Those Dreaded Questions

Hello readers! We've been out of contact for a little while for various reasons including a camping vacation. Life is starting to settle back into a routine as school approaches.

Speaking of school, we all know that the time will come when our children will have questions about topics that I, for one, don't particularly want to have to answer. Death, sex, why am I so different from everyone else...who actually looks forward to informing their kids about these things? Maybe lots of people look forward to these discussions, but I'm not one of them. Last night after Gus's bath this was the conversation that took place:

"What are these called?"

"Those are called testicles."

"What's in them?"

"Hmm...you know, that's really a good question for you to ask Daddy, since he has them too!...Daddy!"

Yeah, call me a wuss. I totally punked out of that one. So, DH came in and Gus started asking questions, that went fine until DH explained that testicles are involved with reproduction, "making babies," he clarified. "There are seeds in them."

"But I thought only women carried babies in their tummies."

"Uhh..."

At that point I had a compulsion to read MM her bedtime story and got out of there as soon as my legs would carry me. It's a good thing I remembered to open the door first or else I would have looked like a Loony Toon (but perhaps I looked that way anyway).

Later, I asked DH how he handled the questions. Apparently, Gus was pretty satisfied with testicles being some sort of seed machine and moved on to asking what was in his knee joints and where rashes come from. Maybe there isn't a need to panic just yet, but I've had a gentle reminder that the day is coming sooner than I thought. I'd better start getting some answers ready.

How have you handled, or how do you plan to handle, those uncomfortable topics with your child?

Asperger's Q & A

A commenter had some questions for me, and instead of responding just in a comment, I thought I'd post the answer here in case anyone else was interested. I may do this periodically if anyone's got a question that requires more than a couple of lines of reply.

Q: How old was Gus when you found out about him? Did you know before he was born? I ask this because I don't know how you learned to be so good with handling him. Was it all learning as he aged?

A: Gus was about eighteen months old when we noticed that he wasn't taking much interest in other children. I'd pick him up from day care and see him at one end of the play yard while the rest of the class was at the opposite end. At home when we'd take him to the park, he'd always gravitate away from other children. That was what gave us the first inkling that something was different about him. However, he had sensitivities right from birth. He was always hyper-alert and extremely sensitive to noise. I'm sure plenty of people thought I was a complete, overprotective psycho the way I insisted on total silence when I was trying to get him to sleep, but it was necessary. He was always fidgety and in constant motion - it's largely the way he processes information. Things like fine motor development were delayed, but since he was my first child, I had no point of comparison. I didn't think of anything as 'problematic' until that toddler stage. Another thing that tipped us off around that time was that Gus had been acquiring language and vocabulary at a remarkable rate, but then he stopped for a while. That was the point when we started to see a lot of tantrums, and I started having trouble managing his behavior. But once he got into Early Intervention and was given some communication tools, the meltdowns became much less of an issue. So to answer that part of the question, we didn't know anything before Gus was born, there were signs almost immediately after he was born, but we didn't definitively know that he'd need some special help until he was about 2.

As for handling him (I'm not sure I always handle him so well), it's all been a learning process, and I've had a great deal of help. One thing that made a big difference for us was that my husband and I made the decision that I would spend the majority of my time at home with Gus (and later MM). This allowed me to really learn who he is and how to meet his needs. In addition to that, we've been very lucky with the professionals who have worked with Gus from teachers to pediatricians to therapists. When Gus was in his uncommunicative stage, a parent trainer (social worker from our school district) worked with me to help me manage my own reactions to his behavior. The support of family and friends has been a great help, and the network of autism bloggers I've come across over the past few years has been wonderful resource for information and support as well. So I can't take all the credit for learning how to deal with the challenges of Asperger's - it's been a real group effort, and I'm always refining my approach because my amazing boy changes constantly.

I hope that answers the question! If you have questions or would like to share similar experiences with your child, please feel free to chime in! Have a great weekend!

Thankfulness Thursday

Good afternoon, reader! It's a beautiful, rainy day here but that will not stop us from being grateful that we're still breathing, right? Of course not! Here's what I'm feeling thankful for today:

• I am thankful that my finger is almost better (at least I'm telling myself it is because then I can ignore all the people who keep advising me to get it X-rayed). I've been able to get it out of the splint for long periods today. It keeps swelling back up, so that's probably not the best idea. Using it to type seems particularly problematic, but...well, take my word for it - it's almost better. That's the story I'm sticking to. Moving on...
• I am thankful that I am sometimes just as quirky as Gus. Not only does it help me to understand him, but it also gives me a good excuse when I do things that other people might give me strange looks for. The example would be how I spent part of my morning: gardening. What's weird about that? It was raining. Not just drizzling or pouring, but it was fully raining - drops bouncing off the blacktop and everything. My neighbor came out to get his newspaper and gave me that look that said, "what the hell is she doing?" I was planting. It occurred to me that a lot of people do their planting when it's nice out, but then complain when they get all hot and sweaty because the sun's beating down on them. Anyway, I planted some flowers that I bought this morning (before it rained) and transplanted my tomato plant. I found out that they are Better Boy tomatoes, by the way. It helped that we have a pretty deep overhang on the house, so I wasn't getting drenched, but I could see myself planting out back if it wasn't raining too hard as long as I had a raincoat and hood. What do you think? Would you garden in the rain or am I nuts?

• I am thankful for the Magic Tree House series of books by Mary Pope Osborne. I've learned some interesting things from these books. The latest Monday with a Mad Genius was all about Leonardo DaVinci.
  
  
  
  
  
  Osborne mentioned DaVinci's mirror writing, and now guess who's interested in learning to do that? Anything that helps my kids, who both have trouble with fine motor skills, to gain strength and control with their hands is a good deal. Sure, I'll be building confusion with letter direction at the same time, but really, let's just look at the positives for now!

Clearly, I'm feeling a little silly this afternoon, but a little silliness is good for the soul especially on a rainy day. What are you thankful for today?



Disclosure: This post contains an affiliate link.

Robots for Autism?

image from Wikimedia commons

My mother-in-law pointed me to the Today show this morning as they were airing a story on the use of robots to help autistic children develop social skills. I can certainly see some exciting applications here. The kids in the studies seemed to show a significant increase in interactions when working with the robots. But then I heard words like, "humanoid robots" and one engineer spoke about robots that could understand how the child was feeling (to a whopping 80% accuracy) by hooking the child up to certain types of sensors. I'm sure I've been watching too many movies, but smart computers always make me think of Terminator or Artificial Intelligence: AI, both great movies, but scary in terms of technology going a little too far.

I'm on the fence right now, but I'll let you determine what you think for yourself:

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I'm further wondering what happens to the kids on the spectrum who have no interest in electronics or robots? Also, I think the statement that got under my skin the most was toward the end when Nancy Snyderman commented that for kids who are on the higher functioning end of the spectrum, the use of these robots "may be the key to get a child mainstreamed." I wonder when we are going to accept these individuals as different and stop insisting that they behave like everyone else? Is it so much to ask that society meet them at least halfway?

Does it sound like robots might be incredibly useful in helping autistic kids to express their needs and feelings so that others can more understand them? Sure, and I think that would be a great thing. But it doesn't seem that these technological advances will do much to help autistics gain acceptance as they are. It seems to me like more squeezing the round peg into the square hole, just with more refined tools.

I'm quite internally divided over this and I will readily admit that I may be overreacting to this story. Is this extensive use of robotics a good thing for people with autism? What do you think?

Ritualistic Behaviors and Genetics

image from Wikimedia Commons

God (or Goddess or who or whatever you believe is calling the shots) has a sense of humor. I am convinced of this for many reasons, but today I think it is because when Gus was being formed in my tummy, God decided to take every quirk - from me, my husband, my parents, his parents, even our cats - and pile them into the boy who became known as Gus. No wonder the kid wakes up so often in a giggling fit - it's pretty amusing. We've got to be the poster people for why autism is a mainly genetic condition. I think we could also make a pretty good case for how some of the behaviors that are considered to be 'odd' in people with autism, may be more normal than the typically developed world wants to admit. If I had a dollar for each of the stimming behaviors I've seen in 'typically developed' people...well, I've never actually had such a large sum of money to handle, but I'll bet I could do a lot. Maybe pay off the national debt.

One of the things I seem to have in common with Gus is a reliance on rituals. Ritualistic behaviors - following the same patterns without deviation - are common to people with autism. But I think to a certain degree, they may not be all that uncommon to people without the autism diagnosis. I suppose it's all a matter of relativity and degree, like everything else.

When Gus was a baby we lived in a 2 story building at the back of a U-shaped courtyard. It was a pain when we had to lug groceries or laundry down the long walkway, but it turned out to be a huge boon once Gus was mobile since he had a long way to run before he could reach the road. Every time we went out, he'd take off down the path. But he didn't go straight into the road; there was a mammoth tree if he veered to the left a little, which he almost always did. Down the path, around the tree...One day, after MM was born (so I was significantly slowed with an infant) Gus snuck out of the apartment, out of the building and down the path wearing nothing but a diaper. By the time I caught up, I was frantic (he is frighteningly fast when he wants to be). But my neighbor had snagged him. He was sitting very calmly under his tree. If he ever varied his pattern, I can count the number of times on one hand. We lived there until he was 5 - that's a long time to repeat a ritual.

I also have some rituals that some people might consider strange. The one that got me on this train of thought was the way I prepare my tea. I drink a lot of tea and I am very particular with the way it's made. I tend to use the same mug because the size of the mug is important - it affects the amount of tea, sugar, lemon and water needed. I must have the precise amount of sugar - 1 teaspoon plus one packet of Stevia - and a sliver of lemon (about half an inch thick). I use loose tea, so since my mug is 16 oz. I use 2 teaspoons, and yes, I measure with an actual measuring spoon that I have only for measuring my tea. The sugar, Stevia and lemon (in that order almost always) go in the mug first. The only time I add these things after the water is when I go to a diner because they are deviant and always insist on bringing me a mug of water instead of just a pot of water and an empty mug so I can make my tea properly! I try not to be bitter about it. Back when I used tea bags, I used to let my tea sit for a long time before drinking it because I don't like it too hot. Now I set a timer because I learned I was over-steeping my tea. See? I can be flexible about this. But not much.

The point is that if my tea is not made just so, I may not be thrilled with it, it may dampen the experience for me, but I can drink it without getting too upset. When Gus's current routine of watching Arthur the minute he walks through the door is changed (like it was during pledge time for PBS) he gets very upset. And therein lies the distinction. It's all a matter of degrees.

Sometimes these rituals are useful. Our bedtime ritual makes it possible for Gus to go to sleep very easily. But if we deviate from the ritual, it can be a problem. I used to teach an evening yoga class on Monday nights. Every Monday night, DH would have a hard time getting Gus to go to bed because he spent a long time getting up to look for me. Double edged blades those rituals. They help me to remember things that my overextended brain would otherwise forget, Unfortunately, if I alter the routine at all I can really screw myself up.

Last week it was a nice day and I changed my normal pattern by going for a bike ride in the middle of the afternoon before I had to pick up my neighbor's daughter and then Gus. Usually I don't leave the house at that time because I generally chain myself to my computer screen. Everything was fine - I got back from my ride in plenty of time to put my bike away, grab a quick drink of water, put my keys and ID away, lock up and head out to the bus stop. Did you catch that? Good for you because I didn't until I reached in my pocket and realized that the keys were still hanging on the hook and I was locked out. Yeah, changing the pattern is not usually a good thing for me.

Some people think that the ritualistic behaviors should be stopped. While there is certainly something to be said for helping your autistic child gain some flexibility, I think that as long as they are not infringing on anyone else, they're probably okay. Many people have their little rituals. So the autistic person may just have more of them or be more intensely attached to them.

So why did tea lead me to a discussion of ritualistic behavior? Well, my routine is totally off right now because the kids are home on break. And Gus had a nightmare and woke me up last night, so I'm also a little more tired than usual (and clearly into making lots of excuses for myself). So I began my tea ritual and then got distracted by getting the kids orange juice. The water boiled, I grabbed my teaspoon and dumped the first scoop of loose tea...right into the cup. I forgot the strainer. It wouldn't have been a problem if there wasn't all that sugar, Stevia and lemon juice at the bottom of the cup. Okay, sometimes the rituals don't really work out.

Do you see any of your autistic child's behaviors in yourself? Do either of you have any amusing rituals you follow?



P.S. This post may be a little rambling and distracted, but I'm posting it anyway. Why? Because posting to this blog is another one of my rituals! Have a great day!

Thursday Thankfulness: Autism Awareness Day

Here we are again. This Thursday came around pretty fast.

1. I am thankful that it is almost Spring Break for my kids. Although it means a little more work for me, it also means we can all relax a little and have some semblance of fun! I hope the weather cooperates!
   
2. I am thankful for all the family and friends who may have never understood anything about autism in the past, but who have made the effort to understand because they care so much for Gus. The list is pretty sizeable, but y'all know who you are. A couple of those friends shared this YouTube video with me entitled In My Language made by an autistic woman, SilentMiaOw. As one of those friends commented, "It is very humbling." Thanks to H and S for getting this to me!
   
3. I am thankful for the community of autism bloggers and advocates whom I've come across over the past year. As they can probably relate, it's not always easy to get to support groups. Having a community of people who 'get it' makes a huge difference. Some of my faves:
   

   Adonya Wong
   

   Mia
   

   Maddy
   

   Emily
   

   Mary
   

   Bonnie
   

   And by the way, Bonnie will be hosting the Gluten-Free Twitter Party tomorrow April 3 at 9am, 1pm and 7:30 pm PST. You might want to check that one out!
   

Please share your thankfulness and have a great (rest of the) day!

Where Does Quirkiness End and the Spectrum Begin?

Last summer I read a book called Kids, Parents and Power Struggles by Mary Sheedy Kurcinka. While I don't typically read a lot of parenting books, this one stuck with me. Kurcinka talks a bit about temperament and personality types, and what I found most interesting was that some of the extreme manifestations of different types of behavior came very close to mild manifestations of behavior that you might see in a child on the minor end of the autism spectrum. For example, some traits that she discusses in her book are persistence, sensitivity and activity. There's a scale to measure if your child exhibits these traits at a high level or a low level. I remember reading and thinking that there seemed to be a pretty thin line between a highly persistent child and one on the spectrum who might be mildly obsessive. From her description of the sensitivity trait, I wondered where the separation was between a highly sensitive child and a child with mild Sensory Integration Disorder. It occurs to me that these distinctions are purely subjective. I have to wonder if this subjectivity, coupled with a culture that strikes me as obsessed with conformity and sameness, might be a factor in what often appears to be a sudden rise in autism diagnoses.

Years ago when I was in elementary school, I got straight A's, but I rarely paid attention, I often daydreamed, I sometimes got out of my seat for no good reason (one spring I used to sit on top of my desk trying to sun-bleach my hair), and I was often disruptive but not overly active. If I were the same student today, I might be diagnosed with ADD, but back then no one felt the need to classify me as anything. I was just a really smart kid who was probably bored and talked a lot. When Gus was about 18 months old, I noticed that he always seemed to isolate himself from the other kids in his daycare class, but being that I had a deep appreciation for solitude and little experience with 'typical' behavior for a child his age, I wasn't inclined to think of his behavior as problematic. My bigger issue was with his teachers who never seemed to be aware that he was at the opposite end of the play yard all alone.

The more I learn about the autism spectrum, the more similarities I notice between my son and myself, the more I question the validity of some of the things that have been labeled as 'dysfunctional.' I rock side-to-side; if Gus did that he'd be stimming. My friend had a lot to say and a doctor asked her if she had ADHD. Why couldn't it just be a simple case of her having a lot to get off her chest? When did every little difference become such a big issue?

I'm not suggesting that individuals on the autism spectrum don't need extra support because often they do. What they don't need is the stigma of being damaged in some way because of their differences. Maybe instead of trying to force these individuals to perform in a way that is unnatural for them, perhaps the world needs to do a little adapting to the fact that we are not all carbon copies of each other, nor should we be.