Use Facts to Advocate for Your Child
Learn how and why to record information about all aspects of your child’s development.
Learn how and why to record information about all aspects of your child’s development.
Whether you are meeting with a doctor, service provider, school evaluator or agency representative, the use of data, or information you collect about your child, goes a long way in communicating your concerns and your child’s strengths and needs. As a parent you will be asked many questions about your child, ranging from what he likes, to when he develops certain skills, to how he responds to different people and situations. If you just respond with vague bits and pieces of what you can remember, your child may not get the proper treatment or services he needs. But if you respond with hard facts that you have noted and recorded, your child is likely to be better served.
This article will share ways to collect and organize this data so you can relay this very important information to others who are just getting to know your child. When you are scheduling an appointment, evaluation or meeting, make sure to ask what information you should bring. Then, when you go, have all your data ready and organized.
One of the first and most common places you will be asked to provide information is during an appointment with a doctor, specialist, private therapy/home health, or ECI provider. Often you will be asked to complete a developmental questionnaire. These questionnaires vary greatly, but most have questions in the following areas:
● Developmental milestones: This information will help them determine your child’s strengths and needs. It is very important that you provide as much detail as possible, especially if your child has lost a skill. In these cases, for instance, providers will want to know when the skill was lost, and what the circumstances were at the time.
● Medication list: It is important for all those working with your child to know any medications he is taking, and the effects those medications have on your child. Medications can have side effects that influence how your child performs on evaluations. It’s important to make a list of any medications your child is on, including dosage, times of day it’s taken, and any side effects you’re aware of.
● Medical history: Your child’s medical history will need to be shared, including treatments, medications, surgeries, specialists or hospitalizations. You may be asked to provide copies of reports/results. Keep track of all conditions, symptoms and behaviors, such as ear infections, vision testing, drooling, broken bones, weight gain, joint pain, and reactions to medications. If you aren’t sure whether something is worth keeping track of, keep track of it anyway.
● Birth history: Be prepared to provide details about complications at birth or during the early months of development, such as birth weight, how many days you spent in the hospital and why, ventilator use, jaundice, tube feeding, breathing issues, need for oxygen, etc.
● Nutrition: This area will address if your child was breastfed or formula-fed and for how long. In addition, they’ll want to know if your child had any eating problems, such as choking or food allergies. It will also ask about any current concerns with feeding and weight gain.
● Family history: Questions may address the presence of specific diseases or disorders in other family members, as well as family dynamics, such as education, living arrangements, etc. This information is important to complete the profile of your child, since your family's health history can impact your child’s. If your child is adopted, bring any history of his birth family that you have.
The Center for Disease Control and Prevention (CDC) has developed free materials to help you understand and track your child's milstones. From birth to 5 years, your child should reach milestones in how he plays, learns, speaks, acts and moves. If you think there could be a problem with the way your child plays, learns, speaks, acts, and moves talk to your child’s doctor and share your concerns. Don’t wait. Acting early can make a real difference!
Use the Milestone Tracker app or fill out a milestone checklist to track your child’s development. Share the completed checklist or milestone summary with your child’s healthcare provider.
Read the tip sheet How to Get Help for Your Child for steps you can take to help you act on developmental concerns.
Another common place you will be asked to provide information is during a school-based evaluation. You may be given a questionnaire to complete prior to or during the evaluation. Typically, a school-based questionnaire will resemble the questionnaires from the medical centers. But it may also ask for information related to school behavior and performance.
Collecting and presenting data is an ongoing process and is a helpful habit to develop. As your child enters certain services and schools, you will hear everyone discussing their data. By coming to the table with your own data, it will help the team learn more about your child and assist them in creating a plan that is tailored to his individual strengths and needs. In addition, the review of data allows for everyone to track your child’s progress, determine what has helped and what hasn’t, and encourage open communication among all providers working with you and your child.