Tuesday, June 29, 2010
On a scale of one to ten, how high is your stress level? If it is on the high side, how do you think your stress affects your children? It might be more than you think.
A late-2009 study reported that autism moms have stress levels similar to combat soldiers. A 2008 study that showed that 39% of mothers parenting children with challenging behavior are stressed at the clinically significant level, and that this stress negatively impacts a child's outcome.
I know that my stress affects my kids. If I had to casually rate my stress, I'd probably put it at a four on good days and a nine on bad days. I'm a lot more patient and engaged with my kids on the "four" days. On the "nine" days, I am more likely to snap at them—and my husband. I am more inclined to let them watch television or play video games instead of engaging with them, playing and teaching.
This maternal stress, while present for all mother figures, can be even worse for parents of children with special needs. The constant needs, the never knowing when something is going to go terribly wrong for or with one of our children, and the intense isolation brought on by special needs parenting can combine to create a pressure cooker situation for autism moms that hurts everyone in the family.
Rondalyn Whitney, a research coordinator for the Kennedy Krieger Institute in Baltimore, is studying this very thing and has some strong opinions on how badly moms of kids with special needs have to take care of themselves. She has embarked on a doctoral study about maternal stress and how journaling can help to combat it.
"My real area of passion is family quality of life," she says. "I had to get the word out that families were in pain. Families knew it. Researchers didn't."
She is particularly concerned about caregivers who take on the "mother role," regardless of gender (examples of non-mothers taking on this role include gay men, grandparents, and some fathers). "Supporting the mother is a protective factor for the whole family," she reports. "Not supporting the mother is a risk factor."
A 51-year-old mother of a child with non-verbal learning disorder (NLD) herself, Whitney says that after taking a written stress test, she discovered that she was at the critical range and had to take concrete steps to remedy the situation.
Most parents of children with autism are aware of this stress and isolation, but we don't know how to combat it, or we put our children's mental health ahead of our own. It is easy to identify the problem, but so much harder to find a solution.
Whitney stresses the need for what she calls "casserole friends," friends who will be there for us even when it is difficult for them, friends who will just show up with a casserole to make your day better. A casserole friend will invite you over and tell you that her house is "meltdown friendly." A casserole friend will go out of her way to ease your stress without asking for anything in return.
Twenty years ago people averaged four good friends. Social isolation studies today tell us that 50% of us don't even have one. "This is happening across all groups," Whitney says, "but it overly impacts those of us who are parents of kids with special needs because we're already isolated."
"Community is very important," she says. "Social isolation is a phenomenon that is breaking us down. Being involved in something [for yourself as a mother and a person] is important. I'd like moms to build a community. We've done it for the autism community, for the NLD community, but we haven't done it for ourselves," she observes. We handle our children and their needs but we don't take care of ourselves.
There is a common saying: "If mama ain't happy, ain't nobody happy." Whitney holds this to be true, calling mothers the "pivot point" of the family. Fathers tend to be out of the house more and often have a community outside the home. Mothers are less likely to have this support. Furthermore, mothers are likely to incorporate their children in their day to day activities whereas fathers are more likely to play in different, more focused ways. It is this immersion in their children's lives that increases maternal stress.
Furthermore, the myth of the perfect mother haunts many moms. "We all as mothers have this ideal. Anything that doesn't meet up to this, we tend to hide it. If we feed our kids Frosted Flakes every day for dinner, we don't tell anyone," Whitney says, adding, "As I've talked to mothers, I've found there is no perfect mother. We're all feeding them Fruit Loops."
"Don't compare your internal world to others' external faces," she suggests.
Whitney suggests taking short mindful moments throughout the day to combat stress. Take two minutes to engage in self-pity. Take two minutes to laugh at nothing. Take two minutes to get some wiggles out. Take two minutes to get some silence. Whitney herself puts small chocolates in a Ziploc bag with the label "Rx" on the outside to give herself a chuckle and to take some time for herself.
Get some exercise, get moving, insist on support from your child's interventionists, and take some time to write are all ways Whitney suggests to reduce your stress levels.
She is currently engaged in a research study to show that writing helps reduce maternal stress. "Disclosure about emotional information, positive or negative, decreases stress and increases things like immunocompetency," she says. "It's important to have a place to say all the bad things you're thinking."
So many mothers put themselves at the very end of their list of things to take care of. Everyone and every thing comes first. This selflessness isn't good for the family. "We're not complaining. We're willing to do it. But it's a lot," Whitney says. Moms who aren't stressed are better moms, she continues. We intuitively know this, "but haven't given ourselves permission to know it know it—to demand it."
Whitney is seeking participants for her study on Journal Writing for Mothers. This all-online study is open to any mothers of children with autism spectrum disorders who live at home. The study requires you to take an online stress test before and at the conclusion of your participation in the study. The study itself asks you to complete eight online journal writing exercises over a course of eight weeks.
You can find information on her study (link opens PDF file) and find instructions on how to sign up to participate by entering the search term "Journal Writing for Mothers" at the IAN Project website. To contact Whitney and her research assistants directly, email JournalWritingForMothers@gmail.com.
Originally posted at Autism Unexpected.
Sunday, June 27, 2010
Sunday, June 20, 2010
Bonnie Arnwine, the founder of National Autism Resources, is the mother of a high schooler with autism and the author of Starting Sensory Integration Therapy: Fun Activities That Won't Destroy Your Home or Classroom. She started National Autism Resources in 2008 to provide easy to understand information, helpful links, and affordable books, games, toys and therapy products for people on the spectrum.
The blog is a fun mix of information for teachers who educate kids with autism, parents, and spotlights on various autism blogs. I especially liked the posts aimed at teachers. They offer a lot of information on how educators can better help autistic kids in mainstream classrooms. It's pretty new, having started only late last year, but there is already some great information there.
The National Autism Resources store is a wonderful resource for information and products. I love the way the products are categorized under umbrella headings such as "Autism Toys & Games," "Surviving Sitting in the Classroom," "Autism Puberty and Adolesence," and so on. It makes it easy to find exactly what you need without having to search all over.
Furthermore, each product category has some information about the therapies or philosophy behind the idea. For instance, the "ABA Therapy and Autism" store section has information about Applied Behavioral Analysis, followed by the products available at the store. It's all very informative and easy to navigate.
National Autism Resources sent me a super squishy dinosaur to try out with Jack. This dinosaur is a fun little fidget that is especially neat because it is filled with little beads inside its rubber shell.
I gave it to Jack to fidget with while he did his homework. He doesn't have a great history with fidgets, because they tend to be too distracting for him. He did all right with this one though. Although he did try to rip one of its legs off. (And nearly succeeded, by the way. If your kid is a destroyer, it might be worth keeping an eye on him while he plays with this toy.)
The dinosaur is currently living on our back porch, where he adventures in our sand table.
National Autism Resources is definitely worth checking out and is absolutely worth sending teachers to see, specifically the "Children with Autism in the Classroom" section. It's a great place to go if you are looking for information and products.
Disclosure: National Autism Resources sent me a Super Squishy Dinosaur to try out and review. This review is cross-posted at my review site, Things. And Stuff.