Sunday, June 3, 2012


My son is 6 1/2 years old and I feel like I don't know him.  People would tell me I'm crazy, that he's my boy and I do know him so well.  And I hope that's true.  And I hope I'm just putting way too much stock in speech.  You see, kids with Down syndrome are delayed in almost every way, including speech and communication.  Jack's speech, in general, is unintelligible.  He has only a handful of words that a stranger would comprehend.  And when he really wants us to understand what he is saying, he perseveres like no one I know.  And he doesn't lose patience with us.  I don't know how he couldn't.  A fine example is the dozens of times he would say, "Na na na" over and over.  I would just apologize up and down for I didn't know what he was saying.  A few months later it clicked:  I said, "Jack, are you trying to say Na na na na na na na na na na Batman!"  I swear his feet left the ground and he cried "YES!!!"  I get teary-eyed just thinking of that day.
 Which brings me to why.  Oh, you sweet why.  Just the other day, Jack asked me a question for the first time:  why?  And my gosh, it is the cutest why I've ever heard.  It rises in pitch and the "eeeeeeee" at the end is all stretched out.  I don't even remember what I said before the "why", but it doesn't matter.  He asked me a question for the first time in his 6 1/2 years of life!  For most parents of toddlers, or any age child for that matter, this question gets so annoying.  Brush your teeth.  Why?   Finish the peas on your plate.  Why?  We need to clean up your room.  Why?  It is endless.  But right now I am okay with that.  We need to change your diaper.  Wwhhyyeeeeeeee?  Time to get dressed.  Wwhhyyeeeeeeee?  The bus is here.  Wwhhyyeeeeeeee?

I hope I read this post a few years from now and cry my eyes out, for I can see just how far he has come.  And I can think of how foolish I was to think I didn't know him.



  1. LOVE this Debbie! You are such an inspiration, amazing mom, and very talented! I look forward to future posts! :)

  2. Have you thought about sign language? My son's language, well, lets just say in 4th grade I still needed to translate what he was saying to the doctor. For the LONGEST time we use sign language and spoken words communicate. We also found that certain songs that repeat the same tough sounds became standard on our trips anywhere, & everyone in the car had to sing. He especially struggled with L's & Y's, so every day for 3 months it was The Lonely Goatherd from Sound of Music. We were also very fortunate to find a speech therapist who realized he was pushing his tongue upward much more than the other students. We switched all of his drinking to thicker drinks (smoothies & milk shakes) through a straw to help with the back muscle development. He's now 14 & almost everyone can understand him! I hope this helps!

    1. Hi Kathy. Yes, we have done sign language with Jack since he was 7 months old. Unfortunately, he's been very lazy about it and finds his own way to tell us what he wants. He has motor planning issues, so sometimes a word will come out clear as day, and then you never hear it again the same way. For a few years we saw a specialist who did a lot of oral motor work with Jack, but the cost and travel (5 hrs. round trip) got to be too much. Just recently his sounds are becoming much more clear. I think some of the programs on the iPad have been extremely helpful. It was just so great to hear him ask me a question, using the correct context. We'll get there . . . . .