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.
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.
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!
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/
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.
FROM THE SERIES: AUTISM PARENTING
We recently attended a local mom’s group where we were struck by how different our world is from the world of neurotypical parents. We heard a group of women talking about how their young daughters never stop talking when they’re in the car. They were annoyed that their daughters bombarded them with countless questions and comments. The moms were mourning the days when they could use their car time to speak to their friends on the phone without interruption.
We gave each other “the look” but dutifully waited until we got in the car to let loose.
Hearing those ladies say they wished their daughters would “shut up” felt like a knife in our hearts. We remember when we would have done anything to hear just one word out of our children’s mouths. We wondered if we would ever know the sound of their voices. Those moms had no idea what they were taking for granted – what a luxury it is to be able to communicate with your child through words.
Sarcastically, we said to each other, “If having their phone conversations interrupted was the worst part of their car ride, we’ve got a few other doozies to share.”
We wondered if they’ve ever had a glass bowl, thrown by their child during a tantrum, nail them in the head while they were driving. Or if they’ve ever driven for miles at a time, curled up like a “little old lady” toward the steering wheel, trying to avoid being hit by “fists of fury.”
We wondered if they would be able to relate to Leah’s recent trip to the airport. Brody spotted a fair and became fixated about going on the rides. Leah knew he was building up to a major meltdown, so she decided to use a tactic taught to her by Brody’s ABA therapists. For some reason, when Brody is worked up, he can’t process information verbally anymore. By writing what she has to say on a piece of paper, Leah can help Brody visually take it in and he can process it on his own time. This method is very calming for Brody when he is fixated and anxious.
So, Leah scrambled for a scrap piece of paper and pen (while she was driving) in order to write a note to her son. She wrote, “It is raining. We cannot go to the fair.” Then, she flashed this message at Brody in the back seat. After he read it a few times, he calmed right down. But Leah was armed with her pen and paper for the rest of the ride. Many notes were required for a smooth, tantrum-free ride home.
We wondered if the ladies would be disturbed by what happened to a friend of ours. Our friend was driving with her children and was doling out Gummy Bears, one at a time, to keep them calm. After a few minutes, her daughter (who has autism) said, “Here you go.” The little girl proceeded to hand our friend what she thought was a Gummy Bear. The mom went to put the “supposed” Gummy Bear in her mouth, but something made her stop at the last second. It was not a Gummy Bear… it was a little pellet of poop! Is this worthy of a complaint?
We wondered how they would cope with a situation that recently happened to another friend of ours who has a daughter with autism. Her daughter likes to “pick” in order to keep herself calm. If anything is loose or peeling away, the little girl has an uncontrollable compulsion to pick it off. It just so happened that our friend’s mini van had a tiny tear in the vinyl that lines the inside of the door. The little girl with autism “went to town,” picking away at the vinyl. The mom was oblivious to her daughter’s destruction and was happy to enjoy what she thought was a peaceful car ride home. By the time they reached their destination, the vinyl was in shreds and her daughter was chewing on the little pieces. Our friend has an amazing sense of humor and is no longer upset by the loss of material things, so she managed to laugh it off. But we wondered, would the ladies at the mom’s group do the same?
We don’t mean to sound like we’re picking on (no pun intended) the ladies from the mom’s group. It is not their fault that they can’t relate to our lives as autism parents. Before we realized our children had autism, we made the same comments and complaints. We only use their comments to illustrate the glaring differences between the worries of autism parents and the worries of parents with neurotypical children.
More realizations from the mom’s group to come… stay tuned.
For our previous mom’s group realization about sleep, go to http://ventography.wordpress.com/2012/03/21/autism-parenting-a-lonely-light-in-the-night/
FROM THE SERIES: AUTISM PARENTING
We went to a local mom’s group meeting and felt like misfits. These ladies were speaking a language we did not understand. We were all moms, but what we shared in common pretty much stopped there. Being at this meeting made us realize how different our lives are from those of neurotypical parents. On our ride home, we processed all that we had seen and heard and the emotions conjured up for us. We realized we needed to share what we thought about on our blog because so many of us can relate.
We overheard a conversation between Rebecca and Carrie. Rebecca was talking about how her 9 month old wouldn’t sleep through the night. She had to get up twice a night, give him a bottle, and soothe him back to sleep. She was exhausted she told her friend. She couldn’t think straight, her eyes were blurry and burned all the time, and she was finding it hard to keep her emotions in check.
If only Rebecca knew our friend, Cindy, who has a 16-year-old son with autism. She hasn’t had a full night of sleep for the last 16 years. When her son wakes up at night, there is no way to soothe him back to sleep.
A glass of water doesn’t help in fact, it makes him wet the bed.
Reading him a story doesn’t help, it over-stimulates him and makes his unexplained, uncontrollable night-time laughter even worse.
If she lets him watch a movie or tv, his noises get so loud that it wakes her husband and other children.
On the nights when her son has a tantrum, she can’t let him “cry it out” because he destroys his room and their house in an uncontrollable rage.
Even on the nights when her son decides to play quietly by himself, Cindy can’t ignore him because he can no longer be safely confined (like a baby, unable to walk) in a crib. The quieter he gets, the more scared Cindy becomes because then she knows her son is up to something. She worries whether he’s escaped out of his room or worse yet, out of the house.
So, for the last 16 years Cindy starts her day whenever her son chooses to get up. If he wakes up at 2:00am, that’s when Cindy makes herself a cup of coffee and sits with her son feeling all alone in the world. Cindy no longer complains about her situation. She knows it’s a strong possibility he will never outgrow his insomnia and she’s made peace with it.
Cindy knows she is the glue of her family. She has no choice but to move on with life and be a good wife and mom to her other children. On top of this, Cindy manages to be a good daughter and friend to many. Where does she find the inner strength?
Message to parents with children who sleep through the night:
If you happen to be out late and see a single, lonely light in the night, think about Cindy and all the other autism parents struggling with children who won’t sleep… and count your blessings.
We have more stories and thoughts to share with you from our day at the mom’s group. Please stay tuned…
For more information on our autism awareness series: AUTISM PARENTING, go to: http://ventography.wordpress.com/category/autism-parenting-2/
PART OF THE SERIES: AUTISM PARENTING
The Back Story:
Our friend Debbie’s son had been suffering from severe intestinal issues and the local doctors couldn’t figure out the source of the problem, let alone help alleviate her son’s constant pain. They kept telling her, “It’s just autism – there’s nothing you can do.” She heard about Dr. Arthur Krigsman from a DAN! conference and how he uses a pill cam and other tests to diagnose gastrointestinal issues associated with autism. She figured it would be worth the stress of taking an airplane to see this guy and finally get some answers.
Debbie, Bob, and their son, Finn, flew to New York to have Finn tested. He had to experience several invasive procedures over the course of two days. He was such a trooper. Debbie was amazed by how well Finn did. It was like he knew these people were going to help him feel better.
It was time for the journey home. Debbie had made arrangements to delay her flight if Finn seemed cranky or in distress. But Finn was in a great mood and they decided to stay on schedule.
They got on the airplane and this is where the story begins…
The Flight to Hell:
About half way through the flight, Finn started fidgeting and got fussy. Debbie, a veteran autism mom prepared for Armageddon, pulled out her supplies – think Toys R’ Us in a bag. She tried everything to soothe Finn. But things were going downhill fast. She started getting looks of “do something” from the flight attendants. She thought maybe a trip to the bathroom would help. But it only made things worse.
Upon returning to their seats, she turned to Bob and said, “A melt down is coming – there’s nothing I can do, we’re going to have to ride this one out.” She was out of tricks. Bob looked anxious, began sweating profusely, and squirmed in his seat right along with Finn.
Finn absolutely lost it. He blew, just like a geyser. He was screaming and crying. He was inconsolable. After about five minutes of the tantrum, Debbie heard someone yell, “GEEZ” from the back of the plane.
Debbie could contain herself no longer. The stress of the previous few days and life in general overwhelmed her in that moment. Before she knew what she was doing, she hopped up on to her seat, turned toward the back of the plane, and now she was the one yelling. She screamed, “MY SON HAS AUTISM! HE CAN’T HELP IT!”
The plane fell completely silent.
Debbie turned to look at Bob and he was white as a ghost. She thought she was going to have to call EMS for him because he was so mortified by the chain of events that had occurred.
The tantrum went on for another ten minutes and finally, Finn was able to calm himself down.
During the tantrum, Debbie felt like it was her against the world. But then, people began reaching out to her. There was a French couple in the row in front of her that offered to help in any way they could. A woman next to her shared that her best friend has a child with autism and she understood what Debbie was going through.
Then, as people were exiting the plane, Debbie noticed something profound. Many young adults (in their twenties) sought her out. They complimented her, told her she was an amazing mom, and that they hoped everything would be okay for her family.
In stark contrast, people who were older (who likely had children or even grandchildren of their own) wouldn’t even look her in the eye. Not one kind word was uttered by them.
She asked herself why were the young people so empathetic when they didn’t even yet know what it’s like to be a parent?
She figured it’s because the younger generation has been around autism their whole life. They are so much more aware. They probably all know someone who has autism. Autism has touched their lives in some way.
It gave her hope. Perhaps as her children get older, they will be surrounded by more tolerant and understanding people.
Not only did the older generation not understand, they didn’t care to understand. Debbie was baffled. How could parents be so cold? It was easier to judge her as a “bad parent” who had no control over her child than to remember times when their own children were “less than perfect.”
These people had no idea what Debbie, Bob, and Finn had been through during the days preceding the flight. They had no idea that her son lives in constant pain, without any way to verbalize what he’s feeling (except through crying or noises). They had no idea the lengths Debbie had taken to prepare for the flight so that her son wouldn’t disrupt anyone.
These people didn’t realize that melt downs are a regular event in the life of Debbie and other autism parents.The only difference, on this day, was that Debbie had no escape when the melt down began.
Usually, autism parents quickly exit the scene so that people don’t have to be bothered or upset by our children’s behavior. Often tantrums prevent us from getting our grocery shopping done, running into the postoffice to quickly drop something off, or popping into Target or Walmart.
But what was Debbie supposed to do when she was trapped 50,000 feet up in the air? Did the people on the plane want her to take Finn, open the emergency exit door, and jump?
Sadly, for people who have no understanding of autism, the answer is probably yes.
For more information on our autism awareness series: AUTISM PARENTING, go to: http://ventography.wordpress.com/category/autism-parenting-2/
INTRODUCTION TO THE SERIES: AUTISM PARENTING
We are introducing a new series of posts about what it’s like to be an autism parent. This is our way of contributing to autism awareness.
In this series, we are not going to discuss the definition of autism or potential causes. We do, however, find those issues extremely important and we have and will continue to discuss them in other series on our blog. But for this new series, our purpose is to make people more aware of what it’s like to walk in an autism parent’s shoes for a day.
We are trying to increase autism awareness by sharing our life and the lives of our closest friends who are living with autism. We want the reader to get a true glimpse into our world, our reality… the “raw” side of autism.
People can’t help or begin to truly understand autism if we don’t open ourselves up and share the struggles we all go through on a daily basis.
Autism parents are stuck in a vicious cycle. We have learned to be masters of “keeping it together”. We tell people everything is fine. We are not very good at asking for help or sharing our sorrows. We often isolate ourselves from society because we’re sick of explaining or making excuses. We know the general public can’t relate to what we’re going through and we’re too tired to educate. Instead of speaking out, we tend to internalize things.
But this is exactly what bites us, the autism community, in the butt.
This is a major reason that so little is known about autism by the general public. And because the public doesn’t really even know what autism is nor what it’s like to parent a child with autism, people are often harsh and judgmental.
We believe autism parents (ourselves included) need to do a better job of letting people in, versus living secretive lives. It is time to speak up.
Perhaps, if the public hears real life stories from autism parents in the trenches, they will become more understanding of our children and less judgmental of us as parents. People may even realize there is an autism epidemic affecting today’s youth, fund autism research, or hound the media to give autism the coverage it deserves.
One percent of the population currently has autism, and many say that number is still rising. Right now, the autism community is easily “swept under the rug” because we (autism parents) are taking care of everything… the bills, the childcare, the healthcare, the education, EVERYTHING. But what is going to happen when we die? When one percent of the population is parentless, and potentially homeless. Who will be responsible then?
Wake up world – autism is going to affect you in one way or another. Please help us now before things get out of control!
What can you do? Forward our autism parenting posts to increase autism awareness and help end the secrecy.
Copyright © 2012 [A Ventography!]. All Rights Reserved.
PART OF THE SERIES: AUTISM PARENTING
It was supposed to be a glorious Memorial Day celebration among friends. Two families who have children with autism having fun, relaxing around the pool. No judgment, no pretending, no stress. We were all in the same boat. The men were on the patio discussing men stuff. I was talking with my friend Debbie by the pool.
Debbie is the mom of triplets – two of them have autism. They were seven years old at the time.
My middle son, Nolan, came through the screen door and needed my attention. I took my eyes off Brody (my youngest son who has autism) for just a millisecond to talk with him. In that timeframe, Brody (who was then 5 years old) had somehow fallen into the deep end of the pool, without making a sound, and was lying there motionless. Next thing I know, Nolan said, “Mom – I think Brody is drowning.” I looked and saw him there, eyes open, with his arms over his head. I went into overdrive and jumped in the pool to save him, clothes and all.
I pulled him out. He coughed up water, but was alert and seemed fine. I, however, was not. I couldn’t breathe. I had come to understand why drowning is called the “silent killer.” When I say Brody didn’t make a sound, HE DID NOT MAKE A PEEP. There was no noise as he fell in the pool, he never splashed, yelled help, or made any sound trying to fight for his life. Four adults and two middle schoolers were all outside, steps away, and yet nobody realized this had happened until Nolan sounded the alarm.
My husband kept telling me everything was okay, but all I could think about was what might have happened. Brody was petrified of swimming for the next two years and that was fine with me.
Even though I was emotionally exhausted, our friends decided to stay for dinner. We thought… what else could go wrong? We had no idea what was coming next.
After dinner, it was time to round-up the kids to go home. Debbie’s husband, Bob, went to put Katie (one of the triplets with autism) in the car. We all followed out to the garage to help carry their bags, etc. Finn, their other triplet with autism, was reading a favorite book on the couch, happy as a clam. Or so we thought…
Once Katie was safely strapped her in her car seat, we came back in the house to get Finn, but he was nowhere to be found. Finn had a habit of sneaking into people’s closets to go to sleep, so we all figured he was upstairs in a closet.
We searched every closet and did not find him. We started to get a little panicked. We sent one of the older children to the garage to watch Katie while we continued the search for Finn. In that timeframe, Katie had locked us out of the car, with the engine running!
We decided to “divide and conquer”. The dads focused on talking Katie into opening the car door. And the moms began the mad search for Finn. (Nolan was assigned to watch Brody). We were completely freaked out because we had ruled out the possibility that Finn was inside the house. We worried, maybe he had drowned in the pool or the pond that was behind our house.
The dads finally talked Katie into opening the car door. Her dad took off in the car to drive the field behind our house, shining the headlights so that he could look for Finn in the pitch black and rainy night.
My husband, Tom, and my oldest son were now running up and down our street, knocking on every door, and yelling at our neighbors to help look for Finn. I got on the phone to 911 and pleaded with them to hurry – there was a little boy with nonverbal autism who was lost. At that moment, my friend Debbie let out what I can only describe as a primal scream.
Inside, I wanted to throw up. I felt responsible because this had happened at my house. I was mad that I didn’t call the whole thing off after Brody had almost drowned. Why had we tempted fate? Despite my overwhelming guilt, I knew I had to keep it together for Debbie’s sake.
911 called us back and asked if Finn was wearing pink shorts, a flowered shirt, and was holding a book. That was our Finn! We got Finn’s location from the 911 operator and Tom and Bob jumped in the car and flew to the scene where they were met by an irate couple and a police officer. Finn had run all the way up our street (about a half a mile), crossed a busy two lane road, and almost made it to a major highway when the couple, sensing something was not right, stopped him.
The couple who found Finn was angry because they felt Bob and Debbie were irresponsible parents. They should have watched Finn more closely and they felt Finn should have had his name in his clothes or worn an identification bracelet due to his communication issues.
While we appreciated these strangers for keeping Finn safe, the last thing Bob needed, at that point, was to be scolded. We knew they were lashing out because they were afraid, but they unfairly judged Debbie and Bob. They had no idea what it’s like to deal with two children with autism 24/7 and how much effort it takes to keep them safe. Sometimes, when you’re out of your element and routine, unforeseen events occur.
We were all emotionally drained and knew this was a life changing event.
We were not careless parents. We were parents who were dealing with three children who have autism, attempting to enjoy Memorial Day like everyone else. We just wanted to relax, enjoy a peaceful day, and be “normal” for once. Perhaps we were guilty of letting our guard down.
That day, we learned parents who have children with autism simply don’t have the luxury of letting their guard down… EVER.