When Your Baby or Child is in the Hospital
By Miriam Edelson, author of Battle Cries: Justice for Kids with Special Needs
How to get the support and information you need when your baby or child is in the hospital.
If your baby or child is hospitalized, get out that notebook. Take it when you meet the various doctors, therapist and social works. Use the same procedures: list your questions in advance and record the answers. Make sure to get clarification of anything you don't fully understand.
You may have to be persistent with your questions. It is very likely that the people working in hospital are busy, even overloaded. Don't let that deter you from asking questions and getting answers - speaking with you is part of their job.
Ask the hospital staff if they have anything you can read on the subject of your child's condition or a medical procedure that is recommended. If the information you receive is too technical, our family doctor or the nurse practitioner at your clinic may be able to help you understand it. Do not hesitate to ask!
You are entitled to know exactly what treatment plan your child's medical team intends to follow. Be assertive. Don't take "no" for an answer.
Many hospitals have a patient advocate or ombudsperson. If you run into any brick walls in looking for information or answers to your questions, ask how to contact the patient advocate or ombudsperson. This does not make you troublemaker - it makes you an informed consumer. Find that person and get the help you need.
When you don't feel strong enough, pushing for information may just seem too hard. Get someone to help you: a friend, a member of your family, your kid's teacher. Often we are totally focused on our child and thankful when she/he gets medical attention. But you will still want to understand what is going on. When my son was an infant, for example, a girlfriend joined me at a key meeting with one of the specialists. She asked a lot of questions I had not thought of and helped me to make sense of the answers later.
Don't be too hard on yourself. Few of us are trained to deal with stressful situations of this kind. If your sister or friend were in the same boat, wouldn't you gladly offer them help?
When it is your child it is natural to feel like a bundle of emotions. There is nothing wrong with your reactions or emotions. There are times we all need extra support to handle a challenging situation.
Your family doctor or someone in your faith community may know of someone you can talk to about how you are feelings. Remember that you need to keep yourself well so that you can help your child over the long run.
Copyright Miriam Edelson. Excerpted from her book Battle Cries: Justice for Kids with Special Needs
Miriam Edelson is the author of Battle Cries: Justice for Kids with Special Needs, an amazing book on raising and advocating for children with special needs. She is also the author of My Journal with Jake: A Memoir of Parenting and Disability.
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