February 15, 2012

Dream, my little love.

Dream of trains that talk

of bears that eat honey and sing songs

of blue puppies, of paw prints

of every precious thing a childhood can hold.

Laugh, my little love.

Toss aside the standards of the world

for they matter so little – your world is your own…

Your happiness is the purest expression of joy that I have ever known.

Rest, my little love.

You are safe here.

You are my baby, born into a world that would not understand,

entrusted to me

for always.

We love you with depth unimaginable.

We protect you with every fiber of our being.

We celebrate you today, the day you arrived

and changed our lives for good,

for not-always-so-good,

forever.

Pride of purpose

Stephen will be 12 soon – in 13 days to be exact – and that will mean that we’ve known he has autism for almost a decade.  Most years I’ve done a post to commemorate his birthday, and maybe I’ll still do that, but I felt inspired to get some thoughts out today.

Autism is still a horrible, frightening, frustrating disease, disorder, whatever.  There are times when it breaks my heart and makes me feel hopeless…but not nearly as frequently as in the past.  And, honestly, part of the reason is that I’m finally on a good medication that keeps me from having total freakouts on a daily basis…but there is another element.  Stephen tries harder every day to learn useful words.  I’ve also found him on more than one occasion lately doing his own Google searches – holding a video in one sweet, soft, babyish hand while he diligently types the name of the video with the other one.  He used to always come and get one of us to do it for him.

So even with a child this affected, time brings improvements…glacially slowly, perhaps, but the overall trend is positive.

Something else has been creeping into my consciousness recently.  A perspective change of sorts…having a child so very dependent upon you for every need can (and does) often feel like an overwhelming burden.  It’s a hard life, nearly devoid of spontaneity and spur of the moment events…but what I’ve realized is that there is a graceful dignity that can imbue nearly every aspect of this life.  We are Stephen’s caretakers.  We take care of a soul who, without a caring network of family and teachers and friends, would be utterly lost.  There is a sense of pride in keeping him neat and clean and as well-fed as possible.  There is a peaceful feeling that comes with knowing that his hair smells of shampoo, that his clothes are clean, soft, and comfortable, that his socks are straight on his feet so the seams won’t press against his toes…  He can’t tell us when small things are uncomfortable or irritating…and I’ve found honor and purpose in caring for my son…in making him smile, in hearing his laughter when his daddy blows bubbles while Stephen’s in the tub, in seeing his big brother engage him and tickle him till he laughs that precious laugh, in seeing his obvious delight when one of us understands what he’s saying.

We could do our “duty” and make sure he is appropriately fed, clothed, and sheltered.  But there IS joy to be found in trying to understand him – to decipher the problems, to try to find solutions, and yes, to honor this little human person, to give as much scope as possible to a life limited by a cruel disorder.  I have always known that his soul shines, his innocence untarnished…to find deeper truths in this life of ours is a blessing that I embrace thankfully.

YouTube Therapy

David pointed out to me this morning that I haven’t written in a long time…also, that I tend to come to this blog as a last resort, most often when I’m fed up, in pain, mad, or in despair.

Guilty.

My writing seems to flow most easily from a place of pain.  I’m not sure what that says about me.  I’ve always heard that to be an artist, one has to have suffered.  It seems rather fancy and pretentious to consider myself an “artist,” but since art is about creating, and I’ve created this blog…I’ll let it stand.  So perhaps I’ve just taken that suffering thing too seriously.

Regardless, I want to build on a former post about Thomas and Stephen’s self-designed speech therapy.  Stephen continues to love love LOVE watching various videos on YouTube.  Like some autistic children David read about, Stephen doesn’t seem to be able to watch and listen simultaneously – it’s just too much to process.  So, with much repetition, he will watch a video segment, then turn his head away, cocking his ear toward the speaker and listen.  Watch, then listen.  Watch, then listen.  It can get annoying, but when you realize that he’s trying to learn, it’s a bit easier to stand it.  After watching/listening, he’ll try to say whatever’s being said, or sing the song being played.  It’s really precious to see.

We’ve continued to notice that he is also using the phrases appropriately in various situations during his day.  “Whatever is HAPPENING?” is a popular one when he’s, well, wondering what is happening.  We still hear “I can’t stop! Help! Help!” or “Oh, no, I’m in trouble!” when there’s a crisis.  And this morning, a sleepy Stephen who wasn’t ready to get dressed for school declared: “Of all the beastly luck!  Confound that ridiculous Colonel Hathi.”  (Stephen is Shere Khan the tiger and I am Colonel Hathi the elephant in this scenario. That’s from “The Jungle Book,” for the uninitiated.)

It is no less than astounding to see this boy, so trapped and encumbered by autism, continue to find his own way to communicate.  He is still a delight and a joy when he is happy – dancing through our lives with his smiles and belly laughs. 

Overall, things at our house are, dare I say it, smooth at the moment.  David, Kerry and I have settled into the relative peace, and as a team we are learning more about riding the waves of Stephen’s ups and downs.  It helps to have each other to lean on.  Kerry is as laid back as ever, calm and unruffled.  David has become rather masterful at figuring out the reasons behind some of Stephen’s meltdowns.  And thanks to my doctor’s help, I seem to have found a good anti-anxiety medicine, and I feel stronger and more capable of weathering those storms.

Thanks to David for giving me the nudge to write this morning.  It’s good to acknowledge the bright moments, and I’ve neglected to do that at times.  So, we will keep taking each day as it comes, knowing that we really can handle whatever happens.

Maybe

I woke up feeling unsettled today and the morning has continued to follow a downhill spiral.

Maybe it was because I went to bed feeling down – I’d said something that wasn’t intended to be hurtful to David but came across that way.  I get so frustrated with myself for rarely thinking carefully before I speak.  I cause myself untold problems because of this propensity.  Apparently, some people don’t choose to vocalize their every waking thought.  Who knew?  <sigh>

Maybe it was because Kerry got irritated due to these factors:

1. He was running late and I had only tried to wake him up 3 times.  Gah!  What is my problem?
2. His hair was not doing its flip-thing properly.  He said, and I quote, “I should always dry my hair before I go to bed at night.”  Umm…and how many times did I ask him last night if he wanted a little help drying his hair?  Twice.  He of course said, “No,” with that mildly irritated scorn that 13 year old boys have mastered.

(To Stephen’s credit, he was lovely and sweet and happy this morning.  Thankfully.)

Maybe it was because I tried to do too much before leaving for work (my fault, but I love to come home to made-up beds).

Maybe it was because after I finally got on the road the lady in front of me started moving when the light turned green then inexplicably slammed on her brakes instead of continuing to turn right.  No cars coming.  No emergency vehicles coming.  No small children wandering in the street.  I didn’t hit her, thankfully, but did this cause me to slosh coffee all over?  Oh, yes.  Yes it did.  Did I have a napkin?  No.  No I did not.  Did I dig a used paper towel (used for what?) out of the side pocket of the car door and clean it up?  You bet.

Maybe, just maybe, it was because I realized I had to get gas, that cute little gas icon mocking me as I contemplated trying to make it to work without getting gas (quickly surmising that with the morning I was having, running out of gas would NOT be a good thing – like it ever is?).  Or perhaps the fact that it took approximately 47 minutes (give or take) to fill up my car because the pump kept clicking off after 0.000032 gallons went into the tank.  *squeeze pump*  *CLICK* *pump, pump, pump* *CLICK!!!*  Repeat sixty-two times and you’ve got it.  ARGH.

Maybe it was because there was a record number of idiots who should have never been given drivers licenses on I-65 this morning.  You know, those people who whip around you like they’re on the vice squad and involved in a chase, only to find out that the cars in this lane are at a standstill just like the other two lanes?  And somewhere down 65 from my exit there must’ve been a collision of two of those model drivers, and it slowed down everything, and I was running late already from having to get gas…

Maybe it was because I dragged myself into the office with my various bags, purse, lunch, etc. and accidentally bumped someone.  I quickly said, “Oh, sorry!” only to be fixed with a glare, eyerolling, and a sort of “hmmppphhh!” kind of noise.  I barely brushed them!  Remember the old “excuse me for living, the graveyard’s full!”?  I should’ve yelled that, really loudly.  Don’t you think?

Maybe, possibly, it was because when I finally stumbled to my desk and got my computer going, I had an email from my bank with this subject line: “Helpful Ways to Avoid Overdrafts.”  Oh, well, here we go.  Within this email I’m going to find some solid advice.  I can just tell.  I’ll bet I can even guess one of the suggestions: “Keep plenty of money in your account.  This will keep your balance positive and insure no more fees for overdrafts!”  Double argh. 

Well, it wasn’t quite that bad, but it did start off with a bit of chiding:

We realize that it's not always easy to keep track of your spending [HA!] and the exact balance in your checking account [are you kidding? it’s easy – Z-E-R-O] — and Regions wants you to know that we're here to help you maintain financial control [awwww!  you guys are so sweet!]. Our records indicate that you have incurred overdraft fees several times over the last year. 

Oh, really?  How nice of you to notice.  “Several times”?  My OD fees alone have probably financed some CEO’s last vacation to Aruba.

Then it goes on to give me several options about tying my account to a savings or money market account (excuse me while I laugh uproariously) or to a Regions credit card (excuse me…more laughing).

So, eight “maybe’s” later – I think that at the root of it all is that I am just plain old tired.  Tired of being “strong.”  Tired of being “special.”  Tired of astounding people who “just don’t know how you do it.”  (News flash – we DON’T.  We almost always feel worn out, or worried or isolated or misunderstood.) Tired of rarely having a cogent thought.  Tired of not remembering what it’s like to be normal, to have a normal life, friends, social events, of being so worn out at the end of the day that I don’t have the energy to do anything beyond what has to be done.  Tired of watching my husband struggle to deal with things that are out of his control, yet impact him at every turn – with no one to listen or understand or care but me.  We try.  We try so hard to stay positive, to look for the little things, to smile.  But sometimes it just doesn’t work anymore.

So.  There.  BLEAAAGH to this day. 

“I think I’ll move to Australia.”

*For the uninitiated among you who haven’t read the original book which happens to be about Alexander’s Terrible, Horrible, No Good, Very Bad Day – go, find it, read it, and laugh.  It’s a classic.

**Pssst.  Thanks for letting me vent.

Like pulling teeth

Going to the dentist isn’t anyone’s favorite activity, I suppose.  Stephen isn’t fond of it.  Over the years I’ve tried a variety of dental situations: when he was small and “holdable” I took him to a dentist that would give him light sedation (Versed) by putting the medicine in his nose.  Yeah, it sounds bad but it worked – and he couldn’t spit it out.  Anyway, that went fairly well back in the day.  He would get kind of drunky and I could then hold him still enough (usually by sort of sitting on him) to get his teeth cleaned and checked.

Cue a growth spurt.  That dentist was only authorized to dispense so much Versed, and before long, that smallish dose didn’t work anymore.

So, I found out about the Sparks Dental Clinic at UAB, where they see special needs patients.  We started out slow, trying to acclimate Stephen to the dentist, hoping for the kind of step-wise success we’ve seen over the years with haircuts.  I did social stories and pictures, and slowly Stephen got a little more used to going into the exam room, and with much wheedling and coaxing and dental students literally on the floor, upside-down, getting glimpses of his teeth, we “went to the dentist.”  This pseudo-dental care was working well enough, I guess – I kept telling myself that I’d keep an eye out for problems (a cavity or somesuch) and IF something happened, well, the Sparks Clinic folks assured me on more than one occasion that they’d just “have to handle it.”

Uh huh.

Perhaps, looking back, I should’ve been suspicious on our very first visit to Sparks, when Stephen refused to go from the waiting room to the exam room, and the staff stood there and watched me struggle to half carry, half drag my large child, that maybe that whole “we help special needs families” claim wasn’t all it was cracked up to be.

But anyway, as long as Stephen wasn’t having dental problems (that I could see) I kept trying their easy-does-it approach.  Every few months we’d go through the motions.

Until about a month ago, when I noticed that Stephen’s left canine adult tooth was coming in, and the corresponding baby tooth wasn’t loosening up as others had done.  He’d had a few baby teeth that lingered after the adult teeth started coming in, but literally within days of the eruption of the adult tooth, the baby one would give up and come out.

So, I called Sparks to tell them that it seemed we had a problem that was going to need taking care of, as they’d promised me repeatedly that they could handle.  They suggested oral sedation.  After a couple of weeks of back and forth phone calls, and even a doctor visit, we couldn’t agree on a good choice for oral sedation that would give us the best chance of success.  Stephen doesn’t respond well to being forced to take meds, they often have the opposite effect intended, and then he refuses to take his nighttime meds because he’s suspicious.  It’s a slippery slope.  At one point I was facing having to give Stephen an injection MYSELF, and hope that it would calm him.

As I’d observed on prior visits, Sparks does have some papoose boards for restraining patients.  In case you don’t know what those look like, here’s a charming artist’s rendering of a papoose.  It’s a padded board with attached velcro/fabric “wings” that wrap around and hold snugly.

That child looks blissfully content, possibly even asleep. 

I had seen papooses at Sparks, but we never had a reason to use one…yet.  I had pretty much decided that we were going to have to convince someone to agree to putting Stephen to sleep to get this tooth out, and the Sparks folks said that they categorically did NOT do general sedation.  I did some research and found that UAB Hospital’s Dental School had a pediatric clinic – the website said that they handled “difficult” cases, and often referred children for general sedation if the situation warranted.  I made phone calls, talked to a very nice lady who told me to bring Stephen and that she was almost sure they could help, and if they couldn’t, well, they’d refer us to an oral surgeon.  The lady even mentioned papooses and she said, “We’ll help you!”

Music to these old ears, let me tell you.  As the parent of a very special kid, there is nothing like hearing someone who is not related to you and therefore not obligated say, “I’ll help you.” 

So, the weeks passed with much trepidation and fluttering of stomach, and when the day arrived I got Stephen to his appointment, we waited half of forever, and then we were called back.  We met with a very petite student dentist with a soft Chinese accent who asked me the standard questions and then said, “Well, let’s see about getting that tooth out.”  She led us back through a maze of dental chairs and said, “Okay, Stephen, have a seat.”

You might have difficulty imagining the dumbfounded look at my face at this point.  Other staff members gathered and the litany began:

“Stephen!  Here’s a little truck!  Now have a seat!”  “Stephen, look at this mirror!  We’re going to brush your teeth now!  Sit down.” “Hey, Stephen, want a sticker?”

I stood there for a few minutes and then finally said, “I went INTO DETAIL over the phone when I made this appointment about how difficult this was going to be.  He is NOT going to fall for any of those tricks.  He is terrified.  What about the papoose board?”

Muttering and shuffling of feet.  Glances at each other.  Someone said, “Well, get the release so she can sign it….Mom, are you WILLING to sign a release?”

AAAAGGGGHHHHHH….  “Give me the paper.  I was willing to sign it 20 minutes ago.  I TOLD everyone beforehand he was going to have to be restrained.  I just NEED HELP.”

I tried to lead Stephen back to where the board was now set up.  He went to the floor.  Finally, with the help of three students, we picked him up and carried him to the board.  A very brief struggle later, Stephen was tucked peacefully and safely into the papoose.  It’s not easy to see your child trussed up, at least at first, but while he fussed a little, and wiggled a little, overall…HE WAS FINE.  He calmed down.  David had suspected that he might feel oddly comforted by the pressure, and I believe he was.  It isn’t the answer for everyone, but I was so thankful that these contraptions existed at that moment.  Stephen’s teeth got a thorough cleaning, they were able to see that he has no cavities, they numbed his gums and pulled his tooth…it went unbelievably well.  I was in tears – relieved, a bit sad at the overall situation, but mostly relieved.  And I kept thinking…These people HELPED me.  Now, I can bring him here, get him on the board, and we can take excellent care of his teeth!  I was so happy.  A problem, solved.  Love it.  I kept thanking everyone, over and over, tears of relief on my face.  I kept saying, “The people at Sparks wouldn’t help me like this!  They refused!” and the UAB folks said, “Huh…but they’re specifically aimed at helping special needs people.”  I told them that’s what they say, but… “That’s why I’m here!  You guys told me you’d help!”

Then…as we gathered ourselves to leave, someone rejoined the group to say, “Oh, we called Sparks.  It turns out that a while back, an adult patient who was being restrained got loose and kicked a staff member.  So now, their policy is that the caregiver has to do the restraining.”

That’s the policy of the Special Needs Clinic?  I shook my head.  “Well, that’s counterintuitive, isn’t it?”  I was so happy with these UAB folks, and we were all buddies, just having a chat as we walked out of the clinic.  “I mean, if someone needs a papoose to begin with, it sort of goes without saying that some assistance is going to be needed, right?  Wow, that’s crazy.”

We rode down in the elevator to check out at the desk.  As we approached, the dental student who had taken care of Stephen said, “So, he doesn’t need to eat or drink for 30 minutes because of the fluoride treatment.  He shouldn’t have any bleeding from the extraction.  So we are requesting that for his next routine appointment….he’ll need to be seen at Sparks.”  And we arrived at the checkout desk.

I had my dumbfounded look on again.  “But…you all just saw that the papoose is the KEY for Stephen!  And at Sparks, they won’t help with that!  It took FOUR people to get him into it…  How are we supposed to manage that?”

She avoided my eyes, “Yes, well…at Sparks they are set up to have the time and resources to…”

“But…you JUST saw what was needed for him!  And you’re telling me they won’t DO that there!”

“I’m sorry but we don’t have the time or staff resources to see Stephen on a regular basis.”  At this point the receptionist chirruped, “So, we’ll see Stephen back in six months?”  The student muttered, “Ummm…no, we’re referring him to Sparks,” to which the receptionist bleated, “Oh, Sparks!!!  Great!  So, mom, what else can we do for you today?”

I was in shock.  I felt like I’d been handed a million dollars, then had it snatched away.  Someone had solved one of my problems, then taken the solution back.  You just don’t DO that to people so desperate for help. I was in tears again, but these were born of frustration and anger.

I summoned up as much gumption as my depleted resources would allow, and said, “No, there’s nothing else you can do.  I appreciate what you all did today, but knowing that we aren’t welcome here again is very hurtful and frankly it makes me angry.”

Receptionist: “Oh, it’s not that he’s not WELCOME…”  Dental student: “No, we want to help…but…”

I looked at them levelly.  Neither of them could finish.  Exactly.  No answers were possible.  I understand that nobody who works with difficult patients wants to be kicked or scratched or head-butted by those patients.  But when a clinic advertises a certain kind of help, putting unrealistic limitations on that help is downright cruel to families who cannot manage alone.

So.  The tooth is out.  Stephen’s teeth are clean.  We know the papoose is the key.  But my heart is bruised.  I was shown compassion and understanding, I relaxed and felt thankful, then me and my little guy were unceremoniously shown the door with the admonition not to return.  Not a great feeling.

I’m going to keep fighting.  I’m going to get in touch with the Dean of the School of Dentistry.  I’ll write letters and make phone calls and I’ll figure out something.  I’m trying to glean the positives and move on, but there’s nothing like being taken to the top of the mountain…then pushed down the other side.

A Really Useful Engine

Although I seem to have gotten up on the wrong side of the proverbial bed this morning…although I wasn’t in the best mood due to life’s little foibles and frustrations…although I chose the exact wrong time to try to discuss a thorny issue with my teenager (earning a painful criticism from my husband to boot)…

My sweet little Stephen was in a bright and happy mood this morning, cheerful and smiling from the moment his eyes opened.  He laughed and uttered his trademark “digga digga” sound, which is code for “all is right in my world,” as he danced around the living room waiting for his bus.

Needless to say, it’s always a good and joyful thing for Stephen to start the day off thusly.  And as I sit here in my cubicle, trying feebly to get some work done, I decided that I’d try to relate something quite interesting that David noticed a while back.  It’s encouraging and a little bittersweet, and it bears repeating here.

I’ve mentioned many times the love Stephen has for Thomas the Tank Engine and his friends.  This love of Thomas is apparently very common amongst kids with autism – the movement, the repetition, the sing-songy words and phrases.  Stephen will often get on YouTube, find some favorite Thomas videos, and for long stretches of time he will rewind and play the same sentences over and over and over and over: “’Ohhh,’ screamed the cars. ‘Grrrrr,’ growled Diesel, and he scuttled away to sulk in the shed.”  We’re talking hundreds of repetitions of this section of video.  Stephen can look away from the monitor and purely by feel, with a flick of the mouse button, he can pinpoint the spot multiple times without fail.  But what David noticed was that Stephen will play it a few times, then he will repeat the phrases.  Sure, it’s in “Stephen-ese,” but when you hear the video right before Stephen speaks, you can tell he’s repeating it.  Thomas’ Custom Speech Therapy Services, available right in your home, for the low, low price of an internet connection.

As if that weren’t helpful enough, we’ve also noticed that Stephen is trying to use the phrases he’s learning as a means to really communicate.

In the middle of a recent tantrum over a choppy internet connection, as he emitted his squeals and screams, Stephen was unmistakably saying, “Help! Help!  I can’t stop.  I CAN’T STOP!”  Yes, sure, in the video it’s James or Percy, out of control on the tracks with runaway coaches…but…  Stephen has now on more than one occasion used these words when he’s having a hard time.  Coincidence?

Another time we were in the car in the midst of a thunderstorm.  It started hailing.  The noise was loud, strange, and totally unexpected.  Stephen covered his ears and said, “Whatever is HAPPENING?”  Thomas says that, I think, when he encounters something on the tracks.  Just a fluke?

Just this past Saturday, again with internet problems, Stephen said, “Oh, no!  I’m in trouble!”  Yes, another quote from a video…but…is that ALL it is?

We are inclined to think that’s NOT all it is.  Somehow Stephen is learning, through these videos and books, that those phrases convey certain things, and it seems to help him to use those same phrases to try to communicate with us.  Frankly, we’ll take it.  We are used to trading bits of dialogue with him just for fun, so why not use the phrases he knows and loves to try to help him understand?  I tried an experiment on Saturday.  He was cranky and agitated about something, and I looked him in the eye and said, “All right, don’t fuss!  All right, don’t fuss!” just like Annie and Clarabel say to Thomas.

You know what?

He stopped.  Just for a little bit, but he DID stop fussing.  As with so many other parts of our life, we’ll just roll with this and see where it goes.  In case you were wondering, though?  We can confirm that Thomas IS a really useful engine. 

The reluctant traveler

It's 12:45 a.m. I'm sitting in the cramped, stuffy "spare" room at my parents' house, typing on my dad's antiquated PC. Stephen is asleep on his air mattress in their living room. I can't sleep. David will read this, note the time, and tell me: "I can't believe you didn't fall asleep!"

Stephen and I drove here at 11:30, after he became more and more restless and wired and refused to go to sleep at home. He had his meds as usual. Eventually I even gave him an extra 1/2 dose, which I'm allowed to do when he's extra stubborn (and it's been months since I had to do that). He wouldn't lie down. He kept wanting lights off, then on. He began acting like it was morning and he'd just woken up. Unbelievable.

I have no idea what happened. I am at a total loss, and that is my least favorite state of being.

He got sleepy on the ride here, but woke up as soon as I had to get him out of the car. He launched right back into his whiny, agitated state. My mom and I sat in the den and looked at the walls. At one point she said she could tell that I was not doing very well. I agreed. Finally I told her to go to bed. I closed off part of the house so at least Stephen wouldn't disturb my parents. I lay down with him and tried to hug him tight to see if that would help. It didn't.

So, I left the room, called home to let David know we were okay (well, safe anyway) and just waited. After about 5 minutes, I heard nothing, and peeked to see that he had finally collapsed.

This kind of thing used to happen all the time. Thankfully this is an isolated incident. It better be. I just can't go here, like this - not anymore.

The worst part of this whole evening is that Stephen had been fine earlier. I was feeling calm(ish) and looking forward to a good night's sleep. This came out of nowhere. What if it happens again? I know I shouldn't think that way, but I do.

The other disturbing thing is that I sit here dry-eyed. I can't even lessen the pain I feel by crying. Or sleeping.