Cooking For an Army of Four

When I was growing up, we ate dinner at 5:00 every day. Everyone was present, no excuses. Once in a while Dad would teach a night class, which meant we ate Lean Cuisine and salad instead of the usual meat and potatoes. Or rabbit (that's a story for another time). We had a delicious, home made, balanced meal. We discussed the happenings of the day and bonded as a family. That was then.

The last several months found me frazzled when it came to preparing dinner. Ian is getting pickier by the day. Ainsley just gets an attitude once in a while that sends me through the roof. Steve is rarely home at dinner time, except on the weekends. And after school activities during the week prevent us from having regular sit-down meals. This goes completely against my grain.

I am learning to adjust.

No longer do I expect us all to be seated at the table at 6:00 with napkin in lap and a hearty appetite. I am grateful if I can get three-fourths of our family to sit for thirty seconds at a time throughout the meal. Napkins? HA! My kids use their sleeves, shirt fronts, and pant legs for cleaning up, if they wipe their hands and faces at all. Using silverware is NOT optional, even though fingers are easier to manipulate. It's a constant battle to teach and reteach the same mealtime manners every evening. And it's exhausting.

There is no wonder why, over the last several years, I have given up on gourmet cooking. Oh, there was once a time when Steve and I would never eat the same dinner twice in a month. Every meal was an experiment in tantalizing flavors, scrumptious textures and colors and glorious aromas.

Now I try to limit chicken nuggets to no more than three meals per week with sandwiches ... sandwiched ... in between. That is all about to change.

My girlfriends get together once every few weeks and make entrees in bulk, then take them home and freeze them. I envy that their children will eat just about anything that is put before them. While I have yearned to join their group, it just didn't make sense to prepare huge casseroles that my children will not consume (no two foods are allowed to be combined or touch on their plates, or all hell breaks loose).

Today, in a stroke of pure genius, I came up with an alternate plan. I am going to prepare as much of the weeks VARIETY of menus as I can in the next twenty-four hours, freeze some of it, and relax the rest of the week. No more McDonald's drive-through in an emergency. No more mac-n-cheese from a box. No more friggin' chicken nuggets!

My mother-in-law bought me a new programmable crock pot for Christmas, and I plan to use it as much as possible. The bread maker that I so dearly love, will become its best friend as they sit side-by-side on my counter humming and rumbling and baking delicious meals for my family. Ian and Ainsley will surely give each appliance a special name. They believe all inanimate objects can talk and should have names. They will probably be very unique ... like "Bready" and "Crocky". Their first task: to make chicken soup and corn bread for Steve, who has been knocked out by a winter cold.

Did I mention it was 81 degrees yesterday? Just thought I'd throw that in.

The weekly menu is planned. The grocery list has been made. Now all that's left is to get my butt to the store and start shopping, chopping, stirring, and savoring.

If later today you see fire trucks outside my house, you'll know I overloaded the circuits in the kitchen. Wish me luck!

The Greatness of Family

This is the face that breaks my heart. It is the face of sadness, fear, anxiety, and social withdrawal. It is the window to Ian's feelings of inadequacy, of being different, of being alone.

Ian's summer has been difficult. We've been using this time to try to determine which medication will treat his bi-polar disorder the best and have the least side-effects. We've seen plenty of those, from facial tics to stimming. Even he realizes things are different. He is scared.

There was a man in the first autism support group I attended 3 summers ago, whose son had severe bi-polar disorder in addition to his high functioning autism. When he would tell us about the monumental difficulties he and his wife had with their son, I felt so sorry for them all. The cabinet full of medication that must be administered precisely on time to prevent complete chaos from erupting was only one factor taking its toll on them. The father was exhausted, as was the mother, and the boy seemed to feel tortured within his own body and mind. At the time, I was grateful Ian only had Asperger's and sensory issues. I had no idea that my own family would one day face the same scenario. Strangely, I don't feel the same way about us.

When we first arrived in Denver on July 3, the kids were tired from the long drive, yet energized by the cool, dry air and soft backyard grass they had to run in at my aunt's house. They did pretty well for the most part. The next day, when we returned to the same spot after our family reunion at a park located close to Columbine High School (yes, the very one), Ian felt easily overwhelmed. The tic that caused his mouth and jaw to grind wreaked havoc on his sense of self-confidence, and he took refuge in a dark corner of the house to play with toys. At one point, he got into a scuffle with an older cousin over a nerf rocket. Steve had to physically restrain him from attacking the other boy. Ian started growling like a vicious wolf and scratched, kicked, and bit Steve. He was going over the deep end quickly.

I stepped in, slid my arm gently around Ian's waist, nodded for Steve to let go, and glided him slowly to the ground. After positioning him in my lap like a baby, I began stroking his hair and rocking him, until his body went limp. I wasn't about to let my son alienate a cousin over a piece of foam. The sooner he was calm, the less damage would be done. If there is one thing I have learned in 40 years, it is that cousins in my family will love you and accept you no matter what you do or how dorky you are - as long as you don't throw a punch. Ian needs to feel that kind of acceptance.

The rest of the evening went well for Ian. For the first time in his life, he stayed awake to watch the fireworks.

He sat in my lap on the cool grass, watching the colorful explosions, and thought they were the coolest things he had ever seen. Every once in a while he would squeeze my arm, partly out of surprise at the loud cracking and popping, and partly as a way of letting me know that moment was as special to him as it was to me.


Watercolor entitled: "Cool Canyon Morning"

Semi-annual Lose-It Day

The stresses of the year thus far have finally gotten to me. The new diagnoses, the constant monitoring of drugs and behavior, IEP's, car pools, meetings, laundry, discipline, planning, surviving. Day-to-day I think I have control of the things that cause most people to go postal, and then one day it hits me right in the face. Unfortunately, today it ricocheted back onto the kids.

A couple of days before we went on vacation, we spent an entire Saturday picking up and cleaning the house. For once, I wanted to come home from a trip to an uncluttered domicile. There is something really pleasant about that - and something really aggravating about coming home to a dirty one. The former makes for a relaxing return, the latter just pisses me off.

Well, in just 5 short days (less than that actually), this house has become a complete disaster. Toys are everywhere, which in my mind means there are too many toys. Boys Hanes underwear is in very strange locations because Captain Underpants has been sneaking into Ian's drawers and flinging the contents during battle. Cereal bowls are in places they shouldn't be (i.e., any place outside the kitchen) because my children pour themselves a bowl of Cheerios and then walk around the house with them, even though they have received instructions to the contrary. Listening skills seem to have hit an all-time low, and I am too tired to argue effectively for better communication and understanding amongst the four of us.

Monday I found out that I have sleep apnea. Go figure. The best I can tell, it has been going on since before I became pregnant with Ian. According to the report from the sleep lab, I stop breathing approximately 15 times an HOUR during the night. That means I stop breathing and then wake up about every 7 minutes. I HAVEN'T HAD A FULL NIGHT'S SLEEP IN OVER 10 YEARS!!! No wonder I am such a grump. And I thought my moods were affected by my challenging family and the moon, when all along it was lack of oxygen to my brain. Huh.

So, all of this, as well as having no chocolate in the house AND intermittent rain storms have caused me to lose my cool. Had I vented, ranted, and raved on Steve, he probably would have laughed, filled the tub with warm bubbly water, told me to get in and left with the kids for a couple of hours. He understands that with me the stress seems to hit all at once, really hard. And he forgives the stupid things I say and do.

But this time, the kids heard their mother go completely bonkers. Ainsley straightened up really quick and started complying with every command. She picked up her toys, made her bed, put clothes away, all in an effort to be allowed to keep her allowance for the week. Ian locked himself into the bathroom and refused to participate. I was stunned. Here I was, attempting to scream and bully my children into understanding that they must pick up after themselves, and Ian was smart enough to "just say no". He was testing me to see if I really would throw away the toys that were on the floor. This just made me even more furious. Insolence on top of blowzy care for the place in which we live! Intolerable!

The kids were spared the experience of seeing their beloved possessions hit the driveway in a Hefty bag, because my loving husband arrived home in time to help me see that I was exhausted, not angry. Our children are sloppy, but they are not criminally stupid. And every once in a while I am allowed to wish that our life was normal.

Almost immediately, I realized that this is normal.

After I put myself back together enough to face my children and apologize, they surprised me by seating me at the dinner table (Cafe Graham) and presenting me with a hand written menu (Crayola marker on craft paper), which listed several delicious choices that would be prepared to my own specifications (microwave-reheated leftovers). Steve served as Head Chef and Ian was Head Waiter and Sou Chef. He had an old cloth diaper draped over his arm, on which he proudly showed me the label on the new bottle of Heinze Ketchup. He even adopted a slight British accent, the elegance of which played well with his uniform of choice - underwear.

I guess what it all boils down to is this: even the person who keeps it together for the rest of the family is entitled to blow off a little steam now and then. Those who she spends 24/7 caring for and worrying about will still love her and let her stay, despite the mean things she has said in a monstrous rage, because that's what families do. And maybe, eventually, some of the lessons that were intended to make sense will start to sink in.

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.

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.