Guess Who's Not Coming To Dinner

Miss Manners, Emily Post, Martha Stewart... they will never be dinner guests at my house.

While the rest of the family dined on chicken and rice last night, Sean enjoyed an Italian sausage.  He doesn't like the texture of the breading on the chicken (too crumbly) or the rice (too slimy).  We actually have very few meals that all five of us like.  Pancakes and French toast.... maybe I should be an IHOP exec.

I remember watching the new tv show Parenthood.  I only turned it on because they were going to be portraying a family dealing with an autistic child.  I watched it once and vowed never again.  The scene had the father and son in a standoff over mashed potatoes and video games.  The son wouldn't be excused to play until he had eaten 10 bites of the potatoes.

After a short back and forth, the son simply counted down the bites and ate them.  No meltdown.  No crying.  No gagging.  Nothing.  If only it could be that easy!!!!

Sean would have gagged, drooled, cried, screamed, maybe even vomited.  Dealing with the texture would have been like torture for him.

And, in the end, we would have given up because we realize there are bigger, more important fights to fight.

Thus, Sean eats Italian sausage.... and most of the time he even uses utensils.  His love of spaghetti played a huge part in conquering that mountain.

His eating habits are far from "date" ready but, then again, he is only 12.

A Picture Leads To A Thousand Words

Today is Sunday, February 27th.  I only begin that way in the hopes that something will come to this mind of mine to write. 

Sunday is typically my day to fold laundry.  I wash throughout the week, folding when I can.  But Sunday is akin to my day at the spa.  I put a movie in on my laptop and dump load after load onto my king-sized bed.

Jane Austen's Persuasion will keep me company today.  It's about 4 hours in length.  Thankfully, I don't have that much folding to do!

You might wonder what persuaded me to start this blog.  Sometimes I wonder myself. 

It all started with pictures.....

I've taken thousands of photographs of the kids over time and have only in the past year begun taking photos strictly for my own enjoyment.  Icicles, snow on an overturned leaf, flowers, the sun filtering through the leaves....  I use a website to download my pictures and turn them into photo books to mark special events - the first Cubs game, a special camping trip. 

Maybe it was my father's death in November that prompted me to finally do something completely and utterly for myself.  I took my favourite photographs and had them made into a black, leather-bound book with an inspirational story woven throughout.  I called the book "Just One Moment" and it talked about life, enduring love, friendship....  It asked readers to take a walk with me through the wanderings of my soul. 

It was the first time I had ever done something like that.  It was exciting and yet so scary to bare yourself  for the world to see - or, at the very least, the guy at the photo store.

I showed the book to a friend and from there the idea of a feel-good fuzzy blog of my pictures sprang forth.  Another friend suggested that I write a blog on autism instead.  Really?  Me?  I was reluctant at first...and second... and third.  But the idea stuck with me.  I started to write little tidbits about Sean and over the course of a month I began to think, "Yea, maybe I could do this."

My friends said I could make a difference.

Unbeknownst to you, my reader,  I just stepped away for a few moments to schedule an appointment for donating blood next week with Lifesource.

Donating blood is something tangible.  You know you're making a difference.

But writing a blog about autism - hoping to connect on some level and make a difference in the cyber world???

Well, that certainly took an epic act - Austen-ian in proportion, perhaps? - of persuasion.

Skiing in Shoes

Spring can now officially come to the Midwest.  Yes, that's another tidbit about me.  I live in the Midwest.  Elk Grove Village, Illinois to be exact.  If you Google it, it might come back telling you that we were one of the top receivers of snowfall in the Chicagoland area for the Groundhog Day blizzard of 2011.  Twenty-two inches in about 19 hours.  Not the biggest snowfall by far, but the wind gusts of 50 to 60 mph made for some very interesting photo opportunities with the kids.

Nonetheless, this year I truly think that more adults believe in Punxsutawney Phil's prediction of an early Spring than children believe in Santa Claus.

We can only hope....

And now that I have taken Carissa for her much-promised, first-ever trip down a ski slope, Spring is welcome to arrive.

Having it coincide with her birthday was lucky.  This trip began purely out of "mommy-guilt."  I took Sean skiing with the Boy Scouts earlier this winter.  Oh, what an event that was!!!  It's not like I could pre-teach him on Wii Ski or have him experience anything like flying down a slope, a mere bumble away from careening into a tree or at least an ice-hardened snowbank beforehand.  No, this was learning on your feet - or your bottom - at its best.

I almost called it quits within minutes of leaving the ski lodge that day.  Sean was trying to actually "walk" in his skis.  He would pick one up high off the ground and then place it back down....on top of some portion of the other ski.  The trip-ups were many.   He didn't want to listen to any of my advice on how to get up.  He didn't want to have me touch him or help him in any way.  "I know!  I know!" Sean would scream and I would shout something back like, "No you don't!"  Intelligence was not my strong point right then....

And my patience was wearing really, really thin.  I have to admit this.... somewhere along that seemingly endless stretch of path, I clenched my teeth and said some very un-mommy like things.

We eventually made it to the "moving sidewalk"  (sooooo much better than a tow rope!!!!) that would lead us to the top of the bunny hill.  My shouts of "snow plow!" went unheard or were ignored and he barreled down the hill.

Success.

Skiing some yards behind him, I threw up my ski poles and hoorayed hoping the whole world would hear and look over to see my kid have his moment.

He made it down that time and the next.  Aside from a mishap on the sidewalk system (you can't look back or you'll lose your balance), the hill was mastered in only a few tries.  We moved to the next hill and then finally a hill worthy of a chairlift.

It was probably the height that made Sean listen to me.  Maybe I should give all instructions from now on while dangling perilously without safety devices of any kind twenty feet in the air.... Hmmmm...... 

I talked him through the unloading and he did it like a pro.  Yea for Sean!!! 

All day he did great.  We had some oops along the way - like when he would try to anticipate the chairlift unloading and would jump down to the ramp.... subsequently tumbling and sometimes taking me with him. 

He never did heed my pleas for him to snow plow or slow down.  That must be the kid in him because today, Carissa didn't listen either.

Sean had a fantastic time.  The good memories covering the bad.  It was a big day for him.

Today was Carissa's big day.  She was beyond super - quite a natural.  I'm glad she played the mommy-guilt card.  After Sean's ski adventure she made sure that everyone knew that Sean got to do cool stuff and that she didn't.  I tried to reason that he was 12 while she was only 10 and that she could learn when she was his age.  But sometimes you have to leave reason behind.  Sometimes you have to be in her shoes.... the shoes that go from therapy to doctor and back again.  The shoes that can't have playdates over because Sean can't handle the added stress from an extra person in the house.  The shoes sometime deserve a break - a two year break in this instance.

We all deserve a break sometimes, don't we?  I'm just glad in this case it wasn't a leg.....

Who Needs Superman?

It's either amnesia or age that I am afflicted with.  For obvious reasons, I'm going with the self-diagnosis of amnesia.

"Mom, do you remember my first word?"  Uh, no... not without that baby book that I kinda sorta never made....

"Mom, do you remember what it was like when I was a baby?"  Geez.... sleep deprived?  Yes, that's my final answer.

What's the saying?  Time heals all wounds.  I have found that its power extends beyond the broken hearted.  It can erase the memories that would be too overwhelming to re-visit.

Today I wanted to bang my head against something.  The reason was quite small but the scope was not.  I was making Sean's lunch this morning, marveling how much my little - though growing - boy could eat in such a short time.  With the new appliance/retainer, I have often been questioning his likes and dislikes, easy and not so easy to eat, food choices.

"Sean, how's lunch going?"

"Well.... great if I had enough time to eat it."

"But honey, you come home with an empty lunch bag every day.  Aren't you eating it all?"

"Well....no."

"What do you do with the leftovers?"

I know what's coming next.  And I know it's minor compared to the world's problems but it is absolutely going to cause me to freak out inside.

"Well.... I throw them out."'

Where's the wall?  Where's the cement ground?  Where can I bang my head out of frustration?

I'm frustrated not due to the waste of food or the money, although that does drive me a bit nuts.  It's frustration in myself because I didn't see it.  I should have known.  I should have caught it and I didn't.

Sean used to bang his head...yes, even on the cement ground.  I know he used to do it alot but time has let me forget all memories of it except one.

We were outside playing on the driveway.  Sean must have been 2 or 3 years old.  He started to have a meltdown.  By now I knew what was coming.  He threw himself down.  You hear that first sickening crack of his head on the cement.  You just die inside but you have to be calm.  You throw yourself down and cup your hands behind his head and let your fingers take a beating until you compose yourself enough to scoop him off to safety. 

And then afterwards you sit and cry. 

Sean has since stopped banging his head.  But when will I?  When the last painful memory has been eradicated by the pounding?  When I become "Super Mom" and never make a misstep, never miss a thing, with regards to raising Sean and his sisters?

Then again, maybe time has given me a gift by not letting age or amnesia erase this memory.  Maybe I'm supposed to remember so I can look back and see how far he's come and how far I've come from those days where I would sit motionless at the kitchen table with tears streaming down my face.

Maybe those moments remain so I can say, "Hey, remember when....?" and know that those days are over and now it's just food.

It's just food......

I think it's time to take off the helmet.  But I'll keep the cape on.

A Special Kid Indeed

Today is not about Sean.  Rather, today will be all about Carissa.  Happy Birthday to my beautiful, brilliant baby girl (shhh....don't tell Ashley I called you my baby!)

From the very beginning - and I mean the VERY beginning - Carissa was different from Sean.  Months of fertility treatments, a seemingly elephant's-length gestational period, complications, 25 hours of labor, an emergency C-section, more complications.... that was all Sean.

Carissa was my surprise during my first visit to the doctor to BEGIN fertility treatments.  When I told my parents, they said, "Wow, those fertility treatments work really fast!" 

No, Mom and Dad, let me explain....

Her pregnancy was a breeze except for the day she decided to turn and attempt to push every rib to its breaking point.  She and I were monitored more closely than the Thanksgiving turkey.  She was, after all, more anticipated.   Even labor was going to be induced and timed to avoid a near fatal complication that I had suffered with Sean.

After 10 hours they brought the scrubs in and said, "Time for a C-section."  Carissa thought otherwise and arrived via a grand entrance indeed.

Carissa was not going to be like Sean.  She was going to be different.  She was going to be unique.  She was going to demand the world pay attention to her.

And pay attention we did.  It was always her and not Sean that would prompt the phone call to work making me scurry home.    It was always her....

You can't really blame her, can you?  She was born into a world that most kids don't know.  Born into a world of waiting of rooms, of doctor visits.  Born into a world with a brother who needed more than her parents could sometimes give.

She is amazing in spirit and bonds with her brother in almost a twin-like fashion.  They can fight like the most wickedest of children and then the next be intertwined like a pretzel sitting on the couch watching a movie.  When she would be punished and have her blankie or Barney taken away, Sean would  find them and sneak them back into her room thus risking punishment himself. 

They share the goofiest of youtube videos with each other.  If Sean is at the computer doing something interesting then Carissa is at his side.  If Carissa can do a task then I expect Sean to do the same.  She is the model of progress by which I measure Sean. 

They are close and one day will conspire against me as any siblings are prone to do.  I dread that day but will celebrate the milesone....

They are my twins - born 21 months apart, separate and unique as can be, and yet connected forever by this crazy thing called autism.

I don't allow the word "hate" to be used in my house but, if given the chance, Carissa will say that she "hates" autism.  "Why did he have to be born that way?"  "It's always about autism.  Everything is about autism."  Even this blog caused her one night to go stomping down the hallway.

I don't know why Carissa....  They say that God gives children of special needs to special parents.  But you Carissa, will know him the longest.    Maybe it's not the child or the parents that are the special ones.  Maybe it's the sibling.  Maybe it's you, Carissa, who is the special one.

I love you baby doll.  Happy 11th Birthday.

Calling An Audible

Do you remember the Peanuts cartoon where Charlie Brown would go to kick the football and Lucy - who was supposed to be holding it - would always pull it away at the last minute and good ol' CB would fall on his butt?  Nonetheless, he would try and try again....

To paraphrase the great Charles Schulz character....

AAAAARRRRRRGGGGGGHHHHHHHH!!!!!

Once again we have fallen on our proverbial butts with trying to outwit and outlast - but not outplay - Sean and his picking at his arms.

I thought we were making some sense to him, but where the one arm was showing some improvement before, it has now come to match the other.

Whenever Sean tells kids that he has autism, they automatically ask, "What's that?"  I think it's great that they ask.  We always reply that Sean's brain is wired differently - that he thinks differently.

Thus, telling Sean to do or not to do something for some completely logical reason oftentimes doesn't work. 

For example, Sean was extremely reluctant to learn cursive writing.  I don't write anything in cursive except for my signature.  Therefore, I hardly had any legitimate argument with which to arm myself.  However, Sean wants desperately to be independent... TO DRIVE.... ahhhhhh, we had the answer!!!!!  Once we told Sean that he had to learn cursive in order to sign his driver's license - as well as his checks - wha la. 

Issue over.

The key?  Think differently....

I have yet to find the magic words that will stop him from ripping his skin apart.  I truly, truly wish I could.  "They won't let you in the pool."  "Kids will make fun of you."  "Girls won't like you."  And, of course, the harshest of all, "Do you think this is normal?"  Sean wants so badly to be "normal."

He's always picked or fidgeted.  This recent issue with his arms has really gotten out of hand (boy, I wish I could say that was a bad pun but it's become a matter that not even I can find the silver lining for).  He's either grown out of it or we've been able to find that one thing that gets through those pathways in his brain and makes sense to him.

Think differently....

Is this new phase due to stresses from being partially integrated into the local junior high school?  Is it a manifestation of some adolescent issue?  Is it no different than any other phase - simply more noticeable?

I am, for now, at a loss....

But will I get that football out again and give it another try?  Damn straight I will..... but Lucy will have to sit it out on the sidelines.  I have to, after all, think differently....

Destination Nowhere

Today is a "Go Nowhere" day although the term is strictly relative considering I will be making four trips to school.

I have a routine - don't all parents of autistic kids do?? - of standing in the bedroom hallway after I have said my good nights to the kids and announcing - not too quietly lest the pre-teenagers complain that they didn't hear me - the agenda for the following day.

"Tomorrow is a Go Nowhere day." 

A faint "yea" emanates from somewhere - possibly from within my own head.

"Go Nowhere" days are essential to my family's overall being.  The base of a house of cards.  In a world that lunges forward on full throttle almost every day with therapy, girl scout and boy scout happenings, gymnastics, Battle of the Books, and any other semi-important-will-die-if-we-skip event, "Go Nowhere" days are a welcome respite.  Of course, any day that I can spend in my pajama pants is a day worth getting out of bed for and living to its fullest.

We joke that the house better not burn down on a "Go Nowhere" day because Sean would gripe about having to then go somewhere....

He needs these days.  Days where he can come home from school and let his guard down and be his true autistic self.  Days where he can grab his MP3 player, listen to some music, and walk around the house.  Days where he can talk to himself in his room for hours.  He can fidget.  He can play computer games. 

Do I break the magic spell that "Go Nowhere" days cast and tell Sean that on these days he does indeed go somewhere?  He goes back to his world.  A world where he's comfortable and doesn't have to conform to whatever definition of "normal" is for that day.  A world that he understands and we don't.

What's wrong with believing in a little bit of magic?

I will spend the day catching up on laundry after yesterday's poop and puke fest courtesy of Smokey.  Later I might even get on the exercise bike and try to ride off that extra piece of cake I had over the weekend.

Then again, that would involve me changing out of my pajama pants.....

Only My Door Says "Go Away"

Alone again... naturally.  It's a song by Gilbert O'Sullivan from somewhere around the 70's.  I know I'm dating myself.

Hello world, I'm 43....

It was probably one of the first songs that I knew every word by heart.  Heck, I used to pride myself on being able to sound like him.  Why a song about being alone would resonate in a young child with eight other siblings mystifies me.  But it did.

You see the word "alone" featured throughout this blog.  It's not meant entirely as a bad thing.  After all, no one can be in our minds and souls...our hearts.  Every moment... joyous, mundane, crushing... every scene of our lives is uniquely captured by our lens.   We are, thus, alone.

When I am overwhelmed by the world I either hit the exercise bike to escape my thoughts or I hit the shower to be engulfed by them.  I am alone with only my sweat or the steam as my survival gear.

Sometimes I need that gear to get through the alone that's not so good...... 

Yes, I am just a mom.  A parent.  Like you.  And you.  And you.....  But we are different from the rest of the world just like our children are different.  We are parents of autistic kids.  And only we can know the world that we so intimately inhabit.  The word "autism" means so much to so many... the medical staff, the researchers, the educators.  But for us the word "autism" oftentimes means "alone."  We are alone with our thoughts, our fears, our guilt, our struggles.  No one - not even our partners - view our child through the same eyes or with the same heart.  So alone we are....

 

But we are not really.  Together, we are citizens of an amazing world thanks to our children.  Our special, wonderful children.  They are gifts to us.  We may not always think so, but they are.

 

I have two other children besides Sean.  Both girls.  My three children are as unique as snowflakes.  They are my purpose in life.  The ultimate fulfillment of my dream job... of being a mom.  Granted, they also provide daily, scientific proof, incontrovertible evidence why mothers in nature sometimes eat their young - of which mine require a special spice blend.

 

I welcome you today.  As a friend.  Come sit with me.  Bring your coffee.  I am not the greatest of hosts.  I will serve you once and then you are to consider my home as yours.   By the time you take your second sip, you will know that I do not preach.  I do not judge.  I am not the final answer.  I'm just a mom.  And I feel alone, too.

 

Maybe by sharing my world.... my world of challenges, of laughter, of tears, of incredible Aha moments... I can selfishly hope that I won't be so alone today.  And maybe, just maybe, you won't be either.

 

So welcome my friend.....welcome. 

A Morning Mixture of The Good, The Bad and The Ugly....

The Ugly....

I am awakened this dreary Sunday morning by the retching of my almost 15 year old German Shepard/Boxer mix in the vicinity of the Littlest Pet Shoppe/Lego explosion that once was called my living room and Sean yelling "Smokey!" 

I feign sleep.....

The Good....

Ashley had a rough time last night and Sean, being the good big brother, either called out to us that she was coughing (she was sleeping with me so we already knew) or one time even came into our room, using the light from his newly acquired video MP3 player to show him the way, to comfort her himself.  It was such a sweet moment when he put his arms around her and said, "It's ok Ashley."  Awwwww....

The Bad....

Yet another day of fighting through the fog that inhabits my son's autistic brain...

I guess you can call it stimming although I almost never use the "official" words of the autism world.  Sean has always had his fidget toys, his hand flapping, his turning in circles, his constant stream of monologues.  In the past few years he's even turned to cracking various joints.  Oh joy....

As a child, Sean had what I called "baby acne."  No big deal.  But as his fidget toys have come and gone for various reasons, he realized that his skin stays with him forever.  It is one of the ultimate fidget toys.  No one can ever take it away from him.  Upon his entry into adolescence he began picking at the baby acne on his arms and legs.  Again, no big deal and nothing that some Neutrogena, a prescription cream, and constant "mom monitoring" (Sean likes to call it "nagging") could not ease.

However, during the past few months, whether it's been due to the new stresses at home or his new stresses of being integrated or just plain adolescent angst, the picking has gotten out of control.  Hundreds and hundreds of marks on his arms.  Last night I discovered them on his legs hidden under his shorts.

Hundreds.....

There are times that I sit shocked, sometimes horrified, most times scared as I think of what life must be like for Sean.  Why?  Why would he do that to himself over and over again?  He says he's just getting rid of the bumps.  His skin is so marked up, how can he even tell if he has a bump??? 

Hundreds....

I sit....

Eventually I throw my hands up in the air and walk back into the kitchen.  Back into my life.

You talk.  You cream.  But you have to wonder what is really soaking through....

Sleeping Through The Night....At Age 8

I'm tired today.  Not because of  twelve-year-old Sean but because of his croup-y, four-year-old sister Ashley.  Sleep is such a rarity.  I barely remember slumbering for a full eight hours....

Sean finally started sleeping through the night when he was 8 years old.  If you already did the math, that was right about the time we brought Ashley home. 

Talk about bad timing!!!!

It would take him hours and hours to unwind and eventually pass out.  We tried everything - classical music, lavender in the bath water, even bought a fish tank with bubblier.  We even tried - against all of our parental instincts - medication.  Of course, being hyper-sensitive to any medication we seemed to give him at the time, the prescription sleep aide we gave him had him awake for 48 hours and he forgot his alphabet.

Even when he did finally fall asleep he would continue to wake through the night.  Afraid of the dark?  Night terrors?  Who knew?  But it was shredding our sanity bit by bit.

It was an off-hand remark at some function by someone we didn't know who saved us.  We tried a natural supplement and it worked!  Even better.... it hardly cost a thing!!!! 

He slept... and we slept.  Peace at last.  Until the baby cried....

Today I will worry....

Today is one of those days. 

Sean got his semi-permanent "appliance" (think "retainer") put in the other day and his mouth has been hurting.

I forgot to give him something this morning for the pain before he went to school.

I found out last night that one of my closest friends from college had died.  This morning I was still in my own world of disbelief, of grief.  I was caught up and forgot....

Do I run over to school with some medicine?  Do I wait for the school nurse to call?  Will he go to the school nurse?  Or will he, not realizing he's reacting to the pain, have a meltdown over something completely unrelated and that will cause a snowball of consequences and jeopardize his integration and everything we've worked so hard to achieve?

So today, as a mom, I failed because I forgot.

Shoe Laces and the Passing of Time

As usual, Sean was in his typical mode - somewhere between slow and calculated - and I was rushing around to make sure my newly partially-integrated junior high kid was not late for school.  While I watched the clock to see how fast time was ticking by, he watched the clock to make sure he got in his FDA required amount of time brushing his teeth.

To help save time, and my sanity, I went to the front entryway to grab Sean's shoes.  I figured I would untie them and save what, oh say, 30 seconds???  I grabbed them and started to walk away.

Then I stopped.  Stuck in a memory.

The left shoe was tied in a single bow knot.  The right had a double bow knot.

Normal.

I stared some more.

Normal, I said again to myself.

Sean didn't learn how to tie his shoes until he was in 2nd grade.  Low frustration level, fine motor skill difficulties.... It took months and months and in the end, it wasn't even me who taught him this great milestone in life.  I remember being in the waiting room of his occupational therapist when Kam came out and announced to everyone, "Sean just tied his shoes."  Everyone celebrated that moment because you know us "waiting room parents"... we are sometimes our only support system.  We become family....

I cried as any proud parent would.

Of course Sean never wanted to waste his time in life dealing with the trivial matter of tying and untying his shoes so for years he would knot the laces until there was no lace left.  Six, seven, eight knots.  Every now and then I'd untie them all so he could practice tying his shoes.

Today I picked up his shoes and was stunned.

Normal....

When did that happen?