life on the "j" train

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

According to Ace June 21, 2017

If all goes well, courtesy of their father and step-mother, the boys will be the big brothers to twin sisters early in the fall.  The other day, Ace was talking about it and said “I hope the twins don’t get autism.”

I understood that he probably had a good reason for what he said but I didn’t like that he said it in front of Jay and explained to him that we never want Jay to feel as though something is wrong with him or that we don’t love him for exactly who he is.

It gave me the idea though that I wanted to interview Ace.  I wanted to give him a chance to talk without feeling the need to sugar coat or censor anything.  Our interview is posted below (with his permission) as well as a couple of notes by me.  His answers are in bold and my notes are in small print.   (If the formatting acts right.  It’s looking weird on my screen.)  Also, I selected the punctuation to try and reflect the way he spoke as accurately as possible.

 

 

What’s your name and how old are you?

*Ace.  I’m 10 years old.

 

What’s your brothers name and how old is he?

Jay and he’s 9.

 

What kind of things do you do for fun?

*smiling*

I’ve never been an interviewer before. 

 

Interviewee.  Remember there are no wrong or right answers.  I want you to be completely honest.  OK?  So, now, what kind of things do you do for fun?

 Sometimes I watch videos or play video games.  I also like to build Legos and on occasion, I read for fun. 

(I love that he said “on occasion”.  It sounded so grown up. )

 

What kind of things does your brother do for fun?

He likes to watch videos.  Right now, mostly Garfield episodes and then he makes them in book form.  He also plays Roblox.

 

What do you guys enjoy doing together?

*Long pause*

We play with Legos or other toys.  Like animal toys.  And we act out our own stories.

 

What have you taught your brother?

That’s a hard one.  I can’t really think of anything.  I did help him to get better at speaking.  Like, I correct his language when he says things the wrong way.

 

What has your brother taught you?

He tried to help me to get better at drawing but I’m just horrible.

 

What kinds of things are hard to do with your brother and why do you think they are hard?

It’s hard for him to speak properly and to not get angry over silly things.  It’s because he’s autistic and his brain has a hard time knowing what to get angry about and knowing how to focus on what to say and how to say it correctly.

 

What can you tell me about autism?

I know kids with autism are really smart but they have problems showing it.  He’ll get better when he’s older.  He’ll still have it but he’ll know how to control it.

 

Can you think of a time you felt really proud of your brother?

Yes actually!  Whenever he tries new foods and when he completed his first book that he wrote I was really impressed.  It was really good.

Also, when other kids compliment him and his drawing I feel really proud of him.

 

Does your brother ever embarrass or frustrate you? If yes, how do you handle it?

No.  Well … kind of, sometimes.  When he gets angry and other kids talk about him it’s kind of embarrassing.  I don’t say anything.  I try to ignore it.  Now, it’s not so bad though and he gets over it really quick. 

 

Is there anything your family hasn’t been able to do or it’s been harder because of your brother?

I can’t remember where we were going but he got angry and started making the trip miserable so we turned around and didn’t go.  Also, sometimes we leave places early because he’s getting mad and making it miserable for everyone.

 

Do you feel like you get less attention than your brother?

No.  I feel like we get equal amount.

 

Do you feel like you each get enough individual attention from your parents?

Yes.  You do a good job.  Don’t change a thing.

(That was nice to hear because it’s one of the things I have long worried about.)

 

Do you ever talk to your friends about having a brother with autism?

Yes.  No mean things.  But like when we are at camp and other kids talk about how it’s not fair that he gets better food than us so I tell them that he has a doctors note and I try to explain to them and defend him.  Or if he’s throwing a tantrum and kids say something I tell them he’s autistic.

 

Do you have any friends that also have a brother or sister with autism?

No.  One time after I was talking about Jay, one kid told me that I would get along well with his sister but I don’t know why he said that. 

 

What can parents do to help siblings understand autism?

I think parents should be open and they should talk about things and explain why things are happening and what to do about it.  Like in case you can help.  Depending on the sibling I think they don’t mind helping. 

 

How can parents encourage more positive interaction between their children?

I don’t know.  I think we have a positive relationship.

 

How can parents deal with resentment and competition from siblings?  Do you understand that question?

Yes, I understand but I don’t know.  I don’t feel any of that.

 

If you put yourself in your brother’s shoes, what do you think he would say about you?

That’s a hard one.  I think he would understand how I feel and he would try to help me as well.  He would say I’m a good brother even though I am only nice sometimes. 

 

Do you worry about what will happen to your brother when you guys get older?

No.  Not really.  I believe in him.

(I LOVED the words “I believe in him”). 

 

Do you think he will become your responsibility and you will have to take care of him when he’s older?

No.  I think he will get a job and be able to live in his own house.

 

What’s the best thing about having Jay as a brother?

*LONG pause*

I’m not saying there’s no best thing. 

*Smiling/Giggling*

He is easy to tease and to have fun with.  Like, I can show him what to do and he will do it.

 

What’s the hardest thing about having Jay as a brother?

Dealing with his anger issues.  For sure.

 

What are the best and worst things about having you as a brother?

Having a brother who respects him.  But having a brother who bosses him around.  Like, I will tell him “take your feet off the chair” and like that.  I talk to him like he’s only 5 years old and I will do the counting thing like “One, two … “ when he’s not doing what he’s supposed to do.   

 

Is there anything else you’d like to say that I haven’t asked you?

You only asked me about autism.  I want to say that having ADHD is hard.  I get distracted easily and sometimes I have a hard time falling asleep and I fall asleep late but then I am tired the next day. 

 

Is there anything else we can do to help you that we are not already doing?

No.  I feel like you know it’s hard and you understand what it feels like for me.  We have a lot of fun and even when you are hard on me I understand why even if I don’t like it.

 

Anything else you’d like to say?  Would it be ok if I interviewed you again some other time?  Maybe in another year or so?

Oh yes!!!  Maybe you can interview me and ask me what it’s like to have twin sisters.

 

*Both of us laughing*

Sounds like a plan.  Thank you for doing this.

 

Guilty June 9, 2017

The working mummy guilt is real!

No matter how much you do … There’s stuff you can’t do and it eats you up.

 

On the weekends we try to spend time with the kids and plan fun activities for them.  Last weekend alone they got to zip-line and rock wall climb and do a rope adventure course.  They saw a movie and did a craft project and were treated to donuts.  They loved it.

 

In May, we took a week long trip to Jamaica – And it was awesome – And I’m sure they will have happy memories of it for a long time.

 

But that trip meant taking 6 days off work; which means I won’t be able to take another day off for a long time.  That’s where most of my guilt comes from.  The stuff I miss because of work.  Ace had his field day (fun day) at school and neither of us made it.  We don’t chaperone field trips and we don’t drop by to read stories.  I’ve never done a “breakfast with mom” and I even missed the awards ceremony when Jay got a certificate for being a good artist.

I can’t take days off for all that goodness because I need to save them for when someone is sick.  I need to make sure I leave time for the very most important events such as graduation and the first day taking the bus to middle school.  We need to coordinate so that when there is no school due to snow or election day, one of us has the time available to take off.

 

Not being an active participant in school activities also means I haven’t developed any relationships with the other parents.  That in and of itself doesn’t bother me but it does affect my boys … Ace and the rest of the graduates have the opportunity to go to a water park next week but each kid needs to have an assigned chaperone – Even if it’s someone who is there watching their own child as well.  Neither Shaunie nor I can make it and I don’t have any “mom friends” who I can ask to take on that responsibility in my stead.  Ace will not get to go to the water park with his class.

 

I know I am lucky in a plethora of ways.

I’m not a single parent.  Today, it’s Jays turn to have field day at school and Shaunie was able to go and I’ve gotten pictures and videos and he seems very happy.

When I do take a day off work, I still get paid.

I don’t work any weekends.

I have heat in the winter and AC in the summer – Heck I even have a parking garage so I don’t have to get wet walking across a parking lot when it rains.

I have a boss who is understanding if I need to leave early to take a kid to the doctor; Or if I get to work late because a kid had to poop just as we were walking out the door.  (It helps that she’s a single parent.)

I actually like what I do.

 

My being lucky in so many ways though doesn’t diminish any of the guilt for the things I do miss.

I’m sure being a stay at home parent has its challenges.  I see the social media posts … “School is out for the summer. Send help! And wine! Lots and lots of wine!”  <- I just made that specific post up.  … Feel free to use it if you are a stay at home parent and it resonates.  I get it.  Kids can be a handful.  I get to use the bathroom at work without someone staring at me.  I can sip my coffee in the peace and quiet of my car while I listen to the radio uninterrupted.  I have adult conversations over lunch.

In a more serious scenario, I’m not forced to stay in an unhappy marriage because I can’t afford to leave.

 

But gosh darn it, if I wouldn’t prefer to be sweating in the hot ass sun, swatting away bugs, putting band aids on bruised knees, getting my toe run over by a scooter and watching a bunch of loud, not always well behaved 9 year olds run around with spray bottles and trying to toss a frizbee into a net right now.

 

That Kind Of Week June 1, 2017

Came home to see that all the pretty flowers Shaunie had planted in front of our house had died.  Or had been eaten.  They looked like they had been eaten.  Shaunie hates doing yard work so this was particularly offensive to her.  (1)

 

Had to deal with an issue at Ace’s school.  There were problems between him and another student.  I was peeved that in speaking with the principal, I had to pull quotes directly from the “Code of Conduct” guidelines (which is prominently posted on the districts website) in order for him to step in.  I suppose there are parents who attend meetings or make accusations or request action without doing their homework first.  I am not that parent.   I assure you, I know the school year is winding down and you just WANT it to be over.  I get that.  But.  I NEED my son to be safe and to feel comfortable coming to school every day.  Right down to the last day.  Thanks!  (2)

 

We have to move in a couple of months.   It’s unexpected news.  Moving is inconvenient.  And it’s expensive.  Also, it might force us to cancel our summer vacation which we were really looking forward to as it involved a plane ride to somewhere neither of us had ever been and it involved a beach.  Also worth mentioning is that it did not involve children.  (3)

 

As I was leaving home for work I noticed that Jay had gone to school without his glasses.  When I relayed that information to Shaunie she said:  “Oh yeah?  He also went to school with mis-matched socks.  It’s just that kind of day.”  (4)

 

 

Basically, what I want to know is this: Is it the weekend yet?  I’m ready.

 

 

Shaunie may not be ready though because while I’ll be relaxing by the beach, she will be single-parenting the 2 boys – One of whom has run out of ADHD medicine and cannot get in to see his doctor for a refill until Monday.

 

 

(1) The hanging basket of flowers by the front door is thriving and looks beautiful.  Also, our grass, which had seen worse days, is looking good again.

(2) I think (hope), it’s been sufficiently handled and there will be no further issues.

(3) We have good friends who have offered their services in the form of helping to pack and move items and to even provide boxes.  Re the vacation, I said, “MIGHT” affect.

(4) He doesn’t have any tests today and it’s not picture day.

 

Thoughts On Parenting May 23, 2017

While we were in Jamaica, we had the opportunity to visit a home for teenage girls.  These young women all have sad stories.  Many have been abused.  Due to inconsistent schooling, it’s not uncommon for girls to go there who are 11, 13, 15 years old , but functioning academically on a 2nd grade level.  None of it is ok.  Fortunately, at the home they are being well taken care of and many have made amazing progress, both academically and socially.  My Aunt has been volunteering at this home for a long time and as such we wanted to bring some goodies for “her girls”.

One of the things she told us was that one girl who she has taken a particular interest in was having a hard time lately because she didn’t understand why her mother didn’t even come to visit her, as is allowed.  She was so disgusted with her mother that she didn’t want to use her last name anymore.  My heart broke for her.

As someone who was raised by her Grandparents I have a small understanding of what this young girl is feeling.  I had a great life.  I’ve said it at least 100 times that I could not have asked for a better childhood.  There was nothing more my Grandma and Grandad could have done.  Yet, there was still, that part of me that wished if I was being raised by my parents and not my Grands.

 

I used to make excuses for other people’s crap parenting, but once I had my own children, I was no longer able to do so.  I couldn’t look my baby in the face and rationalize a way out of his life.

I have no interest in anyone who puts a spouse above their child.  No acceptance or understanding for  parents who treat one child with TLC and another child with disdain.  Don’t even get me started on anyone who stays in an abusive relationship that their child then has to witness or  worse, get drawn into.  There’s no tolerance for anyone who sees their child hurting or in need of help and stands idly by.  I don’t get, on any level,  parents who do not want to play an active role in their childrens lives and by extension their grandchildrens lives.

I’ve heard all the “reasons” why someone might not be the kind of parent they should be.

They’re too busy.

They don’t know better because they themselves had a bad parent.

The child stopped reaching out or the child did something to anger the parent.

They are doing the best they c an and loving the best way they can.

One kid needs them more than another.

There may be some truth to some of those – But they still don’t carry much weight with me.

 

The minute you made that baby, you had one job.  One.  To love and be there for your child no matter what and in whatever way is necessary.

It doesn’t matter what your expectations were or what your financial situation is or how big your childs support system outside of you is.

In addition, the moment you chose to marry someone who had children you made the decision to swallow your pride and treat their child as your own and do whatever it takes to love and support that child.

 

Being a stand up parent isn’t glamorous.  It’s not about the days when you dress up and take professional family pictures.  It isn’t about the funny things you get to post on Facebook.  It isn’t showing up on graduation day when you haven’t shown up to one parent teacher meeting.  It isn’t buying Christmas presents or spending big for a fancy new drone.   It’s about the throw up you cleaned and the nights you didn’t sleep and the days when you were too tired to say yes but said yes anyway.  It’s about making sure that any new person you introduce into your childs life is going to love them and be a positive influence.  It’s about calling just to say hi and to see how their first day on the new job went.  It’s about making them feel like they always have a home where you are.  As they get older, it’s about including them in what’s happening in your life – good or bad.  It’s about being a shoulder and a cheerleader and a relentless truth teller when they are about to make a bad decision; even if you have made the same speech too many times before.

It’s about showing up in all ways.  I know Websters disagrees but “Parenting“, much like “love”, is a verb.  An action word.

 

My boys are not always happy with us.  Sometimes we’re the bad guys.  That’s ok.  We’re here and involved and active and we go on field trips and we plan trips to amusement parks and we make study guides and we  enforce rules and we get angry and we get silly and we make fart jokes and we do last minute school projects and we buy books at fairs and we practice bike riding and we suffer through movies we don’t like and we hang bad art on our office walls.  We give medicine and we talk puberty and we listen to endless stories about Nexo Knights and we make birthday hats for stuffed toys.  We get annoyed about lost items but we buy new ones.  Even though we already know the way and it takes them too long to find it, we allow them the space and time to read the electronic monitor at the airport so they can figure out which gate our airplane is leaving from.  We celebrate every milestone and achievement and good report card.

 

I’m sure the parents of the girls in the home have their own sad stories.  I am sorry about that.  I assume in many ways where the girls are now is the best place for them – just as my Grandparents were for me – But that doesn’t make it any less unfortunate for them.

As inconvenient and aggravating as parenting can be, there is no way to describe the rewards of seeing – up close – your child grow and learn and struggle and overcome and slip and succeed and cry and find their way.

The young girls at the home are understandably feeling pain over their situation, and they can’t see it now, but from where I sit today, it’s their parents who are losing out.

 

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.