Wednesday, July 27, 2011

Wheel of Fortune and Echolalia

Echolalia has, within the past couple of weeks, become a prominent, and welcome indeed, part of our household experience.  Why welcome, you ask?  Well, for a kid who was saying nothing 4 months ago, I'm thrilled that he's saying anything.  Echolalia...bring it.  His voice is so friggin' cute and I've waited so long to hear it that I don't care what he's repeating.

Like learning about fine wines from sommeliers, I'm learning, through Jack's therapists, the various flavors of echolalia.  There's immediate echolalia, where he repeats something immediately after it's said.  There's also delayed echolalia, where he repeats things he's heard some time after the fact.  Jack indulges us with both.

Dr. DP says that he doesn't understand what he's saying; it's still essentially a foreign language to him, but he hears it and can reproduce what he's heard.  That's a good thing.

This has led to some interesting echolalic utterances from Jack.  It started with parroting single words, "Cheerios", "shoe", and "sock".  We then moved on to short phrases.  He now says, and repeats, "See Mom...Hi Jack" at therapy.  At home, we also get "Hi Jack", as well as "ashes, ashes".  We've had to monitor more of what we say  Now, we've moved on.  Jack's repeating things he hears on TV.

This is where the echolalia really comes in.  Jack's one true love is Thomas the Tank Engine, but he also enjoys a nice episode of Wheel of Fortune and Jeopardy! every now and again.  When watching Wheel of Fortune, Jack will repeat every letter called out.  "E!"  "T!"  "G!"  He doesn't say "B" (he doesn't have the bilabial lip closure necessary for Bs, according to his SLP) or "L", and likely some other letters, but how often do you hear someone guess "V"?

Some of you may recall that the only area that Jack tests close to age-level on is letter comprehension.  In fact, he tests about a month above age level on it.  How's that for splinter skills?  So, it's no wonder that Jack is attracted to the mysteries of the wheel.

The cutest part?  When he says the names of the game shows during their opening jingles.  Wheel of Fortune becomes "Eel uh utoon" and Jeopardy! sounds like "Ish iz Jededee" (Jededee tends to get a little slurred).

Still can't get him to repeat our names, though.  After ST, Jack will come out to see me in the waiting room and exclaim "Hi Jack!" to which his SLP tries to correct him with "Hi Mom!"  No dice.  He still sounds like he's greeting himself.  We've gotten a "Mom" a couple of times, but not with any consistency.

Everyone seems to agree that echolalia, while not a behavior that we'd like to stick around long-term, is ultimately a positive sign for Jack.  He can produce speech.  He may not know what he's saying, or what we're saying, but he can hear sounds, process them, and spit them back out at us.  The long-term goal is to turn the echolalic speech into purposeful communication.

Until then, we need to watch what we say and make sure that Jack never watches an episode of Jerry Springer or Jersey Shore.

Tuesday, July 26, 2011

Illness and the Special Needs Mom

There's no better way to put it - being sick sucks.

Being sick really sucks during a week like this one:

A) We have Jack's endoscopy/pH study scheduled for Thursday.  Thank God he doesn't have to go to pre-op, because I think I'd lose my cookies.
B) We're cramming a week's worth of therapy into 2 days because of the endoscopy.  Can you say scheduling failure?
C) My Dad and stepmom are coming to town this week.  They wanted to be there to support Jack.  I'm glad to have them, but it's adding a new dimension to the week.
D) We're still dealing with the rodent problem, so I likely will have a pest control guy out to the house in the next couple of days.

and finally...

E) This past Sunday night, my scratchy throat turned into a sore throat, which evolved into a low-grade fever, which melded into a general feeling of having been smacked over the head with baseball bat.

Being a mom is just plain incompatible with illness.  As I've said before, I intend to be invincible.  Any mom can tell you that her job doesn't end when the temperature on her thermometer rises.  Nope...we pop some pain killers/fever reducers/decongestants/vodka and move forward, albeit reluctantly.  Our bodies say "no", but our kids say "now"!

For special needs moms, it doesn't end there.  Nope, the therapy show must go on.  Our kids have to get trucked around to therapy, school, doctor's appointments, the hospital, and all the while we have to try not to give off the impression of illness.  Why?  Because everyone will come down on you and say you have to rest.

Of course I have to rest!  I'm sick!  However, if I rest, who will do everything else?  Who will chauffeur the kiddos to therapy?  Who will arrange the aquatic OT evaluations?  Who will do Floortime?  Who will control the stimming?

Okay, Jack may just get to stim this week, as long as it's not the self-injurious scratching he's been doing.  Maybe no one will control the stimming.

It's a valid point, though.  When my immune system breaks down, it becomes abundantly clear to me how much of Jack's care falls on my shoulders.  Maybe I need to do something about that.  Maybe I need to transfer my knowledge to others so that they can take over when my body is ravaged with Ebola or some form of plague.

I'll get through the week in one piece.  I'll flood my system with 1000 times the RDA of vitamin C.  I'll pass out in a medicated stupor nap during Jack's naptime.  I'll scrounge for soup.  

Hopefully, I won't take everyone down with me.  I promise, I cover my mouth when I cough.  On the other hand, any suggestions for homeopathic remedies (minus Ocean - I'm already on that) that work on general cold-like symptoms would be much appreciated.

Monday, July 25, 2011

A Night Out Part Deux...Moms Edition

As posted by me on Twitter Thursday afternoon:
Going to the  support group tonight. Feel like hurling. I can do this...I can do this...
I get Jack sometimes.  Really, I do.  I feel uncomfortable talking to people, let alone talking to new people.  However, I knew I had to do this.  Jack's ABA therapist had been bugging me about it.  Friends and random people alike had mentioned it.  Dr. DP's office recommended it.  It was time.

I needed to join an autism support group.

I'd call autism parenting "extreme parenting", to say the least.  It's a lifestyle that no one understands.  On top of that, when you start to tell friends that your child has autism, some stick by you, but others stop calling.  I hypothesize that it's too much "reality" for them.

Any special needs parent needs support.  We need the support of people who've been there.  People who've paved the way through their advocacy for their own children.  We desperately need to know we're not alone.

I'm lucky enough that I know one other special needs mom.  Not many other people can say that.  I know that this is my community now.  These are the families who understand my son and understand his needs.  No explanation needed.  I needed to expand my friendship circle.

I gathered my strength, swallowed the lump in my throat, and set out for girls' night with the moms from our local autism support group.  I needed to do this for me, no matter how much my inherent anxiety resisted it.  Talking online is one thing, but meeting people face-to-face is so much harder.  Maybe I need to ask Jack's ABA therapist to work with me on my social issues?

But I did it.

I did it, people!  I went and talked and was about as social as I can be!  I learned from moms who have been there.  I felt a sense of community.  I felt like I belonged.  Among moms who have been parenting their kids on the spectrum for years, I knew that our journey - mine, Brian's, and Jack's - was just beginning.

I was so proud of myself.  Hopefully, making connections like this will give me more support along this journey.  If nothing else, I know I faced a fear and was rewarded by getting to meet new people.  I'll continue to be active in the autism community, both for myself and Jack.  That's a good thing.

Friday, July 22, 2011

Walk This Way

Jack does not like to walk on his own in places other than at home, therapy, or other select, well-known locations.

Call it arthritis, call it aging, or call it carrying-a-26-lb-toddler-everywhere, but my hands, arms, and back are killing me these days.  So, Jack's ABA therapist is helping us with a new program - teaching Jack to walk on his own.

Here's the deal.  I'll try to put Jack down.  He'll cling on for dear life.  He'll scream and flail.  He has even resorted to banging his head against the ground, which results in an obvious need to pick him up to prevent self-injury.

This program is going to be the end of me.  It goes against everything my instincts tell me about being a parent.  First, I have to get uncomfortably far away from Jack (which, in reality, is only about 10 ft.) in order to entice him to walk toward me.  Second, if he flings himself on the ground, I'm to let him do it.  Third, I'm not to look at him when he's tantruming, because that will only reinforce what he's doing.  Now, for a kid whose social interaction skills are pretty limited, I get the feeling that he really doesn't care if I'm looking at him or not, but something about being a mom tells you to keep your eyes on your kid at all times.  Period.

Luckily for me, the ABA therapist is there forcing me to go against my very instincts.  So far, we've had limited success!  Jack can now walk from the playground to the car.  However, when I say "walk", it still involves flinging himself down to the ground every 10 ft., resulting in all sorts of scraped knees, plus screaming the entire way.  The whole process takes a good 30 minutes, give or take.

Boy, do we attract stares, too.  Older people stop and say things like "Don't give in; he's just stubborn."  Well, yes, but for different reasons than other children.  It still hurts to hear people criticize him.  Unlike other kids, he just can't help his behavior.

Younger people look at us in disgust.  It's as though I'm beating my kid in front of them.  We get the "how-dare-you-not-pick-up-your-screaming-baby" stares.  This is where having the therapist is most helpful.  There's something about a woman holding a clipboard while observing the situation that makes most people keep their mouths shut.

I'm looking forward to the day that we can go to and from the playground - or anywhere, for that matter - with a little less drama.  For now, I'll be happy if he stops flinging himself to the ground.  I think it'll be longer before we lose the screaming.

Editor's Note:  I just have to add that Jack walked all the way from the car to the playground and back today while holding my hand!  It was one of those Holy-Cow-I-am-walking-with-my-kid-like-a-typical-parent kind of moments!  Progress comes in baby steps, but it's totally worth it!

Photo Source: Prevention

Thursday, July 21, 2011

Acceptance vs. Cure

You may not believe it, but those of us in the autism community bicker amongst ourselves.  You'd think we wouldn't, right?  We're on the same team.  Our kids have the same problems.  You don't hear parents of cancer patients, Cystic Fibrosis patients, or other special needs kids arguing amongst themselves, so why would we?

Well, we do.  A lot.

I think it's the nature of the beast.  Our kids' conditions are still poorly understood by the medical community.  We know it's a neurological condition.  We know certain types of symptoms, if not the symptoms themselves, are shared by all kids on the spectrum, to a degree.  However, we don't know what causes it.  Our kids all have different symptomatic profiles.  There is no one way to treat autism that works for all kids on the spectrum.

The main debate within the autism community, if I may simplify it, comes down to a matter of acceptance vs. cure.  There are those, like myself, who feel that there is no cure for our kids.  Short of giving our kids a new brain, we believe that therapy has the potential to eliminate most, if not all, of the overt autistic traits that make it difficult for our children to function in society and live independently.  However, we believe that our kids will always be autistic.  Most autistic adults share this view as well.  They claim to still experience the world differently, even if they can basically function seamlessly in society.

There are others who chase cures.  They try many different therapies to completely get rid of their child's autism.  There are many dubious providers who prey on these individuals who are desperate to provide a normal life for their children.

Now, I don't blame people for looking for a cure.  No one wants to think that their child has an incurable disability that will affect them everyday for the rest of their life.  My background in biology leads me to believe that if my child's brain has developed abnormally, which the evidence seems to indicate, then there is no cure, short of a new brain, for that abnormality.  You can't take a drug to correct abnormal growth of the brain.

I don't engage in this kind of fighting, but I see it on message boards.  In blogs.  From other parents.  It's everywhere.

But does it matter?

In my opinion, no.  If you need to believe in a cure to keep you going, and I need to just accept my son's condition, both are okay.  Your kid may benefit from biomedical treatments.  Mine may do better with a traditional therapy-based approach.  Both are okay as long as we're doing what's in our kids' best interest.

Really, I think there needs to be less bickering all-in-all.  We're on the same side.  We're all fighting for what's best for our kids.  In the end, isn't that all that matters?

Wednesday, July 20, 2011

One Surgery...Two Dates?

I have the patience of Jack.

Jack's endoscopy/pH study is coming up.  I have been given two different dates for the procedure - July 28th and August 11th.  Obviously, only one of those can be correct.  If the 28th is correct, I need to reschedule our ABA therapist, who we see this coming Friday, so I need to know before Friday morning.

So, I call Dr. GI's office and leave a message for the procedures scheduling contact.  I tell her that two different people have given me two different dates.  Seeing as one is a mere week away, confirmation of one or the other would be swell.

I get nothing.  No return call...nada.

Brian and I commented tonight that we really like Jack's medical/therapeutic team, but front office people can be a pain in the ass.  Forgive me if this is your profession, because I'm well aware that not all front office people are like this.  Dr. DP's office manager is friggin' awesome.  The woman deserves an award for putting up with me.

I have run into my share of crappy medical office staff.  There were the triage nurses at our regular pediatrician's office that claimed that Jack was "lazy" for not self-feeding.  They also said that they don't even look at speech issues until the age of two, regardless of if my kid's regressing or not.  We'll only use our regular pediatrician for well-child checks and ear infections from here forward.

Now, either date works for us.  I guess it would be good to get it over with, so I don't spend the next 3 weeks worrying about it, but if it's a week from now I'd really like to know.

I worry sometimes that I come across as a bitch to these people.  Maybe I do, but this is my son's health and development on the line.  Anyone I speak to at a doctor's office isn't as emotionally invested in my son as I am.  I know that they always try to tell you that they are, but they aren't.  They can't be.  No one cares as much about your child as you do.  That's why it's critical that you advocate as much as you can for your child.

I'll call again tomorrow morning.  If that doesn't work, I'll call again in the afternoon.  If that doesn't work, I'll have Brian call.  He's got the "I-work-in-the-legal-profession-and-mean-business" voice that just manages to get things done when I can't.  Unfortunately, when it comes to getting what our kids need, sometimes it's only the squeaky wheel who gets the grease.

Tuesday, July 19, 2011

Glad That's Done

Ask the parent of any special needs kid and we'll likely say that nothing brings on more anxiety than an impending specialist appointment.

We're so used to hearing negative things.  It's these very offices in which we heard that our child had special needs in the first place.  Needless to say, it's not a place where I'd choose to hang out, given the option.

Today was one of those appointments.  We had a 3 month post-diagnosis follow-up with Jack's developmental pediatrician, whom I'll call "Dr. DP".  Dr. DP's office is in a older home in a residential area near our local children's hospital (the one we seem to frequent these days).  While I didn't feel as much anxiety as I did last time (I kept willing myself not to vomit at that appointment), I was still nervous.

After all, it was at this office that I first learned that Jack was autistic.  Not pleasant memories.

That being said, we truly have the best DP out there.  Seriously.  His staff is dedicated to helping children with developmental disabilities and they are committed to that goal.  The front-desk lady is wonderful at handling any requests you have and helps out tremendously with securing insurance coverage for visits; not an easy task, considering that many insurers tend to deny coverage for things like autism, which they consider "life-long, incurable, and educational conditions".

There is also a social worker (we'll call her Ms. SW) who is fantastic at helping you navigate the maze of social services, therapies, and Medicaid waivers.  She also is a sounding board for any concerns you might have.  She even came out and did a Floortime tutorial with us at NO CHARGE.  She's awesome.

Then there's Dr. DP himself.  He's foreign-born and raised, so he speaks with a pleasant accent and is the epitome of calmness in the face of kids who can be anything but calm.  You can tell that he really loves what he does and that helping some of society's most vulnerable and precious children gives him great joy.  He takes the time, a lot of time in fact, to listen to your concerns and address them.

None of this negates the fact that every time I step through the front door, I feel like hurling.  Or bolting. Or crying.

The visit went well.  Our concerns over Jack's aggression and sleep disturbances were listened to.  We got advice and offers of assistance in completing paperwork for Jack's Medicaid waiver.  Overall, Dr. DP was pleased with Jack's progress.  He feels we are on the right track with therapy, but he wants to add aquatic therapy to the regimen to augment the sensory integration work done in OT.  It's a gentle therapy that is supposed to help regulate Jack well and (hopefully) have the added benefit of helping him sleep better (yay!).  So, once we get past Jack's upcoming surgery, we'll start evaluations for aquatic therapy.

Jack passed cars, buses, and trucks back and forth in front of his face almost the whole time, but he was not screaming until it was time for the physical exam.  However, with Jack, that's to be expected.

We left with our recommendations and an appointment for another follow-up in 6 months.  As happened last time, I also left with a strange sense of peace.  You may ask how I felt peaceful 3 months ago after hearing that my son was on the autism spectrum, but I did.  I guess I knew that he was going to get the help he so desperately needed.  The only way for his life, and ours, to get better was with help, and we were finally getting it.

I guess I felt the same way today.  My son is still autistic, and these appointments are a painful reminder at times of that fact, but I can take comfort in knowing that there is a whole team of specialists, social workers, therapists, and family and friends who care very much about helping him progress.  It's these people who accept that autism is just a part of his life, and that's okay.  They see him as wonderfully unique and a special child with special needs, but who still has limitless potential.  He's autistic, but it's okay.

It is okay.

One appointment down.  Next up on the agenda...Jack's GI surgery/procedures.

Monday, July 18, 2011

A Night Out

Brian and I have had a rough couple of weeks.

Last Thursday night, I took the advice of Jack's therapists and enlisted the help of my in-laws so that Brian and I could go out to dinner.  We decided to go to a place that we haven't been to in a few years, an all-you-can-eat stir fry bar.  We headed out with dreams of peanut sauce-laced, vegetable-loaded, noodle creations dancing in our heads.

I was psyched.  A bowl full of stir fry goodness with a perfectly-crafted mojito was exactly what I needed after what has been two of the toughest weeks we've had with Jack since he was born.

We got to the restaurant and were mildly amused.  Seeing as it was the opening night of Harry Potter and the Deathly Hallows Part 2, there were all sorts of characters out in force.  Now, I'm as big of a fan of "the boy who lived" as the next person, but you're not catching me in my finest Gryffindor garb.

At our table, I ordered my much-anticipated mojito (and got carded...yay!).  At the bar, I loaded my bowl to the brim with broccoli, baby corn, noodles, chicken, and luscious peanut sauce.  I put my Popsicle stick with my name (and an obligatory smiley face and "thank you") written on the side and went back to the table to enjoy my drink.

About that time, I looked to my left and saw a family sit down.  It was a couple with a little boy Jack's age.  Maybe younger.  He looked about Jack's size.  He was talking, interacting, and having a blast at the restaurant.  All things that Jack wouldn't be able to do.  

The restaurant would be too overwhelming for him.  He wouldn't be able to sit still.  He'd be screaming. He'd need to pace back and forth.  He'd be miserable and looking for a window out of which he could stare.  

I tried not to look at them.  This was supposed to be a date, damnit!  Instead, my eyes kept lingering with envy over to their table.  I watched as the little boy speared a piece of food off of his plate.  He put it in his mouth and ate with gusto.  Jack can't use utensils.  He eats purees.  He wouldn't eat at all at the restaurant.

I ate my meal and drank my mojito.  I made attempts at chit-chat with Brian.  I was glad to have a night out.

Then, a waiter brought a hot fudge sundae to the little boy.  His parents smiled at him.  His face lit up at the sight of a sundae the size of his head.  Brian got up to get another bowl of stir fry.  I sat at the table, nursing my mojito, and something inside my heart really started to hurt.

Jack doesn't eat ice cream.  His face wouldn't light up at the sight of the sundae.  I don't know if he'd know what it was.  How I wished that family was mine.  That it was Jack smiling as he tore into his ice cream.  That it was Jack having a blast on a night out with his family.  That it was Jack having a conversation with us over dinner.

I felt a tear at the side of my eye.

There will be a time when I can go out and not look at the other families with envy.  My little boy is amazing.  I wouldn't trade him for anything.  So, why do I feel like this?

I have to believe it'll get easier.

Friday, July 15, 2011

Risks and Benefits

As you may know, Jack's trial on Prevacid was a horrid disaster.  I called Dr. GI's office several times over the past week, because we were desperate.  Jack was vomiting more, showing behavioral changes, and not sleeping well.  My arms are literally covered with bruises from taking the brunt of Jack's aggression.

Something had to give.

Luckily, all of the nurses I spoke to (because you can never actually get an MD on the phone when you call) agreed on one thing...take Jack off of the Prevacid.  It certainly wasn't helping, so there was no point to continue with it.  However, that is where the agreement stopped.  One nurse was telling me that they were still considering a diagnosis that Dr. GI told me he suspected in the beginning - eosinophilic esophagitis.  The next day, another nurse told me that Dr. GI was sure it was probably just sensory issues related to Jack's autism.

All we knew is that Jack was miserable, Brian and I were miserable, and Jack has been suffering from feeding difficulties and persistent vomiting his entire life.  His therapists certainly agree that a good portion of Jack's feeding issues are sensory related, but certain things make them believe that there is a component to Jack's vomiting that has a medical cause.

I think that the tendency with kids on the spectrum, especially ones like Jack who can't let you know what's going on verbally or non-verbally, is to blame everything on the fact that they're autistic.  Brian and I decided that, in the end, we did not want to throw our hands up in the air and say "It's autism-related" when there were valid possibilities still out there.  We didn't want to miss something that, with the appropriate treatment, could improve Jack's quality of life.

So, in we went to see Dr. GI on Wednesday.  Luckily, he agreed with us.  Unfortunately, the next steps aren't easy.

We're entering the realm of invasive testing.  Jack will be going to the hospital to have an endoscopy and a pH probe placed for a pH study.  They also have to rerun his bloodwork, because Dr. GI believes that it may have sat around the lab too long and possibly skewed the results.  He'll have to be placed under general anesthesia for both procedures.

We had the option of two different pH probes for Jack's study.  One was a wired probe, in which a wire would attach to the probe, through Jack's nose, and would be connected to a monitor.  The obvious problem with this is that Jack could pull the probe out, a possibility made all the more likely because Jack is so sensitive to anything touching his face.  His arms would have to be put in braces to keep him from messing with it.  What's so bad about that, you might say?  Well, the study goes on for a day or two.  That's a long time to keep Jack restrained.  He needs to move.  It would drive him crazy.

The other option was a wireless probe.  The probe would be attached to the wall of Jack's esophagus and  it would transmit data to a pager-like device that Jack would wear.  After a few days, the probe would detach and pass out of his body in the "natural" route, if you know what I mean.  Sounds like a no-brainer, right?

Wrong.  The wireless probe isn't placed in children Jack's size.  The risks of using this probe vs. the wired one are increased in a child Jack's size.  Dr. GI was candid with us - he's never placed one in a child Jack's size - but a colleague of his has and he feels confident that he can as well.  Given Jack's autism, he feels it's the best option.  After all, it does no good to place the probe at all if Jack pulls it out.

So, we're faced with weighing the risks of one procedure vs. the benefit of not torturing him with another.  After some consideration, we decided to go the wireless route.  I pray that we made the right call.

We still don't know when Jack's procedure will be (I'm waiting for the scheduling people to call), but it'll be soon.  Hopefully, we actually get some answers with this round of testing.

How do weigh the risks and benefits of something like this?  How do you know, especially with a child who cannot speak for themselves, what to do?

Thursday, July 14, 2011

Take Your Screaming Kid Elsewhere

Before reading my post, I urge you to click here to read an article about one Pennsylvania restaurant's decision to ban children under the age of 6.  I also urge you to just read a couple of the comments about this article.

Done?

Okay, here's the problem I have with this policy.  The owner of the restaurant, as quoted in the article, states that the reason for the sans little ones policy is "their endless screams at public dinner tables are 'the height of being impolite and selfish'".  The article also states that another restaurant in North Carolina has posted a policy of zero tolerance against screaming children.

The comments were more disturbing.  People were accusing the parents of screaming children for not teaching them good manners.  Others suggested that if your children couldn't behave that you should just stay home.

It burns me when ignorant people say things like this.

Certainly, there are kids who are being bratty.  However, there are also plenty of kids, like Jack, who have special needs.  Jack is horrid about acceptable restaurant behavior.  Look at it from Jack's perspective, though.  He enters a restaurant and is bombarded with new sights and smells.  He has to sit in an unfamiliar chair (which he normally refuses to do at restaurants, so he just doesn't sit).  Feeding is stressful for him, so seeing food stresses him out.  He can't modulate the sounds he hears, so he picks up every one: the clanging of the silverware, the people talking at the tables around him, the sounds from the kitchen, the fans above...you name it.  It sounds like a rock concert to him.

You might freak out, too.  He's not being bratty, nor should I be made to feel "impolite" or "selfish" for wanting to go out with my family for a meal, just like typical families do.

Now, does that mean that my family should never be allowed to attempt to enjoy a meal out as a family? Jack doesn't mean to behave poorly; he literally can't help it.  If I could teach him to behave in a socially acceptable way, don't you think I would?

If any of you (and you're all good people, so I know you don't!) ever feel like saying something to a family with a screaming child in public, I'd urge you to think twice about it.  That child may have special needs.  There may be a biological reason for that child's behavior and your stares and comments will make that poor parent feel even worse about the situation and their lot in life.  I guarantee, your stares and comments will send that poor mother home crying (even if she doesn't do it right then, she will later...I've been there) and she won't try to take her child out for a while.  She'll stay home, fearful of the world's reaction to her baby, and it's a horribly lonely place to be.

Then, when a person rolls their eyes, or stares, or worse, actually says something to you, it makes you feel even worse.  I don't want to leave my child home whenever I want to eat out.  Occasionally, I want to have the right to try to enjoy a meal with him.

Luckily, these restaurants are few and far between.  Out of curiosity, do you think "no kid" or "no screaming kid" policies are right/wrong/discriminatory?  Why or why not?  (Please don't worry about offending me, either.  This blog is about educating people, and if you have a different perspective from mine, that's fine.  I might share with you insights from my life as to why I feel differently.)

Wednesday, July 13, 2011

In Case You Missed It...The 2011 All-Star Game

Editor's Note:  I am aware that this is not about Jack's GI appointment...but I need time to craft a thoughtful post on the visit.  Sorry...

For those of you who missed it, here is a brief synopsis of what happened during Tuesday night's MLB All-Star Game.  Now, for those of you who know me well, you know I am a very, very big baseball fan.  However, I do not appreciate the way that FOX commercializes the entire broadcast.  So, here's the Reinventing Mommy take on the 2011 Midsummer Classic.  I hope I captured some of the lesser known highlights:

Innings 1 - 3

Jordin Sparks sings the National Anthem.  Does she have a career anymore?  Other than that, nothing happened.  Tons of fun.  I popped some popcorn; that was the highlight.

Top of the 4th

Adrian Gonzalez takes Cliff Lee (damn Phillies) deep for a 1 - 0 lead for the AL.  For those of us rooting for the NL, the yearly let-down begins to set in.

Bottom of the 4th

Prince Fielder makes up for his idiot play earlier, in which he drops a fly ball, by hitting a 3-run homer off of C.J. Wilson to take the lead for the NL.  Two years in a row?  Dare we dream?  It's a good thing he hit a home run, because there's no way he'd be running the bases without getting significantly winded.

FOX turned its cameras away from the game in order to get a brief interview with Justin Timberlake, in which he gave his take on beer's standing as the best ball game food.  Way to get a plug in for his new movie Friends with Benefits (which looks exactly like Natalie Portman and Ashton Kutcher's movie No Strings Attached).

Top of the 5th

David Ortiz's kid imitates some AL greats' batting stances and nearly renders himself unconscious by wielding a regulation-size baseball bat over his head.

Bottom of the 5th

Synchronized swimmers perform in the pool that is randomly placed in the stands in right in Chase Field.  Maybe MLB is considering expanding?

My husband briefly lectures me about the importance of a good secondary lead.  As though I'll ever need to be able to execute a good secondary lead.  By the way, the base-running in this game sucks so far.

Andre Ethier nearly nails a cameraman at the left field foul pole.  Andre...there are no bonus points for hitting people.

Weeks scores on an Ethier hit to bring the game to 4 - 1 NL, but crappy base-running prevails again and Ethier gets tagged for out #3.

Top of the 6th

Mason starts panting, which drives me up the wall.  I can't stand it and I'm having trouble concentrating. I'm also thinking of going to sleep, because Jack cried for about 2 hours today.

And...here comes Jurrjens!  He retires the side with no problems.  Cliff Lee couldn't manage that (damn Phillies).

Bottom of the 6th

Heath Bell surprises a random kid in the stands with a Yoda backpack full of goodies.  Being that he's Heath Bell and not Derek Jeter, the kid has a look on his face that says, "Who the hell is Heath Bell?"  Priceless.

Top of the 7th

Jurrjens is back out for another inning.  Kimbrel's warming up...these Braves boys sure can pitch!  Kimbrel comes in and Venters is warming up in the pen.  Kimbrel records out #3.

Some female singer whom I've never heard of is singing "God Bless America".  I feel really out of touch with anything in the entertainment industry.  That's probably a good thing.  Of course, I also grew up listening to Gloria Estefan and Elton John, so my ideas of pop culture are probably a bit dated.

Bottom of the 7th

I find some irony in the fact that there is a MLB pitcher with the last name of "League".  Seems fitting.  I note that he sports a bro-hawk similar to Freddie Freeman's "squirrel-hawk".  If it looks like you have an animal trapped under your cap, the bro-hawk's not for you.

Kung-Fu Panda Pablo Sandoval hits a ground-rule double to score Hunter Pence.  NL leads 5 - 1.  Is it too early to say "Home Field Advantage"?

Top of the 8th

Watching the AT&T commercial about flash mobs has only convinced me that flash mobs have never been and will never be cool.  They will always generate WTF-esque reactions from viewers.

Venters is lights-out.  Heath Bell comes in to pitch and slides into the pitcher's mound.  Interesting entrance.


Bottom of the 8th

Heath Bell is interviewed regarding his slide.  He's gotten more face-time in this game than anyone.

I ask Brian to put the laundry from the washer into the dryer while he's up.  It's a riveting inning so far.

The home plate umpire looks confused looking at his line-up cards.  I can see why it would be hell during the All-Star Game.

A beach ball landed on the warning track.

Top of the 9th

Brian Wilson is warming up.  Prepare to be stunned by the laser beams that blast forth from his impressive beard.  It helps when your manager is the NL manager this year, too.

Nice throwing error for Starling Castro.  Defense hasn't been the NL's strong suit tonight.  Another comedy of errors, and there's a pitching change to bring in Wilson.  Surprise, surprise, the Pirate couldn't make the final outs.

I'm afraid small children or animals might inadvertently get trapped inside the entity that is Wilson's beard.

Ball game.  NL wins 5 - 1.  Home field advantage is ours.

Tuesday, July 12, 2011

The Bucket

I swear, I've never seen a human being so small throw up so much.  This is coming from me, the woman who had severe morning sickness for the first 16 weeks of her pregnancy.  With Jack, I was calling the porcelain gods upwards of 12 times a day.  The people at my old office really appreciated that, I'm sure.  I remember one of my co-workers commenting to me, before I let it out that I was preggers, that people were talking about someone throwing up in the bathroom throughout the day.  Oops...

Well, Jack's medicine was supposed to have curbed this by now.  Instead, 3 weeks later, it's continuing to escalate.  We hit a high of 6 times on Thursday and have averaged about 4 times daily since.

Nope, he's not sick.  We've checked.  No fever.  He only throws up during meals/snacks, which also seems indicative of a problem with the eating process and not with an actual illness.

So, mealtimes now involve the presence of the "Bucket", which Jack calls a "hat" because Brian put it on his head over the weekend.  It's all we can do, though.  It's no longer a question of "if" Jack will throw up.  It's a question of "when".

Monday at OT, Jack screamed almost the entire time.  His OT reported that he was stimming a lot and having extreme difficulties (more than usual) with transitions.  I mentioned that he's been really disengaged and she suggested that we focus on keeping him regulated and abandon working on engagement for a few days.  Bummer.

Today at speech, Jack did better, but she took it nice and easy with him.  I still heard more crying than normal and he did vomit once.  He was stimming a lot again and doing some scripting/parroting.  Considering the lack of all-out screaming, it was an improvement over the previous day.

I finally heard back from Dr. GI's office on Monday.  The nurse said that he's still leaning towards this all being a sensory issue.  That's really frustrating for me, in a way.  First, I think the tendency is to blame all problems with autistic children on their autism.  I want to make sure that we're not missing something that can be treated.  Second, I really wish that there could be something in my little boy's life that was easily treated.  I want him to have some relief.

It's making him miserable, which in turn is making me miserable.

So, we're meeting with Dr. GI on Wednesday to discuss scheduling an endoscopy and a 24-hour pH study.  The risk is that neither test may produce results.  In that case, we're back to where we started...sensory issues.  Sensory issues that can only be treated with more therapy.

At least I got the okay to take Jack off of the Prevacid, because I was nearing the point of requiring an intravenous banana daiquiri.  Hell, if I have the line placed, let's just make it straight rum.

In the end, I'm left with a kid who's miserable and the possibility that there's nothing that I can do about it.  I hate that.  I hate hearing that there's nothing we can do except for therapy and prayers.  It was supposed to be easier than this.

Monday, July 11, 2011

This. Is. My. Yard.

This is NOT an actual photo of Mason.  He isn't
nearly this talented of a "reliever".
It's Sunday morning.  I've already fed Jack and cleaned up after him when he subsequently threw up.  Brian's making French toast (or Freedom toast if you're so inclined).  Out on my driveway awaits the Sunday paper and with it my weekly collection of coupons.  Mason hasn't walked yet, so I put him on the leash and decide to let him walk in the front yard, instead of the back yard, for a change while I get the paper.

Before I head out, Brian reminds me not to let Mason "do his business" in the grass, because he's going to be cutting the grass later on that morning.  I smile and politely remind him that other dogs do live in our neighborhood and thus it would be wise to look before he steps anyways.  Brian responds that there are never any dogs in our front yard.

Oh...really?

As Mason and I get into the yard, I see one of the sights that never ceases to make me wonder...a 5-year old leash-walking a dog about 3/4 of her weight.  Of course, when the dog sees Mason, he breaks and drags the poor little girl down to the ground.  I quickly scoop Mason up and grab the leash of the wayward pooch as he enters our yard.  A few houses down, I see the little girl's mother heading over toward her crying little girl.  I yell over to her that I have her dog.  She helps her daughter up and, to my surprise, snatches the leash out of my hand.  No "thank you"...no nothing. 

The little girl says something about being sorry for the dog getting away, to which the mom replies, "It's not your fault" and gives me and Mason an eat-poo-and-die kind of look.  WTF?!?

Being the non-confrontational person I am, I said nothing...but let's be real.  Don't let your younger children be in control of your pet's leash!  I mean, it only makes sense.  A 40-lb. girl and a 35-lb. dog isn't a good leash-walking pair, you know what I mean?  Your dog will pull your child over at some point, which could have disastrous consequences.  Don't you agree?

Plus, Mason's allowed to walk in my front yard.  Do you want to know why?  Because...it's my freakin' yard!  Forgive me for forgetting to check with you first to make sure that our dogs' walking schedules wouldn't conflict.

This may just be a problem with the area in which we live.  We get a lot of rude comments at various places (the park, the store, etc.).  Hell, our ABA therapist tried to be friendly with someone at the park on Friday and got rebuffed.  We were working on a program with Jack to train him to walk on his own, with the usual result of screaming, flailing, and throwing himself down on the ground (FYI: the fit lasted 40 minutes, but he walked!  Next step, maybe less throwing himself down on the ground?!  I think no screaming is a ways down the road.).  Our ABA therapist comments to one lady standing near us that she thinks her little girls are too precious.  The woman rolls her eyes at Jack's therapist and turns her back to her!  The therapist looked at me and said, "I guess the people around here don't know any manners."  I told her that Jack and I were used to it.

You know what, though?  It's not okay to be a heinous b!%&#.  It's not.  Jack is my kid.  He deserves respect.  This is my yard.  I can let my dog relieve himself there if I so choose!

Maybe I shouldn't be a push-over anymore.  I'm always afraid to stand up for myself.  To say that my kid is autistic and that the stares/comments aren't appropriate.  I think I need to grow a pair.

So, I'm going to try to take a stand.  Mason can go wherever he wants.  THIS IS MY YARD.

Sunday, July 10, 2011

I Know Her!

Sorry for the lack of posts over the weekend.  This has been the week from hell.  Seriously.  I don't think we've had a week full of more throwing up, behavior issues, and regressive behaviors.  We all survived, though, and I've got a call in to Dr. GI (he was out on Friday...grrr) to talk about taking Jack off of this medicine, because it's clearly not working.

While waiting for spit-up laundry to run in the wee hours of Friday morning, I watched a movie that had been recommended to me called Temple Grandin.  It is the true story of a woman, diagnosed with autism at the age of 3, who went on to get a PhD in Animal Science and design humane livestock systems.

As I was watching this movie, I kept thinking one thought...I know her!  No, I don't know Dr. Grandin.  I know someone very much like her, though...his name is Jack...and seeing the world though his eyes and ears for an hour and a half was enlightening.

At one point in the movie, Dr. Grandin designs a "squeeze machine" to self-soothe with proprioceptive input.  It makes her feel comfortable and relaxed to be squeezed.  If you read my blog enough, you'll know someone else who loves to be squeezed and finds comfort in that pressure.  Yes, it's Jack.

She also loves staring at moving objects.  She studies them, almost like she's trying to figure them out.  Jack will spend tons of time watching the movement of the wheels on his trains, the way a coffee can or laundry basket will spin on the floor, or the motion of a door opening and closing, opening and closing.  Jack has always done this.  Even when he was an infant, we used to comment on how he would study the motion of objects.  We didn't know at the time that it wasn't normal for a baby to spin cups and laundry baskets for long periods of time without end.  We all thought he was just analytical, gifted even;  I said he was going to be an engineer one day.

Hypersensitivity to sensory stimuli is another thing that Dr. Grandin experiences a lot in her movie.  Background noise gets her attention, but human voices calling her name does not.  Same with Jack.  He'll hear the slight sound of a horn on TV and start crying.  However, I call his name 20 times and, I kid you not, he doesn't look.

All of these traits gave Dr. Grandin one thing:  a career!  Her heightened sensitivities and visual-spatial processing gave her unique insights that allowed her to turn her "disabilities" into a career in designing livestock systems that nearly 1/2 of our nation's livestock pass through.  All of this from a woman who only started talking at age 4.

If Dr. Grandin was diagnosed as a child now, she would certainly have been diagnosed with "classic" autism, but look at what she did with her life!  In a time when "refrigerator mothers" were still considered the cause of autism and there were no supports in place for individuals with disabilities (the Americans with Disabilities Act wouldn't come around until the early 90s), she transcended those barriers and became an inspiration to us all.

And she embraces her autism.  It's a part of who she is!

It gave me a bit of hope.  I don't feel like Jack will ever be "cured"; he has a neurological condition and a "cure" is probably not possible.  However, if Dr. Grandin can get a PhD, I have to believe that with intensive intervention and therapy now, Jack can learn to live with his autism and will be able to channel the gifts he has into a life that is fulfilling and meaningful to him.  As author and autistic self-advocate John Elder Robison said, "I went from being a disabled child to a gifted adult with really the same package of traits...We are absolutely, positively still autistic.  But we are no longer disabled by it."

Friday, July 8, 2011

No Miracle GI Cure (Yet)

Jack's been on his Prevacid for just shy of 3 weeks.  We've been waiting for improvement.  We've been waiting for the answer to Jack's vomiting.  We've been waiting for a miracle.

We haven't gotten it.

Rather, we've gotten the opposite.  Jack's continuing to throw up.  He's thrown up a couple of times a day this past week.  He's thrown up 5 times today alone.

It's difficult to watch Jack struggle so much with feeding.  I love eating.  I want him to enjoy it, too.  It's hard to watch him eating and then, without warning, it all comes up.  If it happens enough, he doesn't want to eat.

Jack's always had a difficult time going to sleep at night; it usually takes him upwards of an hour.  This past week it's taken him an hour and a half.  In addition, during naptime he's waking up every 15 minutes screaming.  He's waking often during the night, too.  It's not disturbing us necessarily, because Jack neither needs, nor wants, assistance going to sleep.  He'd rather be alone.  However, I hear him and his restless sleep and I know that he's not getting the quality sleep that he needs.  Now, I know that sleep disturbances are common among autistic individuals, but Jack's have escalated.

The scariest thing is that he's shown a bit of regression over the past few days.  Today at OT, Jack wouldn't sign for his therapist.  Big deal, you might say, but what Jack didn't sign was "more", to indicate that he wanted "more" of the therapy swing, one of his absolute favorite things.  That's scary to me.  He's been more difficult to engage and has been stimming more.

Since he can't describe what's happening to him using the few words he can use spontaneously (hat, Cheerios, and "uh oh"), we have no idea what he's feeling or experiencing.  From what I see, he's uncomfortable.

Today, Jack has been very irritated and fretting almost non-stop.  He's been sensory seeking deep pressure hugs more and gets very agitated if he's not constantly being squeezed.  Sensory stimuli seem to bother him more.  He's needing multiple prompts for signs.  He's not signing spontaneously, even for highly motivating rewards (like swinging and Cheerios).  He's been less aware of his surroundings.  At one point, I came and sat next to him on the couch.  He started to lean towards me, so I cautiously slipped my arm around him.  Normally, he would squirm away.  Instead, he acted like he didn't even notice my presence.  At first, this was kinda cool, because I got a few precious moments to snuggle him, which I never get to do.  However, after watching him during those moments, I saw a look in his eye like he wasn't even there.  He had checked out.

Now, I've heard of therapy and medication causing regressions and behavior problems.  I don't know for certain that is what's going on, but the addition of the medication is the only change to Jack's therapy/diet over the past few weeks.  Believe me, he eats a very limited, brand specific diet, so he hasn't had anything else introduced.

Autistic children are so influenced by so many things that don't make sense to us.  Noise, lights, vibrations, movement, even chemicals and elements of our food.  It's like their whole systems are hyper-vigilant.

I've got a call in to Dr. GI's office about it.  Here's hoping that we don't have to go into the weekend with Jack struggling so much.

Thursday, July 7, 2011

Goofy the Great and Other Things I Envy

He said take my hand.  Live while you can.  Don't you see your dreams lie right in the palm of your hand?  ~ Vanessa Carlton, "Ordinary Day"
 After a rough start to my week, I'm doing better today.

We had several play dates over the weekend with NT children.  We do this as part of Jack's behavioral therapy.  He needs to be exposed to children who are more communicative, engaging, and social than he is.  So, to fit that bill, we essentially any NT kid who is a year or so younger than Jack or older will do.

It just so happens that most of the kids we know are about a year younger.  So I schedule these play dates and brace myself.  Why?  Well, Jack does okay on play dates, so long as he can a) play by himself without being imposed upon and b) isn't overwhelmed by the additional noises and sensations of a new environment.  Also, I know that for me personally, I'll have to spend a couple of days recovering.

Why?  Because, I'm always astonished at what kids even a year younger can do that Jack has never done.  At a year younger than Jack, kids are readily engaging with adults, communicating wants and needs both verbally (by saying things like "ball?") and non-verbally (by pointing or gesturing).  They can apply their knowledge to answering questions, like "what's that?" types of questions.  They can self-feed with utensils, both spoons and forks.  They are eating basically the same types of foods that their parents do.

Jack can't do any of these things, yet.  I feel a pit in my stomach afterwards and usually drive home a bit sad, or in tears.  I know I shouldn't compare Jack to NT kids.  Jack will follow his own developmental path and it's going to be outside of the norm...but I just can't help myself.

Going into Speech on Tuesday, I was really in a downer kind of mood.  I'm sure that our SLP loved that.  Afterwards, I took Jack to Gymboree.  We come in and Jack's feeling a bit dysregulated, so I scoop him up and rock him in one of the chairs and give him a firm back rub.  He loves that kind of deep pressure.  He rests his head on my shoulder, spacing out looking out the window as he likes to do, and I know all's right in his world.

I look over and see a group of girls from his class sitting with some Disney books.  The kids in Jack's class are all his age or younger (it goes from about 22 months to 28 months...Jack's just shy of 28 months).  I've noticed that the kids in Jack's class are starting play together.  Before they were all interested in each other, but never really played interactively.  Now, they are, but Jack doesn't even notice the presence of other children in the class.  He stays to himself.

So, the girls were looking at the books, and having an elaborate (for a 2-year old) conversation about "Goofy the Great" (we don't watch Disney in our house, so someone will have to inform me as to whether or not "Goofy the Great" is from a movie or something), with complete sentences and everything.  Jack exclaims "Cheerios" if he sees them and repeats "asha asha" over and over again.

It was heartbreaking to me.  Of course, I don't think Jack feels like he's missing out; he's perfectly content in his world as it is.  In fact, he avoids other kids.  However, I wish for him that he was starting to make friends.

Later, during class, we're sitting in a circle, which was huge for Jack because normally he won't touch circle time with a 10-foot pole, singing a song about bugs and waving the parachute, which had a collection of bug finger puppets on it.  Of course, Jack doesn't like hearing singing, and he can't sing along, so I'm quietly humming along to the song behind his head trying not to disturb this amazing moment of him sitting with the group.  Then, the song gets louder and the bugs spring from the parachute.  Jack starts to fret.  Again, and Jack cries.  Again, and Jack screams unconsolably.

I turn him around and bury his screaming, tear-streaked face in my shoulder.  I rub on his back hard to get him to stop.  The other kids, who were squealing and laughing with delight at first, are now staring at Jack.  One little girl asks her Mom, "What's wrong with him?"  The Mom replies, "Nothing" and looks embarrassed that her daughter asked.  The Mom next to us, who was new to the class, asked if Jack wanted a bug puppet.  I said "No, thanks...he's just scared of the noise" and turned my attention back to Jack.  I don't know why I'm not comfortable with the truth yet.  Why can't I just say to someone, "He's autistic...he just needs understanding right now."

The rest of the time at Gymboree, he stayed in my lap, terrified.  His teacher has worked with autistic children before and mercifully made the rest of the activities a bit quieter from that point forward.  I'm ashamed to say it, but I looked around the room with envy.  Envy at the conversing children.  Envy at how they can jump.  Envy that they can enjoy these activities without sensory overload.

Once we got out to the car after class and Jack was happily munching Cheerios, I cried.  I cried on and off for the rest of that day.  I feel so embarrassed even admitting it, but I was envious of the other parents and the relationships they get to have with their children.  I was envious for Jack of the lives that their kids lead.

I know it's wrong, but I'm only human.  Maybe I'm still at the point that I need a good cry every now and then.  I know that the answer lies in abandoning the dreams I once had and discovering new ones, but it's easier said than done.

Wednesday, July 6, 2011

Say Once, Then Repeat

PSA:  These are PECS.
We've entered the realm of parroting, or repetitive speech.

Jack still is saying basically the same things he was a couple of weeks ago, where most of what he says is repeating either TV shows or something we say.  He says "hat", "uh oh", and "Cheerios" spontaneously, but that's it.  He'll also sign spontaneously...sometimes.  He can sign "more" spontaneously, but he usually needs a prompt.  He's signing "all done" spontaneously and being consistent about it, even though he sometimes gets confused as to whether "more" or "all done" is needed in a certain situation.  In the past week, we've picked up a new sign, "hat", but he only signs it with prompting.

However, some of Jack's speech is starting to sound a little like a broken record.  For the past couple of days, Jack repeats, over and over, on-and-off, all day long, "Asha, Asha" ("Ashes, Ashes" in Jack speak).  To this, we respond, "We all fall..." and Jack squeals where "Down" would go.  He keeps repeating it over and over.  I feel like I've said "we all fall..." about 100 times today.

Another PSA:  These are also PECS.  One is used as an
augmentative communication device.  The other is used
to pump you up.
Jack also repeats "Hi Jack!" to himself whenever someone enters the room.  He'll repeat it until you say, "Hi Jack!"  It makes me wonder if he understands what "Jack" means.  He still doesn't respond to his name, so I think it's possible that he doesn't know what it means.

This is most of what he says these days..."Hi Jack!" and "Asha, Asha."

I'm not sure if it's stimming, or if it's the repetitive speech that I hear that kids on the spectrum tend to do.  Now, for a kid who wasn't speaking 3 months ago, I'm so psyched that he's speaking at all.  It means that he can talk!

His ST says that Jack still doesn't get the purpose of communication.  Bummer.  She said that he's still very content in his own little world and communicating just doesn't serve any purpose to him yet.  Why communicate if you don't need to, right?  So, the goal right now is to help give him better tools to communicate and help him use those tools in a meaningful way.  We're moving on to a picture system (PECS - Picture Exchange Communication System), with the hopes that it will make it easier for Jack to spontaneously communicate.

I think that's the problem with having a special needs kid; there are so many unknowns.  You don't know if they'll talk, or when.  Once they start, you don't know if they'll ever be able to use language appropriately.

So, here we go, diving into another communication system.  As it turns out, I'm a rockstar at making picture cards (who knew?), so I'm pulling out the craft supplies and getting to work.  Hopefully, this will help Jack be able to tell us what's on his mind.

Monday, July 4, 2011

Baby, You're a Firework

Happy 4th of July weekend!

In the Reinventing Mommy household, the long weekend brings the promise of a few things.  First, there is NO THERAPY for 4 days!  Well, that's not totally accurate...we'll be doing our daily Floortime regimen, but we don't see any therapists for a few days.  Not that we mind them (usually), but it's nice to have a break.

We've spent our long weekend Daddy-less, as Brian went out-of-town to visit his brother and sister-in-law.  In the absence of his Daddy, Jack has been, well, Jack.  For the most part, he's taken the change well and has had relatively few meltdowns.

The weekend was filled with playdates (exposing Jack to NT kids is a task that NEVER ends) and Floortime (all the time, everywhere!).  I spent my last evening sans husband baking a Strawberry Cake that I hope will taste as good as it looks.

All of this for the big event.  We're talking the 4th of July.

Ah, yes, the day we break out our finest red, white, and blue gear, fire up the grills, and pop open a cold beer or two.  We sit outside and look up in the sky to see the display of fireworks.  Last year, we put Jack to bed instead of letting him watch the fireworks because, after all, the fireworks start after Jack's bedtime.  This year, we're going to be brave and let him watch the fireworks, if he will.

We have some things going for us that I hope will equal a successful fireworks show:

  • Jack's had relatively few meltdowns this weekend.  That could continue into tomorrow!
  • He's been in therapy, so we have ways to help Jack cope with sensory overload these days.
  • Jack's never gone into overload from thunder.  Fireworks can't be too different, right?
  • We can watch the fireworks from our front yard, so we avoid the crowds and Jack can go inside if he does overload.

We also have reasons to fear that things won't go well:

  • Jack's had relatively few meltdowns this weekend.  He's due.
  • He's been in therapy, but we've seen no improvement so far with Jack's ability to cope with sensory overload.  People talking too loud still freaks him out.
  • Jack's never gone into overload from thunder, but I've basically given up trying to predict what will make him go into overload, because I've been wrong before in predicting it and I'll be wrong again.
  • We can watch the fireworks from our front yard, so going inside doesn't really take away the noise from the fireworks.  Believe me, my dog freaks out every year about it.
I'll be sure to share on Tuesday how Jack's fireworks experience went over, but until then, everyone have a safe and happy 4th.  Enjoy some brewskies, some grilled food, some good times, and remember, you're probably not a pyrotechnician, so don't shoot fireworks off like you are.  Don't give the EMTs a reason to remember you!

Sunday, July 3, 2011

Autism Is...

I feel it bears repeating, but if you've met one child with autism, you've met one child with autism.  They're all wonderfully unique.  That being said, here is what autism is (to me)...

Autism is...

...being judged based off of the one autistic child a person has ever encountered, even though there is a wide range of abilities on the spectrum.

...throwing out the child development books, because they can't help you now.

...being able to repeat words heard on TV or spoken by other people, but being unable to understand the meaning of that word or use it to communicate.

...knowing that there is something that your baby wants or needs, but he can't say it.  He can't even point to it.  Unless it's within reach, he won't even reach for it.

...hearing over and over again that "that's not autism; all 2-year olds have tantrums" when your child can't handle the noise in a restaurant, a sticker on their hand, or the activity level at the park.

...hearing "ashes, ashes" and having to reply "we all fall down" a 100 times a day.

...never hearing your child say "Mama" from across the room when he needs you.

...hearing "Hi Jack!" instead of "Hi Mommy!" when you go to get him after naptime.

...watching the same episodes of Thomas the Tank Engine and Baby Signing Time to the point of where you have them memorized, too.

...melting down at the sound of a vacuum cleaner or an armored car, but not melting down at the sound of lightning.

...never knowing what tastes and textures will make your child throw up.

...a child that never wants to be rocked by you or cuddle, but wants to be picked up, swayed side-to-side, and squeezed when he's overloaded.

...weird sensory stuff that, no matter how much you try, you'll never quite understand.

...bottles of bubble solution carefully lined up on the floor in the kitchen.

...the endless opening and closing of cabinet or closet doors.

...routine upon routine upon routine and never deviating, because Lord help us if we do.

...saying "I love you" and giving hugs and kisses a million times, but never getting it in return.

...throwing your old hopes and dreams in the trash and adopting new ones.

...still feeding your nearly 2 1/2 year old, because he cannot do it himself.

...having more therapists than friends.

...watching your child not even notice the other children in the room, unless they move one of the toys he's carefully arranged.

...coming home from playdates and crying because children a year younger than your child are so much more communicative and advanced.

...learning to brush the dirt off and keep going.

Saturday, July 2, 2011

No Answers

We survived Jack's upper GI series at the hospital with little drama.  Jack was obsessed with a large model train installation in the patient registration lobby, and he spent the entire I was registering him squealing at the train.  He was in heaven.

Everything went very smoothly in radiology.  What can I say...these people are pros.  Jack had to take some barium, so they put it in a bulb syringe and got it down him with a bit of gagging, but no vomiting.  Woo hoo!  Jack screamed through the entire procedure, but the nurses managed to hold him down and the radiologist was able to get what he needed quickly.  The whole thing took around an hour.  After that, we left, balloon in hand, for home to wait for the results.

The results were not what we'd hoped.  We had really hoped that the testing Jack had undergone in the past couple of weeks would yield some answers as to Jack's persistent vomiting since birth.  Alas, they haven't.

Here's what we know.  Despite having a low electrolyte level, Jack's blood work came back normal.  No allergies, no metabolic problems, no celiac.  So, that's good news.  Jack doesn't have a life-long allergy or a metabolic condition to deal with.  Jack's upper GI series came back normal as well.  That means that there are no structural abnormalities in Jack's upper GI tract.

Good news, right?  Well, yes and no.  No, because it doesn't explain the vomiting at all.

We're going to give the Prilosec about 3 more weeks to (hopefully) start working.  After that, if Jack's vomiting hasn't decreased, Jack's facing an endoscopy and pH testing.  I really don't want my baby boy to have an endoscopy, but I also want him to get some relief.

So, we wait.  It seems like the story of your life with a special needs kid.  You're always waiting.  Waiting at a therapist's office.  Waiting for a government agency to provide services.  Waiting for answers.  Waiting for test results.  Just waiting.

The waiting for answers is the hardest.  You know something's wrong, but no one can put their finger on it.  Jack keeps throwing up, and no one really knows why.  It's looking more like it's just severe sensory issues, but then the only thing that can be done is more therapy.  I love eating, so I want him to enjoy it, too.

We'll just keep running throw up loads in the laundry until then.