Over the past two years, our newsletter has been having growing pains, first in changing from a hard copy to an email version and now we are in the midst of improving its format.  We hope to unveil the revamped version in the near future.  I am now pleased to be writing this article for this month’s issue.  My last article, written over two years ago, discussed some of the difficulties my family faced in attempting to obtain educational accommodations and outlined the strategies which proved to be successful for us.  As many of our members may now face similar challenges, I thought I would again revisit, update and review some of the key points made in that article.

My wife and I have been fortunate because our two sons have been successful in attaining many of their goals through hard work and dedication.  Occasionally, however, our involvement and support were necessary to ensure that appropriate accommodations were provided.    We quickly realized that such involvement had to be carefully planned and executed in a non-adversarial tactful way.  One had to be careful not to antagonize teachers and school administrators, but, also, at times, be firm and reasonably demanding.  Parents must endeavor to educate the school about their child’s issues, evoke sympathy if necessary and get the school to be their allies.

Now, years later, I often speak about these same themes when parents in my pediatric practice come in to discuss their children’s various educational difficulties.  One of the advantages parents of children with TS now have is that with the recent re-authorization of the Individuals with Disabilities Education Act and the explicit designation of TS under the “Otherwise Health Impaired” (OHI) category, TS is specifically cited as a possible handicapping condition.  This is a powerful tool which parents can now use to get the needed educational accommodations for their children.  Misinformed or misguided teachers, administrators and staff psychologists can no longer deny accommodations solely because they think TS is an emotional or behavioral problem.  TS is a genetically and neurobiologically based disorder.

This does not mean, however, that every child with TS will qualify for an accommodation plan.  In each case, specific objective criteria, such as the results of psycho-educational testing, must demonstrate that the condition has a significant detrimental impact on the student’s education.

In summary, reviewing everything we have learned over the years, my wife and I have come to the following conclusions which may help others:

• Don’t assume anything---Even if you or your child has received accommodations in the past, it doesn’t mean it will automatically happen again.
• Keep a paper trail---Keep copies of documents, letters and emails from schools, standardized testing organizations, and consultants.
• Advocate---Never stop trying, whether you are dealing with a school, a testing entity, the workplace, whatever.  But don’t start out as an adversary either.  You often can accomplish more with a positive approach. .
• Carefully address disability criteria---In submitting documentation, address the required criteria very specifically.  The ADA defines a person with a disability as “…someone with a physical and mental impairment that substantially limits one or more major life activities such as…learning…”  According to the ADA, a substantial limitation exists when the disabled person is compared to the average person in the general population.  However, beware.  Having a diagnosis of TS is not enough.  Unfortunately, because the ADA definition of disability is not a black and white one, it can be interpreted differently by various educational organizations.
• Use professionals--- Even if the individual with TS is an adult, no one person could or should have to deal with many of the details on their own. Get professional help if necessary. Utilizing tutors, psychologists, psychiatrists, educational specialists, college placement advisors and educational attorneys can really make a difference. They know how to formulate a strategy. Yes, it can be costly, but it has the potential of a big pay off in the end, both in terms of time, aggravation and, most importantly, in the ultimate success of the individual.
• Get involved--- There are many excellent reasons to become involved with the Tourette Syndrome Association of Greater Washington.  Acquire information; Network with others; Volunteer with your chapter and help others in your community. Even though I am a physician and my wife an educator, we realized that our expertise alone was not enough and, many years ago, we became involved with both TSAGW and the national organization, TSA.   We went to meetings and conferences, used our contacts to get positive stories about TS into the media and became active volunteers.  Because of this and all the connections we made along the way, when the time came, we were able to get the help needed quickly and effectively.  Remember, it’s not always what you know, it’s who you know.  Get involved.  You won’t regret it!