Life On The B Side

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

Can’t Tell He’s Autistic April 23, 2018

We heard it again this past weekend.  “No!  Really?  I would have had no idea.  You can’t tell at all.”  It was said by someone who has spent one hour every Saturday morning with our son for the past couple of months.  It’s the response I get most frequently when I tell people that Jay is autistic – even people who know him on some level.  I understand why people react that way.

People expect to see rocking back and forth or hand flapping.  They have come to learn that loud behavioural outbursts mean “autism”.  They assume that a non-verbal 10 year old or a toddler who is lining up toys and watching wheels spin has autism.  Also, that one “weird” kid who is opening and closing the window blinds while all the other kids are playing tag.  Yup, definitely autistic.

They do NOT see my boy being chatty and funny and polite and coordinated and engaged and expressing emotion and playing appropriately and making eye contact and being aware of danger – and think that’s Autism.  I am not saying this is a good thing or a bad thing.  I believe it has both helped and hurt him in the past.  I believe it will continue to both help and hurt him in the future.

I just say this to show that autism is not always visible.  It’s a neurological disorder (or just a different order) which means it’s a brain (dys)function.  How that manifests itself in people varies wildly.

 

You may be wondering then what does make Jay autistic.  How do we know he is autistic if he doesn’t exhibit any of the traditional traits.

2 things.

  1. The boy he is today, is not the boy he always was. We have worked really hard to get him to a place where he can live comfortably – in a world that’s not really ready to accommodate him – while respecting and honoring and celebrating and holding tightly onto his uniqueness.
  2. Even with all the work that we (Jay, parents, school staff) have done, his brain still processes things in a different way from non-autistic peoples – and that is obvious to us in subtle ways on a daily basis.

 

Jay is fortunate that he has a brother who not only understands his brain but is only a year older than he is so they enjoy much of the same things.  They play/work really well together.  Outside of that, friendship is hard for Jay.  He doesn’t always understand the rules of engagement.  He has learned how to navigate a lot of social situations, but children are unpredictable.  They seldom follow set rules which leaves Jay confused and sort of playing catch-up trying to figure out exactly what is happening or what is expected.  Having a friend means caring about what someone else is interested in even if you are not interested in it.  This does not come naturally to Jay.  He doesn’t understand why he has to pretend to like something that he doesn’t like just because it will make someone else feel better.  To him, this feels like a lie.  And we tell him that lying is bad.  These are difficult things to explain.

Jay gets very anxious over things that other people can easily shake off.  So anxious that it can affect his entire day and night and he will wake up the next day still hampered by the previous days “event”.  That event could be:  Being 5 minutes off his schedule, having to eat something besides pizza for dinner on a Friday, losing a game of Pictionary or being called handsome instead of cute because in his mind when someone says “you are not cute, you are handsome”, all he registers is “you are not cute” and that’s an insult.

His is a tricky autism.  He understands SO much of how the rest of us think.  He loves a good joke.  He is pretty good at recognizing sarcasm, but there is also a lot he does not understand.  He’ll engage in a conversation assuming that whoever he is talking to has all the back story and history about the topic at hand.  I often have to jump in to either clarify things for him or add some context to whoever he’s conversing with.  I can only imagine what happens when I am not there.

I am glad he doesn’t have tantrums (anymore), but we are constantly trying to figure out what is causing him to behave the way he does.  Asking him does help, but words are unreliable.

 

Here is an email we got from his teacher last week.  It’s pretty typical of how life is.

 

Good Afternoon!

I wanted to touch base quickly about Jay.  He has been such a joy to have this year and is always so happy.  The past couple of weeks he has seemed a little different – not quite as happy.  Last week I wanted to attribute it to being gone on spring break for a week, and not being on a regular routine for a week may have thrown him off, but it continued into this week as well.  He seems to be upset coming from [his before-care place] in the morning, and has a very hard time moving on from what happened there in the morning, which I’ve seen before, but I am usually able to help him get over it.  He has almost seemed “ornery”, to be honest.  He has not been bad in any way, I just wanted to bring it up to you to see if there had been any other changes for him that he’s having a hard time adjusting to, or if you have seen any change in his behavior at home.  Also, just to let you know, Jay came in very hungry this morning, and he said he ate breakfast at the [before-care], but he wouldn’t tell me what he had eaten.  I suggested he eat the banana from his lunch, which he did, but then later he seemed to get even more upset about food, because it turned out that the breakfast he had eaten had been his lunch for today!  I had him buy lunch because all he had left was popcorn.  Maybe he’s going through a growth spurt and that’s what is affecting his mood!

 

Have a great weekend!

 

 

I am really so appreciative of his teachers.  He’s always had teachers who genuinely care about him and try really hard to help him and they communicate with us when there’s something off.

Only time will tell what any of this means for my little boy and how adulthood will look on him.  My little autistic boy who does chores, takes the same tests as all the other kids in his general ed class, can negotiate his little butt off, is usually ok with last minute changes, loves to socialize, isn’t bothered by bright lights, loud sounds or itchy materials, sleeps well and has shown a willingness to try new foods … but for whom there are few “minor” inconveniences.  Things are all or nothing.  Black or white.  Very VERY good or “the worse EVER“.

 

 

I replied to his teacher and the below was how she closed out her last response.  I really do feel grateful that he has such a supportive team who don’t get annoyed at the things he doesn’t instinctively understand but who try to meet him where he is no matter how many times they’ve been down that same road.

 

We have talked many times about “being a duck” and letting the problem roll like water off his back.  Sometimes it works and sometimes it doesn’t, as Jay isn’t always able to see past the literal meaning of the phrase!  🙂  Jay makes me smile every single day, and I love having him in class.  Hopefully he will be back to his “always happy” self soon!

 

God bless the teachers!  That is all.

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Never Again Starts With You – And Me February 5, 2018

Filed under: Uncategorized — The B Side @ 4:32 pm
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(Quote by Elie Wiesel, Holocaust survivor and funding chairman, United States Holocaust Memorial Museum.)

 

We spent a couple of hours touring the Holocaust Museum in Washington DC.  Before going there, I thought it would be a depressing way to spend a Sunday afternoon.  It wasn’t.

It was sombre, yes.  Depressing, no; I wouldn’t use that word.  I left feeling somewhat angry and confused but mostly enlightened and inspired to make a difference.  To be better.  Kinder.

 

I was confused because I will never understand why there is so much violence, so much evil and cruelty; so little support, so little compassion and mercy in this world.  I will never understand the hatred one must have in their heart to do the evil things that have been done to fellow humans.  It’s beyond my comprehension.  How did people engage in acts like what is memorialized there and feel proud?  Or maybe even worse; how did people observe or hear about these acts and feel nothing?

 

I expect that many people who go to the museum get emotional about it.  I’m sure there have been many tears shed inside.  I would assume that’s particularly true if you are Jewish.  As I watched a video at the museum that showed how Adolf Hitler came to be the man we all hear about and read about today, and I heard the things he said and the way he went about consolidating his power, it was painfully similar to the things we heard here in the US during the last general election cycle as well as the things we continue to hear now.  It made me feel connected to a past that – in a way – never felt like it was mine.  This is not an old Jewish problem.  We are not beyond the kind of fascist ideology that lead to the Holocaust.

fascism [fash-iz-uhm] – a governmental system led by a dictator having complete power, forcibly suppressing opposition and criticism, regimenting all industry, commerce, etc., and emphasizing an aggressive nationalism and often racism.

I had heard people say that Trumps rhetoric was reminiscent of the Nazi’s and we know (because they told us) that the KKK felt an affinity with him but I hadn’t realized until I watched the video just how true that was.  From the talk of how one group is largely responsible for all the problems of another group – to the disdain for the press – to the opposition to protests – to the dismantling of Government agencies and the filling up of the courts with only those whose allegiance is to you.  Even the actual wording or style of communicating and the target audience was/is similar.  (Simple words, repetition repetition repetition, sound strong and sure of yourself even if what you are saying is a lie, make yourself appear to be the only one who can solve the problem, appeal to those who are struggling.)

There were the people who thought he would get more moderate once in power.  There were the people who thought “Well, he’s only targeting them, not me, so I’m not going to worry about it.”  There were those who thought he had checks and balances in place to prevent the worst behaviour.  There were those who acknowledged that he had some ideas they disagreed with but who chose to overlook them because he promised to fix a broken economy.

Incremental things happened while the “good, middle ground” masses looked the other way.  Each thing, which taken on it’s own didn’t seem like a big deal, but collectively they were a game changer.

 

At the museum, I learned about the slow response by the international community to what Hitler was doing.  I learned about the way the refugees had been denied entry to most countries and how that is what really triggered the gas chambers.  Hitler wanted them gone and if other countries wouldn’t take them, then something else had to be done to get rid of them.  They needed an “Ultimate Solution.”

I learned that they not only targeted Jews and Blacks and Homosexuals, but also anyone who they thought was a threat to their power in any way or who would weaken their gene pool.  No-one with a disability was allowed (whether mental or physical) and no authors or artists who they disagreed with.  No-one they thought was unproductive such as gypsies.  They persecuted millions of non-Jewish Polish people including Catholics and intellectuals.

 

In the museum gift shop there was a lot of merchandise that reflected one basic theme … It takes each of us, being aware and being brave enough to speak out, to prevent things like this from happening again.

Mugs telling you that – What You Do Matters

Bracelets letting you know that – Never Again Starts With You 

T Shirts reminding you to – Never Stop Asking Why 

 

I used to think that these kinds of atrocities could never happen again.  But then we heard about the slavery auctions happening in Libya last year and of course there were Nazi’s protesting and even killing someone in my backyard, Charlottesville, and the person in charge of our country didn’t condemn them.  And then there’s Syria.

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This is still happening.

 

It’s heartbreaking and should disgust every single one of us.  It should make every person who has an ounce of decency in them, want to stop this barbarism.  As we worry about what design Starbucks chose for their Christmas cups or if Broadway stars were nice to the VP, or argue over the rights of the cake shop owner, there are young people being kidnapped and mutilated and raped as they try to make their way North.  There are people being cut up and their organs harvested because they are trying to make a better life for their children.

The only reason it’s them and not us, isn’t because we are somehow more deserving or because we worked harder or did something to earn it.  It’s not us, only because we weren’t born into it.  We were born into a life, not devoid of hardships, but riddled with privilege.

 

I obviously cannot stop all the evil in the world, but as a group, as the entire human race, we can.  It is not enough to be silently or passively against evil and oppression.  Each of us can make a difference but only if each of us decides that they will make themselves be counted among the good.  Only if each of us makes ourselves be involved.  Only if each of us stops waiting for someone else to do something.  Only if each of us remembers and then prevents.

History will judge us all by how we respond to the crises happening in our world today.

 

 

Sip N’ Paint – No “sip” January 15, 2018

Filed under: Uncategorized — The B Side @ 2:57 pm

Right off the bat, let me just say that Jay’s party was a success.   Going in, I wasn’t at all sure how it would be received.  I knew he liked art, but a sip n’ paint party for a bunch of 10 year old boys?

The short version is that guests came, there was painting and gifts and cake.  Everyone had a good time and then went home.  The end.

 

But that’s never just it.  Is it?  There are always layers to a story.  Many unseen, but important  ingredients make up the finished product of a cake.

 

There was the moment one Mom commented on how impressed she was with the behavior of all the children.  “I can’t believe all of them are being so calm; especially my boys” she said.  She was right.  We had 10 boys and 3 girls in an art studio.  For 2 hours there was no yelling, no running, no wildness.  Just kids painting and listening and taking pictures and having conversation and encouraging each other when there was a mess up and complimenting each other when they saw something particularly impressive and being patient when someone was not moving along as quickly as the rest.

 

When it was time for the kids to have their pizza and chips, they all sat at 1 big table together, in the back of the studio.  The adults mingled towards the front of the studio chit chatting.   I went to where the kids were so I could give them some info on their goody pails.  As I walked to them I noticed they were engaged in some lively conversations.  I don’t know what exactly they were all talking about.  I felt almost rude invading their space.  I said what I had to say and quickly vacated their area.  I was so happy though that Jay was laughing and talking with friends.  This is a dream come true for me.  And that’s not me being dramatic.  I literally spent years hoping and wishing that moments like this were possible for him.

 

There were sweet moments like when all the kids cheered for each other as their finished paintings were doused with glitter (for those who wanted glitter).  There were sort of funny moments like when Ace loudly announced “I always avoided painting but now I see that I am really good at it.”  He’s not humble, that one.

 

The night before the party I had given Jay a speech about how he had to say thank you no matter what gifts he gets.  He asked me why was he supposed to lie and say he liked something even if he didn’t.  We had a whole conversation about politeness vs lying.  At the party, I realized my speech had not been necessary.  Not for this occasion anyway.  The gifts his friends brought were so HIM.  Art supplies and Captain Underpants books and a Mr Poopy Pants figure and Roblox toys.   I should have known he would only invite people who know him.  He has a knack for finding his people.  He said genuine and enthusiastic thank yous.

 

No-one bat an eye when it was cake cutting time and I said that since Jay is not a fan of the birthday song, we’d count backwards from 10 – in honour of him turning 10.  When we got to 1 and everyone said Happy Birthday and he blew out his candles, I heard someone in the back say, “I like that idea.  It’s like New Years Eve.”

 

The last thing I want to say is this:

It’s Martin Luther King Jr Day here in the USA.  At Jays party, there were kids of different races, genders, body types, family make ups, physical abilities and neurology.  NONE OF IT WAS A PROBLEM. Kids don’t care.  Left to their own devices, kids are friends with kids who are nice to them and who respect them and who have shared interests and who are funny.  It’s really that simple.  In other words, they care about and judge people NOT by color or religion or nationality, but by the content of someone’s character.  Let’s follow their example.

 

A Catching Up Of Sorts October 24, 2017

Filed under: Uncategorized — The B Side @ 12:45 pm

I’ve tried to write this post a few times – It never felt quite right so I backspaced through all the letters that made up all the words.

 

What I’ve been trying to say is that I’ve been enjoying being the parent of an almost teenager.

I don’t know how long this feeling will last.  Maybe once he’s an actual teenager he will become insufferable.  But, now, at 11, I’m loving all things Ace.  He’s really just such a good kid.  And we can have more grown up conversations.  And he is pretty independent.  But he still loves reading to me.  And we can laugh at inappropriate things together.  And he’s getting good grades.  And he avoids “bad company”.  I just think he’s awesome.

 

I also have been wanting to say that Jay has been kinda moody lately.  Lots of whining.  And brooding.  And attitude.  But then lots of laughing.  And wanting to spend time with me.  And being silly.  And then we’re back to grumpy again.  And disagreeable.  And complainy.  He’s pulling decent enough grades but there was a note on his interim report about needing to be more organized and needing to do a better job of listening and following instructions.   I am pretty patient in general.  Shaunie less so.  “What is it?” she asked me recently, after he acted the hell out with the tutor.  “Is it his autism or is he just acting like a {bleep} ?”  I just don’t know.

 

I do know that Ace has become awfully interested in the human body and in how it works and in how things get diagnosed and/or fixed.  He’s now confused about whether he wants to be a NASA scientist/engineer/astronaut or a doctor.  I told him I’d support whatever he chose.  I love that his mind is expanding and exploring.

 

These days Jay is all about the video game Roblox.  And his art.  And Roblox.  And Garfield.  And Roblox.  And making money off his art.  And Roblox.

 

We will have a 4 year old staying with us for a week while his parents take a trip.  It’ll be cool – and fun – I think.  But I was reminded yesterday that he still needs help in the bathroom.  I haven’t missed those days.  lol.

 

This year our Christmas shopping list is pretty short.  8 people; 4 of which are children.  Oh, and yeah, we’re already done with our shopping.  Boom!  Unless – Am I supposed to buy Christmas presents for my ex-husbands children with his current wife?  I mean, they are my sons sisters.   What’s the protocol?  If so, then I guess we’re not quite done.

 

Lastly, lemme just say how grateful I am that we found our tutor/babysitter.  This raising kids thing is not a one person job.  Or even a two person job.  It takes a team.  Friends, family, teachers and BABYSITTERS.  Cause we love the boys but the Moms need some time to do adult things too.  I don’t mean to make anyone jealous or anything but … we got tickets.  To go to a show.  Today.  Yeah, A Tuesday.  Cause we wanted to and we could.  Since we’re adults.  Don’t ask me anything about it till at least Thursday though cause all day tomorrow I’ll be tired – but we ‘re not gonna talk about that.

 

Just like we don’t talk about the new gray hair I found while combing my hair this morning and the fact that I kinda lied to my son about what year I was born in.

It wasn’t my fault.  He was talking to me about Garfield (the cartoon cat) and he said:  “Mom, Garfield is old.  He was first created in 1978.  That’s even older than you!”

Except it’s NOT older than me.   But I didn’t correct the boy.  I just smiled and nodded.  So it wasn’t so much a lie as it was an omission kinda sorta.

Whatever!  I’m going out tonight for a mid-week date.  So there.

 

And I know I said “lastly” like 3 paragraphs ago.  Just go with it.  Ace comes by his constant talking honestly.

 

#MeToo October 16, 2017

Filed under: Uncategorized — The B Side @ 2:14 pm

This will be a short post.

 

It’s been heart breaking to read all the #MeToo ‘s that are online now.

 

It makes me angry that so many women and girls have been through this and it makes me realize how amazing so many of us are that we are able to hold our heads up and handle our business and do the damn thing where our jobs and education and children and spouses and homes and hobbies and friends are concerned despite all the painful and difficult things we’ve experienced – often silently and alone.

 

#MeToo

 

Many years later, it’s still fresh.  I can still feel the icky’s from the first time.

And I can still feel the hotness in my belly at the more recent.

 

Mine have been mild when compared to others … And if I feel the way I feel, I cannot imagine what others are feeling or have gone through emotionally.

 

My heart is with you all and if anyone ever wants to talk – I’m here.  I’m just an email away.

nadibee@gmail.com

 

That is all.

xo

 

My Brain is Fried – And Tired October 3, 2017

Filed under: Uncategorized — The B Side @ 12:55 pm

The same exact people will say ALL of the following.  It’s enough to give anybody whiplash.

 

We want the freedom to own/carry any guns we want.  I mean, it’s just not fair that you should take away my rights.

You though, have no freedom to kneel during anthem.  That’s disrespectful.  And your rights over your own body and over who you can marry, I’ll take those away.  Thanks.

Just do your job and leave your politics out of it.  We especially don’t want to hear from singers, actors or comedians.  Except if you are KISS or Stacy Dash or any other celebrity who shares my opinion.   I’ll even allow Joy Villa, a nobody who wants to be a celebrity, to share her opinion because she’s on my side.

Oh and by the way, it’s all good for city clerks to not do their jobs and refuse to give out marriage licenses.

Yay, the American flag, the American flag, the American flag!!!  Patriotism!!!

Because, people died for you to have freedom.

Just don’t exercise that freedom they fought for you to have.

I mean, you can exercise it, just not in public, or on the job (even though it didn’t prevent you from doing your job), and not while in high school or while performing at your own show or on your own social media or anywhere else for that matter where it might be visible.

Also, yay for the confederate flag, even though it only exists because they hated America so much that they decided to wage war against it and leave to form their own country.  We don’t think that’s unpatriotic at all.

Also, saying Black Lives Matter is a problem.  Not because I’m racist, but because All Lives Matter.

But we can say Police Lives Matter.

Also, it makes sense that we can say “Pray for Las Vegas”.  No need to say “Pray For All Cities.”

As far as gun control goes, it’s silly to think that laws will make a difference.  But let’s make laws against things like abortion.  Oh yeah, we gotta save the babies.  Babies and Guns.  They are my life.

Oh yes, and the Bible.  The Bible says this and that – Which I will use to justify whatever I feel and will also use to make laws that affect you whether you believe in (that part of) the Bible or not.

I’m just gonna go ahead and ignore the parts of it that don’t fit conveniently into my personal prejudices/lifestyle though.

I will also claim to vote based on Biblical reasoning’s but will choose a candidate who has not shown any tendency towards living a Godly life with his many cheatings (in business and in marriage) and divorces and abuse and lies and foul language and lack of empathy.  But yay for saving the unborn babies and persecuting the gays (which he only started saying when he wanted my vote.)

And let’s not forget, we need to build that wall to keep out all the bad Mexicans and we need to ban all Muslims and refugees while we stay silent on the white people who shoot up places such as schools, movie theatres and concerts.

But the good news is that things are going to be totally different now that 45 is in power.  That’s why we voted for him.  Woohoo, change.  What do you mean 45 did something bad?  So what?  Democrats did that too.

Drain the swamp.  He’s so good at choosing the right people for the right positions.

Many of his people had to quit because they turned out to be bad?  I know he chose them, but he’s showing real leadership by firing them.  Oh wait, he didn’t fire them?  They quit?  Still.  Woo hoo.

 

45 on the London attack the minute it happened, without knowing any of the facts:  “Another attack in London by a loser terrorist. These are sick and demented people … Must be proactive! The travel ban into the United States should be far larger, tougher and more specific!”

 

45 on the Las Vegas shooter (via Sarah Sanders):  “It would be inappropriate to make any kind of comment until we have all the facts. Now is not a time for politics. Now is a time to grieve and a time to come together.”

 

His supporters:  Sounds good to me.  No hypocrisy there at all.  Damn Democrats politicizing this tragedy.  How awful of them.

You guys are just too soft.  With your bleeding hearts.  You are snowflakes.

45 was justified to lash out at the cast of Hamilton and SNL and the Emmy’s and anybody who says anything remotely unflattering about him no matter how petty it is even though there are important issues he should be focusing his energy on.

Hillary used insecure email server.  LOCK HER UP!!!

Jared and Ivanka and whoever else, also used insecure email server.  *crickets*

 

Fun But Tiring Weekend September 25, 2017

It started out on Friday evening with me asking which game they wanted to play.  We decided on a thimble, a car, a cat and dog.  Yup, Monopoly.  It was our first time playing non-junior monopoly as a family and it was pretty good.  We had a couple moments of disagreement about whether something was legal or not and we had someone (NOT ME – lol) who was very gassy, but we laughed a lot which is always my favourite thing.  Jay needed some help with his money math but that was ok.  In the end, even though Ace and I kinda partnered up to take Shaunie and Jay down, those darn railroads did me in.  My last 3 rolls landed me on railroads and cost me $200 a pop.  In the end the Ace/Deenie team lost by about $400.

 

On Saturday we spent the morning hanging out at home and doing some cleaning and tidying.  We also, finally – after FOUR delivery attempts – got our full couch.  We’ve been living with half a couch for about a month because they keep coming with 2 of the same side.

At around 4pm, we arrived at 6 flags in Maryland.  Ace and I had a good time going on rides and Jay had a good time forcing Shaunie to go on rides.  (She’s not a ride lover).  We drove go karts and the kids and I did a bungee drop thing.  It was the first day of fright fest, and I expected it to be a little scary but it wasn’t at all.  If you wanted to be scared you have to pay more to go into the haunted houses.  We opted out because they said it’s not recommended for kids under 13.  In a couple years, we’ll try again.

We spent Saturday night with everyone’s fave – Aunty Juddles.  The adults stayed up till the early hours of the morning talking and laughing and it was nice.

 

On Sunday we attended my jobs annual Family Picnic.  They really did a great job of making it fun for the kids.  Rock wall and zorb ball and mechanical shark (instead of bull), petting zoo, pony rides, bouncy castles, gladiator battle zone, carnival games with prizes, face painting, ice-cream truck, snow cones, cotton candy … you name it.  For the adults, there was an open bar.

 

We got home at around 5 pm and by 7:30 everyone was ready for bed.  Shaunie and I managed to stay up long enough to watch one episode of a show.  It was good and we’re looking forward to watching another tonight.

 

And now, here we are.

Even though they went to bed so early, I still had to wake Ace up this morning.  As we were brushing teeth this morning getting ready for work, I said to Shaunie:  “Another early night for everyone tonight?”  She eagerly agreed.  That one night of decent sleep was not enough to adequately recuperate from the weekend.  But it was fun and definitely worth it!

 

How was your weekend?