A mommy minute

A note from lifeofthedifferentlyabled

I have asked Jo to write what it is like to have a special needs child and she so kindly wrote the following

I’m Jo, mom of six – year – old Monkey Boy.  He’s a bright, happy little guy who enjoys Star Wars, baseball, hockey, playing his drums, and learning about sharks.  He plans to be a marine biologist when he grows up, but he definitely has a future in writing or stand – up comedy if he changes his mind.
     In addition to all of my son’s wonderful qualities, he also happens to be a stroke survivor.  Indeed, you read that correctly – my young son had a stroke, which was diagnosed shortly before his first birthday.  As a result, he has left – sided hemiplegia, a form of cerebral palsy.

     I had a healthy, mostly uneventful pregnancy with Monkey Boy.  He decided to split the scene five weeks before his due date, but he was a whopping twenty inches long and almost seven pounds at birth.  His APGAR scores were 9/10, and he never even required a breathing treatment.  My husband and I brought him home from the hospital a few days later, bursting with pride and very much looking forward to raising our firstborn.
     Fast forward several months.  Monkey was a sharp little guy and a chatterbox from an early age, but I became concerned when I noticed that he wasn’t using his left hand.  He instead kept it in a fist close to his body as he navigated through his days of babyhood using his right hand alone.  He also started to slouch to the left side when he was sitting, and seemed to have rather poor balance.  I booked an appointment with his pediatrician, who referred us to a pediatric neurologist.
     Within the blink of an eye, my tiny son was lying in a hospital bed with wires stuck to his body and grim – faced doctors all around him.  When they used the S – word for the first time, my world came to a screeching halt.  I had an overwhelming urge to grab my baby and run as quickly as I could out of the hospital, far away to where we could escape the bleak diagnosis. 
     “Will he have a normal life?” I somehow managed to ask amid my shock and devastation.  The neurologist assured me that despite the stroke, Monkey was a very intelligent little boy who would most likely not be affected cognitively.  In the same breath, he continued, “You two are still young.  You can always have more children.”  To say it was a slap to the face would be a gross understatement, and we promptly made the decision to drop him as our primary neurologist. 
     Fast forward five years.  Monkey is now an active, quick – witted six – year – old who never ceases to keep me on my toes.  He is a very bright mainstream student who not only walks, but plays sports and has earned his yellow belt since starting karate two months ago.  He has gone from having virtually no use of his left hand to having about 90% use, and a recent surgery has freed his left leg from the tightness that once hindered him.  I am not too humble to say that he is an absolutely amazing child, and I am indescribably proud to call him my son.
     While raising a child with special needs is quite rewarding, it also has its challenges.  One of the biggest problems is the discrimination we often face.  When it comes to a physical difference, the individual tends to wear his disability on his sleeve.  This often results in strangers noticing the weakness well before they notice the strengths.  Unfortunately, this often results in people making very false assumptions about my son.  Instead of realizing that having one area of weakness does not mean that he is affected in all aspects of his life, they jump the the conclusion that he must be globally delayed.  Let it be known that having a physical difference does not mean that the person has cognitive delays.  Cerebral palsy affects motor skills; it does not necessarily affect intellect or learning ability.
     I have had people ask me before saying so much as two words to Monkey, “So, what is wrong with him?”  Let me clarify a few things.  First, there isn’t a single thing wrong with my son.  He may have some mild physical differences, but there is nothing wrong with who he is as a person.   Secondly, it is incredibly rude and offensive to inquire about a person’s area of weakness the the moment you meet him.  Imagine an overweight person being approached by strangers several times a day and being asked what’s wrong with him that causes him to be big.  That would hardly be considered socially acceptable.  Similarly, it is inappropriate to treat my son with the same disrespect.  He is a whole person, and individual with his own set of likes, dislikes, strengths, and yes, weaknesses.  He deserves the chance for people to get to know him before they ask personal details about his medical history.
     We also have quite a few people try to give Monkey special treatment due to his diagnosis.  They are the waitresses who single him out among the typically – developing kids for the free ice cream in the restaurant, the shop owner who chases us down to offer us free stickers without offering them to anyone else, and the stranger on the subway who cheers and compliments Monkey on his great walking when he is in fact walking the same way he has since he was a toddler.  They are often the same people who give us the infamous pity stare, and say such things as, “Bless the poor little thing.”  While I do appreciate that they are trying to help, they in fact cause nothing but harm to my son and me.  My son is neither poor nor a little thing; he’s a person, first and foremost, and he has more going for him than most people I know.  The free desserts and stickers will not change the fact that he has cerebral palsy; they will only make him feel singled out and separate from his peers.  He has also never once been fooled when people cheered for him as he walked.  He knows that using his left side is a bit more challenging for him than it is for others, and he’s OK with it for the most part.  When he does get frustrated, the well – meaning yet patronizing strangers will not help him feel any better by insisting that he’s doing a great job when he’s struggling. 
     In short, what children with special needs and their families really want is for them to be treated as children first.  Realize that they are not walking (or rolling) diagnoses, but human beings with their own personalities and talents.  They are neither brave heroes to be put on pedestals nor wretched little creatures who need our pity.  The greatest gift you can give them is to treat them as what they are at the end of the day – typical, capable children. 

you can read monkey boys blog

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One Response to A mommy minute

  1. Deb says:

    Very well said. Thanks for sharing!

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