Wednesday, June 19, 2013

Well. That Was Easy.



I've personally experienced I.E.P.'s from hell when James was alive. Somehow it didn't sink into the brains of the I.E.P. team that a child on oxygen shouldn't be forced to do gym. Shouldn't have his wheelchair taken away. Be forced to attend school when he is sick and sending truant officers after him when his O-sats were below 70. You try getting out of bed when you sats are that low.  

That was the old school district that Josh went to. That was the same school that did nothing when a bully peed on him. It didn't matter how long we yelled. We weren't heard. 

But then a awesome thing happened. Our sewer line burst and we had to move. We didn't think it was awesome at the time but it turned out to be a very happy accident. The only house we could find was in a completely different county. 

What a difference a different school district makes. Josh went from B,C,D student to a strait A student. He made friends. The school dealt swiftly with any bullies. Problems with teachers were handled. Josh found himself to be the salutatorian of his class when he graduated last year. Josh did the work but the school was the perfect environment for him to flourish. 

Even though my husband drives 45 minutes one way to go to work we decided to stay put after Josh graduated. We started the girls in the Pathways special education preschool program in late April of 2012. Madeline and Natalie attended the same class until August of 2012 which included the E.S.Y. Madeline phased out of the pathways program and into special education Kindergarten. 

Our home district of Canisteo-Greenwood made a deal with neighboring district Jasper-Troupsburg to combine their special education Kindergarten together. This meant that Madeline would be 40 minutes away. We also found out that the Pathways program would be moving out of the Canisteo-Greenwood school district to the Hornell school district because Canisteo-Greenwood was moving their middle school into the elementary school building to save on costs. Natalie would have to travel 30 minutes away in the opposite direction to attend school. 

Both girls did awesome even with the changes. When I say awesome I mean awesome in the fact that they did their best to adjust to a lot of change. Two different buses. Two different wake up times. Two different schools. With my husband 45 minutes in one direction..Josh off to college 2 hours away..Madeline 40 minutes  and Natalie 25 minutes in another AND James recently passing away it was like our life was scattered to the four winds. 

This meant not going to a lot of school functions. It made picking up sick children difficult. That was another thing. Madeline had developed a chronic cough in November. It's June now..it still hasn't gone away completely. She missed over 30 days of school due to being sick. It meant Natalie had to miss days because her school let out earlier than Madeline's. Our doctor's office is (lol) 45 minutes away. With no one to babysit we had zero choice. 





Our life has never been easy. I mean..who really has an easy life? It always seems like something is going to go wrong. So when I.E.P. time came up I thought the looming shoe would drop right square on our heads. 

Two little girls with autism. 

Two little girls who both have their own unique needs. 

Two little girls with autism require two I.E.P. meetings. 

I.E.P. meetings set fear into the heart of every special needs parent. 

We never quite know which way it's going to go. 



Will the I.E.P. team be a soul eating guinea pig demons or will they truly be there for your child? 

There are some a shit load of horror stories out there. Many of them come from my friends..not a Google search.

Think special education is standardized across the United States? Think again. The Truth About Special Education In Texas, Y'all.  

It's pretty bad when you have a whole label on your blog devoted to School Sucks.

Every been in a room full of people and felt invisible? How about when it's your child's I.E.P. meeting

By the way all those issues your child has are normal. All kids do that

Every had to pull your children out of school just to make sure they are safe? Yeah. This momma had to.

You can see why I was ready to wage war if I had to. But the thing is I didn't have to. All my issues were addressed and resolved. 




Inclusion? They were implementing a new program between S.E. & N.T. classes anyway. I knew Canisteo-Greenwood was continuing to ship out their special education students to Jasper-Troupsburg. My concern was Madeline starting 1st grade. I didn't feel comfortable with Madeline switching back to Canisteo-Greenwood after first grade. The special education director said Madeline and Natalie can continue with Jasper-Troupsburg for the remainder of their schooling if I'd like. We discussed her fear of sounds and distractibility. I suggested noise cancelling head phones. They countered with sound muffling headphones during certain class times as they didn't want her to become desensitized to sound. They were the ones who noticed a very strong possibility of ADHD. Our psychologist missed it because we were in a secluded room with only two adults. Madeline and Natalie will be in the same class next year so they can work on proper socializing between them. They adjusted Natalie's speech therapy for more one on one sessions vs. group because she works one on one better. They increased the amount of PT for Madeline to address some balancing difficulties. We made new goals for potty training for both girls and trying new foods. I was completely satisfied from beginning to end. For Madeline's meeting Madeline's PT even took care of Natalie so we could attend. 

Why is this sort of treatment not the norm? Please keep in mind this is a very poor school district that has made all sorts of cuts to every program. They haven't cut the treating people like human beings part out. 

Why does it seem like so many schools work against the parents and students instead of for them? 

Why standardized public education not standard? 

Why are public servants not working for the public? 

Do you have a I.E.P. nightmare story?

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Monday, June 3, 2013

The Space Between



The Space Between/ The tears we cry/ Is the laughter keeps us coming back for more 

Right now, the sunshine streams through the window down onto my bedspread making speckled dots of light through the leaves of the big maple out front. I'm waiting for the girls to get home. 

I'm hoping that she comes home her sweet self. 

Maybe today we can avoid a meltdown. 

My thoughts wander. 

I think about how beautiful she is...both my girls are. 

I think of how I love them.

 Miss Natalie. 

With her long blonde hair and deep green eyes I know she is going to grow into a beauty. Her huge smile is her best feature.

She's the one I worry about the most. 

She is my wee little wanderer. 

My risk taker. 

The only thing I've ever seen her afraid of was a blow up bouncy castle and our blender with a boat engine. 


We're strange allies/ With warring hearts/ What wild-eyed beast you be 


She's my mean sweetie pie. 

Whether it's happiness or frustration every fiber of her being shows it. 

She's my hitter, my biter, my skull basher. 

My arms often have bruises, scratches and bite marks. 

Some of those of from her loving on me..some of those are from her hurting me.

Natalie is non verbal but has very much to say. 

We find ways to communicate through conventional sign, words she makes up, sign language she makes up, her expressions, and sometimes when we are really luck a word or two spoken. 

When she can't speak she gets frustrated. Usually I'm the target of her frustration. 

The Space Between/ Where you're smiling high / Is where you'll find me if I get to go. 

Natalie loves all thinks sparkly and pretty. She's a girlie girl. A princess. A ballerina. A fairy. 

She lives not only in this world but of another all her own. 

Natalie is a little ball of energy that never stops. From the moment her feet hit the ground it is go time. 

Natalie rather sleep on the floor than in her bed so she can feel when someone gets up. 

While both girls love music...Natalie FEELS the music. 

She dances in the rain twirling and twirling. 

She'll run down the road just to pick flowers. 

If I'd let her Natalie would live in water as if she is a mermaid. 

Natalie is right there with me whenever I'm in the kitchen. Her favorite thing to make is homemade bread. 

The Space Between/ The bullets in our firefight/ Is where I'll be hiding, waiting for you 

Natalie is my quirky one. She loves to wear at least two layers of clothing at all times.

Long pants. Long sleeves and usually one of my shirts on top of that. Her hair must be down. 

She must have sunglasses on at all times. 

You will most always see her with her blanky and sippy cup. 

She can never leave a room without taking something with her. 

These things travel everywhere with her except school. 

School doesn't allow her these comforts because, "No one else drinks out of a sippy cup there." 

It took me 6 months to break that habit per the school rules. 

I would always console her with. "You can have it when you get home." Now she understands..but at the same times she doesn't. 

She's full of high pitched squeals and ready with hugs and kisses. She has just learned how to say bye and wave. She constantly says hello and good bye slamming her door, my door, Josh's door, the bathroom door. If there is a door it will be opened and it will be closed. REPEATEDLY. 

She'll eat her weight in Chobani Greek Yogurt. At least it's healthy right? 

Many times I'll feel her hand fall into mine to take me somewhere. She'll want to gather leaves off a tree or flowers off a bush. But mostly it's to places I never expected I'd be. 


The rain that falls/ Splash in your heart/ Ran like sadness down the window into your room Take my hand/ Cause we're walking out of here/ Oh, right out of here/ Love is all we need here The Space Between/ What's wrong and right/ Is where you'll find me hiding/ waiting for you The Space Between/ Your heart and mine/ Is the space we'll fill with time/ The Space Between

No matter what other people might find odd about her I let Natalie take the lead. She could care less about anyone who isn't her world. You just have to lucky enough to be in it. She chose me. So maybe somewhere in the space between normal and weird is where we live. Maybe the space between wrong and right is where you'll find me with Natalie.

The Space Between... The Dave Matthews Band.
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Tuesday, May 28, 2013

Confession Time: I Used To Be Anti-Vax




Before you start throwing rotten eggs please hear me out. I just had my first baby at the age of 25. Even at that ripe old age I only knew how to take care of a new born out of parenting manuals and pamphlets. One of the first pamphlets I ever received was about Autism and vaccinations. It was like foreshadowing. I put the pamphlet aside and carried on with a very difficult pregnancy. 

Madeline wound up being born at 33 weeks. When she received her first shots I didn't even protest. Quietly I signed the papers while I watched my baby lay in the incubator. Tons of machines hooked up to her little body. Two weeks after she was born I had to go into the hospital for emergency surgery. My gall bladder quit on me. It was loaded with 33 gall stones....yes the same number as the amount of weeks Madeline was born at. 

At year one things got pretty awful. She was late sitting up. Not walking. Not talking. Barely smiling. I learned a new word: meltdown. That's when I stopped the vaccinations. I delayed and delayed because suddenly that pamphlet came to mind during 3 hour meltdowns. 



The pamphlet was good for a few things. I knew the signs of Autism and what to do. The trouble was I couldn't convince anyone else especially since I was delaying vaccines. But then I started really thinking.

 I thought about how many times vaccines had saved James life. 

I thought about how many lives vaccines saved. 

I thought what if Madeline contracts polio or Hibs disease. 

Things that are preventable. 

I knew there wasn't a cure for Autism. 

I knew..even with everyone poo pooing me Madeline had Autism. For better or for worst. But the one thing as a parent I could do was vaccinate. I would never be able to live with myself if my child died. After all...James was a factor. So I vaccinated. I pushed and pushed and pushed both my doctors and my family to take me seriously. 



Madeline is now 6 and my second little girl is 4. Both of them were diagnosed in April with Autism and other disorders related to Autism like ADHD and pica. I'm much more educated now about Autism. I no longer believe it's vaccine related. I was never part of the Anti-Vax movement. I was just one scared mom given some propaganda that seemed very real. Once my eyes started to open I now see Autism in my family, my husband's family and even myself. James may have passed away but because of vaccines and other miracles of modern medicine we had 17 good years with him. 

In the end, it's all a matter of personal choice.
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Friday, May 24, 2013

Will The Real Slim Shady Please Stand Up???

May I have your attention please?

May I have your attention please?
Will the real Slim Shady please stand up?
I repeat, will the real Slim Shady please stand up?
We're gonna have a problem here..

I'm white. 

I'm from a lower middle class American family. 

I married into a lower middle class American family.

And I feel like a minority. 

How?

It's really quite simple. 

I have two special needs children with Autism. 

It's the return of the... "Ah, wait, no way, you're kidding,he didn't just say what I think he did, did he?"

When I go anywhere with my kids people stare. 

They talk behind their hands. 

They say rude things. 

Some places my family just isn't welcome. 

I can see the disgust in their eyes. 

I can see ignorance.

I can see the fear as they move away quickly. 

Special classrooms.

Special parking spaces. 

Special bathrooms

Special buses. 

Special organizations to fight for human rights.

Tolerated but not accepted. 

Videos go viral when someone is nice to autistics. 

Stories of autistics doing normal things make the news. 

It kind of feels like segregation made sweeter with the term "special needs".

Words like "integration" and "inclusion" only seem like words Martin Luther King Jr. would use. 

Just like someone can not wash a color off their skin our kids don't grow out of their "specialness".

My children make people feel uncomfortable because they are different. 

But the word special after all makes discrimination okay. 

As parents we feel discrimination from adults with autism. 

We aren't black enough. We aren't white enough. We are simply grey. 

We are judged. We are blamed. We are privileged. 

We are the reason our children "elope."

We are the reason why our children die. 

We are abusers. We are users. We are evil.

We don't say this right..we don't say that right. Use this word..not that word. 

We must kiss ass till we are blue in the face or....

We hear, "It about the children...it's not about you. You know nothing of pain. You know nothing of our plight. You have too much of a voice. You don't say enough. You want us exterminated because you want a cure. You hate your children because you hate Autism. You're the reason your children wander..they are running away from you."

If you say the above things. Guess what? I want my child to be the exact opposite of you. OPPOSITE. In capital letters. 

I'm like a head trip to listen to, cause I'm only givin youthings you joke about with your friends inside your living roomThe only difference is I got the balls to say itin front of y'all and I don't gotta be false or sugarcoated at all

Never mind the fact that parents are the ones that fight for everything that you have. They are the ones with no sleep & getting head butted by a 4 year old because that's how she says "I love you or I would like a drink of water". Never mind that living with an autistic person is like perpetually tiptoeing on eggshells. Never mind that you love this person more than yourself and would give anything to alleviate pain. Never mind all that cuz it doesn't matter what you feel. 

And then other parents with different ideas. 

We hear: "Vaccinate. Don't Vaccinate. Cure. No cure. Gluten free is the way to be! Don't limit your child's already limited diet! Tulips in Holland! Tin foil hats! Autism Speaks! Autism Speaks is evil! Light it up blue!! I hate autism awareness!! Bleach enemas!!!!!!!" 

Reasons for Autism: "Genetics, vaccines, GMO's, chem trails, gluten, mercury, fracking, doilies, kumquats!!!"

I honest to God don't care how you parent your child. If you don't have children..and don't have Autistic children...you don't have snowball's chance in hell of influencing me. 

So, will the real Shady please stand up?

And put one of those fingers on each hand up?
And be proud to be outta your mind and outta control
and one more time, loud as you can, how does it go?

I feel like a minority in a minority group not accepted by my minority group. To hell with that. Actually..I feel like a white rapper. No one takes the white rapper seriously until he says something so true it offends everyone both black or white..and even shades of grey. Truth is, you don't know what it's like to be a minority till you are one.  Truth is, you don't know what it's like to get bombarded from all sides until you are sitting where we are. 

I'm just trying to be a parent here. Everyone else can shut the fuck up or get out of my way. So go ahead and be offended..but I promise you there are more out there just like me. 

Ha ha

Guess there's a Slim Shady in all of us
Fuck it, let's all stand up.
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Monday, May 20, 2013

Over And Over Again #MikaelaLynch

Madeline & Natalie

Whoever made the claim that words could ease the pain/ Never watched your tears fill up an ocean/ Never saw your face, the moment you found out/ That you'd have to live without, until heaven.........
To the parents of Mikaela Lynch:


In the months after my stepson's passing  I stayed away from social media. Newtown did me in. I couldn't take it. I left the internet to itself while I tried desperately to sort out my feelings.  

Madeline and Natalie


But I have other children. I had to still live my life. Life did insist on swirling around me. Our impending appointments to get both my girls diagnosed with Autism woke me up out of my funk. I had so many questions even after a year or two reading everything I could on the subject. 

Natalie and Madeline


Facebook put me in touch with so many people going through the same situation as I. As well as people who were further along down the line. 

Is there somethin' I can do other than being here for you to ease the pain/ If I can keep you from fallin', fallin' down'/ I'm sorry to sound selfish but I feel so helpless/ Is it okay if I stay here with you and cry for awhile 

Not long after the diagnosis in April, my 4 year old ran away from me. It wasn't the first time but this time she got much farther in a shorter period of time. It scared me to my core when I found her down the street in a field. 

It terrified me. 

My wee little wanderer. 


I started "liking" every page I could about wandering. 

A little time went by and then little Mikaela showed up on my feed. 

I cannot describe to you the impact your little girl made on me. It's like I saw my Natalie. 



This is how I'll always see her. 


Maybe it was the angle of her glance. Maybe it was the twinkle in her eyes or the sunny, full grin smile. As I read the details of the case it was as if someone walked over my grave. Natalie hates to wear clothes & diaper when she is hot. She's a nonverbal child with Autism. She loves to wander. Her curiosity is boundless. She's extremely attracted to water. 

Mischievous. 


I didn't share this but with one person that last year Natalie almost drowned. We were at a park by a lake. Natalie took off running and went into the lake. Even though I was seconds behind her she was caught in the current and went under. It flipped her over so I could see strait into her eyes. She was reaching out to me to save her. I ALMOST DIDN'T. This was with a life guard right there. He never moved. Both of us soaking wet..we cried clinging to each other. 

This experience has never deterred her from water. 


Over and over and over in my mind I heard, "THIS IS NATALIE."  

I shared the story with my friends as well as my fan page. Then I wrote about it

A short time after that I heard amateur journalist make accusations that enraged me. It enraged my fellow friends who are parents of children with Autism. 



No one really knows until it happens to them. No one really know the reality of raising children with this condition. While each child is unique...the "eloping" is a common characteristic. 

Over and over and over in my mind I heard, "THIS IS ME."

I'm you. I'm the parent of a child prone to wandering. I live near water not 200 feet from my house. 



More and more bloggers and parents took action against the speculative claims. We wanted to shield you during this time. I remained glued to the computer. I prayed so hard I thought my brain would explode from it. 

Whoever made the claim that words could ease the pain/ Never watched you fall apart, never put you back together/ When you were broken down, into a million pieces/ Scattered on the ground 

And the announcement came. She had been found. But not as anyone..most of all you..had hoped. 

Independence!!!!


It was like time stood still. I just stared at the screen and sobbed. I know it may seem silly that I felt such anguish for people I never met. I realize I must sound ridiculous. But it's true. 



When my husband came home he saw my face and knew it. He said, "They found her in the water?" It was a statement not a question. My husband is in law enforcement. He knows how many of these stories end. That night we tucked the girls in our bed and hugged them into the wee morning hours even though they had school the next day. 



The grief in the Autism community could be felt all over. Collectively we all wanted to take your pain away. But we knew we couldn't. Even though I haven't met any of these parents in person I knew we were all looking at each other with the same thing on our minds. 

Over and over and over we said: "THIS IS US." 




We saw our sons and daughters in Mikaela. We see ourselves in you. With our voices raised we just wanted to say that even though we have never met:

We love you. 

We support you. 

Your daughter's legacy will be life. Your daughter has woke me up from my grief stricken daze to see what I have here with me. I need to do more than just advocate for my own family..but for others in the same situation. The more awareness the more lives we save. 

Is there somethin' I can do/ What can I say, what can I do. ~Five Star Iris  Music and Lyrics by Alan Schaefer and Dexter Green

There is always something you can do. Care. Become educated about what to do to prevent wandering emergencies and what to do if the crisis happens. 

(She dressed herself)


From AWAARE.ORG's Website:


"A variety of resources are available from tracking devices to door chimes to service dogs. Close adult supervision, along with a combination of security and safety measures and tools can work to prevent a wandering emergency. Below, please find a variety of resources that may be suitable for your loved one’s safety needs.




All my bandits. 
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Tuesday, May 14, 2013

Missing Child: Mikaela Lynch




Ever since I saw Mikaela Lynch's big blue eyes cross my Facebook feed I've been shaken. Like someone walked over my grave shaken. 

This was my status 17 hours ago:


This hits way to close to home. Recently, Natalie wandered off while my back was turned outside. I found her in a field a half mile from our house. Luckily the bridge down the road was out so we haven't had traffic. Just like this little girl she is attracted to water but doesn't know how to swim. Natalie is also non verbal and removes clothing when hot. I just spent time begging God to help find this little girl.


Non-verbal..being Autistic doesn't equal dumb. Children with are often highly intelligent problem solvers. Natalie looks for when I'm distracted (even a split second) to take advantage to do what she wants to do. 
She has zero concept of personal safety. 

I horrified to tell you the number of times I have found Madeline or Natalie in the road. Once with a huge construction truck stopping just before her. 

Madeline panics. She runs when there is a big sound. It may be towards traffic. Towards water.  She'll shed any and all clothing to include her pull ups. Vigilance is kind of an understatement. 

I've lost Natalie before. 3 hours later and police involved..she came out from underneath the house naked. 


Authorities said Mikaela has the mental capacity of a 1-year-old.
She "is attracted to water" but does not know how to swim, Celli said. Her family's home backs up against water, and search-and-rescue teams were scouring nearby waterways by air and on the ground.
"She can doggy-paddle, but apparently her thought process does not allow her to close her mouth," Celli said.
"We are still hoping for the best," he said. "We want to use every resource we have available to us to hopefully bring this to a positive outcome."
He added, however, that "as time ticks by, the likelihood of that narrows for us."
Mikaela had taken off her clothes - something she frequently did when she was hot - and the diaper she typically wore was found near her home.
Mikaela is 4 feet tall, weighs 70 pounds, and has blue eyes and brown hair. She is unable to speak, according to police.



Please God..please help them find this little girl. 


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