Monday, October 31, 2011

10 Worst Kids' Halloween Costumes

It's that time of year again...

Halloween is upon us and I'm was determined this year to go ahead and get Jack's costume so I would not be scrambling to do so a week before Halloween.  I remember thinking last year that surely Jack would be able to tell me what he wanted to be for Halloween this year.  Well, we're not quite there yet.  I also have to take into account that Jack's world revolves around the following:

Thomas the Tank Engine
Super Why
Casey Jones
LETTERS

Since I'm not sure if he'll even recognize other costumes, I'm tried to dress him in one of the ones mentioned above.  I wanted his costume to have meaning to him, even if it means he's Thomas for the second year in a row.

It didn't work that way.  Conventional costumes set off tactile sensory meltdowns, so we've resorted to putting him in pajamas that look like a skeleton, because to him, it just feels like PJs.  Does he realize what a skeleton is, or that he's even wearing a costume?  No, but that's okay.

That being said, in the pursuit of cute (costumes, that is), I found several that are definite losers.

1.  An Oompa Loompa.  Alright, I don't know why, but for some reason the thought of dressing my child up like a candy-making mythical creature that gets often used as a reference to all kinds of derogatory things seems wrong.  And really, what child says, "Hey Mom, can I be and Oompa Loompa this year?"  And what Mom suggests it?

2.  A Flying Monkey from The Wizard of Oz.  Again, with all of the costume choices that kids can make, who is going to ask to be a flying primate?  What Mom says, "You know what would be cute?  You should dress up like a flying monkey.  Then you can kidnap unsuspecting girls in the woods!  It would be so adorable!"  Nope, I didn't think so.

3.  Generation Z Zorro.  If Darth Vader and Zorro made a baby, this would be the result.  Part evil, part good, carrying a lightsaber.  It's not from a galaxy far, far away...it's Zorro!

4.  Characters from horror flicks from their parents' generation.  Okay, unless I am mistaken, I'm fairly confident that there are no Hellraiser or Chuckie movies rated G or PG.  However, these two costumes are in little boys' sizes...like for Kindergartners!  Nothing says cute little boy quite like a mask with spikes.  Do kids this young even know who Hellraiser and Chuckie are?!?

5.  Hedwig.  Okay, nothing against Hedwig or anything, but parents, if you're going to dress your kid up like a Harry Potter character, why would you dress him up like an owl?!?  There's Harry, the obvious choice, or any number of other male characters to choose from.  Hell, even Voldemort would be better than this?  "Hey, Billy, what are you supposed to be for Halloween?"  "My Mom made me be this stupid owl.  I'm going to spend my evening delivering the mail and the Daily Prophet."

Of course, we can't leave the little girls costumes out of this.  Why?  Because, not unlike the costumes they produce for Moms (which are overwhelmingly skankified), little girls costumes border on the ridiculous, too.

6.  Frilly Sesame Street.  I can't help it, but this costume is like a combination of Cookie Monster and Toddlers and Tiaras.  Not to mention that it looks like Cookie Monster is eating the little girl's head.

7.  Bratz doll.  Okay, I've ranted about Bratz dolls before.  Doesn't anyone think that this may be too mature for a little girl to wear?  This is why I'm so glad I don't have a daughter.  She'd be wearing turtlenecks and long pants until she was 50.


8.  Lady Gaga.  I'm not sure I'd really consider her an appropriate person for a little girl to emulate, unless your idea of a bright future is wearing meat dresses, underwear as appropriate attire, and heels that resemble male genitalia.  Just saying.

9. Michael Jackson from "Bad".  "Mom, why do I only get one glove?"  Now, I'm as big of a fan of the King of Pop as the next person.  It hurt me terribly to see his, em, "legal problems" play out, because all of a sudden it wasn't as cool that I could sing all of the words to "Billie Jean" or "Smooth Criminal".  However, I have a hard time believing that your 7-year old is going to want to go as the King of Pop, much less will he even know who the King of Pop is.  After all, he died when this kid was 4.


10.  Chamber Maid.  When I was looking up costumes, this one was listed as being appropriately sized for 6-year olds.  Really, people?  You'd let your 6-year old dress up like a sexy chamber maid?  It should be noted that this website had a "Zombie Doctor" costume for a 6-year old, too, so it may just be a few bad apples.

Honestly, though, how much is too much too soon?  It makes me feel like a nun.  I personally see nothing wrong on dressing little boys and girls like little boys and girls as long as you can.  Putting adult costumes on them just seems wrong.

What's your take on this?  What were some of the costumes you saw that crossed the line?



Friday, October 28, 2011

Halloween Trauma and Why I Hate the Holiday

Here's a little confession for you...I secretly detest Halloween.

Honestly, I've never understood what the big friggin' deal was with the holiday.  I get that kids want their yearly stash of candy, but when I go to the store and every costume for a woman my age is designed to make you look like a hooker, well, I'm not too impressed.  Let's face it, I don't exactly have the body anymore to pull off the "sexy pirate" look.

My distain for Halloween goes further back than my recent inability to picture myself in a costume designed for a 21-year old.  No, let's go back to the early 90s...think 1991...when I was 9.

I forget what I was that year.  I do remember going Trick or Treating with the same group of neighborhood kids that filled my afternoons and summers with the various activities of kid-dom.

My street seemed to be the place to go for candy.  Some of my friends may remember the "Haunted House" at the end of the street.  For what reason we named that house as such, I am uncertain.  However, it was what it was and we always approached that house with caution, if at all.

You'd think that this would be the scene of my turn on Halloween, but no, it wasn't.  It was a few doors down at one of my friend's houses.

We went up to Trick or Treat.  Her older teenaged sister was hiding in the bushes.  When she jumped out to frighten us, I was so scared that I ran all the way down the street until my legs gave out and I fell down.  The thing I won't ever forget is the sound of my friend's mother laughing at me as I ran.

I didn't have a word to put to it at that point, but I know now that I suffered from almost crippling anxiety at times in social situations.  Halloween was a bit rough for me anyways, so being scared half-to-death did little for me or my self-esteem.  These were still the days in which I wasn't always labeled as socially awkward, but those days were rapidly coming to an end.  I was just kind-of different.

After that, I didn't want to go Trick or Treating ever again.  Those magical days of hunting for candy ended before my 10th birthday.  I spent every Halloween afterwards at home, handing out candy to my peers, with a knot in my stomach from the anxiety of it all.

That bit of anxiety over Halloween has stuck with me ever since.  I'll go to parties, if I have to, but I never dress up.  I've always tried to keep the decor in my house as more "Fall-themed" and less "Halloween".  I try to make the holiday as cutesy as I can, because I don't want other children being scared like I was.  I try to hand out the best candy.

Really, I don't worry too much about Jack because A) he doesn't really get the idea of Halloween, so we do it more for the exercise and less for desire, and B) we only take him to the houses of a select few who we know will understand that he's not going to say "Trick or Treat" or eat candy and who just want to see his precious face.

So, to those of you who may be the ones who contemplate scaring the daylights out of a child this Halloween, I'd ask you to reconsider.  It may be funny for you, but the experience may forever destroy the joy of Halloween for that child.  Find other ways to enjoy the holiday that do not come at the expense of others.

Thursday, October 27, 2011

Feeding Your Kid's Obsession

Jack's latest obsession is letters.  He knows most of his letters, which I find incredible.  He can identify an "A" from a mile away, but he can't tell me what he wants to eat or if he's even hungry.  Go figure.

I'm sure that some people will disagree, but I believe that all autism parents probably feed their kids' obsessions.  Why?  Because we long to connect with our children so badly and see their faces all aglow that we'll do anything - absolutely anything - to make them happy.  We've bought Thomas the Tank Engine movies the day they are released.  I go out of my way to keep him from melting down.  We build extra time into everything so that we can brush Jack and handle his difficulty with transitioning and meltdowns.

So, it's little surprise that when it occurred to me that Jack was officially obsessed with letters that I went out and bought a set of foam letters.  However, we quickly discovered that Jack can chew through foam letters, so my mission shifted to finding letters that Jack could play with, but which were also durable enough to withstand a few run-ins with Jack's teeth.

Of course, there were no such letters to be found.  With my newfound confidence in my crafting abilities, I set out to make him a set of fabric letters.  Yes, I am sewing.

I've only finished the first 7 letters, which leaves a mind-boggling 19 to go.  For those of you who have letter-loving and letter-ivorous children (your kids eat letters, too), here is how I made (and am still making) durable fabric letters for Jack:

Materials Needed:

  • 4 Solid-Color Fabric Quarters (Any color will do, I did bright primary colors, but you could definitely do pastels for a little girl)
  • 1 Yard of Print Fabric (I chose flannel for a texture contrast and softness, but you could do any material)
  • 8 Felt Squares (I chose a blue, but just choose a color that coordinates with your fabrics)
  • Spool of Thick Craft Thread (I used white, but any contrasting color to your solids will work)
  • Appropriate Needle(s) for your Thread
  • Fabric Scissors


Directions:

  1. Layer the fabrics by putting the print fabric on the bottom with the print face-down, then two squares of felt, and finally one of the solid fabrics on top.  Repeat for each solid color.  I then cut the "sandwiches" to the size of the felt squares for ease of handling.
  2. Trace letters (or simply cut, if you're that talented) on the solid fabric and cut through all 4 latyers to cut the fabric out.  If your felt squares are the same size that mine were, you should have room for 7-8 palm-sized letters in each square (though you'll only need to make 6-7 per square).  Don't worry if the edges look rough, we'll clean them up later.
  3. For each letter, sew along the open edges.  Remember, you may have open edges in the middle of your letter, too (like the inside hole in the letter "A").  Leave a bit of room between the stitch and the edge so that the stitch is distinct and you can trim the edges of the letter to clean it up.
  4. Taking your scissors, carefully trim the edges that you can (don't get too crazy, I'm all for the "homemade" look) so that the edges are smooth throughout the layers.
  5. Repeat for each letter.
The finished product!  1 of 26, at least.
After finishing the first few letters, I handed them off to Jack.  They were a big hit!  Sure, he was visually stimming and scripting with them (running through Super Why lines), but he liked them.  I tried to get some pictures, but when I pulled the camera out, he dropped the letters and froze.  So, I took this instead:

Ignore the bizarre look on our faces.  We were looking
at letters.  
Later, when I showed Jack the above picture during Floortime, he kept saying "Mommy" while looking at it.  : )  However, when I pointed to him in the picture and tried to get him to say who it was, he'd either grunt angrily and swat my hand away or he'd be silent.  Not too certain that he gets what he looks like, or that his name is "Jack".  On a related note, cameras are cool Floortime props.  For a kid who won't look at your face head-on, they'll sometimes look at a picture on a camera or your reflection in a mirror.  Cool Floortime trick of the day.

Then, we were chewing on our hands.

I think that for special needs kids in particular, we as parents have to get a bit creative with toys for our kids.  Jack has a house full of toys that he's never touched.  We've finally resorted to the fact that he's still in the infant toy stage if you're thinking in terms of conventional toys.  Realistically, the best toys for him may be ones that have some sensory element to them.  Since he visually (and verbally - yay for talking!) stims with letters, there's definitely a sensory component here, or at least I believe there is.

We're in the process of redoing Jack's therapy room to include more sensory elements.  Many will have to be homemade because A) it's not something that is sold as a "toy" for children, or B) if it's labeled for special needs, it automatically adds about $50-$100 to the price tag.

I'll post more about the sensory room as we complete various elements.  

I'm not going to worry about feeding my kid's fixations for now.  He's happy.  Isn't that what we all want for our children?

Wednesday, October 26, 2011

Going Rogue

If only it were that easy.
Author's Note:  This was going to be a two-parter, but since I neglected to post Part One yesterday, you'll get them both lumped into one big post.  Enjoy!

Dr. DP and I agree on a lot of things.  We agree that Floortime is the best way to teach a child to relate, communicate, and think while giving the child the most important aspect of the picture - desire and intent. We believe that traditional therapies - like speech, OT, and PT - are the keys to helping a child with a developmental disorder progress along their developmental path.  We don't really subscribe to the biomedical aspect of treatment, but there are aspects of it that we admit do work and that children like Jack are likely affected by environmental factors in ways different from the rest of us.  We believe that children like Jack have a fundamentally different neurology than the average neurotypical individual.

The one thing we don't totally agree on - mainstreaming.

Dr. DP believes that children on the autism spectrum need to be exposed to typically-developing peers in some type of mainstream activity.  At the time of Jack's diagnosis, we had enrolled him in mainstream preschool during January registration, optimistically thinking he might could progress to the point of handling it.  Dr. DP suggested that I keep Jack in the preschool until he entered special needs pre-K the day after he turns three.  Luckily for us, the preschool we had chosen didn't so much give me a choice to keep Jack in the program, but immediately said that they were refunding our tuition and deposits and that their program wasn't a good fit for Jack.

So, we stayed with Gymboree.

Gymboree has always been a challenge for Jack.  It's too much noise, too much movement, too much visual stimulation.  Even though Jack is the oldest in his class by about ten months, the other kids are more communicative.  They are beginning to play interactively.  They engage each other and their surroundings appropriately.  They listen and imitate the teacher.

Jack sits in a corner and spins a bucket.

He's been in Gymboree for two years, since he was six months old.  He's always been anxious about it.  I've kept with it all this time because A) I thought his issues were from not being around same-aged peers (which isn't the case, as he has been in Gymboree for two years with no social improvement), and B) after his diagnosis, we were told to have him do a mainstream activity, so I did.  I didn't want to go against Dr. DP.

However, after six months of therapies, programs, and Floortime, Gymboree isn't any easier.  If anything, it's a bit harder.  The older Jack gets, the more apparent it is to us and others that he's different.  If it's hard for him to being in that sensory nightmare of twelve other toddlers, it's torture for me to see how behind he is.  How the sensory input bothers him so much.  How he doesn't talk like they do.  How he can't play with the equipment because his little body can't quite execute these movements.  How he tunes the other children out and, increasingly, they're starting to tune him out.

The opportunity was presented for us to join a special needs play group.  It would mean giving up the only mainstream activity Jack was doing.  I asked everyone's opinion on it, from Jack's SLP and OT, to his special instructor, to the developmental psychologist who's training us in Floortime techniques.  All said the same thing - mainstreaming is too much for him right now.  There will be time in future years to mainstream him.

So, I'm going rogue.  I pulled Jack out of Gymboree this week.

It was bittersweet.  Gymboree causes him anxiety and I want to alleviate that.  However, the thought that I was giving up a piece of normalcy, even though it was by no means "normal", was difficult to bear.  That's not fair to Jack for me, or anyone else, to push him into an environment in which he will not thrive and grow.  He simply has a different sensory system than other children.  He has severe social delays.  He has hypotonia and dyspraxia and expressive/receptive language disorder.  He needs an environment tailored to his challenges to help him thrive.  One day he'll be better equipped to handle the challenges the rest of the world will throw at him, but that day is not today.  Or tomorrow.  Or even next year.  It's when Jack is ready.

That's okay.  I fully believe he'll be mainstreamed at some point in his future, but I won't do anything or put him in any environment that will not help Jack be the best Jack he can be.

Entering class yesterday, our last day, was difficult.  Parents in his class have one of two reactions to Jack.  They either A) overly praise him, because they know something's "off", or B) they stare at him like they're afraid he'll lash out at their kids or infect them with something.  I promise, autism isn't contagious.  There were a couple of the "staring" parents there yesterday, so it made it easier for me to say that this wasn't the right place for us.

Driving home, I cried a bit.  In the end, I'm at peace with our decision.  Sure, I was nervous about going against what Dr. DP recommended, but ultimately Jack, Brian, and I have to live with our decisions.  We know what's best for our family.  Maybe, I'm starting to gain more confidence to see what does and does not work for my son.

Monday, October 24, 2011

Unstructured Time


Foam letters equal hours and hours
of fixation/fun.

“Then it comes to be that the soothing light at the end of your tunnel is just a freight train coming your way.”  ~ Metallica, “No Leaf Clover”

I’m sure that I’ve mentioned before how much our household revolves around routine…very, very predictable routine.  There is a certain order to our days that, for the most part, we can’t deviate from without bad things happening.  By bad things, I mean meltdowns upon meltdowns upon meltdowns. 
Jack simply thrives on routine.  I could probably write out a schedule for you down to the 15-minute mark for Jack’s day.  It’s not that changes don’t happen – they do – but they take quite a while to get used to as a part of the new “routine”.  Let me put it this way, Jack still fretted every time we got to the therapy clinic until just a month or so ago, and we’ve been coming for 6 months.

Hell, we’re approaching another change, as we’re dropping Gymboree for a Special Needs Play Group and moving speech therapy to an hour later each Tuesday, I expect those changes will take some time, too.

Today, I speak of more subtle changes.  You know how a perfect weekend means doing nothing?  It’s my ideal.  Staying at home, doing what we want.  Nothing is more soothing to me.

That’s not the case with Jack.  Unstructured time makes him nervous.  Weekends get tricky, because it’s harder to fill days that aren’t filled with therapy.  We fit in Floortime on the weekends, but there isn’t the hour or two of clinic therapy like we have during the week.

So Saturday afternoon when we had just had a morning of unstructured time, it should have been no surprise to me that my little guy would be on edge.

Sometimes, I need that reminder.  Life is different.  I have to be more mindful of everything, from sensory stimuli to time-management to the arrangement of English muffin squares on a plate (yes, it matters).

Sure, I wish I didn’t have to think that much on a Saturday, but I love Jack more than my heart can even contain.  So, I’ll do it.  I’ll structure weekends for him.  Hell, I’d move mountains if it’s what he needed.

We made it through Saturday and Sunday was less stressful for Jack.  We tried to keep him busy, and a new set of foam letters definitely helped (I think he played with them for more than 2 hours yesterday).  We are doing more brushing, more joint compressions, and more rocking…and that’s okay. 

We’ve got coping mechanisms that we can use as a family.  So here’s to a new week and the return of structure!

Friday, October 21, 2011

Six Months Since "D-Day"

I woke up this morning to what has the promise of being a perfect day.  Jack's special instructor is out-of-town, so we have the pleasure of a very rare therapy-free day with the exception of Floortime, but that's a daily given in our household.  We're still in our pajamas.  What a blissful morning.

Upon letting Mason out to walk, I noticed that it is the first morning that I can see my breath outside.  Fall is upon us.

Once I came in and got breakfast ready for Jack, I turned to the calendar and saw the date - October 21st. No big deal.  It's my Dad's birthday (Happy Birthday, Dad!).  However, the date struck me as something else entirely.  It is exactly 6 months to the day since Jack was diagnosed with PDD-NOS.

I'm not sure why I remembered that, but I did.  It was a gut-wrenching day, but one in which we felt a new resolve to tackle autism head-on.  I started calling therapy clinics the next day.  I was going to do whatever it took to help my son.

In a way, I'm in awe of how far we've come.  We've all changed; it's changed our family forever.  On the other hand, we're reminded of the journey ahead and how far we have yet to go.

Jack's OT had mentioned earlier this week that I should video him every 6 months so I can really see the progress.  I can tell you unequivocally that I can see the progress right now.  I can see new challenges, but I can see initial mountains conquered as well.

So, on my blog, I've decided that every 6 months, I'll make an inventory of where Jack is at that point, how far we've come, and how far we have yet to go.  I'll try to organize this in as logical of a manner as possible and use it as a template for future inventories.  So, here goes:

Speech and Language:  I start first with this because it's what people tend to ask me most often about Jack.  "Is he talking?"  Well, is Jack conversational?  No.  Does Jack use some words?  YES!  When Jack was diagnosed 6 months ago, my answer would have been no.  Now, he's starting to say some words.  The clarity with which he speaks has greatly improved.

Right now, Jack's appropriate use of language varies from day-to-day.  Some days, he uses no appropriate language at all.  Others, he'll have a rock-star day and we'll hear a bit.  He uses single words to "label" things at home most commonly.  Just today, he picked up a toy car and said "Car".  He is starting to use "more" and, more commonly, "all done" as his forms of "yes" and "no".  He'll also use "hi" and "bye bye" as "yes" and "no"-type words.  At home, he's just starting to pair "more" and "all done" with another word, but we don't hear any other spontaneous word pairings yet.  Even with these, he seems confused at times.  For example, he'll say "more Cheerios", but when we offer them, he acts like "You idiot, that's not what I was saying!"  So, I think that we've got a ways to go in terms of him understanding what he's saying.

He doesn't seem to understand what we say most of the time at home, but I'd say that this is improving. Just the other day, I said "Give to Mommy" when he picked up a piece of trash, and he did it!  He's not done it since, but it is a start!

With regards to non-verbal communication, which is more important than you might think, we've made some minimal progress.  Jack can clap, but only when prompted.  He first clapped when he was about 18 months old, but doesn't do it spontaneously.  Since Jack's diagnosis, he has learned to wave, but again, it's never spontaneous.  Still no pointing, but I'm less concerned about this than before.  Sure, he can't do it, but we're working on other things.  You've got to pick your battles.  There is really no other gestural communication, though Jack does occasionally hold his hands up to get picked up.

Jack is just starting to use spontaneous language.  We still almost never get any spontaneous communication of Jack's wants and needs.  A lot of his language is prompted.  Most of it is still echolalia.  At home, we hear a constant run of Jack's phrases - like "And it made the Western mail exactly 8 hours late", "Let's zap it in the sentence", "Casey Jones, Casey Jones, Casey Jones are you ready?", and "How now brown cow?"  We still hear a lot of jargon, too.  Although this isn't where we want the destination to be, we are encouraged that he's saying anything, echolalic or not.

All in all, I'd say we've seen awesome progress.  I can't wait for the day when I can know what's on his mind, other than Super Why!, The Brave Engineer, or Thomas the Tank Engine.

Sensory Challenges:  Still a big issue in our house.  At the time of Jack's diagnosis, we didn't think he had as many sensory challenges as we've discovered he has, but that doesn't mean they weren't there.  We just didn't know that's what was going on.  I highly recommend you read The Out-of-Sync Child (see my Books You Must Read section for more).  It's the Bible of Sensory Issues.

Recently, Jack's had a lot of tactile issues, but I'm encouraged that he's done things like "play" in his food at speech.  However, we haven't been able to get him to do it at home.  I've been really trying to create objects in his therapy room at home, like a bean table, to give him some tactile input, but alas, he's so defensive!  He won't touch the beans.  Things like foam, soap, and other gooey, sticky substances are also a big no-no in Jack's world.  His tactile defensiveness has made diapering, dressing, bathing, and tooth brushing an absolute nightmare.  He wouldn't even try on his Halloween costume after he touched the silky Lycra.  I look forward to the day when Jack can tell me what it is specifically that bothers him about these activities, so that I can try to modify them.

On the other end of the scale, Jack still craves pressure and movement.  We've just gotten to where we understand that he needs this and we let him move as much as possible.  I don't have any expectations that he'll sit at a table and engage in an activity with me.  I know that if I'm going to get any engagement at all, he needs to be on the move.  We're hoping to get an indoor swing soon so that we can give Jack this input he so craves without throwing our backs out.  We also do joint compression and brushing, which seems to help a teeny bit.  He still throws himself into doors and walls, though.

Lately, he's been a big chewer.  He chews clothing (he sucks on sleeves and the bottom of his shirts, too, which makes them all icky and soaked).  Just about everything goes in his mouth.  You know how babies put everything in their mouths?  Jack's just now doing this.  I'm thinking there may be some sensory component to this, but maybe not.

Ultimately, I think that the progress we've made is that we're better able to understand why he reacts the way he does to certain stimuli and we're more compassionate about helping him cope or removing the offending stimulus.  I'm confident that as time goes on, we'll find more and more discreet ways to help him cope.  He won't be 20 and still need me to hold him and rock him in the middle of a public place.  He won't chew on Pez dispensers when he's 18.  We'll find more subtle ways to give him that input.

Behavioral Challenges:  Like with his sensory challenges, we didn't quite realize the extent of his behavioral issues at the time of his diagnosis, but that doesn't mean that they weren't there.  We just turned a blind eye, I think.

We still struggle with behavioral challenges.  Some are a factor of being a 2-year old.  However, I'd say that many of Jack's reactions to situations are far exaggerated because of his autism.  The trigger might be a typical 2-year old trigger, if that makes sense.  For example, he may be mad because he doesn't get his way, but the resulting tantrum will last well over an hour.  Normal trigger, abnormal response.  That's why I get so burned when people say "That's the terrible twos for you!", because a) the "terrible twos" typically come around 18 months (that's not me saying that, it's the developmental psychologist who leads our Floortime training), and b) you try living with a two or more hours of meltdowns daily, from which it is difficult to bring Jack back to a regulated state!  Sometimes, the trigger is entirely sensory.  For example, we've been having massive (we're talking upwards of an hour) meltdowns triggered by Jack's late-afternoon diaper change.  Definitely a sensory trigger there, but then he can't come down from that amped-up state.  This is the aspect of parenting Jack that makes me want to bury my head in a pillow and cry some days.  Jack's current record for longest meltdown stands at 1 hour and 45 minutes.  I don't want to attempt to break that record.

In terms of stimming, I think his stims have evolved over time, but I think that as we go along we're more aware of what is and is not a stim.  When he was diagnosed, we knew that Jack flapped his hands sometimes.  He actually does it more now, but what we didn't realize when he was diagnosed was that his primary stims were things like moving his hands and fingers around in front of his face and verbal stims.  If you were to come to our house today, you'd hear a pretty consistent soundtrack of Jack humming.  Nope, it wouldn't be an actual song, but just a one-or-two-note string of humming.  It's a stim.  He also paces.  Last week, when I had some family over at the house, he got overwhelmed and started pacing back-and-forth in front of the support columns for the deck, cutting his eyes at the columns.  That's a stim.  He still flaps his hands (more so now than before), but it's when he gets really excited, like when watching a toilet flush (which he loves to do) or watching the garage door open or close (another visual favorite).  We see others, but those are the ones I think about most frequently.

With regards to stimming, I think that we realize the value of it at this point.  Now, is it good for him to engage in behaviors that people will identify as unusual?  Not really, but it helps him self-calm and stay regulated.  I'll take that over the alternative - a meltdown.

He's still very rigid in his routine and ritualistic with feeding.  We deviate from those routines and bad things happen.  Transitions are still a challenge.  I think that he gets used to a particular new components of his routine; for example, going back to the therapy gym at the therapy clinic used to be full of tears and drama, but now, not so much.  He still has difficulty with transitions, but we know better how to help him through the transitions.  He still needs a lot of assistance and really can't self-regulate, so he needs our help to do that.

There are some new challenges.  Jack has begun to "self-injure" by scratching or biting himself until he breaks the skin.  I'm not certain that he experiences pain the way we do.  The way that he throws himself into walls and doors at full-speed, I'd argue that he is under-reactive to pain.

He's also become increasingly more aggressive.  He hits us a lot (me in particular), and coupled with his echolalia, he'll pair the hitting with "No hit!" said with inflection that sounds shockingly similar to my own.  What can I say...he hears "No hit!" a lot these days.

Jack also has started bolting away from us in stressful situations.  He won't look to see where we are; he just runs.  That's really scary to me, because I'm afraid that I'll turn around one day and he'll be gone.  He's still not good about walking independently holding our hands, but he's getting too heavy to carry.

Discipline is a challenge, because Jack lacks the ability to understand "time out" or any other discipline methods.  And no, I'm not a spanker, and the people who suggest that I spank my child to "cure" him can eat poo.  Really, my form of "discipline" is to help Jack down from a meltdown, which takes time, and to redirect him.

Self-Help Skills:  We've seen minimal improvement, with slight declines in some areas.

With feeding, Jack still basically eats the same repertoire - English muffins, cut-up cereal bars, yogurt with smooth mix-ins, pureed soup, and Cheerios.  We've added applesauce (not a favorite at all) and peanut butter (more of a favorite).  His SLP has introduced pretzels and occasionally I can get him to eat one or two dipped in peanut butter.  The addition of peanut butter has been a biggie, because it's so full of fat and calories and he could stand to gain some weight.  I have the opposite problem and am more than willing to donate to him.  Recently, we've focused more on increasing caloric intake, and I'm okay with that.  He's vomiting less as a result, which is an awesome thing.

Jack is self-feeding less now than he was before he was diagnosed.  He'll self-feed Cheerios, but little else.  He has never been able to use utensils, but at one point he could finger-feed better than he can now.  I believe there is a sensory component to this and that he doesn't like the sensation of the food on his fingers (Cheerios are okay because they're dry).

While other kids Jack's age are starting potty training (or trained, lucky parents), we're nowhere close to starting that process.  I'm honestly not even thinking about it in the next 6 months unless Jack shows particular interest.  He hasn't at all.  He still isn't aware of when he has a dirty/wet diaper, so we won't have much success until he's aware that he's even gone to the bathroom.  He almost constantly has a diaper rash.  Most kids Jack's age aren't still on a pureed diet, so their "output" is more substantial than Jack's, so his diet contributes to this problem.  For those of you who aren't parents yet, you too will  become very comfortable with discussing BMs  in your blogs.  I promise.

Jack can't do any other self-care tasks.  I read recently (and I need to stop looking at milestone lists) that kids Jack's age can wash their hands and brush teeth with assistance.  Nope.  Not there.  He can't dress or undress himself.  He can't even raise or lower arms to assist with dressing or bathing.  We do it all, but I'm okay with that for the time-being.  Other personal care tasks, like hair cuts and doctor's appointments (of which there are a lot), remain a significant challenge.

In this area, again I think our (mine and Brian's) expectations are what have improved.  We promote independence, but we are realistic about what he can and can't do.

Social Challenges:  This is one of the things that most people think of when they think of autism.  We've seen very little improvement, but we've seen some!  I get the feeling that this is going to be the area Jack will struggle the most with for the longest.

The biggest improvement we've seen is that Jack is gaining environmental awareness (awareness of his surroundings and others in them).  Now, he doesn't consistently seem to have environmental awareness.  We see declines with increased stress (the more noise/sensory stimuli, the less awareness).  When he's in the sensory "zone", he does seem more aware, but typically, Jack doesn't notice others in his environment.  It's like they get tuned out.  He's still very much in his own world and enjoys being there.

Everyone thinks of eye contact when they think of autism.  Jack will give very brief, intermittent eye contact.  He will actively avoid eye contact if you try to get him to look at you.  In the status quo, that hasn't changed, but we've learned some tips and tricks to illicit eye contact.  For example, many autistic children can't look you in the eye up close, but it's easier from a distance.  It's also easier to look people in the eye in a mirror instead of head-on.  With Jack, we get temporary increased eye contact after/during sensory activities, like swinging or roughhousing.

Jack still doesn't respond to his name hardly ever.  Every few weeks, I'll try to note how many times it takes for me to call him before he'll respond.  Right now, I'd say that 90-95% of the time, he doesn't respond.  I can call his name 10-15 times and get one brief glance.  That's still about the same as it was before.

When making requests, he still tends to grab our hands and use them as "tools" to do the things he wants done, like he'll put our hand on a door knob to open a door.  He won't look us in the eye or say "open".

Jack still doesn't do "joint attention", which is drawing your attention to an object of interest.  Think about how toddlers show you objects.  They don't need to use words, but they want to share with you their interest in something.  Or, a toddler will point to something to show you, or point and say "What's that?"  Jack has never done any of these things.  Still no pointing.  It's like it doesn't occur to him to draw attention to something he likes.  Nor will he "follow a point", which means looking at something you point to.  He doesn't do that.  In fact, I think it ticks him off when I point at something.  Maybe it's because I'm constantly testing him with this, waiting for the day in which he'll look.

Jack still doesn't interact with children at all.  Social situations cause him a lot of anxiety, which I think is from the increased sensory stimuli from the addition of more children in his environment.  He tends to run from children and other people, or if he can't run, he'll freeze and just shut down.  He won't move.  Other children, when they are fewer in number and quiet and thus don't overwhelm him from a sensory standpoint, tend to get treated like objects.  He'll move past without regard to their existence.  He can be within inches of a quiet child and not acknowledge them at all, either through visual regard or otherwise.  I think we'll be working on that for some time to come.

He doesn't parallel play or do any interactive or imaginative play.  We're still working on appropriate play.  Jack still spins things or lines up toys.  He still runs trains back and forth in front of his face.  He will fixate on objects.  A recent favorite is ripping off the door of the refrigerator on his play kitchen (which he never plays with) and dropping it repeatedly on his table.  He'll do this with paper towel rolls (another recent favorite) and toilet lids (ours close slowly, so he tends to space out watching them close over and over again).  With a lot of facilitation, we can get him to roll a ball to one of us.  We only close 2-3 circles of communication this way, though.  We've got a lot of work to do in this area.

In terms of Floortime, we can get about 3-4 circles of communication consistently, I think.  Granted, I'm pretty loose in what I consider to be a circle of communication.  This is an improvement.  We still struggle to engage Jack and, more frequently, keep him attending and engaged.  Just trying to get Jack to pay attention to us and interact with us is a challenge.  He defaults to being in his own world.

I think this is something that parents of typical children take for granted.  They're just used to their children giving them long, loving gazes, affection, and attention.  In fact, you hear parents complain that their kids won't leave them alone!  This morning during Floortime, Jack acted like I wasn't in the room.  I got 1-2 circles of communication before he'd disengage.  He doesn't call to be let out of his crib in the morning.  Before he was on melatonin, he'd happily sit in his crib for a couple of hours before falling asleep.  He didn't want to be rocked.  He didn't want help.  The developmental psychologist at Floortime training this week mentioned that the kids that concern her are the ones who are happy to be in their cribs by themselves and don't bug their parents to let them out or come be with them.  My kid is one of those.  She said that she can't wait for the day when Jack bugs me for attention.  Neither can I.

I can't wait for the day that I feel like Jack loves me.  I can't wait for the spontaneous, unprompted affection.

We're seeing progress.  Through Floortime, I think we'll continue to make baby steps with engagement.  I am hopeful that special needs Pre-K will help, too.

Motor Challenges:  Jack still has gross and fine motor challenges.  Dr. DP diagnosed him as also having dyspraxia and hypotonia, but I believe that therapy is going to help both.  I don't have as much to say about this area, because while Jack has challenges, they seem minor to me compared to some of the things that affect us more on a daily basis.

No, Jack doesn't move like other kids his age.  That's obvious if you watch him in Gymboree.  However, it doesn't concern me as much.  Do I want to get it addressed?  Absolutely.  Do I wish he could jump and climb like other kids and that his legs wouldn't buckle from underneath him?  Sure.  It would make his life easier, but the gross motor issues just don't impact us the way that other things do.

The same with fine motor.  Do I wish he could be more independent?  Absolutely, but I guess I've just gotten used to having to do everything for Jack.  Is that a good thing?  Probably not, but it's reality.  I'll keep doing whatever I can to strengthen his motor abilities.

Jack still can't do puzzles.  He lacks the fine motor skills to color, though he's recently taken to tapping on surfaces with crayons and capped markers in a very rhythmic manner, but it seems like a stim given the way he looks at the writing implement (he cuts his eyes at it...a tell-tale sign of visual stimming).  He's just gotten to where he can build a tower of big, chunky blocks at home with some assistance (one of us holding the base of the tower to keep it upright).  He still doesn't have the strength to push down on his Mega Bloks to build with them.

The thing we notice the most is his motor planning challenges.  Jack has to be assisted with a lot of motor tasks because he just can't figure out how to do these things independently.

I hope to be able to report that in 6 months Jack is jumping.  That's his PT goal and his therapist thinks he'll do it.

My Attitude:  I think it's worthy of noting where my attitude lies at the moment.  When Jack was diagnosed, I felt a resolve to get him help quickly and I put my sadness aside.  Once the evaluations rolled in and I read how delayed Jack was, I felt despair.  How did I not see it before?  It was a low point.

Evaluations don't get easier, but I just am getting more used to it.  I have also abandoned the idea of a cure.  I'm accepting that this is our lives.  Jack will progress.  My hope is that one day his autism won't disable him the way it affects our lives now, but he'll always be autistic.  There will always be challenges.  I'm okay with that.  Jack's OT at one point reminded me that this isn't a quick-fix and that we're in it for the long haul.  She was right, and I needed to hear it.  That statement made me sad that day, but later I felt so grateful that I had heard it.  I needed to hear that.  I needed to be reminded that progress, while gradual, will continue to happen.

I don't feel the need to hide that my child is autistic.  He's wonderful just as he is.  I feel like I can wear my puzzle piece necklace and embrace this community that has now become my home.  I didn't feel that way before.  I feel that way now.

I've met so many wonderful therapists and parents in this process.  We all have a common bond.  I feel at home amongst these individuals who just get it.  Like our OT who reminded me that I'm in it for the long haul.  Our SLP who reminds me to just enjoy being a mom and not get burned out.  Our PT who tells me weekly that I'm a good mom.  Our SI who validates my feelings.  The mom who told me that she too lives in a house of glass and feels afraid to move for fear that it will shatter.  The former co-workers who I didn't know well before, but whom I now feel a bond because our kids all have special needs.  The countless parents whom I've talked to that can empathize because they've been there or are there right now.  I thought that this would be an isolating place, because some of my friends don't call or talk to me as much, but the new friends I've gained and support I've found more than compensates.  I've found a community that is always willing to listen, empathize, and share a story or two.  We're the same.  That's a good thing and a good place to be.

So, that's a lengthy and probably incomplete snapshot of Jack right now.  We have made progress.  We have a ways to go.  We've encountered new challenges, but all of Jack's therapists told us to expect as much.  We're becoming more okay with the ebb and flow of gradual progress.  Thanks to Jack's fantastic therapy team, and the doctors/specialists who work so hard to help him, we're seeing progress where prior to his diagnosis we saw none.  I absolutely believe that Jack wouldn't be where he is today if not for the hard work of his therapy team.  I think Floortime has benefitted him, too.

Here's to the next 6 months and the progress to come!

Thursday, October 20, 2011

Llama Llama Red Pajama

Picture twelve 30-40 year-old adults sitting in a circle, listening to a grandmotherly figure read aloud from a children's book, Llama Llama Red Pajama.  Well, you've just pictured Floortime class from this week.

I've raved about Floortime before, but I'll keep singing it's praises.  Here are the reasons why I love Floortime therapy:

1. Unlike some behavioral therapies, it's not enough in Floortime to teach a child to do XYZ in a certain situation, but it's goal is to teach your child to interact, relate, and think for the joy of it.  Your child can connect with the world because he wants to connect.

2.  Unlike most therapies, it is parent-provided.  If you're strapped for cash, or want to add extra therapy hours without the expense, it might be one way to go.

3.  It forces you to meet your child where he or she is, at their level.  Especially for us parents who sometimes overshoot our child's developmental level (guilty here), it reminds us that our children are going to do what they are developmentally ready to do.

The premise behind Floortime is that there are developmental levels, steps up a developmental staircase, if you will.  Your child has to master the lower steps before success at the upper levels.

Jack never did this.  I remember distinctly that Jack wouldn't look at me when he was feeding, which all of the baby books said that he would.  Instead, he looked at the ceiling, or over my shoulder.  I remember mentioning it to our pediatrician and family members, who all told me not to worry.

If you think about it, regulation and being able to attend to another person are critical building blocks for interaction.  You have to stay calm and focused to attend to another person.  You can't interact with that person until you can attend to them.  We're still working on that.

So, we do things like continuously attempt to engage Jack and require a response (not necessarily the correct one, but any response) in our interactions.  This is exhausting.  It takes time.

But it's worth it.

Why?  Because Floortime doesn't assume that because Jack is autistic he can't (or won't one day) do the following:

  • Love.
  • Empathize.
  • Be able to think abstractly.
  • Communicate in a meaningful way.
  • Think creatively.
Not a guarantee.  In fact, most children on the spectrum don't master all of this.  But some do.  There exists that potential in each autistic child.  That brings so much hope.  

Sure, I don't expect a cure.  Really, I'm not even looking for one.  There are things about autism that I firmly believe give Jack a place in this world.  He is so hyper-focused on what he loves to do.  Maybe he'll be an engineer?  Maybe he'll change the world?

But does that mean that I don't want to give him the tools to navigate in a world in which he was wired differently than everyone else?  Absolutely not.  I want to help Jack learn to operate in our world, instead of within his own little world, because that will make his life easier.  For him to be truly independent one day, he'll need to be able to go the the store without melting down.  He'll need to talk to others.  He'll need to learn to cope.

There's hope that in the future children like Jack will have the potential to exceed expectations.  It'll take years of hard work on the part of Jack, us, and his therapy team, but I believe in him.

If any of you have any questions about our family's experiences with 6 months of DIR/Floortime, feel free to ask!  I'd love to share how this program fits into our treatment plan for Jack.

Wednesday, October 19, 2011

A Most Sincere (and Sensory) Pumpkin Patch


Pumpkin patches = Too much sensory input.

Author's Note:  For those of you who wonder how I'm doing on my weight loss, I'm still doing it!  My weight is 164.4 lbs.  I've lost 15.6 lbs. so far!

Normalcy.  What does it mean, really?  I mean, when you decide to become a parent, or accidentally become one, you never in your wildest dreams imagine anything other than the typical milestones of family life.  You see your life making cookies, taking your kids to sporting events, going Trick or Treating, and enjoying a yearly visit from Santa.

Going to the pumpkin patch certainly falls into that category.

Now, this wasn’t our first time at the pumpkin patch.  We took Jack when he was about 7 months old with little fanfare.  We took him again last year at about 19 months with much more drama.  He screamed.  The look in his eye was different.  We chalked it up to any of the usual suspects (“Maybe he’s tired?  Hungry?”), but it was a day full of meltdowns.  That was just before we’d started to suspect that something wasn’t right with Jack.

So this year, at the ripe old age of 2.5 and armed with the knowledge of our child’s challenges, we headed off for the pumpkin patch.  Why?  Because it’s what families do with their kids.  And we were going to stretch for normal in any way possible, damnit!

We planned our trip to set us up for the most success possible.  We went about 2 weeks before Halloween.  We went early in the day.  Indeed, upon arriving at the pumpkin patch and paying for parking (which we’ve never had to do before…grrr…), we noted that there were far fewer people there than had been there when we had gone in previous years.

The first part of the whole experience was the hayride to the patch.  Now, the hayride itself was great.  Waiting in line…not so much.  Like with any vehicles, Jack seemed to enjoy the ride.

Once we got to the patch itself, it went downhill from there.  The hayride lets you off in a field of baby pumpkins.  Every year, we get Jack a baby pumpkin for his room.  As I scanned the field, I saw happy children who were clearly much younger than Jack gleefully grabbing pumpkins left and right.  I knew we’d have to demonstrate for Jack what he needed to do, so Brian bent down and picked up a pumpkin and handed it to Jack.  Jack promptly pushed it away.  I could tell that this whole concept wasn’t computing with him.

"I'm not noticing the pumpkin.  I'm not noticing
the pumpkin."
We kept trying to navigate through the field to get a baby pumpkin, but alas, no luck.  Eventually, Jack sat down, so I tossed a pumpkin in front of him and took a quick picture.  After all, I wanted to have proof that my child did a semi-normal activity.  Jack didn’t notice the pumpkin at first, but once he did, he threw it.  He wanted nothing to do with them.

Afterwards, we moved across the field to the full-sized pumpkins.  The concentration of people was much greater in this area, and we could just see Jack’s anxiety rising.  Any time we’d let go of his hand for any reason, he would take off towards an open field, but would run into the path of the hayride.

The bolting is one of the scary aspects of Jack’s autism.  It scares me to no end to think that he doesn’t have any regard to where he is in proximity to us, nor does he seem to care.  If he wants out of a situation, he just leaves on his own.  I’m petrified that one day I’m going to turn and he’ll be gone.  And if I call his name, he won’t respond.  That’s why our doors stay bolted shut all day.

"Get this THING away from me."  Jack demonstrating
his punkin' chunkin' skills.
Once it became clear that we’d have to carry Jack and the two pumpkins to get everyone safely out of the patch, we decided it was time to call it a very brief day.  Back on the hayride we went for the return trip.

We paid for the pumpkins and headed back to the car.  I had gotten tired of carrying the pumpkins, so Brian and I traded off and I carried Jack.  As we approached the car, the anxiety hit it’s apex, and Jack started smacking me repeatedly over the head.  It took two of us to just secure him in his car seat.  He was done.

So were we.

Jack’s special instructor has warned us that we’d start to see more differences between Jack and his peers, and she was right.  I wish he could enjoy these normal childhood activities, but he can’t without a lot of modifications.  Maybe, I need to adjust my expectations.

Tuesday, October 18, 2011

Goals


Because someone's gonna make you do it.

Anyone who is a former co-worker of mine will cringe at the following statement:

6-Month Goals

No one is immune, or so I’ve discovered.  The least of which is my 2.5-year-old autistic son.  No, he’s not being judged on how many protocols he’s pushed through to approval or where is in terms of summary reports.  He’s being assessed on his developmental progress.

No pressure, Jack.

In Babies Can’t Wait, they set goals, not unlike IEP goals, to work towards each 6 month time period.  They always ask for parental input, which I feel is such crap.  My goal?  Normalcy.  Obviously, that’s not a fully attainable goal for Jack, so I’ll settle for in the ballpark of normalcy.  As close to high functioning as we can get, how’s that?

But that’s never good enough.  They want a specific, measurable goal.  Well, if I knew what Jack could attain in the next 6 months, I’d consider myself friggin’ clairvoyant.  Seeing as I didn’t pay attention in Divination (there’s some Harry Potter references for you), I’m not great at predicting my son’s future functioning level.  That’s what the doctors and therapists are for.

So, I walk into Jack’s 6-month review in the worst place ever – the aquatics center.  Why?  Because aquatic PT is a BCW service, so our service coordinator wanted to take a peek at a session.  For those of you who read this regularly, you’ll know that aquatics tends to cause a meltdown approximately 30 minutes into his session, if not sooner. 

I was doing joint compressions and brushing like a mad woman to get Jack regulated and, thus, make a good impression.  It’s a wonder I didn’t brush his skin off.

Why was I so worried?  Because, I knew he wouldn’t meet his 6-month goal.  It was pointing.  Jack still can’t point.  I know, it’s a skill he should have mastered a year and a half ago, but alas, it eludes him.  It really doesn’t bother me at this point, because how many people, other than the doctors, therapists, and us, notice that he doesn’t point?  We’ve made some progress in other areas, so I’m pleased with that.  What’s the big friggin’ deal with pointing, anyway?  So my kid lacks joint attention at this point.  Guess what, he’s autistic, so it’s not unexpected.

But, I couldn’t shake the feeling that goals set by BCW were something that you wanted to meet.  After all, when I had reviews, if I hadn’t met my goals, bad things would have happened.  I couldn’t help but think that Jack not meeting his goals wasn’t a good thing.

Everyone wants to see “adequate progress”.  This frustrates me to no end.  After all, the thing to do with a kid who isn’t progressing is to call them hopeless and yank therapies.  Insurers actually do this.  Parents want to see their kids progress, but they also want progress so that we can continue the therapies for our kids that make that progress possible.

So, Jack’s service coordinator arrived and I felt the chunks rising in my throat.  The first question she asked, “How’s his eye contact?”

“It’s about the same.  After sensory activities, we see improvement temporarily.”  I don’t get what the big deal is with eye contact.  Everyone judges our kids on eye contact.  What about the other things they can do?

“So, is he pointing?”

Gulp.  “No.”  Dammit.

“Responding to verbal cues by pointing?”

“No.”  I just said he wasn’t pointing!

“Responding to verbal cues at all?”

“Well, not exactly.  He usually needs some visual cue to accompany the verbal one. But occasionally he responds to a verbal cue…I think.  It’s hard to tell sometimes.”  Not the answer she was looking for.  I felt the need to plead my case.  “But we’re seeing progress.  We’ve become more aware of his sensory profile, so we’re able to help him with his sensory needs.  He’s saying about 25 words, he’s beginning to label, he has a lot of echolalia,” she looks at me like, that’s not a good thing, “which Dr. DP says is promising.”  Rebound for my side.  Big smile from me to make me look better.

“Okay, let’s set his final goal for our program.”  YES!  We survived!

Luckily, his PT was willing to interject at this point and suggest that jumping would be an achievable goal for Jack by his 3rd birthday.  My child jumping?!?  I could hardly contain my excitement at that idea!

And off we went.  He didn’t meet his goals, but we made it and are entering our final 6-months in BCW.  After that, we move to the school system, which will be our home for the next potentially 18 years (he can stay until he’s 21).  Looking toward the future, I’m excited about the possibilities that lie ahead for Jack that weren’t available for autistic children when I was a kid. 

Monday, October 17, 2011

Burn Out

Finally, life calms down to some resemblance of our normal.  I hesitate to use the word "normal", because our lives are anything but that; however, we're back in our routine.  Here is all that we've done in the past 2 weeks:

  • Regular therapy schedule, including the regular 2 hours of daily Floortime, but with double special instruction as our SI was going to Israel for 2 weeks.
  • Floortime parent classes (still on-going).
  • My sister-in-law's baby shower, which I helped hostess.
  • Filing Jack's Katie Beckett Deeming Waiver application (of which there will be a post soon, I promise!).
  • Jack's 6-month IFSP review (post on that too...it wasn't a good one).
  • Brian working a ridiculous amount of unexpected overtime.
  • And the kicker...Jack has been more disregulated than usual.  We're talking daily battles with diapering, tooth brushing, bathing, aquatic therapy, the works.
So, basically, I've been doing all of the above mentioned stuff while essentially being a single parent while Brian's swamped with work.  On weeks like that, I feel like this:

"Get me out of here! I'm fine.  No, get me out of here!
No, maybe I'm fine. I'm not! Get me out of here!"
And in those desperate times, I feel like nothing would be better than this:

Pour in glass. Consume. Repeat.
Will cure (or make you temporarily forget)
days full of sensory meltdowns.
But, given that I had a decent cold for one of those weeks, the only thing I was consuming was this:

The beverage of champions.
As with all situations in which I feel a case of the "Holy Crap...help me!!!"s coming on, I survived.  We've come through and we're okay.  The applications are off.  The review is thankfully done.  The SI is off to the Middle East.  We're still here and alive, if not a little groggy and tired for the experience.

Now, I can get back to my "normal" routine of Floortime, therapy, feeding battles, rinse and repeat.  More posts to come this week than I've managed recently...I promise!

Monday, October 10, 2011

Casey Jones


"Casey Jones, plowin' through the water.  Casey Jones, plowin' through the mud.  Casey Jones, plowin' through the ah-ah-ah-achoo!"  ~ Walt Disney's The Brave Engineer


What is Jack stimming on this week?  Well, it's none other than a Disney cartoon from 1950.  You see, Brian loved this cartoon, called The Brave Engineer.  Seeing as Jack has had a train obsession from what seems to be his days in the womb, Brian thought it only natural to introduce Jack to this cartoon about an engineer named Casey Jones.

Little did Brian anticipate how much this would become one of Jack's latest scripts.

We hear little snippets of this cartoon at the most inappropriate times.  Of course, Jack approximates all of these, but we'll hear "'Tis Morning!" at two in the afternoon.  We'll also hear "How now brown cow?" at random times.  We'll also just hear a never-ending cycle of "Casey Jones?  Casey Jones?  Casey Jones are you ready?"

I think that "'Tis Morning!" is what we hear the most often.

I have to interject now and say that these repetitive phrases have always fascinated me.  They have no meaning and definitely seem to be some kind of stim.  However, why is it these phrases in particular?  Is it the rhythm?  Does he like the way they sound?  He uses this in no communicative manner whatsoever.  I would love one day to be able to ask him why he does some of these things, not just the scripting.  Wouldn't it be fascinating to know what it is about rolling a train back and forth in front of his face that is so appealing and mesmerizing?

Just one of the mysteries of autism that I'd love to be able to unlock.



Friday, October 7, 2011

The Parade and Other Fall Sensory Challenges

Brian and Jack at the parade.
Like I said earlier this week, in spite of illness, life goes on.  Life went on in the Reinventing Mommy household, despite the fact that I was popping DayQuil like candy.

It was a weekend of little reminders of the sensory challenges we face with Jack.  However, I can say proudly that while Jack still struggles with his sensory issues, Brian and I know better how to manage those challenges.  We look at these issues in a different light.

Last year, we took Jack to the local Youth Day Parade.  It was a bit rough, to say the least.  In this parade, there are several things that tend to set Jack off:
  • Fire trucks/sirens
  • Tons of kids
  • Staying still for a while
  • Noise
Last year, we thought it was just something that Jack had to learn to deal with.  Now, we know that some of it is sensory and we've learned to adapt ourselves and our activities to help Jack deal with these situations.  This year, Jack spent a large portion of the parade sitting on the ground with his back to the parade itself.  When the sirens went by, he needed to be swayed and shushed.  We gave him a bucket and helped him hand-over-hand put candy into the bucket.  Eventually, he got the hang of it, so we kept putting candy on the ground in front of where he was sitting so that he could keep doing his soothing, repetitive activity.

And it worked.  With the exception of once when a fire truck's sirens passed by, we were relatively meltdown free.  I think it is because we modified our expectations.  We didn't expect Jack to act like a typical child at the parade.  We didn't let it give us anxiety.  

We didn't expect Jack to change for us.  We changed for Jack.  That makes life easier.

Not on my kid.
The second issue we face was with Halloween costumes.  Jack was a pumpkin his 1st Halloween.  The 2nd, he was Thomas the Tank Engine.  While he would have gladly been Thomas again, his costume lasted about as long as you could expect a $15 costume to last - one day.  

So, off I went to get a new one.  I had decided on a Super Why! costume for Jack.  Like many costumes for kids, it was made of a really slick, stretchy nylon-like material.  I thought Jack would love it.

I was wrong.

The first time we tried to put it on him, he screamed the second it touched his toe.  Absolutely screamed.  So, we decided to try another time.  Nope.  Every time he sees it, he screams and flails.  All I can figure is that he doesn't like the feeling of it against his skin.

I was a bit sad.  I wanted so badly to have Jack participate in something that typical children get to do.  He can't eat the candy.  Hell, he doesn't want it.  He can't say "Trick or Treat".  The least he could do was wear a costume, and it seemed as though he wouldn't do that.

Until...I had an epiphany.  If Jack wouldn't wear a costume, perhaps we could improvise.  Perhaps, he could wear pajamas - pajamas that look like a costume.  Pajamas designed for Halloween that look like a skeleton!  And it worked.  He was absolutely fine with wearing pajamas that are identical to what he normally wears, minus the fact that there's a glow-in-the-dark skeleton printed on them.

Autism - 0.  Reinventing Mommy - 1.

So, we still have sensory challenges.  Goodness knows we still have a plethora of sensory challenges.  He may struggle with that forever, to some degree.  However, I'm proud of the fact that Brian and I are at a place of acceptance with Jack's sensory challenges and we're feeling more capable than ever to work to help Jack feel at ease in our world.  We may have to do some unconventional things.  Believe me, you get some stares when you stop to rock your child in the middle of a public place.  Jack may be wearing pajamas for many Halloweens to come.

But that's okay.  We're figuring it out.  We'll continue to figure it out as we go along.  We'll figure out more ways to make adjustments to help Jack feel comfortable in our world.

Thursday, October 6, 2011

Impact

Steve Jobs, 1955 - 2011
"...do you want a chance to change the world?" ~ Steve Jobs

Normally, I don't fall into the big-news-story bandwagon on my blog, but today I felt compelled to pay tribute to Steve Jobs, the co-founder and former CEO of Apple, who passed away just yesterday.

To many of you, he created the iPod you use while you work out, or the iPhone you're talking on, or the MacBook that's not unlike the one on which I type this post.  However, to families of special needs children, he did something far more ingenious.

"We're here to put a dent in the universe." ~ Steve Jobs


He gave us the iPod that helps our children stay regulated in public places.  He gave us the iPhone that allows Jack to escape the sensory nightmare of public places and focus on a favorite movie (right now it's The Brave Engineer) or an ABA game (like TouchTrainer).  He gave us the iPad that allows our children to connect to the world around them through an affordable augmentative communication program.

He helped give our children a voice, a means of navigating their world, and a technology that, for whatever reason, they just get.  For that reason, the entire special needs community is mourning the loss of an unlikely champion for our children.

No, the iPad wasn't designed for autistic children, but look at what it's done!  I hardly know a special needs family who does not have an iPad for their child's use.  Even verbal special needs children seem to find an outlet in this technology.  It provides a visual, tangible way for them to process information, which  is the easiest way for many of our children to learn.  No, Mr. Jobs, you didn't make iPads, iPods, and iPhones for Jack, but he may get more use out of them than any of your intended market.  They help him navigate and connect with his world.

"Here's to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They're not fond of rules. And they have no respect for the status quo.

"You can quote them, disagree with them, glorify or vilify them. About the only thing you can't do is ignore them. Because they change things. They push the human race forward.

"And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do." ~ Steve Jobs, in a 1997 Apple advertisement

As a mother of an amazing little boy on the autism spectrum, I thank you, Steve Jobs.  I thank you for your contributions to our community.  They have paved the way for additional options for our kids.  If you wanted to make a dent in the universe, you did.  You made an impact on the lives of special needs children.

For that, we thank you.  Rest in peace, Mr. Jobs.


“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” ~ Steve Jobs, at a 2005 Commencement Speech at Stanford