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
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