Life On The B Side

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

On Sharing Stories January 22, 2019

On some random evening for some random reason I found myself telling Ace and Jay stories about themselves as babies and toddlers. These are times that the boys don’t remember or don’t remember much so it was fun clueing them in on their own lives.

 

The boys were enthralled.

 

They laughed heartily when I told them about the time Jay threw up on Ace while they were on a kiddie rollercoaster. Jay threatened to use that tactic again as a weapon against Ace should he need it. Ace was rolling on the floor laughing and pretending to gag.

 

They sat raptured as I told them about funny (or gross) things that happened back when I bathed them together in a tub and about interesting sleeping arrangements we had while on vacation. I told them scary stories about Jay getting lost at the park and Ace getting lost at Disney World. Some of the more embarrassing ones (for them) I will keep off the internet but they know now and find them funny.

 

A few nights later, inspired by the recent trend of posting 10 yr old pictures side by side with a current picture, Shaunie and I were laughing at each others old Facebook pictures. We weren’t planning to post them but we still had a good time making fun of ourselves and the outfits and hair do’s we had back in 2008. Jay came in and immediately joined in on the fun. He wasn’t interested in our pictures though – He wanted old pictures of himself.

I handed my phone over to him and watched as he delighted in his 1 and 2 and 4 year old self. One by one he clicked on and then perused the photos in albums titled, Summer 2008 and Jays 1st Birthday and Trinidad ‘09 and Fall Fun 2011 & Bronx Zoo 2012.

He was happy when he stumbled upon pictures of himself at the Thomas & Friends Live Show.  “Oooh, now that I see the picture, I remember that” he said.

As he clicked on photo after photo I gave him quick tid bits of information that the picture triggered in my memory.

 

Thinking about that trip we took to the Bronx Zoo brought back a lot of happy memories for me. I told Jay what a good day we had had. I told him that it was on that trip that he had first pointed to something wanting me to see it too. I doubt if most parents can remember the first time their child pointed or requested their attention but I do. I remember. He came across a picture of himself laying down in some bushes/leaves (off the track and away from everyone) and asked what he was doing there. I told him that there had come a point in the day where he needed a break so he took one. Back then things like that worried me a lot. It seemed so strange. Now when I think about it, I think it’s amazing. Those days were the building blocks to what we have now. Jay knew what he needed and snuck off the crowded path to have a quiet moment in the bushes. I knew, even then, that I needed to give him that.

That one memory domino’d into another. It was also a trip to the Bronx Zoo that produced another of Jays good firsts. He had gone there on a school field trip. When he came home I did what I always did. I asked him how his day had been and what he had done. I didn’t expect an answer. Even though he was 5 years old at that time, he was just beginning to talk and had never answered a question such as that. That day though, after being at the zoo, he told me that he had seen animals. It was an amazing moment. Yeah, I have a soft spot for the Bronx Zoo and I do appreciate any chance to think fondly about it.

 

~*~

 

When I initially began blogging, it was for purely selfish reasons. I needed it. I was stressed out and tired and worried and lonely. I needed a place where I could let out my frustrations and fears and to commiserate with other people who were also frustrated and fearful.

 

Now, I see it as a love letter and a gift to my children. I do hope they read it one day and that they indulge my parenting errors. I hope they don’t judge my flaws too harshly, knowing that I only ever had good intentions. I look forward to hearing their comments on some of the stories I’ve shared here. I have no doubt that for a great many of them, the take-away was different from their point of view.

For now though, I will tell them about the time Max the dog jumped into the pool to save what he thought was a drowning Ace and about how Ace attended my cousins wedding in Jamaica when he was 2 years old. I was a bridesmaid in it and Ace yelled out in the middle of the ceremony “Mom, what are you doing up there?”

I will tell them about the time their fathers picture was on the front page of the Newspaper below the heading “Parents and students show up for the first day of school” … but the child he was carrying was neither Jay nor Ace. Jay was actually in the front of the line happily holding his kindergarten teachers hand and CC was carrying a child who came on the bus but didn’t want to get off it.

 

Later, they can read the things I’ve posted here; much of which they would have been old enough to remember. It’ll make for interesting conversations I think.

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It’s A Birthday January 10, 2019

cuphead bday.jpg

(Cuphead, pictured above, is Jays current fave video game)

 

 

Jay was 3 years old when I began blogging.  He turns 11 today.  Crazy right?

What a wild 8 years it’s been.

There’s so much material I could pull from if I wanted to reflect on how far he’s come.

 

I will instead focus on just 2 pieces of info.

Last week Ace and he had doctor appointments.  Even though he is 16 months younger and about 2 inches shorter, at 70 lbs, Jay now outweighs his brother by 3 lbs.  He’s not overweight at all but we now frequently have to deny his requests to eat MORE (because we know he’s full) and we sometimes have to hide snacks so he doesn’t inhale them all leaving none for his lunch box at the end of the week.  We also had to put restrictions on his school lunch account because he was really over doing it with the giant chocolate muffins they have there.

It is a JOY for me to write that.

You guys KNOW how much of a struggle it was getting him to eat.  You know he used to eat literally NOTHING but cheese doodles.  You know we were so concerned about his nutrition that we had blood work done on him twice in 3 years and tried to take him to an eating disorder clinic but we were denied coverage.  It was a S.T.R.U.G.G.L.E.

He has become a kid who eats chicken and rice, tacos, fish, pizza, lasagna, hamburgers with ketchup, bacon, pancakes, beans, carrots and a long list of other items.  He willingly tries new things on a regular basis.  It’s thoroughly amazing!

 

Two days ago he said to me:

Mom, my birthday is coming up and I know I had asked for a *Robux gift card but I don’t need it anymore.  I got one for Christmas and there’s still $4 left on it.”

That’s him.  He’s not the one to take advantage just because he can.

 

He did ask for something though.  He wanted to bring cupcakes to school for his classmates.  As he put it:  “This is the last chance I have.  I can’t bring cupcakes in middle school.”

 

He’s still getting more Robux and yes, he’s absolutely getting cupcakes at school – and then whatever he wants for dinner.

Happy Birthday my sweet, funny, sometimes snarky, affectionate, talented, stylish, handsome, love bug of a son.  You are a wonder.  It has been and continues to be the joy of my heart to watch you grow.

 

 

 

 

[If you are new to my blog and want to get a feel for how drastic Jays progress has been over the years in other areas, I suggest you read this post from 5 years ago.]

 

*Roblox is a video game that he plays and Robux is money you can use only in that game to enhance your experience.

 

Perfectly Imperfect Holidays January 2, 2019

So how was everyone’s Christmas?

I know it’s January now and people are talking about New Year resolutions and the like, but I have some catching up to do.

 

Our Christmas did not go the way we had planned. Does that mean it was good or bad? Continue reading to see.

 

On Saturday, December 22nd, we had tickets to see a play. It was to be a cute show; geared towards kids; about Santa and his elves. Everyone was up, fed, dressed and in the car on time. Then we hit traffic on I-95. Not just any old traffic. Major, not-moving, all the roads including side roads were jam packed traffic. The GPS initially said we’d be 10 mins late to the show. “OK”, we thought, “that’s not so bad”. Fifteen minutes later, it climbed to us being 20 minutes late and forty minutes later when we were not even half way there yet, the GPS said we would be 35 minutes late.

The show was not going to happen. Ugh!

We were disappointed about the wasted money but more so about missing out on the event that we thought would kick-start our feel good family Christmas weekend. The kids took it in stride. They said it was fine and that we shouldn’t worry about it and suggested we go to the movies. So we did. We even splurged on movie theatre snacks which you know is a treat because they are not cheap. We watched Bumblebee and everyone thought it was good. (The kids mostly). Yay!

Following the movie we made a stop at the cell phone store to see what options he had because the day before Ace had dropped his in the toilet. Ugh! FYI – It turns out that putting your phone in rice for a couple of days really does work!!! Yay!

The next stop was a Jamaican restaurant that we patronize when we’re in the area. I made a comment that was just meant to be funny but it led to us being gifted a bottle of sorrel – which really was very good. Yay!

All in all, even though it wasn’t the day we planned, it turned out pretty good.

 

On Sunday, we had plans to go horse-back riding. Once again, everyone was up, fed, dressed and in the car on time. As soon as we pulled out of the drive way, we got a call saying we needed to reschedule because the area was too wet/muddy due to all the recent rain. Ugh!

We spent the entire day being lazy. I mean, there was some light tidying up, but besides that we watched lots of TV, including a Christmas movie. We watched A Christmas Story – the one with the “leg lamp”.  I had never seen it before which apparently is blasphemous.  The kids were excited because it was Christmas Eve Eve which was cute. It’s such a great feeling seeing them be happy. The day may have been totally different than planned but it turned out pretty good.

 

 

To be honest, that’s kind of how the entire holiday week went. Things not going according to plan, but then being imperfectly perfect just the same.

Even our New Years Eve plan didn’t work out.  I had bought us tickets to an event which ended up being cancelled on Dec 28th.  My money was refunded and Shaunie and I spent the day/night reading and eating left overs and generally having the best time at home just relaxing.  At 10 pm on New Years Eve we both said how glad we were that our event had been cancelled.  I made it to 12:05 or something like that.

 

Ultimately, over the past week or so, we went to Church and spent time with many loved ones and yes, Santa was good to us.  We did make it to 2 shows.  The Harlem Globetrotters on Dec 26th and on Dec 30th we saw Hip Hop Nutcracker.  It was a really lovely way to end 2018.

All that’s left is to send everyone lots of well wishes for a happy and healthy 2019.

xoxo Deens.

 

The Hawaiian Raccoon Boy December 21, 2018

What the heck is a Hawaiian Raccoon Boy you ask? Allow me to explain …..

 

On Wednesday evening Jay changed his mind about what he wanted to dress up as for Thursdays “character day” at school. The original idea of being a “business man” was apparently too boring.  It was kind of late in the game to be making those kinds of changes though so we had a brainstorming session and went with the easy choice of “tacky tourist”. That had been Ace’s Halloween costume so we had all the necessary pieces. Gaudy, floral button up. Fanny Pack. Bucket Hat. Sandals which were to be worn with socks. You get the picture.

 

Then, in what I thought was an unrelated action, Jay brought down a clip-on raccoon tail that he owns. (Don’t ask why he owns that. I honestly have no idea.) The tail though had split in 2 so he asked for help putting it back together. We told him we’d fix it but that it wasn’t high on our priority list so we wouldn’t get to it THAT night. He was not happy at all but we were un-phased and sent him to bed.

 

The next morning, I got a message from Shaunie saying that Jay had glued the tail back together himself AND had worn it to school.

 

I know I know. You have more questions. What does a raccoon tail have to do with being a tacky tourist? Let me tell you.

I’m just kidding. I don’t know any more than you do. It just did as far as Jay was concerned. We let him be him.

 

 

The other thing about Thursday was that the choir kids had a field trip planned. It was their last show of the season and they went to a Senior Living Community to perform for the residents. On our drive home in the evening I asked Jay about his day.

 

Jay: I had a great day. We went on our field trip and sang songs for old people. They liked it. Then we talked to them for a little bit before going back to school.

 

Me: On Yeah? What did you guys talk about?

 

Jay: They asked if we were ready for Christmas and I told them I was a Hawaiian Raccoon Boy and I made the noise for them.

 

*Proceeds to make an awful hissing/screeching sound*

 

Me *slightly horrified and slightly finding it hysterically funny*: Ohhh! Well, ahm, what did they say about that?

 

Jay: They said it was cool. I had teeth too. The vampire teeth that we had at Halloween so I put them in when I made the raccoon noise.

 

And that my dear friends is what a Hawaiian Raccoon Boy is and what the lovely folks at the Assisted Living Community were treated to. I’m sure it was a first for them no matter how many years of life experience they had. They are most welcome!

 

A Life Appreciation Post December 11, 2018

We are not big on the kids sleeping over at friends houses – if we don’t know the family well. That said … Jay got invited to a sleepover to celebrate one of his school friends birthday. My initial thought was no. But my mind kept drifting back to … well, maybe.

Having good friends is huge. For many autistic people, having any friends is huge. I mean, just yesterday the mom of a popular facebook page posted the foll:

 

Screenshot_20181211-102225_Facebook

(As you can probably assume, her son Greyson is non-verbal and uses a device to communicate.)

 

I had met the mom issuing the sleepover invite before. She seemed very nice each time. As Jamaican people would say “mi spirit did tek to her”. Jay had been invited to and had attended that same kids birthday party last year so this is not a brand new friendship.

After talking to the mom 1 more time and asking questions like “which other kids that we know will be there and *do you have a gun in your house?”, we agreed to let him go. He was so excited about it and the other kids were excited to see him when we showed up – that made it easier for me to walk away after the drop off. I want this for my son. I want him to have friends and to be included.

 

*~*

 

For the first time – I think ever – Ace had Shaunie and I to himself for an entire evening and night. He’d been asking to go to a Hibachi restaurant but since we knew Jay wouldn’t eat any of the food there it hadn’t happened. This was our chance. We didn’t tell him where we were going and to see his face light up once the realization hit was awesome. The evening did not disappoint. From the initial giant flame to clean the stove area, to the flaming onion volcano to the catching of the food in your mouth to the fake egg being thrown at him. He loved it all. And I loved watching him love it all. He tried the miso soup and said it was good. He did not eat any of the salad but … are you ready?… he ate a piece of zucchini AND a mushroom. Of both he said “It was ok but I don’t want anymore.” He did like the rice and although he had chosen to order steak, he said the best part was the complimentary 3 pieces of shrimp he got. Neither of those meats are things he typically eats.

I was just so proud of him. I want this for my son. I want him to have a wide variety of experiences and to know that even though sometimes his wants are not immediately do-able, when we can, we will do, just for him.

Following the hibachi dinner, at Ace’s request, we browsed Barnes and Noble where we each got a new book.

 

*~*

 

The next day we picked Jay up and heard rave reviews from him about how much fun he and the other boys had. He didn’t even want to come home. [Well, hurt my feelings won’t ya 🙂 ] The mom told us how pleasant of a kid Jay is and how polite and how much of a gentleman. It made me feel so good. I know I say this all the time, but truly – I NEVER COULD HAVE IMAGINED THIS WHEN HE WAS YOUNGER. It’s the most wonderful thing to witness.

 

After we got home it began snowing so we spent the day reading books and baking and playing in snow and finally settled down in front of the TV to watch Christmas Chronicles (a new holiday movie on Netflix). As I sat there, cuddled with my 2 boys under a blanket, listening to them laugh and seeing Shaunie in her spot on the other side of the couch, also under a blanket, the fireplace lit, the Christmas tree lit and already overflowing with presents, the snow falling outside, I had a moment of total and complete contentment. Despite a whole lot of crazy and hectic and worry, we have such a good life and I am so blessed.  I don’t take any of it for granted.

 

 

 

 

*If she did own a gun, I’d’ve had follow up questions about the storage of said gun.  I mean, you can’t be too careful with 7 boys ages 10 and 11 running around.

 

On Social Skills November 6, 2018

Jay : Who swapped my good gel pen for THIS? *holds up a regular ball point pen in disgust*

 

Ace : First of all, I’m not answering any questions without my lawyer present.

 

Me : *Takes bow for my excellent parenting skills in teaching Ace his rights*

 

 

We were launched into a full-fledged court proceeding with Jay serving as prosecutor, jury and judge. He would not stop until he had solved the mystery of the missing pen – and truly, the entire thing was quite entertaining.

I was deemed innocent due to having no motive since I had given him the now missing pen in the first place. Next, Ace was deemed innocent due to his willingness to let Jay borrow his gel pen. That meant, through the process of elimination, Shaunie was found guilty of pen theft. She vehemently denied the charges, but without an alibi, her goose was cooked.

~*~

One of the 3 main characteristics of autism is impaired social skills; and we have certainly had many moments where his impairment was severe and noticeable. Too though – and more often than not these days – there are moments when Jay’s social skills amaze me.  Moments like that “courtroom hearing” where he seemed to perfectly understand all the typical features of pretending and sarcasm and teasing and hyperbole.

 

There are still instances though where he hits a bump in the road – so to speak.

Jay came home from school upset and confused about a situation that had taken place earlier in the day. For some unknown reason he had told a classmate that she has buck teeth. Of course, it hurt her feelings and she complained to the teacher who made Jay apologize. The problem is that he didn’t understand what he had done wrong.

I wasn’t making fun of her. I didn’t laugh at her. I just told her that she has buck teeth. She does have buck teeth.”

It was quite a task trying to explain to him that while he may not have meant to hurt her feelings, he had so it was his job to fix it. His intention was not the point.  I told him that in general it isn’t a good idea to talk about someones looks unless you are saying something nice. I tried to explain that his observation probably made her feel self-conscious and therefore, feel badly.

He wasn’t getting it.

Or maybe he was pretending not to get it. Sometimes it’s hard to tell with him because I know him and I know he’d rather pretend that he doesn’t know something than to own up to doing something wrong.  Not that he’d outright lie, but, usually I can see it on his face the moment the connection is made. The confused look gives way to a smirk (which he tries to hide by lowering his head). This one was tough.  I’m still not sure where his head is at with this.

 

One thing I do know is that when it comes to getting what he wants, he knows how to play the game and his social skills are impeccable. He lost a tooth recently and “the tooth fairy” forgot to put the money under the pillow. Jay knows about the tooth fairy *wink wink*, but he still likes to keep up the charade. You know, money and all that. When he asked why the tooth fairy hadn’t come by with money, I told him that I’d simply forgotten and that I’d just hand him the cash. His response? He started giggling and said, “OK. I’ll take it. But can the tooth fairy still come tooI want to be rich.”

 

 

 

Claim Your Place September 10, 2018

I am not a stranger to the dark

“Hide away,” they say

“Cause we don’t want your broken parts”

I’ve learned to be ashamed of all my scars

“Run away,” they say

“No one’ll love you as you are”

{All italics are lyrics from the song This Is Me in The Greatest Showman}

 

 

People get uncomfortable when they come face to face with – different/new (or new to them).  People don’t like to be uncomfortable.

 

A woman should be cute and quiet and lady-like and know her place.  She shouldn’t be loud and assertive and stand up for herself.  

Black people shouldn’t bbq in the park and gay couples shouldn’t publicly show affection for each other.  

Tattoos and piercings don’t belong in board rooms or operating rooms or holding a gavel.  

And definitely, people with disabilities/physical abnormalities should not be brought out into public spaces where they might disturb other – normal – patrons.  They are loud and people want quiet.  They are fidgety and people want stillness.  They speak in an unusual way and people want what they are used to.  Their wheelchairs take up so much space.  They move at their own, maybe slower, pace and people want to rush through.  They look funny with their protective helmet or dwarf fingers or extra hairy faces and it might scare the children. 

 

 

But I won’t let them break me down to dust

I know that there’s a place for us

For we are glorious

 

 

“What are they doing?” Jay asks as we lie in bed watching The Greatest Showman. 

“They’re putting up posters because they’re looking for interesting people to join the show,” I tell him.  

A few minutes later, he’s back with more questions.

“Why are those people ripping the posters down?” He wants to know.  I am in my element now.  Well, I say, those are people who want to be in the show because they have something special to offer so they need the poster since it has all the information on it. 

 

 

When the sharpest words wanna cut me down

I’m gonna send a flood, gonna drown them out

I am brave, I am bruised

I am who I’m meant to be, this is me

 

 

I continue softly, “Those people were all told they were weird and now they can join a show that celebrates them.”

 

One of the most fierce and powerful scenes is the singing of This Is Me when they are denied access to the high society party.  They were done with being hidden in the shadows and were ready to claim all their beautiful weirdness.  I loved it.

 

Look out cause here I come

And I’m marching on to the beat I drum

I’m not scared to be seen

I make no apologies, this is me

 

 

If I could make one song the anthem for my family, this would be it.  Oh how I want my boys to be strong and secure in who they are.  I don’t want Ace’s sensitivity to make him shrink away from speaking up.  I don’t want Jay to purposely exclude himself out of fear that he’ll be called weird.  It takes a lot of bravery to boldly say, this is who I am, just deal with it. 

There were so many times when there were people who probably wished that they didn’t have to deal with the likes of us.  The day at the supermarket when Jay had one of the biggest meltdowns he’s ever had.  The day at his neighborhood school where we fought over him zipping up his jacket himself.  The morning at Church where we both left sobbing.  In classrooms where Ace put his teachers through the ringer.  Going through security at the airport.  Trying to leave the zoo.  At my own wedding.  You name it. 

We never quit trying.  I didn’t have it in me to stifle my boys adventures because I was worried about making other people comfortable. 

Yes, we went to autism friendly movies and we chose aisle seats for Thomas Live so we could make a quick and easy get away if necessary and we turned down some invitations and Jay was in a self contained special education class for a while and Ace got help for his ADHD but every single one of those things were for US and to make my childrens lives better.  NOT to appease strangers. 

 

 

Another round of bullets hits my skin

 

 

On Facebook, my friend tagged Shaunie and I in some pictures from her wedding.  In 1 of the pictures from the photo booth, we were kissing; just as most of the couples who took booth pictures had done. 

Two women kissing is still weird for many.  “We love you guys and we want you to be happy,” they say “we support you, but why do you have to be so public about it?”  How easy would it be to ask the friend to untag us or take the picture down altogether.  As easy as it was for Zac Efron to let go of Zendaya’s hand in the movie when his father saw him with her; a “beneath him” circus performer.  In that moment it was easier for him to love her behind the curtain, out of everyones view.  In the end, his love was strong enough to drown out his shame and he loved her openly and proudly.  That.  That’s what everyone deserves.

 

 

Well, fire away cause today, I won’t let the shame sink in

We are bursting through the barricades

And reaching for the sun

We are warriors

Yeah, that’s what we’ve become

Won’t let them break me down to dust

I know there’s a place for us

For we are glorious

 

 

Parents coach and remind and give advice all the time.  Among the most important of these is for me to teach my boys to be true to themselves.  To not be followers.  To not dim their shine to make someone else happy. 

Boys:  Don’t hide away.  Not even the supposed broken parts.  The right people will love you as you are.  Be a glorious warrior.  There is space enough for you.  All of you.  March to your own beat.  Don’t be scared.  Be seen.  Be you!

 

Oh and the last thing … Be sure to make fun of your moms singing by howling like a wounded dog every time she dares belt out a tune. 🙂