Wednesday, February 29, 2012

The Week of Non-Stop Testing - Part One

 Jack's school testing started on Monday with what would be the biggest component of his testing - the speech and educational evaluations.

We went into it knowing a couple of truths.  One, we knew that Jack would not perform as well for the school district as he does for his beloved therapy team.  Hell, he didn't perform well for them initially; it's been a relationship that has taken 11 months to continuously cultivate into an understanding and trust between him and his therapists, as I imagine it is with all children with special needs.  Two, we knew roughly what Jack's scores would be.  We had done some recent testing for Medicaid, so we knew that Jack's scores would like fall just below that.

On top of that, it's not Jack's first time at the rodeo, so to speak.  The kid has had lots of testing in the past year, so he's unfortunately used to the routine and structure of standardized testing.  That doesn't mean he performs well, but it's nothing new.

Of course, there are always surprises.

Jack was initially apprehensive and freaked out a bit when the educational diagnostician pulled out a toy that made noise.  He flipped, so she turned the sound off.  He also didn't want to engage the speech therapist in her standardized testing, so the resorted to collecting data through observation and play, which isn't unusual.

After that, he was pretty happy.

So, for the surprises...Jack did his first distal point during the evaluation!!!  Almost 3 and he's never pointed...until now!  Granted, he didn't do it in a way that showed joint attention (as if to say, "look at that!"), but considering that he'd never done it before, it was huge!  Of course, he does it just 30 minutes after I say, "Jack doesn't point."  Little stinker...

Now, for the negative surprise...Jack didn't do as well on the cognitive portion as I expected.  Unfortunately, that tends to be the case with his cognitive skills often.  He still isn't looking for objects and kind of operates on an "out of sight, out of mind" basis.  He also can't match objects.  He did put together a simple puzzle with only a circle and square when he could see where the pieces went prior to him putting it together.  That's a skill he couldn't do previously.  He does lag behind cognitively, but I'm hopeful that he'll catch up.

He spent a good portion of time stimming on a marker, rolling it back and forth on the desk.  Obviously, functional play was discussed and will have to be addressed.

He also pooped during his assessment.  It's always lovely to have a stranger turn to you and say, "I think your son is using the bathroom."  Nice, Jack...he pulled out the grunting and the beet red face, too.  Luckily, they found it funny and were more than willing to let me change a diaper mid-way through the testing.  Communicating toileting needs was also determined to be a goal for Jack this year (yay...hopefully potty training's the next step!!!).

Peer interaction goals were obviously discussed and we all agreed that we needed to work on Jack's ability to imitate a peer, to parallel play, and to initiate and sustain interaction with a peer through a simple game (like rolling a ball).

We talked about some speech goals, like Jack being able to tell someone his name and age and increasing his vocabulary.

All in all, it was a very positive experience.  I try not to be too optimistic, because I hear horror stories from other parents, but I have one advantage...my MIL works for the school that Jack will attend.  She's been an advocate for Jack up there since he was first diagnosed and my hope is that her presence will make this whole process, and his transition easier.

We had a day off from testing Tuesday, but this morning will bring Jack's psychological evaluation and tomorrow we will conclude the week with Jack's OT/PT evaluations.  From then, it's just a couple of weeks before his IEP meeting.

In this marathon that is the month of March, we're getting off to a good start.  Let's just hope we can keep up the pace.

Tuesday, February 28, 2012

Gone

Autism isn't a sprint...it's a marathon.  Sometimes, you
just need to take a breather and eat some sport
jelly beans.
(Image Source: Olympic.org)
She's gone.  She's gone.  Holy $#*!, she's gone!

Now, after reading that, you might think that the person who's "gone" is me.  Nope, much worse.  It's Jack's special instructor.  She's gone for 6 weeks.  Not just gone, but out-of-the-country gone.  She's gone during IEPs and testing.  She's gone during Jack's PreK transition.  There will be a 3 week period in between now and when Jack starts school in which his entire behavioral and educational program rests on my shoulders.

I knew this was coming, but now that we're here I find myself panicking a wee bit.

Can I handle it?  Probably.  She's been gone for a 2-week stretch once and we survived.  However, it feels eerily like taking the training wheels off of my bike.  Will I fall or will I hold my own?

More importantly, what will it be like when she returns?  Will we go through a whole period of transitioning back into his social skills tutoring (which is what SI will be once BCW drops it)?  Will it mean weeks of screaming and reacquainting Jack to her?

I keep hoping that I'm wrong.  That the transition will just go smoothly without her.  That school will fill that social skills and behavioral void in a few weeks.  That I'll not lose my sanity, which seems too much to ask.

Chocolate therapy.
(Image Source: Real Simple)
I guess I get a little burned out sometimes and the thought of carrying more of the burden for a few weeks really freaks me out.  I'm human.

Here's the thing...I do 3-4 hours of Floortime with Jack on most days.  I've been pushing myself at that ungodly pace for a year.  I do it with the assumption that I won't be on that breakneck pace forever.  That as my child ages, school, social skills, and other therapies will take the place of the Floortime and I can cut back to 1-2 hours daily.  As I near the finish line for this Floortime marathon I've run this year, taking on the role of SI to Jack for a few weeks seems like having to start sprinting in mile 25.  I've only got 1.2 miles to go, but sprinting it seems to be an unimaginable task.

I had a mom ask me yesterday if I'd ever consider homeschooling Jack...providing an all-day-long Floortime and academic experience for him.  I said that I would if there were no other options, but that if any other option existed, I'd take it.  I'm not cut out for homeschooling long-term.  At a certain point, I have to be me and I have to find me again.

It's convinced me that I can't sustain this pace forever.  I wish I could say I'm super mom, but I'm not.  At some point, I will have to back off and trust more of Jack's program to others, like his teachers, his school, and his therapists.

Hopefully, the next 6 weeks go by without a major disruption from the absence of SI.  If not, here's hoping that the amount of available chocolate in my general vicinity is directly proportional to my stress level.

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Monday, February 27, 2012

The Standard Uniform of the Special Needs Mom

How can you tell a special needs mom from the other moms?  Well, if we don't have our kiddos with us, you can tell us from the neurotypical moms by our uniform.  Sure, parts of our uniform overlap, but I find that we overwhelmingly look similar...

1.  Untamed and Wet Hair.  The hair of a special needs mom hasn't seen a blow-dryer in years.  Believe me, I commented to the stylist the last time I went for a decent (i.e. not Great Clips) haircut (this was almost a year ago, by the way) that I hadn't had my hair blow-dried in a year.  My hair hasn't seen a blow-dryer.  It's in part due to lack of time, but it's mainly because Jack screams at the sound of the blow-dryer.  I also have little snippets of grey hair that I either try to strategically hide or pluck.  Unfortunately, if I plucked them all, I'd be going bald.  I also choose to spend money on special needs play group rather than a $70 hair cut.  My hair really hates me for it and lets me know daily.

2. Cargo or Sweat Pants.  I can rock a pair of dress pants if I have to (think IEP meeting attire), but for the average day of therapy and Floortime, I'm in pants that I can crawl around on the ground in (and it's not always carpeted or indoors) and that move freely to allow me to run after Jack when he bolts.  And he's surprisingly fast, but luckily his coordination is so poor that he tends to trip before too long.  Pockets in said pants are essential, both for personal paraphernalia like keys and a phone (who wants a purse these days?) but also for fidgets.  I have no less than 3-4 magnetic letters in my pants at any given time.  Washability is a plus, especially since we're not totally past the vomiting days (though I've gotten peanut butter and amoxicillin on my pants more than vomit these days...and I'm actually glad about it!).

3. Lack of make-up.  Granted, I have allergies to just about every kind of anything that goes on one's skin, but I probably wouldn't be wearing make-up anyways.  Why?  Because, that's 5 precious minutes of sleep I could get instead.  Besides, the only other people I'm going to be seeing during the day, besides my kiddo and the husband (who has seen me on Saturday mornings and during labor, so he's seen the worst of me), are the other moms and therapists at the clinic.  So, can we all just agree to not wear make-up?  We can?  Awesome.  However, that doesn't mean that we don't have color on our faces.  Enter...

4.  Under-eye circles.  Worry and lack of sleep are a bitch.  I think we all look like we haven't seen a beach in years from the pastiness of our skin.  However, who needs a tan when you have purple circles under your eyes?

5.  Super-sized coffee.  Sure, I drink decaf, but that doesn't mean that I don't drink (and that I don't long for caffeine).  Something about our lives makes us seemingly dependent on this substance for survival.  Once I figure out how to do an IV infusion of coffee, I'll let you know.  I'm sure there would be plenty of moms who would be on board.

6.  Last season's shoes.  Did I say last season?  Maybe I should clarify.  I meant 5 seasons ago.  Suddenly, the only shoes I own are the 3 pairs that I can throw on quickly.  No one will have laced shoes in this house until Jack can tie his own, because goodness knows I'd be spending hours tying shoes.  My shoes are something that my shoe-fetish mom and sister would absolutely never be seen in (and they do mention my utter lack of taste in footwear), unless they were incapacitated.

7.  Apple devices.  Our kids are dependent on them, so no self-respecting special needs mom leaves home without her iPhone or iPad.  I'm waiting for the day when I'm just replaced by the iParent.

8.  Awareness bling.  We wear necklaces and bracelets and all sorts of things touting how rediculously awesome our kids are.  Because they are.  And I'm proud to say it.  And wear it.  And put it on the back of my car.

9.  Luggage.  No, I don't mean that special needs moms carry baggage (though undoubtedly some of us...many of us...do).  It just seems that there is proportionally more stuff that you must have on you if you have a child with special needs.  For the extended diapering among us (I like that better than saying my child is still not potty trained), we learn that diaper bag paraphernalia gets bigger as our kids do.  So, we tote jumbo diapers, changing pads, wipes, etc.  Many of our kids are on special diets, so we must bring enough food to last seemingly 24 hours away from home.  We must bring our kids' fidgets, sensory items, brushes, headphones, and anything else that we might possibly ever need, or we risk a  meltdown.  Add in PECS and the above mentioned iDevices, and it's no wonder that none of us ever seem to carry purses.  We have an entire duffel bag's worth instead.

10.  Attitude.  Do we seem to have a "don't mess with my kid" look on our faces?  We probably do.  We stay on guard and we've been burned too many times.  So, you might shouldn't comment on our appearance, because you might get either tears or an "eat poo and die" look.

Special needs moms...what's an essential part of your uniform?



Friday, February 24, 2012

A Roller Coaster

Today I took Jack to a make-up session with his special instructor at a local sensory play center that caters to children on the autism spectrum.  We've never been before, but let me say this...it was AWESOME.  Let me try to paint a picture for you that I'm sure will not do this place justice...

You enter into an absolute sensory wonderland.  We were essentially the only ones there.  The lighting is low, which is perfect because Jack doesn't like Sthe lights being too bright.  There are two darker rooms with bubble tubes and colored light displays.  Oh, how Jack loved these bubble tubes.  They are about 8 feet tall, filled with water and have aerators and colored lights that make a colored bubbles display.  He could have stared all day long.  

There was a table with bells that Jack kept touching, one after the other, in left to right order.  Jack's special instructor hit one of the bells with a stick and Jack ran from the room at the sound, to the safety of his letters "A" and "T" for a few minutes.  However, he went back to the bells, to continue to touch them in sequence.

There was a swing, not unlike the one Jack has at home, but this swing was more like a cloth that enveloped him and let no light in.  He loved it.  He sunk into the swing and shed every care he had.  The swing was also rotary, so I let him swing and swing until I felt like we should move on, but he would have slept in that swing if I'd let him.

Best of all?  There were roller coasters, like the one I have pictured above.  Jack rode on it over and over again.  Sometimes, he'd push the car to the top (it took a while to teach him how to do that, though) and just watch it zip down the track, flapping his hands the whole way.  To see the pure joy in his face when he gets like this...it's just priceless.

We'll definitely be going back.

However, after a morning of pure, unadulterated fun, I realized the error of my ways.  Jack had gotten a bit overstimulated.  Jack got in the car just fine, and we even headed home without protest, but at a certain point, Jack started screaming "All done shoes! All done shoes!"  At a stop light, I reached back to take his shoes off, only to be met with the chorus of "More shoes!  More shoes!"  It was a long drive home.

Even after that, he was distant at aquatics.  He didn't want to be on his back in the water, which really isn't anything new, but today he would scream and squeal when put on his back.  His physical therapist commented that he was a little amped up.

It's such a delicate balancing act with special needs kids between giving them enough stimulation to help them develop and giving them too much.  I think the lesson learned from today is that I'll take Jack to the sensory nirvana on non-therapy days, because he clearly isn't at the point where he can handle both in a short period of time.

But...we will go back.  That roller coaster's calling his name.

Thursday, February 23, 2012

The Weeks from Hell Parts Three and Four - Testing and Hope

It's been a long week.  Sometimes I wonder if I can keep this pace up.  I don't know if I can, but certainly I will.  What choice do I have?

On the heels of a week filled with make-up therapy sessions, illness, doctor's visits, and twice-daily fights to get medication down, we approach next week, which will go down in history as

THE WEEK FROM HELL PART THREE - THE TESTING TRILOGY

which will be followed two weeks later by

THE WEEK FROM HELL PART FOUR - A NEW HOPE.

Please ignore my lame attempts at Star Wars humor...I'm sleep deprived.

Why the weeks from hell?  We've been here before.  Next week's going to suck for three reasons...testing, testing, and more testing.  Yep, Jack starts his testing for school placement.  Even though we basically know what his school placement is going to be, there are tons of evaluations that have to take place - 5 to be exact.

Those 5 evaluations will be mercifully split into 3 days of testing.  Monday brings Jack's speech and educational evaluations.  Wednesday is his psychological evaluation, which I'm told will consist of some non-verbal intelligence testing.  Thursday brings occupational and physical therapy evaluations.  This is on top of his regular therapeutic schedule, minus special instruction because his SI will be out-of-town for more than a month (I will have a minor freak-out about that in a future post).

I'm going into the testing with somewhat of an advantage, I guess, because Jack recently (and I mean within the past couple of weeks) had some standardized testing done for Medicaid purposes.  Given that his beloved therapy team performed these tests, I can trust the results they obtained, so I know what to expect in terms of his level of functioning.  So, when I get results back saying that my child communicates at a level more than a year behind his chronological age, it won't be a big shock.

So, what is this new hope I mention?  Well, perhaps it's me thinking optimistically, but I refer to Jack's IEP meeting.  It's scheduled for 2 weeks following his testing.  Now, if that wasn't enough, on top of Jack's therapy load for that week, he'll also have an exit appointment with our beloved BCW service coordinator (who has fought tirelessly for Jack) and Jack's first dentist appointment.  Yep...I like making things stressful.  It improves my parenting performance.

We're winding down a crazy week and I'm looking forward to the promise of a weekend that will (hopefully) be filled with a bit of rest and relaxation.  Then, onward for the marathon that is March...

Monday, February 20, 2012

Ears, Doctors, and Snot...Oh My!

Contrary to what many people will say, my kid on the spectrum doesn't get sick often.  Seriously.  You hear of autistic kids who are always battling one ailment of another, but I've been fortunate that mine isn't one.

Either that, or I'm really bad at determining when my kid is sick, which is entirely possible.  In my defense, he can run into a wall and not feel a thing, so it stands to reason that illness might not present in the normal ways.

So, when my baby boy had a runny nose this weekend, I didn't think too much of it.  When he had a meltdown that lasted an hour and a half, I was drained, but it wasn't out of the norm.  However, when he looked like every ounce of energy had been drained out of his little boy, I knew something was wrong.  I pulled out the blasted rectal thermometer (it's actually easier to do that than to get him to put a thermometer under his tongue) and saw he was running a low-grade fever.

Bummer.

We spent all day yesterday just resting, hoping that the day of rest would do it.  It didn't.  At bath time, Brian was washing Jack's face, when one touch of his ear made him cry out.

Now, I know what you're saying.  It's what the pediatrician said.  He has sensory issues with his ears, right?  Well, this wasn't sensory.  This was pain.  This was a scream of pain from a child that doesn't feel pain.  He can run full force into a table and walk away with a slight giggle, scripting "Are you okay?", which is what I always ask him when he falls down.  Instead, he's crying and pushing his fist into his left ear.  It was time to go to the doctor.  We rescheduled therapies and planned for today to be a sick day.

I called this morning and got him an appointment for a couple of hours later.  We walked in and left 50 minutes following our arrival with a diagnosis of a double ear infection and a prescription for antibiotics.  On a good note, thanks to my iPhone (I caved...I just needed him to be quiet and happy) he managed to handle the doctor's office okay, with the exception of the exam itself (he can't stand being touched by the instruments or the doctor).

Of course, I fear a repeat of the great Prevacid debacle of the summer of 2011, but antibiotics must be taken.  Here's hoping that we don't see some weirdness occur.

I swear, there's nothing that sucks worse than your baby being sick.  Sure, I hate being sick.  I absolutely hate it.  I hate the feeling of helplessness that illness imparts, but I'd gladly take it for my boy.  Fingers crossed for a speedy healing for my Jack, because I sure hate seeing him feel bad.

Tuesday, February 14, 2012

Started It All With BASEketball...

Some things are so rediculous, they
simply have to be recorded in a blog
for all to see.
(Image source: Wikipedia)
Last year on Valentine's Day, I wrote a nice, sappy post about how much I love my husband.  Instead of doing that this year, I'm going to reminisce back to where it all started.

I don't know if you believe in soul-mates, but I honestly believe that Brian and I are soul-mates.  If we weren't, I don't think that the following would have resulted in marriage and offspring many years later...

This story, I'll warn you, has many embarrassing elements that I can recall in striking detail.  Grab a bowl of popcorn and have a seat, because this has the makings of the world's worst romantic comedy.

It was October of my senior year of high school (1999, for those of you trying to do the math).  I already knew Brian, and we were both on our high school debate team.  Yes, I'm aware that's nerd-alert number one.

I was supposed to be going out on a semi-blind date with a guy who all of my friends had billed to me as a James Van Der Beek look-alike.  Nice throw-back to the Dawson's Creek days, right (even though I never watched the show)?  Now, this guy wasn't bad looking, but he wasn't James Van Der Beek, either. However, he seemed nice enough and came highly recommended, so I agreed to go.

That Saturday of our semi-blind date, I waited for him to call.  And waited.  And waited.  And waited.  Suddenly, it was about 7:00 PM and I'd received no call.  In a controversy that remains to this day, I considered that being "Stood Up."  So, when I got a call from Brian asking I wanted to go bowling with him and some of the people from debate, I said, "Why not?"  After all, my date was a no-show.  By the time I left to go bowling, my "date" still hadn't called.

I come to find out that he called much later in the evening.  Guess what...you don't call a high school girl saying "Let's go out tonight" after 8:30 PM.  You've missed your window of opportunity.

So, I get to the bowling alley and don my bowling shoes and get ready to bowl.  I briefly noticed that Brian actually had his own bowling ball, which for some reason I found slightly nerdier than being on the debate team.  Hey, I was a nerd myself, though, so who was I to judge?  I sat down next to another guy from debate, who kept whispering to me, "Brian really likes you."

Hmmm...he does?  Now, here's the thing, I liked Brian, too, but didn't tell anyone.  My debate partner (because he leaned towards douchebaggery like this) told Brian I liked him several weeks earlier, forcing me to recant this third-party admiration for my future spouse.  So, who the hell knew what Brian thought?

The rest of the evening at the bowling alley was fairly uneventful, except in the way that teenage boys make things eventful by greasing the bottoms of people's shoes.  Someone did drop a bowling ball on their head, too.  Good times.

Afterwards, it was determined that we'd go back to this one guy's house to watch a movie, so after a brief trip to Blockbuster to select BASEketball (I know...I know...), off we went.  Brian hadn't driven himself, so he rode with me.  We always enjoyed talking to each other (usually, we'd talk for hours at debate tournaments), so I enjoyed his company.

That, and I found him really attractive.

So, when we got to our destination, before going inside with everyone, Brian asked me, "So, what did _____ tell you?"

I knew exactly what he meant, but I tried to play it cool.  "He said you liked me, but I don't really listen to the bull$*** that _____ says."

"Well...I do...would you maybe want to go to Homecoming with me?"

Sweet!  Of course, I had to play it smooth and mention the one obvious question, "What about your girlfriend?"

Oh yeah, that.  Brian had a girlfriend for a few weeks who I had witnessed sticking her tongue very far down my future husband's throat on several occasions in between classes at school.  As far as I knew, kissing like that seemed a good indicator of relationship satisfaction, but maybe not.

"Yeah, I'll call and talk to her later."  That seemed to settle it in my mind, for some odd reason.  As an aside, when he did finally get her to answer a page (back in the day of pagers...awesome) a couple of days later, she said she had already decided to go to Homecoming with someone else and had a date lined up.  I guess this is why I am married to Brian and she's not.

So, after all of this romantic talk, what are two teenage dorks to do?  You've got it...hug and go inside to watch BASEketball, holding hands mid-way through the movie.  Don't worry...I drove him home that night and we ended up making out for about 10 minutes in my car in front of his parents' house.

To my in-laws, I do apologize for making out with your son in front of your house...and in your basement.  It worked out for the best, though, because about a decade later you got a beautiful grandson!

The next day, I went over to Brian's house to "watch a movie" (teenager for "make out"), and he asked if he could tell people I was his girlfriend.  I'm still his girlfriend (technically...I don't think we broke up before getting married/engaged, so I'm still his girlfriend too, right?) almost 13 years later.

He still makes me smile.

We've been through a lot together, Brian and I, but I still consider him my soul-mate and best friend.  He's still the person I'd choose to be around over anyone else, with the exception of Jack, of course.

Happy so-many-Valentine's-Days-that-I've-lost-count Valentine's Day, sweetheart!  I'd gladly suffer through BASEketball all over again, but is it okay if we don't make out in front of your parents' house this time?  It would seem a little awkward at this point...

Monday, February 13, 2012

A "Typical" Trip to the Mall

The mall, or potential kryptonite to the ASD kiddo.
Jack and I went to meet my stepmom and my sisters at the mall last week.  They were in from out-of-town, so I decided to take a chance with taking Jack to a place that is, typically, very anxiety-inducing for him.  However, the mall has one thing that Jack absolutely adores...a ride-on train.  So, with the promise of a train ride and a freshly printed Gymboree coupon in my hand, off we went.

I'll say that a year ago this trip might not have even been possible.  Indeed, even now it might not have been possible if it weren't for two things: my iPhone and Jack's headphones.  Those two items together are an absolute life-saver for Jack in stressful situations.  

Even on a weekday at lunch, a time in which you'd think the mall wouldn't be that bad, it gets extremely stressful for Jack.  The next time you go to the mall, pay attention to just how loud stores play their music.  In particular, listen to the stores that lure kids and teenagers in (which is where my siblings want to go).  The music is pretty loud, even for the most neurotypical among us.

Second, think of all of the additional sensory stimuli you encounter.  You may not notice it on a typical visit to the mall, but it's there.  Spend a good 10 minutes at your next trip to the mall taking in stimuli.  The clothing is brightly colored.  The lighting is brighter than at your house.  There are smells from the Food Court, from perfume counters, and from the stores themselves (I can't walk past Abercrombie and Fitch without feeling like I'm about to asphyxiate).  It's all stimuli that we simply ignore, because our brains have determined that those sensations aren't anything to worry our pretty little minds over.  However, with the child with sensory processing challenges, like Jack, all of those sensations come in full blast.  

This is where the headphones and iPhone/iPad come into play.  Both allow Jack to escape the world which is all too overwhelming for him.

When we got there, Jack's headphones went on.  Sure, he checked out, but he was able to handle a situation which would have caused him to meltdown previously.  At lunch in the Food Court, I let him play on my iPhone while I fed him a couple of French fries (alas, he only took two bites, but I really couldn't expect too much more from him).  He didn't want to wear the headphones while playing on the iPhone, which proved to be a bad idea a bit later.  We went into a store geared towards teenagers, and the music caused him to do an about-face and run from the store.

I decided to take Jack to the little indoor playground there in hopes of letting him get some movement that might help him stay regulated.  There were only 3 kids on the playground, all girls who were younger than him, but they wanted to play with him so badly.  They kept following him around and wouldn't leave Jack alone, which made him scream out and start to meltdown.  It wasn't even that they were up in his face, but they would try to get on the same piece of play equipment, which would cause him to back into a corner and scream.  Damn social challenges.  We got a couple of dirty looks from the other parents, in particular after one little girl ran crying to her mom because Jack was scaring her.  After that, it was time to go.  Jack wasn't gaining from the experience.

Jack then got to ride his beloved train, but only after about 15 minutes of pacing.  That was fine, though, because I knew he needed that to unwind after the playground.  He loves the train.  He rode with his aunts and didn't even notice that I wasn't there.  I think he could be riding with a giant Mickey Mouse (who he hates) and not care, just as long as he's on the train.  After a brief bolting spell after getting off the train (he took off at full gallop away from me...scared the crap out of me, too), all was well.

After that, it was back in the stroller and back on with the headphones, which I'm so externally grateful for.  I swear, it is possible for us to take Jack into stores that we never could have before, just as long as he's wearing those headphones.  It gave me the opportunity to go into Gymboree, where Jack got a couple of new outfits for school.

While we left the mall with one negative experience (the social stuff never gets easier), we also left with a sense of triumph.  Sure, Jack needs a lot of support, but with that support he did things today that we'd not been able to do.  It makes me hopeful that we can venture slowly out into the world and not be such hermits.

Support, headphones, and iPads...all that I can do for my boy, if it will only open up the world outside our front door to him.

Friday, February 10, 2012

Turn Off!

"Turn off!  Turn off!  TURN OFF!" 

Jack screamed at me through tears on Sunday night.  It was Super Bowl Sunday and Brian had a college friend of his over to watch the game.  I had taken Jack upstairs to get a bath and go to bed, but everything was wrong.  We had spent the early part of the evening in the basement with our guest instead of the living where he is used to staying.  He didn't get to watch the news, another part of his evening routine.  We even had to give him dinner a bit early, though he took a snack before bed.  I was taking him up for his bath.  Normally, Brian gives him his bath.

He screamed non-stop through his entire bedtime routine.  All he could say was "Turn off!"

Welcome to the new sensory element in our house.  I'm sure it's always been there, but he only now has the language to somewhat convey what's going on.  You see, lighting seems to affect him.  Sound too, but we knew that.  When he gets disregulated, which happens once or twice on good days, he wants all lights and sounds off.  So, I taught him to say "turn off" when he wants the lights off.

The problem comes when we aren't sure what he wants turned off.  He'll yell "Turn off!" and I'll be frantically searching for a light or sound source that I've missed.  In reality, it may be something that only he can hear (I'm convinced that he hears things in the house that our hearing isn't sensitive enough to pick up).  Or, he'll yell "Turn off!" at an inopportune time, like when we're changing a diaper or bathing him.  Obviously, I need some light on to do each of those tasks safely.

It's not MC Hammer...it's Jack.
I'm glad he has some language at this point to tell me about this need, but it'll be far more helpful when he can produce spontaneous 3-word phrases so I can know what the hell to turn off!

I never quite realized that lights affected him this much.  It makes me wonder, how many meltdowns were triggered (or could have been avoided) by the light levels in his environment?

To a certain degree, I'm hesitant to give Jack an environment of total darkness, because he'll just shut himself off.  In fact, one of his absolute favorite things to do is to get in his net swing and swing in the darkness.  Disengagement isn't really the alternative I'd choose to disorganization.

He also loves wearing headphones lately.  Not only does it block out sound, but he gets some pressure to his head from the headphones, so he likes that.  Luckily, we've been able to teach him to say headphones, which comes out as "headsphones"when Jack says it.  He's almost always willing to put them on in a stressful situation, like at a store or somewhere other than home.  The only thing I don't like about the headphones is that, yet again, he can "check out".  I can sign to him if I really need to get his attention, but he doesn't have to engage the world as long as he's wearing his headphones.

I just can't help but feel sorry for my little angel.  I wish I could really understand what life is like for him and why these things bother him so.  If I could, I would fix it in a heartbeat.

Thursday, February 9, 2012

Standardized Testing

As a result of Jack obtaining the Deeming Waiver, this week has been comprised of a bit of standardized testing for my boy.

Standardized testing.  It's unfortunately a necessary evil.  It's a measure of where Jack compares in relation to his peers.  However, Jack has a developmental disorder, so he is by definition not like his peers, except that they are all human.  What could be more human than diversity?

Here's the thing about standardized tests.  They assume several things about a person.  One, they assume that you can take standardized tests well.  Two, they assume that you have age-appropriate social and language skills.

I know the results from some of his tests.  Some made me pleasantly surprised and showed some progress.  Others, not so much.  One test I didn't get an exact score on yet, but was told that Jack would score low on it.  Waiting for the numbers that mean so much in terms of what insurance and school will and will not cover absolutely kills me.  I'll bet that all parents will say that the wait kills them, too.

It's hard getting results from standardized tests and evaluations.  They often show our kids as having fewer abilities than they really do.  Or, you see your children being at one place and the results show them being at another.  Especially with kids with autism, it's not uncommon to see scores all over the place.

Again, it's just a number, though.  A number on paper that's used to get services and insurance coverage for services.  It shouldn't matter.  Really.

It always weighs on you a bit, though.  That weight can get heavy after a while, like a wet blanket that seems to envelop and drag you down, but with time the blanket dries and the weight gets bearable.

On the other hand, bad test results have a positive side to them.  It is much easier to access services if your child looks bad on paper.  This is a horridly sad fact of life for special needs families.  We ride a constant tight-rope between advocating how much our kids CAN do, but at the same time and in certain situations, we have to emphasize just what they CAN'T do.  Low scores mean more help for your child.

It's a fact of this process that tears me up at times.  As a mom, I always want to think the best of my child.  Just today, in fact, I learned from his speech therapist that he is now able to point (not distally, though, that distal point seems to allude us!) to pictures when he's asked "Where is the _____?"  I know he knows the vocabulary, but he'd never actually demonstrated a skill like this!  How incredible to watch his mind start to work!

There's always the flip side to this, and it's the deficits.  That he can't do a simple puzzle.  He can't self-feed.  He has very little functional language (he's doing some good labeling, though!).  He still won't give me a kiss, or a hug, or say "I love you."  He still can't climb stairs or scribble with a crayon. It's those things that have to be emphasized at times, particularly when trying to get services.

And boy does it suck.  It is getting easier, with time, to hear these things, because I know that it doesn't define who my boy is.  It's a set of characteristics, nothing more.  It is something that I have faith will get better with more therapy.  However, the deficits give access to the therapy that will help the deficits go away, so you have to meet the deficits head-on and form an understanding of sorts.  My child's limitations won't define him as a person.  His sweet face, his smile, and the way in which he captures my heart will.

We special needs parents just need to remind ourselves that it's not a measure of who our children are.  What they're worth.  What they're capable of.  It's a tool to get the services to ensure our children's futures.

Sometimes, I just need to remind myself of that very fact.  With support and therapy, my boy is capable of so much more.

Wednesday, February 8, 2012

The Life List

Here I am, just 2 months from 30.  To my younger siblings, that probably sounds like I'm reaching middle age (my sister's 30?!?) and to those have some years on me, that number is likely laughable (she's only 30?!?).  Yet, here I am on the doorstep of the 4th decade of my life.

In some ways I feel too young to be nearly 30, but I also feel as though the past year has aged me a bit.  Having a child with special needs has definitely made me more defensive, more leery, and a tad bit cynical, but I'm slowly finding my way back into the light.

I'm learning that the world doesn't revolve around autism, as I once feared it would.  On the contrary, the world keeps revolving independently of autism.  It is apparently not concerned about how many words my child can say, if he can use them functionally, and whether or not he can self-feed.

So, I find myself compelled to make not a bucket list, but a life list.  A list of things that I'd love to do in my lifetime.  It can be anything, achievable or bordering on unrealistic.  The important thing is to keep dreaming.  I'll add it as a page on my blog, and you may see it change from time-to-time.

To get things started, here is my life list:

  1. Crochet a full-sized blanket.
  2. Visit an actual Irish pub (in Ireland).
  3. Bake a cheesecake (and have it taste good).
  4. Buy a really good camera (I'm thinking Nikon D3000) and learn how to use it.
  5. Have a conversation with Jack in which he tells me about his day, about his feelings, about things in the past and what his dreams are.
  6. Have another baby.
  7. Learn a new language that I've never tried to learn before. (I'm still undecided as to which one - but it's between Mandarin, Japanese, and Italian.  I already know a bit of French, Latin, and some Spanish, so those are out.)
  8. Go back to school and study a field in which I can make a real difference in the lives of others.
  9. Gain a real sense of self-worth and not lose it.
  10. Research and make a family tree.
  11. Start running again and complete a 5K.
  12. Take hot yoga.
  13. Have a proper cup of English tea (in England, naturally).
  14. Take Jack out for sushi...to be preceeded by...
  15. Teach Jack to use chopsticks.
  16. Never drive a minivan.
  17. Sew one piece of clothing and actually wear it (costumes don't count).
  18. Learn to use a sewing machine.
  19. Wear a little black dress and pull the look off!
  20. See the Aurora Borealis in person.
What would you do with your life if you could?

Tuesday, February 7, 2012

Another Birthday, Another Transition

My angel turns 3 next month.  For most fledgling 3 year olds, the birthday means a party, balloons, cake and friends.  You know, the usual birthday party fare.

Turning 3 means much more for Jack.  He'll be transitioning out of BCW and into the school system.  That's a process and a half, let me tell you, but we're well on our way.  Before Jack can start school, he has to have the following:

  • A hearing screening (done and passed!)
  • An educational evaluation
  • A psychological evaluation
  • A speech evaluation
  • An occupational therapy evaluation
  • A physical therapy evaluation
And all of this, with the exception of the hearing screening, occurs within a week.  We then have a 2-week lull while reports are written and IEPs are drafted, and we then have his IEP meeting a little more than a week before his birthday.  After that, I have a week to get his forms together and get him registered for school.  And yes, the registration process for school for Jack is identical to what you have to do to register your kindergartner.  So, that means medical forms to be filled out and dental forms (along with a visit to the dentist...yikes!) that must be accumulated, signed, and ready to go.

I keep telling myself that if I can handle Katie Beckett, I've got this.  However, it's still hard to go into the process without worry.  After all, this is an important transition for him.  This is where Jack will remain for the next 15-18 years.  I want to get him everything, and I mean everything, so that he can one day be mainstreamed...hopefully.

I'll be able to relax when it's done.

Then, there's also the transition out of BCW.  Jack's service coordinator came by today to get Jack's Medicaid information (yay!  I'm still so excited about that!) and also scheduled our exit interview.  I can't get over it.  He's leaving this program that has been a part of his life for the past year?!?  I know that children grow and move on, but it seems so surreal that we're at this transition.

I'm hoping I can get through the next month in one piece.

Monday, February 6, 2012

Gratitude. Joy. Relief.

Wow.  I had one really awesome post planned for today.  Seriously, it was all planned out in my head.  However, something better, more pressing occurred and I simply must give it its due.

Several months ago, I applied for a Katie Beckett Deeming Waiver for Jack to allow him to access Medicaid through a special waiver program created for disabled children.  Jack's therapies are not cheap, nor have his other medical expenses been, like his endoscopy and pH study.  I am so happy to say that after months of worry and waiting over whether or not Jack would get approved for this, he got approved.  He will get Medicaid.

Why am I so happy that my child is on some kind of public assistance program?  Well, let me just say that I never imagined that I would be excited about that at this point in my life.  Seriously.  However, having a child with special needs changes everything.  No one, and I mean no one, sets aside money or researches health insurance assuming that they might have a child with a disability.  No one.  That's why I laugh when politicians claim that people who have disabilities or who have children with disabilities should be responsible for themselves.  I'd challenge them to find a way to pay for everything their child needs without feeling a bit of a pinch on their pocketbooks.  There is simply no way to plan for this.  That's why I am grateful for programs like this that help families like mine, who make a decent living but simply cannot afford thousands upon thousands of dollars a year in medical and therapy bills, provide the care that our children not only need, but deserve.

Health care and therapies should not be a luxury only for the super rich, in my opinion; rather, every child who needs them should have access to them.

It was such a long process.  The packet I submitted was at least 250 pages long (I think it was actually approaching 300).  It was a process that involved applying for SSI, getting denied for SSI, going to the local DFCS office, Jack licking the DFCS office floor, getting medical records and therapy notes SINCE BIRTH, writing a personal statement, and finally getting it all put together and shipped off with the prayer that it A) got to it's destination, and B) that I had done the damn thing correctly.

And now it's done.  It feels so cathartic to say that.

Now, I head into the business of tackling the next challenge lying ahead in Jack's program...getting his IEP set up and watching him start school.  It seems like there will always be a challenge, but with each triumph and challenge completed, I feel a bit stronger.  I feel like I can handle this.  I don't always feel that way, but today I do.

Today, I feel like I can do this.

Wednesday, February 1, 2012

The Worst Patient

What I feel like at the doctor's office.
(Image Source: www.thehealthvine.net)
So, I got to go to the doctor today for a check-up, as all good mommies should do.  I must confess that I am probably the world's worst patient, with the exception of maybe Jack, who has bent his pediatrician's finger backwards when she was trying to examine him.  I don't go that far.

I don't scream.  I don't protest.  I just go catatonic.

I'll give you an example.  I have a well-known allergy to all things stinging - bees, yellow jackets, wasps, you name it.  Luckily, I have yet to have a true anaphylactic reaction, but I always get very severe swelling at the area where I am stung which tends to incapacitate me for several days.

The last time this happened, I was about 25ish.  I was walking my dog when a wasp stung me on the side of my foot.  My foot swelled up to where it resembled the appendage of an ogre.  So, off to the doctor I went for the only remedy...a shot in the ass.  Now, the other thing I should mention is that this injection has the consistency of molasses, so it takes a bit longer than the average shot to administer.  And it stings. So, I'm laying on an exam room table waiting to get my shot and as they start to inject me they feel the need to make sure I'm okay.  Well, I can't speak.  If I open my mouth a scream will appear.

The only time that I ever recall not feeling fear in a physicians' office/hospital setting was when I was in labor.  I remember before I went into the hospital, I feared getting an epidural.  Boy, did my opinion change when I was actually in labor.  I think I would have consented to being shot in the leg with a deer slug with that pain.

It is this craziness that surely causes my blood pressure to rise whenever I enter a doctor's office.  It's not just for my own appointments, though, but also for Jack's.  Maybe it's that I am anticipating his meltdowns, but I can't help but feel my own anxiety rise at his medical appointments.

Anxiety is a bitch.

Maybe I have a touch of the anxiety that Jack feels.

Do you ever have instances such as this in which you feel your anxiety is uncontrollable?  Places or situations in which you cannot help but feel overwhelming fear?