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How to Be an Advocate for Your Child

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Dear Elizabeth,
My friend's 2-year-old isnít speaking yet, but her pediatrician told her not to worry. What can she do since sheís still concerned about his development?
Vannia Evans
Elizabeth's Tips
Elizabeth Sanchez
Elizabeth Sanchez
Host
  • Work closely with circle of care
  • Ask lots of questions
  • Be persistent
  • Find out about regulations & services
Expert Advice
Rani Elwy, Ph.D.
Rani Elwy, Ph.D.
Psychologist
Your health care provider only sees your child for a short amount time, and only occasionally. You, the parent, knows your child best. If you continue to have concerns, donít give up. Start documenting what you observe. Keep a journal of anything that bothers you. Document all the words your child says, and state which ones can be understood by someone other than you. If you have access to a video camera, take a video of your child playing with others, so that whatever concerns you have about your child can be seen by your health care provider in a more natural setting, and can be compared to the behavior of other children. This can be particularly effective, and has worked in my own sonís case.

Then make another appointment with your doctor and bring your evidence. When making the appointment, explain to the receptionist that you have some serious developmental concerns that you need to talk to your childís health care provider about, and ask if more time can be allocated for your childís appointment. This way, your doctor will have more time to spend with you. If your childís physician still seems to be dismissive of your concerns, take a deep breath and explain to him or her that you are really worried, and that you would really appreciate having this conversation, because you want to do all you can for your child. If you STILL arenít successful, it is time to change health care providers!

What is an Advocate?
To me, an advocate is both an activist and an educator. By activist, I mean that you are searching out information and empowering yourself with as much knowledge as you can get about your childís condition and the services available to help your child and your family. By educator, I mean that you are both learning about how to help your child live with this condition, but you are also teaching others about it tooóproviders, family members, peers, school staff.

Educate Yourself
Once a delay or disability has been recognized, parents should educate themselves about the regulations and services which may apply to their child, such as:

  • Title V of the Social Security Act: to provide and to promote family-centered, community-based, coordinated care (including care coordination services) for children with special health care needs and to facilitate the development of community-based systems of services for such children and their families; this funds parent education and information sites in each state.
  • Individual with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.
  • American Academy of Pediatrics, Parent Pages of the AAPís Policy Reports and Clinical Practice Guidelines These Parent Pages will help you understand current guidelines and practice for particular conditions and diseases. Please share these with your pediatrician as well.
  • Exceptional Parent magazine whose goal is to provide practical advice and emotional support to families of children and adults with disabilities and special health care needs, as well as the physicians, allied health care and educational professionals who are involved in their care and development.
  • Family Voices, a national grassroots network of families and friends, advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs; promotes the inclusion of all families as decision makers at all levels of health care; and supports essential partnerships between families and professionals. You can subscribe to their Bright Futures, Family Matters newsletter and there is a Family Voices office in each state.
Ask Questions
If a parent is able to ask a lot of questions and get meaningful answers to these questions, then it is likely that the parent and the provider will be ďon the same pageĒ in terms of what the childís health problems are, and what needs to be done about them. Some providers are better than others at asking parents if they have any questions. If your childís provider does not ask you about your thoughts, then please make sure that you bring them up right away.

Work Closely with Your Child Care Provider
Many times a child will have a health problem that will last for several years if not for the childís entire lifetime. Your childís providers will become an integral part of your childís life, and yours. I have called my sonís providers our extended family, and, in fact, wrote an article entitled ďExtended FamilyĒ in The Journal of the American Medical Association (June 2007). By working closely with your childís providers, you will develop mutual trust and respect. You will both see how each party is working hard for the child, and that each party has the childís best interests at heart. You will also develop a shared understanding of what is important to your child, at a particular point in time.

Donít Forget to Help Yourself
Many, but not all, parents of children with special health care needs will experience emotional distress during the course of their childís life. It is absolutely essential that parents of children with special health care needs carve out time to themselves, if only for small amounts of time. You will be a better parent and an advocate if you also take care of yourself. I think it is also imperative that you join a support group for parents with special health care needs. Even though each childís needs are different, the experiences are almost always similar. I have learned more from parents than I have from any other source of information. Once you learn from other parents, you can then turn around and support parents of children newly diagnosed with the information you have already learned. It is a wonderful, supportive, advocacy cycle.
Child Care Provider Comments
Jennifer Hawk Powell
Jennifer Hawk Powell
Mother of one son
My son, Spencer, was born with a rare genetic disorder called T.A.R Syndrome. T.A.R Syndrome is characterized by the absence of the radius bone in the forearm and a dramatically reduced platelet count. His legs donít straighten out all the way. Itís very hard for him to walk. We found out his condition in delivery. It took the doctors 10 hours to diagnose him after delivery. I knew right away that I would have to be an advocate my son.

It has been really hard to find information on T.A.R Syndrome because it is such a rare syndrome. My saving grace has been the internet and a support group that I found on yahoo groups.

Iíve learned to ask a lot of questions. If it doesnít feel right then you should get another opinion. When you have a child with a rare syndrome you become an expert. You take it on. You have to understand and recognize that the doctors are there to help but that they donít have all the answers.
Devon Rios
Devon Rios
Mother of two
When my son was about 15-18 months old, I began my quest for services for him. It didnít seem like he understood things, he had a speech delay and he wasnít making eye contact with us. My biggest issue was that people kept telling me to wait until he got older. My gut feeling was that I needed to get help. His pediatrician said he would grow out of it. We thought that he just needed to hit his developmental milestones. I just felt like things were getting worse.

We started the process by getting his hearing tested. When he was 2 yrs old, we went to the regional center. Then he started preschool and he had a very hard time communicating. My son is very social so he was very frustrated because he couldnít communicate well. He was having issues with comprehension and he couldnít follow directions. It started to affect everything he was doing. So we decided to get his hearing tested again.

We got him private help over the summer. He began working with a private speech therapist and he also spent time with a resource specialist who helped him with his reading and comprehension. Once we had all of these services in place, we began to see vast improvements in his development. The district only offered the minimum. It took us 2 yrs to get him in the right services.

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Topic: Special Needs
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