Life On The B Side

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

The Sandwich That Was Left February 1, 2017

 

Jay left his sandwich at home and as one would expect – it spiraled out of control and affected everyone in his path like a tornado.

 

At 7:00 am a phone call came in informing Shaunie that Jay had left his sandwich at home and he was already eating his snacks.

Since she was already at work (40 minutes away) and she was in the middle of an audit, she said she was sorry but no she would not be able to go back home and bring it to him.

I was an hour away and it was the last day of the month (my busiest time) so it’s a good thing they didn’t even bother to call me.

Shaunie called to tell me about it and we both agreed that he’d have to suck it up and just get something from the cafeteria.

At 9:06 am, we got an email from his general ed class teacher saying:

Jay came in today with an empty lunch bag and said that he already ate his lunch this morning. I went ahead and had him make a lunch choice (meaning she had him choose something from the cafeteria menu) so that he at least has something to eat at lunch time. I know that his tastes are limited so we’ll see what we can find for him, but I just wanted to let you know!

 

I thanked her for that and continued working.

At 12:30 pm we got another email.  This time from the special ed teacher saying:

This morning, when he was in [his morning program], I  heard him screaming at someone. When I went down to see what was wrong, he didn’t want to say anything. It was clear he had been crying because he had dried tears on his face. I had him come to the resource room to calm himself. He made it to his gen ed class on time but came back saying that he needed a break. He has been in the resource room a few times this morning and continues to say that he is having a bad day. I explained to him that everyone has a bad day and I asked him again if he wanted to talk about it. He just said that he doesn’t want to go back to [his morning program]. I am still not sure what happened because he won’t say. Hopefully he will let you know what happened.

 

I let her know about his missing sandwich and of his gen ed teachers offer of a cafeteria lunch and continued working.

She replied saying:

We offered him snacks from the resource room this morning and that seemed to calm him for a little while. But he came back and said that he needed a break. We tried to get him to eat more but he didn’t want anything else and he said that he didn’t want to go to the cafeteria. I told him that I was going to email you because I didn’t know what was going on. He asked if he had to apologize and I told him no, he didn’t do anything to me. I was just trying to see why he was upset. I hope he has a better night. I am going to check on him before I leave in a few minutes.

 

His teachers are so patient with him and I truly appreciate that.  I know it must be especially difficult on his gen ed teacher when he has an off day.  There is no way that him going back and forth to the resource room is not a disruption in her class.

 

When I came home he was still visibly upset and didn’t want to talk to me and just stood against the wall hugging himself.

I was gentle.

First I asked him if he’d had dinner as yet.

Yes.  Noodles.

Then I asked him to come and sit with me.  I asked him how his day had been to which he of course responded that it had not been a good day.  I asked him to explain why and after going around many circles:  I was upset.  But why?  Because I was angry.  What made you angry?  I was yelling.  Who were you yelling at?  My teacher.  Why were you yelling?  I was mad.  OK, what were you so mad about?  I wasn’t having a good day.  What made you have a bad day?  I was crying.

This is how our conversations go.  It takes time, but we get there.

Eventually after our many circles and him coming up with many reasons (none of which were the real problem) he finally blurted out “I left my sandwich at home.”

I told him that I understood that he was upset and that he had been hungry.  Then I asked him if his teachers had tried to help.  He said yes.  I asked him if they offered him food from the cafeteria.  We had another very round about conversation until after a while, with a choked up voice, he said “But I can’t get something from the cafeteria because it’s not free in there and I didn’t have any money. I can’t just take it.”

 

Now – Truth be told, all along I was feeling more sorry for his teachers than him but at this point you know I felt bad.  The poor kid didn’t understand that even without money his teachers would have found a way to get him lunch and then we would have settled the score later.  Even though they had offered it to him, he still assumed he couldn’t get lunch so he went hungry all day.

 

We hugged it out on the couch and then he went upstairs to write apology letters to his teachers for his behavior.  I knew then that I had my own letter (email) to write.  I don’t expect that he will forget his food again any time soon, but with the help of his amazing teachers, we will come up with a plan – just in case.

 

He closed his day harassing his brother and dancing in our room and went to sleep with a smile and a full tummy.  All’s well that ends well.

 

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“.   

 

So Munch Progress July 14, 2016

One of Jay’s main issues has always been controlling his emotions.  When he gets upset, he gets REALLY upset.  It’s often hard for him to calm down following a meltdown.  He can hold on to grudges for a LONG time.  (Maybe that’s genetic … lol)  Seriously though, if he’s been “wronged” in some way, he has been known to stay mad for hours.  Some kid used his markers.  I (justifiably) yelled at him.  Shawnie pranked him.  Cartoon Network isn’t showing what he wants to watch at the moment.  Ace ate the last gummy bear.  He has been known to go to sleep seemingly happy and then wake up still mad about something that I thought had already been resolved.  He will not eat.  He will not talk.  He will not play.  He is a brooder.

Things are definitely better now than that used to be.  His meltdowns are way fewer and way less explosive and don’t last nearly as long.  We continue to help him come up with strategies to manage his day though.

 

The other day, he was on the laptop working in his current favourite website and he wrote the following and brought it to me so I could read it.

 

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*Spelling fixed but nothing else*

Dear mom. I love you so much. When I said I hate you, do not say that. because that’s not nice. When you get upset, calm yourself down. You can take a deep breath, play something or anything. Me too. I have to listen to teacher, and counselor. if I need help, just tell a teacher or a grown up. 

 

This makes me so happy.  The progress is truly astounding.

 

Apparently Jay had a little rough patch at camp yesterday due to a pottery incident.  (I know because the counselor called).  I expected him to come home angry.  Complaining.  I was ready to hear all about the mug that he made and then decided that he wanted to make a vase instead.

When I saw him, he hugged me hello and went about his business.  He seemed happy and mentioned nothing about the mug, vase, fiasco.  He was more interested in when his grilled cheese sandwich would be ready.  When I couldn’t take it anymore, I asked him how camp was that day.  In his own words … “It was pretty good.  I went outside.”

 

Dude got mad, then went outside to get a breather and calm down.  Then came home happy.

Yup, truly astounding progress!

 

 

How many is 31? October 23, 2015

Ace, Jay and I were in the car when Jay asked “How many is 31?”

Ace and I both replied with “9”.

It wasn’t a script.  Jay was asking a real question and the answer really was 9.

Ace and I knew this because we understand the way Jay speaks and to a certain extent, how he thinks.

He wanted to know how many days there were before it would be Halloween.  (October 31st).

The rest of the conversation flowed easily and both boys skipped happily off to school that day but I couldn’t get the question out of my mind.

How many is 31?

The more I thought about it, the tighter my chest got because this is my worry.  THIS.

How does my son get by in a world where the vast majority of people won’t understand him?  How does he do it every day without myself or Ace to help him?

If he had asked anyone else that question they would have had no clue what he was talking about and it would have lead to frustration and maybe anger.

How many times in a day does he have to go through this?  Over the simplest of things.  How difficult is it for him really?

The ability to communicate is huge.  Imagine for a second what it’s like to not be able to make any of your wants, feelings, pain, opinions known.

Thankfully Jay is no longer in that position.  He can do/say a lot.

But I worry about my boy.

At first glance and even at second glance he doesn’t appear to need any special treatment or extra help or patience.  He seems quite typical.

But he’s not.

I worry about him and how he navigates school and play dates and weekends spent with family and friends on his own.

I am amazed at his ability to adjust.  I am amazed at how patient HE is with US.  How he tries to get us to understand.  How he asks for more details about things we’ve said so that he can understand.

On most days I feel like he’ll be alright.  He’s managed pretty well thus far.  I mean, he’s come SO far.  It’s staggering really.  People who knew him just a couple of years ago would not recognize the smart, sweet, funny, creative, independent, friendly, playful, chatterbox little boy he is now.

But then there are the days that I can’t shake my fears and all I can do is hope that as he gets older and spends more and more time away from me, most of the people he encounters will have a kind heart and will recognize that he needs just a little extra … Time.  Help.  Understanding.

 

I’m Not Mad I’m Sad April 28, 2015

Parents and teachers and therapists of autistic people spend a lot of time working on emotions.  It’s thought that autistic people have a hard time identifying emotions and responding to them correctly.  Now understand that I can only speak for my Jay – And even then I’m speaking for him based on what I can see and how I think.

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The other day I was tired and it was coming upon the boys bed time and I was just DONE.  Jay was at the table working on some artwork.  Lately, he’s ALWAYS drawing or painting or colouring something – And I have the PILES of papers and the dried up brushes and the bits of crayons all over our apartment to prove it.  Ace was watching cartoons.  I told them it was bed time and that they should turn off the TV and put away the papers and crayons.  Ace obeyed (which is only because he had gotten in trouble earlier) but Jay yelled at me that it was “NOT BED TIME YET“.  Then he picked up and threw his Easter Dog across the room.  (Don’t ask. OK do.  It’s a stuffed dog with a pink rabbit ears headband).

I made him pick it up and told him he wouldn’t get any more stuffed animals if that’s the way he was going to behave and then I made him go to bed.  It wasn’t easy.  We both used our outside voices and there were tears.  He literally threw himself in bed and roughly pulled the comforter over his head.  When he was under the covers, I continued to chastise him by saying that his behavior was not acceptable and that he can’t behave that way every time he gets mad.  I told him he can’t get mad every time I tell him to do something that he doesn’t want to do.

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“But Mom, I’m not mad.  I’m sad.

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OMG!  Mad and sad are 2 totally different things.  He wasn’t mad AT me like I thought.  He was sad at not being able to finish his picture.  That’s it.  Nothing else.

He pulled me in for a kiss and I was left in awe of my son.  How many times have I said that I CANNOT BELIEVE how far he’s come.

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His reaction to being sad was not the best one.  It would have been better if he had calmly asked for permission to finish his picture.  We need to work on how he expresses himself but I think it’s fair to say that he can identify his own emotions quite fine – and I need to do a better job of not jumping to conclusions about why he does the things he does.  And I definitely could have expressed MY feelings in a better way too.  Ya know, teach by example and all that. Although for the record, I’m not a “things thrower”. I dunno where he got that move from.

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p.s.  When he’s actually mad he tells me that too – and it’s usually accompanied by him crossing his arms over his chest – so he definitely knows the difference.  Sad isn’t a “catch all” emotion for him.

 

(Mis)Communication December 10, 2014

IMG-20120810-00587

 

He said what he wanted.  I heard what he said.  But I hadn’t looked deeper.  I have found that there is usually a deeper.  Sometimes I need to ask more questions.  Sometimes I need to give him more processing time.  Sometimes I just need to put things aside instead of getting annoyed and being so greedy.

 

As I’m washing dishes Jay comes and asks me for some “juice in a cup” and a “patty“.  (A Jamaican ground-beef filled pastry).  I give him the juice, which he downs, and then I ask him 3 times if he’s SURE he wants the patty.  I know that he spent most of the evening with a big bag of cheese doodles.  Each time he confirms.  I take the last patty we have out of the freezer and put it in the toaster oven to cook.

Half an hour later I give Jay the patty and he says “NoI not want it.”

HUH?

I say to him “But I asked you and you said yes.”

He ignores me and walks away.

I stand there feeling annoyed.

I figure I will leave it on the counter and maybe he’ll come back for it later.

That doesn’t happen and the kids brush their teeth and go to bed and the patty is still sitting on the counter.

I’d had a BIG lunch and I’d eaten dinner so I wasn’t hungry but I didn’t want to throw away the patty and warming and then letting them cool and then warming again isn’t usually good for them.  They get dry.  I just ate the damn thing.  Then got more annoyed at myself for eating something I didn’t really want.

 

Fast forward to Wednesday morning when we’re getting ready for work and school.  It’s Ace’s job to put the kids lunch boxes in their respective bags.  Jay stops him and takes his lunch box and opens it.  In it he sees the sandwich I had made along with his juice and snacks.  He shows it to me and says “But I asked for a patty.  That’s what I said.”

 

*Light bulb*

The night before when he asked for the patty it wasn’t for THAT moment.  He was asking me to put it in his lunch box for the NEXT day.  He didn’t make that part clear and I certainly didn’t think to ask.

 

At least now I know that I need to get less annoyed and ask clarifying questions and definitely not be so greedy.  I bet Jay would have been happier with a slightly dry beef patty than the sandwich … especially since he took the time to actually tell me what he wanted and I actually had it available.

 

I stopped at the patty store on my way home today so I can right my wrong for tomorrow.

 

 

Telling Me June 17, 2013

Filed under: Life on the Jay train — The B Side @ 12:15 pm
Tags: , , ,

There are so many stories from this past weekend that I could tell.  There were a few good stories and one really bad one.

There is no way to tell everything on this blog – nor would I want to.  Sometimes it’s easy to decide whether to tell a story or not.  Sometimes it’s a harder decision.  I’ll do the no-brainer one today.

 

Everyone who sees Jay sporadically comments on how much more he is talking than the last time they saw him.  And it’s true.  He is learning more and more words everyday, but his language pragmatics is still very limited.  He understands way more than his ability to talk would have you believe.  He tends to stick to the same scripts that he has learned – changing up one or two of the words to fit the situation.  Pretty much, he only uses words mostly to satisfy his own needs.

“Can I have, (pause) juice please?”

“Can I have, (pause) i-Pad please?

“Can I have, (pause) eat please?”

“Can I have, (pause) come mummy please?”

He also will answer yes or no questions or things like “What is your name?” or “What do you want ?”

Questions that only call for a one word response.

He will take a stand with sentences like:

No brush teeth” and “All done. Ready to go.

What he will NOT do, is answer questions like “How was your day?” or “What is your favourite toy?” or “What did you eat for breakfast?”

He does not ask many questions.  In fact, I think the only question he asks is “What is that ?”

 

The kid did not talk AT ALL until he was almost 4 years old so I am thrilled with where Jay is at now in terms of his talking.  It has made a HUGE difference in our household.  The number of tantrums are way down and we are in a better position to make him happy and/or comfortable because he can tell us when he wants something or does not want to do something.

 

Because of his communication difficulties, I have spent a lot of time complaining to his schools staff that one of the most important things to me is that they communicate with me about what’s going on. I want to know what he’s doing in class.  I want to know what skills his therapists are working on day to day.  I want to know if he had a bad day or a good day and why.  I want to know how he is getting along with the other children in his class.  I tell them that he cannot tell me for himself so I need them to do it.

It’s been a battle.  He does not have a daily communication log like I’ve read so many other parents have for their children.  I do get e-mails from one of his therapists because I have asked her to keep in touch with me and she’s been pretty good about it.  Also we see his home-room teacher daily at drop off and pick up so she keeps us in the loop about his school life.  It’s not a formal process and I only get as much info as I do because these women are just naturally nice/awesome/understanding people.

 

On Friday, Jay’s class had their end of year school trip to the Bronx Zoo.  They couldn’t have picked a more perfect place for my boy.  I tell you all the time how much he loves animals.  The Bronx Zoo is one of Jay’s most favourite places to go.  If I didn’t know better, I’d say his teacher chose this place for the trip because of her “teachers pet”.  🙂

When I got home from work on Friday evening Jay came running to me and said:

I saw animals at the zoo.”

I almost had a heart attack.  He has NEVER spoken to me before just for the sake of sharing something about his day.

I asked him what animals he saw but he didn’t tell me about any of them without prompting.  That’s OK  though.  Baby steps are still steps forward.

 

That one sentence would have been enough to fuel me for a while but he didn’t stop there.

The next day we were at the park for a BBQ/Fun Day with Ace’s Boy Scout pack.  When we 1st got there, Jay didn’t want to stay with the group so he and CC took a walk.

After some time, they rejoined us and when Jay saw me he said:

I fish in the water.”

 

fishing

(That’s Jay fishing)

 

2 times in one weekend.  2 times he told me about what he had been doing.  2 times he volunteered information for no other reason than because he wanted to share his experience with me.

 

This is amazing and makes me feel so much better about sending him out into the world (aka kindergarten).  I may be getting ahead of myself but it’s scary when you have a kid who is a prime target for bullying and/or abuse and they cannot tell you about their day.  This may be a small step toward him being able to stand up for himself or at the very least, tell someone if something bad happens.