I wonder why I don't draw more daily inspiration from my child. C has several disabilities, to be sure. She doesn't function anywhere near the level of other 4-year-olds. She's "special." "Delayed." And a host of other labels, to be sure...
When you strip all those labels away, though, what you have is a kid who truly LOVES life. She loves to laugh, and she'll find any excuse to burst out in uproarious laughter. She'll turn absolutely anything into a game. When she's told no, she finds another way to go about getting what she wants. Nothing stops her, nothing breaks her spirit, and she is ALWAYS grinning. What a great way to live life!
She is, of course, completely oblivious to the fact that she's not like other kids her age... And why shouldn't she be? What could she possibly gain by knowing that the world sees her as somehow imperfect or incomplete? In her eyes, life is beautiful. Nothing gets her down. Everything is a wonder...
Sometimes, when I'm feeling down or defeated, I really need to just take a look at my kid. Instead of seeing the dreams I had for her that won't come true, I need to focus on the joy in her life. Instead of concentrating on how I can't be all the mother she needs, I need to join in the laughter, become a part of the game, and just enjoy being with her. She's an incredible kid, and she has a lot to teach me, if only I'll open my eyes and ears...
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Friday, June 1, 2012
Monday, March 5, 2012
Recognition
Last week, I went to the doctor. Nothing big, just a re-evaluation of my bipolar medication, because my mood stabilizer seems to have had the unexpected side effect of narcolepsy, and I can't afford to keep falling asleep behind the wheel. I wasn't able to get a morning appointment, which meant I had to drag poor C up to Reno with me to wait around in a psychiatric office for an hour.
She kept herself busy in the waiting room by throwing her ball around and chasing it, only to throw it again. After a while, she got bored of that game, and she started to notice the other people in the room.... And their smart phones. THAT got her attention! So then, instead of waiting, I was chasing her down and grabbing her as she tried to steal phone after phone, purse after purse... I was relieved when we got called back to see the doc.
By the time the appointment was over, C was completely stir-crazy, so while I was juggling my copay and scheduling the next follow-up, I put her on the floor, praying she'd stay by me. Of course, that was a ridiculous notion, and the very first thing she did was walk up to the nearest couple, lean in real close, and start pointing at their phone. Fortunately, they were a very nice couple who assured me she wasn't bothering them and that I could leave her there until I finished my business. As I scooped her up to walk out the door, the woman smiled at me and said, "We'll take her!" I laughed and said, "Well, she's quite the handful." Then the woman shocked me. "Our niece has special needs, and she's just so full of love. That's the great thing about these kids; they're full of love and all they want from you is love."
This was the first time a stranger had commented on C's disabilities, aside from noticing her when she was in her wheelchair. This was the first time someone identified her developmental and cognitive disabilities that wasn't a doctor or a teacher, already familiar with her case. Someone recognized her for who she is.
I really thought I'd be devastated when that day came. I thought I'd run home and mourn the loss of the life I had dreamed for my baby, the anonymity she no longer had, the distinction of being "different" that would now follow her around for the rest of her life. Up until now, people had just assumed she was younger than she is and attributed her behavior to her age. Now, they see it. They get it. The jig's up.
Oddly, instead of being heartbroken, I found myself a little bit... relieved. It's hard to explain, but it was like this weight off my shoulders, this sense that I didn't have to protect her image so much anymore, and this relief that I didn't have to explain away her behavior. That she could be who she is, and I wouldn't have to apologize for it. People would see her and understand. At last.
In the grand scheme of things, it was one tiny moment on one insignificant day... But, for me, it was life-changing. It marked the beginning of a new chapter of life, in which we don't try to hide or mask her disabilities anymore, we don't apologize for them or for her behavior, and we can finally fully accept who she is, because the world sees it now, and the world GETS it. My child has special needs; my child has multiple disabilities; my child is an amazing person who overcomes a lot every day. I will never apologize for that again.
She kept herself busy in the waiting room by throwing her ball around and chasing it, only to throw it again. After a while, she got bored of that game, and she started to notice the other people in the room.... And their smart phones. THAT got her attention! So then, instead of waiting, I was chasing her down and grabbing her as she tried to steal phone after phone, purse after purse... I was relieved when we got called back to see the doc.
By the time the appointment was over, C was completely stir-crazy, so while I was juggling my copay and scheduling the next follow-up, I put her on the floor, praying she'd stay by me. Of course, that was a ridiculous notion, and the very first thing she did was walk up to the nearest couple, lean in real close, and start pointing at their phone. Fortunately, they were a very nice couple who assured me she wasn't bothering them and that I could leave her there until I finished my business. As I scooped her up to walk out the door, the woman smiled at me and said, "We'll take her!" I laughed and said, "Well, she's quite the handful." Then the woman shocked me. "Our niece has special needs, and she's just so full of love. That's the great thing about these kids; they're full of love and all they want from you is love."
This was the first time a stranger had commented on C's disabilities, aside from noticing her when she was in her wheelchair. This was the first time someone identified her developmental and cognitive disabilities that wasn't a doctor or a teacher, already familiar with her case. Someone recognized her for who she is.
I really thought I'd be devastated when that day came. I thought I'd run home and mourn the loss of the life I had dreamed for my baby, the anonymity she no longer had, the distinction of being "different" that would now follow her around for the rest of her life. Up until now, people had just assumed she was younger than she is and attributed her behavior to her age. Now, they see it. They get it. The jig's up.
Oddly, instead of being heartbroken, I found myself a little bit... relieved. It's hard to explain, but it was like this weight off my shoulders, this sense that I didn't have to protect her image so much anymore, and this relief that I didn't have to explain away her behavior. That she could be who she is, and I wouldn't have to apologize for it. People would see her and understand. At last.
In the grand scheme of things, it was one tiny moment on one insignificant day... But, for me, it was life-changing. It marked the beginning of a new chapter of life, in which we don't try to hide or mask her disabilities anymore, we don't apologize for them or for her behavior, and we can finally fully accept who she is, because the world sees it now, and the world GETS it. My child has special needs; my child has multiple disabilities; my child is an amazing person who overcomes a lot every day. I will never apologize for that again.
Friday, February 10, 2012
What A Great Day!
Today was one of those rare days when I truly get to sleep in as late as I want. Of course, it didn't quite work out that way, because my phone rang at the much-too-early 10:30 and woke me up. How rude! ;)
I had some work to get done today (in fact, at 9pm, I still have a few minutes' worth left to finish), but that's no big deal. It's mindless work, done at my home computer, while sipping Starbucks and listening to music if I feel like it. I don't mind working a few hours a day, especially when I think about the paycheck I'll be getting at the end of the month! ;)
I left the house three times today. The first trip out was to go sell an amp that I haven't been using, so I started the day out by clearing a large item out of my house and getting a handful of cash in exchange. Nice!
The second outing was a total surprise, out-of-the-blue, last-minute trip for something WONDERFUL: We adopted a kitty! I was trying to look up whether it's legal to own potbelly pigs within city limits here (in furtherance of a drawn-out IM joke with a friend about what to give Hubby for Valentine's Day), and I stumbled across the local animal shelter's website with a listing of adoptable pets. I only checked the cats to see if our missing cats happened to be on there, but instead, I found this beautiful little guy, only a few months older than the kitten. I linked his profile to Hubby, who responded by saying he preferred this other (female) cat. I agreed that she was quite lovely, and he pointed out that there were only 30 minutes until the shelter closed for the day, so I'd better get going! Hubby's not the impulsive type, but I guess he sensed that the house has felt a little bit empty since our two adult cats disappeared... In any event, once I had the go-ahead from him, I immediately packed up C, jumped in the car, and drove to the shelter to meet this lovely cat face-to-face! She was just THE sweetest cat I have ever met, she took to C right away, and she seemed like she'd be a perfect fit for our home.... So I signed the papers!
The only downside to the adoption is that she hasn't been spayed yet, and the shelter won't release an animal until it's been altered, so I called up our vet and made a surgery appointment. They're going to spay her on Tuesday, so the shelter will drop her off to be boarded overnight at the vet Monday night, and, once she's recovered from surgery Tuesday afternoon, I get to bring her home!
Because Hubby picked her out, and because my rule has always been female dogs and male cats only, I let him name her. Lady Gretchen Jameson McFluffington, 3rd Duchess Poofyhuntershire. Yeah, I married a strange one. ;) He actually chose Florence, but I vetoed that in favor of Gretchen. The vet said her name was too long for the file, so they're simply calling her Lady Gretchen and ignoring her title of nobility. That's okay, I think we can forgive them for that!
Lady Gretchen Jameson McFluffington, 3rd Duchess Poofyhuntershire.
The third venture out of the house today was to have a rare, delightful dinner out with Hubby and C. We rarely go out because C tends to get overly vocal at the dinner table, and we don't have a sitter, so when Hubby offers it up, I grab at it with both hands!
The highlight of the day was absolutely adopting Duchess Poofyhuntershire, but that wasn't the only bright moment in my day. I also received the copy of the Extended Protective Order in the mail--documentation that my abuser cannot come near me or C for an entire year (after which point, I suspect he'll be in prison for his pending felony charges). Although it's been official for two days, it was really reassuring to get the paperwork in the mail. I feel like framing it and putting it up on the wall!
Yet ANOTHER positive thing happened today (I know, it seems impossible for this much good to occur in a single day!) when I contacted the Disabiliy Resource Center at my university. As it turns out, my mental health diagnoses qualify me for disability services and accommodations. Things like untimed tests, or taking tests in a room without classmates, things to help ease stress about assignments and exams... All of these are good things that I have struggled all my life without, but am finally self-aware enough to ask for assistance with. Maybe the next time I'm too depressed to go to class for three weeks, I'll get some leeway instead of a D in my dance class! ;) It will be nice to have my disabilities documented and respected for what they are.
OH, and I got the call today that C's custom wheelchair is ready and can be picked up Monday! WOOHOO!!
On that note, I'm going to finish up my work for the night and wrap up this wonderful day with some television in bed. I get to sleep in again tomorrow... Here's hoping the rest of the day is as great as today was!
I had some work to get done today (in fact, at 9pm, I still have a few minutes' worth left to finish), but that's no big deal. It's mindless work, done at my home computer, while sipping Starbucks and listening to music if I feel like it. I don't mind working a few hours a day, especially when I think about the paycheck I'll be getting at the end of the month! ;)
I left the house three times today. The first trip out was to go sell an amp that I haven't been using, so I started the day out by clearing a large item out of my house and getting a handful of cash in exchange. Nice!
The second outing was a total surprise, out-of-the-blue, last-minute trip for something WONDERFUL: We adopted a kitty! I was trying to look up whether it's legal to own potbelly pigs within city limits here (in furtherance of a drawn-out IM joke with a friend about what to give Hubby for Valentine's Day), and I stumbled across the local animal shelter's website with a listing of adoptable pets. I only checked the cats to see if our missing cats happened to be on there, but instead, I found this beautiful little guy, only a few months older than the kitten. I linked his profile to Hubby, who responded by saying he preferred this other (female) cat. I agreed that she was quite lovely, and he pointed out that there were only 30 minutes until the shelter closed for the day, so I'd better get going! Hubby's not the impulsive type, but I guess he sensed that the house has felt a little bit empty since our two adult cats disappeared... In any event, once I had the go-ahead from him, I immediately packed up C, jumped in the car, and drove to the shelter to meet this lovely cat face-to-face! She was just THE sweetest cat I have ever met, she took to C right away, and she seemed like she'd be a perfect fit for our home.... So I signed the papers!
The only downside to the adoption is that she hasn't been spayed yet, and the shelter won't release an animal until it's been altered, so I called up our vet and made a surgery appointment. They're going to spay her on Tuesday, so the shelter will drop her off to be boarded overnight at the vet Monday night, and, once she's recovered from surgery Tuesday afternoon, I get to bring her home!
Because Hubby picked her out, and because my rule has always been female dogs and male cats only, I let him name her. Lady Gretchen Jameson McFluffington, 3rd Duchess Poofyhuntershire. Yeah, I married a strange one. ;) He actually chose Florence, but I vetoed that in favor of Gretchen. The vet said her name was too long for the file, so they're simply calling her Lady Gretchen and ignoring her title of nobility. That's okay, I think we can forgive them for that!
The third venture out of the house today was to have a rare, delightful dinner out with Hubby and C. We rarely go out because C tends to get overly vocal at the dinner table, and we don't have a sitter, so when Hubby offers it up, I grab at it with both hands!
The highlight of the day was absolutely adopting Duchess Poofyhuntershire, but that wasn't the only bright moment in my day. I also received the copy of the Extended Protective Order in the mail--documentation that my abuser cannot come near me or C for an entire year (after which point, I suspect he'll be in prison for his pending felony charges). Although it's been official for two days, it was really reassuring to get the paperwork in the mail. I feel like framing it and putting it up on the wall!
Yet ANOTHER positive thing happened today (I know, it seems impossible for this much good to occur in a single day!) when I contacted the Disabiliy Resource Center at my university. As it turns out, my mental health diagnoses qualify me for disability services and accommodations. Things like untimed tests, or taking tests in a room without classmates, things to help ease stress about assignments and exams... All of these are good things that I have struggled all my life without, but am finally self-aware enough to ask for assistance with. Maybe the next time I'm too depressed to go to class for three weeks, I'll get some leeway instead of a D in my dance class! ;) It will be nice to have my disabilities documented and respected for what they are.
OH, and I got the call today that C's custom wheelchair is ready and can be picked up Monday! WOOHOO!!
On that note, I'm going to finish up my work for the night and wrap up this wonderful day with some television in bed. I get to sleep in again tomorrow... Here's hoping the rest of the day is as great as today was!
Sunday, January 29, 2012
Perspective
This week was the first week of classes for the spring semester. I have two hybrid classes that meet Saturdays and online, and one class that meets entirely online. I will spend a total of 5 days on campus this semester, but those will be long (9a-4p) days of intense informational overloading. I will spend, on average, 20-35 hours per week on my computer working on school assignments or reading online information. That's in addition to about 10 hours a week of reading textbooks. Just in case you didn't think being a grad student was a full-time gig, heh. All of that's in addition to 15 hrs/wk of work for my job, and the countless, 'round-the-clock hours spent being a full-time Mom.
Yeah, I'm a busy gal when school's in full swing!
I was originally enrolled to begin classes the summer of 2010, but then I joined up with a local band and realized that one of the gigs on the band calendar directly conflicted with one of my mandatory Saturday classes, and I chose at the time to be in a band rather than be a student.
They say hindsight is 20-20, and now, looking back, I certainly wish I had chosen school over the band. I'd be finishing up this semester or next instead of just now getting to the meat of my Master's program. I'd have spared myself a lot of emotional pain and trauma if I'd gone the student route instead of the rock star route... But, then again, I'd have missed out on a lot of fun times and life-altering experiences. There's nothing quite like pouring your heart out to a roomful of strangers through song or having your name up on a casino marquis as the weekend's main attraction. If I had gone to school when I originally planned instead of trying my hand at the band business, I'd have never known what I was missing. I might have spent the rest of my life wondering... Now, I can say with certainty that I gave it a shot, and it wasn't for me.
Some people are suited for a life on the road, living paycheck to paycheck, feeding on the applause from the crowd and the free meal vouchers given as payment, but I'm much happier being rooted down, spending time with my family, and having a predictable day-to-day routine. I like that I wake up at the same time every day to put C on the bus, then I have each morning's routine, then I greet her bus again at noon. I like having due dates for school assignments, books to read on a predetermined schedule, and regular work to churn out for a paycheck. I LOVE sleeping in my own bed every night instead of shuffling from one hotel room to the next. One important thing to note, however, is that I didn't fully appreciate all of these things until I spent just over a year living an entirely different sort of life. I had to try out both to know without a doubt where I belong. I'm glad I can be so certain now.
This post is titled Perspective, but it's not just about perspective on my career path or the last year and a half. It's also about the perspective I'm given from my classes.
I'm studying to be an Early Childhood Special Educator. That means I'm being educated and trained on any number of disabilities and high-risk situations faced by children from birth through 8 years old. I'm also being educated on how children in this age range typically develop, when not affected by high-risk situations or disabilities. It's all very eye-opening, particularly in regards to my own life.
Having a child with disabilities and complex medical situations can be a real downer sometimes. It's easy to focus on how each day is more challenging or more expensive than it would have been if your child had been lucky enough to be born "typical." It's also easy to trick yourself into thinking you know all there is to know about life with disabilities.
One of the most important things I have learned from my graduate coursework is that I only know one tiny perspective. I know MY situation, but my situation differs greatly from that of every other parent out there, whether their child has any disabilities or medical challenges or not. I will never know what it's like to be the parent of a child with autism, no matter how much I study to better understand it. I will never know what it's like to be the parent of a toddler who is typically developing and going through the "terrible twos," because that wasn't my reality. I will never know what it's like to have a child with a life-threatening condition and live in constant fear that each moment could be the last. (Of course, I say I'll never know these things, but I plan on having one or two more children in the next few years, so maybe I'll get a glimpse into one of those other lives... You never know what life will bring!) I never thought I had all the answers to parenting or to parenting a child with special needs, but my classes are a constant reminder that I really don't even come close to knowing it all. They're a constant reminder that things could have been a lot better, they could have been a lot worse, or they could have just been completely different. My experiences, my challenges, my joys, and my overall perspectives... They're so tiny and isolated and unique. They are mine and mine alone, and they can't be compared to those of anyone else. It's so easy to close your mind to all the other lives around you, all the other ideas and perspectives... But I am fortunate to have regular and eye-opening reminders that my perspective is only one of millions. It's nice to be kept in check, forced to keep an open mind, and constantly challenged to try and see the world through another's eyes.
It's awfully nice to have perspective.
Yeah, I'm a busy gal when school's in full swing!
I was originally enrolled to begin classes the summer of 2010, but then I joined up with a local band and realized that one of the gigs on the band calendar directly conflicted with one of my mandatory Saturday classes, and I chose at the time to be in a band rather than be a student.
They say hindsight is 20-20, and now, looking back, I certainly wish I had chosen school over the band. I'd be finishing up this semester or next instead of just now getting to the meat of my Master's program. I'd have spared myself a lot of emotional pain and trauma if I'd gone the student route instead of the rock star route... But, then again, I'd have missed out on a lot of fun times and life-altering experiences. There's nothing quite like pouring your heart out to a roomful of strangers through song or having your name up on a casino marquis as the weekend's main attraction. If I had gone to school when I originally planned instead of trying my hand at the band business, I'd have never known what I was missing. I might have spent the rest of my life wondering... Now, I can say with certainty that I gave it a shot, and it wasn't for me.
Some people are suited for a life on the road, living paycheck to paycheck, feeding on the applause from the crowd and the free meal vouchers given as payment, but I'm much happier being rooted down, spending time with my family, and having a predictable day-to-day routine. I like that I wake up at the same time every day to put C on the bus, then I have each morning's routine, then I greet her bus again at noon. I like having due dates for school assignments, books to read on a predetermined schedule, and regular work to churn out for a paycheck. I LOVE sleeping in my own bed every night instead of shuffling from one hotel room to the next. One important thing to note, however, is that I didn't fully appreciate all of these things until I spent just over a year living an entirely different sort of life. I had to try out both to know without a doubt where I belong. I'm glad I can be so certain now.
This post is titled Perspective, but it's not just about perspective on my career path or the last year and a half. It's also about the perspective I'm given from my classes.
I'm studying to be an Early Childhood Special Educator. That means I'm being educated and trained on any number of disabilities and high-risk situations faced by children from birth through 8 years old. I'm also being educated on how children in this age range typically develop, when not affected by high-risk situations or disabilities. It's all very eye-opening, particularly in regards to my own life.
Having a child with disabilities and complex medical situations can be a real downer sometimes. It's easy to focus on how each day is more challenging or more expensive than it would have been if your child had been lucky enough to be born "typical." It's also easy to trick yourself into thinking you know all there is to know about life with disabilities.
One of the most important things I have learned from my graduate coursework is that I only know one tiny perspective. I know MY situation, but my situation differs greatly from that of every other parent out there, whether their child has any disabilities or medical challenges or not. I will never know what it's like to be the parent of a child with autism, no matter how much I study to better understand it. I will never know what it's like to be the parent of a toddler who is typically developing and going through the "terrible twos," because that wasn't my reality. I will never know what it's like to have a child with a life-threatening condition and live in constant fear that each moment could be the last. (Of course, I say I'll never know these things, but I plan on having one or two more children in the next few years, so maybe I'll get a glimpse into one of those other lives... You never know what life will bring!) I never thought I had all the answers to parenting or to parenting a child with special needs, but my classes are a constant reminder that I really don't even come close to knowing it all. They're a constant reminder that things could have been a lot better, they could have been a lot worse, or they could have just been completely different. My experiences, my challenges, my joys, and my overall perspectives... They're so tiny and isolated and unique. They are mine and mine alone, and they can't be compared to those of anyone else. It's so easy to close your mind to all the other lives around you, all the other ideas and perspectives... But I am fortunate to have regular and eye-opening reminders that my perspective is only one of millions. It's nice to be kept in check, forced to keep an open mind, and constantly challenged to try and see the world through another's eyes.
It's awfully nice to have perspective.
Thursday, November 24, 2011
Custom Wheelchairs
Although my daughter can walk short distances with her butterfly-covered pink AFOs, long distances just aren't in the cards for her right now. She tires easily, and she's just getting too big to carry around like a baby. Besides, she's not a baby--she'll be 4 in less than two months, so it's really time for me to stop acting like she's an infant.
Last year, we got her a pediatric wheelchair for Christmas. The thing is huge compared to her runt-sized frame, but it has a seat belt, it rolls, and it does the job. We use it for long days (like our 3-hour visit to Shriners Children's Hospital on Tuesday), sporting events, trips to the mall or other events that require a lot of walking, and for travel. (There is NO WAY I'm carrying this child through an airport while lugging around a diaper bag and carry-on. It's just not happening.) The wheelchair has been great. It has saved us a world of trouble and made our last few trips to San Francisco and Oklahoma a breeze. Unfortunately, the doctors told me on Tuesday that it simply will not do for Ceili. She needs a smaller, more lightweight wheelchair with a custom seat.
...A custom seat. For a wheelchair. I didn't even know such things existed! She needs something small enough to cradle her tiny body that will support her where her lack of a spine (okay, sacral agenesis and caudal regression) cannot. Easy! ...Or so I thought.
With the current wheelchair, we just shopped around online and picked from the three or so options for pediatric wheelchairs. Now there's a prescription involved, and insurance, and a medical device company that has to work with her physical therapist... It's insane!
The first place I found that carries wheelchairs in our area very politely told me that they do not contract with our insurance, and they referred me to the only company that does. Company B told me that they don't do custom anything, and I have to call back Company A and have them get special authorization from my insurance company if I want anything other than a wheelchair exactly like the one my daughter already uses. So I call the first company back, and they're very helpful (this was a long and tedious process, but everyone was really nice along the way, which was a pleasant change from the norm in our medical misadventures). After an hour of failed fax attempts, the prescription finally made it into their office, and I was told that someone from their company would be in contact with the physical therapist at Ceili's preschool to set up a time to discuss Ceili's wheelchair needs and to fit her for a seat.
At this point, I'm allegedly out of the process. All I do is sit back and wait while the company talks to my insurance company, meets with the PT, designs and builds my daughter's wheelchair, and then sends me the chair and the bill. Typing it out in one nice little paragraph really undervalues the struggle I went through to get to this point in the game. I was on the phone or hovering over a fax machine for nearly four solid hours yesterday, desperate to get the ball rolling before the holiday hit and everyone went home for the long weekend. It was crazy stressful and made my head spin.... But so do most things involving Ceili and doctors, to be fair.
So what have we learned so far about Ceili without me having to write up her medical history for you? She's visually impaired (legally blind due to bilateral colobomas of the iris, retina, and optic nerves); she has caudal regression, sacral agenesis, and scoliosis; she's small for her age; she uses assistive devices for mobility (AFOs and a wheelchair); she has cognitive delays. That's just the tip of the iceberg, really... But this blog isn't about listing all the things that make my child atypical, so I won't throw any more at you. We'll just continue to let things creep up naturally in my posts.
Last year, we got her a pediatric wheelchair for Christmas. The thing is huge compared to her runt-sized frame, but it has a seat belt, it rolls, and it does the job. We use it for long days (like our 3-hour visit to Shriners Children's Hospital on Tuesday), sporting events, trips to the mall or other events that require a lot of walking, and for travel. (There is NO WAY I'm carrying this child through an airport while lugging around a diaper bag and carry-on. It's just not happening.) The wheelchair has been great. It has saved us a world of trouble and made our last few trips to San Francisco and Oklahoma a breeze. Unfortunately, the doctors told me on Tuesday that it simply will not do for Ceili. She needs a smaller, more lightweight wheelchair with a custom seat.
...A custom seat. For a wheelchair. I didn't even know such things existed! She needs something small enough to cradle her tiny body that will support her where her lack of a spine (okay, sacral agenesis and caudal regression) cannot. Easy! ...Or so I thought.
With the current wheelchair, we just shopped around online and picked from the three or so options for pediatric wheelchairs. Now there's a prescription involved, and insurance, and a medical device company that has to work with her physical therapist... It's insane!
The first place I found that carries wheelchairs in our area very politely told me that they do not contract with our insurance, and they referred me to the only company that does. Company B told me that they don't do custom anything, and I have to call back Company A and have them get special authorization from my insurance company if I want anything other than a wheelchair exactly like the one my daughter already uses. So I call the first company back, and they're very helpful (this was a long and tedious process, but everyone was really nice along the way, which was a pleasant change from the norm in our medical misadventures). After an hour of failed fax attempts, the prescription finally made it into their office, and I was told that someone from their company would be in contact with the physical therapist at Ceili's preschool to set up a time to discuss Ceili's wheelchair needs and to fit her for a seat.
At this point, I'm allegedly out of the process. All I do is sit back and wait while the company talks to my insurance company, meets with the PT, designs and builds my daughter's wheelchair, and then sends me the chair and the bill. Typing it out in one nice little paragraph really undervalues the struggle I went through to get to this point in the game. I was on the phone or hovering over a fax machine for nearly four solid hours yesterday, desperate to get the ball rolling before the holiday hit and everyone went home for the long weekend. It was crazy stressful and made my head spin.... But so do most things involving Ceili and doctors, to be fair.
So what have we learned so far about Ceili without me having to write up her medical history for you? She's visually impaired (legally blind due to bilateral colobomas of the iris, retina, and optic nerves); she has caudal regression, sacral agenesis, and scoliosis; she's small for her age; she uses assistive devices for mobility (AFOs and a wheelchair); she has cognitive delays. That's just the tip of the iceberg, really... But this blog isn't about listing all the things that make my child atypical, so I won't throw any more at you. We'll just continue to let things creep up naturally in my posts.
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