Animals & Autism
I’ve long wondered how, or even if, Ben would connect with animals. There is a great deal of research which supports the idea that children with autism benefit greatly from having therapy animals, particularly dogs, as part of their service team. While he doesn’t run away scared, Ben has yet to really connect with our dog, Tinker. Perhaps it’s because Tinker isn’t a trained therapy dog. Perhaps it’s because Tinker is a very large puppy and as such has a great deal of energy which she struggles to keep contained when around the kids. Hmmm….sounds like she and Ben may have a bit in common. Or perhaps, he just doesn’t connect with dogs.
I recently read an article on www.drivelivestock.com entitled Life Lessons from Livestock. I was raised on a diversified livestock and grain farm in southern Illinois. I know the joys of raising steers as bottle calves and the heartbreak of sending them off to market. I still remember riding mom’s favorite boar as if he were a horse, as well as the tears that fell when he, too, went to market. I can recall the names of every “project animal” I raised and fun stories to go with each one. I know the impact animals had on my life, in shaping who I am and how I manage things, but I still wonder if our son will be anything like me in that regard, not just because of autism, but because everyone is different.
The article relates the experiences of a high school ag teacher and how some students with autism showed tremendous progress with life skills when coupled with an animal which was theirs to care for and show. So many aspects of his project carried over into everyday life: Caring for an animal lead to self-care skills. Tending to an animal’s living quarters lead to a cleaner bedroom. Presenting an animal in the show ring and answering a judge’s questions lead to better social skills.
It’s all quite amazing and so intriguing to this animal agriculture rooted momma, but I still wondered, “What about our son?”
Our oldest three kids have gotten involved with the beef cattle industry thanks to 4-H and FFA. This has changed a few things in our family life. Lazy Saturday or Sunday afternoons used to be spent all curled up under blankets watching a family movie. Now, it’s a family effort to get the bedding changed and cattle washed down. This might sound a little like work, and it is, but it is also the basis of some wonderful memories, especially for the kids investing in the animals. We’ve seen the kids grow in their confidence and self-assurance when dealing with the animals and we’ve watched them take pride in their endeavor as they share the ins and outs of it all with their friends, even encouraging them to come on in and pet the animals. Since the weather has warmed up, we’ve even seen our younger two kids, ages 6 and 4, pitch in to help get fresh bedding into the barn, lead them around the lot, and comb the animals. Yes, even Ben.
We spent a great deal of time on these tasks as a family the other day. All seven of us were working either a pitchfork or a rake at the same time for a bit before we took to the divide and conquer method of accomplishing tasks. In all my years of raising cattle, I don’t recall ever having animals this tame – tame enough to leave the gate wide open while bringing in bedding; tame enough to brush and clean without being tied out; tame enough to stand for a six-year-old boy with autism to comb their hair unassisted.
I marveled at the gentleness of both our son, as he instinctively combed up the steer’s belly, just as he had watched his brother, and that of the steer as he just stood and watched Ben do his thing, seemingly listening to his banter.
At one point, Ben said, “Hey, Cow, come give me a hug.”
I had to laugh as Doc turned to Ben because the look on his (the steer’s) face was hilarious. I’m not sure if he actually said, “C’mon over.” or “Dude, I’m a STEER!” but Ben took it as an open invitation and snuggled right up. This moment: Priceless.
I can’t say for sure that helping tend to the cattle will help Ben tend to his own needs, but I do know anything that helps our son engage with us as a family is a keeper in our book!
We’ll Get By (The Autism Song)
I’ve shared here before that music stirs my soul. It really does. Music can lift my spirits on a rough day and calm my soul in the midst of an emotional storm. So when I read that singer/songwriter Johnny Orr had released a new song, “We’ll Get By (The Autism Song)” to support Blooming with Autism, an organization which helps supply families dealing with autism with the necessary resources,I couldn’t wait to give it a listen. The tune is catchy but relaxing, so it put me just in the right frame of mind to soak in what was sure to be a new favorite. Here are the lyrics:
Maybe I don’t speak too well, but I’m coming outta my shell
And I like playing by myself, if you can’t tell
I like to go to school, yea I’m a miracle
And I’m glad to be alive
If you’ll wait patiently, well then eventually
I will understand the words that you’re saying to me
My autism, is like a prison, that I’m in
I share my heart, but only in my mind
I share my pain, when I scream at night
I can’t express to you what I’m going through
The only way is for me to cry
Mom, I see your fears through every single tear
Just to know I’ve caused you pain from inside of here
My autism, is like a prison, that I’m in
I share your joy, but only in my mind
You show me love, but just not in my time
Cause my reality, takes everything of me,
To make it through without a fight
And I know you love me when you hug me
And when I hear you pray to God for Him to heal me
Maybe one day, you won’t have to pay,
And I won’t have to see you cry
Maybe one day, I won’t be this way
Until then, we’ll get by.
I have to admit, more than a few tears were shed over this song, but I will also share that I wasn’t the only one crying. It was a mixed bag of emotions that was opened as we discussed how we felt about the song.
At first, I liked it, but saying that an autistic child likes to play alone, that doesn’t match up with what I’ve read in the book The Reason I Jump by Naoki Higashida, a 13 year old boy with autism. Naoki contends that it isn’t that children with autism prefer to play alone, but that they simply don’t know how to play what their peers are playing and because autism so heavily affects social interaction, it’s difficult for them to interact with other kids so they can learn. From our experiences with Ben, I can say Naoki’s explanation makes a lot of sense. When we join him in his world instead of insisting on pulling him into ours, we are met with giggles and laughter, smiles and eye contact that could fill neurotypical parents with envy.
Shortly thereafter, Orr sings, “My autism, is like a prison, that I’m in.” A prison? Really? Upon hearing that line, I suddenly got very defensive and began to formulate my argument that he obviously doesn’t know what he’s talking about. He doesn’t live the life. He doesn’t have kids with autism. He doesn’t have autism!! And then it hit me, neither do I. Sure, I have a son on the spectrum, but all that means is that I have a parent’s perspective of the spectrum. I’m not actually the one who is experiencing autism first-hand. Ouch! Busted by my own thought processes.
For the most part, I feel like the song does a very nice job of encapsulating some of the more pressing emotions of our autism experience. However, I really struggled over the idea that our son is in a prison. He sure seems to be a happy little guy, except when he’s not. And then, he’s really not. It got me thinking and because I’m not the one with autism, I honestly don’t know what’s like. If I were to be completely honest, I’d have to admit that sometimes it does feel like our boy is right there, just beyond our reach, and we just don’t have the keys to unlock the gate. Hmmm…perhaps like being in prison?
I struggled for the better part of the day trying to wrap my mind around this notion and because Ben isn’t developmentally able to listen to a song such as this and tell me what he thinks about it or how it makes him feel, I realized I was getting nowhere fast so I contacted my online friend, Brent Krauth. Brent is 28 and still living with his parents, but working very hard to gain his independence. He has ADHD, OCD, and autism. His dream is to be an inspiration to others and to help as many people as possible to understand autism.
I asked Brent what he thought of the song and specifically if he feels he’s in a prison.
He said he likes it and that yes, sometimes he does feel like he’s in a prison.
Following up, I asked if that was because of the autism or because of how others treat him.
“Both. But your son loves you very much.”
I found it interesting that Brent felt the need to convey the message that our son loves us. I think he must have known I was struggling with the implications of the song, but he is right, Ben loves us deeply. We can see it in the sparkle of his eyes, hear it in his laughter, and feel it in the way he leans into us for hugs. And we are even blessed to hear him say the words, “I love you.” Blessed indeed.
Brent and I chatted a bit longer about different aspects of autism. I asked him about the notion of searching for a cure for autism vs. the idea that there’s nothing to fix so there’s no need for a cure. His response was very profound and something I have truly believed for a very long time.
“Autism makes up who you really are inside. It’s not a disability, it’s a gift actually.”
Amen! It makes up who you really are and it’s actually a gift. And yet, Brent also said if there were a cure, he would take it.
All I can make of this is that when it all comes down to it, all each of us really wants is to be understood and accepted for who we are. Autism is so very complex that no one truly understands it and while awareness is growing, there is still a great need for acceptance.
There are so many blessings that have come to us as a family because of Ben’s autism and it really is so much a part of him that I can’t even begin to imagine him without it. All that said, there are some very difficult days, but that is all part of the experience.
While listening through the song the first half dozen times, I kept thinking this poor man (Johnny Orr) his heart is in the right place, he is trying to do a good thing, helping an organization that helps families of autism, and helping to spread awareness all at the same time, and yet, I know the Momma Bear Syndrome is fierce in this community. People are going to eat him alive because of some of these lyrics. And they have.
Post after post after post on various sites where the song is discussed attacks Mr. Orr for saying things like “My autism is a prison that I’m in.” and “I’ve caused you pain.” These are harsh statements. Ones that I, as a parent, would never want to hear my child say or know he even felt, but that fact is, that may very well be the reality. That is probably one of my greatest fears concerning autism is that our son will someday read or hear something that will make him think he is a burden on his family. That simply is not the case. Period. Autism sometimes makes things a bit more challenging for our family than for our friends, but there is no burden here. Yes, autism is very much a part of our lives and has a great deal to do with who he is, but there is so much more to Ben than just his autism. That is part of our job as his parents to make sure he is aware of all the amazing things that make him who he is as well – a big task indeed, but we are up to the challenge!
Beyond the Blue
Autism Awareness Month is upon us. I’ve seen blue lights along the routes we travel and have been touched by the display of support. I remember seeing some of them last year, but I’ve also noticed some new ones that weren’t there last year. This is progress. To me, each new light shows that there is another household recognizing autism spectrum disorders, understanding and accepting differences, and celebrating the person rather than dwelling on the disorder.
April 2 is World Autism Awareness Day. This year marked the seventh annual WAAD. It was the second awareness day for our family. I remember issuing a challenge to our friends and family last year to wear blue for Ben on April 2, and then being taken back by the number of pictures which had filtered our way via facebook, along with encouraging messages throughout the day. It was then that I wrote, “You just never know how much a simple thing like this (wearing blue on World Autism Awareness Day) will mean to the family who is living on the spectrum. Without saying a word, you have shared the message, ‘You are not alone. You are loved and your child is accepted.’ And that is a precious, priceless message indeed.”
As blown away as we were last year, nothing could have prepared us for the blue we experienced last week for this year’s World Autism Awareness Day. It was a culmination of so many hours, days, weeks, and months of sharing our story. And honestly, it just happened; by no grand plans of mine, it just happened. “Overwhelmed” doesn’t even begin to describe the emotions.
Yes, there were points in the day I was overwhelmed, like when the class of grad students I spoke to last week sent me a picture of their entire class wearing blue for Ben; when a college student in Iowa sent support back home with a picture of her arm where she used a sharpie to draw a puzzle piece and musical notes declaring “I rock the blue4Ben.” complete with hashtags #wearblue and #neveralone; when I see pictures of kiddos my kiddos have never met, proudly wearing blue for Ben. These are the moments my spirit is overwhelmed and my heart leaks out my eyes.
I spent much of the morning with Ben’s kindergarten class and his little sister’s preschool class, visiting with them, talking about autism, and painting puzzle pieces on their hands and faces. As I was leaving the building, a group of second graders stopped me and asked, “What about us?” They were headed to PE and I was headed out to run errands, so I apologized for not painting them up, but chatted with them until it was their time to go into the gym.
Within a couple of hours, I received pictures of the fifth grade class and their chalk board. Their board was covered with puzzle pieces, hearts, and Ben’s name. They used markers (I think) to color puzzle pieces on each other’s hands and faces and to write Ben’s name on themselves. None of these students has a personal connection to Ben in terms of being related, or even close family friends. Sure we see them around, but it’s not like they have ever spent time with him outside of the school or church setting. And yet, here they were, Blue’d out to the hilt. An hour later, I received pictures of fourth graders who had done the same. And the middle school – oh my word, the middle schoolers!! Our sixth grade twins went to school armed with facepaint crayons and decked out in blue from head to toe. Their friends joined them in Rockin’ the Blue for Ben complete with blue tye-dye shirts, blue sparkly headbands, blue tutus, blue fingerless arm gloves, blue fingernails, and even blue legwarmers.
When I picked the kids up after school, I saw student, after student, after student, ranging from preK to 6th grade, with the same support, literally painted across their foreheads, up and down their arms, and on their hands. Each precious face, plastered with a smile for our little guy.
All this got me thinking quite a lot. I hadn’t asked any of these kids to do anything. I know there are other children with autism in our school district, but it was Ben’s name that kids were writing on the board and on their faces and arms and hands. I know some of the other kids’ stories. Some of them were diagnosed early and had a lot of early intervention services. Others were diagnosed well into their adolescence and as such didn’t get help until they were much older. Some families choose to share their story, some choose to keep their experiences private. Neither is right or wrong, it is all a personal choice. Not everyone is comfortable sharing the ins and outs of their journey and that is okay. Just because we are comfortable sharing our story and answering questions doesn’t mean everyone is and that absolutely has to be okay. No one can pass judgement here. This autism thing, it’s not an easy walk to take, but every step of progress is so worth the effort.
That night, our oldest daughter’s volleyball team played their season opener in Galesburg. I was so struck by the support in the middle school that I spent some time tye-dying socks for the 20-member team to wear that night. It was just a very small way for us to say thank you for their support that day and to give them a little something to unite their team as they were the only ones whose uniforms had not come in yet. So they Rocked the Blue for Ben & rocked their opener, too, bringing home a win in their stylish blue tye-dye socks and blue hair ribbons. And I’ve since learned, they decided on their own to wear those silly blue socks every game this month, Rockin’ the Blue for Ben all of April. Those girls have caused my heart to leak out my eyes again.
Reflecting over the day, I found myself wondering how other parents of children with autism felt when they saw the kids with Ben’s name on them. I wondered if they would wonder “Why Ben?” and “Why not the other kids? Why not my child?”
I think the masses gravitate toward Ben for a couple of reasons. First, he simply has a magnetic personality. His laugh is absolutely contagious and if you’re lucky enough to make it into his inner-circle to be on the receiving end of one of his hugs, you’ll never forget it. But I also think it’s partly because of how we have handled Ben’s autism as a family. We haven’t hidden from the difficult moments. We’ve embraced the amazing little boy that Ben is, rather than demonizing the disorder with which he lives. Because we’ve been open and honest and try to advocate for him and for others like him, we’ve allowed the community to become his and allowed him to become theirs. He’s our son, but he’s their boy. He’s your boy. And you, you love him deeply.
I was asked by one of the grad students after a presentation last month what, if anything, we do as a family to celebrate World Autism Awareness Day. At that point, less than a week prior to WAAD, we didn’t have any plans other than to wear blue for our boy. To us, it’s not about a day, or even a month. (April is autism awareness month.) It’s not even about wearing blue, or any other particular color. For us, it’s a lifestyle. Autism Awareness Day is every day in our lives. We live it. We wake up with it. We go to sleep with it. We live it every moment in between. Some moments are wild with laughter and joy so profound, not a dry eye can be found. Other moments are so difficult, so loud, so heartbreaking, not a dry eye can be found. But in the midst of all those moments, there’s a whole lot of life happening. Life doesn’t have to be perfect to be wonderful, it just has to be lived. That’s what we did on Autism Awareness Day; that’s what we’ll do all of Autism Awareness Month; and that’s what we’ll continue to do every day we are blessed to share with our guy. And, if the last two years are any indication, we’ll be making a lot of friends along the way who will join us in taking this awareness thing beyond the blue, all the way to acceptance and celebration.
What Are You Looking For?
What you see depends mainly on what you look for. – John Lubbock
The Centers for Disease Control and Prevention (CDC) released new prevalence rates for autism last week. It is now estimated that 1 in 68 children are identified with autism spectrum disorders; 1 in 42 boys, almost five times more common than girls. This is roughly a 30 percent increase over previous estimates reported in 2012. These statistics come from a 2010 study done across multiple communities throughout the United States, looking at children age 8.
Taken at face value, these statistics can be quite alarming. However, a look deeper into the study shows that in addition to a higher percentage of children being affected by autism, almost half of the children studied have an average or above average intellectual ability (an IQ above 85) as compared to one third of children a decade ago. This tells me that even though autism is more common than ever, that we are doing a better job of helping those kids overcome the once overpowering limitations autism imposes. As the parent of a child with autism, I find this extremely encouraging.
While it’s true that some people with autism are impacted in such a way that they cannot verbally communicate and some struggle with impulse control, wandering, and sleeplessness, that is not the case for all people with autism. It truly is a spectrum of disorders, affecting each individual differently. And even for those who can’t physically speak, that doesn’t mean they don’t have anything to say or that they cannot communicate. Some of the most profound pieces I have read about autism and living with the disorder have been written by non-verbal people living with the condition. Therapy, communication and understanding have helped countless individuals deal with impulse control and find other ways to deal with the overwhelming stimulus of the world around them. Educating parents and caregivers to know and understand why a person with autism has a tendency to wander has helped keep the wanderers safe and close.
According to a press release from the CDC (which can be seen at http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html) the report also shows most children with autism spectrum disorders (ASD) are diagnosed after age 4, even though ASD can be diagnosed as early as age 2. Healthy People 2020, the nation’s 10-year health objective, strives to increase the proportion of young children with an ASD and other developmental delays who are screened, evaluated, and enrolled in early intervention services in a timely manner.
Early intervention is absolutely key in helping a child with autism not only cope with the disorder, but to thrive despite it. Yes, I said thrive. Our son has autism. He was also diagnosed with a gross motor delay, and expressive/receptive language disorder, but he will outrun me nearly every time we go out. While he has some difficulties with conversation, he has overcome a great deal of the limitations which once made communication nearly impossible. In fact, just a couple of weeks ago, his sister helped him call me when she couldn’t get him to get off the bus once they had gotten to school. The conversation went like this
Me: Hi, Ben. What’s the matter?
Ben: Hi, Mommy. I don’t no want to go to school today.
Me: Oh. You know what, Buddy? I don’t really want to go to work today, either. So, how about you do what you need to do and I’ll do what I need to do, and then I’ll come pick you up when we’re both done, and we can go home together after school?
Ben: (sigh) Okay.
Me: I love you, Benton.
Ben: I love you, too, Mom. Bye.
This, from a boy who couldn’t carry on a conversation two years ago, much less on the telephone, without being able to see me! He told me what was wrong. He didn’t get what he wanted, but he understood this is the way it was going to be, and he accepted it. This is huge.
So, while I agree that yes, I had to catch my breath when I first heard of the increased diagnosis rate of autism, I realize that this is not the end of the world. I think that as we research more and learn more and know more about the vastly different ways autism can affect people, and we, as parents, are more aware of what to look for and have our children screened earlier and more often, professionals are having an easier time of identifying autism earlier. The earlier a concern is addressed, the more likely it can be overcome.
If your child is not meeting developmental milestones such as taking a first step, smiling for the first time, making eye contact, responding to his name, or waving “bye-bye”, or if you’re just not sure, check with your pediatrician. If you are still concerned, contact your early intervention agency (birth-3) or your local school district for screening. Help is out there. You are not alone.
Autism can be looked at as a big, ugly monster that steals our children and their ability to communicate and thrive. But, not if we don’t let it.
I choose to look at autism as that part of my son which makes him uniquely him. It has given him the ability to recall moments from years ago in the greatest detail that I feel like I am back in that moment as he replays it for me. He can sing a song, word for word, after only hearing it a few times. He can artistically recreate nearly any logo he sees with such great accuracy, he includes details so small, we have to go back to look at the original because we missed them. Because of his fascination with recreating pictures, logos and words, to the degree that he can draw nearly any font he lays eye on, and because he has spent literally hours of his life happily drawing, he has the neatest handwriting in our entire family, at the age of 6.
And his memory is absolutely amazing. I sing a song to our youngest at bedtime each night. It’s our thing. She asks for the song I sang her as a baby and I comply. Ben hears this each night, but doesn’t ask for it and often doesn’t want it, so I don’t get those moments with him any longer.
One night last week, he asked for the good night song. I soaked in every moment of bonding with our boy while I sang this old song to him. When I was done, my heart so full that he asked for that time with me, he looked at me and said, “No, Mommy, the time to sleep song.”
I was stumped! This is the song I had sung to all five of our children every night as I rocked them to sleep. Trust me, I know this song! This is the good night song. So, I asked him if he could sing it.
“Ok.” He sat up in bed, steadied himself, and began to serenade me with a song that played at the end of each video lesson we did with our preschool group at church when he was three. He sang me the entire song, never missing a beat, never missing a single word from a song that we had not heard for nearly three years. And my heart was so full, it leaked out my eyes.
Yes, autism can be scary, but it brings some amazing blessings into our lives. This is what I choose to look for.
thespectrumscene 