The Autism Police

Don't you think I should know my children by now? All three of them? What each of them likes and dislikes and what works for each of their personalities?  I screwed up this weekend.  Big time. I will confess.  I did it.

I used to live in big, bad, urban Pittsburgh.  If I wanted anything I could find it within ten minutes, usually five. But now if I want to shop, I'm looking at a forty-five minute drive.  We found the mall website online and learned that it had something called the Rainforest Cafe.  It looked so cute on the website.  Here was the problem. When I heard "Rainforest" I heard "hippie."  I thought all the food would be organic and named after a sea turtle.  And we would have all re-usable plates, napkins, and eating utensils and look at some fish in aquariums.  Then some proceeds go to saving the rain forest.  All my environmentally conscious friends were going to be so proud of me.  Oops.  Major, major oops.

I am going to describe what we walked into, and my friends with children with autism, I can already feel you cringing:

• The main dinning room was pitch black with star lights on the ceilings and loud animal music going.

• The walls were covered with electronic animals that moved and growled.

• About every ten to fifteen minutes, a rainforest storm would break out.  The lights would flicker, the thunder would boom, and all the animals (gorillas, lions, elephants) would go crazy with the storm.

• What was intended to be the most exciting part of all-when the animals go crazy, the kids are supposed to get up and run around their tables, beating their chests like gorillas or  roaring like a lion.  Has anyone read Lord of the Flies lately?  Jack could have come running through the aisles with Piggy's glasses and a spear ready for Ralph's head.
•  Now for the final effect, here is a picture of the place I saw on the mall site.  Here is what I should have looked at with more detail.

My daughter calmly told me she needed to go potty.  We followed the rainbow (no joke) to the restrooms.  Once we were in there, she turned to me and said, "Yeah, I'm not leaving this bathroom. I'll eat lunch in here."  In the mean time, I can hear her brother jumping up and down like a wild man going "Oh yeah! Oh yeah! I'm a tiger grrrr."  Lovely.

I talked her into sitting on my lap and holding her ears. She screamed bloody murder until her father, who wanted to be there as much as someone wants a root canal anyway, took her out.  The manager brought me free drink cups and the waiter offered to help me to the car.  The place was ridiculously expensive so I hope my Lord of the Flies Litt'lun enjoyed his time on the island because we aren't going back.

You guys know I've been waiting for John Quinones to catch me on What would you do? Instead of my man John, Saturday I was waiting for "The Autism Police" to come get me.  I have decided that there must be a group of "Super Hero" type people in the Autism world that will come slap you with a fine for doing something you sure as hell know better than doing.  I always thought I had a little common sense. I would never take my child in a Chuckee E. Cheese. We haven't gone to a movie theater yet.  I THOUGHT I was going to do my part for the rainforest, not commercialism.  But it happened and my child was hysterical in a situation that could have been prevented by me. I knew the "Autism Police" were going to get me just as sure as the time she ate four Popsicles full of high fructose corn syrup and went berserk. (She needed to have one of every color-leave me alone, but in my defense I now make Popsicles with good juice and organic yogurt).  Fortunately I learned my lesson and did not receive a visit from Temple Grandin, Holly Robinson Peete, or Augusten Burrough's older brother.

Sunday rolls around.  I have had a birthday party on my son's calendar for a month.  We bought the present two weeks ago.  He even picked out a Spiderman gift bag.  We drove over to the house, a day late. Yes, the party was Saturday not Sunday, probably while we were sitting in the Rainforest cafe with a waitress who thought it would be brilliant to offer my child a balloon to quit crying.  The thing with Kenneth is I can't pull anything over on him.  So he looks around and screams, "THE PARTY WAS YESTERDAY!" and bursts into tears. So within 24 hours, both of my older children were hysterical.  One for being overstimulated and one for missing the stimulation. Perfect. I'm a quack.

Then one little thing clicked. I turned to Kenneth and said, "Do you know how you and I feel right now?  Upset we missed our friends? (I was looking forward to talking to other moms so I was just as put out as he was.) Well, this is how your sister feels when she has to be in a crowd, or be in a big noisy group. This is why she cries sometimes and we have to help her get ready for something."

The thing about my middle child is that while he will wet his pants so he doesn't have to miss a television show, the wheels in his head do turn for other things. I think he and I both got her in that moment.  He quit crying and said, "It's OK mom.  Let's go give *Billy* his present."

I'm sure I'll screw up again before all of them are on their own.  I just hope the "Autism Police" will let me off with a warning this time.

Safety Town Princess Divas

Last month I went "home." Those of you from the south know what I mean when I say that.  I mean I went to the place I spent the majority of my life so far, for better, or holy God,  for worse. Because it is, holy God again, a sixteen hour drive with traffic (thank you honey I love you), if we go we stay a long time.  If I'm staying a long time, I need my kids to participate in something or they start to get on everyone's nerves.  This year, for my beloved daughter, I chose Safety Town.  It is a free program run by the police department that teaches children all kinds of safety rules: fire, playground, crossing the street, all of the good stuff.  They get a gift certificate to Chick-fil-a (ahhhh) and a free bicycle helmet at the end.

Those of you who have been with me a while could imagine why this program might appeal to me.  Children on the spectrum don't always have the best sense of what is and what is not safe.  Just last summer the police showed up at my in-law's house because she had gone down to a neighbor's house and was jumping on their trampoline.  She wasn't verbal enough to tell them who she was so they called the police. Understandable.  It was not the most embarrassing thing to ever happen to me in my life so far.  I can find comfort in that.

Before I even registered her for it, I made sure they took special needs kids.  Not only do they take them, they give them their very own one on one assistant for the program.  Score one for Safety Town before we even hit our first traffic jam in New Jersey....

I sat through the parent orientation no problem. I forgot how much I missed southern accents.  I didn't crack up any time she ever sang the "At the Curb" song. She knows now not to talk to strangers, play with matches, and always wear a helmet.  We call 911 if there is an emergency.  We do NOT talk to strangers no matter how much they know about Disney anything.  She refused to "graduate" and honestly, that would have been way too overwhelming to an otherwise perfect two week program. So no big deal that she didn't sing in front of a crowd.

Then I remembered she had "homework." She is supposed to be able to recite certain things about herself in case she gets lost.  It definitely would have helped last summer on the trampoline. Bygones.

This is what happened at my mother's house:

Me: What is your name?

F: Gabriella Montez

Me: Where do you live?

F: Albuquerque, New Mexico

Me: What is your mom's name?

F: Mrs. Montez-I don't know her first name but I go to East High.

Me: What is your phone number?

F: I don't know but all the numbers I need are in my cell phone-including Troy's.


Me: Frances enough!  This is a test to make sure you know how to keep yourself safe. Not a High School Musical audition.

I gave up. She was getting too much attention and cracking herself up in the process.

Last night I was back to school cleaning and I found her Safety Town workbook. I decided to try again. I was hoping she wouldn't remember her little creative streak from before.  What was I thinking?


Here it goes:

Me:What is your name?

F: She starts signing a weird sign language and whispers, "My name is Ariel and my dad is King Triton but I can't tell you anything else because Ursula has my voice and I shouldn't have talked to her either."  Back to sign language.  Then another whisper, "I live under the sea near Denmark."

Me: Frances! Take this seriously please!

F: OK Mommy, I'm sorry. Try again.

Me: What is your name?

F: Snow White
Me: Where do you live?

F: A castle in Germany at first but then I had to downgrade to a cottage.

Me: What is your mom's name?

F: The Evil Queen but please don't call her because she wants me dead.  Oh!  And she has poison!  I'm not supposed to swallow poison and that red apple is full of it.  Let's put a Mr. Yuck on it.  Call Doc instead.  He is in charge of me.

It is really hard to keep a straight face during all of this, I promise.

Me: Frances......

F: No, no seriously Mommy I have this now.

Me: Fine then, what is your name?

F: Pocahontas.  I can spell it!!!!

Me: FRANCES!!!!!!!!!

F: OK, OK, my name is.....  (Big Grin on her face)  Hannah Montana.....


I'm done. I'm sure she is safe for now....

The Grocery Store Diaries 10: Beer please.....

Dirty looks: Hmmm, about five
You've got your hands full:  Three, four if you count the man who collects the carts running over to help me ASAP.
Total damage: Lowell ate a couple of grapes and that changed the weight so I'll bet I owe the grocery store about half a penny.  Call the cops if you must.

Today was one of those days that you think everything is going fine, and then you end up buying another mother a six pack of beer.  Yes, I said six pack of beer. I bought it.  For another mom.  No joke.

My kids and I have our regular routine going just fine.  It starts in the parking lot.  All three of them feel a need to drag toys around the grocery store.  It can be a Barbie, a Spiderman figurine, or a Hotwheel car.  More than likely two out of three of them will scream to take a blanket in as well.  We say goodbye to most of the toys and then narrow down what we are taking in to one thing each.  That means we only had three things to search lost and found for later.

After we make it across the lot, they fight/decide who gets in what part of the obnoxious four seat grocery cart.  Then they fight over which aisle we are going to go down first because you know we absolutely must buy the apples on the other side of the store before we put the bread right by the entry way in our cart.  If the baby hasn't napped, you will hear crying and screaming up and down the aisles.  When he is sleep deprived he doesn't seem to understand that we have to pay for the food before we eat it. I suggest ear plugs on those days. Normal stuff for us-totally.

So I've had a little obsession lately about a television show called, "What Would You Do?"  The wonderful John Quinones sets up situations with actors and tapes people's reactions.   Once he had a saleswoman being very racist to some customers.  Another time he had an attractive woman trying to steal a bike.  It did not surprise me in the least when men started helping her.  It is one of those things that either makes you laugh hysterically or scares you to death.  Now my biggest fear is that John is going to pop out of nowhere and say, "Mrs. P, why didn't you stop the fight?  Why did you let the kid get into the car with the old man?  etc. etc.  I don't want to look like an idiot on television.  Well, for that anyway.  I'm always on the look out for these situations.

Today I sounded like my normal broken record, "Don't hit your brother!" "Don't stick your head out of the cart." "No, we can't buy three boxes of cookies." "Yes, Daddy knows we are buying that." Yadda Yadda Yadda.

I was walking down the soup aisle because despite the heat my daughter must have her chicken noodle, and I heard the patter of the little feet.  Nah, the patter of little feet is for newbie parents still in the honeymoon phase of a newborn that can do no wrong.  I heard a stomping toddler take off running on a frustrated mother. BUT- I saw all six of the feet that I gave birth to strapped in their cart????? Who was this kid?

Before I could look too hard, in a grocery store in Connecticut, a mother screams at her son, "GET YOUR ASS IN THE CART!"

Now let me tell you guys something.  I would have judged her severely ten, maybe even four, years ago.  But now I know that she had had all she could have and the kid kept running like the gingerbread man.  Then I remembered Quinones.  What was I going to do if he popped out from behind the aisle not only because I didn't say anything to her, but also because my kids were going to have strokes from all the chicken noodle soup?

So I played cool and turned my cart around, and by this time she had gotten him back in the cart but she was ranting  that she would spank him in front of the whole store if he did it again.  Then it came to me what I would want viewers of "What Would You Do?" to hear me say.  And I said it.  I didn't think, I just said it.

Wait for it....


"Sweetheart, if I promise to buy you a six pack for after he has gone to bed, do you promise to quit speaking to him that way now?"

Heineken....No Quinones though.  Maybe next time.....

My Brother Charlie at our house.

My three children and I love to read.  When we read together, it doesn't come out all cutesy wootsy like one of those families that passes the "Pat the Bunny" book around so everyone can smell the flowers or put their finger in mommy's ring.  We tend to get creative with our story times.  If you are new to Quack reading time, you can view my posts on Caps for Sale or Goodnight Moon and you will get the idea.  If I gave them Pat the Bunny, Lowell would say the flowers were yucky like a diaper and Kenneth would say he would rather put his finger in his nose than in a gold ring that wasn't real to begin with.

Nothing is more fun than reading a book with my kids and listening to them interject.  It comes from the time when I worked at an International Baccalaureate elementary school.  I learned all kinds of strategies to create inquiring minds and children that think for themselves and make connections with the world around them for the rest of their lives.

Who believed that?  No way-they interrupt me because I am too lazy to tell them not to and I am raising them to be more sarcastic and annoying than I am.  Why lie?

If you ever need to talk to your kids about anything, you can always hit google-but it is a lot more fun to find a nifty picture book.  There are all kinds of books out there about how to talk to kids about everything. It starts with the "Where did I come from?" question and goes down hill from there.  My favorite was when my mom brought home, "What's Drunk Mama?" to explain alcoholism to us. Oh yeah that worked.  I would love to get my hands on the book explaining plastic surgery, just in case I come home with a new nose or bigger boobs, or even better a nice flat tummy, and the kids scream and run out of the room.

I don't read a lot of books about autism.  I just don't.  I prefer to read fiction.  If it involves a vampire,wizard, or a female bounty hunter in New Jersey, I'm your girl.  I just can't read about something I am actually living, so it is hard to read autism books or anything on how to be a mom for that matter.  I should try.  A friend of mine loaned me a copy of "My Brother Charlie" by Holly Robinson Peete, and this was a first.

Holly is an actress and one of her children has autism.  I grew up with  21 Jump Street. I'm not athletic but she married somebody.  I'm assuming football but it could be basketball, I doubt it's baseball. I'm not googling it right now to pretend I know something that I don't.  I do know that I spent my high school years watching her and Johnny fight crime and she is married to a ball player and one of her four children is on the spectrum.  She started the HollyRod foundation.  I'm of two minds when a famous person shares.  I get irritated when famous people become experts because they are famous, but I'm also glad that the famous person is getting the word out there.

As I read it to myself I remembered feeling a lot of the same ways she describes. My daughter was different from the other toddlers I knew, and I was told repeatedly she was just taking her time. Holly got a diagnosis quicker than I did for my child.  I don't know where they got off telling her he would "Never" do certain things.  It all shows how far we have come in ten years of research.  Reading the stories of others is absolutely wonderful and this is another one for your bookshelf, but remember you can talk to a breast cancer survivor about your cancer, but you still need an oncologist.  I'm digressing-most of us already know this.

So I had this children's book that I liked and I have three children and I decided to read "My Brother Charlie" to my older kids to see what would happen.  I have wondered how my middle child views his sister.  He never seems to notice a difference in her.  He once told his best friend that his sister was little even though she was big, but that is the only time I have ever heard him say anything.

Here are some hi-lights on how Frances, Kenneth, and I read the book:

P: And names that start with the letter C-Callie and Charlie.
F: We don't have the same letter in our names.
K: Well, you start with F, and I'm four, so maybe mom was thinking about that.
P: I can stare for hours at the Big Dipper and the moon.  And I love to talk.
F: Me too!  Talking is fun. (Actually she didn't talk until age three and before that she was signing, but I let it go)
K: I love to talk too-let's all talk. (Anyone who knows us knows we never shut up.)
P: Our dog, Harriet...
F: Wait, they have a dog?  When do we get a dog?
K: Yes mom, we should have a dog too... (Um, no)
P: He hates math.
K: Nobody likes math-that's when you have numbers instead of letters.
P: Right, anyway....Charlie has Autism.
F: Autism?  I've never heard of autism.  (I will not cry, I will not cry-she doesn't know she has it.  When does she find out?)
P: We say we love you.
K: We are always saying that too. What is it with moms and I love you?

Later when I was tucking Kenneth into bed, I tried to be cool and tell him that he was picked extra special to have two siblings with autism.  Just like Callie and Charlie in the book.  I couldn't wait to hear his response.  I knew it was going to be magical and he was going to step up to his calling.

This is what he said:

"I don't know about their autism, but I do know that their feet stink."

Maybe we will read this book again in a few years and try to feel daddy's scratchy face in that Pat the Bunny classic.

But Holly, thank you for writing it now!

The VCUG Revisited

Yesterday was my 6th VCUG as a mom.  I have blogged about this twice before.  I have been dreading taking my son for this test since last year when the x-ray showed stage two reflux in both kidneys.  Because the test is barbaric and I have no idea what an alternative for it would be.

My middle child finally succeeded in breaking my heart for real. His experience is posted here.  Now, he was two and a half on that day and he still remembers it and he gave his brother a big hug yesterday after it was over.  Then he turned to me and said, "The worst part of that day was that you were working with the doctor Mom. You weren't trying to help me."  Mother. Heart. Broken.  I cried real tears after they went to bed because at age four that was incredibly insightful and that is the way it looked from his perspective.  I did tell him that that test was the only way a doctor could get a picture of his kidneys and bladder to make sure nothing was wrong, but then he said, "I could have told them nothing was wrong."  Anyway, bladder x-rays are always going to be the buzz word he can use to trigger mommy guilt with me.  Ugh.

As I was dreading this last week more than a root canal or a visit from a Jehovah's Witness, my phone rang.  It was a woman from the hospital's "Child Life" team.  I had never heard of it before.  She started to tell me about the procedure but I told her I could write a book on it.  So  then she told me about her program and explained that if I wanted her to, she could help me keep my toddler calm during his VCUG and were there any particular songs, games, and cartoon characters that he preferred?  If I hadn't been in the grocery store trying to find the blue yogurts with the strawberries on them in the back of the aisle I would have fallen over.  Someone at the hospital was paid to keep my child calm and happy during the procedure?

She met us in the x-ray room after he was in his little scrub suit.  She had bubbles, Mickey Mouse books, and Thomas the Train stickers.  After the catheter was in, he quit crying and started popping bubbles and talking about Thomas.  The procedure did indeed take thirty minutes instead of the two hours it took when my middle son screamed his head off.  Could I have been the one blowing the bubbles?  Yes, if I didn't have to hold his hands, rub his head, and watch the x-ray so I could ask the doctor questions later.  An extra sweet person is always a blessing.

Instead of having reflux in both kidneys it is now down to one.  Yes, he will still need to take his preventive antibiotics and I told the radiology team, "See you next year!" as we left.  But if they still have a child life team, it will be a lot less of a wretched experience.

In a bad economy, everything is downsized and cut.  Keeping children safe and happy when they are scared and confused is not a place to do it.  If I ever need a new career I'm looking into this.

Comments?

I think I have fixed my comment problem.  If not I'll keep trying!

Climbing out of Hell

I haven't been in the mood to blog lately.  I have had plenty to write about and tons to share.  But if I started I would stop.  I could give you all kinds of reasons and they are true.  The first is I am addicted to The Millennium series.  I finished The Girl with the Dragon Tattoo and plunged into The Girl Who Played with Fire and went ahead and bought the Hornet's Nest in hardback.  The second reason is that I love my summer time off with my children and the computer is work to me during the school year. So we are hitting the lakes and the playgrounds and spending quality time with friends and family until it is back to the regularly scheduled work from home mommy routine. But the main reason is that I have a dear friend in what I call "Hell" and when I sit down to blog, I think about her.  She has a beautiful blog and when I try to type about enjoying my boys being quiet only to find out they are sharing a jar of peanut butter with their bare hands on the living room couch, I can't do it.   But I will.   I have to.  I can't not.  I have to blog as much as she does.  Because I have been to hell too.

There are tons of trite cliches and sayings about bad things happening to good people, everything happens for a reason, God carries you, etc. etc. But I am blunt and please forgive me if I offend you. NOBODY wants to hear that when it is happening. This is what I say. At some time in our lives, we are going to go to hell. I think about everyone I know and I can't think of a single person that hasn't had an atrocity occur at some point in their life.  Some of us, unfortunately,  have more than others and we all know that one bad thing in your life does not prevent another from occurring.  I have been to hell now at least four times.  How do I get out of it? I climb. I keep climbing.  It gets better.  It takes a long time, but you live again.

Right when it happens?  I call this "Automatic Pilot" time.  You eat, you sleep, you take a shower.  Every now and then you will remember to brush your teeth.  Use deodorant, possibly some lip gloss.You might not do any of that regularly at first, but if you have friends worth anything they will make sure that you do.  Eat, sleep, take a shower.  You accept the hugs and the kisses and meaning well visitors. Please try not to blow up at anyone if they give you a cliche, but I forgive you if you do and so will they eventually.

Every day from that point on is the "Before and After" and you are living in the "After."   My "Befores" still pop up every now and then.  My four year old son just got his first lightsaber, which triggers a flood of Star Wars movie memories of a time when I had cousins alive and well.  I always had to be Leia.  I never got to be anyone else.  There was no Padme before 1985.  Fortunately we were all too young to care about gold bikinis. 

Because I'm blunt, I'll tell you that the "After" sucks.  It sucks for a while.  It sucks more without support, but it is going to suck no matter how much you have.  You are going to look at things differently than other people do.  Every time Harry Potter ever walked down a hallway at Hogwarts and had all eyes on his scar, I wanted to buy him a butter beer.  I also wanted to tell him it could be worse, but I didn't really know how it could be, and thank goodness he was a made up character.  Ditto for the Vanger family in The Girl with the Dragon Tattoo.  Imagine being related to a serial killer! That's embarrassing.  How do you do it? You climb away from it.  You keep going and slowly but surely you become you again.


The last thing I want to say is that you are "The One."  You know, "The one whose parents died in a plane crash." Or, "The one whose sister killed herself."  Or "The one who was raped."  Whatever the atrocity is, you are "The One."  And I don't mean you get to choose between two colored pills and chase Keanu into the matrix.  Sorry.  How you choose to deal with your oneness is going to make or break the way you live in your "After."  The good news is the more time goes by, the more people forget about your oneness.


So please excuse me for being still and grieving for my friend as she begins to climb out of hell.  Always be careful when you tell someone to go there.