Wednesday, February 29, 2012

Once Upon A Time....Part I

Once upon a time, a girl met a boy.

It was the summer of 1990 and the girl had recently graduated from her small town New England high school.  She was just eighteen and beginning a wonderful new phase of her life.  She was an adult now, but still carefree and young and free of the weight of most adulthood responsibility.  She would be starting college in the fall.  She'd be living, on her own, away from home.  The world was hers to own.

One summer evening, she went with her girlfriends to a party.  It was a small group, so perhaps it would be best described as a gathering rather than a party.  She saw the boy walk by. He was tall and lanky with deep brown eyes and almost black hair. He was handsome.  He looked at her, but said nothing other than, "hello." She turned her attention to another boy in the room.  A boy who was shy and awkward and somewhat nerdy.  She felt bad he was alone and began to talk with him.  A while later, the boy walked by again.  There was a swagger in his step and he had a black leather jacket flung over his shoulder.  The girl watched him head for the door.  She decided he was cocky.

One week later, the girl was at another party. this time,  it was a large party, attended mostly by the Latin students of the nearby engineering school.  The music was loud and everyone was dancing salsa and merengue.  The girl did not know these dances so she watched from the sidelines. She was shy and afraid to try to dance out of fear of making a fool of herself..  The boy, the cocky one with the leather jacket,  asked her to dance.  She replied that she didn't know how.  He offered to teach her.

"It's too crowded in here," he told her.  "Come outside and we'll teach you there."  She gathered her friends and he gathered his and they headed outside onto the quiet street.  The boy and his friends taught the girl and her friends to basic moves.

The boy and the girl headed back inside and danced for hours.  When the girl had to leave (she was eighteen, but still lived with her parents and still had a curfew), the boy asked for her phone number.  She reached into the glove compartment of her Plymouth Horizon and pulled out a scrap of paper and scrawled down her number. She told the boy she was leaving in the morning to volunteer at a camp for children with cancer and would be gone for a while.  She decided the boy wasn't so cocky after all and hoped he would call her.

The day she returned home, he called.

The made plans for a double date.  Forgetting the friends they were with, they talked for hours that evening.  It was new and exciting, exhilarating even, but at the same time familiar and comfortable.  The evening ended and the boy asked the girl if he could see her again.  She said yes.

 "Tomorrow?" he asked.  She nodded.  The next day, they were together again.  And the next day.  And the next.  The boy and the girl, each working summer jobs, would meet as soon as their work day was done.  They would spend the rest of the day together, savoring the moments until the hands on the clock got close to midnight and the girl was due home.

The summer was amazing.  They spent lazy days at the beach.  They indulged late night cravings for Mexican food at a local eatery.  The took long drives to nowhere in particular and talked and learned everything they could about the other.  The boy told her all about the far away places he had lived.  The girl, raised in New England, showed the boy the collection of places that had formed her memories.

To this day, the boy and the girl will both tell you that the summer of 1990 was the best one yet.  THe summer was perfect.  It was beach sand and sunburn after days on the Massachusetts sea side.  It was the crisp mountain air of New Hampshire.  It was lazy summer afternoons and evenings filled with friends and dance.  It was a clock whose arms traveled too quickly about the face. The kind of summer  when you turn on the radio and a certain song will take you back to that time and fill your brain with a memory so vivid that you can hear the music and taste the air.  A time that was captured in near perfection by grainy 35mm photos.  A time commemorated by movie theater ticket stubs and love notes scrawled on paper restaurant napkins and prizes won on the boardwalk by the beach. Precious memories still saved in a shoe box decades later.

Summer love.
Summer romance.
Summer joy.

One evening the boy and the girl were standing by her car, saying their goodbyes before the girl had to leave. The girl did not want to leave but it was getting late and she was pushing it close to her curfew and knew she better not walk in her parent's house late one more time. The night air was warm and humid and the sky bright with stars. The boy was holding the girl close.  "I love you," he whispered quietly, gently, into her hair.

The girl knew it then.  She knew in that one moment that the words just spoken to her had rolled off the lips of her future husband.

Tuesday, February 28, 2012


Emily Dickinson : 

I never saw a moor

I never saw a moor,
I never saw the sea;
Yet know I how the heather looks,
And what a wave must be.

I never spoke with God,
Nor visited in heaven;
Yet certain am I of the spot
As if the chart were given.

Truth:  I envy those with deep faith. I am not talking about religion.  I am talking solely about faith.  Faith that is quiet, calm and unwavering.  It is my desire that I were someone who could take the twists and turns and upheavals that life throws in my path and be accepting of them.  I wish I could take challenges with an utmost certainty that I am part of something greater and that there is purpose and meaning to the chaos that I struggle to make sense of.

Growing up in conservative New England, I was raised in the church.  I spent Sunday mornings in Sunday School, followed by the Service.  Sunday evenings were for Youth Group.  I spent my summers attending church camp and went on many retreats.  My grandfather, aunt and uncle sang in the choir and my grandmother was the cake baker for the monthly women's meetings.  I remember her cooling the cakes on  her porch.  I loved when she would hand me the icing and allow me to help with the decorating. Faith and family intertwined.  Home and church did too.  It was warm and loving and smooth.

Frequently our extended family would gather after church service for Sunday dinner.  Conversation flowed over baked hams and Yankee pot roast.  Following dinner, the adults would talk over coffee and the children would play outdoors on the acres of land our family shared. Still in my church clothes,  I would disappear into the woods with my cousins for hours.

My church was my sanctuary.  I felt at home there.  Safe.  Happy.  I remember sitting alone and enjoying the quiet of the library and hiding with friends and laughing in the choir room.  I remember chasing my cousin around the church play yard and hopping the fence to catch him.  My new dress caught on the chain link fence and ripped.

I was baptized in my church.  Confirmed in my church.  I moved out of state, but returned home to be married in my church. I've smiled during joyful occasions and  I've sat through somber funeral services of beloved family members.

My children are being raised in church as well.  Like me, they attend Sunday School and sing in the Christmas Programs and have a presence there.  Like me, I hope it is a place where they find warmth and comfort and peace. As an adult, I enjoy the connection and the fellowship I find within the church community.  I feel good when I am there.

My faith is not ideal. I falter and I waiver in my imperfection. At times, I question it.  I would like to find a peace in knowing that things with M are how they are meant to be. I would like not to question, "Why M.  Why our family?" I would like to know that although I may not understand the path I have been put on, this path, chosen for me, will take me to where I need to be. Many Sundays I have sat in service and looked at those around me and have wondered how they have been able to receive the calm understanding that faith offers and why I continue in my struggle not only to accept faith, but to understand it.

Mr. A and I have discussed this on many occasions throughout our marriage and especially since the birth of M.  Mr. A references a scene from the movie Angels and Demons:

Tom Hank's character, Langdon, is seeking admission into the Vatican’s archives, but needs the priest's  permission. Prior to rendering a decision, McKenna and Langdon have the following conversation:
McKenna: Do you believe in God, sir?
Langdon: Father, I simply believe that religion…
McKenna: I did not ask if you believe what man says about God, I asked if you believe in God.
Langdon: I’m an academic. My mind tells me I will never understand God.
McKenna: And your heart?
Langdon: Tells me faith is a gift that I have yet to receive.

There are times when I am strong and secure in my faith. Other times, the final line of this dialogue, taken from a Hollywood movie, best describes how I feel. 

Like an excited child at Christmas searching under the tree, I hope one day to find this gift and to receive it. 

Saturday, February 25, 2012


Mr. A and I recently began marriage counseling and this is a very good thing.  The divorce rate in the United States hovers at around 50%, which is quite staggering. For parents raising a child with special needs, that number jumps to 80%. Mr. A and I are determined not to be included in that number.  We've been together for 22 years and married nearly 14, a number some may consider a record.

The therapist's office is soothing. The decor is calm and neutral.  The furniture, worn but by no means shabby, is comfortable.  One entire wall is filled with books and there are a variety of plants.  Pieces of art of Spanish influence dot the room.  Table lamps soften the light. I have no doubt careful consideration was given when planning the design of the office.  I am comfortable here.

I have taken in these details because this is where my eyes go when direct eye contact becomes too difficult for me.  When looking into my eyes makes me feel naked and vulnerable.  It is then that I focus on the titles in the book shelf, or look at the way a plant's leaves lay themselves over the entire length of that book shelf.

The questions casually asked of me yesterday made me uncomfortable.  Emotional chords inside me that I would rather were left alone were struck.  Emotion raw and real was bubbling too close to my surface and I chose my words carefully, deliberately.  When I could hear the shakiness in my voice, I would pause and turn away and take a deep breath before I continued.  

I stayed composed and I did not break.  I did not crack.  I held it together.

I am sure he saw me in a different light.  I am sure that he saw my white-knuckled grip on control and assessed that I needed to let go.  I have no doubt that he viewed  my unwillingness to crack as a weakness and not a strength.

He asked me what I felt I needed most in my life. The answer was simple:  Ordinary.

All I want is to be able to enjoy dinner together as a family, take a day trip, go to the grocery store or the library, go on a date, go to church, take a vacation ...all without having to move heaven and earth to do it.  I want to do the mundane, everyday things without so much planning and process. I don't want to feel like everything is so hard.  I want to feel free to exhale.

I think that everyone who has sat on his couch has been asked this question.  I wonder if we all answer in similar fashion.  Is the answer that we all want what we think other people have?

Tuesday, February 21, 2012


Next to me, as I type, is a stack of bills.  Actually, there are two stacks.  The first stack is the usual stuff....electric bill, car insurance, heat, credit card.  The ordinary household bills you might find in any home that are a part of everyday life.

The next stack is different.  This is my small mountain of medical bills.

Quest Diagnostics:  $213.00
ER visit:  medical supplies:  $88.45
Office Visit:  High Complexity:  $86.00
Outpatient Services, misc:  $155.24
Laboratory & Ultrasound:  $586.70
Office Visit & Consultation:  $346.89

These are the ones I have opened so far.  There are many more to open but I had to take a break and walk away.  I remember when Miss J. was younger and learning to add large numbers.  Because the numbers were  so large, she would get intimidated and would stop working the problem.  That is me now.

I know there are more bills in the mail, finding their way to my house.

In November, we had extensive genetic testing done.  Years ago I had decided to get off the testing rollercoaster and take a step back from the chaos that brings into our lives.  The only reason I agreed to put our family back on this wild ride was because of the changes we were noticing in M.  

Changes his neurologist called:  Subtle Functional Deterioration.

The changes in M have been subtle, so small that you won't notice them day-to-day.  Changes we can only see when we compare M to how he was many months prior. They are so slight, so subtle that initially we brush them off.  We chalk them up to being tired.  A growth spurt.  Recent illness.  But the months pass and these subtle changes do not return to M's baseline normal.  They stay with him and we begin to run out of explanations for them.  We mention it  in passing to the pediatrician.  We give it some time to "wait and see." More time goes by and then we are referred back to the team of "Ologists."  Tests are ordered.  Diagnosis' considered.

For M, we've noticed his gait is off.  His stance is wider and he's begun toe-walking.  His balance varies and he falls more.  His vision is changing.  Yearly eye exams have been upped to every three months.  He's developed a stutter and is having difficulties chewing.  He sleeps more and fatigues easily. The grand-mal seizure.

I observe him, trying to put together pieces of a puzzle that continues to elude us.  I try to see him not only with a mother's eye, but also that of a scientist.  Without emotion,  With logic and reason.  

His neurologist wants to do more testing.  His possible explanation: 
Spinocerebellar Atrophy.

There are more than two dozen types.  
All with differing ages of onset.  All with different prognosis.  
All genetic.  All degenerative.

The geneticist tells me there is no panel of tests for SCA.  Testing for each type would be done, one by one, until a diagnosis was ruled in or ruled out.  She adds that it is expensive and may not be covered by insurance.

The biggest gift I have received on my journey with M is to comprehend that when a doctor suggests "possible" it does not mean "probable."  In the early days with M, I would hear of a 'possible diagnosis' and it would send me into a tail spin.  I have read up on it and I do see some similarities, but not so much that I have convinced myself that this is the diagnosis.

I worry and people tell me not to think about it.  As if it were that easy.   Really?  All I have to do is just not think about it and all is well?  Sweet.  I do think about it from time to isn't as though I walk around all day consumed with worry....but it does cross my mind.  I've read the words on paper and I have heard the doctor speak them.  They are on my brain.  It is like a pebble in your shoe:  the more you think about it, the more it bothers you.  But in this case, I can't just toss the pebble out.

Life with M is unpredictable.  We enjoy periods of smooth sailing and calm waters and we push through chaos and choppy seas.  Life is choppy at the moment. and I am getting tired.  Tired of appointments.  Tired of fighting with the insurance company.  Tired to tests.  Tired of the driving.  Tired of the bills.  

When I am tired and weary and overwhelmed and angry and scared, I draw inward.  Like a bird in a nest, I surround myself with a shell and shut the world out.  

I create a space between myself and the world to give my brain a chance to rest.  From the distance I can hear Mr. A calling to me, "S...let me in.  Please don't shut me out.  Let me be with you." 

Friday, February 10, 2012

What A Day.


The time on the clock read 7:40am.  M is usually up by now, but he had yet to emerge from his room.  His bus would be arriving in just thirty minutes. If he was going to make that bus, we were going to have to hustle. M loves to go to school and for him to sleep this late usually meant one thing:  He was sick. I made my way to his room, hoping this was not the case.

I crept into the darkened room to find M, covers thrown off, curled into a ball on his bed.  Even from across the room, I could hear the gurgle and crackle in M's chest with each breath he took.  M was not going to school.  Not today.

Mr. A, Miss J and myself had all been recipients of the latest cold to go around.  This was evidenced by the cacophony of sneezes and sniffles and wadded up tissues and empty bottles of Nyquil.  We'd experienced the annoyance of the common cold, but for us, it was little more than that:  Annoyance.

But not for M.

M's chest gurgled. He wheezed.  I reached down to touch him and felt the heat radiating off his body.  The thermometer read 102. He looked at me and said, "Mama, make me better."

I am a seasoned mom to a child with special needs who is prone to being hit harder by infection than a typical kid. I knew what to do. I checked his chest for retractions and his throat for tracheal tugging.  None.  This is good as it meant M was moving air without exerting too much effort.  I checked his lips and nail beds.  Pink.  Not blue.  His oxygen levels must be good.  I got a good listen to his breath.  No high-pitched stridor.  Also good; M probably didn't need steroids.

I called the pediatrician and gave him the low down.  He said to treat the fever aggressively and keep M calm to hopefully prevent another seizure.  I was to bring him in that afternoon, unless of course his breathing became labored.

M is whiny and clingy and feels lousy.  He cannot figure out how to get himself comfortable and isn't sure of what he wants or needs. When Miss J arrives home I tell her to get in the car so we could take M to his doctor's appointment.  We pile in the car and drive off.

The doctor examined M.  His lungs were indeed soupy.  Because M has such low muscle tone, he is unable to produce an effective cough to expel the mucus that is sitting in his lungs.  Instead, it sits there, a potential breeding ground for infection.  The pediatrician said I should practice chest thumping exercises on M.  I was to lay M on his side, and with a cupped hand, firmly thump his back and chest to loosen the phlegm in his lungs, making it easier for him to expel. M hates this.

A blood test is done and  M's white count is 3.0.  A normal white count for a child his age is 4.0-10.0.  Anything under 3.5 is considered leukopenic.  M's count meant that he was not producing sufficient white cells needed to fight off infection.  M is vulnerable and is given high doses of antibiotics.

An hour later we were in the car heading home.  I pull into my driveway to find my front door wide open.  My two dogs, gone.  I did not panic because I immediately knew we had not been the victims of a break in.  My head snapped back to look at Miss J who simply said, "Oops.  I guess I forgot to shut the door when I got home."  (Miss J is many wonderful things. Many, many wonderful things.  But she is the most scatter brained person to walk this planet and lately the girl has been leaving any and all doors open:  front door, back door, car door, refrigerator door and even hamster cage door resulting in the hamster being MIA for three days.) I'd had enough of telling this child to shut doors.

I have a good idea of where my dogs might be and I drive to the park.  Sure enough, they are there.  A stranger is playing fetch with them in a wide open green space. Our mild winter and warmer than usual temperatures have led to an early thaw.  The wet green space resembles a swamp.  My dogs are very happy and very muddy.  Without any choice,  I pile the dogs into the car, next to the sick child and the now-crying child. As we make our way home, we are stopped by two neighbors asking me if my dogs got out because they thought they saw them running down the street.  Sigh.

We get inside and as I de-mud the dogs, I give Miss J yet another lecture about paying attention.  I am interrupted by the doorbell.

I peer out the window to see two police cruisers in my driveway and two uniformed officers at my door.  Apparently a concerned neighbor thought my house had been robbed and called the police.  I opened the door, and announced to Miss J, "Oh honey...there is someone here to see you!"  I let her explain the story to the officers.  They are kind to her, but I secretly wish they would have shaken her up a bit more.

I am tired.  I am worn.  I have had it.  I want nothing more than to crawl into my bed and pull the covers over my head.

Monday, February 6, 2012

Crossing the Finish Line Together

This week, the schools in my community will celebrate DisAbility Awareness.  It is a wonderful idea, both for children with special needs and typically developing children alike. 

It wasn't until I was an adult that "Disability Awareness" was something that was discussed.

The school I attended for most of my elementary school years was a big and beautiful building built at the turn of the century. It had high ceilings, tall windows and hardwood floors that were waxed to a glossy finish each year for the start of school in September. I still remember the way the school smelled when I walked through the front doors each September.   At the rear of the school there were doors with concrete signs above them labeled, "Boys" and "Girls".  In the early years children would line up by gender and would enter through the basement of the school and traveled through the bathrooms, which were located next to the boiler room.  It was rather dark down there and I found it scary to go in there.

Though I have no set foot in the school in more than thirty years, I still remember every inch of it clearly.  I can still mentally walk through the front door and ascend a flight of stairs and turn left into the office.  I can remember the location of each of my classrooms.  And the music room.  The library.  The 'multipurpose room'.  I have traveled almost every inch of that school except for one: to this day, I have no idea where the "Special Ed." kids were kept. I've never been in that classroom and have no recollection of passing it in my daily school travels.

As a parent of a child with special needs I wonder how these children were able to navigate through the building.  There were no elevators.  No handicapped accessible bathrooms.  No ramps.  I wonder how the children made their way around.

When I was a child, there were no children with special needs in my classroom at school.  Or on my bus.  Or in my Sunday School class.  Or in my day camp. Or playing outside or riding bikes after school. The children with special needs were tucked away in their own small classroom, far, far away from mine.  I did not sit with them at lunch, play tag with them at recess or trade snacks with them at lunch. I had no interaction with them at all.

As a child,  I was afraid of these children.  Some looked different.  Some made odd noises.  Others yelled. Some rocked back and forth and others walked in a way that was very strange to me. I remember one boy who never said a word and whose face always wore a vacant expression. He always wore a knit winter hat, even in the warmer months. My childhood logic told me that there must be something seriously wrong with these boys and girls.  Perhaps I could catch what they had....that must be the reason they were kept far away from us.  It must be why I never saw them in the library, or in the lunch room, or at recess.  I know they were called the "retards" and their classroom was called , by some, the "Ree-Ree Room."  

No one ever talked about these children so I never asked questions.  I figured we weren't supposed to.  I just made sure to keep my distance.

Times, thankfully, have changed and I am so grateful that M is growing up in a different world. 

M's school day is spent mixed between the general education classroom and the special education classroom.  His special ed. room is not hidden away from the rest of the school.  M actively participates in both rooms.  He has friends in both rooms.  M attends music, art, gym and assemblies with his general ed. peers.  He goes on the same field trips.  He eats lunch with them in the cafeteria and plays on the same playground with them at recess. 

When I pick M up at school, there is always another teacher, child or parent who greets M by name.  Frequently when we are out grocery shopping or eating in a restaurant, someone will come up to greet M.

M is well known in his community.  At times, M's popularity even makes Miss J slightly jealous.  "Why does everyone make such a big deal about M?  They treat him like he's a rock star!"  

M's experience growing up is vastly different from that of the kids with special needs when I was a child.  I am grateful for all the work that is done to educate other about kids like M through things like DisAbility Awareness Week.

 In honor of that, I am sharing an essay that is a favorite of mine and touches my heart deeply. 

May everyone have a hand to hold when needed. 
May everyone be support to another person in need.

Crossing the Finish Line Together

Based on a true story which happened at the 1976 Special Olympics in Seattle, Washington.
Years ago at the Seattle Special Olympics, nine contestants lined up at the starting line for the 100 yard dash. At the sound of the starting gun, they all started off in their own way, making their best effort to run down the track toward the finish line. That is, except for the one young boy who stumbled soon after his start, tumbled to the ground and began to cry. Two of the other racers, hearing the cries of the boy who fell, slowed down and looked back at him. Then without hesitation, they turned around and began running in the other direction—toward the injured boy.
While the other contestants struggled to make it to the finish line, the two who had turned around to run in the other direction reached for the boy and helped him to his feet. All three of them then linked arms and together they walked to the finish line. By the time the trio reached the end, everyone in the stands was standing and cheering, some with tears rushing down their faces. Even though by turning back and helping the boy who fell, they lost their own chance to win the race, they all had smiles on their faces because they knew they had done the right thing.

Thursday, February 2, 2012


M has speech on Thursdays and I have become quite friendly with the mom and daughter who have the  appointment  immediately after ours.  M and I look forward to leaving the therapist's home and seeing them in their car waiting for their turn.  It is a highlight of our day.

Today I could see in my friend's eyes that she was having one of those days.  She didn't have to explain it to me...I knew what she was feeling.  I think that most parents of special needs children can understand this.  Sometimes everything seems overwhelming.  It is like being given a some popsicle sticks, a box of tissues and Elmer's glue and being told to construct a boat that is sea-worthy and to circumnavigate the globe in said boat. There are days when everything is daunting.

Days when we just wonder....

Ever parent wonders about their children. It comes with the territory of being a parent.  Parents think of their child and wonders...
...if they will decide to play soccer or little league.
...if they will play piano or violin or both.
...if they will excel in math or language or science.
...if they will have a lot of friends and be popular.
...if they will attend the Ivy League.
...what they will major (or double major)  in.
...what field they may work in
...who their future spouse will be many children will be raised in that union.

Sit in any cafe with two moms sharing coffee or on a park bench watching the dads coaching soccer.  You'll hear about what marvelous things their child did.
How they made straight As and were accepted into the gifted program.
How they display unparalleled talent in soccer, baseball, track and fencing.
How their child made the dance squad.  Writes amazing poetry.  Is the next Monet.

Parents will comment on how much time they spend shuttling their child from one sport and activity to the next.  How they are constantly schlepping their children to birthday parties and playdates.

I was once eating lunch in a restaurant by myself and overheard two mothers talking about the social dynamic of their daughter's lives.  One mother was quite upset because her child had not been invited to TWO recent birthday parties.  The other mother agreed to do some investigation work to see if she could discover a reason why, although both mothers were already fairly certain that this was orchestrated by yet another mother and her daughter out of jealousy.  The first mother casually mentioned that perhaps a few sessions with her own therapist might help her daughter work through some of these negative feelings.  The next topic of discussion was if the women would participate in Tuesday yoga class or the Wednesday yoga class.

Parents of kids with special needs think differently.
We wonder....
...if our child will find a way to communicate...through voice....sign....augmentative device...or eye gaze
...if our child will ever walk...or crawl...or sit up....or roll over.
...if our child will ever feed himself with utensils...or by fingers...or if they will ever eat solid food.
...if our child will ever be able to write a sentence...or their address...or their first name....or hold a pencil
...if our child will ever read a book...or their own name...or be able to identify the alphabet.
...if our child will ever sleep through the night...sleep in a real bed....sleep without a monitor
...if our child will ever have a family of their own...a companion....a friend.
...if our child will ever enjoy a family amusement park...a movie...a circus..the beach... the park.
..if our child will ever kick a ball....catch a ball...hold a ball...or even want to.
...if our child will ever have a favorite television or person in their life.
...if our child will ever understand Christmas...or Hanukkah...or Halloween...or April Fool's Day or their own birthday
...if our child will ever make a phone call...mail a letter...change a lightbulb...make a sandwich.
...if our child will live independently...or in a group home....or with us forever.
...if our child will always wear elastic waist pants...velcro shoes...tagless cotton shirts...seamless socks.
...if our child will ever be able to wipe their own backside after using the toilet or if they will toilet train at all
...if our child will ever be able to accept the feeling of sand on their feet...sun on their face...wind in their hair...grass in their fingers.
...if our child will ever enjoy a fireworks show.
...if our child will ever be able to handle loud places...strange places.
...if our child will get the joke, or will always be the butt of it.
...if our child will know the difference between laughing with you and laughing at you.
...if our child will ever put on her own
...if our child will ever be able to fasten his own seatbelt...turn on the faucet...brush his own teeth.
...if our child will ever be invited to a birthday party or on a playdate.
...if our marriage can survive the stress of raising a child with special needs.
...if we will lose connection to our spouse...our family....our friends.
...if our typical children will grow to resent us.
...if we will be able to manage financially.
...if we should pick paying for therapy for our special needs child or dance lessons for our typical child.
...if we will ever take a vacation....go to a nice in a nice restaurant....go on a date.
...if our friends think we are too depressing...too crabby...too tired...or just too hard to understand
...if we will be able to continue to be able to handle comments from strangers that are rude, unjust, and hurtful
...if our community finds us disconnected...uninvolved...aloof.
...if the insurance companies are conspiring against us
...if they insurance companies think that by making things difficult that we will simply go away.
...who is really in our corner long we can ignore our own physical & mental health needs.
...if our child will reach the lifetime maximum insurance benefit before they are ten years old.
...if our child will ever get a diagnosis
...if a diagnosis will make insurance companies deny our child or if not having one will prevent our child from
   receiving services.
...why people think that our child receiving special education services somehow "takes away" from what their
   child receives.
...why people feel that it is okay to park in a handicapped space without a placard "just for five minutes."
...who will look after my child if I die.  Who would want my child?
...if our typical children wonder if the responsibility of looking after their special needs sibling will ever fall on
   them. long our child will live.
...if our child will go blind, or will require an organ transplant or if their ability to walk will deteriorate.
...if we will find the strength to get through another day.
...why things sometimes seem so hard, so unobtainable, so out of reach.
...where God is.

We wonder:  Why him?  Why her?  Why me?  Why?


Wednesday, February 1, 2012

DisAbility Awareness

We are fortunate to reside in a school district that truly makes an effort to embrace kids of all abilities.  Our special education programs go above and beyond to meet the needs of children like M.  Like many, we live where we do because of the school district.  Our family dollar is stretched thin in order for us to live where we do, but knowing my children are receiving a fine education makes it worth every cent.

Each year, our school district celebrates (read:  CELEBRATES!) DisAbility Awareness Week.  An entire week is dedicated to educating the children about people who are 'differently abled.' (For those of you not schooled in special needs vernacular, this is a great PC term you can stick in your back pocket.)  The children are educated through books and videos, activities and guest speakers.

Yesterday I received an email from Miss J's teacher letting me know that Miss J had volunteered me to come in to speak to her class about M.  She even told her teacher that I could bring M to her class. (How's that for a Show and Tell?)  The teacher ran this idea by me and I happily agreed.

I felt proud if Miss J.
Proud that she would want me to come in to her class to discuss her brother.
Proud that she was willing to make herself vulnerable to her classmates. (Being nine and in the fourth grade and having a brother with significant special needs can be the Achilles Heel for insensitive classmates to pounce on you.)
Proud that she wanted him to come in to her class to meet her peers.  (They attend different schools so most have not met M.)

DisAbility Awareness does not happen for a week in Miss J's life.  Miss J lives it every day. One of the greatest gifts that being raised with a sibling with special needs has given Miss J is a beautiful, loving, open and accepting heart.  Miss J is sincere and genuine and real in her desire for everyone to feel included.  She understands that acceptance does not mean that everyone is treated the same, but rather it means that everyone is treated fairly.

As a family, we have always been very open about M.  We encourage people to ask questions about M.  Growing up in this open fashion has made Miss J very comfortable talking to others, tactfully and respectfully, about other disabilities.

One day, I was in a mall with the kids when Miss J was about five and M was three.  I was pushing M in his wheelchair while Miss J skipped along beside us.  She saw a boy, perhaps a few years older than she was, who was blind and using a cane.  He was an a school outing and his aide was with him.  The boy took a seat on a bench and before I knew it, Miss J was seated beside him, striking up a conversation.

She asked, "Does that cane really help you?"
He explained the cane and even did a demonstration for her.
"Would you like to try my cane?" he asked her.
"Yes!" she exclaimed.

The boy stayed on the bench while Miss J attempted to navigate the mall.  Now imagine the sympathetic looks I happened to be getting when shoppers saw me with my daughter using a cane for the blind and me pushing my son in his wheelchair.

DisAbility Awareness is close to my heart for very obvious reasons.  The biggest being is that it teaches that even though we may live vastly different lives, those lives can be lovingly, beautifully, colorfully, woven together.