By Laurel A. Falvo

I have accepted that my job as a parent of children with special needs is to EDUCATE! This includes educating physicians about ASD (especially when they have limited and/or outdated information about autistic spectrum disorders), educating teachers about how best to manage differences in the classroom, educating the insurance companies about my children’s needs and how they can help us meet those needs, and educating friends and family members about my needs and those of mychildren.

Although it can be very rewarding to pass along information that I have gained over the years, especially when I see positive results from it, it can also be tiring and discouraging. I have talked with numerous parents who feel they should not have to tell their story one more time; they should not have to tell other people what their needs are and how to meet them. However, this is an important reality, one for which all parents should be well-prepared. Following are some pointers that I have gleaned along the way.

You will at times grow weary of telling others about your child’s diagnosis and its implications at home and at school. While it is important to see your child as more than a diagnosis (in fact, autism is just a small part of who our children are), there will be many occasions when their ability to interact with others in a positive way will depend on the understanding that other people have of autism. A large barrier that we contend with is an ignorance of the meaning of that diagnosis, particularly with regard to the ability of persons with autistic spectrum disorders to participate socially. Some people assume that our children are incapable of learning. You may need to educate family members, physicians, teachers, therapists, church members, babysitters or care givers, and even strangers that you encounter in the grocery store, library, or in front of your own house.

Do not be afraid to ask for help. Frequently adults view the need to ask for help as a sign of weakness. Many of us believe that we should handle everything ourselves. However, we often feel honored when someone asks us for help. Remember that most teachers are appreciative when you acknowledge their expertise and their knowledge of your child by asking their opinion regarding ways to help your child. Friends are often eager to assist us when we ask them to attend an IEP with us or babysit while we go to a doctor’s appointment. Fellow church members might surprise you with their willingness to provide meals during a medical emergency. Do not be afraid to ask ... the worst that can happen is that someone will say, "no." By asking, however, you give people the opportunity to assist you.

Remember that "the squeaky wheel gets the grease." I have always been a "non-confrontational" person. I prefer to stay on the sidelines, and desire to have people like me. I do not want to get in anyone else’s way. However, I have learned that there are times when I have to be assertive. If I do not let people know what my child’s needs are (as well as my own), they may never know! I need to keep asking questions until I get satisfactory answers. It is easy for a teacher, therapist, administrator, or physician to assume that all is well, unless you instruct them otherwise.

Keep good records. Unless you have already been navigating a special education or medical system for a long time, you may be surprised to learn that you might be the only person who has access to all of your child’s records at one time.  I have been to countless meetings where a physician, teacher, or therapist says, "I never received a copy of that report." I have learned to keep copies of all reports, and to have them available to make copies to distribute at a moment’s notice to those who need them. I have a binder for each of my sons, in which I keep all of their doctors’ reports, therapists’ evaluations, and school documents such as IEP’s. I also keep a list of our doctors’ visits and the results of those, and changes that I see in my children.

Periodically I also take a written "snapshot" of my children by writing down where they are at socially, emotionally, physically, in speech and language, imagination, special interests, fears, and other important areas. This helps me to see how they are changing and progressing, where they excel, and where they may need additional help. I especially recommend this for children who are going through the diagnostic process. Often, a doctor has limited time to spend evaluating a child, and the behaviors that they see in their office may not be the same as what the parents see at home. Having documentation of your child's typical behaviors can assist you and the doctors, therapists, and others as you seek to determine not only the child’s diagnosis, but also appropriate interventions for the child. (I also keep articles about Asperger’s Syndrome to give to anyone who may be interested in learning more!)

I have also found it helpful to keep a list of each child’s milestones. All too frequently, you will encounter paperwork that needs to be completed (for a doctor, teacher, school system, etc.) which will ask for similar information: When did your child begin rolling over? Crawling? Walking? Talking? Having this information on one piece of paper which can be accessed each time there are more forms to complete saves hours of digging through the baby book and wracking an increasingly dim memory.

Be well-prepared for your child’s IEP. Every child who requires special education services should have an Individualized Education Plan (IEP) on record that specifies his strengths, weaknesses, and a specific plan for accommodating them. This document is written at a meeting between parents, teachers, therapists, and administrators. It is legally binding, and assures that the child will receive all the special education services that he needs (as determined at the meeting).

One of my most effective means of preparing for an IEP is to write a letter which I give to the teachers, therapists, and administrators who are involved with my child. I write this letter a couple of weeks before our IEP meeting (sometimes referred to as the IEPC, or Individualized Education Planning Committee). In the letter, I state what my husband and I believe to be our son’s strengths and weaknesses. Recently I have also been getting my child's input prior to the IEPC. This seems to help them to view the therapy that they receive as less of a mystery or a burden, and more of a chance to get help with the things that they perceive as difficult. I appreciate their input and insights, which are sometimes different from my own, but are always offered in a genuine, honest way. (An older child might benefit from attending his own IEPC, if there can be an assurance that the meeting will be conducted in a positive, professional manner.) In the past, I have even written some goals that I think I might like the team to work on during the next year. I then ask for the professionals’ input, including evaluation results, my child’s strengths and weaknesses as observed in the classroom, and changes or additions to my recommended goals. I always look for ways to encourage the teachers and staff, and to thank them for the work they have been doing with my child. This letter usually generates a great deal of information from the professionals, as well as dialogue, prior to our meeting. When we sit down at the table together, it is as a team which has already been working together, and is focused on the best interests of my child. Following this process, there is rarely new or surprising information presented at the meeting, since most things have been discussed previously.

Another distinct advantage to writing a letter in preparation for an IEP is that you then have all of the information in writing. Should problems arise, you have proof of your contact with the school officials, and of the issues you planned to discuss.

Know your rights! You should know that an IEP is a legal document; any services specified in the IEP must be provided and enforced by anyone working with your child. You have the right to request a new IEP at any time. You do not need to sign any documents unless you are in agreement with them; in other words, you may leave a meeting without having signed the documents if you need more time to think about them or to get additional information. You have the right to have an interpreter if needed. You have the right to receive evaluations and reports concerning your child prior to the IEP meeting (although you may have to ask for these, since some professionals do not prepare these documents early enough to present them to you before the meeting).

It is important to read the documents that you are being asked to sign and to do research regarding your rights. If you are unsure what your rights are, or believe that your school system is not adhering to the law, you can bring an advocate along to your child’s IEP meeting. For that matter, you may bring anyone (for instance, a spouse, friend, or your child’s former teacher) along for information or support.

You should be aware that the IEP paperwork is supposed to be completed during the meeting, not before it. Some school districts or administrators, for whatever reason, may try to fill in the forms before meeting with you. However, not only is this illegal, but it puts the parents at a disadvantage. Often parents are too intimidated to disagree with what the professionals have written. Once, although  I had come prepared with a list of things that I wanted included in my child's IEP, I left the meeting with a signed document that did not address all of my concerns. Instead of writing them all down on the IEP during the meeting, I put in a position of reviewing the IEP that the social worker, occupational therapist, speech and language pathologist, and psychologist had already completed. Trying to "fill in the blanks" with my additional concerns, I ended up missing several. A parent in this situation is forced to simply react to the actions of the professionals.

For more information on preparing for an IEP, I recommend reading the book How Well Does Your IEP Measure Up? by Diane Twachtman-Cullen and Jennifer Twachtman-Reilly, or The Complete IEP Guide: How to Advocate for Your Special Ed. Child

Do not assume that everyone is serving your child’s best interests. Fortunately, most teachers love children, and are committed to educating them according to their learning styles, their strengths, and their weaknesses. Most doctors are dedicated to providing the highest level of care for their patients. Reality shows that this is not always the case. Sometimes teachers and school systems are so governed by politics and finances, or overwhelmed by large or difficult caseloads, that they are unable or unwilling to meet the needs of individual students. Occasionally, doctors are too busy, or are so restricted by insurance providers, that they will not order necessary tests or try innovative approaches to treatment.

As an advocate for your child, it is your responsibility to assess the situation. When you believe that your child’s needs are being met, express your gratitude to the team member providing the service. However, when you are concerned that this is not the case, talk to the service provider. If you are unable to make progress through discussions, consider getting outside help in dealing with this person, or find a new service provider.

Do not allow others to limit your child’s potential. A friend once called me about concerns regarding her teenage son’s schooling. He was in a special education program where he was spending part of each day bagging groceries at a supermarket. However, he had been unable to secure summer employment there, and the special education teacher was proving to be a barrier, rather than an asset, to that process. When I asked the mother what her son would like to do for his career, she shared that he had an interest and ability in electronics, particularly in repairing radios. I suggested that he attend the local Skills Center, where he could receive electronics training leading to future employment. Her response was that the high school he was attending would not allow him to take algebra (a prerequisite to entering the Skills Center) because they claimed he "couldn’t do it!" Discussions with the special education teacher and administrators had not brought about any resolution. So I suggested that the parents consider enrolling their son in another school. They did, and he took his first algebra class there. Not only did he prove that he could do algebra, but he did it with a flair; his final grade was a "B." Unfortunately, his first school had not allowed him to take any English courses either, so in order to graduate with a regular diploma, this student will have to complete two extra years of high school.

Remember that advocating for your child is extremely important; do not allow other people to predict failure before your child has had an opportunity to try something.

Try to maintain a good working relationship with the doctors, therapists, and teachers who work with your child. I have heard many stories of parents who are at an impasse with their child’s teacher or school administrator. It is heartbreaking to hear of a child who is unable to receive services due to a breakdown of communication. At times such as these, tempers flair, and drastic measures are often employed. Although there may be occasions when legal action should be taken, it is always wise and in everyone’s best interests to try to maintain a good working relationship with your child’s service providers. Remember to encourage them, and to thank them for a job well done. Remember that they are people too; a kind word, smile, or friendly handshake can go a long way toward healing damaged relationships, or even preventing breakdowns from occurring. This does not mean that you should "sugar-coat" everything you say to others; in fact, it is best to tell the truth, even when that is difficult. However, remaining respectful and professional even when there are tough issues to be dealt with, can prevent a multitude of problems and ensure that a mutually supportive environment is maintained.

One way of fostering a healthy relationship with your child’s teacher is to stay in touch with him or her. If you drive your child to school, say hello to the teacher or take time to discuss pertinent information, keeping in mind that it is also important that you not monopolize that teacher’s time. We have found it helpful to send a notebook each day in our sons’ backpacks. We use it to inform the teachers when there is an issue that may affect the school day, for example, if our child may be tired due to a lack of sleep, may be sad because of a death in the family, or has had a rough start to the day. The teachers and therapists use it to inform us of questions they may have, or issues that they are dealing with in the classroom. A notebook may be one way for you to facilitate communication between yourself and the various professionals working with your child, leading to consistency from one service provider to another.

If there are opportunities to volunteer in the classroom, it would be well worth your time to interact with your child’s class, serving food at a party, reading a book during story time, helping with an art project, or accompanying the class on a field trip. This enables you to form a partnership with the teacher, and to get acquainted with your child’s friends and classmates. It also provides an occasion to observe your own child, and to give you an indication of his or her social abilities, as well as the dynamics of the classroom.

Janice Fialka and Karen C. Mikus have written an excellent book entitled, Do You Hear What I Hear? Parents and Professionals Working Together for Children with Special Needs (1999). This book provides additional suggestions for successful interactions with the professionals in your child’s life.

Be open to other ideas and suggestions! When dealing on a daily basis with a child with special needs, how quickly we arrive at the station known as, "I’ve tried everything!" Whether the issue is a challenging behavior, an uncooperative school system, or discipline style differences between you and your spouse, it is frustrating to feel that you have reached the end of the line without having arrived at your destination. One thing that I have learned as I struggle to change travel arrangements (or my own idea of where I am heading) throughout my journey with Asperger’s Syndrome, is that this particular station is only a mirage. If you are able to look beyond it, you will see that this is not the end of the line, but only a crossroads. The key to being able to do this is to be open to help from others, without jumping to conclusions or being quick to dismiss an idea as something that has been tried and failed.

One way to do this is to continue to research new interventions, to read new books, and to network with other parents and professionals who are willing to share their ideas and suggestions.

Find ways to become involved in community advocacy. I have enjoyed serving on my Local Interagency Coordinating Council (LICC) formed as part of Early On. The members are comprised of individuals from various Early On agencies such as hospitals, the health department, Easter Seals, and other social service agencies, as well as other parents. Through this group, I stay informed about new developments within the community, and have opportunities to be involved in setting new policies and activities.

There are numerous ways and places to become involved. Call your local school district, or an advocacy group such as Citizens Alliance to Uphold Special Education (CAUSE), or The Arc for more information.

© 2004 Laurel A. Hoekman/Laurel A. Falvo