The following is excerpted from Sarina Auriel’s upcoming book entitled “The Art Of Advocacy: a guide for parents and adults who care for children with special needs.” Sarina Auriel has her MA in Integrated Special Education and Health and is in private practice in Vancouver.
- You are an advocate.
The most important first step you can take is recognizing yourself as an advocate and acknowledging yourself for it. This is not because someone has told you that as a parent you make the best advocate for your child, but because you can recognize the times of advocacy that in fact have been a part of your life already. Look at your life and the various situations that you have encountered with your own parents, friends, affiliations, organizations, and groups that you belong to. Remember when you decided to take a strong position in the past and advocate for it. This process will just solidify in your mind the innate desire you have for advocating for your child and the natural tools that you already possess.
- Set your goals.
You alone know what is ultimately in your child’s and family’s best interests. Sometimes you have to lower the bar because you know that if you push too hard the people involved may take their frustrations out on your child. Sometimes you have to raise the bar knowing that it will be the only way to get anything done in an appropriate manner for your child. Whatever your choice be very clear with your thoughts, words and deeds around this goal.
- Goal distractions.
Always keep your eye on your goal and your best possible final outcome. This will help to not get caught up in distracting side battles. Know what you ultimately want to achieve and don’t worry about the rest. Do not let anyone distract you with trying to set up side issues and challenges.
- Educate yourself.
This is looking at your own case and any pertinent statistics pertaining to the issues involved. Who the opposing party is, what their jurisdiction is, what are the legal implications, what is the chain of command within or controlling the opposing party, are there any existing printed regulations that pertain to your case, are there any written constitutional rights, are there union contracts or stipulations? Etc.
- Create a paper trail.
Put everything in writing so that you have a paper trail. Even if you have a telephone conversation follow up in writing to confirm the details. Always follow up on any letter you receive. Sometimes it will be just to acknowledge the letter and sometimes it will be because some fact was incorrect. Never allow anyone to offer you anything in a conversation. Request that it be put in writing.
- Get the specifics down dates and times.
When writing or speaking to people make sure that you nail them down to dates and times. For instance if someone says that they will get back to you, make sure that you have a date and time when this will happen. “I’ll phone you next week.’ Doesn’t cut it. “I’ll phone you on Monday January 5th before noon” does. Then write a follow-up note indicating what was discussed and confirming the promised phone call on Monday January 5th before noon.
- Break down correspondence and documentation.
Whenever you receive or generate your own paperwork it is very useful to highlight all the pertinent information. After doing this, write out the most important parts of the correspondence and your thoughts and feelings around them. By doing this you are forced to take the time needed to truly digest all the facts and not miss anything, then refer back to your highlighted document.
- Professional documentation.
When accumulating professional back up documentation it is helpful to be as thorough as possible. An example of this would be a doctor’s letter. This should contain: • their educational background • professional qualifications • memberships in any professional body • present occupation and how long they have been working in that capacity • how long they’ve known your child and how they got to know your child (was it by referral?) • a statement as to the child’s special needs (diagnosis and symptoms) • their prescription for the child (therapy, medication, classes) • why they recommend such therapy • what organizations accept it as a beneficial form of therapy • any long term prognosis with and without such prescription.
- Create a firm base using data and research sources.
Accumulating various sources of the same type of information to back up your claim is very beneficial. It helps to show that you are not the only voice saying theses things about your child. It fosters greater objectivity, while giving those that have the power to make decisions on your behalf, less of an opportunity to deny your claims. You can 2 gather newspaper, medical journal and magazine articles, as well as hooking up with parent support websites.
- Find connections inside the system.
Connections are precious things. Who you know and what relationships you can foster, can make all the difference in your case. It is always wonderful to connect with someone whom I like to call a truth bearer. They can pass on tips and information that are not usually available for mainstream consumption. They can meet you in the bathroom and say what couldn’t be said on record at the table. They can send you an e-mail that they just happened to see at their co workers terminal. Be open to the possibility of finding these people and they will come. Try not to burn too many bridges because the person you think of as that inept social worker might be laid off tomorrow and be more than happy to spill the beans to you.
- Know what matters to those that you are dealing with.
Find out the weak or scary points for the opposing party. In terms of children these are most likely to be abuse and safety. These are the areas where failure on their part can produce the gravest consequences to them. It is a sad comment that things like education, self-esteem, and independence don’t carry much weight within our system. Don’t put your energy into fighting on this front unless that is the goal that you have set for your advocacy.
- How to deal with emotion.
There are many tools to help deal with the various emotions that an advocacy case will give rise to. The important thing is to remove all emotional charges from and about yourself, and yet always try to elicit positive, compassionate emotion from the opposing party.
- Learn what “no” really means.
Receiving a “No” should just be an indicator that you need to think more creatively and move outside the box of what is expected from you. I have a funny story that illustrates this very well. I had arranged for my son’s school to implement a social skills program for him that I supplied to them. To make a long story short for the social skills program to be effective it had to be done two times a week. The school offered me only once a week leaving me to hire a therapist to do the second class in my home. I did my homework (step 1) and found that I could hire my son’s SEA who was leading the class at the school without violating her contract. I also found out that contractually she had in fact the time to lead the second social skills class at the school. I therefore figured that this was the Principals decision and I knew that I was not going to get anywhere with him at the present time. What I did was to arrange for the class to take place right after school in my home. The class began and I proceeded to call my younger son into the kitchen to bake cookies, and also left the dog in the house in the hopes that he would bark at passersby out the window where the 3 class was taking place. The boys in the class were completely distracted with the smell of cookies baking, my younger son talking to me, and the dog barking. Two days later I received a call from the Principal saying that they had found the time to do the second social skills class at school because the SEA found the kids too distracted at my house. Bingo! Class at school and no cost to me. No arguing or writing letters could have accomplished what the sweet smell of chocolate chip cookies and an animated household did. Still on the subject of food, some fresh banana bread brought impromptu to a round table meeting can disarm those around you and turn a potentially hostile meeting to a more co operative kitchen table type discussion. When people let their guards down, you will find it easier to change a no to a yes. Be creative! Find the loopholes anywhere and in anyway you can.
- Keep your perspective and your life.
Lastly after dealing with all of the above you need to find some perspective in your life. By constantly writing about your child with “special needs” is that how you are now seeing him? Are you feeling like a victim and over dramatizing your life to everyone? We also need to discover our own lessons in all of this. Our children offer us an opportunity to heal ourselves, our communities and our governments.
By: Sarina Auriel MA CVT RYT