Life On The B Side

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

Missing My Boys – and – A 504 At Work August 7, 2017

Filed under: ADHD,Autism,Family,Special Needs Kids — The B Side @ 1:04 pm
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On Friday, we stayed up until after 2 am catching up with friends – While their two sons slept in our two sons beds.  It was nice – But I miss my boys.

We spent our Saturday night hanging out with friends and family at a 50th wedding anniversary celebration.  We had a great time – But I miss my boys.

Now, it’s Monday – And I’m on my lunch break – And it’s raining  – So I’m at my desk – Eating peanut butter straight out of a jar – And the boys have been with their Dad for 2 weeks – And the kids being gone does make it easier to focus on things such as packing and moving – But I miss their laughter and the feel of their skin and their stories – So my brain wanders back to a time, 5 years ago, when ….

 

~*~

 

I’m sitting at my desk and my cell phone rings.  It’s not a number that I recognize but it has the same area code as where we live.

Hello.

Hi Mrs C.  This is Ace’s teacher calling to tell you that he’s having a very good day today.  I have you on speaker.  The entire class can hear you.

25, six year olds kids shout out … Hi Mrs C.  There is lots of giggling.

I laugh … Oh!  Wow.  Well, this is a great phone call to get.

I just wanted you to know that he’s been sitting quietly and paying attention and he and his partner have done a great job with their project we’ve been working on.

I say how proud I am of him and that I am very happy to get this news.

He sounds a little nervous as he chimes in to tell me that he is being good and to tell me about his project.

I don’t want to say anything too cheesy so I just say I love him and I am very proud of him and that he should keep it up.

The call ends with a chorus of goodbyes and I hang up – Smiling.

 

~*~

 

It was towards the end of first grade and Ace had fairly recently been diagnosed with ADHD.  His 504 plan was brand new and as a part of the plan, his teachers were supposed to give him positive reinforcement.  That phone call was them wasting no time in following the plan.  It was the first such phone call I had ever gotten.  I loved it.

In speaking with his teacher on the last day she told me that in that last month of school, she had gone on to make those phone calls to other parents as well.  She did it partly because she didn’t want the other kids to feel like Ace was getting special treatment and partly because it was just nice.

For us, it had been a rough journey getting to the point where my boy got a diagnosis and where a plan was implemented – But I was happy to know that other kids were benefiting from it as well in some small way.  It made me feel good to know that other parents got to share in the sweetness that was that phone call.   It can make all the difference when you are at work – On a Monday – And it’s raining – And your lunch is peanut butter straight out of a jar.

 

 

 

 

The Good (?) Part About Moving July 26, 2017

Filed under: ADHD,Autism,Family,Special Needs Kids — The B Side @ 11:22 am
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If there is a good part about moving, it’s this:  Finding lost treasures as you sort through, throw away, pack up.

 

I was actually going to get Ace’s birth certificate (to renew his passport) when I saw a plastic bag overflowing with papers.

Well, I thought, I might as well go through this mess and get rid of whatever junk I can.  There’s no point in bringing it to the new place.

I got to work – And along with a trash can full of stuff that I threw away, I also found a CD of pictures from my bestie’s wedding.  They’re about to celebrate their 14th anniversary so:  a) Pictures on disc were a thing back then and b) I was skinny and there are pictures of me in a bikini in which I don’t look half bad (if I do say so myself).

 

I found lots of evaluation paperwork and school reports from when Jay was 4 to 6 years old.  Back then, he was still getting “N” – Not Yet Mastered – in areas like “Writes Recognizable Letters” and “Counts from 1 – 20” and “Names Shapes” and “Identifies Body Parts”.

There were also communication logs from one of his stints in a social skills therapy group.

 

Jay was calm upon coming to the office but resists being guided.  He has begun to follow my finger pointing.”  Oct 2, 2012

Jay is very easily distracted and has difficulty regulating and getting into engagement.  He responds to his inner sensations and not outside relationships.  He is now tolerating spinning on the board and being pushed on the swing a lot better.  He did some cutting and played with putty.”  Oct 9, 2012

 

Oh sweet boy, you’ve worked so hard and I am so impressed with where you are today.  You had to learn how to tolerate spinning and swinging?  Now you beg us to take you to the “big amusement park” so you can get on the big roller coaster.  I can’t wait to see what 4th grade will bring.  I’m not nervous at all.  Just excited.  Amazing right?

 

Then there were the folders from Ace’s 1st and 2nd grade classrooms with his work in them.

In first grade, the kids were encouraged to keep a diary and write down at least one thing each day.

 

Oct 12, 2012My babae brin a pumpkin.

(I have no idea who babae is.  Wish I did.)

Oct 15, 2012why can we have a outside lunch or an art lunch. Why!

Oct 18, 1012I,m gowen to korf my pumpkin.

Jan 15, 2013I have a Bumbol Bee Transformr. I have a lagow areplan.

Mar 13, 2013I am gowing to get a bowinaroo.   I am going to the srkis.

June 20, 2013I can welcome new neighbors by saiding hellow.  I will might discover that they frendly.

 

Then on the first day of second grade there was this letter.

Dear 2nd Grade teacher,

Hi I am Ace.

I am exsidid.

I am looking forward to have fun.

What dos 2nd grade look like.

 

Love,

Ace

 

Now he’s about to start middle school and in case anyone was wondering, his spelling has come a LONG way 🙂

 

Moving is a pain in the butt, but going through all these papers was actually fun.

 

Sneak Peak July 18, 2017

We’ve had a teenager staying with us for a couple of weeks now and let me just say that it was a shake up.

 

First of all, she’s a “she” which is quite different from having 2 “he’s”.   Hers is a world of making matching tie-dye bandanas with her best friend and taking selfies showing off her various hair styles.  It’s a world of nail polish and emoji’s and the mall.

 

She’s 14 so she’s not a kid, but she’s also not an adult.  It’s a fine line to walk for both her and us.

Even though she’s on vacation, we are still who we are so she has chores and the tutor who comes (yes, even during the summer) to work with our boys has been helping her also.

 

We monitor social media posts to make sure they are age appropriate and try to find the sweet spot between outfits that are cute and trendy but not too “grown”.  We still have to tell her to clean up her room – all while talking about crushes and suicide and drugs and abortions and STD’s*.

One minute we are in the throws of peer pressure to smoke and the next thing you know we are painting toe nails and singing songs from High School Musical and drinking strawberry milk.

 

Being a teenager hasn’t changed.  When she writes, she decorates her pages with hearts and the dots over her i’s are big circles (to look cute).

Yet, teenagers nowadays are living a totally different existence than the one I lived.  It’s scary.  They have too much access to things they are not mentally equipped to handle.  There is so much pressure to be raunchy.  Thanks to the few who have turned bad publicity into lucrative careers, things that my friends and I would have thought were scandalous have become “goals”.

 

Her time with us is coming to an end.  I will miss her a lot and I’m sure the boys will too.  It’s been a joy seeing her have fun and experience new things.

We’ve laughed a lot.  In addition to Fun Land and the river, we’ve played board games and Uno and been to a water park.  Shaunie and I were even able to go on a mid-week date since we had a babysitter.  She’s been VERY tolerant of Ace and all his talking and she’s been completely unphased by Jay and his moods.  Her and the boys have developed a relationship where they trust her and love hanging out with her while they watch TV, but they fight over who has to sit in the middle seat in the car.

The 3 of them ganged up on Shaunie to tease her about being scared to go down the big slide and they really get a kick out of it any time her and I make fun of each other.

 

Having 3 kids means more.  More fun and more laughs and more hugs and more “I love you’s”, but also more money and more mess and more tiredness.  Kudos to you guys who have 3 or more kids.  It’s a JOB.

Taking it all into consideration though, she’d be welcome back at any time.

 

We are on the cusp of having full time teenagers and I can only imagine what things will be like when my boys get to be the age she is now.  Based on what we saw over the past 2 weeks with regards to the topics of conversation, I’d love to think that it is far away but the fact is that it is less than 3 years away.

Having her has been …. eye-opening, and interesting, and scary, and helpful, and heart stopping, and a breath of fresh air, and tiring, and a treat.

 

 

 

*We are Aunts so I think that makes it easier for her to open up to us about certain things than with her mom and yes, we tell the mom everything that we think is even remotely concerning.
 

Our DMV Summer July 12, 2017

Filed under: ADHD,Autism,Family,Marriage,Special Needs Kids — The B Side @ 11:36 am
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Lost camera, aching feet, bad bruise on hip, scratched knee, drinking contaminated water, bug bites, and sore finger tips – All in the last 2 weeks.

We’ve been having a great summer.

That’s not me being sarcastic.  We really have been having a good time.

 

I lost my water proof camera when we went river tubing.  It was my fault.  I rested it down in the drink pocket of the tube to help Jay and the next thing you know we both fell over and there went all my pictures from trips taken over the past 3 years.  I dived down trying to retrieve it, but river water moves quickly and it’s sandy and well, maybe it will wash up in China and someone else will get to use it.  Good for them.

Besides that little mishap, the tubing was relaxing and beautiful and the kiddos had a blast.

 

The aching feet and the contaminated water came about when we decided to spend the day touring the National Mall in Washington DC.  We’d been there a few times to various museums – Sometimes with the kids and sometimes not.  This trip though was because Ace has been asking to go to the Air & Space Museum and I’ve been wanting to take them to see the Lincoln Memorial and White House.  We decided to take the train into the city which only added to the fun for the kids.

Following the museum we got ice-cream and headed towards the other end of the mall.  Along the way we stopped to dip our feet in a big fountain, saw some trapeze artists from the circus doing a free show outside, bought over-priced pizza and iced coffee and posed for pictures.  After what felt like a lifetime we made it to the World War II memorial which I had never really checked out before.  It’s pretty cool in that there’s a big water fountain in the middle and then columns with each state etched into it.  People were finding the state they were from to take pictures.  By that point, we were so tired, even though we could see New Jersey, we couldn’t walk to New Jersey.  Oh well.  Did I mention that it was hot and sunny?  No?  Oh, well it was.

EVENTUALLY – (It is a LONG walk) – We got to the base of the Lincoln Memorial and it was time to climb the 87 steps that take you to the top.  *Fun fact* : 87 is equal to the “fourscore and seven years” from Lincoln’s famous Gettysburg Address.

Even though my entire party was complaining about being tired, it was well worth the journey.  Jay announced that it had been a dream of his to see the statue (who knew?) and we all enjoyed the view of the Washington Monument from that vantage point.

But people, we still weren’t done walking.  We had to walk almost the entire way BACK to get to the nearest Metro stop.  Whew!  That’s when we came into contact with the contaminated water at a drinking fountain.  I don’t want to embarrass anyone though so I’ll leave that story alone.

 

We spent last Sunday at “our river”.  (A different one from the tubing).  I love the river.  We packed a cooler and found a new (not crowded) spot and just hung out.  There was a little water fall area that the kids kept sliding down.  I succumbed to peer pressure and decided to give it a try.  That’s where the hip bruise came from.  Hello rocks.  Note to self, leave kid things to kids.

We had snacks and climbed rocks and just spent a lovely afternoon with nature.  We closed out the day with a fire in the backyard and a bushel of crabs.  (Hot dogs cooked on the fire for the kids).  *Insert bug bites – despite those tiki bug torch thingys – and sore finger tips.*  We remedied the bug bite situation with bug spray and just dealt with the sharp edges of the crabs because – deliciousness.  And beer.  Beer helps to dull crab finger pain.

 

Yesterday we dressed up as cows to get free Chik-Fil-A and hit up a local fun place which included go karts and video games.  We have tickets to attend a reggae & wine festival and are hoping the weather is good enough for us to make it to a water park soon.

 

I hope everyone has been making the most of their summer; short as it is.  That doesn’t mean we are not thinking ahead to Christmas though so if anyone wants to gift us nut crackers for next summers crab eating, that would be just lovely 🙂

 

 

 

 

(p.s.  The DMV is DC, Maryland and Virginia)

 

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.