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
Tags: , , , ,

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.

main-qimg-b98d152beefb60cbd0cc74ab21e30e0e-ceveryone-is-a-genius-but-if-you-judge-a-fish-lg

 

 

 

 

*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.

 

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
Tags: ,

 

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.

 

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.