Sewer Feeder and the Seven Nation Army

Submitted to us by Lucy Cellucci, a local writer of young adult fiction. Thank you Lucy for getting involved with our project!

“Do you think there’s something wrong with him?”

If I had a loonie for every time my husband or I began a conversation with each other that way, I’d have a collection of change plentiful enough to keep every mechanical bull in Texas operating consecutively for six months.

Jayden Giovanni Cellucci came into this world like a hurricane, via emergency C-section, in the wee hours of the morning on October 31st, 2005.

As a newborn, he was quite calm…angelic, in fact. He slept well and gave me three- to five-hour stretches in between nightly feedings. But around three months of age, my quiet, sleepy little baby decided to wake up and make his presence well known to all those around him.

Jayden had adopted the mindset that “Sleep was for the weak.” And he swiftly put into place a program to help me overcome my dependency on the Sandman. After all, if he could get by with forty minutes here and there during the day, why couldn’t I? What could I possibly have going on in my life that would require me to need any more rest than that? I began traipsing into his room at all hours of the night to nurse my fussy baby back to sleep, only to have him wake up an hour later and repeat the whole process again, and again, and again.

“But he wouldn’t be crying throughout the night like this if he were okay, would he?” I asked his doctor after three months of being the sole employee at the 24-hour, all-you-can-drink dairy bar. “Do you think there’s something wrong with him?”

I didn’t know it at the time, but it would be another five years before my over-stimulated baby would quit seeking my counsel between the hours of midnight and six a.m. When he was finished with nursing, I assumed it was teething that kept him up at night, and when all this teeth had come in, I blamed his new bathing suit with the blue fish for keeping him up…why else did he feel the need to constantly open his drawer and check on it in the wee hours? And that is to say nothing of the wonderful night when he appeared at my bedside at two in the morning, full of urgency to inform me that Jack White, lead singer of the rock band The White Stripes, was a “really busy guy” because not only did he sing and play guitar in his own band, he also performed in The Raconteurs, and now, a new band, The Dead Weather.

As Jayden grew into his toddler years, he developed a peculiar attachment to Mason jar lids. Some people use these lids with the screw-on rings to seal jarred preserves and homemade jams…not at our house. They were our son’s toys. Around eighteen months he began to acquire a collection of lids which he would spin for long periods of time. Sometime after his second birthday, he began arranging them into patterns and gingerly walked around his creations, muttering words that were incomprehensible to the rest of us. He even began taking his Mason jar lids to bed, tucking them tenderly under the covers for safekeeping.

Also, around this time, Jayden started to take an immense interest in sewers. To be honest, the word interest does not accurately reflect the level of enthusiasm my son held for these conduits of city infrastructure. Obsession would, in fact, be the better choice of nouns.

Jayden’s grand pre-occupation with sewers interfered in many aspects of his life. As a three-year-old, it made it impossible for him to learn to ride a tricycle. We couldn’t pass more than two feet of road without him jumping off his trike to run and stand on top of a manhole cover and yell, “WOW…S-E-W-Y!!!!!!!!!!”

During the winter, he would stand in front of his bedroom window, watching with mounting anxiety as his precious “sewies” were covered with a blanket of thick snow. This, in turn, led to a full blown search-and-rescue mission the next time we left the house. He would run out onto the road, drop to his knees and begin to dig out the manhole covers from beneath their snowy graves. Any attempt we made to prevent him from doing so always resulted in a meltdown.

When the weather got warmer, excursions to the park quickly morphed into “sewer-feeding” sessions. Jayden even began to refer to himself as a “Sewer Feeder.” This was, in fact, his opening line to break the ice with his pals from nursery school: “Hi, my name is Jayden. I’m a sewer feeder. Join me.”

 “Do you think there’s something wrong with him?” I asked his nursery school teacher during an interview. My question was quickly dismissed. My son had efficiently charmed his teacher with lengthy discussions on the different types of sewers, explanations on how water drains from the sink, and visual demonstrations incorporating a full bucket of water, on the theory of displacement. Displacement? What the Sam Hill was going on here? This, coupled with the fact that Jayden was capable of counting to one hundred at the ripe old age of three-and-a-half, had endeared my son to his teacher in a most captivating manner.

“Oh, gosh , no…there’s nothing wrong with him,” she gushed. “In fact, you and your husband should start saving your money…that boy’s going to MIT someday!”

By the time Jayden had started kindergarten, I had resigned myself to the fact that I was the parent of a headstrong, bright and precocious child…nothing more. So, you can imagine how less than thrilled I was when his teacher came to me with a list of what she deemed “unusual behaviors” and seemed to think there might be cause for concern.

What? I thought when she first approached me. What do you mean you think there’s something wrong with him? Didn’t you get the memo…he’s going to MIT! But after I had a chance to get over myself and take my faulty defensive wiring offline for a few days, I sat down and made my own list. And what I came face to face with was a child who was obsessed with sewers, traffic lights, and street lamps to the point of such distraction that he could barely focus on anything else. He slept poorly due to his constantly racing mind, had difficulty articulating his speech, and could not, for the life of him, interpret facial expressions or tones of voice. In fact, a voice raised in anger at him often produced excitement and fits of laughter. He was given to bouts of hyperactive behavior (even without sugar), inappropriate outbursts, and meltdowns occurred often throughout his day, usually as the result of having to transition activities.

On paper, the truth was irrefutable…something was indeed wrong. And though my little boy was not without his charms, I could no longer deny the fact that we were just a couple sombreros short a mariachi band.

So, I packed up all the lists and set out on a quest to find an answer to my burning question. For the next eighteen months we submerged ourselves into the purgatory of seeking a diagnosis for my son’s puzzling behaviors. We saw a pediatrician who specializes in behavioral issues, who then referred us to a child psychologist, who then referred us to a pediatric neuro-psychologist.

Anyone who has taken this journey with their child can attest to the disturbing feelings that arise when the oceans of anxiety begin to churn in your gut. You sit in waiting rooms with signs that read “Mental Health Outpatient Unit” and you gaze at the brightly painted pictures on the walls, and play with plastic blocks and dinosaurs, all the while quietly wondering what the future will have in store for your family. Two weeks before Jayden’s sixth birthday, the jury finally returned with a verdict.

“Our test results firmly support a diagnosis of autism,” the neuro-psychologist at the CHEO calmly informed us.

For me, these words resulted in both tremendous relief, and sadness. However, the more I learned of this disorder, the more encouraged I began to feel. Autism is, due in part to its broad spectrum, widely misunderstood. Most of us conjure up the image of Dustin Hoffman in the movie Rainman when we hear about someone having autism. I have to admit that I, too, had trouble digesting my long-awaited answer. The day we did our ADOS testing, we waited in a room with children who rocked back and forth in their seats, staring vacantly into space. There’s no way this is us, I thought confidently.

But autism is a broad spectrum neurological disorder that causes developmental impairments in the realms of communication and social function. Individuals with autism spectrum disorders (ASD) may appear to have no interest in other people or no idea how to appropriately engage with others. They can be intensely preoccupied with odd interests and subject matter (ahem…have I mentioned the “birthday sewers” that get drawn on birthday cards around here?). They can be lively and hyper, displaying odd, ritualistic-like behavior, or appear positively catatonic. And often, they may appear almost “gifted” in one area. My son, for example, is displaying a keen aptitude for math. At five years and ten months of age, he scored at a grade three level for his understanding of geometry. This is evident in the fantastic drawings he creates of city landscapes and infrastructure that are now beginning to incorporate two-point perspective and three dimensional buildings.

 The truly interesting thing about this disorder is that no two individuals with autism will present with exactly the same symptoms. Fortunately for my boy, he falls at the high-functioning end this bizarre continuum…encouraging news indeed for his future. To the untrained eye, he appears to be nothing more than a loud and lively young lad who is content to draw pictures of cityscapes or build  them out of Lego for long stretches of time. I am convinced he is destined to one day put his brilliant little mind to work as a civil engineer (perhaps he will be able to help the City of Ottawa solve the conundrum of the light-rail-train-to-nowhere).

My concerns for him are not so much in the realm of whether or not he will ever graduate from high school, or be able to secure gainful employment at some point in his life, but whether or not he will ever be able to interpret the ebb and flow of social interactions, and have the ability to form lasting relationships in his life. I see how some of the kids at the playground are beginning to look at him, and part of me wants to wrap my arms around him and turn back the clock to the first night I brought him home from the hospital. I lay in my bed with him on my chest, inhaling that intoxicating new-baby scent from the top of his head, promising to give him a wonderful life—a promise that may be infinitely more difficult to keep than I had originally anticipated.

So now we move on to phase two of our journey. Once again we are waiting—this time for the support Jayden will need to give him the tools to function successfully in all areas of his life. Our immediate focus will be speech therapy to improve his verbal communication skills, and behavioral therapy to give him (and us) the tools necessary to regulate his emotions, which will hopefully better help ease him into transitions and result in fewer meltdowns.

In the one hundred days since we’ve received our diagnosis, I have become increasingly encouraged about the future, and better yet, calmer about the present.  And as a smart friend of mine recently pointed out, a labeled diagnosis doesn’t change the fact that I have a great kid.

I find myself clinging to this comforting thought on the days when I feel consumed by his challenges, and the anxieties they stir for what lies ahead for him. I know that the day will soon come when I will no longer be able to cheer him up with a drive to Starbucks for a cakepop, and a sewer-walk.  His problems will be far more complex. But for now, I have time…time to learn, time to teach, time to breathe. And for now, I am choosing to focus on what is right in our lives, instead of what is wrong.

Lace up your shoes, Sewer Feeder…we’re going for a walk 😉

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More programs needed for autistic adults: parent

The following article by Jessica Cunha was featured in the October 25th edition of the Kanata Kourier Standard. We thank Diana Gibbons and Simy Illouze very much for bringing this amazing story to our attention.

‘Children with autism do not disappear from society and their needs do not go away’

More programs needed for autistic adults: parent. The Kanata Language Arts Program, an educational day course for adults with development delays, uses fun activities like parachute dances and adapted line dancing as socialization opportunities.

One Kanata woman has started a day program for teenagers and adults with developmental delays, but she says more are needed for those with autism.

Simy Illouze launched the Kanata Language Arts Program in 2011 to address what she calls a gap in services for high-needs adults when she couldn’t find a day course that suited her son, Rafael.

Now, 22, Rafael is an autistic adult with limited options when it comes to educational opportunities, said Illouze.

“Until he was 21 years of age, Rafael attended the public school system…Just before his high school graduation, like all parents before me, I embarked upon the search for a day program for him,” she said. “This is Canada, not the USA; unfortunately we don’t have day programs for adults with autism only.”

She said she only found two programs in Ottawa with an educational component, but attendees had to be able to function in a ratio of one worker for every nine participants.

“That’s their criteria. It leaves a lot of people unable to attend,” she said.

“I was told that if my son was to ever have a meltdown, the kind that many adults with autism can still have, they would want permission to medicate as they neither had the proper staff ratio nor the expertise in the field to manage outbursts and behaviours.

“We do have programs for children with autism only. There are many private programs. But there’s nothing for adults or teens.”

So Illouze decided to create her own program.

Participants must attend with a support person, or a minimum ratio of one worker to two attendees for those who can function more independently.

PROGRAM PROBLEM

Diana Gibbons ran into the same problem of finding a day program that suited her autistic 22-year-old son Christopher.

“We are a family like every other who have dreams for our children. Our dream for both our children is to be the best that they can be and live happy, meaningful lives. While our daughter has the ability to go out in the world and fulfill her own dreams, our son needs assistance,” said Gibbons.

She struggled to find a program that would suit Christopher, 22, a high-needs adult with autism, obsessive compulsive disorder, attention deficit hyperactivity disorder and sensory issues.

Then she discovered the Kanata Language Arts Program, which Christopher attends every Monday and Wednesday.

“This is a place where Chris fits in,” said Gibbons. “I’m fortunate I met Simy…If I didn’t know her we wouldn’t have the language arts program.”

October is Autism Awareness Month but it’s something that should be discussed year-round, said Gibbons.

“For people with autism, it’s hard to find programs with proper care,” she said. “The bottom line is he will never be able to function independently.”

Aside from the language arts program, Christopher also attends a fitness class twice a week with a personal care worker.

Most programs have a worker to participant ratio of one to five, which isn’t enough supervision for someone with high needs.

“On paper it looks great, it looks like there’s oodles and oodles of things,” said Gibbons about the programs offered for adults with developmental disabilities. “(But) there is nothing that really suits someone with as high needs as (Christopher).”

There are many options out there for children with autism, said Illouze, so it’s baffling that these programs don’t exist for adults.

“Children with autism do not disappear from society and their needs do not go away,” added Gibbons.

‘PRO BONO’

A qualified teacher, Illouze develops the literacy materials specifically for the students in the language arts program. Topics include: countries of the world, history and cultures, religious and non-religious holidays, plants and animals, science, nutrition and fitness, and movies.

“We want them to learn about the world and we don’t deny them this opportunity because of their special need,” she said. “My own son and the others, they have learned information they didn’t even learn in high school.

“When we cover cultures and the reasons for the holidays…this is all information that was never covered with them when they were in high school or primary grades because the system considered them not functional enough.”

She uses language-based games and crafts to help her students retain the information and they take “body breaks” to help keep them focused.

“It gives them a window into a world that was never opened for them before,” said Illouze. “They go home at the end of the day with some information that they will retain.”

There is no funding in place for the Kanata Language Arts Program.

“I offer my teaching and material preparation services pro bono two afternoons per week. Families contribute to the very low cost of rental for the premises rented through the City of Ottawa as well as minimal costs for craft materials,” said Illouze, adding, “It has been extremely rewarding for me to see the participants thrive in this environment.”

The Kanata Language Arts Program is open to all teens and adults with developmental delays, said Illouze, not just those with autism, and she’s hoping to attract more families who see the need for continued education.

“If there was demand out there it’s a course that could become five times a week,” said Illouze. “We really need people to come to this course if we want to survive.

“We have sent invitations to all the day programs for adults in the region, inviting them to send their participants…to our program.”

Gibbons said she hopes someone will step forward to help fund the program.

“This segment of the population does need more funding. There needs to be more for adults with autism.”

A big thank you to parent Diana Gibbons for sending me this article. For more information on the Kanata Language Arts Program please email Illouze at logme@rogers.com.

Where will you be on April 2nd?

This past week something amazing happened in Ottawa. Bill C-206, an Act Respecting World Autism Awareness Day, was passed by the House of Commons making it into a law. April 2nd will now be World Autism Awareness Day in Canada.

From the news release:

“I hope families affected by autism will see this gesture as a reminder that they have not been forgotten,” he added, marking this momentous occasion. “We still have much to do, but the passing of this bill demonstrates that Canadian lawmakers care about autism and autism awareness.”

Read the last line carefully. Lawmakers care about autism and autism awareness. Let us not let them forget about this. Please use the above statement to constantly remind our governments that more needs to be done for the children and the families!

Thank you Senator Jim Munson!!

We are planning something for April 2nd. We’re not sure what that is yet, but we will let you know and we invite you to join us.

Where will you be on April 2nd?

Ryder’s Story

Hi Everyone!

I made this video for Miriam Fry from Family Matters Co-op.  A small group of people from several local family organizations is meeting with MPP Christine Elliott on October 27th.  They will be familiarizing Mrs. Elliott with the situation in Eastern Ontario for families who are supporting loved ones with developmental disabilities.

This was my contribution.

Announcing the Ottawa Autism Roadmap

We are very pleased to share the Ottawa Autism Roadmap with you! The Roadmap was conceived on pieces of scrap paper at a coffee shop in Ottawa during a conversation between three Moms with young children on the spectrum. We were comparing notes about our experiences and realized that no process existed for parents to follow, at a time when you need a lot direction and guidance.

We hope that you will find it a useful reference tool! Please share with anyone and everyone you think would need it.

Thanks and please visit again soon!

Words

Words.
Such simple things but their impact can be enormous.
For example, I hate the word “autistic”. I hate the “stic” at the end.

He’s autistic …
She’s autistic …
Autistic children and their families …
I will do everything in my power not to use that word, even planning my sentences before speaking.

I prefer to say:

This is my daughter, she has autism.
She’s on the autism spectrum.

There’s a great book out there called “10 Things EVery Child With Autism Wishes You Knew“. The word autistic is discussed in there and I tend to agree. The word makes it sound like that’s all the child is about when they are, in fact, a child first. A child with tons of beautiful and amazing traits, of which autism just happens to be one.

Autism, ASD, on the spectrum.

That’s what I’m going with. What about you?

What has TROTT meant to Ryder?

What has TROTT (Therapeutic Riding Association of Ottawa-Carleton) meant to Ryder?

Ryder is my 6 year old son who has ASD. He started with TROTT in September 2012 and it has given him so much. We didn’t notice it after the 1st lesson, but definitely after the 3rd and 4th. His confidence blossomed. He was initiating conversation with his EA at school. He was proud! Seeing a change like this in a normal child might be taken for granted, however seeing this in my son was amazing. You see Ryder doesn’t usually initiate conversation with anyone. He is not the type of kid that will tell you about his day at school, you have to poke at him to respond. Usually his response is very minimal. However this all changed when Ryder started with TROTT. If you ask Ryder about his horse Monty, his face and spirit lighten up the room. The expression on his face is enough to put a smile on your face.

When you hear Ryder speak about his horse Monty, his whole demeanor changes. He becomes more confident in his speech and he speaks more freely. He usually ends the conversation with, “Is it Thursday night yet?”

Here is some info on TROTT:

TROtt (Therapeutic Riding Association of Ottawa-Carleton) is a registered charity that has been serving children, youth and adults in the Ottawa area with primarily physical, developmental and learning disabilities for over 35 years.

In 1975, a group of riders at an Ottawa stable became interested in forming a riding group for People with Disabilities. Lelia Sponsel, having made enquiries from the Toronto-area group, CARD, began to develop ideas regarding procedure, forms, volunteers, training of horses, equipment and the need to involve the medical profession. The main support came from Dr. McIntyre, orthopedic surgeon at CHEO, who encouraged the Children’s Treatment Centre to help with the development of the necessary admission forms and selection of prospective riders. A mounting block was built by staff and students of Borden High School. Funds were raised to rent four horses for one hour a week for one year. Volunteers were trained. A Physical Therapist was ready to help guide exercises. Four applicants were accepted, having been granted permission by their physicians and parents. After purchasing riding helmets and pommel straps, the group was ready to start at 9 a.m. on July 4, 1975.

THERAPEUTIC RIDING
Therapeutic Horse Riding is a global term which embraces all horse-related activities for people with disabilities.

Historically, the therapeutic benefits of the horse were recognized as early as 460 BC and have been recognized as physically, psychologically, socially and educationally beneficial.

Some of the benefits of Therapeutic Horse Riding are an improvement in physical health, relaxation of tight muscles, an increase in balance, building of muscle strength, mobilization of trunk and pelvis, sharpening of hand/eye coordination, improvement in social skills, and a gain of sense of control and self-confidence as the rider experiences a freedom which has often never been felt before.

Here is the link: http://trott.ncf.ca/index.html


KP