Author

Jen

Speech-Language Pathologist. Nature-loving, book-reading, coffee-drinking, mismatched-socks-wearing, Autism-Awesomeness-finder, sensitive-soul Bostonian.

On being where you’re at

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There is something powerful about being real. And raw.

About answering “Not good” to one of your truest friends who is asking you, and really truly wants to know, “How are you doing?”

About having your friend and teacher ask you, “What’s wrong?” because she just knew you were “in it.”

About cuddling up next to your fiance and saying your thoughts and fears, and having him pull you closer and making you laugh.

About telling a trusted co-worker exactly where you’re at, and having the response be, “You can always come to me. There won’t ever be any judgment.”

About just allowing yourself to BE, wherever it is that you’re at, without hiding, without pretending, without faking. No matter what that means, wherever that is for you.

We’re afraid to be judged, we’re afraid to be seen as “dramatic”, we’re afraid we’re complaining too much. We’re afraid.

But the fear makes us think that we have to BE in ourselves, as ourselves, BY ourselves. And we don’t.

p.s. There’s also something powerful about writing this blog post, and knowing you’re being real and raw in it, and knowing people will read it, and knowing they might have thoughts about it, and that they’ll make assumptions, but also feeling okay about that, because being real and raw is what you believe in, and you’re brave, and part of having this blog is to be true and honest, so knowing it will resonate with people and maybe not with others, but it’s all okay.

Clarifying

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I would like to clarify a few things about my last post. Now that I’ve actually read what I wrote, heard some good feedback, and had a great conversation with my dad about it, I’m have a bit more clarity.

I’m going to start with an example. Examples and metaphors and comparisons help me fully understand things. So: imagine that, when I was born, there was some way of knowing that I was going to be a highly-sensitive introvert. Would I have wanted doctors to tell my parents, “eh, just let her be, it’s who she is and whatever that brings with it, she’ll deal with, it’s just her”? NO. What I would want them to say is, “Your daughter is a highly-sensitive introvert. Let’s give her support around managing her sensitivities and intense emotions, help her with her anxieties and obsessions, and capitalize on how this makes her who she is.” If those same doctors had said, “Your daughter is going to be a highly-sensitive introvert! Let’s help her recover from this so that she never feels extreme emotions and doesn’t have anxieties and quirks” then I would’ve lost who I am at my core. I would have lost my love for nature, my mixing of senses, my tearing up at a sunset or a song, my intuition around people, my understanding of the kids I work with…..it goes on and on.

That is what I was trying to get at in my last post. Do I want doctors to say, “Your child is autistic. Okay, good luck with that”? Of course not! I’m a speech-language pathologist. I believe in therapies, of all forms. I believe in therapies in all forms for all individuals, neurotypical or autistic. I believe in early intervention, I believe in getting children all the supports they need as early as possible.

I believe in helping them to be functional in their lives. Being as independent as possible. Being safe. Forming friendships. Connecting with others. Learning.

But I don’t believe in trying to extinguish their personal interests, their stims, their scripts, their quirks. That’s their core, that’s who they are. If we try to remove those (harmless) aspects of them, we remove their essence.

So when it comes to treating autistic individuals, there’s a difference between removing their core being, and helping them reach their full potential and quality of life.

And, as my dad pointed out, it’s also an issue of semantics. The term “recovery” is just a dangerous term here. It indicates that the individual is afflicted with something that needs to be fully gone. So, I’m particularly sensitive to the idea of helping kids “recover” from autism. Again, it’s an and, not a but. I’m sensitive to the term “recovery” from autism. And, I believe we should do everything in our power to support them to be the best they can be, as they are.

Babbles about autism

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Warning: this is not going to be coherent. (Although, if you’ve read any of my posts, that won’t surprise you). This is a stream of consciousness, not edited, not thought-out, not planned. Just thoughts spewing out.

I was told about a woman who wrote a book called Autism: Pathways to Recovery. I was immediately apprehensive, because anytime the words “autism” and “recovery” are in the same sentence, my heart starts to beat a little bit faster. I glanced through the book, and I do like some of this woman’s thoughts. Being the daughter of a well-known, truly incredible (not just saying that….really) naturopathic/homeopathic doctor, who has helped countless people with various physical and mental conditions, by treating the whole person, the underlying causes, the deeper issues within the system, I do firmly believe in naturopathy. I also do believe that autism is a genetic/environmental interaction. Maybe some people are wired for autism and don’t present as autistic, maybe some are wired for autism and with toxins and environmental substances and issues, they do present with autistic behaviors. I think that’s part of it, and I also think there’s part we don’t know, and I also think that it’s more important to help promote autism acceptance and support rather than harping on a specific gene that may or may not cause autism. HOWEVER. I do not believe that every person’s autism is caused by environmental toxins. I do not believe that autism is something that can all of a sudden “disappear” with the right treatment. Yes, I think that there are some people (because I know of some) who do have a better quality of life with diet modifications, reducing inflammation, healing the digestive system, and treating various bacterial overgrowths. But doesn’t anyone?! I mean – my quality of life is better now that my digestive system is healing. Most people feel better when they stop eating refined sugars and genetically modified foods. So, yes, of course, autistic individuals will also have some improvement in their quality of life when those modifications are made. But there is a BIG difference between improving quality of life, and recovering from a disease. Autism is not a disease.

I know some may disagree. I know some see autistic individuals, particularly those who are completely unable to care for themselves, who can’t speak, struggle to communicate, hurt themselves, and think that autism is an awful affliction. And, I understand that. And, I understand that we need to do everything we can to make their lives as full of life as possible, whatever that means for each individual.

But it’s so dangerous when we start talking about autism as a disease, as something we need to recover from. And that’s what this author does. Over and over, she promises recovery, she promises that children will get the chance to get better, to recover, to be free from this condition. And that’s not fair to all of the autistic individuals out there. Autism is a part of them. It’s not a disease. We can’t equate autism to cancer, to depression, to Alzheimer’s. I think of my students with autism. Their lives are hard. I’m not denying that. These issues are not mutually exclusive. It’s not a “but”, it’s an “and”. It is hard to be autistic. AND, it’s not something we need to “save” our kids from. Autism is a part of who they are – if we took away the autism from them, I don’t know who they would be. They’d lose their personality, their characteristics, their amazing quirks and brilliant insights. They wouldn’t be themselves.

I stopped reading when the author wrote, “I will not give up until every child is given the chance to recover; until all of the
pieces of the puzzle fit together, and this chronic condition no longer threatens the next generation.” I was then fuming, and immediately started typing this blog post.

I have no doubt that this author is a brilliant doctor. I firmly believe, even without knowing her, that she means well. That she works hard. That she comes from a place of caring. That she has good insights. That she’s done years of research. That her research is substantiated. That she is a research-based doctor, not a clinical doctor. That that makes a difference.

But there’s danger in only seeing her side.

(I’m not even going back and re-reading what I wrote, because it’s likely so disorganized that it makes no sense, and I probably omitted key points and facts and I will likely get a lot of flack for it, but that’s okay, so here we go, posting it now. Please share your thoughts – I am certainly no expert, nor am I coherently expressing my thoughts, and I would love to hear what you think, whether you angrily disagree with what I wrote or whether some of it resonated with you. I’m all about the stream of consciousness)

 

Tainted

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It is so hard for me, lately, to feel positive about one thing in isolation, without it being tainted by (my own doing?) negative feelings about something else.

That was not coherent.
(This – another level of understanding of my 5th grade student who, told me, “I know it in my brain but I can’t explain it.”)

Anyway. I feel good about having cleaned the kitchen, but then discouraged that I didn’t clean anywhere else. Good that I caught up with a friend, bad that there are 3 other people I need to call. Proud that I wrote a blog post, defeated that I didn’t respond to my emails. Accomplished and strong for going to the gym, discouraged that I didn’t do more there. It’s so easy to fall into that perfectionistic way of being. It’s so easy to let successes be tainted. Well – am I letting it, or is it just happening? Am I doing it to myself (blame?) or is it just occurring (cop-out?)? Does it matter?

For the record – staying present, in the moment, is not always as easy as we make it out to be.

If only I could capture it

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Do you ever wish that you could capture other senses, the way we are able to capture sight with photographs?

I take so many pictures of flowers, sunsets, the sky – and I can always go back to them, which I do, and look at them – remembering what those colors and that light looked like. Anytime I want to.

But I wish I could bottle the other senses, too. I wish I could capture what spring air smells like, what a warm breeze feels like. When I step outside and the air is just….perfect, I drink it in. I take deep breaths and gulp in the sweet air, allowing it to course through my body. If only there was a way to put that smell, that feeling, into a cup or a bottle or a picture or a something, so that on a cold, dreary day, or when I feel run down or discouraged, I could have that air back, the same way I can go to my pictures and look at that sunset.

In Declan’s head

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Ed note: The following is from the (imagined) perspective of Declan, an autistic 7th grader who I have seen for speech language therapy for several hours each week for two years. Some of this he was able to express in my words to me. Some of it I could figure out. And some is imagined based on what I know. I hope some day he will be able to tell me what I got right, and what I missed. Be kind, this is a weird kind of writing for me! I’ve never done anything remotely fictional before. All names have been changed.

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I walk down the hall, feeling the squirmy feeling in my stomach. It is excitement. Jen is outside her office, like she always is. She says,  “Hey Declan! It’s good to see you.” A few times earlier in the year she forgot that second part, so right before we began class I’d whisper to her,  “It’s good to see me.” I whispered because that way it would not bother the other friends. And then she would remember and say it to me.

I look at my friends in the room with us. When I was a little boy, Mommy and Daddy and teachers at the other school called everyone friends. But these two are my real friends. They like me and I like them! I grin and whisper to one of them,  “C for Carly!” and Carly smiles and says back like she always does,  “That’s right Declan!” She understands why I’m saying that, I think. It is because on the show that is Sesame Street that was on when I was a little boy, there was a girl named Carly and that’s what they said. And when I say that to Carly now it is to show her I like her like I liked Sesame Street. And she likes me too. Then I look at Maya, my other friend. I do our Friday routine. I say to her,  “What day is it, Maya?” and she exclaims,  “Friday!” We like our routines.

I am feeling so happy. Everything is right. Except then Carly and Maya start talking about who will be the teacher when they play school. This makes my belly squirmy but not the good kind.

“Ugh,” I tell Jen. “I really want to start our work. ”

Jen say, ” I know. But we can give them one minute to talk.”

“Because why?” I ask. If there is a reason, it makes my belly calm down. Jen knows that. She always tells me the reason.

“Because it is okay to let people have a minute to talk. It is good practice for them to talk to each other. And it is good practice for you too. Like, is this a 5 problem?” Jen asks.

I grin because not only did Jen give me a good reason, she is launching into one of my most favorite scripts that always makes me make happy noises.

“No it is not a 5 problem. We don’t have to say….” I wait for Jen to do her part.

“We don’t have to say,  ‘AH!  STOP TALKING WE HAVE TO WORK RIGHT NOW!!” I love when Jen fake screams. I make some happy noises.

“We could just say…. ” and together we say, “Oh well, I can be flexible.”

Now I’m feeling much better. I watch the videos in my brain from when I could not be okay with that, from when it would make my belly feel so awful that I might scream. It is different now! I’m a bigger boy and I can use my scripts to help me feel soft and squealy instead of hard and breakable!

We get started with our activity. We are talking about problems and solutions. We talk about what’s a wacky solution and what’s a smart solution. We are practicing calling 911 because Carly wants to act out one of the situations. She is in theater club. My brain knows that in the file of Carly that is in that folder in the brain.

Carly pretends to dial 911 and Jen pretends to be the operator. This is pretend. I know that now because there is not a real phone. I play pretend too sometimes, like when I feel heavy because a friend is absent so I pretend call and talk to them so I feel better. Jen is telling Carly that the pretend officers will be there right away. It is sillyscarystrangefunnybumpyhardwhirly so my mouth laughs. Jen says,  “I know! It’s a little funny pretending.”  I am glad she doesn’t tell me to stop laughing. I am not laughing. I think other friends and teachers hear laughing but that is not what my body is trying to do. I don’t know how to explain that. But my friends and Jen get it.

I start thinking about going over a bridge because I love bridges. And then I imagine putting the bridge on my head. Jen used to teach me that we could script about that, but in real life, it isn’t possible to do things like that. I know. But in my brain real life isn’t going on. Anything can happen which is why I am making a bridge go on my head. I start laughing and then remember, OOPS! Out loud I remind myself,  “Pause that thought! You can save it for later.” Jen gives me a thumbs up. I pick up my pencil and on the paper next to me, I write,  “Putting a bridge on my head.” This is a paper where I can write anything I want so that the words are still there, just not in my mouth, and my brain will remember because my eyes will look there later so I can tell Jen and Carly and Maya about it.

I give one last squeal, because I am excited to tell them about the bridge, and then I make my ears listen to the group.

Body shaming and fat talk: they need to stop.

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As always, this is a post that’s been brewing in my head for some time. 
No time like the present to babble, right?

So here’s the thing. Body shaming and fat talk NEED to stop. I don’t think there’s a single person out there who would disagree. But there’s a problem, a disconnect. Because despite everyone agreeing – it’s not getting better. It’s getting worse. Fast. 

I could get into the statistics of eating disorders, of body image issues, I could tell you real-life stories and point you to news clips and articles. And every single one of you will nod your head, agree that this is a huge problem, that it needs to stop.

But very few of you will do anything. The majority of you will go to work tomorrow and talk about how many “points” you’re eating during lunch. You’ll talk about how you want a piece of candy mid-morning but that you shouldn’t. You’ll compliment your co-worker on how she looks, which will make you think about what you don’t like about yourself, and more likely than not, she will dismiss it with a, “yeah right, I wish.” You’ll then start the back-and-forth of well at least you fit into a size ___ and well that’s only because I went to the gym last night and yeah, I wish I could eat anything I want. And the funny thing, that’s not so funny? It’s pointless. It will leave you feeling worse than you did before. And maybe you’ll realize that, maybe you won’t. But it fuels the fire. And my god, this fire has got to be put out.

Now. That’s a huge generalization. I realize that. I’m trying to make a point. And yes, there’s commiserating. There are absolutely days that I complain to a co-worker or a friend about how I’m bloated or don’t love my outfit, or just feel uncomfortable in my body. I might make a comment and move on. Because I’m human. And in that case, it’s beneficial. But the opposite? Where that turns into the constant back and forth that truly is less about comfort and commiserating and more about who has it “worse”? Pointless. Ineffective. Makes everything worse.

Ask yourself. When you’re sitting at lunch with your co-workers, does it REALLY make you feel wonderful inside to engage in 20-minute conversation about who ate more or less, who is or isn’t losing weight, who has the worst body image, who has or hasn’t gone to the gym for how many hours? Really? Or does it make you feel better if you have a pleasant lunch, talk about work or your families or the news or LIFE, and allow the food to go into your body to nourish it without consciously or unconsciously making yourself feel guilty for it?

Body shaming and fat talk need to stop because they don’t accomplish anything positive. And, they need to stop because as they continue to be present in our day-to-day interactions, they’re ruining our relationships. Sometimes if I’m around certain people, I almost feel like I can’t contribute to their conversations unless I engage in body shaming conversations. It’s all people talk about. I’ve sat at lunch before, silent, because I have absolutely nothing to say other than “for the love of god, PLEASE stop talking about this.” Somehow, our relationships have become largely about competition, about dragging each other down, about focusing on flaws and negativity and spiraling it further and further for each other. 

I know this isn’t going to change anything. You’ll nod and silently agree. And then, most likely, nothing will change tomorrow. But maybe? Just maybe…you’ll hold back those comments tomorrow. Maybe you’ll talk about the weather, about work, about a book you’re reading. Maybe you’ll notice what someone else is eating and silently acknowledge it without focusing on it. Maybe when you find yourself wanting to tell someone how “lucky” they are, for whatever body/food reason, you’ll let that thought float out of your head. And maybe you’ll realize – you’re happier that way.