Parents of every background, religion, and nationality have one common wish for their children_ to remain healthy throughout their lives. Unfortunately, many parents are forced to face their worst fears when a child is diagnosed with a medical condition that requires ongoing treatment or specific care. This could include seizure disorders, diabetes, or life-threatening allergies. It could also include a developmental disability such as autism, in which case your child may not be able to communicate his pain or discomfort. Regardless of the condition, there are certain steps parents of children with specific medical needs should take to ensure proper care and immediate action.
Fill out school and activity medical forms in detail. You may think these forms get stored away, never to be referenced again. School nurses, educators, and instructors will read these forms to make themselves aware of your child's specific conditions and learn about their responsibilities regarding your child's care. Ask to sit down with this person so you can go over the form together in case they have any questions beyond what is printed. These forms are also crucial for substitute nurses or teachers, in case your child requires care while under their supervision.
Provide your child with proper identification. Some conditions could render your child without the ability to communicate to emergency medical responders. Consider various types of identification, such as necklaces, bracelets, or shoe tags that list the condition, doctors' or parents' phone numbers, or medication. Consider which one best fits your child's needs. If your child will be spending a lot of time swimming at camp, the shoe tag may not be best as she won't have her shoes with her most of the time. Younger children may fare better with a bracelet over a necklace as the necklace may be uncomfortable. Ask your child's pediatrician about pertinent information to be printed on the identification tag.
Train everyone who works with your child. This means bus drivers, camp counselors, coaches, scout leaders, babysitters, and religious education teachers. Explain to your child that you are doing this in order to keep her safe, not to parade her special needs. Knowing that everyone is prepared to help her should make her feel safe but keep in mind it could make her feel like she is in an unwanted spotlight. Consider speaking with her close friends about her needs so they can be aware of warning signs she is in danger. Be sensitive to your child's feelings about her condition but assure her you are acting in her best interest. Have these conversations discreetly and remind caregivers of their commitment to confidentiality. Caregivers will have access to only the information that will keep your child safe.
Have a family emergency plan.Some children have medical conditions that require a call for emergency medical attention. Create a plan for this occurrence and practice with your family frequently. Make sure everyone has a job in case your child requires immediate medical attention. Jobs could include opening the front door for emergency responders, calling a neighbor or other adult family member, or gathering all the siblings in another room. Seeing a family member in need of emergency care can be frightening but having a plan will reduce everyone's anxiety.
Ask your child's pediatrician or specialist for important tips to share with those working with your child. He may have brochures to share or other printed materials to provide your child's caregivers and educators.
Communicate with your child about his condition but don't make it the only topic of conversation. It is important for your child to be educated about his needs but it should never define him. The most important thing for you to remember is he is a child first. Never address him as "diabetic" or "autistic." He is a child with diabetes or a child with autism. Addressing him this way is a sign of respect for him as an individual.
Having a child with ongoing medical needs can be frightening and stressful for a parent. Being prepared and informed will make you empowered and able to care for your child. Educating people who interact with your child will make you secure about her care in your absence and, for any parent, that feeling is priceless.
Jennifer Cerbasi teaches at a public school for children on the autism spectrum in New Jersey. As a coordinator of Applied Behavioral Analysis programs in the home, she works with parents to create and implement behavioral plans for their children in an environment that fosters both academic and social growth. In addition to her work both in the classroom and at home, she is also a member of the National Association of Special Education Teachers and the Association for Supervision and Curriculum Development.
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