glitter

Thursday, July 18, 2013

Splash Station

It was Mitchell's last full day of Summer Camp so I decided to go out with a bang and bring the other 3 to Splash Station Waterpark in Joliet.  We have been there before and it wa totally doable so I figured what the heck.

Well it turned out to be a typical Ivey outing.  Grace and I hung out the whole time, Steven sat in the shade fully clothed including socks and gyms shoes and Caroline found a new BFF within 5 min of arriving.  I really though Steven would change his tune once he realized how hot is was (95 degrees) but he didn't.  He sat for 2 hrs just kinda stairing at the ground then he started to play with my phone. He really has been making the effort to get out more but I have been pushing him really hard so I figured 2 hrs was long enough to suffer.

Grace quickly learned that in order to go into the deep end she needed to wear her life jacket and off we went, having races and jumping contests and swimming all over the place.  We attempted the lazy river " they called it lazy because it is really sloooow" Grace says as she moves her arms in front of her slowly in a waving motion, but it was quite crispy above water for too long so once around and we were done.

Caroline introduced us to her friend Megan (pronounced Maygen) then referred to her as Maggie and later discovered her name was Marilyn.  Caroline has never been good with names.  It is really a family joke.  Caroline & Marilyn were hungry but I really didn't feel like starting to feed the whole water park so I told Caroline to play for a bit more and then we will eat.  Sure enough she was still hungry a bit later and after hearing how Marilyn had a season pass while she is here visiting her mom and half sister and she lives 4 hrs away with her dad in the country but not sure of the town she lives in and comes to visit her mom during the school year some weekends when her mom is not busy yep I bought her a snack too.  She seemed like a really sweet girl and fit the profile perfectly of the kind of people Caroline befriends all the time.  She asked if we were coming back again tomorrow but I told her we couldn't and I was sad when we had to leave her at the Waterpark.  Later tonight when we said our prayers I added Marilyn to our friends we prayed for and in perfect Caroline fashion she said "who's Marilyn"?  That's my girl alright.

We had a good time all around I think.  Steven didn't complain about the day so I think he took it matter of factly that he sat and watched everyone have fun in the water because that was absolutely not something he wanted to do.  Caroline and I worked on our tans and Grace enjoyed having just me to herself and not having to share with anyone.

When I start to feel bad that Mitchell misses out on days like today I remind myself that he would not have had fun.  He would have been on complete sensory overload and would have wanted to just run around the place and would have had no where to go to cool off  or to have some well needed quiet time.  He had a much better suited day at Tri-County SRA summer camp. It was swimming day for camp too.

Monday, July 8, 2013

Fly On The Wall Friday

Fly On The Wall Friday is having a little trouble getting out on Fridays, sorry.




Bass Pro Shop Grizzly Bear

Grace yells, Mitchell throws, and this what becomes of my Nook

Who does not love giant quesadilla lips?

Oh so funny when Mitchell climbs out of his seat in McDonalds
drive-thru and bangs on back window at other customers         

Great fun!

Fathers Day

We celebrated Fathers Day at our house as has been the custom for many years but it was even better since my dad was able to be here in between hospital stays.  I have recently decided to give up control over parties at our house and welcome the help - this year I went a little over board by only supplying Taco Salad, Eclaire Cake and Ice Cream Novelties - and everyone bring an item.  It turned out to be awesome!












Saturday, June 15, 2013

Fly On The Wall Friday

Chillin in body sock with iPad

Mitchell decided this was a good safe place for his sucker while jumping on the trampoline

Move it Sista

Bottom side of the couch is a great place to store my things.

It was only a matter of time.


Monday, June 10, 2013

Super Funny Article that screams my name - not for the weak stomach

http://www.huffingtonpost.com/kim-stagliano/the-crappy-life-of-the-au_b_37742.html


Kim Stagliano

GET UPDATES FROM KIM STAGLIANO

The Crappy Life of the Autism Mom

Posted: 01/03/07 05:05 PM ET

Well, that title should set off alarm bells in the Neurodiverse (ND) autism world.
Autism is like a box of Bertie Bott's Every Flavor Beans (from the Harry Potter books.) Some autistics got the raspberry cream or root beer flavor. They can speak eloquently, write blogs, move out on their own, marry, have children and manage their autistic traits. Others with autism, like my three girls, got the ear wax/vomit/dog poop flavor. They need help 24/7 to navigate the world. When I talk about autism, I mean the version that my three girls got. I'm not talking about the sort of autism that encompasses quirky kids with some social deficits who are otherwise brilliant.
The ND community tells me and tens of thousands of other parents that we are disrespecting our kids by trying to help them. The ND blogs berate us as wanting to change our kids because we don't accept them. Here's a "taste" of what autism looks like in the Stagliano household. Would you want something better for your kids?
Twice last month, we had a "crapisode." What is a crapisode? (This is where you might want to stop eating and put down your beverage.) My 10 year old (#2, appropriately for the purposes of this entry) pooped in the toilet. That is reason to cheer, believe me. Toilet training is a major issue in my section of the autism community. Our kids can wear diapers into their teens and beyond. So Miss G pooped. Hooray! But Miss G forgets to flush. And she rarely closes the lid. Not hooray.
Miss Peanut, my 6 year old, seems to believe that being a Virgo means she simply MUST swim in any puddle larger than spit. The toilet is like an Olympic sized pool to her. So Peanut goes into the toilet after Miss G has had her, ah, success. Peanut flings kaka everywhere and gets it all over herself, the floor, the walls, the tub, the baseboards and the window. Wes Craven could not film anything scarier than what I saw that school morning, 35 minutes before the bus was due to arrive. That's a "crapisode." It happens in the blink of an eye while I'm washing dishes or doing laundry. I'm alerted by a splashing sound that drops a brick into my stomach. Miss G doesn't understand to flush and close the lid. Miss Peanut doesn't realize that a face full of feces is rarely considered a way to amuse oneself outside of the fetish community.
I will never stop trying to help my girls recover from their autism. I can not tell you what recovery means. It varies by kid and according to God's grace. If recovery means only that Peanut understands she should sit on the toilet, not play in the toilet, I'll take it.
Recovering your kids doesn't mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.
Maybe we need an expanded vocabulary. The ND's can keep the word autism and my kids get a new label. Fine by me. Just don't tell me to give up on my girls and accept their version of autism (remember the Bertie Bott's beans) as simply a different type of personality. Because THAT'S a load of crap.

Chef Mickeys

Sorry, when I use the laptop the apostrophe/quotation does not work.  Bare with me.

My Disney World 2013 posts are going to be all the over the place because I will write when I find time.


I am feeling very sad that Mitchell and I need to sit out the special dinner at Chef Mickeys tonight.  We tried breakfast at Ohana on Monday and lunch at 50s Prime Time Diner yesterday and they were both a bust so with a heavy heart I removed us from tonights reservation. :(

Mitchell is just chillin with the ipad, juice & freeze dried pineapple and Ive got the computer and Criminal Minds on the TV.  Steve facetimed me so I could see the kids having a fantastic time and he reluctantly brought my camera to capture the magical moments.  Here are the good times we missed but I know the fun would have been on the backburner if Mitchell melted down in the middle of it.  I gave Steve a brief rundown of the camera before, his nighttime picture taking is a little rusty.












Fresh Air

If you drive by our house and you see the windows open like this it is a good sign Mitchell is not home.
Today Mitchell started ESY (Extended School Year) in the morning then onto Tri-County SRA afterwards.  It was such a good feeling to be able to walk around the house,  remove the safety wedges from all the windows and open them wide.

In years past Mitchell would only pop out a screen on a window if it was open all the way and he REALLY wanted to get out but for the most part it was not an issue.  Then he would try to get out more often but was not strong enough to lift the windows up further so as long as it was locked or only open a bit he could not get out.  Starting last summer he began to raise the windows himself and even unlock them first if he was determined enough.  He has popped out his bedroom window on the 2nd floor and sat watching the kids outside with his feet dangling down and even climbed out our bedroom window onto the new roof over the patio.

Starting this spring we installed wedges on all 20 windows and keep the windows open only far enough so Mitchell cannot get his head through.  As you can imagine not much air comes through this tiny opening.  If the wind is blowing right we get a little breeze but mostly we get hot, sticky air.  At night we cannot leave the windows open at all so even if it has been nice all day the air conditioning comes on because there is no air circulating at all without it.

On a morning like today, when I know Mitchell will be gone for the majority, I can open the windows wide and get some nice fresh air and start to feel normally for a few hours.

Saturday, April 20, 2013

Just Another Saturday

Today was a good day for stripping outside, popping out window screens, climbing fences, flipping couches, peeing down air vents and pooping on floors.  Today was AWESOME as you can tell.
I was gone for the afternoon holding a 10 day old baby and you can bet by the time I got back Steve had made plans to go out.  He was D-O-N-E.

The iPad volume is up as loud as it can go while Mitchell listens to a love song on some talking cat app Caroline installed.  He is starting to sing along to some of the words so truthfully I do not mind hearing the song for the 100th time this week.  It is just Grace, Mitchell and I tonight and I am trying to catch a TV show or 2 before all hell breaks loose again.  The lights are all turned off and I am positioned on the couch waiting for Mitchell to pull me up and lead me out of the room as a distraction so he can tip the couch on its side again.  SIGH.

Days like today feel like they are lasting forever and then all of a sudden it is time for bed.  I can only smile about it and relax when I get the chance.

Monday, April 15, 2013

Being a Little Selfish

Forgive my typing today, my Quotation/Apostrophe key is not working.


Last night Steve tried to tell me about a race somewhere that a car, maybe a winner - I dont know, had Autism puzzle pieces covering it.  I said something like Oh thats nice and then continued with really he supports Autism Awareness?  I can put a bunch of stickers on my car and drive around supporting Autism Awareness too but its not going to help me, not going to help Mitchell.  Its not going to help him get more therapy or pay for it and its not going to help me spend more time with the other kids instead of watching him 24/7 or pay to hire someone to do one or the other or even help me find a responsible person I feel is suited to watch him.


At this stage of the game I really dont care about supporting awareness on a grander level.  My concern is  Mitchell, here & now.  It may be selfish but he is my cause, not Autism in general.  I have always found it funny that there is a saying - If youve met 1 child with Autism, youve met 1 child with Autism.  Meaning they are all different, no 2 children have the same traits all together.  But yet we are lumped as a community of Autism and somehow supposed to support all things Autism and I have trouble with that.


For the last 5 1/2 yrs I have searched for a child like Mitchell.  Through individual therapies, play groups, school and social outings I still havent found anyone who is the same.  At first I was looking for support from someone who new exactly what we were going through and could relate on all levels. Then I wanted to find someone with maybe an older child who could provide us with hope for a bright future and tell us everything was going to be ok and get better, much better, so we could sleep easier because it would all be fine.  Neither of those searches turned out very well.  He is one of a kind, all children with Autism are one of a kind.  Typical children are too, dont get me wrong, but their uniqueness usually helps them thrive and move ahead in life.  The unique traits a child with Autism have usually hinders their ability to function in the world and limits their independence.


Lately I have become an Its Us Against the World type of person.  Its what gets me through the day and helps me sleep at night.  If I waited around for other people to advocate for my son, he would miss out on much needed intervention.  What happens in our world - our city, home, therapy and school - is what impacts Mitchell the most - not people understanding differences better or deals being made in governments to swap out what they feel is best for people with disabilities.  I understand that exposure and money is what makes things happen on a larger level but that is someone elses fight.  My fight is for Mitchell and my family.

So......this is where my selfishness comes in.  Since this is all about us, which I would have it no other way - I have noticed myself distancing from others who dont share my (our) views on what is best for our situation.  All his lumping of people with Autism together seems to blur the lines of the extreme differences amongst them.  The cause of Mitchells Autism, his symptoms and traits are his, no one elses, and too assume you would know what is best for him without being his parent, teacher, family member or therapist is close to like the saying goes ........makes an ass out of you (not me).  I will be selfish and choose not to share or engage anymore and I will not continue to justify my words or actions to anyone else, I spend enough time trying doing that in my own head.



I believe all parents deserve to be a little selfish at times.

Saturday, March 30, 2013

Fly On The Wall Friday

Grace hasn't grasped the value of money yet and I have no idea where she got that 20.

Cleaning day.  Guess which pile is mine? 
It's a game of hidden pictures that fell out of  Mitchell's chair.  Yes from inside Mitchell's chair.
Can you find: pink marble, sliver marble, clear marble, basketball ramp, starburst wrapper, Trio, crayons, french fry, booboo buddies, bacon, cheerios, fruit loops, goldfish, sucker sticks, cheez-its.  Anything else?

This is what happens when you slam your head into the wall, floor and sofa arm enough times.

This is what happens to mommy when she tries to stop the slamming of the head.

Wednesday, March 27, 2013

Happy Birthday to Mitchell

Today Mitchell turns 7.  The time just flies by these days, it feels like he just turned 6 last week.  Last year at this time - right about the time I am writing this post - a DCFS agent was at our house talking to my other kids, Steve & I about things that go on around here. Things have really changed since then and yet it all seems to stay the same.

I have become more outspoken on my feelings of Autism, Mitchell,  and how I feel about people who do or don't support us in general.  I have chosen to remove people from our circle due to their lack of understanding and support they have shown and have gained friends and support of others at the same time. It's kind of a funny thing having one aspect of our lives dictate how we live and who we spend our time with but I think everyone does that in one way or another, it just may not be as concrete as how it is here.  I don't struggle anymore with feelings of regret of wat could have been or cry for the future I hope Mitchell will have (or the rest of us for tat matter.)  We do what we can to get through the days and feel confident with our choices we make that they are the best for Mitchell and our family.

In the last year we have changed up our therapy services to more home based and directed towards play skills, socializing and food. It has really made a difference with me being home after school now instead of running off the therapy with Mitchell 4 days/week, having a sitter here, and having to cram homework and dinner into the evening around Steven & Caroline's other activities in & out of the house.  Feels like we actually have a handle on things and all the kids seem happier.

This morning we said "Mitchell it's your birthday" and he responded "Mitchell it's your birthday".  Not quite what we were looking for but last year we would have been lucky to even get a nod in acknowledgement from him.  Sometimes it appears things are happening so slowly but on days like today when we look back a year and see how far Mitchell has progressed it is an amazing feeling knowing he is continuing to grow and progress.
Mitchell March 2011

Mitchell March 2012

Sunday, March 24, 2013

Let's Go To The Movies

Earlier in the week we decided to take the while family to the movie theater to see "The Croods".  Normally we would not have even entertained the thought but there was a screening for people with special needs and their family & friends so we thought we'd give it a try.  It's Saturday and off we go to the movies, minus Steven but plus Abbey & Andrew.  The ticket price included popcorn but we didn't think we needed 7 so we settled for 5 and took our seats, filling up the 2nd to top row.

Mitchell immediately started squirming and Steve brought him to the potty, returning as the movies started promptly at 10am.  No previews is part of the "sensory considerate" screening - AWESOME!
Up, Down, spinning around.  the time was not passing fast enough.  The popcorn was not a good enough distraction and I guess the move just did not grab his attention.  The boy in front of us was watching The Wiggles on his iPad and didn't seem to care Mitchell was kicking his seat as he was in turn kicking the seat in front of him.  It was quite a sight to see (and hear) what was going on the movie theater this morning.

About 20 minutes into the movie Mitchell launched his juice cup about 5 rows up and wacked a lady in the back of the head.  Steve went to see if she was OK and retrieve the cup and the lady said she was fine but it scared the S-H-I-T out of her.  She was there with her own special needs person and was not judging us at all.  It's so nice to be on equal footing at times and be OK with it all.  Steve had Mitchell on his lap, then on the floor playing my phone>  we caught a glimpse of something being tossed over the seat and we're like "What the heck?".  His shoe, of course, lands on the floor in front of the kid with the iPad - he doesn't notice at all.  I'm pretty much done by now so I decide to cut my losses and let Steve enjoy the rest of the move with the other kids.

As I grab Mitchell, my purse, his juice cup, his coat and 1 bag of popcorn and step into the aisle the bottom of the popcorn bag busts open and kernels spill all over the ground.  I laugh (deliriously) and fold over the bag, heading for the exit.  While we were stopped by the outside doors putting on Mitchell's coat a worker graciously offers me a refund and tells me to wait as he retrieves $13 from the register.  I said it wasn't necessary but took it none the less.

I drove to McDonalds for fries but they weren't serving them until 11.  We got drinks and went to a park to play until the movie was over.  It ended up being just a fine morning for Mitchell, he was happy in the end.  He was not put off by the frustration at the theater at all and we will out it down as one more thing we had to try to see that it wasn't going to work for us right now.

Friday, March 15, 2013

Fly On The Wall Friday

Talking about Grace's birthday coming up Steve says everyone should donate to her college fund (typical Steve) and Grace chimes in "I'm not going to college, I'm too little."  Steve then tells her not now, when she gets older and she asks "like when I'm 4?"  Then she went on to say she can't go by herself so mommy will have to go with her and so will daddy and Caroline, Mitchell & Steven.



Steve: Big girls don't need binkies.
Grace pointing to herself:  Well this one does!



Driving Caroline and her friend to Brownies the other day Caroline is talking about her Pet badge and the friend chimes in about her dog an dhow silly he is and then I hear her say "my dogs chews on his private parts"  and then they both start giggling.  Oh geesh.




Good spot to read his book

Everyone has a talent

Steve decided it was time it remove the child safety locks around the house.....

Utility room lock is back on now.


Playing in the rain


Saturday, March 2, 2013

Fly On The Wall Friday

Welcome to the 1st edition of Fly On The Wall Friday where you will see and hear things you would have if you were..........that's right  a Fly On The Wall hanging with the Iveys.







Just leave me alone.

Lizard Flashcard

Mitchell's Lizard
Everyone is buckled up safely.

Wednesday, February 27, 2013

Caroline's 8th Birthday

Caroline's birthday has always been a bit of a pickle around here.  Being 2 days after Christmas we have a hard time deciding when to celebrate her birthday with family.  Having a kids party is easy since  everyone is off school and looking for things to do during the day anyhow but between Christmas, New Year's and vacations Caroline's birthday turns into a multi-week celebration.  Not like she's complaining tho.  This year we had the family party scheduled and the flu hit our house in the days leading up to it.  It was almost halfway through January and we were booked up the rest of the month.  Cake was ordered and Caroline was all geared up, what was a girl to do?  Have a travelling birthday party of course!


On Saturday Jan 12th Caroline, Grace & I headed out in the morning to pick up the special cake from a friend of mine who has a home-based business.  We drove the Aunt Sandi's and awaited the decision on where we were to meet the rest of the Ivey gang for lunch.  Grandma & Grandpa Ivey were recovering from being sick as well so they weren't going to make it.  We played checkers at Aunt Sandi's, I enjoyed some hot coffee and the girls were filled with cheese puffs.

Around lunchtime we met at Orland Patio and had our party there.  It was perfect, there was plenty of room, we could be noisy, everyone got to eat what they wanted and I didn't have to clean before and after the party.  Even the boy cousins enjoyed themselves.  The manager came over and admired the cake as well, it was a cool Monster High cake.  As we left Caroline said she wanted to have her birthday party at Patio next year too. AWESOME!









We stopped at home for a rest before the Steele's were going to be home and ready for us.  Caroline changed into one of her new outfits from earlier and then we travelled with our half eaten cake to sing Happy Birthday again.  This time we had ice cream as a bonus and more presents of course.  This is turning out to be quite a birthday.



We wrapped it up at Uncle Jimmy's and finally made it to Grandma & Grandpa Steele's house.  I was all caked out but I'm pretty sure the girls crammed a few more bites in.