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

christmas-vacation

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

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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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Cashing out with Autistickid

Now that N is approx twice my size I am reluctant to take him shopping with me, by myself.  I have had shopping failures in the past that make me afraid to take him with me to the supermarket.  I have chased him in the store, lost him in the store, unwilling to budge in the store.   I have had him hide in a rack of items and refuse to come out, I have experienced a temper tantrum in the store that made a spectacle out of us and fortunately did not result in injury to anyone. All too old for that.  These incidents were unpleasant but were relatively easy to manage when I had the physical edge, the advantage of being able to drag him out kicking and screaming.  But now – yikes?

I want him to be able to go into the store and not be overwhelmed.  That means I have to try and expose him to grocery shopping regularly.  If I never take him, he will have more difficulties in the future.  So in order to do that, and avoid problems, I take the following precautions:

  1. I take N only when I know the store is not overly busy.
  2. I bring him when my shopping list is short and I can be in and out in less than 15 minutes.
  3. I go to the cash when the line-ups are brief and we can get through quickly
  4. I bring him only when he is in a good mood, behaving well, and not hitting.  Shopping is a reward for good behaviour.

I recently had a close call where N came almost did a repeat of past shopping failures.  It was a weekday in the early afternoon and I had 6 items on my list.  We swiftly collected them and while there were only a few checkout lanes open. I found one where only one person was in front of us and half cashed out.  So I loaded up my items.  But the lady in front of me was not going about checkout quickly.

I soon realized I was in trouble.  N was starting to sweat and jump up and down. Signs of distress.  I don’t want to insult the clever people who price match, I am an accountant and so I have an appreciation for cost saving measures.  Price matching helps families keep their food bills in budget.  But this person had price matched every single item in her cart, and each transaction was taking far too long!

“Good waiting!!!” I muttered to N softly – I did not want to be in the lady’s face, at least not at first.  I high fived him. low fived him – tried to keep him busy and distracted.  I tried to interest him in pictures of Prince William and Kate and their babies on the tabloids behind the conveyor.  I allowed him to extract and drink a can of Coke from the pop fridge on the other side (put empty can on conveyor – did not steal).

We waited at least 15 minutes for the lady to save – what $5.00?  Good for her, but really not just an inconvenience for us.  In fact it could have resulted in somebody getting hurt.

I kept my cool and fortunately so did N.  However inside me I had fantasies of  vaporizing the lady in front of me.  I  cannot expect her to understand my situation waiting with a DD and autistic kid.  Should I expect the store to understand?  I don’t know.  I think that a check out lane should be designated as a price matching lane for those guys who are expecting to take a long time in the store.    Kind of like a reverse express lane.  Just my opinion – I would line up somewhere else if I knew in advance.  What do you think?

 

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Target has posted their year-round price match policy at locations around the downtown Mineapolis store and other stores nationwide on 1/8/13.] Bruce Bisping/Star Tribune bbisping@startribune.com ORG XMIT: MIN1301081655321509

 

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Hope for Understanding – Autism/DD

tree_canopy_5494221359We strode across the grassy field of the campus. It was a quintessential June day: sunny with wispy clouds, pleasantly hot, stirred by a breeze filled with the fresh scents of cut grass and newly burst leaves and flowers. The grounds were spottily shaded by a canopy of mature oaks and maples, whose dark trunks provided contrast to the foliage of shrubs and evergreens, and the stalks of silver birch. It was beautiful June, idyllic and serene, a June day long dreamt about in the cold of winter and damp of spring.

Flashback 30 or so years. I was here before, I remember that concrete ramp leading up to the door of one of the buildings.  I was a young psychology student.  I stood somewhere at the base, nervously waiting to go inside: I was early for my volunteering appointment. The same spacious grounds shifted around me in my memory. It was this place, but it was different.  The brick buildings I recall looked dingy, now the yellow bricks were scrubbed clean and looked contemporary. The prison-like feel was replaced by a more academic persona.  Several colourful playgrounds now dotted the fields we walked through . What mattered most was on the inside.  Would we finally get help here?

I was enjoying the peaceful walk and the flicker of memories until suddenly N had one of his nasty bursts of temper.  He was fine in the waiting room, being a veteran of medical visits.  However the walk in an unfamiliar place got him confused.  My husband P attempted to calm him, while I continued into the building where we would meet a team of specialists who would consider whether he N is a candidate for their multi-disciplinary evaluation and intervention program.

The building where the meeting was held was the location of the services that we hoped N would receive.  It had the trappings of a respite home, being sparsely decorated, nothing loose that could get thrown about, nothing breakable not protected by a barrier of sorts. I was happy that the facility was obviously practical and safety oriented, and not window-dressed to please the average parent.

I was led to a room with a large table, where there were about 6 professionals already seated.

I always feel a bit leery about answering honestly certain questions, because the truth can be misinterpreted.  The big question I worry about is – is there presently danger of harm by N to himself or others?  If I say yes – I worry he will be put into some kind of “care”, where if anything, we could expect aggressive behaviours would get even worse.  If I say no – then I am not exactly telling the truth, and I am under-representing the problem.   I worry that if I reveal my feelings, my despair, my lack of personal resources, that I will become the patient instead of N, in addition to the worry that he will be taken away.  So I try to read between the lines before I say too much.  I had to feel out the personalities around the table.

The first question threw me – what were my expectations for the program.    My first thought was “I don’t expect much” in accordance with past experience  in other programs, but that response might be seen as having “tone”.  So I did not say that.  I had to think hard, because I have lost my dreams and hopes, and so I do not make a habit to anticipate future things any more when it comes to N, especially help.   Could I say that?  How could that be misinterpreted, let me count the ways!!!  To be honest, I did not really know what my goals were.  Yet if I say “I don’t know” or “please help me” or worse, nothing, then I look like a moron, or that I have not really considered what the program is about.   I finally uttered a vague goal that seemed neutral:”I want to keep him at home”.

UGH!  I regretted that as soon as the words left my mouth.   It is true, however I want what is best for him, and if that is not best for him then I need to understand why.  I have no ulterior motives.  A discussion of more general goals for N followed later and I said something equally regrettable “I want him to be happy.”    Yeah, I did it, i did the h-word faux pas. There ensued a brief commentary on “what is happiness”  and I felt my face going red with embarrassment.  Doh!  Happiness is relative.  How do I guide the team with something like that?

N and his dad joined the meeting once N was settled, and N was well behaved and charmed the team with his handsome smile and cute manipulative behaviours amusing to those who do not have to care for him 24/7.  We talked about how N was N and he would not change much.  I understood that, but I also knew that a small change for a normal person could be a huge change for him, for us.  I had sent them so much information, perhaps too much.  I resolved to send the team a few goals that could be achievable in my opinion.

What was clear to me  after the meeting was that we had not been turned down.  In fact, finally, after almost 15 years, I felt that we had been witnessed.  They were listening, they were interested in helping, they understood.  I felt that a huge weight had been lifted from me.   I actually felt light, I was galvanized by a bit of hope, that even if N was N and even if he would not change a bit, that something good would come of this.  I would have something in writing from experts that I could use to help him get the supports he needs in the future.

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