Nanny Jo and the Underwear Solution by Caitlin

Guest post by Caitlin Wray of Welcome to Normal

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If you’ve ever watched The Nanny, with Jo Frost - and even if you haven’t – you’re surely familiar with the recommended practice of putting your child back to bed in silence over and over and over (and over and over and over) until they give up and sob themselves to sleep.

I have watched Nanny Jo do this consistently on her show (which I watch occasionally to make me feel better about the chaos in my house, since mine almost never comes close to the chaos she encounters in her travels). Apparently this approach works every time. It’s foolproof.

But is it SPD-proof?

My little SPD Aspie, Simon, was still waking up over a dozen times each night when he was two or three years old. “Tired” doesn’t really do justice to the extent of my exhaustion during those years, before we had a diagnosis that made so many of Simon’s challenges more clear.

Even without a diagnosis, I didn’t have the heart to let Simon sob himself to sleep as a toddler. He co-slept, we slept beside his bed, we held his hand, rubbed his back, got him water, sang lullabyes. None of which really addressed the silent sensory problems he was, unbeknownst to us, stuggling with each and every night. I remember he used to squeeze my pinky finger obsessively, to help him drift off to sleep. It baffled me, but now of course, I understand.

The issue with Nanny Jo’s techniques (which are of course not just hers, but are widespread) is that I’m not sure it’s wise to leave ALL parents universally with the assumption that their child’s sleeping problems are merely excess neediness, and that they should be quashed with a firm and inflexible routine. A routine that includes ignoring what they are saying to you, in favour of a silent and swift return to their bed.

Silent Prayer for School

With school around the corner (finally) I realize that the impending stress of IEPs, transitions and new teacher worries have begun to weigh heavily on my mind, and the minds of every special needs parent I know.  So to honor the new road ahead, I am reposting my school prayer.

Silent Prayer for School

Please let this year be successful.
Give me the strength to get through the IEP process.
Let my child qualify for everything he needs.
Let the school be on our side.
Let us work as a team.

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.

 

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!

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.

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!)

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.

Oh, Yes He Did

I haven’t blogged about Matthew’s antics in awhile and was worried that maybe I would forget all of the chaos he creates on a daily basis – so I am dedicating this post to his unique aptitudes. (Sounds better that “jackass behavior”).

Matthew spends most weeks on learning how to master a new skill. I think some of you are already thinking, “Oh, how nice.” But really, these aren’t the kind of skills you want your kid to learn; we are not talking about cleaning up toys, making beds or trying new foods. We are talking about Matthew’s little Engineer-In-The-Making brain that is wired to solve any mechanical dilemma. The primary focus these days is to first determine how things work – in order to apply those scientific principles to other more mundane tasks. Or at least that is what I like to think he is doing . . .

May/June found Matthew interested in the power and function of water. This little obsession has historically been focused on the hose, what you can spray, how far it goes, how much pressure is required, and of course, the need to turn it on and off repeatedly at will.

But, since every year spring brings new life, this year, spring brought new life to Matthew’s old water ideas.

He decided that he wanted to see if he could flood the kitchen with water.

Yes, you read that right, he wanted to flood the kitchen intentionally. Just to see what happened.

Interview With Taylor Morris -- An Exceptional Teenage Girl with Aspergers

I have the distinct privilege of welcoming Taylor Morris to my blog today. Taylor is an amazing young girl, who has Aspergers Syndrome, and is bringing awareness to the value of self-advocating for children and young adults with Autism Spectrum Disorders. Her insightful videos give answers to parents desperate to understand where their child’s mind is, why it goes there and how to reach them. I encourage you to take a minute and view Autism through the eyes of this exceptional young woman.

I have to admit that I am a little nervous to ask Taylor all of my questions – I think that is because I have never sat down and asked my ‘autism’ questions to a person with autism. I am overwhelmingly thankful that Taylor and her mother have agreed to have her participate in this interview. A big thank you to both of them for allowing me such an invaluable insight into autism and on behalf of me and my readers, thank you for allowing us the opportunity to better understand our children!

There really isn't anything better than hearing it directly from the source, is there?

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Welcome Taylor – thank you for joining me here on HLW3B! I have been intrigued by the videos on your website (www.meettaylormorris.com), discussing everything from your insider point of view of a therapy session as a preschooler to explaining your own world in calm detail. I think as a parent of a child with autism (HFA), I am mostly impressed with the confident and self-assured way you have of expressing yourself. To what do you attribute your ability to be so self aware?

I think I started being self-aware when my parents would remind me of the consequences of my actions. Having my parents tell me that something comes off as rude forces me to realize that I am one person who has to learn to function in a world with many others. This creates a self-awareness of my actions. My parents comments and hard lessons on the playground nudged me to realize the way I act and how present myself has much larger implications then I had previously thought. They taught me that being myself is much more then just doing whatever I want. From here I began to grow to be the person I am; I say what I truly believe but I calculate the implications of my actions as well. I believe this is what makes me come off as a mature self-aware person.

We Will Be OK; Guest Post by Caitlin Wray

This is the second "Autism Awarness" gem I have up my sleeve this month -- a guest post by my friend (or at least she is in my head, not that I have actually met her or anything), Caitlin Wray who writes beautifully at the blog http://www.welcome-to-normal.com/ about her darling son Simon, who was recently diagnosed with Aspergers and her equally adorable 1 year old Seth -- not to mention her hubby and herself.  :) 

Her article is a personal account of the moment most of us have experienced-- the moment where a doctor says "Autism" and our world changes.  And yet stays the same -- all at the same time. 

Dr. Roya Ostovar, Interview and Book Giveaway

I am very excited to be hosting Dr. Roya Ostovar, author of The Ultimate Guide to Sensory Processing Disorder on HLW3B today. Dr. Ostovar is a clinical instructor in psychiatry at Harvard Medical School and the Director of Ostovar Pediatric Psychology and Consultation in Belmont, Massachusetts (http://www.royaostovar.com/).

Her new book, The Ultimate Guide to Sensory Processing Disorder, provides much needed information on everything from the direction of new research to practical solutions for taking your sensational child on vacation – and, I am not kidding when I say this, virtually everything in between.

I am sure you are not surprised to hear that I jumped at the chance to ask Dr. Ostovar more about Sensory Processing Disorder. Truly, how often do you get the chance to go straight to the doctor with your questions – no appointments, no co-pays, no nurses, no screening, no assessments– just straight to the doctor?! This was an opportunity I could NOT say no to!

I was also happy to find out that Dr. Ostovar was willing to give an autographed copy of her book to one of my readers. Check out the bottom of the interview for details on how you could be the lucky winner!

And with that, grab your coffee, and let’s start the show.

OH Canada!

There is nothing more healing than laughter. And if you are new to reading my blog you will be happy to know that my motto is, "If you can't laugh at my life, you have no sense of humor."

I figured it was only fitting that I use that as the direction for the recap of our Victoria trip.

3 boys, 2 parents, 2 grandparents, 4 days, 2 holidays, 1 hotel, 3 boats, and A LOT of fun.

We were supposed to take the Victoria Clipper -- a high speed shuttle from Seattle directly to Victoria. That is what our tickets were purchased for, and that is where we arrived at 7:00 in the morning Saturday.

The water was rocky, and the wind blew hard. We rushed the boys into the terminal, where Gabriel's autism allowed us the luxury of passing the lines and pre-boarding. But we weren't exactly early, so there were lines that had to quite literally be passed.

As we moved through crowds of people in the terminal, much like an airline terminal, my darling Matthew crashed into the butt of each and every adult waiting near him.

"Oh, sorry." I said, over and over again, grabbing Matthew by his down coat and jerking him from place to place and he giggled with delight. Afterall, it was morning, and he was low. It was my idea to bring him to a room full of strangers and assume that this time, he wouldn't crash into all of them. What was I thinking? Matt was happy, and self-regulating. Try explaining that on the fly to a group of strangers.

Autism Awareness

Today is Autism Awareness Day -- and in honor of this day and my son Gabriel, along with all of YOUR sons and daughters, I have planned an amazing line up of interviews and guest bloggers throughout the month of April.

We begin the month with Dr. Roya Ostovar, author of The Ultimate Guide to Sensory Processing Disorder who will give us a fresh new discussion on SPD, and also share her experience working with kids on the spectrum in her private practice. She has some great insights into sensory issues, and is gracious enough to be giving away a copy of her book.

Then we are going to talk about 'Diagnosis Day', when you first hear out of a doctor's mouth, "your child has autism"; a day that changes everything, and nothing, all at the same time. My friend Caitlin Wray is going to share her relatively new experience, after her son was diagnosed this year.

Lynda Farrington Wilson will join us, with a great interview sharing her book Squirmy Wormy, a story based on her experience with her son, who has autism, and will highlight ways to help kids learn to manage their own sensory needs. Self regulation is key! I am also thrilled to say that Lynda has kindly offered to give away a copy of her book as well.

Then, my son Gabriel will make his debut here on HLW3B, as he leads a child-to-child interview with Taylor Morris, a teenage girl with Aspergers who will be here talking about the value of self-advocating and allowing us to see her world from the inside out. If you haven't had the chance to see Taylor, check her out here. This promises to be an amazing interview -- and an one you can actually share with your own kids.

Today is a day for awareness, to help bring understanding, but it is also more importantly, a day to celebrate the differences among all of us!

Are you wearing blue?
H

My Book's First Review and Giveaway!

As you all know, my book came out just barely a week ago, and I have truly enjoyed some great media attention since its release. I have received invitations to do radio interviews, magazine interviews, and I even have a television segment on my book and SPD coming next week (3/31) on King 5/Northwest Cable News here in Seattle. I could not be more pleased.

Until today.

Today the first of the reviews from fellow moms -- fellow SPD parents -- came out. One would think that this would be the least important review, a simple blog, with only two dozen followers, writing about my book. But it is truly the best.

Because of that, I would like to encourage all of you to not only go read the amazingly written review, but to enter to win a copy (the first copy I am giving away!) at Caitlin's blog, Welcome To Normal (http://www.welcome-to-normal.com/).

I have been impressed with everything that Caitlin has written , and am drawn in by her honesty and descriptive use of language as she writes about her son, his Sensory Processing Disorder, and their newest diagnosis of Aspergers.

Because of this I have also asked Caitlin to do an article for HLW3B in April in honor of Autism Awareness Month. (Side note, April will also have a giveaway and interview from Lynda Farrington Wilson, author of Squirmy Wormy and Dr. Roya Ostovar, author of The Ultimate Guide to Sensory Processing Disorder).

I encourage you to take a break from your busy day today and head over to Caitlin's blog, http://www.welcome-to-normal.com/ and read not just the reivew of my book (which really is good, and I am not just sayin' that because it is my book!), but all of her insightful posts detailing her relatively new journey through SPD and ASD.

Thanks Caitlin! And a big thank you to all of my readers!

Hoping for sunshine on the 3rd day of an entire week of half days (like torture),

H

Photo: Gabriel and I posing for a photo in honor of the book. (c) Sandy Clifton 2010

Official Book Release

I am so pleased to announce the release of my book, This is Gabriel Making Sense of School.

You can view and purchase it here:

http://www.amazon.com/This-Gabriel-Making-Sense-School/dp/1426927770/ref=sr_1_1?ie=UTF8&s=books&qid=1268676748&sr=8-1

You can join the facebook group here:

http://www.facebook.com/group.php?gid=204826618923

And even better, for all of you out there who want ideas for sensory accommodations for your kiddo, I have designed a downloadable Sensory Accommodations Suggestions Page that you can download here:

http://www.hartleysboys.com/p/sensory-accommodation-suggestions_23.html

I am so excited to see this nearly 2-year long project become a reality. I believe that SPD will get into the DSM and that this book will be key in helping educate not just teachers, but the children our kids share their classrooms with.

Here is to all of you for reading our journey and your encouraging words through the process of publishing this book. A heartfelt thank you to everyone.

Now, please, spread the word!

This is Gabriel Making Sense of School is officially available!

H

FTF "A Jaw Dropping Experience" by Marla Roth-Fisch

Towards the end of summer in sunny Colorado, my entire family wanted to get one last outdoor swim in. My husband and I swam and played with the kids in the large pool, enjoying a game of keep away.

As my son jumped wildly with excitement to catch the water filled sponge ball, which almost careened our heads from the other team, (my husband and daughter), he accidentally elbowed me with a left jab to the right side of my face.

As I heard the crack in my jaw, I didn’t think much of it at the time, except that it hurt…a lot! I wanted to shrug it off as my son’s apologizes overflowed.

I hesitated to show the pain and tears for fear it would upset him even more, my son has Sensory Processing Disorder, and does really well, but at times his feelings of empathy and concern are over whelming for him.

“It’s an accident, I’ll be fine” I repeated several times, attempting to stretch my jaw from side to side.

Letting the aches and challenges of eating go on and on for months, as each day I thought it would get better, I finally surrendered to the fact that I need to get some help; perhaps there’s something really wrong?

The kids and I went for our routine dental check up and cleaning. After explaining why I couldn’t hold my mouth open as wide as they would have liked, my dentist recommended that I visit with my orthodontist first about the jaw, then perhaps see a specialist.

I scheduled an appointment with the orthodontist, and had extensive x-rays taken; a cool kind of X-ray that circles your entire head giving a panoramic view of your jaw.

From what they saw, there was no “visible” crack in my jaw. Big time relief! Prior to leaving he adjusted my retainer so that the muscles of the jaw would relax, and fall into place. Ah…pretty easy fix, I thought, just have to wear a big bulky upper retainer 24/7 for the next couple of weeks.

As the weeks passed, I felt better but still as I opened my mouth it veered to the right, the bite was off and caused me to frequently bite my lip…not a pretty sight.

I will preface this by saying that I am a firm believer in both acupuncture and chiropractic work when done by a trusting and experienced professional: Next I was off to the chiropractor.

After an in depth consultation and some minor tweaking of my body, the chiropractor said that I have a dislocated jaw, and we need to work on it for some time…Yikes, what is ‘some time’? Did I have the time, could I make the time? Who has time?

Throwing in the towel about now sounded good; I’ll live with the pain.

Knowing that this treatment can make me better, I opted to continue. Thank goodness for insurance and the little positive voice in my head!

So, I scheduled several appointments at a local holistic healing center for adjusting the jaw back into its proper spot.

The treatment at times was definitely painful, however, using relaxing techniques, heat, cold, massage, the adjustments and Advil, I got through.

While in the waiting area of Whole Health Center, I noticed that there was a brochure on the treatment called Facial Rejuvenation. Hmmm…After all these months of pain, I could really use a “lift” in my face, and tackling the fine lines and wrinkles could be a bonus!

I started seeing my acupuncturist for the muscles surrounding the jaw. The chi (energy) and blood had stagnated contributing to the discomfort, getting needles stuck in my face was a welcome relief, if you can believe that!

Feeling much better, yawning with ease, more relaxed around my family, and realizing that if you don’t take care of yourself, there is no way you can be the best mom and wife to your family.
If you are on top of your game, everyone is a winner!

Marla Roth-Fisch, award winning author and illustrator of Sensitive Sam

Tips For Newly Diagnosed Families With SPD

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.

Routine means you need do the same thing, every day, at the same time. Don’t freak out. You can do this. It sounds like you are sacrificing a lot, and you are sacrificing the by-the-seat-of-your-pants style of living and parenting you may be used to. But it is time to be more organized – no running to the grocery store after you pick your kiddo up from school. No staying out late at a friend’s house when you KNOW your kid can’t handle it. This is about creating a schedule within the limits of your family. Those limits will get wider as your child gets older, but until then, let’s take your child’s world from being THIS BIG and bring it down to a more manageable this big.

Now, whatever you choose to do for your base routine each day (you need before school, after school and bedtime routines at a minimum in my experience) support your routine with visuals for your kiddo. This is especially important for young kids that cannot read, but valuable for all kids. Post routine schedules for everyone to see – including your spouse! My hubby wasn’t exactly thrilled with my new routine and schedule based living, but when he realized that I felt calmer (knowing there would be less meltdowns reduces my anxiety) and our kiddos felt calmer, he got aboard the Train. Chugga Chugga Woo Woo!

3. Establish your Sensory Diet immediately if not sooner.

Your Occupational Therapist will be your best resource for this to begin with. He/she knows your child’s sensory needs the best and can give you the right tools to use at the right time (we aren’t talking wrenches here, but info, ideas and activities).

This sounds daunting, I realize that. But, when your routine is in place, you will notice patterns of behavior: Every time my kid comes home from school he is overwhelmed and needs quiet chill out time, so I give him alone play time or TV with a heavy blanket (the proprioception helps my kid from getting *too* low); however, when he was in Kindergarten he came home WIRED and high high high, so we put him in a weighted compression vest for 20 minutes every hour until bed. Did wonders. Each kid is different—but they all have patterns.

Once you identify the patterns (journaling their behavior is an easy way to figure it out), share this with your OT and ask for ways to control your child's "engine". Once you establish the basics, you will be able to mix up what to do with your child and his/her "Sensory Diet" vocabulary will expand. You will also learn to be creative; a true Master of the Sensory Diet.

For ideas on what you can do at home that your kiddo will truly LOVE read this post and for ideas on toys to have at home to aide you in helping your child get some input, check out this one.

4. Eliminate Food Dyes and HFCS.

This is just a fact for most kids I know: Fake dye, High Fructose Corn Syrup and all those chemical additives in food are just plain awful. I limit sugar intake as well, but I would rather see Gabriel eat a dozen homemade cookies then even one Oreo. And don't get me started on the birthday cakes from the grocery store! Who needs a two inch tower of red icing? Gross.

All kidding aside, we really are pumping our kids full of all of these chemicals, and in my opinion, our kids who are already "sensitive" can't handle it. Why stimulate their brain more? Check labels for hidden HFCS. I was shocked to find out that Graham crackers and Yogurt have HFCS. Ridiculous.

Yes, on some level this means I have to be the Food Nazi, but you know what, I am willing to do it. At this point in Gabriel's life, it doesn't surprise him when I walk over to him during a birthday party to scrape the frosting off his piece of cake, or insist that he only have a middle piece with no decoration. That is a treat--store bought cake. Did you know they put HFCS in that stuff?

I really believe that making the effort to eat healthier--more whole foods and lots of protein -- makes a noticable difference in my kid. And, who knows, you might just lose some weight while your at it. : )

5. Find a Support Group.

Finding other parents that get what you are going through is necessary; note I didn’t say “optional” or “a good idea”.

This is crucial to your emotional health as a parent. Being the parent of a special needs child (Yes, SPD counts as “special needs”) means you are going to have a few extra bumps in the road. Establishing a support group early on is essential. And it isn’t just for you to vent, cry or otherwise find emotional support (although you will do those), it is also so that you have resources for tips on everything from school to travel to eating. The members of your group will become your best asset!

Here are some great places to start:

www.sensoryplanet.com – This is an amazing asset for all people, parents and caregivers of sensational children. A true social network of people dedicated to Sensory Processing Disorder. A must for any parent with an SPD kiddo. Don’t forget to make “friends” with the founder Carrie Fannin while you’re there!

www.spdfoundation.net – They have a great national program of Parent Connection hosts that provide in person support in major cities (and some minor ones too!) all over the US. Nothing beats in person support. Nothing.

http://health.groups.yahoo.com/group/sid_dsi/ This is an international group where you will find people from all over the globe.

http://health.groups.yahoo.com/group/SensoryStreet/ This group, originally based out of the Bay Area in CA, has hundreds of families supporting each other. A great find!

6. Take care of yourself/Find Respite.

This is an over-used cliche: Take time for yourself. One would think that finding respite should be intuitive--right? We all get that we need some time alone, time away and time to be an adult with other adults. But, as the parent of a special needs kid, there seems to be an endless number of things we have to do for someone else, namely our kid(s), and we leave ourselves last.

I encourage you to find friends, neighbors, family or a plain old babysitter (try the special needs section of http://www.care.com/, we have had luck there) that can watch your kid(s) and let them do it. If you don't have the extra money for a babysitter, ask others for help. If that is hard for you, read this post I wrote on the challenge of asking for help and why we have to anyway!

Having time to recharge is something that many women think is a luxury--not a right. You cannot take care of someone else until you take care of yourself. As I tell my children, this is NOT a point of opinion but rather a point of fact. No need to argue facts, just accept them (they argue anyway).

Once you accept that you do need respite and you deserve respite you are nearly there! To start with, respite can be just allowing yourself a shower, preferably alone, every day. Or maybe it means you spend the extra hour after the kids are asleep doing your nails instead of doing the laundry.

Finding time for yourself really does make you a "whole" person. You deserve that, and so does your sensational kid.

7. Strengthen Your Marriage.

If you would’ve asked me if my marriage was strong four years ago, I would’ve said yes. Why? Because I really thought that since my husband and I both were “aware” of how hard our life was and since I was sure that both of us understood that there was limited time (having three sons in 40 months is no easy task!) that it meant we were OK. Truth was, it didn't.

No matter how much you understand intellectually about the difficulties of raising a special needs kid, you can't rationalize away the problems that come with it emotionally--for both of you.

The rate of divorce for parents with a child with Autism is like 83% and I can't imagine SPD parents are too far behind that stat. Our children need us--and arguably need stable parents more so than the average child.

Take the time for your marriage. This means talk to your husband, go to counseling BEFORE there are major issues, have dates, talk to each other about each other (and not just the kids for pete's sake!) and spend time being a couple.

Please don't tell me you don't have time for those things or that you don't need them. Strengthening your marriage is NEVER a bad thing--it isn't like people say "Damn, my marriage so so strong I totally wasted my time and energy working on it!" Am I right or am I right?

When you have those things in place life will seem much easier. Not simple, not spur-of-the-moment-wine-tastings-with-friends-fun, but manageable. : )

If you have anything to add, by all means please post your tips in the comments below.

Enjoy the pic--the sand says "Mazatlan 2010" and the boys are yelling "Mexico!" In retrospect, they probably shouldn't be saying a word that ended in "O".

H

Vacation Rewind

I don't have an extensive amount of time to type, but I thought some of you might like to see the visual schedule I put together for our trip. It is pretty basic, but it will get us there.

I will give each child a printed off (disposable) version, with their name on it, and a marker to help them "check off" each step as we go. They can carry it with them and refer to it at will. I like doing it this way instead of the Velcro laminated version because during a flight/trip it is hard to not lose things--and when you do lose something, there are too many places to look for it. : )

Gabriel can't believe there are 24 steps to get there--me neither. *sigh*

In case you are looking for things to read while I am gone (I don't want you to go through withdrawals!), you can check out the blog series I did on our trip to San Diego last year.

Here it is:

The plane ride to San Diego (starring Matthew out-of-sync, Gabriel impatient, and me NOT killing a flight attendant).

Our zoo goes to the zoo (our group heading to the SD zoo).

Sea World (all of us petting sharks).

A day to take it easy (the San Diego Children's museum and more).

The final leg of the journey (Legoland).

The Beach (the last day at the beach, the trip home, and thoughts on my apt to get Gabe's official "ASD" diagnosis last year).

So, until I am back with more crazy sensory-induced antics to share, keep yourselves warm and I will be drinking a toast to you by 10am Friday!

Adios Amigos,

H

Blog With 7 Senses

As most of you know, I have been working diligently on a children's picture book, This is Gabriel Making Sense of School (due out Spring 2010) that focuses on children with Sensory Processing Disorder succeeding at school.

This subject is very near and dear to my heart.

Not only does Gabriel have SPD, but he still struggles at school needing movement breaks, heavy work and generally keeping his body regulated.

The first step in this process, as everyone out there with a SPD kiddo knows, is educating the school on SPD.

Although I keep reading good things from the SPD Foundation about the chances of getting SPD acknowledged in the DSM (the diagnostic manual that doctors, insurance companies and school districts base benefits off of), my kid is struggling today, and I can't put off getting him help until the medical world gets on board.

The first thing I struggle with when teaching anyone about Sensory Processing Disorder is the simple fact that there are SEVEN SENSORY SYSTEMS.

Not. Five. Nope. There are 7. SE-VEN.

Let's recap:

Sight -- Your eyes help you see

Hearing -- Your ears help you hear sound

Touch -- Your skin and fingers help you feel things around you

Taste -- Your tongue and mouth help you determine taste and texture

Smell -- Your nose helps you smell which is closely connected to your taste system

Vestibular -- located in your inner ear, it is the basis for balance and understanding where your body is in relation to its surroundings

Proprioception -- located in the muscles and joints and controls how much pressures is used (pushing and pulling)

I am guessing many of you knew this--but shockingly most teachers don't! I have pushed this so hard with Gabriel, that every year he starts up the debate with his teacher to prove that there are seven. That's my boy already starting to advocate for himself!

So I am starting a crusade to educate the entire WORLD that we have 7 senses.

Will you help me? Com' on -- Who's with me?

Grab the button I created up there on the left hand side of my blog and put it on your blog. Then encourage your readers to do the same.

Soon we will have dominance throughout the blogging community and will succeed in changing the face of the world.

OK, I'm getting a little carried away...

But, I sure can hope that spreading the word that there are 7 senses will help with the basics. Right? Like when you walk into your child's teacher the first day, you can skip the part where you have to explain, repeatedly, that there are seven senses....

Don't worry, you're not going to have to educate the masses empty handed for long. When my book comes out it will help you educate your child's teachers, peers and others not only about what is going on with your child, but also how they can help; including the fact that there are 7 senses.

So grab the button now!

When you take the button--leave a comment that you are doing so. It will encourage others to do the same, and then I can come to your blog and visit it. :) Like my little babies leaving the nest.

Now chant with me:

Se-ven Sen-ses, Se-ven Sen-ses, Se-ven Sen-ses!
H

INSTRUCTIONS in case you don't already know...for Blogger only...

1. See the code under the button? Click in that box and select all, you can do this by simply pressing Ctrl A. Then copy it by using Ctrl C (or you can use the right click on your mouse to do both operations).

2. Go to your blog dashboard and click "Layout".

3. Under Layout, click on "Add a Gadget"

4. Select HTML/Java Code

5. Paste the code from my blog, into that window with the right mouse function or Ctrl V

6. Give it a title like, "Hey there are seven senses!"

7. Click save

8. Click "View Blog"

9. Da Da! There it is!