Report cards came out today. My son Sam, who was in the exceptional children's program at the high school, was promoted to 10th grade. I remember 10th grade. I feel old.
The fact that Sam is rockin' a 3.00 GPA is not bad, either. I am proud of Sam. For a teen with autism, his grades are based on his IEP, not necessarily the standard course of study, although we do follow that.
If one looks at his grades, though, you might think, this kid could have done better. I tend to take his report cards with a grain of salt -- grading on the curve of autism so to speak. Yes, he is capable of so much more, but the reality is, he is learning disabled. Learning is hard for him. While some things come easy for typically developing teens, a certain level of grace needs to be extended for him. It's not that he is incapable -- it's just the way it is. "Normal" has a wide variety of normalcy.
Sam can construct the most elaborate Lego structures known to man -- yet, 4 x 4 eludes him. He can verbally tell me the most incredible dreams, but when it comes to writing them down -- words flee in his presence. He can learn all about Thomas Edison to the point that he can quote what Edison invented and when, but ask him to read a book about the man, and Sam freezes. He can learn so well while watching television programs on geography or history, but present a textbook....you get the idea.
The summer time presents a problem, in that Sam's memory literally goes on vacation when it comes to schoolwork. So instead of vegging out all the livelong day, he's working on math worksheets, boning up on multiplication facts, and reading books on subjects that interest him. For reading books on snakes, reptiles, robots and trains, as much as the topics are his special interests -- it's still reading.
Sam is excited about going into the 10th grade, and well he should. Just a few years ago one teacher said that by now, he'd be in a group home or an institution....and he's not. He's at home, learning, and doing well. Praise be to God.
Thursday, June 16, 2011
Tuesday, June 14, 2011
Managing
I have four children: Sam is 16-1/2 (the 1/2 is very important to him) and has autism, epilepsy, ADHD and spinal stenosis. Jacob, 13, has ADHD. My step-daughter Ellie (although I do not generally use the word "step") is 12 and has Type I diabetes. At 14 months old, baby Laura seems to be developmentally on track despite a small delay in walking.
Because of two things - the general number of children, and the number and variety of special needs, people generally avoid asking me to do things in church or the community, saying that I have "enough on my plate" or they don't see how I do it. Meaning, keep my sanity while rearing four children, all of whom have special needs (for a toddler has special needs just because of toddlerhood). While I appreciate their consideration, it takes away the choice I have in what I can and cannot do. For I love to teach Bible studies and have people over, but oftentimes people decline, saying that I have enough to do with my children. I would appreciate the chance to decline based on my own prayer life of asking God what HE wants me to do. For if He calls me to it, He will provide the grace and the way to do it.
People ask me all the time, "How do you do it?" -- meaning, how do you manage four children with special needs, a house, a husband (who himself has special needs although they're undiagnosed), writing, and leading a small group Bible study? The key word is "manage." Sam's autism requires us to have a certain level of structure that is good for all the kids -- and us. Autism requires us to have rules in our house that are not to be broken. This means we seem more strict than most parents, but it's not just because we want to be -- we have to be more strict, for safety's sake, sanity, and to keep all the ducks in an orderly row. Every day is different -- sometimes autism is less of an issue, sometimes it's a very autistic kind of day.
On these days, you learn to be flexible within the confines of the structure. If going to the park is on the plan but Sam is having a very austisic day, maybe going to the park with all the kids should not happen on that day. Life works when we acknowledge the disabilities, plan for them (for example - always have Sam's noon time pill with us, carry a site change for Ellie's insulin pump in the first aid kit that's always in the van, and have glucose tablets for when she goes low but we can't get to food immediately), and try to live as normal a life as possible.
One of the most important things to do to manage is to accept the disability. A long time ago I stopped fighting autism and accepted that my son has this dreaded disability which can manifest itself in so many forms. Yes, we fight autism -- by enrolling him in special camps and programs and treating him with medicines, and working with his teachers -- but life is so easier to manage when we accept autism. When we accept diabetes and ADHD and a zippy crawling toddler. To deny that we're different is to deny a huge part of our children and makes life a lot harder than it needs to be.
Some things that we do at home to manage are:
1. use a chore chart with the chores spelled out for each kid. They can't argue with a dry erase board [Although, I've found, they can erase a dry erase board -- which means I use wet erase markers that foil any preemptive strikes against said dry erase board].
2. Saturday nights, all the kids get their church clothes ready and have to show them to us. This eliminates Sunday morning fights and frantic attempts to find errant shoes.
3. Lists. Lists for grocery shopping, lists for daily activities, a to-do list for Sam for daily activities like chores, etc that he can strike off has he does what's on the list -- giving him a little power and satisfaction.
4. Preparation. We have to stay one step ahead of autism. That means looking ahead logistically and seeing trouble spots, and preparing Sam ahead of the trouble spots. If he is aware of things that can go wrong, he is better apt to prepare himself. In 2007 we took all the kids to Disneyworld. We knew Sam has a thing about trash -- straw wrappers, candy bar wrappers, etc -- so we showed him that Disney does not have "trash cans" they have "refuse cans." He thought it was very cool that in the Magic Kingdom the trash -- refuse cans -- are hooked up to a central vacuum system which quietly sucks all the refuse from the cans so there is no overflowing cans to upset the Disney experience. He would volunteer to gather up our remnants and put them in the refuse containers in the hope of experiencing the stuff being sucked away underneath the Magic Kingdom.
It may seem that we give autism too much credit and change all our lives around it. Maybe -- but it sure does help us to manage life and keep us at least a little sane. Having a child with a disability means quietly grieving on a daily basis for who that child could have been. Managing it this way, after acceptance, eliminates some of the grief and allows the child to be all that he can be despite the disability.
Because of two things - the general number of children, and the number and variety of special needs, people generally avoid asking me to do things in church or the community, saying that I have "enough on my plate" or they don't see how I do it. Meaning, keep my sanity while rearing four children, all of whom have special needs (for a toddler has special needs just because of toddlerhood). While I appreciate their consideration, it takes away the choice I have in what I can and cannot do. For I love to teach Bible studies and have people over, but oftentimes people decline, saying that I have enough to do with my children. I would appreciate the chance to decline based on my own prayer life of asking God what HE wants me to do. For if He calls me to it, He will provide the grace and the way to do it.
People ask me all the time, "How do you do it?" -- meaning, how do you manage four children with special needs, a house, a husband (who himself has special needs although they're undiagnosed), writing, and leading a small group Bible study? The key word is "manage." Sam's autism requires us to have a certain level of structure that is good for all the kids -- and us. Autism requires us to have rules in our house that are not to be broken. This means we seem more strict than most parents, but it's not just because we want to be -- we have to be more strict, for safety's sake, sanity, and to keep all the ducks in an orderly row. Every day is different -- sometimes autism is less of an issue, sometimes it's a very autistic kind of day.
On these days, you learn to be flexible within the confines of the structure. If going to the park is on the plan but Sam is having a very austisic day, maybe going to the park with all the kids should not happen on that day. Life works when we acknowledge the disabilities, plan for them (for example - always have Sam's noon time pill with us, carry a site change for Ellie's insulin pump in the first aid kit that's always in the van, and have glucose tablets for when she goes low but we can't get to food immediately), and try to live as normal a life as possible.
One of the most important things to do to manage is to accept the disability. A long time ago I stopped fighting autism and accepted that my son has this dreaded disability which can manifest itself in so many forms. Yes, we fight autism -- by enrolling him in special camps and programs and treating him with medicines, and working with his teachers -- but life is so easier to manage when we accept autism. When we accept diabetes and ADHD and a zippy crawling toddler. To deny that we're different is to deny a huge part of our children and makes life a lot harder than it needs to be.
Some things that we do at home to manage are:
1. use a chore chart with the chores spelled out for each kid. They can't argue with a dry erase board [Although, I've found, they can erase a dry erase board -- which means I use wet erase markers that foil any preemptive strikes against said dry erase board].
2. Saturday nights, all the kids get their church clothes ready and have to show them to us. This eliminates Sunday morning fights and frantic attempts to find errant shoes.
3. Lists. Lists for grocery shopping, lists for daily activities, a to-do list for Sam for daily activities like chores, etc that he can strike off has he does what's on the list -- giving him a little power and satisfaction.
4. Preparation. We have to stay one step ahead of autism. That means looking ahead logistically and seeing trouble spots, and preparing Sam ahead of the trouble spots. If he is aware of things that can go wrong, he is better apt to prepare himself. In 2007 we took all the kids to Disneyworld. We knew Sam has a thing about trash -- straw wrappers, candy bar wrappers, etc -- so we showed him that Disney does not have "trash cans" they have "refuse cans." He thought it was very cool that in the Magic Kingdom the trash -- refuse cans -- are hooked up to a central vacuum system which quietly sucks all the refuse from the cans so there is no overflowing cans to upset the Disney experience. He would volunteer to gather up our remnants and put them in the refuse containers in the hope of experiencing the stuff being sucked away underneath the Magic Kingdom.
It may seem that we give autism too much credit and change all our lives around it. Maybe -- but it sure does help us to manage life and keep us at least a little sane. Having a child with a disability means quietly grieving on a daily basis for who that child could have been. Managing it this way, after acceptance, eliminates some of the grief and allows the child to be all that he can be despite the disability.
Monday, June 13, 2011
Cleaning doorknobs
Summertime. The 3 oldest kids (16, 13, 12) are out of school and at home, and the 14-month old has plenty of distractions to keep her from taking a daily nap. On one hand, I know the kids like having a break from school; at the same time, I have to be even more creative in getting them to do anything except just lie around being tv spuds and computer hogs.
Chores in the summer are also hard. I am a firm believer that all kids need chores -- after all, chores build character and add responsibility, and they live here too (read: I'm their mom, not their maid). So this summer, I came up with an idea: Helping Sticks. I took jumbo-sized popsicle sticks and on the end of each one, wrote a different chore. Two chores per three teens times five days equal thirty sticks. I have everything on them: empty DW, load DW, vacuum living room, clean hall bath, weed garden, dust, sweep kitchen floor, mop kitchen floor, etc.
By about the 27th stick, I was losing momentum. Sure, I duplicated some chores, like vacuum, dishwasher loading/unloading, sweeping, mopping. I even made two "weed the garden" and two "water flowers in front." But by the 27th stick --- well, I was beginning to give out.
So, I looked at the person next to me: Sam. Sam was sitting beside me on the sofa as I did this. He was watching some tv show. So, during a commericial break, I muted the tv and told Sam what I was doing. And I prayed that he would understand, as sometimes, frankly, he doesn't. But this time I asked him, "Can you name me three chores?"
"Empty dishwasher," he said, for this was usually his chore.
"I have that one."
"Oh," he said. "Scoop cat box?"
"Ok, didn't have that one." I wrote that on a stick.
"Sweep front porch," he said, clicking the mute off. His program was back on.
I wrote down "sweep front porch" and put my thinking cap back on. Then, even though his program was on, Sam hit mute. "Clean doorknobs."
"What?" I said.
"Clean doorknobs with anti-germ wipes. Keeps the germs off the doorknobs and off our hands."
I had never thought of that. I wrote down the 30th chore and thanked Sam, who immediately went back to the tv show.
Last night was Sunday, and we gathered the family together. Using a days of the week dry erase board, I had each teen pick a stick, and I wrote down the chore beside the kids' names. One chore for the morning, one in the afternoon. The last Helper Stick Sam chose just happened to be "clean doorknobs."
I have to say he was excited about that. I don't think that it had anything to do with the helper stick or chore, but everything to do that I took his suggestion and actually used it. It was validation for him that, despite autism and everything else, he really is a viable and important part of this family, and he can contribute. I would have to say that's empowering for any person, disabled or not.
Chores in the summer are also hard. I am a firm believer that all kids need chores -- after all, chores build character and add responsibility, and they live here too (read: I'm their mom, not their maid). So this summer, I came up with an idea: Helping Sticks. I took jumbo-sized popsicle sticks and on the end of each one, wrote a different chore. Two chores per three teens times five days equal thirty sticks. I have everything on them: empty DW, load DW, vacuum living room, clean hall bath, weed garden, dust, sweep kitchen floor, mop kitchen floor, etc.
By about the 27th stick, I was losing momentum. Sure, I duplicated some chores, like vacuum, dishwasher loading/unloading, sweeping, mopping. I even made two "weed the garden" and two "water flowers in front." But by the 27th stick --- well, I was beginning to give out.
So, I looked at the person next to me: Sam. Sam was sitting beside me on the sofa as I did this. He was watching some tv show. So, during a commericial break, I muted the tv and told Sam what I was doing. And I prayed that he would understand, as sometimes, frankly, he doesn't. But this time I asked him, "Can you name me three chores?"
"Empty dishwasher," he said, for this was usually his chore.
"I have that one."
"Oh," he said. "Scoop cat box?"
"Ok, didn't have that one." I wrote that on a stick.
"Sweep front porch," he said, clicking the mute off. His program was back on.
I wrote down "sweep front porch" and put my thinking cap back on. Then, even though his program was on, Sam hit mute. "Clean doorknobs."
"What?" I said.
"Clean doorknobs with anti-germ wipes. Keeps the germs off the doorknobs and off our hands."
I had never thought of that. I wrote down the 30th chore and thanked Sam, who immediately went back to the tv show.
Last night was Sunday, and we gathered the family together. Using a days of the week dry erase board, I had each teen pick a stick, and I wrote down the chore beside the kids' names. One chore for the morning, one in the afternoon. The last Helper Stick Sam chose just happened to be "clean doorknobs."
I have to say he was excited about that. I don't think that it had anything to do with the helper stick or chore, but everything to do that I took his suggestion and actually used it. It was validation for him that, despite autism and everything else, he really is a viable and important part of this family, and he can contribute. I would have to say that's empowering for any person, disabled or not.
Thursday, June 9, 2011
School's Out! Kindof...
Sam's last day of ninth grade, for all intents and purposes, was this Tuesday. His brother's last day of school is tomorrow. While Sam has had remarkable achievements this year, he still can stand to hone his skills with multiplication tables, reading and writing.
One thing that is so hard for him to understand is that, as his mom, it is totally within my right to assign him homework. He feels that because 1. a paid teacher doesn't assign homework, and 2. it's summer time, that learning stops. Oh, he's in for a rude awakening.
We're going tomorrow morning to pick up some workbooks at the teacher's store. He will have a hand in choosing them, but he has to pick workbooks for math, reading, and reading comprehension, and writing while we're at it. Due to my work situation, I'm now a working stay-at-home mom, and can monitor this, so Sam can earn the privilege to watch tv, or play a computer game, or something by getting his academic stuff done in the morning while he's fresh.
I have often thought about homeschooling him. I even explored the home school options on the NC Department of Public Instruction website, and what I found there, is that no paperwork or official documentation has to be done in order to have a summer homeschool program. Mmmmm....looks like all the kids will be homeschooled this summer.
I have found that due to Sam's autism, he thrives on schedules, routines, and knowing what is going to happen in a day. That really stands for all kids, actually. So this summer, you'll see us at the pool, the bowling alley (thanks to free summer passes for bowling!), multiple doctor visits, therapeutic horseback riding -- but not before homework is done.
One thing that is so hard for him to understand is that, as his mom, it is totally within my right to assign him homework. He feels that because 1. a paid teacher doesn't assign homework, and 2. it's summer time, that learning stops. Oh, he's in for a rude awakening.
We're going tomorrow morning to pick up some workbooks at the teacher's store. He will have a hand in choosing them, but he has to pick workbooks for math, reading, and reading comprehension, and writing while we're at it. Due to my work situation, I'm now a working stay-at-home mom, and can monitor this, so Sam can earn the privilege to watch tv, or play a computer game, or something by getting his academic stuff done in the morning while he's fresh.
I have often thought about homeschooling him. I even explored the home school options on the NC Department of Public Instruction website, and what I found there, is that no paperwork or official documentation has to be done in order to have a summer homeschool program. Mmmmm....looks like all the kids will be homeschooled this summer.
I have found that due to Sam's autism, he thrives on schedules, routines, and knowing what is going to happen in a day. That really stands for all kids, actually. So this summer, you'll see us at the pool, the bowling alley (thanks to free summer passes for bowling!), multiple doctor visits, therapeutic horseback riding -- but not before homework is done.
Wednesday, April 20, 2011
Sam has a conversation
Sam, his baby sister Laura, and I went to an autism fair recently. There were vendors from many different service providers, educational institutions and support groups there. It was refreshing just to be around so many other parents who were facing the same thing I am: rearing a child with autism.
The best part of this fair was by far, the conversations Sam had with each exhibitor. He gained valuable social skills in an accepting environment. When we were leaving though, there was a lady with her teen son, who has autism, trying to get in their car to go home. They had parked on the street beside the sidewalk, like I did, and she was trying desperately to fold a stroller and put it in the trunk. She asked me as we were walking by for help and I stopped to help her. I don't know why it takes a rocket scientist to fold a stroller, but apparantly it took one to build it. So there you go.
While I was working on the stroller, the lady mentioned that she was babysitting her friend's baby and had to bring him and her son to the fair. I was in the same boat, kindof, but Laura is 12 months old and mine. She was in a stroller on the sidewalk, and I had asked Sam to please keep an eye on her as I manhandled the lady's stroller.
After a couple seconds, I realized that her son and Sam were chatting. They were both big strapping guys and about the same age. Her son said, "So. How old's your baby? This one," he pointed to the baby in the carseat, "is three months." He stood even taller. This was obviously a fact of pride to the young man.
Sam met his stance and said proudly, "My baby is twelve months."
The other boy's shoulders slumped, I noticed as I peeked while trying to fold her stroller. He then said, "Well then. Does your baby ride in the car facing the back, or the front."
Sam met his gaze. "In the front."
"Mmmph! Does your baby take a bottle?!"
Sam said, "Only at bedtime."
The kid had him, or so he thought. "Boy!....or girl?"
Sam said, "Girl."
"Oh man!" the kid said loudly. He looked desperate.
Sam said, "Does your baby....crawl?"
The kid looked at him in this weird game of Baby Poker. The stakes were high; Sam held all the cards. Sam stood proudly, raised an arm and pumped it: "I WIN." The stroller flattened.
The kid said with feeling, "Oh MAN!" and got in the car.
Sam looked at me and smiled. "I like having a baby sister now," he said.
The best part of this fair was by far, the conversations Sam had with each exhibitor. He gained valuable social skills in an accepting environment. When we were leaving though, there was a lady with her teen son, who has autism, trying to get in their car to go home. They had parked on the street beside the sidewalk, like I did, and she was trying desperately to fold a stroller and put it in the trunk. She asked me as we were walking by for help and I stopped to help her. I don't know why it takes a rocket scientist to fold a stroller, but apparantly it took one to build it. So there you go.
While I was working on the stroller, the lady mentioned that she was babysitting her friend's baby and had to bring him and her son to the fair. I was in the same boat, kindof, but Laura is 12 months old and mine. She was in a stroller on the sidewalk, and I had asked Sam to please keep an eye on her as I manhandled the lady's stroller.
After a couple seconds, I realized that her son and Sam were chatting. They were both big strapping guys and about the same age. Her son said, "So. How old's your baby? This one," he pointed to the baby in the carseat, "is three months." He stood even taller. This was obviously a fact of pride to the young man.
Sam met his stance and said proudly, "My baby is twelve months."
The other boy's shoulders slumped, I noticed as I peeked while trying to fold her stroller. He then said, "Well then. Does your baby ride in the car facing the back, or the front."
Sam met his gaze. "In the front."
"Mmmph! Does your baby take a bottle?!"
Sam said, "Only at bedtime."
The kid had him, or so he thought. "Boy!....or girl?"
Sam said, "Girl."
"Oh man!" the kid said loudly. He looked desperate.
Sam said, "Does your baby....crawl?"
The kid looked at him in this weird game of Baby Poker. The stakes were high; Sam held all the cards. Sam stood proudly, raised an arm and pumped it: "I WIN." The stroller flattened.
The kid said with feeling, "Oh MAN!" and got in the car.
Sam looked at me and smiled. "I like having a baby sister now," he said.
Tuesday, April 19, 2011
Bedwetting
Bedwetting at any age is frustrating. The constant changing of sheets, the laundry....the smell...but for teens with autism it can be an everyday occurance. If the teen battles chronic constipation, you can almost guarantee that bedwetting comes with that, simply because of the pressure compacted bowels puts on the bladder.
What we've done with Sam, who battles chronic constipation and bedwetting, is to treat the constipation through stool softeners and laxatives. This gets things going. Limiting the amount of liquids (like after 6 p.m. for example) helps too.
Sam's bedwetting has ruined two twin mattresses. We would put the mattresses in those vinyl mattress covers, put his sheets on them -- and inevitably he would tear open the vinyl and sleep under it on top of the mattress....and pee on it.
Instead, now, we purchased a vinyl air mattress that he can sleep on. We make sure we put a cloth mattress cover on it for comfort, plus sheets. But now, when he wets the bed, there's just the cover and sheets to wash instead of steam-cleaning a mattress or replacing it. He has learned to haul out the mattress to sun and dry on the deck, after he's sprayed it with cleaner designed to kill urine smells (this is often found in the pet department for puppy mishaps).
What we've done with Sam, who battles chronic constipation and bedwetting, is to treat the constipation through stool softeners and laxatives. This gets things going. Limiting the amount of liquids (like after 6 p.m. for example) helps too.
Sam's bedwetting has ruined two twin mattresses. We would put the mattresses in those vinyl mattress covers, put his sheets on them -- and inevitably he would tear open the vinyl and sleep under it on top of the mattress....and pee on it.
Instead, now, we purchased a vinyl air mattress that he can sleep on. We make sure we put a cloth mattress cover on it for comfort, plus sheets. But now, when he wets the bed, there's just the cover and sheets to wash instead of steam-cleaning a mattress or replacing it. He has learned to haul out the mattress to sun and dry on the deck, after he's sprayed it with cleaner designed to kill urine smells (this is often found in the pet department for puppy mishaps).
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