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?


1 comment:

  1. Thank you Sam. Very well written. I appreciate you and all you give to your community of special needs parents in community. Love Dana