Advocating 101: How to Write a Letter

Many of you may have heard about the Communication Shutdown campaign, originating with an organization in Australia. The premise is to draw attention to Autism as a cause, by mimicking the effect it has on autistic people. Everyone is urged, under this campaign, to stay off all social media for one day (today -November 1).

You may notice I'm still here.

Most other autism bloggers are still here today too. At least the ones I know. While I think there is a general respect for the organizers' good intentions, there is a stronger respect for autistic people's right to not be seen as silent victims. As a strong supporter of the neurodiversity movement, I share this intrinsic sense of respect for autistic people, including my son.

On the positive side, this event has spurred some of the best blogging and networking we've seen this year. It's all revved up, all riled up, all dig-down-deep, and speak-up-loud stuff.

Today Hartley Steiner moderated a tweet chat for The Coffee Klatch in response to the Communication Shutdown, while on her blog she announced her new slate of permanent contributors. I am proud to count myself among them. You can check us out here.

In another corner of the virtual universe, one of my favourite autism bloggers at What We Need, wrote a profoundly moving and deeply personal post as her response to the Communication Shutdown. She and I connected early on, sharing the emotions we felt in two very different, but painfully similar, incidents we both endured with school professionals. She had tried many times to write down her feelings about what happened, but until now, could not find the words to describe how devastating it was. I know that feeling of devastation, when you feel your child has been betrayed by those you trust to care for them during the day. I wrote about it here.

My contribution to the response to Communication Shutdown is something a little different. Others who are participating in this response today have already said what needs to be said - very eloquently - about the need to speak out in support of the rights and needs of our autistic children. What I want to write about today, is specifically how you can most effectively accomplish that.

Odds are at some point (or many points) you are going to find yourself in a situation where you need to write a letter to the powers that be, in your role of advocate for your child. A masterfully crafted letter can be an incredibly powerful weapon in an advocate's arsenal. I've spent much of my professional - and personal - life drafting letters that are designed to effect meaningful changes. It's one of my favourite things to do (yes, I'm geeky that way). So to help you find the most effective ways to word your own letters, I've shared some of my suggestions, along with examples from letters I've written as Simon's advocate, below:

First – make sure you are writing to the most useful and appropriate person. Do your research before you decide who you will address the letter to (use the internet to look into the government departments and agencies you should be targeting). There is politics and protocol involved here – if you send your letter to the wrong department, it could take months to get to the right one. If you aim too low in the department, your letter may literally go nowhere because the person you sent it to is clueless about its proper destination. If you aim too high, you may offend and lose the support of the person who should have heard your concerns first, because you went over their head too soon and now their boss thinks they aren’t handling their responsibilities.

Once you know your audience, open with a powerful paragraph that demands attention, and sums up the key issues. It should also touch on their significance in terms of impact on your family/child AND on the recipient of your letter. Don’t belabour your points here, just touch on them, in the order your letter will deal with them. For example:

We are currently in the midst of a very challenging situation as we try to secure funding for an Educational Assistant (EA) for our young autistic son who endured a heartbreaking incident at school in November of last year. This letter is an appeal for your help.

Be respectful, but firm. Use language that affirms and legitimizes your concerns, not language that undermines or apologizes for it. For example:

However it is completely unacceptable that, after being put into this position by a school that treated our son so atrociously, and then doing our best to start all the necessary processes to find the right educational environment for him, that we should be shut out of all options by a deadline. Working for the federal government, we are well versed in the need for deadlines. We are also very familiar with the need for deadline exceptions.

Limit yourself, if at all possible, to no more than 3 key points. Any more and they lose their impact. While you may have literally dozens of concerns, be realistic in your expectation that they’ll all be addressed. The goal is not to merely complain, but to effect change. To do that, you have to do one of two things: capture someone’s heart, or make them fear embarrassment. Preferably both. So focus on your absolute top priorities – the ones that will have the greatest impact for your child.

Find ways to illustrate how your expectations will benefit not only your child, but the recipient of your letter (or those they are responsible for) as well. Build bridges, don’t burn them, not matter how angry you may be. For example:

Not all children need special consideration, many fare very wel on their own. But Simon does require special consideration. As his parents we have done everything we could, with what we knew of the system, to follow the official process for finding him the right school. All we are asking is for the opportunity to review, with the Division, which schools may be the best fit for Simon’s academic and social-emotional well-being. Surely this is in the best interest of everyone – the Division, its schools and teachers included.

Be honest in your accounts and don’t exaggerate (or understate) the facts. For example:

This was very distressing for our family, at a time when I had recently lost my mother to cancer and shortly after gave birth to Simon’s baby brother. We could not convince his teacher that there must be something underlying Simon’s behaviour, that he did not simply have a “behaviour problem”. The Principal understood our concerns and repeatedly directed Simon’s teacher to work with us, but to no avail.

Conclude with a clear, succinct summary of what you expect will happen in response to your letter, and why your expectations are legitimate. And if applicable, why they are legally required. Know your child’s legal rights and the legislation and regulations governing the department you are approaching. All of that information is available online. In the US, http://www.wrightslaw.com/ is considered a one-stop shop for legal information on special needs education. In Canada, provincial Department of Education websites are the best source for this information.

In time-sensitive or controversial situations (I recently read a parent board post from a mother who discovered her autistic son had his mouth taped shut during the day at school) don’t be afraid to state explicitly what your next steps will be if your expectations are not met. Be careful not to use language that sounds overtly threatening. Instead, use language that depicts you as a competent, determined parent who means business.

End with a cordial but official salutation, such as “Thank you in advance for attending to this important matter” or “We thank you in advance for your much-needed assistance in this important and time-sensitive matter”.

Be sure to know who it is appropriate to cc on your letter – anyone you feel should be aware of the issues you are asserting, such as your child’s school principal or superintendent, psychologist, pediatrician, heads of related departments, your OT, etc. The extra effort it takes to CC other departments is often worthwhile - government departments do talk to each other, and if one is worried about the fallout for themselves, they will often pressure the other to rectify the situation expeditiously.

Always keep a copy of your outgoing and incoming correspondence.

If you don’t receive a response – written or otherwise – in two weeks, follow up with a phone call indicating that if you do not receive a response within the next week, you will be asking to speak with that person’s immediate superior. Always maintain a calm, firm, and professional manner on the phone. The last thing you want is your name to become synonymous with “wacko mother” in the department or agency you are trying to engage. No matter how frustrated you become, and even if you are reduced to tears, always communicate in a rational way to effect the greatest change.

Letters really do result in meaningful changes. The pen is mightier than the sword has never been more true than in our ongoing efforts to communicate our children's needs, and rights, to those who hold their futures in their hands. Don't let important decisions be made without your input, and don't be afraid to write a letter. The cost of a stamp may well be one of the greatest investments you ever make for your child.