I still remember the silence in the room when our pediatrician told us that our baby girl was blind or visually impaired. Time seemed to stand still, as hundreds of questions ran through our heads.
When Alynah was only a few weeks old, I noticed that she wasn’t making eye contact while nursing. Soon after, I noticed that her eyes seemed to wander from side to side.
This was a very dark period for me, and I cried a lot. As a mom, it was deeply painful that my baby wasn’t looking or smiling at me. Not being able to bond with Alynah was incredibly hard. I tried to reassure myself, hoping she was simply developing at a different pace than her older brother.
I quickly raised my concerns with our pediatrician. After doing a few tests, she uttered those words that would change our lives forever.
After a week of waiting that felt like an eternity, we were seen in the ophthalmology department at the Montreal Children’s Hospital. Alynah was diagnosed with a form of oculocutaneous albinism, a rare genetic disorder that causes extreme nearsightedness or farsightedness, poor depth perception, and high sensitivity to light.
I knew immediately that I needed a referral to the MAB-Mackay.
Raising a child with a visual impairment is filled with anxieties, worries and fears every day. The fear of the unknown is immense when you have no way to truly understand what your child is going through. From our very first meeting at the MAB-Mackay, we were relieved to be surrounded by an amazing group of professionals who specialize in taking care of children like Alynah.
Since we first walked through the doors of the centre, they’ve supported us through every hurdle and challenge, cheering Alynah on. They understood why Alynah wasn’t adventurous beyond her small comfort zone that she was able to see. If Alynah couldn’t see the cues (such as her parents or her toys), then she wouldn’t have the curiosity to go towards them or reach for them. As a result, other areas of her development could be delayed.
Knowing that vision accounts for more than 80% of early learning, our therapies at the MAB-Mackay initially focused on encouraging her to explore outside her limits. They even visited us at our home, to help us ensure a safe environment for Alynah and to arrange things in a way that would promote her development and exploration.
It gives me goosebumps when I think of how far she’s come in such a short period. From not even crawling when she first began her therapies, she’s learned to stand, cruise and walk in a very short period of time. Most children with this condition reach these milestones much later, and I credit the team and resources at the MAB-Mackay for her amazing progress.
Now that Alynah was walking, we encountered a new set of challenges. She began to seek her independence, often in unsafe ways that we were unable to predict. Due to her lack of depth perception, she would actually launch herself down the stairway of our home. Luckily for us, she didn’t get hurt. A specialist from the MAB-Mackay taught Alynah how to navigate stairs using her other senses; to feel the steps with her feet, to hold the wall with her hands, and to listen for auditory cues like her shoes on the floor. We also learned as parents how to balance supporting her independence while ensuring her safety.
Despite this amazing progress, Alynah still wasn’t speaking. At 15 months old, she hadn’t even said “mama” yet. It was becoming difficult to assist Alynah with her needs with virtually no vocabulary, and her frustration was becoming very apparent. We soon recognized that this delay was due to her inability to see how we formed sounds with our mouth. Our speech pathologist from the MAB-Mackay gave us important tips that allowed Alynah to copy us. I started to wear bright red lipstick, and placed her hand over my mouth so she could feel how I made the sounds.
All of these strategies have helped Alynah to shine and demonstrate all that she is capable of, in spite of her visual impairment.
Knowing that vision accounts for more than 80% of early learning, our therapies at the MAB-Mackay initially focused on encouraging her to explore outside her limits.
Our story doesn’t end here.
Alynah is like most children her age. At two-and-a-half-years old, she’s full of spunk and personality. She loves to play, to spend time outside (sunscreen and sunglasses included), and to be with her dogs Snoopy and Pancake.
Alynah’s impairment is invisible, but always present. Because she looks like other children her age, it’s hard to see her struggles. Simple tasks that other children take for granted are hard for her. She can also become overwhelmed by the stimulus around her such as loud noises, movements and strangers. As she prepares for pre-school next year, it’s very reassuring to know that the MAB-Mackay is here to assist our daughter with the challenges she’ll face as she grows up.
Rebekah, Alynah’s proud mom
P.S. The MAB-Mackay has showed us – and shown Alynah – that there is no such thing as “can’t” when it comes to children that are legally blind. As a parent, this is truly priceless. Thank you for transforming Alynah’s life, and the lives of so many others at the MAB-Mackay every day!