SPD Blog Carnival -- Sensory Fun Photos

It is that time again!  Please join the SPD Blog Carnival by posting your link below -- our theme for July is "Sensory Fun Photos".

They say a picture is worth a thousand words -- so save yourself the typing, and link up your favorite photo of your sensational summer fun.  Did you have a mud fight?  Did your child jump in the sprinkler or practice balancing along the curbs?  Painting?  Sand castles?  Whatever sensory fun (or trouble!) your kids have gotten into -- post it here!

This is an amazing way to take the best of the best from the SPD Blogging Community every month, and publish it in one location -- kind of like having a monthly 'magazine' that people can come to and read. Everyone of you that reads this (even you lurkers!) can participate -- you DO NOT have to be part of the SPD Blogger Network to participate in the carnival. (But, if you blog about SPD, please consider joining because we would love to have you!)

I also encourage you to check out the other links posted here -- explore other blogs and learn more about what the SPD journey is like for families all over -- we have many new SPDBN members to learn from!

If you have any questions, feel free to email me.

Please share this post on your Facebook and on Twitter -- and any where else you can reach more SPD parents!

Now link up!
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Advice for High Schoolers on the Spectrum -- with Claire LaZebnik

Since I don’t have any experience whatsoever with parenting teenagers, let alone teenagers on the spectrum, I had to find an expert that had survived the teenage years and lived to talk about it for my back to school series.

And I did just that. Meet Claire LaZebnik.

Claire co-authored the book, Growing Up on the Spectrum, with Dr. Lynn Kern Koegel and is proud to be an Autism Mom -- and is also giving away a copy of her book (Totally radical, dude...nevermind, that was cool when *I* was a teenager...not so much now....). So, who better to ask for tips to help parents that are just entering this new realm of life with their child than a woman who had done just that?

Since teenagers notably have a short attention span, let’s get right to the answers, shall we?

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Hi Claire! Welcome to HLW3B – so happy to have you here! Tell me a little about yourself, your family and your son?

Thanks for inviting me. Let’s see . . . I’m the mother of four kids: the oldest has autism, the second oldest has Celiac Disease, the third (and only girl) has Addison’s and Hashimoto’s Disease and the youngest has so far dodged any diagnoses, but we’ll see what the future brings. In spite of all that, we’re a happy, silly, busy family and everyone’s doing great. My husband and I are both writers. He’s a co-executive producer on “The Simpsons” and I write books—mostly novels (my fourth one, IF YOU LIVED HERE, YOU’D BE HOME NOW comes out this September) but I’ve co-written two non-fiction books about autism with Dr. Lynn Kern Koegel who, with her husband, Dr. Robert Koegel, runs the Koegel Autism Clinic at the University of California, Santa Barbara. I originally met Lynn to consult with her about our oldest son, who was five or six at the time. I was blown away by the program she and her husband had developed: it all stems out of ABA (applied behavioral analysis) but they had spent time reviewing tapes of old clients to see how they’d progressed over the last decade or so, and used that knowledge to pinpoint certain “pivotal behaviors”—behaviors which, when appropriately addressed and improved, bring about even greater widespread improvement. Everything she suggested we do with our son made a huge difference. I’m happy to say that this kid—who was completely non-verbal at three and still mostly echolalic at six—is heading off to college this fall. It’s been a long journey.

Creating a Sensory Friendly Classroom -- with Dr. Roya Ostovar

I had the great pleasure of  interviewing Dr. Roya Ostovar author of The Ultimate Guide to Sensory Processing Disorder (available for purchase here) last April, and one of my favorite things about that interview (and her book) was learning about her dedication to creating sensory friendly classrooms in her community.

That sparked an idea -- What can I do to help parents, teachers and schools make classrooms sensory friendly?  The logical thing was to start by asking Dr. O for some advice. 

I was just thrilled that she took the time to answer my questions, especially since this time of year she dedicates every spare moment to running an Autism camp near her practice in MA. 

I think you will find her answers insightful and worth sharing with your child's teacher.  Get ready to click print and then tuck that page in a copy of This is Gabriel Making Sense of School for your child's first day back this fall!

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Welcome back Roya!  Thank you so much for returning to HLW3B!  I am excited to hear your ideas on making a sensory friendly classroom.  Let's start with why changing the classroom (vs. just accommodating the child) is necessary?

Thanks for having me back, Hartley.  SPD is on a continuum; it is a variation on a universal condition. We all have experienced times when we need to take a break from the overwhelming sensory information around us. For those with SPD, it is no longer about having sensory preferences, rather it is about having a real disorder that significantly affects their learning and quality of life. Having sensory friendly settings is common sense and it benefits everyone, all students and learners as well as teachers and staff. Changing the classroom also teaches all students how to find practical and adaptive ways of making their setting work for them to allow for optimal learning and functioning, a skill that is beneficial to everyone. It also makes more sense to change the environment to fit the child’s needs and not the other way around. Changing the classroom helps the child with SPD blend in with other students, and it is not isolating, or stigmatizing.

 

Come see me!

Where are my California moms?!

If you are in the Los Angeles, San Diego, or southern California area (or don't mind the drive), come out and see me as I support an amazing local company, Sensory Time, who is dedicated to supporting families like mine (and yours) in their local community.  Their sensory friendly play space -- is great -- but owner Lauren Allum's dedication to kids is truly inspiring.  Come talk with us, and let me sign a copy of my book for you,
This is Gabriel Making Sense of School. 

Lauren and Sensory Time are giving away 100 copies of my book. 
That's right, books are free -- and as always, so is the advice. : )

Love to see you!

Hartley

1001 Great Ideas -- Interview & Giveaway with Ellen Notbohm

During the first week of school last year, Nick’s Kindergarten teacher walked up to me, and almost under her breath like we were about to share a secret she said, “Do you know of any good books on how to teach a child with Autism?”

And sheepishly I said, “No.” Quickly followed by, “Not off the top of my head, but let me look into it.”

I was disappointed that I didn’t have a go-to book to recommend. I should have immediately known what to suggest to her – something that would be succinct, easy to understand, quick to read, effortless to implement and even more important – well organized so that she could go back week after week and year after year to look up what she needed.

Well, it took me all school year, but I finally found my go-to book: 1001 Great Ideas for Teaching & Raising Children with Autism or Aspergers by Ellen Notbohm and Veronica Zysk – Not to mention a foreword by Temple Grandin, PhD who says the book is “Genuine, commonsense advice that all parents and educators can quickly and easily use!”

And who argues with Temple Grandin? Surely not me.

I asked Ellen Notbohm, who has also authored 10 Things Every Child with Autism Wishes You Knew, 10 Things Your Student With Autism Wishes You Knew and The Autism Trail Guide: Postcards from the Road Less Traveled, if she was available for an interview, and I was thrilled to have her say yes. I mean, really, this is a woman who has 1800 great ideas on how to help my kids – this rates right up there with a new handbag and a kid-free vacation for me!

Now, normally I’d say you should take notes, but with 1800 ideas jam packed into this book, Ellen can’t possibly rattle them all off here (no, really, she can’t). But, good news:  Future Horizons has offered to give away a copy of her book! Look for details on how to win at the bottom of this post – or if you aren’t that patient (like me), hop on over to Future Horizons and buy your own copy now.

Either way, you are in for a treat!

Chaotic Week

Summer is just chaos.  True chaos -- sometimes fun chaos, but chaos none the less.

Matthew was supposed to attend camp this week.  That was an epic FAIL.  Unfortunately, even with 3 adults to help him 'have fun at camp' he wouldn't stay, cry, ran, yelled, knocked down a fence, and didn't exactly see camp as fun.

I stayed for an hour and a half on Monday, until I had to leave to get Gabe from school, and then 1 hour on  Tuesday, which was about a billion times worse than Monday, and then I called it.  No more camp.

Matt just isn't ready for that structure without the security of a familiar enviornment. Add to that how distracting everything there is -- in a good way -- and he wasn't interested in being told what to do.  He was on his own agenda and as alway, would've prefered to do his own thing.  But that wasn't the plan.

I broke down in tears on Monday when he went with the counselor into the 'circle time' area.  I sat in the van and called Jeff and cried.  Knowing that your child struggles is such a different thing that seeing him struggle.  I know Matt has challenges, but in the safety of our home, Matt is just a beautiful and quirky child who loves Thomas the Tank Engine and laughs at his brothers.  Camp highlighted his challenges; that was hard to see.

SPD Diagnosis -- Now What?

This is one of my most favorite posts, and I have noticed a new 'wave' of families that are joining my blog with newly diagnosed SPD kiddos (Welcome!  Look around, make yourself at home, and introduce yourself on comments!)-- so I thought this would be a GREAT time to repost it!

This is my Checklist for Families Newly Diagnosed with SPD (or still flailing about!). It is the basis of my therapy for Gabriel and what I rely on day to day to live. It makes me feel like I am empowered to manage his Sensory Processing Disorder instead of feeling like I am at its mercy all the time.

1. Find a qualified, trained, experienced Occupational Therapist.

You may think you already have this step down, especially since your child was probably diagnosed by an OT. But, and this is a HUGE but, you truly need to find an Occupational Therapist that has not only been trained in Sensory techniques, but one that is currently treating patients with SPD successfully.

There are many things that OTs continue to learn, and having an OT that is focused on sensory integration is key to your child’s ability to get the most out of OT now and in the future.

Did that scare you? That you might go back to OT? A great OT is there for you and your child as your child grows up (shocking to think your preschooler or Kindergartner will ever “grow up” but as it turns out, they will). You may find you go back to OT for many reasons; maybe you need a little help with something specific—like handwriting or social issues. A great OT that knows your child and family will be priceless for the rest of your child’s SPD journey.

We have been back and forth to the same amazing Occupational Therapist for over 4 years now. She has been my son’s OT, my personal therapist, my son’s social coach, his school advocate and now I consider her a personal friend.

2. Establish a Routine immediately if not sooner.

Routine is going to be your new BFF. I say all the time that routine is my dearest friend and is the one I miss the most when I don’t see her for too long. Making things predictable at home for you and your kid will reduce meltdowns. Plain and simple: Less Meltdowns = More Calm. More Calm = Happier people. That’s the way it works, I don’t make the rules, I just follow them.

Good Nutrition for Sensationally Picky Eaters - Guest Post

Did you know that 75% of children who have an autistic spectrum diagnosis have atypical feeding patterns and limited food preferences? Additionally, 50% of the autism population are hypersensitive to textures and lumps in their food? (Mayes and Calhoun, 1999)

I bet as the parent of an SPD/ASD kid you are NOT at all surprised by that -- right?  I'm not. 

So, when I saw one of my reader's blog, Healthy, Green and Frugal (three things I am not) I thought -- hey, who better to help me shed a little light on eating issues than this nutritionally savvy mom of two boys with sensory issues?  And let's be honest, advice from someone who truly gets your life is the best -- right?

So, grab your fork and get ready to wet your appetite -- and hopefully your kids' too!

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Hi! My name is Rebecca. First of all, I must say that I’m a big fan of Hartley’s blog. It has provided me with much-needed information, encouragement, and humor. Needless to say, I was flattered when she asked me to write a guest post about how to get our sensationally picky eaters the healthy nourishment they need. Given that my blog is called Healthy, Green and Frugal, you can imagine that instilling healthy eating habits in my two young boys is one of my top priorities. Unfortunately, their sensory issues sometimes make this a bit of a challenge.

Why *This* Makes Us Better

I say all the time that being a special needs mom makes me a better parent for all of my kids. It also makes me a better person. Here is why I think that--no actually, here is why I know that.

I am less judgmental. I used to think I knew it all about parenting—you know—how I “would do it” if it was my kid. How I wouldn’t let my kid ever do that: How in Fred Meyer, I would never let my kid demand candy or how I would NEVER let my kid have a pacifier at age 3 (god forbid older!). Now, when I see parents, doing things that I don’t necessary *understand*, instead of being judgmental, I can realize that maybe, just maybe, those other parents do know what they are doing, and it is me who doesn’t get it. You know, maybe that kid has SPD or Autism and without the pacifier to keep himself calm and organized there a giant fit-- maybe even the parents haven't gotten a diagnosis yet and are worried and concerned every time they leave the house that people like the former me are judging them. Who knows, right?

I am a better problem solver. It is amazing how after six years of teaching problem solving skills, how keenly aware I am of how to solve problems: With my all of my kids, with my friends, with my husband. I am not always great at it—meaning I am still human and can totally miss someone else’s view, but after a few years of Collaborative Problem Solving practice I am for the first time truly able to understand how it is possible to have a win-win solution. That can do wonders for your marriage, and I am really counting on it being helpful for the teenager years, especially with Nick.

I am a better friend. I have learned the true meaning of listening. After so many years of talking to people who flat out didn’t understand my life (at a time that I really didn't either), I have learned that what I wanted from them was to be heard.  I now realize how deeply we all need this -- no matter our problems, knowing that someone truly hears us, gives immeasurable emotional support.  I am now able to recognize this in the words of my friends. So when I say, “My kid had a meltdown today and trashed his room, threatened to kill me and then spent fifteen minutes crying so hard he couldn’t breathe” and my friend says, “Oh, my daughter has her first sleep over on Saturday!” I know now that she too wants the same thing as me—just simply to be heard. And I am actually able to do that for her which in turns, allows her to do it for me.

The Power of Proprioception

“Squeeze me.” Gabe asks for the tenth time, “Squeeze me harder mom.”

I lean over, and press his body against mine, gripping my hands together at the wrist behind him and squeezing as hard as I can.

“Harder.” He says quietly.

Gabriel needs deep pressure in his body to stay calm and organized, and I am happy to say that he is learning to manage this need in an adaptive fashion – asking for what he needs versus throwing himself on the ground or into his brothers.

However, he hasn’t always sought this input in such a socially acceptable way as asking with his words for it. And because of this, I have learned to be very creative in getting him the deep pressure he needs.

In case you have a child that runs high or simply craves this kind of pressure too, here are some tricks of the trade (please remember to use your common sense and consult your child’s OT before trying any of the therapy tools below):

Interview with Haley Moss, Author and Teenager with High Functioning Autism

When I see young kids with Autism or Asperger’s advocating for themselves, I get a sudden rush of excitement, followed quickly by an intense feeling of pride.

Although my children are not writing books, or getting interviewed by CNN, I do envision them some day being strong enough to tell their story, to share their experiences and to make a difference for the next generation of kids.

So, when I saw the new book, Middle School: The Stuff Nobody Tells You About, by 16 year old Haley Moss, I wanted to hear her story.

Turns out this young woman is nothing short of amazing.

She has not only become an author while still in high school, but is an incredible artist (she created all of the artwork for the book, including the cover). She is creative, has a great memory, can write poetry and says that she looks only at the positives of her Autism. Her mother told her about Autism by likening her ‘special talents’ to those of J.K. Rowling’s Harry Potter. And given Haley’s success, I’d say that the metaphor of her skills being ‘magical’ is fitting.

Haley comes across as a typical teenager, and even sounded like one during her CNN interview last April, when asked how her friends were taking her success, she responded with modest teenage charm, “Everyone is keeping it on the down low.”

Thankfully, she is here today to talk about her book which is aimed at explaining middle school to kids with autism, and their parents; from how to get through the classes, making friends, decoding texting acronyms and maybe most importantly (to me!), she even explains new slang, like “Down Low.”

So, if you have a child in middle school, entering middle school, or maybe you are like me and are already anticipating middle school with a certain sense of dread regardless of how far away it is; this is for you! Oh, and did I mention she is giving away a copy of her book? Oh, yes she is!

IMHO, U R in for a treat, and IIRC, many of U have kids the same age as Haley, so don’t say you’ll BRB, stay, read the interview and LOL with us! (Translation at the bottom of the page!)

4th of July Guide

You probably already have a pretty strong opinion of the 4th of July. It isn't exactly our favorite holiday either. Technically, we dsilke most holidays simply because of the intense amount of prolonged anxiety and lack of routine--and that is just my problem.

But back to the current holiday.

With 4th of July coming we are in need of taking many many precautions to prevent a meltdown worse than anticipated.  Irnocially, this year, I am much more worried about Matthew than Gabe.  Why?  Because Gabe goes to my mom's house for a fireworks-free night.  Matt on the other hand, he'll be home.  I have already ordered his noise canceling headphones to compliment his all-boy love of all-things fire related.  He is Jeff's mini-me afterall.

I am going to give you a list of things that *have* worked for us in the past, but are obviously no guarantee for your sensational kiddo, so as always, adjust where you see fit. : )

1. Give limited warning--it is my experience that if I talk too much about the noise that is coming and the problems Gabriel may or may not have he gets overwhelmed. I think the anticipation is just as bad, if not worse, than the event. Yes, Gabriel is clear on what 4th of July is and that it is coming, but we don't harp on it.  Same goes for Matthew -- he'll know it is coming, but we aren't going to focus on the 'noise'.

Gabe's New Bud

Gabriel officially has a new friend. Do you see him? He’s the dark haired boy, with the sparkly blue eyes and the kind heart (trust me, it's there) to the left. Yep. His name is Noah.

It is a little ironic that he shares his name with the famous Noah who saved the animals, two by two, during a rain storm, because in many ways, Gabriel has been in a storm this spring – and needed saving, both physically and emotionally.

Now their relationship has had its challenges, but what relationship hasn't?

The two unlikely buds met in class, Noah is 12 and in the 5th grade, and Gabriel is 9 and in second. Noah quickly felt as though it was his duty to protect Gabriel, being that he was the oldest and Gabriel was the youngest, that seemed natural. Noah has Autism, and this contributed to his desire to be Gabe’s guardian. Not a bad deal to have the biggest kid in class (technically there are only five kids..but still) as your best bud.

And you might think that it isn't a good idea for Gabriel to have an 'older' friend, but really, it is the best thing ever.  Gabriel already seems to 'play down' to those around him (given his HFA, he isn't mature, or even developmentally on target socially), and in our neighborhood there are mostly young kids, which doesn't give Gabriel the opportunity to have those kinds of social play skills modeled for him. The opportunity for him to 'look up to' someone is priceless.

FTF "Support Groups 101" by Carrie Fannin

Here is July's First Things First article, which was written by Carrie Fannin who is the mom to a beautiful teenage girl with multiple acronyms, as well as the WA State Parent Connections Host for the SPD Founation for the past 10 years, and founder of Sensory Planet, a social network dedicated to those caring for children with Sensory Processing Disorder.

For more information about First Things First click here. There is also a list of the previous First Things First articles under the "Interviews, Guest Posts & FTF" tab at the top -- with the obvious title of "First Things First Articles".

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Stanley Greenspan, the author of "The Challenging Child" (1995) had an insightful analogy to help us understand what people experience when they can not effectively process, or interpret, sensory input. He describes it this way:

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."

It’s no wonder that children with sensory processing disorders feel out of control, exhibit a whole host of behaviors and have difficulty concentrating and focusing at school. But now, also imagine being a parent or caregiver of one of these children.