The Nail That Sticks Out is Hammered Down

As a special needs parent, advocacy is my top priority.

By definition, advocacy means interceding on behalf of another. When we advocate, we often find ourselves at odds with “the system”. And when we take on the system for the benefit of our child, we stand among the minority.

The nail that sticks out is hammered down”. This Japanese proverb warns that standing out will bring the wrath of a system that wants to hammer us down, making us vanish like a nail driven deep into wood.

Unfortunately, challenging the system is sometimes the only way to obtain the best for our child. You might ask, why is this necessary?

I’ve come to the conclusion that advocacy is necessary because of the design of the system. While our society’s social systems profess to consider the needs of the individual, by necessity they are designed to serve the masses. They seek a common denominator from which they deliver standardized services. Our problem is that our children don’t fit this profile … thus our need to fight.

The challenge of advocating for a special needs child never ends. My wife and I have spent two decades enduring this fight—and we see no end in sight.

Over the years, we have been our daughter’s advocate as we challenged the education system (demanding an appropriate and challenging IEP); the health care system (demanding appropriate medical testing, diagnosis and treatment); and government agencies (demanding appropriate social support services).

We have spoken to government legislators on her behalf as they considered eliminating programs that support and empower her and others with special needs.

And we have joined with her physician to advocate for coverage when health insurance has denied her claims.

Our advocacy has also included supporting initiatives such as expanded Newborn Screening, which tests babies for over 60 inherited genetic disorders. We are passionate about this cause because we know that in many cases, early detection can mean the difference between life and death.

Being an effective advocate requires preparation and practice. Here are some tips:

Educate Yourself. Learn all you can about your child’s medical condition and the current state-of-the-art in treatments. Discover the appropriate social services available to your child and how to obtain them. Connect with other parents who have already traveled down this bumpy road so that you can avoid the potholes that they encountered.

Know Your Rights. I found that becoming a “pseudo-lawyer” has made me a more effective advocate. I learned about special education law. I learned about government rules of qualification for social services. And I’ve learned about wills and special needs trusts to make sure that my daughter is taken care of when I am gone.

Take Action. Procrastination is the enemy of an effective advocate. You might blame the delay on the lack of time. But more often it is the result of denial or fear. I have found that by simply taking one step at a time, you can overcome procrastination.

Rocking the boat is never fun or easy.

The system will work against you. It will demand that you complete endless forms, evaluations, more forms, justifications, reviews, approvals and yes, more forms. Answers will be delayed until you force the issue.

Keep in mind that you are asking those managing the system to approve something special, to spend more money, or make concessions that may require a detailed study or higher level approval. These things take time. Often the system counts on you giving up. But for those who are persistent, the rewards are great. Your child gets the support they deserve.

For an advocate, that Japanese proverb SHOULD SAY …

The nail that sticks out is where I hang my hat

Stand strong for your child.


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