Changing awareness to acceptance

April being "Autism Awareness Month", I know I need a post at the beginning of the month, but I really don't have much affinity for the awareness mantra. I guess awareness is a step, but it seems like such a minimal goal. And what does it mean? That you've heard the word autism? That you listen to stats about diagnosis rates going up? That you have some vague feeling about some sort of cause or cure needing definition? That you know someone with autism and you're willing to pitch in by buying a blue light bulb and turning it on? None of these activities mean much to me or to msk, so connection's a little rough.



I'll take passion and joy over "normal" any day

 Two years ago, I posted about moving beyond beyond awareness to understanding. This year there is a relatively big push to change from "Awareness" to "Acceptance". You should read this excellent post by Steve Silberman here that ties together, from many sources, how to make the world a more accepting place for autistic people.

So, following along with the theme of that post, here are my top five ways that people who are interacting with msk could change to make msk's life better - more respectful, more tolerable, more understanding.

1. Presume competence - If you have a hard time knowing how much msk can understand or do just by looking or listening to him, give him a chance to exhibit his skills (in his own way and time). And while you're at it, try not to talk about him like he's not there - honestly, it doesn't seem to bother him, but it depresses the hell out of me.
2. Look at reactions to gauge what can be tolerated - With limited expressive language, especially in new and different situations, msk is not going to ask you to slow down or stop talking. Distress is evident if you look for it.
3. Don't expect quick comprehension of social queues - This is the flip side of #2. Msk has a hard enough time trying to process verbal inputs. If you want to give feedback, state it explicitly, rather than hoping he'll pick up on that disapproving frown.
4. Use simple language, slowly, and wait for responses - Words are tough for msk to process. Extra time and plain talk will give him the most chance at success.
5. Work to include - Once you strip away the expectations you can see what msk has to offer as a positive contribution to a school or a social group or a family. If you really believe in diversity you will spend the extra effort to pull him in. 

And while I'm at it, there are some ways society as a whole could evolve to make life better for autistic people generally.

1. Don't pity - It's a mindset change, but there are different ways to be than "normal". Msk is not depressed about himself, so don't feel bad for him. I'm pretty good with my life, so I could do without the "Oh this must be so hard for you." type comments. If you barely understand what's involved in msk's specific brand of autism, there's no way you know how you would feel if you were him or you were me. Curiosity and questions and seeking to understand are great, but pity is a roadblock to respect.
2. Realize that autism is not just about kids - As much as we've worked to figure out how to make schools work, there's a whole lifetime ahead of autistic youths. There are plenty of autistic adults. Don't marginalize them because they are grown and are trying to figure out a place in society. Respect and inclusion, and the work required to achieve them, don't end at 18 or 21 or 45.
3. Welcome differences - Encouragement should be based on development and growth, not an image of "normal".
4. Listen - It might be non-verbal, but if you pay attention to all communication you can enable self-determination. All people want to have a say in their future. Goals and priorities for a self-determined person are likely to be different than what you presume when you don't listen.
5. Actively accept differences - I posted a while ago about someone calling the police when msk was feeling frustrated and communicating it. This attitude of shaming or confronting people who are acting outside of your idea of normal, with no intention of seeking to understand first, is not going to change anything beyond making a lot of people feel miserable. When you see something different, seek to understand, and to whatever level is appropriate for the situation, accept and acknowledge those differences. We might be talking about a smile and a nod rather than a lecture - it's hard to over-state how much this can mean.

And on the college front

Yes, these are the goofballs that are now somehow or other ready to be thinking about college...sigh

The letters we have been waiting on have started coming in. They're not all good news, actually, so far they've all been rejections. The tally is 8 schools applied to, 3 accepted, 3 rejected, 2 outstanding. Kind of surprising, but not really bad news. Of the schools HSS has been accepted to, two are state schools (UM College Park and UMBC) which have great engineering programs. Plus they have the advantage of 100% of their tuition paid for by the college saving I started paying into about 13 years ago. The third school, Drexel, also has a great engineering program and has given HSS a $10K merit scholarship - $10K doesn't make a private school cost the same as a state school, but it's a start.

So now it's time to make decisions. Tomorrow I drive to College Park at 5:00 pm (anybody who knows Washington DC area traffic knows what a bad idea that is) to take HSS to the engineering open house. We already went to the UMBC Welcoming Reception and Accepted Student's Day at Drexel. We are so close to being done with this whole application process, and I am more than ready to be done.

Oh, did I mention that my other high school student took a PSAT this year (as a sophomore) and my email is now flooded with all the colleges that she's signed up with to get more information? Guess it starts all over again before HSS is even done.

joy...

 

As flappy as we wanna be

Things were too busy and intense to post during the "Special Hockey Extravaganza", but I want to get one post up right away.

I continually struggle with msk's "functioning level" and where he sits on the spectrum. During the Special Hockey tournament it was hard not to compare him to all the autistic kids that were there. Definitely on the low side verbally, disconnected from the game, not really connecting with teammates who were reaching out to him... I know it's never a good idea to compare, but it's hard not to...

And then, on Saturday evening, at the end of the tournament, there was a dinner and dance. And there was msk joyfully listening to the band, jumping and flapping. And it wasn't about function and futures. It was about happiness and community.

There were lots of smiles and fingers in ears and goofiness. And msk fit right in. And it's a good thing.

 

Almost there

Today it's time for:

Emotional connections

After reading this post about the emotional impact of music by one of my favorite Aut-rent bloggers, I started thinking about how msk reacts to music. When he was about 4 or 5 years old we had a music box that sounded a lot like this one from You Tube.

The Entertainer by Scott Joplin on a wind-up music box

He would wind it up and listen intently. Then he would start weeping. Initially it alarmed me, but it seemed like something he wanted to do, so I wouldn't stop him, at least not right away. As he would listen and quietly cry, the melancholy aspects of ragtime, with it's lurching syncopation, would start to get to me as well.

When I was in high school, I played in a ragtime woodwind ensemble. I loved the sense of another era that ragtime had, while still feeling very accessible and real to me. After looking a bit more on You Tube I found another Scott Joplin tune that we had played that would have probably made me cry if it weren't for the fact that I was working too hard playing it. But that emotional connection that I felt, had a great deal to do with more than ten years of really serious music lessons at that point. Msk got those connections all on his own and when he was little more than a toddler.

Solace by Scott Joplin from the soundtrack of The Sting

I do have a point with all this. I know that msk has feelings, even if he doesn't have the words to explain or share them. I also know he cares about how other people feel, even if he can't understand their verbal or non-verbal indication of those feelings. I think that his emotional connection is much stronger through music than words and that his repeated playing of a song that touched him deeply was a way to feel connected to someone outside his immediate family.

Right now we are in the midst of reviewing some pretty intense evaluations of msk's neurological and speech capabilities. The results don't contradict what I know and love about him, but they are pretty stark in showing how great his challenges are. Thinking about his connections and feelings reminds me of his capabilities, as opposed to his deficits.

A new info source



Not Link, a link to a website...

 I received an email introducing me to Education News. Usually these types of emails are kind of spammy and introduce me to sites that I don't think are very relevant to my blog.

This site is actually very relevant and interesting. I enjoy online education discussions, but have found only a few sites where this happens. Inside Ed had been the primary place I went to discuss issues about Baltimore Education, but their paywall and new blog layout seems to have totally killed any commenting or discussions. Ed Week is another source, but I really feel like parents are not their audience so I don't go there that often.

Anyway, you might want to check it out, and on the right sidebar you'll see a link to the rss feed and the headline post.

Waiting

If we're waiting on five colleges that all say they'll send notices sometime in March, do you think it's too much to ask to have gotten at least one by the 15th?

Guess in is. Sigh...

Today was the day

Sometimes miracles don't really work out...

So msk had a big neuro-psych evaluation four weeks ago. Today was the day we found out (and had explained to us) the results. Think IQ and academic functioning tests from many different approaches. Think visual thinking, doing puzzles, reading, writing, following directions, remembering things, verbal, non-verbal, functioning... a complete picture by people who were used to evaluating people on the autism spectrum.

Life with msk has always felt like we were close, but not quite there. As if there was just a single key that would get clear communication, or behavior improvements, or social interaction, or whatever answer to whatever vexing problem.

• First it was just a matter of getting speech therapy to help him as a late talker.
• Then it was just getting him in a school that understood including bright kids with special needs.
• Then, if he could just be in a structured, ABA intense environment with teachers and therapists that specialized in autism.
• Then (actually several times with different tools), if he could just get an assistive communication device.
• Today, if we could just give him different ways to demonstrate what he knows and how smart he is.

So far, it's never turned out to be all that easy. I try to remind myself of that every time one of these situations come up. It doesn't work and I end up disappointed. Today, msk came across as pretty average in many ways - not intellectually disabled, not stunningly brilliant. He exhibited concentration problems to the point of adding a new diagnosis to his autism - ADD.

On the plus side all of the pieces make sense and they will help us find the right educational setting for him.

I know life would be less of a roller coaster ride if I would stop expecting an answer to just fall out of the sky. Easier said than done.

Words hurt

Today is the day to speak out against using the term retard and retarded. I have taken a pledge not to use these words and I will speak out when I hear them used.

There are a lot of stories about how these terms hurt. The best place to start finding these stories is at http://www.r-word.org/.

Personally, the R-word has hurt me. Msk has strengths and weaknesses, gifts and challenges. There are many different kinds of intelligences, and his rankings on these swing all over the place. Even in areas where he's most challenged, I'm thinking expressive language and social interactions, he is not a joke or an insult to be thrown around. When msk's classmates throw the term around at each other as a joking insult and then talk to me about how I feel about msk being retarded, I am hurt.

Inclusive education is a learning experience for all parties. One of the things I have seen is attitudes change about assumptions. But to move from changing attitudes about a specific person to a more general understanding, the blanket, hateful terms need to end.

Please go to http://www.r-word.org/ and take the pledge.

"You'll hear from us sometime in March"

Cardboard finger tapping

I am finding the wating for this month's acceptance and/or rejection letters nearly intolerable. I want to see actual financial aid packages. I want to lay all the data out. I want to figure out if I need to cash in some or part of my IRA to pay for this stuff. I want to have enough data so that I can ask HSS what she thinks about these colleges.And after the end of March there's the whole month of April to go back and forth between these colleges and make a decision.

There are lots of tough things involved in parenting. I guess making it through these two months is probably not the worst in an objective way. But more subjectively? I am not good at waiting. I can't stick big issues to the back of my mind until they can be dealt with. It would make sense, but I'm just not wired that way.

So I've got a month of stress and finger tapping and waiting. Checking the mail, getting HSS to check her email and waiting. And it means I'm also getting stressed about other things quicker and easier because I'm stressed to start with. That seems especially bad because msk's IEP and tests, tests, tests are ramping up this month. And stress is doing a number on my body as I round the corner towards the half century mark. And my aging parents = stress. And now the middle child is working on learing to drive = stress. I could go on, but listing these things = stress.

What a whiner I am. Sorry. Next post will be better.