A few months ago, I packed up my two little boys and went to Costco for milk, etc. As we walked through the parking lot, Charlie was like a pinball slamming this way and that at high speeds. He asked, shouting, if we could buy chocolate raisins. I assured him that if he could be a) quiet, and b) good that we would indeed buy the large container of chocolate raisins.
But I should've realized that Charlie had already launched through the stratosphere and was now orbiting the earth. When we walked through those big open doors and he caught a panoramic view of the entire warehouse, Charlie wigged, hard core. Shrieking and writhing, he was desperate to leave.
So we left.
No biggie. I'm accustomed to Costco patrons staring when one of us loses control. Once when I was extremely pregnant with Littlest, Charlie flipped out in the shopping cart and stepped on my slice of combo pizza. Large, frustrated, pregnant, and perpetually hungry me looked at Charlie and my smashed, ruined pizza. Then I swore. Audibly. A swath of patrons in the food court line looked at me in slack-jawed shock. Apparently, nobody swears at Costco. Except for the giant woman with a giant belly and swollen ankles, pushing a giant cart piled with groceries and a screaming preschooler.
I'm down with people at Costco thinking we are nuts.
Anyhoo, I recount this story because today I packed up my two little boys and decided the time had come to put Charlie back on the Costco pony, figuratively speaking. We needed to return a sweater. Easy, fast, simple.
As we walked through the parking lot, Charlie asked me repeatedly if Costco has doors. He was fretting, but functional. We went inside, waited in line, and made our return. Charlie asked if we could get pizza.
You betcha.
Two quiet boys chowed on pizza and drinks and suckers from the bank all the way home.
Thursday, November 14, 2013
Tuesday, November 12, 2013
It's Curtains for Us: A Little Household Purgatory
Some people have described hell as a state of being acutely disappointed in oneself. Aron Ralston described hell as being trapped for days in the bottom of a cold dark canyon, alone.
But I discovered today that hell is actually ironing a bunch of enormous curtains.
If I do not live well, when I die, I believe I will be made to forever launder giant applesauce and Dorito-stained drapery panels and then spend an eternity trying with heat and starch to make them look crisp (it's impossible, btw).
I loathe ironing, which didn't help this cause.
So much effort, so much time devoted to a fruitless task. My boys don't give a Fig Newton that I have spent the better part of two days undoing the damage they have done to the window treatments. I have a feeling that unless I turn into an anthropomorphic female Great Wall blocking their access, they will be right back at wrapping themselves in the curtains, while wiping their hands and faces thereon.
It's such a first-world problem, it's ridiculous. As I cursed to myself while wielding the hot iron, I deep-down thanked heaven that I had a house free from typhoon damage in which to hang some curtains.
Cursing while giving thanks is one of those delectable ironies which is not lost on me.
I'm tremendously grateful for the boys who live in this house, and for the house that is taking a beating from the boys. There's a destructive symbiotic relationship happening with our abode and it's hard-livin' occupants. The guys are wrecking the floors, the walls, the mouldings, the toilets, the sinks, the light fixtures, and the window coverings (obvs).
Jeff and I are trying sooooooo hard to keep pace with the boy-caused destruction. We clean things. We repair things. We replace things. But it's difficult to keep up. Just this week, Jeff pulled with his pipe snake an action-figure, a fist-sized beanbag, and three toothbrushes from the toilets of this house. We are a sewer-system catastrophe in waiting.
Also ironic: that we are being undone by things put in toilets which don't belong there, while the poops are landing daily anywhere but toilets. As I bathed the five- and two-year-olds tonight, Jack tagged four areas of the house with his BM.
Maybe Alanis Morrisette should write a song about us.
But I discovered today that hell is actually ironing a bunch of enormous curtains.
If I do not live well, when I die, I believe I will be made to forever launder giant applesauce and Dorito-stained drapery panels and then spend an eternity trying with heat and starch to make them look crisp (it's impossible, btw).
I loathe ironing, which didn't help this cause.
So much effort, so much time devoted to a fruitless task. My boys don't give a Fig Newton that I have spent the better part of two days undoing the damage they have done to the window treatments. I have a feeling that unless I turn into an anthropomorphic female Great Wall blocking their access, they will be right back at wrapping themselves in the curtains, while wiping their hands and faces thereon.
It's such a first-world problem, it's ridiculous. As I cursed to myself while wielding the hot iron, I deep-down thanked heaven that I had a house free from typhoon damage in which to hang some curtains.
Cursing while giving thanks is one of those delectable ironies which is not lost on me.
I'm tremendously grateful for the boys who live in this house, and for the house that is taking a beating from the boys. There's a destructive symbiotic relationship happening with our abode and it's hard-livin' occupants. The guys are wrecking the floors, the walls, the mouldings, the toilets, the sinks, the light fixtures, and the window coverings (obvs).
Jeff and I are trying sooooooo hard to keep pace with the boy-caused destruction. We clean things. We repair things. We replace things. But it's difficult to keep up. Just this week, Jeff pulled with his pipe snake an action-figure, a fist-sized beanbag, and three toothbrushes from the toilets of this house. We are a sewer-system catastrophe in waiting.
Also ironic: that we are being undone by things put in toilets which don't belong there, while the poops are landing daily anywhere but toilets. As I bathed the five- and two-year-olds tonight, Jack tagged four areas of the house with his BM.
Maybe Alanis Morrisette should write a song about us.
Sunday, November 10, 2013
Holiday Planning Notebook
I'm dying to put up my Christmas tree. I can't do it yet because it's a fresh tree and it has yet to be cut and tied to the top of our car for special delivery at home. But I did fire up the Pandora holiday hits and had a little dance party in the kitchen to Mariah Carey's "All I Want For Christmas is You." Strangely, this is a holiday classic since it's been around since like 1992.
Okay, so it's 1994. I just looked it up. But it's been around long enough that Michael Buble has covered it. Successfully. Jack liked my dancing. He laughed the whole time. Baby stared at me with mild interest. Charlie said, "Stop dancing."
Anyway, I can't put up my tree for another week, but I can start wrapping the few gifts I've picked up. And I can listen to Christmas music nonstop.
The really terrific holiday news, however, is that we have made definitive Thanksgiving plans. At last! We are doing something this year which may not please all the folks, but it will keep us sane. We are staying home and cooking our own dinner.
This is one of those special-needs-driven moments in holiday planning. Our special need for Thanksgiving is to eat it casually, at home, with the illusion for a couple of boys that it's just a regular day. With turkey and pie and football in the background.
The boys really struggle with big groups of people, even when they are relatives. The more we do holidays in a Jack-proof house, the better. I feel pretty elated about this decision. It's the only alternative that offers any possibility of quiet, restful moments for the mom and the dad.
We've also decided that we are preordering pies from Kneaders, so pat me on the back for being a total genius.
Okay, so it's 1994. I just looked it up. But it's been around long enough that Michael Buble has covered it. Successfully. Jack liked my dancing. He laughed the whole time. Baby stared at me with mild interest. Charlie said, "Stop dancing."
Anyway, I can't put up my tree for another week, but I can start wrapping the few gifts I've picked up. And I can listen to Christmas music nonstop.
The really terrific holiday news, however, is that we have made definitive Thanksgiving plans. At last! We are doing something this year which may not please all the folks, but it will keep us sane. We are staying home and cooking our own dinner.
This is one of those special-needs-driven moments in holiday planning. Our special need for Thanksgiving is to eat it casually, at home, with the illusion for a couple of boys that it's just a regular day. With turkey and pie and football in the background.
The boys really struggle with big groups of people, even when they are relatives. The more we do holidays in a Jack-proof house, the better. I feel pretty elated about this decision. It's the only alternative that offers any possibility of quiet, restful moments for the mom and the dad.
We've also decided that we are preordering pies from Kneaders, so pat me on the back for being a total genius.
Wednesday, November 6, 2013
Let's Visit the Shrink
This morning I climbed out of my warm bed before my children woke, to the chirping of a smoke detector in need of a new battery. It was too early to get up, but there would be no buses coming to collect my boys for school today. The behavioral health clinic and my boys' psychiatrist were waiting.
The look of that squat, blocky building on the university campus with it's warrens of harshly-lighted hallways and windowless offices, embodies the way I used to feel about going there. It always felt soul-crushing, particularly when our insurance didn't cover it and we were "self-pay." They should've handed me back my debit card with a receipt which read at the bottom, "You are now officially a family who drops a wad for psychiatric appointments, even though you have insurance, which doesn't choose to cover this type of thing."
I'd look around that bland, dated waiting area and think, "No one wants to be here."
I felt differently today. I wasn't depressed walking through those colorless hallways. I watched my two boys, age nine and five, trundle along, happily racing each other to the familiar clinic. We know this place. It has no more destructive power over us, after the initial sledgehammer impact of the diagnoses. It dropped the bomb, and now it's here to help us put the pieces back together and move on.
We adjusted some meds. We talked about positive reinforcement. We discussed how to convince Jack to stop shredding things and then cramming them down the heat vents. As we talked about the shredding and the cramming, Jack casually picked up a puzzle piece from the floor, walked to the vent unit on the wall and stuffed the puzzle piece down.
Cue the demonstration of the "behaviors." Doh!
Dr. M assured me that the only people who would miss that puzzle piece would be her OCD patients, who would be forced to practice flexibility when putting it together.
We left on a buoyant note (yay for insurance which now covers the psychiatrist at the behavioral health clinic!) and had cheeseburgers and chicken strips at Aunt Kate's house, where Littlest spent the morning playing with his cousin.
It's progress.
The look of that squat, blocky building on the university campus with it's warrens of harshly-lighted hallways and windowless offices, embodies the way I used to feel about going there. It always felt soul-crushing, particularly when our insurance didn't cover it and we were "self-pay." They should've handed me back my debit card with a receipt which read at the bottom, "You are now officially a family who drops a wad for psychiatric appointments, even though you have insurance, which doesn't choose to cover this type of thing."
I'd look around that bland, dated waiting area and think, "No one wants to be here."
I felt differently today. I wasn't depressed walking through those colorless hallways. I watched my two boys, age nine and five, trundle along, happily racing each other to the familiar clinic. We know this place. It has no more destructive power over us, after the initial sledgehammer impact of the diagnoses. It dropped the bomb, and now it's here to help us put the pieces back together and move on.
We adjusted some meds. We talked about positive reinforcement. We discussed how to convince Jack to stop shredding things and then cramming them down the heat vents. As we talked about the shredding and the cramming, Jack casually picked up a puzzle piece from the floor, walked to the vent unit on the wall and stuffed the puzzle piece down.
Cue the demonstration of the "behaviors." Doh!
Dr. M assured me that the only people who would miss that puzzle piece would be her OCD patients, who would be forced to practice flexibility when putting it together.
We left on a buoyant note (yay for insurance which now covers the psychiatrist at the behavioral health clinic!) and had cheeseburgers and chicken strips at Aunt Kate's house, where Littlest spent the morning playing with his cousin.
It's progress.
Monday, November 4, 2013
Give Me Five
I wrote an essay in graduate school about how my four sisters and I resembled the five fingers on a hand. We came from the same place---the same family, but we were stretching into different directions and different lives. We were connected, yet we were going our own way.
The tone of the essay reflected the need the five of us girls had to differentiate ourselves from each other in subtle yet distinct ways. We didn't want to be lumped together. I didn't, anyway. No lumping, people. We needed separate identities, unique life experiences. Our pursuit to be identified as independent people was key as we grew and left home.
As the middle child, apparently I was a self-appointed analyst of the five sister dynamic. I guess I felt uniquely qualified to observe and dissect our sisterly behavior. Middle children have identity issues, amirite?
That was a dozen years ago, before any of us had children. Now we all have children. Between the five of us, we have 13.75 children. We've moved from twenty-somethings with a penchant for self-actualization to thirty- and forty-something's with families and uber-busy lives.
My sisters and I recently spent an entire evening trying to identify a date when we are all available for an overnight girls' getaway downtown during the upcoming holiday season. This task proved essentially impossible because we are all busy as sin, with completely irreconcilable schedules. I daresay that our encroaching responsibilities stand in the way of our connection to each other more than anything else does.
Is it too much to ask to spend a day and a night downtown with my mom and my sisters, eating non-kid food and shopping and not cleaning up after people?! The answer to that question is "probably."
Several days and multiple email conversations later, we are still laboriously figuring out a date that sort of works for everyone. We are soldiering onward, determined to do this thing. I think we can make it work. We want everyone there. My youngest sis said it well: "No sister left behind."
Give us our night away! The five fingers need to stop the jazz hand position and draw close, like a fist.
But not an angry fist. More of a back-off-while-we-hang-out-and-reconnect kind of a fist. Maybe a fist bump kind of a fist.
Or a victory fist raised high.
The tone of the essay reflected the need the five of us girls had to differentiate ourselves from each other in subtle yet distinct ways. We didn't want to be lumped together. I didn't, anyway. No lumping, people. We needed separate identities, unique life experiences. Our pursuit to be identified as independent people was key as we grew and left home.
As the middle child, apparently I was a self-appointed analyst of the five sister dynamic. I guess I felt uniquely qualified to observe and dissect our sisterly behavior. Middle children have identity issues, amirite?
That was a dozen years ago, before any of us had children. Now we all have children. Between the five of us, we have 13.75 children. We've moved from twenty-somethings with a penchant for self-actualization to thirty- and forty-something's with families and uber-busy lives.
My sisters and I recently spent an entire evening trying to identify a date when we are all available for an overnight girls' getaway downtown during the upcoming holiday season. This task proved essentially impossible because we are all busy as sin, with completely irreconcilable schedules. I daresay that our encroaching responsibilities stand in the way of our connection to each other more than anything else does.
Is it too much to ask to spend a day and a night downtown with my mom and my sisters, eating non-kid food and shopping and not cleaning up after people?! The answer to that question is "probably."
Several days and multiple email conversations later, we are still laboriously figuring out a date that sort of works for everyone. We are soldiering onward, determined to do this thing. I think we can make it work. We want everyone there. My youngest sis said it well: "No sister left behind."
Give us our night away! The five fingers need to stop the jazz hand position and draw close, like a fist.
But not an angry fist. More of a back-off-while-we-hang-out-and-reconnect kind of a fist. Maybe a fist bump kind of a fist.
Or a victory fist raised high.
Sunday, November 3, 2013
Baby Turns Two
Tonight at the family dinner, we remembered why winter is the unpopular step-sibling of the other, more gregarious seasons.
Winter family dinners move us from the spacious kid-friendly backyard into the not-as-spacious house where suddenly everybody is shouting to be heard over the din of everybody else shouting to be heard. All twenty-five of us. We love each other, but seriously. We are totally pirates.
My two-year-old ate his mashed potatoes and gravy using only his fingers. My five-year-old put on a dress he found in grandma's basement. Jack accidentally knocked over a can of orange soda and doused his pants in the process, which meant that he decided he needed to go pantless while his sweats were tumble drying.
Basically, just your average Sunday evening.
In other news, my littlest boy turned two today, which makes me glad.
I'm glad that he can walk and talk and be sassy and fun. I'm glad he is not currently riding in an ambulance transport to a bigger hospital with a better NICU. I'm glad he isn't on a ventilator. I'm glad he doesn't have a tube running from his nose to his stomach for gavage feeds. I'm glad I don't have to drive forty-five minutes each direction to visit him. I'm glad he can run and clap and sing songs and be happy.
Basically I'm really glad that he and I (and the other guys) made it through the last two years. When Littlest came along and lived his first month of life in an isolette in the newborn intensive care unit, we began a journey from three children to four. Some people appear to do this effortlessly. I've heard from more than one seasoned parent that once you have three kids, it's all chaos, so adding another is no biggie.
Liars.
Maybe for them. Maybe they are gifted in the parenting arts. Maybe they have easy offspring. Maybe they like to tell falsehoods.
Adding our fourth son to our already unique family felt rather like adding thirteen additional people into the family dynamic. Jack and Charlie both went berserk what with the hospital stay and then the baby coming home. Jack reacted to his newest sibling by painting the house with poo. Charlie began the downward behavior spiral that prompted us to seek evaluation and diagnosis.
Two years later, I'm really glad it's two years later.
We have come a long way from the baby who couldn't stay awake long enough to drink two ounces of milk, and the big brother who took Code Browns to a dastardly new level. The brother who went off the rails when the baby came home from his sojourn in the NICU? He tantrums less and asks questions more. He says please and thank you, and he flourishes with routines.
I wish I could say that I've forgotten the meaning of the term Code Brown, but today we discovered a petrified poop beneath the TV armoire downstairs.
There is always room for improvement. But there is also reason for thanksgiving.
Winter family dinners move us from the spacious kid-friendly backyard into the not-as-spacious house where suddenly everybody is shouting to be heard over the din of everybody else shouting to be heard. All twenty-five of us. We love each other, but seriously. We are totally pirates.
My two-year-old ate his mashed potatoes and gravy using only his fingers. My five-year-old put on a dress he found in grandma's basement. Jack accidentally knocked over a can of orange soda and doused his pants in the process, which meant that he decided he needed to go pantless while his sweats were tumble drying.
Basically, just your average Sunday evening.
In other news, my littlest boy turned two today, which makes me glad.
I'm glad that he can walk and talk and be sassy and fun. I'm glad he is not currently riding in an ambulance transport to a bigger hospital with a better NICU. I'm glad he isn't on a ventilator. I'm glad he doesn't have a tube running from his nose to his stomach for gavage feeds. I'm glad I don't have to drive forty-five minutes each direction to visit him. I'm glad he can run and clap and sing songs and be happy.
Basically I'm really glad that he and I (and the other guys) made it through the last two years. When Littlest came along and lived his first month of life in an isolette in the newborn intensive care unit, we began a journey from three children to four. Some people appear to do this effortlessly. I've heard from more than one seasoned parent that once you have three kids, it's all chaos, so adding another is no biggie.
Liars.
Maybe for them. Maybe they are gifted in the parenting arts. Maybe they have easy offspring. Maybe they like to tell falsehoods.
Adding our fourth son to our already unique family felt rather like adding thirteen additional people into the family dynamic. Jack and Charlie both went berserk what with the hospital stay and then the baby coming home. Jack reacted to his newest sibling by painting the house with poo. Charlie began the downward behavior spiral that prompted us to seek evaluation and diagnosis.
Two years later, I'm really glad it's two years later.
We have come a long way from the baby who couldn't stay awake long enough to drink two ounces of milk, and the big brother who took Code Browns to a dastardly new level. The brother who went off the rails when the baby came home from his sojourn in the NICU? He tantrums less and asks questions more. He says please and thank you, and he flourishes with routines.
I wish I could say that I've forgotten the meaning of the term Code Brown, but today we discovered a petrified poop beneath the TV armoire downstairs.
There is always room for improvement. But there is also reason for thanksgiving.
Wednesday, October 30, 2013
Fear
What is fear?
Halloween is here, and my kindergartener is terrified. He doesn't care about witches and skeletons and the like. He's afraid of the unknown. The prospect of wearing his costume to school, participating in a costume parade, and joining in a class party are causing him panic attacks. The most highly anticipated day of the entire school year for most children is the scariest day imaginable to my Charlie.
I'm trying to decide if I'm going to force him on the bus in his Captain America getup, essentially throwing him to the elementary school wolves, or if I make my life easier and let him stay home. It would be one less costume parade for me to attend, and since I have three boys in three different parades at three different schools, it sounds pretty tempting.
I've said it before and I'll say it right now: holidays like Halloween are stressful for kids with special needs. At least they are for mine. By association, holidays like Halloween are also stressful for me, the mom.
Let's hear it for the beautiful nothingness of November 1st, everyone!
Speaking of fear...
We saw a terrifying movie on our date last weekend which made me realize that I have a deep-seated fear of outer space. I was so afraid in Sandra Bullock's behalf as we watched Gravity, that I wanted to leave the theater just to make the anxiety stop. Costume parades don't scare me, but the cold, empty, airless, nothingness of space makes my blood ice over.
Spinning into outer darkness with no hope of survival or rescue---stop it, I can't take it! Panicking!
I'm one of these crazy types who secretly enjoys tuning her radio to an easy listening/soft hits station the day after October 31st to find the nonstop Christmas music. Maybe early Halloween morning I should put on my James Taylor holiday album so I can find my happy place. And help Charlie find his.
Halloween is here, and my kindergartener is terrified. He doesn't care about witches and skeletons and the like. He's afraid of the unknown. The prospect of wearing his costume to school, participating in a costume parade, and joining in a class party are causing him panic attacks. The most highly anticipated day of the entire school year for most children is the scariest day imaginable to my Charlie.
I'm trying to decide if I'm going to force him on the bus in his Captain America getup, essentially throwing him to the elementary school wolves, or if I make my life easier and let him stay home. It would be one less costume parade for me to attend, and since I have three boys in three different parades at three different schools, it sounds pretty tempting.
I've said it before and I'll say it right now: holidays like Halloween are stressful for kids with special needs. At least they are for mine. By association, holidays like Halloween are also stressful for me, the mom.
Let's hear it for the beautiful nothingness of November 1st, everyone!
Speaking of fear...
We saw a terrifying movie on our date last weekend which made me realize that I have a deep-seated fear of outer space. I was so afraid in Sandra Bullock's behalf as we watched Gravity, that I wanted to leave the theater just to make the anxiety stop. Costume parades don't scare me, but the cold, empty, airless, nothingness of space makes my blood ice over.
Spinning into outer darkness with no hope of survival or rescue---stop it, I can't take it! Panicking!
I'm one of these crazy types who secretly enjoys tuning her radio to an easy listening/soft hits station the day after October 31st to find the nonstop Christmas music. Maybe early Halloween morning I should put on my James Taylor holiday album so I can find my happy place. And help Charlie find his.
Tuesday, October 29, 2013
Therapeutic: adj. curative, restorative, healing
My five-year-old has started daily behavior therapy.
For a couple of hours every afternoon, he works on reading, identifying patterns, following directions, and honing his fine motor skills among other things. We both love it---he, because someone other than me is introducing lots of new toys and games into our home daily while giving him oodles of attention and reinforcement; me, because Charlie is learning and practicing useful skills instead of running away from me and jumping the fence to the neighbors'.
It's a win-win.
We've been down the in-home behavioral therapy road before. Jack did it for about three years. He went from screaming at the sight of his younger brother, to sitting side by side at a little table with the same brother and driving tiny toy trucks through play-doh. Happily. Together.
Before therapy: we could not sit at a table together for mealtime. Jack got up and wandered off as soon as anyone else sat down. There was no eating, just the throwing of food with a side of shrieking.
After therapy: we can all surround the table at the same time...while eating the separate foods that my morbidly picky eaters find acceptable. Did I say we were perfect? I am just sublimely happy that Jack will sit with us at dinner time and nosh on his Dino nuggets.
Jack came a long way in his years of therapy.
His therapists were a helpful little army of believers in Jack. They were not put off by poo. They knew how to outlast one of Jack's tantrums (which, btw, is the only way to change behavior). They were patient, but they were mostly just fun. They felt a little like family, in that they knew everything about us, yet they kept coming back. They put up with the irritating because they could see the big picture.
I still love them for it.
Our little five-year-old neighbor came to play after therapy today. As he and Charlie sat coloring pictures, our neighbor spied the therapy binder and asked what it was. I explained that it was a folder containing all the information for Charlie's therapy.
"Does Charlie learn to do somersaults during therapy?" Our little friend asked.
"He does letters, and puzzles, and games," I explained.
"Do you think I need therapy?" He wondered aloud.
No, little neighbor boy, you do not need therapy. You are bright, and kind, and focused, and well-mannered. But as for my family, we can really use some curative, restorative, healing therapy.
It's therapeutic.
For a couple of hours every afternoon, he works on reading, identifying patterns, following directions, and honing his fine motor skills among other things. We both love it---he, because someone other than me is introducing lots of new toys and games into our home daily while giving him oodles of attention and reinforcement; me, because Charlie is learning and practicing useful skills instead of running away from me and jumping the fence to the neighbors'.
It's a win-win.
We've been down the in-home behavioral therapy road before. Jack did it for about three years. He went from screaming at the sight of his younger brother, to sitting side by side at a little table with the same brother and driving tiny toy trucks through play-doh. Happily. Together.
Before therapy: we could not sit at a table together for mealtime. Jack got up and wandered off as soon as anyone else sat down. There was no eating, just the throwing of food with a side of shrieking.
After therapy: we can all surround the table at the same time...while eating the separate foods that my morbidly picky eaters find acceptable. Did I say we were perfect? I am just sublimely happy that Jack will sit with us at dinner time and nosh on his Dino nuggets.
Jack came a long way in his years of therapy.
His therapists were a helpful little army of believers in Jack. They were not put off by poo. They knew how to outlast one of Jack's tantrums (which, btw, is the only way to change behavior). They were patient, but they were mostly just fun. They felt a little like family, in that they knew everything about us, yet they kept coming back. They put up with the irritating because they could see the big picture.
I still love them for it.
Our little five-year-old neighbor came to play after therapy today. As he and Charlie sat coloring pictures, our neighbor spied the therapy binder and asked what it was. I explained that it was a folder containing all the information for Charlie's therapy.
"Does Charlie learn to do somersaults during therapy?" Our little friend asked.
"He does letters, and puzzles, and games," I explained.
"Do you think I need therapy?" He wondered aloud.
No, little neighbor boy, you do not need therapy. You are bright, and kind, and focused, and well-mannered. But as for my family, we can really use some curative, restorative, healing therapy.
It's therapeutic.
Sunday, October 27, 2013
What Special-Needs Families Do
I'm going to write about what families with special-needs children do.
But before I get into that, I'm eulogizing the beautiful weather which has filled my home with sunlight and the dappled shadows of the bright yellow cottonwood leaves outside. We've reached the cusp of the lovely fall weather. It's about ready to be blown out by something cold and wet. I'm not ready for this, mainly because I spent the last month being sickly indoors. I didn't get my fill of our temperate October.
The imminent change in weather has me waxing nostalgic for fall. Fall is still here, but it's morphing, so I am already lamenting it. I'm lamenting the end of the season when the boys play happily and at length outside, as I'm also mourning the option of leaving a few windows open for fresh air to cleanse the stinky house.
But I'm not entirely mournful. I sometimes surprise myself by summoning the perspicacity to figure out something meaningful. I did this recently. I figured out what special-needs families do.
You see, I run in some interesting circles where I meet people with disabled children. There's my online support group, my real life support group, plus myriad friends who like me have large families which include a child (or children) with special needs.
As much as a family touched by special-needs may appear basically typical on the surface, said family is actually nothing close to being typical.
They are different. We are different. I've been mentally compiling a list of the differences. I could outline them for you in a tidy list, but there's no need because the whole list boils down to one central factor.
Here it is. Are you ready for it?
Special-needs families are trying to survive.
That's it.
It's one little word and one major concept: survival. Just staying afloat.
It's a stark contrast on social media: there are the moms of special children discussing feeding tubes, seizures, daily meds, oxygen, hospitalizations, appointments with specialists, insurance snafus, and guilt. Or like me, they are discussing behavior death spirals, nonverbal child meltdowns, IEP meetings, and Code Browns.
It's less about vacations and home renovations, and more about therapy and sibling dynamics. Less flourishing; more hanging on by the fingernails.
A recurring theme among many of my online support group friends is the financial devastation which so often accompanies having a special-needs child---it's the elephant in the room for many special-needs families, hiding in plain sight from friends and family who may be unaware it is there.
When special-needs moms tag themselves at a location, it's likely at the children's hospital.
This is not a condemnation of what people put on social media. I peruse it. I consume it. I think most of it is great.
This is just me finally putting my finger on a concept that has alluded me, but which I am beginning to understand.
The difference between my family and so many others is this: we are desperately trying to survive. Non-essentials typically fall by the wayside.
But before I get into that, I'm eulogizing the beautiful weather which has filled my home with sunlight and the dappled shadows of the bright yellow cottonwood leaves outside. We've reached the cusp of the lovely fall weather. It's about ready to be blown out by something cold and wet. I'm not ready for this, mainly because I spent the last month being sickly indoors. I didn't get my fill of our temperate October.
The imminent change in weather has me waxing nostalgic for fall. Fall is still here, but it's morphing, so I am already lamenting it. I'm lamenting the end of the season when the boys play happily and at length outside, as I'm also mourning the option of leaving a few windows open for fresh air to cleanse the stinky house.
But I'm not entirely mournful. I sometimes surprise myself by summoning the perspicacity to figure out something meaningful. I did this recently. I figured out what special-needs families do.
You see, I run in some interesting circles where I meet people with disabled children. There's my online support group, my real life support group, plus myriad friends who like me have large families which include a child (or children) with special needs.
As much as a family touched by special-needs may appear basically typical on the surface, said family is actually nothing close to being typical.
They are different. We are different. I've been mentally compiling a list of the differences. I could outline them for you in a tidy list, but there's no need because the whole list boils down to one central factor.
Here it is. Are you ready for it?
Special-needs families are trying to survive.
That's it.
It's one little word and one major concept: survival. Just staying afloat.
It's a stark contrast on social media: there are the moms of special children discussing feeding tubes, seizures, daily meds, oxygen, hospitalizations, appointments with specialists, insurance snafus, and guilt. Or like me, they are discussing behavior death spirals, nonverbal child meltdowns, IEP meetings, and Code Browns.
It's less about vacations and home renovations, and more about therapy and sibling dynamics. Less flourishing; more hanging on by the fingernails.
A recurring theme among many of my online support group friends is the financial devastation which so often accompanies having a special-needs child---it's the elephant in the room for many special-needs families, hiding in plain sight from friends and family who may be unaware it is there.
When special-needs moms tag themselves at a location, it's likely at the children's hospital.
This is not a condemnation of what people put on social media. I peruse it. I consume it. I think most of it is great.
This is just me finally putting my finger on a concept that has alluded me, but which I am beginning to understand.
The difference between my family and so many others is this: we are desperately trying to survive. Non-essentials typically fall by the wayside.
Wednesday, October 23, 2013
Here's to Good Health
"Mom?" said my eldest, as I retrieved tomato sauce from the cold storage room.
"I've noticed you're starting to cook again. I really love it."
This is what happens when you spend the month of October in a netherworld of perpetual illness. But then you emerge, and make dinner, and a few people notice, and are happy.
Perhaps my rendezvous with October will be better next year.
Meantime, I made it through. Let's eat, peeps.
"I've noticed you're starting to cook again. I really love it."
This is what happens when you spend the month of October in a netherworld of perpetual illness. But then you emerge, and make dinner, and a few people notice, and are happy.
Perhaps my rendezvous with October will be better next year.
Meantime, I made it through. Let's eat, peeps.
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