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Siblings helping siblings thrive

Madelyn, Mackenzie and James Duane on a swing

A sibling is often called a built-in best friend. The hope for parents is that the bond will continue with your children through all phases of life. But a new addition to the family also means a new role for your oldest child. 

The oldest is there to show them ropes and the youngest is there to follow along and learn. However, in some families, that isn’t always the case. In Stacy Duane’s family, her first born child’s diagnosis of autism meant figuring out how a sibling dynamic would work in her home. 

After continued illnesses, delayed milestones, a 3-week hospital stay and concern from her parents and pediatrician, Stacy’s daughter Mackenzie was diagnosed with autism at age 3. With the support of Mackenzie’s medical team at Children’s Mercy, Stacy and her husband Jeremy felt they were ready to grow their family. We talked with Stacy about how she prepared Mackenzie for the arrival of her siblings, and how they in turn help her thrive. 

How can you prepare your special needs child for a new sibling? 

Twins Madelyn and James were born when Mackenzie was 4 years old. Throughout my pregnancy, we integrated the topic of siblings as much as possible into our everyday lives and conversations, so she had time to prepare. However, even with the introduction of a new brother and sister, not much changed in Mackenzie’s world. Remembering that she learns in her own time and own way was extremely helpful to me. Repetition and a schedule are key for the whole family. 

How can you help your child better understand their special needs sibling? 

Involving the siblings in Mackenzie’s care is an important part of learning and growing as a family. Mackenzie does most things a different way, from walking to talking to eating. Involving the twins in helping Mackenzie teaches them more about their sister and the way she lives. Modeling how to care for a special needs sibling can range from having the sibling assist with feeding, getting around and helping when they are anxious or over stimulated. Mackenzie started going up and down stairs on her own within the past few years thanks to help from her younger siblings. When it’s dinner time and the kids are playing together upstairs, Madelyn and James take the extra time to help Mackenzie down the stairs. Madelyn and James try their best to include their sister in their activities and modify things so she can participate. We go to the park often or play basketball with a Little Tikes hoop and the twins make sure to help Mackenzie shoot some baskets. Just because she doesn’t play the typical way, doesn’t mean she can’t play. 

How can you explain that every family is different? 

It starts with acknowledging there is no right or wrong way to do things, as every family has different needs and goals. We all have learned and adapted to the way Mackenzie lives her life and it has made the twins more compassionate. A diagnosis can feel scary at first, but I remind myself that she doesn’t need to be fixed, our family is unique just like every other family. Answer the curious questions your child may have about their special needs sibling and help them understand the diagnosis and the different way their sibling lives.  

What advice would you give to parents of a special needs child? 

Give yourself grace. It's going to be messy, nothing is going to happen as planned so be kind to yourself. Also, always have a second pair of hands for support during stressful events, if you think you need it or not. You aren’t alone in this, it takes a village to raise a child, but it takes a bigger village to raise a child with special needs.