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.

 

It’s A Birthday January 10, 2019

cuphead bday.jpg

(Cuphead, pictured above, is Jays current fave video game)

 

 

Jay was 3 years old when I began blogging.  He turns 11 today.  Crazy right?

What a wild 8 years it’s been.

There’s so much material I could pull from if I wanted to reflect on how far he’s come.

 

I will instead focus on just 2 pieces of info.

Last week Ace and he had doctor appointments.  Even though he is 16 months younger and about 2 inches shorter, at 70 lbs, Jay now outweighs his brother by 3 lbs.  He’s not overweight at all but we now frequently have to deny his requests to eat MORE (because we know he’s full) and we sometimes have to hide snacks so he doesn’t inhale them all leaving none for his lunch box at the end of the week.  We also had to put restrictions on his school lunch account because he was really over doing it with the giant chocolate muffins they have there.

It is a JOY for me to write that.

You guys KNOW how much of a struggle it was getting him to eat.  You know he used to eat literally NOTHING but cheese doodles.  You know we were so concerned about his nutrition that we had blood work done on him twice in 3 years and tried to take him to an eating disorder clinic but we were denied coverage.  It was a S.T.R.U.G.G.L.E.

He has become a kid who eats chicken and rice, tacos, fish, pizza, lasagna, hamburgers with ketchup, bacon, pancakes, beans, carrots and a long list of other items.  He willingly tries new things on a regular basis.  It’s thoroughly amazing!

 

Two days ago he said to me:

Mom, my birthday is coming up and I know I had asked for a *Robux gift card but I don’t need it anymore.  I got one for Christmas and there’s still $4 left on it.”

That’s him.  He’s not the one to take advantage just because he can.

 

He did ask for something though.  He wanted to bring cupcakes to school for his classmates.  As he put it:  “This is the last chance I have.  I can’t bring cupcakes in middle school.”

 

He’s still getting more Robux and yes, he’s absolutely getting cupcakes at school – and then whatever he wants for dinner.

Happy Birthday my sweet, funny, sometimes snarky, affectionate, talented, stylish, handsome, love bug of a son.  You are a wonder.  It has been and continues to be the joy of my heart to watch you grow.

 

 

 

 

[If you are new to my blog and want to get a feel for how drastic Jays progress has been over the years in other areas, I suggest you read this post from 5 years ago.]

 

*Roblox is a video game that he plays and Robux is money you can use only in that game to enhance your experience.

 

Brag Post November 20, 2017

Back in the day there was a page on an autism blog I followed called the “Community Brag Page”.  This was a place where people could talk about their children’s accomplishments to an audience that truly understood.  I mean, it’s normal to see on Facebook etc the proud parents posting about their honor roll student or their star athlete or the recent MIT acceptance letter.  If someone posts on Facebook that their kid sat through dinner in a restaurant or wore a pair of shorts or played with a neighbor it may seem odd.  To most people, these things are commonplace.

On the community brag page, everyone knew that these things were a big deal.  We all knew that these things that parents talked about had not come easy.  We cheered each other on.

It was nice.

 

This past weekend we went to a 3 year olds birthday party.  There was a face painter and a balloonist.  OK, so they’re not actually called balloonists.  That’s someone who operates a hot air balloon.  I looked it up.  Anyway, at this party there was a face painter and a balloon artist?  Balloon shaper?  A person who makes shit out of twisting balloons.

Jay took some time deciding what kind of balloon he wanted.  If you’re a balloon thingy maker, you are not going to get away with a sword or a dog with my boy.  He finally came up with something; then he sat to wait his turn.

While he was waiting, I could see that preparations were underway to do the birthday song and the cake cutting.

Jay has VERY FEW sensory issues – for which I am grateful because I know they can be debilitating.  However, I know my boy does NOT like the birthday song.  For reasons unknown to me, he reacts very strongly to it.  In the past it would have meant, screaming, crying, yelling – There was even a time where he pulled plants out of the ground.  Yeah, not fun when you’re at someone elses house.

I went to him and quietly told him that I thought they were going to sing happy birthday soon and asked if he would be ok.  He said no and immediately covered his ears and buried his head into my chest.  I asked if he’d like to go to a room upstairs until it was over.  He let me know that he did but also that he did not want to lose his spot in the balloon line.  I suggested that we ask Mr Balloon Man if he could hold his spot because we’d be right back.

And that’s what we did.

We were nearly to the top of the stairs when we heard the first line of the song.  He quickly dove into the nearest bedroom and closed the door.

There was silence.

After a couple of minutes, a smiling Jay said “I think they are done now.”

We opened the door and walked back down the stairs and he resumed his spot in the balloon line.

 

Jay got a balloon robot and in what was a first for the face painter, got his face painted to look like a slice of pizza.

 

All 4 hours we spent at the party were a success – And this is worth bragging about!

 

Not to be ignored is Ace.  I don’t think I ever updated you guys on his report card.  The final result came in and the kid got straight friggin A’s.  There are no words really to tell you how proud I am of him.  Under all the normal conditions this would be worthy of praise but I’ll leave you with this quote from the only “grandfather” they’ve ever known – Because he gets it.

It’s all the more impressive when you consider where he’s coming from.  I mean, from almost having to repeat 2nd grade to straight A’s in 6th grade.  That’s impressive.

 

Now That That’s Cleared Up November 13, 2017

One day last week I noticed a ZERO written at the top of Jays final history test for the marking period.  It might as well have had flashing neon lights around it.   I was horrified and shocked and kinda sad too.

So … I emailed his teacher.

I told her how surprised I was by the grade and that I was concerned about it.  I told her that I had helped him study and that he had done well on the small quizzes leading up to the test so I just didn’t understand what went wrong.  I reminded her that we had a meeting already scheduled so it would be nice if we came to the table already armed with ideas.

 

And … She wrote me back.

She said that she was confused by my email but offered suggestions for what she can do if I think he needs testing modifications.

 

I was less than thrilled with her reply.  Why was she not as concerned as I was?  A ZERO should set off alarm bells.

 

Also … I spoke to Jay.

I asked him what went wrong.  I made sure to tell him that he wasn’t in trouble.  I just wanted to help him.  He offered no useful insight.  He said “I just forgot everything I guess.”

 

This morning we had the meeting and after hearing about how happy he is in school and how much he participates and how well he follows the class schedule and how funny he is and how much they enjoy having him in class and after being told that he had been featured in the school announcements for being the artist of the week, I brought it up … What about his academics?  I wanted to know what they or we could and should be doing to help him to get better scores on tests.

 

After a little back and forth and trying to figure out where each other was coming from it turns out that my boy did not get a zero on his test afterall.  He had in fact gotten 100%.

The zero I saw was the teacher marking the test to show that zero points had been taken away!!!

 

We all laughed at this mis-understanding and I felt a huge relief and then I felt really badly that Jay thought he had gotten a zero when in fact he had gotten all correct.

 

I can’t wait to see him later so I can let him know that it was my mistake and to let him know how proud I am of his hard work and the glowing reports from his teachers.

 

As I said in the meeting, I wish I could take his current report card and show it to his 1st and 2nd grade teachers.  I want to take his report, full of mostly 3’s (B’s) and just a couple 2’s (C’s) and show it to everyone who knew him back when he was crying and screaming all day long.  Everyone who knew him when he was 6 years old and couldn’t write his name or count or sit through one class period.   Everyone who knew him when he had IEP’s full of therapy and accommodations and behavior goals.  All that’s been taken away.  He now has no behaviour goals because there are no behavioral concerns.  No pull outs, no therapy, not even extra time for tests.  His current IEP basically is a one liner that says the special ed teacher will be available as a consultant to the general ed teacher if necessary.  Academically he has the same goals as any typical 4th grader.

 

He still has some things to work on.  Mostly word problems in math and he needs to start reading some higher level books but overall, I’m so happy with all that came out of our meeting.

 

Rock on little homie.

 

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

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

 

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

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

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

 

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

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

 

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

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

 

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

 

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

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

 

Oct 12, 2012My babae brin a pumpkin.

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

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

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

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

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

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

 

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

Dear 2nd Grade teacher,

Hi I am Ace.

I am exsidid.

I am looking forward to have fun.

What dos 2nd grade look like.

 

Love,

Ace

 

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

 

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

 

Team Growth February 27, 2017

On Saturday evening we were trying to decide whether to go to the 9 am Church service the next day or the 11 am one.  We’re not really the best at being morning people so 11am would suit us better in terms of waking up and getting ready but if we go at 9 am then the kids can go to Sunday school whereas if we go to 11am they have to sit with us in the sanctuary.

Decisions Decisions.

For me it’s a no-brainer and the extra sleep wins.  I voted for 11am because as I put it “The kids will be fine.  They did a good job last time.”

Shaunie had a different take.  According to her I frame everything around how much better they are now than they used to be.  So basically, even though we sit in the back just in case we need to leave during the service and we bring snacks and we threaten to take away electronics if they don’t behave and we spend about half of the time shhh’ing them, I count it as a win because we make it through without any yelling or crying – which was not always the case.

She feels like they still have a little way to go and are better off hanging out with the  other kids in a different room.

 

We ended up going to the 11am service.  We made sure the boys were well fed before we left home.  We gave the behavior speech.  We let them bring toys.  I packed snacks in my bag.  We sat in the back.

 

For a long time I avoided going to Church altogether with the kids because it was just too much to handle.  Due to their disorders, (ADHD and Autism if you are new here), I could NOT leave them in Sunday School while I sat quietly in a different room.  I also could NOT bring them to the main service with me because they could NOT sit still or be quiet.

Making it through a Church service has not been an easy road for us.  We’ve had to leave after only being there for 10 minutes.  I have been known to leave Church services in tears.  We’ve been given plenty of mean looks.  I’ve had my kids crawl under pews and between peoples legs.  They’ve dipped their hands into the wine cup during communion.  They’ve gotten into arguments with other kids in the Sunday school room.

Yesterday, Ace only dropped one Lego piece which had to be retrieved from the floor two pews in front of us.  Jay excitedly waved his $1 in the air that he puts in the offering plate but so what?  Only one time did Ace ask, “How much longer?”  Jay ate Oreos.  They both shook hands during the greeting of the peace and before you know it, we were on our way home.

 

I think everyone would agree that it was a successful outing.

These things don’t happen by accident.  They happen because you keep pushing yourself.  You keep trying.  You keep growing and getting better – Sometimes very slowly.  You fail a few times (or most of the time) but you go back anyway.

 

There’s debate in school administration over whether to rate students based on their growth in an area or their proficiency on the topics.  I suppose it’s safe to say I am #TeamGrowth.

Proficiency, of course, is the goal, but we’ve got to recognize and celebrate every little bit of growth and use that growth as motivation to keep pushing us forward.

 

Bed Time Conversation January 26, 2017

 

We don’t have an elaborate bedtime routine.  It’s something like … “Guys, go brush your teeth”.  They do it and then each one turns out his bedroom light and gets in his own bed.  I give each one a kiss (or a few kisses), wish them a good nights sleep and sweet dreams and I leave.  The next time I see them is the following morning.

If you are thinking … “I can’t believe she doesn’t do bed time stories.  It’s so important for kids to read.” let me just say that my kids read a lot, mostly in the evenings before bedtime.   They are not allowed electronics during the week unless it’s for a school related project so they read to me while I put away clothes and they read while I wash dishes.  Sometimes they choose one bed to lounge on and read to each other.

 

The other night though I lay down on Jays bed and we had a little chat.  He’d come home upset and I wanted to understand what had happened and do what I could to make him feel better.

*Disclaimer* I don’t know how to play kick ball or what it means to be good at it or what’s involved in getting “out” or if that’s even what they call it when you are no longer in the game.

*Useful info* Gabby is a stuffed toy rabbit that Jay has been carrying around for a week now.  Gabby is treated like a human.  She does homework and gets her teeth (fake) brushed and she “eats” dinner etc.  I don’t know … Just go with it.

*Ed Note – especially to parents of non verbal kids* Jay took a long time to begin speaking.  He is now 9 years old and we’ve only been able to have these kinds of conversations for about 2 years.  My mind is still blown by it and I am still in constant awe of how far we’ve come.  My online friend Jeneil is just now having conversations with her teenage daughter (via typing).  Don’t give up on trying to find a way to communicate with your child; whether it’s verbal or through a device.  Communication changes the game!

 

 

Hey baby, why were you so upset today?

 

Because I wanted to be great.

 

But what happened?  Were you playing a game?

 

Yes and I wasn’t a good boy.  I couldn’t play anymore.

 

What do you mean?  Were you not listening?  Did you get out and have to wait your turn again?

 

No.  I just kicked it.  I wanted to play again and I got in trouble and I wasn’t a good boy.

 

What were you playing?

 

Kickball.

 

Oh.  And did you get out and that made you mad?

 

I just wanted to be great and I wasn’t great.

 

Well, I’m sure you’ll have a chance to play another time and maybe it will be better next time.  Maybe you just need more practice. 

 

(Pause)

 

Friday is Gabby’s birthday.

 

OK cool.  What are you going to do for her? 

 

Bees on a cupcake.  She really likes bees. 

 

Bees?  Where did that come from?

 

Not real bees.  Just fake bees.  She likes that.

(Pause)

Mom, do you know what homophones are?

 

What are they?

 

They are words that sound the same but they have different meaning.  Like be and bee.

 

Ahh.  What else? 

 

Well, how about there and their.  I learned that.  When I was a toddler I didn’t want to go to school that first day but now I love school.

 

I’m so glad you love school. 

 

(Pause)

 

I was a baby?

 

Yeah.  Everyone starts out as a baby.  

 

How did I get born?  Did I have to get birth?  

 

I had to push you out.

 

You pushed me out?

 

Yeah I did. 

(Thinking:  PLEASE don’t ask me anything else.)

 

Will I be a Mom?

 

Well, women are called Moms, men are called Dads. 

 

So.  Will I be a Dad?

 

Maybe one day when you are a grown up if that’s what you want.  Do you think you would like to be a Dad?

 

Yeah.  I can be a Dad.  I can be a policeman or whatever I want. 

 

That’s right.  

 

What would I have to do if I am a Dad?

 

Well, when you are a parent you have to take good care of your baby.  You have to keep them safe and make dinner and take them to school and all the things I do for you.  But you don’t mind doing those things because you love them.  

 

But I will be a teacher.  My students will listen to me.  I would like to be a teacher when I am adult.  

 

I think you’d make an excellent teacher.  

 

(Pause)

 

When I am adult will I have to get rid of my toys?

 

No, not necessarily.  You can get rid of what you like and keep what you like. 

 

I don’t want to get rid of them.  I love my toys.  

 

Well, as you get older your interests might change.  You might want to get rid of these toys and get different things. 

 

We will see.  Right?

 

Right.

 

It’s important to get rest. My body needs rest. 

 

Mine too baby.  I’ll see you in the morning ok?

 

OK. 

 

Do you feel better?

 

Yeah.  I feel better.  Tomorrow I will not be mad.  

 

I love you.

 

I love you too. 

 

Jay Jay (Which is a title influenced by the Tom Tom GPS system. Hey, it is Throw Back Thursday) January 19, 2017

So, this is where I force myself to write about something palatable.  Otherwise known as, anything that doesn’t rhyme with Detsy TeDos.  (I am willing to have off the air conversations around that topic.)

 

Writing in general helps to calm my nerves and clear my mind so that’s what I am going to do today in the hopes that it will help.

Since I was kind of desperate for a topic, I initially set out yesterday to write about how I have made the decision to cut out french fries from my diet.  I love french fries.  Nothing goes better with a chicken sandwich or Chick-Fil-A nuggets than fries.  AmIright???  But deep fried carbs are not a particularly good idea for my hips.  I was even going to throw in that I have been forgoing the elevator at my job and climbing the three flights of stairs.  Baby steps people.  Baby steps.  I am no health nut or exercise enthusiast.

 

But then … Something happened this morning that I want to write about it.

Here’s what happened.

Usually Shaunie drops Jay off at his before school program.  I drop Ace.  (Well, I don’t drop him.  I drop him off at school)

Today, however, she didn’t have to go to work so I was responsible for dropping both kids.

As I was pulling around to where he usually gets delivered, Jay started telling me that I was not to go that way.

I ignored him and kept driving.

It was early and dark still and there were no other cars on that particular road and no real reason for me to follow the route that cars typically follow when there’s a trail of cars doing drop offs.  I MAY have gone “in” an “out” parking lot entrance because it’s easier.  Maybe.

So anyway, I assumed that’s what Jay was protesting.

He wouldn’t let it go.

No Mom. Don’t go that way. That is not the way. Go where the buses go. That is not right. You have to go the other way.  Nobody goes that way. You need to go another way.”

I parked, told him to get out the car – He was still protesting – And we walked to the door where …….. There was a big sign pinned up telling us that they had temporarily relocated to  a different area.  

We got back in the car and Jay basically said “I told you so.”

Then before I could say anything to defend my self – I’m not sure what I would have said but I don’t like to be wrong – He said “I will be your GPS.”

My son, who I didn’t even KNOW had not only *grown but was now *proficient in telling left from right proceeded to guide me to the correct location.

Turn right here.  Not this one.  Right.  Right.  Left.  Now stop.  This is where you take me.”

 

I was able to safely deliver my boy to his care takers and go on about my business and start my day feeling good about all the things that he learns that have nothing to do with me.  I drove off feeling incredibly grateful to all the teachers and therapists and aides who educate him in ways that I often am not acutely aware of.  I felt so happy that he is able to attend a wonderful local public school that is properly funded and whose Special Education dept is fully supported, where the laws around IDEA and FAPE are understood/enforced and whose teachers and principal think in creative ways and use innovative tools to cater their lessons to each students learning style because they truly want to see ALL OUR KIDS succeed.

 

 

If you understood what I did there then {high five}.

 

 

 

“But, Thank You!” December 15, 2016

A few years ago we spent Christmas in Philly with my long time friend Angel.  Ace unwrapped his gifts from her and was delighted to get the exact toy he had wanted and neutral on his new outfit.  It was to be expected.  He was 7 years old and toys are preferable to clothes at that age.

Jay also got 2 gifts.  The toy, I remember, was a Danny Phantom action figure and motor bike.  Back then, 5 year old Jay wasn’t at the point yet where we could ask him what he would like and get an answer so all gifts were best guesses.  He was not at all pleased with his toy.  That was fine with Ace who was a fan of Danny Phantom so he kindly took over ownership.  To make matters worse, for Jay, he opened his 2nd box only to discover that he too had gotten a new outfit.  Well, he threw it across the room and said “That’s not a present. It’s just clothes.”

At the time, we were so happy that he was saying ANYTHING that we didn’t get mad at his rudeness and fortunately Angel totally understood and thought it was actually funny.

 

~*~

Back in September, we found an amazing tutor for the boys.  She comes to our home twice a week and works with them one on one to help them with their school work and study techniques etc.  The boys actually look forward to her coming.  Earlier this week she came over for her regularly scheduled session and had totally, unexpectedly, brought gifts for us all.  (We had a gift for her too).

Ace opened his gift first and was overjoyed with his candy and new book.  He hugged her big and told her how it was his favourite book series and not only that, but this particular book, was on his favourtie topic.  That’s a little bit of an exaggeration but he was happy and she was thrilled.

Jay opened his candy and his book and solemnly said, “I don’t like it, but thank you.”  Then he too gave her a hug.

He went on to congratulate himself by saying, “That was good right?  Even if you don’t like something you should still say thank you.”

We all got a good laugh and told him that yes, he had done a great job of being polite and he may end up liking the book after all once he read it.

I don’t know about you, but this counts as major progress in my book.  Thank you very much.

 

What’s Wrong With Him? October 12, 2016

 

Ignoring the stares and comments from strangers used to be a daily occurrence.  People had a lot to say about the behaviours they saw from Jay in the early years.  At first it was really hard.  Every look put me on edge and every judgmental word made me cry – Then my skin got thicker.  I became a master at focusing on him and what I needed to do to help him, instead of them.

Without me noticing it, the need for the thick skin slowly faded.  His tantrums have all but disappeared.  He has become more and more able to regulate himself and function in a mainstream setting.

I got comfortable.

Nowadays we sit back gleefully and soak up all the positive reports we get from school.  We grin and get all the good feelies when people who know us see how well he’s adjusting and working his way through life.

We brag about his sense of self and his unwavering support for his brother.  If Jay has your back, he really has your back.  Trust me, you want him in your corner.

Plus, he’s just so darn cute.

 

When he goes to martial arts class – we see him through parental eyes.  A year ago he would have been unable to handle that type of setting.  The bright lights and loud noises.  The physical touching and demands to perform, to wait your turn, to be crisp and sharp and to remember routines.

When he’s in class we see him thriving.  We see him learning the moves.  We see him getting stronger.  We see him trying really hard.  We see him HAPPY and proud of himself.  We share the videos with family and friends.  They all cheer for him and share our excitement.

When he’s in his martial arts class the joy bounces off him.  He loves it there and it’s magical.

It’s obvious that this child is a super star and that he deserves to be praised and celebrated.

 

 

Then one day you are reminded that everyone is not in your bubble.  You make the mistake of forgetting that not everyone sees him through the same lens that you do.

They don’t see the amazing, over-comer that you see.  They see just another kid.  They see him running too fast or his arms moving too erratically or his coordination not being quite as good as the other children.  They see him smiling too widely and laughing too loudly and being a little too silly.  They wonder out loud,WHAT’S WRONG WITH THAT KID?”

They don’t know they are witnessing a miracle.

 

I’d love to shrug it off and say it sucks for them.  That it’s their loss and their life would be richer if they could really see him.  Really see him.  But the truth is that no matter how much you try to convince yourself of that, it hurts.  You wonder if you should say something to defend your kid.  Shout at them.  Calmly educate them.  Or should you just ignore it.

How dare they dampen your joy.  How dare they put a nick in the awesomeness that it is to see your child shine.  How dare they assume to know anything about where we have been and how far we have come and what our story is.  How dare they wonder about what it took for us to get to this point.

No, hearing those questions doesn’t erase all the work or minimize the achievements, but it does make you stagger.  It feels like a kick in the gut.

 

In the end, you sit there, swallowing bitterness and fighting the urge to lash out.  You let your kid finish his lesson.  You give him a huge hug when he runs over to you at the end of it; delighted with his performance.  You hold his hand tight, and your head high, as you walk past the same people who were wondering what was wrong with him.