Life On The B Side

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

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.

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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.

 

 

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“.