Month: October 2018

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.