When you have a child with special needs being a parent is not your only role. You also have to become your child’s advocate.
Some parents wonder why on top of all their other responsibilities, they also need to act as their child’s advocate. The answer is simple – you know your child the best! You have a unique insight into your child that no one else has.
Getting the educational and medical supports your child needs is often a battle. Schools have limited budgets and resources. The medical supports your child needs may be expensive. You may have a struggle to get your insurance company to pay for them, assuming they even cover the type of treatment your child needs. Good advocacy skills will help you negotiate these battles. You may not always win, but at least you will be satisfied that you did your best.
The role of an advocate is not easy and it does require some homework. This article describes three steps to help you become an effective advocate for your child.
Educate yourself about your child’s needs
You can’t be an advocate for your child unless you know what your child needs. You already know some of your child’s needs, but you can gather valuable information from others.
Talk with your child’s medical providers about the types of assistance and accommodations they recommend for your child. Occupational therapists (OTs), in particular, have a lot of information on exercises, adaptive equipment and toys that help children with special needs. The American Occupational Therapy Association has a brochure that outlines the work occupational therapists do within the school environment. If your child has an OT make sure you talk to her about her recommendations.
If your child is in school, teachers and other staff are another good source of information. Teachers spend a lot of time with children including your child. Your child's teachers have a unique insight into the types of things that will help your child in the classroom environment.
Find out what your child is entitled to
Your child’s rights and entitlements will vary depending on your child's diagnosis and needs. There are lots of resources on the internet that will give you information out about your child's rights and entitlements. Most organizations for families of children with special needs include a section on rights and entitlements on their websites. Children and Adults with Attention-Deficit/Hyperactivity Disorder and the Autism Society are two examples. Some of the topics you may want information on are:
- An individualized education plan or IEP
- A 504 plan
- Accommodations during testing
- Modifications to homework
- Access to special classes
- Extra help in school
- Assistive technology
- Personal assistance in school
Another great and often underutilized resource is other parents. Network with other parents who have children with special needs. They can share their experiences with you and offer practical advice.
Learn how to be a good advocate
The Merriam Webster dictionary defines an advocate as a person who “supports or promotes the interests of another.” As a parent, you are already advocating for your child. Now, it is time to fine-tune your advocacy skills.
As your child’s advocate, you need to persuade a variety of people to take actions that benefit your child. It is extremely important to maintain good working relationships with your child’s teachers, medical providers and other professionals, even if you disagree with them. You never know when you may need their help.
Your goal as an advocate is to be assertive, not argumentative. Make your points and stand up for your child, but do it in a professional way.
I have listed some free advocacy resources below. These resources provide information on advocacy skills and tips on how to become an effective advocate.