T’was the Night Before an SPD Christmas

T’was the Night Before an SPD Christmas
By Patty, her husband and Hartley


T'was the night before Christmas, when all through the house
Not a creature was stirring, not even a mouse;
The snack packs, arranged on the counter with care,
In hopes, on our journey we’d be well prepared.
The children were nestled all snug in their beds,
While visions of Chex Mix danced in their heads;


Ma in her hoodie, and I in my sweats,
were to put away pillows and therapy nets.
When in the back room there arose such a clatter,
I ran at full sprint to see what was the matter.
When, what to my wondering eyes should appear,
But a puzzled old man buried up to his ears,
(In scooter boards, swings, and small colored spheres.)
Poor devil had brushed ‘gainst our therapy stash,
When it came down around him it made such a crash!


He recovered with grace, so lively and quick,
That I knew in a moment it must be St. Nick.
"What is all this stuff that you people collect?
Are you Circus performers?”--the old man interjects—
“I came here with toys, for the boys and your girl
But looking around I think ‘what in the world?’


This room that would normally have children’s stuff
Is packed to the gills with equipment enough
To start your own CIA torturing session!
Tell me I’m wrong and you’re not!” (oh good heavens!)


My wife and I snickered and held out our hands,
And reassured Nick we’d had no evil plans.
“Our kids have a condition; they have a hard time—
They yell when it smells and they climb up the blinds.

How Did You Know it Wasn't Just SPD?

This subject has come up a lot again, so I am reposting this from April for all of you who are now finding yourselves in this same position... <3

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I receive letters a lot from other moms who are going through what I have been through – and am still going through. Diagnosis, confusion, questioning, school issues – you name it.

But I got one this last week that surprised me.

Remember the Oprah thing? You know, how Oprah had a boy on her show with a mental illness, and because of the way the show was taped/cut it made it seem like this child’s behavior – aggressive, dangerous, and out of control – was all due to Sensory Processing Disorder?

Yeah, that one.

There were so many responses from parents who were terrified that their child’s SPD was going to turn into – that.

But the letter I received was a little different. Here is what it said,

“To be honest when I saw the recent show on Oprah, I was excited about it. I could see my child in the little boy on the show, especially her rages and thought this is so great! Finally I can show my family and friends what SPD is. Then the next day on blogs and forums I started reading about how upset people were about the miss representation of SPD and that the boy clearly had other things going on. This has lead me to be confused when it comes to my child.”

That threw me for a loop.

Why?  Because what about families like mine?  Those who had a diagnosis of SPD, but clearly there was more going on. What about them?

I am concerned that there are people who need to keep seeking help for their children – even after a diagnosis of Sensory Processing Disorder. And for that reason, I am reprinting my letter back to her.

Her question, “I have read/heard you talk about your son Gabriel, and how his first diagnosis was SPD. And that he later received other diagnosis as well. When you describe him, I recognize lots of the same traits in my child (4 1/2 years old). My Question is; when did you get the other diagnosis or how did you know it wasn’t “just” SPD?”

My response ........

What Do You Do All Day?

I recently asked on Facebook how stay at home moms of special needs kids would answer the question, 'What do you do all day?' and received some awesome responses!

My favorite was this one, from Jen, who said:


Jen wins the prize for best response to the 'What do you do all day?' question - here's what she wrote: Plain and simple. I put out fires (that makes me a fire fighter), I save the worlds of my boys (that makes me a hero), I have decoded Autism/ SPD/ ADHD (that makes me a translator). I teach my family all that I learn (that makes me a teacher) I cook, bake, decorate (that makes me Martha Stewart), I take care of the dog, cat and fishies (that makes me a vet) I work on the yard and flowers (that makes me a landscape artist) I clean the house (that makes me the maid) I suppose you could otherwise say I am forced to do the impossible each day and you know what...somehow I make it look pretty damn good by the end of the night. Now...if someone was to ask me when the last time I went to the Dentist, Gyno, or other doc beside some Minute Clinic / Urgent care....I don't think I could recall when the last time I took time for myself. I tried it once but clearly it didn't take, LOL.

But then I awoke to an email from my good friend Stark. Raving. Mad. Mom. who took the question I posted and RAN with it!  Here's her hilarious response to the question about what she does all day - complete with brass balls image.  Awesome.

I also thought, since I asked all of you what you do, I would share a post from me from 10/26/09 where I detailed my day.  You can read it here if you have time - because very much like SRMM's post, mine is long - because as every special needs mom knows - there is NEVER a short day.

For those of you who are wondering why I asked, the original question was prompted by me being forced to justify what I do all day to my soon-to-be-ex-husband's attorney.

And now I must go - I'm getting my boys ready for school while Gabe has a full psychotic break over not having milk and Nick is stuck trying to manage his ADHD and get his lunch packed all while Matthew stimms on a TV show and yet somehow I need to get in the shower ... Because I am meeting with a mediator and my soon-to-be-ex-husband in less than 2 hours to go over *just what it is that I do all day* in an attempt to be able to continue stay home with my kids. (Insert swearing) Maybe this calls for a new urban dictionary entry? ;)

Happy Monday!
H

SPD Awareness Month Guest Post - SpectrummyMummy

I hope you all know that October is Sensory Processing Disorder Awareness Month - you do, right?  I've been slacking this month posting everything I should, but when I saw this post from the talented Spectrummy Mummy on the 'awareness' that she has gotten from raising children with sensory issues, I knew I had to share it here!

Luckily for me she agreed to let me repost it (you might have read it on the SPDBN too).  So a special thanks to SpectrummyMummy who you can find blogging not only on the SPDBN, but on her own blog "Spectrummy Mummy" and of course on Twitter under, you guessed it, @spectrummymummy as well as Facebook.


Please show some love by leaving her a comment!


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To celebrate SPD Awareness Month this October, here are a few things that I’m now aware of, thanks to my children and their sensory issues.

My entire education was a complete waste of time.  Because if the teachers taught me that there were only five senses, who knows what other lies they slipped in there?

A mess is to me is tactile heaven to my girl.  Sometimes the carpet just has to be a casualty of war in the battle of the senses.  And be assured, it is a battle- I have the scars to prove it.

The bed has a different bounce to the trampoline and the bouncy castle, and that is why the kids just won’t stop bouncing on it. Ever.

A fistful of my hair is the source of all comfort.  It can soothe and solace like no other material on Earth.  A solitary stray hair on his hand, however, will send Cubby straight to a meltdown, even from the same source.  Even if it worked its way loose by his grabbing fistfuls for comfort.  I may take to wearing a shower cap during daylight hours, I’m sure I could work that look.

There are times that raising children with differences makes you feel terribly lonely.  To that, I say: get on Twitter.  There are more of us out there than you can shake a pop-tube at.  With so many of us, there is no need for anyone to ever feel alone.

It Will Get Better

This post has been published all over the place - first on the SPD Foundation's blog, then on Mamapedia, and now it is available in my new book, Sensational Journeys.

I am coming back to it today, because as life has it's ups and downs, in every single way (not just with our kids, but with ourselves), it seems that a gentle reminder is always valuable.

It Will Get Better

Before I ever got a diagnosis of any sort for my son Gabriel, I think everyone I knew had told me some version of the line, “It will get better”. I knew they all meant well, but I wasn’t dealing with your run-of-the-mill toddler tantrums with Gabe. Not even close. My son had meltdowns. Big, long, scary and excruciatingly loud, meltdowns. Gabe would cry for hours on end, for no apparent reason and crashed into walls for fun; this wasn’t typical development in my book, and I couldn’t understand why people were so quick to dismiss it with any of the old standbys (“He’s just a boy” or “He’ll grow out of it” or the non-committal, “It will get better”). How could people think that it would just get better? I wanted to believe them, I really wanted to, but I had lived with the ‘out of sync’ behavior for years, with no sign of it letting up, so I wasn’t convinced that my son would just magically ‘get better’ one day.

When Gabriel’s diagnosis came in at age 4 as Sensory Processing Disorder, I was so relieved that I finally knew what was going on, that I steamed forward – full speed – through OT and implementing a sensory diet at home and school without so much as taking a breath. If that was what my son needed then that was what I would do for him. After all, this is what would finally make things ‘get better’, right?

But you know what? It wasn’t easy and it didn’t just ‘get better’ as quickly as I was hoping. I was tired of being told by family, friends and therapists that things would ‘get better’. Did these people really understand what I went through every single day? Did they understand how upset my son was over the smallest things? How hard school was for him? How hard having play dates was? How difficult it appeared for him to enjoy the simplest pleasures of being a child? If things were really going to get better, could they PLEASE hurry?

Happiness

The often elusive, but always sought after concept:  Happiness.

Websters says that Happiness is defined as a: a state of well-being and contentment: joy. b : a pleasurable or satisfying experience.

That seems so incredibly oversimplified.  Is that even a good definition?  Yes, my boys love semantics, but let’s face it – so do I.  So….

I don’t think of ‘happiness’ as a state of ‘contentment’.  I might actually argue that happiness and contentment are at odds with each other.  Where happiness says ‘this is awesome’ contentment says ‘this will do’.  Then there is ‘joy’, which seems to be better suited to ‘elation’ than ‘happiness’, and ‘pleasurable’ seems to imply something physical, not emotional. 

So I am struggling with the idea of happiness these days. 

Oh, did I give you the wrong idea?  It isn’t a lack of happiness that has me questioning the concept, and delving into this random existentialist conversation about an intangible ideal, it is the opposite:  I’m happy.  Gabe is happy.  Nick is happy.  Matt is happy.

And somehow that’s kind of confusing.

When I think about happiness it conjures thoughts of my sons, my life, my marriage, and of course, the future.  Because when anyone asks you what you want for your kids, the answer is ‘happiness’.  When my husband and I agreed to be divorced, it was, essentially, because we weren't ‘happy’. 

How can so many things be so precariously balanced on a single abstract concept?

I’ve always thought about my sons' happiness.  Ok, maybe not in a present tense, but definitely in a future tense – I want them to have whatever it is out of life that makes them happy.  Truly, completely, happy.

But I never spent any time thinking about my own future.  My own happiness.  Was I living what I wanted for their lives?  Would they watch my example of how to live a 'happy' life, and be able to emulate it?  Simply: No.  But that changed when I separated.  I was forced to confront those ideals, and build around my own happiness.

Driving into the Unknown

I didn’t cry when my boys started kindergarten.  Not when Gabe did, not when Nick did, and even last week when I dropped Matthew off for his first day – with the knowledge that it was going to be a struggle – no tears.

But when I put Gabe on the short bus this morning, I couldn’t help it.  Tears just started pouring down my face as they pulled away with my 4^th grader. 

Today I cried with the acceptance that my son is not only different and has special needs, but he always will.  Another part of the grieving process, I suppose, as each time I accept something else, another something seems to be lost. 

It might sound confusing, right?  That I haven't accepted that Gabe would always have special needs, but the reality is that we all start off with the idea that we are going to 'therapy' our kids to the point of mainstreaming.  Or at least I did...but each year I get closer to the realization it isn't going to happen.  Today, I actually got it.

Gabe has been 'mainstreamed' his whole academic career.  So far.  Kindergarten was a struggle – with ‘only’ a SPD diagnosis, we had no IEP, and no 504 in place, but his teacher was great and I truly believed things would turn around as he got older.  Then first grade came with a 504 full of sensory accommodations, and a teacher that was the wrong fit, and I pulled him to homeschool for the end of the year.  I was still thinking (hoping) he would 'get better' or 'grow out' of some of his issues, but he began struggling academically and socially.  We decided to have him repeat first grade.  His second time in first grade was good, with a great fit teacher, and a spring diagnosis of Autism and Bipolar Disorder that allowed for an IEP.  My theory that things would get better seemed to be fading... Second grade came, and a new IEP that included learning support in addition to services, via pull out in the resource room, yet still he struggled.  I was feeling less optimistic.  By spring, we pulled him out in favor of a private school (after an inpatient psychiatric hospital stay) that would be less stressful, less kids, more learning support, and good for his self esteem.  Third grade continued at the private school, where *every* kid there has something going on, and Gabe fit right in. But I was increasingly less optimistic about his future prognosis, as learning had become so laborious for him, and socially and emotionally he seemed to be regressing, or at least not progressing.

That brings us to now. 

I wrote about how the evaluation process and placement process went this summer, and I am convinced we have chosen the best option. Truly.  But that placement is, for the first time, truly a 'special needs' program all day in a public school.  I have public school scars and so does Gabe.

Friday we toured the school, just Gabe and I, went through the classroom, met other kids, went through the routine, lunch, cafeteria and recess….and I felt a tinge of panic brewing.

Brewing about the reality that my son was going to be in an enclosed learning environment, worried about how he would react, and especially how other kids would treat him….

And he was worried too.  Worried that he would be teased on the bus again.  Worried about lunch and who he would sit with.  Worried about how loud the cafeteria would be, or how busy the playground would be.  Everyone there reassured him – the teachers, the aids, the therapists, and of course, me.  But, we all know that kids can be cruel (we also know there are angels among them), so it is hard to be 100% about how he will be treated.  And we all know that a child’s self esteem is paramount.

So today, when he got on the short bus, for the first time in his life, I watched him  pull away, exuberantly waving to me, clutching his Pokémon backpack which held his beloved stuffed squirrel, Chucknut, and driving off into the unknown…and...

… the tears just fell …

I Need an Easy Button

This is going down in history as one of the most emotionally exhausting weeks of my life.  The only thing I can come up with off the top of my head that immediately trumps it is the week Gabe was in the Inpatient Psychiatric Hospital.  So, yeah, this has been a long week.

Let’s start last Friday, where I sat through a three hour meeting going over the results from the 15 or so assessments that Gabriel had through the school district over the summer.  No ‘shocking’ news, nothing we weren’t actually aware of, but let me tell you that watching page, after page, after PAGE of testing results showing him at the LESS than first percentile in virtually everything (he scored 1.5 – 2.0 deviations below average on EVERY.THING.) is a version of heart wrenching insanity that encompasses your very being.  Add sitting there with the (soon-to-be) ex-husband, and the feeling is like submerging yourself in a bathtub of cold water right before dropping the hairdryer in.  Electrifyingly terrible.

And that was just Friday.  Keep reading, it just keeps going.

The weekend was a mix of frantic shopping, including a 30 minute wait to get our feet measured just to find out the store didn’t have the boys’ shoe sizes in stock, and then having to explain to the clerk that Matthew really wasn’t interested in the *other* shoes she has, because he would ONLY wear the Commander Cody light up Star Wars shoes that he picked out.  Only.  It also included a giant angry growling/screaming fit that Gabriel started in Gap Kids that forced me escort all three of them, like wild cats in a mouse trap, out of the shop, and directly out of the mall.  Which sounds like an awesome solution, if you don’t take into consideration that Matthew spied some ridiculously expensive toy store on the way in (with an Angry Birds display no less), and was INSISTING that we were shopping which meant to him: New Legos.  Which I refused to buy.  Clearly he wasn't happy.  And frankly, neither was I.

So, change of plans.  After dropping the boys off at McDonald’s with my parents, I rushed to Old Navy and did the shopping without them.  At least they have new (and clean!) clothes to wear.

That day was followed by Monday where I scoured every nook and cranny of Target, two Fred Meyers and The Rack looking for a suitable backpack for Matt, while coming up empty, and stocking up on socks and other such nonsense like tissues, baby wipes and Ziploc bags which are apparently ‘school supplies’ now. 

The Single Life

Remember the post I wrote a couple of weeks ago about the fact that I am getting divorced?  Yeah, of course you do.

Well the flip side of that is I’m single.  Sort of.  Not legally able to get married at this point (thank god), but able to date.  Something I am just a tiny bit out of practice on…which makes me over think it.

And while doing so, it dawns on me, that my life isn’t exactly private.

Clearly I do not have a ‘public’ life on camera, but once you know my name….well….you can Google me.  And that gives you access to A LOT.  Not every single part of my life, but LOTS of it.  40 pages of entries with my name on them.  My writing.  Video.  Comments. 

And that makes me nervous.  Why?

Because, there is no way to avoid the “I have three children” conversation, let alone “I have three special needs children”, and worse yet, there is NO way to minimize the chaos that is my life.  I cannot even attempt to sugar coat it. And last time I checked, you are supposed to put your proverbial ‘best foot forward’ on a date… Leading with my boys’ acronyms isn’t the way I would choose to start.

Which makes me slightly more than nervous.

So let’s assume if my hypothetical date wanted to know about me, he may have Googled me.  That means that when I walk into meet him - whether that is the first or second (or more?) time I've seen him, he has a big head start on the getting to know you part.  AND he may be scared.  Overwhelmed.  Something, right?  I mean have you read my blog?!

Um.  Yeah.

My point is that it never dawned on me I would be single and have my whole life – out there. 

But I do.

So, for any potential suitors out there that have stumbled onto this post after Googling me before a date, please be kind.  My boys are my life.  And they are AWESOME.

Also, thank you.  Because my husband hasn’t read my blog or anything else I’ve written in years, so in a way it is flattering that you are interested enough in what I do that you would read my blog.

Flattering and terrifying.

And for all of the HLW3B readers out there who are reading this, leave a comment for my potential new boyfriend so that he knows I am NOT crazy, and that having special kiddos - with quirks and special interests - does have an upside!

H

The Respite Requirement

I have been a special needs mom now for nearly 10 years. That sounds much more impressive than it is mostly because when my oldest was young, I didn’t believe I was a special needs mom, let alone have the guts to say it. The only thing I really would admit to was that parenting my son was challenging.

Ok not just challenging, but demanding, and unusually exhausting. Which made me feel like an utter failure. I remember having conversations with my husband where I was in tears saying I needed help with everything from the kids to the housework, where I tried to explain how I could be so overwhelmed after a day at home ‘just’ taking care of the kids and running errands. He never understood why I wasn’t giving Mary Poppins a run for her money and reminded me often that it was ME who wanted to be a stay at home mom. He was right  -  I did want to be a SAHM  -  but I never expected it to be so unbelievably hard, and I sure didn’t expect to be so bad at it.

I watched friends and neighbors parent their kids and it seemed like it was effortless for them. Packing up their toddlers and babies and heading to grab lunch with their friends at a restaurant, or heading over to watch the city parade on a whim, or strapping their little ones into a double stroller and hitting the mall to do some shoe shopping. How did they manage that?! Back then I didn’t really understand how incredibly different my life was from theirs. I hadn’t adopted the term ’special needs’ for my boys, or me and I sure didn’t think about respite. Perhaps I was even opposed to it. That somehow my need for a break only confirmed how much I sucked at parenting.

Fast forward a few years, add two more boys to the mix and a handful of diagnostic acronyms, and the picture was a tad clearer: I am a special needs mom.

Stronger...

I got this amazing card the other day from a good friend of mine who has been there for me through most everything these last few years and I thought that many of you would like it - so here's to Hallmark and to the amazing Linda Barnes who came up with these words...

They say 

what doesn't kill you

makes you stronger.

Well, what if 

you didn't sign up

for extra-strength training?

What if you'd rather 

catch a few breaks

once in awhile?

Is that so much to ask?

At some point, you'd think

you'd be entitled

to a free pass or two:

Skip this challenge.

Avoid that crisis.

Delete those problems.

It's not that you're not strong

or that you don't have what it takes 

to get through this.

You are, you do, and you will.

But you've built enough character

already, and it's time 

for things to lighten up a little!

I know it is not really my call,

but if I were in charge

of life's wheel of fortune,

you'd get a free spin.

And I'd be right there,

cheering you on!

And if I were in charge, I would give each and EVERYONE of you a free spin too.  You all deserve it!

With a special dedication to Alysia at Try Defying Gravity.

Also sending a big THANK YOU to everyone who has not just commented here and on Facebook with messages of support, but also for each of you who emailed me personally with your stories of understanding, I truly appreciate it all. 

H

Two Steps Forward, One Step Back

I’ll be honest, this is probably the first thing in my life I have written and didn’t know where to start - or end. So, I figure, go with what you know – be honest, straightforward, and do your best to find the humor. Here goes.

I’m getting divorced.

Yeah, not a real shock if you think about it. Three kids – two with special needs – one with perhaps more significant special needs, and the third? Arguably special needs – what with attention and sensory issues plus giftedness. Yeah. That’s easy on a marriage.

I know what you are thinking: But Hartley, you seemed so happy!

Ok, but it wasn't like I was going to write about all of the bad things going on.  Not the focus I want my blog - nor my life - to have.  Now this is where you ask, Why are you getting divorced?

The simple answer is: We want different things.

What those things are *exactly* is probably a gray area, but sufficed to say, we are no longer living together. And won’t be again. Unless fate is evil and cruel. Then, perhaps it will happen. But my money is on NO.  Yours should be too.  And if you don't believe me, Nick has read the kid's "My Family is Changing" book I bought enough times that he can recite the passage on "Divorce is usually forever" to you if that helps.

I don’t want any of you to worry about me. I know some of you will, and support is always appreciated (I am clear on my need for that!), but I also want you to know that I am a veteran at going through the grieving process. VET-RAN.  "Been there, done that", is an extreme understatement.

I’ll do this. And do it well.

So for the time being, consider HLW3B open for business! I’ll need the outlet, and you’ll need the laughs (and it won’t be bitter crazy-divorced girl ramblings all of the time).

So hang tight friends – we are in for a bumpy ride!

Oh, and in the mean time if you’d like to donate to my legal fees or set me up with a hot-man-who-loves-special-needs-kids-and-doing-laundry then send me an email! :)

Two steps forward, one step back. Right?

H

12 Ways to be a Better Parent

Did you see me over at the SPD Blogger Network giving my simple - but so often forgot - ideas for how to actually be a better parent?  And by 'better' I mean your children will like you more!  Stop by and leave me a comment! :)

Enjoy your weekend!

Hartley

Help the SPD Foundation WIN $250,000!

Hello Friends!

The Vivint Gives Back Project is donating $250,00 to the top charity in each region of the United States! All it takes to become the top charity is to get endorsements/votes from supporters like you. Whichever charity gets the most endorsements wins the $250,000 prize!

There are 2 phases. During phase 1 you can endorse the Sensory Processing Disorder Foundation every day until June 11th. The top 20 most endorsed charities from each region will move on to Phase 2. If they move on to Phase 2, please continue to endorse/vote everyday until August 27th. At that time, the charity in each region with the most votes will win the $250,000 prize!

Imagine the amount of research the SPD Foundation would be able to accomplish with $250,000! And all you have to do is take 30 seconds out of your day to log on to Facebook and vote. It really is that simple. Click the link below to endorse the SPDF. You have to have a Facebook account to do this. Once you click the link it will ask you to login to Facebook first. Click "login". Enter your login and password. Then click "allow". Then click "Like".  A box appears for you to enter in a message but then quickly disappears. This is okay.  Just scroll down and click "endorse". That's it! Please do this every day. There are only 9 days left for us to qualify for Phase 2.

Will you help the SPD Foundation win this prize by sharing this on your Facebook page, your blogs and Twitter to encourage your friends to endorse them too? Please say yes!  


Click the link to vote!


http://www.vivint.com/givesbackproject/charity/1022

Thank you!!
H

Is it Sensory or Behavior?

I am over at the SPD Blogger Network giving my take on how to determine the cause of your child's behavior challenges (Sensory vs. Behavior) - including the difference between a meltdown and a tantrum - important info for parents with kids who have ANY challenges - so stop by and leave me a comment! :)

Enjoy your week!

Hartley

WIN a Custom Weighted Blanket!

The SPD Blogger Network is giving away a custom weighted blanket of YOUR CHOICE from DreamCatcher!  Check out the review and enter to win! :)

Enjoy your week!

Hartley

What is Integrated Listening Systems (iLs)?

I have been inundated by questions about Integrated Listening Systems, and a number of other programs on Twitter, Facebook and through email lately.  For that reason, I wanted to point out a handful of things and share this interview with you again from Dr. Ronald Minson.

Quick tips:

When you are looking for a program for your child, always look for research.  Science.  Doctors.  Therapists.  Determine that it is a SOUND treatment before going further.

Don't get so excited about the testimonials that you forget to actually do your own due diligence.

Remember this basic rule of special needs parenting:  The plural of 'antecdote' is NOT 'data'.  That means that 10 people saying it works doesn't make it a fact.  It makes it their experience.  Each child is different, each family is different.  Do your own research.

Now onto this interview - with tons of information - to help in the never-ending-quest for helping our kids. :)

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As many of you know, I am starting Integrated Listening Systems (iLs) program with Matthew. When I posted about it over the holiday break on my Facebook page, it stirred up a great deal of questions, curiosity and of course, confusion.

Although I was inspired by Dr. Minson’s presentation at the SPD Symposium, and had the pleasure of speaking with iLS CEO Randall Redfield as well, I am by no means an expert on this system. Like most parents with children on the Spectrum, I know exactly what Matthew struggles with, but when it comes to being able to break down all of the “therapy” options out there, some of the details get lost in translation.

I do know what Matthew needs help with. He needs help managing self-regulation, controlling his movement through space (stop crashing, tripping, falling, clumsiness, core strengthening, all will help him stay seated at circle time), writing (spatial awareness on the page), and voice intonation (helping him use correct inflection when speaking – less ‘monotone’ and ‘scripted’). These are my biggest concerns for starting Kindergarten, and my greatest motivation to begin this program now – before summer.  (Update on Matthew's progress at the end of the interview!)

And those challenges are exactly what iLs has the possibility of helping. So, for those of you who have an amazingly gifted and awesome kiddo like Matthew, who just happens to be on the spectrum or have sensory issues, and might benefit from some help in those areas (and others), I wanted to interview Dr. Ronald Minson. And imagine how incredibly honored I was to have him say yes! Woo Hoo!

So, with that, please welcome Dr. Ronald Minson to HLW3B!

Thank you for joining me here today. I appreciate you taking the time to talk with me about the questions that my readers are asking!  Can you start by telling me about yourself? Specifically your background, education and experiences that has led you to be such a supporter of the Integrated Listening System?

My journey with this therapy began almost 30 years ago. It has taught me to have a great deal of empathy for the parents, teachers and therapists whose best efforts to help children learn sometimes fall on deaf ears and the children do not make gains nor improve as anticipated. My lesson in empathy came from my daughter. She was diagnosed early on with dyslexia, and our family immediately entered into the world of recommended therapies with the understanding that these interventions would help her to read, to improve her memory and math skills. After three years of speech and language therapy, special education, and private tutors, my daughter was no further along in her ability to read than she had been at the time of the original diagnosis. In fact, things begin to deteriorate significantly. She could not keep up academically with her peers and she began to label herself as dumb and stupid. On the heels of continued academic failures, she developed low self-esteem, loss of hope from failed interventions, and eventually, life-threatening depression. Antidepressants, the gold standard of treatment for depression, were ineffective.

I was in a full-time psychiatry practice at the time. Nothing in my medical experience had prepared me for this degree of failure. All the experts and specialists were unable to effect any significant improvement in Erica’s learning disability and her depression. I was at a total loss as to how to help my daughter. The frustration and despair from repeated failures to help her were only exceeded by my fear for her life. During a time when my daughter was having a significantly severe bout of depression (she was 19), I heard about listening therapy. As a doctor, this approach did not make any sense to me given my medical training. However as a parent who was watching his daughter fail at every turn, I was determined to try once again one more therapy. My daughter was willing as well. So we, father and daughter, started the listening therapy program together.

My Baby is on the Cover of ASQ!!

My baby is on the cover of Autism Spectrum Quarterly!  Woo Hoo!!

I cannot believe how grown up he is now - time moves by faster than we think.  :)

Take a minute to check out the new issue of ASQ.  An amazing and informative magazine that truly covers all aspects of Autism. 

"Gabriel's" issue includes....

When Your Child with Autism Wanders: Preventing a Parent's Worst Nightmare

Mike Frandsen delivers a timely and critically important article about the all-too-common phenomenon of wandering by individuals with ASD. Told against the backdrop of the tragic death of five-year-old Mason Medlam, Mike highlights the tireless efforts of Mason's mother to protect other children from a similar fate, and he discusses ways for families to keep their children safe.

Co-Regulation: The Basis for All Social Interaction

Linda Murphy, M.S., CCC-SLP, brings her speech-language pathology background and RDI® training to bear on the important subject of establishing a strong social-interactive framework for language learning.

STeP: Structured and experience-based Program for Children with Autism Spectrum Disorder

Clinical psychologist and BCBA, Dr. Vera Bernard-Opitz, discusses an innovative intervention program that is tailored to the specific needs of each individual child.

Getting the Most Out of an Orlando and Disney Theme Park Experience

Journalist and dad to a daughter with autism, Ken Black has well-researched and important advice for families who are planning a Disney adventure.

Quirks and Perks: Perspectives on ASD — Running with a "Torch"

The QUIRKS are not quite as challenging when viewed alongside the PERKS!

In Memoriam: A Tribute to Adriana Loes Schuler, Ph.D.

Doctors Barry M. Prizant, Ph.D., CCC-SLP, and Pamela Wolfberg, Ph.D., pay tribute to this true pioneer in the field of autism spectrum disorders.

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A big thank you to Diane and the entire staff at ASQ - you are all doing such great work and I am thrilled to be a part of ASQ!

Hartley

Hiring a Special Needs Babysitter

I am over at the SPD Blogger Network today giving my advice on how how to find, prepare and hire a special needs babysitter that you will LOVE and more importantly, you kids will want to come back time and time again!  Check it out! :)

Enjoy your week!

Hartley

"Love Poem" By Jennie Linthorst (Happy Mother's Day!)

Love Poem

by Jennie Linthorst

I want to write a love poem

for the mother I am today.

I want to tell her it’s okay to have those days

when it hurts

as in the park today,

when she watched other three-year-old boys

move their bodies with ease,

his parents unaware

of brainpower the body must use

to accomplish such tasks.

I want to write a love poem to this mother

who is the very light in her son’s eyes.

I want her to notice how he leans his body closer to her lap,

one arm always attached,

held on to, protected.

I want her to witness the bond of mother to son,

to witness the perfection

of just that simple thing.

I want her to know that no one in this world

can alter, judge, assess, label,

or destroy that miracle.

I want to write a love poem to this mother

who sits in a chair tonight,

tired and frustrated.

I want her to remember these moments with clarity,

to remember that each day comes and goes.

To remember that the big things and little things

have turned out okay.

******

Thank you to Jennie Linthorst (mom to Graham from the movie Autisic Like: Graham's Story) for allowing me to reprint this poem.  Her entire collection of 61 poems (which are amazing), will be available for purchase this summer.

Happy Mother's Day my friends,

Hartley

How to Tell Your Child He/She Has SPD

I am over at the SPD Blogger Network today giving my advice on how to tell your child he/she has Sensory Processing Disorder. Ideas to help you start this conversation with your child, explain SPD and empower your child to be a self-advocate and self-regulate.

Enjoy your week!

Hartley

Chynna Laird's Birthday (and I've almost missed!)

One of the MOST amazing and impressively awesome women I know, Chynna Laird, is celebrating her birthday today!! If you are RINGO, please go visit her, if you are NOT Ringo, then please visit her blog!

Do you like to win?  You like free? You like HLW3B?  Then sign up to follow Chynna's blog, then leave a comment here on HLW3B!   If 50+ people follow Chynna's blog through Google by tomorrow at 12 midnight PST (and leave a comment on this post so I know you did!) I'll giveaway a copy of my new book Sensational Journeys - due out Fall 2011 from Future Horizons (and it will be SIGNED! 1st EVER!) - and for bonus, if she gets 100 new followers, I'll giveaway TWO BOOKS!

Happy B-day My Friend!!

 

Happy Birthday my friend, I hope the Vodka was good - but *not* too good!  LOL

XOXO,
Hartley

Is Your Child "Under-responsive"?

I am working on a new book that highlights the stories of families raising a child with SPD through personal essays written by the parents. My publisher wants me to add more stories from families who are raising a child who is under-responsive.

Sensory Underresponsive is the THIRD type of Sensory Modulation Disorder - with the other two being "Seekers" and "Aoviders" Specifically under-responsive exhibit signs such as - doesn't feel pain, or hot vs. cold, trouble knowing when to use the restroom, doesn't notice hunger, unaware of surroundings, easily exhausted, hard to gain their attention, doesn't notice food left on face, sedentary, not motivated, etc.

I am looking for a parent (or many parents) that would like to write their ‘story’ – and can do so BY NEXT WEEK.

I can forward you guidelines, information, a sample stories, and the release if you are interested. 

Send me an email if you would like to be part of this project - hartleys (at) steinerigroup (dot) com.

Thanks!
Hartley

9 Ways to Boost Your Child’s Social Skills

I am over at the SPD Blogger Network today talking about how to boost your child's social skills!  Check out my tips to make the most of playdates, role playing and social stories.

Enjoy your week!

Hartley

Interview and Giveaway with Tracy Anglada - Author and Advoate for Bipolar Children

I was reading a blog post the other day that I found through the Child & Adolescent Bipolar Association (CABF) by Tracy Anglada and it struck me -- hard.  I think the simple fact that this woman was raising 4 children, two of which were diagnosed with Bipolar was pretty amazing -- but when I read that her children inspired her to write a book about Bipolar, I knew we had something special in common.

When Tracy heard her children's diagnosis, like so many of us, she wanted a book to explain the illness to her then 7 year old son. That was not available in 2000 - neither was a book for siblings, a book for teachers, or a book that gave these kids a voice.

So she wrote them.

Tracy is the author of Brandon and the Bipolar Bear (also available in Spanish), Turbo Max, The Childhood Bipolar Answer Book, SWIVEL to Success (Bipolar Kids in the Classroom), as well as Intense Minds:  Through the Eyes of Kids With Bipolar Disorder and all of her books can be found on her website.

Tracy says, "That sad state of affairs lit a fire inside of me that would begin what has turned into a decade of advocacy. I'm proud to say that today mothers who are faced with the same news I was ten years ago have far more resources available to them. I'm happy to have been a part of that but I also hope that new advocates will still feel the same fire I did and make a difference for future generations."

As a mom, writer, author and advocate for my own children -- I knew that I needed to talk with Tracy to learn more about her, her family and Bipolar Disorder.  And lucky for me, she agreed.  She even agreed to give away a copy of TRHEE of her books -- Brandon and the Bipolar Bear and Intense Minds and SWIVEL to Success.  (Boy do I wish I could win this one!).

So, for those of you who are parenting, teaching or caring for a child like Gabriel -- with many labels, including Bipolar Disorder -- this one is for you.


------------------------------------------


Hi Tracy! Thank you for joining me here on HLW3B. Can you start by telling us a little about you and your family?

Thank you for having me! I’m the mother of four children – three busy boys and one beautiful daughter. My children range in age from 8 to 18 years old. After two of my children were diagnosed with bipolar disorder, I realized how many resources were desperately needed to help kids with bipolar disorder and to help others understand them. I have spent the last decade helping to create resources for my own children and for others who would benefit from them. That has led to the writing of 5 books, numerous essays, articles, brochures, newsletters and to the creation of the BPChildren website.

How did you know your child was Bipolar? What are some of the early warning signs?

My son experienced his first major depressive episode at the age of 6. It is devastating to watch someone at that tender age go through such a difficult time. While we could clearly see that he was suffering from depression, we did not realize that this was the beginnings of the same illness that had plagued 2 previous generations in his family. While he certainly had some difficulties prior to this time, it was this first depressive episode that made us realize that he needed help. Later, I learned that up to a third of children who have depression may actually be experiencing the onset of bipolar disorder. Other early warning signs include anxiety, poor attention span, excitability, changing moods, numerous physical complaints without obvious cause and difficulty in school. Of course, not every child with these difficulties will go on to develop bipolar disorder, however, these warning signs coupled with a family history of bipolar disorder should prompt a parent to be watchful in case symptoms progress and to seek professional help when needed.

Interview and Giveaway with Dr. Roya Ostovar (The Ultimate Guide to Sensory Processing Disorder)

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's publisher, Future Horizons, was willing to give away TWO FREE COPIES of her book. Check out the bottom of the interview for details on how you could be a lucky winner!

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

Please welcome Dr. Roya Ostovar to HLW3B – thanks for taking the time to talk with me and my readers!

Hello Hartley. First, I’d like to thank you and your readers for the invitation and opportunity to discuss this very important, current, and critical issue. Yours is such an informed and knowledgeable audience on this topic that I really look forward to hearing everyone’s feedback on my book and the information I have provided.

Thank you – I am always impressed by my readers’ knowledge and enthusiasm! I have had the great pleasure of reading your book and love that it offers such a comprehensive look at Sensory Processing Disorder, especially the examples of children in your private practice. Tell me about how you got into working with kids with Sensory Processing Disorder and Autism.

I have been serving children with Autism Spectrum Disorders (ASD) and Sensory Processing Disorder (SPD) for about 20 years now. However, I formally became educated and made a commitment to this field in 1997, when I enrolled in a post-doctoral fellowship program in Neurodevelopmental and Related Disabilities at the UCLA’s Neuropsychiatric Institute and Hospital. Since then I have completely dedicated my work and practice to understanding and helping kids with various developmental issues, particularly Autism and SPD.

How did that experience turn into a book?

I felt compelled to write the book and share my knowledge and experiences with educators and other clinicians, in particular. It was truly heartbreaking to see kids who had either not been diagnosed at all or who had been misdiagnosed and had been given the wrong treatment plan that they were supposedly “not responding well to.”

Reduced Stress Easter (for kids and parents!)

I am over at the SPD Blogger Network today talking about how to reduce Easter stress for your kids - and yourself!  Check out my tips on filling your child's basket, making breakfast, and dressing them for happiness.

Hope you have some sun in your neck of the woods!

Hartley

POST REWIND: What is Sensory Processing Disorder?

Recently I have seen a rise in the number of articles, Facebook posts, and even tweets claiming to define what Sensory Processing Disorder is. This should be good news, and it is -- mostly.  But, some of them are full of misinformation.

Although I am thankful that anyone wants to help spread awareness, it frustrates me personally that these people could very well be doing more harm than good. I have dedicated such a large portion of my life to spreading awareness that will hopefully benefit kids like mine all over our country and arguably the world, that I would really like to see people get good, solid and accurate information. Wouldn’t you?

It is with that goal in mind – the goal to educate and help – that I am taking my personal stab at answering the increasingly popular question, “What is Sensory Processing Disorder?”  My answer, and this article, will be specifically geared towards helping parents with SPD kids prepare a response for the dozens of strangers (and even family members) who might stare or judge us every day.  We are on the front lines of this disorder, and I believe have the highest stake in making sure that the message being sent about Sensory Processing Disorder is complete and accurate.

Now, I’d like to start with a few myth busting points before we go any deeper so we can all start fresh.

“SPD is on the Autism Spectrum” or “SPD is a mild form of Autism” – FALSE. Although a significant portion of kids with ASD do have sensory issues (estimates range as high as 85%), the opposite is not true. Many children with SPD do not have ASD. So, to recap, SPD is NOT on the Autism Spectrum.

“They are trying to get SPD added to the Autism Spectrum in the DSM” -- FALSE. The work being spearheaded by the SPD Foundation and Dr. Lucy Jane Miler is to get SPD recognized as a ‘stand alone disorder’ in the DSM-IV. You can find more info on their site by clicking here.

“SPD just means that a child doesn’t like loud noises” – FALSE. SPD is not just a single symptom, nor is it about 'sensory preferences'.  Children with SPD have sensory differences severe enough to affect their social and academic development.  It is much more complex than 'not liking loud noises'.  And, although children with SPD can avoid sensory input, they can also seek sensory input.

“SPD is the new ADD” – FALSE. I am not going to combat the theory that we as a country (or society in general) have become increasingly consumed by labels, because I agree.  However, I would like to say for the record, Sensory Processing Disorder is real.  Just ask any of the thousands of families that read my blog every month, this is a true health issue that needs to be recognized so that these children and families can get the help they need.

“SPD affects all 5 senses” -- INACCURATE. This is probably my biggest pet peeve. We have 8 senses – EIGHT SENSES!! Touch, Taste, Smell, Hearing, Sight, Vestibular, Proprioception and Interoception. If you are reading anything (blog, tweet, Facebook, article, newspaper, etc) and they say that SPD affects 5 senses – STOP reading. If they do not know at a minimum that there are 8 senses, this person is not an expert.

Now, let’s get to a real and workable definition.

How Did You Know It Wasn't 'Just' SPD?

I receive letters a lot from other moms who are going through what I have been through – and am still going through. Diagnosis, confusion, questioning, school issues – you name it.

But I got one this last week that surprised me.

Remember the Oprah thing? You know, how Oprah had a boy on her show with a mental illness, and because of the way the show was taped/cut it made it seem like this child’s behavior – aggressive, dangerous, and out of control – was all due to Sensory Processing Disorder?

Yeah, that one.

There were so many responses from parents who were terrified that their child’s SPD was going to turn into – that.

But this letter was a little different. Here is what it said,

“To be honest when I saw the recent show on Oprah, I was excited about it. I could see my child in the little boy on the show, especially her rages and thought this is so great! Finally I can show my family and friends what SPD is. Then the next day on blogs and forums I started reading about how upset people were about the miss representation of SPD and that the boy clearly had other things going on. This has lead me to be confused when it comes to my child.”

That threw me for a loop.

What about families like mine – who had a diagnosis of SPD, but clearly there was more going on. What about them?

I am concerned that there are people who need to keep seeking help for their children – even after a diagnosis of Sensory Processing Disorder. And for that reason, I am reprinting my letter back to her.

Her question, “I have read/heard you talk about your son Gabriel, and how his first diagnosis was SPD. And that he later received other diagnosis as well. When you describe him, I recognize lots of the same traits in my child (4 1/2 years old). My Question is; when did you get the other diagnosis or how did you know it wasn’t “just” SPD?”

My response ........

It's Not a Joke!

Happy April Fool's Day!

And more importantly, Happy Autism Awareness Month.

I am over at the SPD Blogger Network today, with my interview with Dr. Roya Ostovar talking about Sensory Friendly Classrooms - what better way to spread awareness of Autism then by asking our schools to become sensory friendly?  I know, genius. 

I also was nominated for an award.

Really, it isn't a joke!  I was nominated for a Circle of Mom 25 Most Inspiring Families award!  How cool is that?

A big fat thank you to whomever nominated me - so cool of you!

So happy April - hope no one plays a joke on you - but if they do, I want to hear about it. LOL

H

Different Enough by Caitlin

Guest post by Caitlin Wray of Welcome to Normal

Last year as part of her First Things First series, Hartley ran a post by Jennie Linthorst, who teaches poetry therapy, and is the wife of Eric Linthorst, maker of the acclaimed film Autistic-like. In her post, Jennie encouraged parents to "write it down" and explore their complex feelings through poetry.

Once upon a time, in what seems like the life of another woman, I was a "real" writer - short stories, poetry, and an abiding faith that I would indeed one day write the next great Canadian novel. Life took me on a different path... but I always believed I would find my way back to it.

A few weeks ago I was having one of those days when I am really struck by how much Simon's "invisible disabilities" position him to have the best and worst of both worlds; people expect him to be "normal" and yet it is an impossible order for him. The words that started to form in my mind, weren't really coherent thoughts or even complete sentences. They were more like... a poem.

So here is a poem that shares my perspective on who my young son is right now. And in writing it, perhaps I've taken a small step toward finding my way back to who I really am...


Different Enough

Different enough

to feel like an alien.

Same enough

To bleed red.

Different enough

To be hurt by your touch.

Same enough

To crave it.

Different enough

To get tongue tied.

Same enough

To have something to say.

Different enough

To be awkward.

Same enough

To know it.

Different enough

To struggle with standards.

Same enough

To be held to them.

Different enough

To garner their stares.

Same enough

To notice them.

Different enough

To be an outsider.

Same enough

To want in.