True happiness… is not attained through self-gratification, but through fidelity to a worthy purpose. Helen Keller
When Adriana was receiving Early Intervention services, there was a time where services were not going to be offered because the county refused to release the funds to pay for them arguing that my kid was going to receive “deluxe” services, not just what she needed. My husband was deployed and I had no idea what I had to do and that is how my adventures in advocacy started.
I received a call from the organization that was in charge of providing the therapies and they said, the only thing I could do was to go to court. So I went to Family Court and argued that the services my girl was going to receive were not “deluxe” services but services prescribed by her pediatrician. This was 27 years ago, now parents have it a little easier, however, we as parents still need to know how to advocate for our kids.
Now you might think that you don’t know anything about being an advocate, but have you ever asked a doctor or a teacher about an issue regarding you child? Or spoken up about something that really matters to you? Then you have advocated for your child and that issue.
Here are some of the steps that have helped me in becoming a better advocate for my kids:
Knowing what your kid’s disability is, and how it affects them is important. We want to make sure we know how their disability affects them in school and in the “real world”. Likewise, we want to know their strengths and their needs since these will become important when we are working with teachers and job coaches.
There are laws at the federal,state and local level that are designed to protect the rights of individuals with disabilities. Here are some of the Federal laws that apply in all 50 states:
And there are others you can explore as you need them
Knowing where your papers are, medical diagnosis, medical evaluations, and how to contact and connect with those doctors and therapists will help you when putting together the information you need to share with other doctors or the school. Keep records of any email or phone conversation you might have. If you are as busy as I am, it will help you remember when someone is going to send you a form to sign, or when you have to send something to someone.
I call this knowing the alphabet soup. Like any other profession, Special Education has a vocabulary all of its own. IFSP, IEP, OT, PT, etc. are all acronyms or terms used in Special education. The same goes for medical terminology if your child has medical issues.
If there is anything I have learned while advocating is that you get more flies with honey than vinagre. I can be very “spirited” and emotional according to my husband however, I have developed a knack for keeping my cool and speaking in an even tone and ensuring that I am being collaborative and a team player. After all, I am part of the medical team since I follow the protocol they design for my kid, and I’m also part of the school team, since I am the one that ensures that my kids do their homework, projects and get to school. When communicating with the team we want to make sure we focus on the needs of our child and find ways to solve problems and find solutions together, as a team.
Before the internet most parents received information from support groups, books, and the library. Now we can look for information regarding any disability or medical condition in the privacy of our home. It presents a wonderful opportunity to become well versed and informed on any topic and from a variety of places. If I can share anything is that no one person or organization has all the answers and you are the one that can assess what works best for your family and your situation.
When looking into obtaining anything you need to know who you need to contact. If you are at a store and find out that something is wrong you call the manager. Likewise you need to know who is the director or the decision maker at the school, center or hospital.
The same goes for looking into the parent groups like the PTA or any other groups in the school. Many times these groups share the same goals as we have for our children. And if you are new to the school or the area they might even be able to share with you different skills or ways of doing things that will yield the desired outcome for all the children.
I hope this small list has given you some ideas on how to become an advocate or improve your advocacy skills. The most important thing to remember is that your child chose you to be their advocate and you can make a difference in their life and perhaps on more than one child.
Let us know if you have any questions or suggestions.