I vividly remember how badly I wanted to burn every pregnancy and parenting book I came across when my son was born nearly 10 years ago. None of them prepared me for the shock of finding out my newborn had Down syndrome. None of them offered any comfort for the pain and confusion I was enduring. My child was days old and we were on a different track then everyone one I knew. If I wanted pointers for our parenting experience, I had to search blogs and special publishing companies. There are thousands of books at Barnes and Noble, yet I had to search online to learn about parenting a child with a disability.

The frustration continued into the toddler years. Fellow parents would swear by this blog or that book. It stung. I felt excluded. My parenting experience was too complicated for mainstream methods. I relied on early interventionists and my gut to show me the way.

A decade into parenting a child with a disability and the suggestion that a parenting book has all the answers still frustrates me to no end. Not just because there is no easy way to manage my son’s behaviors, but because his two younger “typically” developing siblings are more complicated than the techniques that 1, 2, 3 Magic offers. (Though counting to 3 had a magical effect on my daughter for about a month.)

Parenting is the hardest job we’ll ever have. So when friend suggested taking a group parenting class that teaches how to connect with children without threats and bribes – I signed up. The instructor practiced Non-Violent Communication or NVC. An alternative, and perhaps more fitting name is Compassionate Communication. The instructor had learned about it nearly 15 years ago and has been teaching it for 12.

Over 6 weeks, the course zoned in on how we use our words.

The focus of the class is making your needs and wants clear. Recognize your judgements and put them aside when you communicate. Make a request rather than a demand so the person you are speaking with knows they can say no.

The biggest takeaway: always practice empathy. Most of us rarely feel truly heard. Try to listen to the feelings and needs behind someone’s words.

Take for example when a child says, “We never do what I want.” As a parent you might hear an ungrateful child who doesn’t appreciate all the things you have done for him or her. As a parent, you need to pause. Take a deep breath. Don’t focus on the words or you’ll miss the point. Consider what is behind the words. Perhaps the child is frustrated and wanted more say in the decision-making process. Children have very little control over their lives. Even if they did a dozen things they wanted to in a day, you are still dictating meals, bedtimes, hygiene, screen time, etc.

We worked on reframing what we say so we express our wants and needs rather than making someone feel blamed or guilty for their actions. Instead of saying I’m disappointed because you don’t clean your room; try, when you don’t clean up your room, I feel disappointed because I need order.

The takeaway – empathy is critical. Our children deserve to be treated with the same level of respect as adults.

Did it work? Meh.

If there were one magical answer to effective, calm, perfectly imperfect parenting, whoever invented it would be a gazillionaire.

The techniques require wordiness. One thing I know about children, and especially children with Down syndrome, is that you need communicate in as few words as possible. Be concise. For my son with Down syndrome, I use fewer words because his brain processes language differently. But I notice that with everyone in my family, even my husband – less is more. The more words I take to express my needs, the sooner they check out. When I expressed this challenge to the instructor, she didn’t seem to grasp this challenge. She said I can either do as she says or just keep doing what I’m doing. There were no modifications for children who didn’t fit into her mold.

While I appreciate empathy and use it all the time, I have also spoken with developmental specialists who stress that children, by nature, are irrational, emotional beings. They often defy reason. Our brains do not fully mature until we are well into our 20s. Expressing my wants and needs, and asking my children to practice empathy is not only impractical but physiologically impossible. Sometimes I just need them to listen because I’m their mom.

Bottom line – do whatever works for you and your child(ren). There is no cookie cutter approach to parenting. You can use a little bit of everything. Or better yet, stop listening to what everyone else is telling you and trust your instincts.

Want to talk to someone about parenting a child with a disability? We have staff and volunteers who are in the thick of it right along with you who will get back to you within 48 hours. Reach us on our helpline.

Phone: (877) 567-1122

Email: cfihelpline@vcu.edu

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