We just endured a massive heatwave here in New York. It was tough on everyone. Local and national papers encouraged people to care for their pets, the elderly, and the unhoused.
They never mentioned special needs kids.
They should have.
The guidance parents and teachers receive about extreme weather and special needs kids is often inadequate. That can be dangerous in a heatwave. Having your non-verbal or very young child become listless or vomit is scary. Is it the potato salad that was sitting out on the deck? Are they reacting to an ingredient or not? What about their medications; should they get more or less if they aren’t eating and drinking like usual?
Every child with special needs is unique. The people that know them best are most likely to see a change in behavior that indicates that the heat is too much for them. This breaks down when they don’t have enough information or when they are distracted. Thinking clearly is somewhat impaired when anyone spends too much time in extreme weather. They researched this, folks. The combo of mild dehydration and fatigue alone will make it harder to think through a problem. Add alcohol and things get … messy.
Here is how clinicians assess the effects of extreme heat on special needs kids:
- What medications are they taking? Many medications can reduce the body’s ability to manage core temperature. A child in an integrated summer camp could be one of the only kids there that is taking a medication that reduces sweating or otherwise alters fluid balance. Counselors won’t know to ask about medication effects; they know to encourage hydration. They will not be told to monitor how much a child on medication IS drinking, or how often they use the bathroom.
- How well can this child sense and communicate how they feel, or what they need? Being verbal won’t be enough to ensure that a special needs kid will ask for water or to be taken into the shade/indoors. That takes both sensing internal state and knowing what would help them feel better. Most kids that are having fun will resist change. This is as true for the special needs child as any other child. But the neurotypical child who feels unwell will communicate this to a trusted adult. The special needs child may not be able to know they feel unwell until they cannot stand up or they vomit.
- How well have they been sleeping? Even with central A/C, the child that spent the previous day in the heat may not sleep well. Fatigue is always a risk for the special needs child. Balance, attention, frustration tolerance, sensory sensitivity; they all go somewhat south with fatigue. A child who is rubbing their eyes or nodding off at 10 am is probably showing us that they didn’t sleep well the night before. In response, we are more mindful of safety and behavior change.
- How are they moving? Many special needs kids are hypotonic. Low muscle tone means that fatigue will be more intense, come on more rapidly and often unexpectedly. Their degree of hypotonia doesn’t always match the level of fatigue. A child with mild low muscle tone can be more fatigued in less time if they are dehydrated or taking medications that affect hydration or blood flow. Children with spasticity have similar issues. Their sustained muscle contractions at rest and the additional energy expenditure the must use to move will create body heat that they can struggle to dissipate in extreme weather. Long periods of sitting in the heat can cause blood and fluid to pool in their legs and feet. When special needs kids stand up, they can wobble due to a decrease in the necessary blood volume that must be sent up to the brain. Other than vomiting or fainting, this is one of the scariest moments with a special needs child enduring extreme heat.
What do WE do to reduce risk?
We take heat seriously. Nothing is more important than safety; not fun, not participation, not anything.
- We learn all we can about a child’s abilities to communicate, drink and eat, and move. We check medication lists and look up side effects if we don’t already know them. If we can anticipate potential problems, we will be on the lookout for signs that things are going south.
- We try to prepare kids for the heat. Light colored loose clothing. Hats. Fans. Shade. Whatever we can use, wherever we are.
- We tell any caregivers what to be aware of. We explain how to change transfers to make them safer. We explain how to offer drinks in ways that make them more appealing, and to expect more bathroom trips or diaper changes. We tell them that not needing the bathroom or not wetting a diaper as frequently is a problem, not a win.
- We weave cooling periods into the day, not just going there in an emergency. And then we watch the effects of being cooler on our clients. If we see them perking up, making more eye contact, moving better, communicating more, we know that heat exposure had an effect on them. We try to share these observations with their parents and teachers. Anyone that cares for a special needs child benefits from this information.
Summer can be a blast. It can also be a challenge for kids with special needs. Their occupational therapists are always looking out for them!!
