Wildflowers
Hello.
You don’t know me. My name is Carrie.
I just wanted to say hi because I know about today.
Today is the day that somehow divides a childhood, a marriage, and a family. It is both the beginning of something and the end of something all at the same time. There was before, and now there is after; from this point forward everything will feel different, changed.
I know it was hard, hearing the doctor’s words and seeing everything typed out in black and white on all the forms and the questionnaires and the papers.
I know this because I have stood where you stand.
I remember the day that my son Jack was diagnosed with autism. It was a chilly, gray afternoon in November—the kind that makes you put your hands in your pocket and wish you thought to wear a hat. It was a Tuesday.
Before that day, I carried an uneasy feeling around with me like a suitcase full of dirty clothes. I watched him so carefully all the time, and when I wasn’t watching him, I was watching everyone around us look at him and narrow their eyes and look away fast.
Jack and I came straight home after the appointment and right away I called my husband Joe. I told him all about the things the doctor said—how our 18-month old son was on the autism spectrum and he was severely speech delayed and he maybe had trouble relating to others and understanding facial expressions.
On the other end, Joe was very, very quiet. I could hear people in the background talking but he didn’t say a word. Then he offered to pick our other two sons up from the babysitter and grab a pizza for dinner on his way home. I told him that sounded okay.
But when I hung up the phone and looked at Jack sitting on the floor turning a plastic Little People figure over and over in his hand—he was obsessed with Little People in those days—I felt oddly deflated.
I mean, this was the day, you know? For nearly a year we’d been waiting and holding our breath and hoping and not-hoping, and here we sat, holding a diagnosis in our hands like a shiny new penny. It deserved attention, or some kind of acknowledgment. I wanted to recognize it; to name it.
When Joe got home we just ate our pizza quiet-like and gave the boys a bath all together in the big tub upstairs. After they went to bed we I sat on the couch together, holding hands. I may have cried a little bit.
Jack is twelve now. I think you would like him.
Or maybe not. Maybe meeting him would make you feel a little nervous. Maybe you would hear him ask ninety-two thousand times if we’re having chicken for dinner and watch the way he picks at his cuticles and you would think to yourself there is no way you can handle this, it’s too much.
It is too much. But still, I know you can handle it.
I don’t need to tell you that statistics show a sharp rise in autism spectrum disorder around the world and now it’s estimated that nearly one in sixty-eight children are affected.
I don’t need to tell you about the way you will toss the concepts of high functioning and low functioning around in your mind like a poker chip on a long, smooth table in a Vegas casino.
I don’t need to tell you that autism can blow a marriage apart.
I want to tell you the things you don’t already know.
If I could, I would both take your hands in mine and look into your sad, tired eyes and tell you the one thing no one in the world will tell you.
It is not your fault.
That’s right, it’s not your fault he has autism.
It’s not because he slept alone in his crib instead of in your bed, or because you chose to use a bottle instead of breastfeed.
It’s not because when he was a toddler you fed him M&M’s so he would sit on the potty even though M&M’s have red dye in them.
It’s not because you vaccinated.
It’s not your fault, my sweet scared fragile autism mama. Let me, a perfect stranger, absolve you of your imaginary sins. Forgive yourself.
There’s one more thing I really want you to know, and it is this.
You are not alone.
Can you hear me? Can you hear my voice? You are not alone. You never were.
I mean, look at it this way; if one in sixty-eight children are diagnosed every year, and there are a lot of children all over the world, well, then this means there are approximately forty-two million thousand other moms just like you.
Moms who cry themselves to sleep at night, and wonder what will happen if they were to die suddenly, and walk into story time at the library with sweaty hands and a pit in their stomach.
We stand together with you, always.
All those hard, hard years when Jack was a little boy who never slept and scripted random passages from his Little People videos in a stiff, robotic voice, all I wanted was for someone to tell me how this was going to turn out. I longed to know another autism mama who was maybe five or six years ahead of us.
Right now, you are at the beginning and I am somewhere in the middle and neither one of us can see the ending. I promise you, though, that if you can remember it’s not your fault and you are not alone, well, you can do anything.
You can get through the tantrums and think about having another baby and lean against your husband’s shoulder after a long, hard day.
You can find sweetness in the silence, and magic in the mess.
You can repair, and love, and laugh.
Sometimes, when I’m feeling sad or depressed or at the very end of my frayed rope, I imagine the entire round earth covered in wildflowers—even Antarctica, where I think it’s hard to grow stuff like that because it’s really cold.
I close my eyes and everywhere I look there are red and pink and purple and yellow and white flowers with brilliant green leaves and long, strong stems.
Some need more water than others. Some need extra fertilizer, or a certain kind of soil in order to grow. Some tilt their silky blossoms to the bright orange sun and soak in as much heat as possible, while others curl inward toward the cool, dark shade.
Each and every one of them is different.
Yet each and every one is a flower. Each is colorful and beautiful and vibrant and rising.
It’s not your fault.
You are not alone.
I think I’m going to call it Jack’s Day, after my own special wildflower.
October 3, 2016 @ 11:47 am
Thanks for this insight. My neighbor’s son is a 6 year old with autism. Although she (the mother) is socially withdrawn, I better appreciate the challenges, and I hope, the joys she experiences every day.
October 3, 2016 @ 12:39 pm
Carrie, I often feel as if your posts speak directly to me, one mother to another. This post is actually written specifically as if you know me & understand mine & my family’s struggles & are talking to me. That sounds a little silly, but it’s true. I would enjoy reading your blog even if I did not have an autistic son, I love the way you write. But I do have an autistic son & we are at the beginning of a new life journey that is all wrapped up in this spectrum thing. When I read your beautiful raw words I often cry or laugh, because you ‘get it’. If it’s ok, I would like to email you to share my story. I’m very alone & overwhelmed in this life right now & long for someone to talk to who really ‘gets it’. I don’t expect us to become long distance internet friends or something. I just want to tell you about me & my family because I know so much about yours even though we have never met & live far away from each other. By the way, I live in Wyoming. I remember from some of your back posts I read that your son used to dream of visiting here. I thought that was cool 🙂 Thanks again for writing, I look forward each week to reading. I will email you sometime. Maybe not this week, as I am actually trying to prepare myself for my son’s first IEP meeting. It’s in 3 days & I’m freaking out a little. He is only in kindergarten & I can’t believe this is happening. Anyway, happy Monday 🙂 -Heather B.
October 8, 2016 @ 8:14 am
Heather, please e-mail anytime…carrie@carriecariello.com.
October 15, 2016 @ 3:21 pm
Heather. Feel free to email me as well. Terismyth64@gmail.com or read the book my husband wrote called “Andrewtism”
https://www.smashwords.com/books/view/401030. So inspiring. Keep the faith.
October 3, 2016 @ 1:00 pm
Thank you, your words surrounded me with love. I know I’m not alone but often feel it. I have yet to know another a
Parent personally dealing with this as my son is also 12. So thank you!
October 3, 2016 @ 1:55 pm
Thank you for writing this post, Carrie! My son was formally diagnosed last month and I have been overwhelmed. I was overwhelmed before but something about the official words on paper brought tears. Your words today are the huge hug I needed to soldier on. Thank you!?
October 3, 2016 @ 2:49 pm
Christina,
The words and thoughts of Carrie transcend all the things I could say to you today, and Carrie says it best. You are not alone, as I was, and still am in comparison to the spectrum. But I have found other parents of children with rare disorders like my daughter (Angelman Syndrome-rate of 1 in 20,000 births) who have helped me cope these 31 years of her life. And, bloggers like Carrie have certainly helped also. May God bless you on your journey. It will have many of the beautiful flowers Carrie talks about.
..thoughts from California
October 10, 2016 @ 11:25 am
Thank you, for your kind words, Scott!
October 3, 2016 @ 6:05 pm
My son is in managed recovery from ASD. He regressed from a medication and vaccines. Recovery is very possible. Your kids can feel better, and not have heavy metals and viruses from the live bacteria and junk injected into their little precious bodies. The libe viruses cause an auto immune reaction much like the other dozens of auto immune diseases. Healing happens daily. Don’t wait cause your kids will be in their teens or older by the time you awaken and realize this is a doable journey.
October 4, 2016 @ 12:51 am
thank you. sometimes you really need to hear…it’s not my fault and I am not alone. Thank you
October 5, 2016 @ 12:18 am
here is someone who knows what taking responsibility is about. Don’t enable these companies to keep poisoning and harming our children by denying any culpability in the hand you played in your child’s brain damage. I really don’t want to be harsh here, but you are a popular author who has a large group of people who depend on you to be honest. http://thinkingmomsrevolution.com/how-i-gave-my-son-autism/#comment-193650
October 5, 2016 @ 2:38 pm
I’m not one to start or step into debates on threads of comments on the internet, but in this instance I can’t just hold my tounge. I pity people like you & Jackie up there who go around spewing your uneducated garbage about autism to the world, usually targeting other parents who are confused & hurting inside. I’m sure you ladies have read all of Jenny McCarthy’s books & give your children bleach enemas too. There has been autism since humans have existed, long before vaccinations. It’s genetic & just a naturally occurring variant in the way neurons are laid out in the brain. Luck of the draw, really. If you ladies dug deeper into actual science literature (new research, not the outdated biased bullshit floating around) you may be enlightened. Or maybe read something worth while like Neurotribes by Steve Silberman. Autistic people have always been, but it used to be that they coped, adapted & did their best to blend in to society, or they were hidden away from the world in asylums to rot until they died, often suffering unimaginable abuses & torture. Some still do suffer at the hands of their caretakers who think they are damaged & defective & abuse their children under the guise of ‘fixing’ & ‘curing’ them. The only way to ‘cure’ autism would be to open up the brain & rewire it. What autistic people need is love, acceptance & support from their family. Which is what Carrie Cariello does for her son. She is honest & never tries to pretend to know about things she does not( like you ladies), she writes about her own life & experiences within it. Parents should check out some blogs written by successful adult Autistic people, like Nick Walker, Judy Endow & Michelle Sutton. There are more out there but these are good places to start. Don’t buy into the fear mongering anti-vaccination rhetoric. Your children just need & want your love & support, give them that & they will be ok no matter what!
October 5, 2016 @ 3:08 pm
Thank you, Heather. That needs to be said, and you did it extremely well. I’m not a scientist or medical researcher, just a dad who tried to find out what happened, like “What did I do wrong, or who can I blame?” It took almost five years but my girl was finally diagnosed, correctly. No she is not on the spectrum, but some similarities are there, along with dozens of other conditions that have corresponding attributes, none of which really fit her. I do read copious amounts of research however, and it all boils down to “They don’t really know why.”
My girl has a rare syndrome, but none of the approximately 2,000 in the US have all of the characteristics, because we all come from different generations of the gene pool. And that mixes things up.
But I sure did want to blame it on that elusive “Somebody, or something” over 30 years ago. Now, I just try to cope with the day-to-day, and rely on other parents for information as to what has helped with their family, and then consider if I want to try doing those things for/with her. The specialists offer advice, too, and have multiple contacts with individuals they have had contact with, but few of the “professionals” get to live our lives.
God bless us, everyone.
October 15, 2016 @ 3:17 pm
HI Carrie- I can also remember the day my son was diagnosed w autism. I may have lost a piece of myself that day. Like the way I looked at the world. I was naive and innocent and didn’t have a clue about how to go about raising a son w autism. Would he graduate from middle school and high school? Would he have any friends who would love and accept him for who he is? Would my husband and I agree on circumstances when things got tough? It was all an unknown.
Yet all is ok. I became a fighter and an advocate for my son so he could get services from the school district. I begged and pleaded w teachers and now professors since he is in college now on ways to manipulate the system. I didn’t let anyone get in my way of keeping my son on track. Yes. My husband and I have disagreed on many occasions regarding how to raise our son. But I can’t complain. We don’t have it so bad. We all want the best for our sons and daughters on the spectrum.
And Andrew HAS friends. Lots of them. He got involved with the choir in college and that has been a blessing. He reaches out to friends and acquaintances whenever he can. He is writing a piece of music that raises awareness on autism. He has plans on asking all of his choir friends and musicians to perform a concert and have him conduct them. He is passionate about helping others who have walked in his autism shoes.
Of course, my goal is to get him graduated from college. He is in his 6th year and after this semester has about 2 or 3 classes to go. He is close. So close. Yet he can get distracted when he chooses to write his music and not write his essays. He gets distracted when he decides to play video games for hours and forgets to eat. He gets distracted when his boss at the Taekwondo studio asks him to work extra hours even though his paper was due yesterday or last week.
Yes. I have a job to do. My job is to make sure my son gets the help he needs to get through his classes. It may be listening to Dante instead of reading it. It may be writing to his professors to let them know “where he is at” emotionally before he checks out and gives up as he has done in the past. Its a process Carrie. My hope for you is that you stay the course. Do not give up. No matter what happens, you will always have a voice and advocate for your son.
He is special. You are the lucky one to be given this boy. It may not seem that way now, but just hold on. He may surprise you someday and be a famous composer, conductor or writer. Enjoy the ride…
Teri