Monday, September 9, 2019

Teaching Kids About Neurodiversity and Self-Advocacy

Image is of almost-13-year old Snugglebug, a female person with dark hair and green eyes, with her mother, a female person with pink hair and green eyes. They are both smiling at the camera.
Image is of almost-13-year old Snugglebug, a female person with dark hair and green eyes, with her mother, a female person with pink hair and green eyes. They are both smiling at the camera.

Update 9/10/19:

I didn't expect for this post to be so widely-read, but I am glad that it has been, and continues to be.

I would be remiss if I didn't point out the ways folks can promote understanding and acceptance of neurodiversity in their own communities.

The first thing, obviously, is to talk to your children. Make conversations about neurodiversity part of routine discussions in your home.

Another powerful thing you can do is to support neurodiversity libraries in your area -- and beyond.

If you're so inclined, please head to Facebook to "like" my brand-new neurodiversity library, North Central Washington Library for Education on NeuroDiversity (NCW LEND), and -- if you're able -- please consider sponsoring a book from our library wishlist on Amazon. Thank you!


My Snugglebug will be 13 in a few short days.

I love this age -- this stretching of wings, testing of boundaries, questioning of All The Things. It's pretty amazing to see a once-child morphing into an almost-adult, and begin to embrace their passions.

Snugglebug is simultaneously blessed and burdened by an abundance of compassion, empathy, and understanding of social justice.

I say "blessed," because it is a notable gift to instinctively see all people as worthy of dignity and respect.

I say "burdened," because... Because sometimes, the world is a pretty overwhelming place for those who are attuned to the mistreatment of others. Once injustice is seen, it can't be unseen, and when it's everywhere... it can make a person begin to lose hope.

That being said, Snugglebug is a fierce self-advocate, and an advocate for others.

This space -- this time of life -- she's in is simultaneously beautiful, and raw.

She's full of energy, right now, and tackling ableism every time I turn around. She knocks down one challenge, and is immediately ready for the next. I have to remind her sometimes that a little bit of down time for self-care and spiritual nourishment is not only okay, but necessary.

Snugglebug is neurodivergent. That is, her neurology falls outside the societal expectation of "normal." She has an Individualized Education Program (IEP) at school, which provides reasonable accommodations for her to access and navigate her education.

We've made a point of including her in IEP meetings and discussions -- even before she felt ready to significantly contribute her own ideas. This was, and is, important to us, because:

  • We presume competence in our children.
  • We want her to see advocacy in action.
  • We want her to see her parents and others standing up for her, and that she is worth advocating for.
  • We want to model to her effective language for self-advocacy, when she's ready to use it.
  • We want her to have a voice in plans that involve her.
  • We value her input, when it comes to effective strategies and accommodations for her. She is the authority on her own lived experience.
  • We want her to hear and know what is in her plan, so she can self-advocate when it's not being followed.
You see, I am NOT my daughter's voice, nor is any other parent the voice of their child.

Our job, as parents, is to help cultivate confidence in our children, and to amplify their voices until they're ready to independently assert themselves... but never to speak FOR them.

We talk a lot about neurodiversity in our home. 

We talk about how differences among brains and development are normal within nature, and among humans. We talk about how some people are good at certain things, but might need support to do other things. We talk about how everyone -- no matter how their brain works -- is worthy of respect and support.

And, we talk about ways to stand up for ourselves and others.

As a result, here are a few actions which Snugglebug has independently taken in the last few weeks:

  • When a speech therapist was telling another child not to "squawk" during instructional time, Snugglebug was able to identify to the therapist that the child was vocally stimming, and that some people listen better when they stim. She stood up for the other child, and reminded the therapist that autistic people should never be forced to stifle or abstain from stimming.

  • When a new teacher, on the first day of school, emphasized to the class the importance of maintaining eye contact when the teacher is speaking, Snugglebug was able to write a thoughtful, respectful letter to the teacher, reminding her that eye contact is difficult or even painful for some people -- including Snugglebug -- and that her teacher's words made her feel unaccepted, misunderstood, and unworthy. The teacher was receptive, and thanked Snugglebug for broadening her understanding of the students in her care.

  • When a different teacher refused to allow Snugglebug an accommodation that is in her IEP, Snugglebug was able to correctly identify that she was, by law, allowed the supportive accommodation. She had to do so in front of her entire class, because the teacher had denied the accommodation, in front of everyone. She was made to go to the office until the vice principal confirmed to the teacher that the accommodation was in her IEP and she should be readmitted to class... but she didn't give up. She respectfully stood her ground, because she knew her rights.
(I've shared these examples with Snugglebug's permission.)

It's important to note they most likely never would have happened if we didn't talk, as a family, about neurodiversity.

She wouldn't have had the words to speak about stimming, and eye contact, if we hadn't discussed, as a family, that some people have different needs than others.

They most likely never would have happened if we had shielded our child from her diagnoses, because we "don't want to stigmatize her," or "don't want her to be defined by her diagnosis," or "don't want to label her."

She understands who she is, how her brain works, and what will best help her to be successful. She's not floundering about, in an educational system designed largely for neurotypical students, without proper supports and access.

They mostly likely never would have happened if we didn't presume competence, and allow her to be included in conversations about which supports are most effective for her. 

She knew that provision was in her IEP because she, herself, had asked for it.

"Mom, why do I have to be the one to stand up for what's right?" she asked me, the other night. "Why don't people just naturally do the right thing?"

There it is, I thought. There are the first signs of weariness. The first hints of recognition of the enormity of the fight. The first bits of realization creeping in, indicating that the fight for justice and equality is never over.

And my heart broke a little bit.

She'll be 13 in a few days.

Thirteen is far too young an age for human beings to become cynical. 

It is far too young an age to feel the weight of injustice crushing down upon those still-developing shoulders.

I have to believe there is hope. And I need my daughter to believe it, too.

"Because you get it, sweetie. You understand things that a lot of other people don't -- like that everyone deserves support, and respect, and dignity. You understand that true inclusion benefits everyone. You understand that injustice is all around, and that even though some people mean well, their actions or beliefs are often hurting others.

And, because you understand these things, you are in a position to change them, with your voice.

You are in a position to set an example for those who don't know they can stand up for themselves. 

When you stood in that classroom and said to that teacher, 'I believe I am allowed to do this, because it is in my IEP. Could you please check?' you showed other students in your class that it's okay to ask for and receive accommodations. You showed them it is okay to make sure that everyone has access to education. 

Maybe there are some students in there who have needed to self-advocate, but didn't know they could, or didn't know how.

And now, they've seen it in action. They know how it works.

And do you think that teacher will ever send another student to the office, instead of providing the accommodation the student has asked for?

You taught the students, AND the teacher.

And you taught the teacher who was insisting on eye contact. You did it in a respectful way, and helped her understand that not everyone has the same capacity or need for eye contact. She probably won't place that same emphasis on eye contact, and alienate some students, again, next year, right?

So things will be a little bit smoother for the next students who come along.

Every time you stand up for yourself, and others, there is change. It might be a little bit hard to see, and it might feel tiny, but this...

This, honey, is how we change the world.

One small, or medium, or great big act at a time.

And I want you to know that you have ZERO obligation to continue to do this work, if you don't want to, or if it gets too hard, or if you need a break, or it takes a heavy toll on you.

I will ALWAYS support you, no matter what."

She was silent for a few moments. I thought I'd overwhelmed her, or scared her, or upset her in some way.

But then...

But then, she said, "I think I'm okay. I like using my voice. I think I'm going to keep doing it. And the more people that learn, the more people there will be to help teach others, right?"

There, in that moment, I saw a glimpse of the adult she's becoming, and of the world she is daring to help create.

In that moment, I felt something that's hard to feel, some days.

I felt HOPE.

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  1. This made me cry, with sadness, and hope. I hope my children can be this amazing one day.

    1. ShawnaD, I believe every child has "amazingness" within them, just as every adult does. I'm sure your children are no different.

      Again, I presume competence in my children, so I talk to them about neurodiversity, self-advocacy, and advocacy for others, all the time.

      When I'm around other children, like my kids' friends, I talk about inclusion and neurodiversity, too, in small ways, when it's natural. It should be completely normal for children to see and share space with disabled folks.

      The routine messaging is important, because when we make it a commonplace thing to stand up for oneself and others in discussion, it translates well into the rest of life.

      I don't know the ages of your children, but I might suggest conversations that focus on things like, "You are wicked good at __________, but because we are all different, and sometimes need help, you sometimes need help with ___________. It's okay to ask for that help. Mom sometimes needs help with __________. It's also okay to ask for help for others, when you see them struggling."

      Best of luck to you, and your kiddos! <3

  2. I love your post - but the part about not being our child’s voice - I beg to differ. My aspie daughter has her own voice, and is now really starting to use it as she becom s a young adult which I so love. My son however has asd and learning disabilities and other health issues - he has very limited language. I have to be his voice. Although i try daily to devise ways in which to support him to make the simple choices he is able to, I will always have to be his voice and advocate as best I can for him. I’m under no illusions - I’m well aware I won’t slays get it right for him, but I will always try whilst there is breath in my body. Which is why I write this reply now - to speak for him and others with similar needs. To remind people that even with limited or no speech, they very much matter too 😊


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