Caregivers and Helpers
There will be times when our children with dup15q syndrome have to be cared for by someone besides us. Most of us would get some comfort from knowing that someone else could step in and know all the important things about our child, making for a relatively smooth transition. Even if we are just leaving for a weekend, telling the caregiver “Susie doesn’t like spinach” on our way out the door won’t suffice for the complex care situation of a child with dup15q.
We all have many things filed away in our heads that are specific to our child. One of the most helpful things you can do for caregivers and other helpers in your child’s life is to write these things down so that they can be easily shared.
Duplication 15q Syndrome
Most caregivers will appreciate some information about duplication 15q syndrome. Make sure to provide specific information about the characteristics of the syndrome that particularly affect your child. Does hypotonia cause your child to tire easily? Does your child have seizures? Does your child have sensory issues such as sensitivity to loud noises? You can provide this website address to caregivers as a convenient source for more information if they would like to learn more.
It is important to write down all current medications, doses, and procedures for giving them (do we hide them in yogurt or applesauce, etc.). If your child is taking several medications, it is advisable to keep a written record of all the medicines that have ever been tried along with the length of the trial, results, allergies, etc. Our doctors may or may not have accurate records, but what if we have to change doctors or the doctor who knows our child best is unavailable when a crisis hits?
If your child has difficult behaviors, it is helpful educate caregivers that difficult behaviors are “messages” which can tell them important things about your child. Some examples of the kinds of messages a child might be conveying with his behavior are: “I’m lonely”; “I don’t feel safe”; “Something hurts”. Write down the kinds of behaviors your child frequently has, and the common reasons these behaviors occur. Being explicit will be most helpful to the caregiver, even if you have to describe behaviors which might be embarrassing. If you have strategies or an established behavior plan to address problem behaviors, make sure to include that information.
Caregivers need to know a child’s everyday routines to be able to provide good care. Be sure to note things that may seem inconsequential but are of major importance to your child’s functioning (such as a favorite toy or song or using a “counting down” strategy to prepare for transitions). What are your child’s favorite places to go shopping, restaurants, foods, activities? What will she refuse to eat? What upsets him? What form of discipline works best? What soothes your child? What time is your child accustomed to going to bed at night and awakening in the morning? What is the bedtime routine?
Creating the Document
How do we best pass this information along to someone? This may seem to be an overwhelming task, but find the method that works best for you and get started. Keep a journal or a notebook of all of your child’s information. Keep adding to it as you encounter things in your daily life that are unique to your child. Put your child’s picture on the cover both as a reminder to you of the importance of your task and to make it easier for someone to locate it in an emergency. Tell appropriate people where this document is stored and make sure it is easily accessible.
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