Monday, April 30, 2012

Mommy, What is Your Worst Nightmare???

Nightmares; all kids have them. It is a natural developmental milestone.  Parents have nightmares also -- most of them are actually daymares, but we still call them nightmares.  This morning at breakfast, James was grilling me on my worst nightmare... This is how the conversation went (to the best of my feeble brain's memory):

Mom.. what is your worst nightmare?
That you will get lost and I won't be able to find you!
No, Mom, I mean the dreaming kind!
Well James, that nightmare is my daymare reality! I guess it would have to be that there was NO YOU! (He smiled at this)
Okay mom what was your worst nightmare when I was a baby?

That you would remain purple as a newborn and orange as a slightly older baby.  (James was born with the umbilical cord tightly wrapped around his neck, he must have been practicing for the Baby Olympics! We were terrifically lucky that he was born "in caul," still encased in the sack, or the outcome could/would have been my worst nightmare!  As an older baby, he ate so many canned mandarin oranges and carrots that he actually turned orange!) 
Then he trailed off to the Pokemon conversation that is always on instant replay.......... 

So today I choose to find my bliss knowing that my little man is all that I dreamed he would be.  A Houdini and silent wanderer, who is responsible for 97% of my grey hairs.  I hope your bliss today isn't something that sends you screaming to the salon where you can easily dump $150 without knowing it.  My bliss today is also that I choose not to go to the salon and wear my grey with pride knowing that I have grey because I have children! Sleep well tonight everyone!!

Sunday, April 29, 2012

Rodger.......... Mom Where's Rodger?

I hear Rodger's name over 100 times a day.  More than James looks for his sister, dad or me, he is looking for Rodger.  Rodger is his soul mate, his confidant, and his best friend.  Rodger knows all and is all things to James. Rodger plays baseball and has birthday parties.  James shares everything with Rodger. Rodger goes with us on vacation, to restaurants, to the dentist, to the doctor, had his tonsils out a few years ago, and has been to just about every hair cut James has ever had.  Rodger even helps James get his point across to the dense parents in his life.  I can't count the times that James has handed me his plate full of food and said that Rodger doesn't like this food he would prefer PIZZA!  Rodger is just one of the family.  

Unfortunately, Rodger sometimes gets left places and can't be retrieved and that is where the magic takes place.  Just like in the old classic Lassie show, a new Rodger appears and takes up where the last one left off!  We started with about 10 "Rodgers" with different colors and faces but the same general shape. At one time James loved them all the same.  It didn't really matter which one he had as long as he had one of them. It didn't matter if they had one eye, no eyes or two eyes.  It didn't matter if they had spots, brown fur or white fur.  It didn't matter, didn't matter, didn't matter at all... This worked well up until a few months ago!  Now the official Rodger has cousins, sisters and brothers. The official Rodger is spotted with one eye.  He has a scent that can't be described or lost even if given 50 baths.  He has a limp neck and faded fur.  He is the absolute personification of LOVE!! 
When James was first diagnosed with Classic Autism, my heart broke because I was fully aware of the social limitations individuals with Autism face.  Would he be able to make loving connections?  Would he ever say I love you and mean it?  Would he know that my husband, his sister and I love him more than words can describe?  Would he know what true love really is and feels like? I am glad to say that I can definitely say YES to all of the above questions!! In all instances, Rodger is somehow part of the equation.  Rodger is either somewhere in the picture or conversation. Rodger is the bridge between James' Autism world and our social one.  He has crossed over this bridge many times with the help of Rodger.  Who would have thought that a scruffy, limp necked, faded fur, stinky (and I mean STINKY not from lack of many trips through the wash) stuffed animal could do so much for us as a family?  I guess we owe a lot to Rodger and I guess in our own way, everyone in our family loves Rodger. He is James' Velveteen Rabbit.  He is REAL!! 

In an excerpt from the Velveteen Rabbit, the Skin Horse tells the rabbit what it means to become real... 

“Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.' 

'Does it hurt?' asked the Rabbit.

'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.'

'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?'

'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.” 

A few weeks ago at school James was asked to answer a question about a book the class had just read and here is his teacher summation of the exchange...

(Trying to get ready for the STAR testing) "Yesterday they read a sample story with questions.  The title was Carl's New Friend.  In the short story, it was raining and Carl ends up finding a frog who becomes his friend.  The question asked who Carl's new friend, boy, frog or cat.  The answer was frog.  I asked if anyone had a question on why frog was the correct answer.  James raised his hand.  I called on him, and he said, "A frog can't talk, so that can't be his new friend.  The answer has to be boy."  I explained that many people have pets and call them their friends.  Roger was sitting on his desk, so I thought that would be a great example.  I said, "Roger doesn't talk, but he is still your friend."  He very calmly but firmly said, "Roger isn't my friend.  He is my brother!"  I chuckled so hard inside...he was so literal about a frog not being able to be a friend because it couldn't talk...yet Roger can't talk and he is closer than a friend!  It was so cute!!!"   

So today I choose to find my bliss in knowing that the scruffy, stinky, one eyed, limp necked friend that is all to James is also all to me.  I owe him sooooo much!  I can never repay him for all that he has given my family.  He is the MVP (Most Valuable Purchase) in my life.  He is worth more than everything I own.  He is and will always be my hero.  (I just hope he last through all of the loving that James bestows on him everyday.) Thank you Rodger and you are always welcome to accompany us on any vacation, night out, movie, car ride, shopping trip, snugly story time before bed, and sleep in James' bed as long as you like.  But if you ever decide to stay where we have been, please remember that Target doesn't sell you anymore and you are one of a kind!  Please don't run away!  We all need you for our sanity!! 

Saturday, April 28, 2012

Stop the World........... I Wanna Get On!!

Unbridled joy!  Spinning because it feels good!  Laughing spontaneously because something that happened yesterday just tickled you again!  Dance walking, yes dance walking , Dance Walking video!!.  This is the world that I want to join.  Wouldn't it be wonderful not to be burdened with all of the mundane stuff that weighs us down on this planet called Earth?  Well that is the world that our children with Autism have.  Unfortunately a lot of what they do "just because it feels good," isn't politically correct or socially accepted.

  • Don't spin, people are looking at you. (Ah... what's your point?)
  • Stop laughing at nothing (I'm not laughing at nothing, I am laughing at the funny dog I saw yesterday wearing the silly hat)
  • Walk quietly in line, keeping your feet pointing forwards and your hands at your sides (It is a lot more fun to add a spin or two to make going from point A to point B more enjoyable)
So today, as I embark on a very busy weekend getting my elder child ready for the PROM -- so not sure how she got old enough to go to a PROM, but she is -- I choose to find my bliss in spinning, laughing spontaneously and dance walking (well, watching James dance walk as simple walking is tricky for me).  I leave you today with not a picture of my little man but of my young lady as a little girl.  Finding her bliss with T-I-doubleGUH!-ER... He is the King of Unbridled Joy!  So I guess she would be his queen or at least princess!

Friday, April 27, 2012

When You Can't Laugh... Just Love

(here is my disclaimer... I am horrible at the type of writing that I am doing today so I hope you will bear with me on this one because it must be said)
I have tried all day to come up with some wonderful topic to write about to bring joy to all of my blog readers. It is now 7:29PM and I am completely at a loss!  The horrible teacher bullying incidence in NJ, Please take a moment and support our kids has really put a damper on my perspective.  How could people in a special education environment be so careless with the fragile souls that are entrusted to them for the bulk of their awake hours?  Listening to the horrible things that were said in the classroom while the kids were supposed to be getting specialized education to reach their fullest potential, I cried.  Not just cried but mourned for the loss of a system that I have worked tirelessly to maintain the integrity of.

I hope that tomorrow brings back my happiness and joy, (my daughter is going to the PROM so it will be an exciting day) and I will be able to return to finding my bliss.  Tonight, I choose to eat all of the chocolate in the house, take a shower to wash off all of the ugliness in the world, kiss my children and husband goodnight, and snuggle with whatever one of my four furry purries decides to sleep on my pillow.  I hope that tomorrow I will switch on Facebook and see some happy news about my beloved Autism world.  Peace to all and good night!

Thursday, April 26, 2012

Sleep is Boring and I am NEVER GOING TO DO IT AGAIN!!

Ahhh sleep......... a time to relax and restore for 6 or so hours.  A time to dream of running through daisy filled fields instead of driving to this and that therapy session.  A time to "sleep like a baby" and not have a care in the world.  AHHHHH wake up... sleep like a baby... have you ever really watched a baby sleep?  They twist and turn, flip and roll.  When my kids were babies I remember getting them from the crib and thinking it looked like they had spent the night competing in the sleeping Olympics!

I can't tell you how many ASD parents I have talked to about sleep but it is A LOT!!!! Sleep, well actually the lack of sleep, is a hot topic in our world.  Should we use medication, how can he have so much energy today on 2 milliseconds of sleep she got last night, he keeps showing up in my room wanting something,  I think I should keep him from napping because then he will sleep much better tonight, don't I have the Right to sleep? ...The questions and debate about sleep or not sleeping are being asked and debated about by very tired ASD parents all over the world.  Let's look at the ones I came up with.

Should we medicate?... My questions would be "Medicate your child or yourself?" If you want to medicate your child with natural sleepy supplements don't forget to involve a doctor.  IF, on the other hand, you decide to medicate yourself, don't forget that while you are slumbering in unaware bliss, your little one is likely throwing an EPIC ASD party that will make all of the Frat parties you have gone to or heard about look like a chess club meeting.

How can he have so much energy with so little sleep?... As we all know, the inner wiring or the ASD brain is completely different than that of other brains.  It gets revved up and just can't come down.  The more it is revved up the harder it is to stop.  You know that exhilaration you feel when you are with your best friends having a great time?  Magnify that times 1,000,000 and you have the exhilaration your ASD child feels with sensory overload.   Eventually when you least expect it he will stop and crash.  Don't know when or where but it will happen

He keeps showing up in my room wanting something.  Well, we asked for our kids to have communication skills right.  Sounds like he needs to work on time telling skills.  My son showed up in my room a few weeks ago in the wee hours of the morning.  He emphatically announced that he was never going to sleep again because sleep was BORING!!!  My husband ran from the room and hit the couch, (he gets up at 4AM so ever minute of sleep is important). James joined me in bed and chatted happily about Pokemon, Mario, Angry Birds and everything that is way better than sleep!  I fell asleep to the melody of his sweet voice keeping one ear open to keep an eye on him.  I woke up several hours later ready to start the day and deliver him to school fully prepared to hear him still talking.  Instead I found a very sacked out little man with no intention of getting ready for school. HAH.. my turn!!

I think I should keep him from napping because then he will sleep much better tonight.  Sounds like a good plan but DON'T FALL FOR IT it is a trick!!! A tired child is a horrible experience.  They get over stimulated  and make your life a horrible place to be!  They will likely fight harder going down and may still wake up at some ungodly hour.  Keep the nap for your sanity!  (See this sweet baby sleeping above?  So perfect and calm planning his next level of attack wrapped up in the sweet innocence of his baby body.  Doesn't matter how young or old your child is, they are capable of concocting the most wonderful plans to ruin your sleep!)
Don't I have the Right to sleep? Ummm, I just checked out the Bill of Rights and didn't see sleep anywhere mentioned Bill of Rights  According to my unofficial ASD Parent Bill of Rights (ohhh, sounds like another blog!) you have the right to want to sleep but no where is sleep mentioned as being a guarantee!  So sorry, no officially you don't have a standing guarantee of sleep but since ASD parents are super humans ~ sleep isn't our superpower AUTISM is!!

So today pick your mantra from those listed below or make one up on your own and have a great day!

  1. Sleep is for wimps
  2. Coffee!... must have coffee!!
  3. Chocolate... must have chocolate!!   (we can combine two and three if M&M's would finally make a mocha flavor!!!!)
  4. I can make it to 10AM...I can make it to 10:01AM...I can make it to 10:02AM....................
  5. I'll sleep when I am dead
  6. I can't wait to get to work to finally get a nap (not the best option but...)

Wednesday, April 25, 2012


Since I don't know if today's IEP will be a fun experience or painful... I will be spending the day clearing my head and being away from the Autism world all together, at least until 2:29PM.  I did find this gem of a picture that shows that sometimes getting in and getting messy can be fun (it doesn't hurt when the mess you are creating is covered in BBQ sauce!)

Catch me on the flip side of crazy tomorrow when my head stops spinning from this and that assessment and what the school district will and will not be offering.  Have a blissful day and giggle like a girl just once.  You may like it!

Tuesday, April 24, 2012

Wallowing In My Not So Happy Place... Ah There It Finally Is!!!

I have spent the day sloshing through a mountain of information for James' huge IEP tomorrow ~ not funny!  I have also been dealing with kind of nostalgic depression and have listened to the same song over and over and over again.

                                                                Let it Hurt by Rascal Flatts

From Tears to TRIUMPH!!!!!!!!!!!

Whether or not an Autism diagnosis is expected or a complete surprise, having it given to your beautiful child can be very emotional.  I expected it and I prepared my husband for it but we both cried on 12/20/06 when our son was officially diagnosed.  In reality, my tears were a mixture of relief that I was finally being heard and sadness that he hadn’t received the early intervention that I knew as really important to his future.   Our gorgeous child was lost in a non-verbal world that we couldn’t reach.  His ten year old sister mourned the loss of the sibling she had wanted since she was two.  Our family drifted as we tried to pull together across the chasm of Autism.  I had spent years working with children with Autism and considered myself well versed in the treatments and practices that were recommended. BUT… this was my baby!!

We eventually found the strength to find the services that were going to give our son the best foundation for his future.  We all embrace his uniqueness and celebrate his exuberance about his life.  Our children have found a typical way of slipping into sibling rivalry and driving us, as their parents, crazy!

Autism wasn’t the end of the story.  It wasn’t the end of life as we knew it.  Autism was merely a comma followed by several …’s and punctuated by multiple question and exclamation marks! 

Maintaining a sense of humor was very helpful at the beginning as more days were difficult than easy.  As we became more familiar with him, all of the training we received became more second nature.  We continue to learn about his desire to be appreciated for who he is.  Our main mission now is to help him triumph everyday to his fullest potential. 

It is funny what we remember and the pictures that we cling to!  Find your bliss today and enjoy your babies.

Monday, April 23, 2012

Wanna Talk About All Of My Stuff... Do You Like Stuff Too?

Confession #1~ this post isn't a typical one, but I know a lot of the ASD parents out there will relate.
Confession #2 ~ I am a huge Toby Keith fan!!  I love his sound, his rhythm, his lyrics, love love love.... One of my favorite Toby Keith songs on the Pull My Chain CD is Wanna Talk About Me.  If you don't know it, basically it is about a guy "listening" to his girl friend ramble on about her "important" stuff.  He eventually cuts in with the chorus:

"I wanna talk about me 
Wanna talk about I
Wanna talk about number one
Oh my me my 
What I think, what I like, what I know, what I want, what I see 
I like talking about you you you you, usually, but occasionally 
I wanna talk about meeeeee (me,me,me,me-)
I wanna talk about me (me,me-)"

Who would have imagined that this song would become my sons theme song even though he wasn't even born when it was first released in August 2001.  Somehow every conversation that I have with James turns into a conversation about his favorite things: Mario, Angry Bird, Pokemon, and the new one, football.

"James, don't use too much toilet paper... you will clog the toilet" --->"yeahbut, then Mario would come and fix it because he is a plumber! And Mario likes tacos and spaghetti.  I don't like tacos but I like spaghetti but not with the sauce just the noodles............"

"James, don't chase the cat he will scratch you if he gets angry" --->"yeahbut, angry cats chase Angry Birds especially the red and black one.  The black one is the bomb........"

(This one had the potential to be a really good deep conversation... but alas...) 

James~ "Who was the Lusssss..." (couldn't come up with name)                             
me~ "Give me a hint" 
"He was shot by a James but not James who is me"
"Give me another hint"
"He was the guy who said don't worry about skin but character"
"Ahhh, Martin Luther King Jr."
"The James who shot him shot him with a raft"
"You mean a rifle?"
"Yup... mom do you know what his favorite sport was?
"I heard once it was baseball"
"Nope... football"
(then his sister chimed in)... "you made that up"
"YUP but I love football and the quarterback is the boss and he is fast and runs and tells everyone what to do and.................."

For verbal conversations I haven't come up with a global good solution yet.  We do have taboo table topics.  Mario, Pokemon and, Angry Bird are not allowed at the table during family meals.

never thought I would buy "character" shirts for my kids and never did for my daughter but for James, I send him to school everyday in an Angry Bird, Mario or Pokemon shirt so the kids will talk to him about his shirt and he can naturally jump into one of his favorite topics. 

I also send him in shirts that have the word awesome on it so that adults will comment on how awesome his shirt is and hopefully comment on how awesome he is! I also have one that put humor about his volume into perspective! 

Dressing for Autism success is my goal everyday, but sometimes James decides to go to school dressed for success!  
So today, I choose to find my bliss in the familiar conversations that I know so well!  I choose to find the comfort in the giggly times where James is becoming more aware that he is manipulating the conversation.  

Confession #3 ~ I love having a conversation with my little one no matter what we are talking about and it makes him smile.  And as we all know, smiles are contagious!  

Sunday, April 22, 2012

Too Funny Not To Blog About!!!!!!!!

Okay, I was going to take the day off and celebrate Earth Day 2012 but I nearly choked to death from laughter at breakfast this morning!  So I will give you the highlights....

Grammatically Speaking... (James gets told frequently by his "grammar queen of the universe" sister, to fix his grammar)

  • in the middle of a conversation ... "Charlotte and me.... or I...."
  • "I spinned or spun"
Playing the "One thing I know about..." game
  • One thing I know about daddy is you lawn the most on the grass! (incidentally, his sister heard it as "lawn gnome" and his father heard it as "long moan.")
Talking about football with his dad who really knows nothing about football
  • you know daddy, the quarterback is the boss of the team... daddy asked him how many quarterbacks does it make a fullback?... (James didn't get it until we reminded him about fractions and then he took off) 4 daddy... then daddy asked him how many quarterbacks does it take to make a halfback... (James had it this time quickly) 2!  
Trying to sneak banned words into a conversation (these words are allowed in the bathroom)...
  • talking about his new punching bag... "I kicked him in the butt"...James, you are not in the bathroom!... "yeahbut, this but has only one T and not 2!"
  • again talking about his new punching bag..."I punched him in his wienie"... James, you are not in the bathroom!... "yeahbut, I was talking about food!"
So today on this wonderful Earth Day... Go forth and find your bliss and don't forget to giggle at the amazing workings of the Autistic mind!!

Saturday, April 21, 2012

Let's Make A Deal come over to the dark side, we have cookies!

If you have a viable dragon egg in your purse (back pocket for guys)............ you must be an Autism parent!  Ever have nightmares about Bob Barker (now Drew Carey)?  Does your heart stop the second you hear, "Let's Make a....."? It doesn't matter if the rest of that sentence is cake, reservation, dress, or voodoo doll, we always seem to go immediately to the dreaded DEAL!! Kids with Autism are genetically programmed with the "Let's Make a Deal" gene.

When they are little, thankfully it doesn't take much to seal the deal.  "OHHHHH, if you sit quietly in the shopping cart prison while mommy shops for the one food you will eat, you can hold my  (sigh) expired, useless gym card!  DEAL??" (you always need to preface each deal with the exaggerated parental, "OHHHHH" so they know how "special" the deal is) As they get older the deals naturally get bigger.  The trick is not to dig yourself into a hole that you don't want to be in with an out of control child!

If you sit at the table for 1 minute during supper, then you can have chocolate pudding for dessert.  DEAL?? (Please sit at the table for 1 minute because without your nightly chocolate pudding the rest of the night will be HELL!!) 

If you pee in the potty (or at least the potted plant, potty and potted at least have the same root!) instead of  in the dog bowl (thanks Bacon and Juice Boxes for that gem!) then you can have 15 extra minutes of watching the 16 second commercial that you like to watch over and over! DEAL?? (Please pee in the potty because I need to see the Mayhem guy pretend to be a toddler 60 more times to make my day complete! (to be completely honest ~ this one is my absolute favorite!!  you either will laugh or cry)

If you get to school on the bus without opening the back emergency door and jumping out (yes, my son actually did this more than once!  He was a Houdini with 5 point harness bus seat belt) then you can have a day free of an emergency room visit!  DEAL?? (please stay in your seat, the emergency room is going to start charging me rent)

And so it continues, day in and day out. The daily task of "I'll see your extra bag of chips in my lunch and raise you a new freakishly expensive power ranger toy that comes with 99 tiny parts~ that will immediately be scattered to all corners of the house~ that will end up inside the cat~ that be thrown up by said cat~ that you will slip on~ that will make you fall~ that will mean that you can't fix some "nasty" thing for supper that you know I won't eat so you will order my favorite take out! It is a win-win (well for me)  DEAL??"  

So the next time you are faced with the need to "Let's Make a Deal" to get your child to... well do just about anything, and you see their chubby little hand outstretched to seal the deal............. RUN for the nearest exit and don't look back  They likely would have done it eventually without the Porsche anyway!

Friday, April 20, 2012

Siblings For Better or Worse

Going from here to...

here in 8 short years

I love talking about sibling issues with parents of special needs children.  Siblings are the spice in the perfect family recipe.  I have siblings and my husband has a sibling. We felt that our daughter should be given the same chances we had growing up to learn about his amazing relationship.  My daughter started asking for a sibling around her 2nd birthday because some of her friends had a new brother or sister.  She kept asking year after year until finally when she was 7 her fondest wish was finally granted.

To a child, asking mum or dad about ordering up a sibling is kin to sitting on Santa's knee and listing off all of the things they want in a sibling.  "I want a sister, who likes princesses, wizards, fairies, glitter, ponies, dress up, does everything I tell her to do ........."  My daughter cried when she found out that she was going to having a brother and not a sister.  She had to cross out the first thing on her list. What else would have to go?  She was too young to understand basic biology so I didn't even go down the "don't blame me" path.  We have a motto in our house that was taught to James when he was having great difficulty not getting everything he wanted, "you get what you get and don't pitch a fit!"  

The second our daughter got her hands on her brother the sibling gene kicked in and she was hopelessly in love!  She used to come home from school, run to his crib and poke his foot so he would wake up.  Then she would announce that he was awake and could she play with him PLEEEEEASE.  It didn't matter to her that I had spent the 45 minutes before she got home getting him settled so I could give her my full attention and have alone time with her.  He was the best doll ever!!!!

Over the years our kids have fallen in and out of like with each other.  "Mom, tell him to stop looking at me!" (eye contact..... YIPEE) "Mom, she doesn't want to play with me!" (learning how to handle NO.... YIPEE) "Mom, tell him go away!" (he knows that others exist... YIPEE)  "Mom, she wants to hug me and I don't want a hug!" (learning about accepting affection from others and talking about what he wants and doesn't want.... YIPEE)  The sibling relationship is a wonderful teaching tool with a zilliions of learning opportunities a day.

For my full take on sibling relationships (not just siblings of children with Autism), I have a pamphlet that I wrote for Well Worth the Journey: Sibling pamphlet    If you would like my take on the sibling connection specific for Autism, my Autism pamphlet has a sibling connection page: Autism pamphlet.  It is important to take the needs of all of your children into consideration to keep balance in the family.  Siblings often need support of other siblings in similar situations.  You can check out the following link to see if there is a sibling support group in your area: Sibling Network.  

Finding your happy spot when your kids are going at it can be difficult.  One way I have heard that works well is to get your bickering siblings on either side of the windows in your house (if you live on the ground floor!).  Give each one a spray bottle and get your windows washed while they find a way to be civil with each other!  If you happen to be in the same boat I am with my daughter being 7 years older than her brother, I just look at her and simply say, "You asked for a sibling." 

Thursday, April 19, 2012

Potty Mouth... Not In My Kitchen!

I woke up this morning with today's blog mostly mapped out in my head.  I turned on the computer and the first thing I saw was a blog entitled "POOP" on one of my favorite Autism blogs, Bacon and Juice Boxes:  My great blog idea went out of my head as I read the page before me.  Individuals with Autism often have .... tummy troubles.  As I read the horrifying account of a grueling medical procedure that his little boy had to endure, it occurred to me that ASD parents will literally talk to anyone, any place about ANYTHING.

Today I feel unusually conflicted about my place of joy.  My family is very lucky that James doesn't have the horrible GI problems that often plague children with Autism.  What a weird thing to be happy about.  YUP, my kid as terrific bowel movements!  On the long laundry list of possible "+1's" (Autism + speech delay + sensory integration deficits + ADHD + OCD +... see... that is the "+1") that an Autistic kid could have, he has a healthy GI system!  We have a different problem in our house....... potty mouth!

My son loves to see his sister squirm and nothing gets her more riled up than his talking about bodily functions and body parts.   We had to put a stop to it for her desire to have a supper with out "those words" being talked about.  To an 8 year old boy, poop, pee, butt and fart are hysterical conversation starters.  In our house, if he isn't in the bathroom when he is talking about such things, he is given a warning and if he doesn't stop... well you all know the drill, we start taking stuff away hoping that he will stop before you get to the big stuff that if he doesn't have in his life means your life will be HELL!!!

Well, two weeks ago he finally figured out how to have the best of both worlds.  We were having a lovely family meal together and James was fully involved with eating and listening to the conversation. All of a sudden, he jumped up from the table, ran into the bathroom, (which happens to be in the kitchen across from the table from his sister), and turned on the light.  He closed the door took a breath and let out a long utterance of : POOOOOOPPOOOOPPEEEEEEBBBUUUUUUTTTTTTT and let out an audible fart!!!! After about a minute, he opened the door, turned off the light, sat back at the table and smiled at his sister.  Then he looked at me to see what I was going to do.  My husband and daughter also looked at me to see what their reactions should be.  Without even taking a breath, I put my hand out and gave my son a big high-five!  After all he had followed all of the rules, he was respectful of his sisters sensitive side and he had outsmarted the adults in the family!!

Wednesday, April 18, 2012

Not Funny..... Well Maybe a Little

I want to clarify my mission.  Finding a moment of bliss, a breath of happiness, something that tickles me daily helps  me survive in the ASD world.  It may not be for everyone. After all... Autism isn't funny! Endless doctor and therapist visits, not funny; meltdowns, not funny; fecal smearing, so not funny; knowing that our children with ASD may have difficulties for their entire life, not funny; financial hardship, not funny; broken marriages, not funny.  When looking strictly at Autism I fail to see any thing worth smiling about let alone laugh about.  So to be clear, Autism, not funny.......... yeahbut (one of my son's favorite words)... kids are!

Everything is new to to a kid and with every new experience there is the potential of over whelming joy.  The first giggles usually happen around the time a baby is 4 months old.  It is one of the milestones parents wait for because we know that laughter is very powerful.  It's powerful alright!  When my daughter was born laughter was one of the milestones I looked forward to the most because I knew from years of personal experience how wonderful it is.  I waited with great anticipation for her first giggle.........well it happened, right on schedule.  First she smiled and then she giggled... how wonderful... NOT... she screamed for the next hour!  I guess for some, they need to be dragged kicking and screaming into the world of humor.

For us who live daily in the world of Autism, everything may not be new everyday.  Our kids are sticklers for routines.  Break the routine and suffer the consequences.  We do the same thing day in and day out.  Some of us serve the same foods day in and day out (for some of us, try to sneak in a different food and suffer the consequences).  We drive the same route day in and day out (for some of us... change the route and suffer the consequences).  For some of us, we wash clothes every night so our kids can wear the same shirt everyday, or we suffer the consequences.........  As parents, grandparents, aunts, uncles, cousins, caregivers, siblings of children on the spectrum.........We suffer!  For me, this is why I love to laugh.  I make a decision everyday to find my bliss. Today, I chose to find my bliss looking back at one of my favorite pictures of my son as a tiny baby peacefully sleeping in the most perfect ballet position.  As I look at it I can feel the giggles coming... what will be your bliss today?

Tuesday, April 17, 2012

Loving Language In Any Form

I love language and communication.  Now, language is different than speech.  Basically, language is rules of communication and speech is the verbal utterance of those rules.   There isn't a parent out there who didn't smile, smirk, giggle, or outright laugh the first time their little one tried to say the word "spaghetti".  How long did you adopt their version of "psketti"?  I cried the day that my daughter learned how to say the complete name of the bridge that we went over everyday and stopped calling it the "dumb bridge."   When my little man was first learning to use his verbal capabilities and language together, the outcomes were often funny to me as his mommy. Here is a very early "sentence" he said when I asked him if he had a good night, "(James)  Bath... I have bath... all done bath...I James... sleep...bed sleep all done". 

Our kids are so funny and every family who has a child and Mr. Potato Head has this picture (Laugh out Loud and Often.  I hear it burns calories!!)

And another; James:  Mom, get up…Get up of bed  Me:  Why?  James:  Get me to eat

And my all time favorite from the early years:

(James)            Cows
(Me)             I see the cows.
(James)             Cows eat
(Me)             Yes, the cows are eating
(James)             Cows eat……………….. grass
(Me)             Yes, the cows like to eat grass
(James)             Grass yummy
(Me)             The cows think grass is yummy
(James)              Grass yummy?
(Me)              Grass is not yummy for James.  Pizza is yummy for James.

(All of the above examples were when he was about 4 years old)

Now, don't get me wrong and I hope you don't take this as if I am making fun of my son's disability.  On the contrary, I choose to find joy in his attempts to communicate!  Yes, I laughed during each exchange and hopefully I didn't bruise his tender psyche but today he is capable of finding humor in everyday things he does and does and does and does....(those of you on the same perseveration parade as me will understand this).  Now, 4 years later his communication, language and speech skills have truly skyrocketed and we have conversations like the following that happened just a few weeks ago... " you know mom, the smaller the delomirator the bigger the piece" (Yikes, fractions in second grade but I wouldn't have wanted to miss that gem for anything!)

I understand that not everyone who is reading this has a verbal child like I do and that is where communication comes in.  Find a way, sign language, pictures, PECS, APPS on your phone or IPad, doesn't really matter what method you use.  I promise you incredible joy when you start sharing joy and laughter with your child.  I started with silly pictures: a pig wearing a dress, a dog driving a car and talked my son through the picture and showed him why it was funny.  Humor, like just about everything else with our ASD kids is something that may need to be taught. Our family used to sit down and watch "Whose Line is it Anyway."  Crazy comedians doing improv turned my blank-faced little man into a humor junkie rolling on the floor trying to catch his breath!  Is the show appropriate for your family?  I don't know.  Was it appropriate for mine?  YUP!  It got the job done and although he didn't always understand most of the speech, he certainly understood the communication of physical humor in the sketches! 

So what do I want you to take away from this blog today?  Find time every day in between your driving to this and that therapy to stop and be goofy!  Sing a silly song, look through a silly book, make faces, doesn't really matter.  Show your child how much fun laughter is and before you know it they will likely be laughing along with you!      

Monday, April 16, 2012

Autism ISN'T Funny!!! Wanna Make a Bet!!!

To the lay person, Autism isn't funny.  It is something that is unknown, overwhelming, and looked at as an end not a beginning.  To those of us who love someone with Autism, on the surface it isn't funny either.  We need to peel away the layers, the worlds view of Autism,  the school districts view of Autism, our view of Autism, our perception of our child, how our family now looks at our child, the way we now look at our child, the everyday routines and therapies, the everyday small steps that make us smile, the simple joy of watching our child succeed in something new that make us giggle, the rip roaring hysterical things our kids do that they don't realize that make us cry and laugh at the same time because they are soooooo funny!  This blog is intended to help families in the same position I am in find the joy of laughter again.

I love a child with Autism. He didn't make a conscious decision to have Autism.  As a mum, I have cried, screamed, and bargained with the universe to allow him to have an easier life.  I have gone through depression and spent 1,000,000+ hours of research to make sure he gets the best chance of living to his fullest potential.  In the quiet of my home, I have argued with myself about if it is right to insist that he joins my world even though he is so comfortable in his.  And yet, 5+ years after the original diagnosis, I feel comfortable knowing that he is who he is in spite of all of my efforts and because of all of my efforts. 

My son is funny and he is starting to realize it.  He attempts to say funny things and often stumbles over the humor part so that it isn't funny to anyone else.  It is when he isn't trying that his true humor shines through.  Last night his sister was teasing him at a local restaurant that he doesn't eat cow meat.  He looked her straight in the eye and very seriously said..."Well, when I was a baby, I ate melted cow"... (melted cow ='s milk).  See, funny, and he doesn't even have to try.  

My best advise for the day is to find something that your child does everyday that tickles you and write it in a journal.  This journal will be your "Go To Book" for the days that you are having a great deal of trouble finding joy in anything.  Believe me... there will be plenty of those days!  Your child is exceptional perceptive and sensitive to the environment they are in.  If you are joyful, they are more likely to be joyful.  If you are stressed out... well we all know what that looks like on our kids, and it isn't pretty! 

Laughter, Could be the Missing Piece!!