There's still another day and maybe it's too early to call this week a complete waste of time and a study in missed opportunities, but it certainly feels that way.
Gus - smart and cunning as he is cute and sweet - has firmly put me back not just on square one but seemingly beyond the starting line alltogether.
So far this week: I've forgotten all my GRE words, all I know now is poopie and potty related terms. I've laundered a load of smelly laundry almost every day. I've managed to clean nothing, straighten up little and simply watch the soap residue accumulate in the bathroom sink (I've lots of time to watch anything in the bathroom sink). I've lost sleep, showered once and at least (Thank God) excercised four times for an hour each time. I would not be sane if I hadn't. I've spent endless hours watching Gus' behind for any suspicious movement, schlepped him off to sit on the potty more times than I want to admit, all with little to show for.
Gus on the other hand, has enjoyed wearing next to nothing almost all days. Poop in new adventurous locations (the front yard today) and aquire a definite distaste for the potty and anything related to it. In fact, his mind is pretty much made up after this week. He doesn't like sitting on it, being near it or talking about it.
Wow, and we stayed home for all that.
On the bright side, he did poop in the potty once and has stayed dry four out of six nights. I try to be grateful. I try. I try. I try.
Poopie Score:
Undies: 3
Potty: 1
Front Yard/Livingroom Floor: 2
Saturday, April 30, 2011
Day 5 - Poopie Training
It's just like Gus to firmly place me back on square one, after a brief moment of elation way back on Wednesday and the belief that I had whittled the "squirmy hours" down to a three-hour period in the early afternoon.
Today, we started the day off with a big No. 2 - in the undies. It came totally unexpected early in the morning and was preceeded by little squirming or any other giveaway signs that I could have noticed had I even suspected that something was going on...
Oh well that pretty much clears the day for pursuits other than the potty kind, though we practiced sitting on the potty every two hours, but only for brief periods.
Meanwhile I watch the week go by and wonder what piece I am missing or what I am saying/doing wrong. I have no doubt in my mind that Gus is physically and mentally capable of doing what I want him to do. He has a visual schedule that he can recite by heart, a regular meal plan, enough Metamusil to be regular beyond regular, and pretty much no reason to be scared or anxious, although he now has moved on to some pretty impressive screaming and hitting tantrums every time I tell him it is time to go sit on the potty.
So I am left to wonder if I'm not properly desensitizing him to the potty, or even creating anxiety in him where I shouldn't. Is his diet not fiberous enough? Should I be prompting him to go or let him decide on his own? Should or shouldn't I adjust his schedule to try to get him to go at a predictable time, or should I just wing it, which means walking on eggshells all day. One of our professional helpers is suggesting that I treat accidents with a noticeably detached, neutral demeanor (showing now disappointment or desperation, which God know I am feeling) so that Gus does not learn to get attention from me by doing the wrong thing.
Whichever way you turn it it this potty training experiment fraught with moving targets and accidental mistakes, and almost everything else is left open to interpretation.
We'll forge on.
I have laundry to do.
Today, we started the day off with a big No. 2 - in the undies. It came totally unexpected early in the morning and was preceeded by little squirming or any other giveaway signs that I could have noticed had I even suspected that something was going on...
Oh well that pretty much clears the day for pursuits other than the potty kind, though we practiced sitting on the potty every two hours, but only for brief periods.
Meanwhile I watch the week go by and wonder what piece I am missing or what I am saying/doing wrong. I have no doubt in my mind that Gus is physically and mentally capable of doing what I want him to do. He has a visual schedule that he can recite by heart, a regular meal plan, enough Metamusil to be regular beyond regular, and pretty much no reason to be scared or anxious, although he now has moved on to some pretty impressive screaming and hitting tantrums every time I tell him it is time to go sit on the potty.
So I am left to wonder if I'm not properly desensitizing him to the potty, or even creating anxiety in him where I shouldn't. Is his diet not fiberous enough? Should I be prompting him to go or let him decide on his own? Should or shouldn't I adjust his schedule to try to get him to go at a predictable time, or should I just wing it, which means walking on eggshells all day. One of our professional helpers is suggesting that I treat accidents with a noticeably detached, neutral demeanor (showing now disappointment or desperation, which God know I am feeling) so that Gus does not learn to get attention from me by doing the wrong thing.
Whichever way you turn it it this potty training experiment fraught with moving targets and accidental mistakes, and almost everything else is left open to interpretation.
We'll forge on.
I have laundry to do.
Thursday, April 28, 2011
Day 4 - Poopie Training
No picture today. Not sure what I would take a picture of anyway, other than my growing pile of smelly laundry, which I'm currently washing.
I knew there was going to be a low point in this undertaking, but after yesterday's poopie in the potty, I was hoping (and praying) that it was already behind us...not so.
Today I'm feeling very low on top of feeling a fair amount of self-loathing.
Flying high after yesterday's score on the Potty side, I decided to treat myself to going to bookclub and sit for two hours and talk with girlfriends about a book, instead of staring at Gus' behind and talking about Poopoo and peepee.
It felt great, but I immediately regretted it after coming home to the news that Gus had yet again managed to poop another load into his undies while Daddy wasn't watching.
On top of that, Gus didn't stay dry throgh the night, although I think he awoke from the need to pee this morning and quickly got up to fetch me, but he had already wetted his pyjamas as well as his pillow (how to you launder a pillow?)
To make matters worse (at least in my poopie obsessed mind) Gus squirmed around all afternoon - from 2 to almost 4 p.m. - while I followed him around like a love-sick puppie, only to end up planting a poopie on our livingroom carpet, while I snuck a 5-minute look at my e-mail.
Damn computer.
I'm trying hard to not feel frustrated about all this right now, but I do feel like I'm not gaining the upper hand and Gus is simply getting better at waiting for his moment, instead of figuring out how to sit on the potty and get his business done.
Yikes.
So we'll forge on. I'm already getting friendly with the idea that this poopie immersion thing will continue into a second week (I might keep him home from preschool or we might try to go on without diapers, while he goes to school, I'll figure out the details by Sunday) and I'm not extatic about that.
Deep inside I was hoping that Gus is ready, is smart enough and wants to do this, but maybe I'm just kidding myself.
As for the Autism bit of this, there are plenty of horror stories out there of boys (and girls) who are still in diapers at 9, 11 or even later in life. I'm so determined to make sure Gus stays within an acceptable timeframe and does not go to kindergarten in a diaper.
He will have enough to overcome once he goes to school - I can't bare the thought that diapers will set him even further apart from everyone else.
Can you tell I'm down on myself right now? What was I gaining by checking my e-mail? Well, spending two aimless hours (not in play mind you) circling around 2 seconds with one toy or activity or another is tiresome, and I was simply looking for a bit of distraction.
And distraction I got. From now on I'm only texting, making and taking calls, and spending time on the computer when Gus is down for his nap. I'm not giving him another split-second to do his sneaky thing.
Poopie Score:
Undies:4
Potty:1
I knew there was going to be a low point in this undertaking, but after yesterday's poopie in the potty, I was hoping (and praying) that it was already behind us...not so.
Today I'm feeling very low on top of feeling a fair amount of self-loathing.
Flying high after yesterday's score on the Potty side, I decided to treat myself to going to bookclub and sit for two hours and talk with girlfriends about a book, instead of staring at Gus' behind and talking about Poopoo and peepee.
It felt great, but I immediately regretted it after coming home to the news that Gus had yet again managed to poop another load into his undies while Daddy wasn't watching.
On top of that, Gus didn't stay dry throgh the night, although I think he awoke from the need to pee this morning and quickly got up to fetch me, but he had already wetted his pyjamas as well as his pillow (how to you launder a pillow?)
To make matters worse (at least in my poopie obsessed mind) Gus squirmed around all afternoon - from 2 to almost 4 p.m. - while I followed him around like a love-sick puppie, only to end up planting a poopie on our livingroom carpet, while I snuck a 5-minute look at my e-mail.
Damn computer.
I'm trying hard to not feel frustrated about all this right now, but I do feel like I'm not gaining the upper hand and Gus is simply getting better at waiting for his moment, instead of figuring out how to sit on the potty and get his business done.
Yikes.
So we'll forge on. I'm already getting friendly with the idea that this poopie immersion thing will continue into a second week (I might keep him home from preschool or we might try to go on without diapers, while he goes to school, I'll figure out the details by Sunday) and I'm not extatic about that.
Deep inside I was hoping that Gus is ready, is smart enough and wants to do this, but maybe I'm just kidding myself.
As for the Autism bit of this, there are plenty of horror stories out there of boys (and girls) who are still in diapers at 9, 11 or even later in life. I'm so determined to make sure Gus stays within an acceptable timeframe and does not go to kindergarten in a diaper.
He will have enough to overcome once he goes to school - I can't bare the thought that diapers will set him even further apart from everyone else.
Can you tell I'm down on myself right now? What was I gaining by checking my e-mail? Well, spending two aimless hours (not in play mind you) circling around 2 seconds with one toy or activity or another is tiresome, and I was simply looking for a bit of distraction.
And distraction I got. From now on I'm only texting, making and taking calls, and spending time on the computer when Gus is down for his nap. I'm not giving him another split-second to do his sneaky thing.
Poopie Score:
Undies:4
Potty:1
Wednesday, April 27, 2011
Day 3 - Poopie Training
(Whooooheee!!! These are my first choices of possible pictures to publish today - No. 2: Gus with his Poopie-in-the-Potty treats and No. 3: A still life of my treat, a Bourbon on the rocks sipped leisurely mid-afternoon - but then I remembered that I promised myself to not take another picture of bodily excrement...and then Gus flushed it, despite the fact that I toyed with saving it for Jacob to see, oh well...)
This is the text I sent a few friends this afternoon, right after I celebrated Gus and sent him off to play with Mater and a lollipop the size of a small cabbage:
"After almost 5 hours of hard labor, Gus delivered a healthy poopie, that appears to weigh at least 1/4 lb and is about 6 inches long at 3 p.m. this afternoon. Gus is resting comfortably with Mater. Mom is overjoyed."
It felt like birth, it really did.
And, as with birth, I'm so glad we did it. Now I am. At about 2:30 I was ready to bang my head into a new shape against the tile wall, before reading yet another poopie book and watching Gus squirm around our tiny 30 square-foot bathroom for the hundredth time in an effort to avoid what we had barricaded ourselves in there for in the first place.
One. Poopie. In. The. Potty.
As I watched him, I had visions of a not very flattering Halloween costume that I would make him this year in the shape of a cartoon bomb complete with a fuse line and a sign in the front that says "Full of Sh@#"...because that's what Gus was most of this morning and early afternoon. I described him to our dear friend, Anna, who happens to be our rockin' occupational therapist, as "full to here (neck) with fiberous foods, a fair amount of Metamusil (I should get a sponsorship for mentioning their product so loyally) lots of liquids and absolutely no poopie to bring relief." after OT we even went and had a double portion of Gus' favorite Mac 'n' Cheese at our neighborhood grocery store's little bistro and after that he looked positively stuffed, bloated and uncomfortable.
With a belly tight as a drum, he couldn't bend down nor really stand up and in the end he couldn't even look at me any more, he simply squirmed against the bathroom wall, while I read or sat quietly.
Then I locked him in the bathroom.
No, not because I'm cruel or European, just because I'm losing my mind. We had played around with the lock out of sheer boredom, and falling yet again for one of Gus' ruses to go find a toy, I left the bathroom only to hear the door fall into lock behind me.
I could tell from the sound it made that it was shut and that I would not get back in without some fancy tools or brute force.
A frantic call from me to Jacob and from Jacob to one of his firefighter buddies, brought quick help in the form of two big burly men with lock pocks and screwdrivers, who managed to open the door without too much delay, only to surprise Gus, who had been busy squirming and avoiding the potty...
The actual big moment came an hour later, after a brief call to Daddy, while Gus rolled around in stupor on our bed. He suddenly sat up, said "I need to peepee" and bolted to the potty only to sit on it and push it out in a milli-second.
Amazing!
Now he is napping off his lollipop-induced sugar haze and I am sipping my bourbon, feeling very accomplished.
Oh, I almost forgot to mention. He stayed dry again during the night without as much as a single squirm.
Poopie Score:
Undies:2
Potty:1
Tuesday, April 26, 2011
Day 2 - Poopie Training Continued.
(This is Gus' multi-step visual schedule for his No. 2 routine)
When you live with a person (a small person) with Autism, velcro moves from obscure craft aid to center of your universe, literally just inches from the sun and about as precious as diamonds. In our home so many things are velcroed, that I have designated a special pair of scissors for the task.
Most people with autism are highly visual and learn in Gestalt (meaning they learn in chunks) so seeing what's ahead and where they are is VERY IMPORTANT. As for Gus, he likes a visual schedule for the things he is not so sure about and doesn't have the communication skills to walk himself through yet (he likes to talk out loud for things he has mastered). He also is a bit (a very big bit) of a perfectionist (hmmm I wonder who he got that from?) and prefers to take on new tasks only after he is sure that he can succeed at it (again, who does that remind you of?) Visual schedules simply spell out - visually - the individual steps required to accomplish a goal. Making the individual steps removable and designating a place for them to go into (see the envelope below the schedule?), shows that things are moving ahead and that the end is in sight, Gus is especially fond of putting steps behind him.
It also keeps the carrot (in this case Mater from Pixar Cars) front and center. If you are Gus, Mater is worth going through bathroom hell for.
We chose small impersonal graphics, as pictures of the real thing seemed to have the opposite of the desired effect (Gus did not like the picture of my poopie in the potty, nor did the young man at the counter at CVS. I have since gotten a color printer).
Gus uses a visual schedule for a variety of tasks, including cooking his own Mac n' Cheese, washing his hands and asking Daddy to help him climb his favorite tree. We also use one for dreaded things like Doctor's office and fun things like going to the store, on a hike or to a play date.
Being a notorious list maker myself (my weekly grocery list is a work of strategic economy and my daily to-do's often hint at a highly OCD-developed mind) I have no trouble seeing how schedules help in daily life and as with most tool for autism, they work great with neuro-normal kids, too.
The idea is that in future years, Gus will either be able to come up with his own schedules for things that confuse him or will be able to follow a schedule someone else has made for him. Once he can read and write, these schedules will turn into something very similar to my daily to-do lists.
Now, let's focus on putting a check mark behind the poopie bullet on my list.
Day 2 - Poopie Training
(Rion stops by to entertain us on Day 2 of our self-imposed exile for immersion potty training)
One more poop to "learn" from this morning. Gus like a shifty-eyed mini-crook managed to distract me sending me to look for a toy, then limped over to sheepishly point to the big (enormous) bump in his pants.
"Want to clean it, Momma."
No, not really.
On a more positive note, Gus slept soundly through the night without even a drop of peepee in his undies and I wanted to jump up and down this morning - only I was too tired to jump, much less move. I had gotten up every two hours to check on him.
After Monday, today we are following a strict schedule of wake and bedtime, as well as evenly spaced food times, including snacks (and "doctored up" yoghurt a la Metamusil) I let Gus drink as much as he wants until 7 p.m. and he gets treats for going to pee and extra treats if he tells me that he needs to go pee. For No. 2 we use a visual schedule (more on that in a later post) and there are big "toy treats" waiting to be played with, if I poopie actually hits the water.
According to my charting, things get dicey between 10 and noon, which is when Gus fights going to the bathroom and wants nothing more than to be off the toilet. When he is not on the potty, his attention span rivals that of a fruit fly, as he can barely focus on anything while trying to hold the urge to go. I feel for him as I follow him in endless, aimless circles through the kitchen, dining room, living room and his room, which means I don't work, clean or study. I don't run errands, return phone calls or check e-mails. All I do is listen to the radio and follow Gus.
So much for spring break. With a schedule like that we can't really go very far, but we are trying to get out at least once a day and improvise with new games (and some computer time) at home.
On one blog I read this morning a Dad complained about having to be "excited about absolutely nothing" and I can certainly sympathize with that.
But we'll forge on.
Poopie Score:
Undies: 2
Potty: 0
Monday, April 25, 2011
Day 1 - Poopie Training
(Gus showing off Mack from Pixar Cars, which he received as a potty treat last Wednesday when he surprised us with two No. 2's in the potty in one day!!!)
Day 1 - Start off with a bump in the pants
Gus, who is 3 1/2, has been bladder control trained for more than one year now and for the most part can stay dry and in underpants all day - except when it comes to No.2. For that he waits for a diaper...and he waits and waits, and waits patiently if need be. So far he has managed to hold it in for as long as 7 hours and usually I will cave in and slap on a diaper, at which point he'll do his biz within minutes.
So this week, I've cleared our schedules (Gus is home from preschool for spring break) and we are doing what I describe as Potty Immersion Training Week (or potty boot camp), meaning the diapers have gone bye-bye and Gus will only be allowed to be in underpants, including nighttime!!
The plan is to track his every move (bowel and otherwise,) write them down along with his food and liquid intake, as well as physical activities and figure out a way to get him to let me know when he has to go and teach him (with a visual schedule and lots of treats) how to do it right and feel good about it. We are staying close to home and keeping a very regular anti-social schedule with lots of fiberous snacks, loose clothing, predictable naptime and bedtimes, a positive outlook and an extra stack of sheets, a mountain of treats, juices and chocolates. I'm hoping that within seven days we can both figure out what works and what doesn't.
So far today, we're failing, but failure - according to our autism team, all of whom are backing me up in this plan - are "learning moments", so with that being said, we've had our first learning moment this morning at 11:30 when Gus announced that he had to make a poopie and when I lunged to his side, quickly ammended it to "need to clean the poopie" which we did, just a tad bit deflated.
I expect my laundry pile to be extensive and odious this week. I hope my attitude won't stink as quickly.
I did manage to sneak some metamusil into his yoghurt this morning and I'm feeling very shifty about that, but again, that has been recommended to me to keep the "learning moments" coming and the possibility for success high. I'm not changing much about his diet, since he likes fresh fruit and is very regular as far as his bowel movements are concerned.
As for the physical setup, I've given the bathroom a "makeover" that should make it more relaxing to Gus' mind, removing all distraction, stocking it with immediate treats, extra wipes, some soothing toys, favorite books and games, as well as a low light. I've even plugged in the iPod for some soothing ambiance...all I can say so far is that I start yawning every time I'm in it, but Gus has already had a few anxious moments sitting on the potty today.
Poopie Score:
Undies: 1
Potty:0
Wednesday, April 6, 2011
A is for Autism
I have not been truthful with you for almost one year now. It’s been a heavy burden tocarry. If nothing, else a year has gone by and a life-changing development like ours warrants full disclosure to those who care enough to follow us on this blog.
April is Autism Speaks month, and - the sad irony is not lost on me- it was in April one year ago that we began the heart-breaking process of having Gus evaluated for a series of tell-tale signs of this puzzling and utterly confounding disorder.
By June – after a gut-wrenching, stressful and at times humiliating battery of tests - ¬we had an affirmative diagnosis and since then Gus has become a busy little boy with an individual education plan that grants him a special education spot in a 5-day morning preschool, as well as occupational and speech therapy.
Autism is a neurological disorder affecting boys and to a growing degree girls. It presents itself with a variety of symptoms at the age of 2 to 3. Though first described in the 1940s and heavily researched and popularized in the past 10 years, the exact causes of Autism are not known and at this point are believed to be a combination of genetic abnormalities and environmental triggers. It affects a child’s ability to function in our society, manifesting itself in a brain and nervous system that has trouble sorting, decoding and processing the millions of sensory messages we face in every instance of our daily lives.
At age 3, Gus has tested at the high-functioning end of the spectrum that is Aspergers-Autism. He will be re-tested throughout his school career and may move up or down on the spectrum.
Gus has many of the tell-tale markers and is far off the range for neuro-normal functioning children at his age: He has some trouble with eye-contact, pronounced echolalia (endless repeat of memorized phrases) amazing rote memory, a stunted ability to report or answer questions spontaneously, as well as a tendency to wanting to be alone or play alone, instead of playing alongside or with others.
As for the good news, Gus also displays some innate skills and early achievements that other kids with Autism struggle with their entire lives. He loves being affectionate, he is not shy and enjoys telling jokes he has memorized. He is a champ at dealing with unforeseeable events and he also tests at the level of a 5-year-old when it comes to physical mile markers, not suffering from loss of balance or fine/gross motor disabilities. He loves animals, the outdoors and learning new skills, which he masters with an uncanny and un-childlike tenacity. Most of all, he is verbal – though he talks only in tested phrases and haltingly, he talks and likes to talk - I’m grateful to God for his words every day.
For the first six months on this sad path, I didn’t sleep more than 4 hours at a time. Thoughts of a lonely, peculiar, young man, named Gus, forming in my mind. Feeling jealous of everyone else’s child, feeling guilty for wanting to change my child, feeling sad – simply very sad.
I now sleep a little more reliably with the help of some melatonin. The trick is to stay asleep, if I wake up in the middle of the night I’ve lost the fight and spend a day feeling weepy and vulnerable, and worried that I’m a lousy mom.
I run really early after those nights, seeking relief in the mindless pounding of my legs, letting my mind wander to happier days and hoping that the adrenaline will carry me for at least part of the day.
In the past 12 months, I have gone through too many moments of humiliation to count. One of the worst came when a doctor, though decorated with many impressive degrees and distinctions, but also outfitted with an amazingly apropos lack of bedside manners, informed me that I should have my genes mapped if we planned to have more children – on the way home I could feel the radio-active sludge that is my genetic material course around my reproductive system. I’m still working through that one, all the while wondering what could have possibly possessed that man to say something so insensitive to parents who have just found out their child will have a life-long disability.
I have trouble reading books or watching TV shows or movies featuring individuals with Autism. There is a long reading list that has been recommended to me. I dread it and leave it untouched, I’m an unapologetic and uninformed mother of a child with Autism, owing up to it is the best I can do.
I try to ignore news reports about immunization or untested wonder drugs or overly restrictive diets. We tried the gluten-free, casein-free thing. We didn’t see a difference other than in our grocery budget. I step lightly around anything I see or hear where the word “autism” is paired with the word “cure” since it all seems to be the product of some equally desperate parent somewhere who has latched on to something with a fanaticism that scares me.
On bad days I feel singled out – 149 neuro-normal children, then Gus, then another 149 neuro-normal children, at least that’s the current statistic -will have that effect on you. I try to hold my head up high, but setbacks are as frequent as they are unpredictable and painful. Misguided interactions with those around us weaken my spirits on a continuous basis.
I brace myself every day to tell another person - or six or 10 – of Gus’ diagnosis, trying to put on a mild smile that signals that I’m tough enough to deal with it. The reactions run the gamut from tired clichés to heart-felt sympathy; “Special” is a loaded word in my world. I don’t feel special, regardless of how many people insist that I am. I would give my writing hand to be ordinary again. I’m not special, I just didn’t have a choice. I would love to have one of those not-special children – and I feel deeply guilty for wanting that.
Most people want to focus on how good we seem. How good Gus seems, how good the therapies must be going, how wonderful everything seems. I try to indulge them, but on a crappy day that seems like adding much too much insult to my injury. I’m constantly taken aback by how everyone expects me to be upbeat. I wonder why do I have to make others feel better about my predicament, shouldn’t it be the other way around? I’m starting to dread chance encounters, telephone calls and meeting up with friends, because it all seems like a never-ending curtain call for me to rouge my dark moods a fake pink for the benefit of others. We may seem great, but who can I tell that Gus has swatted me point-blank in the face twice last week, for reasons not yet determined, but leaving me in tears nevertheless? Who can I go to when I’m all out of ideas about potty training, a child who has outsmarted me? I don’t want to talk to another mother of a child with Autism - that seems like punching someone who is already down. I’ve been told repeatedly that I’m not alone in this, yet this struggle to be socially graceful and truthful at the same time feels very lonely to me.
There are so many other stumbling blocks in my daily life: Photos of Gus when he could still look straight into a lens and smile. The well-meaning mother suggesting a play date eventhough her son is visibly bored with Gus. The proud father at the playground, who won’t shut up about how developmentally-advanced his little daughter is. The many well-meant “you must read this/see this or that” or “Didn’t Einstein have Autism?” The family get-togethers, birthday parties, doctor visits, holidays, haircut appointments, photo ops, the play dates that leave me depressed. The thought that Gus will be ridiculed in elementary school, bullied in middle school and – at best – ignored in high school. The thought that I will never stop having these thoughts. The thought that these thoughts are driving me crazy.
One autism professional I’ve met recently said to me “if you know one child with Autism, you know one child with Autism.” It is so true as I’m finding so preciously little to compare Gus to and mountains of information, tips, tricks and suggestions that do not apply to us. It seems like the disorder itself tries to isolate us.
As you can tell, I’m not at peace with the diagnosis - not yet, maybe never.
I struggle to know what God’s intentions are for a child who has trouble relating in a world that is all about facebook, twitter and social networking. I’m at a loss there and have no answers – not yet, maybe never. Pray for me if you can. I’m not losing my faith, but I struggle with my purpose in life and with Gus’.
I mourn the loss of that sweet innocence of childhood that I so enjoyed with Gus. For two years, everything was possible and nothing was bad or wrong or wasted. Everything new was funny and wonderful. Now everything is either progress or distress or just plain and simple stress. I catch myself following Gus around with a mental clip board, ticking off the good, the bad and the ugly. I so miss that carefree time and wonder if I didn’t appreciate it enough. Didn’t relish it enough. Didn’t thank God for it enough.
The best part of my day are the hours I spend alone with Gus – hiking, reading, learning numbers and letters, going to physical therapy, running errands. We are a good team together. He is funny, easy-going, affectionate, playful, fearless, an eager student and adventurous play buddy. Most of all – unlike me – he is thoroughly unconcerned with what others may think or say with words or looks. I pray that he stays that way for a long time. I dread the time when he’ll take notice that others judge him.
Those carefree afternoons are the times when I daydream of moving us to a remote location leaving all those pesky social to-dos behind us. We could simply focus on us and Gus. I know someday he will have to live on his own or at least without us, so we wouldn’t do him a service removing him from society. Still, it’s tempting whenever Gus turns to me with one of those luminous smiles that is meant for me and only me.
When you’re 12 months in, people subtly begin to suggest that you move on and pull yourself together, find those boot straps and heartily yank on them and roll up those sleeves while you’re at it. I, do that with Gus every day. I work hard with him and for him and use all my positive energy to urge him on. As for the rest I can’t do it. Simply can’t. This diagnosis is so much bigger than me, I haven’t got the strength or wisdom to stand up to it completely – not yet, maybe never.
I’m profoundly sorry for not ending this on an uplifting note. Yes, there are many improvements and achievements and I thank God every day for the husband I have, a man who sees Gus as perfect and treats him accordingly, a man who loves us both and keeps our family strong and makes our lives fun. I am also deeply grateful for family and friends who have tried and sometimes found the right words and stuck by me even though I’m an unpredictable mess of feelings and reactions. I’m not as much fun as I used to be, but I have people who care about me regardless and I’m grateful for that.
So this is my half-cheery attempt at a closing. If you care about us, take time this month and do/say something nice to someone affected by Autism. Run a race, buy a tote bag, slap a sticker on your bumper or borrow a book from the library and educate yourself. Moreover make it a point to compliment a haggard looking mom with an out-of-control or odd-behaving child – he/she may not have Autism – but there are plenty of parents who are defenseless and gravely wounded in the crosshairs of the ignorant. I know that from personal experience: The tsk –ing from the old woman at the grocery store or the stares from other mothers at the playground. I fantasize about the bumper stickers and T-shirts I’m printing “He has autism, what’s your problem?” or “Autism is the new normal” or “He has an Autism diagnosis, You are just plain ignorant”, but then again, would that mean anything to them?
So make someone feel less judged, less special. Do it, help us, help others. Thank you.
I will continue to write about Gus and my life with Autism, but I’m going to move these thoughts to a different blog at http://purzelbaumlein.blogspot.com go there if you want to know more, stay here if you want to see us - a family first, a family affected by Autism second.
Thank you for reading along with me.
April is Autism Speaks month, and - the sad irony is not lost on me- it was in April one year ago that we began the heart-breaking process of having Gus evaluated for a series of tell-tale signs of this puzzling and utterly confounding disorder.
By June – after a gut-wrenching, stressful and at times humiliating battery of tests - ¬we had an affirmative diagnosis and since then Gus has become a busy little boy with an individual education plan that grants him a special education spot in a 5-day morning preschool, as well as occupational and speech therapy.
Autism is a neurological disorder affecting boys and to a growing degree girls. It presents itself with a variety of symptoms at the age of 2 to 3. Though first described in the 1940s and heavily researched and popularized in the past 10 years, the exact causes of Autism are not known and at this point are believed to be a combination of genetic abnormalities and environmental triggers. It affects a child’s ability to function in our society, manifesting itself in a brain and nervous system that has trouble sorting, decoding and processing the millions of sensory messages we face in every instance of our daily lives.
At age 3, Gus has tested at the high-functioning end of the spectrum that is Aspergers-Autism. He will be re-tested throughout his school career and may move up or down on the spectrum.
Gus has many of the tell-tale markers and is far off the range for neuro-normal functioning children at his age: He has some trouble with eye-contact, pronounced echolalia (endless repeat of memorized phrases) amazing rote memory, a stunted ability to report or answer questions spontaneously, as well as a tendency to wanting to be alone or play alone, instead of playing alongside or with others.
As for the good news, Gus also displays some innate skills and early achievements that other kids with Autism struggle with their entire lives. He loves being affectionate, he is not shy and enjoys telling jokes he has memorized. He is a champ at dealing with unforeseeable events and he also tests at the level of a 5-year-old when it comes to physical mile markers, not suffering from loss of balance or fine/gross motor disabilities. He loves animals, the outdoors and learning new skills, which he masters with an uncanny and un-childlike tenacity. Most of all, he is verbal – though he talks only in tested phrases and haltingly, he talks and likes to talk - I’m grateful to God for his words every day.
For the first six months on this sad path, I didn’t sleep more than 4 hours at a time. Thoughts of a lonely, peculiar, young man, named Gus, forming in my mind. Feeling jealous of everyone else’s child, feeling guilty for wanting to change my child, feeling sad – simply very sad.
I now sleep a little more reliably with the help of some melatonin. The trick is to stay asleep, if I wake up in the middle of the night I’ve lost the fight and spend a day feeling weepy and vulnerable, and worried that I’m a lousy mom.
I run really early after those nights, seeking relief in the mindless pounding of my legs, letting my mind wander to happier days and hoping that the adrenaline will carry me for at least part of the day.
In the past 12 months, I have gone through too many moments of humiliation to count. One of the worst came when a doctor, though decorated with many impressive degrees and distinctions, but also outfitted with an amazingly apropos lack of bedside manners, informed me that I should have my genes mapped if we planned to have more children – on the way home I could feel the radio-active sludge that is my genetic material course around my reproductive system. I’m still working through that one, all the while wondering what could have possibly possessed that man to say something so insensitive to parents who have just found out their child will have a life-long disability.
I have trouble reading books or watching TV shows or movies featuring individuals with Autism. There is a long reading list that has been recommended to me. I dread it and leave it untouched, I’m an unapologetic and uninformed mother of a child with Autism, owing up to it is the best I can do.
I try to ignore news reports about immunization or untested wonder drugs or overly restrictive diets. We tried the gluten-free, casein-free thing. We didn’t see a difference other than in our grocery budget. I step lightly around anything I see or hear where the word “autism” is paired with the word “cure” since it all seems to be the product of some equally desperate parent somewhere who has latched on to something with a fanaticism that scares me.
On bad days I feel singled out – 149 neuro-normal children, then Gus, then another 149 neuro-normal children, at least that’s the current statistic -will have that effect on you. I try to hold my head up high, but setbacks are as frequent as they are unpredictable and painful. Misguided interactions with those around us weaken my spirits on a continuous basis.
I brace myself every day to tell another person - or six or 10 – of Gus’ diagnosis, trying to put on a mild smile that signals that I’m tough enough to deal with it. The reactions run the gamut from tired clichés to heart-felt sympathy; “Special” is a loaded word in my world. I don’t feel special, regardless of how many people insist that I am. I would give my writing hand to be ordinary again. I’m not special, I just didn’t have a choice. I would love to have one of those not-special children – and I feel deeply guilty for wanting that.
Most people want to focus on how good we seem. How good Gus seems, how good the therapies must be going, how wonderful everything seems. I try to indulge them, but on a crappy day that seems like adding much too much insult to my injury. I’m constantly taken aback by how everyone expects me to be upbeat. I wonder why do I have to make others feel better about my predicament, shouldn’t it be the other way around? I’m starting to dread chance encounters, telephone calls and meeting up with friends, because it all seems like a never-ending curtain call for me to rouge my dark moods a fake pink for the benefit of others. We may seem great, but who can I tell that Gus has swatted me point-blank in the face twice last week, for reasons not yet determined, but leaving me in tears nevertheless? Who can I go to when I’m all out of ideas about potty training, a child who has outsmarted me? I don’t want to talk to another mother of a child with Autism - that seems like punching someone who is already down. I’ve been told repeatedly that I’m not alone in this, yet this struggle to be socially graceful and truthful at the same time feels very lonely to me.
There are so many other stumbling blocks in my daily life: Photos of Gus when he could still look straight into a lens and smile. The well-meaning mother suggesting a play date eventhough her son is visibly bored with Gus. The proud father at the playground, who won’t shut up about how developmentally-advanced his little daughter is. The many well-meant “you must read this/see this or that” or “Didn’t Einstein have Autism?” The family get-togethers, birthday parties, doctor visits, holidays, haircut appointments, photo ops, the play dates that leave me depressed. The thought that Gus will be ridiculed in elementary school, bullied in middle school and – at best – ignored in high school. The thought that I will never stop having these thoughts. The thought that these thoughts are driving me crazy.
One autism professional I’ve met recently said to me “if you know one child with Autism, you know one child with Autism.” It is so true as I’m finding so preciously little to compare Gus to and mountains of information, tips, tricks and suggestions that do not apply to us. It seems like the disorder itself tries to isolate us.
As you can tell, I’m not at peace with the diagnosis - not yet, maybe never.
I struggle to know what God’s intentions are for a child who has trouble relating in a world that is all about facebook, twitter and social networking. I’m at a loss there and have no answers – not yet, maybe never. Pray for me if you can. I’m not losing my faith, but I struggle with my purpose in life and with Gus’.
I mourn the loss of that sweet innocence of childhood that I so enjoyed with Gus. For two years, everything was possible and nothing was bad or wrong or wasted. Everything new was funny and wonderful. Now everything is either progress or distress or just plain and simple stress. I catch myself following Gus around with a mental clip board, ticking off the good, the bad and the ugly. I so miss that carefree time and wonder if I didn’t appreciate it enough. Didn’t relish it enough. Didn’t thank God for it enough.
The best part of my day are the hours I spend alone with Gus – hiking, reading, learning numbers and letters, going to physical therapy, running errands. We are a good team together. He is funny, easy-going, affectionate, playful, fearless, an eager student and adventurous play buddy. Most of all – unlike me – he is thoroughly unconcerned with what others may think or say with words or looks. I pray that he stays that way for a long time. I dread the time when he’ll take notice that others judge him.
Those carefree afternoons are the times when I daydream of moving us to a remote location leaving all those pesky social to-dos behind us. We could simply focus on us and Gus. I know someday he will have to live on his own or at least without us, so we wouldn’t do him a service removing him from society. Still, it’s tempting whenever Gus turns to me with one of those luminous smiles that is meant for me and only me.
When you’re 12 months in, people subtly begin to suggest that you move on and pull yourself together, find those boot straps and heartily yank on them and roll up those sleeves while you’re at it. I, do that with Gus every day. I work hard with him and for him and use all my positive energy to urge him on. As for the rest I can’t do it. Simply can’t. This diagnosis is so much bigger than me, I haven’t got the strength or wisdom to stand up to it completely – not yet, maybe never.
I’m profoundly sorry for not ending this on an uplifting note. Yes, there are many improvements and achievements and I thank God every day for the husband I have, a man who sees Gus as perfect and treats him accordingly, a man who loves us both and keeps our family strong and makes our lives fun. I am also deeply grateful for family and friends who have tried and sometimes found the right words and stuck by me even though I’m an unpredictable mess of feelings and reactions. I’m not as much fun as I used to be, but I have people who care about me regardless and I’m grateful for that.
So this is my half-cheery attempt at a closing. If you care about us, take time this month and do/say something nice to someone affected by Autism. Run a race, buy a tote bag, slap a sticker on your bumper or borrow a book from the library and educate yourself. Moreover make it a point to compliment a haggard looking mom with an out-of-control or odd-behaving child – he/she may not have Autism – but there are plenty of parents who are defenseless and gravely wounded in the crosshairs of the ignorant. I know that from personal experience: The tsk –ing from the old woman at the grocery store or the stares from other mothers at the playground. I fantasize about the bumper stickers and T-shirts I’m printing “He has autism, what’s your problem?” or “Autism is the new normal” or “He has an Autism diagnosis, You are just plain ignorant”, but then again, would that mean anything to them?
So make someone feel less judged, less special. Do it, help us, help others. Thank you.
I will continue to write about Gus and my life with Autism, but I’m going to move these thoughts to a different blog at http://purzelbaumlein.blogspot.com go there if you want to know more, stay here if you want to see us - a family first, a family affected by Autism second.
Thank you for reading along with me.
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