Life On The B Side

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

Jay Jay (Which is a title influenced by the Tom Tom GPS system. Hey, it is Throw Back Thursday) January 19, 2017

So, this is where I force myself to write about something palatable.  Otherwise known as, anything that doesn’t rhyme with Detsy TeDos.  (I am willing to have off the air conversations around that topic.)

 

Writing in general helps to calm my nerves and clear my mind so that’s what I am going to do today in the hopes that it will help.

Since I was kind of desperate for a topic, I initially set out yesterday to write about how I have made the decision to cut out french fries from my diet.  I love french fries.  Nothing goes better with a chicken sandwich or Chick-Fil-A nuggets than fries.  AmIright???  But deep fried carbs are not a particularly good idea for my hips.  I was even going to throw in that I have been forgoing the elevator at my job and climbing the three flights of stairs.  Baby steps people.  Baby steps.  I am no health nut or exercise enthusiast.

 

But then … Something happened this morning that I want to write about it.

Here’s what happened.

Usually Shaunie drops Jay off at his before school program.  I drop Ace.  (Well, I don’t drop him.  I drop him off at school)

Today, however, she didn’t have to go to work so I was responsible for dropping both kids.

As I was pulling around to where he usually gets delivered, Jay started telling me that I was not to go that way.

I ignored him and kept driving.

It was early and dark still and there were no other cars on that particular road and no real reason for me to follow the route that cars typically follow when there’s a trail of cars doing drop offs.  I MAY have gone “in” an “out” parking lot entrance because it’s easier.  Maybe.

So anyway, I assumed that’s what Jay was protesting.

He wouldn’t let it go.

No Mom. Don’t go that way. That is not the way. Go where the buses go. That is not right. You have to go the other way.  Nobody goes that way. You need to go another way.”

I parked, told him to get out the car – He was still protesting – And we walked to the door where …….. There was a big sign pinned up telling us that they had temporarily relocated to  a different area.  

We got back in the car and Jay basically said “I told you so.”

Then before I could say anything to defend my self – I’m not sure what I would have said but I don’t like to be wrong – He said “I will be your GPS.”

My son, who I didn’t even KNOW had not only *grown but was now *proficient in telling left from right proceeded to guide me to the correct location.

Turn right here.  Not this one.  Right.  Right.  Left.  Now stop.  This is where you take me.”

 

I was able to safely deliver my boy to his care takers and go on about my business and start my day feeling good about all the things that he learns that have nothing to do with me.  I drove off feeling incredibly grateful to all the teachers and therapists and aides who educate him in ways that I often am not acutely aware of.  I felt so happy that he is able to attend a wonderful local public school that is properly funded and whose Special Education dept is fully supported, where the laws around IDEA and FAPE are understood/enforced and whose teachers and principal think in creative ways and use innovative tools to cater their lessons to each students learning style because they truly want to see ALL OUR KIDS succeed.

 

 

If you understood what I did there then {high five}.

 

 

 

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.

 

 

Science And Music? What? September 21, 2016

Sitting around the corner and listening to Jay study science with *Shaunie.
He’s learning it folks. About condensing, melting, freezing, the physical properties of matter, atoms, molecules etc.
He’s learning science!!!! At grade level. It’s not easy for him but he’s trying so hard.
He may not get an A on his test but he’s really learning and I couldn’t be more proud.
I made the mistake of thinking back on when I never in my wildest dreams could have ever imagined this. I couldn’t have imagined anything even close to this.
I don’t have the words to explain this feeling.
Too emotional.

 

 

That was my Facebook status the other day.  Our beloved Nanas commented that she always knew he’d get here.  I can’t say the same thing.  I always had high hopes for him.  Of course.  But I’d be lying if I said I always knew my son would be in a general education classroom studying the physical attributes of different kinds of matter.  I dared not assume that he’d ever be able to answer the question “What is an atom?”  Yet, that’s exactly what was happening.  

I had to dry my tears when I heard Jay get up and I realized he was making his way to where I was perched on the stairs.  

Later in the evening, I lay on the couch with him for a few minutes.

I wished him luck on his upcoming test and asked him if he liked science.  He said yes.  I asked him about math and reading.  He said they were OK but math is hard.  He said he prefers science to both math and reading.  I asked him what he thinks about his art class.  I wasn’t surprised to hear that he LOVES art.  

Lastly I asked him about music class to which he said “It’s loud in there and makes my ears hurt.”  

Jay doesn’t have a lot of sensory issues.  If he did have one though it would be related to sounds.  He’s not a fan of out-of-tune singing for example.  I asked him if he’d like me to talk to his teacher about music class.  I told him it was possible for him to do something else instead.  I thought for sure he’d take me up on that offer but instead he mulled it over for a minute and then said “No.  I will stay.  I think I can handle it.”  

These types of back and forth conversations will never NOT be a miracle to me.  

I am blown away by this child.  

 

September 4 years ago, I published posts where the big news was that Jay sat and listened to his first story.  I published posts where Jay was getting kicked out of 2 different social skills classes.  He wasn’t yet reading.  Heck, he wasn’t yet speaking in sentences.  Not even 2 or 3 word ones.  He definitely wasn’t able to take any kind of standardized test at school.  He was in an autism class where they were just trying to get through the day without anyone getting yogurt dumped on their head.  

Before bed last night, I hugged him tight and told him how amazing I think he is and how brave I think he is.  He shrugged me off.  He doesn’t get it.  To him, I’m just a Mom being mushy and weird.  That’s alright.  He doesn’t have to get it.  

 

To all the families who are currently where we were 4 years ago … I know it’s rough.  I know everything seems impossible or implausible.  I know all you want is for your child to say your name.  You don’t even know what your baby’s voice sounds like.  How can you think about science or music class?  Your brain is full – And tired.  I know you want one night of uninterrupted sleep.  You’d do anything to be done with diapers – After all your baby is now 5 or 6 or 10.  If you could just get them to eat 1 new thing you’d be happy.  You’re not asking for much.  It doesn’t have to be cauliflower.  You just cannot make ONE MORE grilled cheese sandwich.  But you will.  Cause that’s all your kid eats.  You don’t want to hear other people telling you to stay hopeful.  You sure don’t want to hear about how their child is also a picky eater.  You don’t want to hear about the things you should be doing or what worked for their neighbours kid.  You don’t feel like you are doing anything right.  You don’t want to fight with schools or insurance companies anymore.  You just want things to be easier.

My God, I get it.  

But hang in there.  It may not happen at the same rate as my son or anyone elses son.  That doesn’t matter.  All that matters is that you don’t give up.  Keep looking.  Keep trying.  Keep working.  Keep talking.  There’s no magic pill or therapy or device.  It’s HARD.  It’s ok to cry.  But just keep keeping on.  

ASSUME THAT YOUR CHILD CAN LEARN.  ASSUME THAT THEY ARE HEARING EVERYTHING YOU SAY AND ARE AWARE OF EVERYTHING YOU DO.  ASSUME THAT THEY ARE BRIGHT AND CAPABLE.  

 

The reward just might be your kid acting like it’s no big deal that they know what the volume of a mass is because in their own matter of fact way they will say “Yeah, I’m smart“.   

 

Reading, Glorious Reading April 2, 2014

Here’s the thing about Jay. Well, not THE thing. One thing.
He is stubborn and he thinks he knows a lot more than he actually does and he will not back down and once he has his mind made up, the chances of you changing it or convincing him that he is wrong are slim to not a chance in hell.
It’s a good thing and a bad thing depending on how you view it. Sometimes I put my foot down and try to show him (teach him) where he’s wrong about something, but sometimes it’s easier to just agree with him and say yes Jay, that factory tower in the distance spewing pollution into our air IS a rocket.

 

Last night, after Ace and I had just finished reading a story, Jay came with his own book that he wanted us to read together. It was a giant 130 page book of animals and animal facts. *Yawn* I mean, obviously I was happy to read with my boy, so yay for that, but I’m just not really a “read about animals” kinda girl. Know what I mean? Oh well, we snuggled in and began reading The Complete Guide To Animals. It’s a book that he chose himself at a book fair.

animals book

 

We started by looking at the pictures and talking about what the animals were doing in each picture. Then we would read a line or two of official facts and then we’d move on to the next page.
At page 74, Jay saw what he thought was a bird. I told him that it was in fact a penguin. He was adamant. “No mom. Is bird. Look, da hair.” I pointed to the words in the book; These brown, fluffy, penguin chicks, look very much like their parents, and read them to him. He then re-read them himself and was able to come to the realization that these hairy, bird looking creatures were actually penguins. He loudly said “Oh, you wight. Is penguins.” He was so excited to have learned something new.  Then we moved on to the next page.

king-penguin-chick

 

This happened a couple more times and I was thrilled with the entire experience. It was all great. So great that I didn’t mind going through all 130 pages and putting him to bed 10 minutes late. I even learned a thing or two about Mandrills and Tasmanian Devils.  I had no idea that Tasmanian Devils were marsupials.  I guess animals aren’t sooo bad. Well, except eels. Those things are just plain ugly and they make my skin crawl.

eel

 

Teachable February 25, 2013

Filed under: Uncategorized — The B Side @ 11:07 am
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That word stuck with me.  Teachable.  It was used as an adjective to describe Jay.  I can’t remember if it was said by Jay’s amazing teacher of the past 3 years or if it was one of his therapists in school.  Time kind of blends together for me but I know it was said about 2 years ago in one of his IEP meetings.  I also know that when it was said I made a face that said very loudly “I don’t know where you’re getting your information from but that’s not at all a word I would use to describe Jay“.  Upon seeing my expression, 2 or 3 other people immediately concurred that yes, he was very teachable.  They all saw something that I had yet to see.  At the time, I was seeing how hard everything was and how much he didn’t know that he should know.  I was seeing all the things we said to him that he didn’t understand.  I was seeing that he couldn’t write anything.  Him ever being able to read seemed as likely as me climbing Mt Everest.  He didn’t even know his alphabet.  He wasn’t counting.  He didn’t know his colours or shapes.  He was still in diapers and wasn’t following any verbal instructions.   The not knowing was one thing but what was worse is that he didn’t seem (to me) to even care about learning anything at all.  He was happy to just play with his toys and sit back while we did everything for him.  He didn’t want to do any work at all.

 

Yet, here were people who spend 6 hours a day with him telling me that he can learn and does learn and will learn and wants to learn.  They told me that he is eager to please and that he has a desire to do well.

Again I made a face of disbelief and again there was a chorus from everyone in the room telling me that it was real and that in time I would see.

Fast forward 2 years and they were right ya’ll.  I see it.

My son is very teachable.  Granted, he has to be taught E.V.E.R.Y.T.H.I.N.G. but that’s alright.  It’s easy to put in the work when you see such fast results.  He can be taught.  On top of that, once he’s learned something he becomes Mr. Independent with it and will no longer accept help.  He WANTS to do things; he just needs to be shown how.

*****

 

It’s usually CC’s job to make sure the kids lunch is packed in the morning and that their lunch boxes are in their school bags.  One morning we were running late and CC asked the kids to put their own lunch boxes in their own bags.  Ace did his with no problem but Jay stood there lost.  CC asked Ace to show Jay what to do.  The next morning Cc asked them again to put their own lunch boxes in their own bags.  Again Ace did his and then went over and helped Jay with his.  But this time, Jay was more of an active participant than the previous day.  By the third day, Jay was doing it on his own.  That’s all it took.  Him hearing the command 2 times and getting help with it twice.  Neither CC nor Ace has helped him with his lunch box since.

 

In the evening, the kids put away their socks and shoes.  They change out of their school uniforms and they wait for dinner while Ace does his homework.  Ace can change his own clothes but we always helped Jay with his.  He struggled with the fine motor skills needed to undo the buttons on the front of his shirt before trying to pull it over his head and he would get confused with the back vs front of his home clothes.  It just all seemed to take too much coordination.  A while back, instead of just doing it for him, CC sat on the couch while Jay stood, so they were face to face.  He said, “Come, let me show you what to do.”  Then he went through each step slowly making sure that Jay was paying attention.  He helped him to change out of his school clothes and into his pajamas.  The following day, Jay tried to do it all by himself and HE DID.  His pants were twisted at the waist area but everything was on and facing the right direction.

 

It took me a while to get to this point of not under-estimating my sons abilities but I’m glad that the teachers that Jay has in his life don’t make things easy for him.  I’m glad they see his potential (have always seen his potential) and have the patience to push him to learn.  It’s a lesson that I needed to learn.  Even though, it’s quicker and easier for me to do things for him, I’m not doing him any favours in the long run by not showing him how to do things himself.  Taking the delayed language skills out of the equation – He can do just about any age appropriate thing … If he’s taught.

 

 

Curb Appeal February 14, 2013

Filed under: Life on the Jay train — The B Side @ 5:18 pm
Tags: , , ,

It’s become a thing with us.  If we’re doing real grocery shopping, we park in the lot and we all go inside the store.  If we only need one or two things, then CC pulls up to the curb and I run in and grab what we need while my boys wait in the car.  We also do the curb-side wait when we’re picking up (non-drive-thru) restaurant food for dinner.

 

The other day we needed one or two things, so we decided to make a quick stop at the supermarket on the way home in the evening.  Jay immediately recognized that we were not making all the same turns that we usually make and asked, “Where are we going?”  CC’s response was that we’re going to the grocery store.

Jay asked again.  “Where are we going?”  That meant he didn’t understand what CC had told him.  I tried to say it a different way.  “We’re going to the supermarket“.

Still baffled, he asked one more time.  “Where are we going?”

We are going to get cereal bars” I said.  I hoped that would do the trick, because I didn’t know what else to say if that didn’t work.  It did work.  Jay said “OK” and nestled back in his seat.

 

CC and I LOVE moments like that.  We love that he knows his way home.  We love that he can ask us questions.  We love that he didn’t get flustered and kept asking until he got an answer that he understood.  We love that he took the diversion so easily and we made our way to the supermarket with no problems.

 

As CC pulled up to the curb and I prepared to exit a little voice from the back seat chimed in; “Want there.”

I looked behind me and asked Jay if he’d like to go inside.  He gave me a very strong Yes!

I said OK so of course, Ace wanted to go too … So just to get eggs and cereal bars, CC parked properly and all 4 of us went inside.  Jay wasn’t interested in asking us to buy anything, but he did have an agenda.  There were specific things he wanted to look at and label.  Because of him, we went to the produce section and he named the fruits and veggies.  Then we went down the cereal aisle then we made our way to the cold foods section.  Jay was determined to see the cow on a particular cheese package.  I indulge him these things.  It’s not like we were in a rush and if it makes him happy to see a cow or to name fruits and veggies, I’m cool with that.

 

A couple days later, we needed 1 thing, again.  This time I think it was milk.  CC pulled up to the curb.  I gave him a look and whispered, “Do you really think Jay isn’t going to want to go inside?”  Sure enough, there was rustling in the back seat and a seat belt got unbuckled, toys got put down and a little boy stood up ready for his supermarket adventure.  In we all went.  We named fruits and veggies.  We looked at the DVD display.  We visited our cow friend on the cheese package and we got milk.

 

Last night was a late one for us. Wednesdays are therapy nights so we decided to go to a favourite Jamaican food spot for take out.  We parked by the curb, CC got out and I stayed put.  You guessed it … the children wanted to tag along to do the pick up.  Ace asked first … “Daddy, can I go with you?”.  Then Jay repeated the same line.  It was great.  Jay has been doing so much echoing lately but it’s really helping him to develop him speech because after hearing something once or twice he will start to use those lines on his own and in the correct context.

I was quite happy to sit in the car by myself while the 3 gentlemen in my life went inside.

(How sad is it that I counted those 5 minutes as “me time”?)

 

Needless to say … I think we’ve seen the last of the curb-side park and wait.