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How to advocate with (not just for) your child with special needs
We Solo Moms are very skilled at advocating for our kids. Many of us raising kids with special needs have years of experience talking to medical professionals, insisting on getting evaluations done, negotiating with insurance companies, interviewing tutors, and advocating for support at school.
When our kids are little, we have to do all the advocating. We become more skilled in our new roles (as they change over time) and continue to speak for our kids—even when they are old enough to speak for themselves.
Dealing with various systems of service—education, medical, and legal—reinforce our roles as protective parents, especially when our minor children don’t have many rights. Then, suddenly, at age 18, they do. But what if they don’t have the skills, understanding, or know-how to advocate for themselves?
Public education will have some expectations that our kids learn to advocate for themselves but lacks any approach to teaching these skills. Too often the message is, “You need to figure this out, so do it.”
Self-advocacy is a survival skill. It is more likely that people will experience greater success and life satisfaction if they know how to advocate on their own behalf. Students with learning disabilities continue to graduate at much lower rates, and fewer go on to college than students without learning challenges. Part of the reason is they rarely learn to self-advocate.
Learning to self-advocate is a four-step process:
- Awareness: You need to know who you are as a learner and a person.
- Acceptance: You need to know what you need to optimize your learning.
- Advocacy: You need to know how to get what you need.
- Determination: You need to know what you want and how to get it to make your dreams come true.
For Solo Moms who are learning to move from advocating for our kids to advocating with our kids, there is a lot we can do starting at the elementary ages.
Start with conversations about other people with disabilities, and talk about what is hard for them to do and also about what you might have in common with them. Using TV shows (Sesame Street), movies (Finding Nemo), or books (My Brother Charlie [Scholastic Press, 2010]), practice using person-first language (he is a child with attention deficit hyperactivity disorder, autism, or Down syndrome) and accurate descriptors (he uses a wheelchair, a cane, or an iPad).
Then talk about the people at school who help your child; use their correct titles and explain their roles (special-education teacher, speech therapist, para-educator, etc.). Doing so can lead to a discussion about Individualized Education Program (IEP) meetings and paperwork. I started with showing my daughter her progress reports from the special-education teacher to make the introduction to the IEP based on her strengths. Over a few years, I shared more of the IEP and had her start coming to meetings. She was introduced to everyone, then she and I shared a list of what she liked and didn’t like about school. The first list was shared in fifth grade. Now she writes about it herself.
As kids go on to middle and high school, try to keep the conversations about disabilities as natural and easy as possible. Our kids need to know what the words “special needs,” “learning disabilities,” and even the “R-word” are by the time they start middle school. You can be sure that the other kids will know the words and use them.
By the time your child is 14, she should be attending at least half of the IEP meetings, and the adults should start talking directly to her, especially about her strengths and skills. Your teen should know what her accommodations are and carry a copy of them in her binder in case a teacher pushes back.
Solo Moms play a big role in this area. Often it’s the opposite of what we think it is. We have to stop doing too much for our kids and, instead, give them more choices and allow them room for taking calculated risks and time to practice learning new skills. It’s the path of making mistakes and picking ourselves back up that teaches us so much about ourselves.
The path to advocating with and not just for our kids also means we need to be able to support our kids even when they advocate for something we don’t agree with. If we edit, dismiss, or challenge their new attempts to speak up for themselves, they may stop trying. And if they stop with us, they may never try with their teachers, coaches, or other adults.
Here are a few small ways to begin the path to advocating with your child:
- Let him order at restaurants, and don’t step in to help him.
- When she complains about something, instead of “fixing” it, ask what she wants to do about it.
- In the early stages, you can help him craft a list of solutions but, over time, ask him to make the list.
- As you talk about her disability, ask her what language she prefers people use when talking about it.
- Middle school and high school students should learn to email their teachers with questions. Practice what to do if the teacher doesn’t respond in the way they hoped.
- High school students should understand their accommodations. If they need help, ask them to meet with their case manager to go over how those accommodations look in class.
- Practice not rescuing your child when he forgets his lunch or homework. Instead, problem solve other solutions.
- Take time to examine your own beliefs, perceptions, and feelings about your child’s special needs. Our kids know what we really feel.
- Share your own dreams with your kids as a way to encourage them to dream big, too!
- Remind your kids often that you believe in them, that you “get” them, and that you celebrate their uniqueness.
Enjoy the path of learning to advocate with your beautiful children!
Join our confidential community of Sisters to connect with other Solo Moms of children with special needs.
Anna Stewart is ESME’s Kids with Special Needs Resource Guide and the Solo Mom of a daughter and two sons on the brink of adulthood. She’s a champion for the rights of people living with disabilities and those who love them.
Please feel free to contact us with any comments or questions.