What is it about that Puzzle?

It doesn't seem to matter what anyone does with regard to autism, someone ends up getting pissed off. Today I am NOT one of those people, sorta.

Many autistics and/or their families are against using the puzzle piece as a symbol for autism. The rationale is that they believe those with autism are not a puzzle to be solved. Many feel a cure is not necessary. They are happy the way they are and don't appreciate being told they need to be "cured". I am thrilled for people who are that self-confident. It is an awesome state of being when one is that comfortable with him/herself.

I think many people are ticked off at the organization Autism Speaks, which has long been associated with the puzzle icon. They don't agree with an organization claiming to speak for them when it pushes one position that is predominantly dictated by people who are NOT autistic. I won't go into that argument right now, because it is a bitter and complicated dispute, which is not the purpose of this discussion.

I happen to like the puzzle piece as an easy way to identify my children's special needs. On my wrist is a bracelet with a single silver squiggly shape that reminds me about my purpose in life: making certain my children live a happy, healthy childhood that enables them to be successful, socially productive, happy adults. Whatever it takes to get them there is my job. The puzzle piece reminds me to think outside the box when frustration is high. It also reminds me to count to ten before doing or saying something I will regret. When they are not with me and I see it, I think of them; and that brings joy to my life.

But why a puzzle piece?

Because as children, autistics are puzzling as hell! Especially when it's your first and you don't know what typical kids do. But then again, it is probably just as perplexing to have a typical child first and an Aspie grace your family later. What I do know is there is a great deal of mystery for ANY parent trying to figure out how to help their child who is on the spectrum. So many symptoms are similar to other disorders. It is frustrating... but it is also rewarding when you start to put the pieces together.

Have you ever done a 1,000 piece puzzle and tried to find two pieces that are exactly alike? It can't be done. Where would the fun be if the pieces were alike? I challenge anyone to find all the Aspies in the world who have identical characteristics, interests, diagnoses, and quirks and put them all in the same room together. My point is this: every autistic person is unique and has different abilities and needs. Parents, educators, employers, friends, everyone who has an autistic person in their life need to understand they are dealing with a person who has challenges as unique as they are. Take the time to discover the differences. They are the keys to unlocking the answers for that individual.

Unless a piece is missing from a puzzle, there is a solution. I believe science will one day find the cause of autism. There is an answer. Society is already beginning to face the very difficult questions that this solution will cause us to ask: Is this a condition that needs to be cured? If so, how do we fix it? Chances are, there will not be one right or one wrong answer. Individuals and families will have to decide what is best for themselves, just as we have done on so many other social issues. It could get very ugly. I can see it as a voting issue in elections for school boards and presidents. Should we "fix" the people who are different? I like the idea of having options that are used wisely and precisely, not applied generically to an entire population.

Perhaps the most compelling reason for using the puzzle piece as a symbol for autism is that in the end, all of the pieces fit together. Everyone has a place in society; we all have our strengths. It really doesn't matter that someone has autism or any other diagnosis. What matters is that we help our children find their strengths, foster growth in those areas of special ability, support their interests, and help them find a way to take those interests to a level that will benefit others. Every person has an important space to fill in the scheme of things.

So, those who want to be pissed off about a symbol can do so if they wish. That's their prerogative. But it sure seems like a lot of wasted energy that could be used better elsewhere.

They Get It !!!

The stress of the holidays is over for me as of today. And what a joyful day it is! This year I agonized more over the changes we made in family rituals than anything else.

We did not make our annual Christmas Eve drive through the upper crust neighborhood to see the lights. Too crowded and very frustrating for children who are eager for Santa to come. Deep inside I didn't want my children to associate affluence and opulence with the holidays. It just sends the wrong message.

I worried the kids would be disappointed that they were only getting four presents each under the tree.

I severely curtailed the sweets that went into their little bodies this year. It's a shame I didn't do the same for me.

Rather than letting them run amok, stay up late, and sleep in even later, my children have been held fairly closely to their regular schedule - for everyone's benefit.

Our Christmas morning began like so many other people's did today. We got out of bed with great excitement. Ian checked Santa's cookie plate to make sure the piece of chocolate cake he left had been eaten. For him, this is the sign that Santa is real. Each of us then checked our stockings to see what little treasures the big bearded guy left us. Naturally, Ian and Ainsley wanted to get to the big packages quickly.

Each box brought squeals of joy, especially the two marked "from Santa". For the first time ever, when the unwrapping was done, no one asked "Aren't there any more presents for me?" Ian and Ainsley were ready to start playing. More presents would have meant a delay to the real action.

Neither of them expressed disappointment in any of their gifts. They were thrilled with each one.

One of the coolest parts of the day was the cooperation and sharing that took place. Not once did I hear, "MOMMY...Ian took my [whatever toy she wanted at the moment]!" The arguments came in the evening when it was time for baths and the kids didn't want to stop playing. That's just normal kid stuff, and I can deal with that.

I know much of this simply means my kids are getting older, more mature. But the difference between today and last week is astonishing. A little of that was pre-holiday anticipatory monkey business. I think they are beginning to trust the predictability of some things. They can trust the goodness in each other, in their parents, in the dude with the red suit, in most people. Being pleasant to others has its rewards.

Please . . . please . . . please last a little while longer . . . maybe forever?

Doin' the Santa Thang, Texas Syle!

Every year the teachers at Ian's school go caroling through our neighborhood. This is our third Christmas here, and last night was the first time we made it to the "parade", as it was called. Keep in mind that this time of year we could be wearing shorts and running around barefoot, or huddled under blankets sipping hot cocoa. Last night, there was a little of both. Around here you just never know how to plan for a parade.

A terrific friend hosted a party at her house, which happens to be one of the stops along the caroling route. There must have been over a hundred people in her home, and easily two-thirds of them were under the age of twelve. It was wonderful holiday chaos.

A few minutes before the teachers were due to arrive, we all gathered in the front yard with hot cocoa, beer, wine, pizza, and cookies in hand. Ainsley was so excited. Ian remained calm, even somewhat hesitant. Neither of them had ever seen a caroling parade before.

In case you were unaware of this fact, you should know that Santa does not do Texas in a red sleigh pulled by reindeer. No-sir-ee-bob! Santa rides in the BACK of a king cab pickup truck (I believe it is a Ford). He is surrounded by the cream of the elementary teaching crop - the best of the best. In order to accommodate all of the faculty who participate in this event, Santa's truck pulls a shiny red ski boat to accommodate the kareoke machine and additional choir members. The rear of his parade is brought up by another pickup truck.

Mind you, Santa is ever aware of the growing problems of obesity and tooth decay among our young children. He has adopted a no-sugar policy when he comes to our neighborhood. Santa does not bring the traditional peppermint candy canes enjoyed by so many other children around the world. To our children, Santa and his elves throw shiny Mardi Gras beads. Yep . . . I ain't kiddin'!

At first, Ian was not eager to approach Santa's truck. It had stopped right in front of where we were standing, but he was not going near it. Ainsley wanted to jump into Santa's lap and tell him what she wants for Christmas. He handed her some gold beads, and she just sorta stared at him, like he was crazy or somethin'. Then she told me she didn't want the beads, she wanted to ride in the parade sitting next to Santa.

And I heard about it for the rest of the night.

Eventually, Ian and Steve made it around to the teacher's boat and got some beads.

Then Ainsley wanted another cup of hot cocoa and marshmallows to drink on the walk home.

She also wanted to whine.

So we all sang "Rudolph the Red-Nosed Reindeer" to take her mind of her troubles. That just made her angry, because she wanted to sing solo. Apparently, the rest of us suck at singing according to her standards.

Throughout the evening,Ian held it together extremely well. No meltdowns. No early requests to go home. No overwhelming anxiety attacks. It was rough on Ainsley though, and she let the rest of us have it until she was ready to fall asleep some two hours later.

The formalities of the holidays are getting to her. She is ready for her presents. I know she is wondering why Santa came early to sing Christmas songs, and why couldn't he have brought her ballet stuff with him? It's all so mysterious. Ian is just goin' with the flow. He is doing his best to balance against Ainsley's need for an attitude adjustment. I think we're going to survive this holiday season after all. Or, at least, most of us will. ;-)

Monday was day one of pool construction at our house. Steve and I decided several months ago that a swimming pool would be a good investment in our children's therapy. The proprioceptive input from the water is excellent for calming them when they are out of control. The added advantage of being able to get good exercise year-round in our own back yard made it impossible to resist.

In just a few rainy hours, our back yard went from this:












to this:



















When Ainsley returned from school at 2:30, she looked out the living room window and said,

"Mommy, I don't want to have a swimming pool."

"Honey," I replied, "I think you're going to love it once it's finished. You'll be able to swim whenever you want to. Remember all those days last summer when you wanted to go to the pool but Ian didn't? Now if that happens, you can still go swimming in our backyard with me. And Ian can do the same when you don't want to swim. Or, you can swim together and have lots of fun."

"No, I really don't want a pool," she countered. "Here's what I want them [the guys digging the hole] to do: I want them to put the dirt back, and then put the grass back, and then put my swing set back. Then it will be perfect."

Ahhhhh, the beloved swing set. The one that rarely was used. It went two doors down the street to her best friend's house where she spends several afternoons a week playing. She has played on the swing set more in the last four days at Georgia's house than she did in the last month at ours. Ainsley has gone to great lengths to make us feel terrible about getting rid of her swing set. Every day, as often as is humanly possible, she reminds me that she wants it back.

I am fairly confident that by mid-February, both of the kids are going to be in that swimming pool every waking moment that they are not in school. I could be wrong ... I certainly hope not.

The one member of the family who is truly going to have a difficult time adjusting to the change: Sugar. The pool is taking up most of the space where she used to do her business. The new fence will create two very large side yards that she can use, but until then she has to go in the front yard. This does not make her happy. She held it all day yesterday until I took her for a walk at 4:15. Surely the dog is not manipulating me into taking her for more walks ... is she?

All I have to say to both of them is this: "Cry me a river, baby, 'cause we need the water to fill the pool."

Food, Glorious Food!

I remember when my children were babies, just learning to eat vegetables I had pureed in the food processor. Both of them were willing to eat EVERYTHING I prepared for them except two things: rutabagas and cauliflower. And really, can you blame them? I happen to like them, sort of, but to expect a child to swallow such strange flavors is expecting quite a bit from them.

Their willingness to eat certain foods has been inconsistent at best. I am told this is typical of all children. (Thank goodness I have friends with typical children so I will know what normal is when it peeks its head into my house.) Ian used to love green beans; then he hated them; now he will eat them if it means he gets dessert. Ainsley changes her mind daily, hourly, minutely depending on what she thinks will irritate her brother. They both love broccoli, especially if it is smothered in ketchup.

In case you were wondering, ketchup IS a vegetable. It is a highly processed one at best, but it counts.

Recently, I ran across a recipe for mock mashed potatoes. Why "mock"? Because mashed potatoes are very high in carbs that are converted to sugar very quickly in the body. For Ian this is especially unhealthy with his hypoglycemia. The substitute? Cauliflower! This is really wonderful stuff, and it's even better with a little freshly grated Parmesan cheese over the top. My children will eat these. They are not wild about regular mashed potatoes. Someday I'll tell them about my secret recipe; but that won't be for a very long time.

We had those special mashed "potatoes" tonight. The salmon I was broiling didn't cook in the time I had planned, so we sat at the table eating vegies. By the time the salmon was ready to be eaten, my head was throbbing. Fish was the last thing I wanted to see or smell. I passed on the protein portion of the evening's menu.

Then Ian said, with great concern in his voice, "Mom, if you have a headache, can I have your dessert?"

Steve grinned so loudly I could almost hear his teeth chuckling for him. I smiled and tried not to laugh. Ian knew I had made a very special dessert for those who had Happy Plates at the end of the meal - gingerbread!

"Ian," I began, "my headache is such that the smell and taste of fish is very unappealing to me at the moment. The taste of homemade gingerbread, however, might just help me feel better."

I realized after I had said it that my children had just been exposed to what may have been the only obvious double standard in our home. By definition, I had a Happy Plate: I had eaten everything that I had taken. I just chose not to take the main course. Normally, my children would be expected to try everything on the table and to eat everything on their plates for them to be considered candidates for a Happy Plate status and the subsequent reward, dessert.

So, how did I handle this quandary? I left the room to take some Advil and did not return until it was time to serve the dessert. By then, everyone under the age of 9 had forgotten about the Happy Plate rule. They just couldn't wait to get their spoons into the whipped cream.

Fill 'er Up, Please

Ainsley has been having difficulty getting to sleep. She used to be out about ten minutes after her head hit the pillow. Now she can't turn off her thoughts. Last night she came downstairs to get me after twenty minutes of talking to herself. I took her back upstairs and cuddled next to her.

She pointed her finger at my chin, like a gun, and started making a "glug, glug" sound.

"What are you doing?" I asked.

"I am filling you up with love," was her whispered reply.

When she finished, she put her finger-nozzle back in the imaginary pump, complete with clunking sound effects.

"Thanks for filling me up, sweetie. I never want to run out of love," I said as I kissed her nose.

"You're welcome, Mommy."

Then she closed her eyes and fell asleep.

The Black Glove

Ian never goes anywhere without a toy in his hand or pocket. When he gets up in the morning and can barely dress himself, he always remembers to stumble around his room until he finds the object of the day. Often it is a car. It used to be a train engine. Lately it has been a Lego creation, usually a Bionicle. But since his eighth birthday, it has been Darth Vader's black glove.

Ian likes to pretend he is Anakin Skywalker, the young Jedi who had yet to discover the Dark Side of the Force. Ian insists he has a robotic arm and must keep it covered by the black glove. He also continues to carry either a light saber or a Lego flier of some sort with the gloved hand. This makes him prepared to do battle or flee at a moments notice.

I believe the things he keeps with him give him stimming opportunities that are less conspicuous than hand flapping, finger tipping (touching thumb to each finger in sequence and back again), or drumming a beat with his hands or whatever object is near, such as a fork. He can manipulate these objects in a way that helps him stay calm.

Sometimes these objects have to go to time out because they have a tendency to distract Ian from tasks such as eating, homework, or putting his shoes away. Rarely does he go to bed at night without one of them held firmly in his hand. Although I have told him he may not sleep in the glove, every morning I find it in his bed, usually under his pillow. I wonder if he thinks by placing it there, the Tooth Fairy will bring Anakin a new arm.

Yesterday we decorated the Christmas tree. There was Ian with glove on one hand and Star Wars ship in the other. I insisted the glove must be removed when handling ornaments. So, he took it off to place a decoration on the tree, then he put the glove back on immediately. Every single time. And when he fumbled and dropped his Kung Fu ornament from last year, he didn't cry or lose control. He very simply asked me if I could fix it.

I am relieved that he has moved beyond Thomas the Tank Engine and Sponge Bob Square Pants. Tackling this very complicated Star Wars character shows tremendous growth. In fact, it reflects deepening ability to understand his own emotions. Perhaps the Star Wars movies and the way they address the complexity and power of emotions has helped him realize they are a very important part of life.

One day last week he lashed out at Ainsley for breaking one of his Bionicles. Of course, it could be fixed in seconds, but it ticked him off all the same. He punched his sister fairly hard, made her cry, and Steve was ready to hang them both up by their underwear. I took Ian aside, sat him on the floor in my lap with my arms around him, and had him take some deep breaths. After he was calm, I asked him in a voice just barely above a whisper,

"Do you think it was a good decision to hit Ainsley?"

"But, Mom, she broke my Bionicle!" he protested.

"I know, but do you think hitting her was the best way to deal with it?"

"Yes, and she should have to be punished!" he continued angrily.

"Ian, Ainsley broke apart a plastic toy that can be fixed very easily. You can probably do it in just a few seconds. And if you show her how to fix it, maybe next time she'll be more careful with your toys. The toy doesn't have feelings. When it broke, nothing happened. Ainsley does have feelings. When you punch her, it hurts her where you hit her. It also hurts her feelings, because it makes her think the toy is more important to you than she is," I explained.

He took another deep breath, and I felt the anger leave his body. Immediately, he got up and apologized to Ainsley, then began showing her how to fix it. Six months ago, he never would have gotten past the broken toy.

Each year everyone in our family gets a new ornament for the Christmas tree. Although the one I selected for Ian is probably the ugliest one I could find, I think it was a good choice for him. What do you think?