A sibling with a purpose: what it means for your child who has special needs and what that means for their siblings.
Having a child is quite the phase change. You go from a single adult, or two adults to three. Then, if you decide to grow your family, you add to the equation an things become exponentially more difficult. Have kids they said… it will be fun they said…
The point of this post is not to minimize the challenge that parenting is, or that each child brings to a family. There is a unique phenomenon that happens when a family welcomes a child with special needs, and subsequent (or previous) children who are typically developing.
Previous blog posts have focused on what to do with your child with behavioral issues, or with special needs. Admittedly, there has been a gap in support for their siblings. Research has shown that siblings of children with special needs have particular challenges and particular psychological needs. Some of the best behavioral therapists and behavior analysts that I have worked with entered this field because they had a sibling with autism or special needs. That is pretty telling. Siblings are powerful. Siblings are resourceful. Siblings are essential.
This doesn’t mean that siblings are resilient. Growing up is hard, growing up with a sibling with special needs is harder. Children need love, attention and guidance. Children with special needs need so much more. In our house we joke that our son takes up a lot of air. He is in therapy 40 hours per week, which means there is an ABA therapist in his face, and in our home, 7 days a week. There is no question that his older sister, who is 4 ½, going on 16 knows that he is something special. We don’t hide anything, she knows that the people who come in our home are therapists, and that our son is in therapy.
When beginning this journey with our son, the welfare of our daughter became a variable that we did not take lightly. I have been in this field for 12 years and I have seen the sibling dynamic firsthand. Things were about to get complicated. What do we tell our child, when people come into our home every day, including weekends to “work” with her brother? How do we explain that the people who come are to play with him, but not with her? How do we account for the fact that she is in school every day with children his age who speak, and listen, and are typically developing, but her brother is none of those things? We were blessed with a very intelligent, very insightful little girl, so we needed to be prepared with answers.
Our approach has been honesty, and has been met with pushback, as was expected. Why does he get away with this and I don’t? Why is it ok that he hits mommy? Why does he get friends to come play with him on Saturday and nobody comes to play with me? We answer all of her questions as honestly as possible, and plan for the inevitable resentment that is to come.
Child number 1: a very intelligent, very verbal little girl who isn’t afraid to voice her opinions is now engaged in swim lessons, ballet, tap, and baseball. Why? Because she has to be. Individual time with siblings of children with developmental disabilities is key. Our daughter is in Pre-K full time so Monday- Friday is covered, she has her own experiences, her own school, her own friends. On the weekends, we have made a concerted effort to not only fill her time, but to make sure that she has one-on-one time with her parents. She goes to ballet and tap class with mommy, goes to baseball practice and games with daddy (holy moly T-Ball is adorable), and whenever possible participates in therapy with her brother. As important as individual time is, it is also equally important that she interact with her brother and be an active part of his therapy, just like his parents are. In therapy sessions she is working on sharing, turn-taking, and patience, just like her brother is, and it’s a thing of beauty to see them work together to play with play-dough or complete a puzzle. My heart soars when I see my daughter prompt my son to sign “more” if she is sharing a snack with him and I can’t help but envision her taking over her mommy’s practice as the best Behavior Analyst in Santa Barbara, but in the meantime I will settle for a happy, well-adjusted sibling who is here for her brother, and is invested in his progress just as much as we are, but knows that Mommy and Daddy are here for her, and love her, and support her, just as much as her brother.
Siblings of kids with special needs have a super power when it comes to the development of their siblings but they have needs that historically can be pushed aside when meeting the needs of their sibling. Keeping this in the forefront of your mind when looking at the overall needs of your family can help to maintain homeostasis and nurture that super power into the best behavior analyst the world has ever seen. Holy moly we need them. Send them to me for training.