Kim is a happily dedicated mother to Remy and his sister. She enjoys healthy eating, organic gardening, supporting local small businesses and contemplating the beautiful wonders of the universe.Remy is a big, strong and fun-loving little boy. He enjoys spending time in his Son-Rise Play Room, riding his bike, taking wagon rides and running around in the garden. Remy enjoys good food just like his Mommy.
Our Story
Alex and Kim were blessed with their first child during a beautiful mid Spring in 2006. Remy's birth was memorable, quick, painful and beautiful. From the moment they lay the baby on Kim's belly, the journey of a new life was born. At 18 months, Remy moved with his parents out of the city to a surrounding town. A few short months later, they welcomed Remy's sister into their family with open hearts.
Now, up until the birth of his sister, Remy was developing typically: he hit all his milestones, he was using Chinese, baby signs (some signs from ASL) and starting to emerge with his English. In addition, he had already begun to sit on the toilet to routinely do number 2 by this age (21 months). He was very social, talked on the telephone, passionately greeted cashiers, people on the street, family, friends, etc. Remy enjoyed making animal sounds, pointing at pictures in books and naming what he pointed at. He was very interactive and connected with people and animals (we had two lovely cats).
Around the time of his sister's birth, Remy started "regressing" with this toileting as well as sleeping in his bed. In fact, there was a time period when Remy would cry and cry hysterically at bedtime like he was terrified of something. Unfortunately, Alex and Kim had previously read a book at letting your baby cry until he went to bed. This went on for what seemed like weeks. Also, Remy started to really get upset if he didn't get to watch TV (something that had not wanted, but thought would be helpful for the initial period of having his sister - we no longer have cable). The programs he watched were the same (Baby Channel) over and over again. Remy would no longer say the names of family members, refused to talk on the phone, refused to greet or look at people. He started to stop using words that he had previously mastered.
A few months passed, and Kim started to wonder more deeply about Remy's "regression". She didn't want to come across as a worried parent, but at the same time wasn't sure what to do. The concept of "autism" had crossed her mind a few times only to be smothered with thoughts of "it can't be" simply because she didn't want it to be.
By June, she brought him to a Ready-Set-Grow Information Day. The Speech Language Pathologist asked Kim some questions about Remy's language development. Every answer was either a "no" or "he no longer does that". She put him down on the wait list to be assessed... he was on the wait list for well over a year.
Also in that same summer, the family would purchase their first home, and by early autumn, he children were in a new home. Moving solve the night time terror cries, and Remy seemed to sleep well knowing that both parents and his sister were on the same level as he was. However, it was every morning that would become disturbing. Remy would wake up and start babbling like an infant. He would run to the bay window, stare out, babble to himself, smile and never look anyone in the eye. He would spin himself around and around. He would look at clocks and fans obsessively (he even said those words).
Something was obviously not right, yet the denial was too strong for them to do anything about it except deny it. Emotions of fear, guilt, anger seemed to rule the house at times. Finally, it became clearer and clearer to Kim that her child might have autism. She started researching more and more on the subject. She had only brushed lightly on the subject at Teacher's College and had only worked with two autistic children in her life, and Remy was not like any of the two.
Now it was Alex's turn to seek help. He was amazing. Within a day of deciding that his son needed help (or that his family needed help with his son), he found an agency to come into their home to do an initial consultation. The consultant left them with a basic understanding of autism, and what character traits Remy exhibited that might give him the diagnosis of autism: a language delay or regression, a social disconnect and an exhibition of repetitive behaviours (stims). Now, no one can diagnose except for a developmental paediatrician or a developmental psychologist, so we had to wait... had to wait... Luckily, the agency was able to help us get a sooner assessment date.
While we waited, we researched, read lots of books, talked to people, searched on the Internet for information. There was just SO much information... and there still is. It was overwhelming. With a pre-toddler, and a special needs child, it was quite challenging to do all this. Sleep of over two consecutive hours for Kim would not yet present itself until much later.
Nonetheless, it seemed like they had come up with a plan to tackle this autism. Out of all the books Kim had read up to that point (she continues to read books and research today), Overcoming Autism written by PhD Lynn Kern Koegel and Claire LaZebnik (a mother with a child with autism) resonated
Another way of treating autism was through biomedical intervention. Kim's friends, who were familiar with working with families or children with autism, heard that diet was becoming more and more successful at helping reduce the symptoms of autism. So, Kim studied it a lot. Now, by this time, Kim had already known that diet plays a huge part of everyone's life, so it was no surprise that they would give biomedical a chance.
Although the developmental paediatrician recommended ABA therapy, she did not recommend biomedical intervention as it was "not proven" to work. Remy was again put on more wait lists for funding. There is a program run through Kinark called the Central East Autism Program (CEAP) in Durham Region that is supposed to provide families funding for ABA therapy. That sounds good. Everywhere that Kim consulted, she learned that the earlier a child receives intervention, the better the chances of the child getting "better". So, seeing that this window of opportunity would close itself as the child ages, access to funding for therapy should be immediate. Well, the wait list takes about 4 years to get through. And there is also red tape, assessments and reassessments involved.
So within a week of finally receiving Remy's autism diagnosis, the family had found themselves a Defeat Autism Now! (DAN!) doctor as well as a private ABA therapist. They removed Remy from his nursery school program (where he was wandering around by himself anyway), and launched him into a 20 hour/week ABA home program. A few months later, they would also hire a private Speech Pathologist as well as send Remy to a special nursery school where he would receive private speech therapy twice a week with a Communicative Disorders Assistant (CDA).
Private ABA and Speech Therapy Costs
Let's do some math here. The home ABA program cost $25/hour (which is actually a really good deal) at 4 hours per day. So, this was $100 a day at 5 days per week, making it $500 per week! Now, let's add in the special nursery school at $495 per month. In one calendar year of 52 weeks, this all adds up to:
Private home ABA: $ 500 x 50 (two weeks of unpaid holiday) = $ 25,000
Special nursery school: $ 495 x 12 = $5940
= $30,940
This amount excludes after school care.
Biomedical costs
Initial visitation with DAN! doctor: $400
Live Blood Analysis: $60 once a month, making it $720 a year
Supplements like Cod Liver Oil, Liquid B, probiotics, enzymes, calcium, homeopathic drops, Kirkman Lab powder, methyl B12 shots, chelation pills,
Gluten-Free Casein-Free (GFCF) foods
Far Infrared Ray (FIR) sauna: $4000
The costs were adding up. ABA didn't support biomedical intervention, and it also disagreed with some of the principles that were used at the special nursery school run by a speech pathologist. There were little conflicts of beliefs amongst professionals. After a year of ABA therapy, Remy didn't seem to progress anymore. I believe it was the emotions that were running around amongst the adults that reflected in him. Although the ABA therapist tried to respect our biomedical and special diet restrictions, she made it clear that she could not support the diet (we were implementing a SCD - specific carbohydrate diet, at the time) Remy was on because it limited what "motivators" she could give him to get him to complete the trials he "needed" to do. More and more, Kim started to feel that that something had to change. Alex knew this too. Money was scarce, and negative emotions were taking over their home.
Drastic changes occurred in summer of 2010: they let go of their private ABA therapist, reduced Remy's special nursery school hours, let Remy off his special diets, and put their house up for sale so that they could move to a city where they thought Remy might receive better service.
Well, long story short, Alex got introduced to the Son-Rise Program (R) and the Autism Treatment Center of America (TM) while trying to find out about autism services in the new city they were planning to move to. The house didn't sell, but the family started to get to know about the SRP.
Despite the money scarcity, Kim attended the Start-Up Program in December 2010... met LOTS of great people with extraordinary and amazing stories... went home... dealt with some sickness... Alex put the Playroom together... and that's how Remy's Room was born.
