A Ventography!

Just two moms letting off some steam


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INTERACTIVE TEXTBOOKS TO IMPROVE READING COMPREHENSION

 

We love the apps from the Mobile Education Store. We have bought lots of their apps in the past for Annie and Brody. We were so excited to read about their newest venture – interactive textbooks. We can’t wait to be able to download them. Check out this video to see more about the future of textbooks.

Crack the Books™ is a series of interactive books. These revolutionary books are designed to improve reading comprehension in all students, from those with special needs to those with academic gifts. They are the first that can be adjusted for reading level without sacrificing curriculum content. Students can experience all the content presented to their classmates, while reading at a level that is appropriate to their ability. Targeting 3rd – 6th grade science and social studies concepts, our iBooks allow for reading level adjustment from 1st to 8th grade within the same book, making it possible for all students in a classroom to access the same curriculum content regardless of their reading ability.

Crack the Books is part of Mobile Education Store’s award winning suite of educational apps. MES has won over 50 app awards and has been named educational developer of the year in both 2011 and 2012.

For more information:

Newsletter signup: http://mobile-educationstore.com/signup
website: www.mobile-educationstore.com
LinkedIn: http://www.linkedin.com/pub/kyle-tomson/3/b7/514
Facebook: www.facebook.com/MobileEducationStore

 


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PREVENTING AUTISM – WHAT THE PARENTS SAY

preventing autism video

This is a video we found on Recovering Kids, a website owned by Regarding Caroline.

Recovering Kids asked the members of their group what can be done to stop the increasing numbers of children being diagnosed with autism. Their answers give valuable insight to anyone who is terrified of the epidemic that is changing the face of a generation of children…. currently one in every 50 children is affected by autism.

We wish we would have had this advice before our children were born.

Do you have advice to add?

We’d love to hear from you – parents who are living with autism every day. We respect your opinions and have learned more from you than from our pediatricians. Please write to us and let us know your best advice. We would like to publish your responses to help other parents who are just beginning their journey with autism.


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KITE IN THE WIND

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Changes are happening in my house. Roles are shifting and I am unsure of my place or the direction the changes will take me.

Life continues to bustle around me, but I want it to stop…just for a brief moment.

I have grown too comfortable in the individual roles each family member has taken and I am not ready for  a shake up in the family dynamics.

I need a little extra time to take a breath, make peace with the fact my children are growing up, exerting their individuality and my role of mom is being transformed.

I feel like a kite in the wind that has been pulled from the security of an owners hand. I am now flying uncontrolled through the air, destination unknown. I fear the unknown and I am just not ready to face the winds of change.

My oldest son is about to leave the nest and start a new life as a college freshman. My middle son is close behind, embracing his sports and high school life. I am frightened that my children will no longer be under my roof, and somewhat under my control.

I am now closer to 50 than 40. The reflection I see in the mirror does not always please me…wrinkles, sagging skin and grey hairs.

And then there is Brody. Brody, my naughty little caterpillar emerging from his cocoon… knocking on the door of puberty.

So what exactly is my issue? What is at the root of my angst?

Is it the loss of control?

Is it that my children are happily cutting their umbilical cords, becoming independent?

Is it the loss of my youth?

To be honest I think it boils down to … autism and puberty. It scares me.

What is in store  for me, for Brody?

Puberty with the first two boys came and went. Not much fan fare or hoopla. There were no worries of privacy or inappropriateness. Girl crushes, the first broken heart, peer pressure were just part of the process. We rolled with the punches.

Will “the process” be the same for Brody? Will he have the same experiences? Or will he be unfairly  judged, ridiculed, and made fun of as he attempts to find his way through the ugly jungle of adolescence?

We all know what a difficult time it can be muddling through the new rules adolescence brings…especially if you are so-called “different.”

I can’t keep him confined in my tight grasp forever. But can I let go?

It is time to embrace the winds of change. Face my fears.

I can not change change or control what is happening. I am only capable of doing what I can.

I give myself  permission to allow the wind to take me to new places…unknown. To dance among the clouds.

I am a kite in the wind.


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WE ARE… ADAM LANZA’S MOTHER

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When we heard about the tragedy in Connecticut, we like most people in America, were deeply shaken. But for us, the feelings of sadness were more than being parents and relating to the victims’ families. It was more than sadness over the loss of innocence of the survivors. We felt physically sick. We had an uneasy feeling.

When Leah heard that the school principal and school psychologist were shot, she immediately said that she thought it was the parent of a child with special needs who was fed up with “the system.”

We had a sixth sense that some how special needs was involved. When we heard the word autism connected to the shooter, it knocked the air right out of us. If you think about it, there but for the grace of God, any one of us could be Adam Lanza’s parent.

But, we do not want this incident to become the definition of autism. We do not want people to assume all people with autism are violent and someone to be feared. Our children are isolated enough as it is. Will children on the autism spectrum be even more discriminated against because of the actions of Adam Lanza?

When we saw this article, we were so impressed by Liza Long’s courage. She discusses the fears that many of us keep quiet and shove way down into the depths of our hearts.

As a society, we are failing children who have special needs. They are not being educated properly, they are bullied unmercifully, they are often abused by people in authority (the very people they are supposed to be able to trust), they are often times being improperly or over medicated, there are few jobs available for them after graduation, and the older they get people become afraid of them.

In addition, many times it is a single parent doing their best to raise a child with special needs. But even when two parents are involved, they often feel abandoned…left to fend for themselves. They turn to their family, friends, neighbors, and churches for help and nobody knows what to do. So the children continue to fall through the cracks.

We fear there will be more Adam Lanzas if something is not done.

But what should be done?

That is the million dollar question. We asked ourselves, if we had all the money in the world, what would we do to help? Many people are focusing on gun control, but we don’t think that is getting to the root of the problem. The root comes from the break down of the family unit and that we no longer have the “it takes a village to raise a child” mentality in America. Many children are not getting the love and guidance they need at home nor in schools.

We don’t have all the answers, but we know one thing we would do is revamp the school systems. Perhaps, if teachers were given proper training and support and if students were taught from an early age to include children who are different from them, we could make a positive impact.

So, fellow bloggers in the autism community, what do you think? If you had all the money in the world to devote toward this problem, what would you do? Do you think this will lead to increased discrimination against children on the autism spectrum?

Liza Long said in her article, “This problem is too big for me to handle on my own.” She’s right, she can’t handle this on her own. Nobody could. Currently there are no good options. We’ve said it before and we’ll say it again… the autism community is screaming out for help. We need to support each other (instead of tearing each other down for our varying views) and we need society to stop trying to sweep us under the rug.

1:88 is not going away.


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MOLLY AND LEAH… MOST UNLIKELY SCHOOL “PRINCIPALS”

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After taking the summer off, we’re trying to get back into our blogging groove. We had a very eventful summer that distracted us from our weekly ventings.

Our local ABA therapist was approached by a private school to start a program for children with special needs. She made the mistake of mentioning this opportunity to us and now we’ve roped her into something that has taken on a life of its own.

There are lots of programs in our community for children on the spectrum. But we realized what is lacking is a program that is uniquely tailored to each child. There are so many children falling through the cracks right now. Some are falling behind because they are in a self-contained classroom where the teacher has to teach to the lowest academic level in the room. Others are falling behind because they are in a regular classroom and the work moves at a pace where the children just can’t keep up.

Children are being moved along with major holes and skill deficits that are only going to hold them back more and more as time goes on.

Our other frustration was that our children are above grade level in some areas and yet behind in others. We want them to keep moving forward in their strength areas while having a chance to catch up in the areas where they struggle. However, teachers who have 20+ students are simply not able to accommodate this need.

Our third major frustration was that the school systems don’t seem to believe in our children’s potential the way we do. We have not written off our children. We want them to have the same learning and career opportunities as everyone else.

What were we to do? Start our own school! So that’s what we did this summer. It’s a pilot program, and we hope and pray it will be successful.

Here are the ideals of our program, straight from our brochure:

We recognize that every child is unique and that an academic program must be tailored for each individual child. We help students achieve their full potential by offering a smaller, hands-on, interactive, non-traditional learning environment.

There are no reduced expectations for our students. We teach the same material as traditional schools, but we teach it in a way that matches our students’ individual learning styles so that they are met with academic success instead of frustration and feelings of failure.

Our program equips students with the confidence and study/organizational skills to successfully transition to a traditional school, if desired.

Our pilot program is for elementary age students. However, we hope to start middle and high school programs soon.

So we’d like to know… have any of you out there taken on this same challenge? We’d like to learn from you. What were the biggest challenges? What were your lessons learned? What do you wish you would have known before starting this adventure? Any advice you can offer us would be greatly appreciated.

We are learning as we go along. Truth be told, we’re winging it. Sometimes we fear we’re in over our heads. We just have to have faith that our love for our children and our sheer tenacity will see us through.  Thanks in advance for your help!


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HELP! MY CHILD SWALLOWED A BATTERY.

FROM THE SERIES: AUTISM PARENTING

This is the true story of a day in the life of our friend, Kathleen.

To the outside world, Kathleen’s life looks perfect. She has a stunning home on the water. She has all the material things one could need. She has a beautiful family. However, once you step into Kathleen’s world, you realize appearances are deceiving. There is nothing relaxing about her environment. Upon walking through her door, you immediately feel a frenetic energy. Your adrenaline starts rising.

To give you a glimpse of what we’re talking about, we wanted to tell you about a typical day in her life.

Kathleen has three sons. She asked her oldest son and his friends to watch Charlie (her son with autism) so that she could get some things done. She was in her kitchen (downstairs) making supplements and trying to do the dishes. Next thing she knew, Charlie showed up in the kitchen. She yelled for her oldest son to ask why he was not watching Charlie. She got no reply.

Not knowing how long Charlie had been left alone, she worried perhaps he got into something he shouldn’t. Charlie is 6 years old, however, he functions at the level of an 18 month old. He still puts EVERYTHING in his mouth. Kathleen has to lock up any toys with small pieces and tape her remote controls, etc. so that Charlie can’t put any small pieces in his mouth and choke. She always has to be “on.” She lives 24/7 in a state of high alert.

When she got to the playroom, Kathleen saw duct tape all over the floor. Charlie had peeled it off the remote control. She then noticed a lone battery sitting on the ground. Heart heart sank and she panicked. She screamed for the other children to help her look for the missing battery. She then looked over at Charlie, and by this time he was curled up, in a fetal position on the floor, moaning in pain. She knew then that she could stop looking for the other battery. Charlie had swallowed it.

She thought about calling 911, but was a afraid. Just the day before, she had to call 911 because Charlie stopped breathing from a major seizure. He has seizures approximately 3 times a week. Kathleen was worried Child Protective Services would take Charlie away from her because of too many 911 calls. So she called her pediatrician instead. He told her she would have to get Charlie to the ER right away.

But she couldn’t just load Charlie in the car and go because she had a house full of neighborhood kids. She had to track down the parents of each child and make sure they would be picked up. Luckily, a father in the neighborhood offered to stay with her 4-year-old and all the other boys until the other parents arrived.

At long last, she was able to start her trip to the ER. About five minutes into her journey, she looked at Charlie in her rear view mirror. He was slumped over in his car seat. He looked gray and she didn’t think he was breathing. She panicked. She looked to her left and right and noticed an Urgent Care. She peeled into the parking lot, left her car running, went in the Urgent Care and screamed, “My son has autism. He swallowed a battery and has stopped breathing. You have to help me!”

They said, “We don’t handle emergencies like that.” She screamed at them, “You must know CPR. Help me or my son will die.” They reluctantly came out to the car and did CPR. Charlie started breathing again and his color perked right up. They sent her on her way to the ER.

Strangely enough, Charlie seemed like he was no longer in distress and was back to normal. He was doing his typical hand movements and verbal stimming in the back seat. She was grateful for his noises because she knew this meant he was still breathing.

When she finally got to the ER, she carried Charlie in, along with about 4 different bags. She had the bags pre-packed, standing by, ready to go at a moment’s notice since they have so many emergencies in their household. She has one bag with an epi-pen and medications. Another with Charlie’s supplements, written dosage amounts, and snacks. A third bag with a change of clothes, since Charlie has constant diarrhea. And a fourth bag with toys and books to keep Charlie occupied.

She announced to the receptionist who she was and expected to be ushered back to the ER immediately because her pediatrician had called ahead and had forwarded Charlie’s records/medical history. Unbelievably, she was instead told she needed to sign in. She said to the lady, “You’re kidding me, right?” She pointed out that she didn’t have a free hand and asked the lady to sign her name for her. The lady refused. So she sat herself right down on the lady’s desk, flung her bags everywhere, and scribbled her name. Then, the doctor came out from the back. He was clearly expecting her and was much kinder.

They did an X-ray to see where the battery was and remarkably, the battery had already traveled to bottom of Charlie’s intestines. In this particular case, his unusually speedy digestion was a positive because it meant that the battery did not have time to erode from his stomach acid. However, it showed Kathleen how messed up his system is because one should not be able to process food (or anything else) in 45 minutes. This is one of the reasons Charlie is so sickly. He doesn’t absorb any nutrients from his food, it just passes right through his body and gets eliminated.

The ER doctor told Kathleen that if Charlie didn’t pass the battery in 2 days, he’d need surgery. Luckily, he passed it the next morning.

You might be thinking this is a freak occurrence in Kathleen’s life. But it’s not. She faces life or death struggles, just like this one, on a daily basis. Kathleen is another face of autism parenting. She is an amazing mom and we are proud of her strength and fortitude.

For more posts from our Autism Parenting Series, http://ventography.wordpress.com/category/autism-parenting-2/


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HEY, HUFFINGTON POST – YOU MISSED THE BOAT!

Huffington Post Parents is looking at autism through the eyes of parents this week. Each day, they are running an essay about the stages of parenting a child with autism: the moment of diagnosis, the school years, teens, and entry into the adult world. We were excited to read this because, we too, recently kicked off a series about Autism Parenting in honor of Autism Awareness Month. We wanted to see what angle the Huffington Post was taking and the views of the writers they selected. We were optimistic that they would represent all the varying opinions of the autism community.

The first post was written by Hannah Brown and it was entitled, “Ten Things To Do After An Autism Diagnosis.” To be honest, we were somewhat surprised and disappointed after reading this initial post. We feel this was an odd choice by The Huffington Post. The author’s post was well written and has its place somewhere, but we don’t feel it was a good choice for introducing their entire series about autism parenting.  Let us tell you why.

One, we feel The Huffington Post should have taken the time to introduce “the different faces of autism.” How can one post represent the autism community’s reaction to receiving the initial autism diagnosis? A parent’s reaction is going to be vastly different depending on the type of autism their child has… Classic Autism, PDD-NOS, Rett’s Syndrome, Asperger’s, and Childhood Disintegrative Disorder. We feel The Huffington Post should have taken the time to have a parent who represents each of these 5 types of autism talk about their individual reactions to hearing an autism diagnosis. Instead, The Huffington Post chose a top 10 list to represent us. It felt flippant, like they picked the post out of a hat and thought “this is good enough.” The Huffington Post’s selection felt like a “rush job” for such a defining moment.

Two, the post seemed to be written in a “tongue in cheek” style which doesn’t seem appropriate for the life-changing, ground shaking moment a parent receives an autism diagnosis. We feel The Huffington Post should have selected a post that discusses the raw emotions a parent feels when they hear the word “autism” in connection to their child. This post seemed to jump ahead to a “to do” list instead of respecting the emotions brought forth by receiving an autism diagnosis.

Is it okay for us parents to have a moment to be sad as all our dreams are being redefined? Is it okay for us to be scared of the future for our children? Can we have a moment to digest and make sense of what we’ve just been handed? Are we expected to jump immediately into action mode? We don’t feel that most parents went right into checking off a to-do list upon receiving a diagnosis. That comes later. We know the author was just trying to share her “lessons learned,” which is good information, but just not what you want to hear when you first hear the word “autism.”

This post, once again, neglects to discuss and educate the outside world on how a parent feels when they receive the diagnosis. And as we’ve pointed out, when the public doesn’t “feel our pain” they do not feel compelled to help… to fund autism research, to help and support family or friends who have a child with autism, to keep their judgments and criticisms of autism parents to themselves. This was a huge missed opportunity by The Huffington Post to help us – the autism community.

The third reason we were surprised and disappointed by this post was because it did not discuss any sort of action plan to help the child. It failed to address how to handle potential health issues, how to find the right types of therapy, or where to get reputable information/advice. It was all about what we, as parents, can do for ourselves. We do feel it’s important to look out for and take care of ourselves (and the author offers some good tips), but we don’t feel that’s representative of most parent’s first reaction to a diagnosis. That comes later.

Because of these three reasons, we believe the author was met with very harsh criticisms of her post. Our hearts ached for her as we read the critiques. She’s another autism mom, just like us, who has dealt with the challenges of autism for many years. Putting ourselves in her place, we would have been extremely hurt by many of the comments. She’s had 12 years to reflect on what she wishes she would have done upon receiving the diagnosis and she was just trying to share it and perhaps, add a little humor to a difficult situation. We wish she wouldn’t have had to bear the brunt of such bitterness. The Huffington Post should have received the criticism for selecting the wrong post at the wrong time. Not her. Her post would have been quite appropriate later in their series.

To read the post and criticism for yourself, go to http://www.huffingtonpost.com/hannah-brown/autism-diagnosis_b_1390100.html?icid=maing-grid7%7Cmain5%7Cdl11%7Csec3_lnk1%26pLid%3D148528.

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