Recently I met a frazzled mom at a conference about special education. “I’m so worried about my 16-year old daughter,” she confided. “She is defiant, hates school and won’t let the teachers help her. She is really struggling.” As she went on literally wringing her hands, I finally had to ask her, “Does your daughter understand her disability? Does she know she has one? Does she know how to manage it?”
The mom stumbled over her words as she told me that she had “sort of talked to her about it in elementary school” but it quickly became clear to both of us that her daughter did not really know she had a disability. She was acting out because she thought she was dumb, “a loser” — and that she was a failure. And here was mom, trying to get ideas and help so she could advocate for her. I put my hand over hers and said, “How can you expect your daughter to rise above her disability if she doesn’t even know she has one? How can you start to work with her to make things work better for her?”
This may seem like an exception, this story of a teenager with a significant learning disability who doesn’t know she has one, but sadly, it’s not. As a family advocate in our school system, I worked with a family after the 7th grade teacher told their son that he had learning disabilities. It was the first time he had heard this from anyone and he freaked out. It took over a year for him to recover from the trauma of finding out he had a disability.
While these stories illustrate why it’s important to inform our kids and not ‘protect’ them by withholding vital information, there is an even bigger reason to learn to advocate with your children. It’s a simple equation, really: If we want and expect our sons and daughters to be self-determined adults, we have to teach them how to advocate for themselves. And in order to advocate for themselves, they have to know their strengths and weaknesses, how they learn, what they need to learn and how to engage with others. And if they have a disability, I believe they need to know what it is and how to manage it.
Learning to advocate with your child requires compassionate diligence, accurate information and kind flexibility. It requires that parents understand their child’s strengths, learning style, needs, and interests along with their disability. It requires ongoing, age-appropriate conversations and clear and realistic expectations. Teaching your child about their AD/HD or learning disability or autism has to be balanced with not allowing them to use is as an excuse.
A great example of a strong self-advocate is the professor, author, speaker and inventor Temple Grandin. Temple understands how autism affects her in every way. She knows what it makes difficult for her and what the gifts of having autism mean to her. She speaks eloquently about what it was like to be a child who thought in pictures and not words and how she learned to put words to her pictures so she could function in society. Ms. Grandin is a self-determined adult. She has made her dreams come true. And her mother was by her side advocating with her, not just for her.
I understand why many parents don’t tell their children about their disabilities; they are trying to protect them. But the kids know. Withholding information about who they are and how they learn means they will likely internalize it and feel badly about themselves. They might think, like the 7th grade boy did, that if no one is talking with them about it, then it must be really bad and they must be really broken. Kids process very differently from adults and often blame themselves for not being good enough.
When you see it from their perspective, you can see what you need to do differently. Talk to your kids about their challenges just like you talk to them about how tall they are or the color of their eyes. It’s just part of them, and does not define them. Humans show a wide range of abilities — you and your child are somewhere on that continuum. Normalizing differences with honesty, support and love will help your child reach their own dreams. Advocate with your child and watch them blossom.
EP Readers: What do you think? Should you tell your child about their diagnosis? If you did so, what did you say– and how did your child take it? If not, why did you decide not to do so?
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Anna Stewart is a family advocate, writer, speaker, facilitator and single mother of 3 unique kids. She is passionate about helping families learn to advocate WITH their children and teens and supporting those with AD/HD. Anna is the author of School Support for Students with AD/HD.
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Thanks for the great clarity of the power of putting our children INTO the mix, into the very conversation that helps direct their lives. I believe deeply in the power and importance of IEPs.
I think there is often a hesitation to have our kids know their own specialties because of our own prejudices, perceived loss or injustices.
It is all in our own minds, how we frame our lives and our empowerment.
The earlier we empower our children from their own standpoint, their own sense of self - the earlier we change the world for us all.
Wow, I love all the great comments. I see a thread from all of you that in order to expect our kids to accept their differences (not always a true disability) we as parents and family members also have to accept that truth. I find that is comes in waves, sometimes the reality that their path is much different than their peers and/or siblings comes crashing down on me. Other times, the waters are calm and we focus on the normal, typical, everyday-ness of our kids lives. They are our kids first.
It's so fun to be able to talk to my readers- thank you for sharing your wisdom and worries!
I couldn't agree more with this article-from a different perspective, entirely. I have a dear friend who suffered for years from AD/HD, and her parents did everything imaginable to "explain it away"-to her, to the relatives, etc. She was denied support throughout her teen years, and has, as a result, spent many years trying to overcome a plethora of self-worth issues stemming from thinking she was somehow "slow" and "learning challenged".
I cannot help but wonder what kind of life she would have enjoyed, had her parents read an article like yours. If it saves but one child from the life she has had to endure because of ignorance, you will have more than deserved a hearty "well done"!
Hi - A friend shared this with me. I have a child and was wondering what I should do.... telling her about a disorder or not... we just weren't sure, or even who to ask about it.
Your article made sense - great guide for my heart and head. thanks so much. You gained a reader. Do you consult or is there a way to help find a good counselor that would help us as a family? It is all so new This is a great website. Thanks EMPOWERING PARENTS I even like the name!
Thanks for this discussion. Candor about diagnosis and deficits is important.
However, I think its crucial to notice that: 1.) Our culture tends to over-focus on deficits, resulting in isolation, and, 2.) Gift-focused connecting and inclusion, led by people with disabled family members, is an important grassroots movement to counter balance this over-done strength.
Anna - Temple Grandin is a hero(ine) of mine! I appreciate the depth of your voice that you would reference her. There is a really terrific biography on Netflix!Building a HUG machine to comfort herself brought me to tears! Maybe you can post movies on a blog like that. Good idea?
Now, more and more, people with disabilities are nurtured, highlighted on TV shows etc... what will it take for parents to not try to hide it away or delay the conversation which should be one of empowerment and really, even, excitement for a new pathway, a new way to be.
Share it with your child as a powerful positive force! it is your job, as the grownup, to know how to navigate for them so they can see navigation is joyful and easy and their birthright!
Thanks for the article.
Dear Anna - You are refreshing to me, as a single Dad. I have been so alone, on my own, talking to my son about his diagnosis (AD/HD) and I was really ridiculed because friends (single dads have TOO MANY "FRIENDS" GIVING ADVICE)the other mothers, were basically saying that I was causing him strain and feeling different... and that putting a focus on it, I was hurting his social status somehow, his self confidence - but I found your facebook page too - and read your review of that test. We took it JUST like you did, because it showed him (he is 15) about his own strengths and weakenesses too.
So as he is empowered, our walls come down, Our trust goes up. Our understanding is gained, and we work together to find ways for it to be COOL.For both of us.
I liked your website. It was hard to find on your facebook page. Advocacy WITH.... sounds good to me. JJ (Johnny Junior says so too!)
Thanks from a single dad.
I agree that it is very important for parents to help children understand their strengths and challenges, and any diagnoses that have been given. This can start even at a young age with simple words and explanations. I have seen similar situations to what you described, where a child finds out about their diagnosis or "issues" via a teacher, peer, or someone else's parent. With holding this information from a child ends up doing more harm than good. Thanks for spotlighting this important topic!
I have a 7 year old boy diagnosed with asd and adhd, he has been made aware of his diagnoses and what it means since diagnoses. I am very proud of my son and want him to be proud of who he is, sure he has autism/ adhd but thats just a part of him. It helps him understand why he thinks and acts differently to his peers and siblings. It helps him identify how he can use his uniqueness to his advantage and how to cope with those things that he finds challenging everyday.
I do agree that we should tell our children about their learning difficulties or differences, whatever that may be, as they simply have a right to know. They need to feel that its ok to be different and we are proud and supportive parents of who they are....