When I was little, my parents took us to church every Sunday morning.  In my congregation, there was a very unique man.  He came every week and always sat alone.  When I say alone, I mean in his own pew.  He had an average face and an average body, but every inch of his face was covered in very large (I don't mean acne pimple sized either) bumps.  The front of his head, back of his neck, his entire face, completely covered in protruding, flesh-colored, giant bumps.  As a small child, I viewed this man not with disdain, but with curiosity.  He was very different from me and everyone around us, but somehow I admired him for his courage to come out into the congregation and feel a part of something bigger than himself.  In my eleven year old mind that is.  As an adult, I have thought about him, wondering what became of this man.  We know all too well that society shuns people who are different.  We look at them from a distance, not wanting to get too close, sometimes pitying the person, feeling sorry for their own personal Hell that they endure.  Many years later, I actually saw this man again, briefly, in a public setting.  I didn't have the opportunity, but if I had, I would have gone to him and asked him if he was the same man who sat "with" me in church all those years.  I never saw him again.  It's easy to wonder, did he ever get married and have children?  Did he work and if he did, what kind of life did he have?  Always on public view, taking in stares, gasps, whispers and the occasional sneaky look that someone thinks he doesn't notice.  Can you imagine this? 

Well, as an adult, I have psoriasis.  I have raw looking red patches on my forearms and part of my upper arms.  They are very noticeable and they itch constantly.  (Did I say they itched constantly?  Think fresh mosquito bites that never calm down)  When they first developed, my mom was suffering from terminal cancer (I don't see terminal cancer as an oxymoron anymore) and I was trying to work for a very nasty boss from Hell and parent two children with special needs.  As you can imagine, my stress level was off the charts at that point.  I usually wore long sleeves, even when it was too warm, to hide my psoriasis from the world.  One day, while out with my son and husband, we stopped at a local butcher.  A young girl was behind the counter, perhaps 19-22 years old.  It was SO hot that day, I decided to roll my sleeves up and "go for it", hoping that the world would be kind to me.  The VERY first thing this little princess said to me was, "OH MY GOD, what is wrong with your arms?!!!!!  Is that POISON?  (she didn't even bother to add ivy in there)"  I said that I have psoriasis and it's an auto-immune disorder.  She looked at me like I had leprosy and said, "Ew, is it contagious?"  My husband and son just looked at me, we were just speechless.  I almost called the store that day to speak with the owner.  I wanted to tell him or her about that little bitch and what she said to me, how she humiliated me.  I internalized what the girl did to me for months.  Ninety degrees outside?  Long sleeved shirt.  Period.  I still carry her nasty and hateful diatribe with me to this day, although it has softened some.  I still have the nasty rash, although this past Summer softened it some.  It's noticeable enough that when I'm in line, I know people see it.  I envision someone pointing to my arm and making a face with the person they are with, but I have short sleeves on now.  I think about that man and the lifetime of ridicule and shame he's put up with.  What can he do, put on a face mask?  There is no long-sleeved shirt for him, but there are plenty of young girls behind the counter who don't care what they say.

When I take my children out, which I don't do as often as I wish I could, there is almost always some sort of confrontation between them and me.  Most recently, I took my son to a local chain to get his hair cut.  As usual, he had his hand held game system with him, which if he could have it surgically implanted in him, he would.  I told him earlier that he would have to turn it off when it was time to go back and I didn't see the signs that we were next.  I told him abruptly that it was his turn and he was in the middle of a "battle".  He started with a high pitched, "NoooOOOoooooo!!!!"  when I told him it was time to go back and he started rocking a bit.  At around 5'7", his has a commanding presence for 13 years old and in this very small place, very large crowd, the stares began. One kid asks his mother, "What's wrong with that boy?" and I can feel my face getting hot from all the stares.  Finally, I get him calmed down and he hands the game system to me so he can get his hair cut.  The wonderful stylist took the time to add, "You know, I don't have all day to wait.  Is he going to get his hair cut or not?"  Why did I stay?  I don't have an answer for that.  Defeat perhaps.  I do sleep well every night though, knowing I did my very best as a parent every day. 

Out of the Mouth of Babes

I just realized how long it's been since I posted.  Truly, it wasn't from lack of material, but from a lack of how to approach this subject.  Today, I am approaching the subject of racism, coupled with the oftentimes inappropriately blurted statements that come from all children and in this case, my autistic son. 

I consider myself to be a person who enjoys a variety of humor.  I like everything from Chris Rock to Jeff Foxworthy.  I like white humor, black humor, Hispanic humor, redneck humor, jokes about marriage and children.  However, when it comes to racism, I tend to come to a screeching halt with the whole laughter thing.  Less than a generation ago, shows like "All in the Family" and "Good Times" filmed these sitcoms awash with racial undertones and America loved it.  Office jokes starting off with, "A black guy, an Hispanic lady and a Jew...." were met with roars of laughter.  Today?  Not so much.  I wonder if today's youth could even wrap themselves around the concept of blacks having to sit at the back of a bus, be lynched or beaten for even whistling at a white woman, let alone marrying her and giving her children.  However, there are many of us still around who remember it. 

Today, these things have changed in America.  Slowly, yes, but they have changed.  There is no lack of racism in existence, but there have been great strides towards equality.  In the doctor's office with A. this past week, we lost a bit of progress.

After his visit with the therapist, we went out to the check out counter to make our next appointment.  The lady at the check out and I were exchanging pleasant banter about how close the Thanksgiving holiday was.  I was remarking about how Black Friday was upon us and was hoping to find a deal on a TV.  A., without giving so much as a second's notice, blurted out, "What's Black Friday, when all the black people steal all the cars?"  You know those commercials for Twix candy bars when someone says something horribly inappropriate and they get to eat a Twix and think it over?  I can tell you firsthand that this is not an option in real life!  I just looked at the lady and said, "No he didn't".  I immediately turned to him and asked him where on God's green earth he would EVER get such an idea and he didn't have an answer.  I told him he most certainly did not get it from me and he agreed.  He did not know and I turned rather serious and told him that we were going to have a very long talk after leaving the office.  She said, "It's OK" and I said, "No it is not OK" (pleasantly to her)  I told her that I would never tolerate such feelings or ideals in my family and that she could rest assured that it would be addressed.  I realize that people slip and with a child with Autism, they may hear things and think that it's OK and blurt it out trying to make a "joke".  I don't think he even really understands the racism in his statement.  However, I did take the time to have a long talk, informing him that there are good and bad people within every race, religion and creed.  I explained that there are bad people who come from every walk of life and no single race or gender is responsible for the ways of this world.  I think he got it.

He showed remorse and embarrassment and for a child with extreme social deficiencies, this is a good thing, a great stride in his life.  I don't think he will be making any like statements in the future and I told him that if he ever hears something that he isn't sure about, that coming to me and telling me will not get him in trouble.  He may get a lesson or we may learn about something together, but I will never chastise him for asking. 

The next time we go to that office and we are checking out, I will make sure that A. takes the opportunity to apologize and let her know that he learned about people of all colors and that there is good (and bad) in all of us.  I would like to think that this world is changing for the better. 

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!

Bullies and Kids With Special Needs

I remember being bullied as a child.  I used to think that I "gave" them plenty of reasons to do it.  I had braces and back in the 80s, they weren't cool like they are today.  I was called, train tracks, metal mouth, people made choo choo noises when I came in the room.  Before that, I had buck teeth.  REALLY buck teeth.  People left carrots on my desk, OK?  Yes, they were accompanied by the "Hey, what's up Doc?" from the Bugs Bunny cartoons.  Then, I was really thin (and this was a curse?  I want to be cursed again!!!!) and they used to call me a Carpenter's Dream...flat as a board and thin as a nail.  The only good thing about being this tiny was being able to outrun anyone who was thinking about kicking my tail.

Then, I grew up and had kids of my own.  My oldest daughter had the same buck teeth that I did, except I think they may have been a little bit worse.  She was nothing short of tortured.  Sure, she has beautiful teeth now, but back then it was awful.  It's so hard to protect your children in these situations.  You don't want them to be called a baby for mommy coming in to protect them, but at the same time, telling them to try to ignore them or to not let it get to you isn't very helpful either.  What is a parent to do?  I can remember sitting in the principal's office when my now 22 year old daughter was in about her sophomore year.  Some bratty kid who had been threatening to beat her up forever made a go of it in the cafeteria.  Naturally, she had about 5 people with her and my daughter was alone.  M. was hit and put up a cafeteria tray to block the attack.  She defended herself as best she could and IIRC, at one point someone held her arms back so she couldn't.  She was suspended, according to their "Zero Tolerance" for violence.  What message does this send?  A gang of kids show up, restrain you, beat you and you put your hands up to defend yourself and YOU get in trouble?  We are sending a message to the bullies to go for it.  This girl was suspended for three days and when she came back, she threatened my daughter within the first five minutes.  Yeah, the three day vacation suspension worked!

Now I have two children with special needs.  Their personalities and social skills are very different from other kids around them.  They have a very hard time making and keeping friends and their peers and even their parents don't understand.  In fact, I can say that in some cases, the parents of these kids can be the toughest nuts to crack. Watching the news and seeing such heartbreaking stories of teens committing suicide because of bullying is unbearable.  Our children shouldn't want to die because of how others are treating them.  It shouldn't matter if it's because they are gay, overweight, have acne, whatever the reason these kids are being tortured, there has to be a way to turn this around.  I know that "kids will be kids" and it will never stop completely, but something needs to change.

I spent a good part of the day at a beautiful playground in my area today.  Schools were closed, so there were many children enjoying the beautiful day.  I had the pleasure of sitting next to a lovely young lady and she told me about a family member who was dealing with a severely autistic child.  It broke my heart to hear the same familiar issues, especially with the bullying that seems to be endured universally.  One word keeps popping up in my head when I think about this; education, education, education.  Sure, you hear lots on TV about Autism:  how prevalent it is, how many more boys have it than girls, how much research is being done.  However, do you really KNOW about autism?  Until we educated and inform people about what to expect, way too many people are going to continue thinking I'm a bad mother who can't control her child. 

The Joy of Shopping

Nothing says "Fun Family Outing" like taking the kids shopping with you.  I used to look at photographs of celebrities going to the store with a nanny in tow and would think, "Oh aren't THEY special.  They can't buy their $2800 Louis Vuitton bag without the help".  Then, I started taking A. out shopping with me and regretted not vetting more movie scripts years ago.  Oh wait, I never was offered a movie script!

Taking any child out with you to complete an errand is challenging for several reasons.  A)  They couldn't care less about what you are buying.  The only exception to this is a $300 shopping spree at the local toy store or a "Go ahead, get whatever you want!" candy store visit.  B) The aforementioned rarely happens and usually it's a trip to Target for new undergarments.  You can only delay the inevitable for so long by telling your child that we're headed to the store to buy you something!  Once they find out it's Fruit of the Loom and tube socks, the excitement quickly wears off.  C) Anything, even lying down motionless is more fun than shopping with a parent.

If I had a dollar for every time I've said such repetitious phrases such as, "If you don't stop carrying on RIGHT NOW, you're going to your room when we get home!" or "Keep it up and just see what happens when we get home!", my house would be paid off by now.  While threats help keep the illusion alive that we are in control of our children, they are usually only preventing the inevitable (see above photo).

So, what is an exhausted, busy parent to do?  Several things have worked for me.  Going without anything until they go to school for one, but we got pretty hungry and that didn't work for long.  Leaving them home with the other parent, a sitter or unsuspecting family member and then you just wind up spending too much money and lingering in the misses section reminiscing about when you used to actually wear those sizes and longing for those days (oops...tangent!).

What has worked for me is bringing along The Bag.  The Bag can be a special bag just for your child that is unique to their needs.  My daughter uses a nylon bag with stripes that seems indestructible, considering the owner.  Telling the child that they can bring anything they'd like along with them and letting them be in charge of picking the items out helps them feel in charge.  Also, if you decide to offer a 'reward' for good behavior, decide ahead of time so they don't think the Dell laptop is the reward for being good in Best Buy for 20 minutes while you pick out a movie for their sister's birthday.

While I can say with all certainty that I have not taken both children out together in the same store for a very long time (I don't have money to post bail), brief trips to the store can be successful.  If all else fails, follow through on the threat.  If you say you're going to leave the cart, leave the cart and go.  I don't advocate leaving your selections for someone else to put away, however I have spoken to enough cashiers, customers and store personnel over the years that they understand when a child is that out of control that you just need to go and it doesn't happen often enough that they have a person they've hired to just put away carts from unruly children and their freaked out parent, so it's all good.  Happy shopping!

Rain Man

A few years ago, I was sitting at the local Motor Vehicles office, enjoying the thrill of renewing my license.  There's nothing like sitting with incredible numbers of the unwashed masses to put a spring in your step.  Inevitably, as you sit looking at the number 132 in your hand as a soft, gentle voice says, "You're never going to called....ever", I mean, "Number 17 is currently being served", conversations of muted sarcasm about what a miserable experience we are all enduring ensue.  That day was no exception.  A woman, about 20 years my senior struck up a conversation with me.

She was polite, but nosy.  I tried to be polite in return and chatted about general topics of interest.  At one point, she asked me if I had any children and we talked briefly about them.  I wound up mentioning that my middle child, A., was autistic.  She asked if I had a photo and happened to have one on my cell phone, which I shared.  She said, "But, but he doesn't LOOK autistic!" then added, "you mean Autistic like Rain Man right?"  I resist the urge to chuckle or roll my eyes and look at it as an opportunity to educate someone who truly doesn't understand.

I explain that Dustin Hoffman's character was portraying a savant, who just happened to be Autistic.  While I think Dustin Hoffman was brilliant in his portrayal of also showing the repetition and perseveration of Autism, I think a great disservice was done, unintentionally, to the Autism community as a whole.  When the movie was released, practically no one, including myself, had a clue what Autism was.  After seeing the movie, Autism was a scary condition that would result in a lifetime of living in an institution, never having any semblance of a normal life and a very unusual attachment to a schedule.  While the latter part is pretty accurate, a lot of the dramatic events in the film are very savant-like in nature.

There are many commercials that pop up today regarding Autism.  I for one see several in my viewing area because of our proximity to Kennedy Krieger.  I do not know if they advertise in other markets, but I know they do here.  Also, Autism Speaks is another wonderful organization that advertises a lot as well.  There is even a Nascar race dedicated to them!  What I do think we are missing here is the opportunity to educate.  Telling people how many people out of a hundred will be diagnosed or how much research is being done is nice, but people watching these commercials who are not connected in any way with Autism have no idea what the heck it is.  Information is great, but education is the key.  Sadly, most people will come in contact with someone with Autism in their lifetime.  I say sadly not for the people who have Autism but for those who don't understand.  If you can take just five minutes to visit a site like Autism Speaks and learn just a tiny bit about people with Autism, perhaps there can be greater understanding about what makes these special, awesome people tick. 

It Was a Dark and Germy Night

Remember all those times when you would say to whatever deity that you speak to, "Please, just make them stop talking...just so I can hear this program/read this chapter/make this call".  Well, it can happen, but there is a price and the price involves gallons of orange juice, doctors, money you don't have and an inconceivable amount of tissues and laundry.  I give you, "The Common Cold".

At press time (ten minutes after they go to bed and the silence descends) I am about 60% certain that A. has a cold.  That 60% involved giving him a Benedryl, so I'm pretty sure.  It wasn't the typical 13 year old with a runny nose and wiping it all over his clothes and blanket.  This was the typical 13 year old with a REALLY uncontrollable runny nose and wiping it all over his clothes and blanket.  The first thing my mind thought of was Zicam.  Do I have enough and where is it? OJ?  Check.  Children's Motrin?  Check.  Loaner copy of Halo Reach?  Check. 

I will go to sleep early this evening, knowing that not only will I spend a good part of my morning trying to decide if he will go to school (A. has bad allergies and it's really hard to tell sometimes) and also making of list of all the things I'll need before the germ, that is most certainly seeking safe harbor in my sinuses at this point, yells "CHARGE!"  I actually hope I'm wrong, but don't tell my husband I said that (I don't want to give him any ideas).  Be well.

The Cookie

As I mentioned yesterday, Saturday was Flu Shot Day.  Not one of my favorites, but a necessity in my opinion.  It went pretty well, considering, so that's all finished for another year.  The afternoon finished on a note that would leave many on my father's street asking a question very similar to the title of this blog.

For those who are very vocal about the public displays put on by children, my son can really ruffle some feathers.  I have stories that would make your parenting toes curl.  There's the time, TWO days after 9/11 that my son turned all the lights off in my bank, while I desperately tried to excuse myself through the crowd in the roped off line to get to him.  (To my credit, I didn't know about the drive-in bank teller in those days).  Then there's the Egg Incident, when A was bored during the 30 seconds it took for me to put my purchases on the belt and he slammed a dozen eggs, in the carton, at our cashier.  Yesterday, we added "The Cookie Incident" to the list.

After getting their shots, they were fine and they went downstairs to play, which they did nicely to our utter shock.  The adults actually got to sit and chat and we heard each other speak!  I found out they were watching the newest War Of The Worlds, so I guess watching giant tentacled creatures disintegrate humans for their blood kept them engaged.  When it came time to each lunch, I thought I would treat them (treat is a word only children comprehend when used in the same sentence as McDonalds) and headed up to the drive-through.  I bought them the three cookies for a dollar, one bag for each.

A. frequently loses things and today was no exception.  S. was running around the kitchen eating her cookies and A. couldn't find his.  He got himself so upset that blood curdling screaming was the only way he could express himself.  I quickly descended into anger and upset, as my dad is in pain from a "growth" in his throat (that's another really long blog post) and A. decided to do this screaming in my dad's ear, which is also in pain.  I informed A. of several consequences he would face if he didn't cease and desist.  This whipped him further into a frenzy and the tantrum morphed into more screaming and a threat to run away and never come back.  Oldest daughter M. is there by now and she walks into the middle of the tirade.  A. is running outside back and forth across the street and proceeds to run out of visual range.  In the meantime, I am in my dad's kitchen, trying to discard all of the trash we produced and get ready to leave at the same time.  S. is going on and on about how bad A. is being and adding to the melee' of stress.  Finally, M. finds him down the street, producing an "F" word laced tirade on a beautiful Saturday afternoon with many of my dad's neighbors outside.  We finally corral A. into the truck and start heading home.  I am blood red with anger and warn A. not to speak to me at that point.  I get the kids home to watch him head up the stairs for a three hour nap.  He was very remorseful when he got up, but I realized at that point that the days of taking them both up there together are over.

Unless you've lived through the hundreds of these like I have, it can be very hard to understand how they start, why they continue and how to get these rages to end.  Also, having a multi-diagnosis like he does (ADHD, BiPolar Disorder, OCD and Autism) adds so many layers to the question, "What the Hell is Going On Here?", which is something I sometimes have to ask myself more than once a day.  I was standing outside talking to my dad while M. was chasing after A.  I looked at him and said, "You know, when I go out and I see families doing things together like eating out or maybe a commercial for vacationing families, I realize that that will never be me, never be us.  I'm very sad whenever I once again realize that those types of things will never be in my life".  So maybe the next time you hear a screaming child in the store and its ear-splitting sound annoys you, please don't "tsk tsk" too soon.  Looking the other way and trying to understand that there are a lot of reasons why that mother can't control her child and it will mean a lot to me.

Flu Shots, Yay!

Being at home with everyone having the flu is like making your own horror movie without a director or crew.  Last year, I experienced terror such as this.  We all came down with the H1N1 or "Swine Flu" as they were calling it.  Vaccine supplies were short and taking two children with special needs to stand for hours was out of the question.  What do you bribe them with?  "Kids, if you're very, very good in line, at the end you'll get a needle in your arm!"  Before I really had a realistic opportunity to get the shots, we all came down with it.  For 4-5 days, you become the parent you swear you'd never be.  Eating cereal right out of the box with your hands?  Sure, no problem!  Stay up until 11 PM and keep your pjs on all day?  Don't worry about it.  So, with these fresh memories in my mind, I head out this morning to get shots for all of us.  A family member is in the medical field and gives them to use every year when they are available.

So my kids have no idea that we are going to get shots, I have to tell them "A White Lie".  I reveal our true destination, but sugar coat it with, "We're going to Pops for a visit!"  I don't tell them that my sister has a lair with needles and vials of flu vaccine and that she's lying in wait for us to arrive.  

Happy Friday?

Oh, why the question mark you ask?  Well, it's all relative.  For those of you who actually receive money for what you do, today begins a two day celebration.  Perhaps you'll get together with friends, go out dancing, eating, take in a movie, sleep in, lounge around in your pjs all day.  The world is your oyster and you're ready to say Shuck It!  For those of us finishing up a 50 zillion hour week as the often monotonous "Stay At Home Mom", your hours just got extended with no school bus coming. 

Yeah, I know the working moms are R-E-A-D-Y and deserving of two days off.  Believe me!  I haven't always been a SAHM.  Between babysitters that gave me 3 hours notice and bosses who thought that kids weren't a "good fit" alongside their career, I've been down that road.  For those of you forking out $40K a year to day care centers to spend the day with your little darlings; I salute you, believe me.  However, in the world of parenting special needs children, the day care center isn't always an option.

Lots of people make comments to me like, "Oh, so you don't work?" and at that moment, I'm always grateful my mother constantly repeated, "If you don't have anything nice to say, don't say anything at all" and I'd also like to thank the school I went to for letting me know every day that I have to keep my hands to myself.  Otherwise, I'd be in prison right now and this blog wouldn't exist.  Yes, I still have to do all the things that every other mom (or dad or caregiver) has to do every day.  However, I have to do it without the benefit of enough money, time or patience.  (The patience part I threw in there hoping you wouldn't notice)  Did I mention I also own two of Satan's cats?  Nevermind, I'll save that for another time.

Back to the whole question mark thing.  Weekends can be the bane of my existence.  It's not always two days of "rest" for me.  Having children who thrive on structure can completely fall to pieces (along with their parents) during an unstructured, busy weekend.  Add to that a tight budget, no time alone for the happy couple and children who, when put together, are reminiscent of the Tasmanian Devil from the Bugs Bunny cartoons of yesteryear including the sound effects and you have a recipe for disaster.  Sure, I try the whole rentamovieeveryonewilllike and the often underestimated boardgamethatssupposedtobefunforthewholefamilyandwindsupthrownwhensomeonedoesntgettheirway, but I'm running out of ideas!  I'm hoping that one day, large groups of frantic parents will mob this blog and give unprecedented advice, saving us all from the dilemma in which we find ourselves.  In the meantime, I'm going to hit up redbox.com.  Happy Friday!  (I think)

Well Hi there!

I was visiting the site "Shit My Kids Ruined.com" today and got to thinking (and that can lead to SoooOOooo many tangents my friends!).  For years, I think I have worked on the same thirty pages of my book called, surprisingly "Why Can't That Mother Control Her Child?".  Considering that I never have more than about two minutes to myself on any given day, I figured that I would use them to start a blog.  So, here I am!  Looking at the pictures at SMKR.com had me laughing, actually regretting that I don't have a complete photo album of the extensive damage (the kids call it "artwork" and "remodeling" for some reason) done to my home over the years as well as the damage to my nerves and psyche. 

I put some thought into whether I wanted to be public or private and well, in this day and age, at least for now, I'm going to remain somewhat private.  I will pretty much refer to myself in the third person, hopefully not annoyingly so as "The Mom".  I have three children:  M, is 22 and she is as complicated as I, so I'll probably need to create some sort of series to introduce my children, kind of like how National Geographic does when profiling a new species.  A, is 13 and is the mental health firecracker of the household.  He's OCD, ADHD, ASD and BPD.  Yes, he's a walking acronym.  Most of my paper clutter is related to him.  S is 6.  She's a Princess Diva Fashionista and will sashay her way out of the room at the first mention that you refuse to buy her a new purse.  She is the six year old purse version of Imelda Marcos.  I share the blame but darnit, all those little purses are just so cute.

I am married for I think about 11 years.  I have this vague recollection of three nights in the Poconos drinking mimosas in bed naked after some stranger came in and put a tray on my (covered) lap.  I think I actually slept in until seven A.M and went out at night.  I had a pool (yes a pool) in my room and if I could have afforded to buy that room I would have. However, $300 a night is just not in my long-term budget, so that's out.  So, I'm on the East Coast, in a house that's WAY too small for all of us, making a go of things.

So here I am ready to post about Mom, Dad (or sometimes "R" as the mood strikes), M, A and S.  S also has ADHD and Developmental Delays and mild ASD, so the main purpose of this blog is to shed some enlightenment on what all these letters stand for and how each of them affects all of our lives.  I also want to shout from the highest mountaintop that it's OK to laugh.  So many times, we all tiptoe around these topics, believing that nothing could ever be funny about Autism and other issues and I believe we're wrong to think that way.  If I didn't laugh, I would have lost it a LONG time ago.  So I hope you will go along with me on my journey, my rants and raves, my amazement at my children, the resilience of my marriage and the unexpected regeneration of the last nerve in my body, which someone hangs on through all this.