Friday, September 28, 2012

Thank You, Eric Carle

Image Source:  Amazon
At the start of this school year, Jack's SN pre-K teacher told me that they were about to start a new reading curriculum this year.  Well, me being...umm...me, I wanted to know the name of the program, what they'd be reading, etc.  You know, the mommy 3rd degree.

I probably drive teachers absolutely nuts, but it's because I know my boy needs reinforcement - constant, continuing, unending reinforcement - to master concepts.  As I tell every teacher, therapist, and service provider that works with Jack, the work doesn't end when he leaves their care.  Therapy and school is a 24/7 adventure in our house.  It's incorporated into Floortime and into everything in between.

I went home and looked up the program called Read It Once Again.  At first, I was a little skeptical.  You see, Jack's learning style tends toward rote memorization.  His memory borders on eidetic at times and he can remember precise details of many things, especially ones that are repeated exactly over and over again.  You might ask, how can you be sure that Jack remembers such detail when he struggles to communicate and use more than single words spontaneously and meaningfully?  Good question, and I'd respond that a) echolalia is a window into what Jack has memorized - he can recite entire TV shows and books from memory (which is delayed echolalia, for those of you not down with the lingo), and b) other things, like the way he arranges things, especially based on Super Why! episodes, is crazy precise.

He's like an elephant; he never forgets.

So, when I was told that they'd be starting a curriculum where the same book was read every day for a month, I was a bit worried.  The program takes a single classic children's story - the first month's was From Head to Toe by Eric Carle - After all, that's just a ripe situation for rote learning and transition problems as they move from unit-to-unit.

However, as I read more on the program, to my astonishment I learned that it was designed for kids with autism.  It made sense; many programs for teaching children with autism are based on repetition, repetition, and more repetition.

But how would my boy do with this?  Honestly, with the exception of watching Super Why! and playing with his letters for the past...well...year, my boy doesn't exactly have a love of reading.  In order to read a book to him at home, we practically have to pin him down.  He'll kick, scream, and yell "all done!", particularly if the book isn't familiar.  The unknown is just far too anxiety-inducing for him.

At the end of the first unit, his teacher sent home a copy paper version of From Head to Toe.  I pulled it out of his bag and showed the first page to him.  It had a gorilla on it.  Of course, I wasn't surprised when he started spouting out the words as though on auto-pilot..."I'm a gorilla and I thump my chest.  Can you do it?"  He had heard this book every single day for 3 weeks, of course he had it memorized.

What came next was the surprise.  He raised his fists to his chest and in a primitive display of preschool virility, he beat his chest like Tarzan.

You get this, right?  Do you?  Maybe you don't, so I'll explain.  Jack has struggled forever with something known as motor planning, which is your ability to plan out a motor sequence and execute it. I suspect that's part of why Jack is so poor at imitating motor movements, because he can't plan and sequence the actions out in his mind.  When he was a baby, I'd watch intently to see if he'd imitate, as all of the baby books said he would early on.  He never did.  I'll ask him to "do like Mommy" as I try so desperately to get him to copy my actions by waving, sticking out his tongue, or anything.  They work on it in both OT and PT.  Even a simple motor sequence - like thumping his chest - is something that we've never seen him do before.

Until that day.  My boy just did a simple motor action that I had never seen him do before.  I turned the page.  "I'm a giraffe and I bend my neck.  Can you do it?"  He didn't "bend" his neck, but he shook his head.  Close enough.  I moved on.  "I'm a crocodile and I wiggle my hips.  Can you do it?"  He grabbed the front of his pants and pulled the fabric from side-to-side.  Again, close enough!

And so it continued.  He stomped his feet.  He turned his head.  He kicked his leg.  All on cue.

I couldn't believe it.  I had just seen my boy perform several motor actions that he had never done in my presence before!

You want to know the secret?  It was the repetition.  Someone - the para-pro, OT, or PT - was helping Jack obtain those motor positions through hand-over-hand assist every day until he could do it with just some gentle tapping for prompts and - finally - with just the visual prompt of the book.

I ran out that very next day and bought the board book version of the book so that Jack could turn the pages independently and look at the book himself - and he did.  He pulled it out several more times before the next book became ingrained in his mind.

This month, they've moved on to Goodnight Moon, so From Head to Toe has been forgotten.  I have tried to give him verbal prompts for the actions in the latter, but he doesn't seem to know it receptively (he doesn't understand the words verbally) so he needs the visual prompt from the book, which he's not interested in now that they've read Goodnight Moon for 4 weeks.  From Head to Toe is clearly so last month, and he screams "NO!" if I pull it out.

But now he's interested in Goodnight Moon.  He'll pull it out and say "Goodnight Moon", which is incredibly hard to understand in Jack-speak.  I'll prompt Jack with "Jack says 'Mommy read?'", which he'll parrot right back to me as he's backing up to sit in my lap.  He'll actually let me read it, but I don't always get very far into it before he walks away.  He hates it when I touch him, which is a challenge when he's sitting in my lap.  Unfortunately, I also haven't memorized the exact inflection his teacher uses, so I'm not doing it right.  I'm trying, though.

Still, my boy is interested in a book, if only for a short while before the next unit.  So, thank you, Eric Carle, for helping my boy with something so small - like thumping his chest - but so huge in our world. Even though I can't get him to replicate it (there's no chest-thumping in Goodnight Moon), you have no idea how big it is that my boy could do something like that.

Thursday, September 27, 2012

Support and Validation


A day six months in the making finally arrived - a day that has been much fought for, much anticipated, and very, very needed.

Jack’s school feeding evaluation was yesterday.  The journey that brought us here has been a long one, but worth every moment.

Jack’s feeding issues have been…well…an issue since birth.  We’ve worked so hard.  Jack has worked so hard.  He has made so much progress.  Really, he has, but he still needs help.  He still needs assistance to eat, regulate, interact, and do the things that preschoolers do.

Feeding not only causes Jack anxiety, it causes ME anxiety.  Never knowing when he’s going to choke, gag, or vomit has done a number on my stress level over the past couple of years.  Not knowing how he was managing at school, except to see food come back uneaten, was hard for this mama bear.

Six months.  That’s how long it took to get the feeding team out to evaluate Jack.  It took six months of referrals, discussions, and strongly worded emails, but it happened.  Finally.

Honestly, I wasn’t 100% certain it was going to happen this week.  So, you can only imagine my surprise when I arrived to pick Jack up and saw that the feeding team was still evaluating him.

I held my breath, not wanting to disturb the situation, but intensely curious as to what was occurring.  When they looked up from their paperwork and attending to Jack to speak to me, I felt like time was standing still.  Did they see the problems we were having?  Did they acknowledge it?  Or, was this going to be pushed under the rug and not addressed as feeding is “not an educational issue”?

They started by saying that they saw some positives.  They saw that Jack was far more successful at breakfast as he is in a smaller group and the sensory stimuli are minimal.  However, once snack rolled around and more was going on, Jack became dysregulated.  A child in his class cried at one point and Jack pocketed his food immediately.  He also began to stim and perseverate.  Feeding began to break down.

They didn’t see the oral-motor problems, but they saw enough.  They saw sensory issues that cause my boy to struggle at school.  They also saw that little was being done to address it.

And they got it.

They saw that verbal prompts weren’t helping when Jack got too dysregulated.  They recommended more visuals.  They recommended sensory, sensory, and more sensory prior to meals/snacks.  They recommended sensory during meals/snacks.  They didn't like the visuals that are being presented to Jack right now and they plan to make new ones for his teachers to use.  They also are going to encourage more use of visuals with Jack as his ability to process verbal instructions decreases with stress and sensory overload.

And I wanted to scream up to the heavens.  Thank you!  Thank you for seeing it!  Thank you for seeing that sensory processing problems don’t just manifest in the child that screams and disrupts!  Thank you for seeing that a sensory kiddo can simply shut down, start stimming, and become closed off to the rest of the world.  Thank you for seeing the need, for listening, and for acknowledging it!

The best thing to come from it?  A meeting and accountability.  A meeting between the feeding team and Jack’s school team - all of them - to discuss strategies that should be implemented to help Jack eat safely at school and with less stress.  Accountability due to a reevaluation after a few weeks of implementation of sensory and feeding strategies.  That's what I really wanted - a way to get my boy the support he needs and accountability to ensure followthrough.

It was a fight - it was one hell of a fight - and it was frustrating to get to this point; however, getting that validation that they see what I see and they see a problem that needs to be addressed is so validating.  It makes me happy to see that the advocating does come to something - that the fight was worth it.

But then I remember, results or no, Jack is always worth the fight.

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Wednesday, September 26, 2012

Me Too


I have to say that I am overwhelmed – simply overwhelmed – by everyone.  It’s been a rough couple of weeks, full of high-highs and low-lows.  We've encountered the good, the bad, and the ugly, both from Jack's personal struggles and from the world at large.  

Yet, the thing that strikes me is the ability of this community to step up and say “Me too!”

There have been moments when I felt very much alone.  I see what he can do in therapy and I see what he struggles with outside of those controlled settings.  The fact that so many stepped up to say “I hear you.  I feel this pain.  I know your struggles.” has simply filled my heart.

It’s difficult at times.  Jack has issues that not all kids on the spectrum struggle with as much, which makes life isolating when those issues are what comes to the forefront.  To hear someone else say “This challenge is mine, too.” is so affirming.  It reminds me that none of us are ever alone.  There is always someone out there with the same challenges.  You just have to find them.

There have been moments when the injustices of a world that doesn’t seem to fully understand my boy have been too much for me.  The simple things, like getting worksheets sent home blank when my boy didn’t participate in coloring, have been difficult.  To have someone say “You can own this pain and it’s okay to step back.  It’s okay to step back and not take the blows.” is so validating.

I'm not one for calling people out, but I want you to know that this gratitude is both for someone specific and no one specific.  Each and every one of you who reads this, who follows our journey, and who shares one step (or more) of this journey is deserving of my utmost gratitude.

And so, for that validation, for that affirmation, for the camaraderie and sense of community, I thank you all.

Tuesday, September 25, 2012

Battling the Inner Voices

All-in-all, we handle it well most days.  We can't block out the neurotypical world.  They're there - NT children - everywhere you turn.

Admittedly, we've had a rough week or so, regardless.

Several things happened this week that really cut me to my quick and left a dull sting of reality in their place.  Sometimes, I was left feeling like the world just doesn't understand.  Others, I was left feeling like it didn't matter if they understood or not, it didn't change reality.

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Earlier in the week, we were confronted with the fact that people will treat Jack differently.  I think that having an autism diagnosis makes some people wary.  They think that they can't have a "normal" relationship with Jack, whatever that means.  Sure, interactions with Jack may not look like they would with a NT child, but that doesn't mean that they're not worth having.  I feel like I will have to advocate for this until my last breath - that people should treat Jack with the same courtesy and respect as they would anyone else.  That he's worth the effort.

Others, knowing that Jack will easily meltdown, just stay away.  I don't know if it's fear, or lack of knowledge of how to approach, but it leads others down the road of avoidance.  My life is an exercise in engaging Jack, and I want to scream out to all "Watch me!  Model what I'm doing!  It's a work in progress, but worth each ounce of the effort!"

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On the heels of a momentous victory in our world, I was told by someone that I don't give Jack enough credit for what he can do.  It really bothered me and has left a barb in my side for days.  I've spoken relatively little about it, except to one of Jack's other therapists - the one who's worked with him since before he got his diagnosis - and who is so painfully honest that she would tell me one way or the other.  She actually laughed when I told her this, saying that she thinks I'm - at times - the eternal optimist.  That I try to emphasize in one-to-one dealings just what he's capable of with the appropriate support.

That's why I've pained myself trying to find an ideal academic setting for Jack.  I set the bar high, I know the support he needs to achieve those lofty goals, and I want to ensure that he gets it.  I want people who work with him to be educated on autism and all of it's aspects so that they are better equipped to deal with the self-absorption, the echolalia, and the sensory issues that can be easy to put to the back burner, but that are so vital to address so that actual learning - not rote memorization - can take place.

That's why it stung so.  I feel like I'm constantly trying to advocate for his abilities.  I also try to advocate against compartmentalizing Jack, as people tend to do.  They look at his splinter skill - being able to spell words from Super Why! with magnetic letters from memory - and it tends to become a side-show act.  Look at the amazing autistic boy spell CARROT with his letter set!  He can't color a picture, but he can spell MEATBALLS with magnetic letters!  I try to downplay this not because it's not a talent, but because people tend to emphasize the stranger aspects of Jack's disabilities, and that's not what I want to do.  He's not a spelling machine; he's a person.  He's a person who deserves respect more than watching him engage in non-functional behaviors.  He deserves engagement.

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Finally, we were sitting in a rare moment alone - Brian and I.  It was somber, but peaceful.  I look over to see tears in his eyes.  When I asked what was wrong, he said it was because he saw how nice and quiet the other children - children who were much younger than Jack - were sitting, and he wished Jack could be there, too.

Many people who work with Jack would say that sitting still is a lot to expect for a 3-year old, and it is; however, most kids manage it while still fidgeting a bit.  Jack, on the other hand, cannot.  His sensory issues - which I don't feel that everyone takes very seriously - keep him from being able to participate in many family activities, like going out to eat or even just going to the store.  He needs quiet, dimly-lit, mellow surroundings.  It's not always easy to find.

I feel the envy creep up from time-to-time and the sadness that Jack hasn't followed the path of his peers.  That some things we might love to do - like going Trick-or-Treating - are far more complex for his autism and sensory issues.  Usually, I try to bury those thoughts or release them on to the page, but seeing someone I love dearly feel the pain of these realities hurts more than when I feel it myself.

I think that those who treat kids with special needs aren't always aware of these issues that surround the whole family.  You don't know until you live it.  Until you see the years slip by and you wonder if you'll ever be able to take your child to Disney World and have him enjoy it before it all loses its magic.  Or if your child will finally understand Santa Claus before it's inappropriate for him to enjoy it.  Or if he'll ever get a smile on his face at the taste of ice cream or his birthday cake.  You worry that the joys of childhood will slip away with the years.

And all I could do to ease his pain was to simply squeeze his hand in an acknowledgement that I understand.

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I wish I could say that I wished that the world was different.  Ultimately, I don't wish Jack was different, because I love him for who he is.  He's happy in his life and that's what's important.  I do wish that things were easier for him.  I wish that the realities of autism didn't tend to collide with the picture in my head of what motherhood was going to be.  Most days I can adjust the picture.  Others, I cannot.

Some days are about the victories.  Others are about survival.  In the days of survival, I have to take solace in the fact that more victories are around the corner.

Monday, September 24, 2012

"A Heartbeat at My Feet"

My little dog, a heartbeat at my feet.  ~ Edith Wharton

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Today's post was going to be about strugglew.  Much has happened and it has - without a doubt - been a rough weekend in the Reinventing house.  Jack has struggled and it was one of those weekends in which reality slapped us in the face.  Coming off of a victory last week, we faced much more of the reality and the ugly side of autism this weekend.

What served as the bigger punch in the gut to me was not the challenges Jack faced this weekend, but the challenges that my sweet Mason encountered.

It was an unremarkable Saturday.  Brian was up early taking his parents to the airport.  Jack was up early as well, but that's just Jack.  Due to some excessive Pinteresting - if one can consider that to be a verb - I made a breakfast of cheese danish.  We took Jack to his special needs play and social skills group, dropped him off with his instructor, and came home to consume the product of my efforts.  It was...well...unremarkable, too.  Mason scampered at our feet, ever eager to be a taste-tester of anything coming out of the kitchen.

We cleaned up, picked Jack up from play group, and drove to his special needs music class.  Music was a challenge today.  Jack needed to be coaxed with letters to enter the choir room.  Once inside, he was seeking input.  I was constantly bouncing him up and down to give him the much needed joint compression.  He was alternating between letters, bouncing, and crashing on a crash pad.  At one point, everyone was singing about ice cream and he was asked what kind of ice cream he liked.  When he didn't respond - as no one really expected he would - I prompted him to say "no ice cream", which was the shortest way I could think of to say that he doesn't eat ice cream.  My heart sank a little.

We left with more transitioning struggles.

When we arrived at the refuge of home, Jack was still trying to come down from the struggle.  I barely noticed Mason.  I heard the familiar click-clack of his feet on the ceramic tile of our kitchen, but it wasn't until I looked over to him that I saw it.  He was dragging the left side of his body.  His front left foot touched the ground loosely.  He was bearing weight with it, but on the side of his paw or the top.  His paw was not reacting to the motions of walking as it should.  While not as bad, his back left foot was dragging the ground.

I ran to him, but saw no signs of distress.  No pain.  He simply was walking strangely; it was as though he was like Jack - not motor planning his stride correctly.  His foot wasn't reacting to the ground as you would expect.  From my years of working as a veterinary technician in college, I knew this was a possible sign of a neurological problem.

Leaving Brian to handle Jack, I took Mason outside to see how he would react to walking on the grass, which might give him more traction than the hardwood floor and tile.  Not only was he continuing to drag his left side, but he was walking in wide circles - another neurological sign.

This wasn't my first time seeing neurological signs in my pugs.  Our very first pug - Skip - passed away at 12 weeks of age from what was either determined to be hydrocephalus, a congenital neurological defect, or encephalitis.  He had a rapid neurological decline that included some symptoms like circling.  Our second pug - Champ - passed away 2 years ago from a brain tumor that caused him to suffer for over a year.

Mason didn't seem distressed, but I remembered how quickly Skip declined.  I scooped Mason up and took him inside.  Brian and I agreed that he needed to go to the vet that afternoon.  I called and made him an appointment for about 30 minutes later.

We went to the vet and were ushered straight into an exam room.  The vet agreed that Mason was showing signs of some kind of neurological problem, but whether it was a stroke or not was unclear.  It could have been trauma, but Mason hadn't had access to the stairs - which we keep gated for Jack's safety - while we were gone.  He showed no nystagmus - or scanning - of his eyes, and his reflexes seemed okay.  However, there was still the fact that he couldn't seem to place his left legs correctly in order to walk normally.  It was causing him to stumble and circle.

Mason is 14 years old.  Just 2 years ago, we tried everything to save Champy.  In the last year of his life, he underwent 6 surgeries to correct what we believed to be a chronic ear infection and abscess.  Instead, it was a tumor.  He suffered needlessly at our hands to correct something that was - ultimately - not correctable.

Here before me was my Mason, my sweet Mason who has seen me through so much.  He has seen me through getting married.  He was there when the pregnancy test came back positive.  He was there when I had a hemorrhage at 9 weeks and thought I was losing the baby.  He was there when I was placed on bed rest for preeclampsia at 35 weeks.  He was at my side all day.  He would rest his head on my stomach, as though he was listening for Jack's subtle noises - his heartbeat.

He was there when Champ died.  He was there when Jack's speech regressed and I felt more fear than I  had ever known.  He was there when Jack was diagnosed with autism.  He has been there through the meltdowns, through the assaults with fists and feet, and he's stood vigil as Jack flailed, screamed, and was out of control.  He stood by and watched, ensuring that Jack was okay.  He's been there through my tears and the bruises.  Through it all, he looked on Jack with nothing but love and understanding.  It was as if he knew long before any of us.  He's stood vigil ever since Jack came into existence, knowing that he was special and needed extra care.

He is my best friend.  My heart.  Suddenly, here I am facing the sad reality that my little love does not have the same lifespan that I do.  He's aging faster than I and there is nothing I can do to stop it.  In the vet's office that day, I did something I rarely do in public; I rested my head against Mason's and began to pray.  I wasn't ready to lose my Mason just yet.

Luckily, that wasn't the decision I would have to face that day.  We had the option of putting Mason through extensive testing to try to determine exactly what happened, but with no guarantees of getting answers or solutions.  Our other alternative was to put Mason on some medication for a few days and reevaluate him early in the week.  Ultimately, we decided it would be best to spare Mason the suffering from testing and to go with the medication trial.

He was able to walk, he wasn't in pain, and he didn't seem scared or distressed.  If his condition stayed the same or improved, we could live with limited mobility.

As the day progressed, Mason was able to eat and use the bathroom independently, which was a big test of how he would manage.  We felt better as we felt like we weren't facing the end.  A couple of days later - fast forward to today.  Mason's gait and mobility hasn't really improved.  He can get around, but he stumbles a lot.  Obviously, he can't really do stairs now, so I have 2 little ones in my house - Jack and Mason - who can't really do our stairs.  It's working my upper arm muscles.  We haven't seen any decline, which is a good thing.  We'll know more tomorrow when we decide where to go from here, but I'm feeling much more optimistic than I was over the weekend.

I'm not ready to let go of Mason yet, but I'm glad that it doesn't appear that I have to in the immediate future.  I looked at Mason last night and told him that I needed him to help me watch after Jack.  I need him to take care of me.  I'll never be ready to let him go, but I'll trust that he'll let me know when it's time.

Until then, I'm going to cherish each moment I have with my sweet Mason, the squishy, teddy bear of a dog whose heart is so wide that it takes on the troubles and challenges of the world and makes them all disappear with a nuzzle, a warm snuggle, and a kiss.

Friday, September 21, 2012

The Sweetest Echolalia There Is

Echolalia:  The immediate and involuntary repetition of words or phrases just spoken by others, often a symptom of autism or some types of schizophrenia.

from ECHO + Greek lalia, which means "talk"

~ American Heritage Dictionary

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Jack's speech development has been anything but typical.  When he was a little guy just past the age of 12 months, I used to sit with him in his highchair - face to face with my angel - and just pray to get something in return.  Anything.  A word.  A laugh.  A smile.

The words were not there.  The smiles and laughter were rare.  Instead, I'd get things that were worrisome, like constant vomiting.  Jack would also shake his head violently from side-to-side, though he has yet to shake his head as a way to gesture "no".

Jack's language development has taken so many twists and turns, from the delays to the God-knows-how-scary regression to being non-verbal and then back up the developmental ladder once again.

The language development came painfully slow.  Trying to connect the dots between an actual concrete image or object and the symbolic representation - the word - was difficult.  We had to get across the purpose of language.

About a year ago, the words began to come.  When they did, his language development took another deviation from the norm.  Enter the world of echolalia.

I think that echolalia is very difficult for someone who is unfamiliar with special needs to understand.  You see, echolalia is exactly what it sounds like - a child "echoes" what he or she hears.  We all use echolalia from time-to-time.  Each time you say a one-liner from your favorite movie, you are engaging in echolalia.

Where it gets tricky is when people don't realize what exactly your child is doing.  Jack will say full sentences when he's echolalic - when the words aren't his own - but when he speaks spontaneously his language takes the form of one-word, maybe two-limited word, phrases.

Some kids use echolalia functionally.  Others use it as a comfort.  Jack tends to do the latter.  On any given day, about 80-90% of his speech is echolalia, with a smattering of increasing spontaneous speech thrown into the mix.

For many kids on the spectrum, echolalia takes a couple of forms.  One is known as immediate echolalia, in which a child repeats what they've just heard.  For Jack, one of the most common ways we'll hear him do this is repeating questions back to us rather than providing a response.  So when we say "Do you need help?", he'll say "Do you need help?"  He knows he's supposed to say something, but doesn't know what the appropriate response is.

The second form is delayed echolalia - or repeating things heard in the past.  Jack will repeat entire scripts of TV shows verbatim, even using the same inflection as the original.  Jack's memory is incredible; he can remember entire songs, TV shows, and scripts from his iPad or other toys after only hearing them once.  Whether he fully understands what he says is something else entirely.

If I had to have a favorite form of echolalia, it would be Jack's singing.  He hates - absolutely hates - when I sing, but his song is another story.  Music simply speaks to him.  He could sing before he could speak.  The words come out a bit garbled as his articulation plummets with his echolalia, but the melody is fully understandable.  The words are music to my ears.

And he loves it.  He flaps and smiles in those outward expressions that are so uniquely Jack.

We use song as a way to create circles of communication with Jack.  As I mentioned in a recent post on Floortime techniques we use in our house (you can read this post --> here <--), this is a favorite.  I will begin to sing a song and wait for Jack to fill in the blanks.  It's a way we can interact and a way that we can have that back-and-forth exchange with our boy.

Sure it gets stimmy.  It also gets very scripted.  Is each word precious coming out in Jack's little high-pitched voice?  Absolutely.

Do we need to work on communication skills more?  Oh, God yes.  We will keep working - likely forever - to help Jack communicate his wants and needs to a world that seems to speak a different language than he does.  For the time-being, I'll relish each word and note, whether they are his own unique thoughts or not.

It may not be communicative in quite the way that the rest of us do it, but each word is ever so sweet.

Monday, September 17, 2012

What I Would Have Said

I've never been the emotional type.  Ask anyone.  Ask my husband.  I remain about as even-keeled as any person.  It's not that I'm unfeeling.  It's not that I don't care.  It's that I just don't express it well with my body language and verbal abilities.  That's just who I am.

It's only when I put pen to the page that the words make more sense.  So, here goes...

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From day one when you emerged into this world, you were to command attention.  You felt at home on stage and took comfort in putting on a show.  I would have preferred to sink into the background, content to be a wallflower.  You seemed to relish in the limelight while I preferred - and tended - to be invisible.  Your mind was full of creativity and spirit, whereas mine was crammed with enough logic and reason for the both of us.  You seemed to improvise your words and could draw in an audience with your voice, while I resorted to the page for expression.

You were the eternal fighter, determined to keep standing for your cause no matter how right or wrong you might be.  I only found my fighting spirit to be ignited by my boy, otherwise I preferred the road of less confrontation.  You embraced the lighter side; I was always the planner, the worrier, and the serious one.

Even our physical appearance seemed to stand as a testament to the variety of expression - as contrasts to each other.  For two people who share DNA, we looked like opposing souls with my height and your, shall we say, lack thereof.  My hair was thin and straight, so yours was naturally curly and thick.  You always bore the appearance of a woman, while I seemed a woman trapped in an elongated little girl's body.

There could not be two people more different than you and I.  The one thing that we do share is that we've known each other longer than we've known just about anyone on Earth, save our parents.  This is why this weekend seems especially bittersweet.  You see, I remember you being the "new baby".  This is something that so few people can say about you.  I remember seeing you in the hospital and I remember when they brought you home.  As the oldest sibling, it seems strange to see the "babies" growing up, but I guess it happens to us all.

Life is transitional by nature; life is full of changes.  Nothing lasts forever.  Children grow, they move forward in life, and they create lives of their own.  We each approach these changes with apprehension, but they are part of the natural progression of life.  As much as we might resist - or as much as we might want to speed up the clock - life will happen to us all in its own time.

Now, you're at the precipice of one of the biggest changes you face.  I know better than anyone that life can throw you a curveball, but simply learn to adjust your stance.  Learn to lean into the changing winds.  Don't fight the changes; embrace them.

It's tempting to approach with fear, but know this - I have faith in you.  You are a fighter.  You will move forward and leave a blazing trail behind you.

So, as you enter into the advent of this next chapter of your life, be not afraid of what lies ahead.  Take the hand of your new husband and prepare for the journey.  Create your own home - independent of everyone else and their opinions, for this is YOUR life - and make it a place of sanctuary for your family.  Spread your wings and allow the wind to carry you.  Have the courage to be yourself and think independently.  Embrace your spouse, but always retain a piece of all that is you.  Find your own strengths and allow yourself to show them.  Do not live your life solely for someone else.  Don't allow anyone to tell you what to think, how to feel, and what to believe.  Always keep a little bit of yourself for you.

The other thing of which you might be unaware is that I am always watching over you, rooting you on, and being one of your greatest champions.  I just don't operate in the spotlight; I prefer to work in the background.  I tend to get pushed to the side, but that's because I allow it; it's not because I don't care.  No matter where life takes you, I will continue to watch over you, pray for you, and guide the universe in any way I can to bring all of it's blessings unto you.

I may be awkward.  I might be unable to hug in a normal manner.  I might not be as showy with my displays of affection towards everyone, but know that I love you more than just about anyone in your life, whether you realize it or not.

So it is with a heavy heart that I see you take those next steps.  Don't let life get the best of you.  I'd tell you to give 'em hell, but I know you will - more so than I ever could.

Most of all, take solace in the knowledge that you are more capable than you could possibly imagine.

Love,

J

Friday, September 14, 2012

He's a Biter

This has been a crazy week.  Monday brought my unbelievable Matchbox Twenty experience (to read about that, click --> here <--), Tuesday ushered in the arrival of my grandparents, and the weekend will bring a family wedding.

Wednesday brought that 6-month sensory fiasco known as a dental cleaning.

The experience was - luckily - short and sweet.  We go to an amazing pediatric dentist who is very accommodating of special needs kids.  When we go, we are the only patients in the office.  They make the experience very brief and don't try to push Jack too far over the edge.  They also seem to understand Jack's sensory issues and autism.  It's been a good situation so far.

This visit, I was a bit apprehensive.  Jack's been pocketing his food pretty badly over the past couple of months, so I was concerned about the possibility of cavities.  We do our best - our absolute best - to try to keep Jack's teeth clean.  Sometimes he tolerates tooth brushing.  Sometimes, not so much.  To me, dental hygiene has always been non-negotiable, so we tend to just hold Jack down during the not-so-great times.  We're going to get those teeth brushed even if we take a few roundhouse kicks to the face.

In fact, last time the hygienist did take a roundhouse kick to the face.  The dentist also got bitten (to read all about our first dental visit, click --> here <--).  It was fun.

Pulling up into the parking lot, I felt a brief glimmer of hope.  Jack didn't seem to remember where we were, which is remarkable because he never forgets.  He's like an elephant.  We drive past the children's barber and he starts saying "all done haircut".  Each night, he says "all done medicine" (the last time we gave him medicine before bed was over 6 months ago) and "all done cut nails" (which we do more regularly and he hates with a passion).  With each, he's parroting what we say to reassure him. He wants us to confirm - "all done medicine; all done cut nails" - so that he can rest easy.

Now, he doesn't know the word "dentist", but I was expecting him to break out in the "all done"s.  They didn't come.  Brilliant!

Of course, I spoke too soon.  We went in and saw another little boy from our therapy clinic who was there with his ABA therapist.  We exchanged prompted greetings and still so far so good.  I was very optimistic.

"Jack?" the hygienist called from the door.  The second that registered, Jack dropped to the ground screaming.  Damn.  I tried to haul him to his feet, but he's getting so big that if he doesn't want to walk, there's not much I can do to force him.  We were on a schedule, so I wrestled him up off the ground and carried him back.  His anxiety was much higher this time; he had remembered after all.  The decision was made to move him into an exam room rather than the hygienist bays, which I thought was smart.  In addition, they called in reinforcements - 2 assistants plus the hygienist - all to handle cleaning my boy's teeth.  In an act of mercy, they told me to just stand back - that they didn't want me to be the bad guy for holding him down.  I appreciated that gesture, but I got the feeling that Jack wouldn't really be mad at me specifically either way; however, it was good for my breaking heart to stand back from it all.

I reminded the team of one important fact - Jack is a biter.  Anything and anyone who ventures into his mouth is liable to get bitten.  Jack's speech therapists are always very careful when they do oral-motor work, either placing oral-motor tools in his mouth or giving him ample notice and reminders to be gentle when they place a finger in his mouth.

It wasn't more than a minute or two later when I heard a yelp through my boy's continued screams.  Jack had indeed gotten a piece of the hygienist.  I hope she's up-to-date on her tetanus shots, because I'm sure that my kid isn't the only biter.  But still...no one wants their kid to be the biter.  I think the worst part was when he bit down on her metal scraper, which shoved it into his gum.  I'm not sure he was aware of the pain (his screaming sounded pretty much the same), but his gums were bleeding.

The reinforcements we called in did help.  No one got kicked, but my boy screamed and struggled.  In a way, the screaming made it easier to do their job, as his mouth was wide open from the wailing.  They tried to soothe him, but no dice.  They even tried to claim that the fluoride treatment tasted like cupcakes, but I assured him that cupcakes were not Jack's friend and that he could care less what it tasted like.  It was being held down and having hands all over his face and mouth that was offensive.

They wanted to take x-rays, but Jack was so upset that everyone agreed that it would be best to skip them at this visit.  It left me wondering, How the hell will they get x-rays on him?  I can't see him putting the x-ray film in his mouth voluntarily, and even if he does, I can see it gagging him.

Dr. Dentist finally came in and took a look in my boy's mouth.  I anxiously awaited the verdict.  Cavities?  No cavities?  Oh God, what will we do with cavities?  

Luckily, Jack's mouth was cavity-free.  He doesn't eat very much sugar, so I'm sure that helps.  We did discuss the possible need for some kind of additional fluoride supplement in the future to help further shield Jack's teeth from the pocketing.  Dr. Dentist also said that Jack's teeth looked good with regards to wear on one side versus the other, since he almost exclusively chews with the left side of his mouth versus the right.

With that, we were done.  Jack still was heaving and sobbing as I picked him up.  We walked over to a prize machine and I put a token in for Jack to get a bouncy ball.  I handed him the rubbery green-marbled ball and he just held it tightly in his hand.  He wasn't going to look up.  I could tell that the anxiety would only subside once we were safely on our way.

So, I'm calling it a semi-win.  He had no cavities, which is the ultimate win; however, he did bite someone and we didn't get the x-rays.  I'm hoping that as he ages, as his comprehension of language improves, and as we gain more sensory and transitioning strategies, we will see dentist visits, haircuts, and nail trims all get easier.

If not, we'll just keep on keeping on.  That's what we have to do.

Thursday, September 13, 2012

Every Little Thing You Do Is Tragic

Holy crap...I won Matchbox Twenty tickets!!!

Holy crap...I can't go...  :(

~ My personal Facebook status, last Friday afternoon

---

After yesterday's much more serious and honest post, I had to talk about something a bit more light-hearted today.

About 2 weeks ago, I entered an online contest to win tickets to an intimate acoustic show featuring Matchbox Twenty.  I love Matchbox Twenty.  There's just something about listening to them that takes me back to college.  I remember listening to them in lab or while studying in my apartment.  My soundtrack of those years included 3 AM and Push.

I never imagined I'd win.  After all, I've won just about nothing in my lifetime.  Imagine my surprise when I get an email from a promotions assistant for the radio station letting me know that I had not only won, but that I'd also get to meet the band (!) and get my picture taken with them (!!!).  I'm sure the squeals could be heard 50 miles away.

Then, I saw what time the concert started - 11:45 AM.  On a weekday.  As you can imagine, the swearing ensued.

Here's why - this once-in-a-lifetime opportunity was going to affect both therapy and carpool that day.  The mommy/martyr in me recoiled from the whole idea.  Don't go, Jeanie!  Sacrifice yourself and that chance to make eye contact with Rob Thomas!

(Does that make me sound like a creeper?  I don't really care.)

So many of my mom friends stepped up to the plate for me.  The encouragement I got was incredible.  I was hearing that I should do something for me.  That taking a day off wasn't going to make or break Jack's progress.  That I should go have a good time doing something that was fun.

My confidence rose within me.  Maybe, just maybe, Jack could take a day off of therapy and have a midday babysitter in order for me to do something for me.  Maybe I didn't have to always sacrifice.  Maybe the world wouldn't think poorly of me for doing this.  Maybe I was the only person who would look down on me.

Come the day of the show, I began to feel remorse.  How could I be so selfish?  How could I take that time away from Jack during the portion of the day when he is my sole responsibility?  How could I justify that going to a concert was more important than going to therapy?

I felt the guilt monster creeping up on me.  He remained there, hanging on to my back as I readied myself that morning.  He remained when I picked Jack up at school.  He was there when I turned Jack over to someone else to watch him.  He even clung to the car as we drove away.

The funny thing is that the further away I got from home, the less that monster kept hold over me.  I started to let go.  I started to look forward to what was coming and not regret what I was temporarily leaving behind.

I needed to give myself a break.  I arranged for someone to watch Jack and I rescheduled OT for the day.  I found another special needs mama to join me for the show; it made me feel great that another mama who deserved a chance at a special treat/break could take my second ticket.

I'm so glad I did, too.  Otherwise, I might not have been this close to this:


And I might have missed out on this:


And I never would have gotten to do this (and yes, that's me shaking Rob Thomas's hand!):


I even had a conversation with him!  Well, technically a conversation; he introduced himself - as though I wouldn't know who he was - and I said "My name is Jeanie" and withheld my desire to give him a hug, which might have crossed into the "creeper" zone.

And all of the above - hanging out with another mama who gets it, shaking hands with a man with one of the most gorgeous voices in music, and getting to kick back for just a few hours - was so good for my sanity and my soul.  Did Jack struggle a bit during the rest of the day?  Of course.  We changed things up on him and that makes the poo hit the fan.  Was a little down-and-dirty-autism-reality worth the couple of hours I had earlier?  Probably.

Not probably.  Definitely.

Wednesday, September 12, 2012

Tell Me What's Wrong

Communication.  So many of our kids struggle with it.  Be they verbal or non-verbal, our kids struggle to use their words in a meaningful way - particularly when it comes to telling us what's wrong.

Take Jack, for example.  He's getting great using single words.  He does okay with tagging "more" and "all done" onto a word, but he still tends to resort to the single word for the affirmative or "all done" for the negative.  He's emerging in "yes" - a word I never thought I'd hear come from his mouth - and "no", the latter of which we hear more frequently.

That's about the extent of it.  When it comes to telling me anything else - particularly what happened during his day - we're lost.  That's why when I see a behavioral shift that is difficult to explain, I wish I could ask him what happened.

Today, Jack was in a session with one of his SLPs.  It was a fairly typical day for him so far.  I heard him start crying at one point, which isn't in and of itself unusual.  He tends to just melt into tears when he gets overwhelmed or has a lot of demands placed on him.  It's just Jack.  Unfortunately, I've had to get used to it.

When I found out the trigger, I was a little concerned.  You see, Jack's SLP made a Mr. Potato Head walk, narrating the action with "Mr. Potato Head walks" or something along those lines.  At the sound of the word "walk", Jack began to bawl.  He was clearly very upset, as he also crawled into his SLP's lap to be rocked.  That's not something he ever does unless he's very, very upset.  He doesn't seek comfort - ever - unless he needs that input from rocking.  So, his reaction was very concerning.

On the way out of therapy, I decided to try a small experiment.  I started singing a song I tend to sing to keep the cadence for him - "We walk and walk and walk..." - as singing tends to keep him calm.  Well, he froze in place and wouldn't move.  No crying, but he was visibly anxious.  I got down at my little boy's level and looked into his blank face.  I looked at him and said, "All done walk.  Let's go!" in an effort to diffuse the tension.  He began to walk again, but I was left with an uneasy feeling.  What the hell is going on with my boy?

Ms. SLP asked me if I knew if and why "walk" might be a trigger word for Jack.  Honestly, I had no idea.  Walking has been a concern and a behavioral program for Jack for over a year (to see why, click --> here <--), but the primary person who concentrates on walking with Jack is his special instructor.  I'm present for all SI sessions, so I know that nothing has happened that should have caused his reaction today...at least nothing that I can pin-point.

They also work on walking at school, but I'm not aware of anything that happened there, either.  The problem is that he can't let me know what is going on.  I wish I knew, because I can't fix it when I don't know what's going on.

It happens to our kids all the time.  Jack will come home sometimes with a bruise in a strange place, the worst being on his throat.  One time, he came home from an activity with bite marks on his arm.  Did they come from him?  It wouldn't be out of the question, as he has bitten himself in the past, but did they come from someone else?  Each time, no one really knew what had happened.  Jack never cries when he gets hurt - he is under-reactive to pain - so no one saw what occurred.  And Jack couldn't tell me what happened.

Obviously, I'm going to have to be a detective and try to figure this out.  I know this - it doesn't seem to be the act of walking that brings fear, just the word.  Why that is, I don't know.  

The one thing I do know is that I will cry tears of joy the day that Jack can answer one of two simple questions - "What's wrong?" and "Why?"

What have been some of your child's triggers?  Have you had any that were difficult to figure out, or to figure out why they were a trigger?

Tuesday, September 11, 2012

A Day I'll Never Forget

I wonder if there will ever be a year that I will be able to do a post on this date without referring to that day.

That day eleven years ago.

That day when I looked out of my 10th floor apartment window downtown and - looking down on the world below - and saw the masses fleeing my beloved city.  My beloved home.

I never felt so scared prior to that point.

I never felt so alone in a city of thousands.

I was angry.  How dare they do this?  How dare they rock my world?

---

Today, the world is different.

Very different.

I have siblings who have lived in a world in which this is the norm.  They never know a time in which you could meet a family member at the gate at the airport.  Or that you didn't have to put liquids in clear, quart-sized bags.  Or that you had to remove your shoes in security lines.

What about my boy?  Will he understand this?

Will he understand just what we lost that day?

I cannot answer that.

Maybe he will.

Maybe he won't.

Maybe he'll understand it as a historical event - not unlike Pearl Harbor or the assassination of JFK to my generation.

Maybe he'll understand it in a concrete way - killing is wrong.  What the terrorists did was wrong.

The world I bring my child up in is very different than the one of my childhood.

---

Every year, this date will always bring pause.

We'll never forget.

I'll never forget.

I'll do everything in my power to make sure that the memory of what we lost as a nation on that September morning - both the loss of life and innocence of a generation - is not lost on my boy.

He will know.  Some way, some how, some day - he will.

Monday, September 10, 2012

What Am I Doing Wrong?

My boy went to speech today.  His SLP tells me about the language she got out of him that day and I can't help but feel jealous - so incredibly jealous that she gets to hear that.  He's pairing words for her that he's not doing for me.  I ask her what she says - what she does - to illicit it.

I go home; I replicate it, word-for-word.  I incorporate it into our Floortime.  I work so hard to get more than just single words and "more"/"all-done" combos.  Nothing.  I prompt him to elaborate in the way she says that worked for her - "Jack, tell me more!" - and he only responds by echoing back "more".

At school, they get the same thing - single words.  "More"/"all-done" combos.  In a way, that makes me feel better, because it's not just me.  I know that other therapists don't illicit this from him, either.  Still, though, it makes me feel like I'm not doing enough.  It's a dreaded beast that I do battle with daily.  Am I doing enough for my boy?  Do I fight enough for him?  Do I work hard enough?  Am I providing every opportunity for him?

What am I doing wrong?

Please tell me that I'm not the only one who feels this way.  Say I'm not the only one who hears great things from therapists, or teachers, or anyone, only to struggle to duplicate it at home.

In my mind, I try to justify it.  He's in a sensory gym doing sensory-motor activities.  He's given models.  He's given prompts.  He's in an ideal 1-to-1 situation with a trusted therapist.

Why can't I be that trusted person?  Why can't he feel so at ease here with me to get it?  It makes me feel inadequate.

So - that's it, short and sweet.  I put it out there, put voice to it, because I'm hoping that I'm not the only person who feels this way.  If I'm not, maybe I can help someone else feel like they're not alone in feeling this inadequacy and maybe I won't feel quite as alone myself.

Friday, September 7, 2012

Weathered Hands

Happy Friday, my friends.  I'm over at the SPD Blogger Network today!

You know that feeling when you meet someone, look at them, look at their kids, and you just know.  You've been here, too.  You have walked in my shoes.  You understand.  

Please take a moment to pop over there and read about my encounter with an extraordinary grandmother at the link below:

http://www.spdbloggernetwork.com/2012/09/07/weathered-hands/

Thursday, September 6, 2012

You Can Dress Him Up...

As we approach the arrival of Fall, I looked in Jack's closet to assess his winter clothes.  There I saw it - last year's Super Why! costume that Jack refused to wear (to read why, click --> here <--).

The obsession with Super Why! is far from over in our house.  We've been going strong on Super Why! for over a year.  Since the costume was slightly too large for Jack last year, I shelved it in hopes that this year would be better.  We tried the costume a couple of days ago with the same effect as last year - screaming, screaming, and more screaming.

Far from ready to give up on a costume that I knew would be very motivating, I approached the situation in a new way.  Like Dr. Psych has said to do, I approached the situation like a sensory detective.  What was it about this situation that sent Jack's anxiety sky-high with a costume that should have delighted him?

Brian noted that Jack seemed upset when the Velcro was opened.  The Velcro on his costume is loud - very loud - so I decided that it might be better to open the Velcro closures in another room where he couldn't hear it.

We also knew that Jack couldn't stand the feel of the cheap Nylon material of the costume.  Unfortunately, there is little I could do about that.  They don't make a 100% cotton version of it, and I'm not so great with a sewing machine yet.  

But...I could block his skin from touching the fabric.  I could keep his socks on so that he couldn't feel the Nylon with his feet.  I could keep something thin and soft - like his pajamas - on him so that he couldn't feel the Nylon against his skin.  I would also just ditch the idea of him wearing the mask.

I set about my grand experiment on Monday morning, which was a school holiday for Labor Day, and it worked.  Did you hear that?!?  IT WORKED!  We went from a child who screamed when it first touched his foot to this...


And if he looks wary of the situation, we soon got this...


And the tentative smile you see above later morphed into this...


And the ultimate feeling of satisfaction in the battle of Jack versus the costume...Jack won!


The take-home lesson from this exercise is that Jack didn't conquer his sensory issues.  We didn't conquer his sensory issues.  They were still there, raging on, but we found a way to make it work.  We adapted the situation and took into account his sensory needs and only by doing so did we find a way to help Jack enjoy his costume.  

It showed us yet again that there will be no winners if we fight his sensory needs.  We must work with them and consider how he experiences the world.  I can't expect him to always adapt to the world; I must adapt the world to him.

So, fists up in the air, Jack!  You should feel great!  I'm pumping my fists right along with you.

Wednesday, September 5, 2012

Novelties

Sorry Mr. Cosby, but Jack's
still not gonna eat it.
Lately at school, Jack's class has been doing some "cooking" activities that coincide with their reading units at school.

Last month's unit was based on Eric Carle's From Head to Toe.  It's a precious book about how children can do many different things.  For Jack - who struggles with moving his body and imitating movements - it's fantastic to see him moving along with the story.  The nice thing about their new reading curriculum is that they read the same story every single day for an entire month, but it allows our kids the repetition they need to follow along, do the motions, and know the story.

But the cooking and, consequently, the eating!

Food - both Jack avoiding it and various issues with Jack eating it - have dominated our lives since the moment our little boy was born.  No matter what I do, his comfort level with novel foods never seems to improve.  He likes his same several foods, and that's it.  Others cause a struggle.

Last week, the cooking activity was making chocolate pudding with Nilla Wafers for "camels' humps". Jack's had a choking scare with a therapist involving a small, round cookie before, so I asked them to not provide Jack any Nilla Wafers.  I knew he wouldn't care.

The pudding, on the other hand, was a different story.  Pudding is a funny beast in our house.  It's smooth, which would be an ideal texture for Jack - not unlike yogurt, right?  Well, pudding is thicker than yogurt.  Yogurt also has a mild flavor, whereas pudding is sweet - very sweet.  It sounds crazy, but I know my boy.  I have learned to see foods as he does.  He doesn't like sweet foods, and he might find pudding too sweet.

We actually tried pudding with him at one point.  We tried vanilla pudding and it made him gag.  Like many foods, we tried it again.  And again.  And again.  It can take a child up to 20 times of having a food - or more, if you're Jack - before they will willingly accept it.  After several weeks of Jack having intermittent gagging/vomiting episodes with pudding, we gave up for the time-being.  He obviously wasn't ready.

However, I wanted Jack to try.  While he's young now, I know that self-limiting his diet will not only cause him to have nutritional holes in his diet, but one day it will be a social isolator as well.  When his friends are all enjoying ice cream and he is sitting at the side because he refuses to eat it, that will make him seem even more different than he already is.  I want him to eat a diet like his peers so that he can one day enjoy the social aspects of eating.

We also are realistic, too.  While I wanted him to try, I never like forcing foods on him.  So, I had a back-up plan.  I asked his teacher to give him pudding sans Nilla Wafers and give him a few minutes to think about that.  Then and only then could he have his usual snack - yogurt - if he would not eat the pudding.

Friday rolled around.  When I went to pick Jack up from school, I asked how the pudding went.

Well, it didn't.  He didn't want to eat it, which I anticipated, but he also wouldn't participate in mixing and preparing the pudding.  He didn't want to stir it.  He wanted nothing to do with it.  It was new, it was different than his beloved preferred foods, and he wasn't going to have anything to do with chocolate pudding.

In a way, I'm glad I wasn't there to see it.  It's always difficult to see your child crying because of something so enjoyable - like chocolate pudding - when he should be gleefully lapping it up by the spoonful like his friends, but that's just Jack.  It's who he is.  It may be who he will always be.

Next month promises to bring with it new food challenges at school.  There will first be trail mix made with Cheerios, M&Ms, peanuts, and raisins (he can only eat the Cheerios), then Jell-O with peaches (a dreaded combo food), oatmeal with raisins (sans raisins, the only problem will be gagging/vomiting), and finally a peanut butter banana shake (if he would actually try it, he might like it, but he refuses liquids except for milk and an occasional sip of water from my Nalgene bottle only).

We'll keep introducing foods.  Obviously, some of the foods they are trying Jack will be unable to chew and swallow safely (raisins and peanuts), but others he could try.  I want him to try.  I want him to enjoy this as much as his classmates.

Here's to novelty and to (hopefully) trying new things.

Tuesday, September 4, 2012

The Good Kind of Labeling

I've been known to label people in my life.  It comes from a horrid inability of mine to actually speak to my neighbors, so I tend to create names for them.  That way, when I'm speaking about them to Brian, he knows to whom I am referring.  I've lived near a Scarface, a Smoking Man, a Cat Lady, and a Baby's Mama.

So, yeah, I know a little about labeling.  However, this is about the kind of labeling that won't get you into trouble with the neighbors.

Special needs parents look at the world in a different way.  We are so acutely aware of what our kids are and are not doing, but sometimes we miss the obvious.  I tell people all the time that I wouldn't know normal development if it jumped up and punched me in the face.

Now, that being said, we're not blind to what other kids are doing that our kids cannot do.  I think that this is all the more apparent to me when I hear other kids speak.

You see, my child is verbal - he is able to produce words, albeit garbled and difficult to understand ones at times - but most of his speech is echolalic.  I explain it as this - he speaks, but he isn't saying anything.  That's not fully accurate, either.  I know that my boy has things on his mind, he just can't get them out.  About 85-90% of what he says around us is scripted, rote, and echolalic.  He can hear a TV show once and begin to script it word-for-word, getting everything perfect down to the inflection.  He has no idea what it means, but his memory is so incredibly amazing - his ability to memorize puts the rest of us to shame.  That's autism for you - being able to memorize entire scripts with astonishing accuracy, but having little understanding of what you are repeating.  Sure, it's words, but it's not functional.  It serves no purpose.  It is a form of self-stimulation and comfort for Jack and it doesn't have any meaning to him past the coping aspects of the repetition.

The other 10%?  He can use single words and some two-word pairings, particularly "more" or "all done" plus a familiar noun.  He's been able to speak for just under a year and each word has been a blessing.

When he started speaking, he was speaking single words like "glug-glug" (his word for milk), "choo-choo" (Jack-speak for train), and "all done" (which counts as a single word and has been his favorite since he became verbal).  When asked at that time if he was labeling objects, I said yes.  After all, he said "choo-choo" and "glug-glug".  Those are labels, right?

Well, I didn't know what labeling was.  Again, normal development is a foreign language that we don't speak in this house.  We didn't see that he wasn't really labeling anything.

Until this summer.

I remember the first time I heard it.  It was unmistakeable.  It was Jack labeling something in his environment.  We were taking a walk around the neighborhood in Jack's wagon, which was a nearly nightly ritual in those days.  I heard it as I raised my eyes and saw it.  Jack said "bicycle" - a formal way of saying it for a 3 year old, to be sure, but a vocabulary word remembered in all its formality from his iPad - as we passed a bike.  He saw a bike and said it.  He said "bicycle"!  He labeled something!

There was no pointing to it.  No fanfare.  None of the typical child "Hey look, Mom, a bike!", but just an expression of what he observed that was so uniquely Jack.  He was commenting to himself about something he saw.

It wasn't his first word, but it was a momentous occasion nonetheless.  He noticed something in his environment - a challenge in and of itself to my boy - and correctly labeled it.  Sure, he sounded like a little old man calling it a "bicycle", but he said it.  He said it!

As the summer progressed, we've seen the labeling continue.  I keep waiting for the labeling to be paired with a point or - one day - a "Look!", but I'll take it for now.  Because my boy is noticing things.  He sees them.  He knows what they are.

Each time I hear him say "Car" or "Bus" or "Train", I smile with pride.  Those single words that encompass such an exclamation of understanding about his world.  He's making connections between what he sees and a word.

And I love it.  Label away, baby.  Label away.