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June Is For Fathers – Call For Submissions!

May Is For Mothers is officially over, and Father’s Day is around the corner. I am collecting stories, quotes, poems, Top Tens, photos and anything else you’d like to share about fathers this month. Submissions, suggestions and requests encouraged and accepted until the end of the month. Come on, dads – I know there is an audience waiting to hear from you!

Heaven’s Very Special Child

Considering that three different people sent this to me so far, I have a feeling that many of you have seen this poem already. This poem recognizes mothers and fathers of special needs children but it’s certainly worth sharing this month (and again for Father’s Day!).

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Heaven’s Very Special Child (1981)

by Edna Massionilla

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

May Is For ALL Mothers: Call For Entries This Month!

My goal this month is to have as many posts as I can about moms in honor of Mother’s Day (May 13th). Though I have a bajllion ideas there is no way to do this goal justice alone. So, I’m calling moms everywhere – of children with or without special needs, young or old, new or seasoned, stepmothers, grandmothers, mothers-in-law, mothers-to-be, might-as-well-be-mothers, single mothers, stay at home mothers, working mothers, moms of many or few – I’d like to hear from you!

Please send me your tributes, poems, stories, pictures, articles, top tens, or anything else that you feel honors mothers this month and I will do my best to get it up on the site.

Thanks in advance for the help, and keep an eye out for today’s kickoff Top Ten about moms!

The Importance Of Lying To Others (as seen on NYMetroParents.com)

Click the image above to read my most recent article on a very important social skill that many special needs children lack, lying.

Sensory Processing Issues Explained: Tantrums, clumsiness, ‘immaturity’ all could point to problems taking in the world

December 2, 2011 Leave a comment

Beth Arky is a writer at the Child Mind Institute, with a focus on autism spectrum disorder.  She has written extensively about the Asperger’s storyline on Parenthood andAmerican Idol’s James Durbin, diagnosed with both Asperger’s and Tourette’s syndrome.

Before writing for CMI, Arky was an editor at Entertainment Weekly and TV Guide. She has also written for People, the New York Daily News and USA Weekend, which featured her roundtable with the late Dr.Stanley Greenspan and singer Laurie Berkner on the importance of music in child development.

It looks as though I have finally met my match when it comes to word count! Don’t let the length intimidate you, though – every word is worth reading. My sincere thanks to Beth for sharing with us her fantastic gift and this comprehensive overview of SPD!

Sensory Processing Issues Explained: Tantrums, clumsiness, ‘immaturity’ all could point to problems taking in the world

When Jill went hunting for new shoes for her 6-year-old daughter, Katie, it wasn’t a simple question of finding the cutest pair in her size. While the second-grader doesn’t have wide feet, Jill learned the hard way that Katie needs a really wide toe box because “if she feels things are constricting at all, we’re done.” And because her daughter has balance issues that make her prone to tripping and falling, Jill looks for soles that aren’t too smooth, thick or clunky, with a rubber toe that won’t wear out quickly. 

Not long ago, mothers in Jill’s shoes might have been frustrated by what they’d likely have perceived as a “difficult, clumsy” little girl. But that wasn’t the case. Instead, Jill posted a distress signal on Facebook: “help! kid with sensory issues!” She also enlisted a friend who blogs about special needs and her 8-year-old son. The pair got a total of 43 responses. When Jill made her final online purchase, she shared her triumph as if it she’d snagged the Golden Fleece.

All the moms who answered Jill’s call are well-versed in sensory issues like Katie’s, which often are recognized during the toddler years, as parents observe an unusual aversion to noise, light, shoes that are deemed too tight and clothes that are irritating. They may notice clumsiness and trouble climbing stairs; and difficulty with fine motor skills like wielding a pencil and fastening buttons.

More baffling—and alarming—to parents are children who exhibit extreme behaviors: screaming if their faces get wet, throwing violent tantrums whenever you try to get them dressed, having an unusually high or low pain threshold, crashing into walls and even people, and putting inedible things, including rocks and paint, into their mouths. These and myriad other atypical behaviors may reflect sensory processing issues—children who are overwhelmed because of their difficulty integrating information from their senses. It’s often called Sensory Processing Disorder, or SPD, although it’s not recognized by the psychiatrists’ bible, the Diagnostic and Statistical Manual.

Sensory issues received widespread attention earlier this month with the autism- and sensory-friendly staging of Broadway’s The Lion King, in which potentially over-stimulating and distressing lights were dimmed and noise subdued. As one mom noted, after her son froze at the door to the theater—even though he’d been preparing for weeks—”My husband equates it to excitement times 100, so that it is no longer exciting but becomes incredibly overwhelming to the point of being a nightmare for him.”

In fact, SPD and autism spectrum disorder are often thought of in tandem because the majority of children and adults on the autism spectrum also have significant sensory issues. However, most children with SPD are not on the spectrum. It can also be found in those with ADHD, OCD and other developmental delays—or with no other diagnosis at all. In fact, a 2009 research study suggests that 1 in every 6 children has sensory issues that impede their daily functioning, socialization and learning. It isn’t hard to see how these types of challenges could lead to a child feeling anxious and depressed.

A toddler who covers her ears at the sound of a fire truck’s siren or a second-grader who insists that all the tags be cut out of his clothes may have auditory or tactile sensitivities. But unless these sensitivities seriously interfere with their lives, they don’t have SPD.

What parents often notice first is odd behaviors and wild mood swings, strange at best, upsetting at worst. Often it’s an outsized reaction to a change in environment—a radical, inexplicable shift in the child’s behavior. For instance, a first-grader may do fine in a quiet setting with a calm adult. But place that child in a grocery store filled with an overload of visual and auditory stimulation and you might have the makings of an extreme tantrum, one that’s terrifying for both the child and parent.

“These kids’ tantrums are so intense, so prolonged, so impossible to stop once they’ve started, you just can’t ignore it,” notes Nancy Peske, whose son Cole, now 12, was diagnosed at 3 with SPD and developmental delays. Peske is coauthor with occupational therapist Lindsey Biel, who worked with Cole, of Raising a Sensory Smart Child.

Another response to being overwhelmed is to flee. If a child dashes out across the playground or parking lot, oblivious to the danger, Peske says that’s a big red flag that he may be heading away from something upsetting, which may not be apparent to the rest of us, or toward an environment or sensation that will calm his system. This “fight-or-flight response is why someone with SPD will shut down, escape the situation quickly, or become aggressive when in sensory overload,” she says. “They’re actually having a neurological ‘panic’ response to everyday sensations the rest of us take for granted.”

There are some theories that kids on the spectrum who wander are often attracted to water because it offers input they crave, too often with deadly results. “Not all sensory kids do this,” Peske says, “but most gravitate toward the sensations and environments they find calming or stimulating. Their self-regulation is not great, so safety takes a back seat to their need to get that input or that calming experience of being in water.”

The tendency of children on the autism spectrum to wander off impulsively is a huge safety issue for parents. A new medical code may improve understanding and handling of this high-risk behavior. READ MORE

Children, teens and adults with SPD experience either over-sensitivity (hypersensitivity) or under-sensitivity (hyposensitivity) to an impairing or overwhelming degree. The theory behind SPD is based on the work of occupational therapist Dr. A. Jean Ayres. In the 1970s, Dr. Ayres introduced the idea that certain people’s brains can’t do what most people take for granted: process all the information coming in through seven—not the traditional five—senses to provide a clear picture of what’s happening both internally and externally.

Along with touch, hearing, taste, smell and sight, Dr. Ayres added the “internal” senses of body awareness (proprioception) and movement (vestibular). When the brain can’t synthesize all this information coming in simultaneously, “It’s like a traffic jam in your head,” Peske says, “with conflicting signals quickly coming from all directions, so that you don’t know how to make sense of it all.”

What are these two “extra” senses in Dr. Ayres’ work?

Proprioceptive receptors are located in the joints and ligaments, allowing for motor control and posture. The proprioceptive system tells the brain where the body is in relation to other objects and how to move. Those who are hyposensitive crave input; they love jumping, bumping and crashing activities, as well as deep pressure such as that provided by tight bear hugs. If they’re hypersensitive, they have difficulty understanding where their body is in relation to other objects and may bump into things and appear clumsy; because they have trouble sensing the amount of force they’re applying, they may rip the paper when erasing, pinch too hard or slam objects down.

The vestibular receptors, located in the inner ear; tell the brain where the body is in space by providing the information related to movement and head position. These are key elements of balance and coordination, among other things. Those with hyposensitivity are in constant motion; crave fast, spinning and/or intense movement, and love being tossed in the air and jumping on furniture and trampolines. Those who are hypersensitive may be fearful of activities that require good balance, including climbing on playground equipment, riding a bike, or balancing on one foot, especially with eyes closed. They, too, may appear clumsy.

To help parents determine if their child’s behavior indicates possible SPD, Peske and Biel have created a detailed sensory checklist that covers responses to all types of input, from walking barefoot to smelling objects that aren’t food, as well as questions involving fine and gross motor function, such as using scissors (fine) and catching a ball (gross). The SPD Foundation also offers a litany of “red flags.” The list for infants and toddlers includes a resistance to cuddling, to the point of arching away when held, which may be attributed to feeling actual pain when being touched. By preschool, over-stimulated children’s anxiety may lead to frequent or long temper tantrums. Grade-schoolers who are hyposensitive may display “negative behaviors” including what looks like hyperactivity, when in fact they’re seeking input.

At first, SPD parent blogger Hartley Steiner couldn’t understand why her son Gabriel’s psychologist suggested that he had SPD; after all, he didn’t fit the avoidance profile most people think of when they hear “sensory issues”—kids who cover their ears or won’t try new foods. As she wrote in her blog, Gabriel was “fine with loud noises, loved water, mud, hot salsa,” Steiner says. “He would climb to the tippity top of a play structure—and stand on top of it. No, my kid was not at all adverse to sensory stimuli—as a matter of fact, he couldn’t get enough.”

It took a year, and reading Carol Stock Kranowitz’s seminal book, The Out-of-Sync Child, for Steiner to realize there are two types of kids with SPD: sensory seekers and sensory avoiders. Those like Gabriel, who seek input, “are often considered ‘behavior problems,’ ‘hyperactive,’ ‘difficult,’ ‘stubborn,’ ‘coddled.’ Many of us parents have been blamed, told our kids need more discipline, or that they are ‘in need of a good spanking.'” Those who perceive things too intensely are avoiders; this can translate into refusing to brush their teeth or have their faces painted. To make things even more complicated, kids can be both seekers and avoiders and have both proprioceptive and vestibular challenges, along with issues relating to the traditional five senses.

Peske sums up the way sensory issues can affect kids this way: “If you’re a child who is oversensitive to certain sensations, you are not only likely to be anxious or irritable, even angry or fearful, you’re likely to be called ‘picky’ and ‘oversensitive.’ If you rush away because you’re anxious or you’re over-stimulated and not using your executive function well because your body has such a powerful need to get away, you’re ‘impulsive.’ If you have trouble with planning and executing your movements due to poor body awareness and poor organization in the motor areas of the brain, you’re ‘clumsy.’ Because you’re distracted by your sensory issues and trying to make sense of it all, you may be developmentally delayed in some ways, making you a bit ‘immature’ or young for your age.”

Amid this confusion, there may be relief for more than a few parents in recognizing what maybe causing otherwise inexplicable behavior. “When I describe sensory issues to parents whose kids have it,” Peske says, “the usual reaction is ‘Oh, my gosh, that’s it!’ They’ve been trying to put a finger on ‘it’ for many months, even years! The sense of relief that they finally know what ‘it’ is is humongous.”

General Tso’s Chicken, Beef Lo Mein and an Egg Roll

November 9, 2011 Leave a comment

Click here to read my guest post (titled above) about discipline of all sorts on Special Happens today.

Thank you, Gina, for including me in your wonderful blog, Special Happens… thoughts and resources from A Mom Moving Forward (www.specialhappens.com).

The site is a combination of community resource and personal blog, covering topics surrounding raising a child with special needs. Specifically included diagnoses include Epilepsy and ESES/LKS, Autism, Cerebral Palsy, Sensory Processing Disorder and Developmental Delays, though the coverage is not limited to those.

Top Ten: Things I Wish You Would Accept, No Questions Asked

October 25, 2011 4 comments

To kick off this new guest post series I am incredibly grateful to Lydia Wayman for her touching and insightful contribution. I would actually love to just cut and paste many of her posts onto my own website, but instead I will encourage you to visit her fantastic blog, Autistic Speaks.

Lydia is a 23-year-old author, speaker, blogger, and advocate from Pittsburgh, PA.  She also has autism.  When she’s not writing, Lydia enjoys reading, sewing and knitting, swimming, and above all, her mom and her cat.

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Top Ten Things That I Wish You Would Accept, No Questions Asked:

1. I can be surprisingly good at one thing (say, remembering conversations precisely as they happened many years after the fact) and surprisingly bad at another thing that you might think should be so much easier (like keeping track of receipts or remembering the procedure for filling a prescription).

2. Just because I have the words to type it does not mean that I have the words to say it.

3. I really do hate to melt down, especially in public. If there were another way out, I would always take it.

4. I never play stupid. If I ask a question or say I don’t get it, it means I don’t get it. Please don’t make me feel dumber by saying that I’m faking it, just because it seems straightforward.

5. What may be slightly bothersome to you, like the waistband on a pair of pants, can cause me to be a witch all day… or at least until I change clothes. If I’m crabby, it’s because something is physically uncomfortable in the sensory realm of things. Until that thing changes, I will continue to be crabby.

6. I can’t control my excitement over cats. So if you mention cats or point out a cat, realize that I’m going to get excited. Let me enjoy it. A little happiness never hurt anyone, eh?

7. I am often completely unaware of self-injurious behaviors. I scratch, hit, bite, and pick often, and much more frequently when I’m agitated for some reason. In the moment, I don’t know that I’m doing it; if made aware, it’s so compulsive that I almost physically can’t stop myself. But using my head, obviously I don’t like the results of it.

8. I am exactly the same person inside regardless of how engaged (or disengaged) I am with the environment and others in it. Yes, you might have to change some things based on how I’m reacting in that moment, but please continue to treat me like the same person that I am.

9. Engagement and happiness do not depend on one another! I can be just as happy off in my own world as I am fully engaged with you. However, a lot depends on you, here. If I’m disengaged and you’re forcing me to “act normal,” then no, I don’t feel very happy. If you’re interacting with me in a way that I can in that moment, then I can be as happy as I’ve ever been.

10. While autism does mean that I am absorbed within myself (aut means self, after all), that doesn’t mean that I don’t want you around. If you can come to me, rather than forcing me out of my world to come to you, then I’d love to let you in. There’s a whole world in here… maybe you should check it out.

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Like what you read? There is much more on Lydia’s blog – and, Lydia has written a book! Living in Technicolor: An autistic’s thoughts on raising a child with autism is a collection of pieces (poetry, blog posts, questions and answers, and recipes).  Her goal is to sell 150 copies in order to raise the money needed to bring her service dog home.  It’s available here and on Kindle here.

Two New Series on The Foorce This Week!

October 24, 2011 1 comment

It was a quiet weekend on The Foorce but not here at home, let me assure you. I was really excited to see so many new faces at the meeting on Friday morning, and of course am always happy to see old friends, too. Now with Monday here I am catching up on things and am pleased to announce that there will be two new regular series beginning on The Foorce this week!

Based on survey feedback and emails I have decided to start a Monday Minute, featuring James’s entertaining and accidentally insightful ramblings on the way to school. Look for today’s edition later on!

I am also starting a Top Ten series this week, featuring some fantastic guest writers! Below are links to some of my past Top Tens to give you an idea of what’s in store. If you are interested in submitting a guest post for this series, please contact me at msearfoorce@gmail.com for more information and submission guidelines.

Happy Monday!