A Ventography!

Just two moms letting off some steam


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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, https://ventography.wordpress.com/category/autism-parenting-2/

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LEAH’S SPA VACATION

 

We dropped off Brody and Annie at school, just like any other day. Leah was sitting in her car waiting for me because I was five minutes late, as usual. She rolled down her window and offered to drive us to our work out place (i.e., one of our houses). I declined and said I would drive instead, which turned out to be a really good thing.

Leah walked over to my car, got in, and said very calmly, “I don’t mean to alarm you, but I think I am having a heart attack.”

I was about to scold her for making a horrible joke when I noticed her coloring was off. She looked gray. Then I saw that she was having trouble taking a deep breath. I said, “Well – do you want to go to your doctor?” Leah said, “No – what if it’s nothing? I’ll be embarrassed.” We started driving and Leah realized she was feeling worse (dizzy and her head was killing her) so she said, “Maybe we should go to the Urgent Care Clinic that is close by.”

I did an immediate u-turn and headed for the clinic. Once we were there, we were glad it wasn’t crowded and we signed in and took out seats in the waiting room. Leah leaned her head back on the wall and said, “I really don’t feel good.” Then, pointing to her chest, she asked me, “Can you see this?” I thought to myself, “Ah – ya… I can see that.” Her shirt was vibrating because her heart was pounding so hard. I was freaked out, but was trying to remain calm for Leah’s sake. I sprung out of my chair to talk with the receptionist. I said, “I don’t mean to cut in front of anyone, but my friend is having a heart attack. Can you please look at her… now?”

Two glazed over eyes stared back at me. The lady said, “We don’t handle heart attacks here. You’re going to have to drive her to the ER.” I saw the doctor sitting behind her doing some paperwork so I said, “Hey – you’re the doctor, right?” He said yes. So I asked him to come out and at least listen to her heart. Without even getting out of his chair, he gave me the same nonchalant answer that they cannot handle heart attacks at their facility. They didn’t even offer to call an ambulance.

I yelled to Leah, “Come on – let’s go.” And then I said to the two rude people, “Can you at least tell me the closest hospital?” We piled back in the car for the longest 20 minute ride of our lives. By this time, Leah was super hot and needed air. I cranked up my ac fan as high as it would go, but it wasn’t enough air for Leah. She put down the windows. She couldn’t talk to me anymore. I was terrified that she would stop breathing in my car and I don’t know CPR. I was envisioning how I would make the call to Tom (her husband) to explain how his wife died in my car.

Once we finally got to the hospital, they hooked Leah up to an EKG. Leah asked them if they were moving the gurney and they said no. It turns out, her heart was pounding so hard that it was shaking the gurney! Her heart rate was 170 (normal heart rate is between 60 -100). They escorted us back to a room in the ER. That’s where the fun began.

After several tests, they let Leah know that she has SVT (Super Ventricular Tachycardia) and she would need to be admitted for a few days for additional testing. Leah’s first reaction was, “Oooh – I get a mini vacation. No cooking, no cleaning, no supplements, no being woken up at night…” Then, she even said to me, “Hey – I bet I’ll even lose weight!”

But reality hit – FAST. During Leah’s two-day stay at the spa (AKA the hospital), they tried to force morphine on her even though she wasn’t in pain. She made me remind the nurse to change her IV bag because it had run out and was sucking air (Leah didn’t want death by air bubble on her tombstone). Leah’s sleep was interrupted 100 times a night so that they could check her vitals. She was given the worst food known to man. This was not very spa like after all!

Leah was asked continually about her medical history. However, it was never considered when they tried to prescribe her medication to regulate her heart. If Leah had not asked to read about the potential side effects for herself, she could have died from the medication they wanted to give her. The medication insert clearly stated it is contraindicated for people with low blood pressure and liver issues, which Leah told them over and over again she has! Needless to say, Leah refused the medication. Death averted.

Because Leah would not take the medication, the hospital staff immediately started pushing surgery. In the end, all Leah agreed to a was a Magnesium IV drip. She is still reading about the pros and cons of the ablation surgery the doctors would like her to do.

What struck us was… Leah’s biggest stress while she was in the hospital was not whether she was going to live or die. It was who would pick up Brody at 1:00pm, who would cook Brody’s rice properly, how would Tom ever remember to give Brody’s supplements at the right time and in the right dosage?  Her mind could not rest. She is a Class A Control Freak. She was worried her daily plan would or could not be followed and that Brody would regress. Then, all her hard work would be “out the window.” Leah was utterly unprepared for someone else to step into her shoes.

Leah was told by the doctors in the hospital that she has to do a better job of controlling her stress. But the reality is…the worries of autism equal stress. Unless Leah can cut autism out of her life, her stress is not going away.


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AUTISM PARENTING – CHAOS AT 50 MPH

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 https://ventography.wordpress.com/2012/03/21/autism-parenting-a-lonely-light-in-the-night/


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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: https://ventography.wordpress.com/category/autism-parenting-2/


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FLYING WITH AUTISM – TRAPPED AT 50,000 FEET

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.

Humanity Redeemed:

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: https://ventography.wordpress.com/category/autism-parenting-2/


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THE SECRET WORLD OF AUTISM PARENTING

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.


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TWO MOMS ON A CRUSADE FOR ANSWERS TO THE QUESTIONS THAT HAUNT US

What are the questions that keep us up at night?  Here they are:

  • Why did this happen to our children? Was it something we did or didn’t do? Was it something in their environment that we could have controlled?
  • How can we help our children recover or at least live life to their fullest potential?
  • What will happen to this generation of sick children as they grow into adults?
  • How do we prevent this from happening to future generations… to our grandchildren?
  • How can we ever die? Who will take care of our children?
  • Why does it seem that so few people and organizations are interested in getting to the root cause of the autism epidemic? Why doesn’t it get the same amount of tv time and funding as other childhood diseases that are not nearly as prolific?
  • What are these “canaries in the coal mine” trying to tell us as a society and why is nobody listening?

These are the questions we’re often too afraid to verbalize because it takes us to a place of such fear and anxiety that it’s hard to continue on with daily life and be the moms we are called to be. But we’re going to discuss them because we need your help. If we (parents who are struggling to find answers for their children) banded together to demand answers and share our knowledge, we know we could move mountains.

Please join our crusade for answers. Forward this post to your friends and ask them to join with us too.

For more on our crusade for answers, please visit our facebook page and perhaps give us a like: https://www.facebook.com/healthinducedautism