On the Road to Self-Regulation: (Part 1)

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

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

My oldest son Gabriel is a “sensory seeker.” He needs deep pressure (proprioceptive) input so that his body can stay calm and organized. He also seeks vestibular input (that which is related to balance and movement). As a toddler he would climb to the very tippy top of the jungle gym and then stand on it. Because of his increased need for sensory input, I have acquired a virtual arsenal of therapy tools to help him meet his needs. And with my youngest son Matthew being diagnosed with Asperger’s just days ago, having these tools at my disposal has become even more vital.

For Gabriel, I am happy to report that the time and effort I have put into meeting his sensory needs over the past few years has paid off. Gabriel is learning to find adaptive ways he can independently get his sensory needs met, like asking for what he needs versus throwing himself on the ground or spinning through the house, knocking everything down in his path. Matthew, on the other hand, is just beginning this journey and I learn a little more about his needs each day. But, with Gabriel’s successes under my belt, I am optimistic that Matthew will achieve similar results with the help from the same therapy tools his brother benefitted from.

If you have a child that seeks sensory stimulation and/or benefits from deep pressure input, and could use some tools to help him or her learn to self-regulate, here are some tricks of the trade that have helped my children. (But, please remember to use common sense and consult your child’s physician or OT before trying any of the therapy tools / techniques below):

Keeping Up the Pressure

Spio Suit. I have found a fabulous company that has created a lycra suit that children can wear under their clothes to give them “grounding” all day long. The theory behind this is that the gentle pressure provided enables your child to know where his or her body is in space while engaging in normal day-to-day activities. This helps him or her to maintain an appropriate arousal level while participating in social interaction, writing, and sports activities. The lycra suit comes in three different styles: The full body suit (essentially like a girl’s one-piece bathing suit or a wrestlers leotard); a long pant (great for motor planning activities); or a long-sleeve shirt (exceptional for writing / fine motor activities). For additional information log onto: www.spioworks.com

What is iLs? Interview with Dr. Ronald Minson

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 mostt 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!

Finding the "Just Right Challenge" by Patty

Over the years, my family has missed out on many typical childhood activities. We have never gone to an amusement park, we often decline birthday party invitations, and we rarely travel. We also often skip church parties, forgo YMCA breakfasts with Santa, and choose not to enroll our kids in many activities.

Sometimes I wonder if we should get out more. I wonder if maybe I am sheltering my kids too much or if I am not making enough effort to get out.

The reason we skip most activities is because of the sensory craziness that comes with them, and I am never sure how Danny and Charlotte will handle it. Sometimes, too, it just doesn’t seem worth all the trouble to prepare the kids and ourselves for the possible ordeal.

And, if I am being perfectly honest, sometimes I can be a bit anti-social. While I enjoy being around other people, I don't particularly care for large groups; the sensory stimulation isn't just hard on my kids, but on me as well.

We aren’t hermits; we do take the kids to social gatherings. It’s just that we are pretty choosy. Still, I have to admit, we refuse many, many invitations.

This past summer, I met a woman, Alicia Hart, an autism advocate who founded an Adventure Club in our town. This was a group for families of kids with autism who regularly met at the park to engage in science experiments, art projects and musical performances. Danny and Charlotte loved it, as did I.

To end the summer on a high note, Alicia gathered almost 100 people—kids with autism and their families—for a bowling party.

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.

Experts by Patty Porch

Approximately 6 years ago, I found myself taking a trip to my local library. Normally, this would have been an enjoyable outing, especially because I had left my son with my husband; I had free time to browse and relish the quiet. But this was not a normal trip to the library. I was on a mission to find some answers.

Earlier in the week, after a particularly gruesome play date in which my toddler son, Danny, had ended up screaming uncontrollably, I broke down in my car. I had no idea what had set him off, and I didn’t know why he always acted so differently from other kids his age. I knew something wasn’t right.

No one would listen to me, but I knew in my gut that something was wrong.

So, I went to the library desperately trying to find a book with some answers in it. I read books on strong-willed children and parenting techniques, but nothing fit.

I didn’t know where to turn, but I distinctly remembered thinking, “Oh, if someone could just tell me exactly what is wrong and what to do about it, I would never ask for another thing. Ever!”

Once Danny was diagnosed with SPD, I was filled with enormous relief. Finally, someone could tell me what to do. I had some answers. Answers, at last!

Since then, I have sought answers wherever I could find them. I have read every book, magazine article, and website I could find, desperately hoping for answers. And each of these resources has helped. A lot.

But I never found the one SPD Bible that could give me every piece of information I needed. Worse still, some of the advice in these sensory books didn’t work for Danny. Much of it I needed to tweak and adjust for his personality and his sensory needs.

Throughout all this, I often found myself wishing Danny had a more clear-cut disorder, one that had one simple cure or treatment.

The thing is, Sensory Processing Disorder is anything but clear-cut, a fact that has been brought home to me more than ever, now that my 5-year-old daughter has also been diagnosed with SPD. Her sensory issues and how she reacts to them are vastly different from Danny’s. So, what has worked well for Danny doesn’t always help Charlotte. It’s so much a process of trial and error.

Music Lessons

Do your kids love music?

Mine sure do.

It was probably 4 years ago now, and I was driving out of our subdivision with all three boys in the van – Gabe was in Kindergarten, which makes Nick 2 1/2 at the time and Matt around 6 months. From out of the back I hear the boys talking about playing musical instruments.

“Mom,” Nick starts, “Can I have a drum set?"

I grin, “Maybe someday.”

“Can I have a Tuba?” Gabe interjects.

“No.” I laugh out loud at the image of my son, much smaller than a Tuba, attempting to play it.

But, that planted the musical seed for all of us.

Flash forward four years, and I am contemplating putting Nick and Gabe in Piano lessons. Why Piano? Because it seems that might be the most convenient to actually attend. And, Nick tried Drum lessons at three different locations, but he was just too young at the time. Not to mention, I don’t want a drum set in the house, but could live with a keyboard. I bet you’re shocked that I am not interested in a drum set, huh?

My husband is very musical – or at least what he might lack in ability is greatly made up for by enthusiasm. Although he isn’t belting out original songs, he enjoys playing the guitar (he began teaching himself about two years ago and he has gotten pretty good), and played the drums for 10 years during his school days. It is fair to say that Jeff is a music lover. And it is guaranteed that if my husband is home, there is music playing.

I, on the other hand, am against any added sound in the house during the day, so the enjoyment of music tends to be mostly had on weekends, and mostly in the backyard.  Which is kind of a bummer.

Come see me!

Where are my California moms?!

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

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

Love to see you!

Hartley

SPD Diagnosis -- Now What?

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

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

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

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

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

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

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

2. Establish a Routine immediately if not sooner.

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

The Power of Proprioception

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

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

“Harder.” He says quietly.

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

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

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

School and Summer Planning

As this school year is ending for all three of my kids, it means I have to do a lot of planning on my part – planning for next year, planning for summer – and as it turns out, I don’t have a crystal ball, so it is proving to be a little challenging. Just a little.  But, I do have a plan.  Don't you always have a plan?  That is SO part of being the mom, huh?

Since I have all of this on my mind, what I am doing, what I am planning, I thought I would share with you all -- because I have a suspicion that you are doing the same thing!  Let me break it down for you:

Matthew (Preschool)

Matthew finishes his first year of developmental preschool (technically half a year since he started in December), and any fears I had last fall about him progressing past his IEP and being kicked out of Developmental Preschool have been squished. Matt is not neurotypical. He is definitely marching to the beat of his own drum, and I suspect more and more that he has Aspergers, which I may look into having diagnosed this summer.

Swimming Towards Summer

Many children love swimming. Mine are no exception.

Gabriel, since he is a true seeker, has loved water since before he could even say ‘water’. He spent hours in the backyard sprinkler, kiddie pool, hot tubs, bath tub, and shower and in every way he could, he attempted to become one with the water.

It came the time, that our schedule would allow (finally therapy appointments have slowed, and flexibility has increased, and Matthew has grown up – a little) for him and Nick to take swimming lessons. Matt too, but he had a cast at the time I signed them up, so we skipped his lessons (but I have signed him up for next session during the week while his brothers are at school, which promises to provide me with a plethora of blogging material).

We signed the boys up at the YMCA, through a regular group class, and off we went.

Today was the last in a six week series.

Yet the first I attended.

Why?

Because no matter how ‘grown up’ Matthew is at this point, he is still a true pain in the ass to take anywhere he has to wait and can’t follow his own agenda.

But Jeff is in China – or Korea – or maybe Japan now. Wherever he is, it isn’t here.

I prep Matthew with a numbered list of what steps come when (visual schedule), and make the plan for him to watch his brothers with ‘expected behavior’ before we return home. I can’t put Matt in the YMCA child care center because he has been kicked out so many times, it isn’t worth it. For either of us. So he comes with me.

He didn’t do too badly. And yet, he didn’t do so hot either.

Aside from throwing Rusty (from the Thomas series) into the pool – which Gabriel grabbed and tossed back – and then pinching my face, followed by slapping me across the face – he was an angel.

Is it bad form to scream at your kid and throw him in the pool at the Y (it was the shallow end, don’t be too scared)? Yeah, I thought so.

Instead of throwing him in the pool for pinching and slapping me, I gave him joint compressions, and squeezed him a bunch, and took the brunt of his ‘zerberts’ against my face (his ridiculous sensory seeking behavior that escalates as he does which makes me on the verge of a sensory meltdown of my own).

In the mean time, between Rusty's near drowning and surviving blows to my face (and ego), I watched the boys swim.

I was surprised to see that Gabriel’s motor planning issues are still as prevalent as they have been in the past.

Yes, they are considerably better than when we started OT nearly 5 years ago. But, still he had trouble.

He loves to swim, and just beams while he is in the water so it wasn’t as if other people would notice the trouble he had, but I did. I am hyper vigilant like that.

Gabriel takes everything so literal – ‘put your face in the water’, the instructor says, for a belly float. But Gabriel literally just puts his face in the water, not past his eyebrows – he doesn’t hold his head even with his body, as the instructor intended. He is my literal thinker for sure! But the teacher doesn’t notice this the same way I do. Which is just fine for YMCA swim lessons.

Nick won’t put his face in the water – tactile defensiveness – he HATES the feeling of water in his eyes, or god forbid, in his ears. That is a battle even in the shower. But he too did well.

Actually, they both love the water, but have no true swimming form.

My favorite part of the experience was being in the women's locker room (never mind the dirty looks over having my three boys in there) and watching a woman walk in with her two daughters.

The youngest girl, probably 4-5, immediately pinched her nose shut and began, "It stinks in here; let's leave!" Her mother acknowledged it and began moving quicker -- meltdown coming? Hmmmm.

Once their things were picked up, she handed the girl a sticky-wiggly-jelly-like substance in the shape of a large tarantula. Hmmmm. Fidget toy?

It is always reassuring to me that us SPD moms are everywhere. EVERYwhere. And I still have to genuinely hold back from yelling, "HEY! Does your kid have SPD! Awesome! So does mine!" Not everyone is as excited about SPD as I am.

The boys aren’t enrolled in swimming for next session because we are doing Flag Football.

Nick’s FAVORITE thing ever, he has done it for the last two seasons, and now Gabriel has decided to play.

I am a little leery about it – team sport, comparison to his peers, etc – but this is definitely something he is ready for in his own mind, and I truly think sometimes (at least as he gets older) he is the definitive decision maker on whether or not he can do something – he won’t let his acronyms define him.

And he has practiced a great deal with Nick, and had the opportunity to observe for two seasons. Both of those will probably help considerably!

They start Football on April 10th. I’ll keep their ‘stats’ here on my blog for all to see.

Spring Football season will take us to summer when Gabriel will be attending summer school – for sure – probably at the private school we are checking out over spring break.

I think he will be going there for summer school, even though we haven’t officially tried it yet, because I got Adoption Support to pay the cost of it ($1800).

Do you know what Adoption Support is?

If not, here is my plug for adopting from Foster Care (or at least one benefit):

When you adopt through foster care, your child can qualify for Adoption Support – which is financial help for the child through his/her lifetime in the way of services related to their special needs.

In Washington part of the criteria for qualifying is that the child has to be a minority, part of a sibling group, or have special needs (or all of the above in Gabriel’s case) to qualify, but when you do qualify (all negotiated by you -- attorneys are not normally used), you get medical coverage, and in some cases, can apply for and receive additional support.

I asked Adoption Support for help with care for Gabriel over the summer (last summer was AWFUL and I don't want to have a suicidal child on my hands again), and after they turned me down, I was able to give them more information and get the care covered. I literally cried when they told me we’d get the support.

Helping to keep Gabriel stabilized through summer is A TRUE GIFT for our entire family, not just Gabriel. But when I told Gabe that he would FOR SURE get to go to summer school (this is NOT camp), he jumped up and down in my office and shouted with delight, "Woo Hoo! Yes!" Complete with a fist pump.

So, as you might guess, I am excited about this school even if just for summer.

Hope you all are finding the sun, and maybe even getting to take a uncoordinated dip in the pool!

H

Sensory Tools Made "Cool" by Fun and Function (Aviva Weiss)

I came across this amazing new website, http://www.funandfunction.com/, that offers great sensory toys and tools for your home or therapy center (for all you OT/PTs out there!) and was even more excited to find out that the owner/found is not only an Occupational Therapist herself, but has a child with Sensory Processing Disorder (not to mention 4 other kiddos including a 6 week old--ah, hello supermom!).

She has offered to tell us more about her family and her business, and is offering HLW3B readers a 10% discount off their purchases. A discount on therapy toys -- hmmm -- almost better than a new handbag, huh? LOL Here we go!

Hi Aviva! Welcome to HLW3B. I am very excited to talk about your website and how it is making the lives of special needs kids ‘cooler’, but first tell me a little about yourself. How did you come to start a business that caters to kiddos like mine with Sensory Processing Disorder?

Thanks, Hartley for this opportunity! I was inspired to create Fun and Function when I learned my own daughter was challenged with Sensory Processing Disorder, and I was turned off by the high prices and unaesthetic products that she needed for therapy. I began designing my own line, and realized many other parents also wanted an alternative to clinical-looking and costly products.

There are so many amazingly fun and innovative products on your website, but I am very intrigued by the “Exclusive” items you have—especially the dressing vests that look like Police officers and Princesses (I totally want the Police Officer one—very cool!). Where do you find such great items for your site?

I worked with a fashion designer to create the dress-up vests, which we call our Magical Apparel line! It's magical because all children can play dress-up together, and those who need sensory input can place weights in the interior pockets, without missing a beat. The easy-to-grasp buttons, snaps, and zippers offer practice dressing too. As an occupational therapist and mother of five young children, I often come up with too many ideas that I would love to bring to fruition. The hard part is waiting for the ideas to become a reality! Many of the exclusive products are designed and manufactured by Fun and Function. To add to our offering, I also spend a significant amount of time searching for other innovative toys and products which stimulate development and function in children of all abilities.

I commented on your Facebook page where you were asking for input from SPD parents about what kinds of products they want to see in your upcoming 2011 catalog (can't pass up the opportunity to put my two cents in); what a smart idea to ask the people who USE these items at home what they want! Can you disclose any secrets about upcoming new items? I am dying to know!

Our goal for 2011 is to offer a wide variety of products that are selected and voted for by our parents, therapists and of course, children. I might like something from my perspective as an occupational therapist and mom, but there are many other solid opinions out there and I want to hear them. In general our approach to all feedback and ideas is “bring ‘em on!” It makes us better at what we do.

In terms of new products, we are working on some very, very cool social/emotional games with content that is user generated. You and your readers can contribute to the games by joining the discussion on our Facebook page and share what situations trigger emotional reactions from your child. We are also developing a line of functional wearable chewies ( I’ll leave the rest a secret) and calming, comfortable clothing that is designed and voted on by children on http://www.bykidsonly.com/

I hear often from friends and fellow special needs moms that they wish there was a local place to purchase these kinds of items. I was impressed to see that you are not only in some retail locations, but that you offer the ability to become a Consultant for your products. Becoming a Consultant sounds like an amazing opportunity for parents like me to make some extra money while sharing and selling products that directly contribute to the well being of other special needs families! Please tell me more about how Consultants help your business, and how some of my readers may benefit from becoming one.

We recognize that people love to touch-and-feel the products before committing to purchase, and we offer this opportunity through our Consultants. There's an added benefit too: when our Consultants demo the products at events like house parties and in service presentations at schools, families and professionals are able to connect and share their knowledge and tips of what's worked for them.

Some of our consultants have day jobs as therapists and many are moms. They're attracted by the extra income of selling products that they really believe in. From a business perspective, our Consultants give us another touch point to understand the range of customer needs, and we gain a bigger footprint across the US.

You can find more information at about how to become a Consultant by clicking the link and reading about it on our site. I would love to have more amazing people join the Fun and Function team!

Thank you Aviva for taking the time out to share with us about your family and your business. Can you tell me where to connect with you? Facebook? Twitter? And also, I hear you are willing to give HLW3B readers a discount?! Tell us about that too! :)

Thank you! It is great meeting other parents with similar passions! You can find us on Facebook at facebook.com/FunandFunctionFans and on Twitter @FunandFunction We are thrilled to offer a 10% discount to your fans just enter code HLW3B in the first discount coupon box upon checkout. Have a great day!

_________________________________________

A special thanks to Aviva again; another sensational mom helping sensational kids! She just welcomed her 5th child into their family too, so congratulations on little Sam and another BIG congratulations on the work you are doing to make special needs "cool"!

I hope you will all be able to benefit from the discount code, and take a close look at the great and unique products that Fun and Function has to offer. I am thinking the boys might just get those adorable Magic Dressing Vests in their Easter Baskets, what about you?

H