top of page

Owen

Right from 16 days old, I could sense that something was different with Owen. He experienced such extreme irritability, hyperactivity, and sleep struggles throughout his first year of life that a diagnosis of “colic” was no longer acceptable to me. Owen would scream hysterically to the point of hyperventilating, shaking, and changing color for 12+ hours every day lasting nearly an entire year. During these hysteric episodes, there was absolutely nothing that could stop it or calm him down. His longest stretch of hysteria lasted 52 hours straight, yet doctors assured me “that he was fine”. Owen was also never able to sleep. His first year of life, he never slept longer than 28 minutes at a time, day or night. His 28-minute sleep chunks never totaled over 6hrs a day from 16 days old until after he turned 1. Most newborns sleep upwards of 20hrs a day reducing down to 15 hours by the time they are 1 year old, yet Owen was sleeping 6 hours a day and only in 28 minute chunks separated by hours and hours of hysteria regardless of his age. After being dismissed by multiple medical professionals and pediatricians, I began looking for answers on my own. I self-referred Owen to Wascana Rehab, the early childhood intervention program, and kids first. I sought out private occupational therapy, speech and language therapy, physiotherapy, music therapy, massage therapy and chiropractor evaluations for Owen. We learned sign language in hopes that having the ability to communicate may relieve some of his frustrations. We also tried multiple sleep training methods following each one perfectly, with no success or improvement in his sleep. I also began an elimination diet to rule out dairy and other common allergies that may possibly be causing gas or discomfort through breastfeeding. However, nothing changed, and things just continued to spiral. Eventually, when Owen was 13 months old, after both Wascana Rehab’s intake department and 2 pediatricians realized that they had no suggestions to offer me because I had already tried everything they could think of, they finally requested an abdominal ultrasound, urine analysis and blood work to rule out any potential medical causes for his “difficult temperament”. When everything came back clear, we were referred to Wascana Rehabs complex diagnostic unit and put on a waitlist to see a developmental pediatrician. Later, we met the most incredible diagnostic team who spent nearly 4 hours with Owen and I at our first meeting. They listened and did not dismiss my concerns. They asked the right questions and observed his behavior, his interactions, his communication, and his play. We left this first appointment with a diagnosis of autism spectrum disorder, and everything finally started to make sense. At 15 months old, Owen one of the youngest people in Saskatchewan and in Canada to be diagnosed autistic.Now that we finally had answers, I thought that we would receive more tailored support and intervention through the publicly funded programs that we were previously connected with. Unfortunately, with an autism diagnosis you immediately lose all public service and support programs and instead begin a never-ending battle against discrimination and exclusion. Owen’s autism diagnosis resulted in being immediately released from Wascana Rehab, which meant that our speech and occupational therapy referrals disappeared.


We were also released from ECIP (Early Childhood Intervention Program) after waiting 11 months to get in and being in the program for under 24 hours, and we were informed that due to his Autism diagnosis and despite successfully being in the program for the last 15 months, that the Kids First program could also no longer support us. In turn, we were left with absolutely no support at all. In addition to losing every support that I worked tirelessly to get for Owen over the last 15 months, we were also now facing discrimination and exclusion from ministry licensed daycares.


We were told by our developmental pediatrician, that the only way Owen would ever be able to attend daycare was if he had a 1 on 1 support person, and that support can only be offered through ministry licensed daycares. Regardless of my efforts and advocation, not a single licensed daycare in Regina was interested in Owen after he received his diagnosis. Furthermore, despite being on many waitlists since I was 4 weeks pregnant, we no longer had any chance of receiving an inclusion grant as we magically disappeared of every waitlist that I had been on for over 2 years already. No one cared to get to know him, no one cared about his strengths or specific challenges, the second they knew that he had an autism diagnosis and that he would benefit from an inclusion grant through the ministry, the conversation immediately ended. It was so disheartening and emotionally and mentally exhausting, to experience constant discrimination and exclusion day after day after day.


​One-year post autism diagnosis, Owen’s second developmental pediatrician determined that there was more going on in his development. We left the appointment learning that Owen is also an ADHDer and requires an intellectual assessment prior to entering the school system to determine his educational path and programming.

Despite the many challenges that we face on a day to day basis, Owen continues to surprise us and surpass the expectations that were set for him by multiple medical professionals. He has successfully transitioned into a private day home with no 1 on 1 support, thanks to the most caring, accepting and nurturing human being on the planet, who welcomed him into her daycare family with open arms. His speech and language skills have also now caught up to his same age peers, and he displays shockingly advanced gross motor and memory skills. Owen is now sleeping 10 hours straight at night, which is quite unbelievable considering where he started with his 28-minute sleep intervals. Owen exhibits tremendous strength, drive, perseverance, courage, and curiosity. He has no fear and constantly surprises us. He enjoys Lego, dinosaurs, music, coloring, painting, climbing, jumping, and running. Owen is extremely empathetic and is such a loving and caring little boy. We will continue to spend every ounce of strength that we have to advocate for support, acceptance, and inclusion in a neuro-affirming community where people are not discriminated against for being different or for not conforming to neurotypical norms. He is different, not less, and he deserves the same respect, dignity, and support as any other child. I will continue to advocate until that becomes a reality for Owen and so many other children in this province.



 

4 views0 comments

Recent Posts

See All

Comments


bottom of page