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Trick or Treating with Down Syndrome

Lila went trick or treating last night, a little early due to bad weather expected on Halloween. We know she has communication delays and sensory processing issues, so we did our best to follow a few tips. Unfortunately she only made it a few houses before we had to go home. She enjoyed the rest of the night passing out candy to trick-or-treaters. That was where she’d rather be.

Every individual is different, and a combination of factors can contribute to how he or she experiences Halloween. Some people with Down syndrome may have absolutely zero barriers when it comes to Halloween. On the other hand, speech delays can contribute to a frustrating Halloween experience, and sensory issues can make Halloween downright intolerable for some people with Down syndrome.

The idea of sensory processing disorder might be new to you. I didn’t understand it at first either. As parents of a small child with Down syndrome, we try to treat Lila similarly to other children, and we have expectations that she will obey and follow directions. We at first thought Lila was just misbehaving, but we came to realize that her responses to overwhelming sensory stimulants are not a choice for her. It’s like she goes into protection mode.

Some of you readers are not familiar with people who have Down syndrome. If you’re handing out candy, and a child doesn’t speak or acts in a way you don’t expect, please don’t assume they’re rude. Many children have a diagnosis or sensory issues unknown to you, and they may react in different ways as they try to process new sights, sounds, and smells. They may struggle to communicate what they feel. Lila tries to go in everyone’s houses, and she can only say byeeeee!

Flashing lights, fog machines, crowds, booming noises, scary costumes, fast movements - all of these can become overwhelming to some people.

Sometimes we have a hard time distinguishing what Lila’s barriers are; we can’t tell if she’s experiencing a negative sensory response, communication barrier issues, or an issue understanding - or all of the above. Either way, we just have to do our best to know her and what she needs, so that she can enjoy Halloween like all of her friends.

Here are some tips for how a person who has a diagnosis, communication issues, or sensory processing issues can enjoy Halloween:

*Note: Although we may say ”your child” a lot, this can apply to your child, friend, or any loved one who has a developmental diagnosis.

1. Choose a costume that is not only safe but sensory friendly. It’s hard because our kids want to wear costumes and masks like other kids, but some costumes can lead to a sensory agitation.

  • Make sure the costume is comfortable and nothing about the texture bothers your child.

  • Let your child feel the costume in the store before you buy it. Make sure you can send it back if you order it online.

  • Ask your child how he or she feels about the costume. Does it make him happy or sad or scared?

  • Try a practice round wearing it at home before you go out into the new lights, sounds, and smells on Halloween night.

2. Explain in advance or even in the moment what will happen when you go to that event or out trick or treating. Lila doesn’t quite cognitively understand our explanations at this point, but our voices are soothing to her. Ask your child questions to encourage their communication with you as you go house to house.

3. If your child is showing signs of becoming overwhelmed, be prepared to step away to a quiet place to remove whatever sight or smell is causing the issue. Take a moment to talk with them. Lila usually looks to be having fun: excitedly flapping and exclaiming yaaaay! But this continues into a stuggle of wrangling her and gets more intense and even desperate. This escalation can happen very quickly until she appears more angry than excited.

Sometimes she needs to step away and talk. She‘s receptive to what I’m saying, although she can’t verbalize what she wants to say very well. I still ask her questions about how she’s feeling and assure her everything is ok.

4. As hard as it may be, limit your child’s sugar intake. Lila gets even more overwhelmed when she‘s crashing on sugar. It just seems to heighten her sensory issues.

5. Every child is different. Be flexible, and try not to feel guilty as you do your best to understand your child’s needs. It will take some time to learn what your child needs, and your child’s needs will likely change over time.

If you’re unsure about whether your child or loved one has sensory or communication issues, contact your doctor and ask about a specialist. Lila’s speech therapist has taught us different techniques that help her communicate through pictures instead of words, and Lila’s using a device now to help her tell us what she needs. Also, Lila’s Occupational Therapist sent home a comprehensive questionnaire that helped us to determine which sensory issues she has. Knowing this has helped us to be more patient with her.

We take steps to help Lila navigate unexpected situations, to patiently help her communicate her needs. Now that we know and go by these tips, we see less “behavioral issues” and a much happier Lila.

Last tip: if at first you don’t succeed, try again. We’ll be trick or treating with Lila again today.

Happy Halloween! 🎃

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