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.

 

Sleep Over Balancing Act June 19, 2017

When we moved to Virginia, towards the end of a school year, Jay ended up at a different school than Ace.  Basically, Ace  got enrolled at the local public school for our zone and Jay was enrolled in the zone next door.  Jay needed a specialized program and there were no available spaces at Ace’s school.  The thought was that we’d have him finish out the year “next door” and then in September we’d transfer him to his rightful place at our district school.

Here’s the thing though – We fell in love with his school.  Well, the staff really.

They were amazing and he instantly found a home there.  When September came, we decided to leave him where he was.  It has not been inconvenient at all and there have been no issues with this arrangement.

Until.

The weather started to change in the spring and the neighbourhood kids began playing outside.  All the kids in our neighbourhood go to Ace’s school.  I  didn’t think this was a problem though because they always welcomed Jay to play outside with them even though they didn’t know him from school.  Kids are pretty cool that way.

 

Jay noticed however, and asked me one evening why it was that he never saw any of his friends playing outside.

It broke my heart.  All I could think was that here was one more way in which my boy was losing out due to no fault of his own.  One more way his different neurology was singling him out and making him feel “other”.  I hated it for him.

 

It got worse.

One day the kids were all out playing and ventured a little further than they typically do.  (Still safely within the confines of our complex).  Ace found out that yet another friend of his lives by us.  He was closer to this friend than any of the others.  The next thing I knew, this boy, oh heck, let’s call him, Zach, was at our house a few nights later for a sleep over.

There was much excitement about this sleepover.  It was the first one Ace had had with a school friend.  They had all kinds of plans to play video games and eat too much junk food and stay up all night.  (The junk food and the all-nighter didn’t happen by the way).

Even though we have a spare room and offered to let Zach sleep there, he made himself comfortable on the floor of Ace’s room with blankets and sleeping bags and the like.   There was much talking and laughing coming from that room.

 

 

Here’s the thing – Jay wanted very much to be a part of the sleep over fun.  Ace wanted very much to have his friend to himself.

I understood both desires.

I could’ve compromised.

I could have made Zach sleep in the guest room when it was bed time.  I could have forced the 3 boys to share the same space – either in Ace’s room or set them all up on the living room floor.

 

This time though, I had to rule in Ace’s favour.  He is expected to share a lot with Jay.  He gets lectured a lot on taking good care of his brother, especially when they are out together.  He’s told to be on the look out for bullies targeting Jay and to help him when he’s struggling to communicate.  He is reminded of Jays developmental delays and expected to understand and accept and include and coach and teach.

But I have to allow him to have something to himself too.  He has to know that he’s allowed to have relationships outside of his brother and that it’s not selfish to take care of yourself sometimes.

 

It was really hard tucking Jay in that night.  He was so sad.  He wanted to know why he wasn’t having a sleep over and why his friends never came over.  He wanted to know why Ace and Zach were leaving him out.  I tried my best to comfort him.  I even offered to lay down with him until he fell asleep.  I NEVER do that.  He turned me down.

He has brought it up no less than 10 times in the last couple of weeks.  “When will I get a sleepover?”

I don’t have an answer.

 

As hard as it is to hear those questions and to see Jay hurting, I know it was the right thing to do for Ace.

I’m not gonna lie though, I’m kind of glad that Zach spends his summers in North Carolina.  That buys me some time as I don’t expect to have to deal with anymore sleepover requests for a while.

 

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.

 

 

Early Start September 26, 2016

It’s not October yet – Fall officially began only 3 days ago – But we’ve already gotten our fall fun underway.  That’s not to say that I don’t want to hold onto the summer for as long as possible.  I do.  However, when you find good deals on Groupon you go with it.  Plus, there weren’t a lot of crowds and I get to post my pictures before everyone gets tired of seeing pumpkins all up and down their timeline.

We made a very beautiful drive out to the Shenandoah Valley this past Saturday and spent the day at a farm.

The farm was set up with a lot of different areas where kids can have fun.  Once inside, you roam around and enjoy each thing at your own pace.

 

There are no pictures of the first stops we made.  Jay ventured to the petting zoo area with Shaunie while Ace and I went straight to a giant air pillow that you could jump on like a trampoline.  It was pretty cool.

 

Following those things, the boys decided to try their hand at roping a cow.  It didn’t go well.  I mean, it well well for me because I got a good laugh but it didn’t go well for the kids who really wanted to get the rope around the cows neck.

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They had a little section with sand for digging and playing and also a couple of farm vehicles to climb into and pretend drive.  They had a tether ball pole and “pumpkin tic-tac-toe” and corn hole type games.  The boys didn’t spend much time there.  I did take a minute to pose for a picture or 2.

 

(My hair looks crazy becasue it was windy.  Not because I have unruly hair – Which I kinda do but that’s besides the point.)

 

Those were taken after I decided to sit ON instead of walking ACROSS the tires.  They were not as sturdy as they looked.  If you think that means I nearly fell off and embarrassed myself you’d be absolutely correct.  The following is me laughing at myself following the near fall and sighing relief.

 

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OK so after my foolishness it was Hay Ride Time!

Who doesn’t love a good hay ride?  And a scavenger hunt one at that.  We had a list of things to spot as we made our way around the farm.  All the kids that were on our ride worked together to find and then announce the items.  Jay didn’t want to take any Hay Ride pictures.  He was too concerned with us sitting carefully and not being silly while we were moving.

 

 

Up next was some see-sawing … Which I hadn’t done in years and some spinning in a barn tunnel thing.  I have video of us spinning in the “Twister-Barn” but it also shows other peoples kids so I’d rather not put it here.  Just imagine pushing that black part around and around like a hamster wheel and then falling once you got too close to being upside down.  The kids had a blast in there tumbling all over each other.

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Ace shot small pumpkins out of a cannon blaster and Jay went down a Mega Slide.

Both boys jumped into a corn pit which works just like a ball pit.  They had a lot more fun in there than I would have expected.  They did cannon balls off hay stacks and made corn angels and rained corn kernels on each others heads.

 

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Wait a second … I forgot to tell you that we did a corn maze.  I’m not typically a fan of mazes.  I get nervous.  This place had an easy one and a hard one.  Guess which one we did?  They apparently do a haunted maze in October.  Yeah NO!  I have no interest thank you very much.

 

(Inside the maze)

 

OK … Where were we?  Pumpkin Blaster, Mega Slide, Corn Pit.

Also, there were pig races and pumpkin smashing.  Ace got selected to help open the gate for the pig race and they were up front and center for the pumpkin smash so of course they got pumpkin juice all over them.  Fun stuff!

While all that was going on, we were taking selfies.

 

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Before we moved on to the next thing I tried to get a good picture of the boys together.  This is what I got.  I know it could be worse but Jays’ face isn’t exactly what I was hoping for.  A Mama can try though can’t she?

 

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What we thought was gonna be the last thing was picking a pumpkin.  There was much debate over what size pumpkin we were going to get and how many of them.  Shaunie and I were on Team ONE, NOT TOO BIG, ONE and Ace and Jay were on Team GET WHATEVER YOU WANT AND HOWEVER MANY YOU WANT.

We compromised and got one regular sized one (for Jack-0-Lantern making) and each kid also got one personal sized one.  I have no idea what they are going to do with the little ones but for $0.84 it was worth it to make them happy.

 

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By the time we had done all that – We were hungry.  We decided to head out and hit up a Chick-Fil-A.

We found snacks in the car though so we delayed our Chick-Fil-A stop and did some apple picking.  Why not?  Most of us had fun with it.  We ate a few apples while roaming around the orchard and checked out the cows in the nearby pasture.

“Someone” … (Not me or Ace or Jay) … spotted a dead possum in the grass and got a little freaked out and tried to pick the rest of her apples from INSIDE the car.  It didn’t work out so well but makes for a funny story.

 

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Overall, we had a really good day.  It never gets old having wholesome family fun with the people I love.

Happy Fall To All.

 

They’re Back September 8, 2016

 

They’re back home – And this mama is happy.   We are back to making grilled cheese sandwiches and to giving good night kisses.  We are back to chore lists and finding fallen ice on the floor in front of the fridge.  We are back to laughing in the evening as Shaunee drags both boys, at the same time, across the carpet as they lay on their tummies, much to their delight.  We are back to hanging out and talking about moles and birthmarks, the krill that blue whales eat or how much it would hurt to get stitches.  The boys are back to demonstrating their karate moves (neither one takes karate) and back to Jay complaining about the amount of toothpaste Ace uses.

Jay, I think, is happy to be back in his own bed.  Every night so far, he’s fallen asleep as soon as his head hit the pillow.

Ace, is up to his usual antics of getting out of bed for more hugs and kisses, or to get water or to show us his dance moves.

 

Some things never change.

 

It’s amazing how much can change in a month.  Jay is now interested in having a healthier diet.  I have witnessed him eating carrots, a banana and watermelon.  He asked for an apple to go in his lunch box.  I hear he also eats oranges, peanut butter sandwiches and yogurt.  He drinks regular white milk now (in addition to what he used to drink; strawberry milk).  He tasted a pretzel and declared at dinner, “The next protein I am going to try is fish.”

When I spoke to CC and tried to give him credit for this change, he said it was all thanks to his wife Emma.  I do appreciate her ability to get Jay to turn this page.

 

Ace is 10 now.  He got Legos and more Legos and more Legos.  He’s in Lego heaven.   We got him an ice-cream cake because he used to like it but apparently no longer does.  His size 10 pants are short and his size 3 shoes are tight.

 

~*~

 

They’re back at school – And one kid wanted summer vacation to drag on forever while the other couldn’t get out the door and to his classroom fast enough.   We are back to filling out tons of paperwork and sending in money for trips and *gasp* graduation gowns.

Jay came home after his first day saying it was good and telling us about the new fish tank in the resource room.  Ace left his homework at school.

 

Some things never change.

 

It’s amazing how much can change from one school year to the next.

Jay is now in a general education class all day.  He has 2 teachers and goes back and forth between 2 classrooms.  One teacher does math and the sciences while the other does language and social studies and the like.  It’s a totally new set up for him.

Ace is still kind of the new kid in school but he’s not the newest kid in school.  There was 1 new boy in his class this year and they have apparently been leaning on each other and have formed a quick friendship.  I am happy about that.

We are looking into clubs and activities for both.  Possibly 4H and the gardening club for Jay and Navy Cadets and track or swimming for Ace.  We will see.

 

Stay tuned to see how this new school year plays out and what else will change; Inasmuch as many things will stay the same.

 

 

 

E-Schedule May 4, 2016

Filed under: ADHD,Autism,Family,Special Needs Kids — the jay train @ 8:12 am
Tags: , , , , ,

Sometimes I do something and then think to myself … “Duh Deens.  Why didn’t you think of that sooner?  You would’ve saved yourself a lot of headaches.”

Case in point … Electronics!

 

Never mind that in our house we have 2 Kindle Fire’s, 2 laptops (one of which they have permission to use), an i-pad, 2 phones (one of which they sometimes get to use), a play station and an X Box the kids ALWAYS fight over ONE item.  Whoever has the i-pad, the other one wants it.  No!  Desperately NEEDS it or they might die.  If one has the laptop, the other MUST HAVE IT.  If one is watching TV, the other cannot bear to do anything else but to use the play station hooked up to that TV.

 

“But he used it all day yesterday and I didn’t get a chance.”

“That’s not true.  You’re a liar.”

“No I’m not.  I only get it for a little bit.”

“You get it all the time.”

 

*insert my heavy sigh and eye roll*

The fights over electronics have caused many tears and yelling and much frustration.  I was ready to throw all of them out.

I don’t get it.  Why doesn’t it work when I suggest they read a book instead of fighting over electronics?

 

Anyway, the other night as we were eating, an argument ensued over who would get to use the laptop following dinner and bath etc.

I was done playing referee.

I got out a piece of paper and a marker and made a schedule.  It is now laid out clearly for anyone who cares to take a look at our fridge.  We know who gets access to what on which days.

If kid A wants to use something and it’s not his scheduled day he has to get verbal permission from kid B.  No arguing.  Just ask nicely and wait for a response.  If it’s a no, then so be it.

 

We even drew lines for them to sign the schedule and while Ace happily signed it, Jay refused.

That’s ok though … It still went into effect and has been working like a charm.

 

*Insert sweet sigh of relief*

 

Just Jay February 26, 2015

Nobody’s job is perfect and most of the time it’s kind of a pain in my butt that the boys go to different schools; mostly due to them having different schedules and the juggling act can get tricky.

But there are days when I really love the job that I have and when the kids being on different schedules works marvelously.

Earlier this week, Jay had a half day at school so I packed up my laptop at twelve and headed home to wait for his bus.  Once we were both inside, I set up shop in my living room and Jay set about playing.

There was no fighting over who would get to use my phone and there was no jockeying for my attention.  Jay contentedly played with his animal toys and watched animal videos.  I worked on my spreadsheets and reports with the sweet sound of his scripting in the background.  Every so often he’d say “Mom?” just to make sure that I was still listening and I’d absent-mindedly say “mm hmm” or “yes” while I typed away.  That was enough to satisfy him.  I hope that doesn’t sound bad.  I was really enjoying having him as my background music.  He sounded so happy and peaceful and calm.  It made me happy and peaceful and calm.  When there was a burst of laughter from him it made me laugh also.  He even offered to share his snacks and juice with me.

I am thankful that I got that time with just Jay and that I have a job that allowed me that opportunity without me having to use up vacation time 🙂

Hopefully I get some time with just Ace soon. It’s quite amazing how different they are when they are alone vs when they are together.  One of my favorite things is their bond and seeing them play together.  I wouldn’t trade that relationship for having an “only child” – but it’s also nice when each of them and I can get time together – just 2 of us.