Saturday, March 26, 2011

We Are Not Alone

I ordered Chinese food today at our local place, and while I waited for my food, a lady walked in to place an order.  She was the kind of lady that I would assume demands attention wherever she goes. A few words immediately sprang to mind when I saw her: classy, beautiful, poised, elegant.  She ordered her food in a quiet, polite manner, and than sat down next to me on the bench to wait for her meal.

As I sat there waiting, I did a little silent inventory of myself.  I was wearing old jeans, ratty gym shoes, and my husband's t-shirt.  My hair was in a messy pony tail, and I was wearing a little mascara and some lip gloss (OK, chap stick).  I slouched in my usual style on the bench, feeling every one of those extra pounds I desperately need to lose.  Then I began to take inventory of her.  She was tall and skinny and carried herself like a model.  She had a beautifully tailored jacket on, long skirt with matching top, gorgeous boots on her feet.  Her skin was flawless, with perfectly applied make-up--even lip stick.  Her hair was swept into a low twist at her neck without a single fly-away strand.  Her jewelry coordinated perfectly to her outfit.  Her long nails were polished without a chip.  As we sat there, silently waiting for our food, I began to feel quite self-conscious about my appearance!

Then she sighed.  Not one of those "oh, I'm so hungry and tired and now I have to wait for my food" sighs.  No, this was more "The weight of the world's on my shoulders" type of sigh.

My heart immediately went out to her, because I know that sigh.  It's the sound you make when you feel like life's defeated you.  I glanced over at her again.  And this time I saw something more.  I saw the circles under her eyes that no amount of make-up can fully cover.  I saw the way she pursed her lips together as she rubbed a well-manicured hand across her temples--a hand that was shaking slightly.  I realized that I was not all that different from her--that on another day, in another place, that could be me.  That has been me!  Because, no matter how much I try to present a perfect facade to the world outside, I too have days when the problems of this life have beaten me down.

People ask me all the time, "How do you do it?"  How do I raise two children with unique needs?  How do I run back and forth for therapies and counseling appointments and still have time to breathe and maybe do the grocery shopping?  How do I not get overwhelmed by it all?  And I don't really know how to answer that question.  If I was honest, I would say that I sometimes I just don't.  Sometimes I literally crawl back into bed and sleep the day away.  Other times I walk out of the house and try my hardest to forget about everything at home for at least four hours.  And many more times than I would like to admit, I just sit down and cry out of frustration and fear and anger and sadness at what this life has given me.  Not all the time, mind you.  Most of the time, I just do what I have to do, because it's my life and I accept what I've been given.  But sometimes...well, that's why I knew what that woman's sigh was saying even before I looked again.

I never answer that question honestly, because that would involve letting someone look a little closer, and see the person I really am, not the one I present to the world.  Kind of like the woman in the restaurant.  I don't know what she was dealing with, but when I looked beyond the presentation she wanted everyone to see, I saw a sad, tired person who was struggling inside with something.   I wondered briefly what I could say to her, but then my food was ready.  As I left, I caught her eye and gave her a smile, hoping to convey in just one smile that I understood exactly how she felt.

There's a song on the new Jars of Clay album that they've been playing on the radio here a lot.  The first time I heard it, I cried.  The lyrics told me exactly what I need to hear.  Read the words to this song, and know this: that we all suffer, and we all need help once in awhile.  And we're all holding on to the lies this world tells us--lies that say we need to be perfect and present a strong front in the face of adversity.  Lies that say we need to be self-reliant and take care of our own problems.  We're all wearing robes that society tells us we must wear.  We're claiming names that God never intended us to wear, names like Superhero or Failure.  But guess what?  We're not alone.  None of us is.  I'm not alone, and the woman in the restaurant is not alone, and you're not alone in whatever your facing either.  It's OK to let each other see who we really are.   It's a lesson I'm trying to absorb.  Maybe the next time someone asks me how I do it, I'll tell them the truth.

Shelter by Jars of Clay
To all who are looking down
Holding on to hearts still wounding
For those who've yet to find it
The place is near where love is moving
Cast off the robes you're wearing
Set aside the names that you've been given
May this place of rest in the fold of your journey
Bind you to hope
You will never walk alone

In the shelter of each other
We will live
We will live (Never walk alone)

We will live
We will live (Your arms are all around us)

If our hearts are turned to stone
There is hope we know the rocks will cry out
And the tears aren't ours alone
Let them fall into the hands that hold us
Come away from where you're hiding
Set aside the lies that you've been living
May this place of rest in the fold of your journey
Bind you to hope
We will never walk alone

In the shelter of each other
We will live
We will live (In the shelter)
In the shelter of each other
We will live
We will live (You will never walk alone)

If there is any peace
If there is any war
We must all believe
Our lives are not our own
We all belong

God has given us each other
And we will never walk alone

Enter to Win a Give-Away from Soft Clothing and the SPD Bloggers Network

If you know my kids at all, you've picked up on the fact that they are very "picky" about their clothing.  Squirrel prefers dresses with tights, or comfy pants (think yoga pants) with snug cotton shirts.  Munchkin refuses to wear anything with a zipper or button.  He lives in sweat pants and t-shirts.  Squirrel's very particular about her sock seams lining up perfectly, and will only wear a certain kind of underwear.  Munchkin could care less how his socks go on, but wants to wear his shoes on the wrong feet because he likes the extra pressure they provide that way.   Both kids hate tags in their clothes.  Munchkin won't wear a sweater or sweatshirt, because it "chokes" him.  Squirrel hates collars because they "itch" her.  Munchkin really hates wearing a coat, especially one with buttons instead of a zipper.

My kids aren't being picky.  They both have some measure of tactile defensiveness, though they each show it in different ways.  This means that certain textures on the skin can actually cause them pain, distress, or just discomfort.  They can't ignore it, or deal with it--it will take over their thoughts until the problem is fixed.  

So I have learned to supply them with clothing that they will wear.  Yes, it means that on Christmas Munchkin wore black cotton pants with an elastic waistband and a red t-shirt instead of the cute Christmas-themed 3-piece sweater set a friend gave us for him.  And it means that Squirrel goes to school everyday with her collared uniform shirts driving her batty. And I'm sure that strangers are tempted to call Child Protective Services on me because my children are walking outside with no coats on, while I am bundled in hat, scarf and gloves and it's 30 degrees out.  But for the most part, we get along fine with our wardrobes--we've learned to make it work for us!  

So, anyway...I discovered Soft Clothing Company awhile back, and have purchased several items from their clothing line.  My kids love their clothes.  They are all made of soft cotton, with flat seams and no tags.  Their socks are awesome--if they made them in adult sizes,  I'd buy for myself!  They are offering a great give-away just in time for Easter, along with the SPD Blogger Network.  Follow the link below to sign up for a chance to win a great Easter basket from Pottery Barn Kids, filled with many cool toys and books, and a Spring outfit from Soft Clothing!

Thursday, March 24, 2011

Diagnosing the World

I'm posting today at the SPD Blogger Network, about trying to help the kids in my life get the help they need, without overstepping my bounds.  I know other teachers struggle with this too.  But me?  I refuse to sit back and do nothing when I can no longer help a child myself and they need more than I can get them.  It's made me unpopular with some parents, but for the kids I have helped, it's all worth it!

http://www.spdbloggernetwork.com/

Saturday, March 19, 2011

Hot Wheel Tracks and the Path to Good Behavior

I was talking to the van driver at the day care this week about Munchkin's behavior on the van after school.  It's getting out of hand.  He hits the other children with his seat belt and his book bag.  He screams at the top of his lungs.  He kicks the driver's seat.  He slides out of his booster seat onto the floor (and ends up choking himself on the seat belt in the process).  It's really bad--the driver's had to pull the van over many times lately to deal with this behavior.  I understand why he acts this way (he's worn out from school, full of pent-up energy needing to be released, and overwhelmed by the noise level in the van); but I also understand why it can't keep happening.  I've been in the car with Munchkin when he acts like this.  It's really hard to concentrate on the road!

So, we've tried to come up with a behavior plan to stifle these problems.  The driver tried putting a movie in the DVD player.  Sometimes that works, but not always.  Then I made a simple picture reminder card--it said "No Feet On Seat" with a picture of feet propped up with a line through it,and "Quiet Voice" with a picture of a finger on the lips.  The driver wouldn't use it consistently, though, so it wasn't effective.  So I came up with a plan to use good old-fashioned bribery to straighten this out.  I told Munchkin how he was expected to behave on the van, and said I would buy him Hot Wheel tracks after 10 good days on the van.  He was elated (he's been coveting those tracks for awhile now, what with his "tracks obsession" and all).  And, sure enough, he behaved perfectly on the van the last two days of this week.

So, as the driver and I were talking, he told me, "You know, if he can behave for a bribe, then that just shows me he should be able to behave everyday."  At first I was really angry about that.  I mean, Munchkin cannot behave everyday--he just can't.  Even a neurotypical child cannot behave every day!  But take a child whose social-emotional skills are equivalent to a 3-year-old's, add a 7 hour school day of trying so hard to hold it all together, and then throw in a hot van with a kid on each side of him, a TV going, and kids trying to talk to each other, and he just. can't. hold it. together.  But then I started wondering...

Can he do this everyday?  Is it really necessary to reward good behavior, or should we just expect it, or even insist on it?  He does ride the bus to school every morning without any of these problems--but then again, each child has their own seat, and there's a bus aide.  Come to think of it, there are lots of things Munchkin does well at school or in therapy, that he will not (can not?) do at home or at day care.  Is this because school and therapy are both very structured, whereas home and day care are not?  Many people have told me that he "plays" me.  And it does seem true that his behaviors are more intense for me than for anyone else.  Am I too lenient with him, because of his difficulties?  Or am I just more tolerant and understanding about those difficulties?  Is he more at ease with me, and able to "let loose" around me because he feels comfortable?  Or am I just exhausted by all his meltdowns, so I give in to him in order to avoid another one?!

Talk about difficult parenting!  There's no parenting book out there that can help me.  They are all written with a neuro-typical kid in mind, and most of what they recommend does not work with Munchkin.  It's all trial and error here, and constantly changing.  What works for awhile will undoubtedly quit working soon after.  We've tried it all, and then, at the end of our rope, we try it all again.

Sometimes I feel like I make too many excuses for Munchkin.  I allow his diagnosis to become a crutch to support his inappropriate behaviors.  Not intentionally, of course!  I think that, in an effort to be sensitive to what he's feeling sensory-wise and to understand when he's over- or under-stimulated, I automatically assume he's acting a certain way because of these things.  Maybe sometimes he's just acting poorly because he can!  Or because he wants his way.  Or because he's stubborn, willful, and even just disobedient!

The problem is, how do I know the difference?  Until I figure this out (which I pray happens before the pre-teen years!) I guess I will just keep trying something else, until we find what works.  And right now, the Hot Wheel tracks seem to be working!

My only solace in this whole situation?  I know every single parent out there struggles with their child's behaviors.  My situation may be different than yours, but we're all trying to figure it out as we go!

Sunday, March 13, 2011

Stress Less

Seems I’ve been bombarded lately with words about STRESS.  Two weeks ago, we had an in-service at work about stress management.  There was a special guest last week at my monthly Special Needs parent group who talked about how to have less stress in your life.  And this weekend I attended a conference where one of the workshops I was put into “randomly” was on stress.  Someone is trying to tell me something here.  I’m just too stressed to get the message.

So, in an effort to be healthier, live longer, and take better care of my family, I am committing myself to de-stressing my life.  Starting….now.  Here are the steps I will take to make this happen.  And since I am great at saying these things, and bad at actually carrying through on them, all of you can hold me accountable.  Just don’t push too hard…I might punch you.

Seven Things I Will Do To De-Stress My Life:

1.                   Cut out caffeine.  No, really, I will.  In my 20’s I never touched the stuff.  Then I had kids and couldn’t get through the day-after-the-sleepless-night without a little boost.  Then it required a big boost.  And now I can’t live without this drug of mine.  So I know the only way I will succeed is cold turkey.  WARNING to those around me:  Giving up caffeine is likely to cause more stress before it relieves it.  So I will be a little cranky for the next, oh, two weeks.
2.                 Eat more fruits and vegetables, and less leftover chicken nuggets and pb & j crusts.  I used to eat fruits and veggies at every single meal.  I’m not sure when I got away from that, but I realized the other day that I had not eaten a single one for two days!  I’ve gotten in the habit of skipping breakfast, eating junk for lunch, and picking off the kids’ plates after dinner.  Besides less stress, I’ll have less inches around my waist.  Bonus!
3.                 Say NO to people more.  As in, NO, I won’t do one more thing at church.  And, NO, I won’t volunteer for anything at Squirrel’s school.  And, NO, I don’t have time to cook a meal for that new mom.  And, NO, I can’t be on that committee, no matter how important the cause.  I just don’t have any more energy to say YES to anyone asking me to do anything. 
4.                 Stop feeling guilty.  For everything.  I waste too much energy beating myself up for what I can’t do.  Time to focus on what I can do.  Because, gosh darnit, I do a lot of things, and I do them well!
5.                 Sleep more than 5 hours a night.  And since refusing to get up and take the kids to school and go to work will get me into trouble, I guess this means I need to start making myself go to bed before the clock strikes midnight.
6.                 Exercise.  I hate this one.  I am not one of those people who enjoys exercising.  Call me lazy, but I don’t want to move.  I’d rather sit on the couch and watch tv, or lay around and read a book.  Preferably with a bag of chips and a Pepsi.  But I really do feel better when I exercise.  And let’s face it…Munchkin’s not getting any smaller, so I better bulk up so I can continue carrying him around in meltdown mode.  ‘Cause I don’t see that little problem stopping any time soon.
7.                 Take care of me.  Get a massage, get a haircut, get a new pair of jeans.  You know, all those things I haven’t done yet this year.  Or maybe not last year either, if I’m honest.  And while I’m at it, I’m gonna go on a date with my husband.  And start working on my crafty stuff again.  I mean, with all the things I’m saying NO to, I should have time to do something for me, right?

So wish me luck (especially with number 1!), and maybe even consider joining me.  Because if you are a mom, then you probably need to take a few of these steps yourself.  After all, and as I've heard three different times this month already, stress will literally kill you.  And we need to be around for a long time still to take care of our families.  After all, we know they couldn’t survive without us.  Right?

Friday, March 11, 2011

My Son Rides the Short Bus

I was at my special needs support group last night, and as I was sharing about trying to get the ball rolling for Skye's IEP (which is not going well), one of the ladies said, "It must be hard for you when your kids' disabilities are not visible.  I mean, I've met your kids and I would never know they had any kind of disabilities."

Yeah.  It's hard.  I mean, my kids appear to me healthy, normally-developing, strong-willed kids.  And, in most ways, they are.  But spend a day with us, and little things start to make you go "hmm..."  Like the way that Munchkin has to lick everything and screams at the top of his lungs for what seems to be no reason.  (Except, believe me, he has a reason.  The rest of us just don't get to know what that reason is.)  Or the way that Squirrel chews her fingers until they bleed and bites her arms, leaving bruises, when she is stressed out.  Or just the every-day chaos that envelopes our home with two children who can let loose with all the sensory overload that they must try to control in school.  And if you just look around my house, you'll see picture schedules for each child, and a "how-to" guide for brushing teeth and getting dressed, and little reminder pictures all over to help them remember what needs to be done.  Most houses with elementary school kids don't need those!

But if you aren't with us for long, you won't see that.  You'll see Munchkin hiding under the table in a restaurant, or yelling loudly that something smells weird, and you'll wonder why we don't make him behave in public.  You'll see Squirrel hide behind me when the cashier talks to her, and refuse to make eye contact or talk to the strange woman, and wonder why we haven't taught her to be polite to adults.  You'll see Munchkin run screaming from his Sunday school classroom, after smacking the child next to him and telling the teacher NO for the tenth time, and wonder why we haven't reigned in his difficult behavior.  You'll see Squirrel (and Munchkin, for that matter) chewing holes into their clothes, and ask them something stupid like "Does that taste good?  Aren't you too old to be doing that?" and wonder why we let our kids act like babies still.

So, yeah, it's hard to have children with "invisible" disabilities.  Most of the other parents in my support group have children with much more obvious needs.  They deal with feeding tubes, and wheelchairs, and assistive devices for speech, and seizures on a daily basis.  Everyone looks at their child and knows that this child has special needs.  And while there are many idiots out there who still don't get it, most of the world knows that this child cannot control the way he acts.

And me?  Well, I deal with people asking me things like, "Are you sure he has autism?  Because he's so smart!"  (Yeah, the thousands of dollars we spent to have him diagnosed make me pretty sure he does.  And many kids with autism are geniuses...it's a neurological issue, which doesn't always affect IQ.)  Or, "Why is she in therapy?  She seems fine!"  (Because, again, the team of doctors who diagnosed her know their stuff. And by the way, many people "seem fine" and are struggling inside!)

The problem is, we have a messed-up view of "Special Needs Kids"  that defines them.  Part of it, I think, comes from our upbringing.  When I was in school, the special ed class was kept completely separate from the general ed population.  They rode their own bus, ate lunch in their own cafeteria, had all their classes in their own self-contained room.  If it wasn't for a friend who's brother was in that class, I may not have ever known it existed.  And the children in those classes had visible needs.  Children like Munchkin wouldn't have been in the Special Ed classes 30 years ago.  They would have been the trouble makers, the class clowns, the nerds, the ones who got picked on in the regular classes--they wouldn't have been identified as having special needs.  Children like Squirrel never would have gotten special help.

(You know how I can say that with complete confidence?  Because I was a child like Squirrel.  Had I been evaluated at age 8, I would have received the same diagnosis as her!  But they didn't catch things like that back then, so I sat in the back of the room, and kept to myself, and occasionally got in trouble for being too talkative or too hyper or too wiggly, but mostly just floated through school without drawing any attention to myself except as the smart kid.)

So, when you see my children, remember that special needs can take on many forms.  It's not always something you can see.  In fact, in this day and age (when 1 in 94 kids is diagnosed with Autism, and 1 in 20 has SPD) there often won't be any visible signs of special needs.  Don't be so quick to judge the child who's acting up in public, or the parents who seem to be at their wit's end.  You may be seeing something that neither the kid nor the parent can control!

Gone are the days when the kids on the short bus were different from "the rest of us."  My kid rides the short bus, and you know what?  He's not all that different from you or me.

Tuesday, March 8, 2011

Something for you to ponder (wisdom from two brilliant men)...


My skin is kind of sort of 
brownish pinkish yellowish white. 
My eyes are greyish blueish green, 
but I'm told they look orange in the night. 
My hair is reddish blondish brown, 
but its silver when its wet, 
and all the colors I am inside 
have not been invented yet. 
Shel Silverstein--Where the Sidewalk Ends


"I like nonsense, it wakes up the brain cells.  Fantasy is a necessary ingredient in living, it's a way of looking at life through the wrong end of a telescope...and that enables you to laugh at life's realities."  
Theodore Geisel (Dr. Seuss)