Stephen is 16 today.
Instead of going to get his driver's license, he's getting a trip to Arby's.
I almost didn't write today; it's been so long since I've tried to put my thoughts down like this. Maybe today's the last post, ever. It feels like maybe it should be...but I reserve the right to come back if the spirit so moves.
In an effort to keep this at a manageable length (I'm at work and incredibly busy - no time for long, rambling posts anymore) I'll say that overall, life with Stephen has settled into a fairly consistent pattern. Pattern is a key word here, because his OCD rituals and routines are abundant and unrelenting. We still occasionally have some incidents of SIB, but nothing like it used to be. For that we are incredibly thankful.
Still no progress on the toileting front. Who knows if that will ever change? I counted up recently, and conservatively speaking we've changed over 36,000 diapers over his lifetime. It's become part of life, end of story.
Because of my philosopher-husband and the things he's read and shared, for some time now I've been trying to learn to accept what is. Seeing as how there really isn't any choice, it's surprising how often we human beings fret and stew and worry over what is. And with autism, there's sometimes a lot of WHAT IS going on.
It's not easy. Never will be. But it's manageable. We've found ways to escape the isolation, at least occasionally. We laugh. We love our children. We read. We do our best, most every day, to accept what is, and to find joy where we can.
So, no. No excitement over driving. No girlfriend. No real independence. None of the things that most 16 year old boys have or want or enjoy.
In essence, no real voice. Hence the reference in the title above. To quote from a movie that I hear Stephen watching clips from pretty often:
Boyd: No fair! Louie didn't say "polo"!
Ella: Well, he can't talk.
Boyd: Can't talk? And he calls himself a Trumpeter Swan? I don't think so.
Billie: Louie can't help it. Father says he's, you know,
[whispering]
Billie: defective.
Boyd: Well, defect...if you can't talk, you can't play!
To the eyes of many, Stephen would be considered "defective." To be fair, his brain doesn't work like it should. Poor soul sometimes has a hard time making sense of the world around him, and he can't "play" like most kids his age.
I've alluded to this before, but I think, thanks to David and to so many who love Stephen and feel fiercely protective of him, I've finally settled into the what is of his life: his innocence, his joy, his irresistible laughter, his precious face, the very lovableness of him...through these things, he finds his voice.
Stephen, my sweet love, my baby, my son... I hear you.
I love you. Happy birthday, precious one.
Monday, February 15, 2016
Wednesday, April 1, 2015
April
*Update 4/2/15 at bottom*
Everyone is lighting it up blue and being aware of autism, so it must be April.
Disclaimer: the following is not uplifting. It is not inspirational. It is not full of grace or wisdom or patience learned over years of hardship. It contains no acceptance. No calm resignation of what is.
I think everyone is AWARE of autism by now, right? I mean, sure, half the people I meet still think "Rainman" when I say autism, but surely very few people are unaware.
Here are facts of which I am aware, today, April 1, 2015:
Everyone is lighting it up blue and being aware of autism, so it must be April.
Disclaimer: the following is not uplifting. It is not inspirational. It is not full of grace or wisdom or patience learned over years of hardship. It contains no acceptance. No calm resignation of what is.
I think everyone is AWARE of autism by now, right? I mean, sure, half the people I meet still think "Rainman" when I say autism, but surely very few people are unaware.
Here are facts of which I am aware, today, April 1, 2015:
- I hate autism. Oh my god, how I hate it.
- I am sick of living with the obsessive obsessive OBSESSIVE words and videos and sayings and phrases. I'm sick of puffing out my cheeks and making certain faces a hundred times a day and it's still never enough.
- I'm sick of Blue's Clues. Dora. Bob. THOMAS THE TANK ENGINE. I am sick of it all.
- I'm sick of changing diapers. This is my fifteenth year of doing so, multiples times per day, every single day and I am TIRED of it. I'm tired of carpet that smells like pee (or worse) if you sniff it too closely no matter how many times I've scrubbed it.
- I'm sick of medicines that seem to work...or do they?
- I'm sick of not being able to TALK to my son and ASK HIM WHAT IS WRONG when he's screaming.
- THE SCREAMING. The self-injurious behaviors. The martial arts helmet we had to buy to protect him FROM HIMSELF.
- The unpredictability. I come home from work and my clothes go here. NO, they need to be hung up. No, they need to be right HERE.
- I'm tired of people offering "suggestions" and implying I don't try hard enough if I don't follow them.
- I always appreciate kindness, but the endless loop of "you and your husband must be very special, for God to have given you such a special child" is wearing paper thin. We do not feel SPECIAL. We feel cursed. Let the parents of high functioning kids who are quirky and have narrow interests claim that God-given specialness. Because let me tell you that there isn't anything special about a child imprisoned inside a malfunctioning brain, whose needs and care must always take the forefront, whose family suffers and is isolated and alone.
- "Have you thought of potty training him?" SERIOUSLY? I can't even go on here, but other parents of similar kids will get my incredulity.
- "Maybe it's time to find a group home for him..." Again...no comprehension of what's involved in signing your helpless child's life away, trusting a non-verbal and beautiful child's safety and well-being to total strangers - NOT TO MENTION that it's not quite as simple as picking up the phone: "Oh, hello, loving and amazing autism caregivers! I believe we are ready to check Stephen in to his lovely room where he'll be engaged, safe, and happy! See you on Tuesday!" Please. GIVE ME A BREAK.
- Finally, on this, the first day of "autism awareness month," I am aware of the following:
- No matter how hard it is, no matter how piercing the screams, how repetitive the quotes from Thomas become, no matter how particularly we must select certain items and place certain items and eat certain items from certain bowls...I know in my soul of souls that Stephen is the innocent. He was born the way he is, it just took a while for it to emerge, and I have no idea how life looks through his eyes. I don't know what his favorite color is. I don't know what he dreams. I don't know how songs sound to him - if it sounds "off" or if his speech is just too affected to pronounce certain words. I can't imagine what pain he feels when he screams, when tears course down his cheeks - especially when it happens out of the blue, like last week when I took him to IHOP. And he had a meltdown, full-fledged...screams that would pierce your eardrums, in a packed-out restaurant full of post-churchgoers. And they stared. And the entire restaurant went silent. I couldn't help my child. I couldn't leave because that would make it worse. I sat holding Stephen's hand and crying uncontrollably. My thoughts went somewhere along the lines of: "Oh dear god, whyyyyyy? Why here? What is WRONG? WHYYYYYYYYYY?"
- All that said, there is no blame to be placed on my man child's admittedly broad shoulders. David, Kerry, my mother, Stephen's teachers and aides, and I all do our best, every day, to care for him lovingly. I think most days we succeed, after any storms have passed and the screams are replaced by ecstatic giggles (as if a switch was flipped). Then the exhaustion sets in. Mental, emotional, physical. All of me, every part of my awareness, cries quiet, hot tears as I huddle in the dark bathroom, face buried in a towel and really just letting it go. I'm sure every one of us who care for Stephen have our moments of breakdown and dread.
- People tell me that they admire us. They don't know how we do what we do. That's the thing...we DON'T do very well in some ways. We love each other, and we support Kerry's amazing musicianship but overall we are stuck in rigid patterns, afraid to venture out into our own neighborhood because what if Stephen... Afraid to invite people over because what if Stephen... Unable to take a quick drive to the store without sneaking and planning because...Stephen.
- Yet...there is a joy beyond comprehension when he's happy. It's otherworldly in its intensity at times, and while we obviously welcome smiles and cackling laughter after a bout of screaming, it's still...odd. Cute, but odd. The way he plays is the way a toddler plays. No video games. No bugging his big brother for rides. Nothing is like I dreamed. He'll never go on a date, or talk to a girl, or live independently. EVER.
I truly don't know what the future holds. There are waiting lists for adult care and services (such as they are). If I was a millionaire, I could plan out his life and make sure he would always be okay. But I'm not. And I can't. I fill out forms and do interviews and look and look and look for answers. I try to solve insurmountable problems. I try to work and keep life going at home, when most of the time I don't have more than a few minutes to myself, or time to spend with the husband who shares my life and the care of both of our sons.
I'll close with what I found myself sobbing into the hem of the bathrobe that hangs on a hook in my bathroom. What began as incoherent blathering, tears dripping onto my knees as I sat there, shifted into equally incoherent phrases and whispered pleas (to whom?)...but the last thing my subconscious shouted in a loud whisper was, "I just want a little normal*. And I'll never, ever have it."
Update, 4/2/15:
*I misused the word "normal" here. While posting in a highly charged emotional state is a great way to get gut feelings out there, it's not exactly the ideal conditions for clear and accurate writing. Therefore, I wanted to amend my post. What I want, what any of us wants, is peace, warmth, love of family and friends, and to live life fully and well. Today, after a night of sleep, and waking up a happy boy who also slept well, I can say unequivocally that I do, in fact, have many of those things, more often that I realize. What I really should've said is that I just want a little...cure for autism. I want a little life without autism. And, while I doubt I'll ever, ever have it, I still have much to be grateful for. I've learned a lot about myself and what it takes to try to live and "joyfully participate in the sorrows of the world," my thanks to David and Joseph Campbell for this concept.
Update, 4/2/15:
*I misused the word "normal" here. While posting in a highly charged emotional state is a great way to get gut feelings out there, it's not exactly the ideal conditions for clear and accurate writing. Therefore, I wanted to amend my post. What I want, what any of us wants, is peace, warmth, love of family and friends, and to live life fully and well. Today, after a night of sleep, and waking up a happy boy who also slept well, I can say unequivocally that I do, in fact, have many of those things, more often that I realize. What I really should've said is that I just want a little...cure for autism. I want a little life without autism. And, while I doubt I'll ever, ever have it, I still have much to be grateful for. I've learned a lot about myself and what it takes to try to live and "joyfully participate in the sorrows of the world," my thanks to David and Joseph Campbell for this concept.
Wednesday, February 18, 2015
A Growing Season
This morning I sat curled up in a corner of the couch, sipping coffee, writing in my journal, thinking over the past few days, and realized I was mentally chastising myself for not posting an entry on the 15th.
So I missed posting a birthday blog for Stephen. This year we actually celebrated Kerry's 17th birthday (which was on the 11th) on the 15th, while Stephen was enjoying a visit with Mamaw and Papa. It just worked out that way, especially since we stopped having a specific party or celebration for Stephen. It continues to be a relief and a mercy for all involved that we made that decision. No cake, no presents, no hubbub that bewilders a boy who doesn't understand. It's absolutely the right thing to do. Or not do.
So, as I tried to let up on the self-criticism, I realized that certainly I could post on the 18th. I'm way too picky and hard on myself about things that I shouldn't be...
And I want to be more conscious of writing about the good things that happen on the mountaintops of our lives, not just slogging tearfully through those dark valleys. So, in honor of Stephen's 15th birthday I want to share some things about a day we spent together.
A little background: Stephen has (unlike many severely autistic kids) been to the dentist quite a few times over his young life. The very early visits, when he wouldn't sit in the dentist's chair or really open his mouth, when young dental students crawled around on the floor trying to get a glimpse ("Umm...I don't SEE anything of concern...") were challenging and ultimately didn't really accomplish too much. We moved on to visits at different offices that were all about the struggle to get him to take Versed (once or twice even having it put down his throat via his nose) and onto the papoose board made for a child half his size so he could get a rudimentary cleaning, or else I practically laid on him while his teeth were cleaned as well as possible. Exhausting but definitely more purposeful.
But then we found a dentist who truly understood our struggles and our desire to take care of Stephen's teeth, whose patience (and that of his staff) is endless and abundant.
He suggested at our last (papoosed) visit that we schedule a sedation visit to Children's Hospital, during which Stephen could comfortably rest while a really thorough cleaning was done, x-rays could be made (a first) and possibly have sealants put on his molars as a preventative measure. After much planning and paperwork and a quick check up with our pediatrician, we arrived at the hospital last Friday (the 13th...) and were quickly put into a room. Stephen was calm and happy and began asking for Chick-Fil-A 23 seconds after we got into the room.
Typically I would do my best to leave him dressed, just as you see here, to avoid upsetting him. But...he has been doing better lately with change. I'm practically crossing my fingers as I type that for fear of jinxing it. But the fact remains that he IS handling certain things more calmly: being told "no" to things he picks up at the store, etc. So, I decided to be brave and, after he got settled with his iPad, I told him we were going to put on some other clothes to see the doctor.
And he let me...
He also let me wrap a blanket around him because the room was cold.
He took his Versed by mouth without fighting.
He let multiple people come in to the room without telling them to "go 'way."
He let multiple people put strange paper things around his arm, and he DID NOT FIGHT. Or scream. Or hit himself. Or even cry. The wearing of these bracelets is unprecedented.
He giggled. He gave me kisses. I crawled up on the bed and rubbed his back and hummed songs and smelled of his hair and gave him a million high-fives for being such a sweet boy.
And then they came to roll him down to the OR. I walked beside him all the way, and he clung to my hand. He was groggy, yes, but he wasn't sure about this...and then they took him through the doors to the OR and I watched him as long as the doors took to close.
I went back to his room and waited, trying to develop my powers of telepathy or teleportation, wondering if he struggled with the mask as they put him to sleep, or if he cried or said Mama. It was a long hour, watching various kids and parents come and go on the one-day surgery floor. Finally, the dentist came and talked to me, and everything went perfectly: no struggling, no fighting, no crying...no need for sealants after going 15 years with minimal oral hygiene and NO cavities, they got x-rays and did a really good cleaning...the dentist was amazed at the lack of plaque and build-up. It's all that water he drinks, in my opinion.
And then, I heard a bed being pushed up to the room where I sat, and I saw one sock foot hanging off the end of the bed, and it was a foot I recognized. He was back, sleeping peacefully and well.
After the nurses parked his bed and left, I spent at least another hour with my chin propped on the side rail, just looking at him - this boy who should be pestering us to get his permit, following his big brother around, maybe playing football and discovering girls but is instead trapped in the world of autism...and I felt peace. Again, to revisit something David reminded me of that I mentioned in my last blog: sometimes, it's just the way things are. Fighting against what IS brings suffering. Yes, there is pain. There is sorrow and sadness and disappointment. But there is undeniable joy in this child's existence and we treasure that.
I am so proud of how he handled the sights, smells, strangeness, and discomfort of this day. He was victorious, and THAT is worth celebrating.
This last photo is my favorite. It somehow encapsulates the emotion I feel when I look at Stephen, and realize what an accomplishment it was for him to not only make it through a difficult day but to smile and laugh at the same time. My heart is broken and then mended by these soft, small hands. He endured discomfort and change with a grace that is beyond his ability to understand. He is and will always be my baby.
So I missed posting a birthday blog for Stephen. This year we actually celebrated Kerry's 17th birthday (which was on the 11th) on the 15th, while Stephen was enjoying a visit with Mamaw and Papa. It just worked out that way, especially since we stopped having a specific party or celebration for Stephen. It continues to be a relief and a mercy for all involved that we made that decision. No cake, no presents, no hubbub that bewilders a boy who doesn't understand. It's absolutely the right thing to do. Or not do.
So, as I tried to let up on the self-criticism, I realized that certainly I could post on the 18th. I'm way too picky and hard on myself about things that I shouldn't be...
And I want to be more conscious of writing about the good things that happen on the mountaintops of our lives, not just slogging tearfully through those dark valleys. So, in honor of Stephen's 15th birthday I want to share some things about a day we spent together.
A little background: Stephen has (unlike many severely autistic kids) been to the dentist quite a few times over his young life. The very early visits, when he wouldn't sit in the dentist's chair or really open his mouth, when young dental students crawled around on the floor trying to get a glimpse ("Umm...I don't SEE anything of concern...") were challenging and ultimately didn't really accomplish too much. We moved on to visits at different offices that were all about the struggle to get him to take Versed (once or twice even having it put down his throat via his nose) and onto the papoose board made for a child half his size so he could get a rudimentary cleaning, or else I practically laid on him while his teeth were cleaned as well as possible. Exhausting but definitely more purposeful.
But then we found a dentist who truly understood our struggles and our desire to take care of Stephen's teeth, whose patience (and that of his staff) is endless and abundant.
He suggested at our last (papoosed) visit that we schedule a sedation visit to Children's Hospital, during which Stephen could comfortably rest while a really thorough cleaning was done, x-rays could be made (a first) and possibly have sealants put on his molars as a preventative measure. After much planning and paperwork and a quick check up with our pediatrician, we arrived at the hospital last Friday (the 13th...) and were quickly put into a room. Stephen was calm and happy and began asking for Chick-Fil-A 23 seconds after we got into the room.
Typically I would do my best to leave him dressed, just as you see here, to avoid upsetting him. But...he has been doing better lately with change. I'm practically crossing my fingers as I type that for fear of jinxing it. But the fact remains that he IS handling certain things more calmly: being told "no" to things he picks up at the store, etc. So, I decided to be brave and, after he got settled with his iPad, I told him we were going to put on some other clothes to see the doctor.
And he let me...
He also let me wrap a blanket around him because the room was cold.
He took his Versed by mouth without fighting.
He let multiple people come in to the room without telling them to "go 'way."
He let multiple people put strange paper things around his arm, and he DID NOT FIGHT. Or scream. Or hit himself. Or even cry. The wearing of these bracelets is unprecedented.
He giggled. He gave me kisses. I crawled up on the bed and rubbed his back and hummed songs and smelled of his hair and gave him a million high-fives for being such a sweet boy.
And then they came to roll him down to the OR. I walked beside him all the way, and he clung to my hand. He was groggy, yes, but he wasn't sure about this...and then they took him through the doors to the OR and I watched him as long as the doors took to close.
I went back to his room and waited, trying to develop my powers of telepathy or teleportation, wondering if he struggled with the mask as they put him to sleep, or if he cried or said Mama. It was a long hour, watching various kids and parents come and go on the one-day surgery floor. Finally, the dentist came and talked to me, and everything went perfectly: no struggling, no fighting, no crying...no need for sealants after going 15 years with minimal oral hygiene and NO cavities, they got x-rays and did a really good cleaning...the dentist was amazed at the lack of plaque and build-up. It's all that water he drinks, in my opinion.
And then, I heard a bed being pushed up to the room where I sat, and I saw one sock foot hanging off the end of the bed, and it was a foot I recognized. He was back, sleeping peacefully and well.
I am so proud of how he handled the sights, smells, strangeness, and discomfort of this day. He was victorious, and THAT is worth celebrating.
This last photo is my favorite. It somehow encapsulates the emotion I feel when I look at Stephen, and realize what an accomplishment it was for him to not only make it through a difficult day but to smile and laugh at the same time. My heart is broken and then mended by these soft, small hands. He endured discomfort and change with a grace that is beyond his ability to understand. He is and will always be my baby.
Wednesday, January 14, 2015
The way of things
This morning, like a thousand mornings before, I put my arms around a 200-pound boy's shoulders, as he started to lift himself up off his bed to get cleaned up, changed, dressed, and ready for another day.
As I helped him sit up, his chubby cheek pressed against mine, and for the briefest moment I could've sworn I was feeling the perfect, satiny cheek of a newborn baby...the faintest scent of the vanilla lavender lotion I still put on him after his bath wafted up, and in that moment I loved him more than any mother ever loved her son.
A few nights ago I walked into the warm kitchen, darkness peering in through the windows but making no dent on the coziness inside. Stephen sat at his spot at the table, playing with the miracle otherwise known as "features iPad." His head, sporting a fresh crew cut, was uplifted and tilted slightly to the left - it's his dreamy, faraway, enchanted look. He gets that look when he's focusing on listening rather than looking, and those of us who live with him know that look well. In an instant, I took all this in - just after his bath, sitting there dreaming, slightly swaying to the music from the iPad, his t-shirt neckline shifted a bit and one pudgy shoulder peeking out - and in that moment I felt fiercely protective of him, of his innocence and purity of spirit. Had some villain burst in, intent on doing Stephen harm, I would no doubt have fought him bare-handed and won, so intense was this protective instinct bubbling up from my heart.
In the last few weeks, Stephen has had some of his absolutely priceless and joyous non-stop giggling fits...especially if his dad or I figure out something he's saying and are able to repeat it back to him, or if he watches a certain Thomas video clip over and over and finds it especially funny...and in those moments, his delight and happiness are engaging, hilarious, precious and fun. He laughs that belly laugh, barely able to speak, and one finds it hard not to join in, and just love him to pieces.
And then.
The other day, David and I came home after a long day. Stephen had had a FANTASTIC day at school (ZERO SIB's) and he had laughed and giggled with his Mamaw all afternoon. Not five minutes after my mother left, the TRANSITION problems set it, and we had a meltdown. Not a thirty minute horror, but still, even thirty seconds is bad enough... And he ended up in his room after slamming the door, screams and slaps plainly heard regardless. I dragged myself into the kitchen, all the lightness gone from my spirit, and I complained to David, "WHY does he do this after being great ALL DAY? Why do I always get the bad stuff?" (which is not even true, everybody's had their share, and could I get some cheese with that whine?)
David looked at me and said, "...Because that's just the way it is sometimes."
And so it goes. It IS just the way it is sometimes. Sometimes it's just plain awful. Sometimes I want to apparate the heck right outta there.
But then I would miss those baby cheeks, those soft little hands that pat my face, that little voice that tries so hard, that whispers "I love you!" to me, to his daddy, his brother, to restaurants he loves as he's leaving :)...his new habit of announcing things as they happen, and praising things for doing a good job: "Yoook [look]! here comes grilled cheese!" and "Well done, socks! Well done, shoes!"...the sweetness of him sleeping, looking more like five than nearly-fifteen...the laughter, the eyes that crinkle at the corners like his mama's...and the honor to be found in protecting him and loving him as best we can, for the rest of his life.
Sometimes, that's just the way it is.
As I helped him sit up, his chubby cheek pressed against mine, and for the briefest moment I could've sworn I was feeling the perfect, satiny cheek of a newborn baby...the faintest scent of the vanilla lavender lotion I still put on him after his bath wafted up, and in that moment I loved him more than any mother ever loved her son.
A few nights ago I walked into the warm kitchen, darkness peering in through the windows but making no dent on the coziness inside. Stephen sat at his spot at the table, playing with the miracle otherwise known as "features iPad." His head, sporting a fresh crew cut, was uplifted and tilted slightly to the left - it's his dreamy, faraway, enchanted look. He gets that look when he's focusing on listening rather than looking, and those of us who live with him know that look well. In an instant, I took all this in - just after his bath, sitting there dreaming, slightly swaying to the music from the iPad, his t-shirt neckline shifted a bit and one pudgy shoulder peeking out - and in that moment I felt fiercely protective of him, of his innocence and purity of spirit. Had some villain burst in, intent on doing Stephen harm, I would no doubt have fought him bare-handed and won, so intense was this protective instinct bubbling up from my heart.
In the last few weeks, Stephen has had some of his absolutely priceless and joyous non-stop giggling fits...especially if his dad or I figure out something he's saying and are able to repeat it back to him, or if he watches a certain Thomas video clip over and over and finds it especially funny...and in those moments, his delight and happiness are engaging, hilarious, precious and fun. He laughs that belly laugh, barely able to speak, and one finds it hard not to join in, and just love him to pieces.
And then.
The other day, David and I came home after a long day. Stephen had had a FANTASTIC day at school (ZERO SIB's) and he had laughed and giggled with his Mamaw all afternoon. Not five minutes after my mother left, the TRANSITION problems set it, and we had a meltdown. Not a thirty minute horror, but still, even thirty seconds is bad enough... And he ended up in his room after slamming the door, screams and slaps plainly heard regardless. I dragged myself into the kitchen, all the lightness gone from my spirit, and I complained to David, "WHY does he do this after being great ALL DAY? Why do I always get the bad stuff?" (which is not even true, everybody's had their share, and could I get some cheese with that whine?)
David looked at me and said, "...Because that's just the way it is sometimes."
And so it goes. It IS just the way it is sometimes. Sometimes it's just plain awful. Sometimes I want to apparate the heck right outta there.
But then I would miss those baby cheeks, those soft little hands that pat my face, that little voice that tries so hard, that whispers "I love you!" to me, to his daddy, his brother, to restaurants he loves as he's leaving :)...his new habit of announcing things as they happen, and praising things for doing a good job: "Yoook [look]! here comes grilled cheese!" and "Well done, socks! Well done, shoes!"...the sweetness of him sleeping, looking more like five than nearly-fifteen...the laughter, the eyes that crinkle at the corners like his mama's...and the honor to be found in protecting him and loving him as best we can, for the rest of his life.
Sometimes, that's just the way it is.
Tuesday, October 7, 2014
Autism Awareness?
I wasn't sure I'd ever write here again. I'm still not sure. I'm typing hesitantly, feeling it out.
But here goes: the other morning on my commute to work, I looked at the four cars immediately surrounding me as we zipped along the interstate, and each of the four had an "AUTISM AWARENESS" sticker or magnet or car tag. And I thought to myself how UNaware so many people are about what's really true about autism.
So, I find myself wanting to talk about some things. They are not happy things, or lovely stories, or charming anecdotes. Not this time. These are ugly and sad and unpleasant things. If you are easily offended by profanity or have a weak stomach, then please stop reading now. I'm not a "curser" by nature, unless the situation warrants it...
The 12 year battle against autism rages on. RAGE being the optimal word. Stephen had a fairly decent summer at a new school. Certainly his behavior was much, much improved compared to last summer's hell. There have been transition issues, of course, and having our school system change from a county system (with county-wide supports for special needs) to a city system that was rushed into existence with many "bugs" to work out (and I'm being very kind in this description) hasn't been an ideal situation for Stephen. I can only hope things will keep improving.
As a family we are in a perpetual state of uneasy alert, afraid of tripping the hair-trigger of Stephen's fragile equanimity. We still sneak and devise ways to avoid awakening the obsessive-compulsive beast. It works, sometimes. When it doesn't, it is a nightmare of screaming, hitting, and mental torture. Watching this baby-faced boy in obvious torment tears at your soul, at the fabric of your spirit, and those wounds fester and resist healing. It sucks and makes you want to run into the night until your legs won't carry you any further. We followed our doctor's advice to try to increase medicine dosages to a "therapeutic" level to treat OCD. The increase caused him to be erratic and the SIB increased. So back down we go...
With puberty comes some other challenges. Diapering challenges. No, he's still not potty trained. Not even close. Doesn't seem to have a clue. So, we spend thousands every year on supplies. His bed sheets are stained though they are washed and washed and rinsed and rinsed. His carpet has stains. It is HARD to clean him up now that things have changed in his pubic area. It SUCKS.
Because I have grown so very weary of all the AWARENESS that is being spread about autism, cancer, whatever...because I'm tired of people not getting how horrible this damned disorder is...because THIS is the reality for families like mine, I just have to tell you how it really is.
This is not pleasant. I have not spared the gritty language.
A few mornings ago, I went in to get Stephen up for the day. I'm used to stripping his bed. I've got it down to a science. Three waterproof pads to protect the clean layers underneath. Switch out bedspreads. Spot clean carpet, use Bissell spot-lifter occasionally. Spray Febreze if needed... But on this particular morning, Stephen had diarrhea. My giant baby boy stood in the middle of his room, covered in his own shit, and I watched helplessly as it POURED out of his shorts, down his legs, and puddled - yes, PUDDLED - on the carpet. (I've since started putting waterproof mats on the floor beside his bed at night). After years of cleaning up messes, I gagged as I tried to figure out where to even start.
My child, his mind stolen, his awareness minimal, his behaviors so often uncontrollable, stood there, covered in this mess...smiling at me. Looking at me trustingly. My mind RAGED. I'm so fucking angry that THIS is his life. It's my life. It's David's and Kerry's lives. And it is just so incredibly hard and sad and messy and IMPOSSIBLE.
Stephen also overflows his pull-up when he pees - not every time, but almost every day. I can be standing at the stove cooking and suddenly he's beside me, jabbering away as he does. Then..."Sqqqqqueeeakkkkk," his foot slips across the floor, which has suddenly become Lake Pee-pee. Gallons of liquid spreading across the floor. So then you have to strip him, grab towels (kept handy these days) and clean the floor and him. Sigh. More laundry.
To the people blithely spreading AWARENESS; to the people sporting those dandy puzzle piece magnets on their cars; to the parents of kids with HFA or Aspergers: I know unequivocally that you have your own set of challenges. I've said it before - I understand you don't necessarily want your child cured and that you're very happy "spreading" awareness and so forth. But please do not lump my kid in with your wholehearted acceptance of the quirks and irritations that you deal with... I wish Stephen would get better. He's NOT better, he hasn't improved in over a decade in many ways...not really. He is a helpless toddler in the body of a man.
Right now, today, things are back to a bit of an even keel. The last few days, the med level seems to have stabilized at it's "old" point and we have our laughing, silly, hugging-and-kissing man-child back. But the possibility of the middle of the night upset stomachs, the unavoidable changes that will result in hitting, the frustration of being in a world he can't possibly really comprehend - those things lurk under the surface. Always. It takes the rest of our family propping each other up to feel just sort of okay. Having David and Kerry helps - we all share the trauma, but we do laugh a lot too. Have to. This life is not what anyone wanted and we would all trade it in if we could. But we can't.
Please, though, the next time some perfectly coiffed "news" anchor blathers on about a kid with autism going to college or nailing the Star-Spangled Banner at a hockey game, remember: they can CALL that autism, but THIS is what autism is really like.
But here goes: the other morning on my commute to work, I looked at the four cars immediately surrounding me as we zipped along the interstate, and each of the four had an "AUTISM AWARENESS" sticker or magnet or car tag. And I thought to myself how UNaware so many people are about what's really true about autism.
So, I find myself wanting to talk about some things. They are not happy things, or lovely stories, or charming anecdotes. Not this time. These are ugly and sad and unpleasant things. If you are easily offended by profanity or have a weak stomach, then please stop reading now. I'm not a "curser" by nature, unless the situation warrants it...
The 12 year battle against autism rages on. RAGE being the optimal word. Stephen had a fairly decent summer at a new school. Certainly his behavior was much, much improved compared to last summer's hell. There have been transition issues, of course, and having our school system change from a county system (with county-wide supports for special needs) to a city system that was rushed into existence with many "bugs" to work out (and I'm being very kind in this description) hasn't been an ideal situation for Stephen. I can only hope things will keep improving.
As a family we are in a perpetual state of uneasy alert, afraid of tripping the hair-trigger of Stephen's fragile equanimity. We still sneak and devise ways to avoid awakening the obsessive-compulsive beast. It works, sometimes. When it doesn't, it is a nightmare of screaming, hitting, and mental torture. Watching this baby-faced boy in obvious torment tears at your soul, at the fabric of your spirit, and those wounds fester and resist healing. It sucks and makes you want to run into the night until your legs won't carry you any further. We followed our doctor's advice to try to increase medicine dosages to a "therapeutic" level to treat OCD. The increase caused him to be erratic and the SIB increased. So back down we go...
With puberty comes some other challenges. Diapering challenges. No, he's still not potty trained. Not even close. Doesn't seem to have a clue. So, we spend thousands every year on supplies. His bed sheets are stained though they are washed and washed and rinsed and rinsed. His carpet has stains. It is HARD to clean him up now that things have changed in his pubic area. It SUCKS.
Because I have grown so very weary of all the AWARENESS that is being spread about autism, cancer, whatever...because I'm tired of people not getting how horrible this damned disorder is...because THIS is the reality for families like mine, I just have to tell you how it really is.
This is not pleasant. I have not spared the gritty language.
A few mornings ago, I went in to get Stephen up for the day. I'm used to stripping his bed. I've got it down to a science. Three waterproof pads to protect the clean layers underneath. Switch out bedspreads. Spot clean carpet, use Bissell spot-lifter occasionally. Spray Febreze if needed... But on this particular morning, Stephen had diarrhea. My giant baby boy stood in the middle of his room, covered in his own shit, and I watched helplessly as it POURED out of his shorts, down his legs, and puddled - yes, PUDDLED - on the carpet. (I've since started putting waterproof mats on the floor beside his bed at night). After years of cleaning up messes, I gagged as I tried to figure out where to even start.
My child, his mind stolen, his awareness minimal, his behaviors so often uncontrollable, stood there, covered in this mess...smiling at me. Looking at me trustingly. My mind RAGED. I'm so fucking angry that THIS is his life. It's my life. It's David's and Kerry's lives. And it is just so incredibly hard and sad and messy and IMPOSSIBLE.
Stephen also overflows his pull-up when he pees - not every time, but almost every day. I can be standing at the stove cooking and suddenly he's beside me, jabbering away as he does. Then..."Sqqqqqueeeakkkkk," his foot slips across the floor, which has suddenly become Lake Pee-pee. Gallons of liquid spreading across the floor. So then you have to strip him, grab towels (kept handy these days) and clean the floor and him. Sigh. More laundry.
To the people blithely spreading AWARENESS; to the people sporting those dandy puzzle piece magnets on their cars; to the parents of kids with HFA or Aspergers: I know unequivocally that you have your own set of challenges. I've said it before - I understand you don't necessarily want your child cured and that you're very happy "spreading" awareness and so forth. But please do not lump my kid in with your wholehearted acceptance of the quirks and irritations that you deal with... I wish Stephen would get better. He's NOT better, he hasn't improved in over a decade in many ways...not really. He is a helpless toddler in the body of a man.
Right now, today, things are back to a bit of an even keel. The last few days, the med level seems to have stabilized at it's "old" point and we have our laughing, silly, hugging-and-kissing man-child back. But the possibility of the middle of the night upset stomachs, the unavoidable changes that will result in hitting, the frustration of being in a world he can't possibly really comprehend - those things lurk under the surface. Always. It takes the rest of our family propping each other up to feel just sort of okay. Having David and Kerry helps - we all share the trauma, but we do laugh a lot too. Have to. This life is not what anyone wanted and we would all trade it in if we could. But we can't.
Please, though, the next time some perfectly coiffed "news" anchor blathers on about a kid with autism going to college or nailing the Star-Spangled Banner at a hockey game, remember: they can CALL that autism, but THIS is what autism is really like.
Monday, February 17, 2014
Regrets
It's been so long. Too long?
I routinely get emails telling me that there's a new blog comment waiting to be moderated. Invariably these are spam comments hawking designer purses or something. I always check, though, just in case. And this past Saturday, there was a real comment from a reader named Karen, who remembered Stephen's birthday. Her comment read:
"Happy 14th Birthday, Stephen!
I remembered this post from last year and have missed your posts as of late. Thank you for all that you have shared over the years ... it really helps us moms out here going through similar circumstances.
I hope all is well in your world :)"
Karen, if you're reading this, please know that I am so touched that you remembered Stephen's birthday, and that you posted this comment.
I didn't put up a blog post on Stephen's birthday this year. In fact, other than the "draft" post I've been tinkering with since early December, I haven't posted since July 2013. And I regret that.
I mentioned this to David and he said, "Well, maybe you don't have anything to say," and at first I was inclined to agree. But that's not totally true. The problem is, I have the SAME things to say, over and over, and I feel like people get sick of reading as I pour out my sorrow and woes and so forth... And I get tired of having those thoughts. And I feel guilty for having them, and guilty that I'm not somehow making more of my life than I am.
Mostly I'm just tired.
We didn't celebrate Stephen's 14th birthday. It passed like any other Saturday, and that's for the best - no sensory overstimulation, no confusion over gifts that appear for seemingly no reason, no party. Stephen is much the same, just taller and bigger...still a baby or toddler in almost every way - same RAGING separation anxiety, still riddled with OCD and all that entails.
I recently ordered a laptop for myself and hope to get back to writing in some fashion, whether it's on here or elsewhere. I do appreciate the people who have read this blog and reached out - it truly has meant so much to me.
And maybe I'll post again soon...
I routinely get emails telling me that there's a new blog comment waiting to be moderated. Invariably these are spam comments hawking designer purses or something. I always check, though, just in case. And this past Saturday, there was a real comment from a reader named Karen, who remembered Stephen's birthday. Her comment read:
"Happy 14th Birthday, Stephen!
I remembered this post from last year and have missed your posts as of late. Thank you for all that you have shared over the years ... it really helps us moms out here going through similar circumstances.
I hope all is well in your world :)"
Karen, if you're reading this, please know that I am so touched that you remembered Stephen's birthday, and that you posted this comment.
I didn't put up a blog post on Stephen's birthday this year. In fact, other than the "draft" post I've been tinkering with since early December, I haven't posted since July 2013. And I regret that.
I mentioned this to David and he said, "Well, maybe you don't have anything to say," and at first I was inclined to agree. But that's not totally true. The problem is, I have the SAME things to say, over and over, and I feel like people get sick of reading as I pour out my sorrow and woes and so forth... And I get tired of having those thoughts. And I feel guilty for having them, and guilty that I'm not somehow making more of my life than I am.
Mostly I'm just tired.
We didn't celebrate Stephen's 14th birthday. It passed like any other Saturday, and that's for the best - no sensory overstimulation, no confusion over gifts that appear for seemingly no reason, no party. Stephen is much the same, just taller and bigger...still a baby or toddler in almost every way - same RAGING separation anxiety, still riddled with OCD and all that entails.
I recently ordered a laptop for myself and hope to get back to writing in some fashion, whether it's on here or elsewhere. I do appreciate the people who have read this blog and reached out - it truly has meant so much to me.
And maybe I'll post again soon...
Wednesday, July 17, 2013
Accepting uncertainty
Many times over the last year I’ve decided that my blogging days are over. In typical fashion, though, I have a hard time admitting that I can’t or won’t do something.
I spent a half hour recently going back to the beginning, to my first entries in 2007 and following. What struck me most intensely was the anguish I so often poured out, the trials and tribulations, the discouragement and frustration…and, even though the last six months have been without a doubt the most challenging of Stephen’s life, seeing those old entries so full of pain reminded me that we’ve been through many valleys already.
One entry from the past was titled something like “The 4’11” Tyrant.” Yet, the way Stephen acts now, in the grip of puberty and hormones and god knows what else, I feel ridiculous for referring to him as a tyrant all those years ago. Talk about a perspective shift… Of course, he’s no longer 4’11”. He’s very nearly my height, 5’7”, and his weight has steadily climbed upward, thanks to the side effects of Risperdal. We continue to rely on that drug to keep him calm – at least most of the time – and while we try our best to keep his servings small, he is a carb-fiend and good luck to anyone who thinks they can improve his diet. We’ve tried. He was stubborn and set in his ways years ago. Now multiply it times 100 and you’re getting close to what we deal with now.
The sudden onset of fierce OCD right around his 13th birthday has shaken our already fragile world to the foundation. We have been to 4 doctors, at last count, and are on our second try with meds to treat OCD. Of course, the meds must be started slowly, be allowed to build up, slowly increased to “therapeutic” levels, and THEN, you hope they work. If not, then you have to slowly decrease, try the next suggested medicine, and start all over again. Meanwhile the tantrums continue. The head-hitting continues. Not every day, no. Less frequently than February/March? Maybe. But the idea of them, the possibility of these horrible fits, lurks under the surface constantly.
We are practically levitating, we are so carefully walking on eggshells. Sneaking in and out of the house whenever possible, to avoid the separation anxiety. Sneaking Kerry downstairs to drum when Stephen isn’t looking, closing Kerry’s bedroom door and pretending he’s in there – even though the drums are clearly heard – somehow keeps Stephen from screaming and demanding “IS KERRY????!!!!????” and hitting himself.
And underneath and beside and entangled with it all are my inborn neuroses. I was raised by a nervous mother and I learned my lessons well. Even when there is peace, my heart races, trying to prepare for the next bout. I worry all the time. ALL. THE. TIME. I worry about things that may not happen. BUT WHAT IF THEY DO? Surely my fixation on future possibilities will ease the shock when/if they happen! It’s just smart planning to ruin your life and the lives of those around you with permanent nervousness and tension.
Lately I’ve been facing the reality of what I’m doing to myself and to my family with this…STUFF. It is incredibly hard for me to even begin to contemplate letting go of my worry/anxiety combo. I have such a twisted and bizarre sense of loyalty to it. Somehow for years I’ve justified maintaining this mentality – pointing to the admittedly few times things have really gone badly as proof that I was right to worry all along. Over the last few months I’ve started to see clearly how wrong that viewpoint is, and what a waste of precious resources it is to try to exist like this.
Yesterday, I was fretting and stewing about how best to get Kerry out of the house for his first marching band practice, doing my best to foresee every possible issue or problem, how I would handle it, what I would do if the first thing I tried didn’t work, carrying that thought all the way through to the conclusion I typically jump to in my mind, which is:
If he won’t calm down, I give him med A. Failing that, med B. Failing THAT, call the doctor. If that doesn’t work, I have to take him to the hospital. Oh god, how would I ever leave my helpless man-child in the care of strangers? What if they won’t let him keep his iPad? How many diapers do I take? Would they restrain him? What about work tomorrow? What if THEY can’t help him at the hospital????
As humiliating as it is to admit, THIS is the madness that shoots through my brain like an electric current in the space of mere seconds. This lunacy saps my energy, takes away my appetite, shuts down my common sense, and robs me of the moments of happiness that still exist…not to mention the very obvious effects on those around me.
It has to stop.
Life is hard enough, taken at face value, without the addition of these mental meanderings…honestly, as I read it again it might well be something someone would babble in a fever delirium.
People like me think that worry is helpful. That anxiety serves a purpose, that we can somehow foresee the future and prepare…it’s all nonsense. While a certain amount of awareness of outcomes is smart and practical, it’s a far cry from the storm in my head.
I’ve been this way as long as I can remember, and somehow have muddled through up to this point. Maybe it’s my age, maybe it’s the sharp increase in the difficulties we are experiencing, maybe the clear impact it’s having on me, my health, my family - who knows why I’m forced to face the absolute futility in continuing this way of “life” now, but it’s happening. I am using mental images of the color red, of stop signs, etc. to try to halt my damaging thoughts, to try to throw off the worries when they come creeping, or sometimes RACING in. I’m working hard to stay in the moment, to be mindful of THIS moment…and this one, and the next, letting things unfold as gently as possible. To allow myself to be aware of the future only in a general sense but refusing (often over and over and over) to start sending tendrils of thought snaking their way into the uncertain future. Part of my task is to radically accept uncertainty – because the alternative is simply impossible.
I’ve always worried about the uncertainty of what is to come, always allowing my thoughts to slide into negativity, sure if I expected the worst then I’d be prepared, or at the least I’d be happy if A BAD, HORRIBLE, DEVASTATING THING didn’t happen. Now, I must accept the pure, unvarnished nature of life’s uncertainties, and try to believe two things: 1) Things just might be okay in the future and 2) If they’re not, I’m not alone, and, along with the people I love, I will survive.