Life On The B Side

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

What’s Wrong With Him? October 12, 2016

 

Ignoring the stares and comments from strangers used to be a daily occurrence.  People had a lot to say about the behaviours they saw from Jay in the early years.  At first it was really hard.  Every look put me on edge and every judgmental word made me cry – Then my skin got thicker.  I became a master at focusing on him and what I needed to do to help him, instead of them.

Without me noticing it, the need for the thick skin slowly faded.  His tantrums have all but disappeared.  He has become more and more able to regulate himself and function in a mainstream setting.

I got comfortable.

Nowadays we sit back gleefully and soak up all the positive reports we get from school.  We grin and get all the good feelies when people who know us see how well he’s adjusting and working his way through life.

We brag about his sense of self and his unwavering support for his brother.  If Jay has your back, he really has your back.  Trust me, you want him in your corner.

Plus, he’s just so darn cute.

 

When he goes to martial arts class – we see him through parental eyes.  A year ago he would have been unable to handle that type of setting.  The bright lights and loud noises.  The physical touching and demands to perform, to wait your turn, to be crisp and sharp and to remember routines.

When he’s in class we see him thriving.  We see him learning the moves.  We see him getting stronger.  We see him trying really hard.  We see him HAPPY and proud of himself.  We share the videos with family and friends.  They all cheer for him and share our excitement.

When he’s in his martial arts class the joy bounces off him.  He loves it there and it’s magical.

It’s obvious that this child is a super star and that he deserves to be praised and celebrated.

 

 

Then one day you are reminded that everyone is not in your bubble.  You make the mistake of forgetting that not everyone sees him through the same lens that you do.

They don’t see the amazing, over-comer that you see.  They see just another kid.  They see him running too fast or his arms moving too erratically or his coordination not being quite as good as the other children.  They see him smiling too widely and laughing too loudly and being a little too silly.  They wonder out loud,WHAT’S WRONG WITH THAT KID?”

They don’t know they are witnessing a miracle.

 

I’d love to shrug it off and say it sucks for them.  That it’s their loss and their life would be richer if they could really see him.  Really see him.  But the truth is that no matter how much you try to convince yourself of that, it hurts.  You wonder if you should say something to defend your kid.  Shout at them.  Calmly educate them.  Or should you just ignore it.

How dare they dampen your joy.  How dare they put a nick in the awesomeness that it is to see your child shine.  How dare they assume to know anything about where we have been and how far we have come and what our story is.  How dare they wonder about what it took for us to get to this point.

No, hearing those questions doesn’t erase all the work or minimize the achievements, but it does make you stagger.  It feels like a kick in the gut.

 

In the end, you sit there, swallowing bitterness and fighting the urge to lash out.  You let your kid finish his lesson.  You give him a huge hug when he runs over to you at the end of it; delighted with his performance.  You hold his hand tight, and your head high, as you walk past the same people who were wondering what was wrong with him.

 

 

Calming December 26, 2013

Filed under: Autism,Family,Special Needs Kids — The B Side @ 4:58 pm
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Picture 090 Picture 059

(It’s been just about 2 years but I’m still not even close to being over the fact that Jay will pose for pictures)

 

 

I don’t want this post to get misinterpreted that there was mostly overwhelmed feelings and frustrations.  Not at all.  There’s a lot I could say about the birthday parties that the kids and I went to last weekend.  There’s also a lot I could say about Christmas.  Lots of good good fun happy stuff.  Not the least of which is that my sister witnessed Jay taking a bite of a slice of pizza and said to me “Is that the first time?” and when I said yes, she followed up with “Don’t cry.”  🙂

 

The big picture this week, where the boys are concerned, is one of a good winter break.  But today, I do want to zoom my lens on the effort that Jay has been putting out lately to calm himself when he gets overwhelmed or frustrated.  He’s also really been trying to verbalize his feelings more.  I think mastering those things will have the biggest impact on his day-to-day life and ability to function.

 

Take for example …

We were at Chuck E Cheese.  Jay made his way over to the ride that he likes the most.  Someone was on it and there was one person waiting.  Now, this could easily have gotten ugly.  When the kid that was on the ride came off, Jay started to move forward.  I held him back and told him that the other girl was there first so it was her turn and then it would be his turn.  He calmly waited until she was finished and then got on.  Once he was on, the ride didn’t even work properly but he held it together beautifully and moved on to something else; like that’s something he’s always been able to do.  It has not.  But I noticed the improvement and was very proud of him.

 

Another example …

We were at a lavish 8th birthday party for a girl in Ace’s class.  We had been there for about 3 hours when Jay started to get hungry.  Bad mummy that I am, I had totally forgotten to bring him anything to eat.  While all the other kids were eating hot dogs and fried chicken, Jay began to come undone.  He was hungry and he let me know that he was ready to go.  The dilemma was that Ace was having fun and I hate when he gets short-changed because of Jay and especially because of poor planning on my part.  The kind mom of one of the other boys offered to keep an eye on Ace for me while I went out with Jay to get him something he would eat and then we could come back.  I suggested to Jay that we go.  He wanted no part of that.  I told him that Ace was still playing but we could go get cereal bars and come back.  He very nicely used his words to tell me (and all the other guests) that he was not leaving without Ace. Then he pulled 2 chairs together and lay down across them and pouted.  It was the most beautiful and loving thing in a sense but it made me sad because I know he was uncomfortable.  Too much going on.  Lots of kids and the loud music and the games and the dancing.  The battery on his tablet had died and he was famished.  Oh how he tried.  He even joined in with the other boys for a game of tag and then sat back down and asked me if it was time to go.  At that point he had pushed himself about one hour longer than he wanted to and I knew he really couldn’t take anymore.  I asked Ace if he would mind us leaving and he said it would be fine as long as he got a cupcake and his goody bag first.  The birthday girls mom obliged and we headed out.  Disaster averted and both boys satisfied.

 

Finally …

It’s Christmas day.  We spend the morning at home opening gifts from Santa, family and friends.  Happy happy joy joy.  Around noon we pile into the car to go to my cousins house.  I know it will be fairly loud and there will be a lot going on and Jay will likely get upset about something at some point, but we’ve been there numerous times before and I wasn’t worried.   As it turns out, the thing that caused the frustration was a Polar Express train that my cousins had around the base of their Christmas tree.  Jay-boogie wanted it to run but it kept coming off the tracks.  He got loud.  My cuz tried to fix the train but he would’ve had to stay there all evening constantly readjusting it so I told him not to worry about it.  Jay tantrummed a little bit as the other very well-behaved kids looked on.  I tried not to look at them.  It’s easier for me that way.  Then Jay told me to “sit there” and pointed to a nearby chair.  Note:  I didn’t say he asked me to sit.  He TOLD me, and he wasn’t quiet about it.  That may sound rude to someone who doesn’t get us, but whatever.  I sat down and Jay climbed into my lap, leaned into me and pulled my arm around him positioning it just how he wanted it.  Then he said “I so sorry.  I sad.”  I hugged him and told him that I was sorry the train wasn’t working and that he was sad and I asked him if he’d like some juice or a candy cane or a nap or to go outside.  But all he wanted was to be held … so I held him.  After just a couple of minutes sitting like that, he was better and the rest of the evening went pretty smoothly.

 

These things do not come easily to my baby.  He tries so damn hard and I am amazed at his growth.  Really and truly amazed.  We have come such a long way this year.

As I read about other children who are younger than my own and are in a place where we were a year or two ago, I want their parents to know that it can and probably will get better.  And to the parents who have children older than mine, I want to say thank you for sharing your stories.  They do help to keep my hopes high and that’s a gift.

I’m a day late, but I hope everyone had a very happy Christmas!!!