Thursday, March 28, 2013

Frozen in Time


"...characterized by uneven development..." ~ An excerpt from our county's criteria for Autism eligibility

"...the gaps between Jack and his peers will widen in the coming years, and the difference between his strengths and weaknesses will continue to grow..." ~ An excerpt from a recent developmental evaluation

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5:00 PM.  Jack is still napping.  It's one of the two days a week he goes to full-day Pre-K, with therapy not interrupting his school day midway through his day.  As with all of his full-days, he got off the bus, had a few Cheezits (the ones with letters, of course), and a refreshing glup of milk.  When I mentioned "nap time", he let out an angry squeal or a few grunts of protest, followed perhaps by an "All done nappy!" or two.  Eventually, after a clean diaper, a story, and a song, he's drifted off - his body no longer able to fight the wave of exhaustion that overcomes him at this point each day.

Two hours later, he's still sleeping, as always.  He needs to wake; the prolonged sleep only makes going to bed more difficult.  He also needs ample time to eat his dinner.  Typically, I would rub his back until he (angrily) wakes, at which point I would change his diaper and take him downstairs, crossing my fingers that he won't be so upset as to trigger a meltdown.

Tonight, however, I hesitate.  Something urges me to simply lift my sleeping babe out of his crib and carry him to the rocking chair.  He barely moves, but nuzzles his face into my chest as I settle with him in the chair.  For a mama who never gets to snuggle with a child who seems to need to resist affection, this is an indulgent treat.  My little one - unaware that I have broken that barrier he, or his neurology, constructs - is, for the moment, securely resting in my arms.

As I rock him gently, my hand moves up to his face, just as it did so often when he was an infant.  I trace the outline of his lips, his nose, and his ears, all features that belong to either Brian or myself and are duplicated in our boy in miniature.  I run my fingers through his hair, which - like mine - maintains a baby-fine texture and is a unique mixture of brunette, blond, and red hair all rolled into one.  Like mine, his hair can take on the shade of any of the three, depending on the light.

I breathe deeply and try to remember that deliciously sweet newborn smell that I couldn't get enough of in his infancy.  It has been replaced by the smell of the wind, the outdoors, and a day's worth of childhood folly.  In many ways, he rests in my arms in the form of a sleeping 4-year old little boy.  As my husband reminds me often, he's not a baby anymore, and yet he is.  Watching his slumber, one might never know of the challenges he faces seeing him like this.

Despite his chronological age, he still seems almost frozen in time.  I look down and see his lips involuntarily move in a suckling motion, a vestige from his infant reflexes.  His body is still very small for a 4-year old, as his feeding challenges have made it difficult for him to put on and maintain a healthy weight and height.  When he wakes, he will still act - developmentally - like a 24-month old.  He will speak like a very young 2-year old.  While he will be able to identify all of his letters, numbers, and colors, his reasoning ability will be a the level of a young toddler, as will his social skills, which stay at an infant level.

This might have been a reason for me to scream to the heavens, cursing autism for the challenges brought upon my boy, but I won't.  Not today.  Because in my arms is a sleeping babe - seemingly suspended in babyhood - for me to love all over and enjoy.

You see, despite the growth in his body, autism and his other disabilities have preserved his babyhood for just a little while longer.  While I could be angry that he struggles to speak, I simply cannot at this moment.  Autism isn't a developmental stop; it's a developmental delay, but one that has granted me a bit more time cherishing the little joys of babyhood, like that little suckling motion.  The babbling that he still engages in from time-to-time.  The tininess of his voice that makes him sound much younger than his peers, but that I simply adore.

The way that - in these stolen moments - his little head fits perfectly in the crook of my neck.

In this moment, I don't worry about the milestones missed, the standardized scores or standard deviations behind peers, and the unmet goals.  Instead, I enjoy this moment - this fleeting, stolen moment - and feel briefly thankful that I am blessed to get to enjoy his babyhood just a little while longer.

Wednesday, March 20, 2013

Statistics vs. Sensationalism


A study is coming out today that will report that the prevalence of Autism Spectrum Disorders in school-aged children has risen to 1 in 50.

Or...has it?

That number seems scary.  It's definitely going to sell papers, grab headlines, and cause people to watch the news a little longer than to just watch the weather forecast.  The engineer in me asks this question - can I trust it?  Can I allow this report to frighten me?  Can I really believe the media?

This is why I firmly believe that special needs parents need to be amateur statisticians.  Think about it - we deal with standardized data, percentiles, and studies with convoluted results daily.  We have to be able to sort through it all, pick out what is critical, and discard the rest.

So, where does this 1 in 50 study fall into all of this?

When you evaluate a study for credibility, you need to look at two things - is the test method good, and what do the conclusions actually represent.  When looking at this new 1 in 50 study, the first concern I have is over the test method.  Unlike other CDC studies where information is gathered from an outside source, this study involves self-reporting - or calling and asking families how many of their children are autistic.  This introduces parental bias into the game.

Let's face it, everyone lies.  (Thanks, Dr. House!)  It's not always a conscious lie that we tell, but our own bias and misguided thoughts that lead us astray.  If someone were to ask me if I have an autistic child, I could say yes with all confidence.  He's been tested by both a developmental pediatrician - the gold standard, if you will - and the school system and BOTH have confirmed it.  Thus, I'm basing my information off of a 3rd party.

However, what if I was in denial?  What if someone asked me if my child was autistic, but I wasn't ready to admit it?  What might I say?  I might say that my child wasn't autistic, because I wasn't ready to admit it.

Or, conversely, what if I thought my child was autistic, but I had yet to obtain a diagnosis?  What might that parent do?  When asked if they had an autistic child, that parent might very well say "Yes".

The problem with self-reporting like this is that there is no one to fact-check on the tail end.  No one follows up with these families to see if they actually obtained a diagnosis for their child or not.  Certainly, there would be some "No"s that would be incorrect (parents in denial), but there would also be some "Yes"s that would be wrong as well (parents who are simply incorrect in thinking their children have autism).  Would those incorrect responses on either side balance out the other?  Since we haven't accurate diagnosis data on any of the respondents, we can't ever truly know.

Need more proof about the fallacies of self-reporting?  I'll give you an example from when Jack was diagnosed.  Here I was thinking that I was seeing the worst in my son.  I thought that I was surely seeing things no one else was seeing.  So, when I took a parent assessment that was designed to gauge Jack's development in many different areas, I was shocked to find out that my scores placed him a full 7 months ahead of what objective testing did; he was functioning at the level of a 7-month old, but I was seeing him at the level of a 14-month old.  My own Mommy-bias was giving my kid a "boost" in his scores.  Subsequent testing confirmed that my own assessments were generous and off the mark (he didn't reach that level until last year).

I can hear what your'e saying..."But RM, you always preach that parents know best!  That we know our own children, but now you're saying we're biased and can't be trusted?"  Well, yes and no.  Parents do typically know something is wrong.  We know that our children are not developing in a typical manner.  What we have a harder time doing - especially early on - is pinpointing what is going on and where our children truly function.  That acuity in judgement comes with time and experience.  That's the reason why I knew that my son wasn't moving like other children, but I never dreamed he needed physical therapy (I was SHOCKED when I got his first set of PT evaluations).

You see, parents are emotional creatures.  When it comes to self-reporting - particularly for our children - our responses can't always be trusted when looking for objective, unbiased data.

Then we have to look at how this information is presented.  The lay-person is not going to actually open a link to a study presented to them so that they can scrutinize the testing method and draw their own conclusions.  Rather, we will look at the headline, skim the article (written by journalists, not scientists, in all likelihood), and we will take that to be truth.  So when we see a headline that says this:

"Autism Rates Skyrocket to 1 in 50"

we believe it.  We trust the media to not lead us astray, but they do.  That's why the studies the media latches on to are studies about causation (living near interstates causes autism and other such garbage) or about cures (20% of children lose their diagnosis, which we all know is absolutely not true).  Believe me, I know from being syndicated that people who carry your work can - and do - alter titles of your pieces without your consent (it's part of what you agree to allow).  After all, who is going to bother to read something titled:

"The Parents of 1 in 50 Children Report Their Kids to Be on the Autism Spectrum"

More accurate, yes.  Attention grabbing?  Not exactly.  That's why you won't hear it.

Now, the reality is that the 1 in 50 number is probably not accurate, but we also don't know to which end the pendulum would really swing.  That number only reports on children of a certain age, thus taking a measure of a younger group - like Jack's age - might yield a larger number.  Or not.  Many kids Jack's age who are on the spectrum haven't been diagnosed yet.  It's a subjective diagnosis.  We may never know with any certainty the true prevalence of autism amongst American children, but we can get some estimates.

What is important is for all of us - parents, teachers, professionals, and laypersons alike - is that we evaluate each study critically.  Don't fall victim to hype, sensationalism, or panic.  Numbers don't always reflect the full story.

Tuesday, March 19, 2013

Autism at the Aquarium

For those of you who don't know, we live in the bustling Southern metropolis that is Atlanta.  There are lots of things to do in this city that I love so dear.  We have an entire tourist attraction - The World of Coke - dedicated to the world's favorite soda, which just happens to call ATL home.  We have world-class baseball (sometimes) and several attractions dedicated to the 1996 Olympics.  There are monuments upon monuments to the Civil Rights Era, and many landmarks dedicated to the Civil War.  We have a mediocre zoo, but still a zoo nonetheless.

The crown jewel of our city's tourism is the Georgia Aquarium.  Boasting a gagillion (yes, that's an accurate measurement) gallons of water and lots of cool things like Beluga Whales, Whale Sharks, dolphins, penguins, and otters (my hubs's favorites), the Georgia Aquarium is a staple of childhood in Atlanta.

Unless your child has autism.

Brian and I have been multiple times.  We went before Jack was born a time or two, but bringing Jack to the aquarium has posed some unique challenges.  First, this isn't an attraction like Sea World.  The entire aquarium is enclosed indoors.  For a kid with sensory issues, that's a lot of sound reverberating off of everything.  Second, the place continues to draw massive crowds.  Again, not really ideal for Jack.  It really has all of the promises of a sensory nightmare.

But Jack's nearing 4 now.  Developmentally, he's more like 2.  2-year olds go to the aquarium.  Jack likes watching YouTube videos of dolphins swimming.  He's such a visual stimmer that we thought that if he could only get past his sensory issues, he'd probably LOVE getting to just watch the fish swim by.

If we could get past the sensory issues, and that was a big IF.

Now, for sensory kiddos, the aquarium does have several things going for it.  First, the lighting is very low throughout the facility.  Jack really doesn't handle bright fluorescent lighting that well, so the lower light level is ideal in helping him stay regulated.  Second, there is gentle visual stimulation everywhere.  The water flowing against the glass.  Fish softly swimming past.  Very quiet ambient music.  So, there are some pluses, to be sure.

But the people.  There are so many people and so much noise and how will he handle it all?

It was a question I was willing - no, determined - to tackle.  In the on-going quest to make the joys of childhood accessible to my boy, I so wanted to find a way.

It just so happens that Jack's birthday is 4 days away.  I wanted to make this happen for him, so I thought, When would be the best time to take him to the aquarium?  Well, we had always gone over the weekend and had seen how crazy it got, so weekends were out.  Clearly the week - mid-week, to be precise - would be the quietest time to go, as it would not tack on to a weekend and, as a result, convention traffic.  Jack's schedule stays so jam-packed during the week that we didn't know how we could - or would - manage to find the time.

That was then.  This is now.  We used to see therapy as something that we simply couldn't skip, as though that one session might be the breakthrough.  Here's the thing we've learned...Jack has made fabulous gains, but he is still very much disabled and autistic.  We can't make every moment about therapy; we need to live our lives to the fullest.

For the first time in 2 years, I canceled therapy for the day.  Not because we had a doctor's appointment.  Not because he was sick.  I canceled therapy so that we could go do something FUN.

Tuesdays are normally half-days for Jack at school, but since I canceled his therapies (speech and PT for today), we packed up the car and headed towards the Georgia Aquarium.  At first, there was a bit of angry squealing and whining as we merged onto the interstate (I think he is starting to know what routes we take to get to places, and we were going in the general direction of therapy), but the lull of the drive calmed him down.

Once we got there and parked, the line to get tickets was a short wait (more wait than Jack liked).  We had gotten advanced tickets for Jack and myself, but Brian still needed a ticket, so we waited.

Once inside, Jack was in awe at the first two tanks of fish right by the entrance.  The fish were called - get this - "Jacks", though I couldn't get him to stand still by the sign so that I could take his picture.  You know, that's a Mom-thing to try to capture, right?

We went first to the Cold Water Quest exhibit.  This is where you'll find the Beluga Whales, otters, and the penguins.  Jack was kind of ambivalent about the whales and penguins, though he wanted to get in the otter exhibit (he kept saying "Up!" when we were standing at the viewing window).  We got to see some whales rub up against the window and watch the otters nap (which they do floating on their backs...Brian really wanted to bring one home to be a friend to Mason!).

Next, we went to the Ocean Voyager exhibit.  This is where I think that Jack started to get a little perseverative.  He wanted to walk up and down the stairs - counting, of course - since there were some near the big viewing window.  I did get some pictures when we first came into the room.  The fish kept his attention for a minute or two before the stairs seemed more appealing.

Next, we headed into the Tropical Reef exhibit (I know that's not the actual name of the exhibit, but I can't remember it now).  Jack was getting very nervous at this point, so we started carrying him and - unfortunately - hurried through the exhibit.  I do remember seeing a sign that said that vinegar takes away the sting of a jellyfish, which means that a whole generation of people my age pee on jellyfish stings for no real reason (thanks Friends).

We knew at this point that we needed to leave.  Jack was making a beeline for more stairs, when we saw the one exhibit that we wished he could do - the Dolphin Tales show.  Prior to our aquarium trip, we showed Jack several YouTube videos of otters, whales, and other animals he would see during his visit.  The videos that Jack liked best were those of the dolphins jumping in the air, doing flips, and swimming through the water.  We knew that he wouldn't be able to sit through the Dolphin Tales show, but we hoped he could just see the dolphins.

We found that the Dolphin Tales exhibit was roped off prior to the show.  We walked up and asked if we could go see the dolphins prior to the show, but the staff tried to discourage us.  They said that we wouldn't really be able to see anything.  As my little boy was getting more disregulated by the moment, I told the attendant that my son wasn't going to make it until the show, so we would like to go see the dolphins.  They said okay.

They were right.  There is a single viewing window and - during non-show times - you can see nothing.  The dolphins swim by occasionally, but that's it.  While Jack couldn't verbalize it, I know that it would have delighted him to see the dolphins jump.  I wish it could have happened.  My stepmom went up to one of the staff members to see if there was anything that could be done so that Jack could see the dolphins, but she said no.  So, discouraged, we headed out to leave.

We did stop by the stingray pool while I got our parking validated, and Jack delighted in seeing the stingrays swim by.  In fact, he kept saying "Jump in", which is what he says at night when he gets in the bathtub, so we had to keep reiterating to Jack that the pool was for the stingrays ONLY, despite his desire to do otherwise.

We left after a brief stop in the gift shop to pick up a t-shirt and a couple of plastic figurines - a stingray and a dolphin - that Jack held for a few minutes before promptly forgetting he had them.  He lasted just at an hour.  I had thought that 15 minutes would be an epic failure, but 2 hours would be ideal.  Jack met us halfway between our two extremes.  I call it a success and a good start for similar outings.

My one request of the Georgia Aquarium?  Make the Dolphin Tales exhibit accessible to kids with special needs.  My stepmom and siblings stayed after we left to see the show.  They reported that the music was VERY loud and there were a lot of strobe lights.  You have to sit to watch the show, which is essentially a musical show that includes dolphins.  Not a great situation for a special needs kid.

All my kid wants is to see a dolphin jump.  Is there no way that there can be a sensory-friendly dolphin experience at the aquarium...particularly an aquarium funded by the man who funded Atlanta's major autism center?  Georgia Aquarium, that would be my one wish - my one hope - for our next visit...give my child an opportunity to see the dolphins in a way that he can tolerate.  Please.

Otherwise, it was a good day.

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Tips for Accessing the Georgia Aquarium with your special needs kiddo:

1. If you use a Disabled Parking Permit, don't bother looking for a handicapped spot in their deck.  You won't find one...they have hardly any handicapped spots.  The best parking is actually on the upper levels near the elevators.  Park there and take the elevator to the covered walkway.  It's a short, enclosed walk from there to the ticketing area.

2. Get your tickets in advance/on-line.  This significantly decreases the wait to get inside.  Besides, there are deals through their website (I got a deal for a combo Mommy and Me ticket plus parking for $34.95) or through AAA.

3. If your child tolerates a stroller, BRING IT.  There is still a lot of walking and there are elevators/wheelchair ramps everywhere.

4. Bring snacks.  I know that the website says no outside food, but I was more than willing to argue it.  My kid was (luckily) flapping and squealing at the security checkpoint, so they didn't kick up a fuss.  You never know if they have food that your kid can eat.

5. Go at an off-time.  That means in the middle of the week, during a school day.  Cancel therapy, check out early from school, do what you must to ensure that you are going at a time when the crowds will be a bit lighter.  It's probably the only reason why Jack lasted as long as he did.

6. Give you child plenty of sensory breaks.  Trust me, he or she will need it.

7. Don't get bogged down with expectations.  We went in not hoping to stay any particular length of time.  Despite the expense, we knew that we would simply leave before Jack went past the sensory point of no return.  We did that, and we ended on an okay note rather than carrying a screaming, flailing child to the car.

8. Prepare your child for the visit.  Look up videos on YouTube or the attraction's website.  Create a social story (we did).

9. Try to have fun.  Remember that fun looks different to our kids.  Don't be upset if your kid isn't gleefully pointing out fish.  Enjoy what your child enjoys.  Enjoy the fact that your child is happy.

Monday, March 18, 2013

Wandering and Worry


Image Source: Autism Speaks
Elopement: to abscond, run away

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Those of you who are Facebook fans of mine (and if you're not, you should be!) might have seen my earlier post about elopement.  I had gone to Jack's school to pick him up for therapy.  He had been doing what he's been doing most days lately, pushing a toy lawnmower back and forth along the sidewalk.  There is a red line - normally used to keep children held back from the carpool lanes - that he follows.  Back and forth.  Over and over again.

Lately, Jack has been very distractible.  It's been difficult to break him of some of these patterns and perseverations, even more difficult than usual.  He spaces out more and stares at everything but the ground and the world in front of him.

Today, Jack was pushing his lawnmower and he walked right off the curb and into the street.  I was close by, so I yelled "No Jack!" and ran up to pull him back on to the sidewalk.  I hoped that was the end of it.

It wasn't.  He did it again.  Then, he began to wander away towards the side of the building away from his classroom.  Again, I stopped him.  He went back to his usual back and forth pattern, so I relaxed for a minute as his teacher began discussing social stories with me and whether or not we found them successful.

That's when I heard the para-pro scream after him.  "JACK! STOP!"  I looked up and Jack was halfway towards the front parking lot of our school.  The para had already begun to sprint after him, and I joined the pursuit.  He wasn't responding to our calls.  It wasn't that he was trying to ignore us or that he was running away, he was simply walking off.  He was in his own world.  He wasn't noticing how far away he was, where he was going, or that anyone was calling him back.

Luckily, my boy is a very, very slow walker, because we were able to catch him.  We acted impervious to what had just occurred as we turned him around and directed him back towards the class.  I, on the other hand, was shaking.

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Why is it that our kids elope?  Other people might read this and wonder, How is it that a child can get away from 3 supervising adults?  

The first question really answers the second.  Some children do "bolt", engaging in a fight-or-flight response to a situation that is overwhelming, scary, or challenging.  Jack has bolted once or twice, but what is most common with Jack is that he will simply wander off.  It's not intentional.  He's not running from anyone or anything.  He just walks away.

I'd argue that Jack's wandering is the result of two key challenges he faces - his social delays and his sensory challenges.  Jack has no internal filter for what we typically consider to be dangerous, like walking in the street or walking away from caregivers.  He doesn't feel that same drive that the rest of us would to stay near his peers, his parents, or his teachers.  His preference for solitary play tends to drive him away from others.

Jack's sensory challenges lead to extreme distractibility.  He cannot help but look at anything and everything - except the road in front of him - when he is outside.  Usually, when I walk with him, he is looking up at the sky, or the trees, or something else that catches his eye.  He's not looking forward.  He's not looking to see where his Mommy is at the moment.

So you see...it's easy to see how Jack could just start walking and not really stop.  Given his communication challenges and the fact that he stays pretty quiet - except when he's stimming - you could then see how easy it might be for a child like Jack to simply wander away right under the watchful eye of several adults.

---

He's done it before, but perhaps a healthy dose of fear and worry is enough to raise the vigilance of this Mama and his team.  In a way, it just makes me feel certain that I can never let my guard down.  We do what we can.  We got one of those Big Red Safety Boxes from the National Autism Association a year ago.  Jack wears an ID tag on his shoes that lists his name, our phone numbers, and his diagnosis.

I'm not sure that there is much more we can do.  Vigilance is key.  Educating others is important.  Putting safeguards upon safeguards upon safeguards is critical, but any autism parent will tell you that keeping our kids safe is just not as easy as locking our doors and keeping an eye on them.

It was a situation that turned out well in the end, but served as a reminder that Jack is capable of simply wandering away.  I can't let my guard down.  I have to be careful and I have to remind everyone - even to the point of sounding paranoid - that they cannot let their guard down, either.

Friday, March 15, 2013

Audiologist Fail


How many audiologists does it take to get an accurate sound-field test on a nearly 4-year old autistic child?  Sounds like an awful joke, but it was more audiologists than they had on staff yesterday.

Now, Jack's no stranger to audiologists.  Ever since he started speech when he was 2, he has gone to an audiologist yearly to continue to confirm that he can hear all frequencies.  The first time he had a hearing screening he was non-verbal, so we didn't have concerns over Jack not hearing specific sounds.  Last year, he was tested by the school system (a mistake, in retrospect, by having him NOT see his normal audiologist).  This year, we took him again, and while he does have a speech sound disorder and cannot produce certain age-appropriate sounds (he can't make a hard /K/ or /G/, and he's developing a lisp, according to the school speech therapist), we really aren't concerned over his ability to hear those sounds.

Still, we take him anyway.  It's always good to get confirmation, particularly when we just don't know because his functional language is lacking.  Besides, there is definitely something to be said about routine in our kids' days/months/years.

As we entered the audiologist's office, Jack immediately locked in on the bead maze.  I breathed a sigh of relief.  It seemed like a good start.

I was wrong.

I have a question...why do all pediatric offices feel the need to have a TV on blasting some animated movie in the background?  I mean, seriously.  Okay, so maybe you want the TV on, but why does it always need to be so loud?

My boy couldn't handle Madagascar this morning.  Not at all.  He wasn't full-on melting down, but he definitely wasn't happy about it.  The fretting began.

To the audiologist's credit, she was super nice.  She came out, was very calming and smiling, and asked Jack if he wanted to play.  It wasn't her fault that he wanted nothing to do with the whole idea of that office this morning.

The last time we did hearing testing at this office, it didn't go fantastic, but it wasn't awful, either.  He did beautifully with sound-field testing, but hated the OAE testing (if your kids haven't had it done, it involves putting an earplug-like probe in their ears...but given that he hates anyone touching his ears, it wasn't a winner).  When he went through hearing clearance with the school system, they decided to only do sound-field testing, and he tolerated it like a champ.

This year was destined to be different.

He was still fretting when we got back to the sound booth, so the audiologist called in some reinforcements.  A second audiologist came in so that one could come into the sound booth with Jack and me and the other could operate the equipment.  The second  that we headed into the booth, Jack lost it.  The screaming and flailing began in earnest.  The audiologists did their best.  Jack responded to a couple of sounds, but was then unresponsive to the others.  Honestly, I don't think that's a factor of him not hearing the sounds, but it was a result of him shutting down.  He was screaming, slapping his head with his hands, and squeezing his eyes shut as tightly as possible.

The audiologist asked me to let her know when Jack was done. It didn't take long to reach that point.  He was DONE.

We came out of the sound booth and one of the ENTs was waiting for us.  He suggested that he could bring a few toys in.  The audiologist made it clear that he shouldn't bring toys that made noise or moved.  He brought a couple of toys that made noise and moved (idiot...I guess an MD doesn't make you smart).  We decided at that point to reschedule the testing for another morning.

This time, however, I'll bring reinforcements.

So, what did I learn from this year's initial failed visit with the audiologist?

Ask them to turn the damned TV down when we get there (or OFF...off is better!).
Say the word "autism" in the first sentence I speak to the audiologist (no, I didn't think about the fact that he wasn't yet diagnosed at his last visit more than 2 years ago, so it wasn't in his record).
Do NOT allow the old man ENT to bring Jack toys.
Bring reinforcements (I called Brian on the way to take Jack to school and told him that I'll require his presence at our next attempt).

From here forward, it is noted in Jack's medical file there that he is in fact autistic and that 2 audiologists will be required for each of his visits.  Super fun.  If you're going to do a hearing test, might as well tap all of their resources and go all out, right?

Our next visit is in 2 weeks, so we'll try this again.  For all of you super parents out there, how do you manage successful visits with the audiologist?  Please share with our fellow special needs parents what you do to help your child feel at ease?

Wednesday, March 13, 2013

Invisible Disabilties

Autism is truly an invisible disability.  The general public - hell, even people who are part of the special needs community but don't have direct experience with autism - seem to have this idea in their minds as to what autism "looks like".

Now, you and I both know that autism doesn't look like anything but really cute kids.  Now, most people who work extensively with kids on the spectrum, including their parents, gain a sort of sixth sense about autism...an autism radar, if you will.

Now, no one has ever suggested that Jack wasn't autistic in their comments to me, but that's not even the point.  The point is that the general public believes that autistic children cannot be happy, they cannot love, and they cannot make connections and care for others.  That is simply untrue.

It shows me each time that a person makes an off-handed comment that we have so much educating to do, especially when I hear these fallacies...

1. Autistic children aren't happy. Quite honestly, this is something I hear so often, yet I don't understand why anyone would think this way. Nowhere in the DSM does it state that children with autism can't be happy. Even parents of children with other disabilities will tell me that they are surprised to hear that Jack has moderate autism, because he looks happy. Well, happiness - or a lack thereof - has NOTHING to do with autism.

2. Autistic children never make eye contact. Not necessarily. Again, nowhere in the DSM does it say that a child with autism never makes eye contact. In fact, I've never met a child on the spectrum who has never looked someone in the eye. What is far more common is fleeting eye contact and avoiding eye gaze, particularly in stressful situations or up close.

3. "But he's so cute!" I know that this should be obvious, but being cute doesn't preclude you from being disabled. I might be biased, but some of the cutest kids I know have special needs. In fact, I think that autistic kids have one thing absolutely in common...they are some of the most beautiful children you'll ever meet!

4. Autistic children aren't affectionate.  Not necessarily.  Jack's not affectionate, but that's not to say that other children on the spectrum aren't.  In fact, I've known many autistic children who are cuddle bugs.  There are no absolutes in autism.  None.

5. Autistic children aren't empathetic.  I've written about autism and empathy before (if you want to read my thoughts on this, click HERE), but I think that people have an incorrect internal definition of empathy.  What people want to know is this...do autistic children feel love?  I'd argue yes.  They might not be able to identify it as that particular emotion, nor might they express it in the ways that NTs do, but that doesn't mean that they do not LOVE.  It's there.  I've felt it.  (Read THIS to see why.)

Really, there are so many permutations of this same scenario that play out day by day by day.  We hear people who have no understanding of autism or it's actual presentation.  Autistic children are all geniuses.  Autistic children are all cognitively impaired.  Autistic children cannot speak.

Again, it's the absolutes.  There are no absolutes when it comes to autism, with the exception of the broad categories of core impairments in communication, socialization, and the presence of repetitive behaviors and/or restricted interests.  The actual presentation of those characteristics varies, but none of our kids does all of the things that people think of when they think of autism.

That's why we must keep educating.  We must keep showing the world the reality of autism.  Our children need this.  We cannot allow stereotypes to define them.  We have to help our children define their autism.

Tuesday, March 12, 2013

Not My Fault

"He just does that because he knows you'll give in."

---

I wish you could be a fly on my wall. I wish you could see the number of times that he screams because something isn't right and how I don't always bend over backwards to make it okay. I get hit, screamed at, and I watch my boy lose control of his own body. I sit nearby - waiting - as the storm gathers strength and eventually reaches its peak. I wait it out, trying to keep my own emotions in check, as I watch my body struggle against himself and a world that seems so utterly out of touch with him and his needs.

And you're going to tell me this is my fault? What more could I do?

Here's the thing I think you miss...his interactions with me are in a natural setting. It's real world stuff out here. It's not controlled. This the world of school, home, and everything in between. This isn't a 1:1 highly controlled setting. This is real life - what we're busting ourselves to work through every day. A place that we're trying to help him cope with in a way that doesn't take away who he is, but in a way that preserves the person within.

Before you label it as that word that people seem to love to throw around with autism - behavioral - I'd argue that your frame of reference is skewed. When he is struggling, he doesn't make eye contact. If he was doing it for attention, wouldn't he look at me to see if I was watching? Well, he's not. Would he not calm down once given his way if this was a tantrum? Well, he doesn't. After a while of not getting what he wants, wouldn't he calm down with the realization that his attempts are fruitless? Well, he doesn't; the meltdowns are often over an hour long.

And you want to know why? Because it's not behavioral. Because, as with all things with our children, it's multi-factorial. It's not just behavior. It's not just sensory. Hell, it's not just autism. It's a combination of so many factors that come together to equal that one perfect storm. It's that each environment, each situation, each person is a new challenge to navigate.

Enough.

I will no longer listen to how my parenting instincts must be all wrong simply because my child is autistic. I will not allow myself to feel like I can't do anything right as a parent. Autism didn't erase my parenting abilities or instincts.

If anything, it heightened them.

I will learn to say that I know my child best. I will surround myself with people who understand him. I will not feel that any meltdowns are all my fault, because I cannot control every single aspect of the world in which my child exists. I will not feel bad for not making every second of every day therapy.

I will let him be a child. I will support him. I will not deny him the things that he loves simply because they are seen as perseverative. I will not stop the flapping, the pacing, the humming, and the stimming. I will let him feel some control over his own body.

Because I know that supporting him and letting him be himself isn't taking the easy way out. It's standing up to society and declaring "This is who he is!" That is a much harder task than any other we face.

And I will no longer let anyone make me feel bad for doing so.

Wednesday, March 6, 2013

My Dearest Friends (A Spread the Word to End the Word Contribution)

Author's Note:  I wasn't going to write this today.  I wasn't.  I reposted one of my many prior posts on the R-word, and I was going to leave it at that.  However, that was before I saw not one, not two, but three different places on Facebook today where people were DEFENDING the use of the R-word.  Today, of all days, is the Special Olympics "Spread the Word to End the Word" Day.  It's a day to pledge to show respect to people with disabilities by ending your use of the R-word.  That doesn't seem like too much to ask.  

Apparently, for some, it was too much.  The advocacy clearly is not coming to a close on this subject.  This needed to be said...

---

My Dearest Friend, Family Member, or Acquaintance, 

It was in jest.  I saw it there - in black and white - on the screen before me.  Maybe it was a picture of you contorting your face.  Perhaps it was a self-condemning remark.  Sometimes it's a joke.  Others, you're just sharing someone else's joke.

It's the words you use that strike me to my core.  SPED.  Special Ed.  Retarded.  You use them in reference to your contorted face.  Your self-condemning remark.  Your joke.

Retarded.  I see it often.  It's become so ingrained in our vernacular that we don't think twice about using it.  You don't think twice about using it, even though I make it no secret that I have an autistic child.  I don't think you do it to be malicious; you do it because it's what you have always done.  It's an unfortunate bit of slang that has worked its way into pop culture.  You don't say it to wound; you say it because everyone else does.

I try - as nicely as I can - to educate you on just how much seeing that word hurts me, hurts my little family, and hurts my sweet little boy and others like him who have a disability.

That's not why I feel the need to write this letter.  I have to write this because you continue to defend it's use.  You protest when I try to educate.  You say "I wasn't talking about Jack" or "I would NEVER call a disabled person retarded".  The worst is when you throw it back on me.  The worst is when you say "Don't be so sensitive.  It's just a WORD."  Then, once I have been accosted for defending my child - who cannot speak for himself - I feel silenced.  I feel like "What's the point?"

Just a word, you say?  Let's examine that word.  The definition of the word "retarded" on the online version of the Merriam-Webster dictionary is the following:

Slow or limited in intellectual or emotional development or academic progress.

My kid meets that definition.  So, to answer your assumption that you weren't talking about Jack or other disabled persons, well, yes you were.  The definition of the word "retarded" is referring to people, like my little boy, who have disabilities.  Nowhere in that definition does it include the following:

Clumsy
Stupid
Dumb
Less Than Anyone Else

Yet, when you call yourself or someone else "retarded" as a synonym for "clumsy", "stupid", "dumb", or "less than someone else", you connect those connotations to the word "retarded".

Still not convinced?  Since you think it's still okay to link a word like "clumsy" or "stupid" to the word "retarded", what if we were to link another word describing my son to those terms?  What if we substituted "retarded" with the word "autistic"?  What if each time you dropped something in your kitchen, or tripped, or said something without thinking, you said "I'm so autistic"?  Doesn't that sound horridly offensive?  Substitute any other disability, or condition, in the place of "retarded" and you are left with what can only be described as hate speech.  

Better yet, extend it out to any attribute describing a whole group of people, like race, gender, or nationality.  Use those terms in place of the word "retarded".  That sounds pretty horrible, too.

What makes "retarded" any different?  What makes it different is that it is so ingrained in our culture that people are clinging to it like dandelion seeds in the breeze.  No one wants to admit that they've said something that sounds bigoted or ignorant, so they defend it in any way they can.  They defend it by making the offended parties feel worse.  They defend it by citing its use by the majority.

Let me remind you, though, that majority opinion is not necessarily the right one.  Look back to WWII Germany.  The Deep South under Jim Crow.  America prior to women's suffrage.  Silencing a group of people by telling them that their offense is wrong - that they're being too sensitive - does not make your actions right or just.

You might follow that with "There's nothing wrong with the word.  People should be able to use the word, but let's take the hate out of it.  If we change it's meaning, then it won't be hurtful."

Here's the problem with that...you can't rewrite history.  You can't rewrite the dictionary.  Your very use of the word retarded, as you used it to describe yourself or someone else as stupid, clumsy, or slow, was derogatory.  It was derogatory towards you or someone you know.  That in and of itself is infusing the word with hate.  Unless we go back to a time in which the word "retarded" is only used in medical literature, as a way of describing a person with delays, then the word "retarded" will still carry it's negative connotation.  Let's face it - I've yet to see anyone use the word "retarded" in a positive light.

And about medical vernacular...did you know that the word "retarded" is being replaced in most medical and educational literature?  Children like my son are referred to as having special needs, developmental disabilities, and cognitive delays or impairments.  

You might think, "It was acceptable once in the medical community, so what's the big deal?"  Sure it was.  So were the terms "moron", "idiot savant", and "childhood schizophrenic".  People like my son were locked up in institutions from an early age.  Subjecting children to "aversives" or punishments or "treatments" like electro-shock therapy were common.  Just because it was done or said once doesn't make it right.  Society and the medical community learn and grow and change with the advent of new understanding.

And that's what I'm asking of you.  I'm not asking you to repent for your previous sins with the use of that word.  I'm asking you to make a change going forward.  Believe me, there is nothing cool about using the word "retarded".  There's nothing cool about laughing or agreeing with someone else's use of it.  

You may get push back.  I obviously have, or else I wouldn't have to write this letter.  The true measure of courage, or someone's fortitude, is sticking up to one's friends and family in the face of something wrong.  So, I give you permission - use Jack as your reason.  Tell your friends that you know a wonderful little boy who has autism and that their use of the word "retarded" is very demeaning towards people - like that sweet little boy - who are disabled.  You may find more support than you imagine.

But please, I implore you, change your words.  Change for you.  Don't place the blame elsewhere.  Privately acknowledge to yourself that using that word is wrong and move forward.  Be a better person.  Be the change we'd all like to see in world.

Remember this - words reflect attitudes.  Attitudes reflect communities.  Communities reflect on society.  Society reflects on us all.  Change your words, and watch attitudes, communities, and society change along with them.

---

Need more reasons why to not use the R-word?  Read the following posts I have published on this very topic:

Tasteless
Choose Your Words Carefully
Someone Let Mama Bear Loose
The "R" Word
 
After that, go to http://www.r-word.org/ to take the pledge to end your use of the R-word.  You'll be a better person for it, I promise you.

Monday, March 4, 2013

Setting Yourself Up for a Good IEP

On the heels of yesterday's post about our epic IEP meeting a couple of weeks ago, I thought I'd share some of my tips for a successful school relationship and - hopefully - IEP.  Bear in mind, all school systems are different.  Without revealing too much about my exact location and Jack's school (for privacy reasons, obviously), I'll just share that we don't live in a school system that is particularly known as having world-class special education services, but we don't live in one of the worst by any means.  We don't live in a state that is particularly well known for good autism services, but we're not the absolute worst, either (though we still don't have an autism mandate...grrrr...).  I'd call our school system pretty run-of-the-mill.  Jack's elementary school is ranked as one of the best in the state...for general education.  We live in a pretty affluent suburb in what is a sprawling school district encompassing large urban neighborhoods as well.

Big disclaimer...I know that not every school system works like ours.  I know that these tips won't work for everyone.  These are just suggestions - ways in which I have cultivated relationships and prepared for IEPs and IFSPs.  Please don't think that these things are guarantees by any means, but just some tips that might help you along your way...


1. Don't let your IEP meeting be the only time you show your face at your child's school each year.  By this, I don't mean that you should go up and stir up trouble, but you should be a presence at your child's school.  If you work, still take the time to volunteer at least once a year.  It doesn't have to be on a weekday.  Volunteer to bake for a PTA Bake Sale.  Work at a playground clean-up day.  Do what it takes for someone - preferably in the administration - to know you and have a favorable impression of you.  As an example, I'm a Room Mom in Jack's class.  I volunteer at the parent greeter desk for two 3 hour shifts each month.  You have to give - of your time, talents, and resources - if you want to receive.

2.  Join the PTA (or some school-wide organization).  A big mistake I hear from parents is that they keep to their own in special education (if they try to reach out to the school community at all).  Just because your child is in special education - even self-contained classes like mine - doesn't mean that it's not your child's school.  Get involved, because your involvement makes it a better place, and those connections will undoubtedly help your child.

3.  Make connections between your child's special education class and the school's general education classes.  This is even more important if your child is in a self-contained class like Jack's.  If your child's school is anything like mine, there may be people who are unaware that there is even a special education program - or a preschool special education program - within their four walls.  Educate people!  This year as Room Mom, I helped our class participate in the school's major fundraiser - a raffle for baskets of donated items put together by each class - for the first time.  Not only does this alert people to your presence in the school community ("We have a Pre-K program?!?" was a common refrain during this process), but it actually helps the morale of your child's teachers.  Remember, special education teachers can get left out of the school community, too.  Jack's teacher mentioned to me how great it was to see her class's name on one of the charity baskets this year.  That's important!  We need to make our kids' teachers feel like they are a part of the school, too!

(As an aside...don't worry, if you have a little one in preschool special education, the older kids will most likely know who your child is!  When I have picked Jack up at school, I'll see classes of 4th or 5th graders - particularly the girls! - all yell "Hi Jack!" in unison.  I was even informed by one of the school counselors that one of the members of the school's safety squad, a 5th grade girl, always speaks to Jack each morning as he walks down the hall with his para-pro.  Jack apparently gives her a grin.  I was told by the counselor to watch out, because my son has a 5th grade girlfriend.)

4.  Show your appreciation - to everyone.  Sure, you probably send Christmas/End-of-the-Year gifts to your child's teachers and therapists, but what about the front office staff?  Does your child have nursing needs or visit the clinic often (mine does)?  Then send a little something to the school nurse.  Talk to your Room Mom about participating in Staff Appreciation events at school (they all have them).  At holidays, I always bring a big plate of cookies or some other goodies for the front office/nursing staff and administrators to share.  I also bring a card - usually I sign it from our whole class - telling them all just how much we appreciate all they do to keep our children safe and help them grow.  If nothing else, I learn their names and say hello when I walk around the halls.  Believe me, these gestures matter.

5.  Share knowledge.  I tend to send emails to Jack's school team once or twice a week, or as needed to share information.  For example, I didn't want Jack's teacher blindsided by his GI issues over the past week, so I sent her an email and clued her in to what was going on and what we were doing to help treat it.  When I get updated private evaluations, I share the scores and alert his school team to changes in private therapy goals.  When Jack goes to Dr. DP, I share his input.  This past visit, he was very complimentary of Jack's school program.  I shared that with them, as I think it helps everyone feel good about what they do when they receive a compliment.

6.  Know what you want (and what your child realistically needs).  Don't go into an IEP meeting with no idea as to what placement your child should have.  If your child is new to the school system, tour some placement options (ask around if you don't know what they are).  If your child has been in the school system, visit your child's class (Volunteer!  It's best way to observe without asking to specifically observe.).  Observe what's going on and see how well your child fits in.  I've always felt that my child should - ideally - have peer models for verbal and social behavior, and yes, you can get this in self-contained classes!  See if your child's current placement "feels" appropriate for your child's needs.

7.  Provide a "wish list" of IEP goals to your child's teacher about 2 weeks prior to your meeting date.  Don't have a wish list?  Make one!  I keep a running list going and I supply about 4 - 5 goals to the IEP team ahead of time.  You should have input into your child's goals and those goals should be practical skills to meet a particular need.  You may not know what the next step should be in speech therapy, and that's okay, but you might decide that you'd like your child to be able to tell you - either verbally or with PECS - something that happened in their day.  Mention it to the IEP team and let them help make that goal attainable for the upcoming year.  I think supplying a wish list lets the IEP team know that you are an active participant.  On that same note, don't send a list of 20 goals, because that's not realistic.  The school will have academic/therapeutic goals of their own, and they should be able to work on those as well.

8.  Go in with a specific "thing" you'd like to get, and bring support to back-up your child's need for that particular placement/service/accommodation/goal.  It's important to have a goal for your child's IEP, but make sure it's a realistic goal (don't ask for extra PT for a child who is can adequately ambulate around the school, for example).  Maybe you'd love to see some assistive technology written into the IEP.  Maybe you'd like a 1:1 aide.  For Jack's most recent IEP, I wanted an extra 30 minutes of 1:1 speech each week.  I came in with a letter from Dr. DP in which he stated that Jack needed the extra 1:1 pull-out time.  I also knew that Jack would qualify for articulation help this coming year, and I had printouts of articulation milestones to back me up.  I planned what I was going to say - that Jack needed the 1:1 time for articulation and due to his distractibility in the classroom - even though I never needed to say it.  Also be prepared to compromise, and have an acceptable "back-up" goal in mind.

9.  Be prepared.  I go into every IEP meeting with 2 binders full of information; one with Jack's medical/therapeutic records (I take the previous year's records only), and the other contains Jack's school records.  I take all of his school records, including past IEPs/IFSPs, important emails, progress reports, and work samples.  Throughout the year, I also request data sheets (usually at progress report time), so I bring those as well.  As soon as I get the meeting notice, I also request a draft IEP prior to the meeting.  Be realistic with regards to the time-frame in getting the draft.  I usually ask for 2 days prior.  Be flexible.  This past IEP cycle, one of Jack's therapists was out-of-town for a death in her family, so I understood that I wouldn't be getting input from her.  One of his other therapists was being evaluated for Teacher of the Year (a very good thing!), so I understood that her time was limited in getting goals to me ahead of time.  Don't demand the whole novel; just ask for a couple of chapters...something from which you can work.  Ideally, I'd like to get the following in a draft IEP:  most of the goals (if you don't have all, I think that's okay), and your child's Present Levels of Performance (PLOP - usually at the front of your IEP...it's what you base your goals on).  Review the draft, mark it up, and make sure that you agree with the PLOP.  If not, make notes or create your own PLOP.  Type it up and submit it at the IEP (ask to have it included in the "Parent Concerns" section).  Also, read up on special education law (I love the WrightsLaw books), and be sure to know your parental rights.

10.  Don't show up empty handed.  Besides the "prep" work I mention above, bring three other things with you.  First, always - ALWAYS - bring another person.  Even if you bring your spouse, bring someone else who can look at the situation somewhat objectively (and who won't get riled up...so don't bring the volatile grandparent/aunt/uncle to the meeting).  I usually bring Jack's special instructor, with the thought that she has worked the longest with Jack and knows him best, and she can provide good input to the team.  Second, bring food.  Don't come to the meeting without coffee/water/sodas and some type of snack.  Nothing big...muffins or cookies will do.  In fact, I approach every meeting at school with cookies or some baked good; it's a good icebreaker.  Third, bring compliments and patience.  Remember that most people working with our children do so not for the money or the prestige, but because they love working with special needs children.  Acknowledge the things that have worked well over the past year.  Let them know what you liked and that you appreciate the time they put into your child.  Allow them time to explain their viewpoints and have an open-minded exchange of ideas.  Check your adversarial tendencies at the door and assume that the team wants to help your child.  Don't be naive, but try to not assume the worst.  The team will pick up on your combativeness and will respond in kind.

I think the most important thing to remember is to cultivate a good relationship with the school, the administration, and your child's team.  Mutual respect and kindness goes a long way, whereas combativeness does not.  There are certainly times and situations in which you will have to fight for your child, but don't start out that way.  Remember, too, that moves that you might not consider to seem "adversarial" - like hiring an advocate or bringing a tape recorder - might be interpreted as such.  That's not to say that you shouldn't do those things (there are certainly instances in which either or both are needed), but know that the school will be defensive.  Don't insist on "your way or the highway", remember that you're part - albeit a very big part - of a team, and be willing to compromise on some things.  Prioritize.  Don't fight each and every IEP goal if what you really want is more speech; you'll be more likely to get what you want if you've conceded to the school a little bit.

Be a friend to your child's school.  Be involved to the greatest extent that you can.  Be informed, be prepared, and be your child's best - and first - advocate.  You can do this, mamas (and dads!).

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What are some of your personal tips/tricks to a good working relationship with your child's school?  How do you work towards a successful IEP meeting?

Sunday, March 3, 2013

What A Good IEP Looks Like

This is what a good day at school
looks like.
I've been running on all cylinders, changing diapers, and trying to help my boy feel some relief for the past 10 days.  It's been a whirlwind and I think - I hope - we're turning a corner on Jack's antibiotic-related GI issues.

Of course, the day before we headed down this road, we had that all important acronym that strikes fear into the hearts of special needs parents everywhere.

I'm speaking - of course - of Jack's annual IEP.

Now, our IEP was actually moved up a couple of weeks from when we originally thought we'd be meeting.  It was due by March 12, but we had learned that Medicaid wanted his new IEP before they would approve his pre-authorization for the next 6 months of OT services.  So, we pushed the meeting up.

I hate rushing.  Have I ever mentioned that to you?  I'm a planner.  I probably plan things to the extreme, but what can I say...I'm thorough.  So, the thought of pushing Jack's IEP up a couple of weeks was less than appealing.

---

A couple of weeks before the meeting, I received that obligatory meeting notice, along with a worksheet to provide some parent input into what worked this year, what needed to change, and what placement/services we thought our boy needed next year.  I thought about what others had said to me - family, mostly - about their thoughts on Jack's placement after seeing him in his current class.  The consensus was unanimous; his current class - a self-contained preschool special education class - was a good fit.  We agreed.

Ever since last year, I kept a running tally of goals that were on my wish list.  While my goal wish list included about 17 goals, I knew that I couldn't put them all into Jack's IEP.  Jack's special instructor had already told me that some of the goals were a bit ambitious, so I tempered them down and focused on what we needed in the coming year, and that was to get Jack ready for some of the increased challenges of Kindergarten.  In the end, I settled on 4 goals that I emailed to Jack's teacher as being the ones that I'd like to include this coming year:

- Pulling up/down pants (to give him some measure of independence in his toileting routine)
- Eating an appropriate amount of food at lunch in an appropriate time-frame (he won't get 1 hour lunches in K...)
- Requesting - either verbally or non-verbally - the need for a sensory break
- A parallel play goal

We then got to thinking about services.  I thought that there was a fair likelihood that Jack's PT services might decrease next year, but Dr. DP wanted me to fight to keep them, so that was what I intended to do, if not a little half-heartedly.

Here's the thing...I like to go into every IEP or IFSP with something in mind that I'd like to see obtained.  Something for which I'm going to fight, all the while hoping that the "fight" won't be a fight at all.  So as I reflected on my boy, what this year was like, and what I'd like to see for next year, it hit me...more speech.  I wanted my boy to get an extra 1:1 pullout for speech each week.

He currently gets 1 hour of speech each week when his school SLP pushes in to team-teach the class 2 days a week, but I thought that with his sensory issues and the wide variety of speech needs he has - plus his potential! - that the 1:1 time would be beneficial.  So, I did what I normally would do; I did my homework.  I found evidence in his progress reports of distractibility affecting his performance.  I saw places where goals - specifically oral-motor goals - weren't met.  I also knew that this year Jack would qualify for articulation services for the /k/ and /g/ sounds, thus the 1:1 time would be extremely beneficial for working on articulation.  I also got Dr. DP to write a letter of support, one which he was only too happy to provide.  He loved the idea.

---

The morning of the meeting, I bought coffee and muffins.  I brought my 2 big binders with Jack's pertinent medical and school records.  I brought the Hubs and Jack's special instructor.  I was going in as prepared as I would ever be.

Let me say this...this was more than a good IEP meeting.  This was EPIC.  This meeting will go down in special education history as one of the best IEP meetings ever.

Really it started all with a PLOP.  (That's Present Levels of Performance, for those of you who don't know the acronym.)  When his teacher began to read off their assessment of his PLOP, I actually felt great about where my boy had been and the people he had worked with this past year.  Why?  Because they GOT IT.  Their assessment was - in my opinion - spot on.  Not that I like to hear my kid's deficits - I don't - but I like hearing people who see my boy's strengths and weaknesses and know what needs attention the most at the present time.

We moved on to his goals.  We tossed some around, tweaked others, and debated time-frames for mastery, but I felt like a full participant in that process.  Even better, all of my desired goals were in there.  I felt listened to and respected as the foremost expert on the little student that is Jack.

We began to talk about needed accommodations.  There have been several put in place for him this past  year, but none were formalized...until now.  We wrote his Rifton chair into the IEP.  We also discussed implementing a choice board for him - at his SLP's suggestion - and wrote it in.

We then talked about the section we breezed past last year - medical concerns and accommodations.  Everyone agreed that we needed some kind of choking plan in place for this coming year.  I expressed my desire to have a CPR/Choking First Aid-trained staff member present in his classroom at any point that he was presented with food.  Everyone agreed - and stated that we needed to clarify such things for subs, etc. - but someone raised the concern that not everyone was CPR/First Aid trained because the school system made them pay for it themselves.  Now, as an interjection, I think it's RIDICULOUS that our school system would make teachers - who make so little to begin with - pay for their own CPR certification!  Now, here's where some special education law knowledge helps out...I asked if I could add it into the section that mandates staff training that all full-time personnel in Jack's classroom have to be CPR/First Aid certified.  I also confirmed that it would mean that the school system would pay for that training.  I could see the smiles spread across the faces at that table.  Jack's teacher said yes, but did I mind if they put it in the minutes that I was requesting this training for the teachers?  Of course I didn't mind...I don't mind being the bad guy to the administration if it gets my son's teachers what they need to keep him safe.

We all agreed that Jack's current placement - self-contained special education - was the most appropriate.  In fact, no other placement options were offered, which was fine.  We thought his placement was best, anyway.  He would start doing full-days at school, at first only 2 days a week, then building up from there.  The other days, he would still go half-days.  Then, we got to the part everyone loves...services.  OT would remain the same next year - 2-30 minute sessions a week.  PT would drop to a "monitoring" level - 30 minutes per quarter - which I was just fine with accepting.

Then came speech.  I spoke up about wanting the pull-out.  We tossed it back and forth; everyone agreed it would be great for Jack and that he needed it, but how to work it out logistically?  How to cram more time into the SLP's day for her to see my boy?  Then, she had an idea...she would get him after breakfast one morning a week - right before school started - and see him for an extra 30 minutes, bumping him up to 3-30 minute sessions each week, after which she would drop him off at music therapy along with the rest of his class.  It was a win-win for all, and later Jack's SLP told me that she wished she had thought of the 1:1 pull-out before the meeting.  I was elated.

As the meeting wound down, we got to the portion that I forget to consider prior to the meeting every time - ESY (Extended School Year).  Jack got ESY services last year, delivered as a classroom option. Before I could even speak, everyone agreed that Jack needed ESY again this year.  No fight needed.  When it came to designing his ESY program for this year, I mentioned that doing the classroom option would mean pulling him out of private therapies for the duration of ESY, which would likely cause the very thing we were attempting to avoid - regression.  So, I requested that Jack only receive speech and OT services over the summer.  Everyone agreed.

We concluded.  After I got the finalized IEP, it truly is a mish-mash of accommodations, goals, services, and personalized programming.  It is definitely unique, but isn't that as it should be?  An IEP should be just that - individualized.  It is crammed full of various things that were carefully considered and agreed upon to be what Jack needs for the next year.  It is a document that a group of educators, therapists, and parents collaborated - truly worked together - to develop.  It encompassed what I have always pictured an ideal IEP would represent - the meeting of minds to benefit the educational well-being of a child.

I left that meeting feeling great.  Sure, I was happy about what we accomplished, but I was happiest about one thing - that the people working with my boy CARE.  They care about him.  They want what's best for him and see him for who he is.  They are willing to put in the extra effort.  They want him to succeed.

I left with a sense of peace.  Peace in that I know - I finally know - that each day I leave my boy with people who love him and want him to do well.  People who are genuinely trying to do best by him.  That's really the ultimate service to receive - teachers, therapists, and staff members who want to give our kids their best.

Friday, March 1, 2013

Dreaming

Jack - 7 weeks old
I went in his room, quietly, hoping to steal in and back out faster than I'll be able to pull myself away.  I just need to know - need to check and make sure he's okay - as mamas are wont to do.

Tip-toeing over to his crib, I place my hand gently on his back.  I feel it.  The rhythmic rise-and-fall of his chest, signaling his breathing.  I've done this every single day since he started sleeping in his own room 3 years and 8 months ago.

I stand there, my hand frozen on his back, watching my sleeping baby.  Does he know that my heart beats for him?  That each day brings more joy than I could ever have imagined because of his presence in the world?  That I feel each triumph and struggle he faces with more intensity than I feel those emotions for my own accomplishments and challenges?

Does he know just how important he is?  That he means the whole world to the woman standing there at his side?

I wish my sweet boy a beautiful night's sleep.  I wish him to let the cares of the world drift away and dream a million happy dreams, because I dream those dreams for him.

Snowball Effect


WARNING:  This post has a lot of talk about poop.  Seriously.  But folks, I've been up to my elbows in it this past week plus, so it's what you're going to hear about today.  You're going to hear about when medication goes horridly wrong and doctors kind of ignore your pleas.

There's also some language in here, but I'm exhausted, frustrated, and tired...and sometimes an F-bomb is the only word to accurately describe the situation.

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It's been a week and a half in the Reinventing house.  We've gone from the high of the Greatest IEP Meeting of all time - and yes, I'll write about that soon! - to an epic medication battle.

We have not had the best luck with medication over Jack's young life.  Those long time readers of mine might remember the Prevacid debacle of 2011 (which you can read about in all of it's gory detail HERE and HERE).  Jack has always seemed to have funky reactions to medications, which has led me to the totally unproven hypothesis that medications just might react differently in the bodies of individuals with different neurologies and developmental conditions.  To me, it would make sense that if your brain and how it works is designed a bit differently - for that matter, if you develop differently than the average enrollee in a clinical trial - the possibility exists that medications might work differently in your body or have different side effects.  After all, how many medications include a clinical trial on autistic children or children with developmental disabilities?  As I said, that is TOTALLY UNPROVEN, but just my theory.

But I digress.

So here we were, dealing with week 5 of Jack having a persistent runny nose with post-nasal drip.  It was gagging him, making him vomit (at school...yikes!), and wigging him out each time the snot ran down on to his overly sensitive little face.  I kept hearing from our doctor's office that it wasn't an illness and that he was showing no signs of a sinus infection and that - as with so many things with our kids - we should just wait it out.  Well, 5 weeks had been long enough.

The straw that broke the camel's back was his eczema.  While I don't think he feels the itch of the eczema, he is so sensitive that the roughness of his skin will cause him to pick.  And pick.  And PICK.  Which then causes him to bleed.  His entire back looked scaly and read.  The baby softness one would expect with his skin was replaced with a texture akin to snake's skin.  Clearly, not ideal.

Now, no mama likes to take her kiddo's shirt off at bath time and find open sores all over his arms, back, and stomach.  Something had to give.  I was sick of being dismissed by our doctor ("it's just dry skin season!") and being made to feel like autism was an excuse for not treating an issue ("autistic kids just pick at themselves!"), so I made an appointment with Jack's pediatrician to ask - no, to DEMAND - that we address the drippy nose and his poor, inflamed skin.

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In we trotted to the doctor's office.  As with nearly every visit, the doctor discovered that Jack had some fluid in one of his ears.  Some of his many sores looked as though they might could get infected, so she thought an antibiotic was indicated.  That was it.  I asked about our original reason for coming in - the drippy nose and his skin - to which I was told...

"Well, he might still have a cold or a sinus infection.  And it's just dry skin season!"

NO.  I wasn't doing this again.  I told her that he didn't have a sinus infection - his drainage was clear - and that the skin was getting worse despite using hydrocortisone and maximum-strength Eucerin.  I said that we needed to do something, that we had done the "wait-and-see" thing long enough.  She ended up ordering him to go on daily Zyrtec indefinitely and to start a prescription hydrocortisone to help with the eczema.

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Lo and behold, mama knew best.  Both the skin and his drainage cleared up with the addition of medication to his daily routine (not that it's easy to administer either one, but still...).  No snot, scales decreasing, fewer sores...it's a good thing.

Except...the antibiotic has torn my kid's already sensitive stomach up.  The first few days were fine.  We had Jack's IEP meeting on Thursday and he started full-day preschool special education on Friday. All medications - so far - were working just fine.

Until I picked him up from his first full day of school on Friday.  He was wearing his back-up set of clothes, and I found out it was because he had a blowout dirty diaper all over the place.  Yikes - and not the best way to start full-days - but isolated.

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Tuesday rolled around and the diapers weren't getting better.  In fact, they were coming with increasing frequency.  Figuring that it was the antibiotic and not the Zyrtec that was tearing him up, I called to ask - okay, plead - for us to switch to another medication.  The triage nurse was very nice.  She informed me that since we were on Day 8 of the antibiotic, it was either working by now or not.  So, why didn't I bring Jack in, they would recheck his sores and the minute amount of fluid in his ears, and if all was clear they could take him off of the antibiotic.  Otherwise, they would switch him to another medication.

Fair enough.  After 2 hours of therapy that afternoon, Jack and I headed over to the pediatrician's office for the second time in as many weeks.  I knew that the sores were looking better.  Jack was in good spirits.  All was well...or so I thought.

It turns out that the fluid - that damned fluid that wasn't even the reason for our initial visit - was still present in his ear.  The fluid that hadn't bothered him at all.

And the doctor wasn't going to put Jack on a different antibiotic.  On the contrary, she wanted Jack to stay on it.  I pleaded with her.  Look at his diaper rash!  He's having 3 - 4 loose diapers a day!  All of this to clear up a tiny amount of fluid that he didn't even notice?!?

You betcha.  Because our pediatrician is obsessed with medicating for anything ear-related, but it's pulling teeth to get her to address anything that is actually causing a problem, like 5 days of loose stools.  Instead, I was told that this is what antibiotics do, as though that makes it okay.

So, we left with basically an hour lost out of our day and no real answers, other than the fact that we needed to come back in a week to once again recheck and see if that f&*%ing fluid had cleared up.

---

Or so I thought.  It's now Friday morning and he's had upwards of 4 horrid dirty diapers each day since last Friday.  And he's irritable.  And he's not sleeping.

Today, he had no less than 6 dirty diapers prior to 11 AM.  He woke up this morning at 2 AM and never went back to sleep.  Otherwise, he's been in good spirits, even though his day sheet seems to indicate otherwise.  However, after the clinic at school called at 11 AM to alert me to the insane number of times they were doing diaper changes, I decided to call the doctor.  Again.  I knew that I wasn't going to really get anywhere, but school was pleading for a solution, as was I.

I got a different triage nurse this time.  I mentioned my concerns and that how - after so many - surely my boy must be getting a little dehydrated.  Her suggestion?  Give him Gatorade or Pedialyte, plus feed him rice and pasta.

I had to laugh, and I got a little annoyed.  "Have you even read my son's chart?!?"  Yes, it's a big practice, but he has autism, SPD, dysphagia, and eats a very VERY limited diet.  What annoyed me most is that I have to rehash this every single time I get them on the phone.  It's not like we never are in the pediatrician's office.  Like a lot of special needs kids, we're in there often.  So, I explained what Jack would eat and drink, and asked her to help me within those parameters.

"Well, you need to get him to drink Pedialyte, and eat rice and pasta.  If he's hungry and thirsty, he'll eat it."

No, he won't, and nothing pisses me off more than people who are uneducated on sensory processing and feeding issues.  She was clearly going to be less than helpful.  So, I asked, when should I worry about dehydration?

"You shouldn't.  His amount of diarrhea probably isn't that much.  Up to 10 a day is normal."

I informed her that I knew EXACTLY how much my son was going because he's still in diapers (hence my complaints about diaper rash), and that 10 a day seemed excessive.  Nothing from her, except instructions to "feed rice, pasta, and push Pedialyte" and "call back when he's at 10 and we'll see if you need to go to the ER".

So, if I wanted to help my kid, I was on my own.  No one tells an autism mama to wait for things to get worse.  I went out an bought an arsenal of products to try.  I bought "no flavor" Pedialyte.  I stocked up on diapers, wipes, and an array of diaper rash-fighting creams.  I bought yogurt that my son won't eat and probiotics he won't take, all in the name of not passively standing by and watching.

What did this experience teach me?  Well, perhaps it's time to find a new pediatrician.  Really what we need - what so many of us special needs families need - is a pediatrician who handles the everyday illnesses like ear infections, stomach bugs, and immunizations, but who has special knowledge about children with developmental disabilities.  Perhaps someone who works closely with a developmental pediatrician...hint-hint, Dr. DP...expand your practice and hire a general pediatrician to work with you so we can get the awesomeness that is your practice when my kid runs a fever, too!  One can dare to dream, but wouldn't it be wonderful if we could find pediatricians that truly understand our kids' unique needs?

It's but a dream, I fear.

My friends, keep my boy in your good thoughts and prayers.  He's exhausted, having basically passed out from fatigue as we were putting him in his crib tonight.  His body is struggling with medications that it cannot process and doctors who don't understand.  As his mama, I am fighting as much as I can, but I'm only human (a tired one, at that).  It all snowballed into a week of fatigue for us all, and I'm ready for the sun to come out and melt that burden away, at least for a little while.

I'm just a mama who wants her baby to feel better.