A parent who is suddenly thrust into the special education system after their child experiences a traumatic brain injury is likely to be feeling a lot of turmoil. Not only do they have to cope with the fact their child has sustained such an injury and have to come to terms with this, but they also have to simultaneously deal with wading through the special education system.
Dealing with special education laws can be both daunting and confusing. In order to advocate for a child with TBI, or any other learning disability, it helps to understand both federal and state laws, any special education jargon and acronyms, and how to participate in the inevitable individualized education program (IEP) meeting.
Many children that have a TBI have additional educational needs that are not provided in the general education environment and require either an IEP or 504.  Whichever education plan a child is suited to, there will be a need for advocating. Since parents know their children best, in most cases, they are the best advocates.
Discovering your child's educational needs spans beyond the scope of a general education is often hard to accept. While this is difficult enough, being thrown into the bureaucratic system which comes with special education can make things feel downright overwhelming.
The best approach is to break it down and digest one segment at a time as this will make the process feel less stressful.
It is vital to understand both parental and children's rights when it comes to special education. Being informed about special education laws is important, and a good place to start is to become familiarized with the laws, policies and special education terminology. This can help demystify the overall process and get you on the path to becoming a great advocate.
Schools and state education departments offer a wealth of information on special education laws; these brochures and pamphlets are a good starting point. The information can also be found on official websites (and legal blogs are a good source too, provided the person(s) running it is both experienced and knowledgeable).
Another good step is take is to talk in-depth with your child's primary physician and any specialists he or she sees. Thoroughly understanding TBI is important because not all school professionals are as educated in all the different types of learning disabilities as you might assume. Most schools have firm knowledge of disabilities, but not always with every single type and since no two traumatic brain injuries are alike, parental input is very important. Head injury is unique and the issues associated with TBI sometimes throws schools a learning curve, especially since they might not be consistent on a day-to-day basis.
Attend Meetings and Conferences
The idea of attending multiple meetings and conferences can feel overwhelming, but it is in both you and your child's best interests to attend all of them, or as many as possible. To be effective as an advocate, it is important to stay continually involved with each step of the special education process. To be a good advocate it helps to show a consistent presence and be actively involved in the decision-making process.
Developing relationships and maintaining routine contact with teachers, service providers (if related services, such as therapies, are needed) and administrators can help you be a better advocate. This way everyone knows where the other is coming from and this helps open the lines of communication in the event a disagreement or misunderstanding arises.
Taking an active part in each step of the IEP or 504 process goes a long way in terms of advocating for your child. Due to the unpredictable nature of TBI, administrators do not always understand a child's needs; however as a parent you can have invaluable input.
Don't Be Afraid to Speak Up
Sitting in a room with perhaps many people can feel intimidating, however, if the discussion does not seem right or you are not comfortable or in agreement with decisions being made by educators, do not be afraid to speak up.
As mentioned earlier, you know your child best and likely have a better overall assessment of your child's needs. While some educators have a basic understanding of TBI, it is hard to really know the issues associated with head injury unless you have lived it or have had a lot of experience with students who have TBI.
It is not uncommon for educators to attempt to group or attribute certain behaviors to be aligned with other disabilities, and this often has a significant impact on your child's learning. TBI is a unique disability due to the distinctive nature of head injury and should be treated as such. Speaking up not only dissolves concerns, but also prevents difficult situations down the road.
As your child's advocate it is vital to develop relationships with your child school. Work with your child's educators and the administrative department, not against them. Ways you can do this is to volunteer in the classroom or offer to help out in other areas of the school.
Partnering with your child's school helps you better understand the process and the education environment, and is also a way for you to give something back. Taking an active part in the school setting not only helps your child, but it gives you a chance to network and develop relationships with the school community.
Carefully Choose Battles
This is an important one. Sometimes parents fight an uphill battle and in the end this can have a negative impact on the child's education. It is more than likely at some point along the journey that disagreements between you and the school system will arise. Some battles are worth fighting - others, not so much.
For instance, there could be times underlying budget issues exists and administrators may try to deny services. Other times your child may have outgrown a particular need or reached a benchmark and the education plan may need to be updated and/or adjusted. With TBI and children, many issues do not arise until they are older since it cannot be seen which areas of higher level thinking have been impacted.
[ Related Reading: Cognitive Challenges Associated with Traumatic Brain Injury ]
If a committee recommends change, it is a good idea to first listen to their reasoning before rejecting the idea. While you know your child best, sometimes it is hard to be objective. However, this also does not mean the education system is always correct either, but hear them out. Then choose battles wisely, especially if the changes seem to have to do more with money issues and not the needs of your child. It is a good strategy to place more emphasis on the services you feel are most important to your child's needs and don't fret the small stuff because in the end the goal is to have the best educational structure possible for your child. In my personal experience, it is much more effective to be an assertive parent, not a combative one.
Take Notes and Keep Records
A paper trail is essential when advocating for your child. This means to keep the actual education plan document, minutes from meetings, and any written communications. Provide the school with medical updates and testing doctors have done relating to the TBI.
Additionally, it is a good idea to save personal notes taken during meetings and/or conversations, write down dates and who you spoke with in case an issue arises in the future. There will undoubtedly come a time when you will need it to review or use as reinforcement and it helps to have an organized file with everything documented.
If you get overwhelmed in the process, there are often other experienced parent advocates who volunteer in the school district that will go with you to meetings and help you learn the process. Ask the school's special education department to give you a list. Do not be afraid to ask for help as you learn the process if you need it; support can be invaluable.
Becoming an advocate can feel frightening at first. However, do not worry - you can do this. By digesting the process one step at a time, gaining a thorough understanding of the nature of TBI, and following good advocacy processes, this will help prepare you to grow into the very important role of acting as your child's advocate.