life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

A Post On Progress March 24, 2014

… His eye contact and response to his name were inconsistent. He was mostly silent except for occasional unintelligible sounds. At one point he laughed with no apparent stimulus. He mostly pushed his train back and forth as he looked at them closely. He pushed the examiners hand away and made vocalizations to show discontent. Towards the end of the evaluation he imitated some pretend play after repeated demonstration. He understands “no” and says “dada” discriminately. He could not point to body parts or pictures in a book …

 

The above was taken from Jays Neuro-development Evaluation done on 5/3/2011 – He was 3 years and 4 months old.

 

It’s easy to look at Jay now and forget how much progress he has made and just how quickly it has happened. The growth in both what he understands and how he expresses himself has been staggering. It quite literally takes my breath away when I read back on reports like the one above. I remember that boy. The one who pulled us around and then threw our hand in the direction of the thing he wanted. The boy who never showed any interest in playing with other children.  The boy who had an IEP with goals such as “Jay will write a + and an O.”

 

That same boy, less than 3 years later, is doing math.  Math! Sometimes in his head – such as 2 + 4 – or when necessary on paper. He’s reading simple books and he’s drawing pictures that are easily recognizable. His latest masterpiece was of a birthday party. There were people in party hats and cupcakes. The boy wants to do whatever his big brother is doing and says “Mom, come and look” for no other reason than to share something with me. He misses nothing. He’s fully aware and engaged in the world around him. He plays tricks on people and apologizes when he accidentally hurts someone. He loves. And he loves being loved. He’s wiley. He pretends not to know how to do things so that his big brother will do them for him.

 

This boy, the same one who “Towards the end of the evaluation he imitated some pretend play after repeated demonstration” comes up with new inventions every day. From using blankets as bridges to using a ruler as a sword. Where I see a hat, he sees a nest for Easter eggs. Where to me, Legos are just a pile of tiny plastic things that I step on, he uses them to build letters and spells out words on the table.

 

The other day, I asked him not to climb on a table because it is a little shaky and I was worried that he would break it.  (Yeah, we need a new table).  A few days later I heard him telling the cat to “get off the table. It’s broken.”

Two mornings ago, I sent him to brush his teeth. To my surprise, he came to me and said “I brush it awready. Smell.”  Then he opened his mouth wide.

OMG!  The words. The understanding. The projecting. The only thing he probably doesn’t understand is me and my emotions. He’s probably confused by my excitement over every little thing he does. He probably wonders why I hug him and get teary each time he introduces me to something new that he knows.

 

Over the weekend, I needed to take Jay to get new passport pictures so we went to Walgreens. When I tried leaving the store Jay planted his feet and wouldn’t move. I was able to get him to tell me that he wanted some sort of treat. He picked out an Easter egg filled with candy and Ace chose chocolates made to look like carrots.

Yesterday, Jay was playing with the remaining carrot and feeding it to a toy rabbit. Ace, who was well within his rights to do so, took the carrot from him and ate it.

Jay melted down hard.

He and I huddled under my comforter and did what we do when he needs time to calm down. In those moments, talking to him is not helpful. Explaining is pointless. We just have to give him time and wait it out. He and I stayed there like that for a few minutes. Hot and hugging while his breathing evened.

Then came, “The carrot is gone. What am I going to do?”

I told him that I would get him carrots tomorrow. I asked him if that would be OK. Concepts like yesterday and tomorrow have never seemed to make any sense to him so even as I was saying it, I was already trying to think of another way to explain it to him.

“No. What am I going to do NOW ?”

With that question, I was out of answers. I was stunned and happy at his clarification. It took everything in me not to pack everyone up and drive to the store to get more carrots right then and there. After a while, he came out of the comforter cocoon and went to play with Ace. I ended up getting some really cute pictures of them taking turns pretending to meditate while the other jumped from the edge of the couch onto the meditator to ruin his zen. Make sense? Didn’t to me either but they were having fun.

 

These days, I write about Jay and I casually throw out things like … then he said and then I said and then he said.

 

This boy who “was mostly silent except for occasional unintelligible sounds” is constantly harassing his brother with requests for help … to turn on lights or open juice pouches or to fix a broken toy. Every day he peppers me with questions or comes to me for comfort or to play.

 

People may think I let him get away with too much. People may think I need to be tougher on him when he is being stubborn or acting spoiled; which I admit, he does on a regular basis.  But he has worked so hard. He continues to work so hard. I can’t help but give him breaks. This world we live in is hard for him. If hugging him and picking him up and giving him skittles or Easter eggs makes him happy then, he’s gonna get that from me.  It’s my way of rewarding him and making up for the tough things he deals with and doing such an awesome job of it.

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One Response to “A Post On Progress”

  1. it really is just so amazingly wonderful. I remember one of the first posts I ever read of yours you were celebrating that he had said a word you knew meant juice and that he was asking for juice. Look at him go!


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