Sunday, July 29, 2012

In for a penny, in for a pound.


As it turns out, we went to Maine.
I know, I know.

My "perfect on paper" plan fell by the wayside once we realized how much we all--especially YH--missed the big kids.

And so we packed our bags and followed them north.
And it was lovely.

It was the kind of vacation that defies a linear narrative--you know those experiences that seem to happen beyond the scope of time and place? It was one of those.

****                       ****
YH at the lobster pound.

It is hot inside our rental car and the sun is shining so bright. The heat is unusual for this part of the country, this time of year. We laugh because it is rainy and gray at home in the South and so so sunny bright here in the North.

We have decided to surprise the big kids--they do not know we are coming. We are giddy with thoughts of our subterfuge. We stop at our favorite lobster pound (Lunt's) for lunch and place a call to my parents' house.

We talk to Sweet Bubs, who is busy helping my father build a set of stairs down to Ghost Hollow. We tell him we will call him back at 5pm--make sure he is at home. Make sure Miss A is there as well.

We kick our feet with anticipation as we eat our lobster rolls. YH sticks to french fries and lemonade.

****                          ****

On the ferry.
 When we arrive at the ferry terminal the line of cars stretches down the road and over the hill. So many! We slide into a "reserved" spot and wait for the chance to board.

On deck there is a new ferryman guiding us into parking spots. He looks like the character "Skinny Pete" from Breaking Bad. He has a New York accent and fidgety movements; he is not who we expected. He parks the cars four across instead of three (as is custom) and we find we are trapped in the car for the duration of the ride.

Sean scoops YH into his lap and lets him "steer" the car. We roll down the windows to let the smell of salt water and kelp in. It stings my nose and fills my lungs. We are so close!

Once we reach the island we roll off of the ferry and begin the short drive to my parents' house. We remind ourselves to wave at each car we pass--island etiquette requires it.

I see all the "For Sale" signs dotting the roadway. Taxes on waterfront property were raised last year. Blue realtor signs sit askew at the edge of the treeline up and down the road as far as the eye can see. Gravel roads lead into the pine trees, cloaking houses that have sat vacant for months. Years.

We turn onto our street (peeking to see if the trailer at the corner of the road is occupied this year) and into my parents' driveway. We stop short of the house and call the kids.
Sean says to Miss A. "Hey--you should go look outside." She is skeptical. Why should I go outside?

The door opens as our car drifts into view. Miss A comes spilling out with the receiver pressed to her cheek. She sees Sean and grins. I jump out of the car I am so happy to see her. YH yells out her name and struggles to be free of his car seat. Sweet Bubs is not far behind and he gets swept into the love crush.
My family. My beautiful family.

****                    ****
The secret place

It is dusk. I follow the kids down a narrow path into the woods. They are taking me to their secret spot, their clubhouse. We wind through saplings and fallen trunks. The hollow, with its briny tides, is to our left--barely a glint peeking through the trees. The path is soft with pine needles. It dips and rises on a whim, trying to trip you with a lattice of slick tree roots.

This way, the big kids say. They are impatient with my cumbersome adult form. They slip through the brush with the ease of hares--I am not so swift or fleet of foot. My parents' dog, Nina, stays behind to make sure I stay with the pack. She has become Sweet Bubs' constant companion over the last two weeks.

Suddenly we are there. Carpets of moss unfold around large gray boulders that reach to the sky. Rays of sunlight break through the treetops and warm patches of the moss, creating magnificent spots to curl up with a book. I catch my breath--it is the most perfect secret spot ever.

The kids spend hours here. Miss A is a queen and Sweet Bubs is her royal guard. He works for a three hour shift, wielding a staff to ward off intruders. After his shift is done he gets a two hour break, during which the Queen throws him a party--complete with cake.

It sounds like a good gig.

****                     ****

Sweet Bubs has gone feral. When he wakes he runs out the door, hurtling towards the trees, the mud, Ghost Hollow. He clutches swords made of sticks and brandishes them at imagined foes. He scampers up and down the rocks and over the tree stumps. He is agile and fearless in a way I never noticed before.

At the quarry he leaps into the deep water with abandon. He dog paddles furiously, and hauls his little seal-form onto the floating dock in the middle of the expanse. He knows the other boys there by name and soon they are engaged in an elaborate effort to wrangle an inflatable raft from one end of the quarry to the other. His laughter bounces off the sheer granite walls that surround his swimming spot.

He discovers something new and amazing at Fine Sand Beach. He walks over the rocks that ring the beach until he comes to a quiet and sandy cove. "Secret beach! I found a secret beach!" There are submerged rocks a few feet off shore that keep the water in cool, shallow pools made vibrant by seaweed and schools of bright green eel-like fish. There is a large flat rock that tilts toward the water-- it becomes a water slide for the intrepid at high tide.

At night, after YH is in bed,  he insists on playing ruthless games of Disney Princess Uno. He plays by his own set of rules--a trait that was encouraged by his grandparents, but that drives his father crazy. Sweet Bubs says things like "Pretty savvy move there Dad, pretty savvy." When one game concludes he says "Ok, ok--just 100 hundred more..."

****                         ****

Miss A waiting for her musical number in  the island review


If Sweet Bubs has gone feral, Miss A has become shockingly civilized. Shortly after we arrive on island my parents hand me a piece of paper dotted with colored squares. It is Miss A's calendar--the schedule of all her social commitments. She attends Rec Center two times a week, Library Program two times per week, and rehearsals for the Hockamock Players Musical Review. She also has playdates with her friend Sage.  Where the rest of us retreat into solitude on the island Miss A is taking after her paternal grandmother: a woman who loved to socialize and entertain.

At the beach she hones in on any other child around her size. She walks up to her target and says "Hey--do you know how to catch a hermit crab? Let me show you!" and soon she and her new best friend are thick as thieves. One dy she manages to get a group of six Quebecois kids (who are only speaking French) to help her round up as many hermit crabs as they can find. The little tribe builds an elaborate habitat out of sand and water and fills it with over thirty terrified crabs.

"Mom", she says, "I don't care that my new friends aren't speaking English--we're having fun anyway."

Miss A helps us clean out the barn. She comes across an old blue metal trunk in the corner. Inside are old furs, a musty silk pillow, and several dusty scrapbooks. There is also a yearbook from an international school--class of 1958-59. She studies the signatures on the inside cover intently, determined to solve the mystery of who the trunk items belong to.

She makes lists and cross-references them with the black and white pictures of girls and boys in tightly lacquered hair-dos. She comes up with several theories about who might own the treasures--the most plausible being a member of an island family that owns several houses near us. She makes up her mind to go to the closest such house and ask if they might know who the owner is--she has figured out a first name based on the looping scrawl in the front cover.

She marches up the drive and knocks on the door. A woman comes and Miss A asks if she is the homeowner. The woman says no, hold on...And then she turns and yells out the name from the yearbook cover! Another woman comes to the door and against all odds, it is her. The trunk's rightful owner.

****              ****

YH is thrilled to be with his siblings again. They all play together in new ways: scampering across the front yard down to the harbor, collecting rocks at the end of the lighthouse trail, curled up together with books.

His sleep is rocky at first. He wakes in a strange place and calls out for me. I scoop him up and bring him into my bed. He presses his cheek against mine and kicks his feet in a rythmic thump...thump...thump until he falls back asleep.

He loves the beaches we go to, alternating between warm sand and cold cold waters.

It wasn't such a dumb idea to come here after all.

****                    ****
We leave the island with sand in our pockets and heavy hearts. Sean and I have a list of things we need to do to the house next summer; it is overwhelming in the best possible way.

When we get home things are not so great. A big storm has delayed our flight so that we don't get into our home until 4 am. One of our dogs has had high anxiety in our absence and she is wounded. Our loved one is struggling with his/her addiction again. We realize our careers in education are unlikely to fund all of our dreams...

It's life. It's ugly and it's beautiful all at once.
We are together again, and that's the best thing we can hope for.

Monday, July 16, 2012

Front Yard.

Our front yard is not beautiful. The grass is patchy and plastic toys are scattered as far as the eye can see. There is a low fence surrounding the yard, built from wood and hog wire. The fence is in keeping with the casual style of our neighborhood--kind of wonky, kind of kitschy, and very friendly.

We spend a lot of time out here. More so now that YH has joined our family. We're out there every day, weather permitting. The fenced in yard has proved a perfect buffer zone for our youngest son. He can play safely within its boundaries, nestled in our "family space". But the view out onto the street, and of passersby, allows him to exhibit his friendly and sociable nature.

Whenever a neighbor, or a hipster on his way to the coffee shop, or a lady walking her dog stroll past YH rushes the fence. He stands on his tippy-toes, waving his little hand furiously and calls out "Hey-la-la!"

If it's a neighbor he recognizes YH will call out again and again until the friend comes over to say hi up close.  If it's a family walking with little kids we usually invite them in to play--all these plastic toys shouldn't go to waste.

YH is comfortable in our yard. He is comfortable having visitors drop by to hang out in the front yard.

He is not comfortable having visitors in the house.

We learned this last week, after the Early Childhood Intervention team came out to evaluate YH for services.

Three very nice, professional women came to our home to test YH's abilities in a range of areas. They were kind and soft-spoken. They liked YH very much, and he seemed to like them.

What he didn't like was having these strangers in our home--which up until then had been almost entirely a "family space".  The evaluation necessitated that the team sit in close proximity to YH. Much of the test was eye contact intensive.

About 30 minutes in I could see that YH was becoming uncomfortable.
He did not like having these people in our home. It was confusing, and unexpected.
He became clingy. He was fussy. He paced restlessly. He left the room and didn't want to come back.

After the team left--amid heaps of praise for our sweet boy--YH didn't want to eat lunch. He fussed when we tried to put him down for his nap and woke up agitated. He sat rigid in my lap and grasped at my shirt with clenched fists. He needed to be near me at all times.

This behavior continued for the next few days, lessening over time--but still noticeable.

I felt like a fool for not anticipating this.

We have been working so hard to meet YH's needs as he transitions to our family. To nourish his little soul in the hopes that a healthy attachment might grow and unite us in family love. To have his health issues diagnosed and treated as soon as possible so that he doesn't suffer needlessly. To get him the therapies and interventions he will need to thrive.

In a perfect world all these goals would fit seamlessly together, united in the goal of lifting YH up higher and higher. In reality the pursuit of several of these goals rub and chafe against one another, causing irritation where they meet. In this case the race to get YH early intervention services before he ages out (in 6 months) rubbed up against our efforts to keep his world small, to protect his "family space" and build attachment.

So we took a few steps back. We met YH where he was at with love and grace, and tried to re-establish the security that he felt was lost.

I realized that I had overlooked something important. I should have told him ahead of time that the eval team was coming, and how long they would be here. Even though he is 2.5, and in many ways living between languages, I need to take the time to explain to him beforehand when something out of the ordinary is going to happen.

I need to take the time to hold him close (if he wants to be close) and look him in the eye (for as long as is comfortable for him) and say "Hey little man, tomorrow we are going to the doctor's office. It will be a quick check-up..." and so on. I need to do this early and often--repeat the sequence of events and try to set expectations. He may not understand the words but the rhythms and the tone of my voice can convey what he needs to know.

I will do this. I have to do this.

Sunday, July 8, 2012

Risk and Reward

On Friday morning we had our pediatric opthamology appointment--the one which would determine if we would really and truly be able to set cranial surgery aside. 

Sean went with us. We sat in the busy waiting room for close to an hour before they called us back. There was a small corner of the room which had been furnished with kid sized tables and chairs, a box of books and some puzzles. YH zoomed his toy car all around the space, past the other kids. 

At one table sat a little girl about his age with the tiniest feet I have ever seen in my life. She kicked her wee glittery jelly sandals back and forth as she stared at the pages of a book. She wore a back brace on the outside of her clothes, her eyes appeared crossed and she had several silver teeth. Her hair was in two long pigtails and she turned each page with great determination.

Sean was hovering nearby keeping an eye on YH. The little girl smiled up at him and asked for another book. Sean showed her each book in the basket, and she shook her head "no" at the ones that displeased her and "yes" at the ones that met her approval. 

Of course Sean ended up reading one to her. Of course "one" book turned into four turned into five turned into...a lot.

Geez--the sight of my giant husband crouched next to a tiny chair, with a tinier girl in it patiently reading her stories....just. Just, wow.

Eventually YH was called back to the exam room. I had to cradle him while Sean held his head still so that the nurse could put drops in his eyes to make his pupils dilate. The drops sting so first they have to put in numbing drops. YH screamed and cried--it was awful.

When his pupils were finally dilated the ophthalmologist came in to try and see inside his eyes. She shined a light into each eye (when he wasn't squeezing them shut or burying his head into Sean's shoulder to avoid her) and quickly pronounced him nearsighted. Very, very nearsighted--with a slight astigmatism.

I asked about his intracranial pressure--did it appear elevated? 
No, she said--his optic nerve is fine, not swollen at all. 

So, no surgery?
No surgery.

Tiny glasses?
Yes, tiny glasses.

Oh, thank you universe! THANK YOU!

****                       ****    

The tiny glasses are ordered. They should be here in about 10 days.
We have one more specialist appointment on the books, and another to be scheduled.

The latter will definitely result in surgery--but it is not life-threatening, and it isn't time sensitive. At the moment it doesn't effect his daily life so we can wait a little longer to pursue the correction.

The former will likely result in a similarly permanent change to our sweet boy--the assigning of a string of letters to follow his name. 

Our next specialist appointment is with the geneticist--the first stop in what may prove to be a long road to get our son the services he needs to be the best he can be. You see, our son is likely on the spectrum of a "disorder" which is comprised of myriad different physical, emotional and developmental challenges. Each child afflicted by this disorder has a different constellation of symptoms/behaviors/physical defects--and differing levels of severity for each.

This is a disorder which almost always results in congenital brain trauma. It is a disorder which can leave kids looking "normal" on the outside, covering up their damaged brains, so that they are more vulnerable to people taking advantage of them, less likely to be able to control impulses, less likely to keep pace with their peers, more likely to be labeled "troubled"....the risks of "passing" include secondary mental illness, incarceration, addiction.

It is maddening to parent a child with this disorder because it is so hard to find a medical specialist who can tie together all the pieces--and so the onus is on the parents to gather information, stay informed, and advocate advocate advocate.

This is a road many parents of special needs kids have walked. This journey of needing to be one step ahead of the "experts". 

I have mentioned YH's risk factors--his likelihood of having this disorder--loudly and in clear speaking voice to each specialist we have met with so far. And each one has pointed out that he lacks certain distinguishing physical features, features which used to be key in diagnosing the disorder.

And I push. And I say, yes but he does have "x" which is a secondary physical characteristic. And I say yes, but in my reading I saw several articles discussing how this type of "risk factor" can effect his vision--is this the case for my child? And yes, he is on-target *now* but most kids with this disorder start to fall behind around 3 years old UNLESS they receive intervention/diagnosis...

And I can see the experts silently cursing my access to google. I know they think I'm being overly cautious, overly fixated on something which isn't yet an issue. 

Too bad.

This is my job. It is my duty as his mother to fight for this kid--and I am going to make sure that he gets the diagnoses he needs, and the intervention he needs. 

It is easy to dismiss the presence/absence of one symptom; it is harder to map the galaxy of factors that combine to inhibit my child.

I'm willing to risk the eye rolls and the dismissive responses of the doctors.
The improved health of my son--my son who has the deck stacked SO very much against him--is the only reward I need.

Thursday, July 5, 2012

Adventures in attachment parenting.

So this afternoon when YH got up from his nap I thought we'd play some "fun" attachment games. He's big on snacks so I decided we'd do one where you put a teddy graham in your pursed lips and have the kid take it from you with his mouth--like a teddy graham kiss. 
Oh the sweet bonding times we'd have!

Turns out we have no teddy grahams. No problem, I'll use O's. The article I read where I learned this game suggested using O's for older infants; I'm sure it will be fine.

So we go out to the front yard and he sits on my lap and I start the game and he quickly gets the hang of it. We're laughing and kissing and I'm mentally patting myself on the back for rocking it on the attachment front.

Then he goes in for another O, only this time when he pulls back there's some resistance and at first I don't understand what's happening. But then I feel a wet numbness on my upper lip, followed by intense stinging and my mouth fills with a copper taste.

Little dude TOTALLY bit my lip, majorly.

Now I think quickly enough to realize that all our cozy-attachment work would be undone by a) me screaming or b) the sight of my face covered in blood. So I tuck my wounded lip into my mouth, puff out my cheeks and cross my eyes--like I'm making a silly face. Then I get up and start dancing like a monkey into the house. YH follows me, laughing.

I see my husband and wave my arms at him wildly, trying to communicate that he should take hold of YH. He looks at me confusedly, but starts to distract YH.

I go into the bathroom and close the door so I can inspect the damage.

The center of my upper lip has a deep gash and the labial frenulum is pretty badly nicked.

Attachment parenting fail.

As it turns out the reason you use teddy grahams and NOT O's when you play this game with a toddler is because O's are REALLY small and a toddler could eat your face off trying to get them.

Lesson learned.

Monday, July 2, 2012

Seemed like a good idea at the time.

We are less than 48 hours away from the big kids leaving town for three weeks. They are headed on vacation with my parents, to an idyllic island off the Atlantic coast, while the rest of us stay at home.

This splitting of the family seemed like a brilliant idea--back before we traveled, back when I was so sure I knew the *right* things to do when became a family of five. You see we typically travel thousands of miles to this island every summer. It is a place where the kids can run through the woods for hours. A place where they spend entire mornings building fairy houses from moss and rocks and shells. We have a whole fairy village nestled at the trunks of trees near our house there, carefully constructed over the last two summers.

My parents go to the island for several months over the summer--it is the only way they can stomach living in Texas for the rest of the year. Sean's family has a home on the adjoining plot of land and it is all so ridiculously Robert McCloskey-esque that I can't read "A Time of Wonder" or "One Morning in Maine" without my eyes tearing up.

Over the past year we completely changed our professional lives, in part to maximize the amount of time we can spend on-island. Now that Sean is on a teacher's schedule we hope to spend at least a month there each year--every year.

Except not this year.

Before we traveled I thought that if the big kids got to go on-island with my parents for a few weeks it would give YH intensive time with Sean and I. I thought he would be resentful of having the big kids share the attention, and this way the kids would get their summer voyage and we would get to work on attachment.

It looks so perfect spelled out like that, doesn't it?

What I didn't account for was the utter joy that the three kids find in one another--even the middle child. What I didn't account for was the way YH runs out of our bedroom each morning yelling out his sister's name. When he find her he wraps her in a hug and they both tumble to the ground giggling. What I didn't account for was how intently YH listens to his siblings, and mimics their speech and patterns of play.

And now I'm feeling like his little heart will be broken AGAIN when he wakes up on Thursday and the big kids are nowhere to be found. Now I'm feeling like I really messed this up.

I know that in the grand scheme of things it could be traumatic to move to a new home base this early in our attachment dance. I know that routine, and keeping YH's world small, is SO important right now. But the idea of cocooning as a family on a small island--of spending every day outdoors and wrapping my youngest in cozy sweaters at night--is so appealing right now.

I can imagine the big kids introducing YH to all the island sights: swimming at the quarry, searching for shells at low-tide at the Carrying Place, tromping through the woods to get to Fine Sand Beach and splashing in the tide pools that dapple the rocks surrounding the beach.

I can see us spotting bald eagles from the deck as they swoop over Ghost Hollow. I can see early dinners and even earlier bedtimes. Somehow every night on the island ends with everyone in an exhausted heap--sometimes hours before sunset.

So I am spending this week mourning what could have been. Trying to take comfort in the "right on paper" aspects of the split, and preparing to say good-bye to my wonderful eldest children. I have never been away from either of them for this long--and it hurts my heart to think of the silence that they will leave behind.

We will get through it. They will have a WONDERFUL time. We will talk over skype each night, and we will be able to show YH that the big kids will come back.

People we love can leave and come back. We can love them while they're gone, and love them even more when they get back.