Life On The B Side

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

No Limits May 26, 2011

Filed under: Life on the Jay train — The B Side @ 4:34 pm
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For the past couple of months, I’ve been having a hard time staying positive about Jay’s future.  Maybe it’s because he’s heading towards his 4th birthday and I feel like the time is going by too quickly and he needs as much time as possible to catch up.  Maybe it’s because I want more than anything in the world for Jay to talk and to thrive and to learn and to participate fully in life so I’m trying to brace myself for the possible letdown.  Maybe it’s because I had always assumed my children would be a certain way and being a parent would mean a certain thing but our life has turned out to be anything but what I assumed it would be.  Maybe it’s because I love the feeling of being surprised by him doing something that I didn’t see coming so I try not to expect it. 

It’s quite the internal balancing act … trying to be realistic and save myself from disappointment but also, reveling in and marveling at the awesomeness that is my son. 

Of course, I don’t let anyone know that I sink into these thoughts sometimes.  I do everything I possibly can to help him and I do believe he will make a lot of progress.  I push everyone who is working with him to go the extra mile because I want them to know that I believe in him and I want them to believe in him and I want him to believe in himself.  But somewhere in the dark corners of my mind where no-one else can see, in order to protect my own heart, I’ve been hedging my bet.  I’ve been quietly/privately getting myself ready to accept that he will go through his entire schooling in a self-contained special-ed class.  I’ve been steeling myself in case he never gets to a point where he can live on his own or support himself.  I’ve been quietly having different expectations than I did 2 years ago, 1 year ago.  Back then I still assumed he would eventually catch up.   CC is still in that place. 

Don’t get me wrong, Jay has made a lot of strides but they’re fewer and slower in coming than I had let myself dream about.  But when they do come all my doubts fly out the window and I am re-fueled by him and filled again with a surety that he will find a way to make it through our world in a way that works for him.  I am reminded that what this is all about is helping him to find his way. 


Our family recently went to see Thomas Live on Broadway.  I almost didn’t get Jay a ticket because I wasn’t sure he’d be able to handle sitting in the dark theatre for 1 1/2 hrs and not disturb the other people in the audience.  But I did get him a ticket and he did sit and he did watch the show wide-eyed and awe-struck and he laughed and clapped and had an amazing time.   I kept looking over at him and each time my heart skipped a happy little beat.  He blew my negative expectations out the water.  Silly Mummy. 


We took a trip to the zoo last weekend.  I thought for sure Ace would love it and Jay would be there just going with the flow but not really being too interested in what was happening.  I thought he’d play with his trains and it wouldn’t matter to him if we were at the zoo or in a space ship or sitting on his bedroom floor.  Again my boy surprised the heck out of me.  While Ace wanted nothing to do with the animals and only wanted to be at places like the merry-go-round and the spider web climbing ropes and the slide that made its way through a hollowed out tree … Jay could’ve watched the animals all day.  He was so taken with all of them.  He ooh’d and aah’d and pointed and actually tried to make animal sounds.  (We’ve been working on animal sounds for a while but it never really clicked)  He literally tried to climb into a couple of the displays.


I think back to the days when we worked so hard on getting him to point at things.  That seems like a lifetime ago but in fact it was only a couple of months ago.  Oh how he’s changed in a couple of months.  No-one on the outside would know how much effort went into getting him to use that 1 little finger.   No-one would know how many times we had to use hand over hand direction to mold it.  Or how many times we held up 2 choices of snacks to help him practice.  And now there it is.  It looks so easy.  But I don’t take 1 thing he does for granted.  Every time I see him point I’m blown away and it puts a big grin on my face. 


I really think somewhere in Jay’s head, the wires are starting to connect about forming words.  He’s very clearly saying Mummy and Daddy now.  How happy am I?????  Too much to put down in words so I won’t even try.  Actually I did try but that post never made its way here.  It wasn’t good or eloquent enough.  I couldn’t find the words to express those emotions.  Honestly, I just couldn’t wrap my head around it intellectually because when I hear him say “Mummy”, all the emotion goes straight to my heart. 


Yesterday at the park, we were in a fenced in play area and he pointed at a squirrel on the other side of the fence and said “out” because he wanted to go take a closer look at the squirrel.  When the squirrel ran up the tree he pointed up the tree and said “up”.  Yes, he really did want to follow the squirrel up the tree.  lol.  He then went up to a man with a dog and with permission proceeded to pet the dog and play with him and it sounded like he was trying to say “dog”.  Simply amazing. 


Another thing we’ve been trying so hard to teach him is body parts.  I’ve been working on nose, eyes and mouth but so far no luck.  Guess what though?  He has learned one.  Thanks to CC.  He now points to his private area during diaper changes and says “pee pee”.  How typically male to be interested in your pee pee.  lol.  I mean really … how many people can say pee pee is the 1st body part that they learned? 


The point to all this is that my angel is learning.  He is developing.  Sometimes it’s easy to forget how far you’ve come (like with the pointing) if all you focus on is how far you still have to go.   So from now on, whenever they start creeping up on me, I’m going to try to put my fears aside and embrace all that my son can do and will do in the future.  I will remember how much he has learned so far and I will embrace all that he has taught me.  I will bask in the fact that because of him and the battles that we’ve fought I am a better person.  I’m stronger.  I’m more patient.  I’m a more appreciative and less judgmental person.  But it doesn’t stop there.  Oh no.  Because Jay has brought those wonderful traits to my life I have spread them to other people and now I have family, friends and co-workers who are less judgmental and more understanding people also.  Jay has accomplished so much already in his 3 short years and brought so many positive things to our lives.  I really firmly believe the sky is the limit for him.  He’ll get there … with our help … when he’s ready.


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