Monday, April 14th, 2014
As part of Autism Awareness Month, Parents and Easter Seals teamed up to bring our Facebook fans expert answers to their biggest questions about autism spectrum disorders during our Facebook chat. Dr. Patricia Wright, a board certified behavior analyst and Easter Seals’ National Director of Autism Services, and 2014 Parents Social Media Award Winner Autism Daddy, a 44-year-old blogger and dad to a 10-year-old son with severe/classic autism, shared their expert opinions on all things autism.
Note: Some responses have been edited for clarity.
“What do you wish more people knew about autism spectrum disorders?”
Dr. Wright: I wish that all parents knew how important it is for EVERY child to be screened for autism and other developmental disabilities as recommended by the American Academy of Pediatric Guidelines. For autism, that is at 18 months and again at 24 or 30 months. For society as a whole, I wish that people could meet the many adults living with autism who are happy, contributing members of society. I think this would leave to greater acceptance of people living with autism and increase the opportunities for children and adults with autism to have greater success in life.
“What are your thoughts on the rising numbers in children with autism? What do YOU believe is a factor?”
Dr. Wright: “There is certainly lots of discussion about the rising prevalence. I have focused my career on supporting people who have already been diagnosed. I do look to the Centers for Disease Control and Prevention for information and there is some great research being done at places like UC Davis that are trying to answer this important question.”
“My son was diagnosed with an autism spectrum disorder at 22 months. He is now 25 months and with the help of speech and Applied Behavioral Analysis therapies, he went from completely nonverbal to speaking more than 40 words appropriately (as well as better eye contact and interaction). I’ve heard of, ‘falling off the spectrum.’ Have you seen this happen? Is it really possible?”
Dr. Wright: “The most recent data reports that approximately 13-17 percent of children who are accurately diagnosed with autism lose their diagnosis.”
“Is there a guide of the actual spectrum, from severe to non-severe?”
Dr. Wright: “Autism is diagnosed via observation and interview. Autism diagnostics are typically conducted by a team of professionals which might include a physician, psychologist, speech-language pathologist, occupational therapist, and others as appropriate. There are two ‘gold-standard’ tools: the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). These are the best tools we have. The ADOS is an activity based assessment that involves interaction between the parent and the assessor. The ADI is an interview conducted with the parent. It is important to have professionals engaged in the assessment that are trained in autism diagnosis and using good assessment tools like the ADOS and ADI-R. A diagnosis is often a multi-step process and based upon the unique needs of the child there may be other assessments that need to be conducted such as a hearing test, genetic testing and others. Your healthcare provider should lead you through the diagnostic process.”
“Different doctors tell us different things about where our son is on the spectrum. I’ve been told he can’t be because he speaks and is too social. He has a very low IQ. So is he what some would say high functioning?”
Dr. Wright: “Speaking and being social aren’t necessarily rule-outs for an autism diagnosis. An autism diagnosis is conducted through behavioral observation of the child and interview with parents. Autism diagnostics are typically conducted by a team of professionals which might include a physician, psychologist, speech-language pathologist, occupational therapist, and others as appropriate. There are two ‘gold-standard’ tools the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). These are the best tools we have. The ADOS is an activity based assessment that involves interaction between the parent and the assessor. The ADI is an interview conducted with the parent. It is important to have professionals engaged in the assessment that are trained in autism diagnosis and using good assessment tools like the ADOS and ADI-R. A diagnosis is often a multi-step process and based upon the unique needs of the child there may be other assessments that need to be conducted such as a hearing test, genetic testing and others. Your healthcare provider should lead you through the diagnostic process.”
“What has been the most helpful resource for you as a parent of a child with autism?”
Autism Daddy: “Facebook! Seriously when my son first was diagnosed, it was pre-Facebook and I went to a few support group meetings in person. The parents were all at different parts of their autism journey, and most were higher functioning than my son. I found the support group meetings frustrating and uninformative. The great thing about Facebook is that you can find the specific support group that fits your needs. Low-functioning, Aspie’s, non-verbal, autism and epilepsy, etc.”
“What do you wish more people knew about what it’s like to raise a child with autism?”
Autism Daddy: “That it can be very hard, exhausting, and isolating. That’s not easy to hear, I know, but it’s the truth. Though the autism parents you know may be putting on a brave face and saying they’re fine and don’t need help, offer to help them anyway. And all you autism parents out there: stop acting so damn strong. I don’t want pity as much as the next guy, but there’s no shame in saying you are overwhelmed and need help.”
“What do you find is the most effective way to encourage your child to communicate with you—and others?”
Autism Daddy: “My son is a tough customer when it comes to communicating, but the iPad is starting to work its magic. He’s able to navigate the iPad like a champ, which is great since he doesn’t have fine motor skills. He likes a lot of the toddler apps like Monkey Preschool Lunchbox and Elmo’s Numbers & Letters.”
“My 3 ½-year-old daughter was evaluated a few months ago. They told me she’s not autistic, yet she’s on the spectrum scale. She tells me what she needs and wants, knows how to count to 20, is familiar with her colors, etc. How do I explain or make people aware when they wonder why she doesn’t talk as well as other kids her age?”
Autism Daddy: “Don’t get bogged down in the labels. Maybe she’s autistic, maybe she’s not. The key is that she’s young, and she needs a little extra help. When people ask, just say she’s a bit speech delayed. If the experts tell you she’s on the spectrum, don’t freak out. Use that diagnosis to get extra services like speech and occupational therapy.”
“Do they always flap their hands and walk on their tiptoes? Can they be on the lower end of the spectrum if they don’t do this but have other signs?”
Autism Daddy: Flapping and toe walking are just a few of the “stims” that a lot of kids with autism do, but not all. Just because they do or don’t doesn’t indicate their severity.”
Dr. Wright: “Autism is a spectrum disorder, so every child presents symptoms in their own unique way. Not every child with autism has toe-walking or hand-flapping and these behaviors in isolation would not indicate a severity level.”
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Wednesday, April 9th, 2014
Our columnist Nicole Zeman, a mom of two in Portland, Oregon, answers your pressing questions in her new Parents magazine advice column, ”If You Ask Me…”. Send Nicole your questions at email@example.com.
Q: I’m 5 months pregnant and my husband won’t have sex with me. He says it’s weird for him and he feels uncomfortable because of the baby, but once in a while would be nice and would help me feel better about myself. Is this normal? —Abandoned on My Side of the Bed
Sexually confused husbands are one of the unfortunate but common side effects of pregnancy, like acid reflux or peeing every time you sneeze. Your husband is having trouble separating your body from the baby growing inside it, which makes viewing you as a sex object feel… wrong.
But forget him for a second. Whether you’re getting action doesn’t have to dictate how you feel about yourself. As a dad friend of mine says, growing a baby is a superpower. Reveling in that will up your confidence and sexy aura, as will wearing slinky fabrics that glide over your skin, splurging on bath products that smell delectable, and indulging in shamelessly romantic books and movies. Your husband may remain an admiring bystander as you explore and enjoy your pregnant sexuality, or he may quickly get over all that reverential crap and realize what he’s missing out on.
P.S. Don’t settle for a flesh-tone, elastic sack of a maternity bra! Step it up with flattering cuts, sexy lace, and lovely colors.
What’s your parenting style? Take our quiz to find out!
Image: The Pregnant Woman Becomes Angry About The Husband Who Lies On A Bed And Watches Tv via Shutterstock
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Wednesday, March 26th, 2014
Each month in Parents, we print the 27 truest words about parenting from our favorite bloggers. Our April issue features a quote from Julie Miner at Rants from Mommyland. Read her full blog post below.
I’ve found that making friends as an adult is not as easy as it was when I was a kid. Kid is defined as “in school of some kind” – so that includes college. Actually, I recall that making friends in college was easy-peasy. I would meet someone while moving into a dorm and we would be best friends 48 hours later. The excessive beer drinking could also have been a factor. Possibly.
In my twenties, I was married and my only kids were feline and canine. Making new friends in a new city wasn’t easy. I had work friends. I had buddies from the neighborhood. I had friends from the dog park. But it took a couple of years before any of them became my real friends. And then, as soon I had them and loved them, it was time to move again. Shizzle. That still gives me the red ass and it was nine years ago.
Everyone says that once you have kids it gets a lot easier to make friends. Then again, everyone also said you lose tons of weight while breastfeeding. But the size of my enormous ass discounts the veracity of that little tidbit of maternal wisdom. Another myth shot to hell, thank you very much.
The whole making friends with kids thing though, is partially true. When the kids are older. When they’re little babies, especially with your first baby, it can be incredibly isolating and lonely. Because it’s all about meeting their basic, primal needs all the time so that they will not perish and the world will not implode. And that just doesn’t leave a lot of time for other things. Like sleeping or basic hygiene or attempts to reclaim your sanity.
When I had my first baby, I had no family living nearby and only a handful or neighbors and acquaintances, who while truly lovely people, were not what I needed. Mostly because at the time, I didn’t know what that was. It turns out what I needed was a mommy friend who would tell me: “You are a total psycho but that’s normal. Now let’s go to Barnes and Noble and get lattes and pretend we still know how to read.”
Though that’s not entirely fair because at the time I could still read (unlike now). As long as it was Good Night Moon or Us Weekly.
In 2003, what I needed was a Kate. I had a wonderful husband who thankfully, was really supportive and just as overwhelmed by and crazy about becoming a parent as I was. But he was at work all day. And he was f*cking asleep all night. And he was (and remains) a dude.
So for the first year, I spent a lot of time on the phone with friends from far away. And watching TV. And being alternately resentful and snarly and then guilty and weepy and failure-y that the whole thing wasn’t easier. I kept asking myself if it was supposed to be this hard?
Yes. I know, Kate. That’s what she said.
Then somehow, when I least expected it and most needed it, a miracle happened. I ended up in a playgroup. It was five first time mommies and five almost-one-year-old little girls. The girls enjoyed playing together, but it wasn’t really about them. It was about us. Woot! Finally… Because all of us were loving being mommies but kept wondering what the hell happened to us. And when we figured out we weren’t alone in the confusion and chaos, it became infinitely more easy to deal with.
I could say things to them that no one else understood. Like the fact that I was watching so many Wiggles DVD’s that I actually had a sex dream about the blue one. Or that the lack of sleep was turning me into angry old witch who was a total B to her husband all the time. That going to the Starbucks drive-thru was the most exciting part of my day and I was fully aware that that made me totally pathetic. That every time I heard Dora the Explorer’s voice it was like someone flipped a Manchurian Candidate kill switch in my head and I just wanted to smash things and set fires.
And instead of being like: “That’s frightening and off-putting. You should consider spending the weekend wearing a huggy jacket in a nice bouncy room.” They were like, “The Blue Wiggle. Yeah. Let’s google him.”
And there was no weirdness or drama or competitiveness. Just support and kindness and booby jokes. It was great. And I had no idea just how unique our situation was, how special each of them were. And that I will never be able to duplicate what we had for that year. Because once I had made these amazing friends, who were supportive and understanding and funny… We moved again.
Awesome. Thank you, fates that guide my husband’s career.
But even though it was awful to leave, it really was OK. Only one of the five mommies is still there (military town – though we are not military - enough said). And we got each other through the worst of it, those first two years of mommyhood. Because once your kiddos get older, you get out of the house a lot more. You start to have a life again, even if it’s nothing like the life you used to have. The one where you were cool or badass or had a single second of autonomy. Sometimes it’s actually even better.
You start preschool or soccer and you’re thrown into the paths of other moms and families. Which is a whole other post (for later this week). Because whether you like it or not, you’re going to be seeing a lot of those mommies. Some of them might make you want to square up and kick them in the taco. But most of them will be nice. And possibly they may end up being your best buds or maybe even a Kate. And that’s huge.
Sigh… I know. That’s what she said.
Has your family moved recently? Use our daycare checklist to find the right place for your little one and shop kids’ bedroom furniture.
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Tuesday, March 25th, 2014
Our columnist Nicole Zeman, a mom of two in Portland, Oregon, answers your pressing questions in her new Parents magazine advice column, ”If You Ask Me…”. Send Nicole your questions at firstname.lastname@example.org. We’ll be periodically posting some of the questions she answers in this space, and here is the first:
Q: A new mom friend of mine wants to trade off babysitting for our 2-year-old daughters. Only problem is that her house is unsafe in a few key ways. She has covers on outlets, but there are no baby gates on the stairs and sharpened colored pencils that belong to her older kid are stored in baskets on the floor. I’m not sure if my friend thinks of these things as hazards. Do I confess my concerns or just make up an excuse?
-Doing the Safety Dance
A: Dear Dance,
The golden rule is that your child’s safety is priority number one, and other people’s feelings be damned. That said, coming right out with a list of ways that her house isn’t safe is equal to calling her a bad parent, which is sure to put your fuzzy new friendship on ice. Also consider that anyone can be guilty of a safety blind spot and every kid is different.
Your ideal move is to get your message across without sounding judgmental. Do that by couching your concern in terms of your own tot’s limits. Let your friend know that you’d love to leave your daughter over at her house but are worried because she isn’t yet able to navigate stairs and can’t be counted on to handle pointy art supplies without putting an eye out. Throwing in a compliment about how advanced your friend’s daughter is in those ways will candy-coat your comment even more. If your new friend is sensitive and accommodating, she will offer to put up baby gates at her place (volunteer some if necessary), store sharp objects on a high shelf, and be extra attentive every minute that your toddler is in her care.
You could also hit the park and ask her to keep an eye on your little one while you ‘make a phone call.’ If she isn’t as vigilant as you would be, then, yeah, make up an excuse—all the babyproofing in the world won’t stop a toddler from getting into trouble if no one is watching.
P.S. To find your safety blind spots, ask mom friends to look for anything you missed. I did and was horrified to discover we hadn’t put anti-tip brackets on the bookcases that our toddler was always trying to climb.
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Wednesday, March 12th, 2014
Glennon Doyle Melton is the author of Momastery and the Best All Around winner of the 2014 Social Media Awards. Since 2009, Melton has been sharing her sentimental and silly moments as a stay-at-home-mom who doesn’t always get it right. Melton is also the author of Carry On, Warrior a New York Times best selling memoir about her recovery from drugs and alcohol and experiences in marriage and parenthood.
A few weeks ago, I went into Chase’s class for tutoring.
I’d emailed Chase’s teacher one evening and said, “Chase keeps telling me that this stuff you’re sending home is math – but I’m not sure I believe him. Help, please.” She emailed right back and said, “No problem! I can tutor Chase after school anytime.” And I said, “No, not him. Me. He gets it. Help me.” And that’s how I ended up standing at a chalkboard in an empty fifth grade classroom staring at rows of shapes that Chase’s teacher kept referring to as “numbers.”
I stood a little shakily at the chalkboard while Chase’s teacher sat behind me, perched on her desk, using a soothing voice to try to help me understand the new way we teach long division. Luckily for me, I didn’t have to unlearn much because I never really understood the old way we taught long division. It took me a solid hour to complete one problem, but l could tell that Chase’s teacher liked me anyway. She used to work with NASA, so obviously we have a whole lot in common.
Afterwards, we sat for a few minutes and talked about teaching children and what a sacred trust and responsibility it is. We agreed that subjects like math and reading are the least important things that are learned in a classroom. We talked about shaping little hearts to become contributors to a larger community and we discussed our mutual dream that those communities might be made up of individuals who are kind and brave above all. And then she told me this.
Every Friday afternoon Chase’s teacher asks her students to take out a piece of paper and write down the names of four children with whom they’d like to sit the following week. The children know that these requests may or may not be honored. She also asks the students to nominate one student whom they believe has been an exceptional classroom citizen that week. All ballots are privately submitted to her.
And every single Friday afternoon, after the students go home, Chase’s teacher takes out those slips of paper, places them in front of her and studies them. She looks for patterns. Who is not getting requested by anyone else? Who doesn’t even know who to request? Who never gets noticed enough to be nominated? Who had a million friends last week and none this week?
You see, Chase’s teacher is not looking for a new seating chart or exceptional citizens. Chase’s teacher is looking for lonely children. She’s looking for children who are struggling to connect with other children. She’s identifying the little ones who are falling through the cracks of the class’s social life. She is discovering whose gifts are going unnoticed by their peers. And she’s pinning down right away who’s being bullied and who is doing the bullying.
As a teacher, parent, and lover of all children, I think that this is the most brilliant Love Ninja strategy I have ever encountered. It’s like taking an X-ray of a classroom to see beneath the surface of things and into the hearts of students. It is like mining for gold (the gold being those little ones who need a little help) who need adults to step in and teach them how to make friends, how to ask others to play, how to join a group, or how to share their gifts with others. And it’s a bully deterrent because every teacher knows that bullying usually happens outside of her eye shot and that kids being bullied are often too intimidated to share. But as she said, the truth comes out on those safe, private, little sheets of paper.
As Chase’s teacher explained this simple, ingenious idea – I stared at her with my mouth hanging open. “How long have you been using this system?” I said. “Ever since Columbine,” she said. “Every single Friday afternoon since Columbine.” Good Lord.
This brilliant woman watched Columbine knowing that all violence begins with disconnection. All outward violence begins as inner loneliness. She watched that tragedy knowing that children who aren’t being noticed will eventually resort to being noticed by any means necessary. And so she decided to start fighting violence early and often, and with the world within her reach. What Chase’s teacher is doing when she sits in her empty classroom studying those lists written with shaky 11-year-old hands is saving lives. I am convinced of it. She is saving lives.
And what this mathematician has learned while using this system is something she really already knew. That everything, even love, even belonging, has a pattern to it. And she finds those patterns through those lists. She breaks the codes of disconnection. And then she gets lonely kids the help they need. It’s math to her. It’s math. All is love, even math. Amazing.
Chase’s teacher retires this year after decades of saving lives. What a way to spend a life: looking for patterns of love and loneliness. Stepping in every single day and altering the trajectory of our world.
Teach on, Warriors. You are the first responders, the front line, the disconnection detectives, and the best and only hope we’ve got for a better world. What you do in those classrooms when no one is watching, it’s our best hope.
Teachers, you’ve got a million parents behind you whispering together, “We don’t care about the damn standardized tests. We only care that you teach our children to be brave and kind. And we thank you, we thank you for saving lives.”
Love – All of Us
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