Life On The B Side

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

Looking Through The Window October 12, 2017

It’s dark when I leave my home in the morning to go to work.

It’s dark when I get home from work in the evening.

It’s a long, tiring, 12 hour day.

 

When I leave my home for work in the morning, 1 child has already been dropped off at school and 1 child is still asleep in his bed.

I don’t get to spend “start of the day” time with either of them.

This is depressing.

 

When I get home from work in the evening, the children have already showered.

  • And the children have been fed.
  • And the children have finished their homework.

This is wonderful.

It makes my life easier in many ways.

This is sad.

I don’t even get to see the clothes they wear to school each day.

I don’t get to nourish their bodies.

I don’t get to help them exercise their brains.

These things are work – And they are a huge privilege.

 

I eat, I wash all the dishes/pots, I shower, I take out my clothes for the next day.

I ask how everyones day was.

I am home for less than 2 hours before it’s bed time for the children.

 

It feels sometimes like I am watching my children through a window.

There, but not THERE.

 

I like my job – and my coworkers.

This is a blessing.  I am not unaware of this fact.

My job causes me to miss doctors appointments and school functions and I don’t get to stay home with them when they have a day off for Columbus Day or a teacher work day.

My job prevents me from doing after school pick ups.

  • Even if there’s been an after school activity pushing the pick up time back.

This is guilt trip inducing.

Not just guilt trippy though.

It’s not that I feel like I should be there.  I want to be there for everything.

 

For everything I miss – Shaunie is present.

She gets all the days off that the kids get.

Her job allows for drop offs and pick ups and for chaperoning trips and for dinner prep and homework assistance and doctor appointments.

This is a heavy load to bear and it’s sometimes exhausting for her.

She does is all anyway.

My boys know they can depend on her.

That kind of consistency and stability and sense of peace is a gift to them.

The consistency and stability and sense of peace that they have is a gift to me.

For this I am beyond grateful.

 

I try on the weekends to make up for the lost time.

We actively seek out and attend family friendly events.

We play board games and we watch movies and we just hang out talking or doing side by side independent reading.

It never feels like enough.

Never!

Despite the best of efforts, quality family time is not always achieved or achievable – even on weekends.

  • The boys have plans of their own.
  • I am catching up on sleep/rest.
  • I am running necessary errands.
  • I am doing house chores.
  • I have other commitments.

 

Then it’s Monday again.

And I am leaving for work when it’s still dark and with one child already at school and one still sleeping.

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Issue # 4 October 4, 2017

If you’ve been here for more than 5 minutes you know our story.

As a baby he CRIED ALL THE TIME.

He didn’t sleep well.  Or eat well.  Or show any signs of being friendly.

As a toddler, he appeared uncomfortable ALL THE TIME and he was delayed in most developmental ways.

(Probably) out of frustration, he acted out in all the ways.  I know what it looked like to outsiders.

He was a handful (to put it mildly) and he tested my patience and my sanity on every level and in every way.

At age 5, he was not able to speak, read or write.  Forget writing; he couldn’t even hold a pencil properly.

Due to his Autism, he was unable to communicate in a way that I could understand.

He gave teachers and therapists and doctors and camp councilors and baby sitters a run for their money.  Many were not up to the task and crumbled.  Some stuck around and a small number are still here watching him grow and cheering him on.

We’ve been stared at.  Scowled at.  Laughed at.  Commented on.  Judged.  Teased.  Abandoned.  Given up on.

I read and researched EVERYTHING that was remotely relatable or relevant.

I spent YEARS being permanently tired and stressed and sad and worried and anxiety ridden.

I went to therapy my damn self.

 

At age 9, my boy is sweet and charming and a delight.  He’s considerate and loving and affectionate.  He is funny and helpful and interesting to speak with.  He has friends and is in clubs at school and is mostly responsible about doing what needs to be done.  He is well nourished and well rested – And always well dressed thanks to his superb sense of style.

He is happy.

(Except when he’s hungry.)

He is a joy to parent.

My boy wrote and illustrated a comic story.  In fact, he’s writing a series of comic books and has just completed issue 4.

This is not a small thing.

He worked hard to get to this point.  That cannot ever be overstated.

His teachers and therapists worked hard to get him to this point.  They continue to work hard.  The job is not done.   I will forever be grateful to all the strangers we meet at the start of every school year who go above and beyond to help their students.  Not because they will see any financial or professional gain or even get any recognition – But out of a general goodness of heart.

Family and friends have been unwaveringly accommodating and understanding and kept showing up for us and kept inviting us out and made lots of efforts to provide a happy and welcoming environment for him.  No matter what behaviours were displayed.

 

We never gave up on him or treated him as though he wasn’t smart or couldn’t accomplish things.  One bad day or minute was just that.  One bad day or minute.  We shook it off and started over with fresh optimism the next day.  Or sat on the floor in the bathroom to take a few deep breaths.  Chin up, smile on, back straight – Try again.

We never spoke about him as though he wasn’t there.  We never assumed the worst.  Only the best.

We kept going out and kept signing him up and kept asking for help.  We celebrated every bit of progress in a big way.  The people who love us, celebrated with us.

 

I’m so proud of my Jay Boogie and so very thankful for the support we’ve had throughout the years.  I just need to say that.  That support made all the difference.

 

Lots of kids struggle – Whether it’s due to their environment or their neurology or their physiology – Or any other myriad reasons.

Lots of parents are not coping well or responding appropriately.

Shaming, bullying, ignoring, abandoning, abusing, isolating our children is not the way.

Shaming, passing judgment, laughing at, ignoring parents who are struggling is not the way.

 

I wish every kid (and parent) who needed help, could get it.  No matter their family situation or their zip code.

What are we doing if we are not helping our children to be their absolute best?

 

 

That’s all I’ve got.

Well … that and a couple pictures of Issue # 4.  It’s freaking awesome!!!

 

2017-10-04 10.41.06

 

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Back To School – The 4th Grade Edition September 20, 2017

OK.  So.  We may need to ask our tutor if she can increase her hours and spend more time with our Jay Boogie.

If you ask him, he will say that school is going “pretty great“.

It is, if you only consider the social aspect of it.  He likes his teachers.  He and his classmates are getting along well.  He says his best friend is Abby.  He has joined the art club (which I’m very excited about for him) and he’s happy with his before and after care program.

 

The problem is that school isn’t only about your social life.  There is that pesky little aspect of it that involves academics.  Jay has always been the sort of person who learns things at his own pace and when he is ready to learn them.  For the most part, that’s been totally fine by me.  I didn’t stress out about when he’d be potty trained.  Then one day, he just was.  I tried for a hot minute to teach him to tie his shoe laces when he was 5.  Traditionally it would have been the appropriate time for him to learn it but he was not interested and for years we let it go and bought him slip-ons or velcro shoes.  I figured that when he was ready, he’d learn.  This past summer he did.  He was 9 years old.  For the past couple of summers I gently nudged him to learn how to ride a 2-wheeler.  It didn’t go well.  Again, I left it alone.  Lately though, he’s been outside on his scooter and he’s doing a fantastic job of balancing on one foot and steering the scooter down the entire length of the curb; even making turns.  I had never seen him do that before.  I think a 2 wheeler is not far away at this point.

 

For so many life skills, I can follow his lead and bring it up when he seems ready.  That doesn’t work with multiplication and division though.  He needs to know how to do 4th grade math and he needs to do it now, if he’s going to stay in the program he’s in.   The tests are going to come on his teachers schedule – Not his.  Now, don’t get me wrong, I know it’s not appropriate for all kids to be in a general ed setting with general ed expectations.  It may not be the right setting for him and we may be pushing him too hard and too fast, but my gut doesn’t tell me so.  I think he can do it.  He just needs to put in the work and maybe a little more effort than other students.

 

I know, as a kid, it sucks when other students seem to be learning things quickly and you are struggling.  It does nothing for your self-esteem.  But I cannot let him move to a different class (a special ed class) just because it would be an easier road.

I also know that homework isn’t fun.  It’s never been fun for anyone.  Still gotta do it.  Complaining and whining will not make it better.  Leaving your agenda book (with the assignment in it) at school will not make it go away.  Saying “I don’t know” to everything we ask, will not make us do it for you.

 

We, (Shaunie especially), really do try to help him with his homework and his studying.  Shaunie finds videos that explain things in fun ways and we give him rewards for completing tasks.  We give him breaks and try to cut things into small chunks and we don’t leave things for the last-minute.  (We’ve been studying for his social studies test since last week.  The test is this coming Friday.)   When he finally has a breakthrough we make a big deal about how proud we are of him and the pride he feels is evident.

 

I talk to him and I stress the importance of practice and studying and doing your best.  I tell him that nobody figures out everything the first time they try it and nobody gets all the questions right on all their tests.  I want him to know that getting 3 questions wrong on his “Fact or Fiction” quiz does not mean he is not smart or that he is not a good student.

I tell him that we will do whatever we can to help him.  I remind him that his teachers are there to help, even during a test, so if there is a question he doesn’t understand he can raise his hand and ask them to explain it.

 

What I will not tell him is that I spoke to his Aunty Juddles and she told me that she has Advanced Placement Science students in high school who do not know their time tables and who use a calculator for everything so even though I should still encourage him to learn them, it’s not the end of the world if he doesn’t learn them all this year.

 

It’s not the easiest job getting this kid through school.  Shaunie has a  couple more gray hairs and our pockets are about to be a little lighter thanks to extra tutoring, but with some (or a lot of) help, I know he can do it.  And even with all his protestations, I am so dang proud of him for the effort he does exert and all the topics he has already mastered.

 

Send wine or beer.

 

One Week In – The Middle School Version September 12, 2017

He was the same person on September 5th (the first day of school) that he was one day earlier on September 4th which will henceforth be known as BMS (Before Middle School), yet things were totally different.

Yes, he is the same person but parenting him is different.

On day 1, I made a plan to go to work late so I could walk him to the bus stop.  It was his first time taking the bus after all.  As we turned the corner we saw the other children at the end of the block already waiting – with nary a parent in sight.    I had to stop walking and bid my boy goodbye before the other children noticed us.  As I watched him walk away, he got smaller and smaller.   He made his way to the curb where he would wait and I saw that it wasn’t all in my head.  He was at least a whole head shorter than all the other students.  It was hard turning my back and walking in the opposite direction.  I never had to do that BMS.

On day 2 the students were assigned their lockers and Ace was given a top locker but he’s not from a family loaded with tall genes so he couldn’t reach it and they had to swap him with another, taller, student.  He’s still not quite grown.  Yet, he was so excited about the freedom he now has to roam the hallways in between each class.  We talked about how it’s now his responsibility to get to all his classes on time and to collect, from his locker, whatever books he will need to bring home in order to complete homework.  None of this was an issue BMS.

3 days in, I was getting questioned on whether or not he can take a cell phone to school because he is apparently the ONLY one who does not have a phone.  He was asking if friends could come home on the bus with him after school.  (Ahm, no. Friends can’t come over when no adult is home and we need to get their parents contact info – Same as BMS.)  After just 3 days, he was asking that we not wake him up so early in the morning and he’s taking it upon himself to make his own dinner.  Mind you, it’s microwave mac and cheese but still.

 

I believe there’s an upcoming school dance, which I’m sure parents are not invited to.  I know they will have teacher chaperones but I don’t remember going to a “no parents allowed” school dance until I was in (the equivalent of) 9th grade.  He’s getting jokes now that he didn’t used to get and he’s more concerned with how his outfits look and his little brother is no longer allowed into the bathroom with him at any time.

 

All these developments make my brain go a little haywire.  I think about the time I went to a school dance and had promised to meet my Grandma in front of the school by 11pm but I was too busy on the dance floor to notice the time and the next thing I knew, my Grandma was there, in our auditorium, looking for me.  How embarrassing!!!

It’s a good memory (now), and I love getting those triggers, but it makes it very real to me that this time with my Ace is going to go by very quickly.  Looking back at it now, my teenage years FELT like the longest ever at the time, but they were over in a flash.

I think about the lyrics to a song from the Dear Evan Hansen soundtrack where his mom sings to him:

 

And I knew there would be moments that I’d miss
And I knew there would be space I couldn’t fill
And I knew I’d come up short a billion different ways
And I did
And I do
And I will

 

He’s growing up and the truth is, even though it’s scary at times, I do love to watch it happen.    He’s the same person, but now that he’s in middle school, it’s calling for a different kind of parenting.  I will try to do it all right.  But I haven’t.  And I don’t.  And I won’t.  All I can do is my best and hopefully he will look back and say his memories are good ones.

 

*Note*  He’s one week in and he says it’s been great.  He swears that Middle School is better than Elementary School and much to his own amazement, he thinks he will enjoy History class.

 

Phone Calls September 6, 2017

Last week Thursday I got a phone call.

It was not a call that I wanted to receive.

My Aunt had been hospitalized.

I was sad and worried – But mostly concerned about her and her comfort.

I spent the weekend either calling or anxiously waiting to receive a call to get updates.

Good news! – She was treated and released.

I am still worrying because I know she will not follow the doctors orders to relax.  It’s not who she is.

It’s hard being an immigrant and living in a different country from your loved ones and not having easy access to help them.

 

Last week Friday I got a phone call.

It was not a call that I anticipated.

The boys step mom was in the hospital – Getting ready to have her babies.

That call altered/canceled any plans we had.

We had to go pick my boys up late at night and prepare a bed for them.

I got to see them sooner than I expected which made my heart happy.

Good news! – Everyone is doing well and my sons now have twin sisters which they are very excited about.

The new mom is an immigrant and all her family live in another country.  I’m sure that’s not easy for her.  I hope she gets the support she will need; one way or the other.

 

Last Sunday I made a call that I did not want to make.  911.

Shaunies Grandma needed to be taken to the hospital.

We were scared and worried.

We had to cancel plans to attend an engagement party/bbq for good friends and instead spent the weekend making sure that she was as comfortable as possible.

Good news! – She was treated and released.

We still worry because she’s home alone quite often and is not good about letting someone know when she’s not feeling well.

If necessary we are only a 4 1/2 hour drive away.

“Only” is relative when it’s your Grandma who you love more than anything and she needs you.

 

Last Sunday was Ace’s birthday.

We made the best of it – Even though much of it was spent at a hospital – And we had to cancel plans for him to see Nanas.

Shaunie brought home a cake just as the kids were going to bed but they were allowed to stay up and have some.

We made a plan to take him to an amusement park.  His choice of an activity.

He received calls and messages from family and friends near and far.

He received more cash gifts than ever before and more gifts yet are on their way.

I expected him to hear from all the people who should love him – and he did hear from most – but there was one phone call that never came.  That message was received loud and clear.

I am disappointed but he’s fine.  He knows who his family is and that it often has nothing to do with blood.

 

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.