Supporting families so they can support themselves

Having a child with special needs brings not only challenges for that child, but for the rest of the family. After their daughter Treva spent the first two years of her life in the hospital, Susan and Randy Bassett noticed the lack of support for the families, both financially and emotionally. Treva’s older brother, Atticus, faced hardship and stress as well, worrying that his sister would die similar to others with her condition. Susan and Randy realized that the emotional issues the siblings of children with special needs face most often exceed that of a typical sibling and sought out finding an effective means of support.

This prompted the founding of Opening Hearts, a registered Canadian charity with a focus on assistance for families with children with special needs. This includes aid for the family during hospitalizations, helping avoid and support during caregiver burnout, as well as considering and cultivating siblings’ wellbeing.

Susan and Randy are both co-founders and co-chairs of the charity, working to oversee the running of the organization. Along with other dedicated board members, they manage marketing, financial transactions, volunteer management, fundraising, administrative work, and anything else that needs to be taken care of. As much as they are behind the scenes, operating the charity is a team effort amongst those involved. That said, the organization is 100% volunteer-run, and as such, more donors (of both time and money) is essential to continue to serve and grow their programs.

Urbanicity spoke with Susan to learn more about Opening Hearts.

Q: In terms of the organization’s values, explain Explain the Rights of the Child.

A: Quite simply, we believe that all children should be afforded the right to develop to their fullest and participate in our community and society. Since our focus is on the children with special needs, we want to ensure they are able to be a participating member of our community over their entire lives. The longest relationship they will have with anyone will be with their siblings – more than their parents, other family members or any professional. By supporting the siblings through our programs, we are hoping to enrich and strengthen this relationship which will be the benefit of all.

Q: Tell us more about Sibshops and Sibteens.

A: Sibshops are where school-age brothers and sisters (ages 8-12) connect with other peers growing up with siblings who have special needs. These have been running for nearly 35 years and we were the first to bring this program to our community from the United States. 80% of the activities with Sibshops are just for fun, to get the children to connect, while the other 20% are activities meant to get the children to open up about how they are feeling about their sibling – the good and the bad.

Recognizing the need to continue support for the participants who were too old for Sibshops, we started Sibteens, for ages 13-17. To give you an idea of the impact, one the parents told us a story about her son. After one of the Sibteen sessions, her 15-year-old son went to his older sibling with special needs, gave him a hug and said: “ I will look after you forever.”

Q: What do you see for the future of Opening Hearts?

A: We see a paid employee. We are growing and have more exposure thus there is more to do. It’s a natural progression for our organization. As we mentioned above, we see a comprehensive sibling support network in our community.

We also see the Heart Tote program growing where we giving out more totes and reaching farther into our local community, the province and Canada-wide.

Q: How has Opening Hearts changed your family?

A: It has fulfilled us by giving us a life purpose, an opportunity to give back to our amazing community. It has helped our son learn to cope with a sibling with special needs. It also helps show our son how important community work truly is. Not only does he see us at work, but he also volunteers with Opening Hearts on a very regular basis.

I once was having a chat with a co-worker. We were talking about legacies and what impacts we will leave in our community. He told me that he sees Opening Hearts as our legacy.

Q: What has this experience taught you?

A: It has taught us how challenging it is to run a charity. There were times when we were so drained that we considered wrapping it up. But then a call from a parent or a comment from someone on social media would arrive– which served to remind us how important our work is and that it’s making a difference for the families.

If you’d like to support families at Opening Hearts, consider donating to their Heart Totes. These are tote bags with gift cards and items valued at over $300 for families with children with special needs. The families who receive these are nominated through a form on the Opening Hearts website. Nominate a family or donate here: www.openinghearts.ca/hearttotes