Life On The B Side

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

The Knowing September 13, 2019

I recently came across something I had written (but never posted) on August 7, 2018.

 

 

Therapist:  So, what brings you here today?

Me:  I don’t know.  I just feel overwhelmed.  With my life.

 

That was how my very first therapy session started.  It was the spring of 2013.

At the time, I had a job that I wasn’t happy at.  Pretty much no money.  A 7 year old with not-yet-diagnosed ADHD, who was struggling in school.  A 6 year old, whose autism had a chokehold on the entire house.  The relationships with my husband, father, mother and grandfather varied from shitty to non-existent.  I had curled inward; away from my friends.

I felt very alone.  I was a mess.  Drowning.  And I saw no way out.  I didn’t go to therapy thinking there was anything they could do or say to “fix” my life.  I mean really.  What could they do about any of the things I was anxious about or overwhelmed by?  But what other choice did I have?  I had to try something.

 

I ended up going to 5 sessions.   It helped, but not in the way I think most people go to therapy expecting it to.  My therapist helped me to simplify and organize my thoughts.  It was a relief to say some things out loud that I’d been guarding tightly.  Ultimately, we decided that my life boiled down to 2 things.

  1. Sometimes things suck and you just have to get to a place where you accept that they suck and you have to stop looking for/hoping for/expecting different. Just accept.
  2. Some things – like your job and your marriage – can change, but they won’t change (for good or bad) on their own. You play an active role in what you allow. How much are you willing to tolerate before you make steps towards making that change?

 

 

August 2018.

Shaunie (my wife):  What’s wrong?  You got quiet.

Me:  I’m just in a funk.

 

How do I explain it to her?  She’s a “fixer”.  But there’s no easy fix when depression creeps in.  You know all the things.

You know it could be worse; there are people who love you; you have lots of reasons to be happy and grateful.

You know that if you ask her to do something specific she will make it happen.  It’s who she is.

You also know that she’s dealing with her own schtuff and the last thing she needs is you adding to her plate a bunch of “to-do’s” that will ease you to some extent but won’t magically “un-funk” you so there’s no point in putting her through that.

Everything feels like a huge problem and like it will take energy I don’t have.  The house needs tidying up.  I feel fat.  I look old.  I have to renew my license.  The kids need new passports.  I need to catch up on over 200 work emails.  I have a phone call to a sick friend I’m supposed to make.  I need to make arrangements with the kids dad for him to see them again before the summer is out.  I got an email saying my credit score had dropped.  I always have another dentist appointment I need to schedule.   And I always know that the next one won’t be the last one.  I am SO OVER THE DENTIST.

No, I don’t want tea or to laugh or sex.  I just want to curl up in bed.  It’s all I can manage.  That’s what feels easy.  Doable.

We cuddle and I fall asleep.

It’s a sweet relief.  From life.

But now it’s the next day and I can’t stay in bed.  I have to shower and go to work and make phone calls and wash dishes and hang back up the picture that fell off the wall.

 

I think back to my therapy sessions.

What can I control?  What do I have to let go of?  What feeling is weighing me down that I need to just accept/let go off, instead of trying to make it be different?  One thing at a time – The tension in my brain starts to unwind.

 

Ace starts 7th grade soon.  It comes with certain stresses, but, in quiet honest moments, I am not too worried about that.  It’s his second year of middle school and last year went pretty well.  He has a cell phone now, thanks to his Grandma, so I’ll have to figure out some rules around his use of it as well as install some parental controls; but that’s stuff we can manage.

Jay.

This one is a little harder.

My heart constricted a little when I typed his name.  For the last couple of years, I had not fretted about the start of the new school year.  But he’s going into 5th grade which will be his last year of elementary school.  I cannot handle the thought of him leaving that environment.  Elementary school had begun to feel safe for him.  Comfortable.  Predictable in its own way; even as we moved up the grades.  His teachers, the mostly innocent and friendly and understanding kids, the routine.  The special education team was always the same at IEP meetings etc.  Middle school will be different.  There will be a totally different set of students as none of his current friends will attend the same middle school as him.  A different school staff who don’t know and love him – yet.  A vastly different daily routine.  Different expectations.

“Different” with Jay is scary.

 

BUT, I can’t control these things – And certainly not now.  Why am I already stressing about next year?  I don’t know.  Ask my old friend anxiety.

 

Things will settle down soon enough I reassure myself.  I will get over these feelings eventually OR we will address the things that need addressing – Which will serve to calm me down.  I KNOW this.  I know this because I’ve been down this road before.  More than once.

And in this case, today, the knowing is the force holding me together.  It is my life jacket.

 

 

To Be Continued ………….

 

A Quick Read – On Respect April 10, 2018

People have a tendency to talk about (not to) children – As if they are not standing right there.

People especially have a tendency to do this to special needs children.  Heck, people do this to special needs adults.

 

It’s often not consciously done and not intentionally meant to demean.  BUT IT IS DEMEANING.

 

I don’t think Shaunie and I have ever had a specific conversation about this – Which is why I was particularly pleased to get the below message from her this afternoon following a doctors appointment she took Jay to.

 

He is getting a shot as part of his 10 years shots.
I had to tell them to ask Jay questions instead of me. 
I never want him to feel like he doesn’t exist.
And he asks when he doesn’t understand a word they use.
He is human and he needs to be independent in most ways.
She drives me nuts sometimes (as spouses do) but in all the ways that count, she is a good egg.
 

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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Early Start September 26, 2016

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

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

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

 

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

 

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

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

 

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

 

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

 

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OK so after my foolishness it was Hay Ride Time!

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

 

 

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

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

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

 

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

 

(Inside the maze)

 

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

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

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

 

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

 

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

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

 

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

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

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

 

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

Happy Fall To All.

 

Science And Music? What? September 21, 2016

Sitting around the corner and listening to Jay study science with *Shaunie.
He’s learning it folks. About condensing, melting, freezing, the physical properties of matter, atoms, molecules etc.
He’s learning science!!!! At grade level. It’s not easy for him but he’s trying so hard.
He may not get an A on his test but he’s really learning and I couldn’t be more proud.
I made the mistake of thinking back on when I never in my wildest dreams could have ever imagined this. I couldn’t have imagined anything even close to this.
I don’t have the words to explain this feeling.
Too emotional.

 

 

That was my Facebook status the other day.  Our beloved Nanas commented that she always knew he’d get here.  I can’t say the same thing.  I always had high hopes for him.  Of course.  But I’d be lying if I said I always knew my son would be in a general education classroom studying the physical attributes of different kinds of matter.  I dared not assume that he’d ever be able to answer the question “What is an atom?”  Yet, that’s exactly what was happening.  

I had to dry my tears when I heard Jay get up and I realized he was making his way to where I was perched on the stairs.  

Later in the evening, I lay on the couch with him for a few minutes.

I wished him luck on his upcoming test and asked him if he liked science.  He said yes.  I asked him about math and reading.  He said they were OK but math is hard.  He said he prefers science to both math and reading.  I asked him what he thinks about his art class.  I wasn’t surprised to hear that he LOVES art.  

Lastly I asked him about music class to which he said “It’s loud in there and makes my ears hurt.”  

Jay doesn’t have a lot of sensory issues.  If he did have one though it would be related to sounds.  He’s not a fan of out-of-tune singing for example.  I asked him if he’d like me to talk to his teacher about music class.  I told him it was possible for him to do something else instead.  I thought for sure he’d take me up on that offer but instead he mulled it over for a minute and then said “No.  I will stay.  I think I can handle it.”  

These types of back and forth conversations will never NOT be a miracle to me.  

I am blown away by this child.  

 

September 4 years ago, I published posts where the big news was that Jay sat and listened to his first story.  I published posts where Jay was getting kicked out of 2 different social skills classes.  He wasn’t yet reading.  Heck, he wasn’t yet speaking in sentences.  Not even 2 or 3 word ones.  He definitely wasn’t able to take any kind of standardized test at school.  He was in an autism class where they were just trying to get through the day without anyone getting yogurt dumped on their head.  

Before bed last night, I hugged him tight and told him how amazing I think he is and how brave I think he is.  He shrugged me off.  He doesn’t get it.  To him, I’m just a Mom being mushy and weird.  That’s alright.  He doesn’t have to get it.  

 

To all the families who are currently where we were 4 years ago … I know it’s rough.  I know everything seems impossible or implausible.  I know all you want is for your child to say your name.  You don’t even know what your baby’s voice sounds like.  How can you think about science or music class?  Your brain is full – And tired.  I know you want one night of uninterrupted sleep.  You’d do anything to be done with diapers – After all your baby is now 5 or 6 or 10.  If you could just get them to eat 1 new thing you’d be happy.  You’re not asking for much.  It doesn’t have to be cauliflower.  You just cannot make ONE MORE grilled cheese sandwich.  But you will.  Cause that’s all your kid eats.  You don’t want to hear other people telling you to stay hopeful.  You sure don’t want to hear about how their child is also a picky eater.  You don’t want to hear about the things you should be doing or what worked for their neighbours kid.  You don’t feel like you are doing anything right.  You don’t want to fight with schools or insurance companies anymore.  You just want things to be easier.

My God, I get it.  

But hang in there.  It may not happen at the same rate as my son or anyone elses son.  That doesn’t matter.  All that matters is that you don’t give up.  Keep looking.  Keep trying.  Keep working.  Keep talking.  There’s no magic pill or therapy or device.  It’s HARD.  It’s ok to cry.  But just keep keeping on.  

ASSUME THAT YOUR CHILD CAN LEARN.  ASSUME THAT THEY ARE HEARING EVERYTHING YOU SAY AND ARE AWARE OF EVERYTHING YOU DO.  ASSUME THAT THEY ARE BRIGHT AND CAPABLE.  

 

The reward just might be your kid acting like it’s no big deal that they know what the volume of a mass is because in their own matter of fact way they will say “Yeah, I’m smart“.   

 

Let’s Talk About Drugs and Alcohol September 20, 2016

 

Jay:  Hey Mom, do you know what you’re supposed to say if someone asks you to smoke?”

 

Me:  What do you say?

 

Jay:  You say no thank you.

 

Me:  Exactly.  That’s perfect.  But what if they say, “Come on, just this one time.  We’re all doing it.

 

Ace *Jumping in on the convo*:  Nope.  It’s not good for you.

 

Me *Switching to role playing mode*:  We just have one and we’re going to share it.  Just take one pull.

 

Ace:  No way.  It will make you sick.

 

Jay:  Yeah, and I don’t want to get sick.

 

Me:  Wanna try this instead?  It’s not a bad drug.  It’s just weed.  It’s natural.  It’s a plant and my friend grew it.

 

Ace:  No thank you.  It will mess me up. 

 

Me:  Ok fine but here’s a can of beer just take a sip of that.

 

Ace:  That’s for adults.  It will make kids sick.

 

Me:  One sip won’t make you sick. *Takes a sip of juice*.  Look.  It doesn’t do anything.

 

Ace:  That’s alright.  It may not make me sick now but it will make me sick later.

 

Jay:  That’s not for kids.  That’s for adults.

 

Ace:  Yes and a doctor didn’t say you could have it.

 

Shaunie:  Well, what if someone offers you a pill?  One that they got from a doctor.

 

Ace:  I’ll say oh no.  That’s not meant for me.  You can only take what’s meant for you.

 

Shaunie:  But it’s from a doctor so it’s ok right?  What if your friend says they take it all the time?

 

Ace:  Yeah cause it’s made to treat whatever they have.  If I take it and I don’t have that then it will make me get it.

 

Shaunie:  Ahm, that’s not really how it works but you are right that you should never take someone else’s medicines.  

 

Ace:  Oh ok.  Yeah.  That’s what I was saying. 

 

Me:  You’re such a punk.  Everyone does it. 

 

Ace:  That’s ok.  I don’t want any.

 

Me *Back in Mom mode*:  Well, good job guys.  This is important stuff.

 

Ace *Looking very pleased with himself*:  Yay!  We got it all right.

 

Me:  You did, but, this will be an ongoing conversation.  This isn’t over.

 

 

 

[The conversation above has been recreated to the best of my ability 3 days after it happened.]

 

They’re Back September 8, 2016

 

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

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

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

 

Some things never change.

 

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

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

 

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

 

~*~

 

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

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

 

Some things never change.

 

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

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

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

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

 

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

 

 

 

Love No Matter What August 31, 2016

 

When Jay was a baby, we struggled mightily.  There were many sleepless nights and many more tears.  He was uncomfortable and fussy a lot of the time and nothing could soothe him.  Now, when I tell people about Jay being a difficult baby, we laugh about it.  It makes for funny stories.  Back then I was falling apart.

When we got his Autism diagnosis, it was awful.  We didn’t know what that meant or what the next step should be.  I didn’t want it to be real.  I wanted him to out-grow it.  I wanted him cured.  I wanted him to have been mis-diagnosed.  As a part of his evaluation, we took him to a well-respected hospital for a hearing test.  I remember sitting there hoping that my 2 year old had a hearing problem.  Not Autism.  Hearing loss would be easier I thought.  Teach him to sign.  Give him hearing aids.  No problem.  We can deal with that.  Not Autism.  The only things I knew about it were bad and I felt ill-equipped.  And cheated.

 

For a very long time I couldn’t bear to say the word.  It would get stuck in my throat if I even tried.  I didn’t want anyone to know.  I felt like since Jay didn’t have it bad, we could hide it and that would be the best way to go.  I would cry – In my car and in the bathroom at work and while taking a shower.  The shower was my favourite place to cry.  I was embarrassed at myself and my weakness.

 

At the time, I had a coworker who had an Autistic teenager and he talked about it very openly.  I admired him and his wife.  In speaking with that coworker one day, he mentioned that even though it had been a tough road in many ways, if someone was to somehow hand him a magical pill to make his sons Autism go away, he didn’t think he’d give it to him.  As he saw it, the son he had raised and knew and LOVED so very much would then be gone.  Taking away the sons Autism was akin to losing his son altogether and being handed a brand new person.  He didn’t want a brand new person.  He loved the son he had.

That blew my mind.

I thought he and his wife were better parents than me because they were so accepting and at ease.

 

I worried.  I hid.  I bargained with the universe.  I messed up at work and almost got fired.  I barely scraped by.  I smiled and laughed when I was outside.  I was angry.  I was sad.  I told everyone that things were fine.  I felt lost.  I didn’t let anyone in, but I felt abandoned and alone.

I healed.

 

Eventually I got comfortable.  I bonded with my child.  Learned him as best as I could.  Tossed out my own agenda and insecurities and fell head first into what he liked and responded well to.  We put things in place to help him.  We developed good relationships with teachers and started talking honestly with family and friends about what was going on which allowed us to have a support system.  We found our happy.

None of it has been easy.

I wouldn’t change it if I could.  I don’t want a different child.  I love the one I have and I don’t wish for him to be anything other than what and who he is.  I want the same thing for him that I would want for any child I have and what all parents (should) want for their children – For him to be happy and for him to be the best person he can be.  I will do anything I can to help him.  I will guide him.  When it’s appropriate I will take his lead and listen to him.

 

 

When Ace started school we began to see that he was different.  The other kids were able to sit and do their work.  They didn’t talk or move constantly.  They formed and maintained friendships easily.  They weren’t quite so clumsy.  He stood out.  We made all sorts of excuses.  He’s the youngest in the class, boys will be boys, he never went to day-care so he’s not used to this kind of setting.

Then he went to first grade and things were still bad.  He actually stood out more.  We were called in for numerous meetings with his teachers.  We tried all sorts of things.  We tried to explain away his behaviours.  We hoped he’d mature over the summer.  He had another birthday.

Second grade was worse.  He got into a lot of trouble.  He started to feel badly about himself and his lack of ability to function in school.  His teachers got more and more frustrated – but they tried.  His grades started to slip.  Then came another summer where we hoped he’d mature.  Another birthday.  Third grade didn’t bring any relief.  He had his favourite teacher to date.  She was great.  He loved her.  She was trained in special education and had wonderful ideas and strategies about how to get and keep him engaged.  Nothing worked.  Other kids were breezing through.  Of course they were.  It was elementary school after all.  I thought back to my time in first through sixth grade and they were wonderful.  A real cake walk.  I saw and heard my friends brag about their kids academic accomplishments and I smiled politely.  I was resentful of (what I perceived to be) their easy road.  My kid was failing classes.  He was struggling to get through soccer practice and karate class.  We ended up quitting both.  This was not the life I had imagined.  Online I shared funny things he said and cute pictures I’d taken.

 

We had come to the end of our rope and had to make some difficult decisions if we wanted to help him.  Not decisions that any parent wants to make.  He was only 8 years old.  A baby.  MY baby.

It was hard.  I cried.  I messed up at work.  I almost got fired for a second time.  Or maybe it was the fourth time by then.  Work suffered a lot.  That also stressed me out.  I couldn’t afford to lose my job.  I Googled symptoms and treatments and therapies.  I searched online for other parents experiences.  I told everyone things were fine.  We signed him up for social skills/OT groups.  Even there, among other special needs children, he stood out.  I didn’t eat well.  I worried.  It was all I thought about.  It hurt.  I hugged him.  I prayed for him.

I healed.

Fourth grade was his best year yet.  We are relaxed heading into fifth.

The bottom line is that I love my son and I wouldn’t change him.  I don’t want to make him into a different person or wish for another son instead of the one I have.

 

I don’t pray or raise funds for a cure.  I don’t sit around wishing Jay didn’t have autism or Ace didn’t have ADHD.  To me, now, that’s like saying I wish this child I had was not here and I had a different child.  Even on the hard days.  Even when I think back on the hardest of days and nights; I would not wish these particular children away.  I cannot imagine my life without them (exactly them) being a part of it.

 

 

I read excerpts of a book by Sue Klebold and listened to an interview she did.  Her son was one of the Columbine shooters.  I am paraphrasing here but essentially what she said was:

 

For a while after it first happened I used to wish that he had never been born.  I wished that I had never gone to that college and met that man and gotten married and had that child.  If I hadn’t done any of that then this terrible thing would not have happened.  With time I came to realize that I love him no matter what.  I love him so much that I don’t want to imagine living my life without him being a part of it.  So even though the pain that he caused to others cannot be forgiven, the pain he caused me can be forgiven.  And while I recognize that the world would have been better off without him, it would not have been better for me.

 

Even the worst of us are someone’s child.  She talked about receiving threats and about how people treated her as if what her son did was her fault and feeling unwelcome when she went to the memorial site.  She knows that people are hurt; And rightfully so.  But she is hurt too.  Her son died too.  She’s not excusing or justifying what he did.  But she loves him still – No matter what.  I understand that kind of love.

 

I watched a documentary of a family who are raising a transgender child.  The parents share their pain and worry and the internal battles they fought.  They talked about how the relationships with some loved ones changed and how incredibly difficult the whole thing has been on them all, in every way.  This is not a life they would have ever chosen and it certainly is not something that they are pushing onto their child as has been suggested by some people.  They fought against it for years and put him in counseling and tried everything to make their son feel like a boy.  She said she got to the point where she would go to Church and spend the entire time praying for her son to “only be gay”.  That would be easier than him being transgender.  This was her baby.  When the mother, through tears, talked about her then 4 year old son contemplating suicide or saying that he couldn’t wait for his parents to die so he could grow his hair and wear a dress it broke my heart.  She looked at the camera and said “If your child, at the age of 6, talks about mutilating their own body so they can feel right, you get on board with what’s going on.  You stop pushing against them.  And if that’s not your way, then screw you.  My child won’t be one of the 41% of transgender children who attempt suicide.  Not on my watch.”  He is now a she.  (Socially not physically).  And happy.  It’s still hard.  Every time they leave their house, it’s a minefield.  But she loves her child and is there for her every step of the way.  No matter what.  She no longer wishes for her son back.

 

Whether you’re the parent of a girl with Down Syndrome or that of a robber or murderer.  The parent of a gay or transgender child or that of a blind boy.  The parent of a drug user or prostitute or someone autistic.  Parenting is hard and none of us have all the right answers.  We nurture them towards a certain type of life, but ultimtely we don’t get to choose what we end up with.  The bottom line is that it’s not about us or our comfort zones or our dreams.  We either love our children or we don’t.  When they need support, we support them.  If they need help, we help them.  If they need protecting or defending, well, you get it.  There is no gray area.

The love is all-encompassing.  Visceral.  Deep.  Fierce.  Tender.  Abiding.  It can render you completely broken and helpless.  Yet, even in the most broken of broken-ness; you love.  Still.  No matter what.

 

I’m not saying I don’t want life to be easy for my children.  Of course I do.  I don’t want them to suffer or be in pain or have to deal with bullies and prejudice.  I’m not saying they can do no wrong.  I am not and will not always be proud of the choices they make.  What I am saying is that at the end of the day, while I may need to adjust to some things, there really is nothing that my boys could ever do or ever be that would make me love them any less or distance myself from them.  NOTHING.  The love I have for them is automatic.  It’s a done deal.  They don’t need to earn it or maintain it.  It just is.  There is no pain or stress or cost that would make me wish I had never had precisely them.

 

Uncharacteristically Calm August 23, 2016

The boys go back to school in exactly 2 weeks.  I should be freaking out.  They have special needs.  ADHD and Autism to be specific.  They need 504’s and IEP’s which means I will have to fill out lots of paperwork and attend many meetings.  We will fight over homework and I’ll get annoyed when I’m tired but still need to pack school lunches.  We will all need to wake up earlier.

We had to spend money on too many school supplies and school clothes and shoes.  Back in New Jersey they wore uniforms.  Not so in Virginia.  I love school uniforms.

 

In years past, I’d be writing lenghty letters to each of their teachers detailing do’s and don’ts and fyi’s and just in cases.  I shared things that worked in the past and things we had been trying over the summer and things to expect.  I begged them to please just have some patience with my boys.  Work WITH them.  Work WITH me.  I’d give them all my contact info – even though the school (and presumably they) already had it.  I needed them to understand down to their core that they could get in touch with me at any time for any reason.  I needed us to be on the same page … The page that said there was no such things as over-communicating.  I hoped to relay that I was there to help them.  I was on their side so we could all be on my sons sides.

 

Normally I’d be scared to send them back to school.  Heart pounding.  Not sleeping.  Not eating.  Nail biting.  Scared.

New teacher.  New expectations.  It all worried me.  Would they be alright?  Would the school work be manageable?  Would Jay tantrum and make his teachers day miserable?  Would Ace talk his teachers ear off or be seen as weird by the other kids?

 

The boys go back to school in exactly 2 weeks.  The supplies have been purchased.  The new clothes are folded and hung.  The book bags and lunch boxes are sitting in the corner – waiting.

The IEP and 504 meeting notices will come when they come.  No big deal.  For the most part things are already in place.

 

I do not have any draft letters in my documents folder.  I am not freaking out.  I am calm.

The boys have really gotten into the swing of things where school is concerned.  They understand themselves pretty well and can communicate pretty effectively on their own behalfs.  I have found that teachers generally do want the best for all their students and will do what they can (and/or need to) do for each of their students – without me asking them to.

 

I feel confident that I can send my loves off to school and they will be fine.  Will issues pop up?  No doubt.  Will we all handle them on a case by case basis in the appropriate way?  I do believe so.

I feel supported.  At home and at the schools.

 

3rd grade and 5th grade will bring unpredictable challenges.  This school year will be interesting and bumpy and we will stress out at times – But it’ll be OK.  I’m ready.  Excited even.

 

We’re Full Of It July 27, 2016

The other day I was talking to a long time friend.  As usually happens the conversation bounced around quickly from politics to jobs to physical fights (I’ve never been in one) to relationships and finally landed on kids; And more specifically helping them with homework.

 

This friend has no kids so he was just in the conversation for entertainment purposes; Not to commiserate.

 

I confessed that sometimes when I’m helping the kids with their homework, I don’t actually know what I’m doing.  I mean, it’s been a LONG time since I had to manually add fractions.  Find the common denominator, change the original numerators, add them together and then simplify.

I told him that the worst part isn’t that I have to re-teach myself before I can help with the homework … The worst part is that the kids expect me to know the answers to everything so when I balk, they give me a look which is a combination of shock and disappointment and then it turns into amusement.  Ace will tease me about being as old as I am and for not remembering what I’ve learned.  “Mom, how long ago were you in the 4th grade?  Was it like 100 years ago or something?”

 

I went on to say that as much as I’d like to say that I take it in stride, the truth is that I usually say something like … “Don’t give me that look.  I had to remind you to brush your teeth this morning and you put your shirt on backwards, so, there.”

Real high level parenting happening around these parts.

 

He was dying laughing at my pettiness.

The truth is”, I continued, “basically all parents are faking it.  None of us know what we’re doing.  We’re just trying our best to do as little harm as possible; But you don’t realize that about your own parents until you are one yourself.”

We had a good laugh.

 

Later, I was relaying that conversation with yet another friend.  This one does have children.  He agreed with me wholeheartedly and added his own flavour.

Apparently when he’s helping his child with homework, and then he gets stumped, he will suddenly “need to use the bathroom”.  Then he will privately use Google or YouTube to help him figure out the question.

 

That’s brilliant!” I said.  “I’m gonna start doing that.”

Yeah, it’s great except my son thinks I have chronic diarrhea.”

Diarrhea or realizing you’re not as smart as they thought?  I’ll take diarrhea.”