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 disabilities. Show all posts
Showing posts with label disabilities. 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.
Saturday, December 3, 2011
Another Week Comes to a Close
This week was a fairly typical week. I went to the gym Monday and Wednesday mornings, I went to my therapist and started EMDR on Tuesday, I had class Wednesday night. I played WoW Tues-Thurs nights for about 2-3 hours each night (raiding), and I spent Friday being as lazy as I could possibly manage while Ceili was home because there's no school on Fridays. This morning, I woke up early to go to the salon and get my roots touched up and my bangs cut.
I had Starbucks four or five times this week, including this morning. I stuck to my diet 3 days, cheated on dinner the 4th day, and cheated outright yesterday, although it IS a flex plan with two days off per week, so it just means I have to get back on the diet tomorrow instead of waiting until Monday.
I spent three days on the phone with our pediatrician's office trying to get follow-up X-rays on the coin(?) in C's throat that showed up in her X-rays on the 22nd, which the doctor felt needed foll-up X-rays to see if it was still lodged in her throat and/or needed surgical removal. That battle to get someone on the phone and to get a phone call returned resolved in them calling me after closing on Friday to tell me I could pick up the X-ray order on Monday morning, so I guess I'll be going by there while C is at school and taking her for X-rays when she gets home. It makes me nervous knowing there was something in her throat and that it's taking this long to verify whether it's still there and whether it needs removing.
I also spoke several times with the company that will be making C's custom wheelchair, as ordered by the orthopedist at Shriner's. Things seem to be progressing well so far. They're going to talk to C's PT at the school on Monday and schedule a time to go down and evaluate C, measure her, etc to determine exactly what kind of chair and cushions she needs. That will be done before they can get authorization from our insurance company, but it seems our insurance company has a good track record of approving mobility assistive devices from that company when a doctor orders them (no small miracle there!). The insurance company typically covers $3,500 of the cost of the chair, which should be enough, unless it's determined that she needs custom molded cushions as opposed to just regular cushions that are cut to size and placed strategically for her needs, so there's a chance this new chair could cost us nothing, which would be an enormous miracle. Now I'm just crossing my fingers that there's any chance we could get the chair before we leave for the holidays on Dec. 20, because we use our current wheelchair heavily while traveling, and it would just be fantastic to have the new one ready in time for our trip!
I foolishly bought "one last" gift for my husband for Christmas, even though I couldn't afford it. It's something I know he wants, though, so it'll be worth it when he opens it and bursts with childlike excitement over the silly thing. I'm having all of his gifts shipped to my parents' house in Texas, which is where we'll be spending Christmas. His anniversary and birthday presents are going there, too, as we'll still be visiting there when those special days roll around.
For our anniversary, which happens to fall on New Year's Eve, we'll be staying at the same hotel we stayed on our wedding night, with the same view of the river and the fireworks that are set off over the river at midnight. My mom is babysitting C overnight, so we'll get to go out to dinner and/or drinks if we like, have a romantic night in a luxurious room, and try to remember what it's like to be a couple instead of just parents. Sometimes it's difficult to be both, and parenting always seems to come first, so it should be a really good night off for us. I can't wait! Plus, the next morning is his birthday, so he can open anniversary and birthday presents all in the hotel room, and I won't have my mom looking over shoulders grumbling about how I spent too much money on gifts. ;)
Ceili's school didn't send home any art projects this week, which was a bit of a disappointment. Some weeks, they send home a few things on Thursdays, and then other times, they wait a few weeks and send home a whole bag of stuff all at once. I guess they'll be sending a bag one of these weeks, so I can at least look forward to that, but I just burst with pride when those things come home from school, especially since she's doing more and more of the work by herself, and I can see her influence expressed in the art. Looking at her fingerpaintings, I can see her in my mind, hands covered in paint, smearing the page and squealing with utter delight. That's half the joy of getting her work.
I missed the post-Thanksgiving weekend 60% off custom framing at Michaels, so I'm going to have to wait for their next framing special to get a favorite fingerpainting and her first completely solo watercolor done with a paintbrush framed to hang in the hallway. I intend to turn the hall walls into a C museum with all of my favorite works. She's getting watercolors for Christmas this year, so she'll even have some homemade works to hang on the wall. (I need the hallway because, let's face it, a refrigerator door just isn't big enough to showcase all of the artistic masterpieces made by an only child with special needs!)
I've been plugging LakeshoreLearning.com on Twitter lately, and with good reason. They have an amazing array of toys and furniture that are perfect for parents or educators of children with a variety of special needs, and many of C's Christmas presents are coming from there. The biggie was the sand and water table I ordered on Nov. 28 that arrived at my door just FOUR DAYS later, on Dec. 2. I'm not going to set it up in her room until after we get home from Texas, but she is going to LOVE that. The water table is her favorite station at school, so I know it's the perfect Christmas gift for her. I'm going to have to get creative about covering the carpet in her room, though, or I'll never be able to get the sand out of it! ;)
I had Starbucks four or five times this week, including this morning. I stuck to my diet 3 days, cheated on dinner the 4th day, and cheated outright yesterday, although it IS a flex plan with two days off per week, so it just means I have to get back on the diet tomorrow instead of waiting until Monday.
I spent three days on the phone with our pediatrician's office trying to get follow-up X-rays on the coin(?) in C's throat that showed up in her X-rays on the 22nd, which the doctor felt needed foll-up X-rays to see if it was still lodged in her throat and/or needed surgical removal. That battle to get someone on the phone and to get a phone call returned resolved in them calling me after closing on Friday to tell me I could pick up the X-ray order on Monday morning, so I guess I'll be going by there while C is at school and taking her for X-rays when she gets home. It makes me nervous knowing there was something in her throat and that it's taking this long to verify whether it's still there and whether it needs removing.
I also spoke several times with the company that will be making C's custom wheelchair, as ordered by the orthopedist at Shriner's. Things seem to be progressing well so far. They're going to talk to C's PT at the school on Monday and schedule a time to go down and evaluate C, measure her, etc to determine exactly what kind of chair and cushions she needs. That will be done before they can get authorization from our insurance company, but it seems our insurance company has a good track record of approving mobility assistive devices from that company when a doctor orders them (no small miracle there!). The insurance company typically covers $3,500 of the cost of the chair, which should be enough, unless it's determined that she needs custom molded cushions as opposed to just regular cushions that are cut to size and placed strategically for her needs, so there's a chance this new chair could cost us nothing, which would be an enormous miracle. Now I'm just crossing my fingers that there's any chance we could get the chair before we leave for the holidays on Dec. 20, because we use our current wheelchair heavily while traveling, and it would just be fantastic to have the new one ready in time for our trip!
I foolishly bought "one last" gift for my husband for Christmas, even though I couldn't afford it. It's something I know he wants, though, so it'll be worth it when he opens it and bursts with childlike excitement over the silly thing. I'm having all of his gifts shipped to my parents' house in Texas, which is where we'll be spending Christmas. His anniversary and birthday presents are going there, too, as we'll still be visiting there when those special days roll around.
For our anniversary, which happens to fall on New Year's Eve, we'll be staying at the same hotel we stayed on our wedding night, with the same view of the river and the fireworks that are set off over the river at midnight. My mom is babysitting C overnight, so we'll get to go out to dinner and/or drinks if we like, have a romantic night in a luxurious room, and try to remember what it's like to be a couple instead of just parents. Sometimes it's difficult to be both, and parenting always seems to come first, so it should be a really good night off for us. I can't wait! Plus, the next morning is his birthday, so he can open anniversary and birthday presents all in the hotel room, and I won't have my mom looking over shoulders grumbling about how I spent too much money on gifts. ;)
Ceili's school didn't send home any art projects this week, which was a bit of a disappointment. Some weeks, they send home a few things on Thursdays, and then other times, they wait a few weeks and send home a whole bag of stuff all at once. I guess they'll be sending a bag one of these weeks, so I can at least look forward to that, but I just burst with pride when those things come home from school, especially since she's doing more and more of the work by herself, and I can see her influence expressed in the art. Looking at her fingerpaintings, I can see her in my mind, hands covered in paint, smearing the page and squealing with utter delight. That's half the joy of getting her work.
I missed the post-Thanksgiving weekend 60% off custom framing at Michaels, so I'm going to have to wait for their next framing special to get a favorite fingerpainting and her first completely solo watercolor done with a paintbrush framed to hang in the hallway. I intend to turn the hall walls into a C museum with all of my favorite works. She's getting watercolors for Christmas this year, so she'll even have some homemade works to hang on the wall. (I need the hallway because, let's face it, a refrigerator door just isn't big enough to showcase all of the artistic masterpieces made by an only child with special needs!)
I've been plugging LakeshoreLearning.com on Twitter lately, and with good reason. They have an amazing array of toys and furniture that are perfect for parents or educators of children with a variety of special needs, and many of C's Christmas presents are coming from there. The biggie was the sand and water table I ordered on Nov. 28 that arrived at my door just FOUR DAYS later, on Dec. 2. I'm not going to set it up in her room until after we get home from Texas, but she is going to LOVE that. The water table is her favorite station at school, so I know it's the perfect Christmas gift for her. I'm going to have to get creative about covering the carpet in her room, though, or I'll never be able to get the sand out of it! ;)
Thursday, December 1, 2011
You Just Can't Use the R-Word
First of all, it isn't medically correct. Forget politically correct for just a moment... People are no longer classified as having mental retardation. They have intellectual disabilities. So calling someone *cringe* retarded is outdated and makes you look ignorant. Congratulations.
Secondly, you never know who's listening. You may think calling something retarded or calling a person a "tard" is okay because, well hell, everyone else is doing it, right? You don't actually mean to make fun of people with disabilities, you just think your friends are being idiots. Well, what if the person at the table behind you has an ID? How do you think it makes them feel to hear the term "retarded" thrown around in a derogatory sense? What if the person in front of you in line has a child with an ID?
The one that hurts me the most is the joke about "Doing (fill in the blanks) is like being in the Special Olympics; even if you win, you're still a retard." Now, the Special Olympics are a WONDERFUL thing. They bring a sense of pride and belonging to so many kids and families. There's a sense of accomplishment, pride in doing your best and maybe even winning at something for the first time in your life. It's about support and encouragement. Why on earth would you want to turn that into something ugly by making mean-spirited JOKES about it??
I have at least one person who will never talk to me again because she posted that joke about sports fans on her Facebook profile, and I called her out on it. I pointed out that, as a mother, she should understand that it's hurtful to other parents as well as to children who have an ID, and she doesn't know everything about who's reading her posts. She didn't know that I have a child with developmental delays that will likely be diagnosed with an ID when she turns 6 (the magical age in which Nevada no longer accepts "developmental delay" as an eligibility-meeting diagnosis for special education services). Similarly, she wouldn't necessarily know if one of her friends had a brother, a sister, a cousin, an aunt, an uncle, a parent, or a grandparent with an ID. Posting that horrific joke in a public forum was just plain wrong, and I wasn't going to let it slide. I was polite in pointing out that it's harmful to make jokes and to use the r-word in a derogatory sense like that, but she was so upset that someone would point out that she did something wrong, she unfriended me and hasn't talked to me since. Frankly, my life is better off without the kinds of people who will make those jokes and then not listen to you when you point out how damaging they can be. Learn from your mistakes, kids. Don't just insist you're always right and run away.
I typically try not to call anyone out in public. I pull them aside or send them a private message indicating that what they're saying is deeply offensive, and that we could do the world a lot of good if we eradicated that word from the colloquial lexicon, one person at a time. Most people are apologetic and understand with just a gentle nudging.
The other night, I was in a 25-person group playing an online video game. Two people had already thrown out the r-word in the group chat, so I spoke up and requested that they not use that word anymore. My polite plea prompted them to use the word even more often, and three others joined in, just to taunt me. I felt sick to my stomach and nearly cried. I had to remind myself that people like that fall into my "horrible people" category, and I can't let them have power in my life. I can't let them get to me, and I can't afford to give them my tears. Those people--the ones who go out of their way to offend and to be cruel--need to be ignored. You can't save everyone, I guess...
But the battle rages on. I will continue to do my all to eradicate that word from our society, to make people more aware and more sensitive, and to protect the feelings of individuals with ID and their families. It's just too important to let go.
Secondly, you never know who's listening. You may think calling something retarded or calling a person a "tard" is okay because, well hell, everyone else is doing it, right? You don't actually mean to make fun of people with disabilities, you just think your friends are being idiots. Well, what if the person at the table behind you has an ID? How do you think it makes them feel to hear the term "retarded" thrown around in a derogatory sense? What if the person in front of you in line has a child with an ID?
The one that hurts me the most is the joke about "Doing (fill in the blanks) is like being in the Special Olympics; even if you win, you're still a retard." Now, the Special Olympics are a WONDERFUL thing. They bring a sense of pride and belonging to so many kids and families. There's a sense of accomplishment, pride in doing your best and maybe even winning at something for the first time in your life. It's about support and encouragement. Why on earth would you want to turn that into something ugly by making mean-spirited JOKES about it??
I have at least one person who will never talk to me again because she posted that joke about sports fans on her Facebook profile, and I called her out on it. I pointed out that, as a mother, she should understand that it's hurtful to other parents as well as to children who have an ID, and she doesn't know everything about who's reading her posts. She didn't know that I have a child with developmental delays that will likely be diagnosed with an ID when she turns 6 (the magical age in which Nevada no longer accepts "developmental delay" as an eligibility-meeting diagnosis for special education services). Similarly, she wouldn't necessarily know if one of her friends had a brother, a sister, a cousin, an aunt, an uncle, a parent, or a grandparent with an ID. Posting that horrific joke in a public forum was just plain wrong, and I wasn't going to let it slide. I was polite in pointing out that it's harmful to make jokes and to use the r-word in a derogatory sense like that, but she was so upset that someone would point out that she did something wrong, she unfriended me and hasn't talked to me since. Frankly, my life is better off without the kinds of people who will make those jokes and then not listen to you when you point out how damaging they can be. Learn from your mistakes, kids. Don't just insist you're always right and run away.
I typically try not to call anyone out in public. I pull them aside or send them a private message indicating that what they're saying is deeply offensive, and that we could do the world a lot of good if we eradicated that word from the colloquial lexicon, one person at a time. Most people are apologetic and understand with just a gentle nudging.
The other night, I was in a 25-person group playing an online video game. Two people had already thrown out the r-word in the group chat, so I spoke up and requested that they not use that word anymore. My polite plea prompted them to use the word even more often, and three others joined in, just to taunt me. I felt sick to my stomach and nearly cried. I had to remind myself that people like that fall into my "horrible people" category, and I can't let them have power in my life. I can't let them get to me, and I can't afford to give them my tears. Those people--the ones who go out of their way to offend and to be cruel--need to be ignored. You can't save everyone, I guess...
But the battle rages on. I will continue to do my all to eradicate that word from our society, to make people more aware and more sensitive, and to protect the feelings of individuals with ID and their families. It's just too important to let go.
Saturday, November 26, 2011
I stumbled onto this old post from my retired blog...
It was written 3 years ago, but it still speaks to me. Of course, things have changed since I wrote it. C's medical issues are just part of everyday life, not the constant struggle they used to be... The death of my niece Rebecca seems like a lifetime ago, and while it still makes me sad, it doesn't eat away at me anymore. And I've returned to a heavily medicated state to control my moods and help me be the best wife and mother that I can be. Still, though.... It's good to remember where we started, to look back and see how far we've come....
-------
It's just hard right now. I have to keep acknowledging that it's hard, which I hate, and reminding myself that it's *okay* that it's hard right now. I shouldn't be fine with everything--not yet. It's normal to be hurting. Healthy, even.
-------
It's just hard right now. I have to keep acknowledging that it's hard, which I hate, and reminding myself that it's *okay* that it's hard right now. I shouldn't be fine with everything--not yet. It's normal to be hurting. Healthy, even.
I don't know why I felt such a connection with Rebecca. I can't explain it; it was just something that was THERE, that was a part of me. Losing her, particularly before I got a chance to meet her, hurt me in a very real and deep way. Mom described it as still being "raw," and I guess she's right. It is. The slightest touch in that area stings and burns like a bitch, and it leaves a resounding dull ache that can last for hours.
Ceili can't see. I mean, she sees SOME, but I lose hope that she'll see very much. Or maybe it's not hope I'm losing; maybe I'm just moving past the denial. In any event, it SUCKS, and it breaks my heart, and I wish I could do something--ANYTHING--to change it. Same with everything else. Her chromosomes: can't I just go in and delete that extra material? Undo that little glitch in her development? I don't have high hopes after her MRI and xrays today; something about the shift in the xray tech's demeanor between when we walked in the room for the scans and when we left ten minutes later tells me he didn't see the kinds of things we had wanted him to see (or, rather, that he saw the kinds of things we didn't want him to see).
I'm feeling like a failure. Like a failure as a mother, because my body couldn't produce a healthy little girl, and because I can't have any more children without significant medical intervention to ensure that they're free of this anomaly. Failure as a wife, because I couldn't give my husband a healthy baby, and I can't give him more babies without said intervention. Failure as a woman? I don't know. I know better, but I just can't shake the sense that this is ALL MY FAULT. Perhaps Asher would have been better off with someone else who could give him healthy babies the old-fashioned, normal way. But then Ceili wouldn't have been born, and even if she isn't the typical picture of a "normal" baby, she's still beautiful and incredible, and I'm eternally grateful that she came into this world.
I'm having a hard time talking to Asher about this stuff. It seems the moment it comes up, I either start to cry or begin making inappropriate jokes about it, neither of which is particularly conducive to a constructive, healthy discussion of it all. I'm clearly just not coping with it yet.
I wake up. I feed Ceili, I change her, I schedule her doctors' appointments, I play with her, I love on her, I put her to sleep at night... I do everything she needs me to do. That's what keeps me going, what maintains some illusion of normalcy in my life. It's easy to appear strong and composed when I cannot do otherwise and still care for her properly. That doesn't make me FEEL any more strong or composed, though.
I feel lost. Frightened. Devastated. Ashamed. Guilty, hopeless, angry... A million other adjectives, all negative.
Through it all, though, I am reminded constantly of the depth of my love for Asher and Ceili. They bring such joy into my life, peace and comfort and light. They make the world a beautiful and glorious place, even though my little corner of it seems so dark and dreary right now.
I still have trouble understanding how I "landed" a man like Asher. He is brilliant, kind, and a rock. He holds me up when I feel like I can't bear my own weight. I only wish I could turn to him more right now. I seem to be stuck in this middle ground between trying to look to him for comfort and trying to offer him some comfort. I don't want to lean too much, because he has his own share of the weight to shoulder through all of this. I don't want to cry too much or seem to weak or frightened because I don't want to complicate his end of things any. At the same time, I don't want to distance myself so much that he can't lean on me a little....
I don't know. I don't know what I'm feeling or what I'm trying to say... I don't know how to handle all of this. I also know that it doesn't matter if I know how to; I have no choice BUT to handle it. So I will. I will do everything I have to do for Ceili, for Asher, for my marriage and for my family.... And I will continue to treasure the incredible man I married, and I will continue to be amazed by this beautiful child we created. I will continue to find happiness where I can, and hopefully someday soon, I'll be able to smile without it feeling forced. I'll be able to talk about Rebecca and about Ceili's medical issues without fighting back tears or feeling my throat close up on me.
I just wish I could do more. Be more. For Asher, for Ceili, and for myself.
This was not the way I imagined our life with a baby. I never thought she wouldn't be healthy or that there wouldn't be more "happy accidents" in our lifetime.
On the other hand, I never thought I would love these two so much that it could actually overpower the mood swings and keep me stable without medication. At least I can hold onto that and find true, easy happiness--no forced smiles there.
PTSD and Parenting
For 8-1/2 years, I have been battling Post Traumatic Stress Disorder. The thing is, I didn't know I had PTSD until a few months ago. It has colored everything in my life for nearly a decade, causing me to make some questionable decisions, making me keep the people I love at arm's length, and creating a very high anxiety situation in my life. I can't sleep without sleeping pills, I have to take two anxiety pills a day, and I suffer from violent night terrors that result in me beating my husband in my sleep (though, in fairness, he probably deserves it. ;) )
C is nearly 4 years.... Which means I had PTSD for years before conceiving her and for the entire time I've been her mom. On a scale of 1-10, my standard stress level is an 8 or 9. I am constantly clenching my jaw, my knees, my toes... SOMETHING. I am incapable of relaxing. So how did learning my daughter had multiple disabilities and health conditions contribute to this? Well, it certainly didn't HELP my anxiety, that's for sure!
How do you face the world head-on, advocate for your child, and remain positive and supportive of them when you constantly feel like the world is a terrifying place full of life-threatening dangers? How do you focus on creating learning opportunities for your child through play when you can't stop thinking that you have no way to protect yourself if and when someone breaks through the front door?
About a month ago, I started seeing a new therapist who specializes in EMDR (look it up; it's interesting and effective for PTSD). We laid the groundwork for the therapy, creating a prioritized list of memories that are intrusive and cause great emotional disturbances, as well as a mental "safe place" (my childhood bedroom) to which I can retreat if therapy gets too difficult and I need to feel protected. Then my insurance company sent me a letter saying they were only approving 3 visits (2 of which I had already used) to the new therapist.
I went into a panic. I cried, I shook, and I curled up in bed for hours, unable to function. I had finally found someone with a technique that could actually help me and change my life for the better, and now the insurance company is threatening to take that away from me??!? It was a nightmare, and it sent me into an emotional crisis. I went into my daughter's bedroom to sit with her for a minute, and I emerged 45 minutes later without having uttered a sound or made a single move. I can only imagine what her little brain made of that!
Sometimes, it seems nearly impossible to take care of another human life when you feel so out of control over your own life. When the world is just too big and too scary and too dangerous to function, how do you prepare a child--especially a child with special needs--to enter that world? Wouldn't it be better just to lock her in her room for her entire life and spare her the pain and anguish that lurks in the world beyond the front door?
Most days, I do just fine. I wake up, I get her ready for preschool, and I put her on the bus without any major anxiety. I don't fret while she's at school, and I'm excited when the bus drops her off and I have my baby girl back in my arms. I remember that play is educational and therapeutic, and I play with her. I try to teach her new words, new ways to play, and new skills. I am a good mother.
Then there are those days when the walls come tumbling down around me, and all I can do is sit among the rubble and mourn the evils in the world, the way in which I suffer daily, and a general sense of hopelessness that interferes with my ability to see past my daughter's challenges and makes trying to raise my expectations and overcome the obstacles nearly impossible. I am a good mother, but I am not a perfect mother. I am broken, and sometimes I just don't work correctly or as intended.
Parenting with PTSD and mental illness is a constant struggle. Sure, there are pills and therapists and online support groups to help you through it... But I never feel like I'm good enough for C. I'm not whole, so how can I be the exceptional mother her disabilities require? At least I'm healthy enough to know I need help and to seek it out. I don't give up on my mental health any more than I would give up on C. On the hard days, I fight and I keep my head above water so I can be and do all the things I need to be and do. Then there are the easy days, when I can simply enjoy the miracles in my life and the wonder that is my little girl.
I'm looking forward to getting the insurance company on my side so I can get better and have more of those easy days.
C is nearly 4 years.... Which means I had PTSD for years before conceiving her and for the entire time I've been her mom. On a scale of 1-10, my standard stress level is an 8 or 9. I am constantly clenching my jaw, my knees, my toes... SOMETHING. I am incapable of relaxing. So how did learning my daughter had multiple disabilities and health conditions contribute to this? Well, it certainly didn't HELP my anxiety, that's for sure!
How do you face the world head-on, advocate for your child, and remain positive and supportive of them when you constantly feel like the world is a terrifying place full of life-threatening dangers? How do you focus on creating learning opportunities for your child through play when you can't stop thinking that you have no way to protect yourself if and when someone breaks through the front door?
About a month ago, I started seeing a new therapist who specializes in EMDR (look it up; it's interesting and effective for PTSD). We laid the groundwork for the therapy, creating a prioritized list of memories that are intrusive and cause great emotional disturbances, as well as a mental "safe place" (my childhood bedroom) to which I can retreat if therapy gets too difficult and I need to feel protected. Then my insurance company sent me a letter saying they were only approving 3 visits (2 of which I had already used) to the new therapist.
I went into a panic. I cried, I shook, and I curled up in bed for hours, unable to function. I had finally found someone with a technique that could actually help me and change my life for the better, and now the insurance company is threatening to take that away from me??!? It was a nightmare, and it sent me into an emotional crisis. I went into my daughter's bedroom to sit with her for a minute, and I emerged 45 minutes later without having uttered a sound or made a single move. I can only imagine what her little brain made of that!
Sometimes, it seems nearly impossible to take care of another human life when you feel so out of control over your own life. When the world is just too big and too scary and too dangerous to function, how do you prepare a child--especially a child with special needs--to enter that world? Wouldn't it be better just to lock her in her room for her entire life and spare her the pain and anguish that lurks in the world beyond the front door?
Most days, I do just fine. I wake up, I get her ready for preschool, and I put her on the bus without any major anxiety. I don't fret while she's at school, and I'm excited when the bus drops her off and I have my baby girl back in my arms. I remember that play is educational and therapeutic, and I play with her. I try to teach her new words, new ways to play, and new skills. I am a good mother.
Then there are those days when the walls come tumbling down around me, and all I can do is sit among the rubble and mourn the evils in the world, the way in which I suffer daily, and a general sense of hopelessness that interferes with my ability to see past my daughter's challenges and makes trying to raise my expectations and overcome the obstacles nearly impossible. I am a good mother, but I am not a perfect mother. I am broken, and sometimes I just don't work correctly or as intended.
Parenting with PTSD and mental illness is a constant struggle. Sure, there are pills and therapists and online support groups to help you through it... But I never feel like I'm good enough for C. I'm not whole, so how can I be the exceptional mother her disabilities require? At least I'm healthy enough to know I need help and to seek it out. I don't give up on my mental health any more than I would give up on C. On the hard days, I fight and I keep my head above water so I can be and do all the things I need to be and do. Then there are the easy days, when I can simply enjoy the miracles in my life and the wonder that is my little girl.
I'm looking forward to getting the insurance company on my side so I can get better and have more of those easy days.
Friday, November 25, 2011
Language Barriers
My child will be 4 in less than two months. She knows how to say "duck" and "baba" (bottle), and I've heard her say "block," "hi," "mama," and "buh-bye" before, although only a couple of times. In terms of her receptive language she understands (but ignores) the word "no," and she understands and responds to the phrases "Let go, please," "Night-night," and "Drink your milk."
Sadly, she does not understand "Don't take off your diaper and play with your poop" or "Please stop screaming until we leave the restaurant."
Sometimes, I love that she doesn't talk. She knows how to communicate her needs and desires through gestures (although she never did pick up on the ASL I crammed down her throat for 3 years) and sounds, and it's usually very gentle and calm. It's quiet and peaceful in most cases, and what mom doesn't appreciate a few moments of quiet and peaceful, especially when raising a child with disabilities?
Other times, though, it breaks my heart that she doesn't call me Mommy or tell me that she's hungry. I can't stand it when she's crying and doesn't want a bottle or to go to sleep, so I can't figure out what it is that she wants. It's REALLY hard knowing that I can sit and read her a book or talk to her for half an hour, and all she's getting from the interaction is the soothing sound of my voice, not the meaning of any of the words. It's impossible not to wonder what the long-term implications of her current language struggles will be, but there's no way of predicting whether she'll ever use language, so wondering and worrying bring about no good whatsoever.
I love my child, and I want the best for her. That includes wanting her to be able to navigate a language-driven world on her own, without me having to stand by to guess at what she's needing or wanting. It's a struggle I face on a daily basis, and, while I want her to develop language skills, if she doesn't, I won't ever complain. She truly is perfect exactly as she is, and I treasure every challenge that comes our way because they make us stronger and bring us closer together. She's my little sidekick, and I love having her by my side.
Sadly, she does not understand "Don't take off your diaper and play with your poop" or "Please stop screaming until we leave the restaurant."
Sometimes, I love that she doesn't talk. She knows how to communicate her needs and desires through gestures (although she never did pick up on the ASL I crammed down her throat for 3 years) and sounds, and it's usually very gentle and calm. It's quiet and peaceful in most cases, and what mom doesn't appreciate a few moments of quiet and peaceful, especially when raising a child with disabilities?
Other times, though, it breaks my heart that she doesn't call me Mommy or tell me that she's hungry. I can't stand it when she's crying and doesn't want a bottle or to go to sleep, so I can't figure out what it is that she wants. It's REALLY hard knowing that I can sit and read her a book or talk to her for half an hour, and all she's getting from the interaction is the soothing sound of my voice, not the meaning of any of the words. It's impossible not to wonder what the long-term implications of her current language struggles will be, but there's no way of predicting whether she'll ever use language, so wondering and worrying bring about no good whatsoever.
I love my child, and I want the best for her. That includes wanting her to be able to navigate a language-driven world on her own, without me having to stand by to guess at what she's needing or wanting. It's a struggle I face on a daily basis, and, while I want her to develop language skills, if she doesn't, I won't ever complain. She truly is perfect exactly as she is, and I treasure every challenge that comes our way because they make us stronger and bring us closer together. She's my little sidekick, and I love having her by my side.
Thursday, November 24, 2011
Christmas Shopping
Christmas shopping for a four-year-old should be easy. You pick up the latest Dora toy, or the latest Yo Gabba Gabba whatever, or a Leapster LeapPad and some games. Done. Game over.
Shopping for a four-year-old with the cognitive abilities of an 18-month-old is a little tougher. She doesn't watch Dora or Yo Gabba Gabba (I'm really not even sure what that is) or anything else for that matter. Whether it's because she's legally blind and gets limited satisfaction from visual cues on the television or because her attention span is too short for things she doesn't understand, I don't know or care. The fact is, she only recently discovered the tv, and all she wants to do is touch it and bang against it. She might watch for a minute or two if there's something colorful and pretty going on, but that's about it. So we can knock all the show-related toys off our Christmas list.
This year, I wanted to get her a LeapPad. She loves playing with my iPhone because of the touch screen, so why not give her something of her own with a touch screen and educational games? The problem, of course, is that she won't understand the games. It will be just like anything else where she touches it and something either happens or it doesn't, and she'll enjoy tapping her finger against it for as long as things happen or for five minutes, whichever comes first. So perhaps my best-yet idea isn't such a great one.
It's difficult to buy developmentally appropriate toys for a child with disabilities. You want to buy them toys that challenge them so they grow and develop, but the toys have to be within their cognitive grasp. You can't just sit them down with a computer and toddler computer games and expect them to learn how to spell when they still have very little receptive language and no spoken language. It's a real challenge... So I have no idea what Ceili is getting for Christmas this year. I've got a 3' tent shaped like a castle for her to play in (although the castle significance will be lost on her), some stacking cups because we're working on putting things in and stacking, and butterfly magnets because she likes to play with the magnets on the fridge. That's the best I've come up with so far. Maybe I'll go by the teachers' store in Reno tomorrow and see what sorts of educational/developmental toys they have there... Because when you have a child with delays, you don't buy toys that are just toys. Everything is a learning opportunity, and you don't waste time on things that won't help them grow.
I also need to find Ceili about 20 new board books, because she's tired of her current books and has started tearing them up. (This is why we buy board books and not paper books--tougher to tear.) Surely the teachers' supply store can help me out with that one, too...
Shopping for a four-year-old with the cognitive abilities of an 18-month-old is a little tougher. She doesn't watch Dora or Yo Gabba Gabba (I'm really not even sure what that is) or anything else for that matter. Whether it's because she's legally blind and gets limited satisfaction from visual cues on the television or because her attention span is too short for things she doesn't understand, I don't know or care. The fact is, she only recently discovered the tv, and all she wants to do is touch it and bang against it. She might watch for a minute or two if there's something colorful and pretty going on, but that's about it. So we can knock all the show-related toys off our Christmas list.
This year, I wanted to get her a LeapPad. She loves playing with my iPhone because of the touch screen, so why not give her something of her own with a touch screen and educational games? The problem, of course, is that she won't understand the games. It will be just like anything else where she touches it and something either happens or it doesn't, and she'll enjoy tapping her finger against it for as long as things happen or for five minutes, whichever comes first. So perhaps my best-yet idea isn't such a great one.
It's difficult to buy developmentally appropriate toys for a child with disabilities. You want to buy them toys that challenge them so they grow and develop, but the toys have to be within their cognitive grasp. You can't just sit them down with a computer and toddler computer games and expect them to learn how to spell when they still have very little receptive language and no spoken language. It's a real challenge... So I have no idea what Ceili is getting for Christmas this year. I've got a 3' tent shaped like a castle for her to play in (although the castle significance will be lost on her), some stacking cups because we're working on putting things in and stacking, and butterfly magnets because she likes to play with the magnets on the fridge. That's the best I've come up with so far. Maybe I'll go by the teachers' store in Reno tomorrow and see what sorts of educational/developmental toys they have there... Because when you have a child with delays, you don't buy toys that are just toys. Everything is a learning opportunity, and you don't waste time on things that won't help them grow.
I also need to find Ceili about 20 new board books, because she's tired of her current books and has started tearing them up. (This is why we buy board books and not paper books--tougher to tear.) Surely the teachers' supply store can help me out with that one, too...
Subscribe to:
Posts (Atom)