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Why do you post conversations?

I don’t prioritize full length blogs the way that I would love to, but I do post snippets and conversations of our life over at Facebook at all the time.

Why?

Because the internet is still filled with stories about how disability = unable, how “non-verbal” = nothing to say… One such story posted on HONY today, a story I tried to give the benefit of the doubt when a friend messaged me about it. Except that she was right, and I was wrong. We cannot give those stories the benefit of the doubt. We don’t have the privilege, not when the mainstream story is still that reading books and learning is a pipe dream for the majority of our kids.

I share these conversations because I want to show the world — and many parents — how much their child can do, right now, as their child is. We didn’t “uncover” Diva. She wasn’t “hidden inside”. She is just herself. She has multiple disabilities. She learns differently. She is impacted both by her disability and by the way society treats her. One of those things can be changed.

Diva has conversations with us using single words and telegraphic speech. She uses signs, body language, AAC, and vocalizations. Sometimes she goes all day only talking about Diego & The Wolf Pup Rescue. Sometimes we go a long time with her ignoring us and hanging out in her room. All of those conversations can — and should — be respected and valued just as much as any conversation with past tense and contractions. Her conversations are shared because you need to know that your child can do this too.

Little Man sees the world through a completely different lens than the neurotypical child. He struggles with the gray areas of thinking and problem-solving, but he also is creative. He struggles with abstraction and social norms, but he also has a big heart for friendship and kindness. He struggles to understand jokes, but he also loves to be silly as he recently told his aunt. None of these things are not mutually exclusive. His conversations are shared because you need to know your child can do this too.

I don’t want their lives to be inspiration porn. I don’t want people to read a conversation and think that Diva has “overcome”. Overcoming is crap. The only thing she has to overcome is this world’ stupid projections on her, and I don’t think that’s fair. I’d rather tear those projections down than force her to fight against them. My biggest hope for each of my children’s lives is simply that they will be seen and loved without feeling a need for pretense or hiding. Isn’t that what we want for every child?

The true story is that there is value in their way of thinking, being, and interacting in the world, without a need to become more neurotypical. In fact, I don’t want them to be more neurotypical. Their value is being who they are as they are, just as my value or yours is made. And so I write. I share the everyday moments of our lives. And I hope that every child with a disability will know the same things — that their voice is heard and that they are seen.

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Five for Friday: 5 Favorite Blogs

1. Low Functioning? High Functioning? What Are We Really Saying?

“‘Low functioning”‘tells me nothing and gives me no clues EXCEPT to tell me about the adults who work with the child. When I read or am told that this child is “low functioning” it tells me right away that the adults in this child’s life have not done enough problem solving to discover what supports the child needs in order for him or her to be successful.”

2. A Thought Experiment

“Let’s do a thought experiment. You’ll come along for this journey with me won’t you?

Imagine that your classroom receives a new student. She’s 7 and has been home-schooled until now, no formal education at all.  Her parents report that she developed normally until around 20 months. At which time she became very ill and developed multiple disabilities. The audiologist reports that she has no hearing (based on an evoked auditory potential test done under sedation) and the neurologist has provided a report saying she will not recover vision and that she is untestable using standard measures. Additionally, she has significant behavioral challenges and she appears to have a cognitive or intellectual disability.”

3. Would You Accept this Behavior Towards a Non-Autistic Child?

Heidi, of Speak for Yourself, writes about the ways that teaching approaches are often dramatically different for children with autism or multiple disabilities than for children who use speech. She points out how these differences are not supporting our children to become autonomous communicators, and things we should think about when planning instruction, selecting therapies, and working with teams.

4. Welcome to the Club

This is one of the only posts to newly diagnosed families that I’ve ever seen which both acknowledges the journey ahead AND values the autistic child’s life & personality as completely worthy. It’s a really beautiful balance.

5. Do You Believe In Your Children?

“A child — any child, not just an Autistic one — is a work in progress. By this I don’t mean that they are a someday-person. Every child is real and authentic and fully human in this moment, perfect just as they are. But they are also a sort of seed of the adult they will hopefully grow to become.”

This is a great blog for reading about the experience of being autistic by autistic adults. I go here first whenever possible.

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How we talk about growth

I read lots of comments online about how children are doing making progress or doing better because they no longer need some form of assistive technology that they used to use — a wheelchair, a gait trainer, a speech-generating device, a picture schedule, and so on. And I wonder — isn’t there a different way to talk about this? Do we understand what our language is saying?

At first glance, it doesn’t seem harmful. It seems pretty factual: my child used to do this and now they do this. Listen again. It’s in the implications that we bring to our conversation. We celebrate every step closer to “normal”, that what “typical people do” becomes our yardstick for measurement. What are we saying about the children who still use AAC? Who still need picture schedules, lists, gait trainers, and AFOs? Is there some sliding scale where the less technology needed is better?

I’ve been thinking a lot about the many ways that we reinforce the culture of ABILITY! We prize neurotypical friends over friends with disabilities. We value pretending to play house over parking our cars in (beautiful) patterns and lines. We value breadth of knowledge over depth, and block our kids from special interests and passions. We demand that they conform to the way we teach, the way we live, the way we interact. We mourn their inability to engage on the playground in the ways that we did when we were growing up. We use the word progress, which almost always infers that what we left behind is less-than. Technology progress. Human rights progress. Always moving forward, always looking down on what we left. Do we want to look down on our children? Who they were, who they are, and their unique journey?

I don’t want to measure my daughter against the mainstream. Can’t we value friendship and joy and presence, all on their own, regardless of external measurements? Can’t we ask this child — or use their behaviors to understand — about their happiness, their dreams, their vision? Could they be alone on the playground and happy? Don’t some of us recharge best when we have time by ourselves? Could they learn creativity and problem-solving and engagement in those striking grids of trains and animals? Does it have to be the way we’ve always done things? And aren’t there many ways to achieve those outcomes, some involving technology and some not?

We are playing with different ways of talking. We haven’t perfected it. I am constantly becoming more aware of the ways my language insidiously supports everything I stand against. So I wonder — who is that needs to make progress? Is it our kids? Do they need to leave themselves behind? Or is it us?

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It’s her, but it’s also us.

I’m amazed by my girl Diva every day. I post a lot about her progress in various places around the web, and people inevitably write about how they don’t think that XYZ could do that. They talk about other kids and say, “like Diva before Diva had her talker”. They add a lot of “buts” or other conditions. “My kid is severe… My kid is developmentally… My kid is…”

Every time I’m reminded of what one of my role-models, Erin Sheldon, says about her daughter. Her daughter didn’t change. Everyone around her changed how they viewed her daughter.

Diva still has many disabilities. The list is long: microcephaly, occipital encephelocele, cortical vision impairment, nystagmus, strabismus, amblyopia, moderate intellectual disabilities, dysautonomia, cerebral palsy, hyperacusis, apraxia, post-traumatic stress disorder… Basically, learning can be complicated for her. For most of her life, these things were seen was barriers. She could not walk, or talk, or even see that well. She was stressed and crying much of the day. Her life was seen in this way: cannot, will not, too hard, too much, too… She was too “disabled” for a communication device, for a bike, for a gait trainer, for learning. She was trapped by the making of her own labels, with foster parents who scoffed at the concept of her listening to stories, with doctors who focused on how limited she would be and for how long (read: forever).

And then she came to us. I’ve been around too many people with disabilities, too many self-advocates, to fall for that list. I saw something different: a girl who was feisty, who was determined, who had this vastly unknown and untapped potential. We responded to her. We responded to her words, her actions, her body language. We created opportunities. We read books. We sang. We played iPad. We talked. We attributed meaning to everything. If Diva turned her head, we assumed that it was on purpose. If Diva said, “ba”, we assumed she was calling us. If Diva threw a ball, we assumed she wanted to play with us. We created a world that wanted her. We created a world that saw her. We created a world where she had hope, because her actions were changing things. We refused to be knowledge gatekeepers, to limit her skill or potential to what our imaginations held. We created opportunity.

Diva is blossoming. She uses a communication device that has well over a hundred words open. She is beginning to walk independently, a few steps here and there. She can manipulate the iPad to play her favorite games. She found words on her electronic word wall with only one or two models. She is beginning to pick up books and hand them to us. She dictates words to us for her journal and scrapbook. She tells us what is wrong. She can fill in the words to hundreds of songs, even when she hasn’t heard them in months.

But she still has lots of disabilities. She has all the same challenges. She’s the same child that couldn’t, wouldn’t, never… We just see her differently. We see her as capable, and we give her the chance. We didn’t wait for her vision to heal or for her to gain magical finger isolation skills. We knew that she had something to say, and so we created a communication device for her. We made sure it met her needs — her vision, her motor, her language needs. We modeled. We created opportunity. And she blossomed. It keeps happening, again and again. It doesn’t matter how many days it takes, how many years it takes before… Walking, talking, reading, writing, etc… It doesn’t matter. We won’t stop giving her chances. We won’t stop seeing her.

That’s what I wish for every child with significant disabilities. I wish for them opportunity. I wish for them hope. I wish that people would stop thinking that educating and trying is pointless, just because of a bunch of labels. I wish we would stop measuring them against the typical, the norm, the mainstream, and start just seeing them, as they are. There’s this whole population of children and adults whose talents and gifts are being wasted on the world. A whole population. And we need them. We really, really do.

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On opportunity and risk…

I’ve been in a lot of discussions recently online that center around fear… What could happen? What if we make the wrong choice? What if someone else does XYZ?

I get it. I’m the queen of “foreboding joy”. The queen. When Brené Brown writes about fearing people jumping out of the bushes suddenly, I laughed because I’ve thought that before. I’ve sworn something was going to catch on fire, or that the phone was ringing to tell me something terrible.

But what I’ve realized as a mom is that I cannot pass all those fears on to my kids. I cannot protect them from everything bad, nor would I want to. What life is it to be isolated at home, safe? What life is it, when everything is soft and sanitary?

I want my daughter to get dirty and to scuff up her knees. I want her to fall off swings, to make mistakes, to call out the wrong answer in front of the class. I want her to explore her world — to taste it, to touch and feel and breathe it. I want her to have friends who talk to her as a peer, rather than a pity project. I want her to ride roller coasters and scream her head off and discover the things she likes and dislikes on her own, with no predetermination by me.

I get that I am saying this from a position of privilege. My daughter and son are not medically fragile, which must bring a whole other layer of fear to the equation, where your fears are not nonsensical. They are firmly grounded in your experience and the warnings of professionals.

Even then, though, can we go too far towards protection and safety? I think about LM and his time at private day school. It was scary for us to imagine him going back to public school. His mental stability is incredibly fragile. When unstable, he is at great risk of severely hurting himself. Sending him back to public school felt so risky — what would happen? Would he end up on more meds? Hospitalized? Placed in residential?

It’s going well. Even if it didn’t, though, I think I would make the same decision again. He has opportunity now, and with opportunity comes risk, always. I can’t pretend to make that decision or know what shape it will look like for each family. There are so many ways to balance opportunity and risk. Every child, adult, and family must find their own way. The only thing I know for sure is that I cannot let my fears of risk prevent my kids from living the lives they want and need, daring and free. It’s hard to do, but so necessary.

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Oh, the things that they will say.

My whole month of AAC posts got sidetracked by what ended up being a month’s worth of meetings, phone calls, emails, and letters regarding Diva’s education, a month that has been so overwhelming and frustrating, a month for which I have no words. I’ve wanted to write and process the whole experience, but I still cannot quite find the words — not in any sort of coherent manner. Soon, soon, soon.

In the meantime, I’ll leave you with ten of my “favorite” (sarcasm) things that I’ve heard around Diva or Little Man over the past two years. All are approximations, because I can never bring myself to actually re-listen to the recordings of meetings.

  1. Response to a request for modified homework: “Well, he needs to learn how to do what everyone else is doing.” Or, any other rendition of “Well, he needs to…”
  2. “So, if everyone else is doing a research project together in a group, what will she do?”
  3. “We know these children…” and “Children like these…” and “a child like that”…
  4. Me: “She has never tipped a chair over before. Ever.” Them: “I hope for your sake it stays that way.”
  5. “She can’t go to music class. They are studying scales and composers.”
  6. “Well, I can’t make her see any better.”
  7. Me: “The goal would be to learn what works for her from this thirty minutes and then expand.” Them: “Wait, what exactly is your long-term goal for her? To be included all day?!?”
  8. “We let her talk all day. We don’t know what she is saying, but we let her talk.”
  9. “Yeah, exactly, she will only work on things that are meaningful to her.”
  10. “I can’t explain my goals because my allergies are acting up.”

And for bonus points, number 11 – answering a phone call mid-meeting.

And one that didn’t quite make the list: “How can he be exempt from a class-wide behavior system?” It didn’t make the cut because another team member stepped up and hit it out of the ballpark with awesome — “If it’s in the IEP, then you make it happen.” And that’s why that is one of my favorite schools.

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Just wash your hands already.

Diva has been with us for nearly two years. We struggle with her washing her hands. She is extremely resistant. She will yell at us. She will yank her hands away. We usually end up having to do some sort of hand-over-hand manipulation of her to get her hands into the sink, and it’s not well-tolerated. She is quite vocal about what she likes and doesn’t like. Washing her hands is clearly on the dislike list.

So, here we are. We have an activity and we have a challenging behavior. What do we do?

In one world, the world that Diva currently inhabits at school, the solution is to blame Diva. Her behavior is the problem, and her behavior must be changed. We can try many things to do this — increase practice opportunities, use hand-over-hand prompts until the last step, and give her a Cheerio or high-five at the end of the sequence. Great job, Diva! You washed your hands! We would track data to see if the Cheerio is actually reinforcing the behavior, which would be seen as increased compliance with the hand-washing routine. With some children, we would get lucky. We would see change pretty quickly. With other children, like Diva, we would not see change. What would we do, then? We could assume that she is “too disabled” to learn this skill, or that it will take an even longer amount of time to do so. We could see her continued screaming and yelling as evidence that she needs a functional behavior analysis and behavior intervention plan.

Or, in another world, we could see Diva’s resistance as communication — as meaningful communication. She is telling us that something is wrong with the only ways she has available — her movements and the volume of her voice. When she continued to resist the task, we could see this as boredom, frustration, and anger that her message was not being received by us. She could be totally pissed off at us for giving her a Cheerio in response to an actual need she is communicating. The whole thing could be OUR fault and about US — not about her at all.

It’s really easy to fall into the first world. That’s the world of school, of many medical therapies, of mainstream parenting, of the easy paths in our brain. Every once in a while, though, we open our minds long enough to see that the second world is the world we want to create for our child. In that world, Diva washed her hands this weekend with no problems at all. She didn’t scream. She didn’t fuss. She didn’t pull away. What happened?

We turned the water to warm.

Easy — so, so easy. And, really, how does she get the blame when it takes us TWO YEARS to try changing the temperature of the water? She’s the one that “can’t learn”? She’s the one that has “challenging behavior”? Yeah, we deserve every single bit of yelling that she gave us.