Stay Cool when Summer Heats Up

Summertime brings special challenges for families whose children have special needs. Some medical conditions and medications make individuals particularly susceptible to the heat. Be sure to check with your doctor about which medications might increase heat sensitivity.

Keep in mind that extreme heat combined with humidity can make a person even more vulnerable. It’s harder for the body to sweat and cool itself off when the humidity rises, making it even harder to maintain a healthy body temperature.

The US Department of Homeland Security manages a website, Ready.gov, to help people prepare for and mitigate emergencies, including a variety of natural and man-made disasters. The website offers articles translated into a variety of languages. The campaign provides these bits of advice related to the risks of extremely hot weather:

  • Extreme heat can occur quickly and without warning.
  • Older adults, children, and sick or overweight individuals are at greater risk from extreme heat.
  • Humidity increases the feeling of heat as measured by a heat index.

Here are a few ideas for your family when the heat is on:

  • Stay indoors and in an air-conditioned environment as much as possible unless you know your body has a high tolerance for heat.
  • Drink plenty of fluids but avoid beverages that contain alcohol, caffeine or a lot of sugar.
  • Eat more frequently, but make sure meals are balanced and light.
  • Never leave any person or pet in a parked vehicle.
  • Avoid dressing babies in heavy clothing or wrapping them in warm blankets.
  • Check frequently on people who are elderly, ill or may need help. If you might need help, arrange to have family, friends or neighbors check in with you at least twice a day throughout warm weather periods.
  • Make sure pets have plenty of water.
  • Salt tablets should only be taken if specified by your doctor. If you are on a salt-restrictive diet, check with a doctor before increasing salt intake.
  • If you take prescription diuretics, antihistamines, mood-altering or antispasmodic drugs, check with a doctor about the effects of sun and heat exposure.
  • Cover windows that receive morning or afternoon sun. Awnings and window coverings can reduce the heat entering a house by as much as 80 percent.

If you go outside:

  • Plan strenuous outdoor activities for early or late in the day, when temperatures are cooler.
  • Take frequent breaks when working outdoors.
  • Wear a wide-brimmed hat, sun block and light-colored, loose-fitting clothes when outdoors.
  • At first signs of heat illness (dizziness, nausea, headaches, muscle cramps), move to a cooler location, rest for a few minutes and slowly drink a cool beverage. Seek medical attention immediately if you do not feel better.
  • Avoid sunburn, which slows the skin’s ability to cool itself. Use a sunscreen lotion with a high SPF (sun protection factor) rating.
  • Avoid extreme temperature changes. A cool shower immediately after coming in from hot temperatures can result in hypothermia, particularly for elderly or very young people.

If the power goes out or air conditioning is not available

  • If air conditioning is not available, stay on the lowest floor out of the sunshine.
  • Ask your doctor about any prescription medicine you keep refrigerated. (If the power goes out, most medicine will be fine to leave in a closed refrigerator for at least 3 hours.)
  • Keep a few bottles of water in your freezer; if the power goes out, move them to your refrigerator and keep the doors shut.

The Washington State Department of Health lists additional ideas through its website. Some Extreme Heat Cooling Centers in Washington State are listed through the state’s 211 Information Network.

Get Ready for Summer with Camp Planning

Planning summer camp for children with special needs requires a bit of extra thinking and planning. Your initial questions might feel fear-based:

  • Will the camp be accessible enough?
  • Will she be safe?
  • Will they care for him? 
  • Will the kids be nice?
  • Is she ready? Am I ready? 

Getting organized can alleviate your fears and help set your child up for a safe and fun summer experience. These broad-based questions can help narrow your search:  

  • Would your family prefer a day or an overnight camp?
  • Given your child’s unique circumstances, would it make sense to arrange special supports in a camp designed for all children?
  • Would an inclusive camp with a caregiver be the best fit? 

A guide to help you seek answers to these and other questions is The Center for Children with Special Needs Summer Camp Directory, which lists camps designed to meet unique medical, social and emotional needs. This directory lists overnight camps and week-long adaptive day camps.   

Here are some additional tips for getting ready:

Talk About Camp Early and Often

Make this a family project. Discuss the possible activities with your child, look at pictures and call the people at places that sounded interesting. Focus on what sounds fun and what it might mean to make new friends and share adventures. Invite your child to talk about what might feel scary—and that feeling jittery or homesick is a normal part of going to camp for all children who are new to the experience.

Practice makes perfect

Many camps have open houses or visiting times so a child can look around and begin to get comfortable with the environment. Have staff show you around and talk about the schedule so your child can feel prepared and know what to expect.

Safety First

Help your child talk about self-care routines. Your child can practice asking for something he or she might need, and you can talk about who the helpers will be. This is great practice in the life skills of self-determination and self-advocacy! Your child can also help you write down special instructions for the camp staff. Talk openly to the camp director, and document allergies and things to avoid. Ask whether a specific staff person can be assigned to your child so that person can receive training directly from you. Make sure to include specifics about your child’s unique needs (e.g.: He tends to have a tantrum if you ask him to rush; she walks in her sleep; or he needs a calming spot, a hideaway or a swing.) Help the staff feel prepared to help your child succeed, relax and have fun!

Make sure to talk with your child about privacy, safe touch, and respecting one’s body. Ask the camp what they have in place to ensure safety.

Check in With Your Child’s Doctor

You can schedule a medical appointment to talk about do’s and don’ts at camp. For example, DO go swimming and have a great time, but DON’T jump from high places into the water if a medical condition like brittle bones makes this dangerous. At the appointment, you can request additional dosages or back-up medications as needed. If your child has serious health concerns, a camp with nurses or doctors trained in your child’s specific condition may be necessary. You or a paid caregiver also might be able to visit during lunch or another time of day to provide needed medical supports, and this can be discussed with your provider during this pre-camp medical check-up. Be sure that everyone involved knows what is expected and who is responsible for which aspects of your child’s care.  

Don’t forget to include sunscreen, lots of water, and a hat for summertime heat. Take note if your child is taking a medication that might increase heat sensitivity.

Make a List and Check it THRICE!

Many camps provide detailed packing lists, but your family’s list will include specific items for your child’s individual comfort or unique circumstances. Medications, emergency changes of clothes, pads, or other medical supplies need to be written down to make sure they make it to camp!

Zip-closure baggies labeled with a Sharpie pen might help you get organized. You can write instructions on index cards inside the baggies. A Care Planner can help, with a medical release, copies of medical cards and instructions about where to take your child in an emergency.  Here are some resources to help you create a Care Planner:

Organize Your Child’s Medical and School Documents with a Care Notebook
Familyvoices.org
Seattle Children’s Hospital Center for Children with Special Needs
National Center for Medical Home Implementation

Enjoy Your Me Time

Wish your child an excellent adventure, and don’t forget to treat yourself to some self-care time while your super special child is away at camp!

Preventing the Tidal Waves of Challenging Behavior at Home this Summer

By Kelcey Schmitz, MSEd
Center for Strong Schools
University of Washington Tacoma

The Whole Child Initiative (WCI)

The Whole Child Initiative (WCI) at the University of Washington Tacoma’s Center for Strong Schools helps schools, families, neighborhoods and community programs to create sustainable nurturing environments that support the academic, behavioral, social and emotional development of children. One essential element of the “whole child” approach is Positive Behavior Interventions and Supports or PBIS.

Imagine living in a world where 80-90% of problem behaviors were prevented through teaching and reinforcing social norms. Positive Behavior Interventions and Support (PBIS) is a term used to describe an approach that is different from more traditional behavior management practices of harsh punishment, humiliation and pain to change what someone is doing.

PBIS offers a framework that allows for a graduated continuum of proactive support. As the intensity of the behavior increases, so do the levels of interventions. Much like how public health prevention is structured, PBIS uses a three-tiered method to organize and deliver strategies to prevent, reduce and reverse challenging behavior.

Researchers have found that frequent harsh punishment is unlikely to effectively change behavior. While there may be short-term benefits, if the child doesn’t learn a more socially appropriate behavior to do instead, the problem behavior is likely to continue.  The parent-child relationship is strengthened by loving and positive interactions and can be negatively impacted by overly harsh punishment.

Tier 1 support, sometimes referred to as universal prevention, involves defining, teaching and reinforcing expected behaviors or pillars. Much like we are all taught about the importance of hand washing to prevent illness and are frequently reminded in public restrooms, we teach and model what we want to see (i.e., respectful, responsible, and safe behaviors) and reinforce when we see those things.

Some children will need additional support that is more technical in one or more of the expected behaviors. Advanced tiers of prevention and intervention (Tier 2 and Tier 3) require a more comprehensive approach. However, when added to an existing layer of prevention, they are more likely to be successful.

Summer evokes a range of emotions for parents. We look forward to all that summer has to offer, a break from hectic schedules, beautiful weather, heading to the beach, trails, or the ballpark and much more. On the other hand, we know that most of our kids thrive in more structured and engaging environments – given all the demands in the family home, this can be a challenge.

Support positive behavior at home by trying the following strategies.  Get a start on them now and ride the waves smoothly through the summer!

Define, teach and routinely acknowledge family pillars or expectations.

Discuss how you want to live as a family and identify some words (pillars or expectations) that represent what you value. Then define and teach what those things look and sound like in every day routines. Some common pillars include respectful, responsible, and safe. Stick with 3-5 positively stated expectations – it’s easier to remember a shorter list.

If you expect it, you must reach it. Identify a couple of “hot spots” to begin. Problem behaviors occur within routines.  Perhaps, it’s the morning routine or mealtime you anticipate being especially difficult. After discussing 1-2 ways to be respectful, responsible and safe in the morning, teach what each looks like. Have fun with it! Set up “expectation stations” and assign each family member one pillar to teach to the rest.

Behaviors that get attention – get repeated. Initially, recognize each time you observe your child doing the right thing. In fact, create opportunities for our child to experience success! Make sure you are specific, “Son, I noticed you stopped to pick up your shoes in the hallway. Thanks for putting them away and keeping the walkway safe for others.” The easiest way to change a behavior is to point out what a person does right.

Remember this catchy phrase, “5:1 gets it done” to ensure you are having five positive interactions for each negative interaction. As the behavior begins to occur frequently, reinforcement can be faded.

Create engaging and predictable routines

Children crave structure and routine. Even though we, as adults, look forward to a relaxing evening or weekend, our kids need regular activity and engagement. Consider the following – we can either keep them busy or they will keep us busy!

Use visuals to create predictability. Put together a visual schedule that represents the major routines of the day. You can cut out pictures, draw them, use a dry erase board or use actual pictures of your kids participating in each daily routine. Create the schedule together!  Ask your child to check the schedule – especially when moving from a preferred to non-preferred activity. It’s hard to argue with a picture!

Set the stage for positive behavior

Teach, pre-teach and re-teach. Just like we teach our children their colors and shapes, we also must take the same instructional approach and apply it to behavior. When your child is first learning the skill or for more difficult routines when you anticipate a problem, pre-teach. Give a quick reminder ahead of time – “when we get in the car, sit up, buckle up, and smile!”

Give transition warnings or cues to signal the end of one activity and the beginning of the next to allow time for your child to move from one thing to the other. This is especially helpful when you ask your child to stop doing something they enjoy and move to a less preferred activity. “In five minutes it will be bath time.”

The first/then strategy can be used to let children know there will be a preferred activity after doing something they don’t like. “First take your bath, then we can play with your dolls.”

Give more start than stop messages. “No”, “don’t”, and “stop” are phrases children hear so frequently that they sometimes tune them out and only hear the verb. Tell your child exactly what you want them to do, “take your plate and put it in the sink.” Do your best to reserve the stop messages for dangerous situations to get your child’s attention quickly.

Giving choices helps to support your child’s development and eliminates the need for a power struggle. “Would you rather play for 5 more minutes or get in the bath now?”  “Feel free to choose the pink pajamas or green ones.”

While these strategies may not completely eliminate problem behaviors you may find that it creates consistency, predictability and a more positive atmosphere for your family. When challenging behaviors persist, a solid foundation of expectations will allow you to quickly build another layer of support for your child.

See the following for additional information, parent support and resources:

Books:

Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior 

Websites:

The Association for Positive Behavior Support

Getting Behavior in Shape at Home

Family Resources for Challenging Behavior

 

Summer and Dads of Children with Special Needs

For more info go to www.dadsmove.org

Summertime Ideas for Dads

Summer time can be a particularly stressful time of year for us dads that are raising special needs children. One of the ways our family and many that we have served go through this time is by networking with other parents to do activities jointly with our kids.

Here are just a few ideas of what you can also take advantage of:

Many local parks have free and reduced priced local camps and many will work with our kids

The Boys and Girls club offers many programs and they do sliding scale

If you are in the Central Puget Sound there is a wonderful program called Sea Scouts.

DadsMOVE will be posting activities throughout the summer so keep looking for things to do at our website.

Attend local support groups to meet other parents like you

Special Families of Puget Sound host and posts many events and activities.

And don’t forget to give you and your significant other time for your own self care