"When Does the Joy Come?" (Life Through Noah's Eyes, Part I)

This morning, I didn't know whether to laugh or cry.  Noah was having a meltdown because he couldn't reach the cereal.  We're working on his problem solving skills, so even though the easiest thing to do would have been to reach for it myself, or tell him how to get the box down, I couldn't.   I had to wait for Noah to figure it out on his own, even if it meant he starved until lunch.  He is perfectly capable, there was no reason other than stubbornness for the meltdown.  Avery bit Noah during his own temper tantrum. Oh good, it appears he has all of his teeth now.  Time out for Avery, ice for Noah.  Breakfast was burning, my morning dose of caffeine wasn't loading fast enough, I was wondering why I got up in the first place, and things were going haywire rather quickly.  While I contemplated either banging my head against the wall or smashing it in a cupboard, I glanced up and saw the sign someone had given me at Avery's baby shower.

"May Peace and Love Fill This Home."

I was sure there as a blog post in that moment, I really was.  Instead of banging my head against the wall, I hid in the shower until Shawn had sorted most of the problems out.  Yay me!  Anyway,  I never did 'find' my blog post in our morning fiasco and my teaching moment came much later in the day, courtesy of Noah, minus the meltdown.  

Listening to the radio while getting lunch ready, the song "Before the Morning" by Josh Wilson came on.  Noah looked at me, as he does sometimes will all the weight of the world on his shoulders, and asked, "Mom, when DOES the joy come?"  Thinking we might finally be talking about why he has AS and other kids don't (he has yet to ask), I asked him what he meant.  My son always surprises me.  Instead of what I was expecting, he said, "Why is there so much hurt in the world?  I mean, why do we have to have war?  Why do bad things have to happen?  Why do there have to be bad people?"  Now the weight of the world was on MY shoulders.  I said, "Well Noah, I don't know the answers to those questions.  What I DO know is that for us, the joy comes in our Lord.  The joy comes every morning when we wake up, take that first deep breath and get to put our feet on the floor.  The joy comes in the first morning hug and the first morning smile.  The joy comes in knowing that what is important to us aren't things, but the people we love and can count on."  Thankfully, he seemed satisfied with those answers.

And now, I remember why I got up in the first place this morning:  Because even though I really wanted to bang my head against a wall, they really do bring me joy.  They are the reason I take that first deep breath and the reason my feet hit the floor.

Psalm 30:5:  "For his anger lasts only a moment, but his favor lasts a lifetime; weeping may remain for a night, but rejoicing comes in the morning."  (NIV)

Dear Friends, May peace and love fill all of your homes, today and always.  May you always find the joy in the morning.

Why I Have Gray Hairs at 34

This is Avery, my little monster, cleverly disguised as a 22 month old.  My miracle, my pride and joy, my child who isn't supposed to be.  He's also the reason I doubt my parenting abilities more than ever, and I'm quite certain, the reason for most of, if not all of, my gray hairs.  He is stubborn, strong-willed, independent and opinionated (gee, I wonder where he gets THAT from...).  I love him dearly and wouldn't trade him for anything or anyone.  I am so grateful to have him in our lives.  Along with the challenges, he brings me great joy and a lot of laughter.

Raising Avery has been different than raising Noah from the very beginning.  Where Noah was colicky and "difficult" as an infant (that sounds horrible, doesn't it?  I'm certain it had to do with the parents as much as with the child), Avery has always been happy-go-lucky and smiley.  Avery has always just gone with the flow and has easily entertained himself.  As a parent, the differences between my boys are very interesting.  When Noah was younger, time out was the ultimate discipline tool.  Noah would tell me when he was even thinking of doing something wrong, then ask if he should go sit in time out.  With Avery, it quickly became apparent that time out was not going to work (even though we still try it).  Time out became a game to him.  He would purposely do something naughty, then go sit in the time out chair.  No, I'm not kidding.  The first time I spanked him, he literally turned the other (butt) cheek to me as if to say, "Yeah, so?  Your point is---?"  Again, I'm not kidding.

During one temper tantrum, out of all the books in our bookcase that Avery could have chosen, he threw Dr. James Dobson's "The Strong Willed Child" at us.  Yes, we've read it cover-to-cover and even highlighted a few portions of it.  We're pretty certain that even though it was written many years ago, it was written specifically about Avery.  Do you think it's possible Dr. Dobson can see into the future?

The other night, while Avery played with his little workshop table, he put his little stuffed bear under the battery  operated drill press and drilled his bear.  "Avery!  NO!  That's mean!  We don't drill our bears!  That hurts him!  You need to hug him and tell him you're sorry," I told him.  He picked up his little bear, hugged him close and said, "I sowwy bwear, I wuv you."  As I walked out of his room, satisfied that my job was done, Avery laughed mischievously, jammed his bear back under the drill press and proceeded to drill his bear again.  I emailed my mom that night and asked her how I'm going to raise this one.  Her response?  Very carefully, and with one eye open at all times.

I love watching Avery's personality develop.  Avery loves the nursery at church, preferring one of the caretakers in particular over all the others (No offense to the rest! They are all wonderful and I think it's terrific that we even have some dads in there!).  He knows he "belongs" in the nursery, taking our hands and walking us back to the nursery whenever we go to church, even if it's not a Sunday.  He loves his daycare playtime away from Mommy when I go to work on Thursdays and he loves his playgroups.  He loves to sing into the microphone at home; his favorite tv shows are Blues Clues and Fresh Beat Band.  He loves anything to do with music and dancing and is frequently caught trying to carry the kitties around the house (usually when I hear the kitties crying for help!).  I love the way he carries his blankie and his llama with him everywhere he goes, how he sleeps with his butt in the air, how he yells, "AMEN!" at the end of his prayers and grace, the way he reaches up for my hand when we walk together, instinctively knowing Mommy is right there.  I love the way he bats his little baby blues when he knows he's done something naughty, how he announces, "Ta-DA!" to everything he does, how he puts his little finger to his nose and says, "I'm cute!"  I love his sloppy little kisses and his great big hugs.  He's also a great after-nap snuggler.

I have watched this little boy like a hawk from the moment that first test told me I was pregnant (word from the wise: if you live in a small town and haven't told your friends you have been trying to get pregnant, don't go to the small town drugstore for the tests.  Make the drive to the next STATE for them.  I didn't make the drive and ran into most of my friends in the store.  Those I didn't run into were on my answering machine when I got home, eagerly awaiting the results.  And don't try hiding the tests behind your back; that doesn't work, either!  I should have saved myself the trouble and taken out a newspaper ad.).  Between my issues and Noah's differences, I have taken stock of Avery's development every step of the way.  We had a few scary moments during my pregnancy, then he decided to arrive a little earlier than scheduled after a very frightening and difficult delivery, during which our doctor, the nurses, Shawn and I were afraid we were going to lose him, and finally, he was readmitted to the hospital as a newborn for jaundice.  We overcame a low APGAR and some breastfeeding struggles so quickly that people (i. e., complete strangers) began to wonder what I was feeding my baby.  I literally have a checklist in my head, "Okay, he's doing that and Noah didn't.  Noah did that and Avery isn't."  I know it isn't fair to compare children, but as a mother of a child with special needs, I frequently find myself doing so.  So far, I see many differences between him and Noah, so ASD is the last thing that concerns me, but I do worry about sensory issues because of what I know about them (knowledge is power, but sometimes too much knowledge can be a bad thing).  Avery is an INTENSE child.  I call him my little thrill seeker, my "faster-higher-scarier-zigzaggier" child.  I tell myself these are only observations, to file them away.  He's just a toddler exploring his world, I tell myself.  I don't want to second-guess myself a second time, but I also don't want to pin unnecessary worries on a child if there is no reason for them.

As I watched him playing outside with the three older boys (mine and my friend's) the other night, clad only in a t shirt, diaper, his dress shoes and his plaid golf hat (he dressed himself, can you tell?!), I realized just how different life would be without him, and not in a good way.  A piece of my heart would be missing. We are so blessed by this sweet little terror, even if my entire head is gray by 35.

      

I've Learned a Few Lessons This Week....

It's been a rough week....  

The past few days in particular have been difficult.  I set this week aside to deal with medical insurance issues (Angry Mommy--that would be me--is still trying to get our company to cover speech pragmatics for Noah), make follow up appointments for Noah (something I have been trying to do since February, but have been unsuccessful in doing, due to the system(s) I have to deal with) and accomplish various other tasks.  So far, I have been unsuccessful in accomplishing any of these, although not for my lack of trying.  Along the way, I've learned a few lessons.

First, for whatever reason, our insurance company is closed this week.  I have yet to figure out why, because this is a HUGE, nationwide company.  I find it difficult to believe they would close for Easter week.  Of course, I didn't find this out until I had jumped through their many phone-related hoops, though.  I received yet another phone recording telling me their office was closed and to try again during normal business hours, 8am-8pm, my local time.  It was 10am when I made the phone call.  I have yet to figure out the lesson learned here, other than they will have to deal with Angrier Mommy come Monday.

Noah was diagnosed in January and we were told to make a follow up for June ("Congratulations, your son has Asperger's Syndrome, we'll see you in 6 months.").  I have been trying to do that since the end of January; as of three weeks ago, I was told the doctor hadn't turned in her June schedule and I would have to keep calling back.  At that point, I asked if we could just schedule for May because I was getting tired of this little game:  "I'm sorry ma'am, but she's booked for May."  When I called back this week, I was told she was booked through June and I would have to schedule for July.  I lost it at that point because this was just unacceptable.  It's unfair to Noah and he deserves better.  I explained in no uncertain terms that my son is already a patient of this doctor's, that this was simply unacceptable, and I would be calling back every single day until they figured out how to fit him into her May or June schedule.  The scheduling person offered to have the doctor's nurse call me back; I said that would be great, as I've been trying to get in touch with her for several weeks now, also.  That night, I emailed the doctor my frustrations: how I have tried several times to get in touch with her nurse and the run-around I have been given in trying to schedule a follow up appointment for my son.  I had an almost immediate response the next day.  I was surprised to find out that her June calendar has been up since January, and even better, she's going to have her nurse call us next week to fit us in the first week of May.  Lesson learned:  When all else fails, forgo patience, give in to frustration and go straight to the source.  Of course, now I have to hope the nurse actually calls back.  I'm so tired of wait lists, closed wait lists, hearing that our insurance isn't accepted, and so on.  It's enough to make me cry most of the time.  I'm only trying to get help for my son.


I also learned a valuable lesson in being specific with a child with AS.   You'd think I'd know this by now.  Shawn actually remembered to pack his lunch the other day, but then forgot it on his desk here at home.  He called me to double check, then said he was turning around to come back for it.  I should have asked him how far away he was.  I handed it to Noah and told him to run out to meet his dad with it.  I should have been more specific:  Wait at the stop sign for Daddy and don't go any further.  We live at the end of a cul-de-sac a little far back in our neighborhood, there is a busy street at the end of our neighborhood, then a major 2-lane highway at the end of the that busy street.  I soon got a panicked phone call from Shawn:  "DO YOU KNOW WHERE OUR SON IS?????"  "Yes, he's at the end of the court at the stop sign, waiting for you, right?"  "NO!!!  He's almost to 28!"  WHAT????  Our son had made it almost to the major 2-lane highway.  In his pajamas.   I had told my son to run and he did just that.  Just like Forrest Gump, he started running and kept running.  My poor child.  When he got back home, I just hugged him and we went over what Mommy should have said.  I didn't even bother asking him my usual, requisite question: "What were you thinking?!"   I know what he was thinking:  "Get Dad's lunch to him."  I'm just lucky he didn't make the 45 mile trek into Shawn's office on foot.  This time, I was the one who wasn't thinking.   Lesson learned:  Be specific, VERY specific, in my instructions to Noah.


I don't know if there's a lesson in this one.  It was more of one of those "Dear Lord, how am I going to get through raising this child?" moments (the grace of God and good pharmaceuticals for both of us?!  Kidding, just kidding....).  Noah was literally running laps around the checkout stand at the grocery store (I normally have a better handle on things, but it was turning into one of those days) and begging for a Mello Yello (WHEN HAVE I EVER LET HIM HAVE SODA????).  The woman in front of me was actually taking pity on me, instead of giving me that "Control your child, lady" look that I usually get.  Maybe it was the look on my own face, I don't know.  Whatever it was, God bless her for not judging us.  I yanked Noah to me by his shirt collar (desperate times call for desperate measures) and explained that I did not need him towing my car home and therefore there would NOT be any soda (I also latched his hands onto the cart and told him not to move).  The woman in front of me burst into laughter, then immediately apologized to me, saying it was the funniest thing she'd heard all morning and she couldn't believe how matter-of-fact I was about it.  I explained to her that if I allowed my son to have this soda, he would be able to tow my car home, then return and do the same for her (a la the old Mike Myers/Nicole Kidman SNL jungle gym/playground skit).  *I think Shawn and I are finally seeing eye-to-eye on the medication issue.  Or maybe I'm just wearing him down.  I think he is understanding that if we don't do something soon, we'll be medicating me, in a padded cell where I can wear one of those nifty self-hugging jackets.  And he'd be raising our lovable little hellions on his own.  I don't want a zombie or a child I can control, I just want a child who can function in society.


I've also learned just how much I can love someone else's child.  Avery is in love my friend's oldest son (13 years old) and now, her son has also taken on looking after Noah.  At least he did the other night.  We're in a delicate situation with several of our neighbors.  They are one of the reasons we moved Noah to private school.  As much trouble as we've had, for whatever reason, Noah still wants to be accepted by these kids.  To avoid engaging in gossip, I won't say anything more than that.  My friend was over with her children Monday night and all the neighborhood children were out in the court playing.  In spite of our instructions to play in the backyard, we looked out the front windows to see Noah and his friends in the front yard, inching closer and closer to the court and the basketball hoop where all the neighborhood kids were gathered.  My friend gave the signal that it was okay for her kids to go and my heart ached.  Noah wanted so badly to join them, but experience told me it would not be good.  I watched Noah climb the tree in our front yard and my heart shattered.  I called him inside, talked with him and then gave him permission to join the other kids.  Shawn, my friend and I staked out the driveway to watch.  My friend grabbed her son to say something to him, but before she could, he said, "Mom, don't worry, I got this."  From then on, he cheered my son, watched over him, made sure he got plenty of time with the ball and just looked after him.  It made my heart sing and I wanted to hug him. Later that night, I thanked him for being so good to my boys.  He told me that it's okay, it's nothing.  But it isn't "nothing," it's everything to this mommy.  And to my son, it wasn't just a tidbit of normal, it was a gigantic moment of normal.


Last but not least, I learned that not everyone is educated about the Autism Awareness ribbon.  A woman noticed my pin on my blouse and asked if I'm a survivor.  In typical Amy fashion, my mouth worked before my brain and I jokingly replied, "Yes, I survive it everyday, I suppose!"  She gave me a puzzled look and said, "I'm sorry to hear that.  I hope you recover quickly and easily."  It was my turn to give her a puzzled look.  It took me a few more seconds to realize that most people equate the awareness ribbons with cancer.  Neither one of us were on the same page and this was my moment to educate her.  I quickly let her know that the multi-colored puzzle piece ribbon is the symbol for Autism Awareness and my son has been diagnosed with Asperger's Syndrome, a high-functioning form of Autism.  "Ooohhhh."  Yes, I survive it everyday.....  In left field....


*As I was typing this, God stepped in to make my week a little brighter.  A phone call I have been waiting on for over three months (and hassling the respective clinic about on a weekly basis) called to double check all of our information and to let me know that I will soon be receiving another phone call from a new caseworker for Noah.  How soon "soon" is, she couldn't tell me, but this means we've been bumped up on the waiting list and Noah will soon be receiving the rest of the testing (educational, social/emotional, cognitive, etc)  that was started back in February.  These tests will give us more insight into the AS diagnosis, possibly confirm an ADD/ADHD link (which he has not yet been diagnosed with and which I question), tell us if Noah could have any other learning disabilities and give us suggestions on how to handle all of this in his best interest.  Finally, things are beginning to fall into place there!  I also received a second phone call from the nurse, giving us an appointment for the first week of May with the diagnosing physician.  Praise God!  Now, if I could just channel with someone from our insurance company and have them call me to approve speech therapy......

The People in My Head

Yes, I have people in my head (don't tell the men in white coats, okay?).  I have frequent conversations with them.  I tell myself it is more like me having a conversation with myself, making decisions and forgetting to let the rest of the world in on them.  Yes, we'll go with that.  Unfortunately, it is a hazard of the combination of my medications, illnesses and MOTHERHOOD.  The losing of my mind, that is.   It annoys my husband because I tell my 'head people' things, but forget to let him and the kids in on our decisions.  He tells me I'm doing this more and more often.  Sometimes it can be a little scary.

This morning, for example, he was drinking the orange juice I had reserved for Easter Sunday breakfast.  I gave him my Wife Look and said, "That's for Sunday morning."  Frustrated, he announced, "You had another one of those conversations, didn't you?!  Could you let the rest of us in on it when you and your people make these decisions, please?!"  Yes, dear.

Unfortunately, this won't be the last time it happens.  And unfortunately, it will probably get worse and it will probably not get better!  Fortunately, I do have a great husband who helps me keep my sense of humor in all of this.  And fortunately, I have an understanding husband who is not keeping count of all the times I talk to the people in my head and lose my mind!  Right, dear?

Surviving, Thriving and LIVING

As a person with chronic illness, I find word phrasing to be an important part of my life.  Some people call me nit-picky, but I really do believe that our wording can have a negative or positive impact on our attitudes, and in turn, on our health.  When I hear someone say, "I suffer from _____," I ask them to try rephrasing their statement to "I live with _____" or "I have _____."  To me, the wording can make all the difference between allowing my illnesses to conquer me, or me conquering my illnesses.  Much like the old Tylenol commercial:  "I have arthritis, but arthritis doesn't have me!"  I have experienced a partial physical healing, but for me, my true healing came when I accepted what was happening inside my body.  I decided to start LIVING rather than, well, dying.  Celebrating life and what I've been given is a much better way to live.  I suppose, in a way, it's my own mission statement.  This is the example I want my children to see me setting for them.

I was reminded of my mission statement twice today in less than five minutes in the grocery store parking lot.  As I pushed my own weary body, kids and overflowing grocery cart uphill through the parking lot, I passed one license plate with the pink breast cancer ribbon that was personalized to announce that not only was the driver a survivor, but pregnant!  As I was marveling over the blessings in that family's life (and yes, smiling through my happy tears for someone I don't even know), another car passed with a wheel cover announcing that the driver is a Lupus survivor.  I did feel compelled to leave a congratulatory note on the first car (from one mommy and survivor of another kind to another), but I couldn't quite muster up the courage to knock on the window of the other car and thank that driver for sharing my viewpoint (the word stalker comes to mind...)!

So, here I am, surviving, thriving and LIVING...  In left field, of course!

My Apologies to Toyota

Let me begin by saying that in today's economy, I am grateful our family can have two cars.  Let me also say that some days, I fail in my Christian walk. . .   And yes, today was one of those days.


My husband drives a Prius.  Several years ago, he gave up his big, manly truck.  I'm pretty sure he cried when he swapped the keys for his truck with the keys for the Prius.  He was making a sacrifice for our family and doing the 'right' thing.  Shawn takes a lot of teasing for driving such a small, unmanly golfcart, but he tries to be a good sport about it.  To make matters worse for my dear husband, it also happens to be a "sparkly blue Prius," a la Jeff Dunham.  I drive a Jeep.  A top-down, 4 door, 4WD, standard-shift, fun-to-drive, 2 car-seats-in-the-back, Jeep Wrangler.  We bought it right before we conceived Avery, having traded in my mini van.  I came home in tears one day, telling Shawn there was no point in having a mini van if we weren't going to fill it.  Three months after buying the Jeep, we were finally pregnant again.  God is funny that way!  :)


I had to drive Shawn's car into "the city" today.  Remember, I'm a small-town girl, so anything out of my comfort zone is "the city."  Am I grateful we have two cars?   Yes.  Do I like driving Shawn's car?  ABSOLUTELY NOT, especially in rush-hour traffic with all the crazy people.  I like the safety of my tank.  I feel very claustrophobic in Shawn's car.  I also feel very small.  I tend to forget that I don't need the key to start it, that I don't have to shift (I keep a water bottle in the cup holder for this purpose, which makes people laugh; I have yet to figure out what to do with my left foot for the clutch, though!) and that it has all of these supposed "smart" features.  I think what Toyota forgot in the smart-feature process though, is the operator of the vehicle.  In this case, that would be ME.  


The Prius has this nifty little thing called a Smart Key.  It does not have a Smart Driver.  Just by standing next to the car with the key on your person and pulling on the door handle, it is supposed to unlock.  Well today, it didn't.  I argued with the car for about ten minutes.  I double and triple checked my purse to make sure the Smart Key was in there. Then I took to waving the Smart Key in front of the door handle while pulling on the door handle.  I tried jumping up and down with the Smart Key in my hand while pulling on the door handle.   I kicked the tires.  I called it names.   I called the Toyota manufacturers names and I think I might have said something about their mothers, also.  This was not one of my finer moments and I was so glad my children were not with me. I yelled, I argued, I pleaded, I begged with it to Please.  Just.  Unlock.  Then I looked in the windows.   Noah's booster seat wasn't in the back.  No library books on the floor.  I walked around to the back:  No Camp PMI sticker on the back window, either.  I had been arguing with someone else's car.  


Now, that's not a mess you can just nonchalantly walk away from....

--OOPS--

When Noah Speaks Wisdom

Noah forced HIS hand today.  In the process, he spoke volumes of  10 year old wisdom into my life.

For the past two years, the ministry center I volunteer with has partnered with two local hospice chapters to facilitate a family grief day camp.  This is a one-day event for children and their parents/guardians who have lost a loved one.  It is a spectacular day, full of all kinds of wonderful things (I won't lie to you--some of the kids don't want to be there when they arrive in the morning, but we see some great changes throughout the day) and terrific people.  I have gone to help out with the children and some of the behind-the-scenes organization.  It's one of the things I love the most about our center.  When the date was announced for this year's camp, I signed up again with hesitation: as a volunteer.


A child's diagnosis of AS can make a parent really kind of dumb sometimes.  When my grandfather died, I didn't think clearly.  Because of Avery's age and Noah's AS, I have made most of the grieving about me.  I have forgotten that my children have also suffered a deep loss.  The day Denny died, Noah looked at me and asked, "What will Avery and I do now?"  My heart cried in anguish and even though I already knew it, I asked him to tell me what he meant.  He went on to explain, "Now that Denny is gone, Avery and I don't have a grandfather."  My son is correct.  My father and Shawn's father are not in the picture and even if they were, they are not good influences for our children.  Sadly, we have had to actively make the choice that even if our fathers wanted to be involved, they would not be allowed.  My paternal grandfather has never met my children and even though we keep in touch, he does not play an active role in our lives.  My sons have suffered as much loss as I have.  However, thinking with an AS brain, it didn't really occur to me that Noah was feeling much loss.  He didn't cry when we told him Denny died.  In fact, he had asked what was for breakfast after declaring that Denny had been healed by the hand of God and was in a better place!

Today was quite possibly the biggest blow I've been dealt in this grief process.  While at work, my son brought the Family Grief Camp application to me and said he wanted to sign up.  Thinking he meant he wanted to volunteer, I told him we'd have to talk to Miss Sue, our volunteer coordinator.  Noah looked at me with a look I seldom see on his face and said, "No Mom.  I really miss Denny.  We need to go to this."  It was a tidbit of normal that I didn't really want (usually they make me smile).  I held onto him for a few minutes while we both cried and let it all out.


So, this year, if you see me at camp, I am stepping out of my shoes as a volunteer and into a different role:  The one of the mom of a grieving child who has lost his great-grandfather.


*Just in case you are wondering about the rest of the conversation I had with Noah pertaining to grandfathers, we are praying for "a Denny" for him and Avery.  I reminded him that Denny was a gift to me, not my original grandfather.  He was given to me after my grandfather died and has been my grandfather ever since.  So, if anyone knows of a gentleman looking to adopt two very special grandsons, let him know where he can interview and fill out the application!  :)*

How Do You Spell A-M-A-Z-I-N-G?

That might sound like a dumb question.  You're thinking, "Well, Amy's spellcheck must be broken.  Time for her to buy the newest edition of Webster's."  Or maybe you're thinking I really shouldn't be homeschooling my children if I can't spell such simple words!

--THINK DEEPER--

Lately, I've been spelling AMAZING, G-O-D-'S - G-R-A-C-E.  I see His amazing grace everywhere.  When my single mom friends balance their checkbooks down to the last penny and one child needs lunch money that another child manages to pull out of the couch cushions, I see His grace.  When another single mom friend had a bill she didn't know how she was going to pay and found random money in the bottom of her purse--almost to the amount she needed--I see His grace (yes, I call that God, not luck).  When we were told that between the illnesses and meds, there wouldn't be anymore babies, then we were heard that sweet word,  REMISSION, then that even sweeter cry of a newborn baby who wasn't supposed to be and as I watch Avery plow through life ("HULK SMASH!"), I see His grace.  When my feet hit the floor in the morning without the help of my husband, I see His grace.   When I see the look of sheer delight on Noah's face while he sits on top of Molly, conquering AS one day at a time, I see his grace.  When I go to bed at night knowing all is right with my world, I see His grace.  

Easter is upon us and it gets me thinking about everything Jesus went through for me and how often I take it for granted.  It gets me thinking about how much I take God's grace for granted.  I am ashamed and embarrassed by my behavior.  There is a song out right now and one of the lyrics just really slammed me: "I am the nails in your wrist, yet you love me anyway."  WOW.  Of all the blessings and gifts I have been given, above all else, I was given LIFE, and not just any old life, but ETERNAL LIFE.  Not only was I given it, I accepted it and pledged to live a life that shows it.  As the saying goes, time the buck up, babe.  

I'm sure at times I sound like a broken record, but most of you don't know me from when I was really, down and dirty sick.  I lost a LOT and I came close to losing even more.  And when I look at what I've gained in its place, I can't help but be
AWE-stuck.  AH-mazed.  AWE-mazed.  

So, tell me:  How do you spell A-M-A-Z-I-N-G?

We Pass This Way But Once

*Disclaimer: I don't normally feel the need to share these kinds of stories, but I've been laughing about it ever since Friday and everyone else I've told has been laughing about it, so for whatever reason, I am sharing a fart story.  Please forgive me!*

I love our pediatrician.  She completely gets my off-the-wall sense of humor and has always taken my maternal neuroses with a grain of salt.   She is also a practicing Christian, which has become more and more important to me over the last several years. We get along well.

I had to take Avery in last week for a double ear infection.  He had been running a fever on and off throughout the week, so he hadn't been eating, which also meant there hadn't been any action in his diaper, if you catch my drift.  As his doctor and I were sitting knee to knee while she examined him, Avery sitting on my lap, my son proceeded to let out the longest and loudest gaseous explosion I have heard in my life.  He batted his little baby blues the way he does when he's doing something he knows  he shouldn't be doing.  All we could do was wait it out.  His doctor rolled her stool back a little bit (she is not phased by anything), raised her eyebrows and said, "Are you finished yet?"  I really expected him to put his finger up in a "hold on a minute" motion at this point.  Avery finally heaved a huge sigh (including his shoulders) and said, "Niiiice."  Gee, I don't know where he learned THAT from.

Our pediatrician burst into laughter, tears rolling down her face and apologized to me, saying, "I'm sorry, I can't help it!  It's been a long day and this was just too much!"  Our pediatrician's long day was 11:30 in the morning.  She was laughing so hard she could barely finish Avery's examination.  I could still hear her giggling when she left our room and telling the nurses the story as we left.   For once, I was glad for gross bodily functions.

I admit it, I am completely powerless
against this little face!

This Week vs. Last Week: Perspectives

I have to say, when it comes to husbands, I'm very blessed.  BEYOND blessed.  Recognizing how badly last week went for me, Shawn was quick to help me out this week.  God bless the dear man, he did his best to make sure I got plenty of Me Time.  He's probably afraid of having to permanently admit me to a hospital and raise our lovable little hellions on his own.  :)  I have to laugh when I hear my grandmother's recent words echoing in my head.  She was commenting on how good Shawn is as a dad and a husband, how quick he is with his 'duties' and how much he loves his family.  We were talking about how they just don't make daddies and husbands like they used to (thank you, God!).  Then she said, "I just don't know how you got so lucky!" I love my grandmother dearly and I had to laugh at her word choice and voice intonation.  I know that wasn't how she meant it, but lately, I have been thinking to myself--how on earth did I get so lucky???  Like most couples, we have our moments, but it's seldom us against each other, it's almost always us against the rest of the world (and on some nights, us against the children!).

We've been short-staffed this week at the ministry center I volunteer with, so when I was offered some work to do on Shawn's WFH day, he helped me jump at the chance, keeping the boys home with him and teasing me to not spin gravel in the driveway on my way out.  I always do better when I have a chance to think outside of myself.  Avery has been running fevers on and off this week (double ear infections, hell-o, Mommy!), one of the days on my usual Thursday volunteer day.  While I showered, contemplating either trying to get a sick toddler past the daycare teachers (wrong, wrong, WRONG!) or taking Avery with me long enough to throw the food on the counter and the quiche in the oven for someone else to take out, Shawn came in to tell me he'd called in sick to stay home with Avery.  He'd decided my non-paying, volunteer job was more important that morning.   Shawn also made sure I made it to Ladies, Legs and Lattes this morning:  girl time with my two good friends for pedicures and coffee, which I am seldom able to do.   Earlier in the week, he asked if it would be easier for me if he started taking Noah to his horseback riding lessons, but I said that I don't mind.  It took me a few hours, replaying the conversation a few times, to realize it was his way of telling me he wanted to do it.  I realized he needs to see his son doing something happy and successful. So, we're going to do it the way we do everything else:  As a family.  How can I not love him?!

I was also able to sit down and talk with one of my good friends and fellow staffers at our ministry center about the GriefShare class we offer.  I fully recognize that I am grieving the loss of my grandfather.  It's difficult; some days are better than others.  What I haven't been able to recognize is that I need to take this class.  I've taken it before, so I've been telling myself that I don't need it because I already know everything (and I wonder where Noah gets it from).  Well, sometimes we all need a refresher course.  So, I'm at the "talking about taking the class" stage.  Trying to figure out how to fit it in with doctors appointments, OT, playgroups and everything else.  Trying to figure out what to do with my lovable little hellions.  Yes, I am fully aware of the phrase, "where there's a will, there's a way."   Let me talk about taking it for a few more weeks.  This is me working up to it to doing more than talking about it.

My appointment with my neurologist was a little frustrating.  He wanted to increase the prednisone (for those of you have never been on it, it's a great little wonder drug, but the side effects can often be worse than what ails you) and I begged him not to.  It has turned me from a slight, run-of-the-mill lunatic into a stark, raving mad lunatic.  And it's made me very hungry. In case he wasn't getting my point, I said, "Gee, your office chair looks yummy."  "So we're not increasing the prednisone?"  No, Dr O, we're not increasing the prednisone.  He also wants to do a full body and brain scan, which amounts to a fishing expedition and since I am not a fisher-woman, I declined for the time being.  More blood work and the usual "Keep hanging in there!"  *sigh*  Funny thing about being a stark, raving mad lunatic.  I recently had someone comment on how emotional I've been and ask if I could be pregnant.  I did my best to be nice, I really did.  I tried to remember the source, I really did.  Then I just blew a gasket on the poor soul and reminded the person that I am on chemo and prednisone (among other serious medications), I just had my child diagnosed with AS, we're still searching for more answers and solutions for him and oh yes, my grandfather also died.  NO, I AM NOT PREGNANT!  FORGIVE ME IF I'M A BIT EMOTIONAL RIGHT NOW!  *ahem*

Shawn and I are talking about marriage counseling.  Not because we desperately need it or because we're in dire straights:  But because we don't want to get to that point.  Did you know the survival rate for a marriage with a child on the spectrum is only 25%?  When the divorce rate in this country is already 50% and Autism in the family increases the chance by another 25%, that's really, really scary.  We've already survived a lot and we just want to make sure we have the tools to survive the rest of what's thrown at us ( if you can dodge a wrench....   Quick!  Ten points to the person who gets that completely out of left field movie reference!!!!).  This is us providing not just for our future, but our family's future, too.  We want to make sure it's always us against the world.  Shawn asked me if I thought our marriage was "that bad" that we need counseling and it surprised me.  We have our ups and downs, but I've never thought of it as "that bad."  I told him no, I just want to make sure it doesn't get "that bad."  It's scary to think about.

Our church's children's ministry put on a spectacular multi-sensory event last night titled, "Journey to the Cross" for the families, which we went to together.  There is an upcoming baptism class for the children that Noah is interested in (my heart is dancing!), so we really made Noah think about each room we entered, really peppered him with questions and didn't settle for the usual "I don't know."  We wanted him to THINK about what Jesus did for us.  Even though Avery wasn't feeling well, he seemed to enjoy being out, then we had a good time on the drive home, too.

I was able to talk with some of the other moms in Noah's social skills class today, too.  That was extremely helpful for me.  I'm always picking other people's brains to find out what has worked for their children and what hasn't.  Shawn and I tried attending a local autism support group and while it was good for us, we felt like intruders.  Noah is on the very mild end of things and these parents had a lot more issues than we will ever deal with.  Talking with these other parents today in our own little impromptu support group was good for me.

And best of all, Asperger's did not leave me lonely on the hour trip to Noah's social skills class today, like it normally does.  Instead, Noah and I had one of our deep talks that I enjoy so much and always hope for (prompted by him!).  It was his turn to pepper me with questions.  He always has such good ones and I love these talks with him.  They connect us as mother and son and get me through until the next rare occasion.

Sooo...  Perspectives.  This is my lesson for the week.  These storms may pass, but unfortunately, there will always be more.  These are the storms in which we learn to dance.  Not to hide, not to put up umbrellas, not to curl up in the fetal position and cry (no matter how badly I want to).  It may not be a graceful or beautiful dance, but it is one we make our OWN.  We learn to take the hands of our loved ones and DANCE OUR HEARTS OUT, no matter who is watching (it just might be our children, this just might be a teaching moment...).  I don't know how I got so lucky, but I do know that if weren't for the storms, I wouldn't know how to dance.  Amen?  A-MEN.

Who's Your Daddy? (Laying Down Your Burdens)

I'm one of those 34 year old little girls with issues.  I'm sure you've figured that out already.  For the most part, I grew up in a loving home.  I believe my parents did the best they could with what they had (don't tell my mother I said that; she still thinks I'm rebelling).  However, I still have issues.  No, I wasn't abused by my dad (thankfully).  In some ways though, it was worse.  I wouldn't say he was necessarily neglectful, but definitely absent.  Even when he was home, he was emotionally gone.  My dad was a military man (USMC, oo-RAH!), so he was seldom home.  Still, I had it better than some of our military friends.  We were stationed stateside, traveled very little and never saw overseas time (as a family).  For years, we blamed his emotional absenteeism on his time in Vietnam, but now that we know about the Autism/Asperger factor in our family, it makes me and my mom very curious.

My parents divorced several years ago.  Even though, in reality, it should not have taken any of us by surprise, it rocked my world.  I knew my parents had problems, but I thought they were workable.  Certainly, this was just my stubborn mother's way of getting my father's attention?  Nope.  She was dead serious.  She was gone.  It was nasty and it tore our family apart.  My sister and I have never had the relationship I've wanted us to have, my marriage was not unshakable and I was getting really sick really fast.  My mother moved back to Maine and I moved on with picking up the pieces of my father and what was left here in Virginia.  I didn't have much of a support system and I wasn't sure which end was up.  My dad moved into the city, closer to his job and came out here to stay with us on the weekends because he didn't know what else to do with himself.  Not knowing how to be on his own, Dad quickly started dating online.  As quickly as he started dating, he married a woman I did not approve of.  Neither did she like me, so I was not told about their wedding until several months after the fact (not even by my sister or my father's family).  Long story short, my father and I have not spoken in over 6 years.  He made the choice between his daughter and grandson (there was only Noah at the time) or his new wife.  To the best of my knowledge, he does not know about Avery (although I'm sure his family has told him).  While it is painful for me at times (and my children, who do not understand the abandonment), I have to realize that if he were still in my life, it would not be a healthy relationship (especially now that it includes his wife) for me or my children.  I have prayed for years to be able to see my father as human, to be able to forgive him.  Hopefully someday, I will.

All of that is background for the "real" story.

Please don't feel sorry for me.  I told you that as background, not as a sob story.  I had to learn and come of age with my earthly father so I can truly grow with my Heavenly Father.  It hit me like a ton of bricks one day in church a few years ago.  A friend of mine was singing with only an acoustic guitar as her background (which, with her voice, is simply a beautiful mix).  The song was Amy Grant's "Lay Down (The Burden of Your Heart)."  For me, this is a very emotional song.  Here is the chorus:

Lay down the burden of your heart

I know you’ll never miss it

Show your Daddy where it hurts

And let your Daddy lift it

Listening to my friend sing this song (almost a lullaby for me), sobbing silently, I felt at peace and weird, all at the same time.  A new reality hit me:  I had been asking the wrong daddy to fix things all my life.  A calm swept over me as I realized that my Heavenly Father is the only one who will never disappointment me (that's not to say I always agree with Him!): HE is my Daddy.  HE is the only one I can rely on and He will never abandon me.  I wanted to smack my forehead (DUH!): I'd been looking at things all wrong.  He calls me princess, daughter, beloved, beautiful.  He values me, He sent His only begotten son to die on the cross for me, He created me in His image.  He knows what is best for me and plans accordingly for my life.  He has walked these paths ahead of me and would not ask anything of me that He does not believe I am not strong enough to handle without His help.   He is my provider, my comforter, my healer.  He loves ME. What a startlingly new reality for me.  Likewise, even though my boys have a very wonderful earthly father, God is also their Daddy.  We're in this together.  God is the Ultimate Parent.


Last week was a rough one for me.  The past few weeks have been rough for me.  I've been going to churches for years, but I've never thought of my priests and pastors as anything other than that:  priests and pastors.  Last week my pastor sought me out to ask how I've been doing.  Not only that, he grabbed me up in a big bear hug and prayed over me after I broke down crying when he asked how I was doing and I couldn't answer him with words.  He held on to me until I was okay, then told me that not only is he the pastor of our wonderful church, but he likes to think of himself as the dad of the church and the women as his daughters, myself included.  This gentle man has not known me long enough or well enough to possibly know my daddy issues, but his simple statement went right to my heart.  Once again, I knew we'd chosen the right church for our family.

Do my daddy issues with my earthly father still pop up?  Absolutely.  I'd be lying if I told you otherwise.  I pray that someday I'll be able to go to bed one night not having thought of him that day, wondering if he has thought of me that day, knowing that most likely he hasn't.  I pray that with time, peace will fill over the hole in my heart and ease the ache.  I pray that I will find ways to ease the ache of abandonment that my sons feel and don't understand.  I pray I will be able to let go of the anger I feel each time I am reminded that for whatever reason, Noah blames himself that my father left us.  I pray that my family and I can finally heal these wounds.  I often wonder what I'd do if I were to pick up the ringing phone or answer the door to find him on the other end.  Reality tells me I don't have to worry about knowing the answer because neither will ever happen.  He has moved on and I need to do the same.  So, I'm moving on with God--My Daddy--whom I have promised to praise in the good and in the bad, and who has promised to always be with me and my sons.  Thank you, God, for loving us and for being our Daddy.


I tried to find a video for Lay Down (the Burden of Your Heart) because you really have to hear it, rather than read the lyrics, for the full effect.  Unfortunately, I gave up after an hour of searching.  I did find another link that you can listen to, though.  I hope you will take the time to listen to this song.  So, sit back, turn up the volume, close your eyes and enjoy!

http://new.music.yahoo.com/amy-grant/tracks/lay-down-the-burden-of-your-heart--178513633

A Horse Named Molly

I'm in love with a horse named Molly. 

In the last three months, since Noah's diagnosis with Asperger's Syndrome, we've met with numerous doctors and therapists.  We've been in occupational therapy since his diagnosis and social skills therapy before his diagnosis, are still waiting to be approved for physical therapy and have been denied for speech therapy.  We're on a waiting list for a second opinion (routine stuff), we're fighting with insurance over the speech therapy denial and are exploring other avenues of help for our son. We've pulled him from private school and begun homeschooling him.  We have read every resource we can get our hands on and picked the brains of everyone we can find.

We want to see improvements, we want to see something worth getting excited about.  Instead, we see more setbacks, more frustrations and no improvements.  We haven't dared to get excited about anything.

--UNTIL TODAY--

Noah had his first therapeutic horseback riding lesson today.  With all due respect to my husband (who is a really great dad), Shawn has not been able to get himself worked up about trying this latest avenue for Noah (he freely admits this).  He had to take Noah this morning because I had a doctor's appointment that conflicted with the timing of Noah's lesson.  It was the best thing that could have happened!   The excitement in my husband's voice and the look on his face are things I can't convey in writing, but it was amazing!  Both Shawn and Noah were so animated about it!  And the change in Noah today has been astonishing.  We did not have a single problem with him all day long.  He was calm, he followed directions, he listened, he didn't have a problem settling down for schoolwork, he played with Avery and was just a completely different child the rest of the day.  He was happy and agreeable.  He was able to stay on task and concentrate.  He even reacted quickly, when, unbeknownst to either of us, Avery had wandered behind Shawn's car as he was backing out of the garage.  Normally, Noah doesn't react to these sorts of emergencies.  Today, Noah grabbed his brother right out of danger in the nick of time, yelling to Shawn at the same time so Shawn was able to react in time.  Monday nights are usually interesting for Noah; a friend of mine comes over with her two boys for dinner and Noah acts like a wild man.  Tonight, he was calm and relatively collected.  He played an entire board game with his friends without trying to change the rules to suit himself, without a temper tantrum, without giving up halfway through and remaining relatively calm but having fun.  Shawn and I couldn't believe what we were watching.  Was this really our Noah?  Is it possible that we have finally found the 'magic button' for Noah?  Do we dare get our hopes up and get excited about this after only one lesson?  We desperately want to, myself especially.  Seeing how excited Shawn is (the man who refuses to get excited about anything), it's difficult for me to not get excited.  Shawn said Noah looked like a natural sitting on Molly.  Have we finally found something that Noah is naturally good at, something he will thrive in, something he loves and enjoys?

We found this equine therapy center through a friend at our church, who is an instructor there and is now Noah's instructor there as well.  I emailed her on a whim, knowing she rides horses, wondering if she knew of anyplace nearby that had a therapeutic facility.  I had no idea she's an instructor.  Not only is she an instructor, she's a teacher with a special education background.  We found out that after I submitted Noah's application, the waiting list jumped to 120 applicants. It's all fallen into place so easily. I have to believe that God led us here.  This is where God wants Noah to be, this is where things are going to happen for him.  I have to believe this is our chance at hope for our son.

Thank you, Molly.  Keep up the good work!

World Autism Day

April 2 has taken on a new meaning in our family.  Yesterday we observed World Autism Day, now that we have officially welcomed Asperger's into our lives.  It's one of those days that snuck up on us. Although the fact is, it's been living with us for years.  Autism Awareness Month has a whole new meaning for our family.

It's been a rotten week for me.  Asperger's (with a little help from life in general) has kicked my butt from east to west.  I really don't know how moms with more autism in their lives do it because I've completely forgotten how to laugh this week.  I've been frustrated and angry, not with Noah, but with AS.  I'm angry with what I feel has been stolen from me and I'm frustrated for what my son goes through.  He deserves better than what I have been able to give him, especially this week.  I'm exhausted and frustrated by life in general, concerned for my mom and grandmother, still grieving over the loss of my grandfather, I'm frustrated for my son, my health is continuing to decline, and my meds are taking their own toll.  Depression has made a nest in my brain and my body.  And that feels like just the tip of the iceberg.  Frankly, I am surprised to still be standing after these past four weeks.  I am just plain worn out and in need of a break.  I'm feeling very weary, burdened and defeated.  But I have to keep moving because I'm the mom and this is what I'm supposed to do.


Saturday I felt like I had a pretty good handle on things.  Better than the rest of the week, anyway.  Until I got to the grocery store, was flipping through my grocery notebook and found a note that I'd written to myself several months ago to send pictures of the kids and notes to Denny.  I felt like I'd walked face-first into a concrete wall.  I couldn't help it, I just started sobbing in the middle of the store.  Poor Avery, sitting there in the cart, looking at me and asking, "Mommy?  Mommy?"  The week just caught up with me.  The enormity of all my responsibilities, the importance of the meaning of World Autism Day, and then finding the note to myself.  So, what happened next?  My guardian angel showed up.  She's the mom of one of my high school friends and has shown up twice to rescue Avery and me from disastrous grocery shopping trips.  The first time was right after Noah's diagnosis.  I'm sure my friend would find it amusing that I think of her mom as my guardian angel, but we live on similar planets.  She's raised (is still raising) a daughter with Down's Syndrome.  I don't share details with her mom, I keep it general, but just seeing her and knowing that someone else out there cares enough to stop and talk to me helps.  Mrs H, if you ever read this, thank you for caring and thank you for being my guardian angel.  You have no idea how much just your presence helped calm me yesterday.

Today, our church's children's ministry marked Autism Awareness Month by holding an Autism Awareness Workshop.   I'm very proud of our church and very grateful to our leaders for doing this. It was difficult for me to sit through and I had to keep wiping tears as I listened to the specialist describe my child.   Fortunately, I was with good people: children's ministry leaders and other parents who are on my planet, so it was okay (given how teary I've been all weekend and that I sobbed during church, I'm surprised I did as well as I did during the presentation! Yay me!).  We're one of the few churches in the area with a ministry specifically designed and trained to aide children with special needs so they can participate in the children's ministry activities while their parents attend praise and worship, worry-free.  Being a part of such an accepting church has made things with Noah's diagnosis much easier.  Knowing that he is Noah, and not "that ill-behaved child," or Asperger #1, has helped all of us.  Noah's case is mild enough that he is not officially part of the special-needs ministry (in need of an aide), but knowing that his Sunday School leaders are educated and trained to handled anything that may come their way because of him is a comfort.  Knowing that our church leaders and the congregation as a whole are educated and that Noah's behavior doesn't raise many eyebrows is a comfort. To belong to a church family where people do their best to understand Noah and his behaviors (instead of questioning me about the dosages of medications he's not on and if they should be increased) is powerful.

I'm still learning to embrace AS and everything that goes with it.  I've lived with it for Noah's entire life, but didn't know what to call it (well, I did, I just didn't want to.  Denial is a terrible thing to do to your child.).  Now I know he couldn't help it.  I'm trying to help him.  So this month, I'm lighting a blue light in my heart for my son because I love him dearly, he means the world to me and I will do everything and anything I have to do to help him through this.

For more information on Autism and Asperger's Syndrome, please visit these sites:
http://www.autismspeaks.org/
http://www.autism-society.org/
http://www.lightitupblue.org/