Life On The B Side

Taking all that life throws at us one moment at a time

Missing My Boys – and – A 504 At Work August 7, 2017

Filed under: ADHD,Autism,Family,Special Needs Kids — The B Side @ 1:04 pm
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On Friday, we stayed up until after 2 am catching up with friends – While their two sons slept in our two sons beds.  It was nice – But I miss my boys.

We spent our Saturday night hanging out with friends and family at a 50th wedding anniversary celebration.  We had a great time – But I miss my boys.

Now, it’s Monday – And I’m on my lunch break – And it’s raining  – So I’m at my desk – Eating peanut butter straight out of a jar – And the boys have been with their Dad for 2 weeks – And the kids being gone does make it easier to focus on things such as packing and moving – But I miss their laughter and the feel of their skin and their stories – So my brain wanders back to a time, 5 years ago, when ….

 

~*~

 

I’m sitting at my desk and my cell phone rings.  It’s not a number that I recognize but it has the same area code as where we live.

Hello.

Hi Mrs C.  This is Ace’s teacher calling to tell you that he’s having a very good day today.  I have you on speaker.  The entire class can hear you.

25, six year olds kids shout out … Hi Mrs C.  There is lots of giggling.

I laugh … Oh!  Wow.  Well, this is a great phone call to get.

I just wanted you to know that he’s been sitting quietly and paying attention and he and his partner have done a great job with their project we’ve been working on.

I say how proud I am of him and that I am very happy to get this news.

He sounds a little nervous as he chimes in to tell me that he is being good and to tell me about his project.

I don’t want to say anything too cheesy so I just say I love him and I am very proud of him and that he should keep it up.

The call ends with a chorus of goodbyes and I hang up – Smiling.

 

~*~

 

It was towards the end of first grade and Ace had fairly recently been diagnosed with ADHD.  His 504 plan was brand new and as a part of the plan, his teachers were supposed to give him positive reinforcement.  That phone call was them wasting no time in following the plan.  It was the first such phone call I had ever gotten.  I loved it.

In speaking with his teacher on the last day she told me that in that last month of school, she had gone on to make those phone calls to other parents as well.  She did it partly because she didn’t want the other kids to feel like Ace was getting special treatment and partly because it was just nice.

For us, it had been a rough journey getting to the point where my boy got a diagnosis and where a plan was implemented – But I was happy to know that other kids were benefiting from it as well in some small way.  It made me feel good to know that other parents got to share in the sweetness that was that phone call.   It can make all the difference when you are at work – On a Monday – And it’s raining – And your lunch is peanut butter straight out of a jar.

 

 

 

 

The Good (?) Part About Moving July 26, 2017

Filed under: ADHD,Autism,Family,Special Needs Kids — The B Side @ 11:22 am
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If there is a good part about moving, it’s this:  Finding lost treasures as you sort through, throw away, pack up.

 

I was actually going to get Ace’s birth certificate (to renew his passport) when I saw a plastic bag overflowing with papers.

Well, I thought, I might as well go through this mess and get rid of whatever junk I can.  There’s no point in bringing it to the new place.

I got to work – And along with a trash can full of stuff that I threw away, I also found a CD of pictures from my bestie’s wedding.  They’re about to celebrate their 14th anniversary so:  a) Pictures on disc were a thing back then and b) I was skinny and there are pictures of me in a bikini in which I don’t look half bad (if I do say so myself).

 

I found lots of evaluation paperwork and school reports from when Jay was 4 to 6 years old.  Back then, he was still getting “N” – Not Yet Mastered – in areas like “Writes Recognizable Letters” and “Counts from 1 – 20” and “Names Shapes” and “Identifies Body Parts”.

There were also communication logs from one of his stints in a social skills therapy group.

 

Jay was calm upon coming to the office but resists being guided.  He has begun to follow my finger pointing.”  Oct 2, 2012

Jay is very easily distracted and has difficulty regulating and getting into engagement.  He responds to his inner sensations and not outside relationships.  He is now tolerating spinning on the board and being pushed on the swing a lot better.  He did some cutting and played with putty.”  Oct 9, 2012

 

Oh sweet boy, you’ve worked so hard and I am so impressed with where you are today.  You had to learn how to tolerate spinning and swinging?  Now you beg us to take you to the “big amusement park” so you can get on the big roller coaster.  I can’t wait to see what 4th grade will bring.  I’m not nervous at all.  Just excited.  Amazing right?

 

Then there were the folders from Ace’s 1st and 2nd grade classrooms with his work in them.

In first grade, the kids were encouraged to keep a diary and write down at least one thing each day.

 

Oct 12, 2012My babae brin a pumpkin.

(I have no idea who babae is.  Wish I did.)

Oct 15, 2012why can we have a outside lunch or an art lunch. Why!

Oct 18, 1012I,m gowen to korf my pumpkin.

Jan 15, 2013I have a Bumbol Bee Transformr. I have a lagow areplan.

Mar 13, 2013I am gowing to get a bowinaroo.   I am going to the srkis.

June 20, 2013I can welcome new neighbors by saiding hellow.  I will might discover that they frendly.

 

Then on the first day of second grade there was this letter.

Dear 2nd Grade teacher,

Hi I am Ace.

I am exsidid.

I am looking forward to have fun.

What dos 2nd grade look like.

 

Love,

Ace

 

Now he’s about to start middle school and in case anyone was wondering, his spelling has come a LONG way 🙂

 

Moving is a pain in the butt, but going through all these papers was actually fun.

 

Sneak Peak July 18, 2017

We’ve had a teenager staying with us for a couple of weeks now and let me just say that it was a shake up.

 

First of all, she’s a “she” which is quite different from having 2 “he’s”.   Hers is a world of making matching tie-dye bandanas with her best friend and taking selfies showing off her various hair styles.  It’s a world of nail polish and emoji’s and the mall.

 

She’s 14 so she’s not a kid, but she’s also not an adult.  It’s a fine line to walk for both her and us.

Even though she’s on vacation, we are still who we are so she has chores and the tutor who comes (yes, even during the summer) to work with our boys has been helping her also.

 

We monitor social media posts to make sure they are age appropriate and try to find the sweet spot between outfits that are cute and trendy but not too “grown”.  We still have to tell her to clean up her room – all while talking about crushes and suicide and drugs and abortions and STD’s*.

One minute we are in the throws of peer pressure to smoke and the next thing you know we are painting toe nails and singing songs from High School Musical and drinking strawberry milk.

 

Being a teenager hasn’t changed.  When she writes, she decorates her pages with hearts and the dots over her i’s are big circles (to look cute).

Yet, teenagers nowadays are living a totally different existence than the one I lived.  It’s scary.  They have too much access to things they are not mentally equipped to handle.  There is so much pressure to be raunchy.  Thanks to the few who have turned bad publicity into lucrative careers, things that my friends and I would have thought were scandalous have become “goals”.

 

Her time with us is coming to an end.  I will miss her a lot and I’m sure the boys will too.  It’s been a joy seeing her have fun and experience new things.

We’ve laughed a lot.  In addition to Fun Land and the river, we’ve played board games and Uno and been to a water park.  Shaunie and I were even able to go on a mid-week date since we had a babysitter.  She’s been VERY tolerant of Ace and all his talking and she’s been completely unphased by Jay and his moods.  Her and the boys have developed a relationship where they trust her and love hanging out with her while they watch TV, but they fight over who has to sit in the middle seat in the car.

The 3 of them ganged up on Shaunie to tease her about being scared to go down the big slide and they really get a kick out of it any time her and I make fun of each other.

 

Having 3 kids means more.  More fun and more laughs and more hugs and more “I love you’s”, but also more money and more mess and more tiredness.  Kudos to you guys who have 3 or more kids.  It’s a JOB.

Taking it all into consideration though, she’d be welcome back at any time.

 

We are on the cusp of having full time teenagers and I can only imagine what things will be like when my boys get to be the age she is now.  Based on what we saw over the past 2 weeks with regards to the topics of conversation, I’d love to think that it is far away but the fact is that it is less than 3 years away.

Having her has been …. eye-opening, and interesting, and scary, and helpful, and heart stopping, and a breath of fresh air, and tiring, and a treat.

 

 

 

*We are Aunts so I think that makes it easier for her to open up to us about certain things than with her mom and yes, we tell the mom everything that we think is even remotely concerning.
 

Our DMV Summer July 12, 2017

Filed under: ADHD,Autism,Family,Marriage,Special Needs Kids — The B Side @ 11:36 am
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Lost camera, aching feet, bad bruise on hip, scratched knee, drinking contaminated water, bug bites, and sore finger tips – All in the last 2 weeks.

We’ve been having a great summer.

That’s not me being sarcastic.  We really have been having a good time.

 

I lost my water proof camera when we went river tubing.  It was my fault.  I rested it down in the drink pocket of the tube to help Jay and the next thing you know we both fell over and there went all my pictures from trips taken over the past 3 years.  I dived down trying to retrieve it, but river water moves quickly and it’s sandy and well, maybe it will wash up in China and someone else will get to use it.  Good for them.

Besides that little mishap, the tubing was relaxing and beautiful and the kiddos had a blast.

 

The aching feet and the contaminated water came about when we decided to spend the day touring the National Mall in Washington DC.  We’d been there a few times to various museums – Sometimes with the kids and sometimes not.  This trip though was because Ace has been asking to go to the Air & Space Museum and I’ve been wanting to take them to see the Lincoln Memorial and White House.  We decided to take the train into the city which only added to the fun for the kids.

Following the museum we got ice-cream and headed towards the other end of the mall.  Along the way we stopped to dip our feet in a big fountain, saw some trapeze artists from the circus doing a free show outside, bought over-priced pizza and iced coffee and posed for pictures.  After what felt like a lifetime we made it to the World War II memorial which I had never really checked out before.  It’s pretty cool in that there’s a big water fountain in the middle and then columns with each state etched into it.  People were finding the state they were from to take pictures.  By that point, we were so tired, even though we could see New Jersey, we couldn’t walk to New Jersey.  Oh well.  Did I mention that it was hot and sunny?  No?  Oh, well it was.

EVENTUALLY – (It is a LONG walk) – We got to the base of the Lincoln Memorial and it was time to climb the 87 steps that take you to the top.  *Fun fact* : 87 is equal to the “fourscore and seven years” from Lincoln’s famous Gettysburg Address.

Even though my entire party was complaining about being tired, it was well worth the journey.  Jay announced that it had been a dream of his to see the statue (who knew?) and we all enjoyed the view of the Washington Monument from that vantage point.

But people, we still weren’t done walking.  We had to walk almost the entire way BACK to get to the nearest Metro stop.  Whew!  That’s when we came into contact with the contaminated water at a drinking fountain.  I don’t want to embarrass anyone though so I’ll leave that story alone.

 

We spent last Sunday at “our river”.  (A different one from the tubing).  I love the river.  We packed a cooler and found a new (not crowded) spot and just hung out.  There was a little water fall area that the kids kept sliding down.  I succumbed to peer pressure and decided to give it a try.  That’s where the hip bruise came from.  Hello rocks.  Note to self, leave kid things to kids.

We had snacks and climbed rocks and just spent a lovely afternoon with nature.  We closed out the day with a fire in the backyard and a bushel of crabs.  (Hot dogs cooked on the fire for the kids).  *Insert bug bites – despite those tiki bug torch thingys – and sore finger tips.*  We remedied the bug bite situation with bug spray and just dealt with the sharp edges of the crabs because – deliciousness.  And beer.  Beer helps to dull crab finger pain.

 

Yesterday we dressed up as cows to get free Chik-Fil-A and hit up a local fun place which included go karts and video games.  We have tickets to attend a reggae & wine festival and are hoping the weather is good enough for us to make it to a water park soon.

 

I hope everyone has been making the most of their summer; short as it is.  That doesn’t mean we are not thinking ahead to Christmas though so if anyone wants to gift us nut crackers for next summers crab eating, that would be just lovely 🙂

 

 

 

 

(p.s.  The DMV is DC, Maryland and Virginia)

 

Life On The B Side July 10, 2017

For a while now, I’ve been wanting to change the name of my blog.  (I don’t think I can change the actual website link name … Well, I think I can but I have some logistical questions so I’m waiting until I can get my techy friend Robbo to come help a sistah out.)

In the mean time though, I can change the name that appears as my header so that’s what I’ve done.

 

All those years ago when I first began blogging, I was consumed with autism.   I ate, breathed, and dreamed ABA, self-contained, sib shops, sensory integration, adaptive technology, theory of mind, floor time, social stories, insurance coverage, equine therapy, fine motor skills, chelation, gluten free … you name it.  It was ALL I Googled about.  Autism was the ONE subject matter on all the blogs I followed.

Also, all those years ago, my boy was obsessed with trains.  Thomas the Tank Engine to be exact.  We spent hundreds of dollars and hundreds of hours on Thomas.  I hated the expense more than the time.  Some of the songs are actually pretty good and I enjoyed the Hero Movie.  And no matter how mature I am, remembering how it sounded when my toddlers said “Percy” will never not be funny.

 

The name Life On The J Train made perfect sense – At the time.

 

Things have changed.

Now our lives do not revolve around autism anymore.  It’s still obviously a huge part of all our experiences, (will always be), but it’s not all consuming, all the time.

Now I write about many different topics.  Now I follow bloggers who write about many different topics.  Now, Ace is as much a part of my blog as Jay ever was.  Just like we all have, my blog has evolved.

Life has undoubtedly turned out to be vastly different than I thought it would be.  Vastly worse in some ways, yes, but also vastly better and easier in others.

 

I have chosen my new name as way of acknowledging my “Holland”.

(In case you are not familiar with it … “Welcome to Holland” is an essay about having a child with a disability which uses a metaphor of excitement for a vacation to Italy that first becomes disappointment when the plane lands instead in Holland and then contentment at the happy events which they experience instead.)

 

What I once thought would be an outlet for doom and gloom and despair has turned into what I hope my boys will see as a gift.  I hope they see my growth and understand the dark moments.  I hope they enjoy having all this info about their lives at their finger tips.  While other people may not be able to fully see the beauty in our lives, I have come to treasure all our experiences.  Because of everything we’ve been through, I love harder and appreciate on a deeper level.  I am better and stronger and braver.

I have LOVED The Jay Train.  Truly.  Starting this blog is one of my favourite things I have ever done – ever.  But I’m ready to move on to The B Side.

 

If you are like me and were a child in the 80’s (or earlier) then you know all about A sides and B sides on a cassette tape.  For you young’uns … The A-side usually featured the songs that the artist thought were the good ones.  The ones they hoped would receive radio airplay and become hits.  The B-side (or “flip-side”) had the songs that were considered to be more fluff and less substance .  The thing is though, there are many B side songs that out performed expectations and became hits.

 

Unchained Melody, I Will Survive, Save The Last Dance For Me, We Will Rock You  – Yup, all B side songs.  All huge hits that no-one saw coming.

 

This new header takes into consideration the totality that is my life … my writing … my experiences.  The things I never could have predicted.  It is to symbolize that while there probably is some garbage, amazing goodness can come out of what people assume will be something bad or mediocre.

 

Now tease your hair, think about your favourite Molly Ringwald movie and grab a pencil cause it’s highly likely that I’ll unravel at times.

 

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About Me – And Us July 6, 2017

Just as with my last post, I was motivated to write this post because of something I saw online.  It was this past Fathers Day and one of my Aunts posted a message talking about her dad – My grandfather.  It was then that I realized that before she did that, I had never even known his first name.  It was a strange realization.

It led me down the road of thinking about other things that I do not know.  There is so much.

It also led me to think about the times I’ve spent just chatting with my Aunty J in Jamaica.  A couple of months ago while we were there I learned for the first time why her brother moved away (got sent away) to Canada to finish high school and she told me what it was like for her when she left Jamaica – alone as a teenager – to attend college in England.  She talked about the boat ride and getting lost and having to borrow money and living off 300 pounds for an entire year.

I loved hearing her stories.

 

All this got me thinking that I want my boys to know things about me – And about themselves.  Random things.  Things that they may not ever think to ask about or that may never come up in conversation.

 

Things like the fact that Ace got his name a long time before he was born.  There was a boy in my high school who went by a different name altogether and then one day I learned what his real name was and I fell in love with it.  This boy wasn’t my friend in any real sense of the word.  We had no relationship at all really.  I just loved his name and made a decision there and then (when I was 14 years old) that I’d name my son that one day.

Ace was born at 8:05 am by C-Section.  My official due date was September 27th but I was scheduled to have a c section on the 13th since he was breach.  However, my water broke at about 2 am on the 3rd so that was it.  The whole thing was calm and fairly easy.  I never felt one contraction.

This may be a weird thing to say but the first thought I had after they took him out was … “What’s the date???  Please don’t let me forget the date.  It will be so bad if I can’t remember my babies birthday.  I am sure I am going to forget the date.  Deen, remember todays date.”  Lol.  Maybe that was because of the drugs I was given and maybe it was because I had been so focused on the 13th up to that point and maybe it was just my hormones going crazy.

 

 

Jay got his name because his dad liked it.  I was campaigning for Gavin or Tristan.  I did get to choose his middle name though (which is neither Gavin nor Tristan).

Jay actually has a cousin with the same name who is 3 months older than he is.  They claim to have chosen the name first but they didn’t.  They stole our name.  I don’t say that with animosity.  Just stating facts.  🙂  This is why I advocate for keeping your name choice quiet until delivery day.

He was born at 2:20 on a Tuesday afternoon after about 16 hours of labour and 15 minutes of pushing.  We had left one year old Ace with Nanas while we went to the hospital and he stayed there until Jay and I were discharged.  I don’t know what we would have done without her.  When I tell you she’s been there with us through it all, I mean it.

Jay also came 3 weeks early.  Seeing as he is a January baby, I of course worried about the weather.  I did NOT want to make the news because I birthed a baby in the Holland Tunnel due to being stuck in snow storm traffic.

Jay had the most unruly hair I’d ever seen on a baby and while we were in the hospital he was most comfortable sleeping on me.  He was not a fan of the basinet.

 

That’s all I’ve got for today.  I will try to make this a recurring theme.  Hopefully – Maybe – One day the boys will read this and find it at least a little bit interesting.

 

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.