Somewhat delayed

I've been meaning to post this link for a while and realized I never moved it from draft to post - whoops. So, a little late, but still quite moving. And for a change of pace, it's non-autism related (although still disability rights and City Schools relavant).

If you're looking for an inspirational magazine article, try this one:
Baltimore Magazine - Helping Hands

If you're looking for an inspirational blog, look here:
Health, Interrupted

Argh!!!

Here's a post that is not even a little positive. It also is only marginally related to kids or school issues. I would feel guilty about posting it, but I'm starting to feel like nobody actually reads these posts (no comments for about 6 months), so really, I might as well post just about anything that comes into my mind.

I hate doing laundry - it's the epitome of being stuck in a loop - wash, wear, get dirty...repeat until it's time to buy new clothes.

In the interest of doing less loads and saving water I was a "early adopter" of an HE washing machine. You know, the front loaders that are supposed to be high capacity, low water. Even after doing my research in Consumer's Reports, I am screwed. A year ago we put in about 50% of the purchase price in getting the thing fixed. It's broken again. Same symptom. Generally getting electronics fixed these days is a bad idea and I'm beginning to see that high tech washing machines are actually electronics.

I have precisely 5 days worth of uniform shirts for the two schools that require uniform shirts. Laundry is not optional around here. Stinking trip to the stinking Laundromat on a Sunday afternoon. I am not a happy camper.

Life sucks, and the stupid, who knows how long it will take for the repair guy, appointment hasn't been made yet. Stupid...arrrrr....I'm so mad I can't see straight.

So there - I've vented, nobody cares, grahhhhhaaaaa.

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2-Oct-2009

Looking in the drainage sink, I think the out-take pump is clogged with wool fibers. I'm being cursed for that single hat that I felted, I fear. Now the question is do I need to take the pump out to get those fibers out or can I just push enough water and de-greaser through to get rid of the clog? Do I want to chance taking it apart, or should I ask hubbie, or should I call the repair man? Such an array of unpleasant choices.

I've got a problem with it...

I try to stay out of most of the political stuff related to autism if at all possible. It's not that I don't have an opinion, it's just that it seems like a distraction from the tasks at hand: 3 kids, 3 schools, IEP meetings, autism waiver, special hockey, homework, girl scout cookies... you get the picture.

Sometimes, though, it's just so over the top that I can't look away and move on. The Autism Speaks video above falls in that class. I could go through and refute the claims made about autism (I think my marriage is holding up well, I pretty much always get a good night's sleep...), but that's not what really bugs me. The real point isn't the generalizations given at the beginning of the video, it's the attitude that as long as someone is autistic, their lives, and the lives of those that interact with them, are a disaster.

As I said in previous posts, msk is definitely not "mildly autistic". He's not able to pass for normal and he has a lot of difficult behavioral issues. My family's life is significantly affected by his disability. Nobody who has met us would say that his is not "really autistic". Does this mean that I think of our lives as a disaster? Not at all. I love msk to his core, and as far as I can tell, that core is autistic. I love his impossibly intricate pictures that he can draw only because he looks at the world in a different way. I love his unwavering focus that is beyond anything a neurotypical could manage. I love his totally honest emotions - I'm never unsure about how he feels. There's much more in that vein, but I think you get my drift.

The first half of this video is permeated with negativity towards our current life. The goal espoused is to be different. The way I see it, is life is the journey, not the destination. With a focus on being "cured", everything msk does is now (when he's clearly not "cured") is wrong and depressing. That attitude requires constant corrections, without joy about his specialness, which is hard on him, and I think, just as hard on those working with him. One behavioral tech, working with my son for over a year, has never once talked about any positive aspects of msk beyond behaviors that she has changed. I really don't see how to keep productive work going with this attitude.

I feel bad about slamming this video because it shows the worst side of Autism Speaks, and not everything they do is negative. On the positive side they have a lot of great resources on their website. They provide support for parents, and a unified purpose and that purpose reduces isolation. But as the wave of autistics grow up, the autistics' perspectives must be considered. Even though msk doesn't talk a lot he knows and listens when people are talking about him. When this discussion is negative it hurts him. This video is hurtful, and just as I want to protect him from hurtful statements at school, I want to protect him from this video.

I guess when you come down to it, that's the problem that I have with it.

Seeing the up side of things

One thing I've been trying to do lately on this blog is to have positive posts or at least positive notes on negative posts. Sometimes it's hard to do when you're involved in conflicts and struggles.

On that note, I came across a post on NYtimes.com called In Praise of Autism (after reading a tweet from @autismcrisis). The basic concept is that the autistic point of view can be very valuable in higher education and in information technology. The article seemed like old news, but the comments were what drew my attention. There were several people who felt that the article ignored the desperate plight of "low functioning" or "severely" autistic individuals.

Here's my response to that viewpoint:
I am a parent of a significantly autistic child. I'm not sure what his functioning level will be when he's looking for a job, but right now his disability is very apparent and often makes his life difficult. It also severely limits many of the things our family can do together.

I totally disagree with the commentors here that say if you had a severely autistic child discussions of the value of autistics in the workforce are a waste of time. I want my son to be included in society and included in a mainstream classroom. For that to happen society must see the value of my child and his potential. The discussion of the value of the different viewpoints those with Aspergers bring helps our argument. Although there is extra work to include him, there is payoff. Even if my son doesn't enter the workforce, the kids that have been in class with him will be more compassionate towards their co-workers who are on the spectrum.

On the other hand, the continual demonization of autism and how it has ruined this or that plan or path is not helpful to us. When it's implied that autism has taken our "real" child away from us, why should society waste it's time on the dregs that are left? As parents of more significantly affected autistic kids we have to convince society to accept our kids and find value in them. That means we have to do the same ourselves. The next step is to strongly object when anyone tells us that autism is (and by association, our kids are) a disaster and the only solution is eradication.

Just to make it clear - I love msk for the person he is, and that includes the fact that he is autistic. He would not be the person that I love if he were not autistic. In a similar vein, I would not be the person that I am if he were not autistic.

You'll have days like that

There are good days and there are bad days. Today? Not so good. We started with a kind of prickly pre-adolescent attitude - hard to get out of bed, objecting to school clothes, grabbing the IPod and some agitated echolalia. From there a path was set for a bad day. Friday's are always a little tough - it's the transition to a different routine for msk that's the problem. It's not that he objects to being at home, it's just the worry of a change. Plus this was the first 5 day week of the school year. Corrections at school were meet with way more than the usual level of opposition and lots of repeated instructions. This culminated in our worst daily log this year by far. After that there was long afternoon of trying to get under Dad's skin (which msk is pretty good at). When I came back into the picture it was after an insanely stressed day at work, and I wasn't up for it. So now we're all having some alone/TV/computer time.

When you get down to it though, this is what pre-adolescent boys are about, isn't it? They're prickly, confrontational, too clever along with thinking they're even more clever than that, moody and full of outbursts. I'm sincerely happy that communication home via log sheets is open enough that I know specifics about bad days. There was even a solicitation for suggestions/ideas so that we can have a unified approach when dealing with problem behaviors. It's hard to imagine some districts being willing to listen to successful strategies from home as opposed to dogmatic adherence to the autism therapy theory du jour.


Here's hoping for a good weekend and a fresh start on Monday.

Back on track

This morning's post on one of my favorite blogs really made me stop and re-assess. Least Restrictive Placements (LRE), Free Appropriate Public Education (FAPE), inclusion, becoming a contributing member of society - these are common goals for parents of autistic school kids. We do the best we can and we wonder about the cards we have been dealt and the choices we have made.

Some of our tougher cards are living in a school district that is under a court order because of how poorly it's done in regards to special education. Having a child with a disability of a level that prevents "passing for normal" is another. Living in a large city with a necessarily large bureaucracy is yet another. Sometimes I get so caught up in problems and frustrations that I forget how well things are going.

In the interest of realizing that the glass is way more than half full I'd like to list some really great things:

• msk might be the only autistic kid in his school, but I've never heard anything but positive statements from staff and kids (excluding usual 10 year old boy stuff, which is actually kind of comforting because they treat him like a regular classmate)
• when we thought we were ready for a less restrictive placement there was skepticism, but nobody blocked us
• our team is willing to meet at our request about issues and listen to our concerns without getting defensive
• positive stories and amazing observations always make it into our team meetings - it might slow us down a little, but it keeps us focused on the idea that having msk around is a delight and not a burden
• our support system is awesome - older siblings and grandma who can baby sit so we get a night out, a state autism program that provides a tech for support outside of school (like aftercare for extra socializing time), Special Hockey for sports and teamwork, a nearby park for exercise and unstructured time

When we first started on this journey I wondered about changing school districts and I still get advice from people telling me we ought to move. Honestly I can't imagine it working out this well if we had had the freedom to move, or the money to pay for an expensive special ed private school, or if we could spend all of our parenting energy on one kid. Sometimes it all falls into place.

Ghak...

I just realized that along with the maturity I mentioned in the last post comes hormones. Hormones and attitudes of pre-pubescent boys are just starting to hit our household for the first time. Add to that the lack of verbal skills of an autistic kid. Jeeze, this should be a fun stretch.

I don't think anybody's taking resignations, so there's no choice but to live through it. Wish me luck!

New year's stretch

There seems to have been a quantum shift between the summers when msk was 9 years old and this summer, at 10. Behaviors that seemed eccentric in the past are now clearly out of the norm. Part of it has to do with that lanky pre-adolescent stage - he's just not that cuddly little guy anymore. Another part is that he's not as quiet and withdrawn. There's often a constant stream of rather loud replays from computer games, Youtube, DVD's and emotionally charged events from real life.

At the same time, this summer msk wanted to go places and be with people much more than he had the year before. A lot of this I attribute to his school year in an inclusion setting. Lots of teamwork and acceptance has made him enjoy the public. A trip to the funky little grocery store by our cabin brought my kid an amazing amount of joy and excitement. That excitement meant that blending in was out of the question. So it became a summer of transformation for me as well - no more quick, surgical shopping trips. I learned to look for opportunities to talk about autism, giving people the benefit of the doubt. Sometimes the annoyed/confused stares gave way to connections and kindness.

I'd really rather blend into the crowd. And then meeting strangers' attention with trust and openness is also hard for me, but then I think of the challenges that msk faces every day and I know I can push through my discomfort. His whole life is a story of perseverance through discomfort and confusion. All of our social rules and feedback loops are a total mystery to msk while at the same time they are so intuitive and obvious to us that his difficulties are incomprehensible. But he finds joy in existence and moves through his frustration. Now it's become clear that slowly, slowly, he is drawn to become a social being. Perhaps not in the center of the action, more likely tangentially observing, but he is drawn in. These are changes I never expected. We'll see what comes next.

Trying to hang onto optimism at the start of a new school year

So here we are three days into the school year and I'm already having to call on all my reserves of patience and diplomacy. I have to go through the whole mantra - "I believe in the public education system. I believe in the right of all children to receive a Free Appropriate Public Education. I believe that all children have the ability to learn. I believe that with powerful advocates, every child can be successful in their education." - Breath in, breath out.

Why on earth would you want to uproot an autistic child - you know, the ones who are looking for order and stability in a world that is way too chaotic and unpredictable? Getting through the summer was hard enough. Where neuro-typical kids are joyful about a summer of unstructured time, msk starts having anxiety issues in those final weeks of school. Too many parties, too much free time... changes are coming and that's scary. Then finding structured activities through the summer for an autistic kid who needs challenges and stimulation from people who are open minded enough to value an autistic kid, while at the same time having constant supervision and support. It is a nearly impossible task and it wasn't achieved this summer. Maybe next time.

Regardless, we made it through the summer and for the last few weeks there have been beaming smiles whenever the conversation turned to getting back into the school routine. We had a meeting with the new teacher and worked out a plan of action. We had sent letters praising last year's team and especially his aide. Last year the school funded her training to learn about autism. She made a real connection with msk. Honestly, she was a big part of the reason that last year was our most successful year since pre-school.

We practically begged for her to be sent back to help my kid. When she showed up we were ecstatic. Then another aide showed up and last year's aide was sent on her way. So basically the bureaucracy feels free to drop in a new aide without considering the problems this would cause or caring if any of the directly involved parties (the parents, the student, last year's aide, the school's special educator and principal) knew what was happening, much less had any input. At the least we all would have just liked to have known ahead of time.

The only thing I can say is there appears to be consistency. This was exactly the way we were all treated when it came to ESY planning (that I posted about here, here, here, here and here).

I guess City School's new goal of reaching out to parents is for parents of kids without special needs.