Be An Advocate

Recently I was able to speak up on behalf of my daughter and I am choosing to share it because I think it points to a bigger issue.

This is not meant to be a negative post. I understand no one person, organization, or process is perfect; there are going to be issues along the way. By sharing this experience I want to focus on the importance of using your voice and asking questions in hopes of gaining clarity and occupying your agency to support and advocate for your child (ren); when you do, people listen and resolution can take place.

A bit of background….

Every year, Sheriauna goes to Holland Bloorview in Toronto, ON to see her prosthetist and OT (Occupational Therapist). These visits include device checks to ensure the prosthesis is working properly, fitting correctly and if needed repairs are made. The prosthetists at Bloorview do their best to ensure that children get the most use out of their devices for as long as they possibly can, while the OT ensures Sheriauna is still able to use her prosthesis correctly as she grows.

This past summer Sheriauna outgrew her recreational limb which is a passive arm that allows her to do many different activities by adding attachments to the “wrist”. It was becoming very uncomfortable for her to squeeze her arm into the socket. One of the most important attachments she has for this prosthesis is her mushroom tumbler which allows her to do acrobatic arts and various tricks in her dance routines. Her prosthetist did several adjustments to the device she had outgrown before she was finally fitted for a new one. The process began this past fall when her cast mold was taken, however, due to a backlog we were told we may have to wait longer to get a call for a fitting appointment.

Sheriauna does not normally make an issue about having to wait for new prosthetics but as we approached January there was concern as to what was taking so long. As a competitive dancer, she relies on her passive limb with mushroom tumbler to provide support and create balance for many of the techniques she is learning. Sheriauna started to develop a strain in her right arm due to the wear and tear of relying solely on her right arm in dance. Sheriauna was also getting very frustrated and unhappy with her progress in some of her dance classes as she was unable to complete even the modified movements correctly without her prosthesis.

Throughout the waiting process I was in communication with Sheriauna’s awesome prosthetist. After more waiting and seeing the impact to Sheriauna, I decided to contact The War Amps as the funding was still pending. Secondary limbs such as recreational ones are not fully covered, most of the time, by the Ontario Health Insurance Plan (OHIP) so we rely on private insurance, if available through your employer, and/or The War Amps. The War Amps being fully funded by donations means that they make every effort to ensure the majority of their funding goes to helping child amputees (Champs) though their programs which include approving funding for prosthetic devices and repairs.

My experience…

When I called The War Amps’ head office I spoke with an administrative staff person who explained that in order to make sure the financial donations continue to be directed where it matters most, the children, they have had to downsize their staff which has contributed to delayed wait times for families and children to have their funding approved. Combine this with an influx of new child amputees to the organization and that means more requests for funding new limbs and therefore delays in approvals. I explained my situation, she took my daughter’s information to see if she could find the estimate request, only to be advised there was no estimate in the system. I know that the administrator at Holland Bloorview sent the estimate request in at least once so I requested to speak with the department or person in charge of funding approvals. I was told that they could not come to the phone as they were very busy reviewing funding requests; speaking with me would further delay the process. There was also no timeframe for a call back once a message was left. No 24-48 hours callback guarantee could be given. She attempted to empathize with me by saying she understood that I was upset. I stopped her and made it very clear that I was not upset but rather concerned and frustrated. I acknowledged all of the effort that the organization makes to ensure the needs of each child is met and the work that they are doing to meet those needs with limited resources. I also stated my concern about how these efforts may impact the process of reaching the goal intended. I expressed the importance of carefully choose your words because words hold power (yes I said that).

In many scenarios my assertion and my confidence in communicating directly and passionately about the topic at hand has been interpreted as anger, aggression, and simply put me being a “mad Black woman”. I am deemed to always be upset or angry when I speak up for myself or my children. As a woman, specifically as a woman of colour, I have had to learn the art of refining the way I speak and constantly thinking about what I am going to say, also the ways in which the receiver of my words is possibly going to perceive what I am saying. Mostly, it’s received well but when I assert myself there is a shift in the energy of the conversation. I have grown to not be afraid to correct someone’s judgement. I cannot change ones perception but I can clearly state my intent or label my feelings correctly so that my delivery and their perception hopefully align a bit closer together and we can continue to effectively communicate.

After me clarifying my emotion, the employee may have labelled me as angry or maybe they truly understood that I was a concerned mother who wanted to resolve an issue. Regardless, within the next few days, Sheriauna’s estimate was re-sent and her funding was approved. So in short, do not be afraid to use your words and your voice to advocate for your children and yourself. Do not apologize for asking for or stating what you need and when you get it, take pride in that.