“We used to do fun things as a family, before Ben.” Said by my teenage daughter with the patented teenage eye roll and tone for good measure.
The comment stung.
Mentally, I reeled. What business does my daughter have telling me how to run our family? Does she even understand the pressures of parenting her brothers with special needs and the effort it takes to balance everyone? Doesn’t she see how hard we’re trying? It is literally impossible to do the things we used to do when she was little. It was easier to take her as a five-year-old and her two-year-old brother on a two week camping vacation than it is to take our youngest at age 12 to run a few errands.
Even though she is compassionate and wise beyond her years, sometimes my daughter is just a teenager who cops an attitude because all of her friends do normal things with their families and we don’t. She is the only non-disabled child in our family. She has two younger siblings with Down syndrome, and the youngest has autism and multiple medical diagnoses.
I had to take a few deep breaths before I could calm my mind and trust my mouth to respond to her comment in a way that wouldn’t make matters worse. I let go of my knee jerk reaction of frustration, and realize that she probably knows that I can’t actually change our circumstances, but what I can do is make sure her feelings are heard and validated.
I looked her in the eye and said, “Yeah, I know, and it stinks, doesn’t it?”
Her attitude melted, and we had a vulnerable conversation about life as a sibling to a child with exceptional needs. It took a lot of mental and emotional energy on my part, energy that I don’t have to spare, but that she needs. Balancing that part of parenting doesn’t come easily.
Reflecting on the encounter, I realize that my daughter does not have a special needs support system around her. I spend time in Facebook groups for parents of children with special needs, and my local Down syndrome and autism groups. I have a circle of friends who “get it” in ways that even close family members struggle cannot when it comes to parenting children with special needs. My daughter has no such system. When she was little she went to Sibshops, but after she outgrew them we haven’t found a replacement. Her friends have various challenges in their lives, but a sibling with special needs isn’t something any of them have, and as such, they just don’t understand many aspects of her life.
My daughter needs to vent, and like any teenager, she lets her frustrations fly at mom. When I realized that her outburst was only natural, I was able to brainstorm ways to help. We got her into counseling and have been working on getting some family counseling as well. My husband and I “divide and conquer” taking turns doing things with our daughter and watching the children with special needs. Extended family steps in where they can too. I’m not sure we achieve balance, but we do what we can with the resources we have. Isn’t that what all parents do?
Alethea Mshar is a Special Needs Mom and Blogger.
Read her blog, Ben’s Writing, Running Mom
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