21 Weeks: Stories & Advocacy

As a storytelling photographer, it is my goal to make documentary family photography accessible for all medical, special needs, and palliative families. As an educator, medical mom and advocate, my goal is to offer my voice to those working to ensure our government is providing ALL families with appropriate access to education and healthcare. Perhaps the stories I tell with my camera can provide some insight into the lives of medical and special needs families. Or maybe my images and words can help highlight the fact that if we don’t take care of each of these kids and their caregivers it will affect everyone. Every sibling, every parent, every classmate, every educator, every healthcare provider, every tax payer. Every.Single.Person.

My original hope for the 21 Weeks projects was to highlight the strength, resilience and hope that is necessary when advocating for your child in the medical and education systems. The project focuses on Melanie and her daughter Ella, who is diagnosed with Rett Syndrome.

Prior to the pandemic, Melanie and I had so many plans for how we would document Melanie’s caregiver role, as well as her and Ella’s relationship. Early on in our story planning Melanie had explained, “We have therapy with Ella’s aide on Wednesdays from  12:00-3:00 and Thursdays from 11:45-3:00. We are either in our house, outside, at Elevation Place or at adaptive gymnastics at this time of year. It is usually during these times that we also see one of Ella’s four therapists. Other times Ella’s aide takes her and I have a little respite time.” And for the first ten weeks of the project, we did get to photograph some of those things; a skating day, Kindergarten pick up, their Rett Syndrome clinic day in Edmonton.

Then Covid-19 hit and the circumstances changed with physical distancing and safety protocols becoming a priority to keep our communities safe. No longer were we able to document Melanie and Ella’s everyday; life at home, the sensory room at school, therapy appointments, Ella’s adaptive bike fitting. Due to Covid-19 a big part of their story is missing from the project.

The following ten image slideshow is what I submitted for my final 21 Weeks critique. The 21 Weeks project has officially ended. But Melanie and Ella’s story has not. In some ways it is just getting started.

Due to Covid-19, life has changed.

The past few months have drastically changed the stories of medical and special needs families. Covid-19 definitely played a part in these changes, with kids and parents working and learning from home, education support staff being laid off, respite workers and therapists unable to provide in home services, and medical appointments and procedures being cancelled. Many parents, whether they have children with special needs or not, are overwhelmed.

But that is not the whole story in Alberta.

I am increasingly concerned about what life will look like for medical and special needs families once things do return to “normal”. Alberta’s healthcare and education services WILL NOT return to pre-Covid levels of programming. And whether you consider yourself a medical family or not your children’s lives will change because of the cost-saving measures being rolled out by our government.

As I was writing this blog, Melanie was also writing…

“See this gorgeous girl. She is complicated. She has spent more of her short life receiving therapy, medical specialist appointments and having a special aide, than not. Ella is 6. Ella has a rare genetic disorder called Rett Syndrome. She needs HELP to live in this world of ours; to learn the steps involved in putting her clothes off and on, using a speech device, holding a spoon and learning to sit to attend in a classroom setting. All help that trained specialists have provided. I would have been lost without it. She has come so much further in the last 3 years than I thought possible.

Yesterday, I got a sucker punch to the gut. News that makes you scream and cry and swear in front of your kids and want to hide under the covers. The Program Unit Funding (PUF) that 3-6 year old kids in Alberta get is being DRASTICALLY cut. The organization that provides it in our small town can no longer do that next school year. The impact on families here is unbelievable. Ella will be aged out shortly, but I can’t bear to think of those losing out. Let alone those we care about losing their extremely meaningful jobs.” 

– Melanie, Ella’s mom, caregiver and advocate @rockymtn_rettmama

But friends, what do we do?

Caregivers, families, educators, healthcare practitioners, anyone who has experienced early intervention supports understands just how crucial these programs are. While living in Edmonton, my son, Kane, received two years of PUF funding and early intervention speech supports through Community Options. I myself worked as a grade one teacher within a school that had a large population of PUF funded students. Since re-locating to the Bow Valley I have met so many families who are supported by Cause and Effect. But that support has come to an end.

What can families who have received early intervention supports do?
What can families who have not yet had access to the supports do?
What can educators and early intervention providers do?

I do not have the answers to these questions. This is where I need your help. What do we do? How do we make our voices heard? We need a clear action plan that we can all get behind. Our stories are powerful individually, but stronger together.

I am looking for information specific to Alberta and the Bow Valley. What is the most effective way to be heard? Who do we talk to? Please comment below with any and all suggestions. I will begin compiling a list. If you are in the Bow Valley and want to be a part of the conversation about how we support local families please get in contact with me, even if you don’t have all the answers. We’re in this together for much longer than 21 weeks.

What we don’t do is leave these kids behind.

Thank you to Chronically Simple for the gift of these sessions.