Life On The B Side

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

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.

Advertisements
 

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
Tags: , , , , , , ,

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.