No More Time for Illness

483px-Don't_Let_Sickness_Sabotage_Your_Work_-_NARA_-_534139I apologize for dropping off the face of the Earth the past several days.  I fell victim to a very swift-moving, nasty, nasty virus that felled our entire office, and continues to threaten anyone within its reach.  It is Day 4, and after having spent Days 1-3 flat on my back in bed, I have finally come out to sit on the couch.

My mom came over for a bit to take care of me on Day 1, making sure I had aspirin at regular intervals, Gatorade to drink, and a little bit of soup before she had to head off to work.  You don’t know how often I wished I’d had my mom to baby me like this when I lived up north, but it was never even remotely as bad as this.  She was worried about me.

The Man was the epitome of awesome, taking care of getting The Boy off to school in the mornings, packing lunches, making breakfast, stuffing backpacks, and also making sure I had Gatorade and anything else I needed before he headed off to work in the morning.

I slept when I could, moaned when I couldn’t. And coughed, and coughed, and coughed some more until my abdominal muscles were shredded.  I had a fever and chills, and just about every inch of my body was sore at one point, and my head increasingly began to feel like it was in a huge vice grip, clamping down on me from all sides, especially my face.

The scariest part for me was that I can remember feeling like I didn’t have control of my own thoughts – irritating pictures and snippets of strange and random songs kept flashing through my brain, and I couldn’t “change the channel”.  I couldn’t open my eyes for very long, because it took too much energy, and just the very thought of watching TV or reading hurt.

And then I realized I could hear the silence.  As an adult who has two burst eardrums in the past 15 or so years, I can tell you that when I get fluid buildup back there, the silence can be deafening.  Unfortunately it has remained, and here on Day 4, I have to wait and see what happens.  If it starts to hurt, I will need to take my uninsured ears to some doctor to get some uninsured antibiotics, I suppose…  and hope they start to work before the fluid ruptures an eardrum or two all over again.

In any case, I’m on the road to recovery, very thankful to have family around to fill in my gaps, inexplicably feeling a little guilty for dropping the ball (3 unpaid days off work!! *sigh*), but very happy to at least be sitting upright in my living room.

Time for a nap…

Guest Post: Squirt Guns and Opportunity

Kelsey, who wrote the piece below was first my student when she was in middle school, and then again briefly in high school.  I have watched her with her brothers and sisters, and have read some of the things she has posted on her facebook page, and have really kind of watched her grow up into this amazing, funny, incredibly caring individual.  Plus she cracks me up.  And she’s a really good writer, too.  Usually bloggers ask other bloggers to guest post to gain some new readers.  I asked Kelsey to guest post because I wanted to share her writing with you.  Enjoy. 😉

When Anna (wow, strange to call my middle school teacher by her first name) asked me to write a little something as a guest on her blog, I thought I didn’t know what to write about. …And then half a second passed by and I knew what I wanted to write about.

All she said was that she knew I had an interest in kids with special needs (I had previously used her as a reference when applying to a camp for children and adults with special needs) and that I could write whatever I wanted… so I did. Here is whatever I wanted:

About a year ago, I began working as a counselor at a summer camp that also provides weekend respites throughout non-summer months. All of the campers who attend these programs have special needs of some sort and their ages can range from 6 to anyone older than 6 who enjoys going to camp. When I explain my job to people, I usually just tell them that I get to play all day with my friends (and then at night, I specialize in getting them to brush their teeth when they don’t want to).

The first thing I thought about writing for this post was a story about this time when I was trying to engage a camper I was pretty familiar with. (We will just call her camper A.) She was pretty young and had come to most respite weekends that I had worked over the past few months, yet the things I learned about her likes and dislikes were limited to the fact that she liked to go for walks and that she quickly grew bored without one-on-one attention.

She wasn’t quite non-verbal, but she didn’t say much, and whenever I asked her a question, her answer was generally just “yeah.” Of course, her “no” was very defined when she was opposed to something, too, so I knew she had to have had some level of comprehension when I spoke to her… I just didn’t know where to place that level.

One day, while I was putting together the beginnings of a puzzle with another camper, I noticed camper A becoming agitated (most likely out of boredom) and beginning to upset other campers as a result. So I brought her over to the puzzle table to join those of us working, fully expecting her to sit and watch. To my surprise, though, she jumped right in and quickly assembled half of the puzzle on her own.

The thing is, you can’t “place that level” anywhere. Those of us who spend time with children (and adults, for that matter) with special needs KNOW that they are capable of more than the world sometimes tells them. Sometimes people who “just don’t get it” can be excruciatingly cruel in excluding them from opportunities because it is assumed that they simply can’t accomplish what “everyone else” can. That’s just hogwash considering everyone has their strengths and weaknesses to begin with, no matter which medical diagnosis you have tacked onto your nametag. But quite honestly, even those of us who know this best can be guilty of the same fault. After seeing what this camper could do, even with a simple puzzle, I realized that I was limiting her in other areas.

Therefore, when we sat down at the waterfront later on and I noticed her happily failing at firing a push-and-pull squirt gun, I didn’t let her continue on like I might have previously. I showed her again and again how to work it properly, part of me wondering if my attempts were futile… and low and behold, they were not. After enough demonstration and reminder, she learned how to properly work the toy and her squeals of delight grew and grew as she did it successfully again and again. It wasn’t that she shouldn’t be allowed to use the toy incorrectly… it was that not trying to teach her because I thought she wouldn’t understand was depriving her of an opportunity. (Of course, I eventually realized the monster I created when she began to soak my previously dry clothing… but that’s not the point.)

Through this job, I have met several young people who know they have what it takes to be successful- they just need some assistance. A lot of them also understand that many people in the world are not willing to give them the time and energy they deserve in order for them to reach their potential. Or rather, they know that this is a pattern… I can’t say that any of them understand it. And neither do I. It has been said time and time again that people who have disabilities can and want to do just as much as anyone else… and this is so, so true. But it’s not enough to parade that idea around on a button pinned to your t-shirt. It has to be actively practiced and enforced, even if you think you’re already doing all you could possibly need to do.

Even after this realization, I still find myself accidentally limiting campers in ways that seem so tiny and insignificant that it couldn’t possibly make a difference. (i.e. buttoning their coats or tying their shoes for them, simply because it’s faster if I do it.) However, I also know that rationalization to be a simple matter of trying to make myself feel better for these slip-ups. The reality of the situation is that even small limitations pile up quickly. It doesn’t matter if someone has been denied the education route they really could benefit from, or simply the chance to put together their own macaroni necklace. So many kids with special needs are told they can’t can’t can’t… and, most commonly, without being told anything at all.

Obviously, the solution to all of this would be for everyone to be perfect, so that helpers always knew how best to provide their help, be they parents, friends, caregivers, teachers, etc. In that case, though, those who needed help would also be perfect, therefore not requiring help in the first place. Maybe perfection isn’t what’s necessary here, though. Maybe a little reminder every now and then, on the other hand, is.

Summer Camp

Malice and Cowardice in Anonymity

I just read this article about an anonymous note written to the mom of a child on the spectrum, asking her to stop one of her children from playing and making noise, and stop her other child from staring at people out the window…  Eerily similar to the situation several months ago, with another anonymous letter to another mom of an autistic child.

I can only imagine my own emotions if I had received such a letter.  And I can imagine what I would want to do about it, immediately, ideas like:

  • anonymously write down a grievance for every one of my neighbors and tape them to their doors in the middle of the night, just to make sure everyone got a taste of how it feels
  • Take out a full page ad in the paper with a letter in response, or just a big middle finger
  • Grabbing a megaphone and walking up and down the street in protest
  • Taking my son to every house on the street to knock o the door and “meet the neighbors”

None of these, you notice, would be a very rational response.  But when you attack a person’s child, rational responses are the last thing you should expect.  Mothers can lift cars when their babies are in danger, after all.

640px-Envelope_-_Boonville_Address-002What strikes me about stories such as these is the cowardice.  Maybe it’s the influence of the anonymity (and animosity) of the internet, but people are too cowardly to attach their name to their grievances, especially when it comes in the form of a personal attack.  It’s because they know it is wrong, but they have such a selfish need to make everyone aware of their feelings (as if their feelings have more importance than others), that they have over-ridden socially accepted norms to vent those feelings.

We as parents to special needs kids need to be aware that these feelings exist, although the great majority of the people we encounter are too polite to ever say anything of that kind to us.  We need to tap in and feel that undercurrent of ignorance and irritation all around us.  We need to know it’s there so that when someone does slip, and they lash out at us in this completely inappropriate, malicious manner, it doesn’t feel like a punch to the gut.

I will never forget how awful an older woman made a four hour train ride for The Boy and me, before he was diagnosed, but not before he was a complete handful.  The whole time I was trying to control him, she sat behind us making disapproving noises and shaking her head.  I was simultaneously mortified and angry at her almost-silent judgement.

It isn’t right, and it shouldn’t be constantly on our minds.  But we need to know it’s there so it doesn’t catch us unawares.

Celebrities and Autism

Jenny McCarthy was all over social media this weekend, because somebody reprinted an old interview, and everyone had something to say about it.  I haven’t touched this issue on this blog, and I call it an “issue” because just the mention of Jenny McCarthy divides people in the autism community into very disparate camps.  I’ve said before that I think this kind of division can not only hurt our kids, but also any progress we are making in enlightening society, and changing the world for our kiddos.

And truthfully, celebrities can say whatever they choose, not because it’s a first amendment right (because that is not what the first amendment is actually about), but because media and all of society expect them to have something to say on everything, and even if they don’t seek it out (although I’m pretty sure Ms. McCarthy did), sometimes they are pushed to voice their opinions.

Of course, when you do voice your opinions, one must understand that others may disagree with you.  And because you are a celebrity, and therefore so removed from real life, they may do so in a less than charming fashion.  Even founders of large nonprofits are not immune…  ahem

I’m going to tell you right now that I have not read Jenny’s books (does she have more than one?), nor have I read any entire interviews.  I know that she claims to have had her words misconstrued, and misreported.  I have heard that she claimed her son had been “cured” of autism, and that now he may have not had autism at all.  I have heard that her book contained some outlandish theories about children with autism, something having to do with crystals… (??)…  As I said, I haven’t read it.  But I’m beginning to think I should.

I will tell you that I believe in science.  I believe in the many, many, many scientific studies that have repeatedly found no link between autism and vaccines, regardless of the schedule.  I believe that anyone urging parents to forgo vaccines for their children is dangerous to society*, and I believe the CDC, the WHO, and the NIH.

(*Vaccines protect those who cannot be vaccinated, but only if all who can, do: from the CDC website, “Immunizing individual children also helps to protect the health of our community, especially those people who cannot be immunized. These include children who are too young to be vaccinated (for example, children less than a year old cannot receive the measles vaccine but can be infected by the measles virus), those who cannot be vaccinated for medical reasons (for example, children with leukemia), and those who cannot make an adequate response to vaccination.”)

Autism has no cure.  It is a neurological disorder, not a disease, and not an epidemic.  It is not something from which you “recover”.

Autism is my son, and my son is autism.  I cannot separate them, nor would I want to.  Many adults with autism feel this same way, and they are much more entitled to be experts in our community than anyone else.

I believe we need to be more careful to whom we give credence. 

I believe we shouldn’t allow anyone to divide us as a community. 

I believe we need to understand and support good science rather than anecdotal evidence. 

I believe that we should be suspicious of anyone making money off of autism.

celebrate