Life On The B Side

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

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!!!

 

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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.

 

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.

 

 

 

 

Mind Reading July 5, 2017

I saw a thing online – It asked the question:

 

Whose mind would you like to be able to read?

Your partner, your child or your parent.

 

Right away, Shaunie said she’d want to know what happens in my head.

I’m glad she can’t – lol

 

I didn’t immediately know my answer.

I very quickly ruled out parent.  That left partner and child.  Who hasn’t at some point wondered WTF their partner was thinking?  But my first thought was “Definitely my child; specifically Jay.”

I mean, that was my wish for such a long time.  I dreamed about it and wrote about it and cried about it.  I wanted to know my baby.  I wanted to know what he liked and how he felt and what scared him.

 

When Jay was 4 years old I took my boys to the park.  It had a little fenced-in playground.  Other parents found spots on benches and sat while their kids ran around laughing and sliding and playing tag.  I walked around – this way and that – Always making sure that I could see my boys and that they could see me.  We weren’t at the point yet where I was comfortable not having them in my eye sight.  They were too fragile.  Ace with his over the top energy and Jay with his poor communication and frequent tantrums.

As I was leaning against the fence, Jay ran over to where I was standing and started staring up into a tree just on the other side.  Of course my eyes followed his gaze where I noticed the squirrel that had captured his attention.  He stood there for a while.  Then he said “out.”  It happened so quickly and so out of the blue that I wasn’t sure I had heard it correctly.  He had never said out before.  Up to that point, his entire vocabulary consisted of 2 words.  Had he even said it at all or was it in my head?  I looked around to see if anyone else had heard him because if they had, surely they would have made a big deal out of it.  Nothing.  Kids were still running and laughing and climbing.  Parents were still sitting.

I panicked because he had said something.  It was one word.  But it was something and I needed him to know that I had heard him and understood him.

But Ace was still playing.  I wanted to take Jay “out” and bring him closer to the tree and his squirrel but I couldn’t leave Ace there.  By the time I grabbed Ace would the squirrel have moved on?  Would my moment have passed?

That was our life.  Always on edge, grasping at every straw and gently holding onto every  precious morsel – lest we lose it.  We could afford to lose or waste nothing.

 

 

 

Last weekend, I sent the boys to bring our garbage can around to the front of the house in preparation for Monday mornings pick up.  It’s their standard Sunday chore.  Every Sunday I have to remind them to do it.  Every Sunday they complain about doing it.

But, I have something to say” Jay quipped.

Go get the trash can first and then you can say whatever you want” I told him.

Off they went and I was there with a ready ear upon their return.

 

It didn’t hit me until Shaunie and I were talking about the online question that I had been so cavalier about Jays desire to speak to me.  My son, who I spent so much time waiting and wanting to hear any word from.  5 years ago; 3 years ago I would have told you that you were crazy if you told me this would happen.  If you had said that I wouldn’t stop the world from spinning every time Jay wanted to share his thoughts.

 

Go get the trash can first and then you can say whatever you want.

WHAT???

 

 

When our neighbour offered to take my boys to the park with her son, Jay declined saying he’d prefer to stay inside as he’d had enough time outside and was hot.  Later when he was invited to their house for dinner, he accepted.  He did, however, ask if he could bring his own snack – weary as he was that they would be serving something he didn’t like.

He’s made it clear that he wants to go to a big water park this summer and he does not see the value in learning how to ride a 2 wheeler.  He let me know that he was proud of himself for trying pink lemonade at camp and complained to his father that I take too many pictures.  He says he wants to be a policeman when he grows up and he explained to a friend that even though school is out, he still needs his rest so he doesn’t mind having the same “early” bed time.

If he’s not happy with us, he shares why.  If his feelings are hurt, he is open about it.  If he’d prefer (frozen) at home pizza over our usual Friday trip to Costco complete with Costco pizza then he lets us know.  If he’s excited or bored or nervous or thinks something is funny, we know all the details.

At bed time if he wants me to stay with him for a while and cuddle he will ask.  Conversely, if he wants alone time, he will politely say “Do you want to go now?  You can if you want.  I won’t mind.”

At the local pool, he encouraged a friend who was nervous about going on the big slide.  He has already let us know what kind of cake he wants for his next birthday (in January).  If he’s mad about ripping a page in his book or about being told he has to do a chore before he gets a snack, he will be very vocal about his displeasure.  If he thinks he’s not being treated fairly he will be the first one to speak up.

If Ace is talking and Jay interrupts, I let him know that he has to be respectful and wait his turn.  His talking, while still cherished, does not take precedence over all things.  Not anymore.

 

This is our life now.  It happened ever so slowly – Yet, I have become so accustomed to it that it would be easy to overlook.

The bottom line is this … If he likes something he will say and if he doesn’t, he will also say.  Of all the people in my house, Jay is now the one who is the most open and who is the least likely to be holding back or hiding his true thoughts.

 

He still has many challenges.  He’s still socially out of tune sometimes and reacts to things in ways atypical to other children his age.  He is still vulnerable to bullying and/or abuse, but gone is the crippling fear I used to live with that he will be bullied and/or abused and not be able to let me know.

 

So even though I’d love to understand HOW their brains work, I am inclined to agree with Shaunie that the kids deserve the privacy of their own thoughts.  And even though I’m not sure if it would make things better or worse between us, I guess I’d choose to read my partners mind.  I’m sure there are some real gems rolling around in her thought bucket.

 

 

By the way though, as their mother, I reserve the right to change my mind about all of this when they are teenagers.

 

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.

 

The best-laid plans of mice and men often go awry April 17, 2017

Filed under: ADHD,Autism,Family,Life on the Jay train,Marriage,Special Needs Kids — The B Side @ 9:33 am
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We had such a great day on Saturday.  Ace and I went for a beautiful bike ride on a path that runs along our local river while Jay continued to practice his 2 wheel bicycle riding skills.  The four of us hung out at the rivers edge and watched as people fished.  The fish were biting that day.  We sat outside and had lunch at a lovely Italian restaurant.  The weather was simply perfect.  Back at home, the kids hung out and played with electronics while the adults took a nap.  As I told a lady I met on the bike path, it’s a lot easier to ride uphill when you are 10 years old.  Following naps we got some dinner and then went for ice-cream and Italian ices.  It was just a very nice, well-rounded, happy day.

Piggy backing on Saturdays good vibes we were so full of optimism that we decided that on the following day, after Easter service at Church and egg hunt, we would take some family pictures before going home to open Easter baskets.  We made sure to let the kids in on the plan. They were both down for the cause.

 

On Sunday we all got dressed up nice and fancy.  Church was great!  The kids did an amazing job.  Immediately after the service there was an egg hunt and literally ONE minute into the hunt, Jay bumped his head on a sign and it was all downhill from there.

 

 

He was in a sour mood and nothing we said could fix it.  There would be no family pictures.

Ace, bless his heart, really tried to salvage the day and said “I’ll still take pictures with you guys if you want.”  We did.  We got really cute pictures of Ace by himself, in all his bow tie glory.  We got pictures of him and I as well as him and Shaunie.  Then a stranger got one of the 3 of us.

All this while Jay sat in the car sulking.

 

Once we were done taking pictures we went home where Ace opened his Easter basket and was thrilled with his goodies.  Mini transformer toys, a couple of comic books and of course candy.

Jay went to his bed and his basket is still sitting on our living room floor.

 

As was planned, CC and Emma came to pick the kids up in the afternoon since they are on spring break this week.  They will spend the entire week in New Jersey.  This is a good thing because it’s important that they spend time with their dad and his family.  They will get to see Nanas.  It’s also important that Shaunie and I get a little break.

I was really disappointed with the direction the day took – But these things happen.

The good news is that when I checked in with CC, he confirmed that Jays mood had improved and Ace was his typical happy self.

Shaunie and I watched a comedy and then went out to dinner at a place that doesn’t serve chicken nuggets and waffle fries.

Waitress:  Would you like a 5 oz or an 8 oz glass of sangria?

Me:  The big one.  Give me the big one.  Thanks!

 

Jays Easter basket will be here when he gets back, still stocked with all his favourite things and we can always try again for the pictures on another day.  Our little town has lots of picturesque places and now that the leaves are back on the trees, it’s even more beautiful.

 

At the end of the day I am glad we had Saturday and I am glad that everyone has cheered up and I did love all the greetings shared among family and friends from all over the world.  I got new pictures of my niece who is the cutest niece that there ever was.

I hope everyone had a happy Easter and that all your plans played out just the way you hoped.

 

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.