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.