life on the "j" train

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

When The Kids Are Away April 25, 2017

Miss me?  I’d love to say I’ve been quiet because the kids were away and when the kids are away we party.  Hard!  I want to say there was no time to blog because we were having too much fun.  The truth is that, things are kinda regular and quiet when they are away.  Nobody wants to hear about (and I don’t want to write about) us going to work, coming home and eating dinner and going to bed.

 

We tried to live it up a little bit.

On Monday, we went for donuts after dinner.  Yup.  We did.  We even took pictures to mark the grand event.  Donuts on a weekday – Even though it would be dark soon.  Boom!

On Tuesday we went to a local brewery and tasted several beers.  We are not beer drinkers.  And we learned we are definitely not stout drinkers.  We did learn about hoppiness and roastiness and that beer can smell like chocolate; so there’s that.

On Wednesday we really went all out.  We … wait for it … Went to work, came home, had dinner and went to bed.

On Thursday we planned to go to a movie but didn’t make it.  Instead we had Chick Fil A and walked around in Sears.  I got a winter jacket for only $5 and we bought 2 pairs of kids pants for $0.86.

 

We made and followed through with the biggest plan on Friday.  We met up with a couple of friends and did a sip and paint.  I always love an opportunity to spend time with friends and to laugh.  And if alcohol is involved that’s ok too 🙂

 

Our boys are back now and note-worthy things are already happening.

Jay ate lasagna – and liked it.

Ace had chicken soup – and liked it.

Both those things are major.

 

We made a vacation plan which I am really looking forward to.  Ace is busy readying his mind for middle school.  He’s concerned about being the “3rd smallest 6th grader” and is wondering when he’ll have a growth spurt.  He’s also thinking about which clubs he is interested in.  So far, the track team is still on the table but the step team is a heck no.  The Lego club is an oh heck yes!  Jay is lobbying for a pair of prescription sunglasses and learning how to confront social challenges head on.

Here’s a little more info on that … Apparently he thought he was unfairly treated by a staff member at his school so he was mad and decided he was not going to speak to that person ever again.  We had a conversation about that not being the best way to handle the situation.  I told him that maybe there was mis-communication and that if he spoke to the staff member and explained how he felt, the 2 of them would be able to talk it out and come to an understanding.  That was hard for him to accept.  With some prodding though, he (VERY reluctantly) told her how he felt and they were able to fix their issues.  So big!!!

 

So there you have it.  We’re doing alright.  It’s been raining for several days which is yuck and this will be a busy week with work stuff and school meetings and such.  I squeezed in a knitting class which meant I didn’t get home until 8:30 but it’s all good.  I feel pretty confident in my abilities to make a blanket now.

 

I’m keeping up with current events and a lot of it makes me mad and/or sad and/or angry.  I’m anticipating the release of Hulu’s The Handmaids Tale since I need a new series to watch.  We’re putting summer camp things in place which includes a 3 night sleep away camp which will be a first for both boys.  Don’t ask me how I feel about it.  *Hint* – I’m nervous.  I’m plotting on the dinner that’s currently cooking in our crock pot all while dreaming of a day when just thinking about eating right and exercising will produce the results I want.

 

 

Telling Our Stories April 18, 2017

 

“You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.” ― Anne Lamott

 

 

I remember the very first time I ever read the above quote.  Even though the book was written in 1994, I hadn’t heard of it till 2012.  I had just written a blog post in which I said some things that I wondered if I should have.  I had hit “publish” and then spent the next few days thinking about various people who may see it and wondering if it was my place to say some of the things I had said.  I deleted one line of that post.  Then I came across Anne Lamotts quote and I thought, “damn right” so I went back and re-wrote the line.  It was the truth.  The person had done what I said they had done and it had affected me.  Why should I protect them?

 

I recently had a conversation with someone, I’ll call him Keith, who was struggling to understand why he was receiving the treatment he was receiving from someone else.  I knew why – and I share that persons views.  Not the views towards Keith directly but, I share the views.  I’ll leave it at that.

If I were to enlighten Keith, as he wanted me to, it would mean shedding light on some unsavory things about someone he loves very much.

It is a tough position to be in.

 

I have said some unflattering things but I don’t think I have ever said anything defamatory about anyone on my blog.  I have been honest about the relationships in my life.  With my father there is none at all.  Has been none for 10 years.  Before there was none, it was strained.  With my mother, at this moment, it is luke warm. With my grandfather it was awesome except for the times it most definitely was not.  With one sister it is good, with another it has soured to the point of being non-existent and with yet 2 more sisters, we were doomed to be strangers from pretty early on.

In a lot of ways, my family life as you can see, is not the best.

 

I love to write about our lives.  It’s medicinal almost (to me) and I think it will be a gift to my boys when they are older.  I put a lot out onto the internet.  Even so, there is so much that I keep close to my chest.  Sometimes it hurts and I feel like if I were able to just say it, I’d feel better.  But would I really?  The only thing that would heal much of what hurts me is a change in the other persons behavior and one thing I have learned is that you cannot make people be who you want them to be.

Also, are any of us completely innocent of causing pain to someone else?  Have we always done what we were supposed to do for the people we say we love?  Would we want all the people whose hearts we have broken or who we’ve gossiped about or who we ignored in a time of need to come out of the woodworks and share with the world all the ways in which we could have been better?  I don’t.

 

On one hand I whole heartedly agree with Anne.  (And if someone else wants to write their story and include all the ways in which I failed them then I would deserve it.)  On the other hand, I don’t want to be a jerk.  I try really hard to balance telling my stories – because I do think I am entitled to them – with being as respectful as I can with other peoples stories – because those are not mine to tell.

 

Also, as I have come to realize, on more than one front, keeping some truths hidden isn’t about protecting the “wrongdoer”, it’s about protecting the innocent who love them – even if it is a difficult pill to swallow or the hidden facts make other people get credit they do not deserve.

 

The best-laid plans of mice and men often go awry April 17, 2017

Filed under: ADHD,Autism,Family,Life on the Jay train,Marriage,Special Needs Kids — the jay train @ 9:33 am
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We had such a great day on Saturday.  Ace and I went for a beautiful bike ride on a path that runs along our local river while Jay continued to practice his 2 wheel bicycle riding skills.  The four of us hung out at the rivers edge and watched as people fished.  The fish were biting that day.  We sat outside and had lunch at a lovely Italian restaurant.  The weather was simply perfect.  Back at home, the kids hung out and played with electronics while the adults took a nap.  As I told a lady I met on the bike path, it’s a lot easier to ride uphill when you are 10 years old.  Following naps we got some dinner and then went for ice-cream and Italian ices.  It was just a very nice, well-rounded, happy day.

Piggy backing on Saturdays good vibes we were so full of optimism that we decided that on the following day, after Easter service at Church and egg hunt, we would take some family pictures before going home to open Easter baskets.  We made sure to let the kids in on the plan. They were both down for the cause.

 

On Sunday we all got dressed up nice and fancy.  Church was great!  The kids did an amazing job.  Immediately after the service there was an egg hunt and literally ONE minute into the hunt, Jay bumped his head on a sign and it was all downhill from there.

 

 

He was in a sour mood and nothing we said could fix it.  There would be no family pictures.

Ace, bless his heart, really tried to salvage the day and said “I’ll still take pictures with you guys if you want.”  We did.  We got really cute pictures of Ace by himself, in all his bow tie glory.  We got pictures of him and I as well as him and Shaunie.  Then a stranger got one of the 3 of us.

All this while Jay sat in the car sulking.

 

Once we were done taking pictures we went home where Ace opened his Easter basket and was thrilled with his goodies.  Mini transformer toys, a couple of comic books and of course candy.

Jay went to his bed and his basket is still sitting on our living room floor.

 

As was planned, CC and Emma came to pick the kids up in the afternoon since they are on spring break this week.  They will spend the entire week in New Jersey.  This is a good thing because it’s important that they spend time with their dad and his family.  They will get to see Nanas.  It’s also important that Shaunie and I get a little break.

I was really disappointed with the direction the day took – But these things happen.

The good news is that when I checked in with CC, he confirmed that Jays mood had improved and Ace was his typical happy self.

Shaunie and I watched a comedy and then went out to dinner at a place that doesn’t serve chicken nuggets and waffle fries.

Waitress:  Would you like a 5 oz or an 8 oz glass of sangria?

Me:  The big one.  Give me the big one.  Thanks!

 

Jays Easter basket will be here when he gets back, still stocked with all his favourite things and we can always try again for the pictures on another day.  Our little town has lots of picturesque places and now that the leaves are back on the trees, it’s even more beautiful.

 

At the end of the day I am glad we had Saturday and I am glad that everyone has cheered up and I did love all the greetings shared among family and friends from all over the world.  I got new pictures of my niece who is the cutest niece that there ever was.

I hope everyone had a happy Easter and that all your plans played out just the way you hoped.

 

High and Low – Ugh! April 12, 2017

The thing I didn’t say in my last post that I wanted to address but didn’t because it didn’t really fit in with the post even though it was inspired by the book plus the post was getting long anyway is this …

 

People love to put autistic people into categories.  Specifically, high or low functioning.  It’s a totally irresponsible thing to do.  It serves no purpose.  And most importantly, I think, is that it denies people their full human-ness.

In the book I reviewed yesterday, Christopher took advanced (*A level maths) at the age of 15 and Aced the test.  He was most surely headed for college to study math and science.  He had a remarkable memory and was able to understand the concept of money and chores and taking care of a pet.  He was verbal.  His parents were comfortable leaving him home alone and he wrote a novel.  He was able to develop relationships with people.  Sounds pretty high functioning to me.

Christopher also could not see past one lie his father had told him and recognize that that did not make his father a bad or dangerous person.  There was no reasoning with Christopher.  He wet himself sometimes for various reasons.  He had a crippling dislike for certain colours and he did not react appropriately to strangers who tried to speak to him or who touched him.  He went to a special needs school.  He did not have any friends and his sensory challenges restricted his life in a major way.  He was prone to wandering off.  Sounds kinda low functioning to me.

 

Jay is not a star student.  But he’s a really great artist.  He doesn’t have any sensory issues which is an astounding thing to say about an autistic person.  He’s flexible with his schedule and he enjoys going on vacation to new places.  He doesn’t understand money AT ALL – so far.  He does not respect other people’s time so there’s no use in trying to rush him.  He is not self-conscious but wants to be a part of whatever activity other kids are involved in.   He’s a sore loser.  He is in a general education class in a general education school with no aide and there are no concerns about him wandering off or engaging in self injurious behaviours.  He has friends.  He cannot ride a bike, swing himself or tie his shoe laces.  He is verbal and reads for fun and appears to understand stories but scores poorly on reading comprehension tests.  He can make his own grilled cheese sandwiches.

Is Jay high or low functioning?  The answer is … Yes.

 

The truth is that it’s not a fair question.  It’s too arbitrary and does a dis-service to everyone.

We would never use that kind of binary qualification to identity non-autistic people.  We wouldn’t say that a brain surgeon is high functioning but a plumber is low functioning.  Is an illiterate farmer high functioning but someone who writes computer codes low functioning, because, we all need to eat?  Stevie Wonder can’t drive, but he’s functioning at a higher musical level than anyone I know in real life.  Everyone has a different skill set or ability.  All are valid and necessary.

Someone who is non-verbal could very well have a brilliant academic mind.  Yet, they might spend their entire life with people calling them low functioning or assuming they are stupid.  How frustrating would that be?  How belittling and condescending.

Someone else who has no outward signs of a disability and who is able to function well in a controlled environment – who could “pass” as high functioning – may have no sense of danger and might frequently put themselves in situations they shouldn’t and therefore cannot be left unattended – ever.

 

I think we need to get rid of the terms high or low functioning.  I have friends who function at a much higher level than I do in a kitchen or in a garden or on a dance floor while I outshine them in a swimming pool or with an excel spreadsheet or with a sewing machine.

 

I know it’s an uphill battle trying to change peoples thinking.  I don’t know how to do it other than spreading the word.  Instead of taking one part of who someone is or what they can demonstrate and barricading them into a box, we need to look for peoples strengths (everyone has them) and nurture those and then we should also look for their challenges (everyone has them) and assist them with those.

 

 

 

I realize this is not a new concept; I just felt compelled to talk about it today.   Plus, I get to use some memes which said in less than 30 words combined, what I spent 1000 words saying.

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*A Levels are exams taken after graduating high school but before attending college in the United Kingdom and former British colonies.  It requires studying a subject over a 2 year period and sitting an exam at the end of each year.  Most students only study 3 or 4 subjects due to the intense nature of the work.  Most students are between the ages of 16 and 18 when they sit A levels.

 

The Curious Incident of the Dog in the Night-time April 11, 2017

 

 

OK, so my friend (who is more like a sister really), asked me a couple of weeks ago if I’d read a book called The Curious Incident of the Dog in the Night-time, written by Mark Haddon.  I had not.  I had not even heard of it at that time.  The story is told in the first person by Christopher, who knows all the countries of the world and their capitals, as well as every prime number up to 7,057.  He relates well to animals but has no understanding of human emotions.  He cannot stand to be touched.  He has a superbly logical brain and takes things very literally.  Christopher as you already probably imagined is autistic.  In the book he is fifteen.

 

My sister-friend implored me to read it and let her know my thoughts.  This is someone who has spent a significant amount of time with my Jay.  She’s a high school teacher who, while not a special education teacher, has had a large number of special needs kids work their way through her classroom.  She is not ignorant of autism in its varying forms; yet she said this book gave her some new insight – when it wasn’t making her laugh, or feel sad.

 

 

I saw a lot of Jay in Christopher, but at the same time, I did not.  Christopher was able to maneuver himself through some sticky situations in ways that I cannot at this moment see Jay being able to do at fifteen.  Christopher definitely has an advanced math brain that Jay does not have.  However, Jay is way more flexible than Christopher in terms of his ability to enjoy different environments and adjust to a thrown off routine.  Unlike Christopher, Jay has a decent understanding of our language nuances (sarcasm, hyperbole, metaphors, jokes etc).  Jay is not touch averse and where Christopher seemed to not “feel” any emotions, Jay definitely can see things from other people’s perspective and he understands the feeling of love as something more than just having someone there to meet your needs.  Jay enjoys other people’s company and loves to have fun with people.  The pickiness with the food is something they do share.

 

There was one page in particular though that I found myself taking out a hi-liter and marking some passages because I think this is how Jays brain works and it was nice to see it explained this way.  It made perfect sense to me.

 

My memory is like a film.  That is why I am really good at remembering things, like the conversations I have written down in this book, and what people were wearing, and what they smelled like, because my memory has a smelltrack which is like a soundtrack.

 

And this is how I recognize someone if I don’t know who they are.  I see what they are wearing, or if they have a walking stick, or funny hair, or a certain type of glasses, or they have a particular way of moving their arms, and I do a Search through my memories to see if I have met them before.

And this is also how I know how to act in difficult situations when I don’t know what to do.

For example, if people say things which don’t make sense like “See you later, alligator,” or “You’ll catch your death in that,” I do a Search and see if I have ever heard someone say this before.

And if someone is lying on the floor at school, I do a Search through my memory to find a picture of someone having an epileptic fit and then I compare the picture with what is happening in front of me so I ca decide whether they are just lying down and playing a game, or having a sleep, or whether they are having an epileptic fit.  And if they are having an epileptic fit, I move any furniture out of the way to stop them from banging their head and I take my jumper off and I put it underneath their head and I do and find a teacher.

 

Overall, I enjoyed the story very much and not because it was trying to educate people on autism.  It was just a well written fiction novel.  I give it a thumbs up.

If you are a reader, go ahead and give it a try – Then let me know what you thought of it.    It’s Marks first novel and I was able to download it for free through a simple google search.  The language is simple and I knocked it out in about 3 days.

 

 

 

Cause & Effect April 7, 2017

Picture this …

Jay on his scooter, Ace on his bike, slick roads from recent rain – and the next thing you know, there is blood everywhere.  It was coming from Jays face and from Ace’s knee.

 

Now, when you are the only parent home and 2 bleeding children come running into the house and they are both screaming about the pain they are in, there is a certain amount of panic that immediately hits you.  Who do you tend to first?

 

After a quick assessment I determined that Jay needed more intense service but Ace’s injury would be more easily tempered.  So, I slapped a band aid on Ace to cover the bleeding.  (I would clean it later).  Then I turned my attention to Jay.  The poor thing had what looked like a bad gash on his upper lip and some minor ones on his chin.  I couldn’t tell if the blood in his mouth was as a result of the lip or if he had done damage to his gums as well.

 

After some careful washing and rinsing, I determined that all the blood was coming from his rapidly swelling lip.  I managed to get him cleaned up and I put some antibiotic cream on it.  It wasn’t as bad as it had initially looked.

 

But none of that is what I want to talk about.  I want to talk about how amazing Jay was throughout this ordeal.  He was clearly in a lot of pain but he tried so hard to hold it together.  When I asked him to wait one second so I could slap the bandaid on Ace, he did.  When I asked him not to touch his face with his sleeve, he moved his hand away.  When I asked him to rinse his mouth with water, he did, even though he was scared that it would cause more pain.  When I let him know that I was going to have to touch it to clean it and apply ointment, he nodded his consent.

 

When it was over, he said:  “Mom, do you know what that was?  That was cause and effect.  The cause was that Ace and I crashed and the effect was that I got bleed.”

I let him know that he was absolutely right and that I was very proud of him for being so strong.

Then we curled up in bed and cuddled for a bit.  After a while I asked him how he was feeling and he said it was getting a little less hurt but that he was ok.  He even smiled for a picture.

 

Then this morning, my sweet boy, who the internet will tell you lacks empathy due to his autism, asked Ace how he was feeling even though he, Jay, had gotten the worse injury.  Ace assured him he was fine and in turn asked Jay how his lip was.

 

Happy Friday everyone … May you all have a great, no bleeding, no lip swelling day.

 

 

Things On The Brain April 4, 2017

Filed under: ADHD,Autism,Family,Life on the Jay train,Special Needs Kids — the jay train @ 4:22 pm
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It is VERY HARD work to bend over, hold onto a seat and run behind a bicycle that is being “ridden” by a 60 lb boy.  My back is still stiff and I’m in pain from this past weekends 2 wheeler lessons.  I know he will get it when he’s ready, just as with everything else and I don’t usually force things – Potty training and shoe-lace tying come to mind – But right about now, I AM READY for him to catch bike riding.

 

Gynecological visits are different after 40.  The doctor asked questions and brought up topics that we’d never discussed before.  That’s all I’ll say about that.  Moving right along.

 

Fresh squeezed tangerine juice from Wegmans is awesome!  Even if a small bottle costs $5.  The green vegetable juice they have is just as bad as all green juices are that people try to convince you taste good even though everyone knows they don’t really.

Oh, and the cream filled coffee cake muffin from Wawa?  Also awesome!  And can I get a hip hip hooray for all the fruit that’s tasting sweet again now that we are out of winter.

 

I no longer suffer from Spring allergies apparently.  Woo hoo!!!

 

Despite my assumptions that my emotions around it would be temporary  – I get a pit in my stomach every single time I drive past the middle school sign that announces the date for incoming middle schoolers orientation.

 

I’m not really into the whole lighting it up blue thing but I know that friends and family who do it/promote it, are only doing so to show support so I appreciate that very much.  At Jays school the kids wore blue t-shirts and let off blue balloons but when I asked him why they did that he had no idea.  I kinda feel like if they are going to have an acknowledgment of the day and are going to include the kids, there should be some education around the ‘why’ of it.

 

It has taken me a lot of time and money to find products that I like for my hair.  I have thrown away LOTS of mostly full bottles of stuff that promised and then failed to moisturize and tame my curls.  I finally found a conditioner I loved and it was super affordable … NOW, it has been discontinued so I am back on the hunt.  Ugh!

 

My phone is dying and I am in no mood to replace it.  The latest thing it does?  Shuts off once it gets to 40% power.  No Bueno.

 

Knitting a blanket takes a LONG time.  I have one that my Grand Aunt made for me years ago and while I always loved and cherished it, I now have a whole new appreciation for the effort it took her to make it.  Oh, yeah … I have started learning how to knit.  Send yarn 🙂

 

Often I write about what is happening in our lives just to have a forever record of it.  Other times (like today), I write about random things to distract myself from other things that are pressing on my brain.  Money Stuff, Travel Stuff, Health Stuff, Not Enough Time Stuff, Job Stuff.  All the stuff we wish would just go smoothly and that we wish we never had to worry about so we could focus on more fun things – But all the stuff that actually keeps us up at night and that we wish we could share with people so that the load would be lighter.  Alas!  Instead of hearing about why I tossed and turned last night due to an overactive, worried, brain, you now know what kind of juice I like and that knitting is an awesome way to be productive while your son is reading you a story about Transformers and even though you don’t hear one word he says, he thinks you are listening which makes him happy so win-win.