If your child has a disability, then chances are your most heartfelt desire is to be the best advocate you can for that child. All of us as parents want to feel that we have stood up for our children and prepared them for the world to the very best of our ability. In the case of a child with special needs, this can be an especially daunting proposition. Here are five practical steps that you can take as a parent that will move you closer to that goal.
1. Get educated
It's important to find out everything you can about your child's specific disability. Read everything you can get your hands on! Look specifically for local and national organizations that provide resources as well as tips and educational methods that have been most successful for children with the disability in question. Once your child is school age you will also need to educate yourself about the Special Education process and your child's rights under the Individuals with Disabilities Education Act (IDEA).
2. Get connected
Connecting with other parents of special needs kids will be an invaluable source of emotional support as well as expertise. No one else can offer you the same type of insights into your local school district as parents whose children have been there and worked with those teachers and principals. If you aren't comfortable with face-to-face support groups, then the Internet can supply the next best thing. Online support groups are springing up all over the web. Take the time to find a group whose membership seems knowledgeable and whose tone puts you at ease. You want to be able to share your questions and concerns openly or the support group will do you little good.
If you're not sure where to start, search for groups related to disabilities, parent advocates, or your specific diagnosis of interest (i.e. autism). The bottom line is -- it helps to have the support and encouragement of someone else who TRULY knows what you are facing. If groups aren't your cup of tea, find at least one other parent you can befriend for mutual venting and brainstorming.
3. Get organized
Create your own advocacy notebook with separate sections for school records, medical records, professional evaluations, letters and notes from teachers/school staff, and one for information you've gathered specifically about your child's disability or special education laws/regulations in your state. It's also helpful to keep a copy of letters you send to the school or other professionals regarding your child, along with an informal log to track information and commitments gathered on the phone. Take your notebook with you to meetings. You'll not only be better prepared, but you will almost undoubtedly be recognized as a more professional member of the team (which you as the parent, most definitely are)!
4. Get specific
As your child's advocate, the most important skill you can have is the ability to make sound decisions. To make the best decisions, you need to have before you the best options and the most accurate information. When you need more information, ask for what you need and keep asking until you get an answer. If you would like to see something different happening with your child's therapy or education, make your request in writing and share any suggestions you have or ideas you would like to see explored. You don't have to have all the answers, but you may be the one who has to ask questions to get an issue on the discussion table. Plus, if you've done your homework and already know about possible solutions -- no one can tell you that it can't be done!
5. Develop your communication skills
It will frequently be important to use your two greatest tools (assertiveness and persistence), but don't fall into the destructive trap of using anger or aggression. These emotions will only damage relationships and distract people from where the main focus should be - on your child. If you are uncomfortable dealing with a room full of professionals who "know all the answers,” remember that you are the only true expert on your child. Always remember that you are the most important person in your child's life. Get help, get support, find resources, but never allow others to replace you as your child's greatest advocate and cheerleader.
Your program is here to help you along the journey of life. No situation is too big or too small. When you and your household members need assistance, reach out anytime and we will help get you on the right path to meet your needs.
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