life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

Bespectacled March 23, 2017

Filed under: Autism,Family,Life on the Jay train,Special Needs Kids — the jay train @ 9:57 am
Tags: ,

Jays eye doctor appointment came and went and well, we were right.  The kid does need glasses.

To say he did a great job at the appointment is an understatement.  So in essence, I have nothing to write about.  Just as I suspected would happen.

You know what happens when you go to an ophthalmologist.  They shine lights in your eyes.  They cover one eye and ask you to read letters, then the other eye, same thing.  You prop your chin on a rest and lean your forehead against a shield and they move a machine back and forth in front of you.  He was awesome through it all.  He answered all the questions and followed all the instructions.  Luckily they were quick with the eye drops because they did burn a little so it took some serious skills to get them in the 2nd eye after he allowed them to do the first eye.  Still, he handled it like a star.

 

The doctor did a great job of explaining everything she was doing which I think helped.

 

There was one funny moment when it was time for him to choose his frames.  After the put the first one on, he took them off and said, “This one is not good.  Everything looks the same.”  We had to explain that he was just selecting a frame he liked and then they would make them special just for him.  He chose a super chic frame.  No regular frame for my stylish boy.  According to Aunty Juddles, they will go nicely with his bow ties.

 

Of course we gave him the speech about not letting any of his friends (or his brother) borrow them to try on and about being careful not to leave them on the floor blah blah blah.  I think he’ll be fine.

 

So that’s it.  I got nothing else.  Happy Friday Eve.

 

On Niceness & Socializing & Inclusion March 21, 2017

Filed under: Uncategorized — the jay train @ 2:03 pm

First things first – Kids are funny and it’s hard not to laugh at the things they do.

Jay participated in a karate workshop his school hosted.  At the end of it, there was a graduation of sorts where the kids demonstrated what they had learned during the program.  They blocked and punched and kicked and did endurance exercises while us parents watched and filmed in admiration.

One little kindergartener spent the entire time dabbing.  I don’t know what the point of dabbing is, but it was pretty funny watching this pint-sized girl dab over and over and over and then look at her parents each time to see if they were laughing with her.

 

Second and more importantly, Jay is a nice kid.  He can be moody and he struggles to contain his frustration when it’s Ace’s turn to use the laptop but he really is a sweetheart.  This was on full display at the karate graduation.

 

There were times the sensei asked for volunteers to demonstrate skills that he had taught them.

At one point a little girl was supposed to kick a plastic sheet that her partner was holding and she missed.  All the other kids began laughing.  Not my Jay.  He encouraged her by saying “That’s ok.  You can do it.  Try again.”

Another time a little boy was showing us his horse stance (or whatever they called it) and Jay made sure to tell him he was doing a “great job.”

When the sensei needed a volunteer to show how to do push ups, I was pleasantly surprised to see Jays hand shoot up enthusiastically.  The sensei let everyone know that they would all do push ups until Jay got tired.  After a few he asked “Are you tired yet?”  Jay said “Nope.”  Everyone groaned but kept pushing up.  Sensei asked again, “Are you tired yet?”  Jay said yes.  So everyone flopped to the floor; only for Jay to recant, saying: “Just kidding” and everyone groaned but laughed.  It was a simple thing … But my God … this child.

This child had a one-on-one speech therapist quit on him several years earlier due to his uncontrollable behaviours and this child had been kicked out of a couple different social skills groups because he just would not/could not keep up with the group and this child was expelled from a summer program (for special needs kids) because the staff could not manage him.  This childs parents were told when he was 2 years old to expect and plan for a painful life – Full of medications to “zombie-fy” him and institutional living.

We never for a second thought that was the way.  We never for a second accepted that sentence or gave up on pushing him and trying new things and new places.  Thank the heavens we found teachers who also never gave up and who also pushed him and together we got to where we are now.  We got to where he makes jokes with peers and where he sits and follows teacher instructions and where he shakes hands to introduce himself and where he didn’t lose his shit when he was admonished in front of the entire class for coming there with chewing gum.

 

These things don’t happen by accident.  These things happen when children, like my son, who struggle with social skills and communication are given the chance to engage with typically developing peers.  It happens when children, like my son, are afforded the opportunity to play with and learn with a variety of other children.  It happens when you find a team of people who see the full potential of your child and who give you the tools you need to make the best of things; and who damn sure don’t quit on you when it gets hard.  It happens when you know your child is worth celebrating and you know he has a lot to offer the world and you only allow people into his life who also see the sparkle behind his eyes.

 

At karate, when they needed to pair up for an exercise, my son was quickly approached by another boy and asked if he wanted to be his partner.  Without making eye contact, he happily accepted and they did a great job together.  Just this morning when I dropped him off at his school, he was met by a friend who wanted to share with him that new (toy) foods had been added to their basket.  I don’t think it was random that this other student was excited to share the news with Jay.   Jay enjoys playing with fake food and it’s probably well-known among the kids.  Jay didn’t disappoint … He said “Really? That’s so cool” and the 2 of them ran off together.

 

School serves a lot of purposes and mastering academics is up there among the most important.  Time tables are to be memorized and spelling tests are to be administered but Holy Jesus, the social aspect is right up there too.  Inclusion is important.

Jay is learning how to be nice and how to take turns and how to be a supportive team-mate and how to appreciate kindness that is shown to him.

Other students are learning patience and acceptance and that just because someone may speak differently than you or act differently than you or like different things than you doesn’t mean you can’t be great friends.

 

 

 

 

*Ed Note:  I know very well that inclusion is not appropriate for all students.  I know very well that not all kids will make the kinds of advances that my son has made no matter how hard they work or how diligently the parents push or how much support the school provides.  This is just OUR story.

 

 

On Maturity March 17, 2017

Filed under: ADHD,Autism,Family,Life on the Jay train,Special Needs Kids — the jay train @ 11:09 am
Tags: , , , ,

Some kids mature faster than others – That’s not news.

If I look back honestly on my own childhood, I do believe I was a fairly easy child to raise in many ways.  I was a talker for sure, but I didn’t talk back.  I wasn’t destructive or defiant or a liar.  I was polite.  I excelled at entertaining myself through reading or playing with dolls or attempting arts and crafts projects.  I pulled good grades and kept good company.  I was dutiful as the granddaughter of a public official when we either hosted or attended official functions.

That said, I also don’t think I was particularly mature mentally.

Among the many things that Ace has inherited from me – That’s one of them.  Overall, he’s a good kid;  But, he’s not the most mature for his age.  That can be good in that he’s holding onto his innocence and we all know that it can hurt once you realize that the world is not a nice place – but it can also be frustrating as a parent when you feel like you are constantly correcting behaviours that your child should have outgrown due to natural maturing.

 

This is something that we have been working really hard at over the last couple of years … Breaking Ace out of some of his more childish (?) interests and ways of thinking or acting.  We have upped the “tough love” and we talk excessively about how he’s becoming a man and he’s not a baby anymore.  We remind him that he’ll be in middle school later this year.

 

For me, it’s one of the more difficult aspects of parenting.  I don’t want to be hard on him.  It’s not my natural tendency.  I am the soft landing.  The nurturer.  The boo boo kisser.  I also recognize much of him in my younger self so I understand how he feels – But I wish if someone had tried to help me instead of leaving me unprepared for adulthood.

 

Recently, we told him he could not do something.  He was not happy about it.

Later that evening he said the following:

“Mom, can you sit down please.  I’d like to talk to you.  I know you said no (to that thing earlier) but I don’t understand why.  I really don’t see how anything bad could come of it.  Can you please explain to me what the problem is.”

 

It was such a grown up thing for him to say and I was really proud of the way he handled it.  I sat and we talked and I got him to see it my way.  I even shared a story about something similar that I went through when I was in high school.  Me sharing my own stories like that help him to understand that we are not being hard for the sake of it and help to show him that we do understand where he’s coming from but we have some added knowledge based on life experiences that he doesn’t yet possess.

There was no attitude or raised voices or pouting or shutting down.

 

We hugged it out and I breathed in his freshly bathed scent.  It’s not easy raising a sweet little boy clad in snow man pj’s to be a strong, confident, adult man of integrity.  So often I wonder if we are getting it right.  So often I feel like I’m not the right person for the job.  Every so often, I feel like we will all be ok.

 

Where Do I Go With This? March 9, 2017

 

If you were among the first to arrive at the party, you will remember that this blog began as a way for me to release lots of negative energy.  My older posts had a much different tone to the newer ones.  I will forever be grateful for all the support I received from my readers in those early days.  I needed it like I needed air.   I needed it to keep from drowning.

I no longer feel like that wobbly legged new-born calf.  I certainly don’t have all the answers; But I have learned to swim.  And if there’s a moment when my limbs get tired or I need to collect myself, I just take a break and float; And then begin swimming again when I’m ready.

The shift in the things I write about has been astounding.  Even though it’s happened over the course of 6 VERY LONG years, it has happened at lightning speed.

 

 

It has been feeling lately as if most of the things I have to share with people have been cute little jokes that are more fit for a Facebook status than a blog post.  Such as Ace having a girlfriend and telling me that he loves her big puffy hair and her calm voice while Jay wants to be a polygamist.

 

There have been conversations between Ace and myself which led to me telling him about this blog and his desire to read my posts.  (Hmmm)

Also, Ace has apparently figured out the meaning of life.  I know right?  Super impressive.

 

There was the time that Jay was supposed to go to karate class but behaved badly and had to be removed from the group for a while before he was allowed to return.  The thing is though, even that doesn’t deserve a big story.  In the past it would have been a whole post.  Nowadays though, when he has these moments they pass fairly quickly.  He finished out the class and had a good evening and is looking forward to the next class.

 

Last night was just another Wednesday evening.  Ace was in his room building something; budding engineer that he is.  Jay was playing with his toys and the next thing we know, we were all hanging out and being silly and playing and laughing together.  Yup, just another Wednesday.

Ace went into Jays room for something and came out holding his chest dramatically and saying “That’s it.  This is the end.  It smells so bad in there.  I see the light.”  It was hilarious.

 

Jay let me know that he will not use cuss words like the S word or the F word because he’s too cool for that.   Right on kid.  I’m not that cool, although I didn’t tell him that.

 

On March 22nd, we will take Jay to his first ever eye doctor appointment.  We have a suspicion that he’s not seeing clearly.  In the old days, the appointment itself would surely have been blogging gold.  They are going to do (or attempt to do) the whole works.  Pupil dilation etc.  If he ends up needing glasses, that would have been another post.

Now, I’m not so sure.  The entire procedure may be totally unremarkable.

We will see.

 

Ultimately, while I do love writing and all this leaves my blog future feeling unsure,  it’s a good thing.  It means life is good.

 

Deen-A-Palooza March 7, 2017

 

I wrote a whole long thing giving all the details on my birthday weekend.  I had such a great time that I wanted to share it here.  As I was writing it though, I was shocked at how unexciting it all sounded.  None of the fun – And there was A LOT of fun – was making it’s way from my head to the screen and definitely none of the fullness that was in my heart fits onto a screen.

 

I think that’s because I can’t tell you all the jokes we shared.  Jokes don’t work that way.  I can’t tell you about VP or drinking poop water or introducing your girl to your cute friends; And by the way, how do you even know where my homeboy lives?   I can’t tell you about Panda Panda Panda or the frustrated George Washington buff.  I can’t tell you about the stall tactics Shaunie employed or the 4 person fake pajama party or the male nip slip.  I can’t possibly tell you about all the spilled wine and the yoga pose turned dry humping.  Seriously, I can’t.  I can’t share with you the stuck out pinkies or the Fe Fi Fo Fum or the no queso.  There’s no way the dusty law degree will be funny to you or the meme game or Indian people with Jamaican accents arguing with black Ghanian people with British accents over which one is more weird.

 

So here’s what I can do … I can tell you that my weekend was full.  It was full in the most glorious way.  My people showed up for me and I felt the love.  People came from New Jersey and Pennsylvania and North Carolina and Maryland.  They were childhood friends and college friends and work friends and friends of friends who became my friends.  We had dinner and we went to a club and we had brunch.  We had a game night and we sang karaoke and we laughed so hard that at one point I was literally rolling around on the floor.

Shaunie took me on a tour of Mount Vernon which was George Washington’s estate.  It was awesome for a history fan such as myself; especially one who is currently obsessing over all things Hamilton and the Revolutionary War.

We went indoor sky diving and to see a movie – Logan – Which is also awesome for someone, such as myself, who thinks the X-Men is the best comic book series.

We closed out the weekend with massages and then cupcakes with the kids.

I got a new bike, which I’ve been wanting and I got a stained glass ornament hand-made by the boys.  I got wine and a personalized wine goblet and nail polish and t-shirts and books and jewelry.

I loved all the gifts but none of them compare to the gift that Shaunie is to me or to the ongoing and long-lasting gift of friendship that I have received from the best people in the world.  I was (am) completely overwhelmed and full of gratitude to have these people in my life.

 

Did I mention that every bit of it, was a surprise?  Starting on Friday evening, from one minute to the next, I never knew what was coming.

 

I am sure I am leaving stuff out but hey – I’m old now so I can blame that.  🙂

 

Year One Of Hopefully Many March 3, 2017

Filed under: Uncategorized — the jay train @ 11:34 am

 

*Mush Alert*

 

On March 3, 2016 I stood at an alter, and before God, and a very small handful of people, including, a Reverent in the Episcopal (Anglican) Church and my children, I promised my lifelong love and fidelity to Shaunie.  We chose to write our own vows for our ceremony.  For posterity sake, I posted mine below.

Every moment of every day hasn’t been easy, but I can say without any doubt that she has loved us, bent over backwards for us, made us laugh, supported us, provided for us, fought for and defended us, taken us on adventures, sacrificed for us and made us better in ways that I could never have imagined or hoped for.  She jumped into the deep end of motherhood and never looked back.  She has never – not once – ever referred to the boys as her “step” children.  They are her sons.  Point, blank, period.

She reminds me to renew my car registration and buys me tissues for my ever-running nose.  She tolerates my terrible singing even when I’m singing show tunes.  She loves me in all the ways I ever wanted to be loved.  Tender and honest and selfless.  She only ever wants to see me flourish.

Her family has become my family and my friends have become her friends.

Fun fact – When she first found out that I had a blog, I had already written hundreds of posts.  Easily over 500.  But she was so interested in our history and so badly wanted to understand the children and I in the deepest way possible, she went back and read Every. Single. Post. I. Ever. Wrote.

 

Happy Anniversary baby.  I love you!  Here’s to many more years of eating Popeyes on Valentines Day, driving each other crazy with our driving, finding Netflix shows to binge watch and arguing over which one of us a particular pair of glasses belongs to.

Saying “I do” was one of the best decisions I’ve ever made and I’d do it all over again at any time.

*~*

 

 

 

I wasn’t looking for someone to share my life with, then one day, you became my coworker who quickly became my friend who turned out to be my soul mate.  You have changed my life in so many positive ways.  You earned my trust and in so doing, you made me feel safe to open up in a way I’ve never done before.  You make me feel brave.  You make me feel cared for and valuable and worthy.  With you it’s ok for me to show my vulnerable side and that’s no small thing.  I feel sheltered in your love.

I have kept nothing from you and have shared with you my flawed, imperfect self and you accept me just as I am.

I want you to know that I will never ask you to be anything other than your authentic self even as we both grow and evolve.

Simply put, I adore you.  You are strong and determined.  You are a woman of action; not a procrastinator like me.  You show up for the ones you love.  You are considerate and hard working.  Just by being who you are, you inspire me to be the best version of myself.

There’s no doubt that at times, I will frustrate and challenge you but you’ll never have to question my devotion.  I will support and encourage you always and when you’ve had a rough day, l will make you tea and rub your back.
I will love you when you’re hungry and I’ll think you’re cute even when you have a bad hair day.  I promise to try and keep the bathroom rugs dry.  I promise to try and never let the car run out of gas and I promise to not over do it with the seasonal decorations.  I promise to have fun with you and to communicate with you openly and honestly.  I promise to honor, respect and cherish you.  Above all, I promise to love you as hard as I can for the rest of my life.
With you the good times are better and the hard times are more bearable.  I marry you today with my eyes wide open.  Ours is not an easy, fairy tale romance.  Ours is a thick and thin, trials and gains, no holes barred, real life romance.  You have helped me to let go of the past and now I fully embrace what lies ahead. Thank you for making me laugh when I don’t even feel like smiling and thank you for not being afraid to try new things or go on new adventures with me.  Thank you for understanding when I need that extra push or just a hug.

Thank you for embracing my boys and all that comes with being a step parent.  I appreciate all the selfless and thoughtful things you do for our blended family.

 

I, take you now, in the presence of God and our children and everyone here, to be my wife; my forever partner.   I will be there through the pressures of the present and the uncertainties of the future.  I will be there to share your laughter and your tears.  I will be there through all of lifes ups, downs and unexpected turns.  Forsaking all others, richer or poorer, sickness and health.  All of it.
You are my best friend and I am in love with you proudly and unapologetically.

From this day forward we are a family.  Always!

 

Team Growth February 27, 2017

On Saturday evening we were trying to decide whether to go to the 9 am Church service the next day or the 11 am one.  We’re not really the best at being morning people so 11am would suit us better in terms of waking up and getting ready but if we go at 9 am then the kids can go to Sunday school whereas if we go to 11am they have to sit with us in the sanctuary.

Decisions Decisions.

For me it’s a no-brainer and the extra sleep wins.  I voted for 11am because as I put it “The kids will be fine.  They did a good job last time.”

Shaunie had a different take.  According to her I frame everything around how much better they are now than they used to be.  So basically, even though we sit in the back just in case we need to leave during the service and we bring snacks and we threaten to take away electronics if they don’t behave and we spend about half of the time shhh’ing them, I count it as a win because we make it through without any yelling or crying – which was not always the case.

She feels like they still have a little way to go and are better off hanging out with the  other kids in a different room.

 

We ended up going to the 11am service.  We made sure the boys were well fed before we left home.  We gave the behavior speech.  We let them bring toys.  I packed snacks in my bag.  We sat in the back.

 

For a long time I avoided going to Church altogether with the kids because it was just too much to handle.  Due to their disorders, (ADHD and Autism if you are new here), I could NOT leave them in Sunday School while I sat quietly in a different room.  I also could NOT bring them to the main service with me because they could NOT sit still or be quiet.

Making it through a Church service has not been an easy road for us.  We’ve had to leave after only being there for 10 minutes.  I have been known to leave Church services in tears.  We’ve been given plenty of mean looks.  I’ve had my kids crawl under pews and between peoples legs.  They’ve dipped their hands into the wine cup during communion.  They’ve gotten into arguments with other kids in the Sunday school room.

Yesterday, Ace only dropped one Lego piece which had to be retrieved from the floor two pews in front of us.  Jay excitedly waved his $1 in the air that he puts in the offering plate but so what?  Only one time did Ace ask, “How much longer?”  Jay ate Oreos.  They both shook hands during the greeting of the peace and before you know it, we were on our way home.

 

I think everyone would agree that it was a successful outing.

These things don’t happen by accident.  They happen because you keep pushing yourself.  You keep trying.  You keep growing and getting better – Sometimes very slowly.  You fail a few times (or most of the time) but you go back anyway.

 

There’s debate in school administration over whether to rate students based on their growth in an area or their proficiency on the topics.  I suppose it’s safe to say I am #TeamGrowth.

Proficiency, of course, is the goal, but we’ve got to recognize and celebrate every little bit of growth and use that growth as motivation to keep pushing us forward.