Cute football player: “Hey Lisa, you hungry or what?”
Nerdy and socially clueless cheerleader: “Yeah. I am so glad my mom made caldo* for dinner.”
Cute football player: “Oh, well some of us are going to Pizza Hut. Do you want a ride?”
Nerdy and socially clueless cheerleader: “To my house? Uh, no I have a car remember?”
Cute football player: “No. Do you want a ride to Pizza Hut?”
This was how he always asked me on a date without asking me on a date. It was like the time he asked me to be his date for homecoming by shouting down our high school hallway after second period, “Hey! Are you gonna pick me up for the homecoming dance in your new car or what?”
It was the fall of 1998 and the big homecoming parade and bonfire was just wrapping up. I slipped on my black and gold wind pants over my cheerleading skirt and jumped up onto a 1985 Chevrolet Suburban. I sat there adjusting the insert of my Nike cheerleading shoes, (oh girls you know the ones…they came with multicolored inserts so that you could change the color of the Nike swoosh) and then I started to look around and smell the vehicle. Let’s just say this thing was seriously a locker room on wheels. He jumped in the driver seat and I carefully buckled up which is about the time I noticed that the floorboard was so worn out I could see the asphalt of the parking lot through small openings beneath my feet. I also noticed that he didn’t put his seat belt on and I was about to say, in a chipper mommy voice, “Buckle up for safety!” Oh I know, hopeless. Anyway, I almost said that but I didn’t because as the engine rumbled on I heard for the first time over the busted out speakers the song, “Scar Tissue” by the Red Hot Chili Peppers. This guy was so cool. Like really. I was so awkward and he was so freaking cool. I didn’t know any of the words but right then and there, because I am just so incredibly nerdy, I promised myself I would secretly buy whatever this CD was and memorize all the songs to impress him. I intently listened to the lyrics so I could maybe casually mouth the last repeat of the bridge as if I knew it the whole time and then as I concentrated on each word I heard something about a push-up bra? Oh my God. Wait. Lick your what? Lick your heart? And what did they say about a bathroom stall? My face and ears went hot as another song quickly popped into my church girl brain “be careful little ears what you hear…” Oh come on don’t judge. Guys, I was only fourteen. We didn’t say much as the little Hawaiian girl on the dashboard had me hypnotized while she swayed her hips to this really cool, really *ahem* interesting song. Once we were all seated at Pizza Hut, my date didn’t really talk to me because well, it wasn’t a date remember? As I scanned the table I eavesdropped to find a conversation to awkwardly join when I noticed that one of the girls on my cheer squad was also there. She seemed to always attract the cutest guys and just naturally carried the most attention at a table. She was one of the “it” girls and not in a mean girl “I am amazing and you suck” type way. It was just natural and she was nice to me even though she was an upperclassman. I remember sitting across from her that night thinking, what does she have that I don’t?I mean I am smart too and I am not like really bad looking I don’t think and I’m also a cheerleader. Ugh, I bet she knows all of the words to “Scar Tissue”. Dang it!
Then it hit me. The girl exuded confidence. Confidence with a capital C. She smiled and laughed and was so incredibly comfortable in her own skin at such a young age. This confidence would be something I would lack for years and probably didn’t truly discover until my early thirties.
Fast forward nineteen years. August 2017. I show up to the behavior therapy clinic after work to pick up Isla and the person on the other side of the door is the “it” girl. She has the same curly hair, same smile and same laugh but with much different eyes. I make things so unbearably awkward by calling her by her sister’s name (insert facepalm emoji) and after being kindly corrected I realize through a quick conversation that it’s her first day on the job.
Fast forward one month. September 2017. Day one of Special Olympics bowling practice. I walk into the bowling alley with Isla and the rest of my brood not knowing what to expect and I see the “it” girl who is also a little apprehensive. Her son is twelve. Her son has autism.
Fast forward five months. February 2018. The “it’ girl is M.o.C.h.A. session one and on that night I would learn why her eyes looked so different.
*Caldo – A Mexican soup that breaks ALL of the DASH diet rules by far. (If you don’t know what the DASH diet is, don’t google it… it’s depressing.)
It was a dark and stormy night… no really, I am not being dramatic it was a dark and super stormy night. I walked into Starbucks and was sarcastically greeted with a swift reminder of how old I was. Most people there were collectively about ten years younger than me and were studying. Remember studying? Oh thank the Lord I was not there to study. God is so good. I was in my work scrubs and tennis shoes with unwashed hair holding a really random bag that was not meant to hold a laptop but was holding my husband’s ancient laptop that weighs about twenty pounds and was protruding out the top. I looked around at all of the fancy MacBooks and iPads and Surface Pros and expensive looking headphones and colorful earbuds and started to question everything. I sat there waiting for M.o.C.h.A. one and prayed a quick prayer. “Oh God please don’t leave me hanging. Please give me the confidence I need right now to bust out this huge machine and help change the little part of the world that surrounds me.” As soon as I saw her enter through the side door I just had this sense that I was doing the right thing. We were both doing the right thing.
We sat for three hours. We cried. We laughed. We complained. We brainstormed. We shouted. We whispered. We almost forgot to order the mochas.
She had had a horrible day. Her son had bitten a teacher at school and she was frustrated because he had NEVER in twelve years bitten anyone. She thought it was due to a change in his medications and now she was worried if this would affect his eligibility to participate in Special Olympics and what consequences this would bring at school. I shared with her that one day before our M.o.C.h.A. session my daughter was really giving her teacher a hard time at school and as her teacher moved out of Isla’s way, the teacher landed oddly on a desk and cut her hand. We laughed out loud when I admitted I felt so bad for the teacher that I googled if this was a misdemeanor. I mean isn’t that causing bodily injury?
Oh Jesus help us.
I started by asking her what her baby dreams were. When she was pregnant with this baby boy I wanted to know what she dreamed for him. I expected her to say something about being a successful business man or doctor or anything relatively gender biased like a professional football or basketball player. She simply answered, “In my wildest dreams, I wanted him to live.”
You see, when she was six months pregnant she was told that her little baby boy kicking and moving inside her had a rare genetic disorder called trisomy 13.
80% of children with trisomy 13 die within one month after birth.
She declined the amniocentesis after reading the risks and she was given the option to abort or to carry to term knowing full well the baby would not survive.
Do you know what this woman did?
She walked to her car, looked at her boyfriend and said, “We will give it to God.”
Alright everyone, I know this blog is about autism but I also know that this blog is about the mommas of these children. What kind of woman knowingly carries a baby to full-term while happily participating in baby showers and pamper parties and even decorates a nursery for a child she is told won’t live?
A woman with faith, that’s who.
Her baby was born and did not have trisomy 13. It was a false positive. What he did have was gorgeous gray eyes and just so happened to be the cutest bald baby ever. Oh how she loved on him. All of this baby’s family loved on him.
The first year of his life was a blur and pretty typical for a first time momma and baby. Sleepless nights, failed breastfeeding attempts, spit up, acid reflux, trial and error to find the right formula, and ill-timed, or should I say perfectly timed pamper changes that ended with baby pee in her face. To top it off she had baby number two when her first born was just one year old. Watching her second baby boy progress on target and hitting every milestone made it more blatantly clear that her eldest son was not. At one and a half he was still not crawling and required such a strategic feeding regimen that if not followed to the minute and the ounce would result in explosive vomiting. Naturally, this made eating at restaurants a distant dream. He would grow out of this by the time he was three years old and when it was time for prekindergarten, he was blessed with some great, patient teachers.
However, it was becoming obvious that her eldest son was, well, different. I mean most children at the age of four can seem to bounce off the walls, have trouble sitting down and not be interested in books. Oh no, no, no. This sweet boy was CLIMBING walls, NEVER sat down, and was caught EATING books. There were also big issues with his sleep. It seemed that every night to put him to sleep required SO much time with complete stillness but huge requirements for physical contact. She would have to sit on a hardwood floor in his room, in the pitch dark, with one hand on his back for hours. People, that is not my way of making an exaggeration of five minutes. I literally mean hours. At any given second if she tried to pull her hand softly and ever so slowly away while trying to balance out the pressure of her hand evenly so as not to draw attention to one particular part of his back, he was wide awake. This sleep routine would improve over time as she realized around the time he was five that he preferred to have a thin sheet covering his entire head and body and feet in order to fall and stay asleep.
We could not believe that our kiddos had this in common!
Isla is the exact same way and everyone always freaks out because she herself purposefully covers her entire head completely in order to go to sleep.
Another thing M.o.C.h.A. one noticed that we had in common was that her son exhibited a tremendous tolerance for pain and was NEVER sick whereas her other sons were in and out of pediatrician visits constantly for all of the daycare mystery bugs. Yes, you read that correctly. By the time her eldest son was three, she had two more sons. A single momma to three sons all in pampers. And might I add like really, really handsome sons.
With all of these oddities it was time to be referred to see a pediatric neurologist. Over the course of about one month this little boy would undergo an EEG (electroencephalography), genetic testing and his momma would have to fill out questionnaires and loads of paperwork. When it was time to hear the results, the diagnosis spilled out of the doctor’s mouth so naturally and with absolutely no urgency or dramatics as if he was saying “oh yeah your kid has a cold”. The official diagnoses were autism spectrum disorder (ASD), pervasive developmental disorder not otherwise specified (PDD-NOS) and attention-deficit/hyperactivity disorder (ADHD). The pediatric neurologist prescribed this little four year old boy a stimulant medication for the ADHD and told his momma he would need a follow-up every one to two months. Indefinitely.
I want to pause right here to really drive something home to every single reader. This particular topic regarding the pediatric neurologist, pointless monthly follow-ups for years, and a slew of medications that have been prescribed over eight years for this baby boy, really broke a strong, confident momma down. She sobbed. The guilt that she carried for so long was intense. Heavy. Palpable. I stopped typing at this point to just be in the moment with her. We cried together. She struggled to keep speaking and with every quiver of her lip and shaking of her cheeks I just couldn’t continue. I am not a therapist or counselor nor do I pretend to be. However, I will tell you this the same way I told her. THERE IS NOTHING TO FEEL GUILTY ABOUT. NO BLAME GAME. NO POINTING FINGERS. She was doing what the vast majority of people do when faced with a medical crisis or diagnosis that they know nothing about; follow the doctor’s orders. And some doctors are AMAZING and some are not. Some doctors explain, show sympathy, give you resources and education, and some do not. Some give you a variety of tools to manage behaviors and some only give you prescriptions. Some doctors troubleshoot the side effects of the medication with you by adjusting the dose or the time in which you give the medication and other doctors give you another medication to “fix” the side effects of the first medication. When a patient first gets an autism diagnosis some pediatric neurologists provide you with information about ALL of the treatment options. Some introduce you to applied behavioral analysis (ABA) which is one of several evidence-based therapies PROVEN to be helpful in autism patients and is actually recommended by the United States Surgeon General for two whole years following initial diagnosis. Some doctors do not mention ABA therapy at all…ever.
She left that day from the doctor’s office not comprehending that this was going to be forever. She left thinking that her son would grow out of most of the weird behaviors and so she didn’t feel that all-consuming need to research or educate herself because the doctor didn’t really make it a big deal.
As her son gets older and she realizes the “foreverness” of autism she lives with sadness every day of the reality that her son will miss out on many of the beautiful things that life has to offer her other two sons. But on the other hand, she understands that he doesn’t really know or comprehend what he is missing and he is so content in his world and so genuinely joyful that it helps her cope. The sadness is only hers, not his.
She shared with me that she goes to bed with guilt most nights because she probably yelled too much that day at all her kids but don’t we all? Gosh, sometimes I feel like I could record my yelling and sell sound clips to horror films. I would have wads of cash let me tell you.
She has a handful of great friends that take her dancing and love on her but she has no one in her circle of friends or family that has a child with autism. Until now.
I asked her what she thought her family and friends would be surprised to know about her. She expressed how she knew that most of her life she had to fake being strong. Her natural personality is fun-loving and full of laughter and jokes but she feels sometimes it is a big happy façade that hides a weak person that cries a lot. Oh sister, yes, yes, yes.
M.o.C.h.A. one BIGGEST REGRET: Not educating herself sooner. Like since day one she regrets not researching and asking more questions about the resources that might have been available for her son at that time.
Now some eight years later, after getting a Bachelors in Psychology and maintaining a long-standing job at a bank, this STRONG momma made a HUGE life change. She wanted a career and a job that was more fulfilling and useful and she happened to come across an advertisement for a local ABA clinic and she interviewed having no clue what ABA was. She got the job. First day on the job at that ABA clinic we re-entered each other’s life. She now sees how ABA therapy is making a difference in so many kids’ lives and she uses the strategies she is learning at work on her own son at home. She just can’t shake that feeling of “what if?” What if she knew about ABA therapy since her son was four or any other model of behavior therapy for that matter? What if she had never started medications and tried intense behavioral therapy first? What if she questioned every visit, every drug, and every treatment option years ago?
I asked her point blank, “What do you need the most right now?”
She answered without hesitation, “Schools that are FOR him, not schools that just have to ACCOMMODATE him.”
I immediately got goosebumps and this time I was the one that started to cry. It was that moment when you feel like pounding the table with your open palm and shouting out loud, “Yes girl! Preach it!”
We wholeheartedly agreed that for the most part all of the teachers we had come in contact with over the years had such great intentions for our children. However, some were better than others and there seemed to be an overall issue of lack of training, lack of education on our childrens’ diagnoses, lack of staff, lack of resources, lack of funding, etc. etc. We both had encountered those incredible teachers that just went above and beyond for our kiddos then we had those that after a day of bad behavior would say, “No excuses. He does know right from wrong.”
Beside the point. SO beside the point.
Let me tell you that we M.o.C.h.A.s are very much aware that our kiddos are super smart. OF COURSE they know right from wrong but that has nothing to do with the conflicting chemistry in their brains, the random and unpredictable firing of neurons all over their bodies and countless impulsive motor tendencies that all happen simultaneously ALL DAY LONG when they are stressed, hungry, cold, hot, tired, happy, sad, mad, anxious or pushed to the limit.
The best part of the whole conversation that late night was when I asked her about all the things she loved about her son. Her eyes lit up and she said hands down it is the innocence he has about life, himself, and others. He has a genuine kindness about him and has a deep concern for others that are in need.
So much for autism always being associated with antisocial, huh?
He is fascinated with the movie Lion King and knows the ENTIRE movie by heart. He acts out scenes, roars like Simba when he is angry or happy and even gets his little brothers involved to repeat lines from the movie. He is also 100% convinced that he is going to grow up to be somebody independent and important, no questions asked.
She told me that after reading my book the parts that resonated with her the most involved all of the scenes with June, Isla’s younger sister. She said that she has noticed that her sons are starting to build strong relationships and have started protecting their older brother from bullies and are becoming more aware and sensitive to his needs. Gosh, I tell you what, these boys will absolutely have a leg up in life as they learn true kindness, tolerance, respect, and patience at such a young age.
As for personal lessons learned, her eldest son has taught her how to show and have TRUE compassion for others and TRUE patience. So now she is careful to not speak in metaphors that confuse him and she is more adaptable when he insists that a specific road route is faster and he wants her to take a detour.
She is patient and doesn’t get caught up in the small stuff and if you really think about it, almost everything is small stuff.
M.o.C.h.A. one BIGGEST WISH FOR HER SON: To find and fulfill what makes him the most happy in life regardless of what it is and have income because of it.
We both talked about what made us jealous of other moms that did not have children with autism or special needs. Her answer revolved around embarrassment. She was emotional as she explained that because her son doesn’t act like a “normal” twelve year old his behaviors can be embarrassing and often times she feels judged. We have all felt it. The looks, the whispers, the subtle shaking of the head, and worse that look of pity you throw us now and then. We know you are watching and we know you don’t understand. You see the M.o.C.h.A.s I have interviewed so far all share the same burning desire and overwhelming feeling of responsibility to make our unique and God-formed children behave in a way that is socially acceptable to you. But they can’t. Not because they don’t want to. They can’t. At least not to the extent you may require to be considered socially acceptable.
But then again, what is socially acceptable behavior? Is it not stimming in public so you as an onlooker don’t feel uncomfortable? Is it not involuntarily yelling out loud a funny word in a restaurant because it disrupts your meal a couple of tables down?
OR is it that little kid that is totally NOT autistic but just stole a waffle fry straight from my tray at Chick-fil-A and then said to me, “Your hair is messy.”
I tell you what, that is EXTREMELY socially unacceptable behavior in my book ESPECIALLY because it was cheat day Friday and I had spent the entire afternoon daydreaming about every single one of those golden crispy latticed potato miracles and now my joy was diminished by one. Can I hear an Amen?
So here is the question. I challenge you right now and right here to be honest with yourself in how you would answer this question.
A twelve year old boy with autism is sitting with his family at a restaurant and because he is so excited and happy to be eating his waffle fries he begins to roar like a lion. He roars like Simba. Naturally this attracts your attention and the attention of your children that are eating with you. So you…….what? You stare? You whisper to your spouse, “Oh he must not be well.” You tell your kids to look away? You shake your head and think how undisciplined this child must be? You switch tables?
OR do you smile at his mom and then look at your kids and say, “Isn’t it so cool that God made us all so different?” And because it’s Chick-fil-A and totally kid-friendly you also say, “Who can top that ROAR?? Let me hear it!”
People, imagine what that would be like for that mom. Imagine what that would be like for that little boy. Imagine what that would be like for his brothers.
As for my waffle fry bandit, a couple of years ago I would probably have been pissed and looked immediately for this kid’s mother. But I have Isla and my beautiful girl has taught me so many lessons that it took me a whole book to explain them all. So instead I offered the kid my ketchup to dip MY waffle fry. She politely declined as she wiped her fingers on my purse.
M.o.C.h.A. one BIGGEST FEAR: Death. Not death in the sense of not wanting to die but the absolute paralyzing fear of what will happen when the few people on this earth that understand her son and care for him and love him and know how to make him comfortable are all gone.
I would expand here but honestly this topic is so crushingly overwhelming for me that it would require much more than a blog entry and would need a disclaimer added to the title “NOT FOR THE FAINT OF HEART.”
So because I didn’t warn you first, we will close here.
Anyone up for a dare? I dare you to ROAR out loud right now. Do it! Feels good doesn’t it? Yup. But you did it in your car all alone. What if you did that in public? You won’t do it. Would people look at you different? What if your kids did it? Would you get the ugly “that kid needs a good kick in the pants” stare? I have learned as a M.o.C.h.A. that everybody’s opinion of me is NONE of my business so let’s ROAR today for this kiddo.
Thanks for spending some time in your busy day to view the world through this momma’s different eyes, with a whole new per-spectrum.
I married the cute football player. In case you’re wondering, he is still really cool and really cute.
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