Last week, we published Lily Kate’s story and beautiful photos. This personal portrait was both powerful and moving. Yet, we at Bittersweet want to be more than moved. We want to act, we want to care, we want to offer real and tangible support. But how do we do that? Not being unhelpful (forgive the double negative) can be just as important as being helpful. So should we do something or not? It seems that understanding is a journey. Thankfully, the lovely Theresa Comstock (Lily Kate’s mom) has graciously offered to share some of her own wisdom and insights to help us understand how we can best support families with special needs.
1. What do you wish people understood about raising a child with special needs?
The isolation. So many moms have the benefit of other moms who have walked in their shoes, experienced their same parenting challenges. But I don’t have those same relational resources. Lily Kate doesn’t develop at the same pace as other children, and as a parent, sometimes I feel alone. Abilities like learning to crawl, walk, manipulate objects, respond to questions, play independently, or interact comfortably with other children have not come as quickly or easily. She is a special and courageous child for the way she overcomes these challenges. Nonetheless, I still struggle with the loneliness of the road we are walking.
2. What do you want people to know about your child?
I want them to know her. I want them to understand the ways she is different, but also the ways she is the same. Isn’t this what every parent wants for their child? Ultimately, we all want our children to be loved and accepted for who they are. There is a lot of ignorance out there, so I wish that people would educate themselves. Get to know my child and understand her, learn about the particularities of neurological disorders, get into her world so you can understand the challenges that she faces every day, and even more than that, recognize the courage she shows with every milestone.
3. Let’s talk about the elephant in the room — What should people say?
Ask questions and give praise!
I appreciate it when people ask about our story. This may not be true for everyone, but for me, it helps to know that people want to understand. When people ask questions that express interest in our journey, that can break down barriers, foster greater empathy, and go a long way towards abating the isolation I so often feel. “Tell me about your child…”
And you can never go wrong with offering praise — every child and every parent benefits from a compliment or kind word.
I know this is a tricky issue. As with anything — grief, loss, or hurt even — it can feel like you are walking in a minefield, trying not to say the wrong thing. And truth be told, there is no single right thing to say. There are times that I encounter other children or families with special needs and don’t know exactly what to say myself, but what I can do is reach out in love and acceptance. A conversation motivated by a desire to understand and guided by sensitivity is a place to start.
4. What should they not say?
Avoid any comments that lead to comparison. That is one of my greatest struggles as a parent, and it is a constant process of surrendering, wanting her to be typical, but accepting her as she is, with all her challenges and perfect imperfections.
5. How can people best support you? What can they do?
- Pursue relationship — be a caring, supportive friend
- Educate yourself about the child’s special needs
- Understand and empathize — realize the incredible demands, additional demands on parents
- Give your time — offer help, ask for ways to help
- Be accommodating – just showing general awareness and thoughtfulness about unique diets or physical challenges when planning group events shows you care
6. What are some practical ways that people can give their time and energy to support a family with special needs?
Respite is a great need. We can’t just call up a teenage girl to come over and babysit. Our child requires a loving, caring adult, who is willing to educate themselves about her particular needs and to learn what to watch for and how to care for her. But there are also smaller, very practical ways people can help — much the way they would with any other family. Something as simple as offering to care for a sibling during doctor’s appointments or even offering to come over and play can be a huge support. Offer to run errands or do a load of laundry. Come over and talk. Bring a meal. Really any form of kindness is welcome.