The following post was written especially for Squag!
What Is Squag?
“SquagTM [skwag] is a curated, online experience for kids on the autism spectrum (and their siblings!) that allows them to initiate, explore, and self-discover. Our SquagpadsTM give parents an opportunity to learn about their kids and give kids a new way to learn about themselves, making screen time more meaningful.”
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The Burning Question
The question I am asked time and again: At what age do we talk to our kids about disabilities? And more specifically: At what age do we tell our children they are Autistic? For me the answer to either or both is…
as soon as possible.
Why wouldn’t we, unless we’re trying to keep something from them, which I talked about here.We want our children to know themselves, don’t we? And that’s not something that can start too soon. We begin teaching our children about themselves from the very beginning. We teach them about their bodies, we talk to them about eye and hair and skin color. We talk to them about family and friends, relationships, their feelings and emotions, so why not about their disabilities? They are a part of them.
If we want our kids to have a clear understanding about themselves we should tell them all about who they are, right?
Unless one considers disabilities something that should be hidden. We’ve talked about autism in our family since we realized our children (and I) were Autistic. As they’ve grown, we’ve also been met with auditory processing issues, physical disabilities, learning disabilities, Attention Deficit Disorder (ADD) and more. These things need to be addressed. It’s important to me that my daughter know that she has difficulty in school, not because she’s “dumb,” which is what she thought very early on, but because her “brain works differently,” which is what she told a classmate more recently…
Yessss! She nailed it!!
Early Disabilities Education At Work
The other night we attended an ice cream social for Lexi’s, school, which was held at a local public playground. We’ve been going every year for about 9 years now, and it’s pretty much the same year in and year out: Parents and teachers talking, children running, swinging, climbing and shouting…
I find it a bit overstimulating, but the kids seem to like it.
After a couple of hours, as it began to grow dark, it was time to go. My kids seemed to have a good time and discussed animatedly where we could go for a late dinner. As we walked toward our truck, Lexi became quiet and hung back, taking my adult-sized hand in her tiny 8 year-old hand (I forget how small she is sometimes). She then asked me to walk with her so we could speak in private. So we slowed up letting the others walk ahead, and as I looked down at her I watched the tears begin to fall. Like me she has sensory integration impairments and is hypersensitive to most stimuli, and most likely an empath as well, so tears from her are not uncommon.
“What is it?” I ask, sure she is having a bit of a meltdown from all of the overstimulation from the evening.
*She shakes her head unable to speak.
“Would you like to tell me later?”
*She shakes her head again.
“When you’re ready to talk, just let me know.” This is usual for her as it takes time for her to process information and to make sense of most social situations.
“They laughed at Bas,” she says finally.
*I feel sick
“Because he couldn’t talk they laughed at him!”
*And the tears fall harder. I swallow mine because now is not the time to be hurt by ignorance and bullying and the unfairness, and the other stuff that can go along with being disabled.
“Who?” I asked.
“Two boys. I asked them how old they were and they said they were in the 4th grade (Lexi is in 3rd). And I told them ‘He’s Autistic and he can’t talk!’ And the one boy said ‘sorry’ but the other boy kept laughing, then they ran off.”
*And she cries some more then asks me not to say anything to the rest of the family. She has difficulty with her emotions and becomes overwhelmed easily, usually only sharing them with me.
“I won’t tell,” I promise.
A bit later as we sat down to dinner at the restaurant, a seafood place that has become a family favorite, Lexi, still unable to engage with the rest of the family asked me to share what had happened. So I did. And do you know what the first thing I heard was?
“Yea, I remember the first time that happened with me and Bas,” from my 14 year-old daughter, Bella.
I gulped the tears back on that one, too: “I remember the first time…” I’m tearing up now as I consider my three excellent kids. All three already advocating…
And I am speechless. And I am proud. And I am honored to be their Mom.
I’m thinking of a post I wrote quite some time ago, The Magic Number. And after re-reading that post, I was left with this…
Eight… The Magic Number is Eight
The Sooner The Better
And that’s why we talk about it early. Keep it simple at first. Conversations become more detailed and more questions will be asked as they get older, and these conversations should involve siblings, too! Until they’re able to advocate for themselves, their siblings are their strongest allies! Never underestimate the lessons kids learn from each other…
Even on a playground.
Self-perceptions begin to form at such a young age and if we don’t give our kids all the information because we think they’re too young, or that they won’t figure it out if we don’t tell them, then we’re doing them a disservice. They will find out if they haven’t already, and by not talking about it we run the risk of them trying to hide these things from us…
If we don’t talk openly with our kids, we run the risk of them feeling embarrassment or shame about a part of themselves, and it’s up to us as parents to do what we can to keep that from happening.
We have to learn to accept these things about our kids – their differences, it’s what makes them unique – and help them to love and accept themselves completely. Are there obstacles? Challenges? Holy cow, yes! And that’s why the conversations can’t start soon enough. Education is key, the more our kids know the better they are able to handle situations as they arise.
Advocacy In All Of Its Awesomeness
Eight? Isn’t that a bit young? I don’t like to think myself naïve, and I know I miss a lot of the social stuff, but eight? Really?! Ugh. I guess it’s not too young considering Bella was around that age when she first encountered prejudice against her little brother. So, how old was he? Bas is 11 now and still non-speaking. He’s never mentioned anything to me, but I have to wonder… What does he think?
What was going through his mind that evening when those boys were laughing at him?
Was he hurt? Did he care? Bas was not left out of the conversation (nothing about him without him). I talked to him that evening at bedtime. I told him those boys were wrong and that I was proud of him and his sister. He seemed happy as usual and not upset by any of it and I’ll take that as a positive, but right now I have no way of knowing for sure and I hate that. But there is one thing I do know, and more importantly that I know he knows:
Two times (at least) when kids were bullying him, laughing and making fun of him, his two sisters, whom he adores, stood up for him.
And they are wondrous and I am in awe of them, and do you know why? I never once asked or told either of them to do what they did. To advocate for their brother when others bullied him. They did that on their own.
They were both witness to ignorance and hate and they each made the choice to speak out.
Do I still feel that discussing autism as soon as possible is the right thing? Without question. Discussing disabilities shouldn’t be a negative thing and if you think it is, please check out my blogroll and read about…
Autism Acceptance and Disability Pride.
I also wrote a teaser of sorts for an excellent book on the subject of disability pride Criptiques , which is a collection of essays by disabled writers. And while we’re on the topic, take the time to learn about the Social Model of Disability and why it’s well past time it replace the Medical Model of Disability with its outdated notions and disrespectful views of disabled people.
Advocacy is not always a conscious decision. Personally, I was advocating for my kids for years and had no idea, I was just doing what was necessary to help them be successful. And I’ve encountered the same in others. I’ve had people tell me they choose not to advocate, that they just can’t do it, and didn’t realize that any time they had asked for the smallest accommodation for themselves or someone else, or maybe told a couple of bullies that they need to lay off, that they have in fact advocated. You don’t have to protest, or march, or blog, or testify at the capitol (but it’s AWESOME if you can) to advocate. You could do something as seemingly small as educating two little boys on a playground like my 8 year-old daughter did…
. . . And the ripples of your advocacy could be felt by thousands.