Holidays are a time for family and gratitude. For family members who we see only a few times a year, it can be hard for them to understand the daily obstacles we face as parents who have children with disabilities – and it can be easy for them to make judgment on us, our relationships with our children, and our parenting decisions. Here are some tips for family members to encourage more empathy, less stress, and more togetherness.
1. Assume I look tired because I am tired.
I know that already. There’s no need to point it out. Whether your extended family is traveling with a child with a diagnosed developmental disability, or a young child with a suspected developmental disability, you can assume that physically getting ‘there’ has not been easy. Traveling by car, plane or bus brings on new challenges for children who may like their routine, who may feel anxious about new things, or who may feel the stress of a parent trying to pack, prepare and rally the troops to get to a family function. Assume that your family members have already done a lot of physical and emotional work before arriving at the door.
2. Assume the diagnosis is real.
Going through the diagnosis process with a child, whether we have accepted the diagnosis or not, is a complex journey that demands respect and space. Just because your child was late to talk but caught up doesn’t mean the same thing will happen for mine. Yes, children do develop differently and at varying paces, and yes, my child probably does things similar to your child. But that doesn’t make them the same and that doesn’t mean their challenges will play out the same way.
3. Assume we’ve heard your suggested solution before.
Once I had children, conversations starting involving questions about sleep, school or social activities. This is normal! Be mindful that these questions can be hard for parents of children with a developmental disability. Although you may have an idea about a treatment you’ve just read about, a success story that you’ve watched, or a neighbor who had similar behaviors, wait and bring this up at a different time in a different place. As parents of kids with a disability, we’ve likely had these conversations before, and although almost always well-meaning, at times they can feel like you’re being told that you aren’t doing enough or doing it right.
4. Assume there’s a lot going on behind the scenes.
Things that seem easy to some people are challenging for others. For children with sensory sensitivities, sounds may be overwhelming. For anxious children, the anticipation of the day may require some extra cuddles or support. Don’t judge a parent for giving her son a screen to look at alone; she might be helping him to regulate his body to avoid a meltdown. The mother who carefully reads each ingredient listed on the packages is doing that because she knows what her child needs, not because she’s being controlling.
5. Assume we are doing our best.
And then notice. Give a hug, tell your family member that you appreciate the travel, or let them know you think they’re doing a good job. Sometimes we think those things are implied, but they’re not always. Sometimes we just need to hear it from family: “You’re doing a great job, thank you for being here.”