Was that Timothy who just ran past the window?

1 - smiling    b day 2

Timothy turned 4 years old last weekend, which he continues to celebrate with a series of tasteful celebrations.

2 -- t cakeb day cake b day

We all enjoyed a trip to Indianapolis to celebrate the wedding of Laura’s sister, Mary Ann and her fiancé Fritz, which added a few more fun cousins to Timothy’s family tree.

c --The Boyz

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Last Friday morning, we were reminded once again of the age gap of our kids (19 years old, 17, and …….………… 4).

After spending fifteen minutes helping clean up Timothy’s very messy diaper, I walked outside before work and spent another fifteen minutes starting to clean up our very messy front yard, whose trees were covered in toilet paper after our house was teepee’d to congratulate our daughter Catherine for making the varsity soccer team (congrats, Cat!).

Teepee'd 2      Teepee'd

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Timothy has a good arm.  When handed a ball, he immediately throws it.  Last week, he threw Catherine’s iPhone into the bathtub (amazingly, it still works).  And recently, he’s been throwing his little toy cars into the plants next to our patio, which means that in the Fall, when most people are looking through their gardens to harvest red and green peppers, we’ll be looking through the hosta plants behind our house to harvest red and green Matchbox cars and trucks.

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pickle ball  T on swing

Laura and I were talking in our bedroom last week, and I looked out the window and saw something going past.

-Me: ‘Was that Timothy who just ran past the window?’

-L: ‘No, he should be in his room.’

-Me: ‘Well, a short red flash just went past our window.’

(whether considerate or sneaky, the flash remembered to shut the screen door behind him when he went outside)

After seeing Timothy glide past our window, we decided that it might be a good time to better secure the sliding glass door (what 4 year old has his own sliding glass door in his bedroom?  One whose parents did not expect to be converting the family ‘office’ into a fourth bedroom.)

music class    chalk 5 chalk 2

Anyway, I put a tougher lock on the sliding glass door, and used a black Sharpie to make a little sign to remind the taller family members that we’ll need to unlock the door twice.  I put the sign on the door and then walked back into the living room to find a black Sharpie cap without its pen.

Now, on its own, a lonely black Sharpie cap is no big deal.  But if the other person in the room is under the age of five, then it’s like finding a grenade without a pin.  You’d better find that pen, and fast.

In my case, the artist formerly known as TRBL had had enough time with the Sharpie to draw a map of Florida and some of the Florida Keys on our hardwood floor.

sharpie 3 sharpie  Sharpie 4

Fortunately, I grabbed the pen before he was able to complete Key West.

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It’s important for us to keep Timothy’s speech issues in perspective.

We have friends who are unfortunately in serious battles against deadly diseases.

Timothy’s speech delays are a challenge, but are not even close to that level of gravity.  Not even close.

At the same time, this is a real fight for us and we would be unwise to take it lightly.

Apraxia of speech is condition where the brain seems to be fine and the mouth seems to be fine, but the connection between the two is not working, and so the person has trouble speaking words.  It’s a really stubborn condition that requires a lot of work and focus to overcome (and some people never really overcome it), and it’s a much tougher fight when the Apraxia is paired with a disability like Down syndrome.

When talking about Timothy’s speech challenges, a friend asked me ‘are you scared?’ (about the possibility that Timothy may not ever really speak).

First of all, I’m confident that we’ll make progress and that he’ll communicate well.

But the reality is that we thought he’d be speaking well before now, and we don’t know what will happen, and so yes, that is scary.

But we’re Irish, and so we like a good fight.

And as a redhead, Timothy doesn’t give up and has more fight — some would say ‘piss and vinegar’ — than your average bear.

t orange  T at playground

T tongue  GREAT T eating w glasses -- 1-15

And I love the words of Nelson Mandela, who said, “May your choices reflect your hopes, not your fears.”

Our fears may be with us for awhile, but we’ll focus on our hopes for the bright future of one of the world’s newest four year olds.

We just need the little redhead to be as tough on the Apraxia as he is on our hardwood floors.

Grateful and Four,

The Lee’s

This entry was posted in Communication, Down syndrome, Parenting lessons -- Don't try this at home and tagged , , , , , , , , . Bookmark the permalink.

3 Responses to Was that Timothy who just ran past the window?

  1. elisaloboneese says:

    It’s so nice to learn how things are going with Timothy and you all. I’m glad you have the writer vein in you Jack!!! And that story about the maps on the hard floor was funny…… 🙂
    Sweet hugs to you all, specially for my sweet little buddy

  2. Jan Fritze says:

    Oh, my! How I miss that boy! I read your post last evening and actually dreamed of Timothy last night. I so hope we’ll be able to connect once again, either in the summer in Minnesota, in the winter/spring here in Arizona, or any other time of year somewhere in between. Love to you all!

  3. Bonnie Keenan says:

    Thanks again for sharing Timothy’s life. I love that kid!!!
    Love to all,
    Auntie Bonnie

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