When our children are young, one of our biggest jobs is to advocate for them. And for those with disabilities, that takes the form of fighting with health insurance companies to get the therapy he needs or working with the school system to make sure she is in a setting that works for her. We become warriors on behalf of our kids. As they get older, though, it’s important for them to take on some of that responsibility.
“I’m not going to always be here,” said Sharon Fuentes, a blogger in Northern Virginia and the mom of a boy with Asperger syndrome. “My main goal in life, for any child, is to raise an independent, responsible adult who is able to function in the world and be able to contribute to society. We all have to advocate for ourselves. The reality is that with special needs kids, if they were able to learn these skills just by watching, they would. But they can’t, so we have to teach them.”
So what steps should parents take? “First, the child needs to be aware,” said Fuentes, co-author of “The Don’t Freak Out Guide to Parenting Kids with Asperger’s.” “You have to be aware of your own strengths, your own needs. You can’t advocate for yourself until you know what it is that you need.”
Once they’re armed with information about their specific challenges, they can advocate for themselves. But often, children with autism lack the ability to filter how much they share, and with whom. So in addition to teaching them how to speak up for themselves, it’s important to make sure they know there are times that they might want to keep information private, said Jim Ball, the executive chairman for the national board of the Autism Society.
“They are so trusting of people and so open and honest about who they are, which is one of qualities I love most about them, that they express it and tell everyone,” Ball said. “They are like that with other things, like sexuality, so you have to teach them that there is a time and place to discuss it. It’s the same with self-advocacy.”
Here are suggestions from Ball and Fuentes on teaching your child when and how to disclose a diagnosis, and how to express what she needs:
- Make sure they understand the difference between needs and preferences. Before she could teach her son, Jay (she uses an alias for him on her blog to protect his privacy, and we are using that name here) to go to teachers or administrators and ask for what he needed, Fuentes had to teach him that there is a difference between things he absolutely must have and things he would like to have. For Fuentes, that meant explaining to Jay, who is 13, that sitting close to the teacher in class is a preference, but having a quiet space to retreat and collect himself when he gets overwhelmed is a need.
- Have older children write a note to their teachers. Fuentes got a template from imdetermined.org before the school year started and had Jay use it to write a letter to each of his teachers. The letter outlined who he is, what he likes and dislikes, what stresses him out and what he needs to succeed. “It was not only a great self-awareness exercise for him, but it’s a great resource for teachers to have right away,” said Fuentes, adding that it can give teachers a quick summary of the student before they’ve had time to sit down and read an entire Individualized Education Plan (IEP). Jay handed the notes to the teachers himself before the school year started. “It was huge for teachers to see that,” said Fuentes. “It wasn’t just the mom saying this is what my son needs. Now all of a sudden it was the student coming to the teachers and telling them ‘This is what I need to be successful.'”
- Include the child in IEP meetings. Jay has begun sitting in for parts of his IEP meetings, and Fuentes said it has helped him understand how things work and why he gets certain services or accommodations, but not others. It also allows him to voice concerns about situations that may be problematic for him. He was worried about going to a built-in resource block next year that would be held in the auditorium, Fuentes said, because being in such a large room with a lot of other students would be stressful. So the IEP team was able to place him in a smaller classroom. Not every child has the language skills to verbalize their needs as well as Jay does, but Fuentes said even a simple yes and no, verbally, through gestures or with an assistive communication device, and boost a child’s sense of self-esteem.
“Just asserting what they want is important for anyone to be able to have a sense of self-worth, and a sense of confidence that you can share what you want and people are listening to you,” Fuentes said.
- Talk about “safe people” when it comes to sharing information. The child needs to know who she can go to if she’s having a problem. Talk to her about when to share her needs or disclose her diagnosis, Fuentes said. Otherwise they might start telling other students, unnecessarily, and bullies could use the information against them. “It’s a very fine line,” Fuentes said. “I don’t ever want him to feel bad about it. This is part of who he is. But I don’t walk around letting everyone know what my religion or sexual preference is. It’s the same thing. We’re trying to teach him the parameters.”
- Turn to a book. Ball likes “Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum,” edited by Stephen Shore. Ball said it’s great for helping people get a grip on when to tell people about their diagnosis, and when to keep the information private. The book has contributions from adults who have autism, including a preface by autism activist, Temple Grandin. It uses a system of rules to teach people how to determine what information to share, and when.
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