The Biggest Disability

Every once in a while, I'm reminded of my son's disability, of the reality of Downs Syndrome.  Most days, he functions so well and so seamlessly in the family, it doesn't get considered.  He's their brother. He's our son.  We go about our day, breakfast, clean up, get dressed, make the list, organize the day.  The kids do their work books or play. We have lunch. The teen goes for a run.  The next teen plans her afternoon on the phone, the girls play a game and the boys pair off and I do whatever work didn't get done earlier.  Until recently, I spent a lot of time writing.

But my son is getting older.  He'll be seven in September, and with that growth, he's become independent, if not safe.  He knows what needs to be done to make a sandwich, to pour a drink, to go outside.  He cannot make himself a sandwich, pour a drink, or go outside without assistance.  But he does not know that.

When we go out to the park, I spend my time worrying about his running, and about how to keep up with him when he will get taller and faster as I get older.  He says "Hi" to everyone on the trail, and wants to go up to every dog.  I worry about him getting bit because he might be too rough with the dog.

While working in the kitchen, he pulled a cooler to me.  I had to tape it shut because he wanted to get in it. Clearing out the room of trash, he called me to come see his bed. He'd placed stuffed animals on it.  "Look." he said, and before I could compliment him on his project, he ran to his sister's room to yell into the fan, and I worried about the fan.

We signed him up for swimming lessons.  Within minutes, he'd escaped the instructor and jumped into deep water, requiring a rescue.  He now wears a life jacket for the lessons, but the lesson I keep learning is be afraid.  Be vigilant.  No matter what.   Because while Paul's independent, he's not safe.

Back when I was just a teacher, I had a student whose mother hovered.  I wish I could apologize to her.  I now understand her fear.  While a teacher, I preached independence, self sufficiency.  I didn't have to live with the random wrong or dangerous choices her son made every day in their home.  The school doesn't have a microwave or a toaster or a bathtub to worry about, and my classroom came with two assistants and multiple locked doors to prevent random running and a high fence around the grounds.

I still want him to become capable, so that he doesn't become safe at the cost of capacity to act, but it is hard. It would be easier to stop pushing him to become more capable, It would be easier to lock him in, lock everything up, and make the world padded for his protection, but only easier until he entered the unpadded world.

Both the mom and the teacher in me knows he needs to be able to act in the unsafe world.  So I took him today for a little run on a trail, his sister, him and me.  He loved it, except for the leaf he threw from the bridge that got caught in a spider's web.  It was supposed to fall into the creek. He felt vexed it didn't, so he threw another one.  That one floated past the web. But the original leaf remained suspended.  Watching the other leaf float down the stream, I noted the better leaf didn't make it to the water. It would have floated splendidly if it hadn't been caught by the sticky part of the web.   The web kept the leaf safe from getting wet, but also kept it from moving on, becoming a boat, and traveling further than it could go by itself with the dull summer breeze.

When we got home, I thought about how afraid I'd become for him, and how dangerous that fear was for him, even in some cases, more dangerous than what I sought to protect him from.  I would trap him as the spider, suspend him from growth while keeping him safe.  So I've written notes to myself on his IEP, because his objectives and goals of self sufficiency and capacity can only be reached if I make some goals and objectives to be met too.

Let him begin to float down the stream.

Boiled Water

Today, one of my teenagers was having a hard day.  One of THOSE sorts of days.  He also was making a late lunch of macaroni and cheese.  He'd set up a pot and started the water, but not before engaging in a bit of sniping at two different siblings, reducing both to tears and making his mother quite annoyed. 

Talking now seldom generates any response worth noting.  I've shown him scripture as a means of illustrating that this problem of needing to have a well trained tongue is something people have struggled with since the beginning.  I've tried separating him, giving back exactly what is given, (that fails majorly), and promises of major chores or punishment for continued backtalk and insults of his siblings.  Yet I know within him is a reverent soul, a generous soul, the first to give to the homeless, to buy a treat for his younger sister.  He's also the most prayerful I've ever seen serve mass, a man with great humor is growing within, he just is as of yet, not fully capable of regulating his thoughts, his words or his deeds.  He is disciplined, he is quiet, he is loud, he is silly, he is competitive, he is courageous, he is a loner who is lonely.  It is a delicate and difficult process, this raising a human being to become a man.  I know his many fine qualities and I know his faults and regrettably, sometimes in the course of parenting, he reveals mine.

After he stormed off insisting on the discussion staying only on the particular incident whereas I was seeking to get him to see a larger pattern, I noticed his pot was boiling over.  I added a dash of salt and then the pasta and set the timer and waited for him to return.   A fleeting prayer not to lose my temper caused me to visualize dashing all my frustrations and even seemingly righteous wrath at his callous responses to me and MY children at Christ's nailed feet.  I knew I was part of the problem, I wasn't quite yet ready to own it.  I too wanted to point to the particulars when Christ was pointing to the larger pattern. 

"Thanks for starting my lunch." he said. It was a teen version of an apology and I knew it. 
"You're welcome.  You know, sometimes, a little thing can cause something bigger to boil over.  It just takes the right amount of heat." 

He nodded.  "Are we talking about macaroni and cheese?"

"We could be.  But sometimes it takes a lot of heat and even boiling over to make something that is hard and impossible into something warm and softer." 

We talked about how bad moods are contagious, how they destroy this place, this family, how they prevent the family from being what it should be, a source of hope and health and warmth and comfort, as well as structure, discipline, guidance and patience.  Bad moods and insults tear down the place, the people that should be your source of hearth and home and love.  No one should have to be on guard in their own house against a barbed tongue or a wrathful spirit, not from a parent or a child, and being a teen or a parent of a teen is not an excuse.  I needed to become softer too. 

He nodded again as I handed him his lunch.  "I love you son."  "Sorry Mom."  and he sat down to eat.  

I can only become softer and warmer by being thrown in the hot water with a touch of salt. Mental note to keep pasta in the house until adolescence passes over, and maybe learn not to be so stubborn and stiff necked myself too. 

She Lapped Him

It's been coming for months.  Paul and Anna are deeply connected siblings. 

Two years apart, Paul has been her constant companion as she grew through milestones that every baby en route to toddlerhood does.  Crawling to walking, mush to solid food, talking in single words to sentences.  Paul has been her guide through the jungle of living in a large family, giving her access to bananas via a strategically moved chair and a bit of stealth, stashed sippy cups and teaching her that a band is ready to go within minutes if she opens up the kitchen cabinet. They both ride in car seats, sit in high chairs and aren't potty trained.  These common factors plus their mostly non verbal status made them perfect with each other.

But the same element of time that grew Anna into a perfect companion will grow her out of it, as she has begun speaking in sentences.  The very joy we feel at noticing her "firsts" is twinged with a reminder of someone else not having reached those developmental milestones. 

Last night we had lamb for a family dinner and she daintily put couscous on a fork to get every last grain.  Watching her ask for more and say "Thank you" when she did, we tried to prompt Paul to imitate her.  He gave us a few grunts which we hailed with equal enthusiasm as her full participation, but it aches to know, the tide is shifting, she will go on advancing at this swift pace, noticing and saying colors and animals and shapes, and he will move slowly, pointing at what she now names.  She will be the instigator for a time as they continue this friendship born of family and proximity and age.  She will lead him to discover the world more often, as she laps him. 

Because we have so many ages, I don't often get to marvel at the rush of time and transitions and changes as they happen, I only get to suddenly get slapped by a wave of recognition, a tide has come in or a tide has gone out, the beachhead has changed and I didn't notice until now.  

There is still a long stretch where they will be best friends, but the first whiff of when it won't be, is in the air.  I can't help but feel a bit of the loss, just as surely as when I see my 11 year old starting to peel off from her 7 year old fan who would do anything to stay in that orbit and the 16 year old starting to feel a bit shaky as the world before her looms and suddenly the house she's planned to fly away from for years seems a bit more comforting and desirable than she thought.   It is as if time is the moon and I get to watch this dance go on and on and on with the ocean trying to somehow stop moving and the sand remaining equally resolute in its stillness even as they both collide and mix and keep changing.   They want to grow up, they cannot stop, they fear the unstoppable nature of it.   

I just have to keep saying, "The next step is better. The next step is better."

Stop Already! Or At Least, Let Them Eat Cake.

I have had children in the school system for 15 years.  In that time, I have watched academic creep. What was for third and fourth graders, is now taught in second, what was first grade is now expected of kindergarten.  What my children do in high school, I remember struggling to master in college or opting to avoid all together.

At the same time, the schools go merrily on discussing how our kids should 1) volunteer 2) get 8 hours of rest 3) exercise 4) read for recreation 5) join at least three clubs or 1 club and do a sport and have a social life that includes at least 5 friends and regular-get-togethers.  They should also feel free to let the teacher know they couldn't finish an assignment if they needed to rest but know ahead of time, they'll probably be penalized for not turning it in on time.  They also are informed that high school is a time to try out new interests, but if you do poorly, know that this will affect college applications and there's no mercy for mess ups.  It's goofy. Apparently, if you are not carpe the hell Diem out of every moment, you're flunking parenting and childhood. 

I protest.  I was a teen. I remember being stupid.  I remember not getting 3/4ths of what I was supposed to do.  I remember listening to the same record over and over again, playing video games until my quarters were all gone and having nothing to do.   I remember being bored.  We have become a society that does not value rest or down time or non online time.  Every moment is caffinated and stimulated and saturated with live stream and twittering and email and wi-fi. 

As the parent, I wrestled with the desire to tell her to blow it off.  Honestly. I wanted her to just relax about it and go to bed.

This was not a case of a girl being irresponsible, this was a girl who had done homework over the weekend to get ahead and now was working on new assignments that arrived this week. She took a 30 minute break but was still working at midnight only to receive email notification that two of the assignments were no longer due the next day even though they'd been assigned as due.  So she lost sleep and time to work that was no longer immediately necessary and had the unfortunate situation of still having work that was due which she had not yet done as it was supposed to take only a few minutes of time.   I know because I got to hear this rant last night when the strung out teen couldn't find a paper she was supposed to correct.  She'd done the work, it had been graded, she'd made two small errors but the paper was missing.

It was physics. 

Rather than allow me to send an email explaining the mishap, she redid the entire thing.  She explained, "Yeah, maybe I lost it but that won't mean I won't be penalized."  I understood she was partially correct, there is a tyranny of policy that sometimes seems to trump common sense and sensibilities. And while I thought her teacher would probably be reasonable, she didn't feel she could take the chance. She also explained she wouldn't be able to sleep knowing it wasn't done.   

Being incompetent in physics, I did the only thing I could do, I brought her cakes and milk. 

It made me wonder how and why there hadn't been push back against this demand to make children master what we did not, to demand they know more than we ever did, sooner than we did.  I know why. Part of it is ego manifested in vicarious pseudo virtue competitive parenting.  You know what I mean, "my kid is an honor student who takes physics and is on the highly selective competitive team of whatever that wins and is better than all those other...blah blah blah."  Part of it is the desire of school systems to win that battle on the district level.  Our children are foreign policy experts, Olympians, multi-jointed multi lingual TED talk worthy thinkers with steve jobsian inventiveness and oratory skills that put the founding fathers to shame.  They can assemble a plane from a bicycle just like MacGyver and have memorized Pi out to the 1,000 number (9).  Next year, we're making them expand it to 2000, but with a calculator and by hand.     

As a society, we keep demanding more without  ever pausing to consider what we might be losing in the process of demanding that kids act as something other than kids.  It started with the death of recess and shortening of lunch, the professionalization of parenting and extra curriculum activities, the banning of sweets and treats and firm denial of the reality that there is always a bell curve in every class.  We've decided as professionals and a people, the definition of success is the highest standard deviation.  In statistics, these numbers are supposed to be thrown out and not applied towards one's generalizations that might come from the data.  The question becomes, when college students have to produce Ph.D. work, what will the doctoral students do?  I don't know about you but I'll cry foul when I can't adequately assist with Kindergarten homework.  The authorities will probably declare me unfit and make me return to preschool at that point though. 

My daughter finished her work. She chatted happily over her snack, buoyed by the little something and the knowledge she'd finished.  She said it was a good thing I'd shown up, or she was prepared to break out a journal and start writing how she hated the world and everyone because it was just so hard.  But the little dessert, that was enough to take the edge off of everything. 

I learned something they don't teach you in any grade.  Midnight snacks and milk even cure the ills of physics and high school. 

Can I See Your Writer's Liscence?

Yes. There's a problem officer.

As followers of this blog know, I have a book I've worked on for five years.  What I can tell you now that I've written the darn thing is I did everything wrong except to keep going until the end.  Writing a book without an outline (which is what I did), is like sitting down in a car and thinking you can drive on the Autobahn because you've played Mario Go-Kart against your kids and sometimes won after falling into the mushroom pit only twice in a five lap race. 

There are subplot dead ends all over the place. The thing needs a hair cut, a styling and a wash and blow dry with a flat iron. It is my beautiful Frankenstein.  It's alive.   It shouldn't hold together but it does, and it is my creation so I love it.   But it's a wet hot mess that needs work work work.  

When I start to pull at things, there is a domino effect. I write this and it means this needs work and this needs to be addressed and you forgot that, such that I wonder, should I even touch this?  People who know nothing about remodeling but try to "do it yourself" discover that the first step to remodeling is to be willing to tear something down or take something away.   I find when I DIY, there are nails sticking out that shouldn't, holes that weren't there before and eventually, I need to call a professional. Who did I think I was kidding and why am I here driving myself crazy?  It reminds me of 8th grade when I ran a race and I'd gone through three laps of the thing. Everyone else had finished and I lay down.  I didn't quit but I sure thought about it for a few minutes while I caught my breath and wondered why I ever started running in the first place.  What was so important?

I read my book and truthfully, I both want to finish and lay down.   I want to tell everyone I wrote it...and I'm not sure I want anyone to read it.  It is the neurosis that plagues every writer.  We know bad writing. We know good writing. We know there are flashes of both in our work.  We also know the most critical thing is to not be afraid of what we've written or what needs to be rewritten.

Most writers do not like rewriting. It means we are redoing.  It's much more fun to create new worlds and new words.  So we stall. I read on the process of editing. I read a secondary source for the next book. I write about editing. I make copies of the book in hard back so I can edit but call that part of "the process" of editing. I talk about editing. I call others to talk about editing. I buy colored post-its for editing and a special pen, then I lose them and the kids play with them until they don't exist. Darn I have to get more BEFORE I can edit.  Maybe I should wait for my editor to make suggestions.

In short I do everything I can think of without editing.  I work on the next book and pretend I'm not making the same errors of rushing in to write it rather than thinking it through, stubbornly believing because I'm more experienced, I'll not make the same errors.  Rather, it is more likely I'll make the same errors but be convinced I'm not in error, like the way I have to get lost to get to my kid's basketball practice court because I got lost the first time and the second because this is the way I came and that looks familiar, such that going the wrong way has become an ingrained part of getting there intuitively.

Right now, I could be editing.  You know what I'm thinking about doing?  Going downstairs to play Mario Go-Kart.  

Officer, "Would you care to sit down in the chair? There's a warrant for your editing and I've been instructed to take you to your computer."  

Hopefully I'll make parole for good behavior.

What Parent Books Won't Teach You

Not talking politics today so don't bring it up.--Sherry

Today, my son had a wardrobe problem.  Specifically, he was very angry with his pants.  

"They're too long on the inside." he whined as I pointed out that they were 1) clean 2) his size and 3) relatively new. 

When he suspected I wasn't really moved by his complaint, he added, "They hurt me on my leg and pointed to a discreet place on his shins and they're itchy and they don't work."    Now I am working on not allowing the practical gritch to marshall through issues like this using emotional brute force.  Making said child get dressed by barking, "Just put the things on!" was my first, second and frankly third and fourth thought when considering options.  

Reminding myself that this person does not care that I think their problem is completely irrational and unreasonable, and that not seeing that they think this is insurmountable makes ME the irrational and unreasonable one in the senario, I told him to go to the bathroom and wait.   A quick survey of the laundry indicated there wasn't a Miss Congeniality version of uniform attire waiting and ready to take the dethroned pants' place.   I turned the pants inside out to see if there was in fact a reasonable reason for the pants being so  unsuitable.  Alas, there was no discernable reason that an adult could fathom why these clothes were so unacceptable today as versus last week when they were just pants.

Racking my brain for alternatives, I could 1) bluff and say this is a different pair of pants that I just got out of the laundry basket and hope he bought it; 2) insist on putting them on and pay the emotional consequence cost of having a miserable son cry about his mean mommy forcing him to get dressed or 3) somehow make the salespitch of my life to get the wearer and the said navy slacks reunited and in accord with one another.

Taking a deep breath because I knew option 1 wouldn't work since he had already done a search for an alternative pair, and because option 2 was really really really tempting; I knocked on the door.  "I want to talk to you." I said.  His eyes were a little wet from the struggle of that morning already.   "Can we try them on so I can see what's wrong?" I pleaded.   The seconds went by and I waited.  Like hooking a fish, if you pull up too quickly, you lose.   He nodded and I left the room.

Five seconds later, there was a knock and my heart sank.  "Can you come in Mom?" he asked.  This was it, he had changed his mind and I was going to have to do a grafting of those darn things onto my kid's legs.  I opened the door and there he stood, dressed. 

"Oh!" I beamed.  "You look nice!" He flowered into a smile. 
"Yeah, I thought these pants were too big."
"But it turns out you grew a bit bigger." I added hastily. 
"Yes, it must be because I'm six now." he explained. 
"That must be it." I nodded.

"It's funny." he added. "I've tried these pants on 1000 times and they've never fit."

Deciding not to correct him on his memory, I kissed his cheek and said, "Guess you need to try One Thousand and One times." 

Going down the stairs, I mused over what all had happened in the span of ten minutes.  1) I'd kept my Lenten resolution 2) He'd gotten dressed and 3) we'd experienced a touch of wisdom that seemed likely to stick if not for him, for me.   Feeling very satisfied, I started making lunches.  But the battle of virtue over orriginal sin within  the heart goes on undeterred.  When one opportunity for suffering and sin has instead become a moment for grace, a new opportunity must be presented.

"Mommmmmm?  I can't find any socks."