Friday, March 30, 2012

Autism is PART of who they are, not ALL of what they are.

Yesterday the new CDC numbers for autism came out.  We know what they are.  I won't repeat it.  I posted on Grape Jelly on Pizza

I am sitting here in disbelief. Sad. So freaking sad and very mad at the new rates for autism. 1 in 88 US kids have autism. How can this be? WHAT IS GOING ON?? What the freak is going on here???

After many responses from readers, I was sent this one. 

Grape Jelly on Pizza, I'm very saddened at your perspective of these rates. I don't think diversity is such a bad thing. We WILL have to deal with autism, and as the rates go up, it will be LESS about us and MORE about them. It seems like you see autism as something that limits their opportunity as a person. It doesn't. I think they see more, and they feel more. Do you think they want anything different than the same love, respect, and care that we do? I hope that one day their ways will change our ways. It also doesn't matter what causes autism, it's the fact that it's here to stay that is important. So many autistics say that they want to stay autistic no matter what. Is there ever going to be a time that a person can be autistic and be proud, and happy about it? And can't we see something better behind an autistic than just a set of problematic behaviors? I would be autistic if I could choose to. We have to admit that we know nothing about autism. Do you think that it is simply some sort of bad mistake that the rates are jumping? Every person has a purpose, and so does every autistic. They don't HAVE autism, they ARE autism. And we need to accept that. We need to start listening to them up-front instead of talking behind their backs speculating things that don't bring us any further to knowing more about them. They are more than us. And better. Think about how they might feel, and not just you.
-Long-time sibling of two autistics

I went to a friend, Homestyle Mama (with a side of Autism) to double check if she thought my feelings were valid and she did. 

Then when I woke up this morning a lovely comment was written in response to the previous statement.  I'd like to share it with you because it fits how I feel.

I find these numbers sad too. I find it more sad that others are saddened by "perspective" of others. What I see here, is a mother who spends every minute of every day striving to help her son. I see endless battles with schools and therapies trying to find help for her son. ...I see a mother that turns her living room into an angry birds playroom for her son. A mother who fills her car with stuffed animals and stickers..for her son. A mother who spends endless hours fundraising for the Autism research. I see a mother who has little, if NO time for herself. I dont see a mother who thinks autism is more about herself...I see a mother who does whatever it takes to make a better life for her son.. which includes altering everything about her own life to better fit and understand his world. I see parents trying every single thing they can, to step into the world of their autistic child, to try and understand and communicate. I too have someone close to me, on the spectrum, but not severe. Do I wish this person felt proud and happy of who he is? I wish it every day. Instead, I see a child that has been picked on and bullied by other kids at school for years. I see a child that has been told he has "no heart" because he sometimes didn't know to laugh at jokes other kids told. I have seen this child come home hysterical after a bus ride home day after day, because kids called him "ugly" and a "freak" I have watched this boy watching other the other boys, wishing he were like them, wishing he knew how to fit in and understand their world and wishing they understood him. He isnt just like them. He is smarter, and he is amazing. But what I think doesn't matter, what HE thinks and feels does matter.That is what is sad here. He feels different and he is treated different. I don't see any parents here that don't accept the fact that their child has autism. I see parents who refuse to give up at trying to break the barriers so that they can understand the way their child sees the world. The people that aren't "listening" are the ones that have resolved themselves to the fact that these children "are autism". Autism is NOT "what they are" its a term or label for something we do not fully understand. It is PART of who they are, but its not all that they are. I am most saddened that we live in a world that has little help available for these children and their parents.

Thank you Stephanie for writing this.  Autism is PART of who they are, not ALL of what they are.  Love that. 

Wednesday, March 28, 2012

Obstacles to Overcome

I am sitting at my daughter's very first outdoor softball practice.  Her very first team sport.  There are 12 little girls, mostly dressed in pink and purple, not really paying attention as the coach starts talking. 

I ask myself, "Will my son ever be able to participate in a team sport?"

We are at a field sitting up on a hillside overlooking our city.  Row homes and businesses set against a beautiful, pale blue sky with an occasional streak of white, puffy clouds that roll by.  There is a tall, rusty fence surrounding the field but I take notice it's not fully enclosed.  This would be obstacle #1My son is an eloper.  This particular field has 4 baseball mounds.  Wide open fields and you would lose his attention almost immediately.

She's wearing the pink top with aqua bottoms.
The girls are practicing their batting skills.  There is a huge bucket of bright yellow softballs sitting next to the coach.  Just sitting there.  This would be obstacle #2.  Balls are fascinating to my son.  He would want to dive into them, take them all out, roll them around, put them all back in and not part with one single one of them.  They would be his and his alone. 

We are now 36 minutes into practice and their attention is now focused on the coach.  I'm impressed. They are learning how to catch grounders, quickly stand up and throw the ball back to the coach.  The one thing I love about my daughter is if she doesn't understand something she has no problems asking.  She will keep asking until she fully understands what she has to do to get the results she wants.  This would be obstacle #3 for my son.  He says yes to everything, even if he doesn't understand.  He wouldn't ask or know he should ask or even how to ask if he doesn't understand something.  There is still a big communication delay.

Running the bases are next.  How cute is this?  A bunch of 5-7 year olds learning how softball is played.  Her 2nd try at bat and she hit the ball.  She definitely bats left and catches right.  She keeps hitting them and her teammates are going after the ball.  Another hit and she is running to first base.  Oops, she fell on her way.  Not always graceful, my girl.  My son is a very fast runner and I'm positive he wouldn't trip but would he stop at the base or keep going.  I bet he'd keep on running. 

If he could overcome some of these obstacles he would have a chance to be a ball player like his Dad.  I think deep down, my husband would love this.  Isn't this what Dad's dream about?  Playing baseball with their son?  A moment of sadness comes over me, but if I'm to be a team Mom I have to shake it off and move forward. 

Maybe someday we can try a team sport.  Someday.

Thursday, March 22, 2012

It's OK

I'll admit, this morning was hard.  I was already in a funk because of reading some parents getting into it from other pages and that gets to me.  This community has experienced enough strife in our daily lives to at least have respect for one another.  Yes,  I will respect your decisions and please respect mine.  Can't we agree to disagree and move on?   We'll save that for another blog, another day. 

Our children have autism, yes.  They are all different yet the same, yes.  I wrote about Resentment and Jealousy Be Gone yesterday and today I am feeling fortunate yet so sad at the same time.  You need to hear that it is OK sometimes.  It is OK to mourn the loss of the 'normal' life you had dreamed for your child.  It is OK to look at your relationships and reevaluate them.  It is OK to want to scream at the top of your lungs that you HATE PEOPLE.  It is OK to go in your room, lock the door and cry, cry, cry.  It is all OK.  You have every right to do it.  You wouldn't be human if you didn't.  Then you regroup and hope to move on.

Yesterday Afton's Army wrote this: 

Raise your hand if you get tired of hearing "I don't know HOW you do it?"  not in a very complimenting tone either.  OK, so do what?  Be a Mommy??  Do most people not realize what it sounds like to a lot of us special needs parents is "Boy am I glad it's you and not me living with autism!"

I had to re post.  So a reader of Grape Jelly on Pizza responded with this:

And while my life can be hard, and I can't remember the last time I had a manicure or lunch with a girlfriend, I actually feel sort of superior (as awful as I KNOW that sounds) to the truly ignorant "I don't know how you do it" crowd.  Without fail, they see their own child as a burden--even neuro-typical child.  They take for granted all the milestones and successes, sometimes even criticizing their child because someone else's child did it earlier.  If their child runs up to them with a bug in his hand, saying "LOOK!  A BUG!" they freak out and yell at him.  I don't, because I am so stunned that my son used his words, observed something in his environment, AND wanted to share it with me.  My child especially makes me a better person.  I have always been a ten-things-at-once kind of person, and he makes me stop and do ONE thing.  I'm not sure I ever looked at a flower, really looked at it, before him.  I never appreciated the beauty of a rock until my oldest became obsessed with them.  And I never knew what it was like to see a room light up from someone's smile or to hear laughter that I was certain angels stopped to listen to until my child came along.  I wish my life were easier, partly because I'm basically a lazy person, and mostly because I wish THEIR lives were easier.  I have to watch them struggle with little things every day.  But if they're lives have to be hard, I'm so glad I get to share it with them.  Because while others don't know how *I* do it, I marvel every day at how my children manage the world.  Things that are easy for others are a struggle for them, and they still manage to smile, to laugh, to enjoy the world and share their joy with others.  It's a marvel.  How could I not feel anything but blessed to be a part of that?

I couldn't agree more with this mom.  Thank you Christal for writing how you feel. 

There are so many families who have life threatening illnesses on top of an autism diagnosis;  my heart goes out to them.  My life is so simple compared to theirs.  The only thing I can do is extend my hand and lend an ear to tell them I am here anytime if you need to talk.  Compassion.  Maybe that is what everyone should try to do, show more compassion.  Don't tell someone how they should feel or what to think.  Respect their decisions.  Take a moment and reach out.  You don't need to talk, just listen.  Reassure them it is OK to feel the way they are feeling.  You never know what is going on in their lives unless you have walked a mile in their footsteps.  Let's try to come together as a community and stop the meanness and start understanding.  It's in your heart.  You are a good person.  Reach out to others and respect their decisions.  With love and understanding, they will respect yours.

Wednesday, March 21, 2012

Resentment and Jealousy Be Gone!

Resentment - Bitter indignation at having been treated unfairly.
Jealous - Resentment against a rival, a person enjoying success or advantage, etc.,

These are two very strong words.  Unfortunately, they are also common words I hear often when speaking with a special needs family verses a typical one.  A few days ago we were on a play date with my daughter, her friend and her friend's mom at a playground.  A wide open, no fenced in playground.  The kind we aren't able to bring my son to because of elopement issues; same with the friend's family.  They have a special needs child also with elopement issues.  Our families are similar in so many ways;  two kids with one on the spectrum and one typical and thriving.  We were able to let the kids run and play where ever they wanted as long as they stayed where we could see them.  How refreshing to be able to sit down, on a bench and hold a conversation without running here or there or watching out for my son throwing the mulch or sand up in the air or throwing it at people.  It was a breath of fresh air. 

We started talking about each others hurdles in life and then the words came up.  I was asked if I felt the resentment and jealousy towards others like she had.  I stopped to think about it.  As of right now I am starting to feel at peace with our situation.  "It is what it is."  I heard this so many times that I can't stand it.  But, yes.  It is what it is.  This is our situation and I can be resentful towards other families and hate my life or learn to move ahead.  I'm sure when he gets older and my daughter starts to be able to hit milestones that he, as of now, won't be able to do, then I'm sure resentment and jealousy will rear its ugly head again towards those typical families who get to experience vacations, weddings, you name it without all the 'extra'.  I don't want feel that way but there will be a moment....I'm sure.  The only thing I know is he will be with me my entire life and he will always have hurdles in his life.  My job is to keep loving him no matter what and figure out how to help him, encourage him and keep my chin up.  It's up to me to keep the resentment and jealousy far, far away from this house and everyone in it.  I can't change others.  The only thing I can try to control is in this house and I choose to keep a positive frame of mind.  Some days are much more difficult than others but that's the same for everyone.  I'm the glass is half full kind of girl and I'm doing my best to spread positive vibes through the page on FB

So, my new friend, please try to dig deep and let go of the resentment and jealousy.  Your child is beautiful and your family is beautiful.  Wipe the tears and give yourself an extra hug because you are doing just fine.

Monday, March 19, 2012

Why Do People Like Parades?

Saturday, March 18th and the crowds started coming in at 10am!  We live in a quiet neighborhood by a college.  Any given day you can look out your windows to see people walking up and down the street or alleyway but today was crazy.  It was the annual St. Patrick's Day parade.  Since it was only a block away from our home, I pretty much insisted we all go.  The kids were all for it but Daddy-O was getting anxious about it.  We were watching all the people trying to park their cars into spots that weren't really spots and saw swarms of people walking up our alley and streets to get to the parade.  He asked me, "Why do people like parades anyway?"  He was not a fan because you never know how our son is going to be. 

I'm a 'the glass is always half full' type of person.  We have to keep trying.  It is a success if we can make it through half of the parade and I was going to go with or without Daddy-O. 

We started to get ready and B was the first one waiting at the door with a blanket wrapped around his little body.  "You need a blanket to sit on," I told him so he grabbed his favorite.  Out the door we went.  B found our spot and put the blanket down then 'invited' us to sit with him.  He sat for 2 minutes then wanted to take a walk.  Now, take a walk meant find a food vendor or gadget/toy vendor.  We knew this going in and told him no stuffed animals today.  Daddy-O ended up buying him a snow cone which was just ice with no flavoring but if you bought one, the vendor gave you a green beaded necklace so it was a win-win.  Food with beads.

Back to the blanket and the parade was starting.  Division 1 was difficult because B was determined to get a stuffed animal and I swear the street vendors kept swarming around us because B would politely say, "Excuse me, Sir?" and put his little hand up like he was calling them over and darn it....they kept coming. 

B chillin' with Daddy-O
Has this ever happened to you?  During Division 2 there was a woman who, in the parade, looked at my son and said, "Hi B!  Enjoy the parade!"  Mind you, we had no idea who this woman was but she definitely knew our son.  We asked him who she was and he didn't answer, we asked his sister and each other and no one knew who she was.  Still, today, I have no idea who she is or how she knows my son.  We eventually saw a golf buddy of my husband's in the parade and my daughter's friends who were in the parade as well. 

The highlight for my kids is when they throw candy.  We ended up bringing a huge pile back and as the pile grew, his want for stuffed animals diminished....thankfully.  We made it to Division 4 then he said, "Go home" so we did.  Always try to end on a good note.

After we were home, the parade was over and the swarms of people were back this time fighting to get into their cars and out of here asap.  I saw one man pee on a neighbor's fence...not cool but that's St. Patrick's Day for you.  I brought a load of laundry upstairs and watched out the window for a bit.  Daddy-O joined me for a second and I said, "Look, look at all these people dressed in funny hats with their kids and parents.  Generations are out there enjoying this beautiful day.  Have you ever seen this many people out in the neighborhood at one time?"  He said no.  Then I said, "This is why people like parades.  Community.  Family.  Friends."  I think he got it. 

Friday, March 16, 2012

Grocery Stores are Easy......Now

Every weekend it is routine.  We go to the grocery store together.  With our list in hand, he picks out the cart and away we go.

When he was younger, stores were impossible!  He would cry because of the lights, because the cart would stop moving, because he wanted EVERYTHING and because running in for 1 gallon of milk took way too long.  Many years of mini trips got us to this point.  Many, many mini trips but it was all worth it.

The produce department is always first.  He has picked out fruit that I have never tried before.  He wants me to buy a coconut but I have no idea how to cut the darn thing.  Fruit salad is one of his favorites to make.  Thanks to the Annoying Orange, he is freakishly afraid of pineapples.  Here he is trying to talk me into putting one in the cart for him.  We stood there for 5 minutes talking to them.  I didn't get one because he refuses to pick them up and put it in the cart all by himself.

The seafood department is filled with monsters!  Bet you didn't know that.  Monsters = Lobsters.  He loves to eat bay scallops by the handful.  Really.  He waits for them to be cool, scoops them up like he's eating popcorn and shovels them in.  On this day he chose crab legs and fish with 'slimey skin'.

Most of the time he still loves to ride in the cart.   He is getting so big this will have to end at some point.

At the end of our shopping trip he always picks out his prize for good behavior....a Kit Kat bar.  Then scarfs it down before his sister sees it.  Smart boy.

Tuesday, March 13, 2012

"Piece of Cake" for us....

My son had to have a tooth removed this morning.  When we met with the Oral Surgeon he checked out his tooth and said about how easy it was going to be to remove it.  "Should be a piece of cake."  Sounded good to us....real easy....some gas to knock him out.  The surgeon told us to talk to him about being a Jet Pilot, so he would wear the mask.  It was a huge mask, not like the little ones you wear when you get a cavity filled.    I called my sister and asked if her husband, who is an actual Jet Pilot, could send me a picture of Uncle wearing his giant mask.  I showed my son Uncle's picture several times a day so he would be excited about it....and he sure was. 

Since it was going to be a "Piece of cake" I didn't think anything of it.  When I was young, my mom took me to an oral surgeon to get a simple baby tooth pulled.  Right before I was to be put under the nurse went over what they would be doing.  It wasn't 1 little baby tooth but it was 4 baby teeth and 4 adult molars.  I was hysterical going under and was hysterical coming out; bleeding everywhere and mad at my mom for not telling me the truth.  She has apologized several times since then!  It's ok mom, not mad anymore ;)

Anyway, when I went into recovery to retrieve my son it was a sad sight.  There was this 8 year old boy with an IV hooked up to him. He was looking still 'out of it' yet he was holding on tight to his giant sized Mario.  My heart sank.  "Piece of cake", yeah right.  No matter what, it is a horrible feeling to see your child in that state.  Then I started thinking about tomorrow. 

Tomorrow is the day when my friend takes her daughter to get a scan to see if any tumors are back.  Tomorrow is the day her life may change yet again.  Last year I had a friend who's daughter fell and experienced extreme pain so they took her to the emergency ward.  Turned out it was a rare form of cancer and she was immediately admitted into the hospital to remove it.  Flash back to many years ago when I had a friend who's 5 year old was diagnosed with Leukemia.  I used to go over some nights to play with the girls and had to watch them give their little girl her meds, hidden in chocolate pudding.  Once I was there when she was scheduled for a spinal tap the following day.  She kept pleading with her parents for her not to go.  My heart broke.  Talk about the strength these parents had to have.  I can only imagine. 

See, what we went through today was a "Piece of cake" compared to my brave friends who had to endure the diagnosis of cancer for their children then had to go through the series of chemo, spinal taps and meds.  Please, do me a favor, say a prayer for my friend who has to go through another scan tomorrow.  She needs to hear good news.  She needs a "Piece of cake" day. 

Monday, March 12, 2012

My Love/Hate Relationship with YouTube

I have tried to block YouTube at least 5 times.  Each time, my electronically inclined son has figured out how to get back on.  How does an 8 year old with autism figure these things out?  No idea. 

His favorite things to look up are Mario Brothers, Angry Birds and the Annoying Orange.  Because of the Annoying Orange, he is freakishly afraid of pineapples now.  Click here for that one. 

Why I hate YouTube is because I do not appreciate the makers of the 'porn' that happens with Mario and Miss Peach or Bowser and Miss Peach.  We usually here 'the music' and yell, "Change it!  Inappropriate!"  He will then change it because he still wants to play with the iPad. 

Why I love YouTube  is because he also watches videos that kids his age made and is fascinated with them.  He has reenacted one made by a boy blowing up marshmallow peeps in the microwave many times. 

He starts with his explanation of what is going to happen.

Gets super excited about the Peeps getting bigger and bigger and bigger!!

Then I hurry up and give him the Peeps when they are at their largest size so he can watch them shrink.

Then he will taste them and say, "Yucky" then throw them away.  Same thing every time.  Yes.  It is a waste of money but the reenactments are priceless.

He has a hard time talking with his peers and prefers to walk away or leave the room so for now, I closely monitor YouTube so he can learn what kids his age talk about and what they are interested in. 

Over all I love his experiences with YouTube...BUT if you can tell me how to block it for sure, tell me please! 

Friday, March 9, 2012

My Son's Personal Anthem

Never underestimate the power of an individual with autism. 

I wanted to share this story and song with you.  Please keep in mind that we still have to concentrate on his words as they aren't always clear. 

A few months back my son was in the backseat of the car and starting singing.  After listening to him and asking several times, "What?  What are you saying?" there wasn't an answer for me.  He was content singing his song.

Fast forward to the next day.  He started singing it again but this time my husband, Daddy-O, was there.  After much discussion of what it could be we both started smiling.  We figured it out.  He was singing Firework by Katy Perry.  Both Daddy-O and I don't listen to top 40's and usually when my son is in the car he prefers silence.  We weren't sure where he heard it from.  We then looked it up on the computer and my son was a very happy boy going around the house singing and dancing.  I really listened to the words and started to cry. 

Imagine a boy with autism singing these words.  Every time I hear this song I think of my son and how far he has come and how far he still has to go.  This is my son's personal anthem.  He picked it out and I believe it holds a message for us to keep going and don't give up on him because someday he is going to blow us away

Do you ever feel like a plastic bag,
drifting through the wind
wanting to start again?
Do you ever feel, feel so paper thin
like a house of cards,
one blow from caving in?

Do you ever feel already buried deep?
6 feet under screams but no one seems to hear a thing
Do you know that there's still a chance for you
'Cause there's a spark in you

You don't have to feel like a waste of space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe you're reason why all the doors are closed
So you could open one that leads you to the perfect road
Like a lightning bolt, your heart will GLOW
And when it's time, you'll know

You just gotta ignite, the light, and let it shine
Just own the night like the 4th of July

'Cause baby you're a firework
Come on, show 'em what you're worth
Make 'em go "Oh, oh, oh"
As you shoot across the sky-y-y

Baby, you're a firework
Come on, let your colors burst
Make 'em go "Oh, Oh, Oh"
You're gonna leave 'em all in awe, awe, awe

Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
And now it's time to let it through-ough-ough

Monday, March 5, 2012

We're all a bit 'Weird'

Have you met a perfect person?  Ever?  I haven't.  We're all a bit weird.  Everyone has quirks!  Children with autism/aspergers are teased all the time because of their differences....when we are all different and that is what makes us special.  I'm joining in with HomeStyle Mama, Ancora impartial, One Tired Mama and Parenting with Asperger's Syndrome in sharing with you my weirdness! 

Please take a moment to share at least one of your weird tendencies or quirks and post them at the end of this blog.  A young man wants to know.  It may make him feel more 'normal'...whatever normal' is.

OK.  Here we go.

I put mustard on almost everything I eat.
I have a big nose.
I hate looking at myself in the mirror.
I wore Army fatigues for a year while in high school. The 80's man.  Thought I looked so cool with camouflage parachute pants, white t-shirt, black high tops, and an official Army jacket with my last name on it.  The same one my dad wore when he was in the Army.
Speaking of the 80's, Madonna gear....need I say more.
When I'm home I don't like to listen to the radio.  Instead I'll put in an old movie so I hear people talking. 
I memorize movies and pretend I'm part of the cast.  Beetlejuice is my #1.  Pretty in Pink is #2.
I only fold laundry if it is piping hot from the dryer.
I play with the kids and watch TV in the basement but will NEVER sleep down there.
I hear ghosts.
I don't trust anyone but my husband.
When I dream about being in a car crash I receive unexpected checks in the mail.
One time my husband and I had the same exact dream and a joint check came in the mail.
I'd rather clean toilets then do dishes.
The older I get, the more moles (or beauty marks my Mom used to tell me) I get.  YUCK!!
I love being alone or alone with the kids.
My favorite hobby is to repaint a room in the house.
I think Sponge Bob is freaking funny.

I'm sure there will be more when I publish this but that is all for now.  Please share at least one of your quirks or weirdnessess ( I like to make up words also) with us.  A young man wants to feel 'normal'.