Life On The B Side

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

The Knowing Continues September 18, 2019

THAT <– was then – Over a year ago.  Please read it before continuing here.

 

Jay’s been a middle schooler for about a month now.  He was both nervous and excited to begin the new chapter.  He was looking forward to taking the bus to and from school with his brother.  He was looking forward to having a locker.  Thanks to the good job that Ace did of “selling it”, he was also looking forward to meeting his teachers and taking some new types of classes; wood shop and cooking for example.

 

I was also both nervous and excited.  I worked from home on their first day so that in case I received a phone call saying things were going horribly wrong, I could be at the school in 10 minutes.

The phone call never came.  The boys came home and both had had a good day.

By the end of the first week, Jay was echoing many of the same things Ace had said after his first week of middle school (2 years earlier).  “Middle school is great. I love moving from classroom to classroom for each subject. Middle school is so much better than elementary school.”

 

I was overjoyed and relieved.  At the time, I considered posting on this blog about it because it made me so happy and I wanted to store that feeling somewhere other than in my heart.

 

I’m glad I waited though because what I write next is what really made me post.

 

 

Last week, the boys brought home their interim report cards.  Ace, who’s been doing really well over the last couple of years is holding on to his straight A status.  Jay, who has been steadily improving, but who doesn’t see himself as academically gifted, had mostly A’s but then also a C and a D.

According to his report, he had missed turning in some assignments and that was the cause of the lower grades.  Jay swore to me that he had handed everything in.  So, I emailed the 2 teachers in question to ask for more information.

Here are the responses:

 

(1)

“Good Morning!

I am missing a bell ringer from him. I have looked through all of my graded things and I do not see it. I will talk to him about it today. He mentioned it to me at the beginning of class yesterday, but we ended up running out of time.

Jay* has been very good about talking to me when he needs something so I will talk to him again today! I hope you have a great day! Let me know if you have any other questions.”

 

And then later in the day …

 

“We found his old missing assignment and he turned it in. I will try to get it in the computer soon!”

 

(2)

“Hi, thanks so much for sending this.  I figured out what it is. He did not do the states crossword puzzle.  Missing one assignment makes a big difference.  I have five crossword puzzles on my board marked with “no-name”, so if Jay* knows he did it, it’s probably there.  If he didn’t do it, he can still hand it in for credit.  Once that is taken care of, his interim will reflect the change and be an A.”

 

Now, the improved grades are amazing and I do think it would do a lot to boost his own confidence if he were to bring home a final report with all A’s, but I was brought to literal tears from the line:

“He mentioned it to me at the beginning of class yesterday, but we ended up running out of time.

Jay* has been very good about talking to me when he needs something …”

 

THAT is NOT the child who:

I was told by a “licensed doctor”, when he was 2 years, would need to be heavily medicated and possibly institutionalized by the time he became a teenager.

I wondered if he would ever speak, when he was still non-verbal at 5 yrs old.

Began kindergarten as a 6 yr old, in a self-contained “autism class” with 6 students and 3 teachers.

Would SCREAM and meltdown on a DAILY basis.

Got kicked out of speech therapy and summer camp due to his uncontrollable behavior.

Because he wasn’t able to handle it; Got moved around from a large group to a small group to just 2 kids in a social skills group at a therapy center dedicated to helping children on the spectrum.

 

As recently as April of last year, this is what was said during one of his IEP* meetings:

“He hasn’t cried all year.  He whines quite a bit but that’s better than crying.”

 

This does not mean that all things every day are now perfect.  He still has some things to work on – As do we all.  But I am just overwhelmed (Is there a stronger word than overwhelmed?) by how far he’s come – And I KNOW I’ve said that before at different stages of his development.  But it’s worth repeating.  This kid is just amazing and despite his “pop-up” anxieties and his bad attitudes at times and his ability to test ALL our patience, I am blown away by him in positive ways every single day.  Ways that he cannot even comprehend.  And ways that his current teachers would never be able to appreciate.

 

I don’t know what made Jay develop and grow the way he has.  I get asked that question quite often.  There is no 1 magic trick.  I do believe in our case, it was a combination of:

His parents realizing early on that he needed help and being willing to seek out that help.

His parents not accepting the dire predictions that we were given and constantly looking for the “right” people to be on his team.

The fact that his teachers have been incredibly supportive, creative, understanding, nurturing and positive from the beginning.

Genetics.

Consistency and love and encouragement from family/friends.

His own determination and drive.

 

And here is where I tie back to the last post again.  We still have challenges.  There are still tricky things to navigate.  I still get stressed and worried – but things are ok.  Good even.

My friendships are strong – and for that I am beyond grateful.

My credit score is the best it’s ever been.

Ace having his own cell phone hasn’t caused any real problems.

I do still need to make myself a dentist appointment.  *shrug*

We’ve done quite a lot of good travel.  Some as a family (yes, I finally got the kids passports renewed) and some just Shaunie and I as a couple (that’s important too).

The knowing continues.

There will be moments of darkness, but there will also be light.  It’s not easy, but this is life.  One thing at a time.  Do what you need to do to maintain your own mental health.  Just hang on through the rough patches and make sure to recognize and enjoy the beautiful moments when they come.

 

 

 

*Jay is the name we use on the blog. His teachers had used his real name.

*An IEP is an Individualized Education Plan which allows students to receive special education services.  For more info, please let me know.

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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 ………….

 

DON’T POISON YOUR KIDS TO “CURE” THEM OF AUTISM. April 30, 2019

Because Apparently THIS Needs To Be Said.

 

I know I said I wasn’t going to be posting here that much anymore but then I got a message from someone I knew in high school and … well, here we are.

 

In the initial message this former classmate of mine tells me that his son has autism and he’s been researching autism reversal through diet and detox.

I see the words REVERSAL and DETOX and every alarm bell in my body goes off. I don’t want to be rude though and I really don’t want to get into an argument so I kindly respond that based on what he has said, we are not on the same page regarding our ideas about autism so basically let’s just agree to disagree and keep it moving.

 

He felt the need though to respond with a You Tube link that was supposed to convince me that biofilms were the cause of my kids problems and detoxing him using BLEACH either orally or as an enema would cure him.

 

FFS!!!!

 

Anyway, I’m still trying not to be rude at this point so I send a very quipped response to let him know that I am already familiar with the person in the video and I think what they promote is dangerous.  The end.

Did he reply yet again?  Yup, sure did to say that while not all people will have their autism reversed, it has been shown to work on some and improved the quality of life of many others. He tells me his son has gastrointestinal issues and he thinks it’s related to the autism and it’s possible this detox would fix it all.

 

This is where I kind of lose it and go off. Not in a rude way, but in a lengthy way.

I let him know in no uncertain terms that people like the woman in the video he sent me are evil and they prey on an already vulnerable section of the population who are so desperate for help they will try things that are actually abusive. That makes them the worst of the worst in my book.

I give him some actual trustworthy information about autistic people. I tell him that there are a number of disorders or diagnoses that co-occur in autism at higher than expected rates. I tell him that these coexisting conditions may either be treatable in their own right or may influence the long-term outcome for the person. I stressed to him that when there is a focus on the diagnosis of autism, it is possible to neglect other diagnosable/treatable conditions and that this happens at a higher rate than we probably realize.

I encouraged him to get additional testing if he’s concerned about his sons medical condition – SEPARATE FROM THE AUTISM.

I laid out my case for why medication or taking any supplements or restricting a diet should be carefully planned for and thought out and supervised by a real doctor who is up to date on real science; not some quack who stumbled upon a get rich scam while touring the jungles of South America.  Not by some quack who in more than one country has an arrest warrant out for him, regarding the poisoning and DEATH of several people. Not some quack who would have you bleach enema your child to the point where your child could need a colostomy bag. Not some quack who tells you that the nausea, vomiting, diarrhea, liver failure and severe kidney damage caused by his proposed treatment are proof that the solution they are selling you is working.

 

It’s been a few days since this interaction and I still am quite shaken by it; mostly because I feel bad for the poor kid.  I totally understand why some parents get desperate.  I know it can be hard.  But no matter how hard it is for the parents, it’s still our job to protect our kids and not to make things even worse for them.

There is no quick, easy, fix. There is no cure. There is only, get your child the help they need to be their best; physically, academically and emotionally.  There is do the best you can to provide your child with a good quality of life in whatever way you can.

There is so much good research out there. There are so many therapy options and communication techniques available that are worth paying attention to. What works for one person won’t work for another so I am not here to tell people to follow the path we have followed but I can say with certainty that poisoning the autism out of your child is NOT the way.

 

 

 

Oh, and no, after I sent that last message, I haven’t heard back from him.

 

A New Journey April 23, 2019

Filed under: Uncategorized — The B Side @ 9:39 am

It’s been quiet over here lately.

That’s mostly because:

  1. I no longer feel compelled to journal the everyday happenings in my boys lives. To be honest, things are going pretty typically for 11 and 12 year old boys.  That’s a good thing.
  2. I don’t think MY everyday is all that exciting. Anything cute or funny that comes up is quite easily captured in a short Facebook post.

 

You don’t get rid of me THAT easily though.  And in fact, now you get 2 of us because Shaunie and I have decided to partner up and blog about our adventures in vacationing. Yes, the boys will make appearances but they won’t be the stars of the show anymore.

 

Our first post is up and running and I’d very much appreciate it, if you’d click over there and give us a read and a follow.

https://guesswhere.home.blog/

 

I am not taking down the Jay Train / B Side.  I may pop back in from time to time if something comes up so if you haven’t yet, please still follow here so you can get notified if a new post shows it’s face.

 

I have LOVED this corner of the internet for 8 years.  My boys have grown up here.  Just look at my profile picture. Can you believe that in a couple of months that BABY will be in middle school and next year Ace will be in HIGH school?

To every single person who ever reached out with a kind word or commented with a suggestion: I am forever grateful to you.  I will cherish the things I have learned and the friends I have made. Your support altered my life. That is NOT hyperbole.

So … This is not goodbye, it’s more of a “lets cross the street and check out the view from over there”.

 

But for real though, click –> HERE <– and help our new blog to get going.  😊

Pretty please – and BIG thanks!

 

XOXO always, Deenie

 

My Wish April 2, 2019

One of the things that I often tell my children is how important it is to choose good friends and to be a good friend.

I know for now they don’t “get it”; but I hope that my repeated focus on it, seeps into their DNA and sticks.  My friendships are and have been a critical factor in my ability to get through life in any sort of graceful or healthy way.

 

A couple of weeks ago, we had one of our first really nice weather days since the start of Spring.  Ace, Jay and another friend were outside playing.  The boys wanted to bring their Nerf guns outside to have “an epic war”.  Ace asked because we’ve had “the talk” with him.  That one that the parents of white children don’t have to have.  The one where the rest of us have to tell our black sons about racial bias and perceptions.  The one where we have to warn them to be careful because they may not be assumed to be innocent children playing games.  If any of you doubt the truth of that statement please let me know.  I’ll point you towards some stories.  They are plentiful.

 

Below is a conversation I had with someone who has been a very dear friend to me for 25 years.  We mostly joke around, tease each other and share funny meme’s back and forth, but I knew that if I shared something that was in my heart, he’d step up – and boy did he deliver.

(Me: Right aligned ; Him: Left aligned)

 

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I hadn’t mentioned it in my texts, but in addition to Tamir, I was also thinking about the shooting of Charles Kinsey.  Kinsey was taking care of an autistic man when he was shot by police, while lying on the ground with his arms in the air; his disabled client was sitting next to him.

 

Any time my boys step out into the world they each face dangers beyond what many other boys face.  Watching them grow up and become more and more independent is too wonderful to explain.  I marvel at them.  But, I worry about them.

Their blackness isn’t ever going away.

Ace’s ADHD and associated poor impulse control or social awkwardness isn’t going away.

Jays autism isn’t ever going away. 

Those things unfairly put them at risk – YET – there are times when I must let them face the fire.  I can’t let them see all MY fear.  I do want them to be careful.  I do NOT want them to live fearfully.

 

My friend wished for his loved ones “Time, health and courage.”  Those are great, but I think my main wish for my boys and all my loved ones: To have people in your life with whom you can be real and honest and true and loved anyway.

We can make all the money, or plans, or take all the precautions in the world, but in the end the only thing we can be sure of – when the chips fall – is our own truths and the honesty with which we lived our own lives.

 

 

 

 

 

 

Supporting Their Dreams and Date Night February 25, 2019

I love “the arts” but I am no good at doing most arts and am only passably creative. I also am not good at technology. I can hardly ever even get our TV to turn on. So of course, I was blessed with kids who are into both those things. Jay is my creative and my artist … and Ace is my STEM kid. (Meaning he’s into Science, Technology, Engineering and Math.)

 

I know a lot of parents who try to make their children into something they are not. Often, parents try to live out their own dreams through their children. I try really hard not to be that way. I mean, I’d love it if my kids were naturally really good at sports or were super talented musically – because that’s what I always wished for myself – but those are just not their gifts. As parents, Shaunie and I are constantly looking for ways to support each boys specific interests.

 

A couple weeks ago we tried a thing for Ace. It seemed like he and that group would be a good fit considering the kinds of activities they do but it was a giant fail and pretty much a waste of a Saturday. It happens. At least we had gotten a free day trial so no money went down the drain.

 

Last week, I took him to another thing. This time around there was no free trial. If you wanted to do it, you had to sign up for a 6 week program and pay up front. Once he found out about it, though, he REALLY wanted to go and so we took the plunge.

It was a HIT and he can’t wait to go back.  And so I won’t mind at all driving him there every Friday and busying myself for an hour and a half while he lives his best life with other like-minded kids and adults who know their way around a computers 0’s and 1’s.

 

Following his class, we got fast food and went home to sit on the floor and watch a TV show that only the 2 of us (in our house) are interested in. While Ace and I were at home having our fast food and TV date, Shaunie and Jay had gone out to dinner and to see a movie.

 

I want both boys to know that we will always do whatever we can to nurture their dreams but it’s a little harder to find artsy things for Jay. Ongoing, art classes for example, are not really a thing – at least not any that we’ve found in our area. Shaunie has found something though and we’ve signed him up; so in a couple of weeks he’ll get a chance to spend a couple of hours with HIS kinda people. The kind who can draw and paint and who want to learn about brush strokes and shadowing. I truly hope he loves it.

In the mean time, we’ll keep our eyes open for more art/comic book writing programs he can be a part of and we’ll keep having Mom and Son date nights whenever we can cause those are pretty sweet.

 

Unscheduled Fun February 15, 2019

We have a lot of fun together as a family. We go to trampoline parks and to shows and museums. We plan beach vacations and camping trips and in the next couple of weeks we’ll be going to the circus. It seems though, that having unscheduled fun with the kids is getting rarer and rarer. You know what I mean by unscheduled? The times when you don’t have a plan but you end up building a fort out of sheets and pillows or making funny hats for stuffed animal toys. The regular – free – EVERY DAY fun.

Now that the boys are 11 and 12 (gasp!), our “at home” time often revolves around making sure that all the things that NEED to be done, get done. The dinner and the homework and the chores. Whatever extra time there is, gets used up with me binging Netflix and them playing video games.

I know that one reason for this is that building forts and making play-doh pies just doesn’t cut it for pre-teens. But I also think lazy parenting is another reason. I’ve been at this parenting thing for 12 years and I’m tired. Tired physically yes, but also tired of putting legos together and pushing trains on tracks.  You parents of older kids remember all the “floor time” you used to spend.

When you have a new baby, everything is so exciting. You want to spend every minute with them. Teaching them and watching them and exploring with them. You love going to the park and pushing them on swings and you love hearing them giggle when you play peek-a-boo. You’d do anything for that giggle. You absolutely love feeding them pureed green peas and seeing the mess they make and you marvel at the green poop that follows. After a while though, you begin to love getting back to yourself. You don’t love your children any less. Not one iota. But you love that your children can now entertain themselves and make themselves sandwiches. You love that you can roam the Target aisles in peace and don’t have to spend any time looking at stupid transformers that cost too much for the 10 minutes that your child will actually play with it even though they are telling you that they NEED it and will for sure this time play with it for eternity.

 

How much together time is the right amount? I want us to be close. I want our bond to be strong. I want the boys to have a joyful life full of sibling and parent interaction. I want ME time.

 

I don’t have the answers. I am playing this all by air. I will say though that last week, Shaunie and Jay baked some cinnamon rolls together. It was nice. Also one day last week, I put my phone down, my feet up and Ace read me a story. It too was nice.

 

Then this week, Shaunie had to go to New Jersey on some family business. On Wednesday evening, Jay and I sat together and assembled candy grams for his class for Valentines Day. While we were assembling, we talked. Just he and I. We don’t get that a lot. With one Mom gone, the remaining 3 of us ended up having a slumber party in my room. We are not a co-sleeping family so this was a real departure from the norm. Plus, it was a school night. (What?!?!) It was such a hit that we did it again last night.

 

I really hope that we’re getting it (mostly) right. I hope we’re not being too hard on them; but pushing them enough. I hope we give them enough of their own space; while not making them feel alienated. I hope we force them out of their comfort zones often enough to spark an adventurous spirit; while honouring their own, specific, interests. I hope we enforce necessary routines; while allowing for (and even encouraging) flexibility and spontaneity.

 

Do all parents feel this way? How do you guys manage it?

 

When the alarm went off this morning and Jay rolled over to me and snuggled for a couple of minutes, I knew I had made the right call in agreeing to the “sleepover”. It was just so delicious. But sometimes the answers are harder to decipher; especially when they tell you that all they want to do is have electronics time.