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#SensoryIsReal A Manifesto and Movement

sensoryisreal

 

#SensoryIsReal

Sensory processing disorder is a real disorder. Research shows differences in the brains of children with sensory processing disorder versus the brains of children with typical processing of sensory information. Let’s end the misunderstandings and the stigma. Read the manifesto and watch the video, use the hashtag #SensoryIsReal, and join the movement!

 

(And don’t forget to visit www.SensorySmartParent.com to sign up for the newsletter and see new blog posts.)

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Sensory Smart Parent Relaunched!

I’m excited to announce that Sensory Smart Parent has relaunched at www.SensorySmartParent.com  Come visit the new site and check out the new blog. Want to get new blog pieces, announcements, tips, and other sensory smart news in your in box? Head on over to www.SensorySmartParent.com and sign up today!

 

CarlaGirlJoyous

Joy! http://www.SensorySmartParent.com has been relaunched. If you want to receive sensory smart news that includes articles, blog pieces, announcements, practical tips, and more, head over to the new site and sign up!

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Nature is great for sensory kids

Nature is great for sensory kids

Even just a 5-minute walk outside or a short visit to a lake can lower the level of your stress hormones. Be sure to get outside with your sensory child! Being in nature can be a HUGE part of a sensory diet.

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June 30, 2012 · 2:06 pm

A Response to Skeptics About Autism, Sensory Processing Disorder, and ADHD

Recently, a person with a PhD in the humanities, who is chair of a department at a prestigious private university, said to me, “You’re wasting your time talking to people online about autism. Autism doesn’t exist outside of the United States. The rising number of cases is just another example of mass hysteria, people convincing themselves that there’s a problem and the pharmaceutical companies taking advantage of them. We always had people with autism and they got jobs. The only issue is that now you need a college degree to get a job so parents are pushing schools to give their kids more help when it’s their responsibility to do the extra work their kids need.”

I was incredulous and went into my logical brain. I tried to convince her that perhaps my ten years of reading the news and research on sensory issues, ADHD, and autism, and listening to parents of children with autism and related conditions talk about their struggles, might give SOME weight to my opinion and take me out of the category of “hysterical” parents. Later, I asked some people in the hidden disabilities community if they thought I should educate her by sending her some links. The consensus was not to bother, because anyone with such an extreme position and unwillingness to admit that she was not the expert of all time as a result of having met one or two college students with Asperger’s wasn’t worth the effort when there are so many people eager for and appreciative of guidance and support. A close friend said to me I shouldn’t feel insulted so much as sorry for this person, who clearly couldn’t appreciate my passion for educating and inspiring other parents and the professionals who work with their kids. I don’t know if it was actually Eleanor Roosevelt who said this, but I’ve always loved the quote, “No one can make you feel inferior without your consent”! (At one point, I asked, “So you think my work is stupid and pathetic?” She did not contradict me but continued her diatribe. To my credit, I did laugh at the audacity of her non-response!)

“Do you even get paid for the work you’re doing?” the PhD asked me.

My gut dropped. I had, after all, just lost two freelance jobs worth five months’ income in the last week and had been “singing a happy tune” to try to prevent panic for days.

“No,” I answered. “Well, I make enough money selling Amazon.com items through my website to pay my hosting fees. And I earn about 48 cents for each copy of my book sold. But sending out my newsletter, advising people online—no, I don’t get compensated for any of that.”

The PhD’s eyeballs rolled. “Your son doesn’t even have autism.”

“Yeah, but his issues overlap autism, and SO many kids with SPD also have autism! I want to better understand the special challenges of kids with other hidden disabilities so I’m more sensitive when I advise parents. And besides, isn’t there some value in giving back when you have so much information and insight that can help others?”

The PhD had no answer for that. I suppose information and insight about something that doesn’t exist except in the minds of neurotic U.S. parents doesn’t have much value!!!!!!

It’s funny—so often, parents of neurotypical kids try to one up each other, comparing whose child meet their developmental goalposts first, whose child is more extroverted (so highly valued in our culture), or who said something so intelligent that surely he’s a shoo in for an Ivy League school. Maybe that’s why someone who doesn’t know us parents of kids with hidden disabilities thinks we’re all obsessing over college. In ten years of being in online support groups for parents of kids with sensory processing disorder, I’ve never experienced a parent trying to one up another. Ever. Nor have I ever experienced it with parents in my community who have kids with hidden disabilities. Now, we do congratulate each other when someone’s child consents to a dental procedure with Novocain for the first time, or ties his shoes by himself at age nine, or goes an entire day without wetting the Pull-Up even though he’s eight—because we know how much effort went into achieving that milestone. And maybe we can’t find the time to play the “one up” game because we’re too busy trying to get that homework assignment to travel from the homework folder to the teacher’s desk without showing up at school to make that happen, ensuring that our child will get credit, a grade that isn’t a demoralizing F, and feedback we can use to help her work on her language disability that keeps tripping her up.

I feel I lucked out by getting connected to parents for whom parenting isn’t a competition so much as a collaboration—between Mom, Dad, grandparents and other caregivers, teachers, therapists, other parents who can share their wisdom, and of course, our wonderful kids. We cheer each other on and help each other out. I’ve seen parents join support groups desperate for answers and for someone to say, “I’ve been there. You’re doing great!” only to pass forward that message to another newbie when they’ve found their “sea legs” as a parent of a child with a hidden disability.

I could post here a bunch of links showing that autism is on the rise in many countries, that many experts debunk the idea that diagnostic changes alone are responsible for those rises. I could also post links to research articles and news pieces about breakthroughs in understanding and treating sensory issues and autism, which many of you know I post on the Facebook page for the book Raising a Sensory Smart Child whenever I come across them. I love to participate in conversations about how we can best help our kids shine in a world where “quirky” doesn’t always fit in so neatly, and how we can keep our spirits up when we’re feeling misunderstood, frustrated, or worn out. At the same time, I have to balance that with enjoying my own family, helping my son get the extra help he needs, running my business, and being good to myself. So I’ll let the skeptics check out the book’s Facebook page, use a search engine, and do their own work to convince themselves that we parents of kids with sensory issues, ADHD, and autism are not dealing with “mass hysteria” and aren’t being “duped by the pharmaceutical companies” into imagining our kids need help. And I’ll choose to feel sorry for those who don’t know what a joy it is to have a quirky kid and a slew of supporters cheering you on whenever you feel discouraged. Thank you to ALL of you who participate in this marvelous community of people who care about kids with hidden disabilities. I know you’re out there and I appreciate you!

(Okay, I can’t help myself. Here are some helpful links for finding support groups and resources for your quirky kid: http://www.sensorysmartparent.com/websites.html )

NEW WEBSITE AND BLOG! If you liked this article, PLEASE come join me at the new www.SensorySmartParent.com and sign up for my NEW newsletter and blog. Thanks!

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Sensory Processing Disorder and the 7 Senses

Sensory Processing Disorder is real and it affects our 7 senses. There is so much to learn about how to help our kids with sensory issues!

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April 9, 2012 · 3:03 pm

Going to Sleep: Bedtime Tips for Toddlers and Children with Sensory Issues, or Who Just Have Trouble Falling Asleep!

Quality sleep is crucial for quality functioning, and yet we are a sleep-deprived culture. Adults drink coffee and push themselves past their tiredness, while children will naturally push themselves to be more alert and then not be able to calm down. Children with sensory processing issues usually have poor self-regulation, meaning they can’t easily bring themselves from one state of alertness to another. When tired or feeling lethargic, they will rev up to a hyperactive state and remain there. They may even endanger themselves as they get toward bedtime and become more giddy and unmindful of where their body is in relation to people and objects. Accidents are more likely to occur just before bedtime when kids are getting wired as they are getting tired. Making bedtime for children with sensory issues drama-free and easy can be a challenge.

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Going to sleep will be easier for your child with sensory issues if you ease the transition with a predictable, calming bedtime routine.

For safety’s sake, and to get kids in bed on time to get the necessary amount of sleep, begin the children’s bedtime routine at least 30 minutes before their actual bedtime, if not longer. A few minutes between the announcement that it is time to go to sleep and lights out is not enough time for a sensory child’s body to adjust. Turn off the television and DVD early. Both are hypnotizing and overstimulating. The minutes will slip away as your child watches “just this last scene” and the next, and the next.

Dim the lights. The bright lighting that is right for playing with toys in the bedroom is too stimulating before bedtime. Read bedtime stories by lamplight not by a bright overhead light. Install dimmer switches so it’s easier to bring the level of light down as your child’s bedtime approaches.

Stick to a routine. The bedtime routine should include toothbrushing and putting on pajamas, and perhaps a bedtime story and a bath (note that bath time at night is too stimulating for some sensory kids). Many sensory kids have an easier time settling down if they perform each of these tasks in order. A visual To Do list made of stick figures, or a simple list for a child who can read, can help make the abstract agenda concrete: “Oh, I did that, now I have to do that.” Use a Time Timer® to show him when the lights will be turned out. Making time visible using a device like the Time Timer® can help a lot!

Winding Down. It can be tempting to turn on a television or put on a beloved DVD or video for your child to help her wind down before bed, but a better option is to read a book to her and discuss the events of the day in a loving and supportive way. Let your child pick a favorite story or nonfiction book. If you’re bored with the same old one, exercise your creativity. Can you alter your voice, ask your child questions, and encourage her to sound out words and read them?  You might also review significant events of the day in a positive way. For instance, if your child pitched a fit after school because she had to go to the dentist, talk it through and validate her feelings, and have a short discussion on how to make things easier the next time she has an appointment. Help her to go to sleep believing that tomorrow she will do better, with your support.

Block background noise. Close doors so she can’t hear the television or a conversation going on in another room. Consider using a fan (not necessarily blowing on your child, just “on”), aquarium, white noise machine, soft music, or even a radio turned to static to block out background noise that will keep her awake. You don’t want your child to get used to dead silence before bed if you can help it, but you also don’t want to make it very difficult for her to fall asleep because of all the activity going on in your home. Turn the television down in the living room or family room, close doors, and listen when your child says, “It’s too noisy and I can’t sleep!” Keep in mind that auditory listening programs such as Therapeutic Listening and The Listening Program can make it easier for your child’s brain to develop the ability to block background noise.

Provide deep pressure input. It may help if you massage her limbs, squeezing them gently and then releasing, to calm her body. You can teach her to tighten her muscles, then release them, body part by body part, in order to self-calm any time she needs to go from an alert to calm, or sleeping, state. She may need hugging, pillows pressed against her, or a weighted blanket to help her body to fall asleep. If you want to use a weighted blanket, consult a sensory smart OT about the proper weight and use. Or, use heavy cotton blankets, if they don’t make your child too warm.

All of these strategies will help your child with sensory issues relax his system and have an easier time transitioning from an alert to a calm, then asleep, state.

Some of the bedtime stories I recommend are:

Goodnight, Moon by Margaret Wise Brown. Look for where the mouse is hiding on each page.

Richard Scarry’s Cars and Trucks and Things That Go. Look for where the yellow bug is hiding on each page. Talk about the many cars and motorcycles, and what Lowly the Worm is doing.

Go Away, Big Green Monster! By Ed Emberley. This clever book allows a child a sense of control over a scary green monster, easing anxieties and reminding him that he is safe. I especially recommend this one for anxious children.

Pat the Bunny by Dorothy Kunhardt. This sweet storybook features textures, a mini mirror, and other interesting interactive features.

It’s Okay to Be Different, and other titles, by Todd Parr. These gentle, humorous books have bold graphics and simple, whimsical storylines about how it’s okay to be different, to have feelings, and so on. The I’m Not Scared Book is especially good for kids who need to talk about their fears and anxieties.

NEW WEBSITE AND BLOG! If you liked this article, PLEASE come join me at the new www.SensorySmartParent.com and sign up for my NEW newsletter and blog. Thanks!

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Filed under anxiety, bedtime and sleep, Practical tips for sensory issues, sensory issues in babies, sensory processing disorder, SPD and auditory, Uncategorized

Pink Toys, Boy Toys, Imagination Toys: Should We Push Our Kids to Play Differently?

The viral video of an adorable girl named Riley venting about how “the girls all get the pink princess stuff” has garnered a lot of attention, and inspired a thoughtful Op-Ed piece in the New York Times by writer Peggy Orenstein called “Should the World of Toys Be Gender Free?”

I’m old enough to remember when this controversy began in the late 1960s, when unisex toys and clothes were the hottest thing, and feminists were baffled by why, after reading “Stories for Free Children” from Ms. magazine to young boys and girls, they were still seeing boys gravitate toward trucks and guns and girls gravitate toward dolls. I finally got clued into what that was all about years later when I observed my own son, who was diagnosed with sensory processing disorder and multiple developmental delays at age 2, playing with toys. His speech-language pathologist and occupational therapist explained to me that imagination play, and collaborative play (“You be the cop and I’ll be the robber”) requires a certain amount of language skills, which requires the neural networks in the brain to be at a particular level of development. They told me it made sense that my son, who had verbal apraxia and a significant receptive/express speech delay, was only engaging in cause-and-effect play (“I drop the marble down the chute and it makes a cool noise!”) and parallel play (“I push my Thomas the Tank Engine train and that boy across the table will push his.”) I would not see a leap forward in imaginative play until he took a leap forward in language skills. I kid you not, the week that I noticed he was now stringing sentences together in a way that made sense rather than jumping from one thought to the next was the week I saw him animate the toy cars he loved to line up. “I’m a blue car,” one told the other. “Well, that’s okay. I’m a red truck.” Wow! Never before had I seen such clear evidence that my SLP and OT had an excellent grasp of development.  I also came to understand why my son, who spent a lot of time in his dad’s antique toys and collectibles store, had always preferred to push the button on the Buzz Lightyear doll rather than animate him, and loved to push the 1960s pink girls’ carpet sweeper as much as he loved to vacuum at home. Cause-and-effect play was his preference, and Thomas the Tank Engine was a major force in pushing him toward more imaginative play–which involved cooperative play with other kids who shared the public Thomas tables at FAO Schwartz and Toys R Us. I began to learn more and more about play and language, and discovered a marvelous book by a child psychologist, Lawrence Cohen, about using play to stretch developmental skills called Playful Parenting. It taught me how to get down on the floor with my son and engage in play with him, asking questions as the blue car or the red truck and suggesting activities, which expanded his language skills: “WHY do we want to drive over to the couch?” “BECAUSE we can park underneath it. It’s going to rain. We don’t want to get wet!”

So do we let our boys or girls stick with their favorite toys because those toys match with their their natural preferences, whether it’s because they are kids who think in pictures, kids with language processing difficulties, kids who are verbally gifted and highly empathetic but not skilled at visual/spatial tasks, or just kids who have typical language wiring for their gender? We know girls develop more whole brain connections, necessary for language development, earlier than boys do and continue to hold that advantage throughout life, but nature shouldn’t dictate our kids’ experiences. So how much do we push the child who wants to do puzzles alone to play with others and to try out toys that take him out of his comfort zone?

I think when we take our anxiety out of the mix, and push our kids to try something new using the just right challenge (not so much pushing that they resist aggressively, not so little that they make no progress in stretching themselves), they benefit, regardless of what the activity is. When we constantly send the message that “your type of play is inferior,” whether it’s play they do alone or pink princess/Barbie play, we make them question their worth. Being a bit lopsided in your play and your preferences isn’t such a bad thing, but we also want our kids to have the benefit of a variety of experiences and friendships. As Orenstein points out, there is some evidence that boys with sisters do better at relationships down the road than boys without sisters do, and girls with older brothers tend to be better at visual/spatial tasks than other girls are (although apparently my brother’s love for all things Tinker Toy and Lincoln Log had little effect on my brain…) Maybe girly Legos in pink and purple, with kits for building a spa or a cafe for the Lego figures to hang out in, isn’t such a terrible thing if it gets some girls out of their comfort zone a bit and learning some building and visual/spatial skills–and working with boys and girls who love the visual/spatial aspect of Legos. Maybe it’s not so bad if the girl or boy who loves to construct Star Wars vehicles out of Lego shows the kid with the pink and purple set how to modify that cafe to be more interesting. I still recall my brother’s GI Joe and my Barbie, Francie, and Skipper getting dressed to go swimming in the pool on the side of our home, which my brother figured out would be less muddy if we lined it with Saran Wrap. Yes, he had to put up with my girlfriend fussing over GI Joe’s outfit before the gang got into the Desert Jeep and got carried outside, but my Barbies’ hair was a lot less filthy thanks to my brother’s engineering skills.

Are there any toys or games that you’ve found bring different kids with different skills together? Please share!

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