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: