Neurodiversity

I Have More to Say

more to say

“I have more to say.” This phrase begins all communication when using the Augmentative and Alternative Communication (AAC) system PODD. It alerts anyone near the AAC user that he or she has a message to get out. We all have things to say. We all want to share stories and information, tell jokes, criticize and complain, ask questions, encourage, disagree, and accomplish a whole host of other purposes. Ultimately we want to connect with the people around us and give meaning to our lives. That is at the heart of all communication- connection and meaning.

Sometimes what we say may not always sit well with others and vice a versa.  Sometimes we may not express ourselves clearly or we use language that is hurtful to others without meaning to. Shoot, I think every one of us has at some point said hurtful things intentionally too. I know I have! And I always regret it too.

Communicating is difficult. Sometimes it’s difficult because for most of us, it’s too easy to speak or type before thinking and listening. I learned this lesson very poignantly this last week.

I was reminded of how careful I need to be with how I word things. And how important it is to use language carefully so as not to injure other people. In this regard, I’m still a major work in progress. A dear friend of mine, who has Angelman Syndrome, sometimes spends days gathering her thoughts and getting her body collected enough before she can get a message out. (Check out her incredible book HERE.) Can you imagine how different the world might be if all of us took the time to think and gather our thoughts like that and listen before we spoke?

Can you imagine how different the world might be if all of us took the time to think and listen, and gather our thoughts for days before we spoke?

I recently wrote a blog post (which I’ve since deleted) about dreaming big for my daughter who has Angelman Syndrome. In it I also shared a concern I had from a video shown at a recent Angelman event I attended. That was just a minor part of what I was wanting to get across but it ended up fueling a somewhat angry and upsetting dialogue on Facebook from people who felt directly threatened and attacked by it. That was not my intent at all, and I apologized.

I’ve since removed the post because I was devastated that something I wrote could cause so much strife. I clearly needed to edit that one a bit more before sharing. But remember, we can disagree with each other without it being belittling or a personal attack.

Ultimately I’m not sad I wrote and shared it. That post has made a lot of people, including myself, think hard and discuss in greater depth some difficult emotional subjects.

It has reiterated to me how important it is for all of us to come together and start being consistent with how we speak with and about our loved ones with Angelman Syndrome. It doesn’t matter if we are a mother, father, doctor, aunt, uncle, scientist, grandparent, celebrity, or sibling- it is critical that all of us embrace and consistently presume competence in our loved ones. It is not enough to attend or host workshops that teach this principle, it must permeate everything we say and do.

I share this because I care so deeply about how my daughter, and others like her, are perceived and represented by the language we use. I am by no means an expert in anything, but I do try to listen and notice things, especially how others might feel in certain situations. Language makes all the difference in building people up or tearing them down, and providing opportunities or preventing growth. Sometimes what we might think is a loving and encouraging thing to say, might very well not be.

First and foremost:

Individuals with Angelman Syndrome feel and understand the same way neurotypical individuals do.

I know I’m not the only one who’s heard comments about how individuals with AS are spared from some of the heartache and experiences we deal with as neurotypical individuals because they don’t feel or understand the same way we do. I don’t know why so many people, including parents, accept this false notion, except for the fact that we are too driven as a society to base people’s intelligence on inaccurate testing. Or perhaps we are looking for a silver lining for why some people are born with different abilities. Either way, don’t ever expect me to get teary eyed and emotionally touched if you ever, even with the best intentions, say something like this to me about my children.

We have got to stop saying things like this.

This archaic notion contradicts everything I believe and have experienced in regards to the understanding and intellect of individuals with AS, including my own children. These individuals understand loneliness, ostracism, discrimination, bullying, disappointment, and devastation, to name a few. Angelman Syndrome doesn’t give them a free pass that prevents them from experiencing all of life’s ups and downs. If anything, I believe our children are subject to greater heartache and feelings of rejection or hurt due to the vulnerability of their syndrome and them often not being able to talk about it. And it is extremely hurtful and insensitive to say they don’t.

I often like to mentally put myself in other people’s situations to better understand them. If I had Angelman Syndrome, how would I feel if someone said that about me? How would I feel if someone said I didn’t feel and understand like typical people? Maybe I would believe it because it’s something I’ve heard others say my whole life. But really I think I would be deeply hurt. Think how frustrating and upsetting it would be to hear that and not be able to yell out, “Hello! I’m right here! Stop saying those things about me!”

Maybe all my body would be able to get out would be a laugh or an arm swinging. And then that might be misinterpreted as me getting excited. I might then be told to calm down. We have to be so careful and respectful of how frustrating the bodies of these individuals are and that the outside physical body is generally a very poor indicator of what’s going on inside. They are trying so hard to communicate their intent and it is so difficult for them.

Recently my husband had some dental work done and opted for using nitrous oxide because he thought it would help with the pain. Unfortunately for him, it did nothing for the pain but instead pretty much shut down any control he had over his body. At one point he recalled that his arms and legs literally started flaling around and he couldn’t stop them! The dentist then said, “I think I may have that up a little too high…do you want me to turn it down?” To respond, my husband only had enough control to nod his head as quickly as he could.

My initial response to this story was, “Man, I wish I had been there to get this all on camera!” But then I stopped and thought, “Huh, I wonder how similar this might be for our kids dealing with dyspraxia and apraxia, when the brain is saying one thing and the body is doing another.” It was so frustrating for my husband and he kept wondering the whole time what was going on. He felt completely strange and vulnerable in not being able to control his body. That’s what our kids are dealing with every day, and unlike my husband, they don’t have a dial to turn it down.

To complicate things, sometimes as a result of that lack of body control our children also might hurt others on accident. I’ve felt terrible knowing I said some things that hurt others this last week and have felt considerable anxiety and nervousness because of it. Imagine how upset our kids must feel when they hurt others on accident and are viewed as dangerous. Imagine the level of anxiety they feel from not being able to control their bodies and then having to deal with the negative perceptions of others on top of that. I might never want to leave the house if that were me.

Being so widely misinterpreted and having my own competence questioned this week has given me only the slightest and tiniest glimpse into what these individuals experience on a daily basis. Can you even imagine what that would be like? I don’t think any of us really can, but we all need to try a lot harder to imagine better.

And I don’t care if someone’s disability leaves him or her nearly unresponsive on a daily basis, he or she will always have a sharp clear ability to feel and understand just like anyone else. That is the most respectful and least dangerous assumption we can give anyone in any situation. Presuming competence is always the safest assumption.

We show compassion and leniency on these individuals because of their physical limitations, not because of a lack of intelligence.

So what does presuming competence look like on a daily basis? Well for starters,

When addressing someone who has Angelman Syndrome, afford them the same dignity and respect as anyone else and speak to them in an age appropriate manner.

You know that higher pitched “Awww” kind of tone of voice that you’d use when commenting on how cute a baby is? My neurotypical son describes it as the voice he uses when talking to our cat. For whatever reason, we tend to raise the pitch in our voices when talking to infants, young children, or baby animals and we lay the sweetness on real thick.

Sadly, this overly sweet high pitched voice tends to get used too often by neurotypical individuals when speaking with older individuals with AS. I’ve written about “baby talking” in other posts and it is truly like nails on a chalkboard to me.

We have got to notice things like this more and do better. We don’t speak to each other in higher pitched “baby” toned voices as adults because it’s rude and condescending and insulting. I would be really upset if people did this to me every day. Wouldn’t you?

Individuals with Angleman Syndrome do struggle with auditory processing and we can be considerate of that in one way by just slowing down. Sometimes I need to say things several times in a slow quiet voice and just wait, when my daughter is struggling, and her body and auditory processing are less organized. But she always deserves my respectful adult voice.

Additionally, we CANNOT speak about these individuals in their presence like they’re not even there. We must avoid discussing private matters in front of them with other people, too. I know bowel movements can make or break a day in a lot of our homes but we shouldn’t be discussing things like that in front of our children with a random friend stopping by. I’m pretty sure I would be mortified if I had a toileting accident as an adult and had to listen to my parent casually talk about it with someone else while I was standing there.

We can also be respectful and ask for permission to speak in their behalf when it is necessary. For instance, whenever we are at the doctor, I try to preface our visits with phrases like “I’m going to talk to the doctor for you/in your behalf and tell her what’s going on. Is that alright?”

Lastly,

Use language that suggests to our children with Angelman Syndrome that they are capable of greatness with or without a cure.

There’s a lot of excitement right now in regards to finding a cure for Angelman Syndrome, especially with scientists now saying it is a cureable disease. But we have to be SO careful in the language we use when discussing this. I don’t want my daughter to think I want a cure because she can’t achieve greatness without one or that she’s somehow less without one; I want and support a cure for her because I don’t want her to have debilitating seizures or a frustrating body that doesn’t do what she wants it to, and because I desperately want her to have the gift of being able to verbally speak. What are our motives for wanting a cure? Whatever it be, our language must accurately reflect the inherent value of our children with AS at all times.

I tried considering myself as having Angelman Syndrome and that I just heard my parents say they were now going to save for college for me because a cure is on the horizon. If I heard my parents say this, I might wonder why I wouldn’t be able to aspire to going to college until I were cured. I think I would be hurt and confused. What would happen if the cure wasn’t what it was hoped to be? Would the college fund go away again at that point? I’m not saving for my daughter’s college fund right now because I’m not doing it for my neurotypical son either. They can both pay for their college education just like I did! Or trade school, or vocational school, or whatever avenue they choose to pursue. They can both learn how to create streams of income in order to achieve their dreams and aspirations.

There isn’t anything wrong with saving for long term care for our children. They are going to need aided support for the rest of their lives, that’s true. But let’s involve them in that process and give them the dignity of choosing who they live with, what they do with their time, what avenues they want to pursue, and always have the expectation for them to further their education and dream big regardless of what the future holds. I would be so disappointed and scared having others always making decisions in my behalf and I not being made aware of them or included in them.

If I had AS, I wouldn’t want to hear my parents focusing on what I’d be able to do if I were cured of Angelman syndrome. It would give the false impression that I’d be waiting for my life to begin at some future date. I would hope my parents could not just focus on what great things I could do with a cure, but encourage me to shoot for the stars today. In my opinion, it is much less dangerous to dream big now.

Of course I know our kids have limitations, they know that themselves, and some things might not be feasible. But I most definitely am not going to focus on that, but instead look for every way possible to make my daughter’s dreams come true with her being just as she is. Consider the difference between the language used in these two sentences and which one you’d rather have said to you:

There are going to be a lot of things you won’t be able to do in this life, and that’s just the reality of it.

vs.

Let’s look at every possible way to support you doing what you want to do with your life, despite the limitations you have.

Thomas Edison theorized 2,000 unsuccessful ways to make an incandescent light bulb. All he needed was to find the one that worked. And his invention has changed the course of human history. I can come up with 2,000 ways my daughter might not be able to do things the way others can, but all I need is to focus on the one that could make her life meaningful and exciting for her- and that’s for her to be able to communicate and autonomously choose how her life looks. It doesn’t need to be Harvard. It doesn’t need to be neuroscience. I mean really, what percentage of our population goes those routes anyway? I sure didn’t! And my life has meaning and purpose because it is driven by personal choice. Facilitating communication for our individuals with AS is the greatest gift we can give them right now, so they can make those personal life choices today.

Facilitating communication for our individuals with Angelman Syndrome is the greatest gift we can give them right now.

So I guess the question remains- what constitutes a full life? At its simplest core, I would argue agency, attitude, and being able to meaningfully connect with others. It’s the right to act and not be acted upon by others, regardless of what our circumstances are or what limitations life throws at us. And the ability to look for the good now and make opportunities now.

I’ve learned first hand how short this life can be. We can’t afford to postpone voicing and working towards achieving the hopes and dreams we have for our kids (and finding out what their hopes and dreams are) based on a future date or cure that may never come. Most of my greatest sorrow and regret has come from me not empathizing with and listening enough to Covey when he was here. I’m so sad that much of the conversation that transpired between us was riddled with frustration. “I have more to say” about all of this because I can no longer say anything to Covey, and I owe it to him to help improve others’ perception of him, his sister, and individuals like them.

Our children are at the world’s mercy in so many ways. I want to be the one who expands and encourages my daughter’s ability to choose and determine her destiny regardless of a cure, not the other way around. And I truly believe that it all starts with the language I use around her.

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