Our two girls, Lily (age 8) and Elise (age 6), were both diagnosed with SYNGAP1 syndrome last year. At the time there were only 250 known cases of SYNGAP1 in the world. Yes, that means our girls are 2 out of 250. It is extremely rare, and even more rare to have two children with a de novo (spontaneous) genetic condition in the same family. It also means that people are curious about our girls and often have questions when they encounter us at the playground or grocery store. Our search for a diagnosis took six and a half years and we were fortunate to be in the capable hands of our team in the Department of Neurology at Boston Children’s Hospital.
Sidebar SYNGAP1 is a rare neurological disorder. Children with this condition may have delays in speech and motor skills, such as sitting, standing, and walking. Most children with SYNGAP1 have seizures and about half have autism spectrum disorder. Some children may also have weak muscle tone (hypotonia) and hyperactivity.
I truly understand that sometimes people aren’t sure what to say, and I get it. I can be awkward, too, when it comes to responding to something I don’t understand. I know that most people mean well and want to say that right thing. That’s why I want to start a conversation about other ways to engage parents of kids with special needs.
Tips for parents of special needs children
Here are some tips I’ve learned about how to handle awkward moments if you’re the parent of a special needs child.
Try to be open and honest. We understand why people want to know about our girls. They want to know why Lily isn’t talking to their child or why she just pulled the hat off their toddler (yes, it has happened, multiple times). They are curious why Elise is drooling at age 7. We do our best to be open and honest about the girls and are willing to answer anyone’s questions. But it’s not always easy.
You don’t need to apologize. There’s no need to apologize for your child. Instead, explain their condition and let other parents know they are perfect to you just the way they are. We have learned so much from Lily and Elise and I truly believe we are better parents and people because of them.
Have a ready response. Over the years, I’ve learned better how to cope when strangers’ questions seem rude or catch me off guard. One grandmother approached Lily and me at the playground and asked, “What does she have?” I was so shocked that I simply said, “she has nothing” and walked away. But since then I’ve come up with a new answer: “Lily has a smile that brightens the room. She has spirit that can lift me on the lowest of low days. Lily has more perseverance and strength than anyone I have ever met. She has bruised legs from playing like a kid. She has a love for Disney princesses and Toy Story. Lily has a passion for books. She has all this and more.”
Tips for curious parents
Here are some ideas about what to do or say if you’re curious about another parent’s child:
Keep your reaction in check. When talking about another parent’s child, remember that they live with their child and the condition every day. This is their normal life. One parent, after hearing a bit about my girls and their diagnosis, gasped loudly and said, “Oh, no. I am so sorry.” That made me feel really terrible, as if I had just told her my children had three heads and seven feet. I think the loud gasp was what really threw me. Instead, it would have been more helpful for her to say something with a more positive spin, like, “It sounds like they are really strong girls,” or “I bet they work hard in school,” or “What can I do to help?”
Start a conversation. Most parents love to talk about their children. Parents of children with special needs are no exception. The next time you see a child or children that you are curious about, start with asking about the child instead of their differences. Always keep your comments or questions positive. Here are some ideas to get the conversation going:
- What does your child like to do for fun?
- They use an iPad to talk? That’s cool, tell me more about it!
- Do you have a picture?
- How old are they?
- Do they like school?
- Ask for more details about their medical condition if you are curious. For example, “What kind of seizures do they have?” (This may not be the case with all parents, but I am an open book.)
We have come a long way as a society, but we have further to go. We need to work on becoming more accepting and understanding of neurodiversity. Parents of children who have invisible or visible disabilities have a significant amount on their plate, from making sure their children are receiving a proper education to dealing with numerous visits and calls with doctors, specialists, and the pharmacy. A friendly comment or question goes a long way!
Learn more about the Department of Neurology.
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