Disability and Friendship

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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?

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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.

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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.”

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

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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

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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?

Julianna theology

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.

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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.

 

On Losing A Child, Recognizing the Value of Friends, and the Humbling Realization That Everyone Really Does Know Who You Are

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unnamedIt’s almost too complicated a story to explain. A group of parents were meeting Friday after school, at the Starbucks inside Barnes & Noble, to discuss a topic of mutual concern while the kids perused the books and toys. When it was time to go, I sent Nicholas to get Julianna from the children’s area, where she was looking at books and trains. “She told me no,” he reported back.

“Well, go and tell her she doesn’t have a choice,” I said, and began packing up. But by the time I took my leave and headed toward the children’s area, I met Nicholas coming back, saying, “She’s gone!”

I knew what had happened. She’s like the boy in the Gospel story. She says “no” but then later (in this case, within a minute), regrets it (or in her case, cognition catches up) and sets out to comply. Only she didn’t know where I was, because when we’d entered the store, she’d gone straight to the children’s section.

I expected to find her in two minutes or less. We’d barely started when the mother of Julianna’s school friend, who works in the store, came up to me and said, “Hey, how you doing?”

“Well, we’re missing Julianna,” I said.

“You want me to call a Code Adam?” she asked.

I almost said, “No, she’s here somewhere.” But then I thought: We are due at Christian’s work party at six, we still have Giving Tree shopping to do, and I have a lasagna in the oven at home.

“Sure,” I said.

Three minutes was long enough for the Barnes & Noble staff to determine that Julianna was not in the store. I went out to the van on the odd chance that she’d gone looking for us there—not that she could have found it—and as I turned around to run back to the store, a complete stranger flagged me down. “I saw her,” she said. “She came to the door, but then she went back inside.”

Inside, I found three other mothers, eight kids, and Julianna’s friend’s mother waiting for me. The moment they saw I was alone, they started splitting up the various wings of the mall—and Ms. M. called mall security. I gave my super-secret cell # to the mom who volunteered to wait at B&N with Alex, and then I dragged Nicholas and Michael out into the mall.

We checked the carousel, the bathroom, and the costume jewelry store before we got to Kidz Court and found a security guard checking there too. I went on to JC Penney and then back to Shoe Department, checking with the people at the mall entrance to make sure she hadn’t come in. We were getting ready to head for Target—because Target is our usual Mall destination—when Alex and another security officer intercepted us. “I’m shadowing the mother,” he said into his walkie, and steered me toward Game Stop and Santa Claus.

I couldn’t think why on earth she would be in either of those places, but it was clear they had a whole lot more experience at finding lost children than I did, so I didn’t argue. “She’s probably just talking to people,” Alex said as we power-walked down the main corridor.

I nodded. This is the common knowledge in our family: the problem with Julianna is not that she gets lost. It’s that she doesn’t know it. “I think we’re about to find out how long it takes Julianna to figure out she’s lost,” I said.

As long as I was thinking and problem solving, I didn’t have mental power for doomsday thoughts. This was about the time I thought: Christian’s work party no Basis because the Basi family is at the police station waiting for—NO! Chill. She’s fine! We’ll find her soon. She’s here somewhere.

The security guard went to talk to Santa and I went on to the woman at the makeup counter at Dillard’s. The guard came up behind us and said to her, “Can you call your security chief and ask him to check his security cameras for her?”

Oh, I thought. What a good idea.

We were halfway back to the main intersection when the call came in: “We’ve got her. She’s at Target.”

That was about the time my dying emergency-only flip phone rang; the mom who had stayed at B&N was calling to let me know the same thing.

When Julianna arrived where we were waiting for her, it was with a huge smile and open arms and great big giggles: “MOMMY!”

Alex and I looked at each other and laughed and sighed and shook our heads. “She didn’t know she was lost,” we said.

My mother-compatriots and the three security personnel were all like, “Are you okay? Do you need a cup of coffee? A drink of water? Do you need to sit down?”

“No, I’m good, we just need to go get our Giving Tree shopping done,” I said, and then thought: They must think I’m a complete sociopath.

And maybe there is something wrong with me. But it was much scarier, losing her in Kansas City. This time, she wandered off in a place where she knows her way around. She’s unbelievably spatially smart, especially considering her other cognitive difficulties. I’m not afraid that she’ll wander off into the middle of nowhere, because she likes people. She gravitates toward people, and sooner or later where there are people, she’s going to get found.

I knew this to be true, but I did not know just how true.

The next morning, we were at Breakfast With Santa, put on for our Down Syndrome family network. I shared this story with another mother. “Oh,” she said. “You know, (fellow DS group member) sent me an email yesterday saying, ‘I’m here in Target and Joanna is here without her mom, do you have contact info’? But I was like, ‘who’s Joanna’?”

And the day after that—Sunday morning—I was walking to the copy room at church to make copies of the music list before Mass when the religious ed director said to me, “Oh, I just got two emails from (teacher’s aide in Julianna’s religious ed class). She said, ‘Julianna is at Target without her mom. Do you have contact info?’ But I don’t check my email on the weekends, so I just got the messages.’”

I live in a city of 120,000 people. Not gargantuan, but also not the kind of town where everyone knows everyone else. This is the only mall for miles around, and people shop here from countless tiny towns in at least three of the four directions. Especially in December.

It was eye-opening—awe-inspiring, even—to realize that even in these circumstances, there are people who know us and care about us. And to realize that at any moment of crisis, my friends—friends I hardly ever get to talk to, because life is life, you know—have my back.

Eye-opening, awe-inspiring and very, very humbling.

Fun With IEPs

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Step Up Walk

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.

 

 

paperwork

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:

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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:

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“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.

Sleeping Beauties

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

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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.

A “Special” Tea Party (Photo Friday)

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I know I said I wasn’t going to post, but some things simply must be shared. After months of attempts foiled by busy-ness, three of our local Down syndrome families with girls close to the same age managed to get together for a girls-only tea party this week, served by their sisters. How beautiful is this?

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Thanks so much to my special moms for allowing me to share these pictures!