From the Mountaintop Archives

Enough? Not Enough? Too Much?

The therapy dilemma.

Elias has six appointments a week on top of four mornings of preschool. To him it is all play. All fun. He looks forward to every appointment and is often disappointed when he is stuck at home with just Mama. Car ride.. .car ride... go see Mary or June or Kristen or Jen or go to preschool again...he says almost every afternoon.

The boy just wants to go go go and the fact that I'm sitting at the computer with another bad head cold (how many times have I been sick this year?) speaks to the crazy schedule I'm trying to uphold. And its not all because of therapy, its my own need to pursue career goals and athletic outlets while also taking on the full time job of the schedule of a child with special needs.

(I'm no longer tutoring at the university so my schedule is lighter this semester but I often had time to do homework while at the Writing Center so in a way it balances out.)

I feel guilty about doing too much and yet as far as Elias's therapy goes I sometime wonder if we are doing enough. I'll read about more intensive techniques such as  Hyperbaric Oxygen Therapy or Advance Biomechanical Rehabilitation (too sick to find links) and wonder if Elias would benefit from this intensive approach. Should we spend a year doing nothing but therapy? Should we leave Alaska for somewhere that offers more alternative therapy approaches?  What if we miss the window of time to help his brain make new connections? Should I give up my own pursuits for a while to help Elias? Should we be doing more hours of therapy each day?

These are only some of the questions that don't let me sleep at night.

And yet another part of me sees the benefit of enriching Elias's life through more than therapy, medicine, and alternative healing. Through all those things that regular families get to do without a second thought. You know, play, explore, cuddle, teach, hang out, and be silly. Just be a family. And individuals. For Elias is more than his medical issues.

But.

I don't know. In one day I am just as likely to think we are doing too much therapy as I am to think we are not doing enough. I feel selfish for taking time away from his medical needs to follow my own path and yet I also feel like this time away helps me to be a better mother. I can't win either way and this whole in-between factor can be exhausting.

I know you can't answer my questions for me but if you have any insight into this dilemma I'd love to hear it.

Thanks. I'm off to pick the little guy up from preschool...

A Preschool Story in Three Parts

Part I

Will they think he's a baby because he crawls? Will his walker and braces scare them? When Elias doesn't look into their eyes will they lose interest in him? Will they understand what he does and does not see? Will they grow impatient with his pauses, with his processing delay? Will they understand what he says or become frustrated when his words don't make sense or when he doesn't engage in conversation? Will he be excluded from their games? Will they laugh at him? Will they point and stare?

Will he know he is different and that different is not always "OK"?

Part II

I’m crying by the second page but I keep reading the book aloud. It’s called "Nick Joins In", by Joe Lasker, about a boy in a wheel chair who prepares to go to school for the first time and wonders if the other kids will like him.

Elias loses interest in the book and squirms from my lap to explore the basement, where I sit in the rocking chair that use to be in his room before we rearranged it to make more space for playing.

I stay in the rocking chair and keep reading. Elias pulls playing cards out of the deck. The teacher in the book lets the other kids ask the boy questions. Why are you in a chair? Why do you wear braces? Why can’t you walk?  My voice breaks and I heave as I read but I can’t stop. Can’t stop reading it aloud. Can’t stop crying. Not little tears but full body sobs.

I read more. I wonder why the teacher doesn’t let the boy ask the other kids questions when they are through interrogating him. It’s only fair. And everything in my book needs to be fair. But as I turn the pages the author tells me the boy likes school and that all the kids grow comfortable with each other. And this too makes me cry.

“Mama’s just a little sad,” I tell Elias between sobs and he repeats my words. Mama a yittle ad. “Mommy’s crying.” Mommy cying.

I keep reading. Keep crying.

Elias just smiles and cruises from the desk to the bookshelf. The bookshelf to the desk. The desk to the chair. Exploring his surroundings.

He doesn’t know what makes mama sad. And he’s too busy to be burdened by my tears.  He jut thinks I'm funny.

And the funny thing is, when I let myself fully grieve, feel all the heavy pieces, then the final picture has more light. And I don't feel so sad.

Part III

After a car key mishap this morning, we arrive at preschool 40 minutes late. Ms Robin stands by the door as the kids form a line to walk to the library.

"Who wants to walk with Elias?" she asks as I hang his coat up in the cubby. 

A chorus of "meeee's" responds as hands race to be the tallest.

Not every kid wants to trail behind the others, next to the smallest one who often just stands in the middle of the hallway with his walker, smiling and looking around, but the enthusiasm of those who do makes the frustrations of my botched morning disappear.

Their upraised arms and eager faces contradict my deepest fears. How can I not smile as I walk outside into the chill February air?

A short update with more to come

How's that for a witty title.

I've been neglecting this blog lately. Not by choice but because my professors expect papers, projects, and presentations.

(Damn graduate school.)

As a counseling student, I wish I received credit for this blog. For this mine I dig. This unearthing of what it means to be Elias's Mama. What it means to be me: A girl named Christy who just yesterday was playing make believe, who still feels like she is dressed in clothes a few sizes too big.

What it means to piece together a picture I never predicted. Never could have perceived.

To study each piece seperately and then feel how they fit together-- so that in the end, I can look at the picture and know it's home.

But my professors want me to write APA style research papers on the connection between poverty and youth at risk, prepare power point presentations on the Life Span theory of career counseling, design "life skills" lesson plans for elementary students, and write my personal philosophy of healthy adolescent sexuality.

Not exactly Elias. Not exactly parenting a micro-preemie turned toddler who teaches more than any curriculum. More than any school.

But one of my pieces is to earn a graduate degree and certificate in school counseling and this includes homework. So that's what I've been doing-- I've been writing about the world outside of the NICU and Elias's new Special Ed preschool.

And after turning in my last big assignment (for now) on Thursday night, computer fried and sleep deprived, we escaped to Seward for the weekend. And though I did not leave Cuzuncle David's to find internet access--so I could post-- I did take some pictures along the road just so you all could see what the highways look like in Alaska.

Because you never do know where you might end up.

(All taken from the passenger seat of the truck as Nick drove.)

On Our Feet

Little shoes make me sad.

Tracey from Picture This has great pictures of little feet and little shoes on her “Best Shot Monday” post for this week.

Here are Elias's first pair of shoes-- hand sewn by the auntie of one of my former  students--that he never got to wear:

By the time he left the isolette and weighed a whopping three pounds, his feet had grown too big for them.

Elias has a duffel bag filled with hand me down shoes that he may never get to wear. They do not fit over his braces. Or his feet do not flex enough to fit them. We’ve passed along shoes, brand new Merrell’s and Teva’s, cute enough to eat, that Elias outgrew without his feet ever touching the inside.

When you’re feet prefer to be dragged behind your knees, when your main mode of mobility is crawling, then shoes can be a burden. Bulky soles and unruly laces that impede your progress.

I love shoes.

Every step down to our basement has multiple pairs of shoes piled on top of each other and most of them are mine. Dansko's. Puma's. Sorel's. Crocs, Simple's. Salomon’s. And bright orange fleece lined Merrell clogs.  To name a few. All sturdy. All comfortable. 

All made for walking.

I made this rule for myself when I moved to Alaska—no uncomfortable shoes-- and though I've broken my rule to buy heels for a wedding or cute shoes from a thrift store that I did not wear long enough to realize they rub the top of my foot all wrong, I’m pretty religious about wearing comfortable shoes. 

I still like style and am willing to pay more for shoes than for any other item of clothing but only if they cradle my feet.

And so today, when Mary, our PT, told me that she thinks we should see how Elias’s feet move without the braces for awhile, to see if they are making a difference, I didn’t think about how hard it is to gage if his therapeutic interventions are helping or about how much trial and error is involved in treatment.

No.

I thought: He can wear a pair of his cute shoes to preschool tomorrow!

Self Portrait

He'll always be in the picture somewhere. 

That's what happens when you become a mother. You stretch to include another into your frame.

(and for some, another and another...)

Until who you are is even greater than the sum of the parts, even greater than brown eyes and blue.

(And though there will be sleep-deprived days like today, a three appointment President's day, where the responsibility of parenthood will make you feel so fried that it's hard to imagine yourself as greater than anything but a ball of silly putty that's been stretched beyond reason-- still, at the end of the day, it's his antics that make you smile.)

Even now. Hours after he fell asleep, he sits on your lap and encourages you to write. Just a few sentences, he says. Just enough.

The Grace of Children

We're in the hallway. Elias stands with his walker before the front office of Turnagain Elementary School. I stand before him trying to coax him to walk to his preschool classroom. He smiles and looks around the foyer.

A kindergarten boy walking by with his father stops and asks, "What's wrong with him?"

Hmmmm...

"He has a hard time walking. He uses this to help him learn," I tell the curious one.

"I broke my arm! Want to see?" The boy removes his draped coat from his shoulder to show me his cast.

"Wow."

"Want to know how I did it?"

"How?"

"Snowboarding. I'm a snowboarder. I go over jumps. That's how I did it."

"That's cool. I've always wanted to try snowboarding," I say to the boy who smiles broadly back.

The father's smile is more tentative and he mumbles something about how soon my son will be racing down the hallway.

"There he goes," I say and excuse myself to pick up Elias's walker and chase after my crawling son.

Later, when I pick Elias up at the end of his morning session, I see the same boy sitting at a table outside the office. He waves and tells the little girl with him, "I know him. He has a hard time walking but he's a fast crawler."

She smiles warmly at Elias and asks me if I want to see her puzzle.

Open and Close and Open and Close

My mom use to say, "You can tell Christy's home. All the cabinet doors are wide open." I think I drive Nick a little crazy with my habit of opening zip pockets to find something and not zipping them shut. I cant tell you how many times strangers have approached me to tell me my backpack is open or something is falling out of my hockey bag. If you were to walk into my bedroom on any given day, chances are my dresser drawers will be open.

I pretty much suck at closure.

When my parents moved from my childhood home in Connecticut to Cape Cod in my early twenties, I called the Fitzgerald family in tears on Christmas Eve during my first holiday on the Cape. As far as I could remember we'd spent Christmas Eve together, as far back as performing plays that resembled Annie to the groans of our parents in the living room.

As much as I jump into new situations without first checking the landing, I'm always hoping everything I've known will follow me.

And not change.

And this is what is hard about Elias entering preschool. It is not the time away from him. I've been forced to separate from him since the moment he was born. Discharged from the hospital without him. Not allowed to hold him. Not allowed to sleep next to his glass box.

No, what is hard is that we can never go back. He will just keep growing and changing and disengaging from his dependence on me. As Amy said in her comment: "When we were in the NICU, all I wanted was for my son to grow, get bigger, gain weight, so that we could go. Now that he is home, I just want to slow time down and keep him tiny forever."

I now understand why mothers are always so surprised that their children are teenagers. Or parents themselves. Weren't they just crawling into bed with us in the middle of the night? Wasn't it only yesterday that he entered preschool and I sat on his "big boy" bed and cried?

I now understand how the elders in my writing group can write vivid descriptions about their 4th grade crushes. Their sibling fights. Their own children's first day of school. Wasn't it just yesterday?

I found the following line in my notebook, written in this class when there was only enough time to give the group two words to complete a sentence:

The past piggybacks on the present, yelling, "Slow down, slow down," I don't want to fall.

And as Elias said this morning, as he sat on the bottom step so I could put his "funky cool" braces on his feet for preschool, "I don't know where tomorrow is?"

Either do I.

But I know we'll find it.

First Day of School

I never use to understand these tears: the salt lines of parents on their little one's first day of school.

Especially when the child scoots so easily into the hubbub without looking back. Starts playing with push button toys and bouncing with excitement.

It starts even before we get there, when I wake him up in the morning and tell him he is going to preschool today. Prekool. Prekool. Going to prekool. So excited that he doesn't eat his cheesy eggs for breakfast. Not even a bite of the extra buttery toast he requests. Prekool. Car ride to prekool.

I dress him in a sweater with his name on it just in case he escapes from the classroom.

Just so everyone can know that this is Elias. This is my baby.

I am as anxious as he is excited. Do I have his boots? What if the teachers can't understand him? His mittens?  Will he eat there? Diapers? Will the other kids accept him? Did the teacher have time to read his Transition Portfolio (a document we and his therapists created to breathe life into the assessments and IEP)? Will he be  OK?

He is one of 8 children, two of whom do not have  "special needs" but are called, Buddy Bears, and are in the classroom as role models. It is a win win situation because they get to learn at an early age what it took me all these years to learn: that these "special needs" kids are just kids.

Elias is the only non-walker in the group. The only one who arrives with equipment. Six months younger than the only other three year old and by far the smallest kid in the room.

I stand  in the corner watching the other children watch Elias. Unsure but open.  Elias crawls from station to station exploring. He pulls himself up to standing by two bigger kids and boldly reaches for their toy. They let him play.

After a minute or so he moves on and sits  in the open area where they will meet for circle. I watch as he moves his legs out of the most stable but harmful W position and says something in his soft hoarse voice as he does so. The boy closest to him, who is already five, leans down and asks Elias what he said.

I am too far away to answer and Elias doesn't respond but I understood his words.

"Good job putting your legs out," he said, congratulating himself as we would have.

Circle time begins with the children standing and clacking sticks together to music. Miss Robin helps Elias to stand by letting him lean against her and she gently brings his hands together to the beat. Elias watches the other kids move.

When it is time to clean up the sticks, all the other preschoolers put them in a bin while Elias sits (in the w position) and hits them softly against the floor looking in the opposite direction.

The teacher for the visually impaired, who I met at the assessment and liked instantly, who will visit the classroom for a half an hour each week but told me he will spend some extra time during these initial weeks, asks Elias, "Can I help you put them away?" Elias hands his instruments over and crawls away.

The rest of the kids gather criss-cross around the circle as Elias pulls himself to standing at a nearby desk to push more buttons. The other kids look at him and look at Miss Robin.

Look at him and look at Miss Robin.

She says, "Did everyone say hello to Elias?" Varied versions of hello follow. "This is his very first day of preschool and he doesn't know yet what we do here. So all of you will have to help him learn."

The assistant teacher leaves the circle to do a puzzle with Elias and I give him a kiss goodbye. I have to fight the urge to stalk the preschool classroom by peering in through the window on my way out to my car. Instead I drive to the Coastal Trail to go for a run.

Once home, I sit in Elias's room, on his "big boy" bed, until my comforter calls me. I bury myself in.

And bawl.

When I grow tired of this, I decide to make tuna noodle casserole, my favorite dish as a little girl. As I wait for the water to boil, I turn on the computer to write an overdue email, but before I can, I need to find the man's business card, and my search for that leads to my dead cell phone, which leads to my hunt for the charger, which leads to the basement where I decide I should do laundry, which leads me back up to Elias's room until thank goodness my friend Anne calls to see if I'm alright and saves me from my manic puttering.

And then Kathy calls.

And then it is time to pick my baby up.

I get there five minutes early and he is still washing his hands from snack. His face lights up when he sees me and he crawls over to say hi.  One of the new speech therapists who works with him brings over his coat. Miss Robin says he did great. "He's a very busy guy," she says.

When I tell him its time to go he says, "No coat... No coat."

Meaning stay...stay.

Why I don't see my son as disabled

It is not because he is so darn handsome, though he is. I know.

And this is not the post where I write about his inner beauty, about the light that everyone seems to notice.

It is not even the one where I write about the inadequacy of words like disabled, special needs, handicapped, crippled or differently-abled to explain my son. Or anyone.

No.

This is the post where I reveal my own biases. A by-product of segregated schools and communities. Not by races but by needs.

As a child I saw these kids load and unload their special bus. The short one. I saw that some of them rode in wheel chairs and some walked with awkward gaits. Other's faces appeared odd. Not the same as mine or my friends who watched from a distance but never walked near enough to understand.

None of these kids attended my classes but they met somewhere else in the school, somewhere I never went, never saw.

(And what I didn't know is that years earlier they--Elias--would have been locked up in an institution, even farther out of sight.)

My friends and I called each other "retard" or retarded" when we did something foolish, or in our eyes, "stupid."   I sometimes walked with my feet turned awkwardly in towards my ankles--the same way my son tries to walk now--and held my arms up, with elbows out, and hands dangling in front of my chest, "Wait for me," I'd cry in a voice that wasn't mine but an echo of this difference that I feared.

A difference that made us giggle in a way that wasn't silly but more self-conscious and uncertain. 

And yes, cruel-- though we didn't mean to be. We just didn't know.

I was the girl I am afraid for Elias to meet.

(I wrote about this already, before I started this blog, before Elias's diagnosis of CP, for a Club Mom "Story From the Heart" and I'll link to it here --but I feel like we've traveled so far from then...)

The reason why I do not see my son as disabled is because he does not embody the images my subconscious still holds of these kids as "helpless", "inferior", "incapable", "stupid", "pitiful" and not quite as human as my friends and I who ran so easily past.

And despite the shame in those words, I need to write them.

For now I know that every single one of those children was somebody's baby.

Somebody's Elias.

Elias starts pre-school on Monday--(with a fabulous teacher by the way)-- and though I'm choosing to drive him for now, so I can get to know his teachers, therapists, classmates, and school even better, he is eligible to ride that short bus.

And someday he will.

He will sit with all kinds of children who are not so different after all. Not so scary. And nothing like the false images I slowly weed.

With help from little sticky hands that wave real big.

This and That

I have so much to write about and not enough time. Class starts in 43 minutes and I already lost one full post this morning. So this will be the short choppy version.

Elias's first IEP meeting--that he did not attend so that we could attend more fully-- went well. No big surprises from his initial assessment. Nick and I felt like they got an accurate picture of both his strengths and needs. And his goals for his first school year seem realistic.

I should be able to meet his new teacher on Friday, fill out more paperwork, endless paperwork, and enroll Elias to begin preschool on Monday.

Oh. My. God.

Pre-school??????

We were just in the NICU yesterday, holding our hands on his tiny head.

After spending the past three years waiting for him to develop I am just now realizing that developing means growing up and leaving his baby clothes behind.

(OK so he still fits into some 12 month shirts but...)

For his third birthday, we converted his crib to a toddler bed, his "big boy bed" and he has already fallen out twice while sleeping without waking up. And once while holding on to the end bars and jumping up and down. He fell over backwards and rolled off while Nick and I sat on the floor watching, unable to react in time to catch him.

He just looked up and said, "Elias fall down," with a smile.

God, he is resilient.

During our radio interview today, to raise money for the Children's Hospital, the on-air personality for KASH for Kids, named Goat, asked Elias, "What does a goat say?"

"Baaah" he said, on cue, into the microphone. So proud. Endlessly proud. Elias talked a little bit more about cows, trucks and escalators in his hoarse hard to understand voice before insisting on crawling off to explore.

Goat asked me about his birth, his NICU stay, and what we have learned from the process. He asked me what my greatest fear was now. I answered that people would only see the walker or the boy who did not make eye contact and not the spirit of Elias.

After the interview, a doctor from the Pediatric Intensive Care Unit told me that as she listened to my answer all she could think about was that she, and in her words, "everyone in the room" saw when Elias entered was spirit.

Not his Cerebral Palsy. Not that he is visually impaired.

Not his new label on his IEP: "Multiple disabilities."

Just a little boy who shines. And chases escalators. And says, moo...