Disability and Friendship

So here’s a thing you might not consider about having a kid with a disability:

It is REALLY HARD to make friends.

Think about it. How do little kids make friends?

Photo by Pixabay on Pexels.com

STEP ONE: They find kids at school with like interests and personalities. They come home and tell you about it.

STEP TWO:
A) If you’re at Catholic school, you probably have a family directory and you can go look them up and reach out to the parents, and voila! Playdates can happen.

B) If you’re in a public school without a directory (I’m told it would have to be the PTAs that undertook that task, because no one on staff has time), your kid writes your phone number on a piece of paper that his or her friend takes home to his mom. The kids pester their parents until the parents make contact. Voila! Playdates can happen.

Now imagine your kid doesn’t do “conceptual.” She’s got a heck of a gift for empathy and emotional intelligence, but she’s missing the neural connections that make some of the most obvious social norms, well, obvious. In other words, it doesn’t occur to her to give her phone number to a friend, nor to ask for that friend’s number.

Also, for seven years she’s told you pretty much nothing about school besides “we had a fire drill,” even when they didn’t, and “we’re having a fire drill,” when they aren’t. You don’t actually know the names of her classmates, because along about second grade she stopped getting birthday invitations, and you don’t know the parents because you’re spread too thin with four kids in three schools and you really don’t know very many people at any of the schools.

Now imagine that your daughter, who is turning thirteen in ten days, has achieved her “adaptive skills” goals already and the IEP team calls you in to set some new ones. Yay!

“Oh, by the way,” they say, three quarters of an hour into the meeting, “you should know she’s inviting everyone in the school to her birthday party.”

This is the point at which you and your husband look at each other and say, “Uh…”

Because she hasn’t said anything to you about a party. And she sure hasn’t told you the name of a single person she wants to invite—aside from the trio of girls with Down syndrome that you managed, by the grace of God and a dash of sheer dumb luck, to cross paths with over the years.

This is the moment where two things happen simultaneously: a great, glorious, internal fist pump that all the battles you’ve undertaken on behalf of inclusion have paid off, and she has friends at school.

And, in equal measure, a gut-hollowing doubt that those friends actually consider her their friend. Because if they really did, why haven’t there been any overtures from them?

Then comes the moment where the teachers realize you don’t even know she has friends at school, and the magnitude of the barrier becomes clear.

Photo by Pedro Sandrini on Pexels.com

Because privacy regulations are so tight in health and education that they can’t even tell you the first names of these friends she’s invited to her nonexistent birthday party. How can you facilitate a birthday party when you don’t even know who to invite?

Over a 4-day weekend, the team consults (because they’re awesome that way) and comes up with a list of the kids your kid has invited. They can’t give it to you, but they can tell you how many invitations to send to school, and they can hand them out. Then you just have to hope someone responds, thus proving that your kid actually is viewed, in that mysterious world known as middle school, as someone worth being friends with.

So there you have it: today’s lesson in “things you never thought about when considering disability.”

IEP Day

IEP

This is what #IEP prep looks like: notes from parent advocate, part A and B. The first draft of the IEP, from which the comments came, split in two: the half we got through last week, and the part we have to do today—the goals, i.e the basic shape of her middle school experience. Finally, draft 2, which we will finish marking up today.

This is our 10th IEP meeting. Our first happened in preparation for her entry into ECSE (Early Childhood Special Ed) shortly before she turned 3. This is the first time we’ve hired a parent advocate, having realized over the past year that we have, in fact, been delusional the past 9 year in thinking we had a good enough handle on the process that we could do it on our own. And I have to say, I’m so much more relaxed this time than I have been in the past because there is an expert in the room who’s there just for us.

Even so, this is inherently a stressful process. What you can’t see from the picture is that each of those drafts is 20+ pages long. It’s a mind-boggling amount of information, written in lingo like this:

“Julianna will use clear speech (over-articulation) strategies at the sentence-level in 80% of opportunities. Baseline: 60% in structured speech activities at the word-level, with visual cue only (e.g., written minimal pairs).”

Did you all follow that?

My guess is that most people who have never been through an IEP were like me, completely unaware of the complexity of the process. Even now, I can sense eye rolls. Why the lingo? Why does it have to be so complicated?

Well, to effectively administer something like special ed, you have to have specific, measurable targets. And as targets zero in, you end up with specific language to make clear the distinctions. Ergo, lingo. Let’s face it. Who but a speech therapist would ever think of the fact that you can struggle to say “f” and “v” in three different places in a word–beginning, middle, end? Until it happens to you or your kid. (Oh, but that’s a different goal. I spared you that one!)

The process is what it has to be–but it is hard for parents. Hard to keep it all straight. Hard to understand. Hard to gauge the right level for pushing the envelope yet not overreaching.

What the IEP process doesn’t do, we realized, is create the specific shape of her days. Last spring, we spent 3 hours in an IEP meeting creating what we felt was a good plan, with 61% of her time spent in reg-ed. But in the fall, we found out those reg-ed minutes were so splintered, they were all but irrelevant. We had to have another hour and a half meeting to rearrange the schedule so that she could actually spend meaningful blocks of time with her peers.

It worked. She now has a group of typically-developing girls that she pals around with during the day. But the IEP didn’t guarantee that.

As always, posts like these run the risk of making special needs look like all stress and drudgery–and scaring off parents confronted with a diagnosis. But I really want the general population to get an idea of what supports are needed, because disability is kind off the radar for the vast majority of people, and even for those who do have it on their radar, it’s easy to underestimate the experience and think, “Why are you people making such a big deal of these public policy questions?”

We’re making a big deal of it because from inside the situation, the stakes are so high.

Testing (or: when a morale-booster ends up being demoralizing)

This past week, we got the results of Julianna’s “re-eval.”

Now, for those of you who are not immersed in the world of special education, part of the process is that every three years a child must be re-evaluated to make sure they still qualify for special ed. There’s a whole battery of tests, and I guess the team has some leeway in which ones they think they need and will actually be useful.

Julianna just went through this process, and I’m blogging about it because this is the first time I ever understood the antipathy among special needs parents to the whole concept of IQ testing. (Check out this link–the first one to come up–to realize how people thought of those with low IQs when this first became a thing.)

Truthfully, I was kind of curious. Julianna was tested when she went into kindergarten, and at that time we were told that in the first couple years of elementary school the number can shift. I don’t remember exactly what her first IQ was—I think it was middle/high 60s.

Three years later, they didn’t retest her IQ. I was slightly unhappy about that, because I was sure it would go up and let’s be honest, I wanted that morale booster.

Well, this time they did the IQ testing. In fact, they led with those results when we met last week.

40s, people. She tested in the 40s.

They were quick to say they didn’t think this was representative of her actual intelligence. They had to pull her from class to take the tests—all of them. And she was not happy about that. Not happy at all. She loves school. There’s not one single thing she doesn’t like about school. So the entire time she was being tested, she was grouchy and focused on getting back to class, where she belonged.

But they kept going around the table, and every one of those global numbers came out in the 40s. It was all the same caveats:

“She showed she understood the question, but the instructions said to use the cue word, and she didn’t use it. She used other words instead. So she got counted off for that.”

Or:

“Some of these areas she scored really high on—in the 70s or 80s—but the comprehension is her problem.”

Or:

“She was really focused more on what we were doing after the test was done rather than the questions.”

You get the idea. And I found myself stopping the meeting to say, “Hang on. If these tests are not indicative of what she’s actually capable of, why are we doing them?”

They hastened to add that they chose some more…descriptive (I think that’s the word they used) tests that they felt would showcase her strengths, to supplement the standardized tests. So that’s good.

But for me, this has put the whole question of standardized testing in a new light, which is why I’m sharing. Too many of us just take many of these things for granted.

I totally get that standardized tests are standardized for a reason. Everybody gets the same instructions. Nobody gets clarifications. Nobody gets alternative instructions. That’s the only scientific way to say everybody got exactly the same opportunity. My whole life, people have complained, “Standardized tests don’t test knowledge. They test how well you take tests.” I always thought that was hogwash, but then, I’m a darned good test taker.

Now, I understand.

And here’s the thing: for most of us, those standardized tests are really not that important. But Julianna’s going into the 5th grade. In the next twelve months, the entire shape of her middle school experience will be decided. The whole purpose of this battery of tests was to help direct that process.

So now what? Will she be walled off in a self-contained classroom where her focus will be “essential skills”, and no longer be able to interact with her typically-developing peers for any academic work whatsoever? How much inclusion is possible? How much can we fight for?

It would be very easy to use that 40-something IQ and related test results, and put her out of sight-out of mind for the rest of her educational experience. And she would be poorer for that. Even more importantly, her peers would be poorer for it.

Now, for the first time, I understand why all those parents said, “Don’t ever, ever, ever, EVER let them do an IQ test on your kid!”

I said to our IEP team: “We have always had a really good experience, we’ve never felt like the relationship with the school was combative, we’ve always felt like we were on the same page. I need you guys to stand with us as we go forward in this process. The reality is, Julianna is never going to be a high academic achiever. Sticking her behind a wall isn’t going to change that. She won’t accomplish any more there than she would outside it. What she’s good at is people. She needs to be around people, and they need to be around her. I need you guys to help us discern what is the appropriate level of inclusion, and I need you guys to advocate for us.”

So that’s where we are. We have a true IEP meeting in a few weeks. I’ll update after that.

Mad Lib Theology

Today, I visit my blog to talk about this girl:

Julianna ladybug

Wednesday nights, Julianna goes to “church school” (because it’s easier for little kids to say than “religious ed”) while we’re having choir practice. Usually, in the chaos of grabbing boys from the nursery, cleaning up octavos and books, and getting an overtired family of six out to the van 45 minutes past bedtime, we don’t even catch a glimpse of whatever work she did at school.

So this week, when we gave the choir a week off after Easter, I took Julianna to church school by herself, and in fact I did get a good look at the work she did. Are you ready for this?

1. I am the Lord your 9: you shall be have mom gods before me. 2. You do not take the chalice of the Lord your God in mercy. 3. Bread to keep three the great Day.

Once I got done giggling–I mean, it’s like a mad lib!–I realized I was staring at concrete proof of something I already knew: she’s really never going to “get it” from a class. Religious formation is one of the most conceptual things a child can possibly be asked to learn, and Julianna does not do “conceptual.” There’s value in having her in religious ed classes because going week after week teaches her that the faith is central to life. And she’s obviously picked up a couple of key words. 🙂

But with that paper in mind, the lesson I learned on Holy Saturday really gelled. We had gotten Julianna tickets to Disney on Ice at an 11 a.m. show in Kansas City. It was a two-hour drive, and we spent the time listening to the compilation of downloaded Christian music I made her for Christmas a couple years ago. (All legally purchased!) I chose these songs with the idea of having simple, hooky music that still had substantive messages, in order to teach her lessons about the faith. Because music is what Julianna does.

It was an incredibly uplifting drive, singing this music, with Julianna in the back seat decked out in her Miraculous Ladybug getup and dancing. She sang every word, and she danced as best she could while buckled into a seatbelt.

(That girl has jazz hands down.)

And I had this moment of inspiration: to take the essential Scriptures and write simple but hooky songs for kids like her–theologically sound, hopefully theologically dense–but still, simple? Methinks such a thing would be of use to a whole lot wider demographic than musically-gifted 11-year-olds with Down syndrome.

Which also brings up the question I want to ask of anyone reading today:

What songs already out there fit this bill for you?

In case you’re wondering, here’s the playlist we sang on Saturday.

Fun With IEPs

This weekend at the Step Up For Down Syndrome walk in Kansas City, with a friend we don’t see too often because of distance (and busy-ness!)

Fun fact: I spent 2 1/2 years as a music ed major before deciding all I really wanted to do was play my flute, and I universally hated every one of my education classes. The class that broke me and caused me to switch? Special Education For Non-Special Educators.

It took me until Julianna was in the 2nd grade to realize that class, as much as I hated it, had given me an exceptional orientation to what I was now going through—that I didn’t have stress and confusion on the process, because I’d studied it in the abstract.

The irony is not lost on me.

The portion of Julianna’s educational paperwork we have actually kept over the years. This is probably about half of it. We print on the back sides of a lot of the rest.

We had Julianna’s IEP meeting on Friday. The process begins with a summary of “present level,” which comes home in advance. I’ll be honest: usually I don’t really read it very carefully. This time, however, we were coming in with some strong opinions and so I took the time to really process those four pages of dense “special-ed-ese.” But I couldn’t help laughing at this paragraph:

Ah yes, my daughter is 4 for 4 when it’s about food. That’s about right. Chocolate, vanilla, and rainbow. Furniture. Yup.

And this one:

“an answer that is unrelated to the passage and of high interest to her, for example, Star Spangled Banner, swimming, and choir!” Oh yes, these people DEFINITELY know my daughter!

The great and ever-ambiguous “They” say you should never go to an IEP meeting alone, that you should always have someone in your corner, someone outside the family who knows you and what you want for your child. I’ve never done that, because I’ve always felt like we’re all on the same team. This time, though, Christian and I set aside the time to attend together, which isn’t normally the case. I sent an email ahead saying, “Listen, we have a lot to talk about, so can we just skim over that part where you tell me my daughter is kind and loving and enthusiastic and gets along with everyone? 🙂 ”

There was a person there this year from district administration, which was new, but I decided it probably wasn’t worth asking why when we were already pressed for time. There’s the part of the meeting where they address parents’ concerns, and I was like, “Oh, hang on, you don’t have nearly all our concerns yet.” 🙂 We had to talk about the looming onset of puberty. The fact that her STAR reading scores were completely flat the entire last school year, and that because it wasn’t in the plan, they weren’t allowed to spend time working on reading comprehension during summer school. The fact that she’s getting to the age where she notices her brothers have play dates and friends over, and she doesn’t get invited to parties or for play dates even though the kids are really good with her at school and everybody loves her, and the fact that she’s virtually incapable of having a truly interactive conversation with her peers that would facilitate those friendships.

It was a longer meeting than usual, and all our history as parents rode piggyback on the moment when, late in the meeting, Julianna’s sped coordinator said, “Now, I don’t want you to freak out when you see the minutes…” I had to chuckle: they knew us well, with our adamant and repeated insistence over the years that she be included in the regular classroom AS MUCH AS POSSIBLE for AS LONG AS POSSIBLE. They removed some physical therapy minutes for the coming year, but the addition of a whole lot of reading comprehension minutes means that her time in the regular classroom is dropping from over 70% to just about 60%.

And when the meeting ended—after an hour and a half—and the teachers hurried to get back to their neglected classes, the district representative finally explained her presence. She’s the one in charge of determining placement for kids when they enter middle school. As in, which school and what kind of classroom (i.e. self-contained).

Friday was the first time we had to face the reality not only that she might be less included in the near future, but that in the middle-future she might not be able to be included at all.

It’s a bittersweet moment, but we knew it couldn’t last forever. Her classmates are doing multiplication, and she’s still doing subtraction under 10 (and not well). Her classmates can answer questions like, “Why do you think Character A did Action B?” while she’s still struggling to answer, “WHAT did Character A do?” The gap is widening. When kids start splitting into advanced math and regular math and remedial math, how can you expect inclusion for your kid who’s still doing primary math?

It’s beyond my comprehension, this whole issue of how her mind works. I picked her up early last week in order to facilitate the afternoon madness, and so she was with me for pickup at the Catholic school. She’s only been through that pickup line a handful of times, because she gets out later than they do so she only comes if she’s sick or they’re off school. And yet she kept insisting things like, “THAT is where Nicholas is,” and “I___, you are coming with US!” (Insistently enough, I might add, that not only I___ but his teachers asked me whether it was true, rather than going on the basis of what they know! Ha!) Everything she said was true…last year. It boggles my mind that her spatial sense is so strong when so many other things aren’t just difficult, but simply don’t exist.

Random funny picture of sleeping kids on the way home from the step-up walk yesterday. Yes, we’re missing one. He had Cub Scouts.

Well, I’m reaching epic proportions and I haven’t had breakfast yet, so I will leave off there for today and hope that this glimpse of special needs life is illuminating.

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 Charm and Challenge of Raising Julianna

In bullet points, in no particular order:

Every time we introduce Julianna to a new teacher, be that classroom or for swim lessons, we have to begin with these words: “She likes to pretend she’s more helpless than she is. You have to be firm with her.”

The truth is, she manipulates without even realizing she’s doing it. She recognizes people’s (read that: authority figures’) weaknesses and exploits them without even knowing it. This is the reason for the above.

She doesn’t have friends. Everyone knows her and everyone likes her, and everybody’s excited to see her when we run into them in public–but nobody invites her over (or to birthday parties), and our attempts to reach out have been unsuccessful. I think this bothers us more than it bothers her, but I don’t know for how much longer that will be true.

She will go anywhere for any length of time if there’s a baby there.

Babies love her. Little kids are 50-50. Older kids are gentle with her. Adults absolutely adore her. But kids her own age…it takes a special kid to be willing to hang with her. This is not so much true at school, where they’re all very good with her, but again, she doesn’t get invited to anybody’s house.

Her reading assessments this year were completely flat. As in, she didn’t advance in reading level one single point. She can read the words out of a middle grade novel, but the assessment diagnostic recommends she be given preschool-level materials in order to comprehend. Basically this means she reads a lot of “5-minute stories” type of books.

It is hard work to talk to her. You have to be all in mentally, because she’s really hard to understand. This is probably one reason why she keeps telling you the same things over and over for years. Her pet topics are fire drills, horseback, the iPad, Sofia the First, Elsa blasting Anna’s heart, thunderstorms, and how long until the pool opens.

She doesn’t remember (or at least, she shows no evidence of remembering) anything you tell her about disruptions to the usual schedule. For example, we had the same conversation about how we canceled choir practice this week twice on Sunday, twice on Monday, and once today (and counting). She just keeps saying, “But we have choir practice on Wednesday!”

She’s incredibly spatially oriented. Whether it’s landmarks or what, I don’t know, but if we’re headed to one area of town she’ll list one or more other places we routinely (or used to routinely, or sometimes never went routinely at all) went that are in the same area.

She cannot stay angry. She’s actually, truly incapable of it.

She has my hair: so thick, it’s like two or three people’s hair on one head.

She does not have my hair: her hair is straight instead of curly, and exceptionally fine. It will.not.stay in ANY clip, rubber band, or headband I’ve ever tried. Hence:

It ain’t because I don’t try, folks. That hair just won’t stay in ANYTHING.

I’ve said for years that toilet training happens when parents decide to prioritize it; it usually has little to nothing to do with “readiness,” except parental readiness. I’ve been thinking about this lately because Julianna can’t brush her hair, make her bed, brush her teeth, or do self-care by herself. Or more accurately, she can, but she will do a half-@$$ job at it. I’ve been recognizing that what I say about toilet training also applies in this situation: I have not decided it’s important enough to move to the top of my priority list.

She thinks she’s sooooo funny. (This is a trait that runs in the Basi family. In case you were curious.)

She will walk up to a retired thoroughbred racehorse and hug its neck, but if she sees a dog, no matter what size, she screams and runs away. And she gets extremely put out because the rest of the world does not have the memo that she does not like dogs. Or at least, because they’ve chosen to bring dogs into her general vicinity of the world, i.e. her town.

She can watch a movie once and recite almost the entire thing the next time.

She is a food scavenger. Whenever she clears the table, she tries to scrape up and eat the leftover broccoli or sauce left on the plates.

The flip side is that she’s also pretty easy to manipulate. “Can I have a kiss?” I will ask, and she will say, “NO!” But if I give her puppy dog eyes, she will giggle and say, “Oh, all right, I kiss you!”

And then there’s this, taken from within the choir by one of our sopranos last Sunday:

Michael Mayhem Graduates Preschool

Michael, with his toy guitar: “This next song is called “Starlight Can Never Destroy A Death Star So I will Use My Laser.”

I went to his end-of-year celebration at his preschool yesterday, which consisted mostly of him attacking me at frequent intervals with flying leaps and fierce hugs interspersed with little girls coming around to take pictures with him.

It floors me to see how advanced academically he is. He is actually writing messages to us–all caps, no lower case, and asking us how to spell words–but writing nonetheless. Julianna does this app on the iPad for homework. It’s called ST Math. It’s graphic math, with no instructions of any kind, which has on more than one occasion made my head want to explode, but apparently the kids do pretty well with it. She’s doing the first grade curriculum and as we were trying to show her grandparents how this worked on Mother’s Day, Michael watched upside down and then started doing it for her. I had to get pretty firm with him to back off.

In part, it floors me because he’s in a special ed preschool, one where the primary focus of the instruction is the kids with developmental disabilities. We enrolled him as a “peer model” through the school district when he was three to try to develop sensitivity and awareness toward kids with disabilities–because of all our children, only Alex, who witnessed and participated in her early childhood therapies, really has an inherent awareness of and appropriate interaction with her. To her younger brothers, she’s just their sister. They don’t tolerate her desire for hugs, and their power struggles over the iPad and books and so on look like every other sibling struggle. They don’t give her one inch.

There’s great value in having that relationship–Julianna is always trying to get away with things based on her disability, whether she’s doing it consciously or instinctively–but I still wanted Michael to at least be capable of making a distinction.

When it came time to move him to a traditional preschool for his preK year, to make sure he got the needed academic preparation, we found ourselves waffling. He seemed comfortable, and the school was right here in the neighborhood. Often, we bike to and from. The kindergarten teachers at the Catholic school said, “Ah, don’t worry about it. He’ll be fine.” And so we left him in place for a second year.

His teachers at Early Childhood Special Ed have told me repeatedly how seriously he takes his job as peer model, but I always thought that was just teachers being nurturers; I didn’t take it that seriously until one day, Michael and I went out with my friend and her son, who is a couple years younger than Michael, after Jazzercise. The boys jumped around, climbing on and under things and generally being normal little boys while we talked and tried to keep their exuberance (and potential for damage) contained to one corner of the cafe. When it was time to go, Michael’s little friend did not want to go. It was like a switch flipped in Michael. His tone of voice gentled, he helped his friend put his coat on, he held his hand and led him out the door. My jaw hit the floor.

It will be interesting to see how the experience of being a peer model shapes his future character. In the meantime I highly recommend it for anyone looking for an inexpensive and extremely enriching option for preschool. Because clearly, it didn’t harm his academic potential at all.

In any case, such is the world of my littlest guy as the school year closes. I’m having so much fun with him.

My Alternative Spring Break

Study You know those trips organized by campus ministries every year, where college kids go to build houses in Appalachia or Central America? I never did one of those. I was way too timid (shocking, I know) and way too comfortable in my own ordinary. Those kinds of missed opportunities are the only real regrets I have about my life.

These days, Spring Break is usually a week I simultaneously try to a) pretend isn’t coming and b) plan to fill with activities so my kids don’t destroy 1) my house or 2) my sanity and their own before it’s over. This year was particularly worse than usual because A) my husband was out of town for the first 4 days of it and B) IT RAINED ALMOST THE ENTIRE FREAKING WEEK.

Whatcha gonna do? (as my grandmother-in-law used to say)

Of course, I didn’t know point B when I first heard that the University of Illinois was doing a study on how children with Down syndrome learn to communicate. I did, however, know that we had tickets to see The Illusionists in St. Louis at the end of the week, courtesy of Santa (wink-wink). I suggested to Christian that we could go to Champaign-Urbana and participate in the study and visit his brother and sister-in-law there and do some travel writing visits and the show in St. Louis on the way home.

Computer Screens

Thus it was that last Thursday afternoon, Julianna and I spent an extremely cool, rainy day in adjacent rooms on the U of I campus, doing our tiny part to aid the future of the Down syndrome community. They put me in a room next door, where I could watch on a computer monitor while I filled out six, yes, six, questionnaires about our family, Julianna, and communication. (The height of irony: the woman who complains about paperwork every single time volunteers to do a whole stack of it.)

They started out by asking Julianna to complete some tasks without any verbal cues at all—only by silent modeling. Then they moved on to patterns and recognition of facial expressions and all kinds of things. Some of it I missed, because I had my own tasks to complete once my paperwork was finished. I’m not entirely sure how this fits into the big picture—we can only assume they wanted to compare the abilities and strategies of typically-developing parents with those of their developmentally disabled children.

It was a visual test, mostly. They started out with visual analogies: a picture of one tree beside a picture of three trees. Then a picture of a single flower and a blank, and I had to point to the picture below that showed a bunch of flowers. I settled in for an enjoyable ride. Until they switched to patterns, and then my analytical brain kicked in, thinking, oooh, a nice spatial challenge.

But folks, those things got HARD. For a while, I tried to do all the thinking in my head, but it got to the point where I said, “Um, I’m sorry, but you’re going to have to let me talk this through.”

This was one of the last ones:

Puzzle

When I saw this, I admit, I whimpered a little in my heart and considered pointing to a random image, because saying “I have no idea” was not an acceptable answer. Eventually I narrowed it down to two and gave it my best guess. My brother-in-law, that night, paused in the act of scrubbing oysters and spent thirty seconds staring at the puzzle, talking through it, and pointed to the right answer. I went, Oh! Now I get it!

(Alex and I did each eat a raw oyster that night. In case you’re wondering. Another first.)

After the puzzles, I had to choose the image on the page that illustrated the word or phrase the examiner read to me. And then it was concept riddles, for example: something you see through, has a sill, and is put in a wall. Most of them were not much more difficult than that, but a couple of them tripped me up.

My brain was completely shot by the time we were done, but I had one more task: take a picture book without any words at all and read it to Julianna on camera.

I can only imagine Julianna’s was even more exhausted than I was, by the time it was over with, but it was a good experience. I’m looking forward to seeing what comes of it. They’ll be collecting data for several more months, so if there are any readers interested in giving this a try, here’s one more image to point you in the right direction:

Study details

Oh yes, incidentally–The Illusionists? FABULOUS. And the Fox Theatre in St. Louis? Wow. And not just because of the architecture. That was the most helpful, courteous theater staff I’ve ever encountered.

Kathleen M. Basi

Author/Composer

Disability