Louis thank you letter

 

Reverend Louis Eugene Olivieri

1962-2014

 

A few weeks ago I walked into Lou's hospital room and found him dictating notes to his sister Dolores.

"Guess what mom?" He said, in a raspy, breathless voice, "I'm writing my autobiography."

I smiled and was anxious to read what he had written. Louis was getting weaker every day and even then I wondered would he have time to finish. Sadly, he never got beyond those first few pages and two or three video notes.

 

Throughout his life, Louis was always writing, and it was always about God. He'd spent two years at Atlantic Christian College, and later, five years in seminary studying theology. You'd be hard pressed to find someone with stronger beliefs and a greater love of the Lord.

 

So, back to Lou's auto biography. This was new direction for his writing. Now, his notes contained random, fun memories of his childhood. And in thanking you for your kind words and thoughts on Louis passing, our family wants to share a few of the words and memories he gave us in his last weeks on earth. I am going to skip the intro that contains birth information and a story on how we got to Levittown, but this is where Louis memories begin - Levittown Long Island.

 

 

    "My mother was having some ladies from the Levittown Cerebral Palsy Association over the house that evening and had just finished scrubbing and waxing our black tile living room floor. She was eight months pregnant at the time. I remember that mom was in the bathroom when my sisters and I decided to help her. She kept the door ajar so that she could hear us, and she heard Dee say, let's help mommy but she didn't hear the white, gritty Ajax powder being spread all over the shiny black tiles! I remember she stayed in the doorway crying when she found we had washed the floor for her. My mother was sensitive about the nice things we kids did for her. (It took awhile but she was able to redo the floor before the meeting.)

 

    Another time we kids were all watching TV together on the living room floor. Since the floor wasn't carpeted I went and got a pillow for my elbows. My sister Maria was laying on the floor beside me and I asked if she wanted to share my pillow. I guess after awhile Maria decided she wanted the pillow all to herself so she pulled it out from under me. I ended up chipping my front tooth on hard floor.

    

    One day my Aunt Mariann was visiting and I had cut myself on a piece of glass. Aunt Mariann wanted to remove it but I was scared. She said I could punish her if it hurt. So, I let her do it. It really hurt and I was mad! I told to stay in the corner until I said she could leave. After a minute my Mom said, "Isn't' that enough Louis?" So, I had to let her go, but I was still angry.

    

    The neighborhood kids used to play in our front yard because it wasn't fenced in. Thing is, they never let me play. One day mom had a talk with them and next thing I knew, I was in the game! The kids let me score a touchdown and rooted for me the whole time. I was so proud.

    

    Later we moved to Bayside, Queens. Since we lived in the city now I could no longer attend school at the Cerebral Palsy Center on Long Island. Public school and I did NOT get along. The kids were mean and I was meaner! I was tired of getting pushed around and got into a lot of fights. I remember one time, when I attended PS 32, I even bit the PRINCIPAL! Yes. Nobody was going to mess with me anymore."

 

 

And so Lou became a fighter, not of the physical sort but more of a go-for-it no matter the odds kinda guy. He worked hard for everything he attained. There are so many stories we want to share but for now, from the bottom of our hearts, we want to say

 

thank you for caring about and loving

our Louis.

 

The Alts, Olivieris, McVeys and their families

Sky was wild today but went to sleep very early – at 7:00 PM!
Sky is wild quite often lately.
Describe wild?
Rips, tears, breaks, takes everything out at once, and throws things on floor when he is done with them.
Sky is still not using the toilet for BMs, but holds it in at school. In fact, he always “holds it”. So last week, when he had a few problems at school, I was willing to bet it was a constipation issue. This weekend however, there was no constipation and well, Sky's behavior was still bad.
Monday, January 11, 2010, seemed like the worst day in our lives.
Sky would not do his homework. We begged pleaded, cajoled, ordered, and threatened. He was adamant, ornery, and mean. Arghh.
“No! I not do my homework,” he yelled. Then pretended we did not exist.
Funny thing is this was a special day for Sky; he received a backordered ‘flyboat’ from Santa!
Even threats that Santa was watching did not help his messed up behavior.
Fred was both angry and sad and said that he had a headache.
“We are not doing Sky any good.” He told me. “Maybe he needs to live somewhere else. We must be doing something wrong. Sky needs more help than we can give him.”
Fred was crying. I was crying. Suddenly Sky was crying too.
“I’m sorry Papa has a headache.”
He never seems to be aware of his surroundings. How much did he understand? This could be traumatic!
“You know,” I told Fred later, “no one in the family can take Sky. They all work and have their own families. Do you really think he’ll be better off in a foster home?”
Fred calmed down. “I don’t think Sky will ever be able to live in the real world. He’ll never be better than Beth. (Sky's autistic mother) and she can’t live on her own. Honey, what’s gonna happen to him when he is in his twenties and we are not here anymore?”
“It’s better for him to have us now, as long as we can do it, than any alternative." I reasoned. I also reminded him that we were finally going to get help. (We were just approved for CAP, which meant we would have someone here to help us with Sky every day!)
We tried again to get Sky started on his homework. This time there was no problem and that was comforting for all of us.
Our baby cried himself to sleep hugging us, asking us to keep him. We kept reassuring him; it was so sad.


Tuesday, January 12, 2010 – Sky woke up crying.
“Where’s Papa? He needs me to hug him.”
“He’s in the kitchen making coffee,” I said.
Sky bolted out of bed and down the stairs with me close behind. He ran over to Fred and said,
“Please keep me Papa.”
How sad. How very sad. Our hearts ached. I cried and hugged Sky. Through my tears and said, “I’ll keep you always Sky.” Fred was in a daze. I thought maybe he didn’t get how bad Sky felt, but he did not reply.
I half wanted to keep Sky home from school but decided to take him; it seemed more normal. I even let him bring his new ‘flyboat’ to school.
The Special Ed teacher was in the hall and she asked if Sky had a good morning. He kept walking. I looked at her moment and answered "no” and I kept walking too - holding back tears.
Sky’s mood changed in the classroom when all the kids made a fuss over the ‘flyboat’. Still tearing, I left the room without talking to his regular classroom teacher and headed back to the ‘special ed’ room to explain the situation.
As I left the room, the teacher’s assistant followed me to complain about Sky’s lunchroom behavior. She said terrible things adding more grief to what I already felt.
Sky didn’t spit food at home I told her. It was a something I could only talk to him about. She was really out of place, telling me that if the behavior did not stop we would have to come and monitor Sky during lunch. Arrrgh! She said his behavior had been atrocious since he returned from Christmas break. By now we were in the special Ed classroom. I turned to the other teachers and said I stopped in to tell them about the night before and to say we’ve had problems at home since the holidays. I told them, I was going to call the pediatric psychiatrist, Dr Foreman, to see if there was anything she could do to help.
As soon as I got home, I called the doctor and left a detailed message. The nurse called later and if asked if any meds had changed. I told her only that his Trileptal went from the brand name to generic and yes that is when I was sure the behavior change came about! I got out the bottle, the date on it was December 22, 2009. Yes, this was when the behavior problems started!
The nurse called again later; the doctor wanted to put Sky back on the brand name. She said that sometimes things like this occurred with generics. (At $375 a bottle I worried Medicaid would not agree.)
Later Fred and I did some autism research and discovered we were not doing a bad job; Sky’s traits are the norm for autism! Our being too lax and loving are NOT the cause of Sky’s problems, autism is!
We’d always taken the blame for his behavior but everything we read vindicated us. We also found horrible things were happening to autistic children because of their stubborn behavior patterns. The use of restraints is common and some children were actually ‘murdered’ by these techniques. They often roll the children in weighted blankets and some of the children were suffocated. We were appalled.


Wednesday, January 13, 2010 – Medicaid approved the change! Sky’s been a bit passive these last two days. Even though Papa also promised to keep him forever, Sky is still bothered. He made the teacher call his Papa at home today, to say that Sky was doing all his class work.
The big thing now is will the medicine make a pronounced difference? Today he did two days homework! (They forgot to send his work on Tuesday – a blessing for this family.)

1/21/2010

Too bad I let so much time pass. Last Friday Sky got in trouble
for spitting in the lunchroom. The teacher who takes him to lunch is an
assistant and is always complaining about his behavior at lunch. Last week she
told me if I didn’t do something Fred and I would have to come and care for him
at lunchtime. That’s fine with me, but I believe the school has to do something
about it. Talking to Sky and telling him not to spread his lunch out and not to
spit does not work. If some kid tells him to do something…he will.

Thing is he got suspended! He was home to day for spitting last
Friday. We had holiday in between. I will elaborate on this story when I have more time.

Oct 7, 2009

Sky had a bad day today. First wild day in four months…first
piece of catapres patch in four months! They said he was hyper at school and at
home he was WILD. Had to be something he
ate or drank at school.

On the potty side: Other day he said “Honey I can’t use the potty
because it frustrates me.”

Frustrates him!!?? Where did he get that?

Oct 8

Catapres didn’t calm him down but today he was depressed. I took it off. I’m sure yesterday’s behavior was a reaction
to something.

A life less ordinary?: Zakhquery ( Zakh ) Price and the system

A life less ordinary?: Zakhquery ( Zakh ) Price and the system

Countering Age of Autism: Emailing on Behalf of Zakhqurey Price

Countering Age of Autism: Emailing on Behalf of Zakhqurey Price

Tuesday, March 03, 2009
Last night Skyler had his first dose of trileptal. He fell asleep around 8:30 – which is good.
Today, with school closed due to the snow and ice, we were able to keep close tabs on him. We watched for changes. He was calm most of the day. Did many of the things he usually does at home – computer, cars, and games. There were things he refused to do – pick up toys, also the norm. We usually have to coax him promise him something to get things done. Promises include negatives sounding things – like if you do not pick up your toys now, we won’t go to McDs this week. At speech, he was difficult and did not comply with most of the things Donna asked him to do.
Ate well.
Tuesday night: Hyperactive, did not fall asleep until after 10:00PM; did not sleep well. Many dreams, talking in sleep, moving around – very uncomfortable.
Wednesday: did not eat much breakfast, maybe half a pop tart and some juice.
School called said he was throwing up.
He came home holding his chest, extremely pale. Continued to spit up until 12:30 then suddenly regained color.
No real vomiting…more of a clear colored liquid.



March 2
Today I was looking at old notes about the dangerous things Sky might do. It hit me that I never mention swings. No matter how often I warn him, he still will walk in front of a moving swing. The rest of this old note mentioned getting off of moving things before they stop – swings, motorized things like toy vehicles, carousels and yesterday, for the first time, when we pulled in the yard he unlatched his seatbelt, slid across to the door without a child-lock and had it open as we stopped. Lesson: child-lock both rear doors!




Feb 26th
Concerns about workers: This one wanted to leave because she said she could not run his goals at home. Others have said, "I ran his goals, so I am leaving."
It’s dizzying.
While workers were attending Skyler, I managed to get two broken printers! The worker was writing his notes.
There was also the day; the bathroom was full of baby powder. It was everywhere. My daughter saw the worker, in my bedroom on a cell phone!
Homework…this is the best way for Skyler to accomplish his writing and fine motor goals. Sometimes they do not even attempt to address his homework. Sometimes it is done well, incredibly well; I know Sky didn’t do it!
I have to leave the room because the worker is uncomfortable with me there. She stands around and does nothing when I am there! There are times when the worker and I need work together to accomplish Sky’s goals.
I really feel as though Fred and I are the only ones accomplishing his goals. No one but Fred and I worked on his holding a spoon properly. He used to turn it upside down and get it all over himself! It was a written goal, but if we said it was time for Sky to eat, workers took that opportunity to leave early!





Saturday Feb 14
In Target: He did not want to leave. He lay on the floor – his idea of a sit-in.
Coaxing does not work. We used coercion in the form of picking him up and putting him in a shopping cart still works but he is getting heavier.





Feb 3 09
We went to a restaurant for dinner and Sky broke away from us and ran into the restaurant. I went after him; tried to coax him back to where his Papa was. No luck. He wanted to run around the buffet, looking at everything in the place. This behavior is par for Skyler’s course. He ate well. Then, after dinner, he continued his pattern of getting up and running around. Now, he is watching a movie – Speed Racer. In a few minutes, we will try to get him to go to sleep. Loosely translated that means he will leave his bed and come in ours. It also means that we go to bed too. This process sometimes takes up to two hours, so by then we are all asleep!



January 29, 2009

Skyler did not read The Wagon. She showed him the social story I wrote and asked him to read it. He read the page aloud, and then pointed to the specific line and said, “See. It says, 'I will not read it!'”

Ms Lee offered him another book about birds. It was actually at a higher level. He got very excited about the new book and read it right away.
Ms Lee thinks not reading The Wagon was a power play.

I learned not to write negative things in my social stories. I took that line our of his story.



January 28 09
Skyler has been refusing to read for Ms Lee. She cannot grade him for this report period.
I tried a social story. My first:
Skyler’s Reading Day
Miss Lee is my teacher.
She wants me to read “The Wagon”.
I said, “I will not read that book.”
Miss Lee feels sad because I do not try.
I want Miss Lee to be happy.
Today, I will try to read “The Wagon.



Thursday 1/8/09
At the shot clinic, he wanted to play outside. He ran away (in parking lot) and refused to come back.
“NO! I NOT COME BACK!”
Ms Lee said he was like that all day - “Up and down”, meaning good and not good…

Skyler is an academically gifted autistic five-year-old. He can read and write and his math knowledge is much better than average for his age.

His teachers are unhappy with his behavior.



On moving Skyler to the autistic class


Skyler already knows how to act autistic, we want to change these behaviors not increase them.

Skyler is a mimic – that is part of how he learns.
Think about that.
Put our little mimic with normal children and he begins to act in a normal manner.



On his behavior problems


Skyler has odd behaviors and does not always comply with his teachers’ wishes.
Since he learns so readily, we feel he can improve.
We have started behavior counseling and with this help, he can make strides.

Moving him out of his current classes is best for the teachers because they have so many other children to tend.
We agree, controlling and redirecting Skyler often requires one-on-one attention, creating a stressful situation for his already overburdened teachers.



However, we want a plan that is best for Skyler.



Does Wilson County even have the small classes his teachers tell us he needs?

Are there other academically gifted children with problem behaviors? Are there classes for them?

Can Wilson County Schools honestly show us a better fit for Skyler, than the placement he now has?

!!! I'm already thinking about NEXT Christmas!! It's closer than U think!! ARRGH...bah humbug .. View Album Get your own .. View Album Get your own

On being told at the very last minute that the February 12, 2009 IEP was called off



This was emotionally draining and extremely stressful. We understand things happen that are beyond normal control. We understand that people get sick.
That does not change the exasperation my husband and I felt about this cancellation.
We had arranged for someone else to take Skyler to his allergy shots, his speech therapy and his tae kwon do lessons.
Finding people who are available to do this is difficult!

We received very short notice about the IEP meeting. Our initial invitation showed the meeting was planned for April 12, 2009! (A typo?)


The second notice showed February 12, 2009 and I did not notice the date change. I also did not sign and return either of these because my Case Manager told me to get a facilitator.

The next day, February 10, 2009, I received a third notice!
This time I noticed the date change.
The day was Tuesday and the meeting was on Thursday!


My husband and I made the difficult decision not to tell our case manager or anyone else about this meeting.
We wanted to hear what the teachers had to say and we felt we needed to filter out any other input.


Now, sadly, we face a 12-day wait!


We wish the teachers could meet with us informally and tell us what the problems are.
Or, meet with each other and send us a note about their ideal next step for Skyler – then, with everyone “fully informed”, have an IEP meeting to make necessary changes. Instead, we are left wondering - what do they want?



Ideally, the teachers need more help – someone who could redirect Skyler or even take him from the room when he acts inappropriately.


Everyone knows what we want.
We want Skyler to stay at Wells.
Academically and socially, Wells offers the least restrictive environment for Skyler.



Because of Skyler’s high academic skills, his is an unusual situation that likely requires unusual classroom placement or one-on-one assistance in the classroom.

Invictus Out of the night that covers me Black as the pit from pole to pole AUTISM

Sky is a flight risk in the autistic diagnoses realm. These kids will take off in a heartbeat.


The other day we were leaving Chic-fil-A. I put Sky's coat on and Papa went to get some more drink.


I turned and Sky was gone.


I glanced in the small play area - no Sky.


Panic set in as I looked out the window!


Yes. He was outside!


In the dark.


Alone.


No fear.


No sense of danger about traffic.


I ran out the door and down the sidewalk calling his name.


Begging him to stop.


He never looked back.


He was in his 'deaf zone' - walking ahead, stepping-on-and-off the curb, scaring me to death! As he neared the roadway, I saw headlights coming from the drive-thru.


I ran faster, screaming for him to stop.


Suddenly, Sky saw our van and turned back toward it.


Relief. I knew he would head for the door near his car seat.


I scolded him as I put him in the car.


Wasted words.


There was no one there to hear me.


Autistic children are often lost in the tunnel of their own existence.

The rate of autism increases rapidly. One out of every 150 children is born with autism - most of them boys. These are frightening stats.

How did we know Sky was autistic?
At first we didn't; the symptoms seem to creep up on you. He never smiled. He stared endlessly at mobiles and fans. Fans were his big thing. He never looked anyone in the eyes! At times we thought maybe he was deaf. He seemed to exist in another universe. Remember these symptoms because autism needs early intervention!


Create Your Own!

On the autism spectum, Sky is hyperlexic...he loves letters and numbers. He showed amazing reading skills at two! (He really did not understand what he was reading.)
He is also fascinated with 'signing; and knows many signs.

One day, Sky went to a new speech teacher, Donna. Donna wanted Sky to say ‘yes’ each time he wanted something.
She would hold an item (he’d be reaching for it) and she'd ask, “Do you want this?”

He would only get the item if he said yes. Even though he wanted the item Sky would not reply.

While the teacher had her back turned, Papa helped Sky by signing ‘Yes’.

Later the teacher said the signing was okay, because it helped Sky understand the behavior expected of him.

It's AUGUST!!! Are you thinking about Christmas?? It's closer than U think!!

The neatest thing happened. We were trying a hide-and-seek type game (with rewards) to encourage Skyler to say, "Here I am!" when he is called. You know, in case he ever gets lost.

Suddenly, he started singing the "where is thumbkin" song. I realized I had only been listening to the tune. But now, I heard new words. Skyler was singing "Where is (he said a name)...where is..."

So we sang, "Where is Skyler" and he sang back, "Here I am!'

He learned these words at school, during attendance check. But, we have a new use for it! When he disappears - we sing "Where is Skyler". It works!

Autism is a complicated puzzle.

I received this helpful and encouraging message on my brickfish profile page.

"...I have an autistic boy. mild aspergers (autistism spectrum). We worked with him non-stop, and address his behavior problems with redirection, stability and medication. He will be 17 years old soon and he was just nominated for the national honor society. It is a lot of work, especially since I have 2 more the same age.
So good Luck, and keep working on it. It does make a difference."

It came from a member named Debbie and gives me great hope for Skyler! I am so very greatful...also I think that note infers her son is a TRIPLET! {smile}

Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. These facts from:
Autism Speaks

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