Life On The B Side

Taking all that life throws at us one moment at a time

A Wish For Those Still Waiting February 25, 2014

We’ve come sooooo far.  Jay and us.  The way we all interract.  The way we can ask him questions and he can answer.  The way he will ask Ace to play with him or me for “pouch juice”.  The way I can put my cell phone on speaker and he will (sort of) have conversations with people.  The way he will tell us when he wants or does not want something.  The way he won’t stop asking if he doesn’t get the answer he wants and the way he will negotiate with us.  The way he uses his cuteness to try and melt us.

 

When Jay got evaluated for pre-kindergarten, at age 2, they said his receptive communication was at the level of a 9 month old.  His expressive communication was worse.  When he got evaluated again a year later, his receptive communication was then marked at the level of a 13 month old (better but still not good) and his expressive communication was then at about the level of a 10 month old.  The whole thing was not very good at all.  It made life incredibly difficult.

 

He neither seemed to understand anything we said or did or wanted from him, nor was he able to communicate anything to us.  At one point he learned the signs for “more” and for “juice”.   They never were very effective in helping him to communicate with us.  We tried having him point to pictures; but that was also not a winner.

 

Then, ever so slowly, the interest and words and actions came.

 

I recently started reading the blog of a mom whose son is 3 now and he’s not yet talking and I have been thinking about her a lot.  She’s worried sick.  She’s angry, she’s sad, she’s tired, she’s hopeful.  Of course she is.  I was all those things too and I remember it like it was yesterday.

 

Jay hasn’t been evaluated in a couple of years so I don’t know what the experts or score sheets will say about him now compared to other 6 year olds.  I know that I’m not interested in measuring him against other 6 year olds.  I am just happy that he’s making progress and that he’s fully a part of our life and family.

 

When we went ice-skating, he got laced up and went ice-skating too.  When he had enough he used his words to let us know that he was all done and would rather go and get something to eat.

When Ace climbed up on the kitchen counter and then could not figure out how to get down, it was Jay who went running for a chair and came to his brothers rescue.

When he got a “red face” at school for running around instead of listening, the little rascal took a green crayon and coloured in the happy face and then went for an eraser and tried to erase the red face while I wasn’t looking.

Jay reads and completes his own home work assignments.

He wants to do everything that Ace is doing and wants to be a part of everything that I’m doing even if it’s just bringing in the groceries or picking Ace up from the Boys & Girls Club.  No more will he wait in the car.

He asks for permission from Ace before he climbs up into Ace’s top bunk and from me before he runs around the living room.

He brushes his own teeth and will come to me if he’s having a hard time getting the last of the toothpaste out of an almost empty tube.

Every night he asks for kisses before going to sleep and tells me that he loves me.  I waited 4 years to hear him say it and to this day I can’t get enough.

Most of the funny things that Jay does or says can’t even get written down because there’s no way to capture it with words.  You just gotta be there.  To see the face or the body movement or hear the tone and accent.  Even the way he says “mummy” is funny and it varies depending on if he’s being silly, or if he’s mad, or sad or wanting something that he knows he shouldn’t have.

 

Obviously, every child develops differently.  I don’t know what Jay will be like in another 2 years, 5 years, 10 years.  I have no clue where he will live as an adult or what he will do when he gets home from school later.

I do know how it feels to have a child that struggles to communicate and to want so badly to just enjoy your child and to desperately need them to participate in your family activities and how amazing it feels when you no longer are in that dark place of wanting, needing, hoping.

 

I hope every mom who is still waiting to hear their daughter call for them gets to hear it.  I hope every dad who wants to have his son ask him to play gets that chance.  I hope every parent who is still dreaming of the day their child says “I love you” has their dreams come true.

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5 Responses to “A Wish For Those Still Waiting”

  1. Neil Says:

    This is a wonderful post. So full of win. Your attitude? Awesome! His progress? Double awesome! Your advice for other parents? Spot on.

    And this?

    “When he got a “red face” at school for running around instead of listening, the little rascal took a green crayon and coloured in the happy face and then went for an eraser and tried to erase the red face while I wasn’t looking.”

    Well, that may be the most awesome of all. Congratulations on all Jay’s progress, and on your attitude. I home other parents find some comfort in it. I know things got better for us when we learned to stop comparing our son to other kids his age and instead start comparing him to him of yesterday, him of last week, him of six months ago. Onward and upward!

    Oh, and don’t think I didn’t notice you took him skating. Can hockey be far behind? Does he have a favorite team yet?

    • I don’t know if Jay is in a rush to get back on skates but Ace really loved it and was asking me to teach him to go backwards and to spin around. I can do neither of those things. Then when we got home he asked if he could learn to play hockey so you never know. I will have to look into it. As clumsy as he usually is, he was actually pretty good on the ice and not scared at all so that’s a good start.

      • Neil Says:

        There might be something to it. I was amazed the first time I took Ryan skating at how …. calm he was on the ice. I think there is something about the sensory environment of a rink that is very comforting for some of our kids. Anyway, if you ever want some advice on getting him started, feel free to ask! Good luck.

  2. Lisa Says:

    This is a terrific post. I love how it shows how much progress kids make over the years! It is nothing short of amazing!!

    You have a great outlook–and it is helping those boys more than you know. Way to go, Jay AND Momma!!!

  3. Jane Says:

    In tears right now. I have no idea if my little boy will ever be able to tell me that he loves me, I know he can show me by touching heads but I long for words. Talking feels like it is so far out of our reach and it feels like it is something that should be so easy! Thank you for giving me hope, I have no idea where we will be at the age of six but I’m glad that we do show signs of progress. Well done Jay, your a star x


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