I thought I’d start off this year getting back to basics. However, in case you’re just joining me at Life Beyond Surviving here in 2020, I thought I’d start at the beginning of how and why I started this blog. I’ve always sought to be understood because I’ve never been able to fit in with the crowd. My life has always been a bit quirky. I guess you could say I’m not your average Jo…Jo!
I’ve always been different, weird if you will. So, I understand how important it is to be supported for who you are and the different circumstances you find yourself in. That is the essence of chronic illness, isn’t it? We don’t feel most people get us. Sometimes when you have been through so much you find yourself asking God why. Why me? Why so much hardship? Why can’t I just be normal?
Why? In my case, I think it’s because I can help others…and I have never been normal…
I’m only 5′ tall, wearing children’s shoes, hats, and gloves. I used to sit on a telephone book in order to see over the steering wheel.
I was born to Atheists of Jewish descent, married a nonpracticing Catholic and became a nondenominational Christian because of Amway meetings and a Jehovah’s Witness that came to my door.
I’m an older mom having had my first at 27 and my second and last child at 36. I didn’t vaccinate my son though I did my daughter. Both my kids are incredibly intelligent. My son is that as well as Autistic or what they used to call Asperger’s.
I chose to homeschool my kids and for seventeen years we fielded all sorts of questions about socialization and getting into college. In case you’re wondering, they both were able to hold their own during the inevitable inquisitions from cable guys to relatives and went on to elite universities.
I’m weird in my medical history as well. Having had Fibro since I was a teenager and several other issues shortly after giving birth to my son at 37, I’m all too familiar with the misunderstandings that chronic illness has in the general community.
In addition to Fibro, I’ve struggled with perimenopause hot flashes for over twenty years. I also have Essential Tremors, Arthritis, Osteoporosis, and I can’t even remember all the rest. In addition, I’ve had nine surgeries in my lifetime. Five of them in a 2.5 year period of time including one due to cancer.
I’ve been married 33 years. I’ve been a mom for 30 years, I homeschooled for 17 years and I’ve had chronic illnesses spanning most of my life. I have a wealth of knowledge about several topics and how to do them with chronic illness.
“But do not forget to do good and to share, for with such sacrifices God is well pleased. ” -Hebrews 13:16
My heart is to share my knowledge and support others who are struggling with chronic conditions. My mission is to help them see the joy, the light, God’s light not just at the end of a tunnel (trial) they might be going through, but INside the tunnel (during the trials that are so long they don’t end this side of heaven).
I had intended to make this a four-part series, but after completing the last part of what my son calls Shock and Awe-tism, I wanted to include some links for more Autism information and some inspiration as well as some ideas and food for thought.
Sometimes a pet can help calm…
Here’s an article about a book advocating the benefits of not keeping your ASD child in their comfort zone. We did this a bit with our son and it seemed to work for him. He would scream and hold his ears when in situations that were loud. Loud to him was a restaurant or church service. Sometimes we had to be in a loud environment and we tried to calm him by giving him a handheld electronic game to help him focus and that seemed to tune out the outside noise.
Once when he was very young, we went to a Fourth of July Fireworks show. On the way home he said, “It changed my brain.”
Here’s what the article says about this book: “A new autism book, The Loving Push, encourages parents to gently and lovingly nudge children on the spectrum to perform activities outside their comfort zone.This book is written by Dr. Temple Grandin, a leading spokesperson on autism, as well as psychologist Debra Moore.“
Dear Mom of High Functioning Autism article rang true for me with my son. I found many support groups that I didn’t feel helped me or my son because I didn’t quite fit in. I felt bad even saying my son has Autism because I didn’t have to deal with many of the things they did. However, I did need help with my son and he certainly did as well. Thought it might help some of you out there.
Here is a video about an organization called SPARKS that is looking at a genetic reason for Autism.
Here are a couple of videos that show how AWESOME people with Autism can be and it is part of the reason my son calls my series Shock and Awe-tism:
Guess who didn’t know he had Autism til he was 70?!
Please do me a favor and share this post on your social media platforms and with anyone you know how might be struggling to understand their child. Or with anyone who has an Autistic child and is in need of some inspiration. God bless all the unique individuals out there!
So, if you’re just joining me in this last of my four-part series on Autism, you can go back and read why I’m writing this, my experience, and what Autism is not. This post talks about what things you can look for to find if your child might be on the Autism spectrum.
There are two core symptoms that usually begin in early childhood (although they may not be recognized as such until later on). These issues persist as the child grow to some degree and interfere with daily life. The first is some social communication challenges and the second is repetitive behaviors. As I’ve said before in previous posts, these may vary in severity and differ from person to person.
Since this is a complex issue, it’s best to have your child formally assessed by a professional. This article is for informational purposes only. I’m no expert, but I feel strongly that if I had access to this information when my son was young, I could have helped him feel less frustrated and he wouldn’t have blamed himself for so long.
Here are some of the things you may notice in your child that could lead you to suspect he or she might be on the Autism Spectrum. I’m going to break them down into categories to make it easier to visualize. Remember that each person will be different. Not all Autistic people have all or even most of them. This is just a list I put together after having done some research in order to make it easier for you to determine if you should take your child to a professional to get more individual information.
Social and Communication Challenges: Difficulty with verbal and nonverbal communication including: * Gestures * Spoken language (1/3 of Autistic people are nonverbal) * Eye contact * Facial expressions * Lack of empathy * Expressions not meant to be taken literally * Recognizing emotions or intentions of others * Expressing emotions * Feeling overwhelmed in social situations * Taking turns in conversation * Gauging personal space * Difficulty understanding other people’s feelings * Preferring to play alone or difficulty playing with others * Not taking part in “Make Believe” activities * Not recognizing sarcasm or joking
Repetitive Behaviors: * Rocking, flapping, spinning, running or walking back and forth * Repetitively spinning wheels, shaking sticks, flipping levers * Staring at lights or spinning objects * Ritualistic lining up of objects or touching them in a particular order * Narrow or extreme interest in specific topics * Resistance to change or rigid adherence to routines * Self-abusive looking behaviors like hitting themselves with objects
Other Behaviors and Behavior Patterns: * Loss of previously acquired speech * Preference for solitude * Delayed language development * Persistently repeating words or phrases * Unusual intense reactions to sounds, smells, textures * Abnormal body posture or walking on toes * Flat tone of voice or monotonous speech * Difficulty learning or learning disability * Sleep disturbances (my son had waking nightmares) * Avoiding or disliking physical contact * Fussy eating * Lack of coordination or clumsiness * Aggressiveness * Short attention span
Other Profiles: If you haven’t read my son’s story in the first of this series, you can go back and read part one. However, my son is only one of many ways in which a person can be Autistic. So, I’ve found a page on Autism Speaks that gives various profiles of different Autistic kids that you can read through to get more of an idea of how Autism can manifest itself.
I hope this has helped you to get a bit of information on what Autism may look like. I pray you find your answers. Please comment below and let me know your situation. I’d love to hear from you.
Do me a big favor and please forward this blog post to all your social media accounts. I’d love some help getting the word out!
So, I’ve talked about what started me on this series and my experiences with my son. Now it’s time to talk about what Autism is NOT. The reason I bring this up is, as I said in my first article in this blog series, there are as many ways to be Autistic as there are Autistic people.
Aside from a profound lack of information on Autism in the public eye, there is a stereotype emblazoned in our minds by Hollywood as portrayed in television shows and on the big screen. If your kiddo doesn’t act like that, then Autism is quickly dismissed. That’s what I did. For 17 years, it never occurred to me that my son could be dealing with Autism. NEVER. In fact, we have family members who still don’t believe it because Chris doesn’t act like the typical Hollywood stereotype.
The Hollywood Autism Stereotype Hollywood’s idea of Autism has always been limited to a five-year-old child who never looks anyone in the eye, doesn’t like to be touched, has no sense of humor, rocks back and forth, screams in public, and has no friends. This is NOT the only face of Autism.
Autism is a spectrum of many issues that come in varying degrees of severity. Some have a few of them. Others have more than a few. Some have the very same issues but on a completely different level of severity. I liken it to Fibro. Fibro is a collection of symptoms, but not everyone has the same ones nor do each have it to the same degree. My pain isn’t as high as some and fatigue is my most severe issue. Others have less fatigue but more pain and then there are all the other symptoms.
My son looks people in the eyes when he speaks, has a fabulous sense of humor, loves hugs, and is quite popular with serious minded people. On the other hand, he paces back and forth when he’s trying to focus or feel comfortable, has a hard time concentrating and focusing at times. As a child, he used to scream in public when he had too much stimuli, but he had been able to overcome most of that by the time he was a preteen.
Chris doesn’t give off Hollywood’s Autism stereotype. He, as most Autistic people do, has a unique set of skills and issues to work through. But there is one more major stereotype I’d like to address. Part of this has roots in the Hollywood image of Autism and part of it is a bit different.
Intelligence Autism Stereotype: One of the reasons people don’t believe my son is on the spectrum is because he’s incredibly smart. I’ve never had his intelligence tested, but I’m fairly certain that a kid who taught himself to read at the age of three with the help of a computer program designed for third graders and was able, at nine, to beat adults at chess, is pretty smart.
The notion that Autistic people have to be unintelligent is plain wrong. The Autism spectrum includes an array of people all over the intelligence map. Some, like my son, are brilliant. Until recently when the Autism diagnosis was updated to include other forms of Autism, it would have been called Asperger’s. Because of the stereotypes and for clarity’s sake, I use the term Asperger’s or “On the Spectrum” when describing my son.
Now that you know what Autism isn’t…or rather what isn’t the ONLY description of Autism, I’ll be back next week to give you some things to look for that may indicate what Autism is in your child.
Please do me a favor and forward this blog post to all your social media accounts. I’d love some help getting the word out! I’m sure there are other moms out there desperately searching for answers as I was a few years ago.
Last week, I shared why I felt it was important for me to talk about the topic of Autism. This week, I’d like to give you a little background as to why this topic is near and dear to my heart. It’s personal for me because my son is on the spectrum and because I was entirely clueless for the first 17 years of his life!
My inability to understand him caused him great frustration and I wish I had known earlier so that I could have helped him. When I told him that this topic was on my heart to write about, I asked him if he would be okay with me sharing a bit of his story. Not only did he agree, but he was quite insistent that I share details so that other moms would have more information. With that in mind, I pray this series will help other moms who may not have any idea that their child is dealing with this.
So, a little background:
My son, Chris, was always an incredibly bright boy. He taught himself to read by using Jump Start Third Grade on the computer when he was only three years old. He spent six hours a day on that computer standing up so he could reach the keyboard. I had told him that this computer game was too advanced for him and that I didn’t have time right now to answer all his questions. So, he figured it all out on his own.
One day, I came downstairs to find he had the English subtitles on the TV. Thinking he had messed it up, I “fixed” it only to find them on again later. This went on for about two weeks until I finally asked him if he was doing this on purpose. He said he was learning to read. A while later, I came downstairs to find the Spanish subtitles on. I never again told him he couldn’t do something because it was too advanced!
Chris was always impressing adults. He played chess with adults when he was about 9. Once, at a party, I had a series of moms seek me out to tell me how articulate he was on a variety of topics. He had mastered just about every hand held and computer game he got his hands on.
On the flip side, there were things that he did or didn’t do that had us scratching our heads. While he was able to hyper focus on the details of a game, he was completely unaware of a big truck headed right for him in a parking lot. He could recite Sponge Bob episodes word for word having only heard them ONCE, but he couldn’t remember to bring down the book I asked him to get from his room. He’d go up to his room, immediately see something that he wondered about and I’d find him up there playing with the carpet fibers.
At two, Chris hated the feel of grass on his feet, loud noises, long pants, buttons on his shirts, and would only eat one food for breakfast, lunch, and dinner…until that food was replaced by another food. At three or four, he stopped speaking for eight months resorting to grunts and pointing. I was just about to consult his doctor when I turned the corner and found him talking to himself and looking at me as if the jig was up! At five or six, I still had to sit beside him when he was eating to remind him to chew and swallow so he didn’t get distracted by the fly on the wall and choke when he took a breath to ask me how it could stick on the wall like that. At about 10 or 12, he had no idea how to answer certain questions that seemed to be fairly obvious.
“What grade are you in?” was met with a long blank stare. Later, we found out it was because he had no idea how that was meant. The grade he was supposed to be in if he were in public school? The grade assigned to most of his homeschool courses? The grade of his highest course? He was in higher math and science courses in junior high.
While his oral communication skills were quite advanced, he wrote essays as if he were a first grader. His handwriting was awful. This didn’t seem consistent with other things I knew about him so I had a thought. I asked him to type his essay over. Same topic. Same prompt. Night and day difference! Not only was his sentence structure and grammar better, but his thoughts flowed and it was quite a persuasive essay! More on this at a later time.
By the time Chris was 17, we realized he was having trouble in two of his courses. At the time, I didn’t understand why he didn’t just tell me he was having trouble. I didn’t understand how to help him. He could memorize a ton of information, but couldn’t figure out how to organize his notes or focus or be able to pick out which items where important to study and which parts of the book were less likely to be on the test. Also he couldn’t manage to focus if the test was much longer than an hour.
This time my internet search found much more than just Sensory Integration Dysfunction. I began to suspect that he might have Autism. That lead me on a race against time to try to find someone, anyone, who would take on a child of 17! Most therapists took kids from four to about 12. I must have called every number I found in a tri state area who might help until I finally found someone who got him to a doctor who finally diagnosed him with what most people would know as Asberger’s.
The reason it was a race against time was that I was told that in order to qualify for accommodations for the SATs and at a university, he had to be diagnosed by the time he was 18. It usually takes 1.5 years to get in to a doctor who could do the diagnosis, but we were rushed through and he ended up being diagnosed just a few days shy of his 18th birthday.
This is, of course, not his whole story. I just wanted to give you some background so you know where I’m coming from. Had I known that he was on the spectrum when he was young, he wouldn’t have spent all those years finding work-arounds for his focusing and organizational issues where he blamed himself and thought it was all his fault. If I had only known earlier, I could have saved him the frustration of trying to figure out what people meant by the seemingly easy questions he was asked instead of feeling alone, like nobody understood him.
I’ll share some more about him in later posts, but for now, I’d like to say how incredible my son is that he was able to figure out how to do so well for so long with such struggles only he knew about at the time.
If you have a child you are desperately trying to figure out, please stay tuned to this blog for more on Autism. And please forward this blog post to all your social media accounts. I’d love some help getting the word out!
There are some Facebook “awareness” posts that have bothered me for quite some time. First there was the one that had women posting a color: “Red” or “Pink.” Then, when friends would ask what that meant, they’d get a private message that said something like, “Aha! You should never have commented on my post! Now you have to post the color of your bra. Don’t tell anyone what it means. This is for Breast Cancer Awareness. Don’t spoil the fun!” Another more recent one was for Autism Awareness. This one just said, “There was a squirrel in my car!”
I never did understand how this promoted awareness if nobody knows what it means unless they comment. First, there probably isn’t a person on Facebook that has never heard of breast cancer or Autism. What they aren’t aware of, and what these posts never share, are any details of what to look for.
Since my son is on the spectrum and I would have been exceedingly grateful for any details when he was a boy, the next four posts will be devoted to what I call Real Autism Awareness and what my son says is Shock and Awe-tism because many of the things you’ll learn this month will be quite new to most of you. Autism is misunderstood by most and if I had been made aware of these things, my son wouldn’t have spent so many years frustrated and blaming himself.
Before I get started, I’d like to share a couple disclaimers: 1. I am by no means an expert in Autism. I’m just a mom who has some better insights into her own son and wants to help other moms with their children if at all possible.
2. Despite some of the comments I’ve gotten, my intention is not to “spoil the fun” and I do understand that most people posted these things thinking they wanted to help. I would just like to bring some real help…real awareness to those who need it because there is so little out there.
With all that being established, I’d like to give you the first and most important thing you’ll learn about Autism: There are as many ways to be Autistic as there are Autistic people! Autism isn’t just what Hollywood shows you in movies and TV shows. Autism is a spectrum of issues. Some Autistic people have some. Some have others. Some have a few. Some have many. Some have one that is a huge issue. Others may have that as a minor issue. Some Autistic kids will display certain things that make you think they are different and some, like my son, don’t and you’d never know it to look at them. But they struggle anyway and I’d like to help!
So stay tuned to my blog for three more important Real Autism Awareness posts. I hope you’ll share them all over social media and with your friends who may have a child who is unique…like mine! Now, THAT’s Real Autism Awareness!
Life has a way of twisting and changing, especially as you grow older and especially when you have chronic illness. These changes lead me to make the decision to return to posting here.
Change#1: I have been classified as Medically Frail. The way some people collect stamps, I collect diagnoses. My latest ones are Essential Tremors (ET) and Esophageal Dysmotility. So, I shake, rattle, and have a hard time controlling my throat muscles when I need to swallow…at times.
Change#2: There’s been a computer substitution. The two things that affect me the most right now are Fibro and ET. But it turns out having your fingers shake makes it a bit difficult to use an iPad and that’s how I was able to get online ever since my computer decided to retire. We had to get our son a new laptop to be able to continue to do well in the Film Department at Purdue so I have inherited his old laptop. So, this and future blog posts are brought to you by RAMbus Maximus. RAMbus Minimus, my iPad, is taking a much needed vacation.
Change#3: The Facebook Shuffle. For almost ten years, I’ve been growing a fan page over on Facebook I named after my blog, For the Love of Purple. When I transitioned to my new laptop, Facebook decided I needed to prove I was me in order to continue to have a voice to over 9100 Facebook fans. Unfortunately, Facebook wouldn’t send me the codes they want me to input and I tried so many times, it has locked me out until such time as Facebook decides I am worthy. I’m afraid my research indicates that it will probably never find me worthy and come June 3rd or thereafter, I will no longer be allowed to post as Admin.
Change#4: I feel God leading me in this direction. After each of these changes, I have felt more strongly about sharing information, support, inspiration, and humor to uplift those who struggle with chronic illness and conditions. In fact, something that was being posted on Facebook prompted me to want to include Autism in that mix as my son has struggled with his Autism and I find very few people really understand it. To that end, I’ll be starting off this month with a short four part series on what Autism is and what it isn’t. I pray that this short series will help other moms who, like me, had no idea the struggles their child faces might be Autism.
I have a heart to help others who feel alone, struggle with conditions they don’t fully understand, or just feel like they need a place to be uplifted. I’d appreciate your help. If you find my posts helpful, would do me the honor of sharing the blog posts with others who need some inspiration, comfort, and love? Thank you!!
