Thursday, July 19, 2012


I stood at the kitchen sink washing containers from Miss J and M's lunch boxes.  As I did, I watched my children playing in the backyard.  Miss J was swinging on the rope swing.  I could hear her calling to her brother, "M, watch me!" as she would leap up, clutching the rope as she glided through the air.

M ignored her.  He was busing pulling leaves from the bushes and trees.

"M!" Miss J called again, "Would you please watch this?"
"No" M replied flatly.
Miss J walked over to M, yanked the collection of leaves from his hand and threw them on the ground.
M began to cry.  Loudly.  Miss J stomped off and pouted.

Thankfully, at the same moment, I had finished the dishes and the burgers I had on the grill for dinner were done cooking.  I plated the food and called the kids to the patio for dinner.

M dove into his meal.  Miss J picked at hers, making no effort to hide her irritation with her brother.

"Please eat your dinner."  I said, hoping she would catch the "I'm-tired-and-not-in-the-mood-for-this-now" edge in my voice.

There was tension in her face.  Her cheeks were red and tears brimmed precariously at the edges of her eyes.  I knew that one blink would send the first of many tears streaming down her face.

She moved her pasta around her plate with her fork, putting nothing in her mouth.

"What's the matter?" I asked.
Miss J stared me down.
"I'm sick of him!" she spat.  "I tried to get him to play with me and he wouldn't.  I wanted to show him my new trick on the rope and he wouldn't look.  He's more interested in the stupid leaves than playing with me!  I just want a normal brother.  Or NO brother.  I am so sick of THIS brother."

It had been a long day.  Mr. A had been working late each evening and I had been charged with the evening routine for several nights in a row.  This kids were tired and crabby and so was I.  The intense heat and humidity wasn't helping, either. My patience was wearing thin.

I stared back at my daughter, prepared to serve up one of many speeches that were ready to go on my tongue.  I could give her the "Who-Are-You-Fooling-This-Could-Be-So-Much-Worse"  speech or my "Do-You-Think-He-Asked-To-Be-Born-This-Way?" speech or even the "What-If-You-Were-The-One-With-Special-Needs?" speech.

I was ready to lash at her and tell her that everyone in the family had already watched her do her rope trick and that we were tired of it and that she didn't need a constant audience.I was ready to tell her that if her brother didn't feel like playing with her, so what?  Play on your own or go find a friend to play with.  I wanted to tell her that she could be really annoying at times too.

I wanted to tell her that there were people in the world with bigger problems and that she should thank her lucky stars that she had a roof over her head, clothes on her back and food in her mouth. I wanted to tell her she was better off than most.

I really wanted to lay into her with the classic, "Quit your crying or I will give you something to cry about!" line.

I didn't say any of that.  I gathered plates and slammed down forks and began to make my way into the house.

I quietly said to her, "Yes, you are so right.  I will find a home for your brother so that you are not inconvenienced or upset or embarrassed by him.  Okay?  Will that make you feel better?  I'll just get rid of him so you won't have to deal with it."

Not my proudest parenting moment.

I understand where she is coming from.  I know she loves her brother but that she also wishes she had a sibling she could truly play with and talk to.  I know she is grateful for what she has and understand that living with a sibling with special needs constantly spins her world in different directions.  I know her patience is not limitless.

I should have told her all of this, but my own irritation and fatigue were wearing me down.

Instead I left the table, my fingers trying to rub away the headache that was working its way into my skull.

To the people who feel they know me and say, "You're always smiling!  You have such a positive attitude!"  No, not always.  I bark and I bite and I break.

Wednesday, July 18, 2012

The Walk.

While many kids are swimming in pools or attending camp or lounging around on lazy summer days, M attends summer school.  Three hours per day, five days per week for five weeks. On days where Miss J goes to day camp and plays with friends and eats her fill of popsicles, M practices his math and reading skills.

I have no guilt about this since school is something that M has always loved.  M loves the company of his peers and the attention of his teachers and therapists.  When you ask him what he enjoys about school, he will smile and tell you, "doing work."

M loves going to school so much that there have been tears shed on weekends and school breaks because he misses school.

Each day, I drive M to school.  I purposely park a little further away than necessary so that M may get a morning walk in. His excitement builds as we walk and he sees the school buses pulling in to drop off other children.  I hand him off to his aide and kiss him goodbye and tell him I will see him later.

We do this every day.

As I held M's hand, I watched the other children run past us on foot or on zip by on scooters.  I saw children and running and laughing and heading to school without their mothers holding their hands to keep them from tripping and landing in the street..  It was a little jab in the heart.  Not because I don't enjoy walking with M to school...I do....I would just love to see M doing these everyday tasks on his own.  Without need for help.

I got an idea in my head and talked to the crossing guard and M's aide.  I told them that the next morning, I would attempt to let M walk the short distance to the school on his own.  I would stand at the end of the street and watch M walk to the crossing guard.  She would cross him and his aide would be waiting for him on the opposite side of the street.

It sounds simple enough, but for M, this was a huge challenge.  For one, M is not exactly the most steady boy on his feet.  Add to that a backpack filled with lunch and swim gear and he has to adjust for the added weight.

M must walk about a hundred feet on his own.  Again, this is a challenge as M loves to stop and examine every stick and pebble along the way.  Unaware of the laws of physics, M will often forget about the pack on his back and bend over to pick up a treasure, propelling the backpack forward and sending M flying to the ground.  In order for M to walk, on his own, safely, he must remember not to stop to pick things up.

He must also remember not to speak to everyone he meets along the way.  M has no regard for strangers.  To him, everyone is a friend.  He thinks nothing about stopping every random person for conversation and a possible hug.

And finally, M must be able to navigate the sidewalk with his limited vision.  Poor vision and zero depth perception make it difficult for M to discriminate between the sidewalk and the street, making it easy for him to loose his footing and slip off the sidewalk.

That short, seemingly simple, walk presents many obstacles.

The next day came and I stood at the corner and said my goodbyes there.  I kissed M and reminded him of his new task.  He looked at me and smiled.

"I go by myself.  Not pick up sticks.  Not fall down."  He told me before turning and walking away by himself.

He stopped a few times along the way to see if I was still watching.
"Mama?" he'd ask, as if he was unsure of why he was alone.
"Keep going, bud.  Keep walking to Miss G."

M turned again and continued on.

He wobbled a few times, but he did not fall.  He did not stop to pick up sticks and he did not talk to anyone until he reached Miss G, the crossing guard.  Though I was standing quite far back, I could hear his hearty, "Hello, friend!"  She crossed him safely and his aide was there to greet him on the other side.

M turned to wave to me.

It may seem small.  It may seem simple.  But in our world, this is HUGE.

Tuesday, July 17, 2012

Mother Doesn't Always Know Best.

I stood in M's room, putting away a stack of laundry.  As I glanced around, I decided that M's room needed a make over.  The dresser which held M's clothes was leftover from Mr. A and I's newlywed years.  It is a cheap piece from Ikea and it was not aging well.  The drawers were constantly stuck and one wobbly leg threatened to break away from the piece entirely.M had outgrown the chair he'd received as a toddler.  The chair sits low to the ground, making it difficult for M and his long legs to stand up out of.  His quilt, also from the toddler years,  has been through dozens of wash cycles and was beginning to fade and fray at the edges.

Yes, M's room needed help.

I purchased a new quilt.  It is cotton with stripes of rich navy, brick red, ecru and brown.  It is handsome and is well suited for a boy who is turning eight.  I stripped and refinished a dresser that once belonged to M's great-grandmother in a dark satin navy finish.  I happened upon a wonderful vintage chair at a garage sale constructed of solid wood with sturdy arm rests that will be easy for M to get in and out of.

While M was away at summer school one day,  I got to work on the room.  I rolled on a coat of soothing taupe paint and moved in the new dresser.  I switched the bedding and organized the bookcase and toys. M has recently developed a fear of the dark, so I placed a funky lava lamp on the dresser to serve as a fun night light. Since M's vision is so poor, I was mindful to keep everything in the same spot so that he would be able to navigate the room easily. I managed to finish putting the room together before M was due to arrive home.

I brought him into his room.  He smiled and told me he liked it.  He noticed the new dresser and immediately went to lay down on his new bedding.  He was happy.

That night, I settled M into his bed and turned out the lamp and switched on the lava lamp.  M freaked out.

"No light!" he screamed.  "Turn off!"
I turned off the light.
He screamed again, "Too dark!  Light on!"
I switched the light on again.

M continued to cry.
"Move that out!" he cried, pointing to the newly painted navy dresser.  "I want mine!"
He tossed the pillow with the new sham to match the quilt on the floor.  "No pillow!"

This was unusual for M.  M has always been a great sleeper.  Unless he is sick, I rarely hear from him once I have turned out his light.

This wasn't a tantrum or the antics of a child trying to avoid bedtime.  Tears continued to stream down M;s face and it was apparent the sudden changes I had created in his environment had been too overwhelming for him.  I'd sprung too much change on him and had not respected his space.

I'd looked at the room and saw a tastefully decorated space for a little boy.  I saw modern color combinations and vintage pieces organized in harmony together.

M saw a dresser that was not his.  He noticed a familiar chair was missing. There was a different wall color and a new light that glowed an eerie orange.  The quilt that I had tossed aside for being faded and shabby was interpreted by M as comforting in the well worn softness of the cotton and familiar in the scent of laundry detergent that clung to the fabric.  The change stripped comfort and familiarity from M and brought uncertainty and anxiety.

Mother doesn't always know best.  There is still more I need to learn about my son.

Monday, July 16, 2012


In a few short weeks, M will turn eight.Each birthday is a gift, a cause for celebration.  And each is bittersweet.

Don't get me wrong, I am thankful for every milestone, every inchstone achieved.  I am thankful for good health.  For his growth and development. His happiness. I truly am.

But with that joy and celebration and gratitude comes a sadness.  It is a heaviness not fully understood by those who have children who are developing typically.  Other mothers who are also members of this unique sorority understand what I am saying without my need for explanation.

M's birthdays are always spent with family and close friends at his side.  He enjoys the company of his favorite people at his side.  He loves blowing out his candles (a skill mastered at the age of six.) and eating a giant helping of cake and licking frosting from his fingers.

Through the years, we celebrated the day with M in a variety of ways.  We've explored the aquarium and have ridden go-karts and picked blueberries and dined on lobster rolls.  Each year we strive to find a way to celebrate that will make M the happiest.

M is happy and content and celebrating in ways he enjoys and with the people he loves.  I shouldn't ask for more.  But there is that piece of me that thinks about the milestones that have continued to elude M.  The gaps that widen between him and his peers.  I think about how he is getting older in years and wonder if there will be an age at which his development plateaus.  I look at him, impossibly tall and lean, looking older than his eight years.  I wonder what age strangers must think he is.  His excessive height accentuates his delays and awkwardness and I know that as he ages he is less able to blend in.  As another year of childhood passes and he is edging closer to adulthood, I can't help but worry.

While we strive to make each birthday celebration memorable for M, he remains largely unaware of the reason for the celebration.  He enjoys the company and the cake, but he lacks the understanding that the fuss is for him.  He doesn't count down the days until his big day.  He cannot tell me how old he is turning.  He's never asked for a specific present.  He's never requested a party or to invite other children over to celebrate.  He's never asked for a particular flavor of cake or for a character theme.  Planning his birthday is easy for me.  Too easy.  Easy in a way that makes me sad.

It is unlike Miss J, who months before her birthday is already deciding how she wants to celebrate and with who.  Miss J who carefully decides upon a party theme and activities and colors and food and favors.  A girl who gives thought to every detail.  She is like other typical children, giddy with the excitement of turning another year older.

M is my gift.  A gift, who at times, I feel compelled to tell others is not less than perfect, not a short coming, not a cause to feel cheated.  M is a collection of wonderful attributes and surprises, just like any other child.

And as much as I am full of gratitude, even though I appreciate everything I have received with M, there is a vein of selfishness that runs through me that cannot help but to want for more for M.  More for M and perhaps, more for me.

Monday, July 2, 2012

The Glory of Words

When M was a baby, once I had realized and accepted that I was parenting a child with special needs, I joined an online support group for parents like me raising kids like M.  The group became a lifeline that has carried me through some of my darkest times.

Recently another parent posted about her need for support in coping with her daughter's significant speech delays.  Her worry and sadness struck me. During the past seven years I have seen posts such as these many times. I too had shared my fear and worry about M's speech with the group.

For years, M was silent.

At his one year check up, the pediatrician went through the obligatory list of questions regarding infant development.

"Does he have any words?" the pediatrician asked.
"Not really." I responded.
He pressed on. "Does he say, 'mama?'"
"No."  I sighed.  "But he will try to make an "mm" sound sometimes."

When M began preschool at the age of three, he had but a handful of words and signs.  He was still unable to verbally put two words together, although he could create short 2-3 word sentences with his signs.  Most of M's words were approximations, only discernable when heard within the context of what he wanted. For example, "ba" could mean "ball" or "bottle".  You had to see what M was gesturing to in order to know what he wanted.

M was delayed in all areas and this was by far the hardest one for me to swallow.  I wanted to hear my son's voice.  I wanted to know what he wanted, what he was feeling, what hurt him if he was sick, what scared him, what made him happy. The silence ached within me.

It had been so different with Miss J. When she was an infant, she spoke her first word at seven months old.  By one year she was speaking in sentences.  By the age of two she was reciting poems and children's prayers in two languages.  When most toddlers were naming colors and counting, Miss J was reciting the correct names of all the bones in the human body.

I had Miss J...precocious and witty and so very chatty.  And I had M....a little boy whom I spent many hours trying to coax a single word from his lips.

In M's three year old preschool, he received Speech Therapy in a group of ten.  Not one single minute was given to him for individual or even small group therapy.  This contradicted everything I had been told and had researched about children with profound speech delays. I went toe to toe with the school and plead my case that M should receive individual therapy; that being serviced in a group of ten was not in M's best interest.

I was told that three years old was far too young to receive individual therapy and reap any benefit.
I was told that in this school, the only way they did it was in a group.
I was told that if M received individual time that it would "throw off the schedule" since everyone had the same minutes/group.

I was told no.

When M was four and it was time for his IEP (Individualized Education Plan) meeting, I made the same argument.  This time I did not back down.  This time I came armed with literature and statements from his private therapists and statistics.  This time I insisted that M receive some individual therapy minutes.

He was granted 15 minutes per week. Not much, but something to start with.

The next day I was picking M up from school and the Speech Therapist approached me.  She looked me straight in the eye and said,

"You need to understand that your son will never have true speach.  He won't speak in sentences.  He will not have speech that is intelligible outside the family.  His fine motor skills and vision are so poor that I don't think he could even use an augmentative communication device or type on a computer. You need to accept this."

She spit the words at me.  I might have gotten my 15 minutes of speech for M, but was clear in telling me what a waste of her time she thought that was.  It was clear that little was to come from M's individual 15 minutes since the therapist had already made up her mind about M.

I was angry.

I was afraid she was right...what if everything she said was true?  Was M never going to be able to communicate?  Was all the private speech therapy a waste of money?  Had all those hours of practice at home been a waste of time?

I despaired.
I cried.

And then I kept on.  And we sold our home and moved M out of that school and another one that offered M all the tools and help he needed to succeed.  A school that set high goals and worked with him to reach them.

M will be turning eight soon.  His speech is still quite delayed, but he speaks much more than many people thought he might.  He does speak in sentences.  Most often, strangers can understand him.  His vocabulary is extensive.  He is learning to read.  He does not use any sort of communication device and no longer uses sign.  He is always improving on his ability to tell me what he wants, what he is feeling, what he is thinking.  He is funny and clever.

A few days ago, I we were in the car.  Miss J and M were arguing about something in the back seat and, in frustration, Miss J smacked M. A very upset M cried out,  "Mama!  J hit me!  Call the police! Take me to the hospital!"

And while I should have made an attempt to stop my children's fighting, I could not help but revel in the glory of those words I thought may never come.