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.
HEALING BRODY – PART 5
To refresh your memory, we had recently returned from a house hunting visit down south. During our trip, Brody had done something very strange… he began jutting his arms out in front of him like he was being electrocuted. This was the moment I knew I could no longer ignore my mother’s instinct which was shouting at me that something was wrong. Upon our arrival at home, I called Brody’s early intervention therapist to tell her about the arm jutting incident. Did she think autism was a possibility? Her response, “I don’t think so. It’s just too early to tell. He doesn’t display the characteristics of a “typical autistic.” Give him more speech therapy and he will progress. Remember, he is a boy and typically they talk later than girls.”
I wanted to believe her, but I was still unsettled. So, I made another useless appointment with the pediatrician. The doctor reviewed Brody’s chart and we discussed his health history. She felt strongly that his frequent ear infections had “probably” contributed to his speech delay. Since he recently had tubes put in and his tonsils and adenoids removed, she wanted to give him time to catch up. There was no need, at this point, to be an alarmist she told me.
Once again, I brought up Brody’s stomach issues. “Well, what about his daily bouts of foul-smelling yellow diarrhea? The acid burns on his bottom? Could this be indicative of anything? It seems to be lasting an awfully long time.”
She chuckled, “No, no, no. It’s probably toddler’s diarrhea. I see this all the time. He will grow out of it.”
I then demonstrated the weird arm movements Tom and I had witnessed a few days earlier. She asked if we had seen Brody do it again. “No,” I replied. She had no explanation for the behavior and asked if I had any other concerns. I had the feeling she was thought I was looking for things to be wrong with Brody.
“Could his language delay be a result of being knocked unconscious?” I asked. I re-told her the story of what happened to Brody six months earlier.
It was around 6:00 pm and Brody was dressed in his pajamas playing in our family room. He came running over to me to give me a hug and tripped. In slow motion, I could see the events unraveling in front of me. There was nothing I could do to stop him. I was utterly helpless. Brody fell head first into the corner of a table with a tv on top of it. He fell backwards and his body became limp. I was quiet, waiting for him to get up and cry. But he didn’t. Brody just lay there with a large dent in his forehead, his eyes closed. I interrupted the eerie silence with my scream.
I shook him hoping to spark life back into him. My husband grabbed him and I ran to the phone to call 911. I pleaded with them to get there as fast as possible. I have never been so frightened in my life. We could not get him to respond. I was hysterical. The EMTs arrived and made the decision to have the Life Flight helicopter land in our front yard and airlift him to Johns Hopkins.
Brody was now coming to, but the EMTs did not want to waste valuable time taking him by ambulance. I remember getting in the helicopter and seeing the faces of my neighbors as the EMTs carried Brody out on the stretcher. They did not want to meet my eyes.
We stayed the night at the hospital watching Thomas the Tank Engine videos and were released early the next morning. Brody had been diagnosed with a mild concussion. The doctor was not overly concerned about future ramifications and did not recommend a follow-up plan. “Kids are pretty resilient,” he assured me.
Brody’s pediatrician listened to me re-telling the story and responded by saying it was highly unlikely his concussion contributed to his lack of language. Her recommendation was to continue using early intervention services. And that was that.
I was noticing a pattern in my life. Most of the doctors and therapists I came in contact with did not put much stock into my concerns about Brody. They were very dismissive and at times, defensive if I questioned them. Why was that?
Is it because modern medicine has become too focused on a “one size fits all approach?” Why is the majority of the medical establishment not willing to dig deeper and look past surface symptoms? It is imperative for health professionals to listen to the thousands of parents pleading for doctors to hear them and not shrug off their concerns. Is this too much to ask?
If no one was willing to dig deeper into my concerns I would have to take matters into my own hands. My new mission was to find someone who would listen and finally, help me.
To be continued.
HEALING BRODY – PART 4
It had been a long day. Tom and I were on a time crunch. We had been relocated by his company and had 3 days to find a new home. After 8 hours, looking at house after house, we called it a day.
On our way back to the hotel we decided to stop at a restaurant for a quick bite to eat. We were all pretty beat and after eating junk all day, I figured we deserved a real meal. Poor Brody had been stuffed with Cheerios and pretzels throughout the day and it was time to get some veggies into his stomach. As Tom and I gazed over our menus, something odd caught my eye. Brody’s arms were jutting straight out in front of him. I reached over and gently pushed his arms back down. A little knot started forming in my stomach.
Seconds later, Brody’s arms jutted out again. He couldn’t stop. It looked like he was being electrocuted. He had lost control over his limbs. I looked around the restaurant, not sure what to do, what to think. Was anyone looking at us? I tugged on Tom’s sleeve. Tom looked at Brody and then back at me. “What’s he doing?” Tom remarked. I was as perplexed as Tom. Whatever was going on, I knew it was not good.
I held my emotions in check until back in the privacy of our hotel room. Then, the water works were turned on full blast. I couldn’t catch my breath. All my fears I had tucked away were released. Tom looked at me like a deer in headlights.
The restaurant incident was my first acknowledged “oh, oh” moment; the moment I instinctively knew something was different about Brody and “oblivious bliss” was no longer an option. There was something more going on here. I checked my book of excuses and realized I was all out.
So what was going on? What was behind Brody’s odd arm movements, his lack of speech, covering his ears and not turning towards you or acknowledging you when you called his name?
I thought back to a conversation I had with a friend a month before. She was the first person who ever mentioned the word autism to me. My response to her was always, “Oh no, I don’t think so. He doesn’t do what autistic people do (like I really knew). Plus the Early Intervention Program (Brody was enrolled in) would surely have picked up on it. Don’t worry… he’s just a late talker.” I had an excuse for every concern she had.
I looked at my reflection in the bathroom mirror. It was time to face the music.
Part 5 to come.
Healing Brody Parts 1-3
HEALING BRODY – PART 1
Over the years, many questions have haunted me. How did Brody become a part of the statistics… the 1:88? Was it something I could have controlled? Because nobody knows the cause(s) of autism, parents are left to ponder a list of possible culprits.
- I never had cerebral vasculitis (associated with autoimmune disease)
- Tom (my husband) never had cancer and received chemotherapy and radiation the entire time I was pregnant
- Months before Brody’s conception, Tom and I never received the vaccination for Lyme disease that was subsequently pulled off the market for safety concerns
- We didn’t live in a state notorious for its high rate of autism
- I had the benefit of knowing we were living in a house contaminated with black mold
What if Brody…
- Didn’t have fetal distress, causing him to be delivered via c-section 3 weeks early
- Wasn’t born with wet lungs and treated with antibiotics in the NICU, preventing him from nursing on the first day
- Didn’t have jaundice for the first 2 weeks of his life
- Didn’t have constant bouts of thrush
- Didn’t have a documented adverse reaction to the DTP vaccine at 2 months of age
- Didn’t get a strep infection when he was 3 months old
- Didn’t require 3 different surgeries (hypospadias repair, tubes put in twice) under anesthesia
- Didn’t knock himself unconscious at a year and a half old
- I listened sooner to the clues his body was giving
- I listened to my “mom intuition” instead of the pediatricians who told me everything was fine
- I acted sooner
Did my son ever have a fighting chance?
The nagging what ifs are my constant companions because… I will never know if it was one thing, two things or all the above, that played a role or contributed to Brody’s autism. I will probably never know what the tipping point was. Or… if and when he regressed. But, I do have my suspicions.
I also have regrets. One of them, is of time lost. Why didn’t I act upon “the autism” sooner. Was I blind or a visitor in the land of denial?
Did I miss the subtle clues because he was such a peaceful baby (the envy of all my mom friends)? The baby I could take anywhere, anytime and he would just go with the flow. I really was the luckiest mom in the world (and still am). But, was it because he was so easy, I possibly missed subtle hints of regression?
I realize now, I have to look at the past for clues to heal the present.
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.
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.
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/