Hartley's Life With 3 Boys: October 2009

Sensory Friendly Halloween Guide

Halloween is another one of those holidays that requires special planning when it comes to having a kiddo with SPD. Technically, I can’t think of many holidays that don’t require some kind of planning on my part…maybe Veteran’s Day? (Actually, that is a NO, because my father served in Vietnam and my boys are concerned that we honor him appropriately, so I don’t even get to take that holiday off. Ugh.)

All of that aside, my kids love Halloween. Which has made me start to like it too. : )

I don’t think it is just the candy (especially since we don’t eat it, but I’ll get to that in a minute), I think it is being up past bedtime, running around with their friends in the dark while pretending to be, this year, Captain Rex (Star Wars, Nick), a Police Officer (Gabriel) and Lightning McQueen (Matthew, and every other 3-4 year old on the planet).

This guide is aimed at those of us who actually want to have a Halloween, similar (not exactly) to the one we grew up loving. There are obviously better ways to handle sensory overload if your child can't do this (example being go to a friend's house so out of the way no one will ring their doorbell).

That said, here is what we do to make sure that Halloween is a success for everyone.

Costumes: This is one of the harder parts for some families. The more sensitive your child is to fabrics, tags, and seams, the more you should aim towards homemade costumes. Take what they actually like to wear, and figure out how to make it into something else. Sweats? Give them a lab coat and a stethoscope for a doctor (or vet, so they can carry their stuffed animal!). Another way is picking a costume that they are SO OVER THE MOON about that they will wear it. It is only a matter of an hour or so. Or, my favorite, scrap the costume idea and let them go as themselves. There are DOZENS of book characters out there like “Amber Brown” or “Junie B. Jones” or “Hubie” (from Black Lagoon Series). Pick a regular kid from your child’s favorite book, and there you go—instant costume no scratchy things required. : ) Follow your child’s lead on this. Every kid is different and you can have a great Halloween regardless of the costume.

Manage Expectations: This means my expectations and theirs. Ground rules are a must for our family. When I was a kid it was more of a free-for-all candy excursion aimed at garnering the most high end candy options possible (no crappy raisins; BONUS for full sized candy bars). For my kids, it is about the adventure of visiting the neighbors at night. They know ahead of time there will be LIMITED CANDY (can’t say no candy, I mean, it is Halloween).

Make a Plan for the DAY not just NIGHT: The kids are going to be ready to go Trick Or Treating at approximately 6:13am when they wake up Saturday morning. But, shockingly, Halloween doesn’t officially start then. Give them a specific plan for the day—breakfast, Halloween-themed Saturday morning cartoons, free play time, pumpkin craft, lunch, Halloween movie, snack, free play time, dinner, costume on, double check everyone in the family is ready, and go. A plan for the entire day will ease the stress for them and in turn you. I encourage you to make a visual checklist for the day's plan (like a story board, with pictures in list format). This will help keep stress down during the day for everyone.

Proprioception: You knew that was comin’, huh? LOL Get some heavy work in! Make sure their bodies are not already over-stimulated. Don’t go to 4 parties, do the corn maze, get their photos taken and then expect them to eat dinner and go Trick or Treating. Keep the day simple and focus on at home activities. Do a Halloween movie, and use a weighted vest or heavy blanket, give them orange yogurt through a straw, or black and orange playdoh to squeeze and cut. Do this throughout the day. (Here is my list of other sensory diet ideas for home). My aim is 20 minutes per hour. Crazy, I know. But ya gotta aim at something!

Full Belly Before Trick Or Treating: I think getting my kids to eat BEFORE we head out is of the UTMOST importance. I need full bellies. We accomplish this by having a neighborhood Pot Luck in the front yard before the Trick Or Treating begins. Not everyone can do this, but the premise is still the same. Feed them lots of carbs (rice if you are GFCF) and protein. Limit the sugars, even natural ones like fruit. We need them to have energy so they don’t crash three houses down.

Plan Your Route: Our plan is rarely to stay out as late as possible or to go to as many houses as possible. We focus on our neighborhood (we have about 75 houses) and we have had to work up to that number. When the kids were younger, it was just our cul-de-sac. Make sure your kids are clear on where you plan to go, and if they are old enough, take a trip around your route before the big night when they are calmer and can see first hand what they will be doing.

Plan Your Return Home BEFORE You Go: You need to have a game plan for the “Let Down MELTDOWN” as I so lovingly refer to it these days. When they get home, what is the plan? What time will it be? How long before bed? How much candy can they have? You need a plan; the kids need to know it, and you NEED TO FOLLOW IT. Don’t get caught up in the “I know we said we’d be home by 9, but Suzie-O wants us to do one more street with her, and the boys really want to….” Bad. Bad. Bad. I’m telling you now, STICK with your gut. If you want to scrap the plan on a different Saturday night for no reason for go it, but don’t have a crazy-ramped up-nighttime-candy-induced-moment-of-delirium when you all of a sudden think your kids “can handle it”. You are NOT Suzie-O and her kids are NOT your kids. Your family functions better when there is a plan and you follow it. Go home.

Go Prepared: When you are leaving the house, make sure everyone is prepared! We send them with flashlights and easy to carry cloth pumpkins for collecting candy with their name embroidered on it so we don't get confused (or anxious and have a total meltdown over "HE HAS MY CANDY"...which of course happens anyway). We leave all of the extra pieces of the costume at home (this year that will include the homemade Captain Rex pistols, the hand cuffs, and the Lightning McQueen ear-mounted mic). And, no matter the costume, WARM clothing and tennis shoes for running (often this means layers UNDER the costume, their favorite soft sweats are good).

Now Prepare the Adults: My hubby and I get prepared too—good shoes for us, we pull the wagon pre-stocked with fish crackers, tortilla chips, juice boxes and/or water bottles, grab the camera, and a backpack (in case your child does end up insisting on bringing the whistle, the helmet AND their favorite stuffed animal, you can manage while still snapping photos in the pitch dark). The wagon is KEY for us (you can use a stroller or bike trailer or whatever you have). They will need a break. This is a LOT of sensory stimulation, especially in the DARK, so let them stop and have a snack--and take a ride. If it isn’t raining, blankets and stuffed lions can also be found accompanying our posse.

NO COMPETITION Rule: Trick Or Treating is NOT a competition. Not a competition for who runs fastest, gets the most candy or sees the most friends. This is an activity that requires all of us to be at each door before we ring the doorbell (which they take turns on a strict rotating schedule which includes any neighborhood kids that might be in our “pack”). We go over these rules, again, before we leave the house. I hear you saying “but when I was a kid….”, and again I say, “Your kids are NOT you.” Unfortunately, having boundaries to reinforce the fairness of the activity, allows each kid (SPD, NT or ASD—or any combo) to feel like they are included without hitting a trigger (anxious kids trigger easily; triggers are like feeling left out, feeling ignored, feeling like you are too slow, feeling like you’re the loser each time, etc.). We are looking for FUN not just free candy.

Costumes On, NOW WHAT? Put the costumes on the very last thing possible. How will your child know it is time to go? Talk to them about using their "eyes" to tell when it is time to go. Does everyone have their costume on? Check! Does everyone have their treat bag? Check! Does everyone have their flashlight? Check! Does mom have her camera? Check! Are we ready to play as a team? Check! Giving them a way to know when it is time to go without asking will be helpful in those last tense 5 minutes before the start gun. We don't want a meltdown during those last crucial seconds.

On Your Marks Get Set…..GO! OK, you are prepared, your kids are prepared, and now you must leave. Well, what are you waiting for? Don’t you think you’ve prepped enough? LOL

The Aftermath: Use the Halloween Witch to make life easier. You don't know her? The Halloween Witch comes (much like the Tooth Fairy) on Halloween Night after Trick Or Treating is finished when the kids are sleeping. She takes their candy to give to kids who don't have food (or whatever other story you'd like to implement) and leaves behind a toy for the child. We allow the kids to sort all of their candy out, and pick their top 10 pieces to keep in a ziploc baggie which is labeled with their name and placed HIGH up in the cupboards. Then, the remaining candy gets set out on the counter before bed. My deal is that the toy should be around $10 at most (this isn't like a big fat Christmas gift, it is a token of the Witch's appreciation). You can use an action figure, matchbox car, we even did umbrellas one year (they wanted them, and I was going to give them the umbrellas anyway--the old "Two Birds/One Stone" adage). We send the candy to my husband's work so I don't eat it. Which is GREAT for all of us and reduces stress and sugar intake for weeks after Halloween. Not to mention it reduces the chance of me gaining 10lbs in one week.

Now you are ready to get your little ghosts and goblins, or ballerinas (which I know nothing about) and Clone Troopers and have some fun.

Happy Halloween!

Sensory Showtime THANK YOU!

I wanted to post a quick thank you to everyone who participated in our Sensory Showtime last night.

Special thanks to our panel of experts, Drs. Brock and Fernette Eide (www.neurolearning.com), Erik Linthorst (www.austisclike.com), Carrie Fannin (www.sensoryplanet.com) Rosemary White OTR/L, and Dr. Juan Aragon.

It was a terrific feeling to have so many people supporting Sensory Processing Disorder awareness, the SPD Foundation and NW families all in the same room. I found myself trying to take it all in; take in a room full of people who came to support families like mine lending not only their time and expertise, but giving financially as well. It was very moving to say the least.

If you were unable to attend a Sensory Showtime in your area, it isn't too late to support the SPD Foundation and the invaluable research they are conducting on behalf of all of our kids.

If you would like to make a contribution please feel free to contact me or go directly to www.spdfoundation.net. Every penny counts.

A big shout out to all of our board members who also volunteered their time to help set up, check people in, clean up and MOST IMPORTANTLY share their stories: Sabrina, Mel, Laura, & Kim. You ladies ROCK!

What a sensational evening,

Right-Brained Math and Writing Standards

Homework seems to be getting harder and harder for Gabriel.

I was originally just stoked on the fact that his homework was primarily math, but even that seems to be a challenge for him these days.

It isn’t exactly the “math” portion, it is the right brained explanation that is required that gets him every time.

Example:

We had done three of four math problems—all story problems about coins. I do the writing for him, time saver and with handwriting issues it provides frustration relief. OK, so we had agreed on using “hash marks” to log our numbers.

15 whatevers plus 16 whatevers gives us 31 whatevers when we count up the hash marks. Easy.
For both of us.

Then we move to the last problem, it says that Dave had 22 apples, but used 7 of them to bake a pie. How many left?

I say, “Should we use hash marks again?”

Gabriel says, “No.”

“No?” I say confused, as this is the established format.

“We should count.”

“Sure, but how are we going to write that?”

He looks confused.

“We need to use the hash marks so we can tell how many we have. Right?”

“No, we just need to count.”

“Should we draw apples?”

“No. Count.”

“Ok, Gabriel, I get that we can count the answer in our head, but the work requires us to write down how we got to the answer.”

“I don’t understand.”

“Whatever we do, we have to write it here (as I place my hand on the paper). Whatever we do to solve the problem, must be written down.”

He is visibly frustrated.

Gritting his teeth at me.

Tearing up.

“Fine.” He grabs the paper and begins to write on it.

I look at it, it says “C” and “o”…

“What are you writing?” I ask, clearly this wasn’t hash marks or apples.

“ I am writing ‘counting’.” He responds.

“You can’t just write the word.” I tell him, although I completely understand why he thinks that is a good solution.

“I just don’t get it!!” He yells and storms out of the room.

*sigh*

How do I explain to my little black and white thinker that math has to be so right brained?

I know that we all have to learn the “process” of math so that we can build on each skill, but in some ways I call BS on that.

When I was a kid, I saw the answers in my head too. I got that 7 came out of 22 easily—but I had to show my work too. And that drove me nuts.

My mother was the same way. She could do my math problems virtually through calculus—in her head—no equation.

At some point, for my kid, I think knowing the answers trumps knowing exactly how he got there. But that’s just me.

Our other homework issue is obviously all of the writing.

There is no way we can write as much as is requested of us.

We have been struggling on a book report for two weeks.

Yesterday I broke down and wrote all of it for him (his words, my writing).

I know that is a solution, but I sure wish he had some kind of endurance.

Gabriel has an amazing amount of things to say—like most kids his age he is always thinking of something new and wants to share it.

Having him tell me his monologues verbally is OK (kind of grates your nerves some days) but if he could write it down that would be even better.

I got contacted by Handwriting Without Tears yesterday—a program Gabriel has been using since Kindergarten (over 3 years now) and that our school district adopted as curriculum last year.

This is a program I am very familiar with, but that isn't what they wrote about.

What they shared is that Handwriting Without Tears has created a new website (www.handwritingstandards.com) that is aimed at getting the educational community together to support implementing a Writing Standard for each grade level Kindergarten through 4th grade in each state.

My initial reaction was, “Oh great, another thing my kid can’t do.”

But after reading more about it, I am leaning the other direction.

Gabriel’s handwriting has been “behind” but “legible” (which is all that is required to deny him services--"legible") by school standards for his whole life (up until now maybe...lol).

During our IEP meeting this year, the school OT brought out a writing sample that was only 1 year old of Gabriel’s and it was obvious how far he had regressed—which is only ironic since last year’s sample was “on track” because he had been held back a year, so he didn’t receive additional writing help--didn't qualify for small motor skill writing support by law.

I put him in private OT all summer (and still this year in addition to school) to keep his handwriting moving forward, or at least not slipping further backwards.

The HWT Company aims to help this problem by outlining specific and measurable goals for kids’ handwriting by grade level.

An example that would’ve gotten Gabriel more help earlier in his life, and is PRETTY DAMN BASIC for kids in the 1st or 2nd grade would be, “Writing all of the letters of their first name correctly, without reversals or omissions”.

Hmmmmm.

If we had specific guidelines, attainable goals to work toward in Kindergarten, Gabriel would’ve qualified for help. He would've qualified in first grade too. And first grade the second time as well. : )

He would’ve had an IEP sooner.

And potentially had goals that could’ve really helped his writing.

That said, I should reiterate here that I have been more than impressed with Gabriel’s IEP “Team” at his school. They have always given more than was required. Always.

But not all schools work like this.

What about all of the other kids I hear about with SPD or PDD or a combo of other diagnosis’s that aren’t getting services they need because of this or that?

I am not sure exactly what my "official" stand is on this new Handwriting Standards, but I know that more help for my son is rarely a bad idea.

There are tons of arguments about whether or not kids should be forced to write. And I have to say when it comes to cursive, I think it should be an optional program—like an elective—in my opinion. I think cursive is a thing of the past—a dead art for many.

But printing is different. At some point, our kids have to write something. And they want to write. Gabriel WANTS to write what he is thinking down--but it frustrates him and makes him feel stupid when he can't.

Getting your ideas out on paper is self expression—it is showing the world you have something to say.

I am teaching Gabriel to type. That is good too, but that isn’t a permanent solution for him today.

And he will go to college. I hope.

So that means writing an essay for his SATs.

Basic printing would be a good skill by then.

And luckily, I think we are on track to be able to print legibly by about 2018—just in time for his junior year.

Until then, it is back to the homework grind for me. And Gabriel.

Maybe Nick will be able to scribe for Gabe soon?

My hand gets too tired. ; )

If you have any comments on the Handwriting Standards, I'd love to hear your feedback.

Hope school work isn’t getting the best of you,
H

Sensory Friendly Halloween Guide

All of that aside, my kids love Halloween. Which has made me start to like it too. : )

That said, here is what we do to make sure that Halloween is a success for everyone.

Now you are ready to get your little ghosts and goblins, or ballerinas (which I know nothing about) and Clone Troopers and have some fun.

Happy Halloween!

Eating (or NOT Eating as the Case May Be)

I hear so many kids have sensory issues when it comes to eating.

Won't eat this or only will eat that, and the funny part is that is NOT my Gabriel.

My Gabriel will eat virtually anything.

For Easter the month before he was two, he ordered Crab Cakes for brunch. And he ate every last bite.

To this day, he always asks for Crab Cakes for his birthday. Mmmmm.

He also has enjoyed anything spicy since he was a toddler.

We used to take him to this restaurant, in a strip mall by our house (we only had HIM at the time, so don't envision anything crazy--these were actually relaxing dinners out), weekly if not more--everyone there was SO in love with him, and so supportive of our desire to adopt him---

...anyway, he would eat the salsa out of the bowl with a spoon.

Crying the whole time.

Tears running down his face from the heat of the salsa, as he shoveled in and ordered more all while saying, "MORE. MORE." Which at the time was one of the few words he knew.

We later realized that this is a big part of this sensory SEEKING behavior.

Gabriel is crazy-oral and he loves to get spicy foods into his mouth.

He even goes through about a bottle of hot sauce a week. So much, in fact, that it drives me utterly crazy that I spend so much time seasoning (make that over-seasoning) the food I cook, that when he puts the hot sauce on it I can't help but feel offended. Ugh.

But for us, this really isn't an issue. It is a non-issue.

Having a child that wants to adventure into hot sauces, both Asian and Latin American inspired, he is pretty easy to please.

He has his challenges with foods being "mixed", like he loves everything in chili, and the taste, but is often annoyed that all of the ingredients are mixed up. Especially the stewed tomatoes which are always the first to be picked out of any dish.

All of that said, it is my Nicholas and his "Tactile Defensiveness" that has the most ridiculous, drive-you-to-pull-your-hair-out food issues.

Here is what he WILL eat (shorter than writing what he won't):

PB (He lives on this stuff. Really.)
Crackers (Wheat Thins, Goldfish, Graham)
Pizza (Pepperoni only)
Chicken Nuggets (McDonald's or Wendy's, usually, at home ONLY microwaved dinosaur--not the new Mickey version from Costco--that damn Costco!)
Refried beans
Tortilla Chips (plain potato chips are usually OK too)
Oats & Honey Granola Bars (a recent addition that has become part of the PRIMARY diet)
Instant Oatmeal (Maple and Brown Sugar ONLY)
Pancakes
White Rice (but he only likes the sticky kind, not the basmatti I have in the rice maker)
Junk Food (cookies, cake, candy, but he usually only wants the vanilla flavored)
Yep, that's about it right now.

OK, so this isn't a bad list--really it could be worse, and I work hard to make sure that no one item is removed from this list--the variety needs to stay.

But so many people I talk to have children that have similar eating habits, sometimes worse, and sometimes better. That doesn't stop it from driving me crazy.

So, this is what we did:

We had him go to OT once a week, for 6 months (we stopped when school started up) for tasting new foods with another child the same age with similar issues—nice to do it in a group activity. He is allowed to smell the new food, lick it, put it in his mouth and spit it out, or simply bite and chew it (a “No Thank You Bite”). This is SEPARATE than meal time which allows him not to have the pressures of having to eat something to fill him up with his mother standing over him, and it is more like a game. It has helped expand his eating immensely, albeit very slowly.

Through this process he added apple slices, lettuce, bread (that’s a big one for me, making sandwiches possible over the summer, but we have pretty much lost it in the last few weeks), apple juice and a few others. He is more willing to try things at home—actually asking to try things without me having to request that he do so. The point here is that what he is willing to eat is expanding…that is what I am looking for ultimately…a little more each month (or year!).

This process has also allowed us to STOP fighting about food. I hate the battle over what he eats almost as much as the fact that he won’t eat anything I cook! I feel like we are both doing our best, asking for help from our OT, and working to address keeping him healthy. No control battle, just teaching. Giving the control back to him was a relief for him, I am sure, but also a HUGE relief for me—I don’t need more things to worry about!

I would encourage you to try this with your OT if your child's food issues are driving your family crazy, but would also highly recommend for your own sanity that you try to let it go as best as possible. Give your child a vitamin (mine actually won’t eat these, not even the gummy ones), and sneak in what you can (remember that cereal and fish crackers fortified, not the best way to get vitamins and minerals into him, but better than nothing).

Obviously I am not a doctor, so please check with yours to verify the health of your child.

If you are unsure about the idea of "letting it go", or think it sounds too much like "giving in" then I highly recommend using Collaborative Problem Solving, I highly suggest you read the book (The Explosive Child) which will help you figure out how to choose your battles and make meal time (and other issues) a win-win for you and your child.

Food for us is in the "not worth a meltdown" category. It really is not that important to me that he eat something else that I would sit at dinner every night and argue, yell, punish, force food on or other wise engage in a crazy control battle with my willful child. : )

It is important to me that he stays healthy and that I am as stress free as possible. That can be accomplished, believe it or not, on a strictly PB and Crackers diet. I've seen it with my own eyes.

So for anyone out there having an eating battle at home--with a SPD kiddo, an ASD kiddo, or just an every day NT kiddo, I say, "Let it go." And today would be a good day to start.

Enjoy your lunch, whatever adventurous, or not-so-adventurous, option you prefer,

PS: Photo is of Nick's favorite lunch item...OK, technically, the only lunch he eats. Yes, people, he eats one of these "to go" cups of PB with a granola bar dipped in every day for lunch. With milk. White milk ONLY (his choice). Sure makes packing lunch easy! Ah...the sliver lining.

We Have TWO Winners!

The official Sensitive Sam giveaway has ended, and Marla Roth-Fisch has graciously offered not just one autographed copy of Sensitive Sam, but TWO!

Woooo Hoooo!

Emma

and

Chyna

You have both won copies for your family!

If you would both please email me privately and give me your full names and addresses, I will have Marla ready with the pen to send you your copy. I also think it would be cool to send me your child's name, and then the book could be made out the them individually as opposed to you if you prefer....right Marla? :)

Thank you to everyone who entered and everyone who read the interview. The interview will continue to be available on my blog here if you would like to share it with anyone in the future!

Look forward to next month's giveaway--brand new sensory friendly clothing called "SOFT". Yes, you heard that right--FREE CLOTHES!

Enjoy your weekend,
H

REPOST: Sensitive Sam Giveaway and Interview

Please give a warm welcome and a virtual round of applause to Marla Roth-Fisch, author and illustrator of Sensitive Sam. Marla, THANK YOU for joining us here on my blog!

Hartley, a genuine thank you! It is my pleasure to join and contribute to your blog and a terrific way to share my new award winning children’s book Sensitive Sam.

I respect the grassroots approach to create continued awareness by sharing resources and experiences about Sensory Processing Disorder (SPD), it helps produce positive results for our children with SPD and truly is the backbone to the Sensory World.

I am looking forward to talking with you more about Sensitive Sam, but since you are a mom with an SPD kiddo just like me (and my readers); I would like to learn a little more about you and your family’s journey first. Can you tell me about yourself and your family? Besides being an author and illustrator, what keeps you busy? And you can’t just write therapy appointments. : )

I was raised in Pennsylvania, and then moved to Southern California, where I lived for over 20 years. There, I met the man of my dreams – whom I have been married to for 15 glorious years and we have two beautiful children: daughter Abi, 10 going on 20; smart, empathetic, athletic and creative and JJ (Jason) 8, soon to be 9 (a.k.a. Sensitive Sam); bright, energetic, sensitive, and has a great sense of humor. I fall more in love with my husband Aaron each day; when I see him fathering the kids, from sports and brain teasers, to religious school and life lessons. We also have a dog, (he thinks he is human), named Bronco, a mini-Labradoodle, who is the best dog ever! We reside in picturesque, Highlands Ranch, Colorado.

I believe I have created a successful work/life balance:

• Board of Directors, Sensory Processing Disorder Foundation
• Assist in the marketing of Sensitive Sam with the Future Horizons marketing guru, Lyn.
• Marketing consultant work on a contract basis
• Appearances, speaking engagements, and book signings for Sensitive Sam
• Most fulfilling and gratifying job of all time, mom, wife, volunteer

How did your SPD journey begin? When did you realize that your son needed OT like your main character Sensitive Sam did in the book?

Early on, JJ was over come with sensory overloads. He would have meltdowns 15 -20 times a day and at night, which was extremely frustrating and tough on him and an exhausting perpetual heartache on our family. When JJ was born at UCLA Medical Center, the newborn pediatric nurse came to our room in a panic, and said that JJ was crying for what seemed like, forever, and so loudly that none of the other newborns could rest. She said that I needed him in my room. I couldn’t wait to have him with me—I held him tight in a burrito wrap, and the crying stopped immediately. The nurse was joyfully surprised. (Could that have been my first red flag?)

Fast forward…

JJ started school at a local Montessori; he was full of sadness when we dropped him off in the morning, and even more upon our return in the afternoon. At conferences we spoke with JJ’s teacher, and then she asked the question “Do you notice any strange behavior at home? Well that opened up a tube of toothpaste, as my brother, the dentist, would say. The answer was yes—we had noticed lots of things, from his complaints about the tags in his clothing, the socks, the sheets, to him eating and not eating, his outrageous tantrums; the list was endless!

The teacher continued, “I noticed when we do an activity where the kids take their right hand and touch their raised left knee, JJ touched his right only.” I didn’t think much of it until later I found out, it’s a relevant and a crucial function of the brain called, “crossing the midline.” She continued, “I think that JJ may have Sensory Integration Dysfunction.”

“Sensory what?” I said with a lump in my throat. She immediately recommended a book to read, Out-of-Sync Child, by Carol Kranowitz. And suggested that we go get him checked out by an Occupational Therapist. “Could she know something we didn’t?” Aaron and I wondered.

Containing my emotional self until reaching the parking lot, the tears began and didn’t stop until we got home. Okay… I gave myself some time to pout, now, off to the library, book store and internet, to gather everything I could on this “dysfunction.” I read Out of Sync Child in a day, found the majority of the checks went into the “yes” boxes on the helpful Sensory questionnaires in the book. I couldn’t help but feel that this lady “Kranowitz” is a genius, she knows my JJ!

Questions about JJ’s future stirred inside my head; will he be able to learn like everyone else, what about his social skills? What is the best treatment? Where do we go from here? Will it ever stop???

I visited a referred, professional OT for a complete evaluation; JJ was diagnosed with “mild” sensory integration dysfunction, which is presently referred to as Sensory Processing Disorder (SPD). JJ’s troubles were clearly identified now, and we committed ourselves to the treatment plan with the OT. Love and patience, my special friends! Capturing each day’s triumphs and challenges in a journal, and listening to our OT as if her word was directly from the heavens above, we began to see the results after 3 short months!

Our sensory diet, included: brushing and joint compressions every 2 hours, playing with dry sand and beans, eating wet jumpy Jell-O and sweet smelling pudding, manipulating mushy green slime, finger painting with cans of shaving cream, making tons of homemade concoctions, and different color molding clay. We did activities to increase motor planning and balance in the vestibular system such as balancing on exercise balls, giving each other wheel barrel rides, and jumping on a mini trampoline. We played…a lot, taking our play (therapy) real seriously, and never missing the opportunity to engage, Abi joined her little brother in the fun. Not too surprisingly—JJ’s cousins even liked to get brushed!

As the weeks progressed, we incorporated speech therapy, writing classes using the Handwriting Without Tears program, found neat products to help him grip the pencil better, he enjoyed tracing super heroes and together all of these things truly helped JJ’s confidence!

My son Gabriel’s favorite part of the book was seeing how frustrated Sensitive Sam was when he thought of writing—an ongoing battle for us still at 8 years old. What are the biggest challenges you face with your child?

Food and eating by far was and sometimes is now, most challenging. The smells would make him gag, and the textures would cause him to throw up. The OT incorporated a fun eating and spitting out therapy together with smelling different scents. Applying that to our play routine, he started to enjoy some different foods and textures, amazing how that works!

Continuing therapy for JJ and our family;

• Knowing he is special, more sensitive then most
• Listening to his words
• Giving tasks a little at a time
• Limiting the amount of choices, but still allowing him to make a choice
• Offering techniques that help him cope with the senses around him

While I read your book to all three of my boys, my middle son, Nicholas, shot knowing glances at Gabriel—as if he was thinking “You do that too”. Although I know that Nick “gets” that his brother has challenges, this book was a good way to increase Nick’s understanding about SPD and his understanding of Gabriel as a whole (an education process that is never ending). How do you see the sibling dynamic play out at your house?

I thought that I gave “equal time” to each of my kids, but the sad fact is that as a parent with a child with special needs it’s very difficult to keep it the same. Recently, a newspaper reporter asked my daughter, “Did you feel left out while your mom had to deal with the meltdowns of your brother?” Her response, “I know my mom had to deal with JJ, and I really didn’t like when I had to sit and eat by myself, but I got used to it.” I just about lost it! I begged for her forgiveness, and told her how much we love and adore her, she forgave us… thankfully.

We all draw inspiration from our children to advocate for SPD. I hear from readers every week about how they are personally working to spread awareness; what made you choose to write and illustrate a children’s book? Have you always been a writer and illustrator?

I have always written from the heart, and drawing is a hobby. Never thought in a million years I would have a published an award winning children’s book helping others to understand their own children, and for their children to understand such a difficult and sensitive subject matter as Sensory Processing Disorder. I gain more momentum when I hear that Sensitive Sam has helped children throughout the country.

I have a wonderful publisher that has helped me get Sensitive Sam on the bookshelves. Here is something you may not know about them:

Future Horizons is the world leader in publications and conferences on autism and Asperger’s Syndrome since 1996, and felt by “extending into the broader scope of sensory issues (they) would serve even more (children and families) on the PDD (pervasive developmental disorders) spectrum.” When you get a moment, check them out, and they will send you free catalog if you request it. http://www.fhsensory.com/.

Often, as I was just explaining this week to my youngest son’s preschool, sensory issues are labeled as behavior issues. I was impressed that Sam’s teacher was able to recognize Sam’s sensory needs and communicate them to his parents (a glimpse into our future I hope!). What message do you want teachers to get from this book? What are educators and caregivers able to gain from reading Sensitive Sam?

The message I relay to teachers/educators/professionals is that Sensory Processing Disorder is very real, very misunderstood, and misdiagnosed…often! The importance of learning more about SPD can only help, because when there is even one child with SPD in a classroom, the disorder affects everyone!

This quote speaks for itself from a teacher who has a copy of Sensitive Sam:

“It’s so great to know that the relationships formed with parents and children are a win/win when the teacher has an understanding of Sensory Processing Disorder.”

This book also does a great job at giving families with newly diagnosed SPD kiddos a good look at what may be going on with their child and even more important a reassurance for their child’s future. What do you want to say to the thousands (not that they all read my blog, mind you. LOL) of parents out there who are in crisis mode—afraid that things will never get better for their child or their family?

My dad always said, don’t waste time with negative energy turn it into positive and productive energy. Frankly, blame, ignorance, and self pity doesn’t help your kid!

Interestingly enough, the more informed you get, the more you start to notice, and the easier it is to get help! I once brought JJ to a book signing here in Denver, and when the parents saw how wonderful he is now, they realized that there can be hope for them and their children with Sensory Processing Disorder.

When talking to parents I use the analogy “the toy in the cereal box”: It takes a while to find it, but it’s in there! Just like a child with SPD, they are usually loving, sensitive, bright and caring kids, you just need to get past the sensory stuff, their heart is your special prize.

I have spent a great deal of time looking through your website (www.sensitivesam.com), and it is obvious that you care a great deal about the “SPD Community” as a whole. Your work on the Board for the SPD Foundation is near and dear to my heart, as a member of our WA State Parent Connections Board; can you update us on the status of the DSM submission? (fingers crossed tightly)

Thank you for your commitment to the Parent Connections Board, they are lucky to have you. As an active board member for the Sensory Processing Disorder Foundation – helping out in a marketing capacity, and more, getting the opportunity to work with such wonderful caring people with common goals is a dream come true for me.

This is the update on the DSM (Diagnostic and Statistical Manual):
“All the researchers at the Foundation spent the summer gathering research reports from the scientific workgroups that we put together from Harvard, Yale, Duke and many other universities. We compiled a ~90 page report summarizing all the studies. We submitted it into the "black box" where the submissions go. We haven't heard anything formally, but we have high hopes that we will at least get into the new category, "novel diagnosis" which will foster research and help parents know it is real. To be formally recognized in this way would be a huge step forward for this disorder.”
~Dr. Lucy Jane Miller

I know my readers will be excited to get their own copy of Sensitive Sam (should they not already have one—we are SO lacking in great books for SPD awareness!) for themselves AND their child’s teacher—can we buy them at a local bookstore or is your website the best place?

You can purchase Sensitive Sam, and other books on Sensory Processing Disorder at the following locations: http://www.fhsensory.com/, http://www.spdfoundation.com/, http://www.sensitivesam.com/, http://www.sensoryplanet.com/, http://www.amazon.com/, http://www.borders.com/.

If your child is newly diagnosed, or concerned your child may have Sensory Processing Disorder, go read Dr. Lucy Jane Miller’s book Sensational Kids: Hope and Help for Children with Sensory Processing Disorder, you will be glad you did.

The Sensory Processing Disorder Foundation has just recently launched an e-learning resource, it’s helpful, unique and affordable and you are able to learn in the luxury of your own home. Please, check it out: http://www.spdfoundation.net/elearn/index.html.

Portion of the proceeds from Sensitive Sam benefit the research, education and advocacy of Sensory Processing Disorder.

I would like to thank you for making our lives just a little easier as SPD parents. Each new piece of information that spreads awareness and brings Sensory issues to the forefront of discussions with parents, educators, therapists and doctors is a true stepping stone towards a future where our children and their needs are recognized and accepted. It has been a true honor having you here to discuss Sensitive Sam and your continued SPD advocacy. Thank You.

Happy to do it!

If your readers walk away from this post knowing how important it is to get an early diagnosis and treatment for either their child or another special child that they may know with SPD, then I have done my job.

Please, buy the book Sensitive Sam; feeling alone and frightened is a terrible place for any child to be, especially one with SPD. Sensitive Sam helps make them realize how special they are, and that there is hope for them and their family. Sensitive Sam makes it so much easier on kids and parents to explain to extended family, teachers and friends what they are experiencing.

I would like to share real-feedback from children and adults that have already read and benefited from Sensitive Sam:

“I feel that way sometimes”

“Wow, another boy like me who gets brushed and doesn’t eat eggs, won’t wear jeans, socks or tags!!”

“I go to an OT office just like the one Sam does.”

“Hey, I feel that way too!”

“Your book is being well received, when I show it to parents, they generally want to buy it in triplicate – one for home, one for school, one for grandparents.”

“Darren refuses to read any other book, because he immediately understood Sam!”

“This book will be very useful to kids, parents, and teachers in helping them understand the process in simplistic terms.”

“My wife and I will be purchasing copies of the book so it can be in the library of the six elementary schools in the Farmington Public Schools” I challenge (kindly) the other parents to do the same for all the schools in their respective districts.”

“Finally, my son has an ally in his sensational world, it is wonderful for him to relate to Sam and watch him tell Sam what he does to make himself feel better.”

Feel free to pass this interview on to anyone who you may think would benefit from reading it.

_________________________________________________

WAIT! Did I hear you say FREE? : ) I thought so. . . Marla has graciously offered to give a signed copy of Sensitive Sam to one lucky reader! An autographed copy—so cool!

Here is how you can win: 1. You will need to join this blog (if you haven’t already) and 2. Answer the following question as a comment to this post:

Reader Question: How will you use your copy of Sensitive Sam to help educate the people around you?

Ok, once you have joined and answered, you are officially entered. The contest will run 2 weeks and will end at 7pm PST on October 9, 2009. Marla will have the honor of narrowing down the best 5 answers and then we will select the final winner by RANDOM drawing.

On your marks, get set.....GO!

You Know You're Teaching an SPD Kiddo When...

I still get comments on the "You Know When..." lists of mine, so I thought I would put together a new one for the teachers out there--

All of those men and women who have spent the last few weeks getting to know our darling kiddos as students in their class.

You Know You're Teaching an SPD Kiddo When...
(a list for teachers and all of us who watch our kids struggle in school)

1. He chews his pencil, both the eraser and the lead, all day long

2. He can’t seem to stay seated for over 30 seconds

3. He constantly wants to get a “drink” but really he is just playing in the sink

4. During circle time he sits virtually on top of the kid next to him

5. You have to remind him that he cannot touch the hair of the girl next to him—no matter how cool it looks

6. You implement Handwriting Without Tears program—because you can’t read anything he writes

7. He wears the same pair of “soft” sweatpants every single day to school

8. He gets out of his chair to ask you a thousand questions all day long

9. He talks through story time no matter how many times you tell him to just listen

10. At recess he climbs on the very TIP TOP of the jungle gym, where he is NOT allow

11. He hides under his table during the fire drills, crying with his ears covered

12. He lit up when he saw the ball pit in the resource room

13. He refuses to eat in the cafeteria on “Sloppy Joe Day” because it smells awful

14. The collar, the sleeves, and a strange place directly in the center of his shirt are all dripping with spit from being chewed on all day

15. He got kicked off the bus within the first 3 weeks of school because he was being “mean” to another student who was “in his spot”

16. He covers his ears when you raise your voice to get the children’s attention

17. He complained that the tag in his shirt was bothering him, but when you offered to cut it out you realized there is only a tiny fragment of the tag left from the previous attempt at removal

18. During art, he spent most of his time trying to glue his hands together instead of completing the project

19. He is very proud of being the first kid in the entire school to do the monkey bars backwards

20. He complains that it is too loud for him to concentrate, when you don’t hear a thing

21. He simply cannot stop himself from using the “off limits” stapler on the teacher’s desk

22. The first week of school he spends asking you a thousand questions about each thing you have hanging on the classroom walls

23. He cringes when you touch him—and if he is upset—touching him just makes it worse

24. He can’t keep his hands to himself when standing in line; he is pushing or bumping the entire time

25. He spends his entire recess spinning in circles

26. He is a little TOO enthusiastic banging the drum during music class

27. He always wants to be the “door opener” or “lunch wagon puller” EVERY DAY

28. He can repeat conversations you had with another teacher in the hallway

29. You find things in his desk that don’t belong there; teacher scissors, bingo markers, beads, crayons and other assorted small fun things

30. The bus ride to school seems to wind him UP UP UP— (and so does the bus ride home)

:)

If you have any more for the list, leave them in the comments below. I already have new ones spinning around in my head for a second list!

H

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Right-Brained Math and Writing Standards

Sensory Friendly Halloween Guide

Eating (or NOT Eating as the Case May Be)

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You Know You're Teaching an SPD Kiddo When...

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