Headed to someone else’s home for the holidays? Share this with them before you go.
Holidays are a time for family and gratitude – and stress. This is especially true for families of kids who may have physical disabilities, cognitive disabilities, or sensory needs that make travel and change a challenge. It can be hard for family and friends we don’t see often to understand our children’s experiences and our unique experiences as parents of children with disabilities – and it can be easy for them to make judgments on us, our relationships with our children, and our parenting decisions. Here are some tips for family and friends hosting holiday gatherings 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. Traveling is exhausting for all families, and even more so for families with children who have a developmental disability. You can assume that physically getting ‘there’ has not been easy. Traveling by plane, car, 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 we have already done a lot of physical and emotional work before arriving at the door.
2. Don’t question our child’s diagnosis.
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 eventually 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. Sharing your perspective is helpful. Questioning our child’s diagnosis is not.
3. Ask before offering advice… yes, we’ve probably heard it before.
Once I had children, conversations started 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 it can feel like we’re being told that we aren’t doing enough or doing it right. And in this moment, maybe we just want to enjoy dinner with friends and family.
4. Remember there’s a lot going on behind the scenes.
Things that seem easy to some people are challenging for others. For children who are autistic or who have sensory sensitivities, sounds, new foods, a new environment, and a busy home or party 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 parent who carefully reads each ingredient listed on the packages is doing that because he knows what his child needs, not because he’s being controlling.
5. Know that we appreciate your offers of help or accommodations.
Families of kids with disabilities are used to scrambling to make things work for our children, and just asking how you can help feels helpful. And you might be surprised at how small efforts can make a big difference for our children. We might ask for fidget toys at the meal, or flexibility when a child wants to sit underneath the table (or even in another room), or a couple of volunteers to run around outside with our kids so we can sit and eat. Maybe we need you to identify a couple of people who can help us get our child’s wheelchair up and down your front steps, or to make a few dairy-free dishes our child will enjoy.
We may not need help at all, and our children may not need accommodations, but I can promise that when you ask the question, it feels like love.
6. Remember we are doing our best.
And then notice. Give us a hug, tell us that you appreciate the travel, or let us know you think we’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 and friends: “You’re doing a great job, thank you for being here.”