A Long Time Ago, When I Was Five

That's how my son started a conversation with me a few weeks ago.  "Mom, do you remember a long time ago when I was five, and we took that vacation to Mississippi?" You mean, last June?  Just a mere 13 months ago?  Yes, I remember it.

I guess when you're young, last summer does seem like a long time ago.

Today, this child who was five a long time ago turned seven.  Funny, but to this mommy, five doesn't seem so long ago.  Neither does four, or three, or two, or one.  It seems like not very long ago at all that I brought that chunky little baby boy into this world.

I've spent the last few days reminiscing about the early years with our Munchkin, and trying to understand how seven years have flown by so very fast.  It's got me misty eyed and shaking my head in amazement.  I think about all we've gone through with this child, and all the joy he has brought us, and I just can't believe seven years are gone already.  Maybe it's because he's my baby, because I know I'll never again live the infant and toddler and preschool years with my own child again.  Maybe it's looking at him and still seeing his baby face in that big boy staring back at me.  Maybe it's the knowing that my little man will continue to grow up and grow older, and will start to smell like a big boy instead of that sweet little baby.  He'll start to avoid kisses and hugs from his mom when his friends are around.  Maybe it's fear that my baby won't be my baby anymore.  But this birthday is hitting me hard.

Munchkin told me last week that I could give away his Thomas stuff.  He said, "Mom, I don't need those tracks anymore, or the buildings either. You can give them to some little kid.  I'm too big for them now."

So I sat in his room yesterday sorting through his toy boxes, putting all the wooden tracks in one pile and all the gray tracks in another.  Finding which pieces go with which building sets, and locating all the blocks for the Thomas Lego set.  In the midst of wondering if I could get a good price for these if I sell them, or if I knew anyone who would love them as much as Munchkin did, I found myself looking at the faces on these trains and crying.

And yes, I felt a little foolish.  I mean, they're just toys!  And yet, these Thomas toys mark the end of an era in his young life.  Thomas dominated his play, his decor, his clothing, and his thinking for many, many years.  I found myself lining up the trains as Munchkin used to do, all the faces looking out and lined up on an imaginary, perfectly straight line, remembering the hours he would spend doing this.  I remembered his evaluation, where they asked us if he had any obsessions, and my husband and I looked at each other and shrugged, "Not really."  The doctor expressed surprise at that, and I said, "Well, he really likes Thomas.  That's all he'll play with or watch on TV."  As she asked us more, she looked at us and said, "That's what we call an obsession."  It was our first clue that something bigger than we had let ourselves imagine might be wrong with our child.

And I continued to remember...Thomas was also the toy we used to teach Munchkin how to play with others.  It was the thing that allowed us to enter his world.  Thomas taught him so much language and vocabulary, and, even though his first conversations were scripted straight from his beloved videos, they were still conversations and paved the way for further language development, which in turn led to better eye contact, which developed relationships with others outside the family.  We all spent countless hours in Munchkin's room, entering his world through a maze of tracks and bridges and tunnels and catastrophes (there were always catastrophes in Thomas!).  As much as Munchkin learned through playing with these toys, we learned even more about his unique mind and creative spirit as we played with him.

So, yeah, his beloved Thomas is also treasured by me.  Is it any wonder the simple act of packing up these toys brought so much emotion to the surface?

Thomas has been replaced by other obsessions, mainly Angry Birds.  And Munchkin has learned how to carry on a conversation with another person.  He's learned to make eye contact, and he is getting better everyday at sharing toys and taking turns with others and following rules and allowing others to dictate the play on occasion.  His new obsessions definitely play a role in this learning, just like Thomas did for so long.  And, as with Thomas, we all take turns playing with his Angry Bird toys.  They now provide that glimpse into his developing brain that Thomas did for us before.  And they allow us to enter his more sophisticated, more "grown-up" world.

But Thomas will forever remind me of the little boy he was a long time ago, when he was five.  As I placed most of the trains aside to give away or sell, I stuck a box of wooden trains and tracks in the closet.  I find myself unable to part with them yet, even if he is ready to let them go.

Happy Birthday, Big Boy.  Your Momma loves you intensely--the precious memories of who you were not that long ago, the absolutely remarkable child you are as you turn seven, and the glimpses we get everyday of the amazing young man you are soon going to be.

Way Down In Crown Point, In Indiana...

You know how, before you had kids, you would think about what it would be like to be a mother?  You know, like how your children would look and act.  How you would play with them and do certain things with them.  How you would NEVER say "that" but ALWAYS do "this."  Perhaps you, like me, thought about those things you loved and hated from your childhood, and imagined how your children would do those things--or not!  You probably remembered those important lessons you learned, and how you learned them, and wished for the same opportunities for your yet-unborn children.

And then, your children came along.  And nothing went quite according to plan.  And then the diagnosis came, and plans went up in smoke.  Or maybe just changed.

I grew up going to church camp every summer.  I loved it!  Loved feeling grown-up staying away from home for a week.  Loved the friends I made every year there.  Loved the worship, the lessons, the campfires, the games, the swimming, the canoes.  Still value so many memories from those days at Camp LRCA.  Loved learning so much about God, and competing with other teams to memorize the most scripture during the week, and opening up to men and women of God who knew so much more than I did about the Bible.

Camp made "church" fun and exciting to a child.  And I always knew that I wanted my kids to go to camp someday too.

So when it turned out that those imaginary children who were born eventually had very real problems, I was sad about a lot of things they might miss out on.  Like camp.

How could I send Squirrel off to spend five nights away from home in a cabin filled with eight girls laughing and giggling through the nights?  She needs her full nine hours of sleep, and struggles so hard to get it even at home!  How could I expect her to deal with the many sensory issues that camp brings with it, like bug bites and sticky, sweaty days and food that isn't prepared like she would want it and overwhelming noise and activities?  Who would she turn to when she needed help dealing with all the stimulation?  Who would understand that she wasn't being defiant, but was overwhelmed?  Who would deal with the inevitable meltdown that would leave her in a puddle of embarrassed tears and shame?

And Munchkin--how could I ever send him away overnight with a bunch of typical kids?  He needs too much one-on-one to deal with the stimulation and the frustrations and the demands of a camp setting.  This may never be possible for him!

It was a hard pill to swallow, especially as other kids went off to camp each summer and I realized fresh every year that my kids might not ever do this.

But this spring, my friend from college contacted me.  She's now the manager of good old Camp LRCA, and wanted to know if I would come out for the week she was Dean.  I got pretty excited as I realized that my children actually fell into the age range for this week of camp, and that it was a short week (3 days), and that they could potentially come with me.  Surely they could handle camp with me right there to support them!  I told my friend I'd be happy to come, as long as a few accommodations could be made for us.  I worried this wouldn't be possible, but she gladly agreed to make whatever accommodations we needed!

So off we went to camp.  Squirrel stayed in a cabin with some of the other girls; Munchkin and I had a cabin of our own.  Squirrel had an amazing time!  She made several friends right away, and loved the whole experience.  She had trouble sleeping the first night, but dropped off from sheer exhaustion the second.  Because I was right there, she was able to come to me for hugs and support when she needed to, while still enjoying the freedom of being on her own for the most part.

And Munchkin did amazingly well.  He needed a lot of breaks from the constant activity.  He needed to sit out of a few activities when the heat or noise level got to him, or his anxieties started to build.  He wore his headphones in the main sessions, and sat off by himself for lesson times, and really bonded with one of the adult leaders who allowed him to use her phone to unwind with games when he needed space and time alone.  His smaller-than-average build and social delays may have worked to his advantage in helping the other children to accept him--they all assumed he was much younger than they were, and put up with some of his more "annoying" behaviors because of his "age."

Both of them felt so proud and grown-up being at camp, and can't wait to go next year.

And I am so proud of them.  Squirrel's Cabin Mom told me how mature and confident she is, and was so impressed with her ability to memorize scripture quickly.  I never really told anyone except the Dean that my kids have special needs, but on the last day of camp one of the other leaders asked me about Munchkin's headphones.  I told her he had Autism and explained how the headphones helped him, and she told me he was so well-behaved all week and such a smart, sweet boy!  Of course, I beamed at that.

I'm looking at some of the other dreams I once had for my imagined children now.  Maybe I've set my sights too low for my real-life blessings.  Are there other dreams I've given up on because of their needs?  There's obviously nothing my kids cannot do if they set their minds to it and are given the support they need!  And I will gladly go to camp with them every year if that's what it takes to help them succeed.  Or do anything else I need to do to help them realize their dreams, as well as those I've dreamed for them.

Oh, and also?  Thanks so very much to my dear friend for giving us this opportunity.  I'm sure you had no idea that simply asking me to help you out would in turn help us in such an amazing way.  Thanks for loving and supporting my kids the way you, and all your leaders that week, did!  We are so very grateful to you!

Oh, Torturous Heat!

My dear sensory boy.  I understand that your body does not respond well to temperature changes.  It's why the shower has to be lukewarm, or you feel like it's burning you.  Or why you stay in the pool until your lips are blue, rather than feel the breeze on your wet skin that torments you.  Or why you have to put dry gloves on the second yours get wet in the snow, because your fingers hurt so bad when they're cold that you cry. Or why you seek out the shade wherever we go in the summer and meltdown if you can't find any.

I understand, because I was a lot like you.  Still am in many ways.  When I was a kid, my family would take these hikes together.  I loved them on cool, breezy days.  My parents loved them on crisp, cold days.  I would follow along, grumbling and upsetting everyone around me, and hating every minute of what was supposed to be special family time.  My family also liked to tunnel into the huge snowdrifts and make forts where we could then have snowball wars.  Or make snowmen together.  And since these things were family-time activities, no one was allowed to opt out of them.  My dad was sure I hated being forced to participate in something with the family.  I really just hated the cold.  But I didn't know how to explain to them why I felt so bad.  I didn't understand why I had such a low tolerance to the cold, when I was bundled just as warmly as anyone else, and they didn't mind it at all!  So I suffered through these times, sometimes near tears because I was so miserable, and not understanding what was wrong with me.

No one understood that the temperature actually caused me pain.  And I didn't know how to tell them that the cold made my eyes burn so bad I wanted to keep them shut.  Or that it felt like my lungs were going to burst with every breath of cold air.  While their toes got cold gradually, mine actually started burning with pain within minutes of being outside.  And once I was cold, I never warmed up for the rest of the day.  I'd actually lay in bed after a day out in the snow and shiver under all my blankets, because my body wouldn't adjust back again.

So, baby, I get it.  I understand why you don't want to go outside and play.  For me it was the cold...for you, it's the heat.  You get overheated so quickly.  You hate feeling sweat on your body.  You hate the brightness of the sun, and don't like the way sunglasses feel.  The glare on the pavement and the sidewalk makes you feel disoriented.  You don't like your clothes to stick to you.  You want to enjoy riding your bike and playing at the park, but you just can't get past the discomfort that overwhelms your mind and blocks out all else.

I really do get it.  And I try to make it more bearable for you.  Lots of cold water to drink and play in.  Cold wraps for your neck.  We've tried hats and sunglasses.  Popsicles.  Sprinklers.  Nothing works...unless you're in a pool.  But baby, we can not spend the whole summer at the pool!

Sweet boy, it's summer.  You need to get out and play.
Your body craves the movement and exercise, and your mind is turning to mush with only electronics to amuse you.
You are restless and bored inside--there is so much to do outside!
You want to do something.
I am trying to clean and work from home, and sometimes I just need some time to myself.  I need you to entertain yourself once in awhile.
Your sister gets lonely.  She wants someone to run around and climb trees and ride bikes with her.
You really need to play outside a little bit!

Yeah, I get it.  But I don't like it.

 

Typical Versus, Well, Us

We are a very open family when it comes to sharing our experiences with special needs.  We don't hide the fact that our children have autism and sensory processing disorder and anxiety and depression and adhd.  We are very proud of our children, and these things are a part of who they are.  A large portion of my energy is poured into promoting acceptance and understanding of my children, especially when their unique needs cause them to behave in ways that are not acceptable to the world that doesn't know about about these disorders.

So, many a public excursion involves me explaining to someone that Munchkin can't help that he just (touched you/ bumped into you/ melted down in the middle of the aisle/ took your kid's toy/ issued an ear-piercing scream) because he has autism and is overwhelmed by what's going on around him right now.  And sometimes I receive a very understanding smile, or a verbal acknowledgement that it's ok.  But more often than not, the response is less than desirable.

"Are you sure?  He doesn't LOOK like anything's wrong with him!"

"Seems to me he just needs a little DISCIPLINE."

"Maybe you shouldn't bring him here if he can't handle it."

"My nephew has autism and he can't talk.  Your kid can talk fine--he doesn't have autism."

I will be the first to admit that our autism does not always look like anything remotely autistic-like.  Munchkin is a very normal six-year-old boy in many regards.  But he is also an autistic child in many respects too.  Check it out:

Typical Six-Year-Old Behaviors	Munchkin’s Take On These Behaviors
Licking an ice cream cone to see what it tastes like	Licking windows, cars, doors, people, the cat, and the table to see what they taste like.  Oh, and ice cream too.
Spinning until dizzy, then falling down giggling, just for the fun of it	Spinning for long periods of time without getting dizzy, not because he wants to, but because he feels like he has to.
Ignoring Mom’s request to clean up the first time she asks, then doing it when she gets the stern voice	Not hearing Mom’s request to clean up unless she first makes eye contact and gives you warning that you will be cleaning up soon, and then melting down if she doesn’t allow you to finish what you are doing.  And sometimes melting down even if she does.  And definitely melting down if she has to use a stern voice!
Whining about having to do homework before playing video games	Melting down every single night about having to do homework because it interrupts his desired video games, or even the thought of those desired games.
Occasionally putting shoes on the wrong feet	Purposely putting shoes on the wrong feet because they feel better that way
Learning the rules of the English language in order to read and spell	Struggling to read and spell because the rules of the English language don’t make sense to his literal mind that wants to sound everything out
Sleeping 10 hours at night	Sleeping anywhere from 5-9 hours at night, and only with the help of melatonin
Doesn’t know what stress feels like	Chewing his shirt constantly and obsessing over everything that bothers him in the least
Understanding that his friend is mad at him because he took her toy away from her	Not knowing why his friend yelled at him and tried to snatch her toy back after he took it away, because he only understands his own point of view, not that of another
Begrudgingly giving that toy back to his friend because he understands he was wrong	Having a meltdown over being asked to give the toy back to his friend, because it makes no sense to him that he can’t play with it when he wants to
Knowing that if mom says “In a second” when he asks for a drink, that she will get it for him in the near future	Counting “ONE!” after mom says “In a second” because one second has come and gone without her getting him the drink.
Hugging mom, dad, and sister because they’re family	Hugging strangers in the grocery store and the neighbor down the street because he likes to give hugs
Staying close to mom in a public place because he understands that he could get lost if he doesn’t	Wandering off in a public place because something caught his attention and he doesn’t realize mom won’t know where he is
Doing exercises in gym class	Doing exercises with mom every morning, and with an aide throughout the day, so he can focus at school
Following a daily routine because he’s been doing it that way for years	Following a picture schedule for daily routines that he’s been doing for years because he can’t stay on task without it
Tying his shoes	Wearing Velcro shoes still because we are years away from the motor control necessary to tie them
Occasionally using a word wrong, especially if it’s a new word he’s just learned	Using many words wrong, every day, because his brain jumbles them all together and he sometimes pulls a word that sounds close, but means something entirely different—even very common, everyday-use words
Enjoying going to the movies with the family	Avoiding the movies, because it’s too dark and too loud, and because he’ll talk and wiggle all the way through it and no one will be happy by the time it’s over
Petting the cat gently, or at least knowing to let go when it protests	Not realizing how tightly he is holding the cat, or that it can’t breathe, or that its hissing means “let me go!” and then not knowing why the cat scratched him when he was just showing it some love!
Showing love with hugs, kisses, and words	Showing love with super-tight hugs, a ritual of kisses, and, yes, words!

Yes, he's a typical child with some atypical ways about him.  But he's our Munchkin, and he's perfect in our eyes.  And I will never stop educating those around us about autism, because I want the world to see just how perfect he is!

 

 

 

 

A Letter To My Friends

My dear blog-reading friends,


It's been a long time since I've sat down to write.  That's because I've been so busy living life, and frankly, this winter has been a tough one for me.  Between work and health issues, we've been dealing with some new issues with both kiddos as well.  So time to myself has all but disappeared.  But life is slowing down again now, and I have so much I want to say and do and write!


But first things first...April is here again.  It's my favorite month of the year.  It's the month my baby girl was born (joy!).  It's the end of winter (blah) and the start of spring (yay!).  And it's Autism Awareness Month.


In our real, day-to-day life, we don't always feel a lot of support.  That's not to downplay those who do support us--we love and appreciate our parents and siblings, who are amazing with Munchkin and love him and embrace him for the wonderful child he is.  And we have friends who listen and try to understand what's going on with us, and continue to hang out with us, and love our kids.  We love our friends!  And we have a lot of friends that we've never even met, except on Facebook and in online support pages, who completely understand and support us.  We value them immensely.  


But the people we encounter everyday?  The ones who we see at church and at work and in the community?  Even our doctors and Munchkin's team of therapists and teachers at school?  We don't feel support from them much of the time.  And that's been one of my biggest struggles this winter.  That feeling of fighting for your child to be understood and accepted just as he is.  And this winter, we've had a doctor tell us that he doesn't think Munchkin's on the spectrum, that perhaps he was misdiagnosed.  (This, after just one hour with him...really?)  We've had teachers tell us Munchkin's just "playing us," that his "annoying" behaviors are things he could control if we were a little more disciplined with him.  We've had our OT at his school discontinue his services, because he's "just fine" and doesn't need any more help.  (Which has placed us back on the private therapy waiting lists, because, believe me, he still needs help.)  We've struggled to help him find his place in our church, because he doesn't want to be there anymore.  We've struggled to go to restaurants and stores, which we had figured out, but now cause sensory overloads again.  We've had to find different ways of discipline, of motivation, of calming him, because what worked once does not work now.  Parenting is exhausting work for anyone...but parenting a child with special needs is so much more.  More painful, more exhausting, more trying, more failing, more battles, more goals, more steps to reach those goals, more lessons that need to be learned and relearned and relearned... 


So that's why I love Autism Awareness Month.  Yes, I am committed to raising awareness about the early signs of autism, because I believe that the earlier it is diagnosed, the better the child's chances are of overcoming many of their obstacles.  And yes, I am committed to raising money and participating in research about autism, because there is so much mystery surrounding these children and how their brains work.  And yes, absolutely, I am committed to showing the world that our children are so much more than a diagnosis.  They are so much more than their behaviors, and their quirks, and their silences, and their stares.  They are amazing, brilliant, creative, beautiful children who experience the world so very differently than the rest of us.


But mostly, I love it for very selfish reasons.  April makes me feel less alone.  It lets me know that people all over the world are fighting to help their children fit in; to teach their friends and their communities to accept these awesome kids for who they are, not who society says they should be.  It makes me feel valued and appreciated for my hard work every day.  It gives me a purpose, something besides my kids to pour my energy into.  It allows me to make a difference, to share my story, to show the world my amazing child and to celebrate him.  And it brings some of our struggles, some of our pains, and some of our joys into the homes and lives of people who really don't know what life is like for us.   


But most of all, Autism Awareness Month makes me proud to be a part of the autism community.  None of us ever wanted to be members of this group of people, but we are.  And we are warriors!  We are strong, we are brave, we are mighty.  We band together and support one another.  We share a common voice and common goals.  We love our children just as they are.  We support them in a world that wants to change them.  We speak for them when their own words can't express how they feel or think.  We teach them and give them the tools to succeed in this world.  We know that our children are incredible, that everyone of them is valuable.  And we are proud, so very proud, to be the parents of a child with autism.


So check back throughout the month.  I have so much I want to say about Munchkin, about autism. I have this huge desire to show you all just how amazing my little guy is!  I hope you don't mind if I brag on him just a little bit now and then.  Love to all of you,


Ellie

Things I Have Said Today

1. It's not morning yet.  Go back to bed. 
2. Did you change your underwear?  We change our underwear every morning.
3. Hands out of your pants.
4. We don't hurt the cat.
5. Quiet voice.  No yelling.
6. Don't lick the window.
7. Get off the couch like that.
8. He's making a hurt noise.  Let him go.
9. Yelling hurts my ears.  Quiet voice.
10. You're right.  I'm trying to ruin your life.
11. Do you have to pee?  Then don't grab that.
12. Stop licking the mirror.
13. Keep your spit in your mouth.
14. Did you remember to wipe?  Go fix that.
15. Stop torturing the cat.
16. Jump on the trampoline, not my couch.
17. I know, I am the meanest mom ever.  Now do your homework.
18. Let go of your sister.  You're choking her.
19. Stop kicking your brother.
20. I'm gonna lock you both in your rooms if you don't stop it now.
21. Don't wipe your nose on me, use a kleenex!
22. Plates aren't garbage.  Take it out of the garbage please.
23. Eww!  Did you just lick me?
24. Get off of her!
25. Do your homework.  
26. Clean your room.  No, it's not my room, I won't clean it for you.
27. I don't care if you like it messy.
28. Because I said so.
29. I didn't ask you what you want to do.
30. Is it bedtime yet?

Black Holes and Gravitational Pulls

The universe is trying to tell me something.  Or, at least the blogger universe is.  I follow a handful of blogs written by fellow autism/ special needs mommies.  Oh, and one written by a daddy.  In the past few days, most of them have had posts relating to one topic.  Call it coincidence.  I think it's bigger than that.  I think it's God telling me I'm not alone.  So I add my own blog post to this common thread circulating around the blogger community, in the hope that someone else, perhaps even you, will read it and know that you're not alone either.

I'm not a big fan of the whole "New Year's Resolution" idea.  I usually skip them--I mean, what's the point in proclaiming something that is only going to result in a guilt-induced overindulgence of that something when you mess up and do (or don't do) that thing you swore you would (or wouldn't) do this year?  Yeah, so I skip the guilt and just don't even resolve to do anything new or different or better in the new year.

But this year, I felt compelled to make a "resolution," if you will.  Not out loud, mind you.  Just in my head.  Well, and to my husband, who looked at me a little funny and reminded me that I don't do resolutions.  But I made one:

This is the year I place my own needs at least as high

 on the triage charts as the needs of the rest of my family.

What does this mean, you ask?  Well, obviously, I want to eat better and get more sleep and try to exercise.  I want to get haircuts when I need them, and buy new makeup and clothes that are actually stylish and fit me right.  I want to replace my threadbare undergarments, because we all know that moms stop buying themselves underwear when they start buying it for their kids.

But I took the biggest and most important step towards the higher-valued me today.  I went to my doctor.  I told her in stumbling, shaky words how everything just feels so big and stressful and out of control right now.  How this veil has been pulled over my days, making everything seem just a little blurry and out of focus, tripping me up as I stumble through the days and nights of autism, anxiety, unemployment, multiple jobs, health concerns, education concerns, IEPs, diets, seizures, and ADHD.  How I am annoyed and angry more often than I am sad, but when the sadness hits, I just want to give in to it and allow myself a total breakdown.  Which makes me more angry.  How I am taking it out on my kids--how I can't stay calm when Munchkin relies on my calmness to keep him from flying off the handle.  How I can't keep Squirrel organized because my own thoughts are a jumbled mess.  How I can't muster the energy to play with them or draw with them or listen to them talk, and how they know I'm not really all there even when I try.  How my husband doesn't know what to say or do, but knows enough to support me when I say I think I'm depressed again.  How I can't fall asleep at night, and when I finally do, I can't stay asleep.  And how I'm SO TIRED during the day.  How I'm not eating much, and what I do eat is not healthy.  How I don't want to leave the house, but the thought of just staying here all day surrounded by this cloud of heaviness makes me even more anxious.  How I think I'm just really stressed, but it's about to cross the line into a serious depression, and I think I need to go back on antidepressants before we get all the way across that line.

I poured all this out, then I took a deep breath and looked up at her hopefully.  And after asking some questions and clarifying a few things, she agreed that I have more than the average amount of "stuff" on my plate and I am certainly a little depressed and a carrying way too much stress.  So I left there with a prescription and a referral to a counselor to talk about how to deal with this stress, since none of it will go away anytime soon.

And tonight I feel a little bit hopeful.  And grateful to all those honest moms and dads out there who are willing to share their stories and expose themselves to help another.  Who aren't afraid to say when they need help, whether it comes in someone to talk to, or a little blue pill, or any other form.  Thank you for being brave enough to write what you're experiencing, and for pushing me to realize where I'm headed before it gets too bad.  

If you've never dealt with depression, you can't understand the way it grabs your mind and takes over.  It taints the way you experience things, the way you understand things, the way you feel things.  At first, it tells you that you're strong enough to deal with anything, that you don't need any help, that you can pull yourself up if you just try harder.  And all the while, it's slowly pulling you into its gravitational field.  And at the center of that field is a big black hole that will destroy you.  

I've dealt with anxiety and depression since I was a teenager.  This isn't new to me, but sometimes I try to be too independent.  Depression is too strong a beast to be fought alone.  You'll get caught in its gravitational pull and start spiraling towards the center of the black hole.  Do you know what happens to stars in outer space when they get too close to a black hole?  They explode.  They go out in a glorious display of color and light, but then they cease to exist.  I've been really close to that black hole before.  Close enough to think about hurting myself, hurting my children.  Close enough to break down sobbing on the side of the interstate, afraid of the demons in my head telling me how much easier it would be if I just made it all stop.  Because that's what Depression does--at first it tells you that you're fine, but after awhile it changes its tune, and starts to tell you how hopeless and futile life is.  Those were some really dark days, when I was staring right into the vortex of that black hole, waiting for it to suck me in and make me explode.  I never, ever want to go back there.  I want to grab all the help I can get until that veil covering my life right now starts to lift and I can cope with all the things life has handed me again.

And if you feel any of these things, please talk to someone.  Your doctor's a good person to start with.  Depression takes many forms.  For some people, it's crying jags and melancholy that won't lift.  For me, it's anger and annoyance with every little thing, interspersed with an utter indifference to life.  It's body aches and headaches (I actually wondered if I was fighting a flu bug for a few days!)  It's insomnia and fatigue.  And don't be ashamed because you aren't actually Supermomma.  No one else is either.  We deal with a lot just  trying to balance spouses and children, doctors and therapists, schools and daycares, concerns for this day and for the ones to come.  Even the super mommas need someone to keep them from spinning out of control sometimes!

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