I accept that my autistic son eats unusual things. I accept that I let him eat stuff that is not recommended for human consumption. And I am delighted that he never has tummy troubles. But I must say that he eats edible food items as well. In fact, he eats anything I put in front of him except broccoli and green beans ( he throws those particular veggies at the ceiling). As I am making dinner he will often scout out what is in the sink, like the butts of tomatoes or onions, soggy bread crusts, anything I have dumped into the garbage disposal in an attempt to dispose of it. He feasts on stuff I want to get rid of. The boy has no shame.
Finally when dinner is ready ,an acceptable dinner for typical people, Tanner eats as if he has been through the desert with a horse with no name. And since using a fork only slows him down he scoops his food with his utensil of choice, his hand. The boy finds it easier to dump his dinner onto the flat surface of the counter and then shovel it into his face like a front loader pushing a load into an endless pit. He can eat a whole meal in five minutes. So as the rest of the family is barely beginning our evening feast the boy hands me his empty plate, meaning "more food".
So really, supper is.....the clean-up is monumental...small talk is impossible...it is just not a time to relax and discuss how our day went. Instead I wait for that golden moment after dinner, when everything is washed and put away, the sleepy meds have been given and Tanner is drowsy. Then I sit on the couch with a blanky and scratch Tanner's back until he is unconscious. Only then does the "how was your day" conversation take place.
Tuesday, October 29, 2013
Saturday, October 26, 2013
Eat It (As Long As It's Not Toxic)
When my autistic boy was a but a pup he didn't care about eating. He was a skinny little kid, like an al dente noodle, thin and floppy. But then at four years old he started eating kooky things. I remember him sitting in a pile of sand and putting a pinch of it into his mouth. The sand crunched in his teeth as he chewed. He didn't spit it out but tasted it as if it were an appetizer, cautious at first and then surprised at it's goodness. I realize that sand isn't part of a food group but it seems to be ok in moderation, just a little here and there. Every once in a while the boy feels the need to eat a bite of dirt as well. Last year while in the yard he picked up a plum sized dirt clod and took a good honest bite out of it, twice. Then he went about his day. In the early days school teachers learned not to give him crayons, chalk, candles or pencil erasers because he made a meal out of them. These items weren't just chewed on, he actually ate them like a rabbit eating a carrot. And no tummy trouble either, just colorful in his diaper.
Any kind of water will find it's way into Tanner's mouth as well; lake water, irrigation water, storm water, bath water, old water, pool water. He likes water. At first I was worried about the cleanliness of what he was drinking. But he NEVER got sick, and still never does. Of course I know it is gross to drink strange water, I am careful when I drink stuff, heck, I won't even drink out of the same cup as another person. Still I gave up trying to protect him from himself, he wouldn't have any fun if I kept him in sanitary conditions. If his gut isn't complaining then I suppose it's all good.
All I know is that all the candles in the house have bite marks and chunks are missing along their edges, as well as the Nerf footballs, and anything with a rubber handle. Be assured that he also receives healthy snacks as well and usually a fine dinner of meat and potatoes. For desert, if he's been a good boy, he might get a tangerine crayon.
Any kind of water will find it's way into Tanner's mouth as well; lake water, irrigation water, storm water, bath water, old water, pool water. He likes water. At first I was worried about the cleanliness of what he was drinking. But he NEVER got sick, and still never does. Of course I know it is gross to drink strange water, I am careful when I drink stuff, heck, I won't even drink out of the same cup as another person. Still I gave up trying to protect him from himself, he wouldn't have any fun if I kept him in sanitary conditions. If his gut isn't complaining then I suppose it's all good.
All I know is that all the candles in the house have bite marks and chunks are missing along their edges, as well as the Nerf footballs, and anything with a rubber handle. Be assured that he also receives healthy snacks as well and usually a fine dinner of meat and potatoes. For desert, if he's been a good boy, he might get a tangerine crayon.
Thursday, October 24, 2013
Lock Down
My home is such a beautiful prison. Every door is locked, every cupboard secure, every water faucet inaccessible. The convict here is a sneaky little devil and requires strict observation which realistically I can't give him. For some reason my autistic jailbird tends to open anything which is not locked for no apparent reason. He will open a cupboard, take out a cereal box, drop it on the floor and go onto the fridge, open the doors and leave. Next the water faucets go on because water comes out of them. Then the drawers are pulled open and the tape measures are taken out, but only the tape measures. Maybe he'll try the laundry room because it is fun to throw folded towels around and pull out wrapping paper. It is super sneaky to go into the jailor's bathroom and eat her candles. My prisoner is a lifer in his pretty prison and doesn't see the need for good behavior. See, if I don't keep a handle on the situation then I am apt to have a lot of cleaning up to do. Therefore I lock everything. Unless I forget which is often.
As the warden sometimes I find it infuriating to spend the day locking and unlocking things so I just lock myself outside and take a peek at my convict through the window from time to time just to make sure he is secure. He usually is. Really the best thing for Tanner is a TV and a remote control and alone time. Then he forgets his ritualistic cycle of opening stuff and enjoys what is in his own brain box.
As the warden sometimes I find it infuriating to spend the day locking and unlocking things so I just lock myself outside and take a peek at my convict through the window from time to time just to make sure he is secure. He usually is. Really the best thing for Tanner is a TV and a remote control and alone time. Then he forgets his ritualistic cycle of opening stuff and enjoys what is in his own brain box.
Sunday, October 20, 2013
Elopement
Studies show that kids with autism have a high rate of elopement. Huh... so does that mean that my boy has a good chance of running away to Las Vegas to get married without my knowledge? Golly wouldn't that be something! "Elopement" is the stupidest word ever used in the world of autism, almost as bad as "Bored Housewife". Every time I see that word I cringe and roll my eyes, I hate that word!
It's not so funny when elopement "happens" though. If I ever say that Tanner eloped last night I don't mean that he secretly ran off with a gal, I mean that he escaped home without me knowing. One minute he is here and the next minute he is down the street. Very distressing indeed!
My little sneaky one started wandering when he was five. He slowly got away by crawling over dirt and rocks and asphalt to get to a mud puddle at the end of the cul-de-sac. Even turning my back on him for ten minutes could result in his escape and many possible dangers. Later he grew bolder and actually opened the front door and hobbled to a neighbors yard where he started drinking out of their birdbath. This was when our neighborhood was new and this house in particular was, and is, not very "open". I got my first and only "keep a better watch on your kid" lecture from the lesbians next door. Thanks for the tolerance gals... whatever.
As soon as it became clear that "der sneak-meyster" was on the look-out to escape and see other people's TV sets , we drilled holes in all of our outside doors and put up hotel chains to keep them secure. This worked very well were it not for human error. If someone in the household forgot to chain a door then the boy was on the move. Except we wouldn't know he was gone until he was brought back by a well-meaning and smiling neighbor. Yes, after a couple of years, a few particular neighbors were used to the boy walking into their unlocked houses and commandeering their couch and TV. Sometimes they would find him sitting on their backyard trampoline or in their vehicle or in their garage. Oh the stories!
Anyhoo, total and complete diligence every hour of every day tended to be impossible when the wanderer is smarter than was credited. When it was learned that Tanner could lift the chains off the doors, then we used ribbons instead of the chains because the boy couldn't undo complicated knots. Again we encountered the almost debilitating problem of tying and untying knots all day. Someone, some time wouldn't tie a knot (just for a minute) and off Tanner would go on his "walkabouts".
The problem is that we don't know what the cub can do until he already does it. So great appreciation and relief goes out to all my neighbors who have been such good sports over the years. Without these wonderful and understanding people all about me I would have checked myself into the loony bin long ago. I hope that Tanner and I are a source of amusement and good-hearted talk at their dinner tables.
On a serious note though, there was one terrifying incident that happened one late, late night... I was driving home from work at 1:30 a.m.as I usually do. My heart jumped into my throat when I saw that the garage door was wide open, lights were on, and I knew that Tanner was long gone. In great hopes I searched the house, he was nowhere. I got on my daughter's bike and immediately, frantically pedaled to the neighbor's pond. My weak flashlight shone dimly in the pitch black and I tentatively called out his name, desperately praying that my light didn't fall on his face down body in the water. I was sick with fear. After a thorough search of the pond I continued down the road to the marshes where shallow water ran through tall weeds. While wading through the marsh out of my mind in desperation, car lights shown on me and a neighbor embraced me saying "we've got Tanner, he's on his way home"!
While I was searching for him, my son had wandered farther than he ever had. He rang the doorbell of a house in the neighborhood, walked right in, flipped on their lights and sat on their couch. These folks didn't know who this strange boy was but they knew he was "special". They took a picture of this boy and sent it to other neighbors who recognized him, then they found me wallowing in the marshes. I was reunited with the love of my life as he obliviously walked down the sidewalk in someone else's shoes and someone else's coat.
Have I said how much I love my neighbors? I can never say it enough.
It's not so funny when elopement "happens" though. If I ever say that Tanner eloped last night I don't mean that he secretly ran off with a gal, I mean that he escaped home without me knowing. One minute he is here and the next minute he is down the street. Very distressing indeed!
My little sneaky one started wandering when he was five. He slowly got away by crawling over dirt and rocks and asphalt to get to a mud puddle at the end of the cul-de-sac. Even turning my back on him for ten minutes could result in his escape and many possible dangers. Later he grew bolder and actually opened the front door and hobbled to a neighbors yard where he started drinking out of their birdbath. This was when our neighborhood was new and this house in particular was, and is, not very "open". I got my first and only "keep a better watch on your kid" lecture from the lesbians next door. Thanks for the tolerance gals... whatever.
As soon as it became clear that "der sneak-meyster" was on the look-out to escape and see other people's TV sets , we drilled holes in all of our outside doors and put up hotel chains to keep them secure. This worked very well were it not for human error. If someone in the household forgot to chain a door then the boy was on the move. Except we wouldn't know he was gone until he was brought back by a well-meaning and smiling neighbor. Yes, after a couple of years, a few particular neighbors were used to the boy walking into their unlocked houses and commandeering their couch and TV. Sometimes they would find him sitting on their backyard trampoline or in their vehicle or in their garage. Oh the stories!
Anyhoo, total and complete diligence every hour of every day tended to be impossible when the wanderer is smarter than was credited. When it was learned that Tanner could lift the chains off the doors, then we used ribbons instead of the chains because the boy couldn't undo complicated knots. Again we encountered the almost debilitating problem of tying and untying knots all day. Someone, some time wouldn't tie a knot (just for a minute) and off Tanner would go on his "walkabouts".
The problem is that we don't know what the cub can do until he already does it. So great appreciation and relief goes out to all my neighbors who have been such good sports over the years. Without these wonderful and understanding people all about me I would have checked myself into the loony bin long ago. I hope that Tanner and I are a source of amusement and good-hearted talk at their dinner tables.
On a serious note though, there was one terrifying incident that happened one late, late night... I was driving home from work at 1:30 a.m.as I usually do. My heart jumped into my throat when I saw that the garage door was wide open, lights were on, and I knew that Tanner was long gone. In great hopes I searched the house, he was nowhere. I got on my daughter's bike and immediately, frantically pedaled to the neighbor's pond. My weak flashlight shone dimly in the pitch black and I tentatively called out his name, desperately praying that my light didn't fall on his face down body in the water. I was sick with fear. After a thorough search of the pond I continued down the road to the marshes where shallow water ran through tall weeds. While wading through the marsh out of my mind in desperation, car lights shown on me and a neighbor embraced me saying "we've got Tanner, he's on his way home"!
While I was searching for him, my son had wandered farther than he ever had. He rang the doorbell of a house in the neighborhood, walked right in, flipped on their lights and sat on their couch. These folks didn't know who this strange boy was but they knew he was "special". They took a picture of this boy and sent it to other neighbors who recognized him, then they found me wallowing in the marshes. I was reunited with the love of my life as he obliviously walked down the sidewalk in someone else's shoes and someone else's coat.
Have I said how much I love my neighbors? I can never say it enough.
Friday, October 18, 2013
Ask For Help Sooner Rather Than Later
I am at this very moment watching my autistic son chew the foam off his Nerf protective case for his DS GameBoy thingy and patiently waiting for his nighty-night drugs to kick in. It is very loud right now because he is listening to classical music on the tuner, Christmas music on i-tunes, watching his plane crash on the Wii, jumping up and down and vocalizing happily because he is so happy to be alive! But I am peaceful. I am relaxed and comfortable because Tanner went to his Day Program today for six hours. If not for this "government handout" I would be crazy by now.
For the first twelve years I did it without help. In the very beginning, the first four years, life was manageable. I had a developmentally delayed son and soon a perfectly typical daughter which gave people the impression that I had twins. Both children took all my spare time but I honestly loved it. I had two cubs to feed, bathe, entertain and keep safe plus I had a part-time evening job and a husband who took up the slack. Being a mother is a joy and at that time I was proud that I was up to the challenge. Then Tanner's behavior started to change from being passive to being aggressive. He was pinching and biting and scratching and head banging and self destructing. He was restless and vocal and inconsolable.
From age four to eight I was in the dark about how to live my life. My only outlet was going to my job, an escape from a crazy child and a despondent husband. Somehow during these dark days, a prelude to blacker days, I was pointed in the direction of a clinic dedicated to neuro-behavioral issues. This is when psychotropic medications entered our lives...so many ineffective medications. At least there was a modicum of help in the sea of despair. We tried to get the kid's behavior under control through pharmacological help. A decision I would never regret even though I would encounter resistance from dad for decades. The clinic also referred us to various programs which could help alleviate some of the stress and responsibility of caring for a special needs child. At the time my husband was absolutely mortified to be the recipient of any "assistance", so I spent the next four years hanging by a thread. These four years were unspeakably difficult and I was unspeakably silent about my travails.
Gratefully I sent the boy off to school where the special ed. department did their best to integrate him into a system that really didn't want him. Daily I worried about his impact on others; would he hurt someone, would he disrupt to much, did the teachers care for him? Then when he got home I worried about the state of our home; would his sibling be damaged, would the marriage survive, would he be safe as I slept. I needed help regardless of my husbands denial.
Since my desperation was allowed to fester for years I really couldn't wait much longer for relief, so I wrote a letter to the DSPD coordinator. I honestly articulated my desperation. There were three key issues which got me immediate services. #1) I fear for the safety of my daughter ( the boy routinely attacked her) #2) I fear for the safety of my son ( I might hurt him) #3)I fear for the security of my marriage ( never mind). All were true. I swallowed my pride and admitted that I had lost control of the basics of survival. My family was in danger.
The point is that I didn't have let things get so bad. I should have had the sense to accept help when it was offered. I should have trusted my instincts and not have been controlled by my husband's pride. Now I can say that my boy is happily involved in an educational setting dedicated to kids with disabilities. He is overwhelmed with joy when he goes to a "government sponsored" after school program three times a week. And I am happy to go to a movie on a night that I don't work thanks to Respite Care (another government funded program for caretakers of special needs kids). All in all, this help has never been so deserved and so appreciated and I have never been so "ok".
DO THESE THINGS NOW:
1) love your autistic kid so much that you accept help from the government despite your belief system. ie. respite, community outreach, after school, summer programs etc. ALSO don't be afraid of medication ( if he sleeps due to meds then you sleep too, win-win)
2) love your unaffected kid so much that you dedicate a special day every week just for her (by using respite care)
3) love your husband so much that you don't allow him to make uninformed decisions which can ultimately ruin your relationship due to unnecessary hardship.
4) Your autistic kid can be an absolute joy to you if you give up your pride and seek to "spread this joy" to other qualified individuals. By the way, you are not the only one that will love your quirky, funny, unique kid.
NEXT UP: Elopement...(I don't think this means what you think it means)
For the first twelve years I did it without help. In the very beginning, the first four years, life was manageable. I had a developmentally delayed son and soon a perfectly typical daughter which gave people the impression that I had twins. Both children took all my spare time but I honestly loved it. I had two cubs to feed, bathe, entertain and keep safe plus I had a part-time evening job and a husband who took up the slack. Being a mother is a joy and at that time I was proud that I was up to the challenge. Then Tanner's behavior started to change from being passive to being aggressive. He was pinching and biting and scratching and head banging and self destructing. He was restless and vocal and inconsolable.
From age four to eight I was in the dark about how to live my life. My only outlet was going to my job, an escape from a crazy child and a despondent husband. Somehow during these dark days, a prelude to blacker days, I was pointed in the direction of a clinic dedicated to neuro-behavioral issues. This is when psychotropic medications entered our lives...so many ineffective medications. At least there was a modicum of help in the sea of despair. We tried to get the kid's behavior under control through pharmacological help. A decision I would never regret even though I would encounter resistance from dad for decades. The clinic also referred us to various programs which could help alleviate some of the stress and responsibility of caring for a special needs child. At the time my husband was absolutely mortified to be the recipient of any "assistance", so I spent the next four years hanging by a thread. These four years were unspeakably difficult and I was unspeakably silent about my travails.
Gratefully I sent the boy off to school where the special ed. department did their best to integrate him into a system that really didn't want him. Daily I worried about his impact on others; would he hurt someone, would he disrupt to much, did the teachers care for him? Then when he got home I worried about the state of our home; would his sibling be damaged, would the marriage survive, would he be safe as I slept. I needed help regardless of my husbands denial.
Since my desperation was allowed to fester for years I really couldn't wait much longer for relief, so I wrote a letter to the DSPD coordinator. I honestly articulated my desperation. There were three key issues which got me immediate services. #1) I fear for the safety of my daughter ( the boy routinely attacked her) #2) I fear for the safety of my son ( I might hurt him) #3)I fear for the security of my marriage ( never mind). All were true. I swallowed my pride and admitted that I had lost control of the basics of survival. My family was in danger.
The point is that I didn't have let things get so bad. I should have had the sense to accept help when it was offered. I should have trusted my instincts and not have been controlled by my husband's pride. Now I can say that my boy is happily involved in an educational setting dedicated to kids with disabilities. He is overwhelmed with joy when he goes to a "government sponsored" after school program three times a week. And I am happy to go to a movie on a night that I don't work thanks to Respite Care (another government funded program for caretakers of special needs kids). All in all, this help has never been so deserved and so appreciated and I have never been so "ok".
DO THESE THINGS NOW:
1) love your autistic kid so much that you accept help from the government despite your belief system. ie. respite, community outreach, after school, summer programs etc. ALSO don't be afraid of medication ( if he sleeps due to meds then you sleep too, win-win)
2) love your unaffected kid so much that you dedicate a special day every week just for her (by using respite care)
3) love your husband so much that you don't allow him to make uninformed decisions which can ultimately ruin your relationship due to unnecessary hardship.
4) Your autistic kid can be an absolute joy to you if you give up your pride and seek to "spread this joy" to other qualified individuals. By the way, you are not the only one that will love your quirky, funny, unique kid.
NEXT UP: Elopement...(I don't think this means what you think it means)
Tuesday, October 15, 2013
If Only...
I know this one guy who lived with regret for many years. He had one son and that son had a bad case of autism. This father had grown up in a peaceful and rational home where his family members were productive and content, where each member thrived and had a talent to share. In his world, family members were above average in intellect and ability. And nobody had problems. So when this guy discovered that his progeny didn't fit the mold that he was accustomed to he didn't know what to do. He wanted to be a good father and insisted that his challenged son be familiar with all that is good in the world. This father wanted his son to enjoy the things that he enjoyed like travel, sports and family connection. He felt a penetrating guilt and disappointment when the boy didn't react like a typical kid. Sometimes this guy tried to hard to include his son in all things and mostly there was sorrow and bewilderment when these events went awry.It took a long time for him to realize his son would never go golfing or play a game of baseball or drive a car. It was painful for this man to look at the abilities of typical kids and realize that his only son was lost.
I can't say that he felt any better when he finally accepted the fact that his autistic son was not a part of the world. After coming to terms with living in an altered reality he started making adjustments and discovered that this strange, little creature of his had a different sort of ability. This boy had the unique ability to make a typical life more spicy. This boy had the ability to make his father want to be a better man. This boy could enrich and challenge his life in ways that were never expected. Every day and every moment with this boy was a wonder.
The key to receiving the most benefit from caring for an autistic child is to stop pretending that his world is the same as your world. It is not even close. Instead I choose to get a kick out of everything he does. I get a kick out of watching him belly laugh over the same scene of The Simpsons (which the boy watches over..and..over..and over...slow-mo, speed forward, rewind..watch again, then in Spanish). I get a kick out of how he spreads his food all over the counter before he eats it. I get a kick out of watching him splash in the bathtub.And most of all I love that he will lay his head on my lap as he goes to sleep.
NEXT UP: Accept Help
I can't say that he felt any better when he finally accepted the fact that his autistic son was not a part of the world. After coming to terms with living in an altered reality he started making adjustments and discovered that this strange, little creature of his had a different sort of ability. This boy had the unique ability to make a typical life more spicy. This boy had the ability to make his father want to be a better man. This boy could enrich and challenge his life in ways that were never expected. Every day and every moment with this boy was a wonder.
The key to receiving the most benefit from caring for an autistic child is to stop pretending that his world is the same as your world. It is not even close. Instead I choose to get a kick out of everything he does. I get a kick out of watching him belly laugh over the same scene of The Simpsons (which the boy watches over..and..over..and over...slow-mo, speed forward, rewind..watch again, then in Spanish). I get a kick out of how he spreads his food all over the counter before he eats it. I get a kick out of watching him splash in the bathtub.And most of all I love that he will lay his head on my lap as he goes to sleep.
NEXT UP: Accept Help
Sunday, October 13, 2013
Don't Pretend That Your Life Is Normal
I remember when I accepted that my son had issues, then I remember when I accepted that he would NEVER be normal. These were two different stages of my life. For the first four years I tried to change him and fostered the illusion that if I "therapize" him then he will catch up and be a normal boy. Early on, he was a perfect toddler because he didn't toddle and didn't whine. I took him on family vacations to Utah's National Parks, I took him to Mexico, Hawaii,and Disney. When he was small he was manageable, he had little tantrums that people understood.
Later there came a time when he outgrew his cuteness. I will always remember the trip to Cancun. Tanner was four years old. We were on a plane and he had a super-duper meltdown because we had to shut down the DVD player upon landing. He screamed and screamed. People were staring as if they were witnessing a murder. Not one person had the class to look sympathetic. When the plane touched down we quickly whisked Tanner away in his stroller. Our harried and devastated appearance touched an airport employee's sense of compassion and he saved us. He led the way through customs and baggage retrieval and saw us quickly on our way. I will never forget him.The first truly good soul and, to this date, the only good "public" soul I have encountered in my world. Needless to say, the anticipation of the return trip ruined my vacation.
The time had come when denial could serve me no longer. My kid was not only different, he was shockingly different. I learned that ordinary people can't deal with unordinary moments. Ordinary people are self-centered and terrified of things that they are not familiar with.I also learned that my cub was just as happy at home, with his things just the way they are. He didn't care about traveling to new and beautiful places. He didn't care about the turquoise ocean and the white sand and the sunsets. The vacation was all about me and my insistence that my family was normal. But it's not normal and I found that out the only way I could, the hard way.
NEXT UP: More Reasons to Stop Pretending
Later there came a time when he outgrew his cuteness. I will always remember the trip to Cancun. Tanner was four years old. We were on a plane and he had a super-duper meltdown because we had to shut down the DVD player upon landing. He screamed and screamed. People were staring as if they were witnessing a murder. Not one person had the class to look sympathetic. When the plane touched down we quickly whisked Tanner away in his stroller. Our harried and devastated appearance touched an airport employee's sense of compassion and he saved us. He led the way through customs and baggage retrieval and saw us quickly on our way. I will never forget him.The first truly good soul and, to this date, the only good "public" soul I have encountered in my world. Needless to say, the anticipation of the return trip ruined my vacation.
The time had come when denial could serve me no longer. My kid was not only different, he was shockingly different. I learned that ordinary people can't deal with unordinary moments. Ordinary people are self-centered and terrified of things that they are not familiar with.I also learned that my cub was just as happy at home, with his things just the way they are. He didn't care about traveling to new and beautiful places. He didn't care about the turquoise ocean and the white sand and the sunsets. The vacation was all about me and my insistence that my family was normal. But it's not normal and I found that out the only way I could, the hard way.
NEXT UP: More Reasons to Stop Pretending
Friday, October 11, 2013
Don't Change Your Kid
Autism didn't just sneak up on me, I could see it coming for miles. Eventually it is just a matter of acceptance. From the very beginning there was something not quite right. My baby was missing the train. I waved bye-bye to each of his milestones. By his four month check-up the pediatrician dropped the "developmental delay" word on me and a "let's wait and see" piece of candy which only fed my denial.. So I waited and didn't see. I remember placating myself with sayings like, "he is just a lazy baby, he'll catch up". At his six month check-up my world blew apart, all those new words and specialists and tests and appointments. Neurology told me my boy had neurological issues. Duh. Gastroenterology told me my boy didn't have the muscle tone to push his poop out which explained his constipation issues. Thanks.Genetics said that his chromosome test was normal. Great. Orthopedics gave me the word "hypotonic" or low muscle tone. Right. Next would come the therapies; Physical Therapy, Occupational Therapy, Speech Therapy, Head Start.
Everybody wanted Tanner to get better and better at things he couldn't do.All these exercises and therapy sessions were just things to keep me busy and hopeful. Looking back, none of these "extras" did a thing for my son's development. He was keeping track of his progress with his own developmental clock. When he was strong enough, he rolled over ( 5 months), when the time was right for him he sat on his own, (10 months). When the stars were aligned in his world he crawled (24 months). When his body was ready he walked, (5 years old). Recently, after years of building muscle strength and coordination he decided it was time to run (awkwardly) and jump (straight up and straight down). He is 15 years old.
At first I tried to make my boy become normal.I tried to change his destiny through manipulating his natural ability. Looking back I should have enjoyed every moment of his development without the expectations that Therapy forced upon me. I should have let the progress happen naturally and enjoyed my little pup at the stage he was in at the moment.
So I did the mostest when I could have done the leastest (not my only crime in this journey).The point is that I can't change my son's development or his autism. If I try to speed things up or slow things down then I am the one that loses. Alpha moms don't like to lose.
***note: behavior is something else entirely***
NEXT UP: Don't Pretend
Everybody wanted Tanner to get better and better at things he couldn't do.All these exercises and therapy sessions were just things to keep me busy and hopeful. Looking back, none of these "extras" did a thing for my son's development. He was keeping track of his progress with his own developmental clock. When he was strong enough, he rolled over ( 5 months), when the time was right for him he sat on his own, (10 months). When the stars were aligned in his world he crawled (24 months). When his body was ready he walked, (5 years old). Recently, after years of building muscle strength and coordination he decided it was time to run (awkwardly) and jump (straight up and straight down). He is 15 years old.
At first I tried to make my boy become normal.I tried to change his destiny through manipulating his natural ability. Looking back I should have enjoyed every moment of his development without the expectations that Therapy forced upon me. I should have let the progress happen naturally and enjoyed my little pup at the stage he was in at the moment.
So I did the mostest when I could have done the leastest (not my only crime in this journey).The point is that I can't change my son's development or his autism. If I try to speed things up or slow things down then I am the one that loses. Alpha moms don't like to lose.
***note: behavior is something else entirely***
NEXT UP: Don't Pretend
Thursday, October 10, 2013
Learn Quickly
Remember the definition of INSANITY? You are insane if you do the same thing over and over again but expect different results. I have been insane at many stages of this autism roller coaster.All I know is that if the boy does something once (and gets something out of it) he will do it over and over again. Take the average household wall for example. The wall looks solid, heck I hang pictures on that wall, I hurt my shoulder when I bump in to that wall. In reality that wall is soft as butter to a crazy eyed kid in full bore lunatic mode. At first, when Tanner was but a 5 year old head banger, he would pit his frustrations against the carpet. But the carpet didn't fulfill his animal need for pain, nor did the arm of the couch or the mattress of a bed. In order to satisfy the demons in Tanner's head he had to feel some kind of penance through pain....but not to much pain....not enough to cause a blissful black-out. Concrete, brick, pavement caused excessive scalp damage and didn't feel quite right, but sheet rock had the right firmness and softness.
For TEN LONG AND GLORIOUS YEARS we patched sheet rock dents. Dents grew into intrusions which grew into holes which grew into craters (depending on the year and his subsequent strength). There was always a patch kit in the corner: tape, spackle, puddy knife, sandpaper, paint roller. I can't believe we did this for THAT long. The problem is that I knew the battering ram of Tanner's head would almost daily make a mark, it was almost an expectation. I thought he would stop. I was insane.
Maybe a lightning bolt stuck during the night but FINALLY I decided to change things. #1) The boy needs to bang his head...when things are insane in the membrane he has to have an outlet. #2) I can't change this boy. #3) I CAN change the wall...and I did. (Well, the Man did). The Man is the dad, husband and fixer of all that is broke, except Tanner.
The solution: 1/4" particle board. Scab it on, dress it with a nice crown, paint it and then you have a very hard surface which is impossible (so far) to penetrate. AND I got an unintended consequence of the good kind.... The lunatic no longer bangs his head on the walls because he can find no purchase. In other words, these wall don't dent and hurt a whole lot more than the other walls.
The moral of this story is that denial is a nuisance. If I had accepted my new normal in it's fullest I would have put indestructible walls up 9 years ago. Amen
NEXT UP: More Learning Stories
For TEN LONG AND GLORIOUS YEARS we patched sheet rock dents. Dents grew into intrusions which grew into holes which grew into craters (depending on the year and his subsequent strength). There was always a patch kit in the corner: tape, spackle, puddy knife, sandpaper, paint roller. I can't believe we did this for THAT long. The problem is that I knew the battering ram of Tanner's head would almost daily make a mark, it was almost an expectation. I thought he would stop. I was insane.
Maybe a lightning bolt stuck during the night but FINALLY I decided to change things. #1) The boy needs to bang his head...when things are insane in the membrane he has to have an outlet. #2) I can't change this boy. #3) I CAN change the wall...and I did. (Well, the Man did). The Man is the dad, husband and fixer of all that is broke, except Tanner.
The solution: 1/4" particle board. Scab it on, dress it with a nice crown, paint it and then you have a very hard surface which is impossible (so far) to penetrate. AND I got an unintended consequence of the good kind.... The lunatic no longer bangs his head on the walls because he can find no purchase. In other words, these wall don't dent and hurt a whole lot more than the other walls.
The moral of this story is that denial is a nuisance. If I had accepted my new normal in it's fullest I would have put indestructible walls up 9 years ago. Amen
NEXT UP: More Learning Stories
Wednesday, October 9, 2013
The Importance of Being The ALPHA
I started becoming the Alpha Dog in my relationship with Tanner around the same time he bit me for the first time. That first bite was deep and shocking. The boy was 4 years old and was being playful. I was carrying him from one room to another and he sunk his little fangs into my forearm. The pain scared me. Did he really just bite into my flesh as if I were a steak?
It took many, many years for me to lovingly dominate Tanner. Each year I drew a new red line regarding his behaviors and I never let him cross that red line. It was important that he knew I wouldn't give in out of convenience. It was essential that he had no question as to my limits. I offset my demands by giving him unlimited affection. Every time I put my foot down he would also get a hug and a tickle and a whisper in his ear.
I started out by denying him attention while making his dinner. This small step changed everything. The Rule: I will not help you, sit by you, be pulled by you or stop what I am doing if I am making your dinner. period. There were sooooo many times it would have been easier to give in and change the batteries for him or put in a DVD for him. At first he was relentless, coming to me dozens upon dozens of times, pulling me here, pushing me there. But I never relented and now the little vulture only circles once or twice.
My second step was to cease doing things I absolutely hate: like playing the Wii or letting the cub use MY fingers to push the buttons on HIS toys.I know this sounds like the perfect bonding moment between mother and son. But no, it only feeds his obsessions and drives me apoplectic. I won't do it. EVER. When he hands me the Wii controller with great hopes and mischieviesness I just give him a big hug and whisper sweet nothings into his ear and threaten to give him a titty twister and then he goes away. He tests me and I pass the test. He respects me but feels safe enough to try for a hug.
These two small limits set the stage for the management of more serious issues. Tanner is a persistent cute little pup when he is happy but when he looses his mind he is as dangerous as a rabid dog (except that I don't have to take rabies shots when he breaks the skin). Before my alpha attitude set in the kid was making mincemeat out of me. His blind rages involved anything and anyone within his grasp. How he used to hurt me! He could shred my arms and hands with his fingernails or leave big round bruises where he bit....and the pinching!! Unbelievable really. Such a small boy with such strong claws. His head he used as a battering ram, pounding through sheet rock walls, denting wooden tables and metal cars.True mayhem.
As my dominance became more dominant I refused to comfort him or defuse him when he had his crazy eyes on. I started to push back and take a stand. I raised my hackles and took a fighting stance and said viciously "You want a piece of me"? Then he started laughing because he realized that I had just used a quote from Toy Story. The first time this happened I "got" it! This kid needs me to be the Alpha Mom, stand my ground, and run the show. When I throw in a favorite verse from a favorite DVD his eyes go soft. I have used the Karate Kid eagle pose also, as if I'm going to kick the living daylights out of him. And recently I have raised a fly swatter, he knows what I do to flies.
So with the combination of reliable affection and unwavering limits, I have created a more manageable son.These days he doesn't blindly hurt me like he used to and he always knows I have a great Simpson's quote up my sleeve......
NEXT UP......."Learning, Always Learning"
It took many, many years for me to lovingly dominate Tanner. Each year I drew a new red line regarding his behaviors and I never let him cross that red line. It was important that he knew I wouldn't give in out of convenience. It was essential that he had no question as to my limits. I offset my demands by giving him unlimited affection. Every time I put my foot down he would also get a hug and a tickle and a whisper in his ear.
I started out by denying him attention while making his dinner. This small step changed everything. The Rule: I will not help you, sit by you, be pulled by you or stop what I am doing if I am making your dinner. period. There were sooooo many times it would have been easier to give in and change the batteries for him or put in a DVD for him. At first he was relentless, coming to me dozens upon dozens of times, pulling me here, pushing me there. But I never relented and now the little vulture only circles once or twice.
My second step was to cease doing things I absolutely hate: like playing the Wii or letting the cub use MY fingers to push the buttons on HIS toys.I know this sounds like the perfect bonding moment between mother and son. But no, it only feeds his obsessions and drives me apoplectic. I won't do it. EVER. When he hands me the Wii controller with great hopes and mischieviesness I just give him a big hug and whisper sweet nothings into his ear and threaten to give him a titty twister and then he goes away. He tests me and I pass the test. He respects me but feels safe enough to try for a hug.
These two small limits set the stage for the management of more serious issues. Tanner is a persistent cute little pup when he is happy but when he looses his mind he is as dangerous as a rabid dog (except that I don't have to take rabies shots when he breaks the skin). Before my alpha attitude set in the kid was making mincemeat out of me. His blind rages involved anything and anyone within his grasp. How he used to hurt me! He could shred my arms and hands with his fingernails or leave big round bruises where he bit....and the pinching!! Unbelievable really. Such a small boy with such strong claws. His head he used as a battering ram, pounding through sheet rock walls, denting wooden tables and metal cars.True mayhem.
As my dominance became more dominant I refused to comfort him or defuse him when he had his crazy eyes on. I started to push back and take a stand. I raised my hackles and took a fighting stance and said viciously "You want a piece of me"? Then he started laughing because he realized that I had just used a quote from Toy Story. The first time this happened I "got" it! This kid needs me to be the Alpha Mom, stand my ground, and run the show. When I throw in a favorite verse from a favorite DVD his eyes go soft. I have used the Karate Kid eagle pose also, as if I'm going to kick the living daylights out of him. And recently I have raised a fly swatter, he knows what I do to flies.
So with the combination of reliable affection and unwavering limits, I have created a more manageable son.These days he doesn't blindly hurt me like he used to and he always knows I have a great Simpson's quote up my sleeve......
NEXT UP......."Learning, Always Learning"
Tuesday, October 8, 2013
A Long Process
I wouldn't be writing unless I was comfortable in my own skin. It has only taken 46 years to be able to be confident and unapologetic about the way I live my life and the way I take care of my crazy child.And then to have the audacity to engrave my thoughts forever into written form. This process has been a long one. I'm not saying that I have reached enlightenment or anything but I don't expect things anymore. I don't control situations anymore. I don't control my son anymore.And the reason? Autism cannot be controlled. I just recently accepted this jewel of knowledge. My autistic kid is nutty and funny and I love him but he doesn't fit into a normal life. My life has to fit around him. Resentment and disappointment have long been abandoned yet I held onto control as if a happy life depended on it. Well, the more control I tried to exert over my boy's day to day life, the more crazy I became. Now I have decided to look back on the dumb and futile things I have done to make life normal. Learning from experience and giving up on control have lead me to contentment. I don't know what I would do without autism. I would be an empty vessel. Thank you Tanner for being such a bitter pill and yet the love of my life.
Subscribe to:
Posts (Atom)