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!

Attention Teens: You Can Lead Your IEP Meeting

If you are a student with an Individualized Education Program (IEP), you are in charge—even if no one ever told you that!

This individualized program and all that paperwork are about you: your goals, skills, interests….  As members of your IEP team, the school and your parents are offering to help you be your most awesome self, but you are the expert about your own life. Leading your own IEP meeting might be a great way to start taking charge of your education and your future.

If you’re getting close to your 16th birthday, you’ll want to pay extra attention to this idea because a Transition Plan gets added to your IEP in the school year when you turn 16. You may have started planning when you were middle school, when a teacher or counselor probably started helping you work on a High School and Beyond Plan. This plan is required for all students to graduate in Washington State. Now is a good time to take another look and think a little more carefully about what you want to do in the future. Here are some starter questions:

  • Where will you work?
  • Do you see yourself in college or in a vocational program?
  • Are you going to drive or cook or take a bus to the grocery store?

Setting goals and making some preliminary plans now will help your school and family help you make sure you’ve got the right class credits, skills training and support to make that shift out of high school easier.

Being a leader at your IEP meeting is a great way to build skills for self-advocacy and self-determination. That means you can speak up for yourself and help others help you. At your IEP meeting, you can practice describing what helps you or what makes your life harder. You get to talk about what you do well and any projects or ideas that you get excited about. In short, you get to design your education so that it supports your plans to design your own adult life.

You can also invite other people to your IEP meetings. Maybe you have an aunt or a brother who knows you well and might have some great ideas? You can invite anyone to help you create a better IEP.  Remember the first letter in IEP stands for “Individual.” That’s you, so speak up!

Here are links to more ideas and tools to help you get involved in your own future planning:

The Center for Change in Transition Services has a toolkit just for you

Here are some other great Student Resources

Healthcare in Transition

There are many transitions in the life of a child impacted by disabilities.  One transition that is often set on the back burner is the medical transition from pediatric to adult care.  This transition can be significant for a young adult with developmental or intellectual disabilities because they then become the individual responsible for their own care and for communicating their needs to their new physician, who may or may not have worked with an individual with an intellectual disability before.

It is important for these families to check with their child’s pediatrician at or around age 15 to see if their practice has transition planning and a physician that they work with.  If there is not a system already in place at your doctor’s office, you’ll need to do the work yourself.  The key for any parent or guardian is to stay informed and to work with your teen on how to communicate with the medical staff at the clinic.  If you have a young adult that is non-verbal or has very little language mastery, you can make a huge difference in youth participation by using a them to say how they are feeling, what they need, and any questions they may have that can be worked out ahead of time.  A good tool to bring to each appointment is an information pager that says who they are, ID numbers, insurance numbers, what their medical conditions are, what their medications are, unique issues to watch out for, and the concerns and/or reasons for the visit is also a good tool to bring to each appointment. To help lessen anxiety and help with communication, talk with your youth ahead of time, practice what to talk about, what questions they might ask and what the appointment is going to look like.  There are tools online that help with communication and getting ready for a doctor’s visit.  One very good tool is at http://hctransitions.ichp.edu/gladd/  They suggest using an acronym “GLADD” to help individuals remember important ways of letting medical staff know what they need and what is important.

GLADD stands for:

G(ive) – Give information about how you are feeling and what you have done to stay healthy

L(isten) – Listen carefully to your health care providers and learn to

A(sk) – Ask your doctors the questions you have about your health

D(ecide) – Decide at every visit with the healthcare professional decisions need to be made about what to do next

D(o) – Do your part in following the plan.

This web site has a lot of interactive tools and videos that are great for modeling with youth and helping them hear from others in their situation.  Other such tools can be found at: http://healthytransitionsny.org   and at http://cshcn.org/teens/
If your teen or young adult feels the need for support while in the doctor’s office they will need to sign a release giving their guardian or caregiver permission to be a part of the office visits, allowing you to to receive information concerning any treatment plan.  From age 18 on, the young adult will be asked to sign off on any medical treatment or services they may require, including medication, surgeries and therapies. Because of this, it’s important to research adult providers, and even visit their offices, to see if they have worked with individuals with complex needs, have a good referral process, and understand the complexities of working with adults with developmental/intellectual disabilities.  Just as you were an advocate for your child in the school system, it’s just as important to stay connected in the medical system as well.