When Life Gives You Lemons

Welcome to the week from hell. Some days it doesn't matter what you do to make a difference, nothing will help because it's the weather's fault. It has rained every day for almost a month, and my kids have had enough already! Especially Ian. He has always needed sunshine to keep his moods in the happy range. Rain makes him intolerably blue.

The tricks we have for snapping him out of these moods are not working. Steve and I think the new medication, Geodon, has something to do with it. There is a new mouth-thing that he does, sort of like mouthing words he isn't saying aloud. He taps his finger tips together a lot now, something he never used to do. At the beginning of the week he seemed very stable and happy. Now he can jump off the deep end unexpectedly. When this happens, Steve and I look at each other, he rolls his eyes and I do the silent "oh, shit!" We take a deep breath and try to get Ian through this rant without any major damage occurring.

During the calm periods of the week - there have been a few - Ian and Ainsley have been playing with the Thomas and Friends train set almost non-stop. They build tracks and make up their own versions of the movie Thomas and the Magic Railway. Although neither of the kids seems capable of explaining why the sudden rejuvenated interest in this particular toy set, I have a couple of theories.

Thomas has always been a source of comfort to Ian in uncertain times. Before the initial diagnosis over three years ago, the trains were his obsession, the one thing he could talk about with authority. He could line them up and make them do the same thing over and over again. The Island of Sodor was his safe place. I remember one summer he begged us to take him there. We could not make him understand that it was an imaginary place, that it didn't really exist beyond the table in our playroom. He cried. He pleaded. He wanted so desperately to be among the trains that he understood and that most certainly understood him. I think that now, as Ian is experiencing chemical changes in his body because of the Geodon, perceptual changes of the world in what should be a calmer state of mind, and the uncertainty of a long summer with camps, vacations, down time, and the wonderment of second grade before him, Ian is retreating back to the Island of Sodor where he knows stability and comfort. Life is simpler there, and he can control what happens. Actually, I wouldn't mind joining him.

Now that Ainsley is not only interested in the trains but also capable of participating in the creation of stories, Ian has a ready playmate who is eager to please. She defers to his knowledge and goes along with his ideas most of the time. But get out of the way where Lady is involved. Nothing starts a fight between the two of them quite like possession of the "Lost Engine" who runs on gold dust.

This morning Steve and I heard quiet coming from upstairs and were unsure if this was cause for alarm or celebration. So we poured two bowls of cereal and took them to the media room where the kids were sitting in the dark watching "The Thomas Movie". As we were leaving the room, we realized they had started watching at the last 10 minutes of the story. Ian said it was so they could watch the chase scene. Oh, brother! Guess they needed a refresher so they could recreate the destruction for real.

Then Steve and I looked at each other, and both of us thought simultaneously, "We have 10 minutes. . .get downstairs. . .FAST!"

It's funny how you learn to take advantage of those moments.

On Not Being Normal

It didn't take long for life to get back to the usual around here. Ian and Ainsley have been playing well together, with a few arguments along the way. We took the latest diagnosis in, filed it with all the others, and continue to go about our life. No, we're not ignoring it. But there also is no point in making the diagnosis a star. It is a word, a state of being, a description, and it is under control with medication.

So the kids have been taking swimming lessons every morning for the last two weeks. Ainsley does very well and hates to see her half hour lesson end. Ian hates taking swimming lessons. The other children don't want to be his friends, and that makes him sad. I explained to him that swimming class is not the ideal situation for making friends because the class is very short. During that time, each child should be focusing on the instructor so he/she can learn as much as possible. That explanation didn't help him much. His self-esteem and confidence are very low, and his challenges are like beacons when comparing him to other kids his own age. The coordination and strength just aren't there.

It also does not help one make friends when one spends a great deal of lesson time barking like a dog. . .or getting out of the pool to hop like a frog. . .or lecturing the other kids about what it means to be a BFF (best friend forever). . .or licking the side of the pool.

The instructor is nice enough, but I don't think he had ever heard of Asperger's or autism when I told him about Ian on the first day. This guy might be 18 years old, at the most. He smiles and is patient with Ian, but he doesn't push Ian to try anything he doesn't want to. And that's o.k., especially if he hasn't a clue what to do if Ian has a meltdown. It would be nice to have Ian in a swimming program that better suits him. He could do well in different circumstances.

A couple of weeks ago, I was talking with a neighbor about a similar situation. A parent he knew was attempting to get his daughter interested in group activities. The daughter was clearly on the autism spectrum, but the father refused to acknowledge it publicly or to make accommodations for her needs. He pushed her into activities that frightened her and forced her to complete them no matter how terrible the outcome. Other parents involved in these activities observed how cruel it was, but none of them felt they knew him well enough to say anything to him.

I wish I had been there. As my husband knows, I have NO problem walking up to a parent and asking about their children - or offering advice. Yeah, I know. I shouldn't do that, but for the kids' sake, I can't stand back and watch parents belittle their children in public. When a parent forgets that their child's fears are very real, it's time for a dope slap. When a parent forgets that it isn't about them, it's about the child, that parent needs a time out. When a parent thinks that by forcing a child to do something he/she doesn't want to do that it will be good for the child, it's time for an intervention because HOMER DOES NOT UNDERSTAND THAT HIS KID IS DIFFERENT! It's o.k. to let your kid be different. It is fine if he/she doesn't want to be in Indian Guides/Princesses. It is not going to matter 20 years from now if your offspring does not make the varsity baseball team.

What WILL matter 20 years from now?

It will matter if you supported your child's true interests and talents and helped to nurture those strengths into something that means success to him.

Normal is so boring. Forget about normal. Just be.

Thomas and Friends Recall

Several Thomas the Tank Engine pieces have been recalled for lead paint. Please check the website for the U. S. Consumer Product Safety Commission for a complete list of the items that have been recalled. I was surprised to find that we have some of them. If there is a young Aspie in your home, chances are, you have some of these as well.

Autism Roulette

Well, it has happened again. Ian received a new diagnosis today. This time the winning co-morbidity is - bipolar disorder.

Some of those violent mood swings he has been having were probably related to his blood glucose level at the time; but the ones we cannot explain by bad food choices (hmmmmmmmm, such as cotton candy perhaps?) or his refusal to eat certainly fit the definition of manic-depression. I have known for several months that something new was developing because his behavior became erratic and explosive. It was scary at times. I am just glad we know what it is and that there is treatment available for it.

I stated early in my blog that children on the autism spectrum are likely to receive additional diagnoses each year. It's just the nature of the beast. Ian certainly has lived up to that standard. Also par for the course has been my own anger with the situation. It takes a few days of being really pissed off at the absurdity of a seven year-old having to deal with so much crap. It doesn't help to get angry when new information is placed before me, but that seems to be my initial response to grief. Next week I will see the label as a gift. It is not just a new element to the game, it is another opportunity to help him. Now we have more chips on the table and a better chance at winning a hand in this game.

It seems that the appearance of these new dimensions is random. Our process for naming them remains the same. A behavior develops. We deal with the issue on our own for a while. If our ideas don't work, we bring the problem area to the attention of the psychologist, who gives us strategies for helping Ian deal with the torrential emotional aspects of the problem. After that, if the difficulties persist, we present the challenge to the psychiatrist, who alters a medication dose, changes one, or adds a new one to the mix.

Still, I feel a sense of loss each time we learn of a new challenge Ian has to face. It's like having another part of him taken away. At least the shock is less now than it was in the beginning; but it is impossible to ignore the pain altogether. I look at his sweet face and wonder how much can he endure?

It is easy to see Ian is a happier child this week over last. He is more relaxed, less argumentative, more playful, more focused. Yesterday, Ainsley went off on a scream-fest about something, and Ian very calmly and quietly told her to calm down, take a deep breath, and relax. In recent weeks he would have screamed back at her, scratched at her like a cat, and had a huge meltdown. I was so proud of his reaction.

If it is true that we are each given the challenges in life that only we can handle, then Ian is Mt. Everest. He is so brave, so intelligent, so loving. He is a work of art, a tower of strength. Today I think he was put on this earth to hold me up, not the other way around.

Pay Backs and Nutrition Labels

On Sunday, my usual day for grocery shopping, I was completely wiped out. Ainsley has had adenovirus for over a week and spent most of each night tossing and turning with a fever in my bed. We were all pretty tired, actually. Although I am capable of doing the shopping alone fairly quickly, I thought it might be fun for the whole family to go along so the kids could begin to understand how I select food and why I choose the things I buy. They might even enjoy having some input, as long as their choices meet my standards. Steve wasn't thrilled about spending Father's Day afternoon at the grocery store, but he still owed me for Mother's Day, so I made him come along. Now we're even.

Ainsley chose to ride in the front of the cart, the part with the pretend plastic truck with 2 sticky, germy, steering wheels and crusty seat belts. Ian was the driver of this Suburbanesque carriage. I cringed at the thought of how many times I would hear, "Leonid, cleanup on aisle [blank]" as we bumped and crunched our way through the store. I am certain that Leonid hates to see me in the store with children. Perhaps that is why he always seems so happy to see me when I am shopping solo - he greets me heartily in his thick Russian accent and calls me "good customer", for as you know, good customers leave their kids at home.

We started our spree in the bakery, searching for whole wheat bagels for Ian. He had tried one at brunch and loved it - plain! How awesome is that?! Now that there are two dozen minis in the freezer, he will change his mind about liking them. We made it past the cakes and cookies without incident only because Steve was blocking the left flank, I was blocking the right, Ainsley was too low to see anything, and Ian was preoccupied with keeping the cart moving in a straight line. Whew!

On to produce. Now keep in mind that as recently as four years ago, being this deep into the grocery store sent Ian into an absolute hissy fit. Sensory overload killed his ability to make it beyond this point. I am tremendously grateful his progress has made it possible for him to get through the entire store in one trip. As we walked through the veggies, I explained to the kids that I always go to the organic section first and buy as much of our produce there as is available. Ian even asked what "organic" means - what a wonderful boy! So I explained that organic produce is grown without pesticides and chemicals to make them larger and prettier. I believe this kind of food is better for our bodies, and that is why I buy it whenever I can. Then Ian proudly helped to choose our fruits and vegetables for the coming week. He knew this is an important job, and he seemed proud to select just the right bundle of broccoli.

When it came to selecting cereals, I told Ian how to read the nutrition labels and to look for cereals with less than ten grams of sugar and at least three grams of fiber per serving. He was determined to find a chocolate flavored cereal that met my criteria. Ainsley found her cereal right off the bat - an organic peanut butter puff of some sort, even made with whole grains. Wooooo hooooo! Soon we were all involved in Ian's quest for chocolate something-or-other. Eventually, we found two and let Ian pick the one he wanted. He carried the box for the remainder of the shopping trip, devouring every word on the label. Not once did he ask to break open the box to try it. He wanted to read about "his" cereal.

Then came the cookie/cracker/high carb food aisle. We had to go down it to get graham crackers. They are a staple in our house, right up there with milk and bread. I usually buy huge boxes of them at Costco. There really is no super-size of graham crackers large enough to fill the need at our house. It's an addiction almost as bad as crack. Anyway, right above the graham assortment were the very small boxes of sugar free Oreos. These are great for bribing small children into trying new vegetables or finishing their dinner when interest has waned. I gave them the choice between these delicious chocolate sandwich cookies or sugar free ice cream. The Oreos won unanimously. I knew, however, there would be trouble in frozen foods regardless of the enthusiasm for cookies. On we trekked.

As we rounded the dairy case and gathered two-percent milk, skim milk, fat free half and half (now that's an oxymoron) and low-fat vanilla soy milk, Ian confronted the one thing he couldn't resist - fudgecycles!

"Mom, we have to get these," Ian said with hope in his voice.

"No, Ian, you agreed on Oreos. It was an either-or offer," I reminded him.

"But Mom, they have 'no sugar added'. It says so on the box," he countered.

"Maybe next time you can get those instead of Oreos. Let's go," I advised.

"No, Mom - see! You can get movie tickets for Surf's Up if you buy them now!" pleaded my desperate son. He began to read aloud the fine printed details of this extraordinary deal. It seems I needed to buy ten qualifying dairy products in one purchase to receive two tickets to the movie.

I told him I was planning to take him to see the movie anyway, so buying unnecessary dairy items that would spoil before we could possibly consume them all - and that we did not need, because hey, we've got Oreos and graham crackers - was a waste of money. The begging continued as my attempts to get us through the Antarctica aisle before the edamame beans in the basket thawed were growing bleak.

Then a beautiful voice called out, "Ian! How are you?"

It was his school's librarian, one of his favorite grown-ups. I know she is in his top ten because he actually talks about her at home!

"What have you been doing this summer, Ian?" she asked with great interest. And Ian began explaining how we needed to buy more butter so he could get tickets to see this movie about penguins and on and on and on. . . . She listened to every word so patiently and lovingly. I see why he is so crazy about her. A wonderful person who listens to what he says AND she is the keeper of the world's knowledge in hard copy - how much more perfect can one be in the eyes of a 7 year old Aspie? Well, thank goodness for Mrs. J, because she managed to get him on another topic and we were able to complete our shopping escapade without a single meltdown. I may have to send her some flowers.

Upon arriving home, Ian helped Steve put away the groceries while I played nurse to Ainsley's once again rising fever. It must have been the bacteria on the icky shopping cart. Those little buggers sure move fast. Steve glanced over at me with a sour look on his face.

"What's wrong?" I asked.

"That was not what I wanted to do on Father's Day." he said, disappointed.

I looked back at him with a raised eyebrow and a smirk and said, "Remember that next Mother's Day."

A Day for Dad

A few weeks ago, on Mother's Day to be exact, I was having a pity party. On that day I believed my husband had done a less-than-perfect job proving to me how wonderful he and the kids think I am. It is easy to feel unappreciated when you're the one who deals with the most youngster attitude, wipes three people's rear ends, washes the poopy underwear, is treated like Paris Hilton's personal servant, and gets beat up when angers flare. I know I am fabulous, but it's important for the rest of the family to acknowledge it with loads of wet kisses and praise at least one full day a year. A couple of kick-ass presents are also helpful in setting the right mood. This year my husband botched it big time. And he knows it.

Since one of my less desirable personality traits is that I tend to be a wee bit vengeful, Steve had to pay for screwing up the Holy Day of Motherhood. Once I have punished the offender, I will able to let go of my anger and continue on as if nothing had happened. It's a curse and a gift all wrapped up into a pretty little package. I decided that very day to make him feel guilty AND teach him how to show appreciation by making his Father's Day the best one ever.

It was a brilliant scheme. I came up with the most over-the-top gift of our married life. Everyone involved in the planning of it agrees that I have really outdone myself. You see, Steve is an excellent golfer; and since we became a family he has had very little time to play the game he loves. Usually, he makes excuses to stay home on the weekend rather than play golf, because he wants us all to be together. He rarely takes time to do things by himself so he can completely relax. And what exactly do you give the man who wants to play golf but doesn't take the time to do it? A golf club membership.

The beauty of this gift is that it is paid in full for one year. He can go as often as he likes and really work on his game. And, it is only for him. It is a single membership, not a family one. The golf course is his place to escape. A place where it's o.k. to hit things with sticks. A place where he can drive a cool cart around with a Bloody Mary in his hand and not get arrested for open container, following too closely, or speeding. A place where the grass is beautifully kept, and he didn't have to mow it or pay the watering bill (actually, he doesn't do the mowing at home either, but that's o.k.). AND, he got a free sand wedge with his membership. That was Ian's gift to Steve. Ainsley gave him a shirt from the Club's Pro Shop. My plan was to take Steve and my parents to the Club for Father's Day brunch. This was the mother-load of Father's Day gifts.

Once I put everything together, I was stoked. Only, the closer the date came, the more excited I was. . .for Steve. I knew he was going to love it. This was so much cooler than any of the other Father's Day gifts we had given him in previous years. In fact, this one made me realize just how lame some of them have been - like the white necktie with the kids' picture woven repeatedly throughout the cloth so it looks like a dizzying design from afar, but up close it is a really pathetic reproduction of our children's faces. Steve is difficult to buy for - mainly because he buys himself the cool stuff that he wants all year long and leaves me with no ideas when it comes time for special occasions. So really, it's his own fault that the presents we give stink.

Although my initial intent was revenge, I soon began to see the gift for what it truly was: an acknowledgment that my husband does so much for our family that is unseen or unappreciated. I don't always thank him for doing the dishes after dinner each night. For helping with the laundry when I get behind. For trying Brussels sprouts, against his better judgment, to show the kids that everyone should try something new once in a while. For doing the dirty jobs that really gross me out. For being a loving father who has the strength to say "no" to our kids when it is good for them. For having patience with Ian when mine runs out. For having his paycheck direct deposited so I can begin spending it sooner. It is that kind of thoughtfulness that makes me hope that he doesn't feel guilty every time he goes to play golf over the next year - unless he plays all day on my birthday or our anniversary.

After brunch at the Club today, Steve took Ian and Ainsley for a sunny ride in a golf cart. They splashed through puddles of rain that had accumulated while we were eating. When they returned to the Pro Shop, they looked at clubs together and checked things out. And for the first time since I hatched my plan, I hoped that the kids, Ian especially, might develop enough interest in the game to want to join their father on the course. Even if all they do is drive the cart, sip lemonade, and say, "Whoa, awesome shot, Dad!" Because every father deserves to be admired by his children.

Decoding the Mystery Of Autism

Painting has become a passion of mine, and I have my son's autism to thank for it. About nine months ago, I took my first watercolor class, and I have been hooked ever since. It's like a drug, like my morning cup of coffee - I gotta have it in order to function. Releasing the emotions that are inspired by the joy Ian brings to my life, as well as all of the turmoil, is a necessary part of my day. Paint and paper are able to take those feelings and help me create something meaningful and, hopefully, something beautiful.

One of the best things to happen over this artistic journey is the transformation of how I see Ian and how we relate to each other. His behavior makes me less angry than it used to because I spend more time observing him, less time giving commands. I photograph him more when he is being tender and loving so those pictures can remind me that he is not always seething with anger or terrified and anxious. Together, we spend more time holding each other just because, and less time doing "the squeeze" to help him recenter himself. Ian has become one of my favorite artistic subjects.

Over several weeks I thought about how to visually represent the truths about autism as I see them. The culmination of those ideas was completed today in the painting in the sidebar. I plan to sell prints of this painting and donate the profits to The Association for Science in Autism. I believe they are on the right track to helping families find answers - not guesses, not quackery, not false hope. We've had enough of those.

So if you like it and it says something to you, send me an email by clicking on my profile. I'll be happy to give you the details about how you can purchase a print. If my beliefs on the subject are too strong for your taste, that's fine too. It's not personal. It's just life.

Summer Storms

The last few weeks have been extremely wet in Texas. It rained for almost two weeks straight, then we had some sun and showers every day for a couple more. Now, although temperatures have risen into the 90s, signaling summer has arrived, we still see some afternoon sprinkles that remind us to be grateful for the goodness of rain.

With this odd amount of moisture comes some annoyances. Mosquitoes are eating us alive. They go right through the repellent and head straight for your jugular! They are savages! Ian can hear them coming at him, circling his head, and going in for the kill. He is convinced that too many mosquito bites will one day cause his death, so he prefers to stay inside as much as possible.

When it pours, the dry, cracked earth is unable to absorb much of the rain as quickly as it falls. The result is flooding. Where we are, high waters are very short lived; but they are fast and extremely dangerous. The kids and the dog are frightened by the thunder and lightning. The children can be calmed by letting them hide under the comforter on my bed. We can make a game of counting the seconds between lightning strikes and thunder claps. And believe me, there is nothing quite like the thunder that accompanies a good summer storm in the South. You can feel it rumble in your chest. Our dog begins to lose her mind when a storm is 20 miles away. By the time it hits our house, she has a full-blown panic attack that requires medication. I think she fakes it just to get the drugs.

The drought gave us nice dry air that made summer feel more like a clay oven slow-roasting our state to a deep golden brown. Rain has given us air that is 98% saturated with steam and sweat, and most of it is sizzling from the roof of my house. Stepping outside is like doing the Nestea Plunge into a pool of hot, liquid Jell-O. Everything moves slower. Breathing requires effort. The hair on top of your head gets plastered in the creases of your eyelids. There is really no point in applying makeup in the morning. By the time you leave the bathroom, it will have slid down your face, dribbled down your neck, and pooled in your bra.

The last month with Ian has been much like the weather. On cloudy days, he is depressed, argumentative, gloomy, agitated. He can't put his feelings into words, but it is obvious, to me at least, that storm clouds bring out his dark side. We have watched him melt down only to rise again in warrior stance, ready to strike down anyone who crosses his path. I often worry that he will hurt Ainsley, but she can probably defend herself fairly well. One of the difficulties is trying to help her understand why her brother acts this way. Seeing him gnash his teeth and hearing him growl, scream, and threaten scares her. Still, she wants to comfort him so he will stop. She knows he feels sick on the inside when he acts this way.

Small, unpredictable things seem to set him off. Everything will be fine, and in an instant he is accusing, yelling, hitting, biting - completely enraged over something he has interpreted as an assault. He was playing soccer at camp one day last week and was unable to appreciate the subtle nuances of the game, such as. . .the rules. He thought it was his job to keep the other team from scoring at all cost. So he would grab the other players and drag them away from the ball so they couldn't kick it. I believe some people call this "rugby", but even by those standards, he was being rough. Good sportsmanship is not, and probably never will be, one of his strengths.

For a kid who savors rules and ritual, he seems to feel smothered by the same. He doesn't want a routine in the summer, just wants to do his own thing. Hey, so do I, but that isn't going to happen. The other day we were talking about Father's Day coming up, and Ian balked at giving Steve a gift. He was angry at his dad for making too many rules and telling him what to do all the time. He wants to be able to make some of his own decisions, to have some privacy, to do things his way. We tried that one afternoon. We left him alone in the play room for about 10 minutes. Keep in mind that the play room also doubles as my art studio. I had begun a sketch, of which Ian's likeness was the focal point. When I returned, Ian had decided to "help" me by darkening the lines on the sketch. I mean really darkening them. A LOT. So much for giving Ian his space.

All kids go through phases, and summer seems to bring out changes in everyone. When you throw in a little autism with these seasonal hiccups, it just brings out the thunder and lightning that have been suppressed by the routines of the school year. The real kid comes out of hiding. The sensory overloaded time bomb explodes, and it leaves behind a big mess. Hopefully, this is temporary. Hopefully, each barrage will provide an opportunity to learn. Hopefully, these "opportunities" will occur within the confines of our home and not in the middle of Victoria's Secret while I am replacing my old undergarments. Thank goodness for internet shopping!

Who Needs the Metric System Anyway?

Ainsley:

"I am the Rule Maker. I tell everyone what to do. This is a ruler." [holds up an 18 inch wooden ruler]

"Mom, let's measure your arm." [looks discouraged because she doesn't know where to start and where to end]

"Hmmmmmmmmmmm."

"Let's measure your pinky. Your pinky finger weighs four and a half minutes."