Author: Laura

April 3, 2019 What does autism acceptance mean to me?

I feel a little like I’m writing my first essay of the new school year (What I did last summer was…).  Challenging myself to at least try to write daily was a bold move, and I’m only three days into it looking at the rest of the days and wondering how on earth I’m going to pull this off.

But I’m going to try.  And that’s an important word for this post.

To me, autism acceptance means:

  • Knowing that I’m trying my best and accepting me knowing that I might not succeed.  I don’t just mean that as a message for the outside world, it’s a message that I need to give myself, whether it’s about me or about my kids.  They’re doing the best they can, and that’s okay.
  • Knowing that if I am having a particularly stimmy day, or if my kids are having a stimmy day, that people around us will understand what that means and will do what they can to support us.  Of course sometimes that may mean asking whether the stim is a self-regulating stim or an expression of joy… but for me personally it is usually a need for self-regulation. I’m okay with that and you can be too.
  • That people will try not to be put off by my difficulty with gauging personal space or the loudness of my voice.  I am working on being aware of it myself, and sometimes I’ll even comment aloud on it.  I try to laugh about it, but you need to be aware that I am actually embarrassed.  Acceptance in this situation means telling me it’s okay and that you know I’m working on it. (I’ll still be anxious about it, but you can’t really fix that- that’s okay)
  • Knowing that if I’m in full panic mode or if one of my kids is struggling in public, people won’t stare, and might even ask if there is anything they can do to assist.  Trying to help is not always easy, but it is an important step.
  • That people will try to let go of the whole eye contact thing- not just for me but for everyone.  It’s not helpful.  Just move off that, please.  If you work with my kids and I hear those words, you’ll hear from me on it.  WORDS DO NOT COME FROM YOUR EYES.  Let me watch your mouth and leave me be. It’s really okay to leave behind old ways of thinking.
  • That however people communicate, whether through spoken words, PECS, a communication app, will be absolutely accepted, supported, and understood.  Humans as a species have a lot to share with the world.  Just because some people don’t open their mouths and speak verbally does NOT mean that they don’t communicate.  If people aren’t given tools to communicate, they are being prevented a basic right of humanity.  Give people communication tools and patience. (By the way, some people use multiple forms, and that’s okay too!)

 

I am sure that I could come up with more, but these are what my 5am brain is producing right now!  That’s alright- I know that you have some too, and would love to hear from you about what autism acceptance means for you!

 

April 2, 2019: #RedInstead

Good morning!

Today’s post is meant to be where you post a #redinstead selfie.  I don’t have one, and I literally own nothing that is red, so I’m going to post this link to the website instead.  My sweetie pie is featured in the gallery on the about page!

Here you can read all about the #redinstead movement, which is meant to be one of the replacements for the Light It Up Blue movement.  I won’t link to that one, so as not to give it any more action online than it already has.

redinstead.jpg
Image shows three pictures: the first image is one of a smiling man with curly short hair wearing glasses and a red shirt, the second image is a pair of socks with red on the toes, and the third image is a pair of red shoes.
Autism Acceptance in April- 30 Days of a positive narrative

Autism Acceptance in April- 30 Days of a positive narrative

Hello, lovelies!  It’s that time of year again, and rather than write about what hurts to write about (light bulbs, puzzle pieces, blah blah blah), I thought I’d take a different approach. I want to flip the script, change the narrative a bit.  I’ve been working on shifting the mindset such that neurotypical (NT) people won’t talk about the autistic community as riddled with tragedy.  My hope is that they will start to be comfortable with understanding, accepting, and accommodating the autistic community. My hope is to see an end to those who are not autistic simply ignoring the voices of the autistic community.

I’m not a Tumblr person, but there is someone called Autie Jake over on Tumblr who posted a 30 Days of Autism Acceptance challenge, so I’m going to do my best… with any luck there will be 30 days of shorter posts here, all about being autistic.

Day 1: The intro post.

Who am I as a person… suddenly I feel very existential.  Maybe that’s because it’s 5am and I’ve only had one cuppa.

I am many things.  A parent to four incredible kids, an advocate, and self-identified autistic.  I have yet to decide for sure whether to seek diagnosis, mostly because I simply cannot afford it (and I know it’s the thing that helps me make sense of me, so I’m good with that).
I have tried hundreds of different types of crafts over the years but only stuck with one long enough to get a tattoo based around it.  I ran a half marathon so I suppose I was a runner.  I love (and I mean LOVE) rainbows and will 100% pull over on the side of the road to look for one when the conditions are right.  I absolutely misunderstand most people’s facial expressions, which is really only a problem at home because I misunderstand my own husband more often than I’m comfortable with.
I love music more than I love rainbows, and I love the feeling of music filling my entire self. One of my favorite local bands plays one particular venue where the bass and drums vibrate through the floor and right up through the chair to my entire being- I love that sensation.  But that same person has trouble walking down the hall in my office building because the heating system causes a vibration that hurts me. Weird.
I feel emotions – not just mine but everyone’s.  If I’m watching television and a character is crying, I am likely to start crying as well.  If a coworker is stressed and upset, I become stressed and upset as well. That’s hard, but I also feel people’s joy and excitement, which I really like.

I am quite sure there is much more that I could share, but I think that these are the things which make me immediately think of me.  So there it is.  Happy first day of Autism Acceptance Month! #30daysofautismacceptance

 

 

Progress isn’t just for kids

We took WonderBoy and Speedy to the movies today.  In the theater.  Speedy has been before, but this was WB’s first time in the theater.

Although he was quick to correct me- he’d been to the theater before to see a play, but not the movie theater.

But wait- there was that one time he went to the movies on the planet Eridia, he tells me.  So of course this isn’t his first time.

Yes, this is exactly the conversation that we had.  Whatevs, if you spend any time around us you know how normal this is.

Anyway…
There was a very popular kids movie playing at the theater and we decided to give it a shot.  We brought the noise-canceling headphones, which WB used, and we told him ahead of time that we could leave at any time if he wanted.

We got all the way to the end of the movie, to the start of the credits, when he asked if we could go.

I have to say, I am SO proud of us (his parents)!  We didn’t stress out, we didn’t worry, and everything went great!

Not where you thought I was going with it, right?

Look, here’s the deal.  The progress made in terms of being able to navigate the world around them while we work on changing the world to be more accommodating isn’t ALWAYS about exactly how they’re doing.  A lot of the time it’s about how we are doing. When we’re calm and have a plan and can provide information at the beginning so that there’s nothing unexpected, things go more smoothly. When we’re not stressed about the outcome, the outcome isn’t the important part.  Because even if things had gone sideways (for any one of the four of us), we would have handled it.

Everything IS awesome. 😉51929162_10219121961302193_5750890677391065088_o

Don’t regret the child you don’t have- celebrate the child you DO have

I read a post this morning on Facebook that made me need to write again.  It happens periodically, I say I don’t have time/energy to write again until something lights a fire under me (figuratively) and I sit down at the computer.

Here is the image that was posted by an OT page on Facebook:

commas
image is a grey background with white words which read, “Developmental delays are commas, not periods.  Your child can still get there.”

Now, I do get what the intended meaning is here.  So many parents are worried about their child’s developmental “delays” (I really have a lot of feelings about this, can you tell?) and they fixate on the many developmental markers that have been decided make up a typical child. They worry that their kid isn’t “normal” (yuck) and unfortunately all of those feelings are not only felt by some many parents, but their kids too.  Your children can hear you talk about them.  

Hold the phone, sister.  Pull up a chair and sit down, Mama’s got something to say to you.

In all of that fixation on the missing of developmental stages along the way, have you noticed how incredible your kid is? Have you seen the way your child watches light move through trees?  Have you heard your beautiful offspring wax poetic on the subject of a particular species of insect that lives only in Burma? Have you seen just how much love and joy is in their eyes when they see you?  Have you noticed how they are with their friends and siblings?

I would like to backtrack to the word “delay”.  Who decided that certain traits at certain ages make a kid typical, anyway?  What about every person in their own time?

All I’m saying is stop focusing on the damn commas and periods and developmental markers and whether or not a person is reaching them at the same time as everyone else.  You’re missing the magic and beauty and messiness of life, sweetheart.  Your child will get…wherever they get, whether that is “there” (per the image above) or somewhere else.  And you know what?  That’s fantastic!  It’s brilliant!

It’s about time to celebrate the child you have, rather than regret the one that you thought you’d get.

Being a voice for advocacy

I’m breaking protocol slightly by writing this, because it’s about one of my children.  Don’t worry- I have not abandoned my core principles, I will be asking him prior to posting whether I have his permission to post it.  I want to write it all out first, now, because frankly it’s 5:25am and the house is still quiet. The wee tyrants have not yet risen to take over another day.

And so, here we go…

I want to talk about a couple of things that happened very recently, because they bring up a couple of Very Important Points.
The first thing happened during a review of Speedy’s* school supports.  This meeting took place because during last years Individualized Education Plan (IEP) meeting, we insisted on talking about our main concern for him:  the fact that one of his documented supports (and an important one for him) was not being provided. At all.

desk flipping
Image shows a drawing of a person flipping the desk in front of them, and shows the text: “Flip a table, even this meme isn’t enough to express my anger”

Soooo…. at the meeting which took place in the spring, we were promised that the missing support would start in the fall.  We all agreed that a meeting in late October would make sense, to review what supports are in place and whether his IEP is still relevant to him. We were quite relieved to discover that he is now getting all of his supports in all the right ways, and we updated the wording of the IEP to suit his current needs within the classroom.  Whew!

During the course of the meeting, his primary teacher told us about a really cool moment that Speedy had recently.  There was a group of puppeteers coming to the school to put on a presentation about being together in a setting with kids who might be different.

Speedy raised his hand with a true sense of purpose and said “I have a disability!  I am autistic and I have ADHD and there are LOTS of kids who are autistic and it means that their brains work a little differently!” One of the people from the puppet group replied, “wow! You really know a lot about autism”, to which he apparently looked at her and said “well of course I do! I’m autistic!”

Let’s unpack what just happened.

In that moment, by being SUPER EXCITED about autism (hint: he’s super excited about most things, and I’m so glad this is one of them), he just taught an entire room of children AND adults that we don’t need to whisper about this.  We don’t hide from it.  We celebrate our differences and we learn how to support each other through struggles.  The big, giant takeaway here is that being autistic need not be considered an embarrassment any more.  Feeling stimmy? Get those hands flappin’!  Feel like singing the theme song to Winnie the Pooh on an endless loop through Target? DO IT.  Want to carry a weighted stuffed animal everywhere because it helps you feel less anxious? That’s brilliant! Where can I get one?
The point is, neurotypical people have a LOT to learn about us.  Why not let us tell you what it’s like?
The follow up point, and a very awkward segue is, we as members of the neurodivergent community may have a lot to learn about people with other types of differences.

Speedy gets Occupational Therapy services at school a couple of times a week.  One of those times he is with two other students.  The other day, he noticed that one student was wearing a hearing aide, so he asked her about it.  Her face looked sad, and she seemed to feel sad about having to wear it.  He quite quickly told her that he thought it was AWESOME that she could use something like that to help her hear, and she started beaming when he said that.  In that moment, one small act on his part may have contributed to this one student feeling better about her difference.

proud mama meme

I’m happy to say that this post has been read and approved by Speedy.

*for our newer readers, Speedy is the internet-safe version of the name I use for my third son.  🙂

She’s back…

I can’t remember the last time I wrote anything here.  It’s interesting to me how things have changed.  When I made the Very Important Decision to only write about my own personal journey through autism, anxiety, and a growing list of health concerns rather than writing about my lovely autistic children, a little voice appeared to tell me that no one would be all that interested in following.
Of course, that’s not really true, it’s just that there is SUCH a massive draw to blogs about autistic children, mostly for non-autistic or not-yet-diagnosed parents of autistic children.
And that, my lovelies, is part of why I stopped writing about them.  I now only write about them on the days that they permit me to do so, and after we’ve talked about the pitfalls of the internet and having your personal life out there for all to read and judge. There are previous posts about all this, so I’m not spending too much time on the topic today.  Also it’s early in the morning, and I’ve only had one cuppa.

So anyway.

What to write, what to write…

I have a somewhat funny/insightful story to share.

You see, after a two-year break, I’m going back to college (again) to see if I can get past my own executive functioning issues and get my degree.  I started college several years ago when I was working from home and could be really flexible with my time.  When I took a more or less 9 to 5 job in an office, I decided that it was not humanly possible to work, be mum to four kids, be a decent partner in my marriage, and also go to college.  This is very much not true, but that’s what I told myself.
Now it has been two years, and I’ve gained so much knowledge and practical experience in human services since then.
My school mentor asked me to come up with at least four possible essay titles, as I’ll be writing essays to the school in order to gain college credits for my life experiences.

Okay first of all, that request felt positively insurmountable.  As if Kilimanjaro was suddenly in my head, blocking access to All The Things I Know.  It was so vague, too free-form for me.  If you told me to write a haiku about an eagle, I’m your girl.  Ask me to write “possible essay titles based on what I know”?  UGH!

So I sat down with a friend, and she helped me craft these GORGEOUS, Masters-level titles.  I mean they were brilliant.  And I went home and crafted a few more.

Yeah.  So I was feeling really amazing about this, and smugly emailed them to my mentor, who promptly emailed back edited versions of all the titles.  He’d boiled them down to two or three words each.  Simple statements.  For example, where I’d written:

“Contracts management and quality metrics: the relationship between state programs and non-profit human services organizations and the development, execution, and monitoring of quality metrics”, he wrote “Contracts Management”.  What I wrote:

“Supporting multi-modal communication:  Assessing needs, identifying strengths and opportunities for the development of meaningful communication”

and

“Sensory integration and its impact on interaction with one’s environment: How regulating sensory systems allows the cultivation and further development of meaningful contact with inner and outer worlds”

What he wrote: “Diversity in the Workplace”.

First let me say that there is nothing wrong with his versions of my titles.  After I recovered from the initial shock of seeing beautiful wordsmithing tossed away (yes, I am aware that “wordsmithing” is not a word, and the irony therein), I started to laugh.  I started to laugh and I haven’t quite stopped.  Because at the end of the day, this was a perfect summary of my entire life; I am given a Thing To Do, so I obsess and I plan and I strategize, and generally OVERACHIEVE the thing, only to discover that I could have done a third of whatever it was and that would be acceptable.  To me, it feels like I would not be doing my best.  And I take the instructions SO literally.
If my mentor had said, for example, “come up with four titles for possible essays- they should be no more than three words each”, I would have done just that.  But because his instruction was vague, I took it all the way to the top.

People.  I need parameters.  Please don’t be vague.

Since I typically provide a takeaway from each writing, here it is:  Understand that the best way to provide the proper information (not just for the autistic brain, but all brains) is to be specific. Don’t take for granted that the other person knows what you meant, spell it out.  Then if they later tell you that they don’t need that level of specificity, you can tailor your information for their processing style.
The reason I say this is that when you make things (including information) accessible and understandable to all people, you are modeling inclusive practice.  When everyone knows what something means, EVERYONE knows what something means, regardless of how their brain takes in and handles the information given. When you make it so that everyone can get to where they need to be, whether that is a geographical location or an understanding of a concept, you are making that place inclusive.