The Lightners enjoy life as homebodies within their tight-knit family. How close? Lisa says, “My only brother married my husband’s only sister.” Let that sink in for a minute. These sibling-in-laws band together through good times and bad.
It’s the kind of support the Lightners need. Lisa and Dan have two sons, Brian, age 4, and Kevin, age 6. Kevin has a rare disorder called Chromosome 15q Duplication Syndrome (Dup15q). While he is physically healthy, Kevin is nonverbal and has severe autism, as well as being intellectually disabled, and will require a lifetime of care.
The brothers have their share of ups and downs. Brian went through a period where he would say that Kevin was not his brother, but Lisa and Dan have worked hard to give him attention, activities and time away from his brother. It seems to have worked. “Lately I have seen an increase in the amount of time that they interact, which is quite a relief,” Lisa says. “I want him to grow up loving his brother just like brothers do, and not resenting him for the extra time and attention that Kevin takes sometimes. I think we’re on the right path.”
Lisa knows first hand that there is currently not enough support available for people who are disabled, thanks to her work as a special education advocate. Kevin is fortunate to have a great deal of community support and services. For example, little brother Brian will be attending his first workshop for children with siblings who have special needs offered by Kevin’s school.
While Brian is still too young to discuss his brother’s future, he realizes that many families have a “Kevin” of their own who needs extra help. Lisa doesn’t like to use the word “expect” to discuss future sibling care, but it is her wish that Brian, and his cousin Emma, help out as he grows up. Lisa likes an idea she saw on a show about a family with a sibling with Down Syndrome who lived in an in-law suite. “I would love for my boys to have that situation, and hopefully we will be in a financial position to help out with this if they want that.”
The Lightners have increased their life insurance, and they do have a solid retirement plan in place. Should anything happen to them, they have verbally agreed to give custody of the children to her brother and her sister-in-law, who has experience running group homes that allows her to understand Kevin’s needs in depth. However, they have not yet done formal future planning, such as setting up a special needs trust or formalizing Brian’s living arrangements.
Lisa spreads awareness of these unique needs of children with disabilities through her blog, A Day in Our Shoes. “These families need more community support and services. It doesn’t mean Kevin doesn’t have anything to offer just because he needs assistance.”
Lisa and her family share special challenges in raising Kevin and Brian, but their concerns for their children are universal. Planning the future for a child with special needs and a typically developing sibling can seem overwhelming, but your family can find information and help from Massachusetts Mutual Life Insurance Company’s SpecialCareSM Program, which provides access to information and products and services that can help improve the quality of life for people with disabilities and special needs.
This is one of two posts sponsored by Massachusetts Mutual Life Insurance Company (MassMutual), for which I received compensation. SpecialCare is an exclusive MassMutual program that provides access to information, specialists and financial products and services.
Photo courtesy Lisa Lightner.
Carrie says
What a wonderfully supportive family! Thanks for sharing!
Gina B says
You’re welcome!