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/
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/