Help Make This Blog Better

With my blogoversary only a week away, it is time to start considering my goals for my second year of blogging. So if you are a relatively consistent or veteran reader, please answer any/all of the following questions in the comment section:

• Which features do you find most useful on this blog?
• Which do you find most interesting?
• Which features do you find least useful/interesting?
• What topics would you like to see discussed in year two of Spectrum Siblings?
• What other changes would you like to see made to this blog?
• If you can recall, name (or describe) a few post which you found to be particularly interesting/well-written/insightful/useful.

Thank you for your assistance in making Spectrum Siblings the best blog it can be.

Manners not Morals

In the evenings at the triplets’  house, we sometimes have three adults and three kids, and I find myself working with the NT brother, Aaron. While the other two have goals for the summer such as: Learn 15 new signs (Josh), or Learn greetings and farewells (Lawrence), Aaron’s main goal for the summer is to learn to be more polite. After all, he is six, and the world of the six-year old revolves around farts (“tooting”), silly faces, and a need to always have the ear of whichever adult is currently busy talking to someone else.

But sometimes this can be difficult to work on. A major difference between the triplets’ parents and I are our morals. I’m from the north-east, they’re from the mid-west. We might as well be from two different continents. I’d never seen a gun before coming to their house, and they have moose heads on the walls and take Aaron hunting every weekend. They are strict Catholics, while I was raised Protestant but am no longer a Christian. So I have to be careful about what I say, because much of what comes out of my mouth is influenced by my upbringing which is naturally very different from Aaron’s. I remind myself before I work with Aaron that the focus is “manners not morals”. We stay away from topics like gun control and hunting, and on topics like tooting and discussions of bowel movements.

But in some scenarios, I’m not sure whether or not I should make a comment about his behavior or speech. For example, last night Aaron and I were (with his mom’s permission), playing the Sims. It came time for Aaron’s character to choose a wife, and I asked what he wanted his girlfriend to look like. He replied, “I don’t really care as long as she isn’t black.”

I was dumbfounded. I couldn’t decide whether or not the statement was rude, or whether it needed reprimanding. He wasn’t being racist; he was simply stating a preference. If he had said “all black people are dumb”, I would have told him off in an instant. But all he really said was that he found white women more aesthetically pleasing than black women.

I opted for a middle ground, saying, ‘Dude, that remark surprised me,” and then informing his mother of it when he was out of the room. If she decides to say something to him about it, I fully support that, and if she doesn’t, I have to respect that as her parenting decision.

After all, my job there is to teach manners, not morals.

But something about it just feels wrong…

Exposing my own Biases

We pulled up next to a van with two bumperstickers on the back, both advertising for autism awareness. My first thought: I have to find that mom, and give her my card (business card with my name, adress, and qualifications as a special needs babysitter). We were at the food court, so the plan was simple.

I started at the back and kept my eyes peeled for any kids exhibiting spectrum traits. I stored away four boys for the recheck, boys who were waving their hands in front of their eyes, staring at the ceiling fan, or playing with Thomas the Tank Engine trains.

I heard the man before I saw him. Making the noise that sounds like it would almost be speech if the lips were moving in sync. Then I walked by. He was a bit older than Carl, maybe in his early 30’s, and a woman I presume was his mother was enjoying her lunch with him. I smiled at the two (because that seems the best response when caught peering a bit too closely), and kept walking on to grab my lunch.

My own assumptions had gotten the best of me, which I suppose is at least partially a sign of how “awareness media” is being very careful about the image it presented. Seeing the stickers, I assumed they belonged to a mother of a boy, probably between 4 and 8, who would be immediately obvious in a crowd of people emjoying their lunch.

I’d like to say that this experience was the last time I make a thought error like that, but I doubt it.

10 Top Tips for Talking to your ASD Teen about Sex

I thought I would finish up the unit on sex and the ASD teen (covered here, here, and here) with some tips about the birds and the bees conversation.

1. Put it into the schedule: If you pull your kid aside during his scheduled computer time, he will spend the entire time thinking about his game, and none of his time listening to you. Try something like: 6-6:20, Mom talks about topic of her choice. This protects privacy, keeps the conversation timed, and offers your tween/teen the notion that you will be talking about something he might not be interested in, but he should listen anyway.

2. Have the conversation at an optimal time: Just after school, when stress is still running high, or  just as meds are wearing off, or right before the bedtime routine are all bad ideas. Think about when your child will be most receptive and plan for then.

3. Keep the conversation at their level: If your child is still using words like wee-wee, don’t use scientific terms to describe the body parts. Since the goal is understanding, confusing your child more by using words he isn’t familiar with will only make things more difficult.

4. Be more explicit then you think you need to be: Remember that most of your sex ed. probably came from your peers and using context clues in other people’s conversations. This is probably unlikely for your child, so you may need to add explanations you didn’t include for your neurotypical child.

5. Emphasize privacy of information: Tell your child he shouldn’t fear to ask you questions, but that dinner time or while babysitting younger cousins is not the appropriate time. Perhaps develop a code-phrase which will indicate to you that he wants to talk about a private matter.

6. Emphasize privacy of the body and its functions: Be very detailed about the privacy of the body. Explain that even if others are doing it, it is not okay to touch a girl’s body in public, especially without her consent. Also explain that you never talk about masturbation in front of other people.

7. When explaining consent, go beyond “No means No.”: Most girls are far more subtle then simply saying “No” in a loud clear voice like the movies and health classes suggest. Subtelty is not the Aspie’s forte. Explain terms that girls might use (“I have to wash my hair”) to let a guy down easy.

8. Use special interests to your advantage: Depending on your child’s special interest, this may require some creativity. If your child is interested in cats, watch a few videos of cats mating on the internet. Look for similarities and differences in the ways cats and humans mate (This would be an excellent time to bring up the issue of monogamy). If your child is interested in movies, watch a few movies with them that include a romance. Try to find examples where the guy did the right things (bringing flowers, complimenting her, waiting until the right time), and ones where the guys did something wrong (pushing her, manipulating her, continuing without consent).

9. Discuss time lines and patience: In most movies, the characters go from meeting to sex within one date. Explain that this doesn’t happen in real life, especially for teenagers. Ensure your child knows that it might be several dates before he even gets a good-night kiss.

10. Don’t think one conversation gets you off the hook: The birds and bees convo is not one you only have once, especialy with an ASD teen. This is a ton of information to take in all at once, and the combination of non-attention and slowed verbal processing means much of the information will go in one ear and out the other. Try and bring it up at least once a month, so the info stays fresh.

“I’m not upset that you lied to me, I’m upset that from now on I can’t believe you”

April, 1998. I’m sitting at the kitchen table flipping through the newspaper, looking for Ann Landers and Ask Abbie, who I read religiously every morning. The circular for Genovese (our version of CVS) falls out of the paper, and I give it a quick glance and return to my perusal for Ann’s advice on the latest argument with a mother in law. But then what’s on the cover of the circular registers.

• “Hey Ma?”
• “Yes Dear?”
• “Ma, why does Genovese sell Easter grass? Doesn’t the Easter Bunny have his own supply? And why is there a coupon? Does the Easter Bunny actually use money?”
• “Well, uh, sometimes the Easter Bunny runs out. And then he needs to get some from the store. “
• “But wouldn’t people notice him in the store?”
• “He sends one of his helpers.”
• I wait for a moment or two, pondering this. “Ma, I’m thinking maybe there isn’t an Easter Bunny. I’m thinking maybe parents are easter bunnies. And that means there’s no tooth fairy. Or Santa. Mom, is there no Santa?”
• She pauses. Tries to come up with a response. Bad decision.
• “Mom! Mom! Mom! Is there no Santa! Did you lie to me about Santa? You lied, you did! You lied to me all my life. Mom! I can’t believe you. How could you? Mom!!!! My whole life is a lie! You lied, and Carl lied, and all my teachers lied! Mom!!!!”  (A great deal of hyperventilating and tears accompanies this outburst).
• She tries to find a way to calm me. Distract me. Do something to make it stop.
• “And if you lied, and my teachers lied, I bet Cousin Bruce lied too! (Cousin Bruce was the name of my Sunday School teacher from age 3 to 12 or 13).  Mom, is there no God? You lied to me about God, Jesus, Santa, and the Easter Bunny! I hate you! Everything you say must be a lie!”

Eventually she got me calmed down. She convinced me that though she had made a story about Santa and the Easter Bunny so that I could better connect to the Holiday, that she did not lie about God and Jesus. She maintained that she only wanted to help me appreciate the holidays, and if she knew it would have hurt me this way she wouldn’t have done it. It was a very long discussion, and I wound up missing school that day. Then I had to be convinced that I couldn’t tell anyone else at school even though I knew all their parents were lying to them too.

It was a frustrating and anxiety-ridden experience for both of us. I’m thinking there must be a better way. Do you celebrate Easter/Christmas? Do you include secular symbols, and if so, at what age and in what way do you tell your kids that the secular icons are fake but the spiritual ones are real? Any advice for moms just going through the process?

Brownie Points if you can identify the author of the quote in the title.

Autism: A New Awareness

So, as you are all probably aware, April is autism awareness month. And if you ever leave your home, you’ll probably find flyers hung up just about everywhere broadcasting things like:

• Autism affects as many as 1 in 150 children and 1 in 94 boys
• Autism is the fastest-growing serious developmental disability in the world
• More children will be diagnosed with autism this year than with diabetes, cancer, & AIDS combined
• Boys are four times more likely than girls to have autism
• Autism has no cure!

There will mostly likely be a collection of exclamation points after each line, and possibly the web adress for autism speaks. No doubt there will be a puzzle piece or perhaps several on the flyer. But all this scaremongering does little to actually help autistics or the individuals who care for them. Sure, they’re raising  awareness, but not all publicity is good publicity.

If you are thinking about hanging up an autism awareness flyer, here are some things you might want to write instead:

• There are autistic people employed in every imaginable profession.
• Autism is not a synonym for stupid or retarded. In fact, many autistics have average IQ’s, and some have IQ’s far above the normal range.
• Autistics fall in love, get married, and even have children.
• With proper support, most autistic adults can live independent or semi-independent lives. However, the majority of states have little to no support for autistics above the age of 18.
• Autism is incurable. But when asked, many autistics respond that they do not want to be cured.
• Autistic children have a profound effect on their families. Their siblings are more empathetic, nurturing, and accepting of other’s differences than their peers. Their parents learn to enjoy life’s small joys, and celebrate each new development.
• Although their expression may be atypical, autistics can still feel emotions. Autistic or not, it hurts when someone stares at you, calls you names, or belittles your existence.

Let’s get the ball rolling on changing the public’s opinion of autism.

Autism: It’s not what you think.

Taking Tourette’s to Town

Here at college, I’m rather insulated from the rest of the world. True, I work at the library and volunteer at the outreach center, but those are both places filled with special needs individuals, so quirky behavior isn’t really noticed ot acknowledged. But I went home for spring break, and for the first time, my TS went with me (my symptoms were never really as evident as they are now).

Monday, I went shopping at a local dollar store for toys for Charger. I’m wandering about, performing the relatively new tic of touching both my shoulders simultaneously, each with one hand. I’m examining a Lightning Mcqueen coloring set, and an elderly woman comes up to me. “Honey, you’re doing it wrong,” she says, “it’s done this way.” She then proceeds to touch each shoulder with her right hand, and then make the complete Catholic sign of the cross (head, heart, both shoulders). She then smiled at me like she had given me the key to the universe, and walked on. I stood there for a moment dumbstruck and then went back to shopping.

Wednesday I was at the thrift store looking for some items to practice stringing and lacing. A little girl wanders over to me and giggles. I turn to look at her and she starts mimicking my movements and giggling more. I’m starting to get confused and she says, “Simon Says!”. We both laugh and I invent some new contortions for her to work on. Maybe it is poor sensitivity training, but I found the situation slightly hilarious.

Finally, over the course of the week, I discovered I may be able to make money in this terrible economy by selling the free things people offer me because of my throat clearing tic. Know anyone interested in buying a multitude of tissues, cough drops, or water bottles?

Do you/your child have visually observable differences? Any good stories about responses from the public/your reaction to them?

Knowing When it is time to switch doctors

Like most people on the Spectrum, change bothers me, especially when it means meeting new people. But sometimes it is simply a necessity, such as when you’re getting  inadequate medical care. After several disappointing visits, I’ve discovered it is time for me to switch to a new doctor.

Bear in mind while reasing this that my current GP is a pediatrician with a specialization in adolescents with special needs.

Wednesday, I go for a regualr check-up. I’m sitting in the examination room waiting for a doctor or nurse to come in and take vital stats. My ped walks by the room and yells out, “Who is making that obnoxious barking noise, and why are they on the well side of the office?’ Professional, huh?

A nurse comes in and is taking my vital stats. I’m clearing my throat as usual, and she says, “Oh, I hate it when I just can’t get the gunk out of my throat.” I smile and respond, “Actually it’s a tic; there’s nothing physically in my throat.” Her response, “Oh, well could you knock it off then?” Huh wuh?

So another 45 minutes pass and Dr. B comes in.

• “Oh, Cale, I’ve seen you’re really doing well with your weightloss.”
• “Oh, actually I’ve had a stomach virus the last 3 weeks; I’m not keeping much food down. I’ve been rather weak and fatigued.”
• “But you look so good! You should keep at what’s working” :0

Chat a bit more…

• “So, Dr. B, can you tell me why I’m making these movements/noises?”
• “Not really, no.”
• “Do you think it migh be Tourette’s?”
• “No. Absolutely not.”
• “Is there a different disorder it might be?”
• “Not to my knowledge.”
• “Do you have any reason to believe it’s not Tourette’s?”
• “No”. (At this point it dawns on me she doesn’t know what TS is. The giant redflag is the late onset, which would be a huge counterindication.)
• “Okay, so you have no other ideas, and you have no reason to believe it’s not Tourette’s, but you firmly believe that it is not, in fact, Tourette’s.”

The doctor excuses herself and is gone five minutes. She walks back in.

• “Ah, Cale, we have good news. We seem to have come to an answer. We think it might be a disorder that you may have heard of. It is called Tourette’s Syndrome. It is characterized by vocal and motor tics. You should have your neuro evaluate that possibility.”  :0!!!

And finally later.

• “You need your Hep A and PPD shots; do you want me to get your mom so you can hold her hand?”
• “No, thanks. I’ve had IVs in the past. If I can have a needle in my arm for  an hour, I can deal with a pinprick.”
• “Why did you have IVs?”
• “For the contrast for the MRI’s”
• “What MRI’s?” (I’m a chronic pain and migraine patient. I’ve had 3. She prescribed them all!)
• ‘The ones of my brain. You prescribed them.The write-up is in my chart.”
• “So do you want me to get your mom or not?”

I’m having mom call for the files this week and start looking around for a new GP. No one should have to deal with this nonsense.

Examining expertise

My mother likes to call me “her little expert.” I enjoy wowing her by offering medical diagnoses for the individuals on television before they announce them. I also like to listen to her descriptions of her days at work (as much info as she can give me due to HIPPA restrictions), and then tell her what I think their diagnosis is, and usually I’m right. And thus the “little expert” title.

But I was thinking about Carl today, and how he too is a walking expert. He can spell any word on the planet, can tell you what the matches were and who won in every Wrestlemania since its inception, can give you baseball statistics through the ealry 1960s, and can name every actor in a movie or every movie any actor has been in. The only problem with his expertise is that it isn’t a useful talent. Years ago, he could have been employed by a film critic to save the man the time it takes to look all the movies up or the books which contained the data. But in the internet age, suddenly everything he knows is available in the click of a mouse button. Moreover, there’s even more information available on the internet than one person could ever hope to store up. So regardless of how amazing his memory is, the internet’s is better, and ultimately more useful.

But I don’t think that should detract from his label as “expert.” He’s merely an expert without a purpose…yet…

Improving the Implement, not the Implementer

In first grade I had atrocious handwriting. Every thing I handed in would be handed back to me with a “do it again, and do it neater” warning. Because I completed my work rapidly, this could occur 6 or 7 times for each assignment. I hated first grade and would become physically ill each morning knowing I’d have to go back in and mindnumblingly copy an assignment I couldn’t get to look right, no matter how hard I tried.

Then one day the teacher came over to me and sat down while I was working. “Cale?” she began. “What in the world are you doing?” “Writing, like you told me to,” was my obvious response. “But your pencil is blunt! You can’t write with a blunt pencil!.” And she got up and sharpened it. And it had a nice little point on the end I had to admire. And then when I wrote, my handwriting was legible. It wasn’t pristine or typewriter-like, and it wouldn’t win any penmanship prizes, but you could actually read the words that had been written down. And from then on, I never had to recopy my assignments again. Because I knew the key. I had to have a sharpened pencil.

How many times do we think a child’s inability to perform a task is due to incompetency or laziness, when the actual fault is that the tool we have given them to accomplish the goal is failing them? Perhaps their speech isn’t improving in speech therapy because the therapist is using the wrong approach. Or their scissor-cutting is staying awful because we don’t realize they’re left-handed? Sometimes all the motivation and punishment in the world will do nothing if the child is not equipped to the tools for his success.