Life On The B Side

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

Life On The B Side July 10, 2017

For a while now, I’ve been wanting to change the name of my blog.  (I don’t think I can change the actual website link name … Well, I think I can but I have some logistical questions so I’m waiting until I can get my techy friend Robbo to come help a sistah out.)

In the mean time though, I can change the name that appears as my header so that’s what I’ve done.

 

All those years ago when I first began blogging, I was consumed with autism.   I ate, breathed, and dreamed ABA, self-contained, sib shops, sensory integration, adaptive technology, theory of mind, floor time, social stories, insurance coverage, equine therapy, fine motor skills, chelation, gluten free … you name it.  It was ALL I Googled about.  Autism was the ONE subject matter on all the blogs I followed.

Also, all those years ago, my boy was obsessed with trains.  Thomas the Tank Engine to be exact.  We spent hundreds of dollars and hundreds of hours on Thomas.  I hated the expense more than the time.  Some of the songs are actually pretty good and I enjoyed the Hero Movie.  And no matter how mature I am, remembering how it sounded when my toddlers said “Percy” will never not be funny.

 

The name Life On The J Train made perfect sense – At the time.

 

Things have changed.

Now our lives do not revolve around autism anymore.  It’s still obviously a huge part of all our experiences, (will always be), but it’s not all consuming, all the time.

Now I write about many different topics.  Now I follow bloggers who write about many different topics.  Now, Ace is as much a part of my blog as Jay ever was.  Just like we all have, my blog has evolved.

Life has undoubtedly turned out to be vastly different than I thought it would be.  Vastly worse in some ways, yes, but also vastly better and easier in others.

 

I have chosen my new name as way of acknowledging my “Holland”.

(In case you are not familiar with it … “Welcome to Holland” is an essay about having a child with a disability which uses a metaphor of excitement for a vacation to Italy that first becomes disappointment when the plane lands instead in Holland and then contentment at the happy events which they experience instead.)

 

What I once thought would be an outlet for doom and gloom and despair has turned into what I hope my boys will see as a gift.  I hope they see my growth and understand the dark moments.  I hope they enjoy having all this info about their lives at their finger tips.  While other people may not be able to fully see the beauty in our lives, I have come to treasure all our experiences.  Because of everything we’ve been through, I love harder and appreciate on a deeper level.  I am better and stronger and braver.

I have LOVED The Jay Train.  Truly.  Starting this blog is one of my favourite things I have ever done – ever.  But I’m ready to move on to The B Side.

 

If you are like me and were a child in the 80’s (or earlier) then you know all about A sides and B sides on a cassette tape.  For you young’uns … The A-side usually featured the songs that the artist thought were the good ones.  The ones they hoped would receive radio airplay and become hits.  The B-side (or “flip-side”) had the songs that were considered to be more fluff and less substance .  The thing is though, there are many B side songs that out performed expectations and became hits.

 

Unchained Melody, I Will Survive, Save The Last Dance For Me, We Will Rock You  – Yup, all B side songs.  All huge hits that no-one saw coming.

 

This new header takes into consideration the totality that is my life … my writing … my experiences.  The things I never could have predicted.  It is to symbolize that while there probably is some garbage, amazing goodness can come out of what people assume will be something bad or mediocre.

 

Now tease your hair, think about your favourite Molly Ringwald movie and grab a pencil cause it’s highly likely that I’ll unravel at times.

 

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About Me – And Us July 6, 2017

Just as with my last post, I was motivated to write this post because of something I saw online.  It was this past Fathers Day and one of my Aunts posted a message talking about her dad – My grandfather.  It was then that I realized that before she did that, I had never even known his first name.  It was a strange realization.

It led me down the road of thinking about other things that I do not know.  There is so much.

It also led me to think about the times I’ve spent just chatting with my Aunty J in Jamaica.  A couple of months ago while we were there I learned for the first time why her brother moved away (got sent away) to Canada to finish high school and she told me what it was like for her when she left Jamaica – alone as a teenager – to attend college in England.  She talked about the boat ride and getting lost and having to borrow money and living off 300 pounds for an entire year.

I loved hearing her stories.

 

All this got me thinking that I want my boys to know things about me – And about themselves.  Random things.  Things that they may not ever think to ask about or that may never come up in conversation.

 

Things like the fact that Ace got his name a long time before he was born.  There was a boy in my high school who went by a different name altogether and then one day I learned what his real name was and I fell in love with it.  This boy wasn’t my friend in any real sense of the word.  We had no relationship at all really.  I just loved his name and made a decision there and then (when I was 14 years old) that I’d name my son that one day.

Ace was born at 8:05 am by C-Section.  My official due date was September 27th but I was scheduled to have a c section on the 13th since he was breach.  However, my water broke at about 2 am on the 3rd so that was it.  The whole thing was calm and fairly easy.  I never felt one contraction.

This may be a weird thing to say but the first thought I had after they took him out was … “What’s the date???  Please don’t let me forget the date.  It will be so bad if I can’t remember my babies birthday.  I am sure I am going to forget the date.  Deen, remember todays date.”  Lol.  Maybe that was because of the drugs I was given and maybe it was because I had been so focused on the 13th up to that point and maybe it was just my hormones going crazy.

 

 

Jay got his name because his dad liked it.  I was campaigning for Gavin or Tristan.  I did get to choose his middle name though (which is neither Gavin nor Tristan).

Jay actually has a cousin with the same name who is 3 months older than he is.  They claim to have chosen the name first but they didn’t.  They stole our name.  I don’t say that with animosity.  Just stating facts.  🙂  This is why I advocate for keeping your name choice quiet until delivery day.

He was born at 2:20 on a Tuesday afternoon after about 16 hours of labour and 15 minutes of pushing.  We had left one year old Ace with Nanas while we went to the hospital and he stayed there until Jay and I were discharged.  I don’t know what we would have done without her.  When I tell you she’s been there with us through it all, I mean it.

Jay also came 3 weeks early.  Seeing as he is a January baby, I of course worried about the weather.  I did NOT want to make the news because I birthed a baby in the Holland Tunnel due to being stuck in snow storm traffic.

Jay had the most unruly hair I’d ever seen on a baby and while we were in the hospital he was most comfortable sleeping on me.  He was not a fan of the basinet.

 

That’s all I’ve got for today.  I will try to make this a recurring theme.  Hopefully – Maybe – One day the boys will read this and find it at least a little bit interesting.

 

Mind Reading July 5, 2017

I saw a thing online – It asked the question:

 

Whose mind would you like to be able to read?

Your partner, your child or your parent.

 

Right away, Shaunie said she’d want to know what happens in my head.

I’m glad she can’t – lol

 

I didn’t immediately know my answer.

I very quickly ruled out parent.  That left partner and child.  Who hasn’t at some point wondered WTF their partner was thinking?  But my first thought was “Definitely my child; specifically Jay.”

I mean, that was my wish for such a long time.  I dreamed about it and wrote about it and cried about it.  I wanted to know my baby.  I wanted to know what he liked and how he felt and what scared him.

 

When Jay was 4 years old I took my boys to the park.  It had a little fenced-in playground.  Other parents found spots on benches and sat while their kids ran around laughing and sliding and playing tag.  I walked around – this way and that – Always making sure that I could see my boys and that they could see me.  We weren’t at the point yet where I was comfortable not having them in my eye sight.  They were too fragile.  Ace with his over the top energy and Jay with his poor communication and frequent tantrums.

As I was leaning against the fence, Jay ran over to where I was standing and started staring up into a tree just on the other side.  Of course my eyes followed his gaze where I noticed the squirrel that had captured his attention.  He stood there for a while.  Then he said “out.”  It happened so quickly and so out of the blue that I wasn’t sure I had heard it correctly.  He had never said out before.  Up to that point, his entire vocabulary consisted of 2 words.  Had he even said it at all or was it in my head?  I looked around to see if anyone else had heard him because if they had, surely they would have made a big deal out of it.  Nothing.  Kids were still running and laughing and climbing.  Parents were still sitting.

I panicked because he had said something.  It was one word.  But it was something and I needed him to know that I had heard him and understood him.

But Ace was still playing.  I wanted to take Jay “out” and bring him closer to the tree and his squirrel but I couldn’t leave Ace there.  By the time I grabbed Ace would the squirrel have moved on?  Would my moment have passed?

That was our life.  Always on edge, grasping at every straw and gently holding onto every  precious morsel – lest we lose it.  We could afford to lose or waste nothing.

 

 

 

Last weekend, I sent the boys to bring our garbage can around to the front of the house in preparation for Monday mornings pick up.  It’s their standard Sunday chore.  Every Sunday I have to remind them to do it.  Every Sunday they complain about doing it.

But, I have something to say” Jay quipped.

Go get the trash can first and then you can say whatever you want” I told him.

Off they went and I was there with a ready ear upon their return.

 

It didn’t hit me until Shaunie and I were talking about the online question that I had been so cavalier about Jays desire to speak to me.  My son, who I spent so much time waiting and wanting to hear any word from.  5 years ago; 3 years ago I would have told you that you were crazy if you told me this would happen.  If you had said that I wouldn’t stop the world from spinning every time Jay wanted to share his thoughts.

 

Go get the trash can first and then you can say whatever you want.

WHAT???

 

 

When our neighbour offered to take my boys to the park with her son, Jay declined saying he’d prefer to stay inside as he’d had enough time outside and was hot.  Later when he was invited to their house for dinner, he accepted.  He did, however, ask if he could bring his own snack – weary as he was that they would be serving something he didn’t like.

He’s made it clear that he wants to go to a big water park this summer and he does not see the value in learning how to ride a 2 wheeler.  He let me know that he was proud of himself for trying pink lemonade at camp and complained to his father that I take too many pictures.  He says he wants to be a policeman when he grows up and he explained to a friend that even though school is out, he still needs his rest so he doesn’t mind having the same “early” bed time.

If he’s not happy with us, he shares why.  If his feelings are hurt, he is open about it.  If he’d prefer (frozen) at home pizza over our usual Friday trip to Costco complete with Costco pizza then he lets us know.  If he’s excited or bored or nervous or thinks something is funny, we know all the details.

At bed time if he wants me to stay with him for a while and cuddle he will ask.  Conversely, if he wants alone time, he will politely say “Do you want to go now?  You can if you want.  I won’t mind.”

At the local pool, he encouraged a friend who was nervous about going on the big slide.  He has already let us know what kind of cake he wants for his next birthday (in January).  If he’s mad about ripping a page in his book or about being told he has to do a chore before he gets a snack, he will be very vocal about his displeasure.  If he thinks he’s not being treated fairly he will be the first one to speak up.

If Ace is talking and Jay interrupts, I let him know that he has to be respectful and wait his turn.  His talking, while still cherished, does not take precedence over all things.  Not anymore.

 

This is our life now.  It happened ever so slowly – Yet, I have become so accustomed to it that it would be easy to overlook.

The bottom line is this … If he likes something he will say and if he doesn’t, he will also say.  Of all the people in my house, Jay is now the one who is the most open and who is the least likely to be holding back or hiding his true thoughts.

 

He still has many challenges.  He’s still socially out of tune sometimes and reacts to things in ways atypical to other children his age.  He is still vulnerable to bullying and/or abuse, but gone is the crippling fear I used to live with that he will be bullied and/or abused and not be able to let me know.

 

So even though I’d love to understand HOW their brains work, I am inclined to agree with Shaunie that the kids deserve the privacy of their own thoughts.  And even though I’m not sure if it would make things better or worse between us, I guess I’d choose to read my partners mind.  I’m sure there are some real gems rolling around in her thought bucket.

 

 

By the way though, as their mother, I reserve the right to change my mind about all of this when they are teenagers.

 

Sleep Over Balancing Act June 19, 2017

When we moved to Virginia, towards the end of a school year, Jay ended up at a different school than Ace.  Basically, Ace  got enrolled at the local public school for our zone and Jay was enrolled in the zone next door.  Jay needed a specialized program and there were no available spaces at Ace’s school.  The thought was that we’d have him finish out the year “next door” and then in September we’d transfer him to his rightful place at our district school.

Here’s the thing though – We fell in love with his school.  Well, the staff really.

They were amazing and he instantly found a home there.  When September came, we decided to leave him where he was.  It has not been inconvenient at all and there have been no issues with this arrangement.

Until.

The weather started to change in the spring and the neighbourhood kids began playing outside.  All the kids in our neighbourhood go to Ace’s school.  I  didn’t think this was a problem though because they always welcomed Jay to play outside with them even though they didn’t know him from school.  Kids are pretty cool that way.

 

Jay noticed however, and asked me one evening why it was that he never saw any of his friends playing outside.

It broke my heart.  All I could think was that here was one more way in which my boy was losing out due to no fault of his own.  One more way his different neurology was singling him out and making him feel “other”.  I hated it for him.

 

It got worse.

One day the kids were all out playing and ventured a little further than they typically do.  (Still safely within the confines of our complex).  Ace found out that yet another friend of his lives by us.  He was closer to this friend than any of the others.  The next thing I knew, this boy, oh heck, let’s call him, Zach, was at our house a few nights later for a sleep over.

There was much excitement about this sleepover.  It was the first one Ace had had with a school friend.  They had all kinds of plans to play video games and eat too much junk food and stay up all night.  (The junk food and the all-nighter didn’t happen by the way).

Even though we have a spare room and offered to let Zach sleep there, he made himself comfortable on the floor of Ace’s room with blankets and sleeping bags and the like.   There was much talking and laughing coming from that room.

 

 

Here’s the thing – Jay wanted very much to be a part of the sleep over fun.  Ace wanted very much to have his friend to himself.

I understood both desires.

I could’ve compromised.

I could have made Zach sleep in the guest room when it was bed time.  I could have forced the 3 boys to share the same space – either in Ace’s room or set them all up on the living room floor.

 

This time though, I had to rule in Ace’s favour.  He is expected to share a lot with Jay.  He gets lectured a lot on taking good care of his brother, especially when they are out together.  He’s told to be on the look out for bullies targeting Jay and to help him when he’s struggling to communicate.  He is reminded of Jays developmental delays and expected to understand and accept and include and coach and teach.

But I have to allow him to have something to himself too.  He has to know that he’s allowed to have relationships outside of his brother and that it’s not selfish to take care of yourself sometimes.

 

It was really hard tucking Jay in that night.  He was so sad.  He wanted to know why he wasn’t having a sleep over and why his friends never came over.  He wanted to know why Ace and Zach were leaving him out.  I tried my best to comfort him.  I even offered to lay down with him until he fell asleep.  I NEVER do that.  He turned me down.

He has brought it up no less than 10 times in the last couple of weeks.  “When will I get a sleepover?”

I don’t have an answer.

 

As hard as it is to hear those questions and to see Jay hurting, I know it was the right thing to do for Ace.

I’m not gonna lie though, I’m kind of glad that Zach spends his summers in North Carolina.  That buys me some time as I don’t expect to have to deal with anymore sleepover requests for a while.

 

For You We Always Will June 13, 2017

Well, it happened.  The boy graduated from elementary school.  What a journey it’s been.

I told a friend on the phone … “I made it through without crying.”

His response was the equivalent of … “It’s not really that big of a deal in the grand scheme of life.  There are bigger things ahead that really deserve to be celebrated and that will probably make you get emotional.”

 

No“, I said, “You don’t understand.  For some peoples kids getting through elementary school is easy.  For mine it was not.  I am just so proud of how he has performed over the last 2 years.  The first 3 were rough.”

 

I remember the days when every single report card came home with a note saying we needed to have a parent teacher meeting.  Shoot, in some cases, I had to meet with the Vice Principal.  I remember when having his own personal chaperone on a field trip was mandatory.  There were times when I couldn’t make it and our Nanas stepped in.  I remember in second grade when they threatened to hold him back and have him repeat due to near failing grades.  I remember, with much appreciation, all the things his teachers did to help him even though there was no legal reason for them to do so.  Bringing in their own personal i-pads to school to use as an incentive for good behaviour.  Allowing him to play with Legos in a quiet office when his body was too agitated to sit through reading time.  Buying books with their own money that they thought he’d like to encourage reading.  I haven’t forgotten the concern over his fine motor skills.  (His writing was all but illegible).  I remember the phone calls I received telling me about the latest injury he received because he fell over in his chair.  I can recall his teachers treading lightly as they attempted to suggest we take him for an evaluation with a specialist.  They didn’t want to offend.  But they saw him struggling.  I remember him starting to hate school and being scared to begin a new year in a new grade with a new teacher.  I remember  his school choosing to put him with a specific teacher in 3rd grade because they thought she would have the skills to reach him and help him.  They were right.  She was a great fit for him and he loved her and learned to love learning.  School, was still not easy, but it stopped being such a scary place.

Fourth grade and fifth grade were vastly different.  There were no more “needs improvement” check marks on the behaviour section of his report.  There was marked improvement in his organization skills.  He began getting A’s and B’s.  He joined, and enjoyed being a part of, multiple after school activities.

 

So you see, while to many an elementary school graduation may not be a big deal, for us it is worth celebrating.  First we struggled and then we conquered.

 

It was a team effort and his support team is stronger than ever.  I will say the one part of the ceremony that almost got to me was at the very beginning when the Vice Principal asked the graduates to turn around and look at the crowd behind them.

That’s your support system.  Those are the people who helped you and will continue to help you.  Lean on them.  They love you.”

And there we were, sitting proudly in the auditorium.  Myself, Jay, Shaunie and CC.  All together for our boy.  When it was his turn to collect his certificate, Jay stood up and shouted “Ace is next” and then he clapped bigger than anyone else.  Shaunie and CC were on photo duty.  I sat up straight, soaking in the moment and beamed.

 

It happened.  The boy graduated from elementary school.  What a journey it’s been.

 

 

 

~*~

When you’re feeling lost in the night,
When you feel your world just ain’t right
Call on me, I will be waiting
Count on me, I will be there
Anytime the times get too tough,
Anytime your best ain’t enough
I’ll be the one to make it better,
I’ll be there to protect you,
See you through,
I’ll be there and there is nothing
I won’t do.

I will cross the ocean for you
I will go and bring you the moon
I will be your hero your strength
Anything you need
I will be the sun in your sky
I will light your way for all time
Promise you,
For you I will.

I will shield your heart from the rain
I will let no harm come your way
Oh these arms will be your shelter
No these arms won’t let you down,
If there is a mountain to move
I will move that mountain for you
I’m here for you, I’m here forever
I will be your fortress, tall and strong
I’ll keep you safe,
I’ll stand beside you, right or wrong

For you I will lay my life on the line
For you I will fight
For you I will die
With every breath, with all my soul
I’ll give my world
I’ll give it all
Put your faith in me 
And I’ll do anything

(For You I Will – Monica)

 

Guilty June 9, 2017

The working mummy guilt is real!

No matter how much you do … There’s stuff you can’t do and it eats you up.

 

On the weekends we try to spend time with the kids and plan fun activities for them.  Last weekend alone they got to zip-line and rock wall climb and do a rope adventure course.  They saw a movie and did a craft project and were treated to donuts.  They loved it.

 

In May, we took a week long trip to Jamaica – And it was awesome – And I’m sure they will have happy memories of it for a long time.

 

But that trip meant taking 6 days off work; which means I won’t be able to take another day off for a long time.  That’s where most of my guilt comes from.  The stuff I miss because of work.  Ace had his field day (fun day) at school and neither of us made it.  We don’t chaperone field trips and we don’t drop by to read stories.  I’ve never done a “breakfast with mom” and I even missed the awards ceremony when Jay got a certificate for being a good artist.

I can’t take days off for all that goodness because I need to save them for when someone is sick.  I need to make sure I leave time for the very most important events such as graduation and the first day taking the bus to middle school.  We need to coordinate so that when there is no school due to snow or election day, one of us has the time available to take off.

 

Not being an active participant in school activities also means I haven’t developed any relationships with the other parents.  That in and of itself doesn’t bother me but it does affect my boys … Ace and the rest of the graduates have the opportunity to go to a water park next week but each kid needs to have an assigned chaperone – Even if it’s someone who is there watching their own child as well.  Neither Shaunie nor I can make it and I don’t have any “mom friends” who I can ask to take on that responsibility in my stead.  Ace will not get to go to the water park with his class.

 

I know I am lucky in a plethora of ways.

I’m not a single parent.  Today, it’s Jays turn to have field day at school and Shaunie was able to go and I’ve gotten pictures and videos and he seems very happy.

When I do take a day off work, I still get paid.

I don’t work any weekends.

I have heat in the winter and AC in the summer – Heck I even have a parking garage so I don’t have to get wet walking across a parking lot when it rains.

I have a boss who is understanding if I need to leave early to take a kid to the doctor; Or if I get to work late because a kid had to poop just as we were walking out the door.  (It helps that she’s a single parent.)

I actually like what I do.

 

My being lucky in so many ways though doesn’t diminish any of the guilt for the things I do miss.

I’m sure being a stay at home parent has its challenges.  I see the social media posts … “School is out for the summer. Send help! And wine! Lots and lots of wine!”  <- I just made that specific post up.  … Feel free to use it if you are a stay at home parent and it resonates.  I get it.  Kids can be a handful.  I get to use the bathroom at work without someone staring at me.  I can sip my coffee in the peace and quiet of my car while I listen to the radio uninterrupted.  I have adult conversations over lunch.

In a more serious scenario, I’m not forced to stay in an unhappy marriage because I can’t afford to leave.

 

But gosh darn it, if I wouldn’t prefer to be sweating in the hot ass sun, swatting away bugs, putting band aids on bruised knees, getting my toe run over by a scooter and watching a bunch of loud, not always well behaved 9 year olds run around with spray bottles and trying to toss a frizbee into a net right now.

 

Buh Bye CST – Hello LD June 6, 2017

I thought it was gonna be a standard IEP (Individualized Education Plan) meeting.  We’ve been having these meetings at least twice a year since Jay was in pre-k.  I walked into it with all the confidence and calm of someone who’s been around this block several times and has a good relationship with the school and the current child study team.

 

  • “ … blah blah blah … Jay still qualifies to receive services based on his disability – Specifically, autism”

  • “ … blah blah blah … One-on-one aide, speech therapy, extra time to complete his tests, preferential seating – check check check.”

  • “Have a great summer, see you guys next year.”

 

Instead, the Vice Principal (who is always a part of these meetings) along with the Autism Resource Teacher (who we absolutely adore) hit us over the head with some unexpected suggestions.

Would it be … they wanted to know … OK with us if they moved Jay from being under the CST (Child Study Team) umbrella to being under the LD (Learning Disability) Team umbrella.

Say what now???  What does that even mean?

 

It turns out that a Child Study Team involves more people and provides more services than an LD team.  A Child Study Team includes a psychologist, a social worker, a general education teacher, a special education teacher and any necessary therapists (speech, physical, occupational).

An LD team only consists of a general education teacher and a learning disability specialist teacher.

 

Jays current team thinks that he no longer needs all the support that is provided through the Child Study Team.  In a way, they are graduating him to the LD team.  As such, he will be expected to spend his entire day in a general education classroom without a full time aide.  He will also no longer be pulled out of class for speech therapy.

He will still have an IEP and his current aide will do “check ins” to see how things are going for him in class.  He will have an LD teacher work in tandem with his general ed teacher  to determine his specific learning style and will recommend specific teaching methods and strategies that may benefit him.  The LD teacher will also help to teach him organizational skills, study skills, and learning strategies.

 

 

His current teacher noted that he does better on tests that are administered via old fashioned pencil and paper than he does on tests that are administered via computer.  (It’s too easy for him to just click random answers quickly without even reading the questions so the test can be over.)  We have a plan to address that issue.

 

We have also already identified that he has dyscalcula – Which is a fancy way to say he struggles with math.  Kinda like how people with dyslexia struggle with reading.

(If you’re a word nerd like me and like learning new ones, I’ll also give you this – dysgraphia refers to struggles with writing)

(Speaking of word nerds, how is it that the English language doesn’t have a word which means … “Someone with a big vocabulary” ?  Websters needs to get on that.)

 

So, to wrap this all up, (if you’re even still reading), my baby boy is losing some of his team, and while it’s scary, it’s also exciting.  4th grade will be interesting.  He will be pushed harder than he’s ever been pushed before, academically and socially.  I’m sure he will not always be happy about it, but the hope is that he will be able to rise to the challenge and next school year will be a success.

 

His resource teacher told us as we were walking out … “This was such a hard decision for me.  I didn’t want to let him go.  But in the end, I knew I had toWe can’t let him get away with skating through school.  We have to get him ready for middle school and for the world.”

I got a little choked up.  I know he holds a special place in her heart; Just as she holds one in ours.  She may not formally be a part of his school team anymore but she is still a part of our family team.