My So-Called Sensory Life

Today’s gift: my daughter.

They say every mother should have a daughter and I’m so blessed and lucky to have one.  We were thrilled when we learned we were having girl-boy twins:  a daughter and a son.

As twins, J and M are two peas in a pod in many ways.  J is her own girl though and also very different from M.  Of course, the main difference — J is a typical child (that is, she doesn’t have M’s sensory needs and other issues; though she does have one health issue we have to follow).

My blog focuses on M but because they are twins, I often find that I can’t write about him without writing about her.  They shape and influence and complement one another in so many ways.

Today, though, is J’s day.  I step back and admire, appreciate and love her for the amazing person she is.  J has a huge heart.  J is a deeply sensitive, emotional girl.  She is also passionate and colorful and dramatic and artistic.  She is kind and caring.  She is smart and beautiful.  J is patient.  She loves to dance and sing and loves reading and math and school.  She is a loyal friend and a great student. She’s an amazing and incredible daughter, granddaughter and cousin.  And she is the best sister anyone could want.  She’s a dream come true — literally.

J is growing up beautifully though sometimes my heart aches because things can be hard because of M’s needs (though she never complains).

Today I celebrate the gift of my daughter with as much joy as the day I met her.

I love you so much J!

I have had many requests about today — The Big Show Day.  Thank you all for your interest and concern about M.

Without further ado,  I am happy to report that it was a smash success for M (and J!)!

Phew!!!!!

I’m emotionally drained (in a good way).  In fact, I almost can’t blog about it because I’m wiped out.

Here are the broad-strokes:

1.  M woke me up with “Mom, it’s Show Day!”

2.  M looked very handsome in his white shirt (again) and was happy and great and well-behaved all morning (at home and at school).  His sensory needs were in check and he was in a very good calm place.

3.   Fast forward to 10:15am — The curtains open, and the show begins.  The opening:  M greets the crowd (all alone, with a microphone)…and… he was perfect.

4.  For the next 45 minutes, M participated in all the songs without any assistance on stage and he held himself together for the entire show and one encore.  He was grooving and dancing and participating in all the parts.  He smiled and laughed and enjoyed himself.  Yes, it was tough at the end and the encore surprised him, but beyond some fidgeting and some small movements, he performed like (or even better than) the typical children.

M amazes and surprises me all the time with his strength and passion.   Today, he taught himself a valuable lesson:  he proved to himself — and  everyone –  that he can do anything if he sets his mind to it.  And that is a gift we can all share with him.

Thanks to everyone at school, home, online for being part of today. You were all there in the audience cheering alongside me this morning.  : )

A small voice woke me up at 6:00am today.

“Mom can you button my white shirt?”

I turned to see M standing next to the bed, fully dressed, with his IMPORTANT white shirt on for today’s school musical.  Chest puffed out, and with an enormous smile, my boy was ready to knock their socks off at the first of his two musical performances.

The children all wear dark pants and a white shirt for the two shows.  Clearly, M revers his Great White Shirt and plans to wear it for tomorrow’s show and then again on Friday.  He also wore it yesterday which  means he’ll wear it 4 out of 5 days this week.

The Great White Shirt is a nice quality boys’ 100% cotton button down oxford from The Children’s Place.  It’s very soft according to M and he loves the way it makes him look like Dad.

All fashionistas know that a classic white shirt is a wardrobe essential.  This  “must-have” has been confirmed by everyone from Oprah to InStyle to TLC’s makeover show What Not To Wear.

I love fashion but am not a slave to it.   After this week, I’ll never look at a white shirt the same way.  Clearly, M appreciates the importance of his white shirt more than any fashion addict ever will — to him, it represents one of the most important moments of his life so far.

Today, I’m giving The Great White Shirt a round of applause; at tomorrow’s musical, I’ll give it a standing ovation.

In my post Serenata, I mentioned M practicing songs for his class concert.    Well, the day is upon us.  Actually, days.

M has a solo speaking part in addition to the group songs.  He is thrilled and practices his speaking part and the songs constantly (along with twin sister J).

Unfortunately, M just realized that instead of one show, M and his peers will perform two shows.  The first show is tomorrow (for the school and staff) and the second show is on Thursday (for parents and family).

M decided this morning he only wants to do the Thursday show.  I’ll spare you the details of how he delivered this decision and what he said — but let’s just say it concerned me.

And so…his declaration set off a chain reaction of emails to the school, teacher phone calls and of course, a social story (see above photo).

I make social stories for M a lot.  These visually based tales transform an event into something M can hold in his hands.  Usually, our stories contain fun pictures and they break down the details of an upcoming experience or trip or party.

After breakfast today, M begged for a “Performance” social story.   Picture this:  I have not had my coffee or my breakfast. I’m in my pj’s with peanut butter on my hands but I quickly shift gears and grab my pen and paper.

Thank goodness for social stories — they are a real gift and a real-life solution for our family.   M and I had fun writing the social story together this morning.  M relaxed (so I did, too).  M felt empowered.  I did too — especially after talking to his teachers by phone after he left for school.

We take the saying “A picture is worth a thousand words” very literally in our home.  We are optimistic that our photos of M’s performance this week will tell a beautiful and successful tale of a brave, strong and happy boy.   I plan to use one in a future social story.

M can cross his own fingers! He’s been crossing and uncrossing on both hands — individually and simultaneously — again and again.

The simplicity and lightheartedness of this gesture hides the deeper meaning  for M (and me).

M’s fine motor skills are very poor.  They are worrisome to the doctors and to school and we are all working to assist him.  Fine motor skills include writing, buttoning, drawing and related tasks and activities.  Children with sensory integration disorder, autism spectrum disorders and other developmental delays often struggle with their fine motor skills.

M’s struggle makes so many things frustrating including writing his name, doing homework, holding a fork, crossing his fingers.  In the past, our little guy had to use his right hand to manipulate his fingers on the left hand to cross and vice-versa.

Crossing one’s fingers — curling the middle finger over the index finger– is a universal symbol of good luck.

For M, and me, it symbolizes something akin to climbing a mountain.

I’m sure you are familiar with that delightful, involuntary reaction when you first arrive home after a trip.  I call it the “ahhhh” feeling — a mix of appreciation, relaxation, safety, even serenity.  Multiply that feeling many, many times and that is how M feels.

Two hours ago we returned from a short family trip that included a mini-getaway for me and my husband (without the twins).

M can not contain his joy.  He continuously tells me how happy he is to be back home and how much he loves being here.

His gratitude for all the details of our house — his bed, his rug, his room, his music, his routines — is exaggerated, but in a wonderfully unique and positive way because he has sensory processing disorder.

Observing M before bed, I reflect on how much more I appreciate our home because I see it through M’s eyes.  (And, for the record, I already really appreciate it: I lived in a one-bedroom NYC apartment for ten years — with a roommate!).

Tonight’s glimpse into M’s intense world is a gift — an invitation for us all to reflect on the foundation that literally grounds us because there’s no place like home.

Do you have a favorite letter?  Once you are a parent, you interact with the alphabet like never before. Prior to M, I never thought I would appreciate a single alphabet letter so much, but I do.

M embraces my time tested method of making an inanimate object a thing a child adores simply by adding a “y” to the name.   I started this silly linguistic frivolity when, as an exhausted Mother of Twins, I could not muster even an ounce of creativity to engage M and J in the dreaded Tummy Time.  Fast forward to today, M’s John Deere Tractor is “Johnny” (“Here’s Johnny”).  His favorite car pillow is “Car-y.”  His beloved stuffed yellow Labrador dog is “Lab-y.”   His black stuffed puppy — “Blacky.”   And so on.

Secretly, I love listening to M refer to his toys’ “y” names.

Hands down, my favorite M use of “y” is and always will be — Mommy.

Today’s gift — time for me, me, me!

I am grateful beyond words to be the Mommy of M and J.  They are my greatest joys.

Today, however, I celebrate the rare gift of special time for Mommy.

Thanks love-bugs!

I am a New York City girl — always have been, always will be.  When we first met, I told my husband he never had to worry about another man but that he had to accept my lifelong love affair with NYC.

Dreams come  true in NYC.  It’s powerful, vibrant and energizing.  There is something about this city that you can not find anywhere else.

Now that the twins are seven, they understand how much Mommy loves the city.  Any time anything to do with NYC is on television, the radio or in a movie, the kids enthusiastically scream and yell and  find me to hear it/see it (even if I am in the shower or another compromising situation).

M’s obsession with vehicles fits nicely with my NYC obsession.  In fact, M loves NYC (even though you would assume that sensory children like M could not handle the massive stimulation — he has done well there).   I can only hope that his sensory issues don’t ever prevent him for enjoying new experiences.

It’s a gift to be able to share my first love with M and J.  I see things through their eager eyes and experience the city in new ways.   I can’t say if they will share the same lifelong love of NYC but I can dream that it will be their first crush.

It is school vacation week.

I love having the twins home with me but it can be hard for M because he does not have a set schedule (compared to school).   I wear multiple hats this week:  teacher, O.T., P.T., manager of his sensory breaks/diet, and of course, Mom-the-Entertainer/Obstacle-Course-Builder/Librarian/Chef — you get the idea.  It’s a labor of love and all the effort and the work and the occasional bumps make each day unique and special.   So far, the twins tell me that “Every day is our favorite day of vacation!” and their rating is a “Thumbs up!”; I feel the same.

I own time when the kids are on vacation.  Everything revolves around the three of us.  It’s glorious and reminds me of our days as “The Three Musketeers” — that special time when the children were small and we were always together.

I savour each day; the world shrinks and our trio celebrates all day long.

Every day, especially today, I am showered with their gifts.  I overindulge in kisses, hugs, and tickles because I know this time is as fleeting as the week.