Lazy Book Club: What I'm Sort of Skimming But Not Really Reading this Summer

Two books I am not reading are making me happy right now.

The first is Count Us In by Jason Kingsly and Mitchell Levitz.  It’s written by two young men with Down syndrome (they were in their late teens when the book was written, and there’s an updated epilogue written when they were in their early 30’s).

Why am I not reading it?  Well, because it’s pretty much what you would expect to find in the memoir of two teenage boys.  The young men were clearly thoughtful and funny and opinionated.  Their book was full of the same teenage self-confident certainty I might have had writing at that age.  But really?  All I was learning reading through this is that (duh) young men with Down syndrome have a lot of the same thoughts and questions and opinions as any other teenager.  (And might I confess that the average teenager writing about themselves is, um, kind of boring.)  So I skipped around and read bits here and there, until I finally gave up on reading the whole thing and took it back to the library.  I was happy to do so.  I like the idea that Max will grow into a young man who will one day bore me with his normal-ness.

The second book is called Positive Discipline for Children with Special Needs by Jane Nelsen.  Someday there’s a whole post, or a dozen, about my hopes and insecurities about raising and disciplining a kid with special needs.  About the worries that they won’t grow and mature on their own without constant (and often professional) guidance.  About the perception that only strong expectations and diligent discipline will goad Max into proper behavior.

This is the first book I’ve found that looks at special needs parenting from a perspective that I recognize.  The practical uses of the book are a few years off, but for now I am just happy to see that someone else has had the same questions.  And that one author, at least, has determined that disciplining to mold, to shape, to conquer, is no more necessary or useful in raising kids with special needs than it is for typically developing children.

That said, the main reason I stopped reading this book?  I remembered that my infant son isn’t in need of much guidance yet, but my 4 year old?  Oh, I could definitely use a pep talk on how to incorporate some positive parenting with him.  So this book is also on its way back to the library, waiting for the day when Max is old enough for it to be useful.  And I’m going to find the author’s first book, plain old Positive Discipline, and work on implementing some of its ideas with my older son.

These two books are reminding me that my family really isn’t all that different than I thought it would be.  It’s a reassuring thought.  And it’s blessedly boring to read about.

DS 101 - Language

Technically it’s called Trisomy 21, but the only place I’ve heard that term used was in the NICU.  Since then all our therapists, doctors and advocate friends have just called it Down syndrome.

Just Down, not Down’s (I didn’t know that either!).  Syndrome isn’t capitalized.  Unless it is at the beginning of a sentence.

The name comes from Dr. John Langdon Down who defined the syndrome in the mid 1800’s.  (It would be another 100 years before scientists figured out that Down syndrome was caused by an extra 21^st chromosome.)

Within the disability community there is a movement toward “people first” language.  This means that the names of conditions are used as descriptions only.  So a person with Down syndrome is not referred to as a Down syndrome, a Down, or a Down’s.  I think all of those just sound plain awkward, but I’ve heard them a few times.  The approved form is “with Down syndrome,” as in “babies with Down syndrome tend to have low muscle tone,” or “I have a son with Down syndrome.”  Until I’d read more about this preference, I used phrases like “Down’s babies,” so I’m not offended by that language.  But I figure I’ll take the advice of folks who have been advocating for their friends & family members longer than I, and I’ll try to make my language reflect their wishes.

I also see the abbreviations Ds and DS quite often.  If you don’t see those around this blog, well, that’s just because I don’t like to abbreviate much when I’m typing.

More generally, children have “developmental delays” and adults with special needs are said to have “developmental disabilities.”  The term “special needs” kind of drives me nuts (don’t we all have special needs?), but I also kind of like its gentle familiarity.  It does sound less clinical than “developmental delay.”

Friends and family who support the inclusion of their loved ones with Down syndrome in their lives and in their community are "advocates."  I've been seeing adults with Down syndrome (and other developmental disabilities) referred to as "self-advocates," and I like that term.

As for the “R” word, really?  Do we even have to have this discussion?  I’ve never used the word because it’s just never been a part of the vocabulary around me.  And now, when I do hear it, I am reminded of the day, not too long in the future, when I will have to explain the word, its history, and its use as an insult, to my son.  So I might understand when your 90 year old grandma uses it, but in all other cases it’s just not acceptable.

Actually, I have a friend in her 90’s, and I’m pretty sure she hasn’t used the word in 50 years.  So if she can’t use the clinical/historical/old-habit excuse, then you can’t either.

Five Months

To my little Max, on the summer solstice, the day you turn five months old:

In the last month we've watched you make the jump from a cuddly little lump of newborn into a happy, curious, playful baby.  You like sitting upright in our laps, with assistance of course, so that the world is right-side-up instead of lying down sideways.  You like having a toy in your hand that you can waive around and stuff in your mouth.  And you love sucking on your thumbs like crazy.

This month we’ve started reading, big time.  I know, you’re supposed to read to babies from the start—but it’s a bit harder to do that with the second kid.  You’ve been hanging around often when we read with Toby, but now we’re reading more just to you—Sandra Boynton’s farm animals, Olivier Dunrea’s goslings, P.D. Eastman’s dogs on the go.  It’s fun to revisit these old favorites.  We’ve started attending the library’s baby story time, too, and it’s so fun to take you to an activity that is just for you!

Jumping into summer has meant lots of places for you to go and lots of new people to meet.  Usually you’re pretty happy to be held by new people, you like to study their new faces and greet them with grins.  You smile at the other mamas on the sidelines of Toby's activities, and you  and you love the attention from your PT, Calie, and your speech therapist, Anita.  We've been on the go at the zoo, parks, the library, and the pool--and we've tried to spend more time outside than in during this mild month before the summer heat really gets going.

 

You had your first dip in a real pool this month, and you like it much more than your quick (cold!) dip in our hose-filled backyard baby pool.  You’re happiest sitting on a lap in the super shallow toddler area.  You’re intrigued by the water on your belly and hands, but you do not want to touch the rough pool floor.

You’re still trying to figure out the napping thing.  You’re not a sleepy newborn anymore, but you haven’t figured out how to take long naps during the day.  So it seems like we’re always either putting you to sleep or getting you up again.  It’s okay, you’re still little enough to carry around whether you’re awake or asleep, and you’ll figure out the joy of a long, refreshing nap soon enough.  I won’t brag about how well you’re sleeping at night, I wouldn’t want to jinx it.  I’ll just give you a big public “thanks” here, because mama loves her sleep, too.

Toby is interacting with you more and more—but he’s still impatient for you to get bigger so that I don’t have to tell him to be careful all the time!  He’s gotten good at repeating our motto for the summer when I ask him why he needs to be gentle with you:  “Because we’re trying to stay out of the hospital.”  You get fussy when he’s too loud or too close, but you do love watching him as he bounces around the room.  Toby likes to play “two babies” with you, where he’ll lay down on your blanket with you and act like a baby and play with your toys.  You two are pretty funny together, and you make an adorable pair.

You're our little Max, and we love you.  And we're so very happy for the five months you've been a part of our family.

A Comfortable Space

At La Leche League a few weeks ago the topic of starting solids came up.  There was talk of LLL’s recommended signs of readiness for starting solid foods—showing interest in food, sitting independently, beginning to use the pincer grasp.  Yes, yes, I’ve done this before, I’ve successfully ignored my pediatrician’s advice to start cereal at four months, and we’re still several months away from thinking about this.  And then it hits me—developmental delays means that Max might hit these milestones late, but he might be ready for the nutrition of solid foods before that time.  Hmm.  So I ask my question.

And then I’ve become that-mom again.  Suddenly the other questions about whether it’s better to start with bananas or avocados, or the worries that one kid will only eat peaches, or the stories about the mother-in-law who feeds the two month old mashed potatoes while mama isn’t looking—all of that stops.  Because everyone knows that those problems will all go away in a few weeks or months.  But Down syndrome will still be around.

The leader starts flipping through the index of her manual while other mamas are suddenly preoccupied with their babies.  I try to reassure folks.  No, really, I’m just thinking out loud.  I’ve got a few more months to figure this out, I’ve got trained therapists coming to the house who know the answers to these questions, we’ll figure it out.  I didn’t mean to make things uncomfortable, I don’t need your pity, I’m just doing what mamas do, thinking about what the next step is for my baby.

One of the reasons that I’m enjoying writing in this space is that I’m not sure where else to talk about some of this.  It seems like bringing up this new normal of research and therapists and appointments and milestones is a way to shut down a conversation.  So it all goes here, instead.  It’s mundane and repetitive, I don’t have any advice to share, I don’t have any delusions of starting the next must-read-mama-blog.  I've never been much of a journaler, writing to purge has never held my attention.  But I do like to write as if I'm having a conversation with someone, even an imaginary someone.  After I write things down as if I was speaking, then they stop swirling around in my head.

Or, if coffee isn't your thing, we could have a beer.

This is my little comfortable space, where I don't have to worry about speaking out of turn or drawing attention to myself.  It's a place where my friends can come to see a bit about what I'm thinking when they're not sure what to ask (although, for the record, asking is okay, too).  Therapy seems like a strong word.  I've done therapy--this is more like having coffee together with friends.  So thank you, to those who are reading and commenting and stopping by for more.  It is good to talk about my new-normal in a place where it's just plain-normal, and you are welcome to come by and be a part of this space anytime.

Two Against One

This past week Christer has been out of town for work.  For the first time, I've been home alone with two boys.  I've been outnumbered.  And, I don't want to speak too soon, but I think we're going to make it through!

I miss Christer.  That goes without saying.  But if I'm looking for the silver lining, it is fun to see how things change when our routine is upset.  For example, since we couldn't divide and conquer, I ended up throwing both boys in the tub together for a bath one night.  No, Max can't sit up yet.  No, I didn't really trust my 4 year old to keep the wet, wiggly baby's head above water.  But for 2.5 minutes they were both in the tub, and we managed to get enough water and soap onto Max to count him as clean.  Or last night, when Toby made dinner by himself.  That is to say, he spread sauce, pepperoni and cheese on a pre-made pizza crust.

More than once this week we've skipped dinner and just had a big bedtime snack.  We were good and only had ice cream for lunch once.

It's been fun to have a lot of time with my Toby.  Preschool is over for the summer, and summer activities haven't started up yet, so we are spending ALL our time together this week.  Lately the new baby has often been my priority, and I know I brush Toby off or lose my patience with him too often.  Being stuck together this week has been good for both of us.  He really is growing into a curious, thoughtful, helpful little boy.

It doesn't hurt that I've set the bar very low for the week.  So if I do manage to accomplish anything beyond feeding the boys and arriving on time to a few appointments, then I get to pat myself on the back.

And let's not forget the best perk of pulling off a week of solo-parenting--he owes me.  I'm looking forward to sleeping in on Saturday, and then packing up and heading off to my favorite Starbucks to write.

And then I'm looking forward to spending the rest of the day with my whole family back together again.

Early Intervention My Way

I've been thinking, after the last post, about how to make therapy fit into our parenting style.  How can we be low-key and child-led while working on the skills our therapists recommend?  Somehow writing these things down in a list makes me feel a little bit more like I'm still in control of parenting my own child.

• Limit the flashy toys.  Our PT brings bags full of bright, flashy, noisy toys.  There are buttons to push and lights and music.  I watch Max respond to these toys, and at first I was tempted to go out and buy a bunch of them.  I’m not a purist—we’ve got our share of noisy, plastic toys around here.  But I’m trying to convince myself that I am not doing him any damage by doing the same exercises with quieter toys.  Or heck, even with non-toys like wooden spoons, burp cloths, Toby’s squirmy nose, etc.  He responds a bit more slowly, but that’s okay because…

• Slow it down.  During an hour long PT session, Max works hard.  The therapist has him looking and grabbing and rolling and sitting and… whew, it’s a workout.  When we practice skills on our own, I try to move more slowly.  I give him a bit more space to try to do skills on his own before I support him.  I linger between exercises to let him enjoy what he's holding or watching, or to give me time to carry on conversations with other people.  I try to make it more about hanging out together and less about doing a set of exercises.

• Leave space for Max's reactions.  It’s always hard, as a parent, not to shower your kid with praise—clearly my children are most clever, adorable children ever, and they deserve praise!  But I want to leave some space for them to enjoy their accomplishments on their own.  I’ve also seen, especially with special needs kids, how praise can become condescending.  Max gets lots of excited praise from therapists and doctors.  When we’re doing things on our own I try to tone it down a bit.  There are still lots of smiles and cuddles, I want to make it fun.  But I want to get in the habit now of not using over-the-top external praise as a motivator.

• Know when life is better therapy than therapy.  Many times I sit down with Max ready to do some of his exercises, and I’m thwarted by something better coming along.  There’s no reason to practice sit ups when what he really wants to do is strain his neck up higher to watch Toby bouncing around.  If Max is already grabbing his blanket and stuffing it in his mouth there’s no need to dangle a flashing toy in front of his face.  Before I sat down to write, I was going to practice some rolling with Max.  But instead, he started doing his own little half-roll to try to reach a toy.  While I’m typing he’s rolling from his tummy to his side to grab the toy, then pulling back up onto his belly, then realizing that he can’t reach the toy anymore and doing it again.  I’m guessing that self-motivated, independent, half rolls are more useful than me coaxing him into assisted full rolls.

If we're going to make this pattern of therapists and goals and IFSPs sustainable, then it's going to have to be authentic, it's going to have to fit into our lives.  For me, it helps me settle into our family's patterns by reflecting on how the professional help and our daily lives interact.  I'm sure I'll be revisiting these ideas and adding things to this list as we go along.

Helping Max Find His Toes

When Toby was a baby, Christer and I agreed not to help him find his toes.  No stuffing toes in his mouth for us, we wanted Toby to have the joy of finding his toes on his own and the excitement of discovering, on his own, that he could suck on them.  It’s a silly little thing, but it was a policy we (mostly) followed throughout all of those baby milestones—wait for him, let him figure it out on his own.

It’s a philosophy I still try to follow with Toby—although I often forget and try to impose my agenda on him.  Last year he was at a play-based preschool—which basically means that they didn’t sit the kids down and teach them their numbers and letters, they set up lots of experiences around the room and let the kids mostly pick what interested them.  Toby didn’t bring home a single art project or coloring sheet all year, even though those activities were set up every day.  That drove me a bit nuts (arts & crafts have always been my favorite part of school) but it reinforced that we had made the right decision.  No one was pushing Toby to learn something he wasn’t ready for.  He was allowed to explore on his own and develop where he was ready to learn.

So, I was somewhat sad when our PT said it was time to help Max play with his toes.

We’re pushing Max’s milestones left and right.  We’ve shown him where to put his elbows so he can hold up his head during tummy time.  We’ve helped him roll over from back to front and back again.  He’s turning his head sort of funny when he rolls over, so we reach in and hold his head in the right position while we practice.  We mold his hands around toys.  We hold him up in sitting position to strengthen his tummy muscles.  And for the past two weeks I’ve been helping him get his toes into his hands, and then into his mouth.

Let me be clear.  If any of this can help Max in the long run, then I am all for it.  But I don’t want to be motivated by trying to push my baby to “stay on track” or to meet milestones faster.  And I really don’t want for Max to grow up thinking that we are pushing him to be someone he isn’t on a timeline that isn’t his own.

I know that with Toby, whenever I’ve tried to push my own goals, it has backfired.  Dropping the pacifier, potty training, talking, sleeping through the night—all of my attempts to push these skills were useless until Toby was motivated.  And once he was motivated, all it took was a little bit of facilitation from adults for Toby to master the skill.  I'm searching for the space to be a facilitator for Max, as well.

On that note, if anyone out there knows of any research or resources for play-based or child-led learning for kid with special needs, I would love, love to know about it.  I have a suspicion that what is good for typically developing kids is even more useful for many special needs kids… but I’d like a bit more to go on than a hunch.

Little Man on Campus

The best part of going to reunion was watching Toby explore my old campus.  He’s been figuring out this college thing, you see.  He knows that Christer teaches at a college, and he knows that students live at a college while they are taking classes.  He greeted the dorms with disbelief (“You lived here?  But it is just bedrooms!”), but was won over by the coffee shop, the study carols in the library, and the swings outside the student union.  (Yes, there is a swing set outside the union.)

I wasn’t sure how I’d react to bringing Max to Grinnell.  There are stories of young adults with Down syndrome going to college.  But they didn’t go to a selective liberal arts school.  Of course, that shouldn’t matter, Toby’s probably not going to Grinnell, either.  He’ll figure out his own path, probably one that neither of his parents could have predicted.

Still, being on campus with my baby was a very physical reminder that Max is walking into a future different from my previous experiences, different from what we had expected.

I’m still not sure how I feel about it.  We dressed him up in a collegiate T-shirt and posed him for pictures.  We wheeled him around the campus and soaked in the smiles and compliments.  He is a baby, and he did everything a baby should to attract attention and make his unemployed mama feel like she’s accomplishing something with that degree after all.  For now, that is enough.  We’ll sort out the dreams—his and mine—later, as we go along.

Sacred Space

I first walked across Grinnell College’s campus for a high school church retreat.  I didn’t choose to attend the school because of that week, but when I was making the final decision between similar schools it probably had some influence.  This week I’m back on campus for my 15 year reunion.  Christer and I are showing Toby around campus and telling stories about our college years (“Before I was born?”  “Yes, before you were born.”), catching up with old friends, and revisiting college memories.

I spent four formative years at Grinnell, and yet there’s one place on campus that makes me think of the summer week in high school.  For you Grinnellians, it’s the little brick paved space with wooden benches out front of Younker.  It was where our group from Missouri held our vespers at the church retreat.  Although my college years completely overshadow that one week, there’s something about that little space that belongs to high school.  It was a sacred space.

I still get chills every time I walk past—and every time those chills make me shake my head with amusement.  I walked past those benches every day for four years without incident, why does that space still call out to me?

Memories are so concentrated here.  It’s a small campus and I spent a relatively small chunk of my life here.  Every corner holds a ghost, a story, a memory.  Some of the memories are just plain fun—but several make me catch my breath in awe.  Places of worship, perhaps, but also the place where a friend broke down in tears because of something I said, the classroom where my world got bigger as I listened to a new perspective, the bench where I remember sharing a pint of ice cream with friends on a muggy evening.  Small places where the world shifted, and I came away changed.

Reunion is about stories and memories.  And drinking.  (Is that a red solo cup full of wine in the stroller’s cup holder?  I think it is.)  But I keep attending because it is also my little pilgrimage to my sacred spaces.  When I’m here I remember the hope and excitement of being young.  I remember the closeness of friendships and the way we pulled each other into adulthood.  In little glimpses I remember what it meant to be a part of a community.

After my five year reunion, I came away frustrated that a weekend together didn’t bring back the community I remembered.  Now I leave reunions inspired, and ready to do the work of building up sacred spaces in the community I now call home.