Friday, December 21, 2012

Does He Get Christmas?

"Does he get Christmas?"

This was a question recently asked of me about M.  The question is easy to answer, harder to explain.  How much does M get Christmas?  Enough.

I've written and scrapped this entry at least a dozen times.  I've thought about it and hopefully this explanation will be the one I finally post.

Does M get Christmas?  It is a difficult question to ask of anyone, as everyone will have a different interpretation of what Christmas is to them.  The faithful will celebrate Christmas as the miracle birth of a savior born to a blessed virgin mother.  Others will await the arrival of a jolly grandfatherly figure to deliver presents to boys and girls from around the globe.  Families raising children in homes practicing dual religions may mesh and meld aspects from each of their respective religions together to form their own unique blended holiday celebration.  Pagans will send holiday cards and atheists will decorate Christmas trees. The interpretations of what the significance of December 25th means are wide and varied, but I think regardless of who you are and what you believe, the season for most is a time of joy, togetherness, thankfulness and giving.

So to finally answer this question, perhaps not to the person who first posed it, but to myself:  Yes, M completely understands our individual interpretation of Christmas. M is very much an active part of our family's holiday traditions. He is excited for the preparations and happy for the celebrations.  M and Miss J bring Christmas to me as much as I hope to bring it to them.  Perhaps some will see this as simplified and perhaps watered down, but for me, it is just enough.


Tuesday, December 11, 2012

No Virginia, There Is No Santa Claus

The day Miss J matter-of-factly  told me there was no Santa Clause, I held my breath fir a moment.

And then I exhaled a big sigh of relief.

In my circle of moms, most have come to dread this day, knowing their child is stepping further from childhood.  Perhaps losing the Christmas magic. While part of me felt like I was turning my back on a fun tradition, this announcement from Miss J left me feeling like I'd been let off a very large hook.

I should mention that when Miss J declared Santa a fake, she was just three years old.

It was getting close to Christmas and Miss J and I were out running errands together.  One of our stops was to the grocery store to buy ingredients to make cookies.  We parked the car and as we made our way to the store, Miss J spied a Marine's "Toys For Tots" collection.  She eyed the Marine in full uniform and the large box of toys.  She turned to me and said,

"Oh, so there is no Santa?"

I was unprepared to hear that and sputtered and stammered and only managed to get out a surprised, "Huh?"

She repeated herself in the same matter-of-fact tone.

I looked at my girl.  "Why would you say that?"  I asked her.
She simply stated, "Well, if there was a Santa, there wouldn't be that, " a mittened hand pointing at the toy collection. She shrugged her tiny shoulders and proceeded into the store.

I said nothing but my mind was racing.  Do I confirm this?  Deny it?  What do I do?  I was not prepared for this! I decided not to do anything at that moment.  I decided that if she wanted to pursue the conversation, she would.

Once we were in the car, she asked me for the truth.  I told her.  I wondered if perhaps she might cry. I kept glancing in the rear view mirror to see if disappointment had crept upon her face.  The last emotion I was expecting, the one she nearly exploded with, was anger.

"You lied to me, Mommy?"  She glared at me.  "Why would you do that? That isn't Christmas."

I explained it to her, as best I could.  I apologized for making her feel tricked and foolish. We talked about Christmas and Hanukkah and tradition and folklore and magic and joy.  It was one of the most meaningful conversations I've had with her.  One I won't soon forget.

Hence my sigh of relief.

Before I was a mother I'd had always wondered how I would handle Santa and the Easter Bunny with my children.  Once I had Miss J, I hated lying to her.  I struggle some with religion, but I have always been involved in my church and the thought of taking a religious holiday and putting such a commercial spin on it really bothered me.

Honestly, when Christmas would roll around I would wish I were Jewish.  No Hanukkah folk heroes.  No over the top antics.  No telling my child that they would receive gifts only if they were good.  No explaining why the children residing in the more desirable zip codes were bestowed more gifts while other children received dollar store junk.  No trying to rationalize why some children would receive visits from Santa while those of other religions did not. (I grew up in a largely Jewish neighborhood and used to wonder, "Does Santa not like Jewish kids?"  I'm happy to report that my Jewish friends survived, unscathed, without the presence of a Santa figure in their youth.  None that I know of had to work that out in therapy.)

Now, after the confrontation from my three year old, I was let off the hook.  No more lying.  No more pretending.  No more games.

I did receive some backlash from other parents when they discovered my Miss J was a non-believer.  I was accused of forcing her to grow up too fast.  I was told I was robbing her of Christmas Spirit.  Adults would look at her and say, "But I am a grown up and I still believe in Santa." Comments like these annoyed Miss J to no end. Imagine how much easier it would be when people asked if my kids believed in Santa to simply say, "Oh, we're Jewish.  We don't do Santa."

And now that Miss J is ten do I feel like somehow the magic was lost? Would I go back and change it if I could?
No.
Not for a single second.

Is see the wonder on her face when she decorates the Christmas tree and when we make our Swedish rice pudding.  She is magic when she carefully selects a gift for each family member and painstakingly wraps it.  She is light when I hear her angelic voice singing the hymns at the candlelight Christmas Eve service.

And when the entire family is gathered in our little home at Christmas, with a fire roaring and a delicious meal on the table, she is joy.  This is what makes my girl the happiest.











Monday, December 10, 2012

Get Out Of My Uterus.

My uterus is not something I usually discuss with the general public.  I do not ask other women about their uterus or if and how they intend to use it.  Call me old fashioned.

I recently had an exchange with another person.  It went something like this:

Random Person:  "I heard a rumor you were expecting.  Is it true?"
Me:  "Um.  No."
Random Person:  "Oh good, because I am sure you already have enough on your plate."

Whoa!  Was I really a just a part of this conversation?  

I wish I had a pithy response.  I wish I had been quick with a witty retort.  Instead I just stood there, unsure of what to say.  My mouth was probably hanging open.  I fumbled through the awkward moment and left the scene. I should add that this person is not a stranger and I do not think this person made the comment with the intention of being hurtful.  Sometimes people mean well and the words come out all wrong.

I thought about this quite a bit and came up with some general conversational ground rules:

Rules
#1.  Unless you actually see a baby physically emerging from a woman, never ask if she is expecting.  Just don't.  Trust that if said woman is pregnant and wants you to know, SHE WILL TELL YOU. *

#2.  If  you forget Rule #1 and ask anyway, do not let out a sigh of relief and say, "Oh good!" if the assumed-to-be-pregnant woman answers that she is not expecting.  Hide your shock/relief/dismay and bite your tongue.  Bite until it bleeds, if you must.

And #3...this is a big one for me: If the assumed-to-be-pregnant woman is also the mother of a child with special needs, please refrain from comments such as, "You already have enough on your plate."

Telling me that I have 'enough on my plate' (which I will automatically assume is a direct reference to my child with a disability) is a euphemism for, "You are overwhelmed/overextended/unable/unwilling to take on any more."  It's an insult dressed up in pretty clothes.

Comments like this take me from zero to defensive in about a half a second. Let me share three facts:

#1.  What is on my proverbial plate is my business.  I've got it covered.  Trust me here.
#2. If you really must know, yes M is a portion of my plate, but he is not the entire plate.  Remember I am also parenting a preteen girl with a vein of snarkiness that runs deep through her prepubescent body.
#3.  I am a mother.  A full plate goes with the territory whether you have one kid or ten, young or grown, typically developing or those who have a long list of special needs.  Full plates and mothers have gone hand in hand since the dawn of time.  Look at Eve.  She had some intense stuff to deal with.

Please don't look at me and assume that I cannot handle more children or that I would not welcome more children into my life.   I can and I would.  And no, I am not expecting.

For the moment I am happily parenting two quite imperfect children whom I happen to love with every fiber of my being.  And I am very grateful that they love me and all of my imperfections.



Thursday, November 29, 2012

The Write Time

This blog, this story of mine, will celebrate a milestone in a a few short days.  This blog will turn one year old.

I  stopped writing over the summer, just before M celebrated the milestone of his eighth birthday. There was no long pauses between posts.  Entries came at a regular pace.  Stopping was sudden.  Abrupt.

I stepped away from the keyboard for a few reasons.  My main reason for stepping away from this blog was that I was unsure of myself.  I wondered if the blog had grown old. Stale.  Flat. 

Maybe it didn't feel natural.  Maybe it felt forced.  Maybe it wasn't the right time.

I never wanted the story of M to be a sob story...because certainly is not. I want this story to be an open, raw, honest portrait of what this life is like. I want to show the beauty, the fear, the challenges and the joys that all go along with raising a child with significant special needs.

As I took a break, I heard two things from people.  The first was, "Are you okay?  Is everything alright?  You haven't written in a while. Why?"  (Yes, I am okay and all is well.) The second was, "I miss reading your blog."

People missed reading about M.  That pleased me because I want to share his story.  I want people to get to know M through my words.

I am pleased that people want to read, because I do want to write and I have so much more to share. For me, it is 'the write time' once again.


Thursday, July 19, 2012

Snap.

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

Bittersweet

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.








Saturday, June 30, 2012

Baby Boy

As I was putting M to bed last night, he asked me to read a book to him.  Some nights he wants to be read to.  Other times he is far too tired and declines a book in favor of sleep.  "No book tonight, Mama."  He will tell me. He'll point and tell me, "Bed"" and will crawl under his blankets. This night, he selected his book and, as he always does, crawled into my lap.

M is nearly eight years old now.  He is tall and thin, standing at five feet tall and weighing eighty pounds.  Even still, when we read together in his room, he insists upon snuggling in my lap.   He barely fits and he pulls his arms and legs in tight in order to perch himself upon my legs.  I cradle his freshly shampooed head in one arm and hold the book with the other and I wonder for how much longer I will be able to hold his ever-growing body.

We read the book and I feel the heaviness of M's body as he begins to relax..  My legs are numb and I can no longer feel my toes, yet I am not willing to give up the tangled heap of arms and legs within the space of my lap.

I kiss his head and I tell him that he is getting to be so big.  I tell him about how tiny he was when he was a baby.  I tell him about how I used to hold him in the rocking chair and give him his bottle.  How I used to pat his back until he'd fall asleep in my arms.  

As I am speaking, I realize that I have never told M any of this.  I have never told M about what he was like as a baby;about how slowly he ate and how much he slept and how he rarely cried.  

Miss J loves to hear stories about when she was a baby.  Though she's hear my stories a thousand times, she still enjoys listening to me tell her about how alert she was, how she was a fantastic eater and spoke her first word at just seven months old.  How she was energetic and had little need for sleep and would cry to be taken outdoors.

I have never told M any of this because I am not sure of what M understands.  M's world is the here and now with little care for the past or future. He sees pictures of himself and tells me that the photo is of a baby, but he's never acknowledged that the baby in the photo is himself.

It doesn't matter.  Right now, I have M's attention.  M is calm and still and listening to my words.  It doesn't matter because M tells me, "I'm your baby, Mama."  This, he knows and that is what matters most to me.

Friday, June 29, 2012

Please Don't Lick The Magazines.

Have you ever had to tell your child, "Please don't lick the magazines?"  Or the windows on a school bus?  Or another person?  Have you ever had to tell your child not to bite the dog?

I have.  It comes with the territory of raising M.  

I am always looking for places in the community to take M.  Each trip is a chance for him to develop and refine his social skills.  I am teaching M as much as I can in hopes that one day, he will be able to do these seemingly simple tasks on his own.

We practice ordering food in a restaurant and giving money.  We work on remembering to say "please" and "thank you" and "excuse me."  We practice pushing shopping carts through busy grocery stores and picking items from a list.  We work on standing patiently in a line and using an inside voice.  

We practice appropriate social conversation and that it is good to say "hello" and "good bye" to the grocery store checker, but it is not appropriate to hug the customer standing next to you in line or to lick the magazines on the rack or open the candy bars at check out and start eating them. (My son needs to be taught these things.)

It is good practice for me as well.  It is good for me to expose M to different situations, different venues.  It is important for M to experience changes in routines and to alter expectations from time to time.  It is practice for me on what strategies to use to cope with public (and frequently loud) meltdowns.There is a sense of pride for all of us when we've experienced success in public settings.  A sense of accomplishment.  Perhaps even a lick of "normal." 

Outings are rarely easy and can be insanely stressful. There have even been a few times when I have secretly wished I could pretend I didn't know M and just walk away. They are essential in order to give M the tools he will need to navigate in the future without me ever present at his side.

Case in point....

Last week, I signed Miss J and M up for the public library's Summer Reading Program.  I have done this every summer since they were little.  Miss J and M log the books they've read and sit down with a volunteer to discuss a book.  They enjoy playing games with the teenage volunteers and winning plastic toy trinkets and coupons for free scoops of ice cream.

It is also another lesson for M.

M learns how to sit at the table across from the library volunteer to quietly discuss his book.  While other eight year old boys are reading Harry Potty and Percy Jackson, M devours Curious George. With limited speech, conversation skills are worked on as M tells the volunteer what adventures George had and what mischief he got into. I am sure the volunteer has no idea of the significance it is for M to have this simple conversational exchange or to be able to recall details of a child's book.  This is huge for M.

I am hit with a wave of sadness and guilt as I send Miss J off on her own to find the next books for her to check out..  She is old enough and is certainly capable of navigating the library on her own, but I send her off on her own out of the necessity of having to closely monitor her brother.  How long she can spend browsing is entirely dependent on her brother's mood that day.

She wanders off.  I work with M on selecting new books. I hush his voice and remind him not to hastily  grab a handful of books off the shelf at once. I show him how to grasp the spine with his thumb and forefinger and carefully remove the book from the shelf and then to place it into his canvas library bag.

M spies the toys meant for the preschoolers.  I try to dissuade him, but he insists on playing with the cars.  I allow it, hoping it will buy more time for Miss J to get her books.  M picks up a wooden car and places it on a track.  The car glides along the top track before dropping to another track below and repeating the process two more times.M lays his five foot tall body on the floor, his face resting on the carpet.  He  watches the car zigzag left and right down the track.  Over and over and over again.

He is talking to the wooden car.  "Go down.....go down again....go down again." He repeats this with each pass of the car on the track.  The car's repetitive movement excites M and he begins to flap his arms.

I see younger children stop playing with their puzzles and dolls to give M curious looks.  I notice the eyes of nearby mothers peering over the tops of books.  I notice Miss J sink deeper out of sight into an aisle of books.

I notice this.
Miss J notices.
M does not.

I recognize that it is time to leave.  I manage to collect M and our books and get Miss J and head for check out.

I feel the pairs of eyes on my back.  I know they must wonder:
"What is wrong with that kid?" 
"Why does his mother bring him here?"
"How does she do it?"  
"I'm glad I don't have to deal with that."

If I could answer them, I would tell them this:  

I am here with hope that, someday, M will be able to manage a simple task of checking out a library book by himself and without attracting attention. That perhaps, someday, he will be able to order a meal, cross a street or ride a bus without me.  I would tell them that these goals, which may seem so simple to them, are huge for M.  That reaching these goals are my heart's desire.

That my hope is, someday, he will not need to be reminded to refrain from licking magazines and hugging strangers and saying hello and goodbye to inanimate objects.  

That my dream is to help my son fit into a world not built for him.











Sunday, June 24, 2012

Home No More

The phone rang early, before 8am, on Saturday morning.  It was my mother.

"I need to talk to you about something.  Have a minute?"  
I sensed the importance in her voice.  "Sure" I answered, worried that given the urgency in her voice and the early hour that she was going to tell me that someone was very sick or had died.

" I got an offer on the house."

I was silent.  This was the call I had been  both anticipating and dreading.  My parents live a thousand miles away from me.  They are moving to be closer to our family, but first they must sell their house.

My grandparent's house.  

The one on many acres of land in the middle of a large city purchased by my great-grandparents at the turn of the century when they immigrated to America from Sweden.

The place where my grandfather was raised.  Where my mother was raised.  The place I consider home.

My mother continued, "I wanted to talk to you about it first."

The house.  

It is a quite white cape on acres of land that was once a working farm.  In the backyard, there once stood not one, but two, swing sets for my cousins and I to play on.  There was a hand constructed wood and rope clothes line where socks and towels would dry in the summer sun.  There were picnic tables for sharing outdoor meals.  

There was also a large, open field in the back.  Where my grand father had once tended his expansive garden.  Where he grew corn and potatoes and tomatoes and beans and carrots and peas.  The peas where my favorite so my grandfather would take extra care to protect the plants from the hungry bunnies.  

The field is surrounded by blackberry bushes.  I would stand at the edge of the bushes, shoving one sweet, ripe berry into my mouth after another until my hands and mouth were stained purple and my stomach was full.

Beyond the field was the woods.  The place where I spend hours exploring.  Where there were ghostly shells of old farm buildings.  Where there was a pond where I would catch frogs in the summer and ice skate in the winter.

"S......it is a good offer." 

The house.   Where my grandmother baked sugar cookies and apple pies and made pancakes and pot of beef stew.  Where my grandfather sat in the dining room and read the afternoon news paper and sucked on peppermint candy.  Where I had my own little bedroom at the top of the stairs to the right.

My mother added, "And S, they aren't interested in the house.  They want the land.  They are going to tear down the house."

"Tear it down?" I asked, even though I had heard my mother's words quite clearly.

I had been fortunate.  My relationship with my grandparents was idyllic.  Their house was very close to mine and I spend much of my time there in my youth.  It was my sanctuary.  My grandparents allowed me to run and explore and make messes and get dirty.  I was free.  I was the one they doted on.  The one, who in their eyes, could do no wrong.  

After my grandparents died, my mother rented the house for a while before deciding to move back in two years ago.

"What do you think?" my mother asked me.  "I can't move until I sell the house.  The market is lousy.  I counted eight other homes for sale in our price range on our street alone."
"No." I said flatly.  "If they want to tear it down, don't sell it.  Don't take the offer."

It had been a difficult choice for my mother to decide to put the house that had been in our family for generations on the market, but we all loved the reason behind the decision; so my parents could move here.  Close to Mr. A and I, and Miss J and M.  So they may have the presence in their grandchildren's lives that I had with mine. So they may be present for every holiday and birthday and recital and concert.  For backyard  cookouts and baking cookies and decorating Christmas trees.

I had imagined a new family moving in to my grandparent's house.  A new family with small children who would explore the land as I had.  I had imagined a family with dogs hosting backyard parties.

I had imagined this family many times in my head.

I had not imagined the house being torn down, even though we all knew the value was in the expanse of land and not in the house.  

Tear down the house.  
No family.  
No dogs.  
No backyard parties.

Tear it down.  Was a developer trying to buy the property?

My mother added.  "They want to tear down the house to build a residence for people with special needs.  They want to build a single floor home with four bedrooms for them to live in."

My anger dissolved.
A home.
On a beautiful piece of land that was flooded with happy memories.
A safe place for four people with disabilities to live.
A place that was green and wooded and expansive and tranquil.

A place.  For people like M.

When my mind drifts and I wonder if M might ever live in a group home, I imagine a place that is bright and clean and safe and beautiful. I cannot imagine a more perfect place than my grandparents farm.

I will miss the house.  I will miss never being able to go home.  Letting go will be difficult.
But without any doubt, I know this is the right offer.  This is absolutely what we should do. It suddenly feels completely, fully right.

Without hesitation I tell my mother, "Take the offer."





Thursday, June 21, 2012

Honey, I'm Going To Home Depot!

The other day, Mr. A called out to me, "Honey, I'm going to Home Depot!"

I hear this and my stomach drops. I cringe.   Again?  Really?  Dare I ask?
"What do you need now?"  I am sure the now sounds drawn out and whiny.

Before I explain what Mr. A needed and why, let me first explain something else.

Mr. A is an engineer.  If you live with an engineer, you will understand this post.  If you are an engineer, you will find zero humor in it.

Mr. A is an engineer.  I am not.  Mr. A is Type A, anyalytical, precise. He is a perfectionist.  Even a bit anal.   I have some of that, but I am more free spirited with a teensy bit of fly-by-the-seat-of-my pants thrown in.  I throw a  lot of caution to the wind.  This drives Mr. A nuts.

In many ways, our polar opposite personality types give balance to our marriage.  Most of the time, our differences are an asset that work in our favor.

The exceptions?  Home projects.

The other day I was taking a shower.  As I was giving my hair a deep condition, I looked up and noted that the paint on the bathroom ceiling was beginning to peel.  I reached up and pulled a piece off.  And then another.  And another.  It looked terrible and something needed to be done.

Today. Now.

Once dry and dressed, I fished a scraped out of the garage and scraped off the peeling paint.  I sanded the ceiling.  I went to Home Depot and bought ceiling paint.  Since I was painting the ceiling, I might as well paint the walls.  And since I was painting the walls, I might as well get a new shower curtain and bathmat.

The bathroom was muted shades of grey, brown and tan.  It was drab and subdued and certainly needed some brightening.  I painted the walls a pale blue and bought a bath mat and towels in lime green.  The new shower curtain was a school of tangerine, lime and fuschia tropical fish.  Perhaps not something to grace the glossy pages of North Shore Living, but it certainly popped!

By the time Mr. A returned home from work that evening, the bathroom was done.
He looked at it, thankfully okay with the end result and asked, "It's bright......so.... did you just wake up and decide to do the bathroom?"
I nodded.
"I see" he says, rubbing his chin.

This is how I tackle home projects.

Now let me get back to the point of why Mr. A was going to Home Depot.  Again.

Miss J celebrated her birthday in early May.  One thing she was hoping for was a tetherball set.  Her grandparents agreed to get her one and I searched online for a good model.  Miss J was thrilled when she tore the wrapping off the gift.  She turned to Mr. A, "Daddy, can you set this up for me?!"

I had picked this particular model because 1.  It had the best reviews and 2. It was described as having "easy set up."  Set up consisting of screwing the pole into the ground, attaching the ball and playing.

Mr. A mulled over the directions.
"No, " he sighed.  I don't want to put it in the ground.  It will ruin the grass.
Mind you, we have two small children and two dogs.  Our lawn is played on.  Heavily.  I anticipate a small window of time after the kids move out and before grandchildren arrive that we may possibly have lush, green, enviable grass.  But right now, we have family grass.

"Yes," he tells me, "I'm going to have to modify this."
Here we go.  I sigh.
"I'm going to Home Depot."

Mr A returns with a five gallon painters bucket, several bags of playground sand and a bit for the Dremmel. He tells me he is going to fit the inside of the bucket with a piece of wood with a hole cut out for the pole.  Then he will put the pole in the hole and fill the bucket with sand.  He gets to work on this project.

And then he decides this will not do.

"I have to go to Home Depot again" he announces. "And I have to get a tire."
He returned with a tire and several 80lb bags of cement.  And a trowel.  And a blade for the saws-all.  He is also in a great deal of pain because he has pulled his back lifting the cement bags.

"I am going to fill the tire with cement and sink the pole in it.  I have to saw off the bottom of the pole.  This will be better because we can just roll the tire wherever we need it do go."   He motions to me to hold the pipe steady so he can saw off the bottom foot of it.  I sigh.  Audibly.  I pull on safety goggles and grab the pole as the saw rips through the metal.
Then he hands me a level.
I am confused.  "What is the level for?" I ask.
"Well, I want to be sure the ground is level when I pour the cement into the tire.  So go out and find a level spot in the driveway."
With exception of subtle dips and variations, we have a pretty level driveway.  I must have rolled my eyes a bit because he adds,
"And make sure you check it in two directions."  He makes a "+" on the ground to show me.
I go out and find the most level spot in my driveway.  My neighbors are working in their yard and see me roaming in the driveway with a level.  The give me a curious look but do not ask what I am doing.

Mr. A and I mix the cement and fill the tire. He pulls out the new trowel and smooths the cement to perfection.  "Like frosting a cake" he tells me. We place the pole into the cement and I assume we are done.

I am wrong.

"Get the level. We need to check the pole."
"It looks straight to me" I tell him.
He is clearly annoyed with me.  "Just go get the level."
Once he is satisfied, we anchor the pole so that the cement may cure.

Miss J is excited and cannot wait to play.

The next day, I pull into the driveway and see Mr. A at the tetherball set.  He is running his hands through his hair, a gesture I have come to understand means that he is annoyed. He is grumbling under his breath.
"It is too wobbly.  This isn't going to work.  I just got back from Home Depot with a piece of PVC pipe."
I am confused.  "PVC pipe?"
"I made a sleeve.  For the pole".  I glance at the pole.  It is wound with duct-tape and is enclosed in a PVC sleeve.
He sighs.  "I thought this would work to steady it, but it won't.  I need to go back to Home Depot."

"WHY?" I bark at him.  "Why do you need to go to Home Depot AGAIN?"

"I need a pole!" He exclaims.
"You HAVE a pole! In the cement in the tire!"
"It isn't sturdy.  I don't like it.  I am just going to get a steel pole and another tire and more cement and just do it that way."
"WHAT?  Are you kidding me?  Are you serious?"

Mr. A looks at me, shocked.
"Yeah, so?"

"So basically you are telling me that you are going to Home Depot for the FOURTH time for this stupid thing and that basically the only thing we will be using from this BRAND NEW tetherball set is THE BALL?

"I just want it done right" he tells me.
I go inside in a huff.  Engineers.
The box, with promise EASY set up.


A few days later I complain to my friend about how we still do not have a playable tetherball set.
"Just go buy the same set, screw it into the ground and be playing it when he gets home from work" she suggests.  I laugh.

I laugh hard.  I laugh and know that I will still laugh in the years to come about this stupid tetherball set.  Perhaps Mr A and I  attack our projects in a quite different manner, but somehow, we make it work.

Thursday, June 14, 2012

Just Go With It.

Day two of Miss J and M's summer vacation involved public nudity, a library meltdown and a dog that went missing...twice.  Things definitely could have been going better.

Day three:  Miss J was invited for an all-day play date at a friend's house and, for me, a dental cleaning.  I dropped Miss J off at her friend's house and explained to M that we needed to go to the dentist.

"I get my teeth cleaned?" he asked me.
"No, bud!  I am getting my teeth cleaned.  You don't have to today.  But I do need you to have a calm body and a quiet mouth while we are there, okay?"
"I get my teeth cleaned?" he asked again, this time with some concern in his voice.
"No...just me. Not you."
And then... M began to cry.
"I get my teeth cleaned too!"
I was confused.  "You want to get your teeth cleaned?"
"YES! I get MY teeth cleaned!"  And just to be sure I fully understood what he was saying, M proceeded to repeat himself a dozen times.

M is really mad now.  He is pointing to his teeth and insisting he get them cleaned.

Let me explain something:  M does fairly well at the dentist, but he has NEVER begged me to take him to get his teeth cleaned.  He basically TOLERATES going

I try to reason with M.  I try to explain that today's appointment is for me and that I will make an appointment for him.  (He is due anyway).  He continues to cry.

I am stumped.  I call the dental office and ask if M can take my appointment and I will schedule another for me.  Let's face it...if your seven year old begs you to get a dental cleaning, you go with it.  I am told that if I can get over there soon, they will take us both today.  And off we go.

M tells the hygienist that he will go first.  He climbs into the chair and finds a comfortable position.  He settles into the chair, arms folded behind his head and ankles crossed.  He looks like a little prince and I think the only thing missing is a pretty girl fanning him with a giant leaf and hand feeding him grapes.

He opens his mouth wide for the hygienist.  He is still while she checks his teeth and he giggles when she polishes them.  He is fascinated by the spit-sucker and the metal tooth-poker. He could not have been more cooperative.

The one thing M has never had are X-rays. Since M's teeth are healthy and he's never had a cavity, they haven't pushed the issue. She looks at me and whispers, "He's doing really well.  Do you think maybe we can get an X-ray?"

I explain to M what will happen with the X-ray.  In the past, he has turned his head away and says, "No, thank you." but today, he answered by opening his mouth as wide as possible. We got all the X-rays we needed in one shot. Finally, fluoride is brushed on to M's teeth and he leaves the chair.  He sits perfectly still and quiet while I get my teeth cleaned.

I am so very proud of him and praise his behavior.  I tell M we can go do something fun now.  I ask him what he would like to do.

His answer?

"I go get my haircut now."

And, if your seven year old asks for a haircut, you go with it.

Wednesday, June 13, 2012

What Is Normal?

"M is weird, mom." Miss J laments to me.
"That isn't very nice.  You know, you're pretty strange sometimes too." I tease back.
Miss J sighs heavily.  "No mom, you don't get it. He's just not....normal."
"I know, J" I tell her.  "It isn't easy.  But honestly, all brothers are a bit weird."
Miss J shakes her head and walks off.

Later that day, I ask Miss J if she'd like to work in the garden. She'd been asking to make a vegetable garden with me, and this summer we finally did it.  Miss J has worked very hard at preparing the ground, building the raised bed and carefully selecting the plants.

Miss J and I get to work on our garden while M explores the back yard.  Before long, he has found a dirt pile where the herb garden used to live before we moved it by the vegetable garden.  Like many little boys, M likes dirt and he finds a shovel and seats himself in the middle of the dirt pile to dig.

Miss J and I continue our work, moving between the front, back and side yard.  M is happily occupied and I am paying little attention to him.

When we return to the backyard, I see that M has discovered the garden hose.  He has added water to his dirt pile and has created a wonderful mud puddle for himself.  I know that with or without the mud puddle, M will need a bath, so I decide to let him continue.  He is happy and Miss J has my undivided attention.

Miss J and I have moved to the front yard where we are filling large pots with soil and are planting flowers to brighten our front walk way.  I make my way  to the back for another bag of soil and find M has decided he is done with the mud and is filling his elevated water table with the hose and is attempting to get the mud off of his hands.  I watch him for a moment, quite proud of his self directed attempt at clean up.

He sees me watching him.
"Look, Mama!" He yells across the yard.  "I get clean!"
I praise his efforts. "Nice job, M!"  and return to the front yard with my bag of soil.

Miss J and I get our flowers planted and placed just so.  We clean up our tools and return to the back yard.

When I round the corner to the back yard, I gasp.
Standing there is M.  He is gleefully splashing at the water table.
He is as happy as a lark and as naked as a jaybird.
Naked.  Totally naked.  His ultra white bottom practically glowing in the sun.
He sees me and shouts, "Mama!  I clean now!"
I nod, ever so thankful for all the tall tress and thick bushes that provide our yard with privacy.

Miss J gives me her best, "are-you-kidding-me?" look.
"See mom.  I told you he was weird."







Tuesday, June 12, 2012

Confessions Of A Summer Mother

When the weather changes and the days are warmer and longer,  my alter ego emerges.  She is Summer Mother.  She is quite different from the year- round Me.

I am a woman who prides herself on order.  I like schedules and predictability.  I like to do things "right", especially in my parenting.  I parent well.  I balance Miss J and M's day with school and play and meaningful activities.  I check homework and sign assignment notebooks and practice spelling words and math problems.  I keep track of doctor's appointments and dental appointments and make sure books are returned to the library on time.  My children eat a diet rich in fresh fruits and vegetables and low on the processed junk and I am diligent about making sure teeth are brushed before getting into bed by the established bedtime.  I am a stickler for hand washing and getting enough sleep.

But sometime in June, the Summer Mother arrives.  Miss J and M might say she is more fun, relaxed and, dare I say, cool.  That is partly true, but mostly, Summer Mother is just plain lazy.

This Summer Mother has little need for a schedule.  Miss J and M are in no rush, no hurry to go anywhere most days.  On mornings when the sun is shining impossibly bright and the grass is still wet with the morning dew, I will send Miss J and M outside to play in their pajamas.  They find this to be fun and slightly rebellious.  I score a few "cool" points, but that is not my intention.  I know they will just get dirty, so rather than dress them only to have to change them again, they play in their jammies. It means less laundry for me.

My children are frequently shoeless during the summer.  They romp through the grass and dirt of the backyard until the soles of their feet are blackened from hours of play.  And while I know any decent mother will slather her children with organic, 200 SPF sunblock, I admit that I like how my children look when their skin darkens like an old penny and streaks of blonde push through their unbrushed hair.

They live on a steady diet of peanut butter and jelly (to my credit, the bread is whole wheat and the jam is homemade) and hotdogs (free of nitrites, of course.).  They eat too many freeze pops.  They aren't the organic fruit juice variety, but the unnaturally bright Fla-Vor-Ice I sucked on as a kid that make their mouths glow neon orange and purple.  They eat far too much ice cream too...either from the many shops we will visit (when strawberry ice cream counts as a serving of fruit and dairy and can be justified as being an acceptable lunch) or from chasing the ice cream truck for two blocks when I then shell out way too much money for a frozen concoction on a stick.

Dinners consist of anything that can be served cold or cooked on a grill and eaten with fingers.  M will often have an ear of corn in one hand and a wedge of watermelon in the other.  The juice runs down his arms and drips off his elbow....but that is okay because in the summer, a run through the sprinkler and a swim in the pool count as good enough bathing.

Miss J's teacher gave her a math packet to work on over the summer and I already can't find it.  I have given notice to M's therapists not to expect us until school starts up again.  For now I will muck around in the vegetable garden and make s'mores and catch fireflies and spend lazy days at the beach with Miss J and M. I will offer them extra freeze pops so that I may have just five more minutes on the patio with a trashy book or allow them to watch too much television so that I may have a few moments of quiet.  And when I really need a break, I will send them on playdates or to visit their grandparents.

And come fall, when all the summer gear has been packed away, the Summer Mother will depart and I will be ready to start the new school year...tanned, relaxed and ready.


Monday, June 11, 2012

Men and Women Parent DIfferently

I can usually get all of my errands done during the day after I get off work and before the kids are home from school. Sometimes, no matter how well I try to plan,  it just doesn't happen that way.

Recently I noted that our milk and bread supply was dipping to dangerously low levels and had to make an evening run to the grocery store after Mr. A had come home from work.

"What do I need to do with the kids?" he'd asked me.
"All you have to do is put them to bed." I answered as I walked out the door, shopping list in hand.

When I'd returned not more than two hours later, I was greeted by a slightly nervous Mr. A.  
"I think you should check on M" he said.  "When I went to check on him, he felt warm and he was clammy. He may have a fever. I hope he's not sick"

When you have a child with the lengthy medical history like M has, you take the word, "fever" very seriously. I put my bags haphazardly on the counter and made a beeline for M's room.  

Mr. A was right, M was certainly clammy.  His forehead was beaded with sweat and his damp hair was sticking to his head.  I pulled back the covers, and as soon as I did, I let out an audible sigh of relief.

Mr. A had dressed M in fleece pajamas.  It had been almost 90 degrees that day.  M wasn't sick, he was slow-cooking.

"It's a million degrees outside...why did you put him in fleece?"
"I didn't know. They were in the drawer.  I thought it would be okay."

I tried to wake M so I could get him into cooler pajamas, but M was sound asleep. I peeled the fleece bottoms off and took off the blankets and let M sleep with just a sheet in his shirt and underwear.

The next morning, I was folding laundry in the living room, which happens to be next to M's room.  I could hear M beginning to stir and knew he'd be up soon.  

Instead of his usual, "Good morning, Mama!" I heard an incredibly  freaked out M shouting, "Oh no! Oh no!  My pants!  My pants are gone!  Where my pants, Mama?"

I found this to be hysterical and I called Mr. A to tell him what M had said.  He wasn't nearly as amused as I was.  He didn't get it so I called my dear friend and my mother and both responded with a hearty belly laugh.  Women just see things a bit differently than men do I suppose.



Wednesday, June 6, 2012

Second Chance Dog

We have two dogs.  Our first, Georgia, was purchased with money I had received for my birthday when Miss J was three and M was one.  My mother had given me the money with strict orders that I must "Buy something for myself" with it.  It was not to be put toward bills or other household expenses. Admittedly, I thoroughly enjoyed hearing the shock and surprise in her voice when she asked what I had bought and I answered simply, "a dog."

Georgia was an eight week old puppy when we picked her up from the breeder. A black lab, she was a round ball of black energy.  (Since we were raising a child with special needs, careful consideration was given to breed and dog selection.)

People thought we were insane.  Our son was but a year old with a lengthy list of medical and developmental concerns and an uncertain future.  What business did we have getting a dog?

I saw it differently.  We needed something different to focus on.  We needed a different kind of chaos in our lives...a good chaos.  We needed something else to do and talk about besides what was happening with M.  For me, it was a perfect idea.

I spent my days playing with Miss J, managing M's care and training a nippy, chewing puppy.  It was perfect.

We loved the joy that Georgia brought to our lives so much that four years later, Mr. A and I thought about getting a second dog.  I loved the idea of having two dogs and felt Georgia would benefit from having a playmate.

This time, we decided to adopt from a local shelter.  I had promised seven year old Miss J that she could be part of picking the dog.  Miss J and I visited the shelter and looked at all the dogs. I hadn't noticed that Miss J had wandered off until I heard her call from another part of the shelter, "Mom!  Come here!"

Far away from all the other dogs, quarantined from the rest, was a dog. She was a tall, lanky dog, curled up into an impossibly small donut on the cement floor of the cage. Bones protruded from her spine, hips and ribs. Her sad eyes told a story of a life hard lived.

"I want her."  Miss J told me.  She wasn't asking me for the dog.  She was telling me.
"Honey, " I began, "She looks very sick.  We don't know what her story is.  I'm not sure this is the dog for us.  Let's keep looking."

Miss J didn't budge. "Mom.  No.  She needs us."

I looked at the sickly dog and I looked at Miss J.  I sighed and asked one of the volunteers about the dog.

There wasn't much information on her.  She was new to the shelter and was an owner surrender.  No one was sure why.  She was listed as being a purebred black lab, about a year old, although she looked like she may have some Great Dane in her. She was emaciated and may have been abused. She was quite ill with an infection and was on her third round of antibiotics.  If we decided to adopt her, we'd have to wait until she off the medicine and her health had improved.

I looked at the scared, shivering dog and I thanked the volunteer for the info and we left. Miss J sat quietly on the ride home.  Finally she said, "She needs us.  She's had a hard life and we can give her a good one."

Miss J had the best intentions and the best heart.  But she was a little girl who still didn't understand there was so much more to consider. I wasn't sure I had what it took to essentially rehabilitate a dog like this. She looked so sickly I wasn't even convinced she would live.

But I couldn't stop thinking about her.  I couldn't stop thinking that perhaps Miss J was right.  Perhaps, because of all that we had endured, we were the perfect family for this dog.

Without telling my family, I returned to the shelter the next day to see the dog the volunteers had named, "Shady."

I sat by her cage and talked to her.  She came to me.  I petted her.  Her head was low and her tail tucked between her legs.  She was shaking.  She was due for her medication and the volunteer handed me the pill.  Shady took it without a fuss. She curled up onto the towel that was laid on the cement floor for her and fell asleep.

Mr. A and I discussed it further.  As a family, we returned to the shelter again to see Shady.  We took her out into the play area.  She was shy and uncertain, but appeared to be gentle and sweet.

Two days later I returned again with M and his wheelchair and tried to walk Shady on a leash. She would need some training, but she already knew some basic commands. The shelter volunteer handed Miss J the leash.  Miss J commanded, "Heel" and took Shady to her left side and proudly lead her around the play area.

I returned one more time with the entire family, including Georgia, to see how the two dogs got along.  She remained quiet and reserved, but showed no signs of aggression.  For the first time, I saw the hint of a tail wag.  I was watching Shady closely and she was passing every test.

We'd visited Shady several times and had come to like her.  Her health was improving and she would soon be ready for adoption.  We had to made a decision.  Mr and I turned to Miss J and asked, "Do you still want her?"

Shady curled into a ball in my lap and slept on me the entire ride home.  She was calm and quiet when I scrubbed her tip to tail that night with Johnson's baby shampoo.

It felt right.

When it was time for bed, we crated Shady.  She howled and barked that entire first night.  I discovered she wasn't housebroken. She chewed up everything in sight. The next morning she bolted out the door and took off running.

I began to second guess my decision to bring this dog into our home.  I asked Mr. A if we'd made a mistake and if he felt we should return her.

"You can't" he told me.  "She's ours now."

Slowly things improved.  She learned to walk nicely on a leash beside Georgia and she stopped running off at every opportunity.  She became housebroken and she stopped chewing on things that did not belong to her.  She does remain a counter surfer though; a habit I suspect may never be broken.

Her health improved.  She reached her ideal weight.  Her coat thickened and took on a glossy shine.  Her copper colored eyes were lively and bright.  Though she had been emaciated, she never guarded her food.  When M would crawl up beside her as she ate and would stick his fingers in her bowl, she never once snapped or growled.  She would gently eat around his hands.

She is still a nervous dog, but she is no longer fearful of everything she encounters. My biggest concern for our guests' safety with Shady is centered around her constantly wagging tail.  She wags with her entire body and with such force that her tail will slap you like a whip.  Her excited tail has left red lashes on the legs of unsuspecting guests more than once.

Georgia was initially unsure of this interloper who invaded her space, but the two now enjoy each other's company.

By no means a watch dog, when new people come to our home, she hides behind my legs; yet if Mr. A or I roughhouse or play wrestle with the kids too much, she will bark loudly until we stop.  When we take a family walk, she cries if Miss J ventures too far ahead of the pack.  At home, Shady is my constant companion and follows me wherever I go.(She sleeps beside me as I write this.)  And each afternoon, when she hears the engine of the school bus rambling down our street, she runs to the front door to wait for Miss J to return home from school.  If Miss J spends too much time talking to her friends and takes too long to walk through the door, Shady will whine at the door as if to say, "Hurry up!  I've been waiting for you all day!"

Shady has been with us for nearly three years.  Miss J was quite right when she said that Shady needed us, just as we needed her.  She is the right fit for our perfectly imperfect family.

Monday, June 4, 2012

Thick Skin

Two weeks ago I was sitting in a hotel bar with Mr. A and some of his work colleagues celebrating an incredible award they'd received.  We'd just eaten a fabulous dinner in a beautiful hotel and had come to the bar for a few drinks before calling it a night.  It was a night for celebration and good times.  Everyone was having a wonderful time.  Drinks and conversation flowed and the vibe was great.

Until I heard a "short bus" joke.

The person who made the remark took it a step further and commented on "the 'most special' of the special kids who ride the short bus. As a parent of a "short bus" rider, the comment did not sit well with me.  

My happy, good-time vibe was gone, as quick as a single pin prick to an inflated balloon.

I know it was an ignorant mistake and not meant as a cruel and intentional insult at handicapped children.  But still, I felt the sting of the words.  The hot tears that started to come unexpectedly caught me off guard and I forced a smile.  

I am not one to cry and when tears intrude, I am angry.  Angry that I can be broken.  Angry that few can understand any of this. And sometimes, angry that I am so intimately acquainted with all of this. Angry that M's acceptance in this world takes work.

Through my years of parenting M, I have grown a thicker skin.  But apparently, still not thick enough.

Thursday, May 31, 2012

R.I.P, Mr. Fishy

M loves fish.

Our local Walmart used to have fish tanks and as a toddler, M knew exactly where they were.We'd enter the store and he'd immediately point in the direction of the fish tanks.  I'd push M in the shopping cart to the tanks and he'd squeal with delight at the fish.  I'd stand there with M in the cart, watching him watch the fish.  It was the first thing he ever took a true delight in.

M had never really shown genuine interest in anything and seemed to lack attachment. He never had a favorite toy or stuffed animal.  He never had a favorite television show and never cared for the image of a particular character to be printed on his pajamas or sippy cup. Of course he was amused and entertained by these things, but he never had a "favorite" anything.  Frankly, he couldn't have cared less.

This bothered me.  When people asked what M liked, I would imagine what a typical boy M's age would like and I would answer accordingly. Basically I lied through my teeth.

But now, he liked fish. Now, when people asked what M liked, I could say that he liked fish.

We celebrated M's third birthday by taking him to the aquarium.  He loved it.

At the age of five, when M was in the hospital having major kidney surgery, I found a lamp in the hospital gift shop that looked like an ocean.  Images of fish moved through the blue glow of the ocean light.

When M turned seven, I bought him a small desk top fish tank for his birthday.  While we shopped for it, Miss J found a Sponge Bob figurine and placed it in the tank.  (My love-hate relationship with Sponge Bob could inspire an entire blog entry of its own, but basically M loves Sponge Bob.  I do not share this sentiment, however, when your child with special needs shows a genuine interest in something, you go with it.)

When we revealed the tank to M, his face was blank.  M was unimpressed.  I finally realized that M probably didn't understand the purpose of the fish tank without fish and water in it.

Together we set up the tank.  He carefully poured in the gravel and added the water.  Miss J placed the Sponge Bob figure and the artificial plant. I took him shopping at a local pet store and told M to pick out a fish for the tank.  He picked out a red and blue guppy.

Depending on the day, he would tell you the name of the fish was "Sponge Bob" or simply "Fishy."  

M would insist each night that the colored lights within the tank be left on so he could watch the tank as he drifted to sleep.  In the morning, M would take a pinch of fish flakes from the food jar and would drop it into the tank.

Yesterday, Fishy went belly up.

IN a "Bad Mother" moment and caught up in the business of my own life, I forgot to tell M.  I also forgot to take Fishy out of the tank. I put "Flush Fish" on my mental To-Do list in the midst of running my errands.

I didn't get to it soon enough.

This afternoon, M was playing happily in his room.  I had been folding laundry in the living room.  M flew out of his room and ran to me, crying.

"Mama!" he cried.  "My fish died!"
"Yes, bud.  Fishy died.  I'm sorry."

M cried for half a minute before announcing to me that he was going to watch tv.  He'd already moved on.

I feel sorry that Mr. Fishy died, yet at the same time I am a bit happy.

I am happy that M noticed the fish was dead.  I am happy that M has some degree of understanding that there is a difference between living and dead.  I am happy that he showed genuine emotion, no matter how brief it may have been.

I am thankful for these little revelations that Mr. Fishy's passing brought to me. I am thankful for anything that helps me know my son better.




Saturday, May 26, 2012

Old Shoes

I sat on the floor by M's closet inspecting his shoes.  He needs new ones.  His favorite pair of gym shoes ( or as M says, his "meeskers" because he can't quite say, "sneakers")  are getting tight.  The toes are hopelessly scuffed..  I turn the shoes over and notice the dirt caked into the sole; evidence of a little boy playing hard in the still-soft spring soil of our back yard.  Many times I have stood at the back door clapping the shoes together to loosen the dirt that found its way in the crevices.

I have deemed his favorite shoes to be "back yard" shoes.  They are not in any condition to be worn in public, but they are the perfect back yard shoe.  I insist M remove these shoes in the garage before he enters the house but he often forgets and walks through the house in them.  Too many times I have have crouched on hands and knees scrubbing ground-in dirt out of the carpet that had been tracked in by a certain little boy wearing these mud-caked shoes.

Yes, M will need new shoes.

Like many mothers, I gasp from sticker-shock at the price of boy's gym shoes.  I grumble at the thought of taking M to the store to be fit.  I will look at the new shoes in disbelief at how much M's foot has grown and will wish that his growing would slow just a little so that he may stay in a pair of shoes a bit longer.  I am like any other mother.

But unlike many mothers, I will often sit by the floor of my son's closet and hold a worn out , filthy shoe in my hand and I will feel my eyes becoming wet with tears of joy.

I stare at the shoe in my hand and remember a baby, who we were told, may never walk.

I remember M's physical therapist telling me that there was no need for M to wear shoes unless he was walking.  I bought shoes anyway.  Not many two or three year old boys are pushed in strollers without any shoes on.  I wasn't up for the line of questioning from critical old ladies in supermarkets asking, "Where are his shoes? Why doesn't he have any shoes on?".

I put shoes on his feet anyway.  Call me a rebel. 

The shoes covered the pristine white bottoms of his socks.  The perfect bright-white bottoms of the socks that never been walked in were like a harsh neon sign announcing my son's immobility to me daily.

When M outgrew those shoes, I could have put them back in the box and returned them to the store. There was no dirt in the treads.  No fraying of the laces.  No creases in the leather.  The shoes looked the same as the day they had come home from the store.

At two, M was fitted for leg braces.  He sat in the orthotist's office, his legs wrapped in plaster to get a cast  to make the mold for the hard plastic that would support his ankle and leg. The brace would consist of a hard plastic boot that his foot would slide into. Leather straps at the ankle and the knee would hold the braces in place. 

As he sat with his legs wrapped, we picked out a design for his new braces.  We picked the bright blue plastic with race cars printed on them.


The orthotist told M they would be so cool.
Silently I thought, no, this is far from being cool.

The braces had to be worn with shoes.  I bought M a pair of gym shoes in a wide-width and  a few sizes larger than his foot to accommodate the brace.  I ripped out the lining of the foot bed to create a larger space in the toe box for the brace to fit comfortably.  I slipped the shoes over the braces.  They looked awkwardly large and clownish on M's small feet.

I'd forgotten M's hat on this hot summer day.  This one was a random one my mom had.  It could not be more appropriate for M.
It was in those shoes that M first crawled.  He was nearly three.  Crawling wore down the leather of the toes of the shoes. I would rub my thumb across the worn leather and smile. I smiled for the gift of worn, scuffed shoes.  I smiled for the now-mobile boy who wore the shoes. 

We were told M may never walk.  I wish during those dark and fearful years that I could have whispered into my own ear that someday I would be sitting on the floor by M's closet holding old, worn out shoes in my hand.

Tuesday, May 22, 2012

Terror

My husband recently won a prestigious award at work.  He will receive the award this week and I am brimming with pride for this great accomplishment.

I am also terrified.

You see, the award is being presented in another city.  One thousand miles away from our home.  We'll be flying there.

Those who know me well know that I hate to fly.  The thought of boarding what is essentially tin can and zooming at hundreds of miles per hour miles above the earth terrorizes me to the core.  I board every airplane with known certainty that it will crash.

And while I have never been a fan of flying, since having children it has gone from a dislike to phobic levels.  Miss J is just ten years old.  She is entering adolescence and needs me now more than ever.  And M.  Who would want M and love and care for him like I do if I died?  What kind of mother takes such a known risk when staying safely on the ground is an option?

I gave this some thought.

"I'm sorry hun, but I am not sure I can go with you" I told Mr. A.
He immediately recognized my attempt at a cop out and called me on it.
"Why not?"
"Well, you know....I just started my job not too long ago and I really shouldn't take the time off."
"You can ask, though."

I presented the situation to my boss who gave me a wide smile and granted me the time off without question.

Planning this trip has been a nightmare for Mr. A.  He called me from work with our travel plans.  He had a flight for us, leaving at 9am the morning of the award ceremony.

"What kind of plane is it?"  I asked him.
He paused. "It's an express jet."
"No.  That won't do.  Too small.  We need another plane. Is there a bigger plane?"
"The only other plane leaves before 6am.  We'd have to be at the airport before 5am."
"If it is bigger, we can take the early flight."

Moments later, he called me back.  He'd booked the flight.
"I was able to get us into business class" he said happily.
"In the middle of the plane?"
"Yes, the middle."
"You know I like the back."
I like the back of the plane.  That way I can see the entire plane in front of me.  The flight crew hangs out in the rear and I like knowing they are nearby. In my illogical fear, this makes perfect sense to me.
"Well, I already booked the middle."
(My mental wheels are already turning to see how I can manage to get myself moved to the back.)

I have been paying close attention to my body, just to check if I might be coming down with something.  Perhaps a fever or flu that would ground me. Aside from nerves making me want to toss my lunch, I feel perfectly fine.

My dear friend called to ask if I was excited for the trip (which coincides with our 14th wedding anniversary.).  I told her I was scared to death.

"Oh relax!"  She chided me.  "You're going to have such a great time!  I'm so happy for you!"
"I hope I don't die."
"You aren't going to die."
"How can you say that?"  I questioned.
"Really.  You won't die.  I promise.  Just take Benedryl before you get on the plane and take a nap."

I happened to be walking into the pharmacy to pick up a prescription while I was on the phone with her.  I got my medication and asked the pharmacist how much Benedryl I could take at once without killing myself.  Perhaps enough to put me in a roughly two hour coma.

I feel for Mr.A...I feel for him for having a wife who dampens his excitement with her fear of flying (actually, I don't fear flying. It is crashing that I fear.)  I feel bad that he must constantly reassure me that I won't die. I am hoping I can psyche myself up and get over myself so that Mr.A and I can enjoy this wonderful award, in a beautiful city and also celebrate our anniversary.

So if you would kindly send a few prayers and good vibes and well wishes my way, I would greatly appreciate it.









Sunday, May 20, 2012

Potty Training M

M has "Global Developmental Delays."  For those blissfully unfamiliar with the term, it means that every skill M acquires takes far more time that a typically developing child.  In our world, "inchstones" are celebrated because the "milestones" frequently elude M. Everything M has learned to do has been accomplished through the help of a devoted team of doctors, therapists, teachers and family.  The skills unfold ever so slowly and raising M is a wonderful lesson in patience and perseverance.

In infancy, M had to be taught how to eat.  M sat up at 21 months.  He four-point crawled at 2.5 years.  First steps happened at 3.5 years and M was able to walk independently shortly before age four.  At age five, M had but a handful of words and another handful of signs to communicate with.  He was six before he began putting words together to construct simple sentences. I beam with pride when I share this, for once upon a time we were cautioned M may never walk and may never talk.

Life with M has been a question of "Will he ever....."
When M was very young, one of the "Will he ever...." questions I'd ask myself is if he would have the ability to potty train.  M has very low muscle tone, neuromuscular dysfunction and significant kidney disease.  Physiologically speaking, I wondered if it were even a possibility.

I asked this of M's urologist as he was writing M's first prescription for diapers. M was three years old but was the size of an average seven year old and standard Pampers just didn't cut it any more.  The urologist explained that we could mail order larger sized diapers for M and that insurance would cover it because they  were a medical necessity.

He then answered my question and said he felt that M did have the ability to be toilet trained.  He guessed it would happen sometime between the ages of 6-8.

The summer before M turned four I decided that I would try to at least have M use the toilet in the morning when he awoke.  He'd been waking up dry for months and it seemed like a morning scheduled visit to the toilet just might work.(Afterall, I knew that his bladder was indeed full.) It was difficult for M to relax his muscles to go on command and it was several days of trying before we had a success.

What happened next I would call miraculous.  Within days, he was peeing on the toilet every morning.  Within two weeks, he was using the toilet full time and I felt comfortable moving M into underpants full time. He was 3 years, 10.5 months old and he was potty trained, day and night.

This was a shout-it-from-the-rooftops moment for me.  He was potty trained!  He wasn't even four years old! He wasn't that delayed on this one.  And he had achieved night time dryness before many of his same-aged peers....a fact I would manage to work into conversation whenever possible.  "Yes...M is potty trained....day and night!"

What made it all even more remarkable is that M had toilet trained within months of learning to walk.  He had trained at lightning speed despite the low tone, the coordination and balance difficulties, the kidney disease.  He had done it. (When every achievement has come through years of hard work, it was nice to have the potty gods smiling down on my and giving us an easy go of things)

M was toilet trained, but he was far from having total independence in the bathroom.  In those early years, he still needed my help to physically get on and off the toilet  (Being so tall, M did not having the benefit of using a toddler's potty chair or ring insert and had to train on an adult sized toilet) .  He needed me to work the buttons and snaps.  He did not have the strength nor the balance to bend over and pull down his pants without falling.  Even as M nears eight years old, he still lacks the fine motor skills required to button and zipper independently.

Today....

M's life is dictated by routine;  routine that begins from the moment he cracks open his eyes.  Each and every morning it begins in the same manner.  M will wake and immediately seeks me out so that I may walk him into the bathroom. (A routine so ingrained in me that more than once I believe I have actually slept-walked into the bathroom) I help, if needed, but my presence is more about the habit of me being there than an actual need for my help.

M has recently changed up this routine.  On his own.  Without prompting from me or anyone else.  This in itself is an "inchstone"  (insert choir of angels singing, "Halleluja!")

On morning, a few days ago, M was up earlier than usual.  As usual, he came to wake me.  Rather than inform me of our morning walk to the bathroom, he asked for a drink.  I suggested he use the bathroom first and he told me he already did.  Sure enough, he had, as evidenced in the toilet bowl.  (Typical to many seven year old boys, the art of flushing is lost on M)

M has continued to do this every morning since.

As I type this, I am laughing out loud at how ridiculous this may seem to some who read this blog...to write about my son's bathroom habits.  Perhaps to some it may seem insignificant that my soon-to-be-eight year old is using the bathroom alone.  It may not be a shout-it-from-the-rooftop kind of a big deal, but it is the kind of big deal that you do share with the grandparents and your closest friends who 'get it.'  I am grateful to have people in my life who will share my excitement on this one.

I keep a mental checklist of the things I worry about regarding M.  I feel good knowing I can cross off:
  •   Worry about when M will finally use the bathroom alone.  
(Yes, I've often pictured myself, old and gray with my walker, escorting M into the bathroom.)

It may seen small and insignificant and not worthy of much merit, but these are the thoughts that occupy my mind.  These are the things I think about enough to write about.