BRANCHING OUT: The Szymanek family vists the Tree of Life at Disney's Animal Kingdom; "The care that children with disabilities receive can be complex and difficult to manage with one child. That difficulty increases when you're parenting multiple children in need of specialized care."
Medical case management can be a helpful tool for families providing care for multiple children with disabilities. Where possible, consider selecting providers at a single hospital system. This allows for simpler coordination of care and less overall paperwork for the caregiver to manage between offices. Medical Case management can be a much-needed resource for details surrounding what is covered by their insurance plan, as well as, helping to arrange for things like a personal care attendant. Utilizing Medical Case Management can also streamline assistance with appeals and coordinating complex care.
The care that children with disabilities receive can be complex and difficult to manage with one child. That difficulty increases when you're parenting multiple children in need of specialized care. Talk to your children about the medical professionals that support each child, the medications they take and why. Read social stories or better yet, create your own. Narrate and use checklists that explain what you are doing,
as you complete various tasks to schedule appointments. Watch videos of people scheduling, planning, and attending medical appointments. This will support their experience and help them learn the skills they need to complete more complex planning and execution. For resources to help with these skills, check the National Center for Pyramid Model Innovations.
Parenting multiple children with disabilities is universally hard. Having support systems like family and friends to help can really make a positive difference. What happens if they have no experience with disabled children? Perhaps, they would love to have a connection with your child, but have no idea how to relate to them. If they want to learn, teach them. When you explain your child's disability, also include ways to connect and things to avoid.
"How can I learn to build a connection with my grandchildren so we can have a close relationship?" - Sandra Klinkhammer
It's entirely possible that you may have family or friends who would love to help you and build a relationship with your children, but they are unsure how to start. Teaching your child the language to explain their likes and dislikes can also help them explain their needs and connect with others on their own.
In addition, first responders can be overlooked when you're educating your child's community. It's important to consider whether they too might benefit from understanding how best to interact with your children in case of an emergency. Many counties and states have programs that keep registries of those with disabilities or special health care needs, as well as, how best to interact with them, in case of emergency. As this service is run slightly differently in each area, check with your local police and fire department for more information.
For families with more than one child with a disability, there are more factors that contribute to stress than for the average