The journey through autism and disabilities is certainly complex – filled with excitement and achievements, as well as challenges and uncertainty. Some challenges may relate directly to the disabilities themselves, such as navigating insurance denials for essential therapies or medications, advocating for the appropriate school and individualized education program (IEP) goals, or managing our loved ones’ high-risk behaviors.
Other challenges can be even more daunting – relocating to a new school or state, family struggles such as divorce or custody battles, the death of a parent or grandparent, natural disasters like flooding or hurricanes, or a global pandemic. These situations can be traumatic and overwhelming for someone who is neurotypical, and even more so for individuals with autism, intellectual and developmental disabilities, or other neurodiverse conditions.
When the unavoidable occurs, it is important to have a plan in place to provide stability for your child or adult with special needs. The following tips can help families stay the course:
- Maintain composure: As a caregiver, it is critical to remain as calm and reassuring as possible. Children and adults with disabilities are often highly attuned to our mood and energy and can easily sense panic or anxiety. If you feel overwhelmed, do your best to keep your composure. Practice breathing exercises like box breathing: breathe in four counts, hold four and breathe out four. You also can teach this technique to your child or adult to help them relax.
- Create a new routine: Our loved ones with disabilities often crave predictability and structure. So, when life throws us a curveball, try to stay as close to your existing routines as possible. And if this is not possible, create new routines that fit the current situation and explain the changes using developmentally appropriate language.
- Use comforting tools: You may have go-to solutions to help soothe your child or adult when they feel anxious or upset – whether it is playing a special song or giving them their favorite stuffed animal. Consider using timers and a visual schedule to enhance predictability, and incorporate sensory items (e.g., weighted blankets or vests, slippers, noise-canceling headphones, playdough or putty, a homemade rice bin for calming play) that may naturally provide comfort.
- Have a safety plan: A critical – but often overlooked – family practice is developing a safety plan in case of an emergency (e.g., fire, flood) that requires you to evacuate your home. Work with your family members to create a plan that includes more than one possible escape route and a designated meeting point outside the home where everyone should reconnect. If your loved one with special needs cannot understand or follow the plan, be sure to include a buddy system with clear details about who will help that child or adult safely exit the home and stay with them.
- Limit media exposure: I vividly remember when 9/11 occurred. At that time, two of my three children were just 1 and 2 years old. While they may not have understood what was happening on TV, the horrific images and details became overwhelming, and even though they did not understand what was happening, they could sense something was wrong in our home. Realizing it was too much, we changed the channel to the Food Network – it offered a sense of calm during a very uncertain time. To this day, we still enjoy the Food Network, and we have even learned how to cook from watching various shows! In today’s world, many of our children and adults have their own phones, tablets and computers. If possible, consider limiting access to certain sites or channels to help reduce exposure to distressing content, or set shorter screen time limits.
While we may not be able to predict or prevent challenging situations, we can be better prepared when they happen. It’s all about taking time to think creatively and calmly and develop “what if” scenarios and safety plans to help guide your response when the unexpected happens.
Amy Kelly, MBA, MNM – Devereux’s national director of family engagement – is the mother to Danny, Annie and Ryan. Annie is diagnosed with moderate to severe autism, verbal apraxia, intellectual and developmental disabilities, and general anxiety disorder. Amy serves as a family representative on several special needs boards in the community, locally and nationally. In addition, she participates with other patients and families in efforts supported by the Autism Care Network and serves on an executive committee for the American Academy of Pediatrics to assist children and adolescents with special needs and the importance of quality care.
