For parents, their child’s diagnosis of autism often comes with feelings of uncertainty, loss of control and even a sense of isolation. It’s not easy to know who to turn to and typical parenting support doesn’t always meet the need. But there is help and Jamie McGillivary, who is a Board Certified Behavior Analyst and the President and Founder of Healing Haven in Madison Heights, encourages families to seek out that support, especially from other families who have been there.
As pandemic conditions ease, we all have a wonderful opportunity to reconnect.
“We have all become so disconnected because of COVID. Everything seemed to go on hold, but I don’t want people to forget the power of connecting. Now that we are re-emerging, the question is, how do we connect?” McGillivary asks. Building relationships with people who have walked in your shoes is even more important for parents whose child was diagnosed within the past two years — in the thick of the pandemic.
Here, we share McGillivary’s wisdom for recognizing the value of a support system and tips for building community around shared autism experiences.
Start now to reconnect and gain support
Before the pandemic, Healing Haven hosted family dances and parent planned community events designed to provide a social outlet for families affected by autism to meet and build supportive friendships. Even Healing Haven’s parent waiting rooms were designed to be a safe space for parents to connect, share experiences and support each other. During the pandemic, the company found ways to connect remotely, including virtual coffee time and parent support sessions focused on stress management. While these were helpful, the impact was not nearly as great as opportunities to connect in person. As COVID restrictions lessen, Healing Haven is looking forward to providing more of these opportunities.
If you can’t find it, make it
If families find themselves lacking social support, they should not be afraid to be proactive, McGillivary says.
“Make friends with other parents in your kids’ schools. Speak up and put yourself in the right place to tell your story. Some parents may not want to do that, but there is healing in being able to share with other people who understand what you are going through,” she adds.
When you begin to recognize how much you gain from connecting with people who are experiencing similar — if not identical — issues and challenges, you know the effort is worthwhile. And, as you share challenges, you’ll likely share joys, too.
“Sometimes parents put off developing social interactions because it never feels like there is enough time, but to really invest in support is an investment in your child,” McGillivary says. “Why do you take care of yourself? So you can take care of your child. If you are held up by your community and supported, that makes it all the easier to bear the struggles of the day-to-day.”
As the weather warms and provides an environment where we can gather safely outdoors, plan a picnic at the park and invite like-minded people to join you. “Pick up your head and notice who is next to you when you are out and about,” McGillivary says. “They could be a person who can change your life — or you could change theirs. Connect with people. It’s as simple as that.”
Spark a conversation with parents in the waiting room at your ABA therapy clinic or encourage your child’s providers to explore options for including social support.
While in-person support groups are not nearly as prominent as they have been in the past, online networks and organizations such as Facebook, or Autism Alliance of Michigan may provide a starting point to finding your people.
Learning to extend grace
While most parents have family and friends who provided love and support before their child was diagnosed with autism, they may gain a deeper level of compassion from people who can empathize with their experiences. But what about situations where family members simply don’t acknowledge your child’s autism or its effects on your daily life? McGillivary encourages you to respond with kindness.
“Give people grace and know that they can’t truly understand something unless they’ve been in that position,” she says. “Arm people with as much knowledge as possible. The more they know, the more likely they are to come around. But again, to spend time with people and not have to explain yourself or your situation is freeing.”
By finding and creating your own support system you may find that your stress levels decrease, your social circle widens and your understanding of available resources grows. You may also simply find lifelong friendship, which is the best gift of all.
Learn more about Healing Haven’s unique services for kids and teens at thehealinghaven.net.