trying to coax Miss Julianna, in her Frozen t-shirt and polka-dotted skort, off her roller bike and onto two wheels for the first time this week. She was not enthusiastic about the prospect.

And then the strains of The Heavy disappeared to be replaced by:

It worked. Soon enough, Julianna was circling the gym—slowly—on two wheels, the head volunteer holding onto the support pole on the back. Singing, of course. (Julianna, not the volunteer.) And about the time Julianna started sing-shouting, “The fears that once controlled me can’t get to me at all!”, she picked up some speed and the volunteer was able to let go and Julianna rode a bike about twenty feet without anyone holding onto her for the first time in her life.

Photo by ICanBike Fulton

As special needs parents, these are moments we cling to. Because the reality is that although these tend to be the moments we share, they are not the rule in our lives.

For every one of these, there are five or ten where I tell Julianna, “Put your clothes away,” and discover that she’s put her dirty underwear and socks back in the drawer with her clean clothes; then, when I scold her and tell her to put them in the laundry, she puts the entire contents of the drawer in the laundry. Or, in an excess of desire to be like her brothers, who are packing for vacation (and who are occupying every bit of my attention and then some), she pulls out every shirt she owns and dumps it on my bed. And when I say, “Julianna, we’ve got to make lunch right now. Put those back, and we’ll pack you after lunch,” she instead empties ALL of her drawers onto the floor of her room.

It’s hard for me to know how much she really doesn’t understand, and how much she is pretending not to. In the above examples, I wasn’t being very concrete. But often I do stop, look her in the eye, and speak very slowly: I need you to put your dirty clothes in the laundry…(pause)…and THEN…(pause)…fold your clean clothes and put them away. Sometimes I even have her repeat it back to me. And more times than not, the outcome is virtually the same.

It’s hard for me to accept that my 10 1/2 year old, who can read literally anything you put in front of her (well, okay, if you presented her with a foreign language or with medical jargon, you could stump her, but otherwise) really is incapable of carrying out a sequence of three simple instructions that she’s been doing every single day for years.

It’s also hard to accept that this experience gives credence to the stinging note on the final reading assessment of last school year–the one where it said she would be well served by handing her preschool books to read.

We’ve been very laissez-faire with Julianna…pretty much her whole life. Partly it’s philosophical, but mostly I think it’s because hey, we have three boys and it’s madness–madness, I tell you. This summer, for instance, I made a conscious decision to focus on getting Nicholas and Michael to swim lessons, because they can learn and learn quickly and be safe in the pool, and that’s one set of lessons we don’t have to mess with anymore! But Julianna isn’t served well by the same instruction–I mean, she does fine, but she’s so slow to progress, it’s a poor use of time and money–so right now she’s sitting out, and when fall ball is over we’ll spend the money on private swim lessons through the winter, when other things are not going on.

But I often feel my conscience pricked at the conviction that if I worked with her more consistently–on reading comprehension, for instance–that she would progress more, that she would be doing better. That I am underserving her mostly because I find the process frustrating. That I, in sum, am not being the best mother to her that I could. Or should.

And often I remind myself it doesn’t matter that much if it takes her 2-3 years longer to learn something than it would if I were more on top of things–because it’s not like we’re chasing a goal of success in trigonometry, statistics, and AP English.

But I really thought by the time she was 10, I could be reading Anne of Green Gables with her. I’ve been looking forward to that for a long time. And she’s just nowhere near that.

So when special needs parents share those moments that seem so small, so ordinary, it’s not just because we want people to understand that our kids can do the same things other kids can do, even if it’s harder or takes longer to get there. It’s also because we have this whole deep ocean of repeated failure that we don’t share. In part that is because we don’t want to be the whiners nobody listens to. But it’s also because we feel a huge, huge responsibility not to scare people off welcoming kids with disabilities into their worlds.

It’s an impossible juggling act, and one we navigate every single day of our lives. Just some days, we are better at it than others.

The Reason That Dream Was So Scary

Photo by anjan58, via Flickr

I’ll blame it on watching “Logan” late at night. I had this vivid dream in which we were at my parents’ church and in the middle of the Gospel, I realized Julianna’s bus was due to drop her off at home in five minutes. Only my parents’ church is 35 minutes away, and by the time we got home, we had no idea where she was. Then Christian got a phone call from the bus company saying she was in X subdivision and we had to get there in the next two minutes, and he was trying to tell me where it was so I could go find her.

I spent a couple of half-awake minutes trying to problem-solve it before I realized it was a dream and woke myself up all the way. It was 4:30 a.m. and I was afraid to go back to sleep.

This was the first time in a very long time that I’ve felt a desire to wake my husband and seek comfort after a nightmare. Usually I can dismiss the emotional response the moment I wake up because the situation is so ridiculous.

The problem with this one was, it could actually happen.

For seven years, I’ve structured my life around meeting Julianna when she gets home on the bus. For six of them it wasn’t optional: the sped busses will not drop off a child without a responsible adult on hand. They make two attempts to deliver a child and then they take them to the police station. This is laid out up front in the paperwork.

But sped busses are expensive, and a year ago, the school asked us if we were ready to let Julianna ride the reg-ed bus, with an accommodation written into her IEP that she would still get door to door service.

It’s the walk to and from the bus stop at the end of our street that had been my hangup this whole time; otherwise, I really wanted her included in this way as she is in the classroom. So we did it, and it’s been a positive experience, but no longer is there a requirement that the drivers deliver the child into the hands of a responsible adult. At least, I don’t think so.

So for the past year, I’ve made sure I’m there when Julianna comes home.

Until this summer, when all three of the younger kids rode together, and for that reason, I didn’t have to, because she was in company with brothers who would be sure she’d get inside.

Come August, she’ll be riding solo again. And this morning, lying awake with anxiety pouring through my veins, I realized how lucky I’ve gotten that nothing has ever unexpectedly prevented me from meeting the bus—car accident, appointment running late, last minute emergency with another kid—my author’s brain is concocting all kinds of zero-fault premises.

The thing is, Julianna cannot get into the house, and I have no idea what she might do if she found herself locked out.

But giving her a key would be useless, because our door has one of those push-in-and-turn locks that even adults can’t get open. Our next door neighbor couldn’t get in to water the tree for us one Christmas; I’ve lived here ten years and I still haven’t figured out the trick. I just wiggle and wiggle until I hit the magic combination. And the garage door code, aside from being far over her head, is not well made. You have to push the buttons so hard, she would never make it work, even if she could remember the combination. Or we could get her a garage door opener, but what if the power is out the one day I get caught away from home?

“I want to replace the front door lock,” I told Christian the instant he woke up this morning.

He said, “Just do the deadbolt and not the regular lock, and then she can use a key. The deadbolt works fine.”

I said, “Look, if I know I’m going to be gone I can do that. But if I know I’m going to be gone, I can call the neighbors to meet her. The problem is going to come when something prevents me from getting home on time. And I always lock that door.”

So—a new lock, and a key. But the truth is, I’m terrified of handing Julianna a key and saying “if I’m not here, let yourself into the house.” This is the girl who forgets (or chooses not to remember) that I told her to put away her shoes AND her dirty underwear. Who, when she does remember, is just as likely to deal with dirty underwear by sticking it back in the drawer as she is to put it in the laundry basket.

The girl for whom I never know how much she actually doesn’t understand, and how much she’s CHOOSING not to understand. I’m not even sure she knows the difference. She’s a mystery to me.

The girl who, after being shown the pulled weeds lying on the ground to put in the wheelbarrow, instead pulled up my lantana.

That dream, seemingly innocuous as nightmares go, is a reminder to me that parenting Julianna will always be fundamentally different from parenting my other children. And that is why it was so scary.

Photo by evereverse, via Flickr

The trials and tribulations of Kate, mother

Don’t let those innocent faces fool you. I’m on to them.

In the past week, a couple things have happened in my world.

First, we learned that our 5 1/2-year-old needs a nap after school. Luckily, it only took us two days to realize what was going on. Unluckily, we haven’t figured out how to make it really work yet, so sometimes it happens, and sometimes…it doesn’t.

Second, I’d had it up to HERE (envision the hand at the hairline) with being ignored. For example: that blasted black sock was STILL sitting on the living room floor THREE DAYS and FIVE REMINDERS after first being pointed out/instructed to put it away.

I was not happy. Not happy at all.

Saturday morning, I cornered the kids in the van, where they were all seatbelted in and couldn’t get away, and I announced (calmly) (mostly) a change in procedures in our house. From now on, I will give an instruction one time. If I have to give it again, the consequence will be an extra chore. Two reminders = two extra chores. Three strikes and you’ve lost your screen time for the day.

That was 9:30 a.m. By lunchtime, Michael had lost his screen time.

On Sunday, Nicholas made it to two strikes. Even though we had a conversation about it while he was doing the job I’d given him.

(What kind of conversation, you say? I’m so glad you asked. Here’s a strong-willed child insight: “So,” he says, as he’s sllllooooowwwwwwllly doing what I told him and getting his a) loose change, b) wallet, c) ear buds, d) book off the table so I can set for dinner. “So…do we get three strikes every day? Or do they just add up till we hit three?” Would you like to know where I found all that stuff? On the stairs. Still not put away. Envision me pounding my head against the nearest hard surface.)

But wait! There’s more! Sign up today and for absolutely free (oh wait, this isn’t an infomercial? my bad) you’ll get Miss Julianna on Sunday afternoon, trying to sneak extra iPad time by closing the door to the boys’ room so I wouldn’t hear it talking to her.

And that night, in what is becoming almost a nightly pattern, we came upstairs to go to bed and found Nicholas and Michael having a sleepover on their floor.

As my husband is known to say, when told of his children’s latest and greatest exploits:

“Awesome.”

Fragility and Indestructibility

This is a post about this boy…

…who yesterday, while I was running siblings to various lessons, punched (yes, I did say punched) the light switch in the kitchen, with this result:

But at three this morning, the cries started up in his room. I hauled myself out of bed and across the hallway to find out what was the matter, expecting a bad dream, but the choking cough alerted me that it was something more serious. My five-year-old has croup. The seal-bark cough, the stridor breathing, the absolute panic of not being able to draw breath.

As I gathered him up into my arms, it struck me how still, his little boy body fits so perfectly against me, like puzzle pieces. He’s all arms and legs now, shooting outward, just waiting for the weight gain to fill them out. But he still likes to snuggle with me—on top of me, although now when his head rests on my chest, his toes dangle past my knees. It’s about the only time of day you can get him to be still, that snuggle time.

He was wailing, panicking, and I thought of the many times we went through this with Julianna, and I felt a deep gratitude, there in the wee hours of the night, that I had those experiences, because I know not to panic. “Michael, I need you to calm down,” I said, holding him close against me. “Crying makes your body need more oxygen. You need to calm down. I’ve got you. As soon as you calm down, I’ll explain what’s happening to you.”

And he did. It took a minute, but he settled down against me, and I was able to convince him he wasn’t dying and he didn’t need to panic. It was a bit surreal, having a child with croup who was old enough to have a rational conversation about it. Even more surreal when you consider that this is the child who rips off drawer faces and considers tackles an acceptable form of greeting.

It seemed rather useless to put on the vaporizer, considering the windows are open and the humidity is already high, but I got some Vicks (well, Target generic) and smeared it all over his chest and back, and set up all his big stuffed animals with his pillow in front of them, and propped him up against it, then tucked him back in.

“What’s ‘oxygen’?” he asked sleepily.

You’ve got to love science lessons at three a.m.

After I explained oxygen and carbon dioxide, I kissed him goodnight and promised him we’d go see the doctor in the morning.

And although his breathing was still raspy, he shot upward and wrapped those long, lean, yet still so very baby-skin arms around my neck and kissed my cheek. “I love you,” he said.

These are the moments motherhood is made of.

An Unexpected Aldi Hack (i.e.: Friday Funnies)

I stumbled across a wondrous thing yesterday: how to get through the grocery store in record time. I’m sure it’s going to be universally useful to every person who reads from the fount of world-changing information known as Kate’s Blog.

How To Get Through Aldi In Eighteen Minutes

That’s me in the center, on a mission. And three of my minions. The fourth one took the picture. (Real Photo credit: kennymatic, via Flickr.)

Step 1: Invite over two extra elementary school-aged boys.

Step 2: Promise them the XBox…AFTER you get done at Aldi.

Step 3: Prepare for anarchy. When they grab the list from your hand, just roll with it. When they shout, “What can I get next?” yell something. Anything. When the youngest cries because everyone else is faster than he is…ignore it.

Step 4: Let them run all over the store, collecting items. Don’t try to keep track of them. They’re like boomerangs. They always come back. The kids, that is. By all means, keep track of the list! That is, after all, the point of the visit.

Step 5: Let them find you a grocery lane. Because they can’t be any worse than you at picking the shortest line, right?

Step 6: When they go hide under the far checkout lane to do surveillance…just pretend they belong to someone else.

“Who ARE those poorly-behaved little boys?” Photo credit: ~~ALDI security~~ valiant aja, via Flickr.

Step 7: Let them all pack a grocery bag, and forget worrying about what goes in it. Except for the lettuce bags. Those are sacrosanct.

Step 8: Leave Aldi 18 minutes after arriving.

There, you see? I told you it was universally useful. You’re welcome.

Happy Memorial Day!

In Which A Recovering Social Loser Processes Her Kids’ Social Status (or lack thereof)

Photo by Laura Barberis, via Flickr

Elementary school and junior high were no picnic.

I had my first breakup in the fifth grade, and it wasn’t even a romantic relationship. My best friend…okay, let’s be honest, my only friend…came over while I was sharpening my pencil by the coat rack and said, “I think we should be friends with other people.”

She used those exact words. I was too young and dumb to realize that actually meant I don’t want to be friends with you anymore.

For a year, I didn’t have any friends at all.

I was always picked last.

I never got the jokes. (Full disclosure? Sometimes I still don’t.)

I was only invited to birthday sleepovers because it was a Catholic school rule that everyone had to be invited. And people made fun of me when I was out of the room. I heard them.

High school was a fresh start for me, and three of the four years were basically good. Sophomore year was terrible, start to finish. But even during the good years, when people said, “These are the best years of your life,” I shook my head inside and chose to believe they were just being idiotic adults.

Most of the time, adults knew what they were talking about, but in this case, I’m happy to say, the teenager knew more than they did. Thank God. In college I finally found my people—the classical music crowd—but it took full-on adulthood to reach a point where I feel like I am happy with who I am and I exist in a community of people who understand me.

Frankly, I think it has a lot to do with being happily married. A child’s emotional stability, that sense of belonging, gets rocked by the onset of adolescence, and you spend the next ten to twenty years trying to find a new place where “home” means the safety you knew as a young child. Just sitting here thinking about it, I grieve for the children who never know that sense at all, and for the adults who never found it again. And, frankly, for the list of people for whom high school was the best time in their lives. Shudder. Imagine if life never got any better than that.

Why this traipse through the ghosts of angsts long past? Because now I get to experience it in a whole new way. More than one of my children is currently experiencing some variation of the not-good-enough that defined my later childhood, adolescence, and young adulthood. Probably it defines those parts of everybody’s lives, but in adolescence, those of us who inhabit the bottom of the social totem pole—not good at sports, not cool, viewing primping as a waste of good superhero-drawing/reading/writing/music practice time—feel that our faces are rubbed in our inadequacies quite frequently. Who knows? Maybe it’s harder to navigate those insecurities at the stratospheric end of the totem pole, because you are trying to keep up appearances when you feel like a fraud. Maybe I should be grateful for the spiritual/emotional/intellectual honesty of having had nothing to prove—both for myself and my children.

But it’s hard to see your kids suffer. As much as I value being outside the mainstream on, well, let’s face it, just about everything, I know how it hurts to be looked at like you’re somehow less valuable for it.

What I am grateful for is the fact that so far my kids want to talk to me about it. Because I’ve thought long and hard on these questions over the years, and for that reason I don’t fall back on the useless and maddening platitudes that adults used when I was a kid. Because we can use the experience as an ongoing opportunity for lessons in mercy, in recognizing how every situation is more complex than it feels, and in keeping the focus on Jesus.

And mostly, because it lets me love my kids really hard.

Kathleen M. Basi

Author/Composer

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