A Long Weekend with autistic kid.

funny-quotes-check-liver-light-this-weekend

July 31, 2016.  Well it finally rained, for a few minutes, briefly relieving the drought we have been experiencing, and while the humidity continues to press down on us, it is almost comfortable outside, thanks to a steady breeze and some shady spots.  It is the mid-summer long weekend here, with the civic holiday falling on Monday, tomorrow.  And instead of looking forward to that extra day off, I am feeling sorry for myself, and not just because it is an extra care-giving day that I have to get through.  Every long weekend, every statutory holiday, every March Break, I feel like I have been permanently cheated.  While most people get to enjoy their long weekends, or at least choose how to spend them, I have to work, and it is usually challenging and not much fun.  I feel bitter because through no fault of my own I am “not eligible” for the short breaks that most people take for granted.

Before you get your tiny violin out and start playing it just for me – I am not looking for your sympathy, I just want to vent. I do have respite.  I work 4 days a week, and  I have Fridays off to do my errands, complete chores around the house.  On Friday I have no disabled autistic kid to occupy me 24/7, no teenage boys, no husband, for half the day.

The four work days, they are actually the easy ones.  I like the challenges, the stimulation, and I especially like the feeling of control I have over the outcome of my work.  Any parent would agree that raising children does not typically offer that particular reward.  What is so great about workdays?  Here are a few points for your consideration:  I have a desk job at a Not-For-Profit.  I  get to sit down with a cup of coffee sometimes.  I don’t have to be constantly on guard for possible escape due to gates or doors having been left unlocked.  I don’t have to be forever vigilant of what noises are coming from the kitchen:  the sounds of the fridge being raided, the muffled MMMMM of face stuffing, the clatter of cupboards, the crash of dishes, the whoosh of the kitchen sink left on, slurping sounds of somebody drinking fetid water from a dirty pot in the sink.  I don’t have to double check to see if anybody has wiped after using the toilet, or whether something other than excrement and toilet paper has been put into the toilet prior to flushing.  Sometimes at work it is quiet.  At work there is nobody in my office constantly perseverating vocal nonsense (usually), nobody standing 6 inches from my face repeating over and over “car ride, car ride, car ride” until it actually happens out of desperate need for peace.  I don’t have to concern myself about the potentially not-so-robust construction of my newer home while my 250 lb 15 year old son, cognitively aged 2 and in a rage, jumps up and down with all of his size slamming the walls and floor.  The fits of rage that occur in the workplace are sublime in comparison to the outbursts at home.  So if you don’t mind, I just want to complain about long weekends in general.  Especially summer long weekends, those “in my face,”  anything but lazy-hazy days of summer that that I have had to forgo.

So what is the point of complaining?   Why bother?  Because something has to change.  If every person had long weekends like mine, there would be rebellion.  Ignoring the needs of challenging persons and the hardship faced by those involved in their perpetual caregiving cannot be ignored for much longer.  We spend how many millions on refugees, on foreign aid?  Worthy things, but not when we cannot afford to help our own most needy!  People with disabilities matter.  Their families matter too.  We need some support.  We need affordable day programs for kids, youth and adults, programs that run 7 days a week minimum 8:00am to 6:00pm, that are oriented towards those individuals that are too square to be pounded into the round hole of society, and that allow the caregivers to have a chance to make a living and live their own lives.  Reliable, affordable, accessible, day programs have the potential to enable families to survive, and ensure community participation for the disabled.  These programs need to have at least some public support because they are expensive to run (think liability insurance), and a private for-profit or break even model  for personal gain-minded entrepreneurs is not feasible in all but the largest urban centres.

I dream on my long weekends that some day our elected representatives will put their money where their mouth is, and actually deliver integration, not just for those who are a little bit quirky, but for all.  I dream that, instead of just the window dressing, the carefully wordsmithed vote buying PR, somebody actually takes grasp of the problems and attempts in good faith to solve them. I dream that some day our government will rediscover and hear the voices of the grass roots, the folks in the trenches who cannot purchase a ticket to the fundraiser, who live the reality that people at the decision-making table do not, or can no longer understand.

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A Message to the Province of Ontario

difficult path

I respond to an article from the Oakville Beaver, MAY2016:  Improving autism services for children and youths.  My comments are in CAPS and bold.

Oakville Beaver

There are approximately 40,000 children and youths in Ontario with Autism Spectrum Disorder, and prevalence rates continue to rise. (THERE ARE ALSO ADULTS WITH AUTISM.  WHAT IS THEIR PLIGHT IN ONTARIO TODAY?  WHAT CAN OUR CHILDREN AND YOUTH EXPECT WHEN THEY REACH ADULTHOOD, ESPECIALLY THOSE WHO HAVE NOT HAD POSITIVE OUTCOMES TO IBI OR ABA TREATMENT?)

Despite our government’s annual investments of $190 million the current system isn’t meeting the needs of families seeking programs more intensive, integrated, and flexible to meet their changing needs over time.( CONTINUED FRUSTRATION FROM PARENTS BEGS THE QUESTION – WHO IS AT THE DECISION MAKING TABLE?   IS IT THOSE WHO CAN AFFORD A TICKET TO THE FUNDRAISER?  FAMILIES STRUGGLING IN THE TRENCHES ARE NOT BEING HEARD, AND THEREFORE ARE UNABLE TO POSITIVELY INFLUENCE POLICY AND FUNDING DECISIONS, DECISIONS THAT COULD ULTIMATELY SAVE $$)

That’s why we’re investing an additional $333 million over five years to improve and expand autism services.  (THROWING AN ADDITIONAL 66 MILLION/YEAR AT A “ONE-SIZE-FITS-ALL” POLICY AND RELATED PROGRAMS DOES NOT ADDRESS THE NEEDS OF FAMILIES)

It means that more children and youths with autism will receive support at the right time and services better matched to meet their individual needs. (YES – THE LITTLE ONES GET EARLY INTERVENTION FOR 2 YEARS.  AFTER THAT –  WHAT IS THE PLAN?  IT IS NOT JUST ABOUT THE WAIT LIST FOR SERVICES.  IT IS ABOUT THE PLAN.  WHAT USE IS ABA FOR THOSE WHO DO NOT RESPOND TO IBI? 

Under our new Ontario Autism Program (OAP), families will have easier access to services and shorter wait times.  (YOU MEAN, YOUNG CHILDREN  WHO ARE FORTUNATE ENOUGH TO BE PROMPTLY DIAGNOSED WITH AUTISM  WILL NOT HAVE TO WAIT 3 YEARS FOR IBI)   

More children will have access to early intervention services sooner. (A KERNEL OF TRUTH UPON WHICH YOUR GOVERNMENT HAS STAKED ITS PUBLIC RELATIONS )

And that means better outcomes for our young people with autism. (FOR SOME – BUT NOT FOR ALL.  WHAT ABOUT THOSE OTHER KIDS WHO DO NOT RESPOND TO 2 YEARS OF IBI?  IF A CHILD DOES NOT RESPOND TO IBI, THEN HOW WILL ABA, A LESS INTENSIVE TREATMENT, MAKE A DIFFERENCE? )

Services will be expanded across the spectrum for all children regardless of age (AS LONG AS WE CONTINUE TO MAINTAIN THE OPTIMISM THAT SUFFICIENT FORCE WILL ALLOW A HAMMER TO DRIVE A SQUARE PEG INTO A ROUND HOLE).  

And, contrary to misinformation spread by some, no child is being removed from services. In fact, 16,000 more children will receive the critical services they need each year through our improved and expanded program.( umm I THINK IT IS you WHO HAS MISINFORMATION! – IF YOU ARE ON THE WAIT LIST THEN YOU ARE NOT RECEIVING SERVICES – IT IS THOSE WHO WAIT FOR SERVICES THAT ARE IMPACTED BY YOUR LATEST ANNOUNCEMENTS)

As many families have told me, we are very well-served by ErinoakKids Centre for Treatment and Development, the lead autism service provider for this region. (YES WE ARE FORTUNATE FOR THEIR PRESENCE IN THE REGION – HOWEVER ERINOAK REPRESENTS FIRST AND FOREMOST – ERINOAK!  THEY DO NOT PUT AHEAD OF THEMSELVES, THE CHILDREN OR THEIR FAMILIES)

The world-renown organization is Ontario’s largest children’s treatment centre and a lifeline for so many families in our community. (YES THEY ARE – BUT THEY LET GO THE LIFELINES WHEN THE GOING GETS TOUGH, BECAUSE THERE IS INSUFFICIENT LEGISLATIVE GUIDANCE FOR THE LONG TERM PROTECTION DISABLED PERSONS)

With $163 million in provincial funding to help build a new-state-of-the-art centre in Oakville — featuring specially created autism facilities — ErinoakKids will continue to be an excellent partner as we work to improve the lives of children and youths with autism. (A GOOD THING – BUT THE NEEDY AND THEIR LONG TERM NEEDS MUST BE AT THE BASIS OF THE SERVICE DELIVERY MODEL.  MONUMENTS ARE JUST MONUMENTS AND THEY CAN SYMBOLIZE ACHIEVEMENT OR INADEQUACY – DEPENDING UPON THE SENTIMENT THAT UNDERLIES THEIR ESTABLISHMENT.)

PS – I would be happy to assist the multi-Ministries involved in the care of disabled Ontarians to better understand the needs of those least amongst us.  I have a PhD in the school of hard knocks, and I put that up against any professional, any time.

— The Hon. Kevin Flynn is the MPP for Oakville and the Minister of Labour for Ontario. He has been the MPP for Oakville since he was first elected in 2003.

 

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Autism Home for the”HOLIDAYS”

 

When people ask me “How was your Christmas Holiday”  I put on my happy face and say “Great!”  It is really hard to tell people the truth, that it is actually for the most part, an ordeal for the family.  That perfect storm of sensory overload and off routine,  inevitably brings out challenging behaviours.

Most people find Christmas somewhat stressful and tiring but they can have a rest once the celebrations are over, maybe sit and read a book or enjoy an afternoon nap or a movie at some point during Christmas break. Not so for us.  We have to be constantly on duty, on the lookout for trouble: escape seeking, candle eating, drawer emptying, beverage dumping, sink-clogging, boredom-driven destructive behaviour which if let unchecked evolve into frustration,  tantrums, rage, and aggression.  Holidays are a daily challenge to manage the behaviour, so that these are minimized.

We have a few tools at our disposal,  to help us get through holidays  and breaks.  N loves a car ride, it is a calming activity, and we have spent hours and hours driving him around this holiday  .  Thankfully there has  been little snow this month and the driving has been safe.  My husband does most of the driving, he is an angel to me  so that I can get some things done at home.

The other activity that my son loves is jumping on a trampoline.  He requests jumping every day, and so I decided to take him to the trampoline park.  It was mid Christmas break, Tuesday December 29.

Normally we go to the trampoline park on weekday afternoons when it is not busy.  Yesterday it was a very different scene that greeted us.   The entrance was littered with jackets, boots and shoes, and the lobby was crowded.  Loud music blared as we joined the long lineup to get in.  My first thought – oh oh!   Mega sensory overload!   This could get ugly if N loses it and gets aggressive with me or other people.  But he kept repeating “we’re going jumping, we’re going jumping” and he did not seem phased by the commotion.  So I decided to give it a try.

Another challenge I anticipated with anxiety was the wait.   N does not understand waiting in line.  A typical response would be – run away!  But on Tuesday,  he stayed with me through it.  He did become a bit agitated after about 5 minutes, so he started jiggling to calm himself.  I call him “Mr Jiggles” when he does that.  As his agitation increased, he began hopping up and down, and babbling to himself to self-calm.   I distracted him a few times with “patty cakes” which he enjoys.
ignorant
As always we endure the looks of curious people wondering “WTF”?   They don’t get it.  They observe a big handsome and  healthy-looking youth, whose physical appearance disguises the cognitive age of 18 mon.  On Tuesday December 29, I was not paying the stares much attention.  I was so glad to see that he could hold his own in difficult circumstances, if he wanted to.  He waited 15 minutes in that line!

Just as we arrived at the front of the line, this fat lady who had been at a kiosk registering a waiver of liability abruptly thrust herself in front of us, without explanation, avoiding eye contact with me,  ignoring the entire line behind her.  It was clear that she couldn’t care less about etiquette, let alone notice the developmental disability of the young man immediately behind her enormous butt.  It was ironic, neither individual could wait, but the autistic kid was doing a better job at it than normal stupid.

I met her again, on our way in to the jumping area.  We were going up the stairs to the trampolines when she cut in front of me and N, using the physical force of her enormous booty to check us and make her way ahead of us with her two rug rats in tow.  She lived in a world apart, it was apparent.

Inside the park it was a crazy free-for-all.  The trampoline area was jam packed with crowds of holiday sugar charged kiddies, jumping here there and everywhere.   There were many adults there too, some jumping but most of them were aggressively jockeying for a preferred seat on one of the couches that lined the perimeter.  Once seated the adults turned their attention to their smart phones, laptops and tablets, for a happy reprieve from child-minding.

Maybe I am just jealous, because I don’t get this kind of break.   I am always on high alert, ready to step in when my son crosses the line.  In my hyper-attentive mind I see normal stupid all around me while I must watch each special needs action with great diligence.

N typically will jump on the same trampoline space for the duration, with intermittent rest breaks.  He would not switch it up, jump around the facility, and would not stray from the perimeter.  Yesterday, if he got off the trampoline, somebody else got on it.  Ready at all times to intervene, I expected him to get upset, possibly attack the invader, but he did not.  He just waited for them to go, while staring at them, incredulous of their hubris.  Of course,children could not be expected to understand how to identify special needs and what that means.  But the adults in the room, they might be capable of it.  So where were they?They were too busy talking, texting, surfing to observe educate oralert.

While most of the jump ons were simply random, there was one child in who took it to another level.  She awaited his rest break to jump in and assert herself.  It was her demeanour, she was a tween on a power trip.  I found myself looking around trying to find the face of the parent.  Nobody was looking in our direction.   Nick stood and waited, not getting it and unprovoked by the girl.  And after the second time, we moved to another trampoline.  Once she noticed that he could adjust, she lost interest.   Special needs 2: normal stupid 0 !!!!

I say “normal stupid” with tongue-in-cheek.  I would not label anybody by a single action at this time of year in particular.  The kids are home from school, the holidays are encumbered by extra work, stress, fatigue, and the covert impact of our loss of routine –  these extras can bring out less than the best in all of us.  We are all normal stupid sometimes.   But I have to be proud when special needs shows us up in some small but significant way

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Surviving Graduation with Autism and Developmental Disability

The gym was bustling with people. It was a small gym, and the presence of so many families made it seem overly crowded. Metal folding chairs had been placed in rows facing the stage, and most were now either occupied or claimed by personal belongings. In the front there were 2 empty rows, roped off with ribbons. Those rows were for the graduating class.

The dark blue velvet curtains on the stage had been drawn shut to hide the props that were still hanging in place for the end-of-year school production. A solitary oak podium graced stage left, upon which there was a carefully organized stack of papers, dimly lit by a brass podium lamp. A banner hung over the stage, painted in the school colours of navy blue and white. It said “Congratulations to the Class of 2015”.

We gladly sat at the back, avoiding the frenzy for good seats, and welcoming the anonymity it afforded.

Presently the main gymnasium lights were dimmed and replaced by theatrical lights focused on the stage. In the darkness, the heads of the people in front of us, most of whom I did not know, became simply silhouettes; black cardboard cookie cut-out people. I was staring at a life sized digital audience from a stock image website.

It was our third Grade 8 graduation. It was, our third son. But this graduation was not like the others. The only common thread, no pun intended: the same suit that my eldest wore, and my second son wore, was about to experience it’s third and final public appearance. What charity should I give it too? I was considering several options when the Principal stepped onto the stage and addressed the podium. The crowd fell briefly silent.

“Good evening families! Welcome to the 35th graduation ceremonies of St. Francis of Assisi Elementary school. I am Principal Lefebvre, and it is my pleasure to welcome this evening, the class of 2015! He turned to the side and began to applaud, as a signal to the audience and to the door to the hallway at stage right! The door opened and a beam of light streamed into the darkened gym. Then a disco ball and coloured lighting transformed the room into a dazzling party. Multiple-colored dots danced around the room to the theme music from Rocky. From that open door, the class of 2015 steadily processed into the gym, in alphabetical order, each carrying a mortarboard, each making his or her way to the designated rows of chairs. The crowd was now on its feet, greeting the class with cheers and a deafening applause.

I felt panic creeping up my entire body, I felt my face flushing. OMG this is too much for him. The lights, the noise! I watched with a kind of dread. Sure enough, the procession of students through the open door of light suddenly stopped. There, in the entrance to the gym, stood a familiar shape. I recognized that silhouette immediately. The mortarboard he was carrying in his hands suddenly clattered noisily to the ground, as two hands reached up to plug two ears. Only one sense at a time. See first, hear later. I watched the dark audience heads shift to the right to observe the stoppage. I watched his shadow scan the gym transformed into graduation. The gym did not look like it should. It did not sound normal. He began to back up slowly. Then somebody behind him gave him an impatient shove, and I watched his body shadow reflect the change from confusion to alarm. I sat there paralyzed. To my enormous relief, a teaching assistant hurried to his side to calm the perfect storm of incomprehension, and take him to his seat. The ceremony continued.

Many things went through my mind after that scene. I questioned my decision for him and I to experience a milestone. I realized with a kind of sadness, that I made this choice for me. But really, there would be no graduation, not ever for either of us, and for him the ceremony was just another difficult incomprehensible experience.

Once the grade 8 graduates were seated, the principal spoke briefly about accomplishments and the future. I began to hear the speech dissolve into the voice of Charlie Brown’s teacher. When the crowd began to applaud, the graduates stood and processed to stage right, where they were called by name, one by one, to receive their diplomas. I watched each graduating student move across the stage, accept the mortarboard on their heads and receive a tightly coiled paper diploma tied with a blue and white ribbon. Then there was a shake of hands and an exit stage left. So easy, for those who do not experience that vast Grand Canyon that separates some from any moment.

Presently N’s turn approached. He was now walking in the line towards the stage, holding his EA’s hand, making his clearly audible self-comforting nonsense noise, which I call “Nick noise”. He had no idea what was going on. I did not feel the way I should feel, instead I felt something like terror. I heard the Principal call his name, I felt the pause, I could see the EA gesturing towards the podium, and quietly reminding him what he needed to do. With only a slight hesitation, Nick strode with noisy feet across the stage. He gave the mortarboard to Mr. Lefebvre with a big smile, then started to jump up and down, while flapping his hands wildly and uttering a loud string of jibberish. Murmurs of laughter from the audience, who did not quite know what they were looking at. The principal waited for Nick to stop jumping, then he placed the mortarboard on Nick’s head. Nicks innocent glee turned to confusion, and in an instant, he swiftly removed the mortarboard and threw it down on the first row of graduates. A hush of indrawn breaths and some giggles came from the audience. Nick did not appear to notice any of the reactions of the crowd. What he did notice was – the thing was off his head, and so happiness resumed. The diploma was handed to him, which he snatched and began to spin around and around. He just stood there, stuck, spinning the coiled diploma. I heard a faint voice stage left urging him to come down off the stage. It was my voice. So I stood up. I stood up to do hear what I had to say, but instead of hearing my own voice tell me something I already knew, I woke up. I found myself sitting upright crying in my bed with the sheets tangled around my legs.

It was just a dream. It happened for the first time maybe six months before. It recurred only once but it left me thinking. I could see that N is stuck on the stage, he is forever stuck at stage left exactly where he was 10 or so years ago. The scenery changes, the circumstances move with time and not with reason. The things we can count on to help us through, they change too.

So when the time came, the time for N’s real grade 8 graduation, on behalf of both of us, I declined. I could not put us through something like that. Everybody needs to evaluate their own child, and themselves. To me the most important decision maker as to whether or not to participate in graduation is – does the child understand why a change would be celebrated? Does the child understand the idea of a goal and its accomplishment? Finally nobody should be expected to engage themselves in something that could never possibly be rewarding to them.

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Uniforms – Modified for Autistic Kid

It’s High School time for N.

At our high school the kids wear uniforms.  It is a light tan bottom with a white polo style top– and while I love the idea of uniforms, those colours, for N, translate into “potential daily laundry” for me.

The pants are also problematic because they have a button and zipper fly.  N needs a stretchy waistband to be functional.  Not surprisingly there were none for sale at the annual “used uniform” sale.  I was informed by the school that “adapted” uniforms were available from the uniform store.  Guess I have to buy new.

I went onto the uniform store website to order the adapted clothing.  There was no such product option available online.  OK, fine, I have to go to the store.  So, one hot and humid August morning, I drove to the uniform store, only to find an enormous line of parents wrapping around the building, and no available parking in the parking lot.  In fact, the street was lined on both sides with parked cars as far as the eye could see.   I felt like stopping and whipping out my handy speaker cone for public service announcements:  “Hear yea! – your stuff can be found on the internet: everything is there and can be ordered for pickup or delivery, except for adapted clothing.”  But like complaining, what would be the point?  Instead I went home and made a different plan.

N’s oldest brother has left for university this fall.  His high school uniforms were still hanging around the house.  They were too big for N and so I had planned to donate them to the school.  However I decided that too big was better than too small, for somebody who cannot sew to save herself.

I purchased 1.5 inch heavy stretch elastic from WalMart.  I turned the “too big” pants inside out and stretched the elastic along the waistband, pinning it at regular lengths.  Then I then used my old sh-ty sewing machine to stitch around the circumference of the elastic.  I sewed once around the top of the elastic and again around the bottom.  By the way, if you happen to machine sew over the clasp or button you will break the needle on your sewing machine.  The solution – buy a wide elastic and be sure to sew above and below the normal-people attachment.

The end result is pants that look the same as everybody else’s, but have a secret elastic waistband that is perfect for special needs.  Two sizes too large seems to be the needed dimension.  Less than that – in spite of your elastic you will have difficulty pulling the pants over the butt.  I suggest elastic 1 inch or greater, biggest you can find.

Keep calm and carry on!

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Are Social Events Possible, with a very Autistic Kid?

A few weekends ago, my dad’s long term care home held their annual BBQ.  We had gone the previous year, with N and my mother, and it was a fun event at which  N behaved admirably well.  So when it was time to go this year, I decided to take N along, based on the previous positive experience.

This time, however, it did not go so well.  I still have not given up on the possibility that some day we can take N to a social gathering, where he can manage the confusion and also blend in, if only to feign normal social behaviour.  When I experience a dismal failure, I try to think about what went wrong, how it could have worked better, or ultimately whether similar social events should simply be avoided.

Parties have always been difficult for us and for N.  I remember a particularly kind elementary school child inviting N to his birthday party many years ago at a play gym. I was so touched by the kindness that I said “yes” but I told the family that I needed to come and stay with him to help him manage.   It was hard for me to watch the games they played, like escape-the-lightning (created by multiple balls rolling across the gym floor) which sent the other children running away screaming with delight, but N, who did not understand, stayed in the middle of the gym and was repeatedly “struck” by lightning bolts(rolling balls).  The children were naturally amused and laughed at N who just stood there in the middle of the gym, mesmerized by a rotating ceiling fan high above him.    I ran to him to save him from the lightening strikes, and he reluctantly let me guide him off the gym floor.   We stayed for pizza, even though N at that stage did not know how to eat it (turned it upside down, toppings fell off onto the floor, N took one bite then put the gooey slice in his hair – more amusement).  We stayed for cake and the traditional “happy birthday” song (he was more interested in the candles and had to be physically restrained from shoving his fist in the cake).  Impossible to tell if he had any “fun” at the party.  For N there were lots of stims at the event and afterward.  It was not fun for me, I left feeling like I needed to sleep for a week.

We politely declined all subsequent birthday party offers that followed.

We try and try, and then we reluctantly acquiesce to the reality.  We have to make the day-to-day possible for him, for us, the family.  And so I have decided that such social events must be avoided: if N must attend so that we may attend, then none of us will go.  My son simply cannot cope with sensory overload.  Summer BBQ parties, with their non-routine venues filled with unfamiliar sights, strange people in close proximity, loud music and conversation, strong smoky smells, and heavy summer air dripping with heat and humidity – are altogether more that he can cope with.

This year at the BBQ N was a year older, but much bigger, adult sized.  Cognitively he was still the kid in the gym at the birthday party who did not understand.   Yet he was one step advanced this time: when he could no longer cope with the sensory input, he asked to leave. “Go Home?”  I used my “first-then” story to help him understand that we would eventually leave the party and go home: “First eat, then HOME”.  This satisfied him, but not for long.  When we still sat and munched on our lunches, N began to hop up and down furiously.  He was turning red, and he began to shake.  I recognized a desperate coping mechanism, I knew it would escalate rapidly and I did not have much time to intervene.

I was detained by a family at the next table with 2 small girls who had been watching him with curiosity.  When N began his anxious hopping, one of the girls said to me “what is wrong with that boy?”  Without a chance to respond N came at me, striking me hard with his hand.  “He hit you”  the other girl said with concern.  I replied “He does not understand…”  Quickly I bid adieu to my parents and started to hustle N out of the room.  There was not enough time for a diversion, in the absence of that, I had to get him out of there because the escalation would be rapid and immediate.  Unfortunately I was not fast enough, and he began hitting me repeatedly and with obvious force as I led him out of the party room.

I know that some people were shocked by what they saw.   What they did not see was that I got it under control as soon as we were out of the sensory overload environment.  But the moment of social involvement was a sensory overload disaster.

Are Social Events possible for the family with a very autistic child?  I have become pessimistic over the years.  There are limited and very specific circumstances where N can successfully participate in a social gathering.   If any of the following conditions are not present, then I would not attempt the event with my son:

  1. Familiar environment where N has managed successfully in the past.  Preferably repeatedly.
  2. A quiet place accessible to the him, when he can escape and control/adjust the auditory stimulation in the environment.  (Unfortunately N is not able to work an iphone or ipad with music.  Some families have succeeded with this kind of escape that their child can control  For N it has to be a physical escape from the sounds he cannot control).
  3. Ability to find perceived personal space.  For any social venue, there must not be a perception of excessive or uncontrollable physical closeness. This tends to be more an issue when the venue is indoors.  In this case, this year it poured with rain.  At the BBQ everybody was forced to crowd into a confined indoor social area.  Too many people in a relatively small space spells difficulty for those who have sensory challenges.
  4. A comfortable temperature.  This year the day of BBQ was not just rainy but excessively hot and humid.  The humidity pressed upon the air inside the room, and was amplified by the close proximity of residents and guests.  The windows dripped with condensation,  and we sweated to stay cool.  For N it just fuelled his desire to leave the space.
  5. Visual Stimulation.  Movement of objects within visual field of perception is comforting to N.  I believe he is able to cope with a lot going on visually as long as there are not too many other competing sensory stimuli.  So if items 1-4 are present then N can cope.

It is all about sensory processing.  If it is not familiar, then the child needs to have some kind of control in order to direct attention to one or the other inputs from the senses.  At the end of the day we as parents must assess what our child is capable of processing, and what we are capable of living with in response.

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Five Christmas ideas for an older Boy with Autism and/or Developmental Disability

autism christmas

Christmas gift giving can be difficult, stressful, even emotionally painful, for friends and family of a youth with autism and/or developmental disability. A giver wants to please the gift recipient, and feels badly if the response to the gift is not a happy one. Most kids love presents, then there is N. My son typically does not want to have anything to do with a present. We have to practically trick him into removing the wrapping paper, and often he does not fall for the trick. Many times I end up opening it, and N won’t even look at it. I feel badly for those who went to the trouble of trying to find something N would like. And the truth is, I don’t think he ever will like Christmas, or presents. I think it is important to warn people that they can expect the unexpected when giving N a gift – in a range from complete disinterest to terror.

There are a few reasons for the negative reaction of N to his Christmas gifts.

First of all he does not like surprises and a Christmas present is a surprise in a box covered with busy shiny colourful and unfamiliar paper. A surprise is by definition a deviation from normal routine. A dislike of surprises, even good ones, stems from his need for structure, routine and sameness in order to function. To add to that N does not like the surprise arrival of gift givers at the house. He does not understand the change in his people environment, the presence of family and friends to celebrate the season. We try to prepare him verbally and with pecs, “Uncle D is coming today” but he does not really know why or when. So the arrival of gift givers also can upset him, adding further disappointment for the gift givers. Gift giving is driven by social rules and cultural expectations which N does not understand.  He does not have the ability to show gratitude when he does not feel it. Although, he can say “thank you” if prompted.

Secondly, the sensory deluge brought on by Christmas makes it harder for him to participate.  It is the perfect storm of sensory overload: there are too many twinkling lights, too much shiny paper, sparkling tinsel, decorations, music, scented candles, food smells, trees in the house, people, hugs, kisses, rich food, excitement. It is too much for N to process all the sensory experiences let alone open his presents. For N, Christmas is SO NOT the most wonderful time of the year.

So don’t sweat the gift.  He might not want to open it – that is OK – he will open it later when there is less going on.  He might open it with your encouragement, and then quickly throw it away, or even flee – because of his limited abilities in the circumstances.  It is not that he does not like the gift, but rather he is overwhelmed.

With those caveats in mind I have found a few simple rules for giving presents to those like my son N at Christmas.  I summarize them as the Top 5 Christmas ideas for a youth with autism/DD:

  1.  Less is More.  Christmas will be easier for my son if there are fewer presents under the tree.  With our other kids we try to do “equal number of gifts” because they are aware of who got more and who got less.   They may or may not grasp who got the most money spent on them, but the key is perceived equality so that there will be peace on earth.  N however has no concept of equality relative to his brothers, and no awareness of how much money we spent.  He just does not want surprises, so less is more.
  2.  Focus on Single Sense or Preferred Sense Gifts.  N’s preferred sense is “smell”.  He also now likes smells with tactile properties.  So this year he is getting a collection of hand creams from Bath and Body Works.  Not “cool” for a guy?  He doesn’t care and neither should you, the giver.   What matters is, which sense is most appreciated.  Often it is music.  When it is – then life is easy – give iTunes gift cards and they will love you forever.
  3. Avoid Traditional Toys.  We don’t buy toys for our son based on developmental age.  While he may be developmentally 18 months he is actually 14 years old and it is not reasonable to expect him to want to play with “Fisher Price Go Baby Go Crawl Along Snail”.   I have noticed that there are too many developmental assumptions already built into toys, even for the youngest babies.   For whatever reason, these assumptions are incorrect for my son and I suspect we are not alone.
  4. Simplify.  A bag full of rocks is more interesting than a bag full of riches.  You don’t really need to go shopping for a Christmas present. You have things in your house that would be pleasant for a youth like my son to explore.  You could put a collection of shiny objects from around the house in a shoebox.  What a great present!.
  5. Give Practical Gifts.  A gift that can be related to daily life is more likely to be appreciated than an abstract gift.  So where the other boys on your list don’t want clothes, your autistic kid relative probably would be pleased to find a shirt or pants inside the wrapped box, because he would understand what it is.

Good luck with your gift giving to the autistic youth on your list. Remember – think outside the box, always keep an open mind, don’t judge or take anything personally.  Remember that we all do not see from the same set of eyes and therefore there is no incorrect response to Christmas.

 

 

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Summer vacation with autism

The sky had just begun to pale in the east when we set out. For me it would be a 10+ hour drive to Maine, in a jam packed SUV with four adult sized men. I was wedged against the left rear door, in the back seat with my two youngest teenage boys. The physical discomfort of the journey was a small price to pay, or so I hoped, for a week away.

We had not been to Maine for 3 years. We had not vacationed as a family since summer 2011. But we decided it was now or never, time to risk another trip with autism.

The drive to Maine goes well. Complaints along the way came from the older two “normal” boys, not N. Middle child A, beside me in the rear seat middle, was struggling to find room for his legs, but he found escape from hardship in his iPhone music. My eldest son M was more comfortable in the front passenger seat “shot-gun” in the navigator role. N my autistic teen, sat on the right side of A, and was happy just to look out the window and enjoy the scenery pass by his eyes. It was comforting visual stimulation for him.

As the drive went on N began to realize that something non-routine was occurring, and he began to ask “first car ride, then home?” I replied “first car ride then cottage then home”. This interaction, N’s question and my response, was repeated over and over as the drive continued. It was a bit mind numbing after a while, but there was no hitting or slapping by N the entire trip. When N does not like what is going on, which might include car ride related lack of understanding or somebody sitting too close, he tries to communicate his dissatisfaction by striking out at somebody, usually me. Since this did not happen on either the ride to or from Maine, I considered the travel portion a success.

I was curious if N would remember the cottage. He had been there several times, but there was a gap since the last visit. At first it appeared that he did not remember. When we arrive he stood by the cottage door, refusing to come in. Once inside, he stood by the door and would not take off his shoes (means he wants to leave). Hands were plugging ears, which is what he does in unfamiliar situations, so that he can focus on the visual sense. Go home?” He worriedly repeated over and over. I replied -” first cottage them home”. My patience is tested, but I keep it up. For a few hours.

First night is the traditional “Fishermans Catch” takeout seafood which we always long for. We pig out. N is still anxious but food always does wonders for his mood. At least the anxious first then questions began to subside.

The next morning N is up with the sun, before 7:00am, as always. While the rest of the men snore on, N and I make breakfast in the kitchen. I tell him, “first eat, then pool”. He loves swimming, I thought it would be the best way to get him into a positive frame of mind, and to know that although we were off the routine, there were fun things to do.

They have the perfect swimming pool at the cottage, with a deep end only 5 feet deep. We left the sleeping beauties in the cottage as soon as the pool opened. I think N began to remember, that first morning in the pool. He went in the water by himself. He laughed as he got accustomed to the temperature (a bit too cold for me). He was instantly calmed by being in the water. He stood in the deep end, watching the swirling colors as he moved his hands about, enjoying the sensation of the water. When he is happy, he vocalizes and I had to tell him to swim quietly. His happy sound goes something like this: oyeoyeoyeowowow. Coming from a deep loud voice, it is not exactly inconspicuous.

Soon a young family joins us in the pool. The two young children, a boy and a girl, are quickly in the pool. N watches them from the deep end. They splash each other, and they head towards N in the deep end. N moves away and the boy eyes him to see if he might want to play. Then the father does a cannon-ball beside him. Water goes everywhere. N thinks it is funny and says Ooyeoyeoyeowowow!

Instantly all eyes are on him. The assessment to move back into the shallow end immediately follows. I tell N to swim quietly, but I know he does not see the point. As more people arrive, and there are more happy sounds, N finds himself with most of the deep end to himself. But that suits him just fine. While I wish he could blend in better, it did not really matter. He was happy and for the first time in 17 years I got to sit beside the pool and read a book. That was such a heavenly treat for me! We visited the pool, N and I, every day.

We took N into several restaurants, and successfully. A few happy sounds brought the usual stares, some loud clapping to counteract the din of conversations also brought us some brief unpopularity, but overall, he was well behaved. In fact he was better behaved than his two older siblings, who complained about everything we did: it was boring, it was not cool, etc. N never complained the entire trip.

While traveling with autism is never easy, never a walk in the park, never truly relaxing, I had moments of relaxation on our trip, and for that reason, it was for me at least, a successful summer vacation with autism.

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A success Story: Public dining with Autism

We have had numerous dining fiascos with our autistic son. I cannot tell you how many times I have wished I could become invisible and exit the restaurant, unseen with him. Today, I am glad to report that there is hope for the potential for future public dining for our family.

Just last month something WONDERFUL happened, in a noisy, crowded, unfamiliar, smoky, unpredictable public dining setting. My autistic kid BEHAVED in that setting. FIRST TIME EVER. How possible, you ask?

The event: a BBQ. My dad, who has Parkinson’s Disease, is in a long-term care facility, and last month they had their annual family picnic BBQ. I had to take N with me that day. I would have left him with a family member if that was an option. I knew he would likely not enjoy the BBQ. A popular and well attended event is always flying a yellow flag that only I can see. I go, fully aware that I might have to make a hasty departure, if N cannot cope.

The day of the BBQ it was a beautiful day, there was not a cloud in the sky. When N and I arrived at the home there were quite a few people already there, staking out the indoor tables and outdoor tables in the shade. The smell of the BBQs was thick in the air. There was a one-man-band guy with a guitar and a harmonica, singing and playing his music. N plugged his ears and watched fearfully, making sure that the noise-with-legs object did not get too close to him.

We met my mom and dad there, and found a picnic table with some shade for dad. It was relatively far from the speakers, relatively distant to the food frenzy, safely away from the noise-with-legs. N and I, and dad, waited at the table while mom lined up to get the food. As we waited, another resident and her brother asked if they could join us. I said “yes, of course”. I smiled to hide what I really felt, a sinking feeling….

For the first 15 or 20 mins N stood beside the table, with his hands over his ears. He made small noises to comfort himself. He was anxiously taking in the sights. We encouraged him to sit down at the table. I was expecting him to make a run for it at any moment. However, much to my surprise, the hands released their prisoner ears and soon after, he seat down at the table with dad and me and 2 people he had never met. When mom returned with BBQ hamburgers and hotdogs, and N was sitting calmly at the table.

He sat there, quietly eating and listening and watching, for a long time, for longer than I have ever seen him do. No noises, no stimming, no behaviours. We were all amazed! I was so very pleased. How could this be? Why the unexpected coping with it all. Why was his behavior so much better than anticipated?

The answer came to me some time after the BBQ. We have N in an autism camp that runs Saturdays from September to June. At this camp N goes to a restaurant for lunch every week. Here he is taught how to order food, how to wait for food, how to wait for all the people at the table to finish. How to pay for the food and how to leave. That day at the family picnic BBQ, N read the parameters of the event and decided that he was at a restaurant. So he applied what he had learned from camp about how to act at a restaurant. This was generalization, an unexpected and extraordinary leap of understanding that truly astounded me.

I am of the opinion that it is the repetition of simple, really basic life skills that make the biggest impact on the lives of complex special needs kids and their families. I am blessed to have found a supportive camp that is courageous enough to take 10 to 15 very autistic kids and youth, including my son, into the community to experience repeatedly the social expectations that come along with community living. That experience is wonderful, invaluable, irreplaceable.

Years ago I never would have fathomed not being able to eat at a restaurant. Then I never dreamed that I could ever again eat out, without humiliating apologies, without sacrificing my dignity and self respect. Now I am hopeful that it will be possible to dine successfully in public, once again.

Stay tuned to Lifewithautistickid as we attempt to dine as a family on vacation.

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Special Needs Moms

Found this poem on Pinterest and wanted to share it with you:

You may think us “special moms” have it pretty rough.
We have no choice. We just manage life when things get really tough.
We’ve made it through the days we thought we’d never make it through.
We’ve even impressed our own selves with all that we can do.

We’ve gained patience beyond measure, love we never dreamed of giving.
We worry about the future but know this “special” life is worth living.
We have bad days and hurt sometimes, but we hold our heads up high.
We feel joy and pride and thankfulness more often than we cry.

For our kids, we aren’t just supermoms. No, we do so much more
We are cheerleaders, nurses, and therapists who don’t walk out the door
We handle rude remarks and unkind stares with dignity and grace.
Even though the pain they bring cannot be erased.

Therapies and treatment routes are a lot for us to digest
We don’t know what the future holds but give our kids our best.
None of us can be replaced, so we don’t get many breaks.
It wears us out, but to help our kids, we’ll do whatever it takes.

We are selfless, not by choice, you see. Our kids just have more needs.
We’re not out to change the world, but want to plant some seeds,
We want our kids accepted. That really is our aim.
When we look at them we see just kids. e hope you’ll do the same.

April Vernon

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