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.

Spring Sensory Giveaway from Soft Clothing and SPD Blogger Network

Did you see this on the SPD Blogger Network?  Just wanted to make sure you didn't miss out on such a great giveaway.  : )

From the SPDBN site:

"We are so pleased to be co-sponsoring an amazing Spring-tacular giveaway with Soft Clothing! We are giving away, two beautiful soft sided Easter baskets from Pottery Barn Kids, filled to the gills with sensational treats for your sensory kiddo!"

Here's what you can win!

Puffy Easter Basket (Chick) Pottery Barn Kids (boys prize)

You don't want to miss out on this fabulous Spring Sensory Giveaway!

Puffy Easter Basket (Rabbit) from Pottery Barn Kids (girls prize)

"I'll Tell You Why I Can't Wear Those Clothes," by Noreen O'Sullivan
Soft Seamless Sock 2-packVestibular WedgeSensory Body Sock
Alex Toys Monster Bubbles
Alex Toys Sack Racing: Frog and Monkey
Squiglet Fidget Bracelets
One complete Springy Soft look for girls OR
One complete Springy Soft look for boys

ENTER HERE

Obsessive much?

Guest post by Patty of Pancakes Gone Awry


When my son, Danny was diagnosed with high functioning autism a year and a half ago, the doctor asked if he had any "special interests." I knew what he was asking; I had heard and read plenty about "passions" or "obsessions" or whatever you want to call them. I know they are relatively common among children with autism.

At the time, I couldn't really identify one specific passion of Danny's. And to be honest, I was a bit relieved to know that there was one autism criterion that my son did not meet.

Shortly after that doctor's visit, Danny discovered Legos, and our whole world has been engulfed in a cyclone of those pesky multi-colored blocks. To say that Legos have become Danny's "special interest" would be a gross understatement.

The kid is completely, 100% obsessed.

He talks about them, plays with them, reads about them and surfs the Internet to find more Legos to covet. His face lights up like a Christmas tree when he sees the Legos logo or hears someone talking about them.

One time, while walking home from school on a sunny day, Danny asked me, "Wouldn't it be cool if when it rained, Legos came from the sky instead of rain?" That pretty much sums up his attitude towards Legos.

I'm quite certain that my son thinks about Legos a good portion of the day. In fact, judging from his conversations, I would have to surmise that Danny thinks about Legos at least 80% of the time.

The other 20%? Well, that would be when the kid is sleeping.

Not only can Danny spend a great deal of time talking about the wonders of Legos, he assumes that the rest of the world's population is equally smitten with the things. When someone's birthday is coming up, Danny wants to buy that person Legos. It doesn't matter if we're shopping for his 65-year-old grandma or his 1-year-old baby cousin, Danny is convinced that Legos are the perfect gift.

If he's not playing with Legos, then he's surfing lego.com, looking at all their products and playing one of their many games. Other times, he reads Lego books, including his newest favorite:

The Lego Star Wars Visual Dictionary. My mother thought we were crazy buying that for him. "It's a dictionary, Patty," she said. "Will he really read it?"

Oh, yes, yes he will.

To be honest, I have struggled a bit with how to handle Danny's development of a special interest. Although I speak of his love of all things Legos fondly, I haven't always felt this way. I have worried that this obsession makes him somehow more "autistic" and less social. I have been concerned that it would hamper his ability to fit in.

And I wondered what I should do about it. Should I try to help him branch out more? Limit his access to the Legos, so he plays with other toys or talks about other topics? Should I just encourage it and enjoy the fact that my son can quietly entertain himself for hours with his new interest?

Eye Surgery and Asking for Help

This last week I have been rather MIA.  My apologies.

My husband is away on business in Europe (this time without me, boo!), and I threw my back out last weekend, which meant I was laying in bed.  In pain.

Then on Monday, my good friend Megan - single mom to a darling 8 year old boy with Autism - came to stay with me for a few days while she recovered from her cornea transplant surgery.  Yes TRANSPLANT SURGERY. 

Having Megan here was great, but getting her here took some convincing.  (I hear you gasping - "What?  An autism-mom who doesn't know how to ask and receive help?!!" - shocking, I know.)

You see she had surgery a week (or more) before she came, and after her surgery she actually popped the stitches out (OMG talk about pain!), and had a second surgery. 

How did she pop the stitches?  By doing too much.  By continuing on with regular life and not putting her own needs first because she didn't know what to ask for - what exactly she needed people to do for her.  And when she thought about it, it sounded ridiculous to ask someone to feed her dog - or her son.  She could do those things herself, and did, but it cost her.  And I can relate - I have been in that same boat. 

Ok, not the eye surgery boat exactly, but I've needed help and was uncomfortable about telling people in plain English what I needed. 

So when I sat down to write a post for Friendship Circle last week, that was on my mind - asking for what you really need when you need it.  And accepting that help.

Here is the post I wrote for them last week - I hope you will all take a step back and think about how many times you have needed help, and refused to ask.

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I have many friends – some who have special needs kids and some who do not – and often times I think they are at a loss for what to say or do for me during one of the many crises our family has.

When my son is struggling at school, or when my husband and I are fighting because we cannot seem to find a single second alone to speak about something other than the kids, or like last Spring when we were forced to hospitalize my oldest son, I find myself on the phone with one of my girlfriends venting, crying, and just letting it all out.

You Can't Always Get What You Want by Alysia

You Can't Always Get What You Want
by Alysia Butler of Try Defying Gravity

I have seen the promised land of therapy rooms.

I have visited these amazing basements equipped with swings, trampolines, a trapeze and quiet tent spaces.  Rooms filled with sensory balls and body socks and noise canceling headphones.  I have stood in the doorways of these spaces but have never crossed in. 

Because it's not my house.  Thou shall not covet thy neighbor's therapy room.

I'll admit it.  I'm envious of what they have. 

I want that.  How different our lives could be if we only had...all that.

This popped into my head at our most recent IEP meeting for my 4 year old son Howie.  Every morning when he gets to preschool, his amazing aide takes him immediately to the school's OT room.  Each day they assess what he needs at that moment.  Maybe it's time in the swing.  Maybe it's the trampoline.  Or maybe it's just quiet time doing a puzzle.  After 10 or 15 minutes in the room, he has built up his sensory inputs enough to be able to make it through the morning routine.  And if needed, he takes more sensory breaks during the day.

While this works for him now, the time that he's in the OT room takes away from his time in his preschool inclusion classroom, and he misses some of the daily routine.  The conversation around the IEP meeting table turned to kindergarten, where this type of "before school OT time" might not be as possible.

My husband spoke up.  "What if we did some of the sensory input work at home before he goes to school?  Would that get him ready for the day?"  The teachers were all in agreement that this was a wonderful idea.

It sent me into a panic.  How on earth could we do any of that at home?  With my two other sons around?  And with what equipment?  And where?

As I spiraled into "No, we can't" land, my husband decided "Yes, we can."

Can you say role reversal?  I think you can.

My husband took it upon himself to spend a morning with my son and his aide to watch their routine in the OT room.  He observed the teacher as she walked Howie across a balance beam.  He took notes while Howie lifted coffee cans filled with beans over his head 10 times before he jumped on the trampoline.

And he came home with a plan.

Let the Kids Be Kids

The funny thing - or maybe the best thing - about having a blog for this long (damn near 3 years) is that I can look back and see patterns.  Patterns of my kids' behavior and patterns of my own reactions.

I have come back to this post a dozen or so times in the last two weeks.  "Just Be Mom or Dad" was its original title, but really it is about letting kids be kids.

So, because I am feeling a little hyper-focused on what the kids need to be doing (before Kindergarten next year, before therapy stops for the summer, before whatever...), I have needed this post as a reminder to settle down.  And when I feel that way, it is usually the case that one of you all is feeling the same way.  Hence, the repost. 

And the wish for all of you to have a good week - one that has less to do with running to therapy, aruging over homework, or squabbling over whether or not today is a 'hair wash day' - and more to do with enjoying each other. 

And now the post....

"Let The Kids Be Kids"

Just because your child is challenging, doesn’t mean that you aren’t still his parent. Spend the weekend with your case-manager, social-worker, education-consultant, medical-scheduler, worry-wart, and future-predictor hats on a shelf, and just be your child’s parent for the day. Reconnecting with the parts of our kids that are the most fun, special, and awe-inspiring often gets left off the never-ending to do list in the hustle of the day to day management of all of their needs – choose this weekend to honor who they really are and let them be kids!

My Readers ROCK! {Giveaway Announcement}

I've said it before, and I'll say it again -

YOU ALL ROCK!

In all seriousness, I started this blog years ago to share my story - my life struggles raising a complex child.  You have seen me through diagnosis after diagnosis, challenges, embarrassment, joys, more chaos, and of course, successes - you have been true friends to me!

Thank you for supporting me and giving me over 7500 votes at About.com - but more importantly....

Thank you to the 11,000+ visitors that have come to

Hartley's Life With 3 Boys so far this month. 

Thank you to those new followers who have 'joined me'

by RSS and Google!  Welcome! 

Thank you to the 300+ new people now following me on twitter.

Thank you for the HUNDREDS of comments here - we are a community!

And thank you to the women who lend their talents, their stories

and their passion to HLW3B every month -

Patty, Alysia, Michelle and Caitlin!

What we have done these last two weeks is spread awareness of Autism, Sensory Processing Disorder, Bipolar, and all invisible disabilities to TENS OF THOUSANDS of new people.  That is a win by any definition - and I couldn't have done it alone! 

To say thanks, I am putting together one helluva a giveaway celebration to let you all know how awesome I think you are -

Hartley's Favorite Things! 

(details to come!)

But now, I want to share some of the comments from Facebook after I posted there yesterday (don't we have fun there?!):

On the Road to Self-Regulation: Part 2

Continued from Part 1 ...

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Movin’ and Groovin’ for Vestibular Input

Mini Trampoline. This is a common sensory tool for many families; however, if you don’t have one, just know that you don’t have to spend a fortune on a “therapy-grade” one. I own the Jumpsmart™ Electronic Trampoline because of its triangular shape, ergonomic and intuitive handle bars, and integrated sound system. Just think, by having a trampoline that counts up (or down) for your child, he or she can get quality movement with less hands-on guidance from you, because all you have to say is, “Go do 100 jumps!” or “Can you jump for an entire song?” The Good News: All of that jumping provides great vestibular input, and making sensory activities fun encourages self-regulation. For information on the Jumpsmart™ Trampoline, and other great products for sensorimotor input, log onto: www.digginactive.com

Egg Chair. The people at IKEA deserve some kind of “Genius-Idea” award for this one! Not only does this chair offer great vestibular input because it spins smoothly and safely without any exposed parts, but also because it closes up to create a quiet “hideout” inside. This is a great way for kids to retreat and regroup after a long day. (A cautionary note: Be sure to check with your child’s physician or OT regarding the advisability of spinning.) IKEA also offers this at a reasonable price ($79 US) and in multiple colors. www.ikea.com

Hammock. Of all the ways to get vestibular input, this has to be the most relaxing. When we first got our hammock, all three of my sons would climb in on top of my husband and jostle for position. Unlike a traditional swing, the hammock allows for side-to-side motion, thus providing a different kind of vestibular movement. Gabriel prefers the side-to-side motion over traditional back-and-forth swinging both in therapy, and at home. You can find a variety of hammocks for sale, from many retailers. My advice is to choose a freestanding hammock with quality construction and frame because if your kids are anything like mine, it’s going to get a lot of use! Widely available.

Rocking Chair. We have two rocking chairs in the house, a small child-size one that my father built for me when I was two, and a full-size leather La-Z-Boy® that fits nearly all of us at once – or at least it did when the boys were younger! Rocking can have a calming effect on Gabriel’s sensory system. Reading and rocking with the boys is a nightly activity [pastime???] at our house, and most often we will use a heavy blanket while doing so. The combination of simultaneous vestibular and proprioceptive input [Does that work?] offers a strong dose of needed sensory input and calms Gabriel, and often Matthew, down almost instantly. Also, our kid-size rocking chair offers my sons the opportunity to keep their bodies moving on demand; encourages self-regulation; and keeps their bodies active while they watch a movie or TV. Widely available.

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

How to Tell Your Child He/She Has SPD

A young couple walked into a support group meeting I attended the other day; holding hands, exchanging glances, and looking worried and nervous. I quickly offered them a seat next to me, and listened closely when it was their turn to introduce themselves. They had two young boys, one four and one two. Their oldest was newly diagnosed with Sensory Processing Disorder and they were very confused. I could relate immediately – that was me five years ago.

Before long I was sharing information on resources, support organizations and what books to read. I even made suggestions on to how to help their child eat better and get a haircut without melting down. But then, the husband asked me a question I just wasn’t expecting: How do I tell my child he has Sensory Processing Disorder?

Great question.

As I began sharing with them the benefits of talking openly about SPD with their child, I thought about how crucial understanding SPD was to my son’s development, self-regulation and self esteem.

Someone wiser than I once said, “If you don’t label your child accurately, someone else will inaccurately.” And my experience has proven this to be true.

I do understand the argument not to tell our children what is going on with them – that somehow the knowledge of their disorder will give them ammunition to behave badly and blame it on one acronym or another. But for me, I am not as worried about how they can benefit from the label, but rather how the label can benefit them.

If your child had diabetes – would you not explain how they needed insulin or how too many carbohydrates would cause them harm? Of course you would. If your child had Celiac Disease, wouldn’t you teach them from day one how to respond when offered a muffin? Of course you would. Just because Sensory Processing Disorder is a neurological disorder – invisible to the naked eye – doesn’t change the need for our kids to learn how their bodies work, and what they need (and what they should avoid). Perhaps the ‘invisible’ nature of their disorder makes it that much more important they know what is going on.

I believe knowledge is power – and if this is true for adults, it is equally true for kids. After all, if you aren’t told what is going on, how can you understand it, let alone gain a mastery of it? We as parents spend a great deal of time and energy learning about our kid’s diagnoses. Once we get that information solidly in our grasp, we use it to advocate for our kids with teachers, doctors and professionals, whenever we feel it is needed. The kind of power that stems from knowledge is key to our children’s ability to advocate for themselves – to feel in control of what is going on inside of them. I believe that when our children know what their bodies need and how to get it in a socially acceptable way, then they can learn to self regulate and that is what all SPD parents want for their children.

That kind of mastery is only achievable through acknowledging and understanding Sensory Processing Disorder.

FTF: "Up and Screaming" by Sarah Hoffman

This year's First Things First series of guest posts is kicking off with a great post from Sarah Hoffman!

Sarah Hoffman is the mother of a pink boy and a girl whose favorite color is yellow. She writes for national magazines, newspapers, and radio, and speaks publicly about raising her gender-non-conforming son. She uses a pseudonym to protect the safety of her family.

If you haven't visited Sarah's blog, you are missing out.  Her humor, insight, and charm make her writing a true joy to read. 

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"Up and Screaming"

by Sarah Hoffman

At birth, Sam was blue—but the doctor was not worried. He pinked up quickly with oxygen and gave a hearty cry. In the hospital, he seemed normal, with only a few small oddities: he picked up his own head an hour after he was born, and he refused to stay in even the military-crisp swaddle enforced by the three nurses who tried. Within moments, he broke free of the blankets, flailing his arms and crying.

The real crying didn’t start until the ride home from the hospital—Sam howled all the way. After that, there was no car trip when our first-born child didn’t scream from the second he was put in his car seat to the second we removed him. He cried, too, in the stroller, the swing, the bouncy seat, his crib. Most of the means new parents have of soothing their screaming infants were lost to us, and so we held him. And sometimes he cried even then.

Our doctor told us Sam was healthy, merely “sensitive and intense.” The next doctor concurred. The doctor after that told us Sam had a behavioral problem and we needed to set limits with him. He was five months old.

Sam would only sleep at night if we held him on our chests, and even then only in 15 to 30 minute stretches, from which he woke up screaming. My husband Ian and I took turns holding him while the other slept.

Crazed with sleep deprivation, I called my therapist, who told me that I needed to hire a nighttime babysitter. I couldn’t do it—I couldn’t hand my baby to a stranger when something was wrong, when he needed me. Which meant that Ian and I quickly became incapacitated: unsteady on the stairs, unable to work, unsafe to drive.

My therapist said: It’s OK for Sam to be up in the night screaming. He’s a baby, and he will get through this. It’s not OK for you to be up in the night screaming.

I couldn’t, in my sleep-deprived haze, see the reason in this.