“A” Remarkable Journey

Have you ever been so excited about going on a trip somewhere you have never been before? You know somewhere fabulous like Italy! Then, following all of that excitement and preparation, your destination changes and you are now going to Holland!

This is the premise for a beautiful poem entitled, “Welcome To Holland” by Emily Pearl Kingsley. This poem perfectly captures what it means to become a parent of a child with special needs and it has been on my fridge since the winter of 2004.

“A” remarkable journey began when my oldest son Luca was approaching his second birthday (2003) and he was still not speaking. Fortunately for me and most especially for Luca, his pediatrician is a well-informed and very open-minded medical professional and so together we began the first steps on what would become a truly remarkable journey.

Luca’s pediatrician requested that Luca be evaluated at the Montreal Children’s Hospital Developmental Clinic, and seeing as the waiting list was approximately one year, she advised me to go private.

Much more to the point though, our pediatrician explained how Luca would eventually be evaluated at the multi-disciplinary Developmental Clinic and to attempt to find the same services privately, which of course is what I did. Luca was seen by a speech and language pathologist, occupational therapist, as well as a developmental psychologist.

My beautiful little boy’s profile began to emerge and although he is exceptionally big for his age, he was found to have a very marked delay in his speech coupled with a very marked delay in his gross and fine motor skills (i.e. jumping, running, and writing skills), as well as a developmental delay (i.e. Luca was not behaving like a typical two and a half year old). So, faced with this news and having already begun both speech and occupational therapy (both privately), additional sessions with the developmental psychologist were also added to Luca’s increasing intervention at the start of 2004.

Luca also began frequenting a wonderful adapted gym and swim program that he still attends today, as well as a specialized pre-Kindergarten; both are located in Pointe-Claire! It truly was Luca and I against the world as we traveled to and from Laval to Pointe-Claire, first by public transportation (the train and two buses!), and then following a lengthy battle, by adapted transport!

Meanwhile, with all the therapy and specialized programs in full swing in May 2004, Luca was finally evaluated at the Montreal Children’s Hospital, as well as the Douglas Institute (just to cover all the bases!). For the multi-disciplinary team at the Children’s, Luca’s profile was not clear-cut; the team was divided between an official diagnosis of G.D.D. (Global Developmental Delay) and P.D.D. (Pervasive Developmental Disorder, i.e. Autism). The Developmental Clinic referred Luca to the Autism Clinic, all the while ordering a battery of tests, as well as referring Luca to Genetics, Neurology, and Endocrinology, where many more tests were ordered. My beautiful little boy was poked and prodded to no end, and I continued to ask all of this of him and then some, with his therapy and programs still ongoing. (My heart breaks a little even now, so many years later, as I write this.)

Luca’s profile at the Douglas was much clearer and that was when I heard it for the first time; “Luca has Autism”. During the car ride home, I cried for the first time.

Hence, “A” remarkable journey—Autism, that word would come to affect my life like no other word before it or ever since. The following year, The Autism Clinic at the Montreal Children’s Hospital would also confirm this diagnosis. So you see, it was fate that I discovered the poem, “Welcome To Holland” when I did, for it would guide me to seek out all of the information that I could about Autism.

The very first sources of information would be W.I.A.I.H. (West Island Association for the Intellectually Handicapped), as well as the Hanen Program offered through W.I.A.I.H. (Hanen is a speech and language program based on the fundamentals of communication.) Not to mention the inspirational speech and language pathologist who ran the program at the time (a mere 75 years young!), and her longtime collaborator, an experienced educator and mother of a special needs child herself. And then a most fateful encounter, at the first of many lectures I have attended over the years, I met Luca’s longtime psychological-educator at W.I.A.I.H. She would begin working with Luca during the summer of 2004 and our collaboration is ongoing! She would become the foundation of the team that I would build around Luca. I’m sure you have heard the expression “it takes a village to raise a child”, well when you are referring to a child with Autism, it takes a specialized and dedicated team!

Eventually, Luca’s intervention would move from Pointe-Claire back to Laval when his placement both at an integrated daycare, as well as the only Readaptation Center in Laval (CRDI Normand-Laramee) became available in the fall of 2005. At the same time, Luca would continue his private therapy, now through the EAST Foundation (EAST for the east-end of Montreal), a remarkable grass-roots organization founded by dedicated mothers, who came together in order to provide their special needs children with services in English. The following year, in 2006, Luca began his elementary school education at Crestview Elementary (in Chomedey, Laval). Luca is now eleven years old and will begin his last year at Crestview in September 2012!

I am reminded time and time again through Luca’s remarkable journey what a privilege it is to be his mother, and how he has expanded my horizons beyond anything I could have imagined for myself! I am profoundly grateful that my initial tears turned into a journey of enlightenment and empowerment for both myself and my son! And I always go back to one of the very first sources of information, a nurse at my CLSC who said, “Remember the best thing you can do for your child is love him.” Thankfully Luca is so loved by not only me, but also by his adoring father!

You would think that the journey would end here, but it doesn’t as I have a younger son Alessio, who was also diagnosed with Autism.

Alessio, who recently turned four at the end of May 2012, was diagnosed with Autism officially at the CHARL (Centre hospitalier et ambulatoire de la region de Laval), in the fall of 2011. When Alessio had his ADOS (Autism Diagnostic Observation Schedule; the main diagnostic tool to assess for Autism) completed in the fall of 2011 at the CHARL, it brought me back to my early days with Luca.

It was a terrible blow and I had the overwhelming feeling of having just been punched in the stomach! Even though the Autism had not presented itself in the same way as it had for his older brother, Alessio began to have tendencies around his second birthday.

The risk is always greater once you have a child on the Autism Spectrum to have a subsequent child with Autism or a related disorder.

(The Spectrum indicates the varying degrees of this neuro-developmental disorder).

However, this time around, the process would be very different for Alessio for two main reasons; one, I had since become a lay expert in Autism and two, there were new ministerial directives in place (by the Ministry of Health and Social Services, MSSS)

that would not allow for Alessio to be diagnosed at the Montreal Children’s Hospital; he would have to be diagnosed locally here in Laval.

Of course Alessio was diagnosed privately, like his older brother, in order to once again move through the process more quickly. Seeing that Alessio’s only compromised area of development was his speech, his only evaluation that was carried out privately was by a speech and language pathologist. Once she completed her evaluation, as well as a formal observation of Alessio at his home-based daycare in Laval West where we reside, Alessio’s case was unclear. His tendencies merited further consideration and he would have to be seen at the Developmental Clinic of the CHARL, in order to assess for Autism. (There was that word, again!)

All the while during the far too lengthy waiting period for his evaluation at the CHARL (sixteen months, to be precise!), Alessio continued to be as fully supported as possible at his home-based daycare by his speech therapist, his specialized educator, and of course his home daycare provider. Alessio’s daycare provider (with much support and assistance) would finally embark wholeheartedly on the journey of becoming a member of Alessio’s team! She after all had the perfect background for it; prior to opening her home-based daycare, she had worked at a specialized school for children with Autism and she is also the mother of an adult son with special needs. Alessio, like his big brother Luca, would also benefit from the EAST Foundation, as well as the adapted gym and swim program in Pointe-Claire.

When Alessio finally received his official diagnosis of Autism Spectrum Disorder from the CHARL, his file was then transferred to the CRDI Normand-Laramee

(CRDI N-L) in November of 2011, in order for Alessio to then be able to have his placement at L’Etincelle, the specialized pre-Kindergarten of the CRDI N-L for children with Autism (just as Luca had before him). At least that was my assumption, but I would come to learn this was not the case! In February of 2012, Alessio was denied his rightful place at L’Etincelle (for September 2012) and consequently would miss his only opportunity for this intensive multi-disciplinary intervention.

I distinctly remember how incensed I was when I learnt of this, and how fitting it was that I had gained all of the knowledge and the experience that I had during my journey with Luca that would now serve me well for Alessio. For as remarkable as the “A” journey had been for me in Luca’s case; the “A” journey for Alessio was about to go to a whole new level!

In March 2012, I filed an official complaint against the CRDI N-L to the local Commissioner of complaints and quality of service. My argument was very simple; Alessio’s needs and rights were not being respected and this simply because he requires his intervention to be in English. I implored the Commissioner to consider the systemic discrimination against the Anglophone clientele of the CRDI N-L based on this argument and I cited all of the relevant information that was needed in order to support this argument. And so I waited with bated breath to receive the Commissioner’s conclusions and recommendations. I received his letter in May.

(Note; Once an official complaint has been filed, by law, the local Commissioner must render his decision or at the very least, a summary of where the process is at, within 45 days of having received the complaint.)

When I received the Commissioner’s letter (the day before my birthday!) in May 2012, it was profoundly frustrating that not only did he not make any comments whatsoever on the principal point of my argument, he also made no formal recommendations neither! I was simply dumbfounded! I then spoke with the Commissioner the following day (on my birthday—Happy Birthday to me!) and in thanking him for his time, I made him aware of my consternation as to his letter.

More importantly, I also made him aware that seeing as I was in disagreement with his conclusion that the CRDI N-L had acted in good faith, I would now go above his head, as was my right to do so, to file my complaint with the office of the Protecteur du citoyen.

(Note; If an individual is in disagreement with the decision rendered by the local Commissioner, by law, it is your right to take the matter to the office of the Protecteur du citoyen.)

So, in June 2012, I delivered my official complaint in person to the Coordinator of Investigations (Coordinatrice des enquêtes). In my letter to Madame la Protectrice du citoyen, Raymonde Saint-Germain, I responded to all of the local Commissioner’s main points and I forwarded both my original official complaint, as well as his letter.

The investigation on the matter regarding the discrimination against Alessio began on July 23^rd, 2012. The resolution that I have asked for is that in the event that L’Etincelle remains “closed” to Alessio, the CRDI N-L (as precedent stipulates) will incur the expense for Alessio to have a comparable program in the private sector. I remain confident and steadfast that a just resolution will be reached for Alessio.

(Note; Madame la Protectrice du citoyen, Raymonde Saint-Germain has published two special reports on the state of health and social services offered to individuals with Autism. The first was specifically concerning children aged 0-7; it was submitted to the National Assembly in October 2009. The second is regarding adolescents and adults and this special report was concluded in June 2012. It is quite exceptional for the office of the Protecteur du citoyen to issue two special reports regarding the same subject matter within three years.)

And so as I wait again with even more intensity this time, I am compelled to think of the bigger picture, not only as it affects Alessio, but also how this matter touches all of the Anglophone children like him, here in Laval. This is what led me to write my third and final letter to the Regional Access Committee for Access to Health and Social Services in English, in July 2012. In it, I made the Chairperson aware (as well as all of the members of the Committee; the Head of the Agence de santé et services sociaux de Laval; the Quebec Human Rights Commission; the OPHQ (Office des personnes handicapées du Québec); all of the Laval MNAs; as well as my federal MP, who were all copied on the letter), of my personal campaign of awareness that I had been waging since March! I implored her and all of the Committee members to review this matter seriously, for it is simply unacceptable that my son Alessio, and all of the Anglophone children in the same predicament, are being denied what is their fundamental right; to receive services and this in a timely manner! And this is the next level of my “A” journey with Alessio.

Now as I conclude this article, I want to implore all of the readers of Laval Families to think of the fundamentals that unite us all as parents, including parents of special needs children, and as Anglophone families. Our story is lived out everyday, here in Laval. The year ahead will be a momentous one for me, Luca, and Alessio—as Luca prepares for his last year at Crestview Elementary, Alessio will begin his first year there in September 2012 and follow in his big brother’s footsteps. For me, my life’s work continues as I strive to ensure that both Luca and Alessio excel to the best of their abilities as our remarkable “A” journey continues.