Searching for the Celebrations

Last year I wrote this really great letter and posted it on Facebook (because I wasn't yet blogging).  It was all about how far Munchkin had come in the past twelve months, and it chronicled all the little milestones he had reached and all the ways he was catching up to his peers.  I still tear up when I read it, remembering how much everything changed in a year, from learning he had autism, to accepting that autism, to learning how to live with and deal with the crap that is autism, to learning that life with autism goes on, just as life without it does.  I still celebrate that so much changed for him last year (and continues to change for him this year) as we figured out how to help him succeed and how to meet his needs and how to help him learn and grow.

So this year, it's only right and fair to chronicle Squirrel's year, since February of 2010 brought her many neurological struggles into light.  But as I start to write this, I struggle to find that same spirit of celebration.  The fact is, Squirrel's year hasn't had as many obvious victories.  That's not to say she isn't growing and learning and stretching her wings like any other kid.  It's just, I expected a diagnosis to open up so many doors for her.  I expected having a label for her behaviors to be the magic cure for those behaviors--or at least point us in the direction of an eventual bettering of those behaviors!  And not much of that has happened for her.

Let's back up a little.  In February, Squirrel was diagnosed with Sensory Processing Disorder.  No surprise there--we've known that since I first came across that term in learning about Munchkin's issues.  I didn't need a doctor to tell me that, nor did I need a line of therapists to tell me how to help her.  Since self-diagnosing her  3 years earlier, I'd researched and instituted a lot of the same things a therapist would have done with her.  And she's learned to cope with her sensory issues, and I've learned to "give" a lot more with her than I ever thought I would with my child.  I pick my battles, knowing that some of them are simply a more sophisticated, older child's version of a sensory meltdown--not a belligerent, unwieldy child who's willfully disobeying her parents.

The surprises came with the other labels--ADHD, depression, anxiety, OCD tendencies, and a whole bunch of motor, auditory, and visual processing issues.  These are the things we focused our precious therapy dollars on this year. And this is why I think I find it hard to celebrate Squirrel's accomplishments this year--because nothing we tried really worked.  It's not her failure that saddens me on review--it's mine.  It's the system's.  I expected faster results; more immediate progress--after all, Munchkin's amazing year set the bar pretty high.  I forgot that Squirrel's older, more set in her ways.  She's been dealing with all these things for so long and they are a huge part of who she is.  In much the same way it's hard for an adult to change their ways, Squirrel holds on to what's worked for her for so long, and resists changing the way things are done for a way that may or may not be easier.  She's more easily disillusioned than Munchkin, too, perhaps because many of the things we've tried with her this year haven't made a lick of difference.  She's afraid to try anything new--and that includes a new way of doing things.

And I feel like we're at a standstill here.  We could try some new therapies--I've done a lot of research this year, and there are things that could help her attention deficits and her processing issues.  But they are expensive, and she doesn't want to do any more therapy.  She doesn't think she needs it.  She's nine years old--at what point does she deserve a say in her own medical treatment?  She doesn't want to take her medicine anymore either.  I don't feel that's a decision she gets to make at nine years old.  But therapy?  If she's not invested in it, it will be less than effective.  Do I push her into it, spend the money on it, take a chance on it?  Or do I follow her lead, and lay off?  God knows we could use the money a thousand other ways!

But back to the celebration of her year, because as I write, I realize that there is still much to celebrate here.  Squirrel's made a lot of improvements this year, and while she's still lagging behind her peers in some ways, she's leaps ahead of them in others.  I always want to celebrate my children compared only to themselves, and what they are capable of.  So here's a celebration of some of Squirrel's accomplishments this year:

1. Squirrel's smile came back this year.  And that alone is worth cheering for, because I had so missed my happy-go-lucky, sarcastic, spunky little girl.  She was so lost in a haze of worry and anxiety that she lost that part of herself.  And almost immediately upon starting therapy and antidepressants, her beautiful personality started to shine again.  And shine she does, every single day since then!
2. Squirrel started to advocate for herself this year.  She has accepted what some would call limitations, and she has taught us all how to see the silver lining in them.  For example, a few weeks ago she told me, "Having ADHD is kind of cool, because it lets me think about 20 things all at the same time!  Most people can only think about one thing.  That would be kind of sad to only be able to think about one thing at a time."  She's been so open with her friends, telling them why she chews on her "necklace" (her Chewelry) and why she sometimes just needs to be alone for awhile.  She's explained SPD and ADHD to anyone who's asked her.  I was especially proud of her for wanting to participate in our recent calendar adventure, because she said she "wanted others to know that kids with special needs are just ordinary kids like everyone else."  (My kids took part in a calendar featuring various special needs, to spread awareness in the community.)
3. Squirrel is learning to take responsibility for her own needs.  She is learning to ask for a quiet space when she's overwhelmed, or for something to chew on when she needs to focus.  She's learning that her fears aren't worth fixating on, and that she can talk herself down when her anxieties try to take over.  As someone who deals with her own Anxiety Disorders, let me tell you, these are hard skills to learn!  And she's learning them better than many adults do!
4. Squirrel participated in her school spelling bee, and came in second place in her grade.  She memorized and presented lines in a couple different programs this year.  She performed in her first dance recital, as well as for 3 parent viewings.  She sang in the children's choir at church.  She gave her first speech in front of the class and got the highest marks in the class.  All this from a little girl who was so anxiety-ridden, she wouldn't even answer a question in public or talk to a stranger one-on-one, let alone get on a stage or in front of a group!  Her confidence has really soared since being on medication!  I guess feeling better translates to feeling better about yourself too!
5. Speaking of more confidence, Squirrel stopped clinging to me like a scared little possum this year.  She used to be literally glued to my hip when we left the house.  She wouldn't go to the bathroom without me, wouldn't talk to anyone when we were at someone else's house, wouldn't go play with the other children.  This year I started pushing her a little harder to try things on her own.  She now orders her own meal at restaurants, she goes into the bathroom in public places without me, she pays for her own things in the checkout lines at stores.  She's now the one pushing me to be allowed to do more things on her own than I'm ready for!  I guess in that way, she's a typical nine year old girl now!
6. Squirrel learned to swim this year, after an intense fear of the water kept her on the edge of the pool for  her whole young life.  And she decided for herself that she wasn't going to be afraid any more.  Go Squirrel!

So there it is.  In a long, rambling, round-about way, I have found the celebration my heart was longing for.  Perhaps we haven't failed her after all.  Maybe it will be a much more eventual process for Squirrel, but I know she'll catch up to her peers socially and emotionally.  She'll learn coping skills for her attention issues.  We'll continue to address the motor delays as they come along (she's absolutely determined to learn to ride her bike this year!)  She'll continue to shine in her own way, and frankly, there is no other way I want to see her.  She is an amazing, wonderful child--not that I've ever thought otherwise.  No, I'm more likely to doubt myself than I am to doubt her.  But I will work on trusting my instincts and my insights more this year, and I will focus on all the ways my little girl soars.

Gotta Keep Going

This has been quite a week.
I'm worn out.
Beaten up.
Bruised and sore.
My body is weak and tired.
My brain is buzzing.
My heart is heavy.

This week has brought to mind reminders of where we were two years ago.
The daily frustrations.
The battles over simple tasks.
The dread at the thought of getting out of bed and facing another day.
The exhaustion that hits you way before it hits the kids.
The yelling.
The crying.
The meltdowns.  Oh, the meltdowns.

Two years ago, there was so much we didn't know.  We were just starting down this road, with more questions than answers.

But we've been doing so well lately.  Munchkin had been doing so well.
We had reached a place where we understood and anticipated his every need, his every move.
We were getting so good at preventing and heading off those meltdowns!  We were going weeks at a time without a major one--days even without a minor one.

Life had settled into a groove for us.  Life had become manageable.  Life was actually fun again.

But this week.  Oh, this week.  What happened this week?
The meltdowns are daily and often.
The bedtimes are tough and leave me mad and hurt and frustrated.
The aggression is leaving all of us with bruises on our bodies and our souls.
The inappropriate behaviors.  The unacceptable words.  We're dealing with all our old demons, with some new ones thrown in for good measure.

And we're trying so hard!  But it's stressful.
It's exhausting.  Bone weary, body weary, soul weary.
It's lonely.  No one really gets it.  No one knows how we struggle at home, because we try so hard to hold it together in public.  All of us--me, my husband, Squirrel, Munchkin too.

It's so unfair.  To us as parents.
To Squirrel, who is so kind and compassionate even as her brother is being so hurtful and mean.
And to Munchkin, who does not mean to be this way.  He doesn't intend to hurt us.  He doesn't fully understand that what he does and says leaves scars that are hard to heal.
And he doesn't know how much my heart breaks to see him struggle and meltdown and fight so hard about little day-to-day things.

And it's not his fault.  It's not anyone's fault.  It just IS.

Maybe it's the holidays.  Maybe it's the changing seasons.  Maybe it's his diet, or a growth spurt, or any of a million other mysteries that autism brings.
Maybe I got too cocky, thinking we had this autism deal all figured out.
Maybe this is just how our life is going to be from now on.  A roller coaster of ups and downs, twists and turns.

Maybe you could just pray for us.
I'm discouraged.
I'm tired.
But I'm not giving up.
This is not a life that lets you give up.  Each day brings something else to fight for, to strive for, to reach for.
So when you think of me, please pray for strength for me.  Pray for my daughter who tries so hard to understand all of this.  Pray for my husband who deals with it more than me right now, playing the role of stay-at-home dad while I work.  And pray for Munchkin, that whatever is going on with him will calm back down so we can get on with the process of loving life again.

Munchkin Joins the Four-Eyes Club

Munchkin got glasses tonight.  I took him to the eye doctor after his teacher told us he says he can't see the board.  I always knew this day was coming...I started wearing glasses in 2nd grade.  My hubby's been wearing them since 1st.  Squirrel got hers in 3rd grade.  And so genetics dictates that Munchkin was bound to have his turn sooner or later.

Eye exams are their own unique kind of torture.  They don't hurt, necessarily (unless they put those awful numbing drops in that feel like liquid fire for about 30 seconds before making your eyes feel like they belong somewhere other than in your head.)  Those of you who wear glasses know how it goes; for those of you fortunate enough to have been blessed with 20/20, let me explain.  You sit in a chair in the semi-dark room and the doctor puts a thin rectangle of light up on the opposite wall, and asks you to name the letters you see.  And you squint and stare and try to make out a letter among the black spots in the middle of that orange square of light.  Then he puts this big machine over your eyes, and starts spinning dials asking, "Can you see anything yet?"  Followed by, "Is it better now?  Or...now?"  And you sit there going, "Uh, I don't know?  Is there a right answer?  They both look kind of the same.  Maybe that one's a little blurry...Oh, that one's definitely blurry, yeah, that's better..." until somehow he figures out what prescription you need.  You basically feel like a moron for awhile because you can't even read your letters and your sure you are failing this test somehow.  Then he takes the big machine away and tells you to stare at the letters while he shines a light in your eyes--and blocks the letters with his head which is mere centimeters away from yours.  And you meanwhile hold your breath and pray he can't smell the onions you had on your salad at lunch.

Well, an eye exam with Munchkin was complete and utter hilarity!  He climbs in the chair with his hand down the back of his pants, talking a mile a minute about his itch on his butt (I wish I was kidding) and then about his friend Jason at school who has glasses and how he likes to play with legos now because Jason likes lego ninjas and did you know that Angry Birds is actually my favorite game and...  Meanwhile, I'm trying to tell the doctor why we're here and that (in case you can't tell) Munchkin is on the autism spectrum and has some sensory issues with lights and also some tracking issues, so...good luck!

He was awesome.  (Turns out his nephew has Aspergers and he knew lots of ways to focus Munchkin enough to test his eyes.)  He told him to sit back in the chair and read the letters.  They were too blurry, and Munchkin blurts out, "Hey!  Those aren't letters!  Unless someone messed them all up!  Did someone mess up your letters?"  It was immediately obvious to me that he couldn't see worth a darn because he read every other letter wrong.  Then the doctor covered each eye in turn with his paddle and asked Munchkin to read the letters.  He kept trying to turn his head sideways to read them, trying to figure out how to see around the paddle.  And he kept a running dialogue the whole entire time.    "Wait!  Why are you putting that spoon on my eye?  How am I supposed to see with that spoon in the way?  Only one eye works when you do that!"  (I really don't think the child stopped talking from the moment we entered his office until we left.)  But he did try to read them!

Then the doctor put the machine on his eyes and Munchkin says, "Hey!  I can't see a thing!  Hey!  Only one eye can see!  But it can't read any letters!"  And as the doctor turns the knob to clear it up, Munchkin suddenly yells, "I can't see I can't see I can't...Whoa!  I can see it now!" and starts spouting off the letters.  The doctor kept turning and asking, "Can you still read it?" (Yeah!  Yeah! Yeah!) until he got a "No!"  He then turned back and Munchkin would say "Hey, I see it again!"  And so he was able to decide his prescription.  (Turns out he's significantly near-sighted.  Just like the rest of us!)

Then he tried to look into Munchkin's eyes with his light.  You aren't supposed to move your eyes, but of course, Munchkin kept looking all over the room--at the light, at the ceiling, at the machine, at the light,at his face, at the light, at the wall, at the light...So he put some pictures on the wall and told Munchkin to keep looking at the pictures.  But of course, he has to get right up in your face to see your eyes, therefore blocking your view of the wall where the pictures are.  And Munchkin yells out, "Hey, I can't see the pictures!  I can't see through you!  What, you think I have super powers and can see through you?"  And when he turned the pictures off and turned the light back on at the end of the appointment, Munchkin said, "Hey!  Your pictures disappeared!  Do YOU have super powers?"

I don't think I've ever laughed so much at any kind of health-related appointment before!  Between laughing at Munchkin, and watching the doctor try to stay focused and not crack up himself, I was seriously amused.  What a fun way to spend time with a doctor!

Well, until I had to pay the bill anyway.  This little Munchkin cost me $200 tonight!  But, with any luck, his glasses should last--they are completely bendable and flexible, with scratch-resistant lenses, and a strap to hold them on his head (which he so far refuses to use, because he's afraid it will "choke his brain.")  And a one-year warranty on the frames AND the lenses.  Which I fear we'll use probably more than once.  (sigh)

He can't wait until Monday to bring his glasses to school for Show and Tell.  He doesn't quite get that he'll be Showing these off for the rest of his life!

Missing My Kids

I started working full time again this month.  Hubby's out of work for the season (don't feel bad for us...it happens every winter, and we're used to it now.  Money gets tight, but we'll be fine!) so it's time for him to play stay-at-home-dad and for me to be the bread winner.

I've always loved work.  I love my job, especially the new challenges I have there now.  After 16 years (really?  16???) in the classroom teaching everything from toddlers to kindergartners, I am now in a mentoring position where I work with all 15 classrooms in our center and help them in the day-to-day running of the class.  I do a lot of in-room training, a lot of modeling for the staff, and a lot of consulting for everything from behavior issues to trouble meeting a requirement to screening for special needs to improving a program component.  I am really enjoying it, though it is quite a bit more stressful than teaching ever was.  I have to be the bad guy a lot of the time.  And I have to practice way more patience and tolerance with the adults in the building than I've ever had to practice with the children.  (I'm not sure that's the way it's supposed to be?!?)  But I really do love it.

I haven't worked full-time since Munchkin was in preschool.  I forgot how utterly exhausting it is to come home from a 9-hour day at work (after starting my day 3 hours earlier than that to get kids to school appropriately dressed, fed, and ready for their day) and throw yourself right into the dinner preparations and homework time and baths and eventually bed.  Granted, it's easier now with Daddy at home to at least get the homework started (unless there's 4th grade math involved--then they wait for mom to come home).  And Daddy does a  lot of the running kids to therapy and dance and all that fun stuff too.  So when I do drag myself in the door, all that's left for me to do is cook supper, and maybe a little homework stuff before bed.  And in all fairness to Hubby, he'd gladly make supper if I got it started or left him detailed instructions.  I just haven't managed to get myself that organized or that on-the-ball yet!

But what I especially forgot is how much I miss my kids when I'm not with them.  I really enjoyed picking them up from school everyday.  I enjoyed spending a little time hearing about their days while they had a snack.  I liked touching base with their teachers each afternoon and seeing their friends.  I enjoyed hearing them play together (at least when they weren't fighting) and I enjoyed--well, no.  I did not enjoy homework time.  But I liked everything else about being with them.

Now, I come in the door and Munchkin runs up to hug me, then heads back to the computer where he's engrossed in a game.  Squirrel's usually buried in some activity and doesn't even realize I'm home until I hunt her down.  They've both already had their conversation time with Daddy, and now they're both in their shut-down mode that finishes a school day.  The upside to this, of course, is that I'm getting time to actually sit down and visit with my hubby each day while the kids veg, and that is something I've also missed out on all summer while he worked crazy hours.  So, for that I am grateful.

But I do miss my babies.  By the time we eat, it's 7:00 at night and time for baths and bed.  I used to beg Hubby to take the bedtime routine, because after a day of staying home with the kids, I was done being Mom about an hour before they were done needing me.  But now, he'll tell Munchkin it's bedtime, and I'm the one begging for 5 more minutes!  Just one more story with my boy; a few more minutes of a video with my girl.  I found myself actually wanting to stay in bed with Munchkin tonight just so I could cuddle him until he fell asleep.  He is, of course, too big for that now in his opinion.  He told me, "You can go now Mom.  And close my door all the way when you leave."

I can't wait until March comes along, and I get to cut my hours back down and be the one to do the after-school pickups, and eat snack with my kids, and cook dinner together, and play outside before starting homework, and fit in some lego time or a board game while we wait for daddy to get home.  But not homework time.  Ugh.  Daddy can keep that one.

Reevaluating Autism

We're coming up on the two-year mark of our journey into Autism.  In 2009, two very nervous and exhausted parents met with a highly-recommended developmental neuropsychologist to discuss the strange behaviors and developmental delays in their four year old child.  We were concerned and scared and tired of feeling out of control in our own home.  We were mentally and physically exhausted with the daily stress of meltdowns between every moment of endless movement and energy.  We were troubled because we couldn't communicate with our son when he was out of control (which was much of the time) and because we didn't feel like we could connect with him when he was calm.  And--having finally let go of that thin thought that he would grow out of these behaviors--we were holding on to the last thread of hope that maybe, just maybe, this would be the person who would finally see the things we were seeing in him and offer us some help.

And we were not let down in that regard.  Hours and hours of evaluations stretched over the next weeks led to a label and a reason for his behaviors.   And lots of suggestions on how to help him, and how to help ourselves as well.

But I've never been completely comfortable with the diagnosis.  When we first started this process, I researched my little heart out.  Every waking moment during the weeks of testing was spent on the computer or in the library, trying to prepare myself for whatever the doctor was going to say.  When we went into her office for that fateful meeting where she was going to tell us the diagnosis, I was pretty sure I was one step ahead of her and knew what she was going to say.  I had already self-diagnosed my boy with Sensory Processing Disorder.  When she started talking about his global delays (meaning, delays across many areas of development) with huge delays in social and communication skills, warning bells went off in my head.  These were not delays I had read about in conjunction with SPD!  After 20 minutes of telling us the results of his tests and what the different therapists on her team had observed, we finally got that label...PDD-nos.  And I drew a blank.  Nothing in my research had mentioned this!  It was several minutes of stunned processing on my part, trying to still my beating heart and the noise in my head to hear what she was still saying, when the word "autism" broke through.  I remember saying, "Wait!  He has autism?"  And she explained about the spectrum being like a bowl, with some people being at the top of the bowl on one side (low-functioning, or Classic Autism) and some being at the top of the bowl on the other side (Aspergers Syndrome), and Munchkin falling into that large area in the middle of that bowl that they called PDD-nos, meaning he had "Global Developmental Delays with Autistic Characteristics."

We went home and I immediately got back on the computer to research this.  As I read about the signs of autism, I realized with a sinking feeling that Munchkin really did display a lot of these things.  He avoided eye contact with others.  He often went into his own world and ignored everything around him.  He didn't play with toys appropriately, but preferred to line them up or to lay on the floor and move his trains back and forth in front of his face.  He obsessed about things to the point that nothing else mattered.  He would play alongside other kids but seemed oblivious to their presence, unless they interrupted his process--then he melted down or lashed out aggressively.  But for all the red flags he DID display, there were just as many that he DIDN'T.  He didn't flap his hands, or spin the wheels on his tractors, or stare at patterns and designs on things, or rock his body back and forth.  He didn't have speech delays, and talked a mile a minute!  He made eye contact with me and with his teacher at school.  He was affectionate, almost to a fault with the way he lunged his body at you for a hug and squeezed the air out of you.  And he was smart--practically a genius!  How could anything be wrong with the brain of a child who could recognize all his letters and numbers at 15 months and spell and read many words by age 2?!

But over time, the autistic behaviors became more apparent.  He didn't flap his hands, but he did spin in circles a lot.  Ok, too much to be considered normal.  He talked a mile a minute, but always about Thomas the Tank Engine.  In fact, he knew everything about Thomas, had even memorized whole episodes of the show!  And he didn't always respond to your questions, or maybe if he did, his answer didn't make sense.  Like when I asked him what he wanted to eat, and he said, "Ummm...blue?"  But when I asked again, "Do you want waffles or cereal?" he said "waffles" (which, coincidentally perhaps, were in a blue box).  He made eye contact when he initiated it, but refused to do so when you asked him too.  He did have a fascination for patterns, always watching the way the sun played across the wall, or driving his trains on the lines of the tile floor, or having to avoid the lines in the tile at school and jump from square to square.  And my little genius (for he truly was incredibly smart in many areas, testing at a 7- and 8- year old level in many higher functioning areas of the brain, like puzzle-solving and reasoning) couldn't do such basic tasks as getting himself dressed or holding a crayon to scribble.  Over time, I embraced his diagnosis and we began working with therapists and with the school district to help him overcome his delays.

There is no longer any question in my mind that my child has "autistic-like" qualities.  Here we are two years later, and he still displays many of them, though he has overcome many of them as well.  He now makes eye contact in a fairly typical way--unless he's distressed or overwhelmed in some way, in which case he avoids it still.  He still spins--a lot more than what would be considered typical, especially now that he's six--and he's actually picked up the habit of soothing himself by rocking.  He still lags a year or two behind his peers in social development.  He will play with other children now, and sometimes he even initiates it, but he doesn't have the skills that most six-year-olds have in play.  He doesn't take turns, or let others lead the activity, or allow for any variation from the rules as he understands them.  This makes it hard for him to join others in a game, because they get mad at him for being so rigid and for not playing fair.  And he doesn't have a clue why they're upset, so he just thinks they're being mean to him.  He still doesn't understand emotions or read facial cues well, but he has started making and understanding jokes in his own way.  He doesn't understand sarcasm or some of the strange idioms in our language, and he's still a very literal and visual thinker.  And he still obsesses about Thomas--though he's branched off now to Angry Birds and Hotwheels as well.

I no longer wonder if he's really autistic.  I still maintain, though, that many of his issues are more sensory-related--which definitely falls into the spectrum, but doesn't define it.  Almost all the things he does can be explained with an SPD diagnosis--but all of them can be explained by autism too.  Ultimately, it doesn't matter.  Having an autism diagnosis allows him to receive services through the school district, which, at this time in our life, is the only therapy we can afford to give him.  It also allows insurance to cover at least some of his therapies when we do pick them up again, because they'll allow for Occupational and Speech Therapy under the autism category, but they won't even recognize SPD.

I do wonder where we'll be next year, when he'll have to be reevaluated in order to continue services at school.  Will he still be "Autistic-Like" enough to qualify?  Will he keep his diagnosis or will it change?  Will he ever reach a point where he can be considered "neurotypical" and we no longer deal with this?  I wonder this one a lot--I've accepted that this is our son's life, that he will always have Autism and will always be working at the things that his brain doesn't want to do.  But I wonder sometimes if a day will come when his delays will be gone and his development will catch up to his peers.  It's a possibility that I don't put my hope in for fear of disappointment if I do, but also one that I can't quite give up on.

Like I said: Ultimately, it doesn't matter.  Munchkin is who he is, regardless of what we label it.  The label doesn't define him--he defines it.  Him, and all the other kids out there who are on the Spectrum, wherever they lie in that bowl.

Looking Back to Move Forward

Sometimes the smallest, most insignificant things can have a great impact on your life, if you just keep yourself open to the possibilities.  This post is a far cry from other things I've written--this one comes from a place inside of me that I don't often look into.  But I think God wanted me to do some soul-searching this week, and I'm glad I listened.

I follow a handful of blogs, some for information, some for support, and some for pure humor relief.  The other day I was reading one about Michelle and JimBob Duggar's announcement of child number 20.  I don't care one iota how many kids that family wants to have (though I do have an opinion about parents parading their children about on TV!)  I was reading the comments to this blogger's post because they were almost as funny as her article itself, when I stumbled upon one strongly-worded comment criticizing the Duggar's lifestyle from someone who had been raised in a similar lifestyle. This reader also made reference to the recent children's deaths attributed to Michael Pearl and his teachings. She referred to another blog, and, fascinated, I checked it out.  And was subsequently introduced to a lifestyle I had only vaguely known about before this!

It's referred to by several terms--this blog refers to it as Quivering most of the time, though it's formal name is Christian Patriarchy.  Let me say up front that this blog is not at all singing the praises of the Quivering philosophies--in stark contrast, this is a website where women who have gotten out of this lifestyle are telling their stories as part of their recovery from the emotional, physical, and spiritual abuse they endured while living it.  Now, I don't want to bash anyone's lifestyle without knowing more about it than what I've read in one blog, but I will say this:  I am drawn to these women's stories like someone is drawn to the scene of a car crash.  I am sickened by what I read, yet can't wait to read more!  I want to reach in and pull these women out of the mess they're in, and at the same time I want to shake them for allowing themselves to be in this place at all!  If you want to read some of this for yourself, this is the website I was reading from.

I actually know people who follow this lifestyle in part or in whole.  I know a family who has embraced it fully and lives it out exactly as these women describe it in this blog.  I know a family who follows large parts of it, but rejects some of it.  Having been raised in the church, I have heard of many of the books, publications, and training materials referred to in these stories.  I even have homeschooling friends that subscribe to many of them.  I also know people who embrace some of these teachings and are not anything like the people I've been reading about--families who have many children and "trust God to plan their family," or families who homeschool their children.  So, I make this disclaimer: I lump no one into any kind of stereotype, nor do I criticize the lifestyle of anyone I know.  I certainly aim to offend no one here!

So why does it fascinate me so?  Because of one of the first stories I read when I clicked on it.  This woman told of meeting a man who seemed like the perfect Christian man and the ideal husband.  She told of how he wooed her and made her fall in love with him, and slowly began changing her by convincing her that "the Bible says..." And how, being in love and wanting to please him, she changed for him.  First little things--how she wore her hair, or how much makeup she used, or the clothes she wore.  Then later, she let him influence who her friends were (people he approved of--people that were "good Christian role models" for her).  And then she let him convince her that all the people who loved her were sinners and were dragging her down into the pits of hell with them.  He alienated her from her family and her friends, moved her far away from anyone she knew, and convinced her that he alone could take care of her, meet her needs, and guide her down the right paths.

Sounds insane, right?  Except that I lived this story out myself, and when you are in the middle of it, it's not so insane.  Until that brain of yours starts thinking for itself again, you just allow yourself to be pulled into this trap, and you truly start to believe that you are better off with this man than you ever could have been yourself!

This writer went on telling her story about how, once this man had alienated her from everyone he didn't approve of, he married her.  And when she didn't live up to his unrealistically high expectations, he punished her.  Over and over, the cycle repeated itself.  She'd mess up, he'd hurt her and degrade her--all in the name of love, of course, and all because he was trying to shape her into a more Godly woman--then she'd feel horribly guilty, repent of her sins against him and God, and they'd live happily for awhile.  Until the next time she messed up.

Again, been there, done that.  The difference between her and I was a small one--my husband got caught cheating on me by the husband of the other woman.  This situation, and the backlash of it all, was enough to wake me up and make me start using that brain of mine again.  I got out before any children could be brought into our marriage.  The woman I was reading about had many children and only got out when she almost died from the abuse of her husband while recovering from the birth of her last child.

As I read her story, I realized that I had been sucked into this Patriarch lifestyle when I met this man.  While he didn't embrace it as fully as some people have, he definitely embraced many of its main tenants and he certainly thought he had the right to physically and emotionally abuse me, and completely control me, in the name of his religion and his God-given duties as husband.  I remember his aunt giving both of us some of the publications this movement produces--his aunt and his grandmother were very strong influences on his thinking.  I think that if someone had fully introduced him to the Quivering lifestyle, he would have embraced it whole-heartedly and I would have followed along, willingly allowing him complete and total control over my life and the children we would have. He already had me pretty brainwashed--it wouldn't have been a big step to cross the rest of the way over.

I don't know if he actually turned to this lifestyle later in life.  I filed for a restraining order the year after our divorce when he continued to threaten me and verbally abuse me.  Years later, he sent me a letter with a photo of him and his new family.  The photo showed a perfect little wife who looked very much like I did, once he had finished molding me.  He had several children, all stair-steps apart in age.  And they all looked happy.  I prayed at the time it was true happiness, not the fake smile-for-the-world-to-see happiness I always portrayed when we were together.

I harbor no ill-will toward him, but reading this blog really reminded me of how far I've come, and of how much further I could have fallen.  It was a dark time in my life, and it took me a long time to heal from the pain of it.  But I have put it behind me, and I have learned a lot about myself, God, and other people through this.  I've always maintained that God protects those who are devoted to him, and that He will use even the most painful situations we endure.  I know He protected me in ways that I only this week truly grasped!

I guess you never know where a simple thing (like a humorous post about an extremely large family) will take you if you let it.  Sometimes healing doesn't happen all at once, but rather in small increments throughout the course of a lifetime.

It's Conference Time!

Parent-Teacher Conferences.  Does the term stir up dread in you?  Or is it something you look forward to?

I remember these days as a kid.  A day off of school.  Waiting all morning with a mix of excitement and dread for it to be time to go to the school.  Sitting in a chair in the hallway with my siblings while mom talked to each of our teachers, one at a time.  I'd sit there with butterflies in my stomach, swinging my legs against the metal folding chair and wringing my hands in nervous anticipation of what was being said in that room.  I was never too worried--I aced every test, answered all the questions correctly, handed in my homework on time, and raised my hand to talk in class.  I was quiet and calm when I needed to be, smart and articulate when the situation called for that, and stayed out of trouble.  But you never knew what the teacher was going to throw out there that might not be taken so well by the parents!  I'd sit in that hallway reliving every moment of the last quarter, wondering if each little incident might have been one that would get me in trouble, until Mom finally walked out with a smile on her face and I knew I could relax.  Yeah, I was a pretty good kid.  I didn't ever have anything to worry about, but I worried all the same--guess I've always been that way.

Now I sit in the parent's seat at these conferences.  And I enter them with the same mixture of excitement and dread.  I can't wait to hear what level Munchkin's reading at, or what a magnificent writer Squirrel is.  I love hearing which subjects are their strongest ones, and which ones really give them a creative outlet.  Like myself at that age, Squirrel doesn't give me much to worry about.  She's intelligent and articulate and creative.  She aces her tests and answers all her school work correctly.  This is Munchkin's first graded year of school, but he's following in his sister's footsteps--every test paper he's brought home so far this year has a big red A+ on it.  Yes, I'm a proud momma.  And no, I don't worry about their academic performance at all.

So what do I dread about conferences?  For some people, it's the unknown--not knowing what the teacher might throw out there as a problem or concern.  For me, though, it's a combination of the unknown and the known.  I KNOW what problems will be thrown on the table for both my children.  What I don't know is what new way this is manifesting itself in now?

Squirrel's fabulous school lets me come in and visit anytime.  I speak to the teacher several times a week at pick-up time, and I am welcome to stop in and see her any morning before school if I have a question or concern.  So anything that's going to come up at a conference has already been addressed.  There probably won't be any surprises there--but you never know for sure!

Now, Munchkin's school is another story.  In writing, they say they welcome visitors.  In reality, you must sign your life away to step past the office!  I've been to his classroom exactly one time during the school day since he started there last year--and that was because I insisted on walking him to class one day after a very rough and late start to our day.  So I don't know what goes on in his school.  What I do know is that Munchkin brings home a Behavior Book everyday, where the teacher lets me know what "color card" he was on (the cards are coded for behaviors).  He's been on red or black (the lowest colors) a lot this year, so I know his behavior is far from perfect.  But finding out why has been quite an ordeal!  What he tells me rarely matches what the teacher tells me, but I'm starting to get a clearer picture of how his explanations of the scenarios leading up to a red card actually mesh with the teacher's explanations.  And what it basically boils down to is sensory overload that is not being met--which means, his IEP is not being followed.

I am prepared for Parent-Teacher conferences today, though.  I have a notebook full of articles and checklists on Sensory Needs and how to meet these needs in the classroom.  I've highlighted ideas that address Munchkin's specific needs as I know them to be.  I just found an excellent book on this too, which I printed the title and author of and will be giving to the teacher as a recommendation for her to use in the classroom.  Will I offend his teachers?  Possibly, though that's certainly not my intention.  My intention is to help my Munchkin succeed in school, and his "behavior" seems to be holding him back from that success.

So, yeah, I'm going to Parent-Teacher conferences this afternoon with a combination of eager anticipation for the glowing academic reports, almost overshadowed by fear and dread of the unknown and known social and behavior reports.  Wonder if all parents feel this way today, or if it's just those of us with special kids?  I'm guessing we all do!

Punches

Some things in life take your breath away.  Not in a beautiful, breath-taking way, though life is full of those too.  More like a punched-in-the-stomach-and-now-I-can't-breath kind of way.

The phone call that someone I love had tried to kill himself.
The death of my grandpa and the loss of my one-man cheering squad.
Those horrid words: "I never loved you" and "I want a divorce."
Driving away from the life I'd tried so hard to create, with everything I owned in a borrowed pick-up truck.
The loss of the baby I didn't even know I wanted until it was gone.
The news that the baby girl I was carrying was in danger, and the not-knowing for the next three months.
My newborn daughter being whisked off to the NICU when she stopped breathing just hours after her birth.
The loss of another baby, one we really did want, and the medical treatments that made it impossible to try again for a year.
The foreclosure notice delivered by the man with pity in his eyes.
The news of impending unemployment for the winter months to come.
Hearing "You're son has autism."
Followed a year later by, "You're daughter is dangerously depressed."

Sometimes it feels like you've been punched so many times that the next blow will make it impossible to get back up.  But we always do get back on our feet.  My husband and I, we are strong.  We've been through all but those first two together.  He helped me stand strong through my divorce from my first husband, and he has been my friend and partner through all that has followed.

And between the punches, life actually does allow you time to recover.  You get up, learn to breathe again, and become better for the lessons the fight has taught you.  We've had periods of grace, goodness, and peace in between the pain.  God has held our hands through it all, and proven that, though He might let us fall, He'll carry us until we can walk on our own two feet again.

But now life is throwing its punches at us again.  There are a lot of unknowns right now.  We're tense; ready for a fight.  We're waiting anxiously for the punch that will take our breath away again, and praying it doesn't come, and hoping nothing is waiting in the shadows that we don't even know about to sucker-punch us while we're distracted.  I wish I could say it's easy, trusting as we do that God will meet our needs.  But, for me at least, it's hard.  I don't want to be punched again.  I don't want to feel like I can't catch my breath, like the very air around me is so heavy it might crush me.  I'm tired, and anxious, and slightly sick waiting for whatever will happen to just happen already.

Sometimes, waiting for the punch is harder than the sneak attack.



Can you hear when we call
There where we fall
Standing our backs against the wall
Top of our lungs
How far we've come
Where pain and love bleed into one
All that we need
It's so bittersweet
The pain that opens our eyes to see
Baby when all you see is darkness
Coming down now
We all need forgiveness
Coming round now


Mat Kearney--Down

Kids For Sale

"I would sell my kids if I thought anyone would buy them.  And not return them for a full refund within the hour."

This was my Facebook status tonight.  At the time of writing, I was only slightly kidding.  If someone had offered me money for them, I would have sent them packing and taken myself off for a spa weekend.  Sure, I might have regretted it after the initial exhilarating hour of freedom.  But that's where I stand tonight.

It's been a really rough night.  Our normal after-school routine is this:  Both kids have a snack, change their clothes, and play for about an hour.  When I call them in, Squirrel sits at the dining room table and does her homework.  She calls me if she needs help.  I can see her from the kitchen where I'm fixing dinner, and I redirect her back to her homework every time she gets up and wanders around (which is about every 5 minutes).  Munchkin sits at the kitchen table at the same time, and I help him do his homework.  He is usually done in about 15 minutes, so he then goes and watches TV or plays computer games until dinner.  After we eat, Squirrel sits back down and finishes her assignments, and I help her study for any tests or work on big projects for another half hour or so.  Then they relax, play, watch TV, take showers, etc. until bedtime.

Here's how tonight's routine went:  After school, the kids asked if we could use our Baskin Robbins gift certificates and go get ice cream.  So we did.  They ate their ice cream and then played outside for an hour.  And all was blissfully peaceful.  Then I called them inside to do homework.  Squirrel and Munchkin came in from outside arguing about something stupid.  I split them up and sent Squirrel to start homework.  Munchkin was much more wound up than usual, so I told him to go play in the living room for awhile before starting homework.  Instead, he kept coming in the kitchen to talk to me.  To get to me, he had to cross through the dining room.  Every time he came through, Squirrel made some smart remark to get him upset.  He yelled and screamed at her.  I told her to knock it off.  She yelled at me that she was just joking, or that he started it, or that he keeps annoying her.  Munchkin kept demanding (yes, demanding) juice and snacks and water and attention.  Squirrel kept making huffy sounds and growling at him and rolling her eyes and getting exasperated with me.  I was starting to yell back at this point, because a mom can only take so much attitude before she starts to give it back!

I finally managed to get dinner made.  (Well, warmed up.  It was leftovers!)  I told the kids to turn on Phineas and Ferb and watch one episode while they ate, so that I could step away and have a moment to myself.  I immediately heard yelling and screaming from both parties, followed by Munchkin wailing, so I gave up on the idea of a moment alone and came back to supervise.  They were fighting over who would be under the blanket.  Um...how about NO ONE can be under the blanket because YOU'RE EATING!!!  Dinner ends, I send Squirrel back to finish her homework.  She huffs and puffs some more on the way out, returns moments later, and throws (yes, throws) her homework at me.  I grit my teeth and ask her to pick it up and try again.  I check her homework and show her a few mistakes that need to be fixed.  And as she starts stomping and yelling and grabbing her paper away from me, I lose it.  I yell at her to fix the mistakes on her own then and go do it now!

Then I turn to Munchkin and tell him to get his homework out and let's get it done.  And, sensing his sister's rebellion and thinking he'll try it on for size, he refuses.  Forty minutes and several meltdowns later, he finally finishes his (very simple) homework.  I send Squirrel to the tub while this is going on, then to her room when she's done, and give Munchkin a fast bath.  And that brings us to bedtime...

I just sat my children down one at a time and had a talk with them.  It's a talk I remember my mom having with me a time or two.  It made me feel guilty and horrible as a child to be on the receiving end of it.  And it makes me feel guilty and horrible to be on the giving end of it too.  But sometimes, certain things just need to be said.

In no-nonsense, to-the-point, age-appropriate words, I told each of my children that I am not going to let them treat me the way they treated me tonight.  To Munchkin, I told him he is not allowed to growl at me, or tell me "no" when I ask him to do something, or yell at me when he doesn't like what I say to do.  I told him he made me very sad and mad tonight when he was mean to me.  He told me he was sorry, and then I told him to go to sleep and be a good boy tomorrow.  To Squirrel, I told her that everything I do is for her own good.  I am teaching her to be a responsible, considerate, capable, self-sufficient, functioning member of this family, so that she can grow up to be a functioning member of society.  I am not out to get her, or trying to make her angry or irritated or upset, or making her do things because I am mean.  I am not trying to ruin her fun, or make her bored.  I told her that I do a lot of really nice things for her--things I don't have to do, like taking her for ice cream after school.  And when she treats me bad for the other things I need her to do, she makes me feel very unappreciated and unloved.  I further told her that she made me angry and really hurt my feelings with the way she treated me tonight.  She looked at me with tears in her eyes--which I suspect were more tears of defiance and anger than of sorrow and regret--and I told her that if this continues, I will stop doing special things for her, and I will stop letting her do the fun things she gets to do now.  She will come home from school, do her homework, eat dinner, take a shower, and go to bed, no matter how early in the evening it might be.  I then told her that I was going to say good-night now, and she should stay in her room until bedtime, then turn off the light and go to sleep.  Then I walked out.  And sat down and had a good pity-party for myself, complete with tears, angry muttering to myself, and finally, ice cream.

Wow.  Being a parent is tough work.  Good thing every day's not as tough as this one!

Learning To Ride

It's a right-of-passage...learning to ride a bike.  Every kid goes through it at some time.  It creates a new sense of independence and freedom for them, opening up all kinds of possibilities.  It's a feat we have undertaken this weekend.

Squirrel's been riding a hand-me-down bike all summer.  It's too small for her (her knees touch the handlebars) and it has training wheels on it still.  She didn't care--I only let them ride up and down our street, so it's not like she was flying around town on it or anything.  She didn't care--until she had a friend from school over to play, and her friend said that she learned to ride a bike in Kindergarten.  She didn't care--until the neighbor across the street, who's two years younger, learned to ride this summer.  So now, she cares.  She wants to learn to ride without training wheels.

Some people say we should've pressed this issue years ago.  Most kids lose the training wheels well before they are nine years old.  But Squirrel's not most kids.  She has a lot of trouble with balance and coordination--which bike riding requires a lot of!  She has a low frustration-tolerance threshold and gives up very easily.  She is strong-willed and defiant much of the time, so it's hard to teach her something new.  I'll admit--we didn't push the issue partially because we didn't want to teach her.  But we also didn't push it because she lacks the skills to be successful in the typical ways.

But...she wants to learn to ride a bike, and so I have taken it upon myself to teach her.  We bought a new bike with garage sale earnings (she sold a lot of toys to buy herself a new bike!)  She picked one that was green and black with orange tire rims--no girly pink or purple thing for her.  It's a sharp little bike, and she wants to ride it so bad.

We've tried a lot in the past few days.  We go outside for 20 minutes at a time--she doesn't tolerate longer periods, and I find myself trying really hard not to snap at her for the way she's expressing her frustration at me.  20 minutes is enough for each try.  She's not making much progress--I've let go of her for five, six, seven seconds, but she always falls.  She just doesn't understand how to balance her body.  She leans to one side, but she doesn't realize she's doing it.  She slides sideways on the seat, but doesn't feel that she's crooked.  She forgets to steer when she pedals, and forgets to pedal when she steers, and can't figure out the brake at all!

I've explained to her what to do.  I've shown her what to do.  I've pointed out her stiff elbows, and her leaning body, and her bottom in the wrong position.  We've watched you tube videos about how to ride.  The neighbor girl gave her pointers.  Daddy took a shot at helping her.  The thing is, you can't really explain to someone how to ride a bike--you just have to feel it for yourself.  The proper tension in your arms.  The curve of your elbows.  The movement of the handlebars in relation to the balance of your body.  These things can't be taught, they are just learned.

She will learn this.  It may take her longer than it takes most kids.  She will probably fall a lot more, and feel more frustration, and want to give up more times than your typical kid.  But when Squirrel puts her mind to something, she figures out how to do it, and I know this will be no exception.  I hate watching her struggle more than other kids do.  But I've seen her struggle before, and I know she'll make it.  And come out stronger and more self-confident for the extra work she endured.  She's a tough girl.  She'll make this right-of-passage and be pedaling around the block before we know it!

Then I can move on to worrying about the next thing.  Like how she fails to notice cars pulling in and out of driveways on her way around the block. (*gulp*)

Finding Our Place

Sometimes I feel like an impostor in the special needs community.  My children both have "invisible disabilities," in that most people would never know by looking at them that there's anything different about them.  My children are extremely bright and gifted intellectually.  They can walk, run, and otherwise move just like other children.  They get excellent grades in school, participate in extra-curricular activities, and are completely typical kids for the most part.  Spend some time with them, and you may see some little quirks or behaviors pop up, but nothing that says "special needs."

Sometimes, I see the ways that my kids are just like typically-developing kids, and I forget that I am part of the special needs community.  Call it moments of denial, I guess--but it's also something more.  I am just so used to the way my children react to, and interact with, and move through the world around them, that I don't see it as unusual anymore.  Spinning, toe walking, chewing clothes, hands over ears, even meltdowns--they are common and expected when we are out in public.  It's our "normal," if that makes sense.  And, of course, I love them just the way they are, quirks and all.  In fact, I value those qualities in them that would make them "special" as much as I value any of their other qualities.  It's who they are!

But sometimes things happen to bring me back to reality, and assure me (or perhaps, remind me?) that we are indeed a special needs family.  Friday was one of those days.

On Friday morning, I met with Squirrel's teacher to tell her about some of the challenges and issues that Squirrel has in the classroom.  I told her how sometimes Squirrel falls out of her chair, and how she can never sit directly on her bottom, but is always on her knees, or on one foot, or in some other wacky position on the chair, because she's trying to find a position that gives her the best sensory input and helps her keep her balance.  I told her how she fixates on a strange noise, or a smell, or a wonky fluorescent light, to the point that she stops hearing the teacher at all.  I explained that she chews on everything, because it provides her with sensory input that allows her to focus better.  And how she has trouble with oral directions because of auditory processing problems, and trouble with written directions because of visual-motor delays.  And as the teacher expressed surprise and very honestly said she didn't know a lot of these things existed or could cause a child problems, I was reminded--I have a special needs child.

Later, I joined some friends for lunch at one of their homes.  As all our children were playing outside together, and all the moms sat and visited, I realized I was the only one jumping up every few minutes to intervene or remind my son how to play appropriately.  "No, Munchkin, we don't grab our friends.  We need to take turns with the toy--give it back please.  No, we don't knock someone down when they're in the way, we say 'excuse me.'  Honey, he doesn't want a hug right now, please let him go."  And I realized again--I have a special needs child.

We left there and stopped at the store to pick up a new bike for Squirrel.  There we spent forty minutes carefully making our way through the store when the errand should have taken ten.  But successful trips to the store for us involve allowing each child to touch and feel and look at and examine whatever they feel they need to touch, feel, look at or examine.  It requires that we move along carefully so that Munchkin has time to react to each noise, since he hears them all and is trying to sort them out and make sense of them.  It means fielding seventy-five requests from Munchkin to look at the Hotwheels aisle, and then waiting until he's had his fill of looking before moving on.  To skip any of these steps will ensure a meltdown.  And as I longingly wished that this errand could have been done later, without any children in tow, I had to acknowledge again--I have special needs children.

Finally, we ended up at swim lessons right before dinner.  Although it was a beautiful, warm sunny day, it was also pouring down rain for most of the hour of swimming.  (Very strange weather!)  So I reassured Squirrel twenty times that it was safe to swim in the rain as long as there was no lightening.  To no avail--she stayed anxious and couldn't wait to be done.  And I knew it again.

But what really made this message hit home on Friday occurred while I watched the kids swim.  There was a mom with a child not much younger than Munchkin--maybe four or five.  He caught my eye because of the swim diaper sticking above his swim trunks as his mom coaxed him to jump in.  I watched as he threw his hands over his ears when the lifeguard blew his whistle, and I saw him jump back when another child swam into him on accident.  I watched him freak out when it started to rain and hide under the chair until he was ready to come out.  I watched his mom pull double duty trying to give her other children the attention they wanted as they played in the pool and still keep an eye on her little boy.  I saw her panic when she couldn't see him for a minute, then relax when she realized he had run over to the sand area.  And I knew this little boy was just like Munchkin, and that was us just a year ago.

Then I thought, that's still us!  We've just become more comfortable in our roles.  Whatever each day brings, I do have children with special needs.  We are indeed a part of the special needs community.  And I embrace our place.  I'm proud of my children.  I'm proud to be able to advocate for them and for others in their situations.  And I'm proud to be part of such an amazing, special group of parents as those who have children with special needs.

Roller Coasters and Rides: No, Real Ones! Not Metaphorical Ones!!

We took the kids to Six Flags Great America this week, because they both had tickets from the Reading program at school.  I wasn't sure how it would go.  I mean, crowds, heat, lines, high intensity rides, exhaustion, endless walking--doesn't really seem like a recipe for a good time where my kids are concerned.  Or for me either, for that matter.  But they were excited, and Daddy and I were committed, so off we went.

I was told to get the Special Needs pass for Munchkin.  I debated whether we'd really need it.  I mean, how long could the lines for the kiddy rides be?  Surely he could handle them?  I don't know what I was thinking.  Thank goodness the voice of reason (my hubby) spoke up and said to get it.  It was, quite literally, what made our day so enjoyable.

So, how does it work, you ask.  He got a pass with his name on it, and the number of people in his party written on it.  So when he wanted to get on a ride, we walked up to the exit instead of standing in line.  For the busier rides (the coasters mostly), they wrote in a return time based on the wait time for those standing in line.  So if the wait time was one hour, we still had to wait one hour to ride.  But we were free to leave and come back at our assigned time.  For the kiddy rides, though, they put us on within one or two rides after walking up to the exit.

At first, I felt guilty using it.  I mean, we were skipping the 20 minute wait for the bumper cars or the spinning ride.  We were getting on when all these little kids were waiting in the line still.  We were going ahead of kids who had been waiting patiently.  I felt bad.  I thought, "Everyone's looking at us wondering which one of us has something wrong with us."  Especially since no one can tell that Munchkin has any kind of disability when looking at him.  Or, as we waited with people in wheelchairs, or a little blind boy on one ride, or the child with the "obvious" autism, I felt like an impostor.  But after awhile, I quit caring what anyone thought.  I mean, by waiting at the exit, Munchkin was able to spin in circles and race up and down the exit ramp, instead of standing shoulder to shoulder with other people in lines.  He was able to cover his ears when the horn blew to start the ride without anyone looking at him funny.  He could watch the ride a few times before deciding to ride it, without any pressure to hurry up and get on.  And for the bigger rides, we could walk around, get a snack, ride something else, or people watch in the shade while we waited for an hour for the ride.  Sure beats standing packed into lines, sweating and smelling other people's sweat, hearing everyone else's conversations, watching the teeny-boppers make out in line.

(I enjoyed it too, can you tell?  In fact, my hubby commented that he doesn't know how he can ever go to Great America with the high school youth group again, if it means he has to wait in lines!  Yeah, we all benefited from the pass...)

Not only that, but had he been required to stand in a line for even 20 minutes, we would have been exhausted from holding on to him for that time, so that he didn't hit anyone, run off, or just bump into everyone.  He would have had a serious meltdown by the second or third ride, and we would have had to leave, or take turns holding him while the other parent took Squirrel on the rides.  He, and we, would have been miserable.

We decided not to get a pass for Squirrel.  I'm not sure we made the right call.  When she and I went on a roller coaster that Munchkin was too small for, we had to wait in line for 75 minutes.  She kept asking why we couldn't use the pass.  I told her it was because she didn't have trouble being in lines like Munchkin.  She doesn't get overheated as easily as him, she doesn't have meltdowns when she's overwhelmed by other people, and she's able to be still where he is not.  But I'm not sure I made the right call.  Because she does have trouble with crowds--she gets agitated when people get too close to her--so the line we waited in was torture for her.  She chewed her clothes (which she only does when she's stressed) and left big gaps between her and the person in front of her so she could have some space.  She stood on the bars between the aisles because it made her feel less crowded if she could see over the adults around her.  Towards the end of the wait, she curled up in a ball and started picking at the dirt on the ground--which she also does when she's stressed.  She refused to talk to me after about 30 minutes in line--she needed to reserve her energy to deal with the negative sensory input on her body.  It was obviously very stressful for her.  She was fine once we got on the ride, so it didn't ruin her day.  But she did choose not to ride anything else that Munchkin couldn't ride, so that she wouldn't have to wait in line.

All in all, we had an awesome day.  Both kids rode their first roller coasters, including the Demon, which has loops and corkscrew turns and is really fast.  (Remember what I said about Fearless?  Yeah, once again, my kids proved it!)  They loved it and can't wait to go back next year.  And we all enjoyed the family time and a really great day, thanks to that pass!  Without it, we wouldn't have made it more than an hour or two.  Maybe when they get older, we won't need the pass.  But if we do, we'll use it without caring what anyone thinks.

Just one more little side observation:  Hubby commented on how they gave us a pass without asking any questions.  They didn't ask why we needed it, or what accommodations we would need...they just wrote Munchkins name on it and explained how to use it.  We decided that this was probably because there is no politically correct way to ask, "What's your disability?"  But I think it's also because the park realizes what many people don't--that not all disabilities are something you can see.  They gave us a guide to the park that was really cool--it broke down each ride by not only physical limitations, but also emotional/psychological ones--fear of heights, high anxiety, claustrophobia, fear of dark, etc.  To me, it was a hopeful sign that people are starting to "get it" when it comes to kids with hidden disabilities!

Six Things For Six Years--A Birthday Post for Munchkin

Six years ago today we were blessed with our Munchkin.  After four days of on-and-off labor; after several false "this is it" moments; after four days of no-sleep and contractions that ranged from annoying to downright painful, I was given a mild sedative and the instructions to go get a good night's sleep and come back in the morning to be induced.

And that's exactly what I did.  And four days after he was scheduled to make his debut, Munchkin finally joined the world outside my womb.

So today, in honor of his sixth birthday in this world, I present to you my "Six Things I Love About Munchkin" list.  Sure, there's many more than six, but these ones are my absolute favorite things about my little boy.

1. HIS SONGS.  In fact, if I was more talented, a fitting tribute would be to set this to music of my own making and sing my list.  I love the way Munchkin sings.  He can hear a song once and memorize it.  Of course, his songs of choice were from Thomas movies for a long time, but he's branching out now.  When he plays by himself, he's either narrating his play, or singing a song.  (In fact, right now he's playing with Action Links and humming the Smurf theme.)  He often sings one octave higher than the rest of the world--but perfectly in pitch!  It's hilarious and lovely at the same time.  This year his language and imagination have both grown enough for him to start making up his own songs.  And so he sets his requests, his refusals, his thoughts about his family, his thoughts in general to music now.  (Such as the other day, when I said No, we can't stop for ice cream on the way home.  And was then entertained for the twenty minute car ride with a lovely number about his love for ice cream, his favorite flavors, and his lack of understanding as to why mom won't get him ice cream when he wants it.  It was gorgeous.)
2. HIS GIGGLE.  Have you heard this boy laugh?  Not that fake "heh-heh" thing he does.  No, that makes me nuts.  No, I'm talking about his real laugh.  It comes straight from his heart and literally explodes out of his mouth.  He has made me forget why I'm mad at him more than once with that laugh.  He's made me smile when I'm tired and laugh along with him.  You can't hear him laugh without joining in!  It's the most beautiful sound in the world, and you don't even have to work to solicit a laugh--he laughs all the time!
3. HIS LACK OF RESERVATION.  Sure, it's a little unnerving when he talks to perfect strangers everywhere we go.  And I have to keep a super-close eye on him because he will walk off on a whim and be lost before I blink.  But I love the way he just wants to interact with every part of his world.  I love his friendliness, his curiosity, his self-confidence.  And he can sure charm the ladies!
4. HIS HUGS.  You have not had a hug until you've had a Munchkin hug.  He grabs you around the neck, wraps his legs around your waist, and hugs with his whole body.  Long, tight squeezes with these happy little "mmmmm" sounds involved (from both of us!)  His hugs fill his sensory needs on a practical level, but they also fill us both with love and happiness.  If  there was a way to bottle that feeling you get when he hugs you, I would carry it around with me for the times we're apart--he makes me feel that good with his hugs. And it's not just me--he gives them freely to everyone he loves!   He usually follows his hugs with a kiss.  We used to have a ritual--a kiss on each cheek, one on the forehead, one on the chin, and one on the nose.  First me, then him.  Now it's just a kiss on the nose.  I love hugs and kisses from my guy!
5. HIS MIND.  He is a thinker.  He wants to know how everything works.  He wants to know why things happen.  He asks a million and ten questions a day.  He never stops talking.  And yes, it makes me absolutely batty at times, but I am a teacher at heart and I love teaching my boy.  He is smart--really smart--and his physical and verbal limitations don't always allow people to see that.  But I see his mind at work everyday and I am amazed that my child is probably going to be smarter than I ever was!
6. HIS JOYFUL HEART.  Seriously, the child is always happy.  Even when he's tired, or cranky, or sick--he bounces right back from it and reclaims his true nature.  He has a huge smile that lights up the room.  His eyes are usually twinkling with excitement or mischief.  He jumps, runs, hops, skips, crashes, and tumbles his way around the world with so much energy and life.  He loves everyone and everything unconditionally and is quick to forgive and forget hurts against him.  He is honest and obedient and generous and kind.  He is a beautiful child, inside and out.

There it is.  Six things for my six-year-old.  I love my Munchkin with my whole heart and thank God for him every single day.  He has changed my life forever and taught me so much about myself.  God knew what He was doing when He created this little boy just as he is, and placed him with us.  I think ahead to the next six years, and then the next, and the next, and I have no idea what they will hold.  But I look forward to finding out!

HAPPY BIRTHDAY, MUNCHKIN MAN!

Choosing Wise Words: Advice from Judge Judy

Being at home has led me to watching way more daytime TV than I care to admit to.  But sometimes I stumble across something worthwhile, which makes me feel a little better about my viewing choices.  Judge Judy is one of those shows.  And I can watch it with the kids in the room, because Judge Judy says innocent things like, "You, Sir, are a nincompoop," which makes Seth laugh hysterically and walk around repeating that line for the rest of the day.

Yesterday I was watching Judge Judy while I folded the ten million loads of laundry that I finally got around to folding.  She had your typical deadbeats and dummies on, then the soundbite for the next segment played before the commercial.  It had a young mother saying, "Ma'am, my son is severely autistic," with the equally young dad interrupting her to say, "Judge, she always says that but I just don't buy it."  My interest was piqued. 

During the commercial, my mind raced back to those days before and immediately after Munchkin's diagnosis.  As I sat remembering, the show came back on and I watched the drama unfold, laundry forgotten in my lap.

The case was about dental bills that dad refused to pay for a five-year-old boy.  As Judy berated mom for letting her child's teeth rot to the point that he needed thousands of dollars worth of dental work, mom interjected with the fact that her son was autistic, and dad argued with his point.  And I thought, "Oh, that poor mom!  She's going through so much, and dad is such a jerk!"  Then Judge Judy starts into mom...

"Why do you say he's severely autistic?"  Well, I had him tested.  "Do you have a copy of the test results?"  Yes, right here...  (As she looks them over...)  "Does he speak?  Is he verbal?"  Well, yes.  "Does he dress himself?  Feed himself?"  Well, he needs a little help dressing.  "Does he make eye contact?  Show affection?"  Yes, but...  "Is he in school?  Where does he go to school?"  Dad speaks up: "He goes to the public school.  He's in a regular kindergarten class.  He's extremely intelligent and doing fine there."  Mom says, "Well, he has an aide."  Judge Judy yells, "Well lots of kids have an aide!  That doesn't make him severely autistic!"

Now, at the start of all this, my heart was going out to the sobbing mother.  She explained how he was just diagnosed, but she's always known something was different about her son.  She said that dad is in denial and won't support her or him.  That he fights her about therapy and all that.  I was remembering when Munchkin was first diagnosed, and my hubby was less than on board (though not at all to the extreme of this deadbeat dad!)  But as Judge Judy continued to question her, I immediately saw where this was going--this was not a "severely autistic" child and mom was clearly trying to either, a: paint him in that light to better win her case, or b: come to terms with her child's diagnosis and taking the extreme view.

Yeah, I related to this too.  When Munchkin received his diagnosis of PDD-nos, I immediately (after consulting Google) went through a "God help me, my child has autism" period.  I convinced myself that all my hopes and dreams for this child were out the window, down the drain, over the moon...He would obviously never work, never get married, and live with us until we died and left him with no one to care for him.  Luckily, that period was short-lived, because anyone who knows Munchkin will tell you that this is the furthest thing from the truth!  This kid is going to do amazing things with his life, not in spite of his differing abilities, but more likely because of them!!!

Back to Judy.  She consulted the diagnostic papers in front of her and said what I was yelling at the TV by now, "Ma'am, it says her your child's diagnosis is PDD-nos."  Yes, that's on the autism spectrum.  "I know it is!  But that's not severely autistic!"  (Mom crying openly now.)  But everything is so hard for him!  And dad won't support me!

Then Judge Judy said something very profound.  I hope the mom was really listening, because it will make all the difference in how she takes the rest of her journey with her son.  She said, (and I paraphrase,)


"You need to be careful with your words.  Especially when describing your son.  Lots of kids with this diagnosis outgrow their symptoms by eight or nine years old.  What you are told about a child at 18 months, a year, five years, is not necessarily going to follow them for life.  But your words will."


She acknowledged then that mom was in a difficult place with coming to terms with a new diagnosis, and urged her to do everything she could for her son, and not make it worse for him than it really was.  Then she told dad to step up, support mom and their son in this journey, and pay the dental bills.  (Cheers!!!)

I don't know what the next case was about, because I was still thinking about this one as I continued to fold laundry.  As always, Judge Judy said what needed to be said without mincing words.  I wish someone had been so bold with me, but I did come to the same conclusion on my own, so I guess it's all just part of the grieving process and works out in the end.

I think her advice is Pure Genius.  The labels we assign to our kids will follow them for life.  The emotion we put behind those labels will follow them.  The shame or pride we put behind those labels will follow them.  With special needs children, it's so easy to become fatalistic in our thinking.  And I don't think it's just a one-time thing you go through in the early stages of coming to terms with their diagnosis.  No, I think it continues to pop up in our thinking at different stages of their life.

My child is going to be the victim of bullies.  It's inevitable.  He'll never have any friends.
My child will never learn to drive.  He'll be the only one who doesn't get his license.
No one will ever want to date my child.  She'll never go to the prom.
I'll never get grandkids.  My child will never grow up and get married and have kids.

Maybe it's true for some people.  I know children who really will never drive, or date, or have kids.  Their parents, perhaps, are justified in feeling fatalistic and defeated.  (Though most of them don't.  Most of them consider it a privilege to have been given this special child to love and care for until God calls them or the child home.  These are my heroes.)  But I can't be negative in my thoughts.  Munchkin will always be a little quirky.  But I can't limit him by his quirks.  His diagnosis is not a sentence handed down by the Judge.  There's no limit to what he can accomplish!

No, I will choose my words carefully.  My boy is nothing short of amazing.  That's the best word I can choose for him!  He's amazing.  A miracle.  My boy.

Little Love Notes

We like to leave notes for each other in our house.  Little love notes left on a pillow, or taped to the bathroom mirror, or posted on the computer screen.  I think I started it with notes in Squirrel's lunch box when she went to school.  Then I added notes to Munchkin's lunch this year too.  And then (miracle!) Munchkin learned to write and started leaving notes around the house for everyone!  Simple little things:
I love you.
Your my best mom.
I love my sister.
And my favorite: No dads work on Saturdays.

Then, not to be undone, Squirrel started leaving her own notes for everyone.  And now, well, it's common place for us to leave each other little notes in places where we know they will surprise the other person and make them smile.

Except there's not as many smiles lately, because Squirrel has taken to leaving notes of a different kind.  Most of them are taped to her bedroom door, which is usually closed these days.  The words vary slightly, but the sentiment remains the same.  Tonight's note said, "Don't come in unless you knock first!  Just don't hurt your fist."  Then that was crossed out--now it just says, "KEEP OUT!!!" scribbled in marker, with a big angry face drawn next to it.

This kind of sums up my dear child's attitude lately.  She's cranky, irritable, snotty, argumentative, rude, antagonizing, and emotional.  She doesn't do anything I ask her to do, and I don't know if she's ignoring me, not really hearing me, or just not processing what I ask.  But if I repeat myself, she snaps at me and gets upset at me for nagging her.  It's not like I'm asking her to do anything major...I just want to know if she's had lunch yet!

She keeps picking on her brother--she tells him he's wrong all the time (which she KNOWS will make him upset).  She won't let him in her room, which has never been an issue before.  She's bullying him when they play together.  She keeps hitting and pushing and pinching him.  I know all siblings fight, but this is getting ridiculous--the intensity and the frequency of her mistreatment of him is escalating big time.

She walks around on edge.  She's angry all the time--except when she's sad.  She looks ready to either throw a tantrum or burst into tears all the time.  She's huffing and stomping her feet and screaming and slamming doors.  She's talking back to everyone--even people she'd never dream of being disrespectful to before.  She even tried to hit me today.  She hasn't done that since she was a toddler.

Is it just summer break wearing on her?  Are we too relaxed?   Not enough of a routine for her?  Too much down-time?  Too much electronic-haze--you know, that funk brought about by too much time in cyber-world, and not enough interaction with real breathing people?

Is it something more?  Is it a mental issue?  Should I be calling her psychiatrist?  Are her meds not working?  Is it because she's not seeing her counselor anymore?  Is she more depressed than I realize or is this just normal pre-adolescent angst?  And is she old enough to blame this on hormones anyway???

Am I being too lenient with her?  Am I letting her get away with too much?  Excusing her behavior as part of the ADHD or the SPD when I should be nipping it in the bud?  Giving her too much slack and too many chances to fix it?

I don't know what to do.  I don't want to make excuses for inappropriate behaviors, but I also don't want to ignore red flags and warning signs.  I don't always know when to view something through my special needs lens, or my mommy lens, or some other lens.  I can't always trust my instincts, because I don't understand everything going on with my daughter, and I don't want to demand more of her than she can give.  But I also don't want to be a doormat, or allow her to treat anyone else like one.  I seem to be yelling at her a lot, which makes me feel all kinds of bad and guilty.  I feel guilty even putting this in writing--like I'm painting her in a bad light, or exposing our secrets to the world.  But I set out in writing this blog to be honest about the struggles we face, and to reach out to others both to give and to receive help.  And I kind of need some help with this one.

You know, I kind of want to write her a note right now.  One like this:

Dear Squirrel,
You are driving me absolutely bonkers lately!  Oh, and Munchkin too.  Can we please get this straightened out soon so all the bickering and screaming and crying can just stop already?  
Sincerely,
Your exhausted, frustrated, confused Mommy


Yeah, I won't though.  I don't think that will help matters any.  Instead I'm going to write her a note telling her how much I love her.  (Because I really, really do.)  Maybe it'll help make tomorrow a better day than today was.

Someday

When my hubby and I were dating, we used to talk about all the things we were going to do someday.  When you are young and in love, all the promises of the world are at your fingertips.  Someday we were going to grow up, and have jobs we loved, and get married, and have a nice house, and have a few kids, and watch them grow up, and take awesome vacations, and...

You know what was never in our plans for someday?  Reality. 

I'm pretty sure we never said, "Someday we're going to have two imperfect children.  Someday we'll wonder what's wrong with them and is it really supposed to be this hard?  Someday we'll struggle to come to terms with their diagnoses.  Someday we'll have to teach them things that other kids just figure out on their own.  Someday we'll have to think about the best schools to meet their needs and fight for the services they're going to need to succeed in those schools.  Someday we'll be on a first-name basis with psychiatrists and neurologists and social workers.  Someday we'll deal with meltdowns and depression and anxiety and motor delays."

Nope, I don't think we ever planned for that.

You know what else never entered that conversation?  We never said, "Someday we'll have to use our savings for therapists and doctors.  Someday those vacation plans will fly out the window along with any extra money we might manage to find.  Someday we'll struggle to pay the bills and put food on the table and still keep the kids in therapy and in the kind of social groups that will help them mature and grow."

And I know we never said, "Someday we'll cry because our plans for the future all have question marks after them.  Someday we'll worry endlessly about our kids because of bullies, and teachers who don't understand, and strangers who stare and judge us and them.  Someday we'll wonder if it will ever get better, and someday we'll celebrate every little tiny milestone because of all that went into reaching them."

And in all of our plans for Someday, we never, ever said, "Someday we'll struggle to connect with each other because we'll be exhausted from meeting the needs of our kids day after day after day.  Someday we'll try really hard just to get a date night once a month, because we'll be desperate to reconnect with each other."

Yeah, isn't it funny how our plans rarely end up just like we thought they would? 

But do you know what else we said?  "Someday we'll spend all our free time together and not have to go weeks without seeing each other.  (Ours was a long-distance romance while I finished school.)  And someday we'll be able to just sit and relax with each other, secure in our unending love and commitment to each other.  Someday we'll look back on these days and how in love we are, and wonder how it's possible to love each other more than we do now." 

I guess some things DO turn out the way we plan.

Happy Anniversary to my love, my friend, and my partner in this crazy, unplanned life.

"For I know the plans I have for you," declares the Lord.  "Plans to prosper you, and not to harm you; plans to give you a hope and a future."  Jeremiah 29:11

My Mama Always Told Me, You Are What You Eat (Turns Out She Was Right)

I've been reading a lot lately about--I mean, I'm off work for the summer, and actually have time to pick up a book or two again!  I prefer novels that allow me to lose myself in someone else's life for a few hours, but I like to try to balance out the mindless drivel with something informative and useful once in awhile.  So I've been checking out a lot of books at the local library (but not the one that insulted Munchkin, if you heard that story) about some of the issues my children are dealing with.  I figure I might as well approach the coming school year with more information and tools to help them succeed.  Plus all these books have little anecdotal stories about other people's kids, many of which make me feel so much better about my lot in life.  Let's face it--when your own "issues" try to overwhelm you, reading about someone who has it a lot worse than you makes you appreciate that your issues are not THEIR issues.

Anyway, all of these books have what I'd call a nutrition component in them.  Eat this, and you'll focus better.  Eat this, and you'll behave better.  Don't eat this, or you'll be out of control.  And supplement with this, this, and this, or it's all for nothing.

I go back and forth on the diet issue.  (And I don't mean my own diet--though I tend to go back and forth on that one too!)  No, I mean what my kids do and don't eat, and whether or not it actually makes a difference.

Way back when (which was really less than 2 years ago, though it seems much, much longer), when we were still in the agonizingly long process of having Munchkin evaluated and eventually diagnosed by Dr. N., our neuropsychologist, several of the therapists evaluating him mentioned these "blank stares."  We'd seen them too--he would be doing something, and suddenly go into his own little world for a few seconds.  He wouldn't hear you or see you until he snapped out of it, and then he'd go on as if nothing had happened.  We laughed about him going into his own little world and how spacey he was.  We had no idea that these were actually seizures until all these therapists started showing concern!  So we followed Dr. N's advice and made an appointment for an EEG--four months later.  Yep, that was the soonest they could get us in for the 24 hour EEG she wanted him to have. So in the meantime (and armed with a new diagnosis to Google) I started researching.  And one of the first things I read about was something called MSG.

Like many of you, I thought MSG was that stuff they shake on Chinese food.  But I read that MSG can cause hyperactivity, meltdown behaviors, sleep disorders, and--wait for it--seizures.  And then I read more and found out it's in everything!  Anything that has been processed most likely contains chemically-created MSG.  And then they go ahead and add it in as a "flavoring" too.  Feeling horrified that I had been poisoning my children for so long, I went a little nuts.  I emptied out our cabinets--I read every label and threw everything that had anything "bad" into boxes and trash bags.  (Which I donated to the local Food Pantry, feeling only slightly guilty that I was probably poisoning other people's children now.)  Then I spent three hours in the grocery store replacing everything in our pantry with healthier alternatives.  And I followed a dye-free, preservative-free, MSG-free diet with my children religiously for several months.

And Munchkin's seizures stopped.  Completely.  His meltdowns became less frequent, his hyperactivity seemed to be less extreme, and he started sleeping through the night more often.  It was a small fix in most ways, but the absence of seizures was amazing to me.  I was sold.  (The fact that my migraines stopped for the most part, and my stomach issues cleared up was also an added benefit.)

When the behavior problems began to intensify again, I started looking at what else we should cut from his diet.  I'd read a lot about the Gluten/Casein Free diet for kids on the spectrum.  But he is such a picky eater, that I hesitated to take chicken nuggets, yogurt, milk, cereal, and pb & j from his diet--that would leave him with nothing to eat!  We decided to go gluten free and see if it helped, and it did to an extent.  It cleared up the eczema he'd had since infancy, and made him more "regular" in the potty sense--which apparently made his tummy feel better, and I hadn't even known it was hurting him!  Actually, I don't think he realized it either--he told me a few months into the diet, "Wow, Mom, my tummy doesn't hurt anymore!  I didn't even know it hurt me before but it's all better now!"

We still follow a dye-free, preservative-free, mostly MSG-free diet today.  ("Mostly" because that stuff is in everything!  It's so hard to eliminate it, unless you're going to cook everything from scratch and never use a boxed or canned food again. And I am not willing to make that kind of commitment.)  I am a label-reader anytime we try something new.  I ask to see nutrition information at restaurants before we order.  I bring a lot of our own food when we eat somewhere outside of our own home.  But I'm also less nutty than I was when I started this.  I do allow my children to have Popsicles at a friend's house.  I let them eat birthday cake at the party.  For awhile I didn't--but I got really tired of telling them "No" all the time and feeling like they were missing out on a part of childhood.  We suffer the consequences afterwards--usually extreme hyperactivity and some intense meltdowns will follow for the next 24 hours or so.  We're not as strict with the gluten restriction anymore either, mostly because it's so darn expensive and so hard to find substitutes that actually taste good for my picky little guy.

I guess there is something to this diet component.  It seems that a diet change can fix whatever ails you these days.  I read about a mom today who's suffering joint pain.  Every other comment on her Facebook status was from someone who knew someone who fixed their similar health woes by eliminating or adding something to their diet.  I do know that adding protein to our breakfasts helps Squirrel focus better.  So do the DHA supplements.  Adding a fruit and veggie supplement to Munchkin's daily regime has helped him finally put on some weight.  And cutting caffeine and caramel coloring out of my diet cleared up my stomach pains.

Well, I'm not ready to go all food-Nazi on our cabinets again anytime soon, but I guess I'll continue keeping an eye on our diets.  It might not make all the difference, but every little bit helps!