COVID-19 is a real health threat

I had to post this, after watching a man on TV explain to the reporter who asked him why he was not cancelling his trip to Florida given the pandemic situation respond: “Well I’m going anyway, because I am healthy and my child is healthy”….(so what if we catch the virus?)

It is not about you, Mr. Airport Man. It is about the safety and well being of others. Don’t travel if/when it increases the risk of exposure to COVID-19, regardless of your good health. Because if you catch it you can spread it to others. Don’t slip out to the beer store if you are ill. Because there are people in the line in front of you and behind you, that have vulnerabilities that you cannot see or imagine.

Stay home.

I really wish somebody got that message 18 years ago when they sent their kid to school with RSV (respiratory syncytial virus), That attitude “it’s just a cold” set in motion a train wreck that had serious life changing consequences. N was 6 weeks old when he got RSV and ended up in the ICU on a ventilator. Then it got worse – scar tissue formed in his airway from the intubation after he was discharged. At 3 months he went into respiratory failure, and somewhere in the chain of events that followed he became deprived of oxygen. Brain damage was the outcome and while mistakes were made here and there I cannot lay blame anywhere. But in my heart I wish that kid with RSV had stayed home.

The problem is, the consequences of ignoring illness and going to work or the beer store, or to school anyway, are rarely visible to the sick individual. The ramifications appear days later, weeks later, often to a stranger. Spreading your illness is simply stealing when there is no possibility of being caught.

My inner child would like to go back in time and inflict my anguish upon that mom and that little innocent kid with the snot that hug from nostril to knee. But that would not bring clarity, nor satisfaction, nor redemption. My empathetic self knows what it feels liketo be devastated.

But what did I do? I wiped the boys nose with a Kleenex, I wanted to help.

COVID 19. All I can do is tell you this story, and ask you to please, please

stayq home.

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Ok – There is more! Monday morning Mayhem

It was a hot Monday summer morning in August.  At 7:00 am the humidity already hovered in the 90% range when I had to open the door to let out the dog for a pee.

I would normally shut the door and wait for the dog to bark before opening, however on a morning such as this one, with such an extreme indoor/outdoor temperature differential, I wanted her to be able to get back inside at her leisure.

At 7:00 am weekdays I normally make the coffee and start assembling sandwiches for lunches, alone in the kitchen, while family are still sleeping.  On this day – my blissful solitude was rudely interrupted by a vision, out of the corner of my eye, of a streak of flesh as it disappeared out through the open door.  Oh naked NO!

I rushed to the door praying silently that it was just a plump mirage that I saw, caused by my drowsy Monday brain.   But alas it was what I feared most – N was standing in his birthday suit on the driveway!  OMG!  My son is not a small guy.  There is no way that he could be called “inconspicuous”!  “Come inside” I pleaded. But like a smart rabbit he was having none of that.  It was little mom vs big N.

Sometimes you have to weigh your options – FAST!  If I head out the door – he could bolt.  If I stay inside – he could bolt.  Decision!  I instantly scrambled to put myself between N and the street before he had a nanosecond to guess what I would do!

“OK N get inside….”  I put my arms out wide like I learned in survival class to make myself look bigger.  N looked at me, then looked at the street which beckoned to him, for some unknown reason, on this morning before he got dressed.  He just stood there – he stood there long enough that I became conscious of the rise of embarrassment over my face.  I could feel it:  somebody is looking right now and thinking “who should I call”?

N made a distressed sound “eh-eh”, to tell me I was just the biggest pain in the butt he ever met.  Then as quickly as he came out, he turned and went inside.  I fanned my sweating face and drew a big breath of relief.  I had visions of chasing him down the street – him, in the buff, and me, in my jailbird PJs.   Could have really ended badly for both of us.

We have 2 sets of locks on both doors. Needless to say, I fastened them both after this awakening.  There is no – “thats all folks” it would seem.  We learn to handle what life throws at us, lesson by lesson.




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Thats all folks!

It has been a while since I posted about lifewithautistic kid.  We, our family, have made many changes, we have adjusted our lives post CPRI, with a new understanding of our son, we are grateful for the support of the Intensive Intervention Program which has finally legitimized our situation to our community.  I have moved jobs, our family has moved houses, and I have spiritually moved on from trying to change the world.   I don’t even want to educate the world any more, because I realize that I cannot change anything:   the only thing I can change/educate/help –  is me.

I have embarked on a journey to find myself after 16 years of disappointment and disillusionment.  I will always advocate for my son but I have decided to abandon any larger visions that I once might have had to educate and create understanding.  Instead – I have decided to dedicate my efforts to my personal fight.  It will be an invisible battle that nobody will hear about or read about on this blog, and it will be my own World War Infinity: getting what my son meeds from an ignorant greedy dysfunctional political system.

To my followers and friends – I thank you for reading and I hope that my posts have given you some compassion and caring for the developmentally autistic amongst us, and the challenges faced by their families.




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Post Intensive Intervention

N came home in January,  about 1 week after New Years.

We came away from intensive intervention understanding N a lot better.  We came back to our life with a knowledge that those who cared for him there, truly loved him and enjoyed him.  And we knew that N loved being there.  He loved home too.  But he was happy in that structured world where he lived with others like him, some higher functionning and some lower functionning, with rotating caregivers who wanted to work with kids like him, and knew how to work with them.

It gave me another perspective on the future.  I have always thought of how grim it was.  I know he will never be able to acquire independence.  He will never read, or write, or tell time, or ride the bus by himself, or handle money, or have a job, or have a conversation with somebody.  I know he might face years of waiting only to have some kind of service less than well conceived to support his life.

But I realize now, there is the possibility of community, and happiness, for N and others like him, if only we, the able-minded and capable-bodied of this world,  can look beyond our own vision of what community means, and be open minded about inclusion, to see creative options for living for our special needs.

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The Respite


You are in a plane. There are no rows of squishy comfy seats, no TV screens, nobody patrolling the aisles to provide for your comforts. It is dark inside this plane, you are sitting on the perimeter along with other persons whose silhouettes line the walls.    Then suddenly a door opens next to you, light and wind streams in, hands grab you and next thing you know you have been jettisoned out into the sky.  You are falling and maybe it should be a thrill or fun but at first it just feels like falling.  That was the trip home after leaving N at the inpatient intensive intervention (II) program.

The night after we dropped N off at II, we sat in the living room in the dark, unable to speak to each other.  We sat there, lost in our own emotional scatter.  There was a clock ticking somewhere in the bookshelves.  I cannot remember when I last heard it. Outside a blustery fall wind shook the leaves from autumn branches.  I rested my head on the back of the couch and listened to the sounds inside and out, and breathed.  And breathed.

I had to adjust, respite was not instant “happy dance” by any means.   There was the worry and shock.  The first few weeks I worried terribly about how N was coping away from home for the first extended period in his life.  I know how essential routine is to him and he was now off it, big time.  I cried more than once, thinking that we could not tell him he was going to be OK and that we would be coming back for him.  There was also the slap in the face which was reality – the magnitude of how my life had been impacted by 24/7 care giving for 15 years was significant.  I felt numb for weeks.

As N gradually adjusted to intensive intervention, and as we came to see that he was doing OK, then doing well, and then was happy in his new routine, then I began to feel relaxed.  I could relax when I knew that they knew him and how to manage him.  By the end of November I dared to enjoy a few things that I had been missing.  I enjoyed my candles in the evenings: normally I have to be vigilant to be sure N does not try to blow them out and eat the hot wax.  One week we went to 2 movies in the theatre, blowing our 5 year movie attendance record (one movie) out of the water!

Some of the best respite- is ordinary moments that everybody takes for granted – like SLEEP!  Like QUIET sometimes, like PEACE and not having to be constantly on the lookout for the next N-inspired mishap.  Like shopping alone, like watching an hour or two of uninterrupted TV after supper without worry about what happening in an invisible part of the house. Like going to work without the anxiety that your working day may come to an abrupt end because you must deal with the inability of the community to manage the extraordinary demands that you have been forced to accept as ordinary.

Today is January 1, 2017.  N has been home for Christmas vacation, and tomorrow he will go back to intensive intervention for the final week.  When I see how he has thrived there, how suited the environment is for severe kids like N, I wish that something like it was available to him here at home, at least for some of the time.  I am grateful for the respite break – wish it was longer,  but mostly I wish we had a plan for the future, something definite, something to give me confidence or hope that N will get the care he needs, and I will get the respite I need.  I worry about the return home, as it feels like we are slipping back under a truck, instead of finding our way.

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Intensive intervention…it begins


N has been admitted to what I suspect is the only inpatient intensive intervention program in Ontario…and he started today, Friday, October 21.

The program is  in a different city about 2 hours drive from where we live.  We have always called his programs “camp” and to differentiate this camp, we called it “far away sleepover camp”.  Thinking that this might not sound so appealing, we changed it to “new camp”. N will stay there during the weeks to come, with visits and home visits as is possible.  The duration of his stay will be several months, depending on evaluation and treatment, and we will get a comprehensive assessment and behaviour plan, and suggestions for his well being and safety.

He is in good hands.  I know that.  Even knowing he is in the best place he could possibly be, this is very hard for me.

Last night I could not pack his suitcase.  I just could not do it.  I got up early this morning and grabbed the list and filled his bag with exactly what items were on the list in the order given, trying not to think or feel.  I did the robot – responding to lines of code in a program written by somebody else.

A 2 hour drive, through a misty rain which mirrored my emotions and then we were there.  I kept my poker face all the way, not wanting Mr. Intuitive to pick up upon my anguish.  He can tell when I am upset, afraid or sad; and he acts like an amplifier – he throws it back at me twice as loud.  We arrived there around 10:00am.

The staff were wonderful – they welcomed Nicholas and the guided us through the admission process, which we appreciated greatly as we were both not no our game in any way whatsoever.  Several buildings to visit, many people to meet, even more forms to sign.  Then it was time to say goodbye.

We went back to the part of the campus where N would be staying. The door opened and he was there, looking at us with relief.   I could see instantly that he had been stressed.  He was sweating and his face was red, and he vocalized in his own way “uh-oh”.

How do we do that as parents when we cannot reason with our child.  How do we make it OK and reassure him?  We cannot.  I unpacked his clothes with the help from one of his caregivers.  I wanted him to see that I put them away.  That it was me, and I knew and was OK that he was staying there.  We went out to the common area and we did our hugs and kisses.  Somebody helped us turn around and go out the door.

We saw his silhouette in the doorway watching us as we drove away.   I don’t remember every feeling so badly.  I don’t remember ever wishing life could  be a bit less hard.  I don’t remember ever feeling so grateful and helpless. And angry.  Because we have to do this.   Because his needs are not important here where he makes his home.  Because the needs of the community, the school and everybody else there are more important.  Because everybody has to cover their own ass.  Because there has to be proof of need.  Because there has to be justification, transparency, for spending (unless your needs come with a photo op).  And then if there is justification, there is need for delay, in case somebody else comes forward and draws out their wallet first.

I am grateful for the people who have taken N into their care.  It feels good to be witnessed.  It is going to take me a few days to feel any kind of relief or enjoy myself for being able to be free of a horrible burden for a short time.

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An APB for Thanksgiving

Friday morning, just before the Canadian Thanksgiving long weekend:  a beautiful day with crisp cool air and lots of sunshine.  A perfect autumn ambience that was about to be shattered by my worst fear.

I had taken N to the doctor for a well visit.  We had a bit of a wait but not too long, by normal standards.  By N standards, it proved to have been too much.  After a quick examination and some discussion about his weight and the effect of medications, I turned around and noticed N had gone out the examination room door.  I went into the hall.  No sign of N.  I went out into the waiting area.  No N.  Somebody said they saw him go out the main door and left down the hall towards the elevator.  I stuck my head out and he was not in the hall nor was he waiting for the elevator.  A quick scan of the entire 5th floor confirmed he was not there.  OMG!  Where did he go?

I took the elevator down to the main floor.  If he simply got into the elevator with somebody,  he would have exited wherever that person did, most  likely the lobby. He had to be there.  I arrived in the lobby but there was no N in sight.

My heart began to race.  He must have exited the building.  There were 2 ways out – front and back.  I guessed that if he went out of the building, he would have gone through the back door which was the way we came in.  I ran to the rear entrance out into the parking lot.  No sign of N.

I was parked one street behind the medical building and so I ran to the car to see if he was waiting there for me.  No N.

Now I was in full steam panic mode.  My heart raced dangerously, I felt sweat running down my back.  This type of disappearing act was unprecedented.  Normally if he strays outside of my vantage it is not far, because he really wants me to see him and follow.   For him to disappear completely – that had never happened before.  And the possibilities for where he might go are endless.

I ran around to the front of the building and looked up and down main street. It was busy but the calm on the sidewalks betrayed N’s absence: people blithely strolled about, enjoying the downtown shops in glorious fall sun and drift of leaves.  The presence of N would present an unmistakable disturbance in the bucolic rhythm of the day.   He was not there.

After panic, the next stage gripped me:  cold fear.  I went back up to the doctor’s office.  I announced in the reception area that I had lost N and I asked if he had returned. He had not.  There were looks of shock,  alarm, incomprehension on the faces of the people who waited in reception.   Feeling alone and carrying the responsibility like a heavy weight inside me, I returned to the lobby.  Cold fear.  I felt that because I knew with a sick sense that he could be anywhere and wherever he was – he was alone.  He could point himself in any direction and just go, without a second thought.  Nobody could relate to him wherever he went, not at the doctor’s office, nor in the lobby, or on the street.  I called 911 and told them I had lost N, I told them  his name, I told them all about him, what he looked like, what he was wearing, what he understood and did not understand.  The police issued an APB and instantly all units were on the lookout.

As I waited there in the lobby for the police, obviously panicked,  a man with a thick Scottish accent noticed me and asked me if I was looking for “the wee lad”.  I said yes -have you seen him? (had to be N, even though he was not wee). He told me that just a few minutes ago, he saw N go into the pharmacy and then he came out.  He thought he saw N headed for the front door.  OMG!!- I thanked him.  I checked with the pharmacy – but they had no recollection of him coming into the store, so out the front door I went, desperately hoping he was not far.   No N.

I remained on main street, frantic on my cell phone speaking to my husband in tears, when a lady with two children approached me.  They asked me if I was looking for a disabled young man.  The little girl said – we followed him all around the block!  This lady and her children were kind and observant enough to recognize a problem –  that the person should not have been where he was, alone.  They walked behind him keeping an eye on him.  They told me he had gone back inside the medical building.  I thanked them sincerely, forever grateful, and went back in the lobby.

A lady in nurses attire was there, and I asked her if she had seen N.  She said that when coming down the elevator she heard sounds of jumping.  So we decided to go up the elevator and split the floors.  She went to floor 2 and I went to floor 3.  A quick survey of those floors turned up nothing.  She went to floor 4 and I went back to the lobby, to check out the basement.

I called down the stairwell “N”!!!!  “N”!!!!!   No reply, no N Noises, no sounds of autism or developmental disability, no loud jumping.  Then I heard the faintest echo of his voice.  It was coming from the elevator shaft.  I ran upstairs as the elevator door opened and there was N with the nurse.  He was wandering around the 4th floor.  It was not the floor where his appointment had been.  Of course he would not know that.  At the same time the police entered the lobby.

I cannot describe the relief that I felt at that moment.  He was safe and other people cared.  And the gratitude that I felt for the help of some bystander angels, and the police.  I had an APB for Thanksgiving.  And more.








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