Here is an article I wrote for the special needs blog in Sacramento4Kids. As the school year gets underway, it’s important for parents and caretakers to advocate for their special needs child or teen.
Did you see the film “The Walk” starring Joseph Gordon-Levitt as Philippe Petit, the high wire artist? His daring walk between the Twin Towers in 1974 was brought to the big screen. He made eight consecutive crosses at a quarter mile from Earth while holding a pole and avoiding police. It was a feat of epic proportions that required extreme skill and balance.
Advocating for your special needs child can make you feel like Petit as you measure each step, balance oppositional forces, skirt danger, assess risks, and keep your eye on the goal. It’s not a cakewalk. It may not come naturally. And preparation is necessary. You won’t need special shoes or a metal pole, but you will need tenacity and a semi thick skin to have an effect.
What does it take?
In order to advocate, you must speak, support, and assist in favor of (the person or the cause). It’s going to take more than you expect: inner strength, determination, time, patience, and money. Effective advocating can challenge parents, drain their energy, and steal time from other chores. However, in light of a diagnosis that becomes a one-way ticket to the special needs world, proper advocacy is vital. Hiring a professional advocate may have its time and place. Some educational advocates can make recommendations about services and programs; some may attend IEPs and negotiate on behalf of your child. If a parent is willing to pay the bill that goes along with this, great. But parents are truly in the best position to advocate for their special needs child. The depth of your knowledge, not to mention love, far surpasses that of a professional. And learning how to advocate really isn’t too difficult.
1. Becoming an expert on your child’s diagnosis
2. Creating long term goals
Take a practical approach and know that being an advocate is a long term commitment. A parent may slip in and out of the role like Petit pausing on a rooftop, but that advocacy high wire will call you back. A good advocate is going to need skills, and therefore doing homework (Sheesh! Will it never end?) is imperative. Think of learning to advocate as a short-term challenge with long-term rewards and benefits.
Know the law
After addressing points 1. and 2. (above) proceed by educating yourself on special education state laws. It’s crucial to know what’s within your rights and what’s reasonable to ask for in meetings. When a parent has even some knowledge of special ed law, it can boost confidence. A common mistake is to allow others to tell you what the laws are and what expectations to have; step up and take initiative to know the laws and set your own expectations.
Gather information and keep it organized to the best of your ability. Documents, emails, reports, articles, and records will accrue in no time flat, and a mountain of messy papers will not be fun to sort through. Old-fashioned organizing relied on file folders, 3-ring notebooks, and paper clips galore. SpecialVest is a new online tool that simplifies the entire organization process for parents/advocates/caretakers and makes document retrieval easy and smooth.
Just as any athlete abides by the rules of the game, so to must advocates. While parents are focused on THEIR CHILD and what they want for him/her, advocates who are fair must walk the line between demanding what’s right and good for their son/daughter and operating within regulatory parameters in place for all people with disabilities. One important lesson is about using the word “best.” While we understandably want what’s best for our child, when it comes to meeting with administrators, teachers, therapists, doctors, and others, referring to what’s “best” can make it seem as if you are demanding to call the shots rather than work collaboratively for the sake of the child. In his book Seven Habits of Highly Effective People, Stephen Covey directs advice about collaboration toward people willing to assume responsibility: “Collaboration is about leadership. As soon as you begin to collaborate, you have an opportunity to influence other people.” That’s the primary role of advocacy.
Areva Martin, ESQ, outlines seven principles to help advocates function (from The Everyday Advocate).
1. Take responsibility
3. Think critically
4. Speak with authority
She writes: “Your success as a parent advocate is not measured by the specific tasks you accomplish or the number of service hours you acquire. It is far more valuable to cultivate relationships that celebrate your child’s differences and show others around you how to do the same.”
It is TOUGH to put your expertise and goals into action while navigating the special needs road AND taking care of yourself. You might stumble on that tightrope but you won’t fall far. Keep the fire in your heart and go forward with a plan and willful determination. An advocate lies within each of us.
Individuals with Disabilities Education Act (IDEA)
The Americans with Disabilities Act (ADA)
Section 504 of the Rehabilitation Act of 1973
Good job Keri! As always using your gift from God to write as you do and educate people through your teaching and experience as a mother with a special needs child.
Such a great article with good sound advice for those we cherish, who can not speak for themselves. Yep, it’s hard but what are the alternatives for our beloved kids, etc.? Right/write on keri!
My clients, caregivers and others interacting in support of the developmentally challenged community need the opportunity to benefit from the work you’re doing. Your insight and expertise would be greatly appreciated by being a guest speaker at an event hosted by the State Council on Developmental Disabilities. I will reach out to one of my contacts there with your blog, encourage them to link to your site and consider giving you a platform at an upcoming event. Thank you Keri for being a voice for those in need.