Our Little Escapee

I can thank my son for helping me stay fit.

In Boston Public Schools they are called "runners."  In Collier County Public Schools, they are called "elopers."  In our own home, we call them "escape artists."  Regardless of the name, our son one of them.  These are students that bolt out of the room and require a search party to find them.  This is our son the moment he learned to crawl.  He is always attempting to run away.

It's funny when you think about it, because literally our son does not yet walk.  But he can crawl faster than a cheetah runs.  When does he pick up speed and book it out of a room?  Whenever and wherever there is an open door.

At the toddler play area of the Children's Museum, our son sits near the swinging door and tries to crawl out every time another child walks in.  In the library, he presses his face against the glass door and waits for it to be opened.  In the homes of other children that we visit for playdates, he bypasses all of the toys and searches the walls and corners for an exit, through which he will eventually be found.  At a recent birthday part, we had no sooner entered than he had crawled right back down the hallway to the exit.  At the playground, he finds his way right back to the gate entrance and yells in frustration when it is locked.

Which leaves me wondering many things.  From what is he running away?  People?  Noise?  New activities?  Forced interactions?  Why is he so interested in leaving wherever we are?  Why does he cry when I pick him up and bring him back to whatever activity is happening at the moment?  Why does he feel a need to escape?

Maybe I'm asking the wrong questions.  Maybe he is running TO something.  To what could he be running?  My wife answered this one.  Home.  His toys.  His Brainy Baby videos.  His crib.  The place where he feels most safe and in control.

And yet...

Our son discovered our lanai (what Floridians call a screened-in patio).  He rides his little truck to the sliding glass door and needs to be helped over the door's track.  As soon as he is outside, he turns around and wants to be helped over the metal track to come in.  As soon as he is inside, much to my frustration, he turns around to go back out.

Maybe he is not coming or going.  Maybe he is not running away from or running toward something. Maybe he is fascinated by the concept of the door itself?

It just doesn't make sense.

In reality, this means that we often have to leave as soon as our daughter gets excited and engaged in play.  It means that I have to have my son firmly in my grip or I lose him around the corner or through a door.  It means that the one time I got special permission for my son to ride his little truck at the Children's Museum, he turned around in the middle of the displays and zipped toward the glass exit doors.  (I had to run full-speed after him and almost didn't catch him in time.)  It means that when he gets older and goes to elementary school, he will be the child who is announced over the intercom, "We have an eloper.  Blond hair, blue eyes, yellow shirt, Kindergarten wing.  All extra staff please check the hallways and bathrooms."  And hopefully later, "Eloper found. Thank you."

Yes, this is our son.  A runner.  An eloper.  An escape artist.  Coming, going, we don't know.  He enjoys the tightness of being restrained in his carseat.  It helps him feel safe.  He enjoys tight hugs; they calm him down.  Yet he keeps trying to enter the big, noisy world by himself, where the freedom and the sound is overwhelming, through doors that both open and close.  We have to stay on our toes, and watch him closely.  We don't want to lose him beyond the threshold.

The Twin Thing

Our son standing (!!!) on the left

After reading my last post, a colleague with twins contacted me and encouraged me not to worry about my kids' relationship with each other.  She said that it is amazing how deep the twin relationship goes, and referenced her experiences with her own twin girls.

Then we suddenly witnessed it.  It was bedtime.  We had turned the clocks ahead one hour for daylight savings time the day before.  Every night my wife and I alternate which child we put to bed.  We had already closed the window shutters, turned on the bedtime music, and switched off the lights. On this night my wife had our son, who was uncharacteristically upset.  She could barely contain him on her lap while he kicked, flailed, and screamed.  I sat across the room with our daughter, who was content to be snuggled.  My wife asked, "Why is he so upset?"

"I don't know," I replied.

"Mama," our daughter said to me, pointing to the light peeking through the window shutters.  "Sun, bight, side."

"Yes, " I said, repeating as only a parent can, "The sun is bright outside."

"Sleep, night, dark," she continued.

"Yes," I said, "you go to sleep at night when it is dark outside."

"Bight Kah-yee aaaaaaaaaah!" my daughter mimicked her brother's cry.

Whoa.  I looked at my 21-month-old daughter.  "Are you saying that your brother is upset because it is bright outside and you usually sleep when it is dark?"  She smiled sweetly and snuggled closer. I called across the room to my wife.  "She says he is upset because it is too bright out to be bedtime."

My wife consoled our son, telling him that it's okay, that she understands it is still bright outside but it really is bedtime.  He settled down a few moments later, and we put both children in their cribs.

Leaving the room together, my wife whispered, "What exactly did she say to you?!"  I told her.  My wife said with awe, "How could she even know that?"

It is amazing that our daughter could understand her brother and communicate his needs so clearly when typical channels of communication are not available to him, or between them.  Strange that we are so worried about their sibling relationship, then they surprise us with this mysterious twin phenomenon.

A few weeks ago I overheard my wife asking our son's beloved speech therapist about his progress, or mostly lack thereof.  I was surprised to hear that his lack of effort to communicate is not typical at this stage, even with his current diagnosis.  Usually kids are frustrated and eager to learn new ways to communicate their needs  (i.e., using gestures, pointing to pictures).  Our son expresses neither frustration nor a desire to find an alternative way to communicate.  He is an overall happy kid.  The speech therapist noted that this is because we anticipate his needs so well.  She said that our son doesn't have to communicate much to get his needs met in our home.

Hmm.  We have been following the speech therapist's guidance and increasing our wait time.  We have been demanding that he ask for more before we continue reading his books, or before we give him seconds on food.  It's still hand-over-hand baby signing, but we do this often.  But now I wonder.  How much does our son communicate to us through his twin sister?  How many times have we taken her guidance for granted such that we are unaware that she is speaking for him?

My colleague was right.  The twin relationship is amazing.

Letter to Our Son

Playing together

Dear Sweet Boy,

We wish for you to know how much your twin sister loves you.  We saw the twin bond when we came home from the hospital and you wouldn't stop crying until we placed your sister in the crib beside you.  But that was more than a year and a half ago.  Now, your sister has to work quite diligently every day to engage you.

We will never forget the time there was a flash of lightning and a crash of thunder that completely terrified your sister.  You were sitting and playing beside her and she leapt on you for comfort, knocking you over in a wide-eyed bear hug.  You cried and pushed her away.

When we took you to the pool yesterday, your sister tried to share her floating toys with you, but you shoved her away and looked in the other direction.  Mommy gave her lots of extra attention so she wouldn't be upset.

Today in the car your sister said, "Mama - HUG!  Mommy - HUG!  Kah-yee - HUG!"  She leaned her head forward to look at you in your carseat beside her, repeating, "Kah-yee - HUG!" but you ignored her.  We told her that you love her and hug her, too.

Today we went to the Children's Museum and you were not happy.  You did not want to be there.  You did not want to take off your shoes and play in the toddler area.  Mama put you on a riding toy, and you relaxed enough to ride.  Your sister rode behind you on another riding toy.  But when you screamed Mama took you off and held you, sitting cross-legged in the middle of the play area, squeezing you tightly to calm you and whispering the alphabet in your ear.  Your sister was watching, and we told her to go play.  But she had one hand on your riding truck while sitting on hers.  Then another little boy ran to your truck.  Your sister forcefully said, "No, Kah-yee truck!" (which sounded more like, "No, Kah-yee guck!") but the boy rode away, knocking her hand off the handlebar.  You sister turned to us with despair in her eyes and said, "Kay-yee guck!" and burst into tears.  We had to console her, telling her she was a good sister for saving your truck for you, and that it was okay for the other little boy to ride it because you no longer wanted it.  She was absolutely devastated.  You wanted to leave and so we did, despite the fact that your sister was trying to help and she still wanted to play.

Then, today during nap, neither of you went to sleep.  What did we hear from your room?  Your 20-month-old sister reciting the most of the letters of the alphabet in order, and you saying ah  in between letters.  When she got to the letters D, S, and Z, and you tried to say the actual letter sounds she clapped and cheered for you just like we do.  This was the first time we ever heard you two have a conversation.

Your sister loves you so much.  And you love her, too.  We know this because you crawl after her across the house at least once each day.  We know this because lately you allow your sister to touch you.  She patted you on the shoulder the other day, and while you seemed to ignore her, you didn't push her away.  That made her smile.  You don't appreciate it when she names and touches your nose, ears, eyes, mouth, and hair, but you allow it to be.  And there was that time you both sat on the couch watching a Brainy Baby video and she lay prone with her head on your lap, and you let her stay there for a few minutes without moving.  Even more recently you allowed your sister to play with your favorite stacking toy with you - you started taking turns with your sister!  You accept her in your space, and you are learning to share your favorite objects with her.  She often shares her food with you by leaning over and putting cut up bites on your highchair tray, which you take and eat without eye contact.  We almost fell on the floor the first (and only) time you leaned over and handed her your fruit!  These are the moments that give us hope.  These are the moments we know you have a connection that we cannot begin to understand; your sister must feel it because it is not often seen.

Dear child, we just want you both to be able to communicate and feel loved by each other.  We want you to be each other's best friend.  We hope, with all our hearts, that one day you will be able to tangibly love your sister back as only a twin can.  In the meantime, we are doing our best to fill in the gaps.

                                                                                        Love,
                                                                                        Mama and Mommy

A New Toy

Every day that we go to the children's rehabilitation center for physical and occupational therapy, I am grateful that my children are doing okay.  I see parents wheeling older children with severe disabilities out of the hospital elevator.  I glimpse fatigue behind their smiles and hellos, and I don't know how they do it.  My son is getting a little too heavy for me to carry for any length of time; however, he is able to stand and he will eventually walk.  He is making progress.  I can't imagine having to lift him ten, twenty years down the road, as some families do.  I interact with other children and families in the waiting room, which now feels like a second home.  Some kids are way ahead of my son.  My son is way ahead of some other kids.  I feel okay.

Then we go to a playdate at another family's house.  My daughter is excited by the train table and pushes the train along the track.  The little boy stands beside her and connects more magnetic train cars.  I chat with his mom and watch my son repeatedly crawl the perimeter of the rug.  Around and around he goes, looking straight down, forcing his sister and her new friend to step back as he barrels through their legs.

The other mother and I take out different toys.  We show my son all sorts of fun things to do.  He ignores us.  He is not interested.  He keeps crawling.

Then I see it.  A spinning/stacking toy in the playroom corner.  I bring it to my son and he looks, he smiles, he reaches out to play.  He takes the spinner and sends it spinning down the pole.  The other mother is surprised.  It took her two-year-old a long time to learn how to do that.  My son is engaged, happy.  Then he misses the pole and yells out of frustration.  He persists.

The family of the child I tutor cleaned out their playroom and generously gave us a toy kitchen and kitchen set.  My ecstatic daughter played with the kitchen all afternoon.  My son blatantly ignored it by refusing to look in its direction.  I cleaned an old easel given to us by a friend, and set it up.  My daughter eagerly colored with markers at the easel.  My son did not  give it a momentary glance.  So we caved.  We went to the toy store to buy him the spinning toy.

We got there at closing time.  I left my family in the car as I ran, breathless, into the small store.  A father was inside with his children.  I described the toy to the saleswoman.  "Spin Again!" she exclaimed, and led me to the back.  I felt an awkward need to explain, and started rambling.  "I'm sorry I know you are closing and we just got here but this is a toy that my autistic son got excited about at a playdate and he actually played!  We have to get it for him!"  She just smiled at me.  The other father stared.

Wait, what did I just say?!  I heard the words "my autistic son" come out of my mouth and I froze inside.  He hasn't been formally diagnosed.  It may not even be true.  We are preparing for the worst and hoping for the best.  The words felt strange, and shocking, and... oddly okay.

I thought I was supposed to feel sad, or angry, but it just felt normal.

So my son played.  Finally, he was happy with something new.  Something different he allowed in his space, something interesting to him.  He enjoyed quality evening playtime with his mommy, just the two of them, spinning disks down a the pole.  Great for developing his motor skills, great for social interaction and turn taking.  Most importantly, it grabbed his attention, and he wanted to play.

Maybe he is happy crawling the perimeter of rugs.  Maybe he is happy ignoring other kids and toys and crawling to the door and back.  He loves stacking toys, familiar books, and now spinning disks.

I brought the Spin Again to our next appointment at the children's rehabilitation center.  My son's occupational therapist wanted to see it after his session.  Another child in the waiting room wanted to play, and grabbed the spinning disks with excitement.  After my son put a disk on the pole for his therapist, he looked at the bigger girl grabbing more of his disks and he decided that he was all done.  So while the girl played with his new toy, he quietly crawled all by himself to the exit door.

And that was okay.

First Words

Our son decompressing in his ball tent.

Our son said his first words.

We were out at dinner a few weeks ago, which typically involves our son eating quickly and then having no patience to sit at the table while the rest of us eat.  So dinners out usually mean that I wolf down my food and I take him outside for walks while my wife and daughter finish their meals a bit more leisurely.  I like this arrangement because then my wife pays the bill.

Clearly all done, our son turned to me in agitation.  He raised his arms to be picked up out of his high chair, and I wondered at which volume his distressed "AAAAH" would sound this time.   His mouth opened, and a moment later the sound followed.  "Mamamama UH!"

Mama up.

Time swirled around me as I lifted him to me and hugged him close, tears in my eyes, staring dumbfouded at my wife across the table to make sure I wasn't dreaming.  She nodded, smiling.  She had heard it, too.  Oh, what a moment!

I hugged him and squeezed him and wanted to celebrate right there but our son wasn't sharing this stop-time experience and wanted out.  Miraculously we were all ready to leave.  Our slowest eater was finger-painting her face with her condiments.  I put my son in the stroller and wiped ketchup off my daughter's hands and face, which clearly transferred to the wipe but didn't seem to be washing off her skin.  "Bath night," I thought.  I put her in the stroller, and pushed it outside, our family together, still rejoicing over this new development.  I couldn't stop smiling at our little boy.

Then my wife said, "Look at her."  I glanced at our daughter and touched her red cheek with alarm.  "That's not ketchup," I said. "Those are hives."  Her face had broken out in red, swollen welts, the rash on her face around her mouth, on her cheeks under her eyes, and down her legs.  We buckled the twins in their carseats and raced to urgent kids' care.  (Our cheerful little girl recovered over the next half hour and was sent home with a dose of children's Benedryl.  Turns out she is allergic to pineapple.)

Our son spoke his first words.  His sister, with her outgoing personality and, in this case, allergic reaction, forever steals his thunder.  But not this time.  He spoke.  He knows that words are used to communicate.  He understands that he can use words to get what he wants.  He accepts that he has to put his lips together to make the "m" sound (something that does not come easily or naturally for him) and he knows his mama's name and the meaning of "up."

He has been paying attention.

Ears

Playing with bubbles during a speech session

Our son has played with his ears since birth.  We chuckled about his quirky habit.  We had his ears checked numerous times, and his previous pediatrician said everything was fine.

Our Florida pediatrician said everything was NOT fine.  She sent us to an Ear, Nose, & Throat (ENT) doctor.  Our son did not like the visit. They were unable to complete a formal hearing test because despite my best efforts my son was uncooperative.  The otolaryngologist did remove ear wax and determine that he has significant and constant pressure in his inner ear.  (Was that why he screamed the entire flight home on our last airplane journey?)  They recommended putting tubes in his ears (a bilateral myringotomy) to relieve pressure.  With the tubes he would not be allowed to get water in his ears, BUT they could custom-make ear plugs for the water.  I signed the surgical paperwork and scheduled the procedure.

A reminder to dress warmly because the waiting room is cold appeared in two different places in the paperwork.  They also let me know this in person.  So at 6:30 am the following Wednesday I arrived at the surgical clinic, layered in t-shirt and fleece, my kids in t-shirts, sweatshirts, long pants, and socks.  All of the elderly patients and their families sat in the waiting room in their winter jackets and shivered.  We undressed, because we have Boston blood.  Seventy-five degrees Fahrenheit is apparently frigid to true Floridians.

Prepping your child for surgery in the operating room is not easy.  My job was to keep him calm while they swaddled him tightly, pressed adhesive sensors and connected wires all over his body, and covered his face with a gas mask which caused him to scream until his eyes rolled into his head with anesthesia-induced sleep.  It left me trembling all over.  I sat in the warm waiting room with my daughter for an incredibly long 15 minutes.

The nurse retrieved me when they were done.  I was impatient to get to my son, but she kept me out of the recovery room, trying to tell me what to expect when she opened the door.  "It's normal for kids to cry as they regain consciousness," she began.  I rushed into the room, to find a nurse struggling to hold my son.  His eyes were scrunched tightly closed; he was screaming and flailing and kicking and arching.  I ran to him, and held him against me while he fought me with every muscle of his being.  "It's okay, you're okay," I murmured over and over while squeezing him tightly.  My daughter sat in the stroller, soundlessly watching.

Finally my son opened his eyes, saw my face, and stopped howling.  He stilled, crying more quietly.  I snuggled him, praised him, and put him in the stroller.  "This is all very normal for kids post-surgery," the nurse reassured me.  He had bruises on his arms and legs from all the thrashing.  I was relieved it was over.

Two days later, my son woke up with his hair plastered to the side of his face.  Sticky gunk.  Thick yellow wax.  We went back to the ENT.  It wasn't wax.  It was PUS!  (insert retching sounds here) Our little boy had a terrible ear infection.  The doctor acted like everything was status quo.  "Does this happen often after getting tubes?" I asked.

"No," he admitted.  "This is not typical."  He prescribed a ten-day course of antibiotics and ear drops.

Two weeks later my son's ears were re-checked to be fine.  That was a week ago.  My son has been fussy this week, not wanting to be held, fighting every time we pick him up.  I took him to the pediatrician again today because again I saw him pulling on his ears.  She prescribed another course of antibiotics for this latest ear infection, and said that that it was a good thing he had the tubes or else he would be in a lot more pain.  She reminded me to call the Ear, Nose, & Throat doctor to let them know he has another ear infection.

I don't understand why our son continues to have ear infections after getting tubes.  I don't understand where all that fluid comes from since he wears his custom-made ear plugs every time he is near water.    Thankfully, my son is so sweet when it is time to take his medicine.  Although he doesn't like it, he allows us to give him ear drops three times each day.  And he willingly opens his mouth twice a day to swallow the liquid antibiotics.  I just wish it weren't so routine.

17 Months Old: Global Developmental Delay

My son at the local children's museum

I am tired.  And overwhelmed.

When your beautiful little boy is in a room being assessed by a clinician, and you see him yell and throw every object placed before him, a little piece of you shatters.  But he's angry, you want to say, because he wants to finish reading the book you took away.  But now you see your son as  the observer sees him, and the deficits are profound.  Please please please, you mentally beg your son, engage with the toys.  But your son is not interested right now; he wants out of the chair and out of the room.  He screams loudly.

The neurologist gave us a letter of referral.  Five months of intensive physical therapy, occupational therapy, and speech services, two to three times each week, with a followup neurology appointment scheduled in April to determine progress.  And next steps.  And then a diagnosis.  It's all a jumble of words.

Lots of phone calls.  A visit to the pediatrician for additional referrals.  More intake appointments.  The occupational therapist that tests our son says he has an immature grasp and delayed fine motor skills.  She wants to see him two times each week.  The physical therapist determines that he has "loose joints," and that his muscles are working twice as hard as is typically necessary to move.  She wants to see him three times each week.  When we outright ask the speech therapist where our son is with language development, she equates his language level to that of seven-month-old baby.  She will see him three times each week and wants his hearing tested.  Language and cognition are so intertwined at this early age that I am having difficulty proving to everyone that my little boy is cognitively fine.

None of the care providers will say for certain that our son will have a positive outcome with intensive therapy.

I was given instructions to begin "crawling boot camp" at home.  My son first needs to learn how to properly crawl.  The physical therapist showed me how to position him correctly when he is moving, and how to readjust his body into the correct position.  She showed me how to manipulate his surroundings to ensure that he has to lift himself up.  She does not yet know how stubborn my son can be.

It's a lot of work - the phone calls, the appointments, the therapies I do with both children at home, let alone the daily grind of just having twins!  Recently, I stopped attending play groups with other parents because it pains me to see my children with other children.  When I see other people's typically-developing toddlers I mostly see my own children's deficits.  Plus I have difficulty socializing with other parents because while their toddlers run around and play, mine need one-on-one support.  Admittedly, as the weeks and months pass, my son, while making small gains, seems to be falling further behind.

In my house, we celebrate every success.  Last week my son learned to clap, and Yay(!) we clap with him.  While my son cannot yet walk, he can now turn a corner while riding his little truck - yay for mobility!  My son loves books and is willing to read more than just his favorites over and over - yay for something new!  My son can now put blocks back in the bin -  yay for helping Mama clean up!  My son is willing to eat new things if I shove a piece in his mouth first and he accidentally tastes it while spitting it out - yay for fish!  My son is babbling da-da-da-da all the time now - yay for not screaming!  My son loves to be serenaded - yay for sitting on the exercise ball for core strength exercises while Mama sings to you!  My son is hyper-focused on musical toys - yay for happily pushing the button that plays the alphabet song fifteen times in a row so Mama can take a break.  My son suddenly has more facial expressions in his repertoire - yay for helping Mama and Mommy understand you!  Yay for your adorable sense of humor!

My son is gentle, and funny, and he laughs a lot.  He is easily excitable.  He is mostly happy, sometimes frustrated, very sweet, and comfortable with our daily routines.  He sometimes spaces out.   He sometimes cries uncontrollably for no apparent reason.  He clearly has significant motor and communication delays.  He does not yet stand, but he sits and makes eye contact.  He says "ah" and "da da da" and he closed his mouth and said, "Mmmm" for the first time yesterday.  He does not look where you point, and he does not often mimic, but he does respond to his name.  He belly-laughs when you repeat a word he thinks is funny.  He no longer ignores the short Baby Signing Time video we watch daily. With prompting, hand-over-hand support, and multiple scenarios in which to practice, one time this week he signed "more" appropriately and on his own.  My son thrives in quiet spaces.  He is easily overwhelmed in noisy restaurants or crowded events.  He splashes, flaps, and bounces so gleefully in the bathtub, and he snuggles so sweetly before bed.  He knows how to brush his teeth and loves to have his hair combed and scalp gently rubbed.  His crib is a peaceful, safe space, and he smiles contentedly at nap or bedtime.

Maybe my son will eventually catch up.  Maybe he won't.  But we will continue to celebrate the small successes because for him they are enormous.