Wednesday, June 29, 2011

A Rough Outing

Meltdowns and volcanoes are similar.  They both
make a big boom.
I walk into Publix with a look that I can only describe as a cross between crazy person and hobo.  My hair is disheveled, sweat is pouring off of me, and there is dirt all over my face and arms.  I hold Jack in my arms, who looks similar, except he has gravel strewn about in his hair.

We've just come from the park.  And it wasn't pretty.

Actually, everything about our outing to the park was pretty typical initially.  We had a playdate at the playground, and there were no meltdowns, which I consider to be a successful playdate.  After our friends left, Jack and I remained at the park for a bit to finish a snack.  Jack went up and down the dinosaur slide a few times and then engaged in one of his new activities at the park, throwing away every leaf, stick, or piece of mulch that he sees.  It occupies a lot of his time at the park, because the park tends, by design, to contain a lot of sticks, leaves, and mulch.

He finally got to a point where he felt as though he put a dent in the stick count at the playground, and he came up to me and signed "all done".  He started scrambling up into my arms, which is his cue that it's time to go.  I picked him up and headed out.

Now, both Jack's OT and ABA therapists have said that Jack needs to start walking on his own and that I need to make him walk.  I'm mentioned to both that he won't do that for me without a meltdown, to which I've gotten the response that he physically can and he should.  Typical kids have been walking on their own for a while by the time they're Jack's age.  Well, yes, physically Jack can walk.  Behaviorally, he won't.  And it's hard to reason with someone who has very little receptive language.  I'm not sure why, maybe it's motor planning, maybe sensory, but he won't do it.  I don't think it's a matter of being stubborn, either.  He seems terrified, almost paralyzed when I try to force him to walk.

So, I set out to get Jack to walk with me to the car.  I put him down on the ground and he immediately started screaming.  He started to scramble back into my arms, so I stepped a couple of feet away and encouraged him.  Come on buddy, you can do it!  You can're a big boy!  Nope.  He collapsed to the ground, continuing to scream.

I tried the next tactic, hand-over-hand.  Essentially, I make his body do what I'm requesting and I praise him as though he's doing it himself.  I hoist him up and, holding him under his armpits, I attempt to make him walk.  He refuses to walk and continues to drop his legs.  He's dead weight in my arms and I'm struggling to hold him up.  All the while, I praise him, Good walk, Jack, but my back feels like it's exploding.  Jack thrusts his arms upward, giving me no ability to support him under his arms, and I set him down.  The whole time, he screams bloody murder.

We continue this cycle, over and over again, for 20 minutes.  We've moved about as many feet.

It's hot outside.  Jack's hair is soaked with sweat.  People begin to stare and I see an older lady from across the playground pointing at us.  I get nervous about what people might be thinking.  My kid is screaming as though he's being tortured and I fear that these people are looking at me as though I am abusing my child.  If they only knew that I'm just trying to help him gain some independence.  If they only knew.

The last time I set Jack down, we've made it about 30 feet away from the playground.  We have much further to go.  Jack throws himself onto the gravel path and begins banging his head on the ground.  I can't take it anymore, and I sit him up.  I can just hear his therapists' voices in my head, saying that I need to make him do this, but it's been over 25 minutes.  Jack grabs handfuls of gravel and dirt and flings them in every direction.  It's as though he's completely lost control and there's nothing I can do, except for picking him up, to get him back.

I wish it was easier.

I reach in my diaper bag and grab a baby wipe.  I wipe the dirt off of his face and hands.  I try to calm him down, but he's too far gone.  He won't support any of his own weight.  He won't take a sip of cool water.  Other people continue to stare.  "Someone didn't want to leave."  "Someone needs a time out."

Someone needs to mind their own business.  He's not misbehaving; he is autistic.  

I want so badly to say that to the onlookers, but I don't.  It's not worth it.  Jack's not a typical 2-year old.  Jack can't self-calm.  When he melts down, he needs a maximum amount of assistance to recover.  If I hadn't picked Jack up, the meltdown would have lasted another 40 minutes or more.  Jack, for some reason, isn't comfortable walking.  Physically, he can.  Mentally, he thinks he can't.  Since he doesn't imitate, he isn't going to try to walk like the big kids do.  Sensory-wise, things set him off that I can't even understand.  This has the unmistakable appearance of a sensory meltdown.  It's uncontrollable.

So, I pick him up, vowing to enlist his ABA therapist's help to figure this problem out, before I do more damage to my spine.  I'm dirty, covered in sweat, Jack's continuing tears, and bits of gravel and dirt, we both head to the car.  Once he's in, he continues to fret and cry.  I manage to get him to take a drink, and he drinks it quickly, sobbing all the while.

I'm exhausted, but I'm trying.  He needs to learn these independence skills.  I have to help him learn.  Other people don't understand.  They can't understand.  I have to keep trying.  Soon enough, he'll be too large for me to carry.  I have to keep working at it.

Tuesday, June 28, 2011

The "R" Word

Until recently, I never was really sensitive about the language people use.  Sure, I didn't want people swearing around my kid.  I've been known to swear quite a bit under pressure, just ask Brian.  I'm nowhere near "the Old Man" in A Christmas Story, but sometimes a swear word seems like the only appropriate thing to say in certain situations.

There is one word that I have gotten a bit sensitive to in the past year.  It's the "R" word.  I'm sorry if you need clarification, but I'm not typing it out for you.

I started feeling sensitive about that word when I started to know that something was wrong with Jack.  Early on, we still felt confident that Jack didn't have cognitive deficits.  I mean, he couldn't, right?  He was my kid.  Me, the person who started reading at the age of two, I couldn't have a kid with a cognitive deficit, could I?

I was wrong.  I knew it, too.  He could, and did, have a cognitive delay.  When he later was placed on the spectrum, I feared that would mean his cognitive delay would one day mean an intellectual impairment.  Now that I know more about autism, I know that this isn't the case for many individuals on the spectrum.

Jack's therapists fully expect him to lose his cognitive deficit once he has the receptive and expressive language, plus the social skills, to perform appropriately in cognitive assessments.  Unfortunately, most standardized tests assume two things, a) that the person being assessed has receptive language (can understand what's being asked), and b) that the person being assessed can engage a clinician in the interaction required for such an assessment.  You can see how this works against a non-verbal autistic person.

When Jack tested as having a cognitive deficit and, later, when he was diagnosed with PDD-NOS, I couldn't help but pick up on when people used the "R" word in conversation.  It's become a term that is very ingrained in our culture and conversation.  It's become an all-inclusive term for people with intellectual and developmental disabilities.  It's also become a term that we use to describe anything that is "stupid", "dumb", or any number of other derogatory labels.

It appears in TV, movies, and, saddest of all, on our playgrounds, in our parks, and our schools.  Children who say this word learn it from adults who do.  What makes this word so deplorable is that it is used to describe a group of individuals, in a derogatory way, who in many cases cannot self-advocate.  They may be called this word to their faces, but may not understand it enough to defend themselves.  Or, they may understand fully, but lack the language to say anything.

I pray that Jack never comes home from school saying, "So-and-so said I was (the "R" word).  What does that mean?"  Or worse, I hope that Jack never gets called that word and doesn't have the ability to let me know about it.

When we say this word to our non-disabled peers, it makes it a word that is increasing acceptable for use in our every day language.  There are far too many children and adults in our society who have an intellectual or developmental disability.  You may not be able to immediately tell who they are.  You should watch your language.

After reading a post from one of my favorite autism mom bloggers, I was directed to a website where you could pledge to stop using the "R" word.  So, here is my challenge to all of you.  Think twice before you speak.  If you feel so inclined, take the pledge through the link below and leave a comment to this post letting people know that you did.  If we all pledge to think before we speak, and to remind others to do so, we can make a world of difference.

Take the Pledge!

Monday, June 27, 2011

Pushing the Wagon

For Jack's first Christmas, he was given a small Radio Flyer wagon.  I loved the idea.  I had a Radio Flyer wagon when I was a kid.  Of course, I chose to use it as a roller coaster on the track that was my very steep driveway.  The fence and basketball goal waiting at the end made it all the more exciting.

Jack's wagon is slightly different.  It's designed for babies and has a bar that he can use to pull to standing.  It also has wheels that do not allow him to propel himself forward too quickly.  After all, you don't want your baby to become a projectile.  Jack, for whatever reason - motor planning, muscle tone, or lack of desire - has never figured out how to push "push toys".  He'll move them in other ways.  The function of these toys alludes him.

Jack got this wagon when he was 9 months old.  He hasn't been much interested in it ever since he got it.  This seems to be the way with toys for Jack; he's a very difficult kid to shop for.  Almost universally he'll accept anything with Thomas the Tank Engine on it, but he's ambivalent about other toys.  He still mostly plays with infant toys, as he loves cause and effect.  Push a button and something lights up.  That makes him happy.  In fact, "purposeful" play is something that we're really working on right now in therapy.

We're also working on playing appropriately with toys.  For example, the best way to play with a toy is not to a) line a few of them up and stare, b) pass it back and forth across the floor in front of your eyes, and c) spin it.  As strange as it sounds, toys have a function and that's something that Jack's still trying to get.

That being said, in Floortime we'll play just about anyway we can with Jack, because it's all about fostering interaction.  Sometimes, in order to interact with Jack, we have to "go with the flow".  Lately, that's involved pushing Jack's wagon back and forth across the floor to him as though it were a ball.  Seriously.  Jack could do this for the longest time.  Not exactly appropriate play, but we're able to get some eye contact and signing out of the deal, so we keep doing it.

Until today.

Today, out of the blue, at the ripe old age of 27 months, Jack figured out how to push the wagon.  He's been working on pushing toys at OT for the past couple of months, so I guess it finally clicked.  And he loves it!  We were saying "Ready, Set, GO!" and he'd take off.  He was having he best time.  He melted down when it was time to go take a bath tonight because he wanted to keep pushing the wagon.

I couldn't believe it.  A simple task that a child much younger than Jack would have already mastered, but still seemed so out-of-reach for him, and he's doing it.  It was one of those skills, like waving bye-bye, pointing, and jumping, that I figured was just way down the road for him.  He did it, though.  My mind's now buzzing with all of the sensory activities I can do with this wagon!

Little victories, people.  Little victories.

Saturday, June 25, 2011

You Can Lead a Toddler to PediaSure...

...but you cannot make him drink.  This has become abundantly apparent to us this week.

Jack's pediatric GI recommended adding 8 oz. of PediaSure once daily for nutritional support.  We tried to ease him on to the PediaSure, but in crept the constant companion of sensory issues.

Apparently, Jack can detect mere drops of PediaSure in an 8 oz. cup of his standard fare - milk.  We were foolishly optimistic that the situation would work itself out when Jack took a whole cup of milk, spiked with a splash of PediaSure, at OT this week.  His OT said to start increasing the PediaSure in each cup, which seemed to make sense.

Not so, says the toddler.  Jack decided that the best way to avoid PediaSure was to swear off liquids altogether.  For a couple of days, the only way I could get any liquid down him was to hand-feed him a regular cup of milk.  He would only get an ounce or two a day this way, because his lips don't seal around a cup well enough for the liquid to not dribble right back out.

I knew this was bad, so I sent a "Hail Mary" call out to his therapy team.  I was desperate and needed to get fluids down my child and FAST.  What could I do?  Nothing seemed to work.  His OT responded immediately and said that if Jack wasn't drinking by midday that I needed to call the doctor and discuss ways to get him rehydrated.  Uh oh...the words "ER" and "IV fluids" were staring me in the face.

All of this for some PediaSure?!?

That morning, a Friday, was Jack's ABA session for the week.  We were meeting at the park for the session.  Jack's ABA therapist reiterated a similar concern for Jack's hydration level...he needed fluids and soon.  We sat down to snack and I set a cup of plain milk in front of him.  Plain milk which, thanks to his fear of PediaSure, he was rejecting.  After several bites of Cheerios, he cautiously fingered the cup.  My eyes widened, and Jack's therapist said, "Don't even look at him.  Don't say anything."  Jack pulls the cup to his lips and, thankfully, began to drink.

So ended one of the biggest scares of my week.  I'm sure my sigh was audible for miles.

Needless to say, we're not trying the PediaSure again.  I'm not risking another close call with dehydration for it.  I implore the makers of PediaSure to come up with something flavorless, because some kids just won't take anything outside of their norm.

Friday, June 24, 2011

Down Came the Rain (Part Four)

Looking for parts one, two, or three?  Click on the numbers...

Monday - 9:30 AM

Rushing out to the car, Jack continues to scream.  The tape is more than he can bear.  I ask my mother-in-law to please sit in the backseat with him to help keep him from clawing the tape off.  He needs to keep it on, because his arm was bleeding badly.  That woman did one heck of a job on him.

He continues to cry as I strap him into his car seat.  It's a short ride to the children's hospital, thank goodness, and my baby boy is done.  My heart aches for him and the terror apparent in his face.  We pay for our parking and head across the street to the hospital.

After parking, we head inside the hospital.  This isn't the first time Jack has been here, and it's certainly not my first time.  Jack had to get stitches when he was 17 months old.  I frequented this hospital as a child with reoccurring ear problems.  They are some of the best in the state.  The hospital is calm, clean, and warm with decorations to make children feel at ease.  I feel at ease here.  I trust them with my child.

As the woman at the previous lab was less than helpful, we ask for directions to the lab.  The woman at the information desk points us in the right direction.  I take note of where radiology is located, as I know that we'll be back soon for Jack's upper GI series.

We head to the lab, and find the waiting room to be smaller than the master bathroom in our house.  It is filled with people.  I know this will be difficult, but I try not to convey that awareness to Jack.  He'll come of it himself soon enough.

After a few minutes in the waiting room, Jack gets antsy.  I can tell he's getting agitated.  They haven't even called me up to give my insurance information, so I feel inclined to stick around.  Finally, my mother-in-law assures me that she'll call for me when they're ready.  I take Jack out into the hallway for some peace.

We walk up to a window that looks out into small courtyard.  I feel inclined to stay inside, but both Jack and I seem to want the openness of the outdoors.  Instead, we stand and look longingly outside.  I lift him up into my arms and begin to sway him side-to-side, giving him the movement I know his system craves.  In response, he lays his cheek on my shoulder, always staring out the window, and relaxes against my chest.  I rub his back, and with the pressure he relaxes further.  He can't see me, but the tears slowly start to fall from my eyes.  I fight them in vain.  I wish it were easier for him.

He is in sensory heaven now.  Staring out the window, swaying side-to-side, and deep pressure on his back are surely making him feel so much better.  We stand there for about 30 to 40 minutes together.  Jack remains so still that I think he's gone to sleep, but he is awake; he just stares out the window.  I almost don't dare breathe, so as not to interrupt his peace.  I know it'll be interrupted again soon enough.

As we stand there, I can't help but feel a bit sorry for myself.  I feel sorry for Jack, too.  He shouldn't have to go through this.  All of this.  The therapy, the evaluations, the testing, the vomiting, the sensory meltdowns, all of it.  No child should have to go through this.

Occasionally, I see children in wheelchairs or wagons being wheeled down the hall, attached to tubes, IVs, and all manner of medical devices.  These children are not just sick or disabled; they are fighting for their lives.  I feel ashamed at my own self-pity as I see these children.  My child is not dying, so what right have I to feel sorry for my lot in life?

Ultimately, I feel for him.  He is everything to me; he is my heart.  As his little cheek rests on my shoulder, a few more tears fall.  He should be home playing.  Instead, he's here, doing more and working harder than any 2-year old should.  I can't help but ache at that thought.

Eventually, my mother-in-law's face appears from behind the lab door.  The receptionist wants to know if I want them to run the blood work a certain way, which will make it covered almost 100%, or to run it out-of-network.  It seems like a no-brainer to me, until she mentions that to run it in-network, it'll take a while to get the paperwork together, thus prolonging our wait.  My mother-in-law looks at me imploringly, and I make the painful decision.  Yes, it will take a bit longer to wait, but in light of all that Jack requires, we need this run at the network level.  We'll wait, but I request that they alert me if it's taking an excessive amount of time.  I allow Jack to wander in the waiting room for a few minutes, and then we head back into the hallway to, once again, stare out the window and sway side-to-side.

About 20 minutes later, my mother-in-law's face appears again.  They are ready.

I hold my little guy in my arms and try to feel nothing but positive energy.  I hope he picks up on it.  It will all be okay, my love.  Everything will be okay.

We get into a room and I tell the phlebotomist that Jack is autistic.  She gets it.  She speaks softly and doesn't approach Jack immediately, and for that, I am grateful.  She asks if she'll need assistance to hold him down.  Both me and my mother-in-law chime in with a resounding Yes.  It'll be easier this way.  For a kid with low muscle tone and motor planning issues, Jack is remarkably strong when he needs to be.

We lay Jack down on a table and she tells me to lay across his body and put my face directly in front of his.  The assistant holds Jack's arm still as the phlebotomist goes to work.  She works quickly, and I am astonished at the amount of blood they take from my little boy.  It is several vials, more than I have ever had drawn at one time.  Jack sobs.  My throat burns as I try to hold back my own crying.  I know I must succeed at this and I do; he needs me to stay strong.  He needs to not see me cry.  His pain is unbearable to me; it makes my heart hurt.

It's over quickly.  The bandage is in place.  While Jack doesn't like it, he doesn't try to remove it.  Instead, he flexes his arm over and over until we take it off.  I hold my baby to chest and absorb the remaining tears.  It's over, I keep repeating, it's over, sweet baby.

We leave and head for the sanctuary of the car.  The drive home is uneventful.  Jack munches away at the Cheerios that I did not bring into the hospital with us because I foolishly thought this would not take long.  I know this will not be our last trip to the hospital; we'll be back in about a week for the upper GI series, which I know will be a bit more traumatic.  Under my sunglasses, I shed a few more tears.

I cry for what my little boy has to go through at his age.  I cry for the possibility that he is facing yet another diagnosis.  I cry that we're all facing another diagnosis.

It seems overwhelming at times.  What can life throw my way next?  Can life stop using my little boy as a pawn?  I want normalcy for him and I pray that will be the result of all of this testing and therapy.  I calmly wipe the tears away and keep on driving.  I have to keep going.  That's all we can do.

Thursday, June 23, 2011

Down Came the Rain (Part Three)

Looking for Parts One or Two?  Click on the numbers...

Monday - 9:15 AM

Precariously balancing Jack, who is thrilled to be sporting a new Tow Mater sticker from Dr. GI, in one arm and paperwork in the other, we head into the lab.  It reminds me of the labs that my former employer used for our annual blood work.  The waiting room is very sterile and obviously not intended to accommodate children.  This surprises me, given that the medical building we're in is across the street from a children's hospital.

The receptionist gives us a cold welcome.  It's clear that she was not looking forward to interacting with anyone this morning.  I can tell that this is going to be pleasant.  I hand her the wrong medical order at first; I have several and they all look the same, plus I'm still balancing Jack in one arm.  She snaps at me that I haven't handed her what she needed, so I try again.  I get it right this time.  After managing to fill out the little bit of paperwork that she requires and handing her our well-used insurance card, I head towards the chairs in hopes of giving my back a break.

Seconds later, she barks at me, asking if Dr. GI wanted a specific panel or not, because he apparently "X"ed and circled a box, but only "X"ed the others.  My work in the veterinary and medical device fields suddenly fails me, as I don't recognize the function of the panel she barks out.  Hesitating, I tell her that I don't know and that I guess we'll have to call.  She rolls her eyes as I give her the number.  After an attitude-filled conversation with Dr. GI's office, it seems like we're set.  I thank God that she's the receptionist and not the phlebotomist.

I'm wrong.  She's doing the blood draw.  Her attitude concerns me immediately, but I try to remain calm about it.  I know that Jack will pick up on tension, whether it comes from me or her.  I need to keep cool for his sake.  She sits us in a chair.  I mention that Jack's autistic, but it seems to go right through her.  She coldly asks if I think we should go to the children's hospital instead.  I ask why, and she says that they'll strap him down for the blood draw.  No, my heart screams, absolutely not!  I suggest that she try if she thinks she can.  I do as she asks and hold Jack's arm for dear life.  I'm subconsciously willing him to please stay still.  I feel his anxiety rising.

With a "dangit!" from her mouth, I look down and see that within seconds Jack has moved while she was sticking him and it has blown his vein.  My mother-in-law starts asking her where at the children's hospital we need to go.  The receptionist/phlebotomist is less than helpful.  She places a wadded up gauze pad in the crook of Jack's arm and secures it with medical tape.  The stickiness of the tape is more than Jack can bear.  He wails and claws at his arm.  It was bleeding badly, so I implore him to leave it be.  I know he hates the stickiness.  It is eating at him; I can see it.  We're going into sensory meltdown, but it's better than Jack's arm continuing to bleed.  The tears stream from his cheeks and my eyes burn with trying to hold mine back.  I wish I could take this from him, I really do.

We snatch our paperwork from the woman and head for the door, on to our next stop - the children's hospital.

Stay tuned for the conclusion of this series tomorrow...

Wednesday, June 22, 2011

Down Came the Rain (Part Two)

Looking for Part One?  Click here.

Monday - 8:45 AM

Dr. GI knocks on the door and walks in.  He strikes me as exactly what I'd imagine a pediatric GI to look like, complete with a bow-tie and glasses.  He is soft spoken and does not intrude on Jack's personal space until necessary to do so.  I like him immediately and see that this specialist is exactly what our speech therapist billed him to be.

He begins by asking more questions.  Questions about Jack's history, but luckily he spares me from recounting the painful details of his development.  He knows that Jack is autistic and, obviously, has many developmental delays.  He asks question after question about possible allergic conditions.  He notes that every last one of us in the Reinventing Mommy household have eczema.

Then comes the part Jack hates...the exam.  Dr. GI makes it as painless as can be.  He feels Jack's abdomen and listens to his heart.  There are some tears on Jack's part, but it's over as soon as it began.  Jack, thankfully, calms quickly in my arms.  He'll need his patience for later.

Dr. GI tells us his findings.  Essentially, he doesn't know anything yet, but more testing will be required. My heart sinks, as it seems as though Jack's life has been filled recently with endless testing.  Each time, I think it is more painful for me than for him.  I hate to have to see my baby go through this.

The doctor mentions various possibilities, some metabolic, some autoimmune, some are something else entirely.  The names fly through my head and several of the possibilities feel like a slam to my chest.  I try to put these thoughts out of my mind; it's more important that I focus on what are the next steps.

Luckily, the testing, while not fun, will not be as invasive as it could be.  We'll begin with blood work immediately to test for food allergies and rule out (or confirm) several of the possibilities.  They'll also run a metabolic panel to ensure that Jack's organ systems are all functioning correctly, just in case.  We'll also be sent for an upper GI series at the hospital.  This will help rule out the possibility of deformities in Jack's upper GI tract, including his esophagus.

We're also to try Prevacid to reduce possibility of damage to Jack's esophagus by his constant vomiting.  There is always the possibility that this will help in and of itself.  Dr. GI says that several of the conditions he mentioned can be helped by the Prevacid, so it's a good thing to start.  Jack is also to start drinking 1 cup of PediaSure (or some other nutritional drink for kids) until the vomiting gets straightened out.  We're also to keep a log of all vomiting incidents and then come back for a follow-up in about 5 weeks.  He hands us an order for the blood work and we're on our way.

We're told that there is a lab in the next building that does a good job with the panels, so we can head over there immediately.  After setting our next appointment, we head off to the lab for the next part of our morning.

Stay tuned for part three tomorrow...

Tuesday, June 21, 2011

Down Came the Rain (Part One)

Monday - 8:00 AM

After 2 weeks of getting everything squared away, we're in the waiting room of the pediatric gastroenterologist for Jack's appointment.  I'm hopeful that we'll get some answers.  Hopefully, we won't get more questions.

I'm surprised at the activity in this waiting room.  Jack is one of about 20 patients, with their respective families, biding their time until their names are called.  Of course, "biding his time" isn't a concept that Jack, or any 2-year old does well.  The pacing begins.  He's pacing around the room, tripping on one child's wheelchair every time he walks past.  Thump!  He's fallen again.  This time, he sees a Chik-Fil-A cup and reaches for the straw.  I intercept him before he takes a swig and make him sign "sorry".  Ironically, Jack won't touch foods that he is allowed to eat.  I think the food being forbidden is more of an allure.

They call our name for me to come pay our co-pay.  I hand Jack off to his Grandma and hurry over to fork over the first of several co-pays of the day.  The screams begin and Grandma has brought Jack over to see me.  Kneeling on the floor at his level, I try to calm him down.  I need to calm him down.  A meltdown is an ominous sign for this morning, so I want to keep this from escalating.  He calms nicely, but I end up having to sign my receipt for the co-pay without looking.  Hopefully that signature resembles something like my name.  I really could care less if it does.

Jack then spies a small play area in the waiting room and heads over.  I follow to help facilitate interaction, which I know really won't happen.  He finds a toy mailbox and proceeds to open and close it's door.  The one little girl in the play area gravitates toward him.  Jack's a flirt without even interacting. The girl starts instructing Jack on what to do, in the way that little girls tend to do, but he doesn't even know she's there.  I think to myself that he's gonna break a lot of hearts one day with this attitude.

Across the room, I hear Jack's name.  It's his given name, so I'm taken aback, as I always am, by the difference.  I scoop him up, and off we go.

Monday - 8:30 AM

A nice nurse who looks about my age leads us back to an exam room and instructs me to undress Jack down to his diaper.  She then leads me to a scale that is so much nicer than the one at Jack's primary pediatrician.  It's padded and probably long enough for me to sit on.  The nurse says that she's aware that Jack's autistic and will it bother him to have his diaper removed.  Oh no, I assure her, he's just fine running around with no clothes on.  You should see him before bathtime.

We get Jack's weight and height uneventfully and put his diaper back on.  I guess that they think that Jack's diaper might throw off his weight on the scale?  She takes us back to the exam room, which I note is called the "Bear" room, and asks a few more questions.  How long has this been going on?  What precipitates his vomiting?  What comes up?  What comes out the other end? 

I'll spare you the details.

She then tells me that Dr. GI (not his real name, obviously) will be in shortly.  Jack's getting restless and starts pacing again.  He then decides to entertain himself, and give my back a workout, by climbing up and down off of the doctor's revolving chair.  He also lays down on the ground a few times, surely craving the pressure on his skin like his ABA therapist has suggested.  I've given up trying to get him to not do this in doctor's offices; he hasn't gotten sick, yet.

A short while later, I hear a knock on the door and in walks Dr. GI...

Stay tuned tomorrow for part two...

Monday, June 20, 2011

A Dead End did we get here?
I know I've posted before about how I'm happy with my family of 3.  In reality, it's what's best for us, especially right now.  Jack needs my full focus in order to grow and develop.  In order to get  social interaction and communication from him, we have to invest so much time into Floortime and reinforcing other therapies at home.  Another child would, in fact, get in the way of that.

There are many reasons why having another child wouldn't be a great idea.  There's always the possibility that another child might also have autism.  The odds do increase if you already have one child diagnosed.  The resources, namely me and Brian, would be stretched very thin if we had two children on the spectrum. I know families do it, but I'm not sure we're one that could.

Also, it would be selfish of me to bring a child into the world knowing that if they were NT, the burden of caring for Jack would one day fall on him or her.  I've had people tell me that is bull-crap and I shouldn't feel that way, but that child would have just as much of a right to live his or her life without that burden.  He or she would also grow up with a sibling that would potentially occupy most of his/her parents' time.

That doesn't mean I don't think about it.  I can't say that this was what I imagined for my life.  When I left my job when Jack was about 4 months old, I did so because he had feeding issues that I believed required my focus.  I never imagined that it was so much more than just that.  I imagined that I would stay out of work for a few years and that we would add to our family in that time-period.  I thought we would have already had another child by now.

Autism changes everything.

In some ways, I feel like I've failed.  I wanted to be a mother again.  That's probably not going to happen.  It probably shouldn't happen.  When I was in college, we used to talk about "increasing your genetic fitness" by passing on your genes to children.  Not to do so was to go against biology, to become a biological "dead end".  Sometimes that's what I feel like I've come to...a dead end.

I try to look at the positives.  Maybe the dead end isn't just a vacant lot or overgrowth.  Perhaps there is a park or a coffee shop or something else unexpected, but nice.  If you haven't read the "Welcome to Holland" essay by Emily Perl Kingsley, I'd suggest you do it.  It's how I try to look at things these days.

Maybe one day there will be more kiddos in the Reinventing Mommy house, or maybe there won't.  Maybe as time goes on, I'll see autism more as a detour in the journey and not a dead end.  Either way, it's where we are and it's reality, so I might as well settle in and search for the park.

Saturday, June 18, 2011

The Purpose of Communication

Jack's getting it.  He's really getting it!

If you think about it, if you didn't understand the social reason for communication, would you do it?  Probably not.  You might make noises because they feel good or relate to an interest, but you wouldn't feel the need to communicate with people.  Vocalizations might only serve as a means of self-stimulation.

Think of it this way - you see a bowl of your favorite ice cream.  It's sitting there, tempting you.  You see your Mom lurking around, so you ask if the ice cream is spoken for.  "Can I have that ice cream?"  Your Mom responds "yes" and you walk away happily.  You got what you wanted because you understood that you needed to ask someone for the ice cream.  You understood that you needed to communicate.

Imagine if you didn't understand that social aspect of communication.  You didn't understand that communication can lead to some result, potentially a desirable one.  You see the ice cream and want it, but it doesn't occur to you to ask.  Maybe, as is in Jack's case, it doesn't even occur to you to point to it or reach for it. You stare at it, because you want it.  You have no tools with which to get that ice cream.  The concept of getting assistance from someone else just doesn't occur to you.  You don't even understand that there is a word for "ice cream".  It's nothing more than a concrete visual image to you and you struggle to think abstractly about it.  You get increasingly frustrated, because you're not giving off enough social cues to alert someone to the fact that you need assistance.  You either give up ("There's no way I'll get that ice cream") or break into a meltdown ("I want that ice cream...why don't I have it yet!?!").

Welcome to the world of the autistic, non-verbal child.

The good news is that Jack is very slowly beginning to acquire the receptive language to understand what some words mean (a baseball cap is called a "hat") and that labeling or communicating those words results in something (I show Mom a hat and say "hat" and Mom smiles, takes it from me, and puts it on her head).  This is huge.  If he gets that good things happen when he communicates, the hope is that more communication will, eventually, follow.

The words are coming slowly.  Most of what we're getting is what Jack's therapists call "echolalia", which is a fancy-pants word for repeating what he hears.  However, we're getting little snippets of spontaneous words.  He once said "Mom" when he saw me at speech once.  He says "uh oh" any time something drops (or gets thrown on purpose...he's not totally clear on the meaning of it, but I'm not picky!).  He's saying "all done" (which sounds adorably like "daw done").  He said "hat" when he picked up the cap.  We're not getting these everyday, but we're getting them!  We're still getting the 2 signs that we acquired a few weeks ago ("more" and "all done").

He's still got a long, long way to go, but we're building the foundation!  His developmental pediatrician said it's not uncommon for children on the spectrum to lose language in the second year of life and to reacquire it around age 2 1/2.  At the rate Jack's going, he may be right!  I try not to set goals for myself like that, and the therapists warn me against doing so, but my hope is that the words will keep coming.

I'll certainly keep fighting for them.

Friday, June 17, 2011

Savant Skills

Another public service announcement...

I'm going to reiterate this as many times as I have to, but most people with ASDs don't have savant skills.

What are savant skills?  Think incredible talent in a particular, focused area.  That's a savant skill.

Maybe it's watching Rain Man one too many times, but the public as a whole seems to think that every autistic person has a savant skill.  People ask me all the time what Jack's savant skill is.  Is he a music prodigy?  Can he do calculus problems?  Has he cured cancer?

No, No, and No.  Jack's still working on feeding himself and speaking.

I think people get confused at times between what's a savant skill and what is a fixation or obsession.  If Jack could talk, I'm certain he could tell you everything there is to know about Thomas the Tank Engine.  He obsesses over it.  The other morning, I had laid out a Thomas t-shirt for Jack to wear and he literally would not sit still until he was wearing it.  He has a metal lunch box with Thomas on it that he stares at, opening and closing it, for quite a while.

The hottest savant on TV.  No blog post is
complete without a picture of Hugh Laurie.
Would I consider him a "train savant"?  Nope.  It's a fixation, an obsession.  A lot of people on the spectrum do have fixations, obsessions, and narrow interests.  That's how they know so much about a particular subject; they ignore everything else.

I'll say this again, if you've met one child with autism, you've met one child with autism.  They're all unique.  Not every kid on the spectrum has any one particular symptom.  Some, if not most, kids with autism have difficulty looking people in the eye.  Jack actually avoids your gaze if you try to get him to look you in the eye.  However, there are some kids on the spectrum with great eye contact.  Other kids have extreme sensory problems, some, like Jack, have moderate difficulties with sensory stimuli, while others have little to no sensory dysfunction.  Likewise, even if a handful of autistic people have savant skills, not all of them do.  In fact, most don't.

Instead of looking for Superman in our kids, we should look at the things that most autistic people do that are very special.  They are the most genuine people you'll ever meet.  Being such concrete thinkers, they don't think to lie.  It just doesn't occur to them.  They have passions in particular areas of interest that are beyond anything that you or I could imagine.  They will throw themselves head-on into their interests.  They are incredible visual thinkers, lending themselves to success in many fields that require such an ability.

Jack won't be counting cards anytime soon.  Will he one day be pursuing his interests by working on antique railroads or being an engineer designing the next generation of locomotives?  Maybe.  We'll see...just sit back and enjoy the ride!

Thursday, June 16, 2011

Happy Birthday! Here's a Milestone.

I know I promised you chocolate cake, but this
isn't it.  I'm unfortunately not that talented.
This time, the milestone is all mine.  This is my 100th blog post!  I've tried blogging in the past and it never stuck, but look at me now!

Today's post is all about the other man in my life.  You'd think that Jack occupies all of my time, which is close to being true, but the other, and no less important, man in this house is Brian.  Today is his 28th birthday.

Now, the thing that might shock some of you, even those who know me well, is that Brian is actually a year younger than me.  Who knew, right?  I think I come off as being the younger one, especially since Brian likes to play up the 27-going-on-68 persona.  I find that particularly funny, because Brian has tendencies that seem more akin to a 10-year old, but all I hear from other people is how responsible and mature he is.  If you could be a fly on the wall in our house...

Happy Birthday to the best Dad
in the whole world.
Mature or not, he is a year older.  Birthdays take on new meaning in our house these days.  Restaurants are far too difficult to visit with Jack, so we tend to just order in for birthdays.  I feel bad that we are home-bound for these events, but I also feel bad for both Jack and the other patrons when he melts down at a restaurant.  Even though people have said, "That's just a 2-year old for you", most 2-year olds don't pace for 40 minutes straight and scream at any attempts to put them in a high-chair.

I try to really do up birthdays for everyone else in my house, because mine universally suck.  Someone always forgets that it's my birthday.  I've also been dumped on my birthday, in a wreck on my birthday, and been dealing with an impending autism diagnosis for my son on my birthday.  Jack was actually due the day before my birthday, but since he was 3 weeks early, he misses the mayhem that ensues on that annual ominous day.

This year, I'm trying to show Brian how special he is to us all.  He's the bread-winner that allows me to spend my days trying to help Jack heal and grow rather than focus on holding down a job.  He works so hard to provide for us and he does a fantastic job.  Parenting in and of itself, let alone parenting a special needs child, is not something that is a one-person job.  I couldn't do it all without him.

So, Happy Birthday to you, Brian.  You were 16 when we started dating, and nearly 12 years later, look where we are.  I couldn't have imagined our lives being the way they are now when we started dating 12 years ago, but given all that we've gone through over the past year, there is no one I'd rather have at my side.  Enjoy your day, sweetheart.

Wednesday, June 15, 2011

The House Next Door

Home sweet home, if you're a panther/gorilla/hobo.
Do you have neighbors who just don't give a crap about their property?  What if you didn't have neighbors at all?

Well, that's the problem we've had for the past year.  The house has been vacant for over a year.  This has led to a general look of disrepair about the place and, as you imagine, annoyance from the neighbors as well as us.

They've had no "For Sale" sign in front of their house, so we were beginning to think it was hopeless.  However, some of our neighbors, who apparently have way too much time on their hands, have been able to determine that the house has actually been sold.  I can only assume that means it was auctioned off, since we never saw a "For Sale" sign or anyone actually showing the home.

Holy crap!  Run for your lives!
While I'm glad the house sold, I'm hoping that the new owner shows an actual interest in the appearance of the home.  Here's a short synopsis of the overall condition of the house.

  1. There is a hornet's nest growing out of the deck light by their back door.  I'm not just talking about a little nest, I'm talking about one large enough to see from our house.  It has emerged as an amorphous mass coming from the light fixture.  Seeing as I have an allergy to all things stinging, this freaks me out.  Luckily, the neighbors on the other side of this house noticed it first and sprayed it to keep their kids from being hornet bait.
  2. Before the previous occupants moved out, they ripped the grass out of the backyard and replaced it all with pine straw.  Yes, you heard me right, they had a pine straw backyard.  I say "had" because it's since started to resemble something out of Jumanji.  There are weeds that are larger than me back there.  Jack would literally disappear if he stepped foot in their backyard.  I imagine there are probably panthers and gorillas lurking back there.
  3. At one point last year, someone (it wasn't us) complained about the Jumanji-like state of their backyard.  The city sent people out with an industrial lawn mower (like what you'd see cutting the medians on the interstate) and plowed the jungle down.  It regrew (big surprise) just as quickly.  It regenerates and cannot be stopped.  The fun thing about the city's visit is that they literally plowed down part of their fence to get back there, so part of the front of the fence is ripped off.  Attractive and guaranteed to fetch a buyer.
  4. Obviously, no one's cutting the front yard, either.  So, poor Brian and the neighbors on the other side end up cutting it.  Of course, Brian gets the larger portion (the bulk of their front yard borders ours).  If we don't cut it, or if we doesn't seem to matter, weeds seem to migrate into our yard.  Our yard, therefore, looks like hell.
  5. Not that we can see it from the street, but I can only imagine what the interior looks like.  It's probably infested with hornets/panthers/gorillas/hobos.
Good luck to you, new neighbors of ours.  I hope you don't mind hearing the screams of a 2-year old's sensory meltdowns, because you will.  I also hope you have access to industrial-strength hornet killer, because you're gonna need it.

Tuesday, June 14, 2011

Excuse Me, Ma'am...Your Age is Showing

I'm feeling acutely aware of the fact that I'm getting older and not invincible.

My right hand and wrist have been killing me for about 3 weeks now.  I've put it off, hoping that I'd just tweaked it and the pain would go away, but I might actually have to see someone about this.

The problem is, when to fit it in?  If it weren't that we had the week from hell approaching, I might could try to squeeze in a visit to the doctor.  Alas, I can't.

It doesn't help that Jack really hates walking.  I end up carrying him almost everywhere, so I'm sure the damage to my back and arms will one day catch up to me.  It's one thing to carry an infant everywhere, it's another when it's your 27-month old son.

That and the few gray hairs I'm sporting, I'm looking and feeling a bit older than I used to.  Admittedly, parenthood ages you.  Parenting a special needs child is extreme parenting, so it ages you to the extreme.

Tonight, as I sit watching a PBS special on scenic railroads (I kid you not) and I contemplate going to bed at 9:45 PM, I wonder where it all went.  What happened to the days where my weekends were filled with watching Law and Order SVU, playing the Law and Order Drinking Game (you take a shot every time you hear the iconic "dun-dun"...don't judge), and staying up until 1 AM?

Instead I've become...a Mom.  I get up at 8 AM at the latest.  I clip coupons and plan dinners.  I keep an extensive calendar of doctor's appointments, therapy, and everything in between.  I listen to Thomas the Tank Engine instead of anything Top 40.  My hair looks stringy.

However, why is looking (or acting) like a Mom such a bad thing?  I don't have hangovers anymore.  I have an excuse for weighing a few pounds more than I should ("I'm a Mom!").  I don't swear as much as I used to (swearing and kids don't mix).  I take pleasure in the little things ("He didn't vomit!  Woo hoo!").  Despite the fact that I feel older and look older, I probably have healthier habits now than I did before.

Wearing the Mom badge with pride, people.  The gray hairs?  I'll just keep plucking them until there are so many that plucking would render me bald.

Monday, June 13, 2011

It's Not You...It's Me. Okay, It's You.

Take it from the guru, George Costanza.
Confessions of a Mommy...I don't think that it's working out with one of our therapists.  I won't name names and I won't even say which therapist (ST/OT/ABA), because I'm not a fan of singling people out.  After all, some people just don't see eye-to-eye...and that's okay.  If we always meshed well with the first person we meet, I would be married to my very first boyfriend in high school, and it wouldn't be pretty.  He was a crier.

This therapist has been a little flaky, but hey, aren't we all at times?  There are other things that make me question whether or not this is for the best.

First and foremost, we have different treatment philosophies.  Being a big Floortime proponent, I particularly subscribe to the following ideas:

  1. You should follow a child's natural lead.  Interactions based on a child's interests are highly motivating and, thus, create the best opportunities for learning.
  2. You should always allow a child to be in control of their own body.  For special needs children, who so often feel as though they cannot make their bodies work the way they wish, this is especially important.
  3. When you are trying to build engagement and interaction with a child lacking in those skills, like kids with autism are, you should never ignore them.  These children often need assistance working through meltdowns and ignoring them sends the message that you aren't there when they need you.
  4. Learning should not be a rote and repetitive activity.  Learning scripts and memorizing social behaviors does nothing to foster a genuine love of social interaction in a child.
  5. Special needs children are capable of one day achieving higher levels of abstract thought.  Empathy, justice, and foresight are all within their grasp, if we have the strength to help them achieve that level.  It is those of us who believe that these children have limits who end up limiting them.
This therapist doesn't quite see things this way.  She's big on repetition and rote learning.  Now, while I agree that practice makes perfect, you have to give children opportunities to practice concepts in natural settings rather than repeating an action sequence over and over again.

Yes, sensory meltdowns suck even in Tom Cruise's
presence.  Maybe even more so.
Second, I question just how much she knows about kids on the spectrum.  She actually asked me this week if a certain noise Jack was making was verbal stimming.  I wanted to say, "You're the expert; you tell me!"  She also wants me to physically restrain him to get him to interact in Gymboree.  I can see that going really well.

Third, she sees things that aren't there.  Jack was melting down and wigging out and, as tends to be his way, letting his legs buckle in an attempt to throw himself to the ground.  I was supporting all of his weight by holding him under his armpits when she exclaimed "He's jumping!"  I pointed out that he was flexing and bending his legs in a tantrum and I was supporting all of his weight and she said, "No, he's jumping."  Okay, loyal reader, have you ever jumped while being held?  Nope, you haven't.  As I mentioned in a previous post, Jack doesn't jump yet.  He doesn't even hold onto something and bounce.  So, saying he jumps is inaccurate and only serves to make it so that she's not treating Jack's actual deficits.

Now, I think this particular therapist has such a thing for jumping because she really wants Jack to use a trampoline to self-regulate.  We've spoken to his OT about it and she's a no-go on the idea because he's physically not ready for that.  We have to support his weight and physically move him up and down on a trampoline right now, so self-regulation on it is out.

She then suggests that we get PT if I think he's not jumping.  Well, we've discussed that with some of Jack's team, and they agree that Jack, in all likelihood, isn't jumping due to low muscle tone and motor planning deficits, which can both be addressed in OT.  If the OT at some point feels differently, we'll get a PT evaluation, but for now we'll avoid adding yet another therapy to the already jam-packed schedule.

Believe me, if my kid had savant skills and could
count cards, we'd be in Vegas already.
Fourth, I think she got some of her autism training from Rain Man.  A Dustin Hoffman fan does not an autism expert make.  Of course, I'm referring to savant skills.  Everyone seems to think, because of Rain Man, that all people with autism have a savant skill, or special ability.  You'll also hear these referred to as "splinter skills", and while some people on the spectrum have them, most don't.

In session this week, Jack's looking at a book.  He's making random noises, as he tends to do.  The book is an alphabet book and Jack's therapist chimes in and says, "He just said 'Q'!"  Q?!?  Okay, now Jack has randomly made noises that sound like "G", "D" and "B", but never "Q".  Do typical 2-year olds make "Q" sounds?  I'm guessing no.  She shocks me further by saying, "He knows all the letters!"  Well, actually, at the most he knows "Q".  I'm rooting Jack on, too, but I'm also trying to be realistic.  He's not a poster child for Your Baby Can Read.  I mention that it's funny that he would know his letters but be non-verbal, and she says, "It's common.  That's the spectrum; they all have these abilities."  Oh dear.

Now, here's where we stand right now...while Brian and I could do without her, the therapy she provides isn't harming Jack (yet).  While he's a more distraught, disconnected, and stimmy during sessions with her than with his other therapists, it doesn't seem to be doing harm.  He's not really gained anything from it, but he's not regressing for it.  We also have a current therapy that will compensate for the loss of this one, and I believe it's the reason we're seeing progress in this area.  Cost really isn't a factor because this therapy costs next to nothing due to coverage we have.  So, we're trying to decide, keep the therapy because it's not gonna hurt anything (right now) or ditch it and regain an hour to our therapy week (and hopefully a bit of sanity and another hour for Jack to be a kid).

Decisions, decisions...

Sunday, June 12, 2011

The Acorn Doesn't Fall Far From the Tree

We may all be slightly "nutty".  Catch my joke?  No...well, don't feel bad.  I'm a cheesier than a bag of Cheetos.

I run across the "acorn" statement a lot when reading about autism.  After all, two dogs don't typically have cat offspring.  Now, I am a believer in a genetic component to autism, but is there truth to the thought that the parents of autistic children may have autistic tendencies?

In my opinion, yes.  At least, speaking for myself, I'd say so.  Remember, at it's core, autism spectrum disorders are characterized by deficits in social development and communication, and tend to include aspects of repetitive behaviors and/or rituals.  Many on the spectrum have sensory issues.  Now, I'm not saying that the parents, myself included, are autistic, but who really knows?  The testing and awareness when we were kids isn't what it is now.

That being said, I think that many parents can somewhat sympathize with their kids because they see some of the tendencies in themselves.  For me, in particular, I can sympathize with Jack in the following ways:

  • I was horridly socially awkward as a child.  I was outcast as a "nerd" at an early age.  I understand being socially awkward and just not "getting it", because I didn't "get it".  Even now, I actually shake (literally) when I have to talk to strangers or when I'm talking in front of a group.
  • Like Jack, I need the weight of something to calm me down.  Whether it's Mason laying on my lap or a blanket wrapped around me (which I never need for warmth, always pressure), I crave pressure, too.
  • I walked on my tip-toes as a kid.  I did it more, and for longer, than Jack.  Jack does it often; I did it constantly.  It was only my fear of my 1st Grade teacher's wrath that broke me of this.
  • Looking people in the eye has always been very, very uncomfortable for me.  I actually trained myself, because I knew it was expected of me, to look people in the eye.  It still makes me feel awful, though.  It's torture for me and my stomach goes in knots, but I do it because it's what's expected.
  • I have rituals that I have to follow before I can sleep.  Jack has to be checked.  I have to check every exterior door myself, even if I see Brian check them.  I have to close the baby gates everywhere.  There's a certain sense of "order" about the house that I require before going to sleep.
  • I'm nowhere close to Jack, but I can't eat certain "lumpy" foods.  Ice cream, yogurt, mashed potatoes, and pudding all have to be perfectly smooth for me, with few exceptions.  I don't gag or throw up on them like Jack does, but a lumpy texture to these foods is more than I can overcome.  I just can't eat them.
  • I am much, much better expressing myself through writing than with verbal words.  I stumble verbally and get uncomfortable.  Seeing it visually helps me think.
  • This is the only area in which it's been medically proven that Jack and I share a sensory trait.  I have difficulty with auditory discrimination.  I'll explain...I cannot pick out individual sounds amidst all of the background noise.  I often have to have the noise I'm focusing on be much louder than the background noise.  I often have to ask people to repeat themselves because of this.  I've had an audiologist identify this problem with my auditory processing.  Jack doesn't have problems with discrimination, but he has problems with modulation (he hears every noise, no matter how unimportant, and it bothers him).  We both have problems with auditory processing.
Now, I'm not saying I'm autistic (I'm not a "self-diagnoser"), but I think that we all have quirks that make us unique.  Jack simply has these, plus many more, amped up to the next level.  His body can't make sense of it all.  His neurology makes it so.  Jack is missing the pieces that we have to help him cope with these everyday stressors.  He is still in learning the art of self-regulation that came easily to us all as young infants.

I would urge each of you to think about your quirks.  I'm sure you have some.  Some sensory issue bugs you.  Or, conversely, nothing bothers you and you need intense stimulus (more noise, more movement, spicy food, etc.) to give you the input you need.  When you see a kid like Jack melting down, remember your quirks.  Imagine if you didn't have the language or the coping skills to address your quirks.  How would you feel?  If the nails-on-the-chalkboard noise that bothers you so could only go away if you mention how annoying it is, how would you feel if you couldn't speak?  If it didn't occur to you to speak?  If you knew you wanted to walk away from it, but your motor planning skills were such that you couldn't make your body do what you wanted it to do?  You might melt down, too.

Examine your quirks.  I dare you.  You might see that you have a few, too.

Saturday, June 11, 2011

A Letter to my Son


There are so many things to say.  So many things.  You need to know how special you are.

I'm sorry that your childhood is filled with therapy and hard work.  I wish it came easy to you.  I wish that with a kiss I could make it all easier for you, but I know I can't.

I'm sorry that I'm not Wonder Woman.  I'm sorry that I can't help but feel sad or frustrated sometimes.  I feel sad or frustrated for you.  I'm sorry that sometimes I show my weakness.

I feel at times like I failed you.  Like I should have pushed earlier in your life when I just knew that something was wrong.  I should have trusted my instincts and not allowed other people to tell me that I was paranoid.

I don't ever want you to question that for one minute I regret being your Mom.  Sometimes when life closes a door, it opens a window.  This isn't what I imagined my life would be, but I wouldn't have it any other way.  You are far too special and I am blessed to be your Mom.

Don't ever let anyone tell you that you're not smart.  Or that you can't do something.  Don't even listen to them.  Your world is limitless.  You have so much, so very much, locked up in your mind.  I'm working hard, so are you, to unlock it all.  I know it's there, though.  I've seen it.  You'll show us all what you can do.  What you do will be all the greater because of what you will overcome to do it.  And you are going to do great things.

I will always be there to support you.  You never need to be afraid to ask.  I will always think you are the greatest person on Earth.  I couldn't love you more.

Most of all, I want you to know that I am so glad that you are my baby.  You are perfect just the way you are.  There is nothing "wrong" with you and never, ever let anyone convince you otherwise.  You have challenges that you may or may not fully overcome.  Either way, that's okay and I love you just as you are.  You are different and wonderfully unique and the people who matter will love you for and with all of your differences.  I couldn't be prouder of all that you accomplish.

Even if I never hear it in return, know that I love you.  I know that you love me, too.

Love always, Mommy

Friday, June 10, 2011

The "Normal" Kind of Vomiting

Jack is really starting to gather a collection of specialists, therapists, and doctors.  The newest one to add to the list is a pediatric gastroenterologist.

In a way, I guess it's good that we're adding the pediatric GI to the list.  I've read that a lot of kids on the spectrum have GI issues.  Jack had been diagnosed at 9 months with reflux, so we're no strangers to GI issues.

Jack's SLP mentioned to me the other day that she is concerned that not al of Jack's feeding issues are sensory.  Sure, some are, but the way he throws up is apparently "abnormal".

I didn't realize that there was a "normal" way to throw up.  Apparently, Jack's not doing that.  So, we've been referred to a pediatric gastroenterologist to make sure that there is nothing mechanically or anatomically wrong with Jack's GI tract, specifically his esophagus.  If there is something else going on, we need to address that before starting to intensify his feeding therapy to address his sensory issues and ritualistic eating behavior.

In some ways, this is a good and a bad thing.  First, it would be awesome if there was an easy, medical solution to his vomiting.  I know that it won't stop the gagging, sensory problems, or his picky-eating, but finding a solution to Jack's vomiting will save him from a lot of discomfort during feedings.  That can only serve to help make feeding therapy more successful.

On the other hand, I've been given a preview of what might lie ahead for Jack as they explore his GI issues.  He might need a swallow study, which involves going to the hospital.  He might need surgery to correct any issues they find, which honestly scares the crap out of me.  The thought of my baby needing surgery is so frightening.  Conversely, they might find that there is a problem, but there's not really anything that can be done about it other than giving it time.

We're in with a very highly recommended pediatric GI.  Our SLP has actually seen him for her own children.  She says he has wonderful bedside manner and will not put kids through any unnecessary testing.  She says that if he thinks further testing is necessary, she trusts his judgment 100%.

Our appointment's in a little less than 2 weeks.  We'll find out more then.  Fingers crossed that there is a solution (other than waiting) that doesn't involve too much for Jack.

Thursday, June 9, 2011

Elevator Music

The following is an actual conversation I had with United Healthcare.  Be advised, you may be less intelligent after reading it:

An annoying automated voice on a menu, several minutes of navigating said automated voice menus, and fifteen minutes of elevator music later...

"Medical claims department."

"I have a question about a claim."

"No problem.  For what service?"

"A speech evaluation."

"Okay, is this for autism?"

"Yes, my son has PDD-NOS."

"Okay, well, all autism claims go through behavioral health."

"But...this was processed as a medical claim.  It's not a behavioral health service."

"But your child has autism, so it is.  I'll transfer you to behavioral health."  Beep-beep.


Ten minutes and more horrid elevator music later...

"Behavioral health."

"I have a question about a claim."

"No problem.  For what service?"

"A speech evaluation.  My son has PDD-NOS."

"That's not a behavioral service.  Let me transfer you to medical claims..."

"I know it's not, but I was just transferred..."  Beep-beep.


Ten more minutes, horrid elevator music, and a distinct urge to either hurl myself out a window or turn to drinking later...

"Thank you for calling United Healthcare.  Goodbye."  Click.


Sometimes the only solution is perseverance...and wine.

Wednesday, June 8, 2011

Signing Time and Miracles

As you may remember, Jack's SLP suggested that Jack was ready to start learning sign language in earnest.  I happily came home, went on Amazon, and bought a baby sign language book to get me started.

I had also heard great things about Baby Signing Time, so I bought Jack a couple of the DVDs to give him something to watch that would reinforce the signing we're doing with him at home and therapy.  The movies were delivered right before I went out-of-town last week.

To my delight, my email inbox was lighting up all weekend long with Brian's emails saying that Jack was trying to imitate the DVDs.  We're not talking about imitating the signs on the videos (he still won't imitate actions), but he was imitating the words!  Yes, we're getting verbal imitation!

This is huge.  We haven't been getting imitation at all, until now.  He still doesn't do as well imitating people, but he'll repeat a little bit of what he hears in the Baby Signing Time DVDs.  Here are some of the things we've heard Jack repeat back to us (or the movie) in the past few days:

  • All Done!
  • Cheerios
  • Socks
  • Shoes
  • Hat
  • Airplane (which sounds adorably like "airpain")
  • Glug-Glug (what I say to him when he drinks)
I was psyched just with this!  It isn't spontaneous communication, but he's saying words!  Just when I thought that it couldn't get any better, Jack puts a hat on my head yesterday morning and says "hat" spontaneously!  Yes kids, that's what you'd call spontaneous communication!!!

It's a miracle.  A child who wasn't saying anything 6 weeks ago has started to imitate a handful of words over the course of a weekend.  He's saying one of them to actually label something!

I know many things have contributed to this breakthrough.  Brian and I have worked our butts off trying to do as much at-home therapy as we can.  Jack's therapists have believed in him every step of the way and believe that he has so much up in that little head of his that we all need to figure out how to unlock.  I think that the oral-motor therapy, in particular, is helping Jack.  I think that the Baby Signing Time DVDs have proven to be a powerful motivator for Jack and I'd recommend to anyone with children, NT or special needs, to give them a try.  The results we've seen since starting them have been dramatic.

I also have to thank the army of people who have been supportive of us and praying for us.

Of course, we have a long, long way to go.  Jack still has the sensory issues.  We still have a lot of problems with transitions.  Jack's got a long way to go in terms of communication.  We trying to explore some additional solutions to Jack's feeding issues.  Jack's social interaction is still lacking at best.  At worst, he still disconnects and stims.  However, the fact that I'm hearing my child say "airpain!" is huge to me.  It gives me hope that he's not silenced by autism.

Hopefully everyone will get to hear Jack's voice.  He's got a lot to say!

Tuesday, June 7, 2011

Zip-Loc Conspiracy

Because I can clearly get all of my
toiletries in something that fits a
hamburger patty.
A small, brief vent about flying is coming your way.  The story you're about to read is based on no industry knowledge and is probably nothing more than my own verbal bull$#*@.  So, don't sue me, Zip-Loc.

Enjoy my twisted sense of humor, because after throwing up 5 times on an overly-turbulent flight, sometimes all you can do is laugh.

I have determined that the TSA has to be in some kind of agreement with Zip-Loc.  Why, you may ask?  Because NO ONE buys quart-sized Zip-Loc bags for any real household use.  However, they now buy them for use with their carry-on luggage.

Seriously, have you ever bought quart-sized bags for home use?  No, of course you haven't.  The reason is that a quart-sized bag is way overkill for a sandwich.  The poor sandwich would be swimming in the bag.  It's also too small for any real storage use.  If you need to put something in the freezer, like meat, you always use a gallon-sized bag.  See, no real reason for quart sizes, right?

Wrong.  You see, Zip-Loc (and I base this on no actual knowledge whatsoever) got together with the TSA, who was designing their guidelines, and said "Hey, we have a crap-load of quart-sized bags that NEVER sell...what's say you make people carry liquids in them?  Don't let them use sandwich bags, either, even though they're smaller."

"Sorry sir, I had no idea that my liquids bag
needed to be quart-sized.  All I had were
bags to fit several sleeping bags or a body."
This whole process of pulling a baggie (of a size you NEVER buy) of liquids out in the security line seemed like a hassle to you and me and average Joe Consumer, so we reluctantly start checking our bags.  Why?  Because I like bringing a full-sized bottle of Pantene on a flight, dammit.

Zip-Loc was one ahead of us on this one, too.  They pulled the airlines into the gig, saying "If you charge money to check a bag, more people will carry-on luggage and, therefore, be required to buy our quart-sized bags!  If they don't, you get extra money for, essentially, carrying the same payload.  Winning!"  While they were at it, they got Pantene in on the act by showing them how profitable it would be for them to sell 2 oz. of shampoo for a buck, while selling 16 oz. of shampoo in a full-sized bottle for 3 bucks.  Winning for them, too.

It sounds like a bad joke...Delta, Pantene, and Zip-Loc walked into a boardroom...

Really, it is.  This totally made-up account of why I have to buy quart-sized bags once a year still touches on an interesting point.  Flying anywhere, especially out of ATL, has become a colossal pain in the butt.  You drag your luggage around everywhere because you don't want to pay out the wazoo to check it.  You go through security and have to whip your toiletries out for the world to see (You use Pantene, too?).  If you're lucky, you get to go through one of those scanners so that some TSA dude can see you naked with your face blurred out...enjoy perverts.  Your Grandma gets a pat-down, because Lord knows she looks dangerous.

Whatever happened to flying the "Friendly Skies"?
After that, you get to your gate where the gate attendant informs you that a) some people will have to gate-check bags due to a lack of overhead bin space, b) they've overbooked the friggin' flight and will give you money (cha-ching!) to not take this one, or c) a pigeon is meandering around on the tarmac and the flight is delayed for 17 hours.

Don't get me started on Delta's "Sky Priority" lane.  Sure, it's good if you're a first-class traveler that wishes to by-pass us peasants in the "General Boarding" line, but when they're only boarding first-class, they still make them use the "Sky Priority" lane.  Is there a point?  The "General Boarding" lane is empty at that time, so they don't risk touching the peasants.

Then, you get on the plane.  It just so happens that the person next to you neglected to either bathe or use deodorant that day.  Stellar.  As you put your Sea Bands on, that same person asks, "Do you get motion sick?" to which you reluctantly answer "Yes."  That person then starts looking around for a new place to sit (score!).  They then show the flight safety video with Delta's version of flight attendant porn ("Smoking is not allowed on any Delta flight"...said by a sultry woman with bright red lipstick waving her finger at the camera).  Good...I feel safe now.

Wrong.  As your flight takes off, it feels like the MD-88 you're riding on will break apart at any second.  I'm amazed that the things can fly, really.  You get to an altitude where they start doing beverage service and, for some odd reason, it's the coolest thing EVER!  I get a free (included with my $150 one-way price ticket) beverage and some cookies that taste like cinnamon cardboard.  10 seconds later, a flight attendant comes to collect it all from you because the plane's starting it's approach.  "Can I keep my cookies?  No?  Of course not."

After descending for what feels like eternity, you land and, again, feel as though the plane will break apart.  As soon as the fasten seatbelt sign turns off everyone, including Mr. No Shower, stands up, regardless of the fact that you won't be moving for another 15 minutes.  Everyone whips out their phones and pulls their bags out of the overhead bin, 3 of which hit you in the friggin' head.  That's because no one checks bags anymore because it costs about 1/6 of the cost of your round-trip ticket to do so.

If you're lucky enough to get your bag from baggage claim, you're golden and can go away from all of this craziness.  Anyone else think that airlines are getting a bit redonkulous?

Me too.

Saturday, June 4, 2011

10 Things You Should Never Say to the Mom of a Special Needs Kid

Don't mess with Mama Bear's cubs.
As some of you are aware, there is an epidemic of verbal diarrhea among members of the general public.  It can be characterized primarily by a complete lack of inhibition and the rapid emesis of anything and everything that comes to mind, spewed forth in verbal form.  Some people just have big mouths.

To help cure this affliction, I have come up with a list of things that no one in their right mind should ever say to the parent of a special needs child.  In reality, since it's hard to tell which children have special needs and which don't based on appearance alone, maybe no one should say these things to anyone.  Period.
  1. Your kid's not potty trained, yet?  My kid was potty trained from birth.  Maybe you should ditch the diapers/force your kid to sit on the potty for hours/acknowledge how much better I am at parenting than you.  Good for you that your kid was potty trained prenatally.  Mine is not.  Potty training requires a certain level of communicative ability that my child lacks and, realistically, may lack for a few more years.  Making me feel bad about it won't make it happen any faster.  Believe me, I wish my kid was potty trained, but I'm not going to stress him out about something that he's developmentally not ready to do.  
  2. Have you tried to feed him ________?  Oh my gosh, you're right!  I just didn't think to try feeding him foods that kids his age can eat.  No, I don't think my kid can eat a granola bar yet, because we're just getting used to applesauce.  I wish my kid could eat those things and we've tried.  Now that we're in therapy, I'm leaving it up to the experts to determine what we should try when.
  3. He doesn't look autistic.  Thanks, but what does autistic "look" like, exactly?  To my knowledge, kids on the spectrum look like everyone else.  They have good days and bad days.  Most kids don't stim 24 hours a day.  I'd urge you not to judge kids based on appearance alone.
  4. Can't you control him?  Not always, can you?  My kid has a developmental disorder and he processes the world differently than the rest of us.  This is his way of coping and/or expressing how he feels, because he lacks the language to do so.  Can you control your mouth?  No?  Then don't tell me to control my kid.
  5. He just needs a good spanking/time-out/other form of corporal punishment, flogging, or manual labor.  Holy S#!&!  Did you really just try to tell me how to discipline my child?  Really?!?  First, spanking is not effective punishment EVER, even for NT children.  Second, time-outs only work if your kid has the cognitive skills and receptive language to understand that they need to stay put for a specific period of time because they did something wrong.  Third, manual labor?  Really?
  6. You're overreacting.  That's how a two-year old acts.  Maybe.  There are times when my kid's behavior is the result of him being a toddler.  There are others when it's the result of him being on the spectrum.  I know the difference.  When my kid drops to the floor screaming because of the noise-level in the room, that's not two-year old behavior.  When he throws up while eating, that's not two-year old behavior.  When he gets mad at nap time, that is possibly two-year old behavior.  Or he can't handle the transition, which is spectrum behavior.  It's hard to tell at times, but usually the context of his behavior says a lot.
  7. I don't think autism is real.  Some kids are just a pain in the butt.  You and I cannot be friends.  Some kids are a pain in the butt, but there are many others who have biologically based reasons for their behavior.  Some are autistic, some have ADHD, others have Sensory Processing Disorder (SPD), but all have a biologically based reason.  Saying that these conditions don't exist is stupid, because our kids improve with therapy, not more discipline.
  8. Why does he act like that?  Why do you act like you do?  You know, you tend to say whatever comes to mind with no thought as to the consequences.  Now, if you're asking why my kid stims because you have seen your kid do something similar, I'll certainly discuss your concerns with you.  However, if you're saying it because you think his behavior is strange or it makes you uncomfortable, then that's a problem with you and not him, in my opinion.
  9. How do you feel about Jenny McCarthy?  She's gorgeous and I wish I looked like her, minus the boobs, which look painful.  If you're trying to gauge my treatment philosophies, I will not engage in that argument with you.  Sorry.  However, if you are the parent of a special needs kiddo and want to know because you are weighing your options, I'll gladly discuss it with you, but I don't like getting into debates over chelation, GFCF, etc.
  10. I know a fantastic therapist/DAN! doctor/spiritual healer/crack-pot who is the answer to your prayers!  Let me just make a quick phone call...  Hold on, stop right there.  I picked my kid's team because they are who I trust to care for my child.  If you're going to tell me that you know a fantastic spiritual guru who can sell me Tiger Blood guaranteed to cure my son, you're wasting your time.  I'm not interested in experimenting on my child, thank you very much.
So concludes this public service announcement.  When in doubt about what to say to the Mom of a special needs kid, just keep quiet.  We absolutely don't mind talking to you about our child's condition in an atmosphere of understanding and awareness, but if you seem downright ignorant about it, we can't be friends.

We love our kids fiercely and Mama Bear tends to come out swinging if you mess with the cubs.