As parents, we are all aware of the need to advocate for our children. But, when you have a special needs child, the stakes seem that much higher considering the assistance you will inevitably need to face the extra challenges. Special education services and resources can be limited and in order to access them, as well as the obscene amount of finances they often demand, it will require tenacity not to mention information and skills.
My determination to see my daughter’s needs met collided hard with the reality of a broken system. Files get lost, phone calls are not returned, valid needs get denied, and red tape is everywhere. In response to my expressed frustration, people often told me, “The squeaky wheel gets heard first.” However, what I gradually learned is that the key to being heard is not being a loud, obnoxious, and over-controlling parent. To be an effective and savvy advocate, perseverance and diligence are vital; but, the perpetual anger is not helpful. Burning bridges you might need again later is not wise. One must learn instead how to work through conflict to make a child’s needs known. And, I discovered that people are more willing to work for you in the confines of the system if you engage in discussion honorably and recognize the challenges they often face in their position. Advocacy is not about bucking systems only; but, learning how to knowledgeably work within them in hopes of reaching positive solutions.
Consider some of these suggestions to advocate for your child from a more empowered position:
1. Take a deep breath and stay calm. Make a conscious choice to stay civil from the very beginning.
2. Apply yourself. The effort and energy you save by keeping calm, you can transfer to gaining knowledge. I recognize now that the times I felt the most angry or frustrated was when I felt in the dark about circumstances regarding our daughter. As a parent it is terrifying to watch other people make critical decisions about your child that you barely understand. Build yourself a platform of new confidence by learning how to speak and engage knowledgeably with professionals about the matters vital to your child’s thriving.
3. Learn about your child’s rights and know the law, so your requests or challenges to the decisions regarding services will have a valid foundation of support.
4. Attend meetings regularly and be assertive enough to call for them when necessary. Consider bringing someone along to add to your testimony, take notes, or offer you moral support until you feel strong enough to do it on your own.
5. Show confidence even when asking questions. Don’t feel you have to apologize for not knowing all the answers. You need to make decisions from an educated position and you can only do that by learning from the professionals addressing your child’s needs. If need be, stop people in mid-sentence and ask for clarification to better understand. This will actually show meaningful engagement and receive respect from those who should essentially be there to help and not oppose.
6. Learn the lingo you find yourself immersed in. Whether it be medical, educational or other terms perpetually abbreviated, ask for translation when needed. Then, make the effort to learn the new language and use it to your advantage.
7. Keep an organized paper trail, including copies of requests with the date you sent them. It might also be helpful to keep a log of whom you spoke to and when.
8. Don’t feel pressured. Remember that professionals involved are there to help, even if you disagree with them. Ultimately, you are in the driver’s seat. So, while it is important to be receptive to the thoughts of others concerning your child, don’t agree to something you think goes against what is best for him/her.
9. Identify the people who can help you help your child. Building relationships with such key individuals can uncover unknown resources or open up lines of vital communication.
10. Find organizations that reflect your cause and join. This will allow you to increase not only your own voice but that of a whole community of people on the same path. There is strength in numbers and maybe even answers already available if you link with those who are just a step ahead.
You’ll also like 15 Ways to Care for Yourself When You Have a Child with Special Needs, Applying Grace and Understanding in the World of Autism, 7 Ways to Find the Right School for Your Special Needs Child, 16 Recommended Games for Special Needs Children, One Mother’s Story of Down Syndrome and Joy, and 12 Tips on Holding Your Ground with Grit and Grace