By Jayne Dixon Weber
Halloween is a day that many children look forward to all year long, but it can offer challenges for children with Fragile X syndrome. While it is typically all about the candy for many children, there are actually a variety of activities during this season that you can choose from, so it need not be all about one night. Here are activity ideas for you to consider, but the important point is to find what works for your family — maybe it will lead to a new tradition.
Some tips and advice to get through the holiday with the least amount of stress for everyone:
Going to the Pumpkin Patch
When choosing where to go, keep in mind the size and number of activities at the location. And as far as when, the pumpkin patch is probably the least busy when it first opens or early in the day. Decide ahead of time how many pumpkins and what size (and anything else) you will buy. You may decide to buy your pumpkin at the local grocery store — that’s OK too!
Before you go, you might consider making a visual story for your child. Find a pumpkin patch online and print out pictures to show your child where you will be going. Also, in case the weather changes, have a back-up plan, which might be bringing gear for any weather.
Once there, allow for time and move at your child’s pace.
Decorating Your House — Inside and Out
Let your child take the lead on the decorating. You can look online together for ideas on decorations you can make yourself.
For yourself, set expectations for how much you are willing and able to do. And allow plenty of time so you’re not rushed.
Choosing and Trying on Costumes
Decide ahead of time if you are going to make or buy the costume. Keep in mind that it might be cold or raining or snowing during the actual trick-or-treating. This means your child might have to wear a coat with the costume.
Once you’ve decided, think about where you’ll go shopping and how much you’ll spend.
Note that it’s not uncommon for a child to pick a costume that has a mask, but later not wear the mask when you go out trick-or-treating. Or, your child may change their mind at the last minute and wear an old or different costume.
Choosing Candy (or Other) to Give Out
Decide ahead of time how many bags of candy or other items you’ll hand out. And let each of your children pick out one bag of candy.
Carving the Pumpkin
Decide whether each child will have a pumpkin to carve, or if you’ll all work on a single pumpkin. If a single pumpkin, how will you decide on the carving? It could be a group vote, or you can make the decision beforehand.
Let your child pick the picture of what is to be carved. You could also look online for ideas. (Just make sure it’s doable!)
Does your child want to help clean the pumpkin out? Maybe use latex gloves.
Only you can decide if your child can be involved in any of the actual carvings, but maybe they can help poke pieces of the pumpkin out while you do the heavy carving. Before you carve, draw the design on a piece of paper first. If doing a face, include your child by asking: What should the eyes look like? The nose? The mouth?
Allow plenty of time for the whole process, including cleanup.
Going Trick-or-Treating
Plan which neighbors or area to visit, and create a visual book or story of the afternoon and evening to show your child.
Talk about and model what your child will when they go to the door. Knock on the door or ring the doorbell. Then practice what to say when they go to the door. Ask a couple of your neighbors if your child can practice going up to their house. If your child is non-verbal, consider handing out a card.
Later that same night …
Your child may want to go to all the people in the area you set out for, or they may want to quit after a few houses. Or they may want to dress up and hand out candy instead of going trick-or-treating. If so, you can model handing out one piece of candy to each child and then let your child do it. This is also an activity you can practice earlier in the day.
Your child may just decide to watch television instead. But, if you do go out:
- Set expectations about when your child will start and how late they can stay out.
- If your child won’t knock on the door, it’s OK if you do it for them and then step back. You can also model saying, “Trick or treat!” If someone asks your child what they are, give them a few seconds to respond and if they don’t, it’s OK for you to say for them, “I’m a ______.”
- You might ask a friendly neighbor child to go with your child. The friend can also model what to do and say.
The Candy!
Offer to trade all or some of the candy for a present (sometimes you can sell it to your dentist). And set expectations about how much your child can eat at one time or during the day.
Ideas Instead of Halloween
- Read Halloween books to your children. There are books for all ages.
- Watch movies, but be sure they are not too scary for your child.
- Make cookies or other spooky treats.
- You might opt to go to a community Halloween event. They’re usually during the day and a little lower in intensity.
From Parents Like You
We also asked parents to chime in on ideas for costumes and other Halloween fun. Here’s what they told us:
Our 5-year-old son won’t tolerate a costume so he wears his pajamas and goes as “a boy ready for bed.”
We always went with the soft easy in/easy out costumes.
Our sons hated masks, so they always went with minimal costumes like cowboy or detective clothes (a trench coat).
My son never liked costumes on himself or others. When he was young we made costumes out of boxes, a car, a robot. I think it made him feel more secure.
When our son was in pre-school, he was Tigger. He put on a costume in a store and would not take it off! I had to rip the ticket off of it and pay for it as he bounced out the door! That lasted a few years. [Editorial note: Tiggers are wonderful things!]
Our son loved Darth Vader. He would not wear the mask but LOVED the cape and lightsaber.
I get costumes without a lot of fanfare that doesn’t require masks or makeup or hats. One year he was Superman, one year a pirate, last year he was an army member and this year he will be Ironman, sans mask.
Our son has been a firefighter — just wearing a firefighter jacket — which has gone well as it just goes over his clothes like a jacket.
Superman worked well for us. No mask needed, and the cape is fun.
A costume that our son has tolerated was black sweat pants, black sweatshirt; I bought crinkled brown paper and glued it on the shirt. Then I used black makeup pencil for his nose and he was the cowardly lion in The Wizard of Oz.
Years ago our son’s favorite movie was The Mask. We went to a Goodwill and found an outrageous green and yellow jacket, tie, shirt, pants and the big rubber pull-on mask. He wore that all the time, not just for Halloween, for years until he couldn’t squeeze into the clothes anymore.
My son went as a baseball player: sweatpants, team jersey, cap, and he wore my daughter’s softball cleats.
My son wore a football uniform, and I thought he’d carry the helmet to put candy in, but he wore that tight helmet on his head for quite a while.
We do sensory-friendly costumes that are basically like normal clothes. We have done lumberjack (plaid overalls), a doctor (scrubs), train conductor (striped overalls), and this year he’ll be a gorilla (the costume is basically a black velour sweatsuit where the hoodie has a gorilla face on it). He goes trick-or-treating and loves it!
I always let each child pick out their costume; it seems to help with wearing them.
My son lays all his costumes out a couple of days before Halloween because that night he changes costumes a few times. He does not go trick-or-treating, but he wears his costumes around our front yard and helps pass out candy.
We have a movie night at home.
My kids love Halloween and all the stuff that goes with it — parades, parties, candies, dressing up, masks, etc. In fact, they love it so much it has caused sleep problems and behavioral issues, starting with when the calendar moves to October! All because they are so excited for it.
We go trick-or-treating with my son’s typical siblings and friends as models, although he was confused about it the first year.
Both of my boys love Halloween but do not like to wear masks or hats. They enjoy decorating, but they really enjoy kids coming to our house.
Our son is on a special diet, so can’t eat candy. Instead of eating it, he trades it in to us at the end of the night for a present!
Have fun with this. There is not a right or wrong way to do anything. Be creative!
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about
Jayne Dixon Weber
Jayne served as the NFXF director of community education (and other positions over the years) from 2007 to 2023. She has two adult children, a son with Fragile X syndrome and a daughter. Jayne is the author of Transitioning ‘Special’ Children into Elementary School, co-author of Fragile X Fred, and editor of Children with Fragile X Syndrome: A Parents’ Guide. Jayne likes to read, enjoys photography, and goes for a walk every day.