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What's It Like?

"What's it like to have a grandchild with Down syndrome?"  "Will he be able to go to 'regular' school?"  "Will he ever talk?"  "Does he know who you are?"  And the first comment many people say when they first hear of Wes's diagnosis: "Oh.  I"m sorry."

These are all perfectly legitimate questions and comments that I've heard over the past two years.  I take all of them as a way that people show they are interested and caring.  But I'd like to clarify and explain some things about our little guy.

First and foremost, the diagnosis of Down syndrome is not a curse or something to be sorry about.  Honest.  Wes has developmental delays - not developmental lack of abilities.  There is a big difference.  And just so you know...he is very, very smart.  We were just there over the holidays and his communication skills blew me away.  No, he's not talking audibly yet at two years four months.  But he is communicating!   Wes knows over 50 signs, but lots of children his age know signs.  What impresses me so much is that he actually uses those signs to communicate...as opposed to just imitating or displaying a sign when asked.  He will ask for water when he's thirsty, ask for a pbj sandwich by signing "eat sandwich" when he's hungry, tell you "all done" when he doesn't like the song you're singing, and ask for music by signing music at me (I'm supposed to sing), or pointing to the DVD player or stereo.  He communicates.  He even came up with this little game where he signs, "Night-night, close the door."  Meaning?  Leave the room, close the door, wait a few minutes, then go back in and say, "Good morning!"  This is OMG cute!

Wes's comprehensive vocabulary is at or above that of typical children his age.  ("Typical" here means children without the diagnoses of Down syndrome.)  I ask him if he wants to play a word game, and he gets excited.  I can then say, "Where is the table?" "Where is the clock?"  Where does Malin live?" and he knows exactly what I'm saying and the answer to each question.  He shows me by pointing.  He can tell us that he wants to visit the neighbors who have a gold fish pond by signing "fish" and pointing outside.  Amazing!

To top it off, Wes knows exactly what he wants and doesn't want.  If he wants music, you better pick songs he likes, because otherwise you will get the "All done" sign over and over.  And his favorite?  The Beatles.  He created his own sign for the Beatles and asks for them regularly.  We have no clue where he got this sign, but he is consistent with its use.  He knows all the motions to many children's songs that he's learned at his weekly music class.  He doesn't like Face Time and tries to "swipe" to the next people when we try.  He loves looking at pictures in anybody's phone and will swipe really fast on the ones he doesn't care for.  And he positively loves books!  He actually knows the words for frequently read books and can sign words for upcoming pages right before you get to that page.

Does this sound like a child who is lacking in ability?  No.  Not to me either.  So, will he ever talk?  Sure, in his own time...probably around age 3.  Will he go to "regular" school?  Of course!  He will be evaluated and have an IEP (Individual Education Plan) written for him taking advantage of his strengths and weaknesses.  It's called "inclusion."  He will spend at least part of his school day in a classroom with typical children (see my last post) and part, probably, with educational specialists working on his weaker skills.  Does he know who we are?  Heck, yes!  What's it like to have a grandchild with Down syndrome?  It is amazing beyond description.  His communication cues are subtle; his milestones are huge; his capabilities are endless; and his emotional intelligence will far exceed yours or mine.  I can't imagine having him any other way.

Comments

  1. And when you ask him where is Grampa he points at me! :)

    ReplyDelete

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