Every day Jayne Dixon Weber, Director, Education and Support Services at the NFXF, responds to emails and phone calls from parents and caregivers from around the world who have questions about Fragile X.
Today we want to share her response to a family member who’s inviting a child with Fragile X syndrome over for dinner for the first time.
Jayne’s recommendations can be replicated for many family gatherings and social situations involving a child with Fragile X syndrome. With the holidays only weeks away, we thought this was good, timely advice to share with the community. Feel free to pass Jayne’s advice along to someone you know who might be in a similar situation this holiday season.
I am inviting new extended family members over for a holiday dinner party this weekend. Their children live with Fragile X. Do you have any tips on making the children feel comfortable? I heard it can be challenging for individuals with Fragile X to meet new people and be in new situations.
The following list of items is what I would recommend based on my own experience with my 26 year old son who has Fragile X syndrome (FXS). I don’t know the children’s ages and abilities can vary, but the following are general ideas to help make children with FXS feel more comfortable in new situations.
- Before the party, send photos of your house to the parents so they can share them with their children ahead of time. Include photos of the different rooms in your house the children will spend time in. Take the photos as if you are the children entering the house. For example: This is what your house looks like from the street, as you walk up the sidewalk, as you enter, as you look from left to right, the kitchen, the dining room, the family room, your back yard, etc.
- If possible, include photos of other people who will be attending the dinner party. The more photos you share with the children ahead of time, the more comfortable they will become with the new setting. The idea is to get the children used to the house and their new surroundings before they arrive.
- If appropriate, help the family develop a picture schedule of activities that might occur or the optional activities that will be available for the children to take part in during their stay at your house.
- This may sound terrible, but since I do not know these children, and the behaviors of children with FXS can vary so much—if you have something valuable that you do not want broken, put it away. Please don’t make a big deal about it—if someone asks, just say you decided to move it to a different place. It is possible for a child with FXS to accidentally knock something off a shelf or start playing rambunctiously. You’ll want to avoid potential accidents before they happen.
- Tell the parents to bring the children’s favorite toys, movies, stuffed animals—whatever is comforting.
- If appropriate, tell them to let the children choose their own clothes—when invited to a party, my son loves to wear a tie and he is always the most dressed up person in the room. If there’s cooking involved, he also sometimes chooses to wear a chef’s outfit because he likes to help out in the kitchen. Actually, I would encourage people to dress up – people act differently (in a good way) when they are dressed up, compared to when they wear sweat pants and jeans.
- If possible, have the family arrive early before anyone else gets to your house. Allow the children time to enter the house at their own pace. Not knowing the children, it could take up to 30 minutes before they come into the house. Then show them around the house. Make sure to show them where to find the bathroom. Show them where the other children will hang out and where the adults will be.
- Try to have a room where they can go if they need quiet time.
- Let the children know the order of what is going to happen when they arrive at your house. For example: First you can watch TV with the other children, second you’ll need to wash your hands and get ready to eat, then, once all the guests have arrived, we will sit down and eat.
- As people arrive, depending on the level of the children, they may or may not shake hands. Do not expect or ask for eye contact. A high-five is usually good. If you can find something out about the children ahead of time, that would be good too. Is there a sports team they like? Do they have a dog? Anything to make that connection.
- Children with Fragile X syndrome don’t like drama, loud or sudden noises, or strong smells. Many children with Fragile X syndrome do not like being touched. Also, they will not like it if others get upset—children with Fragile X syndrome mirror the emotions of those around them—both positive and negative.
- Are any of your other house guests loud talkers? Based on my personal experience, loud talking is really hard for children with Fragile X syndrome. I actually have a relative that I cannot invite to get-togethers because she talks so loud. My son cannot stand it.
- Do you have a dog? Check with the parents first to see how their children are around a dog or any other pet you may have in the house.
- Will you also be celebrating anyone’s birthday at the dinner party? Some children with Fragile X syndrome do not like the birthday song. It makes them fall apart. I can only say “Happy Birthday” in a regular voice and I do not light candles when my son is involved in the celebration.
- The new family may want to plan on leaving early. If one of the children gets upset, try to be as calm as you can. Clear everyone away from the area.
- If possible spend time outside—gross motor activities are always good. Can you take the children for a walk or run? Is there a park nearby? Think sensory diet and calming activities.
- When it comes to the meal, the children may want to eat in a quiet place. Talk to the parents ahead of time and ask if the children require any special arrangements—such as seating preferences and dietary restrictions.
I feel as though I have given you a list of all these things that you shouldn’t do with the children, but what I really want you to know is that children with Fragile X syndrome are very social. They like to joke and laugh, they like to please, and they like to be helpful. Children with Fragile X syndrome are very fun to be around and I hope you have a great time with them.
The best thing to do is try to get in touch with the parents ahead of time. When you talk with the parents, use the above list as a guide to ask questions. As I mentioned earlier, each child with Fragile X syndrome is different so what works for one may not work for the other. The list above is a great way to start the conversation. I am sure the parents will be very touched that you thought about their needs ahead of time.