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.

 

For You We Always Will June 13, 2017

Well, it happened.  The boy graduated from elementary school.  What a journey it’s been.

I told a friend on the phone … “I made it through without crying.”

His response was the equivalent of … “It’s not really that big of a deal in the grand scheme of life.  There are bigger things ahead that really deserve to be celebrated and that will probably make you get emotional.”

 

No“, I said, “You don’t understand.  For some peoples kids getting through elementary school is easy.  For mine it was not.  I am just so proud of how he has performed over the last 2 years.  The first 3 were rough.”

 

I remember the days when every single report card came home with a note saying we needed to have a parent teacher meeting.  Shoot, in some cases, I had to meet with the Vice Principal.  I remember when having his own personal chaperone on a field trip was mandatory.  There were times when I couldn’t make it and our Nanas stepped in.  I remember in second grade when they threatened to hold him back and have him repeat due to near failing grades.  I remember, with much appreciation, all the things his teachers did to help him even though there was no legal reason for them to do so.  Bringing in their own personal i-pads to school to use as an incentive for good behaviour.  Allowing him to play with Legos in a quiet office when his body was too agitated to sit through reading time.  Buying books with their own money that they thought he’d like to encourage reading.  I haven’t forgotten the concern over his fine motor skills.  (His writing was all but illegible).  I remember the phone calls I received telling me about the latest injury he received because he fell over in his chair.  I can recall his teachers treading lightly as they attempted to suggest we take him for an evaluation with a specialist.  They didn’t want to offend.  But they saw him struggling.  I remember him starting to hate school and being scared to begin a new year in a new grade with a new teacher.  I remember  his school choosing to put him with a specific teacher in 3rd grade because they thought she would have the skills to reach him and help him.  They were right.  She was a great fit for him and he loved her and learned to love learning.  School, was still not easy, but it stopped being such a scary place.

Fourth grade and fifth grade were vastly different.  There were no more “needs improvement” check marks on the behaviour section of his report.  There was marked improvement in his organization skills.  He began getting A’s and B’s.  He joined, and enjoyed being a part of, multiple after school activities.

 

So you see, while to many an elementary school graduation may not be a big deal, for us it is worth celebrating.  First we struggled and then we conquered.

 

It was a team effort and his support team is stronger than ever.  I will say the one part of the ceremony that almost got to me was at the very beginning when the Vice Principal asked the graduates to turn around and look at the crowd behind them.

That’s your support system.  Those are the people who helped you and will continue to help you.  Lean on them.  They love you.”

And there we were, sitting proudly in the auditorium.  Myself, Jay, Shaunie and CC.  All together for our boy.  When it was his turn to collect his certificate, Jay stood up and shouted “Ace is next” and then he clapped bigger than anyone else.  Shaunie and CC were on photo duty.  I sat up straight, soaking in the moment and beamed.

 

It happened.  The boy graduated from elementary school.  What a journey it’s been.

 

 

 

~*~

When you’re feeling lost in the night,
When you feel your world just ain’t right
Call on me, I will be waiting
Count on me, I will be there
Anytime the times get too tough,
Anytime your best ain’t enough
I’ll be the one to make it better,
I’ll be there to protect you,
See you through,
I’ll be there and there is nothing
I won’t do.

I will cross the ocean for you
I will go and bring you the moon
I will be your hero your strength
Anything you need
I will be the sun in your sky
I will light your way for all time
Promise you,
For you I will.

I will shield your heart from the rain
I will let no harm come your way
Oh these arms will be your shelter
No these arms won’t let you down,
If there is a mountain to move
I will move that mountain for you
I’m here for you, I’m here forever
I will be your fortress, tall and strong
I’ll keep you safe,
I’ll stand beside you, right or wrong

For you I will lay my life on the line
For you I will fight
For you I will die
With every breath, with all my soul
I’ll give my world
I’ll give it all
Put your faith in me 
And I’ll do anything

(For You I Will – Monica)

 

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.

 

Buh Bye CST – Hello LD June 6, 2017

I thought it was gonna be a standard IEP (Individualized Education Plan) meeting.  We’ve been having these meetings at least twice a year since Jay was in pre-k.  I walked into it with all the confidence and calm of someone who’s been around this block several times and has a good relationship with the school and the current child study team.

 

  • “ … blah blah blah … Jay still qualifies to receive services based on his disability – Specifically, autism”

  • “ … blah blah blah … One-on-one aide, speech therapy, extra time to complete his tests, preferential seating – check check check.”

  • “Have a great summer, see you guys next year.”

 

Instead, the Vice Principal (who is always a part of these meetings) along with the Autism Resource Teacher (who we absolutely adore) hit us over the head with some unexpected suggestions.

Would it be … they wanted to know … OK with us if they moved Jay from being under the CST (Child Study Team) umbrella to being under the LD (Learning Disability) Team umbrella.

Say what now???  What does that even mean?

 

It turns out that a Child Study Team involves more people and provides more services than an LD team.  A Child Study Team includes a psychologist, a social worker, a general education teacher, a special education teacher and any necessary therapists (speech, physical, occupational).

An LD team only consists of a general education teacher and a learning disability specialist teacher.

 

Jays current team thinks that he no longer needs all the support that is provided through the Child Study Team.  In a way, they are graduating him to the LD team.  As such, he will be expected to spend his entire day in a general education classroom without a full time aide.  He will also no longer be pulled out of class for speech therapy.

He will still have an IEP and his current aide will do “check ins” to see how things are going for him in class.  He will have an LD teacher work in tandem with his general ed teacher  to determine his specific learning style and will recommend specific teaching methods and strategies that may benefit him.  The LD teacher will also help to teach him organizational skills, study skills, and learning strategies.

 

 

His current teacher noted that he does better on tests that are administered via old fashioned pencil and paper than he does on tests that are administered via computer.  (It’s too easy for him to just click random answers quickly without even reading the questions so the test can be over.)  We have a plan to address that issue.

 

We have also already identified that he has dyscalcula – Which is a fancy way to say he struggles with math.  Kinda like how people with dyslexia struggle with reading.

(If you’re a word nerd like me and like learning new ones, I’ll also give you this – dysgraphia refers to struggles with writing)

(Speaking of word nerds, how is it that the English language doesn’t have a word which means … “Someone with a big vocabulary” ?  Websters needs to get on that.)

 

So, to wrap this all up, (if you’re even still reading), my baby boy is losing some of his team, and while it’s scary, it’s also exciting.  4th grade will be interesting.  He will be pushed harder than he’s ever been pushed before, academically and socially.  I’m sure he will not always be happy about it, but the hope is that he will be able to rise to the challenge and next school year will be a success.

 

His resource teacher told us as we were walking out … “This was such a hard decision for me.  I didn’t want to let him go.  But in the end, I knew I had toWe can’t let him get away with skating through school.  We have to get him ready for middle school and for the world.”

I got a little choked up.  I know he holds a special place in her heart; Just as she holds one in ours.  She may not formally be a part of his school team anymore but she is still a part of our family team.

 

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.

 

Lightening It Up May 25, 2017

With all the talk of crap parenting and the confederacy, things have gotten a little heavy around here.  Let’s lighten it up a bit.

I’ve been seeing all the graduation pics on Facebook this week … My friends kids are moving up from kindergarten to first grade.  Some are leaving middle school behind and heading off to high school.  Others yet are done with college.  It’s kind of jarring because for many of these kids I remember them as little tiny tots.  In a couple of weeks my own child will have his elementary school graduation and move on to middle school.

 

I went home yesterday and asked my boys if they wanted to go for a walk.  Ace was an instant yes.  Jay wanted to know where we were walking to and if he could bring a snack in case he got hungry.  That’s so them.  Ace jumps in head first.  Jay is cautious.

It wasn’t the best weather day.  It was grey and had been either raining or drizzling all day.  None-the-less we took off.  As I tucked my phone into my back pocket, Ace informed me that I was not allowed to use it at all on this walk.  This was our time.

Jay held my hand as we strolled through the neighbourhood.

We talked about how our days had been and about plans for the summer.  We talked about new friends and friends that we miss in New Jersey.  We even talked about the meaning of Christmas.

It was nice.  No plan; no agenda; nothing we were running late for.

 

When we got to the end of the road, I asked the boys if they wanted to walk back the long way we had come or if they wanted to take a short cut through the field.  There was a catch though; If we took the short cut, we’d have to race home.

You know what they chose.

 

Through a wet, muddy, uneven field we ran.  My lungs were burning by the time I climbed the final hill that would drop me in front of our house.

 

In truth, we hadn’t been out for very long but it was clear that the boys had enjoyed themselves and I certainly had as well.

 

The next time I blink, it will be one of my boys who is graduating from college and who knows if they will still want to just hang out with dear old mom.

 

3 pairs of dirty sneakers and some burning lungs were more than worth the quality, no electronics allowed time.