Imagine...after months of waiting and anticipation the moment has finally arrived! Your beautiful baby enters the world and life is the fullest it has ever been! As the nurse gently places your newborn in your arms she slips a book into your hands. “This is your child’s manual,” she explains, “Be sure to read it as soon as possible. Oh, and pay close attention to the section regarding special needs.”
A crazy scenario, I know but, at times I wish that I had had that manual! Navigating the parenting role is tricky at the best of times but, finding your way with a child that has special needs is even more demanding and difficult. This is a path that may not have been traveled by family and friends. Loneliness, disappointment, frustration and a sense of failure can make the journey miserable. The challenges can become overwhelming once your child reaches school age. It is at that time that you enter a whole world of professionals that will have your precious child for six hours out of the day! It is a world that is a culture unto itself with its own language and its own set of rules. You may feel like an outsider. You may feel that you need help. You may need someone to act as an interpreter in this new land.
You begin the investigation…look on the Internet and the Yellow pages…..can someone out there help me do the best for my child in school? Before you choose the person who will be your guide and advocate for your child, you must do some homework, for the sake of your child and for your own sanity. There are many people who call themselves advocates but, it is up to you, the parent to make an informed decision as to whether the person is truly qualified to advocate for a student with special needs and whether this person is a “good fit” with you, your child and your goals. Take the time to do your research; the decision you make can literally affect your own and your child’s life in ways that you never dreamed possible. The person that you choose will impact your relationship with school personnel, your spouse, your child and the members of your family. The advocate will have a direct effect on your marriage, your personal relationships and your family. You are inviting someone to enter into your world. Be very careful to whom you give this precious gift.
What role can an advocate play?
• Assist parents in finding supports and resources that are available
• Model effective relationship building and problem solving skills
• Listen to all parties in a genuine and nonjudgmental manner
• Clarify issues
• Suggest options and possible solutions
• Document meetings or help parents to understand documents such as psychological assessments
• Locate and provide information
• Speak on the parent/child’s behalf when they cannot speak for themselves
• Help the family with written correspondence, documentation or phone calls
• Attend meetings
• Follow up on decisions made and actions taken
The following are a few points to ponder before deciding who you will choose:
Advocates should have the qualifications to be able to speak with integrity and knowledge about exceptionalities in learning.
A high level of qualification brings a level of respect to the table. Humans are far more likely to listen to someone who has “walked in their shoes” and has experience in education and special needs. It is probably safe to say, that very few people are willing to modify their own expertise and professional methods based on the ideas and opinions of someone who has little or no experience and credentials in the field. As an educator, sitting in meetings with someone who has no special education qualifications and have them point out your deficiencies is a waste of time and money. Any parent who has experienced being lectured on the best methods of raising children by a person who has no children, may know how frustrating this can be. Teachers are more likely to be open to the opinions and suggestions of someone who is at least qualified to make such statements. It makes sense that if you want to cultivate the best education for your child, you would expect an advocate that had the special education credentials and experience that would enhance your role as parent. Maintaining professional development by attending conferences, keeping up to date on current policy documents and procedures are important qualifications to have. Special education is a constantly evolving science and an advocate must be up to date. A solid knowledge of local resources, services providers and community programs facilitates problem solving. It is equally important that the advocate you choose have the interpersonal skills necessary to work collaboratively with others to create solutions. As a parent, expect the person that you hire to be qualified to help you to work with the school.
Advocates should know your child.
People who are chosen to represent your child need to read assessments, report cards, interact and spend time with the child in order to really know who they are working for. Then the role of advocacy is authentic and not a matter of fighting for a cause or for an ego boost. When an advocate knows the parent and the child well, he or she can help to uncover the common ground between school and home. The advocate should be able to explain how your child’s disability may impact their learning and then work with you to help prioritize your child’s needs. A wise advocate is someone who will look for solutions and not blame. Advocates should see the child in the context of his classroom. A child’s program on paper can never tell the whole story. There is no way that a teacher can put into words all of the supports, plans, visuals, tools and strategies that are employed to make the child successful. The child’s world tells far more than any documentation could ever describe. It is important to note that entering a classroom is opening a “sacred trust.” Just as you would not let someone that you do not trust into your home, teachers must be wary to whom they open their classrooms. If someone is entering the room to “observe” and then report back to the parent all of the things that they think are being done incorrectly and to “build a case” against the school, the relationship has then been destroyed. Would you want someone coming into your home to “observe and critique” you as you carry out the daily functions of parenthood?
Advocates should be objective and solution minded
While interviewing an advocate, listen carefully for language that promotes solutions rather than vengeance. The advocate’s personal experience with a school district, board, or previous personal history has no place in the discussion. This is about YOUR child. The advocate may utilize background knowledge of the people and resources to facilitate a workable plan for your child. In order to secure a positive proactive response from the people that are in relationship with your child, the advocate is best to be respectful, courteous, and considerate and open minded. Of course, this is true of every member of a team.
Can the advocate help your child access the best education possible without putting undue stress on the resources and personnel involved? Sometimes in the hopes of helping a parent, promises are made that are overly taxing on a personal or financial level…the school must educate all students, not just yours. Parents may disagree and say that it is really their child that they care about. While that is very true, schools cannot operate on this premise. Educational institutions have a duty to look after the collective while at the same time ensuring that each individual receives what is needed. It is not fair to assume that school staff should take from one child in order to provide for another. Imagine someone suggesting that a parent take away resources from one of their children in order to give to another. There are solutions that can work for everyone. We need to be searching for them as a team.
Advocates should be facilitators not dictators.
Listen and observe an advocate carefully. Are they talking as if they are going into battle? Using words like “them” and “us?” Watch for an ego that is using your child to feed itself! Egos look out for egos, not children. Red flags should wave wildly when an advocate sees only negatives in a child’s education, or when promises of specific outcomes for your child are made. An advocate that speaks with an “I’ll show them,” attitude is not going to effectively negotiate a plan that makes everyone want to do their part. Problems are not solved that way. Children do not win in these scenarios.
Humans need to be acknowledged for the effort that they invest; we need to feel supported and respected. We are more open to solutions when we are not feeling defensive. No person, neither educator nor parent, should leave a discussion feeling that they have been ignored, rejected or discounted if they were genuinely promoting a child’s needs and not their own. When the disagreement lowers itself to the level of acting like children who are demanding that everyone play by their rules, the child with special needs is no longer the center of the discussion. An advocate is worth their weight in gold when they can objectively look at a situation without an emotional charge and create solutions that work for the child.
Each member of a team has a perspective on how to best help a child: a principal, community agency member, speech pathologist, teacher and a parent have ideas that stem from their training and experience. A skilled advocate is able to listen to each member’s ideas and see solutions that draw on the strengths of each person at the table.
Ultimatums, threats and accusations drive a wedge between parents and teachers that is extremely damaging to the child because the message that the parent is giving is that they trust this person more than the teacher.
The End of the Road
As a parent, it can be intensely frustrating when you feel that a system is failing your child. At times, the anger and resentment can be too much to bear. It is easy to fall into the trap of vengeance and revenge. Going to the press or calling a lawyer should never be done without serious thought of the repercussions. These actions should never be born from an emotional reaction. The cost will be high. Before taking any action, the question that should be front and center is: “How will this benefit the child? How could this hurt the child?” It is all too easy to get caught up in the feeling of retribution. When we feel helpless it is almost intoxicating to gain a sense of power. We need to be honest with ourselves about what is driving our course of action. Before taking such steps, consider that your child may have many years in school ahead of him. Your child’s siblings may have many years in the educational system. The damage caused by legal action and/or public humiliation cannot help but affect your relationships with the very people that you will rely on to give your children the best. I am speaking of the deep-seated hurt, mistrust and fear that sinks into the soul of anyone that has been affected by litigation and bad press. Public humiliation and bad press may make a school system give in to your demands but it does nothing to draw out the best of any human being or relationship.
This is not to say that legal action is not necessary at times but, it is a LAST resort. Advocates may or may not be affiliated with an attorney but they are not lawyers and they should not be giving legal advice.
Hiring an advocate does not take away the parent’s role in decision making. Advocates make sense of the documents, technical language and educational jargon. They may explain options or the requirements of special programs, attend meetings and ask clarifying questions but, as the child’s parents, you make the decision. Your child needs YOU to be in charge; your role is long term!
Educators need to listen, really listen to what it is that parents are asking for. We may have to sort through layers of hurt, anger, resentment and fear to see the authentic concern for their child. I believe that most times we can meet the requests of the parent at some level. Look for common ground.
The relationship between parent and school can be difficult because a child’s life is at stake and emotions run high but, with hard work, respectful dialogue and child -centred problem solving, it is possible to work as a team to make the most of a child’s education. It is up to the adults to make it work for the sake of the children.
Jennifer Krumins is a full time teacher in Ontario, Canada with 18 years of experience in special education and the regular classroom. A mother of three (one of which has autism) she is currently teaching severely challenged teen boys and girls with autism. She is the author of two books:
Been There. Done That. Finally Getting it Right. A Guide to Educational Planning for Students with Autism: Lessons from a Mother and Teacher.
One Step at a Time: ABA and Autism in the Classroom; Practical Strategies for Implementing Applied Behaviour Analysis for Student with Autism