Ariana lives with her parents, Irene and Alan, her little brother Lucas and her newborn baby brother. She is a typical 7-year-old girl who is quite into fashion and Barbies. She loves to dress up and get all dolled up with her hair, makeup and nails. Her love for pretend play extends to a year-round celebration of Halloween and dressing in costumes, such as a doctor’s outfit – which seems to give her confidence in new social settings. Ariana also happens to have a dual diagnosis of Down Syndrome and ADHD, the latter causing major anxiety, hearing sensitivities and impulsivity.
Irene recalls how Ariana’s Down Syndrome diagnosis caught them off guard since multiple prenatal genetic tests had come back clear during her pregnancy. Born a healthy baby in Ajax, she was placed in the NICU for breathing and a heart murmur. Since there was no cardiologist on site, it wasn’t until two days after birth that the hospital pediatrician would share the diagnosis with her parents. “My Mama Bear came out; I put my armour on. My husband was hit hard with denial and fear. There are photos of him holding her with complete acceptance, but he was so scared,” recalls Irene.
As first-time parents, the overwhelming feeling of a new diagnosis threw them into a world of medical information, and they were forced to grow thick skin. Irene walked through the Grandview Kids doors with 3-month-old Ariana and found a community to help them through this journey.
“It was the first time anyone said congratulations. Everyone flocked (around Ariana) like angels; therapists wanted to see the cute baby and comment on how beautiful she is,” says Irene. Grandview Kids’ staff fully embraced Ariana in a way she had not experienced yet. “I learned that my delivery of Ariana’s diagnosis to others would be reciprocated. They would mirror how I was feeling, whether it was in a positive or negative way.”
At Grandview Kids, Ariana’s family accessed medical services, physiotherapy, occupational therapy, speech-language pathology (SLP) and social work. Through SLP, Ariana’s speech has greatly improved. Ariana went from completely non-verbal to speaking small words, stringing several words together and now sentences. The family is particularly thankful to have Dr. Hunt as their developmental pediatrician, who has helped in navigating Ariana’s crippling anxiety and impulsive thoughts/behaviours that affect her daily living at home, school and in her community. The trust they have formed over the years is fostered by relationship building and understanding the family’s concerns and needs. Anxiety medication has opened a world of possibilities for Ariana. The family enjoys attending auto shows together and a newfound love for bowling, which would not have been possible before the medication.
Over the years, Irene realized that Grandview Kids wasn’t just there for Ariana; they were there for the whole family. Meeting with Ariana’s therapists and her social worker, Stephanie, was akin to seeing a friend she could talk to. At Grandview Kids, Irene felt safe enough to ask questions like how to deal with strangers who would be mean and/or ignorant with their words or questions. This is where Irene realized she also needed to care for herself physically, emotionally and mentally. Social work service was a way to gain community connections and provided a safe space to cry when overwhelmed, releasing her from her own fears and the stigma tied to PTSD from a traumatic birth, which made a huge impact on her personal life.
“If I could go back in time to that first year, I would tell myself that ‘it’s going to be okay.’ That beginning stage feels like tunnel vision. I wish I looked at Ariana as Ariana and not her diagnosis. I was robbed in a way in the first year. Don’t look at your child as the diagnosis/disability; look at them as your unique baby/child. You grow with your child, and I am not the same person as I was and I’m thankful for it. We love every ounce of Ariana’s Down Syndrome diagnosis. If there were a pill to take it away, we would never take it. It’s what makes her Ariana, and it makes life interesting,” Irene proudly proclaims.
