Monday, May 20, 2013

A Poem by Scott Lentine

Here is my most recent poem from an event I attended in Boston called All Aboard The Arc!, a charity event to help peoples with intellectual disabilities. 


All Aboard The Arc! Anthem

Breaking down barriers
Opening up doors
Letting every individual’s opportunities soar
This is what All Aboard The Arc stands for

Changing norms that is the goal
Making sure society does not leave us out in the cold
Struggling every day to gain equal rights
Obtaining this vision through passion and might

I’m taking this journey with you
I want to be a member of your crew
I am pleased that my ideas have gained a new world view
Together we can see our dreams come true

We are here at All Aboard The Arc! on the 18th of May
Your participation helped make this a bright day
You can see individuals demonstrate their true abilities
All in part for a great charity

Sunday, May 19, 2013

In Memorium: Mikaela Lynch

Sunday Stillwell, over at Adventures in Extreme Parenting, has a blog-link for all those bloggers who are honoring Mikaela Lynch and offering empathy and support to her family, as they deal with the tragic loss of their daughter.

Wandering is a terrifying experience for families of autistic children who know no fear and have an intense curiosity. Many of us, more than half, have children who do or did wander.

It can happen in the blink of an eye, in the turn of a body, in the moment we run inside, or into another room, to grab something really fast. It can happen and does at schools where staff and teachers, who are entrusted with our children's safety, can be distracted by their other students, their other duties, by unfortunate oversight.

We're thinking of Mikaela's family, sending them our well wishes, our deepest condolences and our understanding.

Wednesday, May 8, 2013

Guest Post: Alyssa from Yes, That Too

From Yes, That Too
What Reading Self-Advocate Blogs Does

I probably wrote this way back in October, and I have had thoughts about the term self-advocatesince, but here's one of the things I wrote on Autism NOW. Not sure when the rest will be up.

Trigger Warning: Mentions of abuse, tragedy/burden talk

There's plenty of autistic people blogging, mostly adults since it's mostly adults who blog. Most of the ones I've read, most of the autistic adults who are involved in advocacy that I've talked to, most of the parents who "get it" say how important it is to listen to autistic adults. Some people might take the "what's in it for me" approach. I'd prefer that self-determination and the right to be included in conversations that concern your own future be reason enough, but just in case it isn't, here are some answers of how it really does help parents to read self-advocate blogs and how it really does help kids when their parents "get it," which is a pretty common result of reading them.

You can have hope. Too many of the resources you will find about autism paint a rather dreary picture of a person who will never do, well, anything. Self-advocate blogs and blogs written by Autistic adults that don't have any more relation to autism than "the writer is Autistic" both give back the idea that yes, Autistic people really can be satisfied with their lives. It's not even that unusual. It also gives the idea that somehow becoming less disabled isn't a prerequisite for being satisfied with life, which helps with seeing your kid as something other than a tragedy.
You can get a good idea of what needs to change so that your child will be OK as an adult. Unfortunately, many of us have had some bad experiences. Reading about them is hard. Imagining that something like that could happen to your child if societal perceptions of autism don't change provides quite the impetus to make sure things do, and it can help you realize that the way you treat autistic adults is, well, the way you are suggesting autistic adults should be treated. That's how you're suggesting people treat your child later.

You can get a good idea of what therapies and skills your child will find most likely find useful later (communication skills of some type, ability to speak up about problems, ability to remove oneself from a bad situation) and which ones are less likely to be useful/more likely to make your kid really, really angry (suppressing all stimming, working towards a career that is not interesting, being taught not to have boundaries.)

You might get a better idea of what is going on in your kids head. Plenty of people talk about how frustrating it is to have no clue what their kid is thinking, and while we don't know exactly what's going on in any head besides our own, there is a good chance that at least one of us has reacted similarly in a similar situation, and it's reasonable that something similar was going through our heads at that point. (Demanding these explanations is bad because it's not our job to translate your kid, but I'm not arguing if you get that understanding from stuff I write anyways and I'm an educator at heart so I'll probably try to answer if you ask.)

You might get a better idea of how your kid can communicate better. (Typing is a favorite of mine, and is generally worth a try.) You can get ideas for things you can try with explanations of exactly how and why it helps and how to tell if it is working. 

Being able to think of your kid as something other than a tragedy and a burden is good for your mental health. It's also good for your kids mental health, since knowing that your family considers you a tragedy and a burden really sucks. Like, this is of the level where people have committed suicide over being considered a tragedy and a burden. Talk to any parent of a child who died of cancer- a living child is much better than a dead one, always. Go read Don't Mourn for Us while you're at it- it covers the idea that you have an autistic child, and the neurotypical child you may have expected never existed, is not trapped inside the child you have. Having a mentally healthy autistic child is much better than having a psychologically traumatized autistic child, too. Basically, realizing that your kid being autistic is not inherently tragic is going to be good for both your and your kids mental health. 

Long story short, as long as your goals for your child come anywhere near lining up with the ones most parents of neurotypical kids I've spoken to have (wanting the kid to be happy, satisfied with their own life, not in danger of dying due to physical/medical needs having been neglected, not traumatized, not getting abused,) reading the blogs of autistic people is a way to realize that all this is possible and give you both hope that this will happen for your kid and ideas on how to help your kid make it happen. Sure, you won't be there to take care of your child forever, but if you help your child learn to take care of his or herself and to get help from others when needed, you won't need to be.



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