It's Just Another New Year's Eve by Alysia

Happy New Year!

Ah, the end of the year.  The moment for looking back and remembering the past - the never ending TV specials of  “Top 100 Songs of The Year” or “Top 10 most fascinating people of 2010”.  It's the time when we’re supposed to think about all that we’ve accomplished in the year and make our New Year’s resolutions to improve our future. 

I stink at making those resolutions.  Either I break them in the first week (willpower is NOT a part of my vocabulary) or I make them so weak that become meaningless. Last year I resolved “to remember to take the laundry out of the washing machine before it starts to smell”.  It was a pathetic goal…and I broke it within three days of the new year.

I decided instead to look back at 2010 and see how it this year has changed me.  It has not been an easy one for us.  It was the first full year since my son Howie’s autism diagnosis.  It’s was the first year of him being in a specialized program at school and the first full year of him receiving behavior therapy and weekly OT for his sensory processing disorder.  It was the year we realized that Lewis, our youngest, had a speech delay. 

But it was also the year that I found my voice.  The year that I took on the role of being my kids’ best advocate.  The year that showed me the power of community, both in person and online.  The year I started writing.

So I thought I’d break it down into categories of how things have changed in my life this year:

I became a better mom:  For the first time in eight years as a mother, I think I finally understand my kids - all of them.  Each one of my boys has a very distinct personality.  Understanding my middle son’s autism and sensory processing disorder diagnoses has helped me relate better to each of them.  I’m more patient with all of my boys, and now that I have a better understanding of the issues that come with autism and SPD, I am better equipped to handle the difficult times that come our way.  I am not a perfect mom, nor a great mom.  But I am a good mom and getting better at it every day.

Love Means... by Caitlin

How many times have you apologized for your child’s “behaviour”? Do you find yourself apologizing so routinely, that you question whether you are now apologizing not for your child's behaviours, but for their differences? Apologizing ultimately, for who they are?

In the past, I have apologized to clerks for Simon’s voice being too loud in the grocery store. I have apologized to Simon’s teachers, when he speaks his mind in a literal way that they find offensive. I have apologized for Simon plowing into the walls in his Sunday school classes. I have apologized for Simon not looking at people who are speaking to him, because they think he’s ignoring them. I have apologized to parents on the playground when Simon pushed their kids over.

I had even taken to apologizing to third parties – “Sorry we can’t make it, but it will be too over-stimulating for Simon”.

As my view of Simon’s diagnoses (SPD, Aspergers) have evolved – from “must find a cure” to “must learn to cope” to “must celebrate who he is” – so too has my tendency to apologize for him. Because at some point I decided – this is who he is. What message am I sending to him, when all he hears is his own mother perpetually apologizing for who he is.

Any parent who finds themselves apologizing to this degree for a child, will find that it slowly, insidiously undermines your spirit. And left unchecked, it will surely undermine your child’s as well.

In practice, it isn’t as easy as you might think to get through the day without apologizing for your child’s differences. It becomes habitual, second-nature, a way to show the world that you’re not ignoring your child’s odd behaviours, that you’re not one of “those” parents who really doesn’t bother much with parenting at all. But there are much more meaningful ways to show the world you are a competent parent. Without compromising your child’s self-esteem, or your own. With a little forethought and commitment, you too can quit your addiction to The Apology.

Let’s take the examples I offered:

Give Yourself Props!

Nick and Matt watching the Christmas
boats in Lake Washington.

Christmas was great.  But it is over.

Which always has me recounting the year, and I know that is what New Year's is for, but it is that week between Christmas and New Year's that gets my brain (and mommy guilt) working on overdrive.

It is like Christmas is the party that the year culminates in, and New Year's is the last hoo-rah before it is really over.  By New Year's, I will have had 6 straight days of mentally recapping my year.  This year, I plan to only focus on the positives. 

Usually, I would say, "This year has been OK, but what really matters is that we are moving forward with XYZ therapy, strategy, new medication, and Plan."  This year, I don't want to spend those 6 days focusing on what I haven't finished, didn't do well or could do better. 

That's right.  NO New Year's Resolution for me.  Nope.  Not gonna do it.

Why?

Because parenting kids like mine - living the life we are all living - never allows us to step back and say, "You know what?  I did a damn good job in 2010."

Yes, there are new therapies on the horizon for my boys (iLS and CBT) and you all know that I am making plans for just about everything next year - from Kindergarten in the fall for Matt to whether or not Nick will make it into Highly Capable Program (you know that like 33% of gifted kids have sensory issues?) and the constant dance that is managing Gabriel's complicated regimen of meds, which for the third year in a row, I am thinking this will be the year we get it right....  So, yes, I am thinking of all the things I have to do....

Yet, I am forcing myself to do an all positive 6-Day-Mental-Recap this week.  And I am encouraging all of you to do the same.

Give yourself props!  What have you done well?  What did you do for your kids?  For yourself?  Are you managing a new diagnosis?  Dealing with meds and/or therapy?  Did you join a support group?  Or maybe you just SURVIVED?

You have the rest of the year - no less than 359 days - to beat yourself up about what more you could be doing for your kiddo, but not this week.  This week is all about what you did well.

Not sure you can do it?  Let me help...
I'll start: 

"2010 was a great year!"  My family went on a super-awesome-and-relaxing vacation to Mexico and a hysterical trip to Canada, I had the privilege of launching my book, and adding insanely talented contributors to my blog.  I also changed Gabe's school allowing him to make friends which is a true accomplishment!  I had a ridiculously great time at the SPD Symposium where I spent the first night away from my family in YEARS, hosted a rockin' Parent Dinner (complete with kick-ass giveaways) with Carrie Fannin, and we managed to launch the first ever SPD Awareness Calendar.  I finally got Matt's Asperger's diagnosis and Nick's attended his first NFL football game.  Oh, and I hosted an insanely fun and successful 30 SPD Stories in 30 Days! 

That my friends is what I call an AWESOME year. 

Now it is your turn:  Leave me a comment and tell me what GREAT thing(s) you did in 2010 - big or small, it doesn't matter - so long as you take this time to give yourself the credit you deserve!

Merry Christmas

From my family to yours,
Merry Christmas and
Happy New Year!

The 12 Days of Christmas -- SPD Version

12 Days of Christmas -- SPD Version

On the first day of Christmas,

SPD gave to me

A meltdown Oscar worthy!

On the second day of Christmas,

SPD gave to me

Two heavy blankets,

And a meltdown Oscar worthy!

On the third day of Christmas,

SPD gave to me

Three screaming boys,

Two heavy blankets,

And a meltdown Oscar worthy!

On the fourth day of Christmas,

SPD gave to me

Four spinning Egg Chairs,

Three screaming boys,

Two heavy blankets,

And a meltdown Oscar worthy!

On the fifth day of Christmas,

SPD gave to me

A five hour migraine,

Four spinning Egg Chairs,

Three screaming boys,

Two heavy blankets,

And a meltdown Oscar worthy!

Saving Your Sanity During Bad Weather by Patty

My kids always do better and stay more regulated when we are able to play outside and get some good exercise. This is especially true of Danny, my 7 year old, who is a sensory seeker. The activities that calm him the best are ones that incorporate a lot of heavy lifting or deep pressure, like swimming, bicycling, and riding his Razor scooter. These are all great activities.

In the summer.

But as we live in the Midwest, Fall and Winter often bring weather that prohibits outdoor activity. There is a big difference in Danny’s behavior and mood when we stay inside too much, and especially when we watch too many videos. Over the years, I have come up with several activities that we can do indoors which give my kids lots of good exercise.

Perhaps some of them might work for you and your children.

Get outside when you can

Though it can be pretty cold in the winters here in Illinois, we still try to get the kids outside as much as possible. I know it often takes longer to get them dressed for the weather than they actually spend outside, but it is worth it. Any fun snow activities are good for giving kids deep pressure, like building a snow man, having a snowball fight or making snow angels. Just walking in the snow gives kids lots of good resistance.

Scooter board races in the house

We have 3 scooter boards and often have races in the kitchen (where there is no carpeting and plenty of space). There are so many fun activities you can do with scooter boards, and they are relatively inexpensive.

Here is an article with specific scooter board activities you can do inside.

Let the kids do some typically outdoor activities inside.

I have been known to let the kids roller skate, play ball, and even ride a small bike in the house.If you have the room, and especially if you are lucky enough to have a basement, you may want to consider allowing your kids to take their outdoor games indoors for the winter.

Keeping Calm on Christmas

It’s almost here – are you ready? I might be. I mean, I think I am.

Presents from Santa. Check.

Stocking Stuffers. Check.
Waffle Mix (from Williams-Sonoma, holiday tradition). Check.

Lots of Bacon (that’s not a formal tradition; it just tastes good with waffles). Check.

Kids new Christmas Jammas. Check.
Camera Battery Charged. Check.
Fresh Coffee for morning. Check.
New Kid-Photo-Clad Coffee Mugs. Check.
Diet Pepsi for morning. Check.
PLENTY of wine for *after* morning. Check.

But you know what I still need? A Plan.

Yep, A Plan.

Not just any plan, The Plan.

You know this plan, right? The part of the overall Plan that includes how to regulate your child during the UTTER chaos that will ensue the moment he wakes (assuming he sleeps) on Christmas morning.

Yeah, that Plan. The Keeping Calm on Christmas Plan.

The one that accounts for free time, and visitors, and family, and anxiety, and strange foods, and general chaos.  Do you have one?  No?

Interested in hearing my Plan?  Even if you aren't, here it is:

The Plan

Christmas Eve: Kids are put to bed as close to on time as possible after being WORN out with Proprioceptive input. Yes, if I could have them move the stove and clean behind it, I would. But, something more kid friendly, like shoveling snow, sledding, carrying groceries, shelving books (or Diet Pepsi cans…just sayin’), rearranging the furniture, moving chairs, pushups/pull ups, heavy blanket work (carrying it on their shoulders up and down the stairs), playing Santa (load a ‘sack’ with stuff to carry around and deliver to each room), animal walks, ‘wheel barrow’, crawling work, tunnels (behind the couch works wonderfully), etc. You get the idea. LOTS of proprioceptive input to help them sleep.  Then, obviously, grab a glass of wine and cross your fingers!

Tips for Reducing Christmas Break Anxiety by Chynna Laird

Tips for Reducing Christmas Break Anxiety
by Chynna Laird, SPD author, blogger and momma

Jaimie checks out the new things I’ve written on our kitchen calendar to coordinate with what’s on the one in her bedroom. She sees the big ‘Yay!’ sticker I put on the 17th indicating the last day of school before Winter Break.

“Does that mean Christmas time starts on 17?” she asks.

“Well, it means that your break from school starts on that day,” I say.

Jaimie pauses, her face goes blank. “What are we going to do?”

I give a few suggestions as she scribbles them all down in her notebook that she titled, “Plans For Christmas Break”. She puts everything under either Plan A, Plan B, or Plan C headings. Then she worries we won’t have enough to do and comes up with a few other back up events. I’m exhausted just talking about everything! But I’ve gotten used to this because, as odd as it sounds, it’s calming for Jaimie to know what’s coming ahead and having a plan helps her get through these changes thrown her way.

Jaimie’s tremendous anxiety was what made me realize something was truly wrong. And I noticed it as early as weeks into her life. Jaimie changes when she’s anxious—not just physically but her overall ability to function. She’s extremely reactive, fearful of most experiences, people and events, her sleeping patterns were poor and she obsessed about things. Not just things going on at the time but things that might happen. Her body gets rigid, her shoulders hunch over, she walks around on her tippie toes (more often than usual), she rocks, her face goes pale…stoic…and she completely introverts. Yes, many of these are signs that her body needs some sensory input too but there are times when she is still anxious even after I’ve filled her up with a good sensory diet and squishy massages. Why? Because although anxiety and SPD are synonymous for many, not every child with SPD will have anxiety and certainly not to the level Jaimie experiences.   Each child is different.

Please Don't Put Candles On My Pumpkin Pie

March 25, 2007 was one of the most surprising and exciting days of my life.  The amazing news was first reported to my BFF (who had provided the necessary test) with a phone call that went - verbatim - like this:

Me: Dude, there's two lines.
Her: Holy shit, dude.

I remembered I should tell my husband and there was general happiness all around. And then... we did a little math and cringed.

It was going to be a holiday baby.

Not that I cared for my sake - after seven years of failure and infertility, you take what you can get.  But I was sorry for my child's sake.

See, my birthday falls between Christmas and New Year's.  Two of my cousins' fall a few days before Christmas.  My uncle's: Christmas Day.  I know a thing or two about how much it completely and totally stinks to be a holiday baby.

Seriously, if I never hear the words "Merry Birthday" again it will be too soon.

Other kids got actual birthday parties and actual birthday cakes and actual birthday gifts in actual birthday paper.  If - and that's a big IF- I got separate Christmas and birthday gifts, they were always. Always. AL. WAYS. wrapped in Christmas paper.

And I'm not saying I was a greedy kid who wanted more presents.  We didn't have a lot of money and I was always grateful for what I had.  But it's hard to grow up with any self esteem when the overwhelming message from every adult in your life that the most important day in your young life is, for them, an afterthought.

The Gift of Snow: A Sensory Wonderland by Caitlin

This is one of those rare occasions when all you palm-tree people get to envy those of us whose minivans are encrusted in ice, and whose morning routines are about to revolve around meltdowns over mitts and boots.

While the snow brings with it many, many challenges for our sensitive kids, it also provides unique sensory experiences that can be soothing, energizing, and refreshing. It’s important to show our kids that for every challenge SPD brings, it also brings opportunities. Here are 5 fun, simple, and sensory-friendly snow activities to enjoy this winter:

1. The heavy work of rolling those mammoth balls of snow for the snowmen. Be sure to have 2 crunchy carrots on hand - one for the nose, and one for your oral seeker.

2. That jarring impact of falling backwards - or jumping straight into - a big, soft pile of snow. There is no simpler, or more satisfying sensation for wee seekers.

3. For tactile and fine motor work, heavily tint a few inexpensive squirt bottles with food colouring, and let your kids make paintings in the snow. While you’re there, add some more squeezing-sensory work with this snowball maker (a great stocking stuffer).

4. Oral seekers can get the cold, sweet treat of home-made ice cream using snow from their own backyard (be sure to choose fresh, clean snow):

Into 1 gallon of fresh, clean snow add 1 cup of white sugar, 1 tbsp of pure vanilla extract (or more to taste). Then add just enough milk (or rice milk) to reach desired consistency. Serve immediately in bowls or cones.

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.

FTF: Friendships Lost Leave Openings for Others by Gina St. Aubin

As my First Things First series comes to a close, I am moved by all of the essays that have come before this, but also truly inspired by our last 2010 FTF post.  So, here is December's First Things First article, which was written by Gina St. Aubin In Colorado, Gina St. Aubin is a wife, mother, blogger, and advocate for those with intellectual and physical challenges. You can visit her blog Special Happens, follow her on Twitter as @Special_Happens, or look for her on FaceBook.

For more information about First Things First click here. There is also a list of the previous First Things First articles under the "Guest Posts and FTF" tab at the top -- with the obvious title of "First Things First Articles".   I will be announcing the 2011 FTF writers in just a few days -- LOOK FOR THEM! : )

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

Friendships Lost Leave Openings for Others

by Gina St. Aubin

Who hasn’t looked around and taken an unwitting inventory of their lives; which parent of a special needs child doesn’t do this on a regular basis? In the back of our minds, on days when all seems in order, along with days of disarray, do we not consider which direction we’re going, how many dreams have been reached, mended, rearranged or forgotten? What will our next steps be? Who is in our ventilation system? What supports do we have?

And there we have it. Our supports. Family? Other parents? Other parents of special needs children, neighbors, friends?

Our friendships are probably the hardest to count. The hardest to consider. All around us, in a constant state of flux, it seems our friends and our friendships have changed dramatically. Many who surrounded and supported us through our ‘previous’ or ‘normal’ life may have all but disappeared.

As best I can recall, we thought it was a slow death of friendships, but in reality it was within a head spin. After J’s initial diagnosis, eyes still in a stare of disbelief, we found ourselves robotically picking up, dusting off and beginning the navigation of what was to be our life. Looking up and finding that not many people were standing with us left us feeling beaten. Some wanted to understand, to be involved, then shrugged with the lax of non-investment. Some family spoke in concern, yet displayed ambivalence and disinterest, finally making their distance. We were left with very few supports, very little understanding and an invisible roadmap to a place that shared no resemblance of our initial dreams.

Familiar? Most of us share a similar story of the blossom of our travels. As the road crumbled, forked or waved (depending on your perspective), silhouettes of friendships we held softly, sometimes abruptly, disappeared. We thought they were there, their presence of security and camaraderie beside us until we took a focused look in their direction and there was an open space...a void.

I Have A Little Dreidel (SPD Hanukkah) by Alysia

Happy Hanukkah!

It’s my kids’ favorite holiday, and we’re getting ourselves ready for eight nights full of celebration.  This year, Hanukkah starts at sundown on December 1^st, so we’re quickly changing gears from eating Thanksgiving turkey to decorating the house with dreidels and menorahs. 

For those of you who don’t know, Hanukkah is a celebration of the Jews' victory in a battle to reclaim their temple from the Syrian army.  In order to rededicate their temple, the Jews needed oil to light their “eternal flame” candle.  They thought they only had enough oil to burn for one day.  However, a miracle occurred and the oil lasted for eight days, giving the Jews enough time to make more oil.  This is why the holiday is called the “Festival of Lights” and is celebrated by lighting candles for eight nights.

Any holiday can disrupt a family’s routine.  One that is eight nights long can really change things up.  My son, with all his sensory issues, can’t sit through an organized Temple Tots celebration or anything like that.  So for a successful holiday, we’ll be doing all our celebrating at home, just like I did when I was a kid.  And this year, we’ll be making our Hanukkah sensory friendly.

We’ll be celebrating the eight nights of Hanukkah with all eight senses - the seven senses of sight, smell, taste, touch, hearing, vestibular and proprioception, plus the latest sense in the world of sensory processing: introception.  Here’s how our family will focus on one sense for each night:

WIN FREE TOYS from ASQ and HLW3B

CLICK HERE TO ENTER

I had the great pleasure of writing two articles for Autism Spectrum Quarterly this fall, one of which was a Holiday Gift Giving Guide that suggests gifts that educate and inspire -- while being 'pocketbook friendly'. 

While I was doing the research, and final writing for the piece, I was moved by the generosity of the companies that were included in the Holiday Gift Guide -- they wanted to give away some of their toys!  And who am I to say no to that?

We are talking some SERIOUSLY COOL toys -- those that kids actually want!

You can win one of 2 GRAND PRIZE PACKS worth over $150 each.  They will include:

3 sets of Citiblocs (52 pieces each)
1 Dressing Vest from Fun and Function
1 Make Your Own Gum Kit from Glee Gum
5 tubs of Aroma Dough
1 science kit from Kits for Kids

Yes, two lucky people will get the opportunity to win ALL of those -- tell Santa he can skip your house, because we've got you covered!

Here is a portion of the article that I wrote for Autism Spectrum Quarterly (so you know just why I think these toys are awesome), the other items I suggested can be found inside their Family/Holiday issue, which is available now!

Thankful for You

It is a tradition in our family to say what you are thankful for during Thanksgiving Dinner.  We go one by one around the table, each of us with our own special memories from the year before, and recount the blessings we have each received.  I rehearse with the boys, as this is probably the only reason they even sit at the table (and will get up the moment it is over), and they come up with amazing lists of things they are thankful for; from football to having their grandparents visit, I am always astounded by their insightful words.

I think about what I am thankful for carefully each year, so I am prepared for the moment my turn comes.  So much so, that often it chokes me up during dinner.  And yet, every year, I still find myself attempting to fight off the incoming tears, to no avail.

This year, like so many others, I have much to be thankful for; my book release and awards, the success of Gabriel's new school, all three kids having great teachers, Matthew's success in preschool, Nick's recongition through receiving Seahawks tickets and a writing award, being able to see good doctors, and great therapists, my husband's job and accomplishments in grad school, the continued support and love of my parents, the amazing connections I made at the SPD Symposium just this month and of course first and foremost having a healthy and happy life.

But this year, I am truly feeling overly-blessed to say that I have each of you joining me along this journey.  For all of you who follow my blog, who visit regularly, or just occasionally, who are new, or are old timers, for those who comment and for those who lurk, I am equally proud to say that you are here with me.  None of us want to be on this journey alone, me included, and each time I read a new comment, or see a new follower, I am grateful to know that not only am I not alone on this journey, I am in GREAT company.

So, this year when I sit at the Thanksgiving table, I am going to start with how thankful I am to have all of you.

Happy Thanksgiving to you and your whole family -- may you all have MUCH to be thankful for!

Warmly,
Hartley

SPD Symposium Wrap Up (3 of 3)

Dr. Lucy Jane Miller PhD, OTR/L signing books.

If you haven't red the first two posts, I encourage you to start there -- they are below this one.

5:30am hit again.

This time, I was not so eager to get out of bed. I was plotting in my head how to sneak out of the conference to take a nap. Logistically, that was harder than getting my three kids to three different schools every day, so it didn’t happen.

But as I squished my now bruised feet back into my heels for a third day, I did have one plan: Find time to talk with Dr. Miller.

I arrived at the hotel once again and was greeted by the now highly anticipated breakfast buffet, which I supplemented with some hot tea and honey. I was tired, my throat was scratchy (from talking too much, I know, you’re shocked) and I was afraid that the lack of sleep was catching up with me by way of a cold. But, this day had some great speakers, and I wasn't going to miss them!

Standing room only for Dr. Stobbe's talk -- first
time I had heard someone talk about development
over the life span that actually applied to my son.

I listened to Dr. Gary Stobbe’s lecture on Autism and Sensory issues across the lifespan – and I have to say it was so incredibly nice to hear someone talk about life as a whole. Not just the transition times: Preschool, high school, adult hood – but to talk about my child as a whole being. It was wonderful, and he had a PACKED house. Dr. Stobbe has a charming way about him, he speaks with true heart and an obvious understanding of those he works with. He told many anecdotal stories, but my favorite was a local 16 year old with Aspergers who is interviewing colleges. This young man’s mother was talking on the phone with a representative from MIT, and she felt that she needed to be honest about her son’s diagnosis so that they knew what to expect, “My son has Aspergers, so I would need to know you can accommodate that.” To which the man at MIT laughed out loud and said, “So does half my department!”  Now I know where to send Matthew.

SPD Symposium Wrap Up (2 of 3)

Award Winners with Dr. Miller  (L to R):  Lori Frankhanel,
Lucy Miller PhD, OTR/L, Diana Henry OTR/L, and Barry Stein, PhD.
Thanks to Brian Mengini for the photo!

If you didn't read yesterday's post, start there -- it is below this post and can be found by clicking here.

5:30am Saturday

No cooking = AWESOME.

I was up and off again! One of the coolest things about the three days away from the house was not having to cook. I know, that seems trivial or even cliché, but walking into that hotel to find a beautiful spread of fresh fruit, pastries and these adorable little yogurt/granola and fruit parfaits had me considering a permanent move. They were amazingly tasty!

The conference was at capacity: Over 350 attendees in a packed ballroom. And the coolest part of Saturday morning, was having Dr. Lucy Jane Miller speak.

If you haven’t seen her, I highly recommend you do. She is incredibly easy to listen to, a great and exceedingly rare combination of mastery of information and personable delivery. The audience laughed and related to her immediately. Someone I aim to model my talks after.

Saturday’s full house lecture favorites included Dr. Stephen Glass, Seattle based Neurologist, as well as Diana Henry, OTR/L.

Diana and Lori

Another highlight was the awards that the SPD Foundation gives out – Lori Frankhanel from SPD Canada won for the Advocate of the year! Give her a shoutout on Facebook and big congrats! And did I mention how incredibly sweet and down-to-earth Lori is? A true pleasure getting to know her!

But, by far the most incredible thing from all of Saturday was having the opportunity to speak to the group (yes, all 350+ people, and no panic attack) about my 30 SPD Stories in 30 Days Awareness Event and Fundraiser and present the check directly to Dr. Lucy Miller. WOW.

Seriously, WOW!

SPD Symposium Wrap Up (1 of 3)

Marla, Hartley (I hate this photo of me...), Katy and Carrie
Special thanks to Brian Mengini for the photo!

 

Last weekend was an incredible whirlwind of fun, excitement, education, laughter and connection. I cannot do it justice in one blog post, so I am breaking this down into 3 parts.

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

I got up at the crack of dawn on Friday morning, close to 5:00am. For the record, this is too early for me. I am not a morning person. BUT, on this day, I was.

I was happily the first out of bed, and showered in near darkness while my husband slept. I had this strange little twinge of working-mommy confidence. The roles were reversed. And I liked it.

After dressing in clean and nice clothes (an oddity after being a SAHM for so long), and packing the last of my toiletries for the 30 minute drive to the conference (yes, I stayed in a hotel), I woke my husband.

“Jeff” I whispered, “Jeff, can you help me carry these things downstairs?” I asked. I really just wanted him to get up and say goodbye to me. Selfish, I know.

He got out of bed, and grabbed my suitcase, while I listed the other things in the house that needed to go in the trunk too: My box of books, the crate of giveaway items, the flyers for the SPD Parent Dinner and of course, a 12 pack of Diet Pepsi for the hotel-room fridge.

He obliged.

I made it downstairs, grabbed my purse, my camera, and walked to the car. It was parked in the driveway, with the trunk open so I could reach in for a cold Diet Pepsi. I took two. I stood there in the dark driveway, in heels and my coat, hands full and looked at my husband standing in his sweats on the porch.

And I had a panic attack.

Putting the Fun in Dysfunctional by Patty Porch

Last month, on the way home from my nephew’s baptism party, my husband said, in a shocked tone, “That was the best family party we have ever been to. The kids were amazing and had so much fun! I wasn’t even stressed out or worried about the kids getting over stimulated. What just happened?”

Throughout the rest of our 3-hour car drive home, we discussed what had made this particular party so much fun. We also compared it to other parties that were not nearly so pleasant. Parties that ended in tears and meltdowns, parties that we had to leave because one of our kids was just too over stimulated to handle. Parties that I swore would be the last I attended because things had gone so poorly for Danny and/or Charlotte.

We realized this particular party in September had been so successful because we have some family members who are 100% committed to making family gatherings pleasant for my two SPD kids.

Though my family has always been supportive, they haven’t always known how to help. So what changed? As I think back over the last few years, I can come up with a lot of little things that helped open up the communication lines between my family members and me which helped my family—who love my kids unconditionally—gain a better understanding of our sensory issues.

So, I have a few pieces of advice, things I have learned the hard way, things you may find helpful during these challenging holiday times.

The 813 Mile Car Trip by Alysia

It’s that time of year again.  Thanksgiving.  It’s a tradition in my family that we all go to my mother’s house in Vermont for the holiday.  In the past 30 years, there have only been three times when she didn’t host the big turkey dinner.  Usually, there’s about 30-35 people there – my immediate family, aunts, uncles, cousins, second cousins, friends of second cousins…you have a connection to our family and you’re welcome at the house. 

Making 250 mile car trip is always somewhat of an adventure for us.  It’s hard for any kid to sit that long, but a four year old with sensory issues can make the car ride incredibly hard.  One year, he asked for a “hug” for an hour straight.  Factor in food breaks, toilet breaks, coffee breaks and sensory breaks and a four hour ride can sometimes turn into six.   Oh yeah, and diaper changing breaks for the two year old too.

Leaving the comforts of our house is somewhat of a challenge.  Besides my son’s sensory issues, he has a food intolerance to all products with corn in them (corn syrup, corn starch, dextrose, etc.) so we travel with our own food.  Additionally, my husband is a vegan so we need to make sure we have things that he can eat as well.  All this makes eating anywhere but home a little dicey. 

However, we’ve made the trip enough now that I know what to do ahead of time to get us ready, and what to pack to make the journey successful.  I thought I’d share our packing list with you, in case you are also getting ready for a big holiday adventure.  I’ve based our list on the car game “I’m packing my grandmother’s trunk and I’m bringing…” something based on each letter of the alphabet. 

Holiday Giveaway from Soft and HLW3B!

The only thing better than FREE is when you get something you absolutely love - that is FREE.

Are you ready for the most amazing, hands-down useful, sensory-friendly, OMG you didn't, Squeeeee, giveaway you have ever seen?  I thought you might be.

Grab a handful of mistletoe because you're gonna want to kiss me for this one!

Soft Clothing and Hartley's Life With 3 Boys bring you our first annual Holiday Giveaway!

2 Grand Prizes will be given (one for boys, one for girls), and will each include the following sensory friendly items, which focus on fine motor development, dramatic play skills, sensory integration, creative expression, auditory exploration, and of course, fun! Whatever holiday or season your family celebrates, there is something in this stocking for someone you love!

Quilted Train Stocking from Pottery Barn Kids (boys prize)

Quilted Angel Stocking from Pottery Barn Kids (girls prize)

This is Gabriel Making Sense of School, by Hartley Steiner (That's me!!)

SPD Awareness Calendar (for sale at http://www.sensoryplanet.com/)

Glitter bouncy ball from Pottery Barn Kids

Alex Finger Crayons

Tangle Textured Jr

AKU Sensory Ring

Melissa and Doug Jumbo Paint Brushes (set of 4)

Melissa and Doug Deluxe Fuzzy Make your Own Monster Puppet

Wonderland Eco Friendly Rainbow Sound Blocks

Mood Therapy Putty

Soft Seamless Sock 2-pack

One complete Soft dressy look for girls OR

One complete Soft dressy look for boys

ENTER HERE!

That Didn't Take Long by Michelle

My name is Michelle, and I'm a web professional.  And one of those Type A OCD overachiever nut jobs.  And a writer.  And mother of Bear, an amazing little boy with SPD.

I tell you this because if you put these things together, you get, in a nutshell, how I ended up with the honor of being a guest blogger on Hartley's site.

This really started for me in October of 2009, about 5 minutes after the OT evaluator told me my son had Sensory Processing Disorder and that I should start reading about sensory modulation.  Needless to say, I set Google on fire... and was sorely disappointed at the lack of information.  (I'm not saying it's not out there, I'm just saying at the time the SEO for SPD wasn't up to snuff.)

I searched for weeks on every imaginable combination of terms and came up with limited data (did I mention I also have a degree in biology, dreamed of being a doctor and have clinical experience? I wanted real. information.).  Then I stumbled across an SPD mom on Twitter who told me about a relevant site.  I looked... and was sorely disappointed.  This particular homemade SPD site was gushy and rambly and poorly designed. There was no way any reasonable parent would read it and feel like they were getting reliable information about their child's disorder.  I wanted something our pediatrician could take seriously.

The Power of You and I by Caitlin Wray

Since I never have time to listen to my mp3 player anymore, I decided to pass it along to Simon, especially since I’ve read they can really help kids on the spectrum control their auditory issues. Simon absolutely LOVES it. He dances like he’s competing on Randy Jackson's Dance Crew in our front lawn, showing off for cars that drive by (not too sure I’m really comfy with that particular habit). Right now, his two favourite songs are these:

Now Available!! SPD Calendar 2011

Words can't express how incredibly proud I am to say that the

Hope & Help

Sensory Processing Disorder Awareness

Calendar 2011

is NOW AVAILABLE!

BUY IT NOW!

Proceeds go to support the SPD Foundation and Children's Institute for Learning Differences (CHILD), two amazing non-profits dedicated to chidlren with special needs.

Advice for Special Grandparents

Helen, her husband Stuart, and all of their grandkids!

With the holiday season upon us, I can feel the tension and anxiety building all around me.  What is everyone worried about?  They are dreading visting family. 

One of the biggest complaints from those I speak with, is that their extended family doesn't understand the needs of their child.  From sensory issues, to need for routine, predictability, table manners, food choices, and a thousand other things, the holiday season is hard on our kids.  And what do us parents want more than anything?  Understanding and Support. 

Here is my amazing mom's advice for all of the grandparents (or aunts, uncles, great-grandparents...) out there who struggle to understand what our special kids (and WE as adult children) need from them:

There but for the Grace of Gabe
By Helen Nickelson, proud Grandma of Gabriel, Nicholas and Matthew.

I often wonder what kind of a grandparent I would be if Gabriel wasn’t in my life. Would I be the “perfect” grandparent? Meaning the one who had a preconceived idea of how everything would be. “Perfect” vacations, birthdays, holidays…you know, the ones where the kids, parents, grandparents did whatever they wished, all of the time happy, able to enjoy the adventure of changes in schedules, habits, foods, all the while dressed perfectly, with perfect manners and smiling faces? 

Luckily (and I mean that) I’ll never know. Because of Gabriel’s challenges – and now Mathew’s, we are a family affected by SPD, autism and a few other diagnoses. But, my life with my child and her children IS “perfect”; at least perfect by my new definition.

Perfect now means we are together whenever and wherever we can be, doing nothing, or anything that allows us all to be comfortable, calm and happy. That doesn’t always look like what I had imagined. Instead, it may mean not visiting some places or participating in some activities because it would be too chaotic. It may mean on holidays some of the children may be at the table barefoot, wearing sweats, or standing instead of sitting, or walking away if needed. It may also mean one or more children may forgo the turkey in favor of a PB sandwich (on white bread with no crust, of course). It may mean no candles, because of fear of fire or any number of other “oddities”, but it will always mean spending time & sharing memories with the most wonderful children in the world….MY “perfect” grandchildren.

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.

Join Me at the SPD Parent Dinner



CLICK TO ENLARGE



Getting To Know You by Alysia Butler

When Hartley asked if I would be a regular contributor on her Hartley’s Life with 3 Boys site, I was humbled and honored.  I started writing about my family’s journey with sensory processing disorder because of her, and I have learned so much from all the information she provides here. 

I sat up late at night trying to figure out the best way to introduce myself and my family to everyone.  I wanted to tell all her readers that I know what they are going through, that while the details of our adventures might be different, I understand the daily struggles that we all encounter.  I couldn’t figure out a good way to share all that.

I could start with “Hi, my name is Alysia and I have a son with sensory processing disorder”.  But that didn’t quite feel right.

I could tell you that I’m a stay at home mom with three boys, ages 8, 4 and 2.  My four year old was diagnosed with sensory processing disorder at age 2 ½, and with autism spectrum disorder in December 2009.  Still, that just didn’t tell the whole story.

But then it hit me.  Why not introduce myself through the Dunn Sensory Profile*?  You know, that multi-page form that so many of us have filled out for our schools, our occupational therapists and our early intervention coordinators. I have filled it out so many times I can almost do it in my sleep.  I figured I could pull out a couple of the questions and share my answers from two years ago with everyone. 

Thanksgiving Table Manners

I hate eating with my kids. Really, I do. Our meal times usually push me to the edge of sanity. And with Thanksgiving just weeks away, I am reminded that I will be eating with my kids in a formal setting with other people.

Perhaps the turkey is less nervous than I am. Why? It isn’t for the reasons you may think.

I have long ago gotten past the worries about what food my kids will eat, or whether they can stay seated at the table, or their inability to be hungry at meal time, preferring to ‘graze’ all day. But, what I haven’t gotten over is their utter lack of table manners.

Yes, table manners.

I hear you – you think I shouldn’t worry about table manners that I perhaps have bigger fish to fry. But let me tell you, bad table manners is a pet peeve of mine that I just can’t let go. Somewhere in my mind I have attributed the presence of good table manners with a gold star on my ‘Mommy Chart’. I try to let it go, really, but the holidays bring it back in full force. Like my own personal race against time to get my kids to ‘brush up’ before anyone else is here to witness the horror.

My oldest son Gabriel is the worst. He actually has set the bar so low that it is hard for me to concentrate on how bad the table manners of my other two are. Gabriel knows our dinner rules; he can recite what the table manners are, in nauseating detail, answer a table manners quiz, and remind his brothers (and me) to mind our table manners should we falter, but, he cannot for the life of him follow them.

And it drives me to the point of madness.

FTF: Disabled x2 by Leslie O'Donnell

Here is November's First Things First article. This article comes from Leslie O'Donnell. Although Leslie’s background is in disability activism, psych education & special-ed teaching, Leslie O'Donnell now finds herself in the full-time career of special-needs parenting. The mother of a neurologically disabled toddler, Leslie asks the tough questions and offers the tougher answers.

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Disabled x2

By Leslie O'Donnell

Two weeks ago, I woke up at 5:30am in excruciating and unfamiliar pain. The doctor on-call that night listened to my symptoms and thought it sounded like kidney stones. What I heard was, “You will have to pull a still-exhausted Jamie out of bed, and torture him and everyone else by dragging him through a long visit to just the sort of medical facility that he has really bad memories of and phobias about. This will potentially lead into him getting to leave only by being torn away from you, who will have to stay there getting treated, therefore NOT BE THERE TO BE HIS MOMMY.” Suddenly, my pain levels and diagnostic prospects mattered a whole lot less. Well, they did to me, anyway. My husband, devoted daddy and husband that he is, was having none of it. “Just how expendable do you think you are?!?!” he not-quite-asked me.

It’s funny. You never expect it to be flattering if your husband looks at you as if you were the most infuriating idiot in the world. As it turns out, it can be.

Testing showed that my kidneys were fine, but my gallbladder had had just about enough of me. I had to resign myself to all the infinite lamentable ramifications of NOT BEING THERE for my child, that a special needs mommy is a little too good at thinking of. Furthermore, while they just barely managed to remove the organ laproscopically, I had to resign myself to a one day emergency surgery that still managed to turn into three days and two nights in the hospital. Still, now that I’ve been home for a week, Jamie has mostly recovered, and I can again hug him silly without immediately screaming in pain or throwing up, it is somewhat easier to remind myself that by putting him through those three days without me, I was able to avoid a more intensive version of the surgery which would have kept us apart for far longer. More importantly, I was able to make sure, at least on this account, that Mommy would remain with him, in a more general sense, to get him through all the other traumatic surprises life can hold in store.

FTF: Finding My Inner Self by Diane Renna

This is October's First Things First article, but because of the SPD Awarness event, it didn't get posted!  But no worries, here it is!  This article comes from  Diane M. Renna, author of “Meghan’s World: The Story of One Girl’s Triumph over Sensory Processing Disorder,” Child Advocate, Reiki Master Teacher, Co-Founder of the Sensory Enriched Playgroup & Parent Learning Program©

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Finding My Inner-Self
By Diane M. Renna

I can vaguely remember my Dad telling me to, “just go take a warm bath and relax and read a book.” It was about eight years ago. I could barely sit still myself and I thought, “There is NO WAY I would be able to relax in the tub; let alone read a book in it.” I tried…I think I lasted five minutes tops. I am sure the book was also related to how I could help my children to boot. I would often hide-away in the bathroom with my hands held over my head…praying for patience and help…”that this was not my daughter… please help us find help and get through this…I would help others in return.” I was overwhelmed and wanted to help my daughter. My husband, Lorenzo, and his partner, Diego, had a pizzeria 45 minutes away and they worked all day and night. He would help when he could, but mostly everything fell on my shoulders. I was lucky enough to be a stay-at-home mom. However, there was not as much information about Sensory Processing Disorder (SPD) then as there is now. I often had to drive long distances to get help. I was blessed to find therapists that worked with me and taught me what to do.

At this time in my life, my daughter was diagnosed with severe Sensory Integration Dysfunction (SPD) and she was attending an integrated preschool. We were starting our family journey to wellness. Meghan’s younger brother, Michael, also was diagnosed with a milder SPD and it did not affect his everyday life as dramatically as it had affected Meghan’s. Let’s face it…I was hyper and always on the go myself. I realized I most likely had SPD myself.

I devoted all my time and energy into helping Meghan and Michael. I read, learned, played, and grew as a person along the way. I applied the same traditional and alternative therapies/techniques for myself as well. Soon, we all started getting better. Believe it or not, I was even taking long Epson Salt baths and sleeping well. It took a long time, but it was worth it. If it wasn’t for other parents and therapists dedicated to helping children with SPD and Autism Spectrum Disorders (ASD) kids/families, I don’t know where we would be. I never dwelled upon labels…in fact…most of what helped Meghan and Michael…were therapies/diets/techniques designed for children diagnosed with ASD. We did have fun too…we painted in the backyard; jumped on the trampoline and swung on the swings…a great sensory diet is fun for all!!

Getting Our Photos Taken (by Dana Napoleon)

Have you seen the photos that Dana Napoleon has done for Soft Clothing?  I know you have -- they are the incredibly cute ones with the kiddos in the old car?  If you have been under the sensory-free rock this last month, you have to check out the links!

I saw them on Facebook (and everywhere else) and wanted to know more about the photographer - a woman I had actually come in contact with once before on a listserv here in Washington.  So, our Facebook conversation via comments went like this:

Me:  I love your photos!

Dana: Thank you!  I could take your boys' photo!

Me:  You don't want to do that. LOL  They will be horrible -- Matt's a runner.

Dana:  We could do it here by my house, it is fenced!

Me:  Is there any standing water?

Dana:  No. 
Me:  OK!

With that I convinced my husband to accompany me and all three boys on the 1 hour and 15 minute trip to Tacoma.  Yes.  In their 'good' clothes. 

What was I thinking?

I'll tell you -- I was thinking that if this amazing photographer could actually capture some great photos of my kids, it would be well worth it.  We hadn't had professional photos in an outdoor setting since Matt was 11 months old.  And that photo of the tree boys still hangs in my family room.  Jeff and I joke that should we divorce, we won't argue over who gets the kids -- but rather who gets the photo of the kids.  So, I was looking forward to this opportunity!

What I wasn't anticipating is Dana having a Polar Express Train set up on a train table in her backyard that Matt bumped right into when we arrived.  Nope, not expecting that.

Matt loves trains.  Getting his photo taken?  Not so much.