OPEN!

“Open, Open!!”  This is what Matty shouts each week when he waits for the All Waste Garbage Truck to come and take our trash away.  He wants the tops of the cans to be left open by the arm of the truck.  I don’t know why – it’s one of his “things”.  You can hear him shouting with great excitement, “Open! Open on the grass!” as if he were routing for his favorite football team.  Nope, it’s not football, it’s a garbage can.    

(Here is a 6 second video so you can truly appreciate his excitement - with his happy hops!)

Even when he holds the iPad to watch garbage truck videos on YouTube with his headphones on, we hear him yelling “OPEN, OPEN!” to the trucks in the videos.  (Yes, people do post 15 minute-long videos of garbage trucks picking up garbage cans, and for this I am extremely grateful).

Occasionally, he earns the prize of following the garbage truck on what we call a “garbage car ride” (after great behavior reports from school for a week).  

Sometimes, this makes make me feel like I am missing out – other parents are enjoying shared interests with their children.  They are laughing together at the movie theater or enjoying a sporting event together.  On rainy weekend afternoons, they are relaxing at home putting a jigsaw puzzle together or playing XBOX.   Not us.  Greg and I are taking turns driving around looking for the garbage truck with Matty.

“Just for me, Mommy, he left it open just for me?” I hear Matty ask from the backseat as I drive behind the garbage truck – all the drivers know Matty by name and wave at him when they turn around in cul-de-sacs.   He is practically hanging out my car window greeting the truck drivers.  

“Yes, Matty, he did leave it open just for you.” I respond.  Really, it’s just the force of how quickly the can is dropped, I think, but I can’t tell him that!

“I guess he is in an open mood, Mommy.”  Matty is a great conversationalist.

This truck is doing it right by Matty's standards - putting this can down with the top OPEN.

This is how excited he gets when we actually find the Garbage Man so we can watch the truck pick up a neighborhood’s worth of cans. 

Somehow, Matty’s pure excitement for finding and watching the garbage truck has rubbed off on me.   No, I am not watching youTube videos about garbage in my spare time or yelling “OPEN”.  But his excitement has helped me to see things differently. 

Being Matthew’s mom has opened my mind to a whole new way of thinking.  In my PPL (Pre-Parenting Life), I had such a narrow view of how the world works.   Going through life now, with Matty by my side, my eyes have been opened to new ways of thinking, teaching and understanding the world each day.

The recycling truck driver who drives the garbage route in our neighborhood clearly understands how important open cans are to Matty.  He will lift our cans extra times, give them an “extra shake” till the can is deposited on the ground with the top open.  Yup, just for Matty. 

So, Matty, thank you for opening my heart, my thoughts and my mind. 

Dear Matthew...

"Before you were a parent, what did you expect motherhood to feel like?  And how is it different now that you live in the world of parenting a child with special needs?”

These were questions that I posed to my colleagues last week in preparation for a conference we presented dedicated to parents raising children with special needs.  

Here are some of MY answers – along with a thank you letter to Matthew:

Notice his flapping hands - he is SO excited!

I figured that being Matthew’s mom would include playing soccer or a game of catch in the backyard before driving him to his soccer practices or baseball games.  I didn’t picture that the driving we do together actually has no destination.  Matthew’s favorite thing to do together is to drive around looking for the garbage truck.  I didn’t know how heartbreaking it would feel to drive past those athletic fields packed with other people’s kids playing on teams while we search for the All Waste truck.

Matty at the amusement park this summer - do you think he's enjoying it!?

I thought that being Matthew’s mom would mean summers that included day trips to the beach or an amusement park – I pictured of course, that we’d bring his friends along on our excursions.  I didn’t realize that spontaneous would no longer be a part of my life – it’s all about keeping to the safe and predictable routines now – and that friends for my son to invite to the beach are hard to find.

Stressed out face - vacations are stressful for Matty.

I thought a family vacation to Cape Cod and Martha’s Vineyard would include family bike rides, trips to the ice cream shop, buying souvenirs and relaxing on the beach.  I didn’t know that our family vacation time would be spent divided – one parent with one child at a time -  not buying souvenirs or ice cream in those shops, but rather asking what time those shops open and close each day.   This information is SO important to Matthew.  It gives structure to his unstructured vacation days.   Let’s not forget about finding out what time the streetlights go on at night – this is another activity that brings Matthew great joy and something that I would never imagine doing on vacation.

...and Matty is HAPPY!

Streetlights go on...

I pictured being a parent would mean speaking to my child’s teacher for parent conferences two times per school year, and perhaps a handful of other times.  I didn’t know I would be in  daily contact with my child’s team of teachers and therapists (special education, regular education, PT, OT, speech, school nurse and school psychologist…did I forget anyone?) to touch base about seizures, behaviors, protective holds, educational concerns and modified curriculum.  

Dear Matthew,

Before you came into my life, my view of the world was so narrow.  I was all about the product, not the process - the destination not the journey.  Thank you for helping me understand that it’s OK to drive around without a destination in mind.  That it’s a good thing to just enjoy the time we spend together driving around looking for the garbage truck.    Journey – not Destination.  Part of our positive energy comes from this journey we are on together. 

Our days at the beach don’t have to be filled with friends and social conversations.  Experiencing your pure joy when you watch the ocean waves crash over and over – each wave to you is just as exciting as the first one you saw – sending you into your excited “triple hop” – isn’t that what every mother wishes for?  To see her child so happy that he literally jumps with joy?

Matthew and Nana at the beach.

Our journey takes us to places that are difficult for me – like doctor appointments where new diagnoses are given, school events watching typical peers interact with each other the way I pictured you’d be able to one day, and simply having to admit and accept that I need more help from professionals to learn how to handle your behaviors at home.   Going to these difficult places is necessary, because it’s for you.  I wouldn’t go there on my own – you have held my hand each step of the way and made me stronger – able to take on the next part of our journey.

Matthew, thank you for teaching me to be brave and strong.  To be honest and stand up for you and your needs.   You’ve given me the strength and courage I’ve needed to teach others who are not a part of our journey, what it is like to travel the journey of life with disabilities. 

Thank you – for showing me what is truly important in life – it’s the journey, the process  - not the destination or end product.  Everyday I learn something from you – but the best thing you have taught me is that on our journey, we will continue to get to new places if we both feel happy and loved.   I am so lucky I get to be your mommy.

Love,

Mommy

Feel The Music

 I’m flashing back today  -  to a time when Matthew was 4 and Kathryn was 2.  We were at Kathryn’s music class – a fun 45-minute weekly experience. 

For years, Kathryn was dragged to speech therapy, occupational therapy, physical therapy and various other waiting rooms, for Matthew’s weekly appointments.  So when I finally had the opportunity to do something fun with her while Matthew was at his special needs preschool, I quickly signed us up for a baby music class.  It was so rewarding to watch my baby girl clap along, march in time, reach for the bubbles that Miss Kathye would blow from her bubble machine (a class favorite) and just enjoy the music!  It was such a different experience from those I had with Matthew – where I was always comparing him to same age peers – noticing all the things peers could do that he could not (like walk, talk, participate appropriately).  I actually felt successful as a parent, watching my daughter enjoy the music, play along and do what the other kids were doing.   I felt like I was doing this parenting thing right!

Here we are at music class with the amazing Miss Kathye!

One day we had to bring Matthew with us to class.  I guess Matthew didn’t have school that day.  Taking both kids anywhere at these ages by myself was a true challenge for me (who am I kidding, it is still a challenge today!) which caused great stress.    Miss Kathye started playing her “Hello, How Are You?” song on the guitar, and Matthew was right up there with her, his ear practically IN the guitar.  I was trying my best to give Kathryn the attention she needed and deserved, while prying Matthew off of Miss Kathye’s guitar.  I will never forget Miss Kathye’s words “don’t worry about it, Amy – he’s just trying to FEEL the music”.   Deep breath – the first one of my day - she gets him.   As moms of kids with special needs, we get caught up in the moments – trying to get our kids off guitars, or to stop turning light switches on and off obsessively – so it’s hard for us to see the bigger picture.  He’s trying to feel the music or learn about cause and effect (light switches).  Thank you, Miss Kathye, for understanding my boy!

Later in the class, during a “march around the room” type of song, Matthew pushed a little girl down and she started crying.   Talk about cause and effect, Matthew had to try again (I’m sure he was thinking:  “if I push her again, can I make her cry again?”)  Sure enough, he did it again.  Watching him do this made me so sad, embarrassed, alone, humiliated.  Why is he trying to hurt someone?  Why won’t he stop?  Why can’t I understand my own child?  It was too much for me.  I didn’t know how to handle it – so I had a mini-breakdown.  I grabbed Matthew off the girl  - had tears in my eyes, and didn’t know what to say or do.  (Strange moment for me – I’m a talker).  I knew giving his behavior more attention would cause him to push her down a 3^rd time.  But I couldn’t ignore that he had hurt another child.  Another mom from the class who I barely knew at the time noticed what was going on and in the midst of the marching song swooped over, whispered in my ear “I’ve got him, I’m a preschool special ed teacher, go to the bathroom and catch your breath”.  So I left the music room with Kathryn and went to the bathroom – I cried.  I tried to hide it from Kathryn age 2, as I splashed cold water in my face.  I cried for not understanding my own son, for the pure exhaustion of trying to get him to stop the difficult behaviors, I cried for myself, for not knowing how to handle this moment without crying.  I had to get myself together – fast.  I made it back to the music room and thanked the mom who took over for me with Matthew (what an absolute angel she is).   We made it through class and got home.  I don’t think I left the house with the two of them by myself again for many months.   

So I got home and allowed my thoughts to go to these dark places:

Why can’t I just take care of my own kids by myself?   Why can’t I take them to a 45- minute music class and have it feel like a fun morning?   I watched other moms with 3 or 4 kids successfully go to and from errands, music classes, with smiles on their faces as their kids obediently follow them through parking lots and get into their own car seats.  I thought that was how parenthood would be for me.  It’s not.

This reminds me of the time we went to the pool in my hometown for an afternoon of swimming when the kids were about 3 and 5.  I had my parents, a friend from growing up and myself to watch my 2 kids at the pool (yes, that’s 4 adults for my 2 kids).   While we were there, I ran into a friend’s husband with their 4 kids BY HIMSELF at the pool. I was truly dumbfounded.  How could he watch the 4 kids by himself?  What am I doing wrong that I need 4 adults to watch 2 kids? 

That day at the pool - they actually both fell asleep?  A first and a last time for everything!!

It’s not so much what I’m doing wrong, but more accepting the fact that this ratio is the level of support I need at any given moment to help care for Matthew’s needs.   It’s taken me years to accept this truth.  Perhaps I still don’t fully understand how true it is.

It’s time for me to feel the music – I don’t need to put my ear in the guitar, but I do need to accept the facts.  Matthew needs constant attention to stay safe.  This fact will likely not change over the course of his lifetime.  He needs support to understand dangerous situations.  He needs reminders to stop himself from touching the hot stove.  Everyday.  He needs help understanding stranger danger.  He needs help – so I need help.  Accept the help and be grateful.  Stop feeling embarrassed, sad, alone and humiliated.  Feel the music – the song is the truth. 

 

Feeling the music!
2008

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