The Joy of Routine and the Agony of School Delays

Holy S.  (Except I am saying the real word.)  This is what I am muttering, under my breath as Matthew’s van pulls away at 10am this morning.  We woke up to about 4 inches of snow, which in CT means a 90 minute delayed start of school instead of a snow day.   Holy S.   This morning feels like I have been through 10 hours of intense, yet unsuccessful behavior training.   Holy S.  Our morning routine is off, so Matty is off.

Routine.  Many of us crave it.  Some can’t operate without it.

Matthew requires routine.  It’s what keeps his world safe and happy.   He always knows which day he has art, gym, library and music at school before school even starts (he dictates an email to his new teacher each August to ask).  He knows Kathryn’s schedule, too, which is great because he reminds her to return her school library books on time!  His first grade teacher once told me that the Spanish teacher entered the classroom for her weekly Spanish lesson with the class.  Everyone, teachers and students included, were getting into the lesson and Matthew kept saying, “but Senora, today is Tuesday, we don’t have Spanish on Tuesday”.   Guess who was right?    Senora left and went next door to the correct class.

He loves predictability, structure and routine.  If the plumber comes over on a Tuesday after school to fix a sink, Matthew will certainly ask, “is he coming next Tuesday, too?” 

So, once we read the email about the delayed opening of school at 6am, all bets were off for a smooth morning around here.   Matthew was nervous, anxious, and those feelings generate difficult behaviors and poor choices.  I literally can’t leave him alone in a room.   His impulsivity mixed with anxiety makes it impossible for him to make good choices.  I turned my back to check on Kathryn and he was flushing the hand soap bottle down the toilet (hence, the plumber visiting our house a lot, so he might very well be back next Tuesday!).  When I went outside for one minute to shovel the small patch of snow that was outside our door, he thought that would be a good time to find my car keys (my mistake for not having them in my pocket) and push all the buttons opening my hatch back.   These are just 2 examples of many more that made my morning feel like a marathon of unsuccessful behavior training.

It is in these small, intense moments that I am in pain.  I feel like a parenting failure.  Why won’t he just listen/stop touching/sit still/pay attention/follow rules.  He is 9 ½ years old, not 2.  But the real pain is when I allow myself, for a brief moment to think about the future.  Will he still be this impulsive in 5 years?  Will I still have to follow him around when he’s 18 to make sure he isn’t touching a candle or running out into the street? 

In December, Matthew had lots of new routines that he enjoyed.  Our holiday lights were on a timer and went on precisely at 4:05pm each afternoon.  Starting at about 4:00, on any afternoon in December, you will find Matthew perched by the front window, waiting for those lights to go on.  And when they turn on every day at 4:05, he cheers and claps like he just won a million dollars. 

On Christmas Eve, the service at our church started at 4:30.  We knew we had to leave our home early to get a seat, but we had to time it around the lights magically turning on at 4:05.  The car was running in the driveway, we were all sitting in it bundled up, waiting for the lights to go on so we could pull out of the driveway. 

Here is Matthew before (anticipating lights going on):    

                                

 And the pure joy after:

                                  

Predictability.  Do you know what got us through the non-structured three days at Christmas time staying with Nana and Papa at their house?  Along with the dedicated help from Nana and Papa, and Deb, Ken, Doug and Erin – this clock.  

                                  

Every hour it played a different Christmas carol in Nana and Papa’s kitchen, and Matthew was perched next to it starting at 55 past the hour, just waiting for it.  This clock gave his day some structure.  He could count on this clock to sing a song every hour.

And these street lights:

Random picture of the street lights
in front of my parents' house.

             

Each morning they turned off by dawn and each evening they turned on at dusk.  Matthew

sat by the window and just watched until the street lights came on (or turned off).  He

wouldn’t dare miss it.  It’s his routine at Nana and Papa’s.  It’s what makes him feel

safe and happy.

Safe and happy.  Don’t we all want to feel this way?

Matthew has taught me there is goodness in routine.  When I am rushing through a meal, like tonight at dinner, he reminds me after a few bites, “Mommy, we forgot to say our dinner prayer,” and then he says one so beautifully.

Part of his routine as we say goodbye to each other every morning on the van is, “I love you mommy, you’re my favorite mommy.”  So even though I was muttering “Holy S” after the difficult, unsuccessful morning, I am reminded how lucky I am to be his mom.  (And lucky that it was just a 90 minute delay and not a snow day!!)

Matty and Papa watching the street lights turn on last summer.

Keep Right, Except to Pass

The left lane, the fast lane, the passing lane.  My daughter, Kathryn (age 7), is in the left lane – I knew the day would come when she would pass by her older brother, Matthew (age 9).

Matthew takes the special needs van to and from school.  He has been riding this van since he was 3 years old when he started special needs preschool.  He loves it – it’s small, air-conditioned, and usually a grandparent-aged, kind and caring driver talks to Matthew and answers his repertoire of questions during the 5 minute ride to and from school.  Driving in the right lane of course.  Kathryn – she rides the big yellow school bus, zooming down the left lane with the other neighborhood kids.

 

The following is a sampling what I hear from Kathryn on a daily basis:

•          “Matty – first put your head through this big hole, then put your arms in here – good, you did it!” (This is what it sounds like when she is helping him get into his pajamas).
•          “Matty, say ‘lake’.   Good!  Now put a ‘B’ in front and say ‘Blake’.   (She is a natural speech therapist – trying to help him say a classmate’s name correctly).
•         “Mommy, why can’t Matty ride his bike?  I can ride mine, and he’s older than me.” 

It is happening right before my eyes – Kathryn is surpassing Matthew.  In every way – physically, socially, emotionally, academically - she is light years ahead of him.  She has become his “little big sister” which must be a confusing place for a 7 year old.

Both the left lane and the right lane are leading to new places.  She is moving on to do what girls her age do – play dates, sleepovers, the yellow school bus, Brownies, after school activities, riding a two-wheeler.  He is moving on to new opportunities, too – TOPSoccer (soccer program for kids with special needs), Unified Sports (a division of Special Olympics), and a new “social skills group” started last week.

Is Matthew aware that his younger sister has passed him by in the fast lane?  I think he is aware of the obvious and visible things like how easy it is for her to ride her bike, have a play date or a sleepover, or the fact that he watches her leave on the yellow school bus each morning while he waits for his van.

For me, it’s painful to see Matthew left behind in the dust.  Oh, Kathryn is a great sister.  She doesn’t mean to leave him in the dust - she is just doing what she should be doing.  Growing up.   He is growing and changing in his own ways – but his ways are unexpected and unpredictable, while she travels the road of expected development.

I want to make sure we celebrate Kathryn’s accomplishments but I don’t know how to do that without feeling like we are leaving Matthew behind.  Meanwhile, we celebrate Matthew’s accomplishments so easily (just last year when he learned to zip his coat at age 8 – I think we had a party!)

It is difficult to straddle the right lane (Matthew’s world) and the left lane (Kathryn’s world).

Both lanes are bumpy.

The difference is, we can somewhat picture where Kathryn’s left lane will end up.  She will likely go to college, get a job, move out and move on to adulthood.   We have no idea where the right lane leads. 

Why Worry Now?

Yes, he is different.  Very different.   Yes, he shakes and flaps 

when he gets excited.  He asks wacky questions over and over again.  Yes, he is inappropriate in just about all social situations.  No one knows what he will do or say next.

The excited flap (notice the moving hands)!

 Yes, it hurts my heart to see same aged peers pal around with each other at the pool, take part in swim team practice, play in tennis matches, do the things that 8 and 9 year old boys do.  All the things my boy will not ever do.

When I get to this gloomy place in my thinking, next, my mind wanders to my list of worries – which change by the day.  Today they were as follows:

•       Is Matthew swallowing the piece of leather from the car seat cover he just chewed off? (I hope he spits it out)
•       How long has that piece of poop been on his rug, and did the babysitter notice it today?  (probably – gross!)
•       Will he lock himself and the babysitter in his room?  (most likely)
•      Is his camp calling because he had a seizure (no, the call was about a behavioral issue – thankfully!)

These worries, they drag me down.  But then, I will go someplace with Matthew, like tonight, to “burger night” at our pool.  I see how many people there truly enjoy Matthew for who he is. My heart swells when I see the joy he instantly can bring to others.   I watch him interact with friends of all ages – I think to myself – this boy who has me worrying so much -  he is actually taking others’ worries away just by being himself.   

Yes, he is fun.  Yes, Matthew draws a crowd.  Yes, people want to be around him because he makes others feel good.  His warm smile, his big heart. 

His heart is truly amazing.  The love he has in his heart, it knows no bounds.  I recently injured my big toe, the result (hold your breath) is my toenail fell off.  Have you ever seen how gross a toe looks without a toenail?  Especially a big toe?  It is disgusting.  So, this afternoon, Matthew got home from camp and I was letting my toe breathe without a band-aid.  It was the first time he’d seen my nail-less toe.  Immediately, in a concerned voice, “Mommy, what happened, are you OK?”  And then, without delay, “I know what will make you feel better,” and he gets down on his hands and knees, and kisses my big, dirty, disgusting nail-less toe with his sloppy, wet kiss.  I am simultaneously freaking out at the germ situation while admiring the pure love he has in his heart, to kiss that freaky looking toe of mine. 

Then, I have to ask myself, “What am I worrying about?”  Because this kid, he’s got the big stuff figured out.  

Matty, hanging out at the pool with his warm smile and huge heart!

Counting Blessings getting a little “Preachy” in my New Language

I realize that in the world of disabilities, we are quite fortunate.   Matthew can walk, he can talk.  He wears underpants, not diapers.  He has seizures, but we are lucky - his seizures are successfully controlled by medication.   He has apraxia of speech, a profound speech disorder that made it very difficult for him to learn to talk - but with time, intensive speech therapy, patience and the right mix of speech therapists and speical education teachers, he is talking!  He became verbal at 4 years, 9 months -it was a true miracle to us.  He has low muscle tone - meaning he is floppy, uncoordinated and most likely will not ever learn to ride a two-wheeler.  He has autism, which makes his brain function differently from mine.  He processes his senses in a way that is very difficult for me to understand.  He has sensory processing disorder, and we have learned ways to give him sensory breaks when he needs them.  He is learning to tell us when he needs a sensory break and specifically what he needs - sometimes a heavy blanket, other times a "press" (picture joint compressions), a quiet room, music or to be outside.  He is learning to read and has ideas that he wants to write.  Holding a pencil and writing is difficult for him because of his low muscle tone and dyspraxia, but he is able to get a few sentences/ideas written on the computer.  He is Matthew - he is our son - we are lucky!

                          

 In the world of disabilities where I now reside, I have learned to speak a dialect that I didn't even know existed.  I now speak it fluently, and would like to share some of the most important rules with you.

My son is not "an autistic boy".   He is a "boy who has autism".

His friend is not the "down syndrome boy".  He is the "boy with down syndrome".

You are not the "skin cancer man".  You are the "man with skin cancer".

My friend is not "the left handed woman".  She is "the woman who is left handed".

We are all People First.  The language examples described above show how to speak in the "people first" manner of speaking.  The idea is to put the person first, not the disability.

If you are interested in reading further about People First Language, please click below.  Now that you are aware of this way of speaking, you will notice rule followers and those that need to learn about People First Language.  Please educate them!!  Pass it on!

http://www.inclusionproject.org/nip_userfiles/file/People%20First%20Chart.pdf

http://www.familytofamilynetwork.org/parent-resources/people-first-language

                   

Another language rule is:  there are certain words that should not be used at all.  One of these words I used as a young girl in the 70’s and 80’s to describe something that I thought was “yucky”.  Today, it is known as the R word.   

“When you use the R-word you never know who is listening, it could be someone with a disability or someone who has a family member with a disability. Even if no harm is intended to people with disabilities, the R-word hurts.

Vocabulary develops over time, and it will take time for you to eliminate the R-word from your own vocabulary. People with disabilities and their advocates understand that. All we ask is that you become more aware of the R-word and replace it with something new – maybe ridiculous, silly, outlandish or bizarre.”

Quote taken from:

http://www.okddc.ok.gov/r_word.html

Party Time?

I am a party girl.  I have always loved going to parties, planning parties, and receiving invitations.  When I became a mom I thought it would be exciting and fun, but in a different way – to go to kids' birthday parties with my baby. 

Then, the one-year-old parties began.  Many of my friends had babies born the same month as Matthew, so we were going to a lot of parties around the time Matthew turned one.  

Many noticeable developmental milestones are happening as babies turn one.  Most one year olds are almost walking (some even walk independently by age one), they respond to their name and may even have a few tricks to impress others (“show me your head”, “where’s your nose?” etc).   

 

                                               

Matthew’s One Year Old Piture.

We used this on his party invitation!

It was at Matthew's first birthday party when I began to feel differently about parties.  We were sitting in a circle in our family room with our music teacher as the party entertainment.  There they were.  All the one year olds – my friends’ children - standing, clapping, some even walking - while Matthew tried to roll on the ground.  It was a rough reminder, on my guy's special day, just how behind his peers he actually was.   Sure, we have been together with these peers all throughout his first year.  But somehow, being in a room full of peers in my own home helped me to fully realize the huge discrepancy in development.  This is so NOT fun.  I had to smile on the outside, but felt so sad inside.  Why was my baby not able to sit, stand or clap?  Would he ever be able to do these things? Why are these things so easy for other kids to master?

           

(Here we are at the party.  That is me in the yellowish shirt, and M is laying on his back in the middle of the circle, looking at the music teacher who is wearing a black shirt and jeans.  Many of my NY friends and their adorable kids are in this pic).

In kindergarten, Matthew was invited to a classmate's birthday party. We pulled up to the house, and there were no other cars there - it did not look like a party.  I double-checked the invitation, and yes, I had the right house, the right day and the right time.  So, we started walking up the driveway and I saw a mom of one of Matthew's classmates walking out of the house.  She warmly greeted us and said, "The boys are inside, have fun at the party, Matthew!"   Feeling confused about why she was leaving, I asked, "Where are you going?" She answered "oh, to do a few errands, the party isn't over till 2 o'clock".   My heart sank, "This is a drop off?"  It never occurred to me that people actually drop their children off at parties - since that was not a possibility for me to do.

We went in to the party and I explained to the parents that I would be staying.  The birthday child's parents were welcoming and kind.  I had a lump in my throat the size of a tennis ball.  So, THIS is what 5 and 6 year old boys can do?   They play together, interact, they are forming actual friendships.  The kids played games that Matthew had no interest in and couldn't keep up with. The kids stared at him as he flapped during moments of excitement (he loves singing the Happy Birthday song and watching people blow out candles, so there was a lot of flapping going on there), and I noticed when no one wanted to sit next to him.  For me, it was heartbreaking on so many levels.  I could not wait for it to be over.   

We were the first to leave.  I was emotionally drained from putting on a happy face for the past 2 hours.  Once I got Matthew safely buckled into his seat and the car started, I felt the hot tears streaming down my cheeks.  I took a few deep breaths and I heard from the backseat "That was fun, Mommy!"  WHAT?  Matthew had fun at the party?  This is all that should matter, right?  

I am learning from Matthew everyday.  His positive attitude is contagious.  Last Sunday we were at a birthday party, and although he didn’t really participate like his peers did, he found his way to feel happy and enjoy himself.  He wanted to serve the kids their cake slices (like a waiter).  He genuinely loved bringing each child a slice of cake.  We had to leave the party early (parties are too long for him), but we all left happy.

  

All of this reminds me of a small plaque I have in my home.  I first came upon these “rules” when I was pregnant with Matthew.  Go figure!!

                                              

The Play Date

Matthew was about 18 months old.  It was one of those nights where the overwhelming thoughts would not stop entering my mind.  He was getting the "full service" from early intervention with physical therapy, occupational therapy, speech therapy and special education services all 2 - 3 times per week.  I was confused, scared, and looking for answers.  Would my boy ever walk?  Talk?  But what was on my mind that night most of all was, if Matthew never learned to talk, how would he ever make friends.

It was time for a complete melt down.  I remember sitting in my kitchen telling my mom through my tears and into her drenched shoulder, "he will never have any friends."  I was picturing my boy lonely and isolated forever.  My mom's response was, "there will be some very special people out there who will want to be his friend".  These words comforted me in the moment, but I could not really imagine it.

Fast-forward about 7 years.  Last month.  Matthew really wanted to have a play date with his classmate Ava.  I have met Ava's mom before so I knew she was really approachable and has always been respectful and understanding towards Matthew.  So, I do it, I send an email asking if Ava would like to play with Matthew sometime at our house.  I give about 10 ways for Ava to "get out" of the play date in my email.  Ava's mom calls me back to say how excited her daughter would be to play with Matthew.  Before I know it, we have a play date set up.  Ava will even take the special needs van home with Matthew!

The kids arrive home, and Matthew is so happy, so proud to have a play date.  He immediately has to introduce Ava to our neighbor.  Ava (who is a beautiful, smiley, flexible, and kind 8 year old) goes with the flow of Matthew's afternoon routine.  She knows how much he enjoys rearranging garbage and recycling cans, and rolls the cans up and down the neighbor's driveway with him in the cold for 25 minutes!  

They come inside to have a snack and continue playing, and I realize, Ava really likes Matthew for who he is.  Ava is one of the very special people that my mom told me about that night in my kitchen 7 years ago.

What Time Is It?

What Time Is It?

I often don't know what time it is in my own house.  That is because I live with Matthew, who has a special talent for pushing buttons on the microwave clock to change it.  He also unplugs the digital clock in his room then plugs it in again (I know, unsafe) so he can watch it flash 12:00 over and over.  Recently, he has begun climbing on a shelf in our kitchen to reach the large wall clock so he can rearrange the hands on that.  I look from clock to clock, wondering, what time is it?   While I am fixing the wall clock, he is changing the time on the oven clock!  

Matthew is literally pushing my buttons (on my clocks, phone and on my dwindling patience) every moment of the day.  We try to distract him from doing so by hiding iPhones and iPads in the tallest cabinet in the kitchen - hoping and praying he won't drag a chair over to that cabinet when I am in the bathroom, and double checking, triple checking the digital clock in his bedroom before kissing him good night to make sure that it has the correct time but more importantly that the alarm is not going to go off at midnight because he has pressed THAT button.

It's hard to "recharge" ourselves living in this environment.  I can't recharge my house phone, or leave my cell out to charge while Matthew is home...but most important, it's hard to recharge ME when I live in anticipation of Matthew's next move.  Will he interrupt the washing cycle on our washing machine?  Those buttons are fun to push because they "beep".  While I am in the laundry room, what will he get into?  Let's see, I remembered to hide the phones, the computer is in a good hiding place, I think I have my bases covered.  Nope!  He found the TV remote and is deleting my favorite show, Parenthood, as I exit the laundry room.

As a mom of a child with special needs, I always have to be "on". Remember back when your child was 18 months old and you were exhausted because you had to be "on" all the time - you could not take your eyes off your child because who knew what he would get into next?  What would he put in his mouth?  What would he touch? An electrical outlet?  Poop?  That is what it is like living with Matthew.  No, he is not 18 months old, he is 8.  While his peers are out there skateboarding and learning to snowboard...creating with Legos and going to indoor lacrosse practice, Matthew is...pushing buttons.  

On the bright side, all this button pushing is getting him ready for a future in electronics.  Last week, he found my old laptop hidden away in the mudroom closet.  It had not been used in 2 years.  He asked if he could use it.  Why not, I thought?  I plugged it in, got it charging and discovered there was no icon for the Internet, so I told him it was just for typing words.  Within 20 seconds he said, "Look, Mommy, I'm on Yahoo...how do I get to Starfall from here?"  (his favorite website).  

If you met Matthew for the first time, he would engage you with his warm smile and ask you his repertoire of questions.  While you answered him, he would reach in your pocket for your phone or keys and in a split second, he would delete an app or push the panic button on your car keys.  Watch out, next time he might change your clock somehow and you won't know what time it is!