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I’ve been parenting a child with special needs (Down syndrome) for six years. Here’s what our journey has taught me about being a good advocate and getting my son’s needs met.
1. Know Your Limitations
Advocating for a child with special needs can be very demanding, so it’s important that you know your strengths and weaknesses. It's especially important to pay attention to those weaker areas, and find others who can assist you where you need it. For example, if you have limited time, partner with another parent or professional who will work as your teammate.
Children with special needs and disabilities have certain rights and protections under the Americans with Disabilities Act (ADA). If your neighborhood school, for instance, cannot provide your child with the education he or she needs, the school is legally required to provide your child with appropriate and adequate instruction, even if it must pay for your child’s attendance at another school. It is crucial that you understand the laws pertinent to your child’s well-being and how those laws function in your state.
You willingness to ask questions is the key to your child’s welfare. It is important that you let teachers, administrators, therapists and doctors know that you are plugged into the care of your child. Pay attention to what is being prescribed and ask more questions than needed. Have everything explained to you in detail. If you can’t think of any questions to ask, simply say, “Why?” after every suggestion.
4. Don’t Abdicate Your Power
You spend more time with your child than anyone, and you are the expert. Your child is most comfortable with you and you see your child in more situations than anyone else; so trust your understanding of your child and protect your power as the expert. Everyone else is there to assist you and your child. No one knows what is best for your child but you. Trust yourself when something feels off.
5. Get Second and Third Opinions
Providing services for children with special needs can be a very lucrative business because such services are mandated by the government. With this in mind, be sure you are getting services that are best for your child and necessary for his or her development. Most professionals have the best intentions, but you should always ask for second and third opinions.
You don’t want to be seen as just another parent who’s going from one appointment to the next.
6. Become Friendly With Teachers and Other Professionals
Make friends with the professionals and teachers in your child’s circles. When you see them, smile, and take the time to get to know them. Develop a connection; you don’t want to be seen as just another parent who’s going from one appointment to the next. Everyone knows that parents of children with special needs are inundated with information and appointments. Regardless of your exhaustion and overwhelming calendar, be friendly to those in direct contact with your child. They’ll appreciate knowing that you want to work with them. Having good relationships with the people attending to your child is also how you learn about changes to laws and services that are coming down the pike. This is how you learn about new, innovative tools that will assist your child’s journey.
7. Don’t Be Concerned With What Others Are Thinking of You
You can never be concerned with what others of thinking of you. Better yet, if they think you are the crazy mom of the child with special needs, who never goes home or shuts her mouth, that’s good. The squeakiest wheel gets all the grease.
8. Ask for What You Want
Do not be afraid to ask for what you think is best for your child, even if it conflicts with a professional’s suggestion. If you think your child needs more speech therapy, ask for it. Call an IEP (Individual Education Plan) meeting and express your concern. The worst outcome is that you don’t get what you want. Even if that occurs, you’ve demonstrated that you’re an engaged and thoughtful parent committed to the child’s best interests.
It’s very important that you are seen in all the circles where your child is being serviced. Let his doctors see and hear you. Let the teachers and school administrators see you at meetings and school events, and hear from you via email. Participate in events that aren’t just for children with special needs, but other events as well. Think of yourself as someone who’s running for office.
10. Bring Your Backup
Ask family members and friends to accompany you to appointments, meetings and events. They don’t have to participate; but if they feel comfortable speaking, they can ask a question or two as well. It shows that you have support and a community behind you—you are a force (a kind, thoughtful, and polite force, but a force nonetheless) to be reckoned with.