Is that an egg on your face, or are you just happy to see me?

I remember some very traumatic, life scarring, I mean interesting food store trips with my son when he was little.  Most people think I'm exaggerating.  The very first time I remember realizing that food shopping was going to be challenging was the day of "The Egg Incident".  My son was still small enough to sit in the cart facing me.  This helped because I could theoretically keep an eye on him.  However, there were times when I actually had to extend my arm to pick something up to put into the cart.  A would take this as an opportunity to strike.  Twisting his body around, he would grab whatever he could reach and throw it.  Cereal boxes, large, heavy cans of yams, apples in the bag (one by one if he had enough time to eat through the plastic), you name it.  So, eventually, I had to resort to putting all the items either on the lower rung of the cart (I was grateful to still be able to use my knees back then) or wayyyyyy in the back of the cart, precariously piled up as to not topple.   This limited the amount of items I could get and thus started the more frequent trips to the food store and preferably after my husband got home from work.  The carts with the little cars?  Fuggetaboutit.  No restraint belt in those things could retain my son and his escape would almost always be coupled by my screaming, "GET BACK HERE!!!" and running through the store after him.

So, here we are, twisted child with back arched and arms extended, me trying to race through the store to get everything I desperately needed and to get out of the store without broken merchandise, toes or sanity and get him back into the car where I could legally strap him in without repercussions.  I started putting all of my items on the belt to be scanned and you know how you see things in slow motion?  Well, I didn't have a plan for "The Belt".  He easily was able to wiggle over a bit and bend from the side and he picked up a carton of eggs.  Yes, my friends, it was the 18 pack.  Not jumbo eggs mind you, but a lethal amount.  If I could have jumped up in the air, Johnny Unitas style, grabbed the eggs and took one for the team I would have, but alas, it was too late.  As the eggs hit the cashier, I would later recall how grateful I was that no one had cell phones back then, nor did YouTube exist.  Although America's Funniest Home Videos around, not too many people sat around in the food store waiting for the $10,000 video to happen in front of their eyes.  However, I never realized just how completely eggs could escape the carton and slide down, all of them broken, down the hair, face and uniform of a cashier.  I don't know how many seconds elapsed between the time the eggs broke, the two of us staring at each other in shock and the time the crowd gathered.  I remember praying that no one I knew was in the store that morning, but I know my son was absolutely THRILLED with what he had done.  I think if he knew about knee slapping during extreme bouts of laughter, he would have done that too. 

I was lucky that day, believe it or not.  The cashier had three boys and was a well seasoned mother.  She was visibly upset, but not the "just kicked hornet's nest" mad I predicted.  Another cashier came with a roll of paper towels and thankfully, she had on a vest and sweater, which helped somewhat.  The manager wasn't as nice, but he tried to somehow remain composed, get my items bagged and took my payment.  I wound up returning to the store alone soon after to speak with the manager and I made amends with the cashier.  She no longer works for the store, but the times I actually showed my face there after, I was alone and we actually wound up having an inside joke, where she would ask me if I were alone and if I had any eggs in my cart.  It's rare though, to find such people in this world, when there are so many judgmental and nosy people.  However, I can smile now, remember her compassion and understanding.  I would never have expected it to turn out that way, but I don't feel so much like I have egg on MY face anymore. 

The Reluctant Trick Or Treater

I think when you take a holiday that is surrounded by intense social interaction, approaching and communicating with strangers, asking appropriately for free candy, mixing with large groups of strangers and scary visages everywhere and mix it with a child with Autism, well, at first I'd rather not.  Then, when I look through the pictures I have of the kids at Halloween and the absolute blast they've had, it's hard to not be excited for them.

I am one of those adults who is NOT into Halloween.  Truthfully?  I'd rather sit on the porch and see all the little ones come up in their adorable costumes and hand out candy to them.  Then, as it gets later and the older kids are out before heading in to get ready for the office the next day (well at least they LOOK that old sometimes), I can then slam the door, turn out the lights and listen to the curse me as I hide inside, pulling out the bag of good stuff I kept for myself.  C'mon, we all do it.  Mary Janes and Tootsie Rolls?  Take as many as you want kids!  Three Musketeers?  They're mine and if you want to look like that smashed pumpkin in front of the neighbor's house, just try to take them!!  Ok, sorry,  flashback to the sugar rush of '02.  I'm OK now. 

But seriously, I do it for the kids.  I don't like the darker side of Halloween and it's hard to avoid when so many really go to town with their property and costumes.  So, I like that early part of the evening when all the tiny ones are out.  A is 13 this year and frankly, I wish he would just say, "You know what Mom?  I'm only five inches away from being six feet tall, so I think staying home on Halloween would be best".  But NoooOOOOooo.  I won't get that lucky.  His best friend is like over two feet shorter than him.  I wish they could coordinate some bizarre thing together, but I'm sure this kid already has his costume ready to go.  S is six and I already found the requisite sparkling, satin and sequined monstrosity that is the Barbie crinoline, tulle, lace, bubble gum pink gown along with the flashing crown, sceptor and earrings and 26" beaded, hot pink necklace.  Good grief.  I'm thinking of using a cane and going as my future self.

The first year we lived here, I didn't realize that many people in this area turn their property into a house of horrors.  Yeah, the whole gamut runs here:  headless people screaming, coming at you with fake bloody swords, strobes and black lights with fog and sounds of people being killed and ghoulish laughter.  Pretty cool stuff if you're into it, but for a small kid, let alone an autistic kid, it can be a nightmare.  Hell, some of them scared me pretty good!

I think there are a couple of things you can do short of denouncing the holiday.  My son was absolutely horrified of the scary places.  I can understand that, autism or not.  These are the things we did to ensure that the kids have always had a good time:

• Have everything ready so there isn't a lot of getting worked up over things that can't be found
• If you are setting a time limit, take along a timer so you can have a visual reminder of how much time is left
• Let the child tell you what scares them and take it as it comes.  One thing might scare them but the next thing might not, but it probably will.
• Avoid obviously scary houses with large, lurking/hiding creatures and people crying and shaking as they exit the property
• When the child has had enough, timer going off or not, it's time to come home.  Carry them if necessary if you can swing that AND your cane. 
• Candy gets heavy in a very short time.  Have a "relief bag" to carry if their pumpkin or bag gets too full and use the time they are at the door to seek out nourishment from the bag.  Hey!  Parents need candy too!

Short of telling your kids that Halloween has been canceled, following some common sense approaches to the holiday can make it fun for everyone.

The Waiting Is The Hardest Part

An unusually serious moment for me...

Today, my dad is having a biopsy. About six weeks ago, he woke up with a sore throat and some pain in his ear. Like most of us would, he assumed it was a possible ear infection or maybe even a strep infection and went to the doctor after it seemed to get worse after a few days. He even went to an ear, nose and throat doctor. The man never even LOOKED in his throat. He prescribed some ear drops to my dad and sent him home. Five days later, no improvement, so he goes to see his primary doctor. She never even LOOKED in his throat. She prescribes an antibiotic "just to be safe" and sends him for an x-ray. The x-ray shows arthritis. So, he goes home, thinking he has to deal with it.

Another week goes by, now his voice is affected. He sounds 'warbly', like there's something stuck in his throat. By now, even though initially relieved that it was "only arthritis", I can't deny I'm not worried now. He goes back to the ear, nose and throat doctor and imagine that? He looks in his throat now. He spots a growth at the base of his tongue. A month has gone by and a month this thing has had to grow. They schedule a biopsy...for three weeks later. Well, three weeks later is today.

I'm one of those people who wears their emotions on their sleeve. I've tried to control it over the years; I really, really stink at it. I cry during certain commercials even and can barely even talk about my mom still without getting choked up. Granted, she just passed in Spring, 2009 from, what else, cancer, but it's just a part of me. I realize people expect me to be sad, but I know that my constant panic is overwhelming. I get tired of hearing (some) people say that "well, they can't be with us forever" (yes, someone actually said that to me), but that doesn't mean I'm ready to give him up just yet.

That brings me for a moment to my kids. The day my dad went to the doctor and found out about the lump, I did my very best to not blubber on the phone, but I did. So, I told my dad I would let him go and call him back later when I could compose myself better. My son was home and picked right up on my panic. This is where I completely lose all sense of what to do. When my mom was sick, I did my best to keep the worst of it from them. Even when we had their birthday party (they are born on the 25th and 26th of March) in my mom's bedroom, 2 weeks before she died, they didn't pick up on how bad things were. They just thought she was in bed, not feeling well. So, when she died, I had the hardest time telling them.

Now that yet again, someone they love dearly is sick, I don't know what to tell them. They are used to seeing him on a regular basis and now, for weeks, I keep telling them that he "doesn't feel well". Telling them what is really going on is a tough call. How much do we tell the kids? They know that their grandmother is never coming back and they talk about her all the time. It's hard enough hearing S say how she wishes "Mom Mom would come back for her birthday and give her presents" or how A mentions that "he misses her, but maybe he'll see her again one day". Of course S is six and A is thirteen, so there are different awareness levels going on. Sure, I hold out that teeny little piece of hope that it's some benign growth. Sure, it's possible. I also have to be realistic too. The thought of that wretched C word showing up in my life again makes me nauseous. However, at least today we are on our way to finding out the truth, no matter how much the truth hurts.

I wish I could hear from parents of children with similar challenges and hear how they dealt with these delicate and very scary situations. I feel very alone right now.

The Ties That Bind Us

Just like any other parent out there with a special needs child in the family, I like to seek out information, learn as much as I can and most importantly, make new connections and talk with other parents. It makes one feel not so alone when sometimes we can be very alienated. So, I found "The Squashed Bologna" and not only found a really great blog to visit, but also a great way to connect with other parents with children on the spectrum and facing other challenges. Looking forward to visiting them all. I hope you'll take the time too as well, because there are some awesome blogs on the list!

♫ I Want Candy♫

While the above rings true for pretty much all situations, 24/7 365, yesterday I was ready for a wheelbarrow of the stuff.  Yesterday started out like any other stress-filled day of chaos and disorganization.  My 6 year old, home with a cold and nasty sounding cough was home asking me every 4-12 seconds if it was time to leave for her doctor's appointment.  Thankfully, she waited until 5:45 AM to begin the questioning, so at least I didn't have to hear it that much.   Oy.

My son headed off to school at the usual and ungodly time of 6:18 AM.  Whoever thought of sending teens to school before sunrise and letting small children who get up at 4AM start school after 9?  End of side note.  Anyway, we settled into a normalesque (my new made up word for the day) routine.  I managed to take a shower and started getting ready and put a movie on for the little one, who was curled up on the couch hacking every few seconds.  Then...the phone rang.

It was A's school, calling to tell me he was in the nurse's office saying he had a headache and blurred vision.  I launched into analyze mode and tried to figure out what A's motive was.  First off, his younger sister was home, on the couch, eating all the Cheez-Its that should be his and watching cool movies, while he labored in the slave-like environment at school.  So, at first, I questioned it and told her to keep an eye on him and call me back.  Well, she called back.  He now claimed that his vision was very blurry, the headache extreme and he was dizzy.  I'm always slightly paranoid about the meds I give him, but they are very necessary to keep him on some kind of manageable level (It's a love-hate relationship with those wretched meds believe me).  So, it's 11 AM.  S's appointment is at 1:30.  I figure out there is no other way than picking up the husband and bringing him home to help out.  I hate, hate, hate, hate doing that.  We are tight enough money wise, but every minute he's not there, no pay.  Oh well, nothing I could do.

I call the office at work and they get him.  He makes plans to leave.  I go and pick him up right away.  I drop him off with S and head downtown to get A.  Traffic is horrible and we get to the train as the gates come down (naturally).  I pull up in front of the house, deposit A in the house and put S in the truck.  I steal A's lunch and eat crackers and a drink pouch (those things  are very difficult to put the straw in and drink while driving, especially without squeezing them hard enough to squirt the juice at you.  Who invented those horrible things? lol).  Diabetic coma averted, I get S to the doctor.  $136 later, she has a cold.  I could have stocked up on cold supplies for a year AND gotten a pretty decent crab cake dinner out of that, but hey, I can dream can't I?  So, I rush home and A is fine.  FINE.  Not one symptom and now he wants to go out and play with his friends.  Um, NO?  So, all four of us are now trapped in the house, me staring at A waiting for some sort of brain thing to start again, S feeling "fine" and running around all over, poking A and the two of them singing about butts all afternoon.  Nice.

The moral of this story?  Stress is not good for you.  I think on the way home from the doctor's appointment with S, I actually thought about stopping at a liquor store, getting a bottle of wine and coming home to drink straight from the bottle.  That or at least see if I have any anxiety pills left from the last crisis.  I manage stress horribly and I need to find a better way.

Groundhog Day: Real Life Edition

I think all of us feel like Phil Connors in Groundhog Day from time to time.  Every day, the clock wakes us up at the same time to start our day.  I've even had the same song wake me up from time to time, like on Friday when they play the ever cheerful, "Working for the Weekend".  I am more of a "Monday Monday" person myself, but I like being unique.  Thank goodness I've never woken up to "Babe, I've Got You Babe" but if I ever do, it'll be the "wake to CD" selection on the alarm clock after that. 

We all crave diversity in our lives.  Boredom, repetition, monotony can become our masters if we allow it.  Some guy named Claudian, in something called The Eutropian said, "Change or Die".  Well, I'm in trouble!  However, in the world of Autism, change isn't always good.  When you enter the world of Autism, you learn about how transitions become the bane of your existence.  People who have Autism, on the norm, do not like change.  There is one part of Rain Man that is very similar to what my son used to deal with.  For example, he became VERY fixated on the morning lineup on our local PBS station.  Every morning he would watch one show that would go right into the next etc.  The predictability was what he craved and even a change in sponsorship could be upsetting.  So, when it came time for the new Fall lineup, when a new show was being introduced and an old one removed, it would become terrible to endure.  He would throw violent tantrums, try to escape from the house, cry and scream for hours.  I know some people looking in from the outside would say, "Well, I never would have let him watch that much TV in the first place".  What you have to understand is that it doesn't matter what the activity is, it's the expectation of repetition that drove him, not the show itself. It didn't matter if I tried to buy a new brand of cereal or if they added the words "New and Improved!" to the box; change was very bad. 

Things have improved slightly over the years and now that A is a new teenager, he is a teeny bit more flexible in allowing things to change.  That's not to say that he doesn't rebel violently against change or completely fall apart if asked to transition from one task to another (most often from sleeping to waking!), but small change is a bit easier. 

You know that child who sometimes prostrates themselves on the ground (example picture in a previous post!) when it's time to go or when they don't want to continue on?  Well, don't be surprised if one day you see an older child doing the same thing, or maybe screaming or thrashing or running away.  The behavior can change on a dime too.  One second you are sitting there, gently telling your child that we need to finish up and get ready to throw our trash away in a few minutes and the next they are throwing trash all over, standing there yelling blood curdling screams of defiance, while you try to figure out the best way to diffuse the situation.  We're trying....BELIEVE ME we're trying. 

Feeding Frenzy

Did you ever notice that when you are frazzled, that your children pick up on this and feed into it?  I decided to put way too many things on my plate today, literally and figuratively and it all backfired just as suspected.

I think that any parent who works, stays at home or works at home has their hands full to begin with.  Throw in a child or two and it's hectic.  Throw in a few children with special needs and your head just pops off.  Well, that's what it feels it's about to do anyway!  Today, I wanted to do three loads of laundry, go to the home improvement store, stop at the warehouse club, eat somewhere in there and go to two food stores for specific things, come home to drag everything in and put it all away, tackle cleaning the fridge and make homemade chicken noodle soup from scratch.  Surprisingly, I got all those things done but only one load of laundry.  Why do we do this to ourselves?  Thankfully, my husband saved me from having to sacrifice my children on a stone slab by offering to keep them home while I got all this done.  AND when I got home and started to clean out the fridge and wash all the shelves, he offered to help get the job done.  Not bad, not bad at all.  Of course, that was probably good for about six months, but I'll take it!

My point in all this is that we all try to take on too much.  No matter what our stock in life, we all have to eat, clean, clean up ourselves and our surroundings, but in the end, we need to R-E-L-A-X.  I realize that it's a foreign word to most, when we are all so busy, out of our minds, trying to make ends meet in these uncertain times, we tend to forget this important little step.  Sure, I would love to be discovered by one of the hosts on The View and have her knee slapping laughing her behind off at my wit and immediately whisking me away to New York to be on the show and sign me up for a book deal, but hey, that's never going to happen, so it's to the laundry room I go.

I may be grouchy, yell a lot, sit around certain I'm moments away from a heart attack or stroke from the kids yelling, "WOW, that's a low price!" for the 8,000th time today, but in the end, I wouldn't have it any other way.  I raise my glass (of milk of course, since cleaning the fridge I finished the last glass of wine) to all parents out there, making a go of it.  I will also secretly raise my glass to tomorrow morning because in my world, MY time begins when the last bus pulls away.  I'll probably do those two loads of laundry I didn't get to today, but maybe, just maybe, I'll put my feet up for a minute or two.  I hope you take the time to too!