Thank you, Loving Levi & Spectrum Circle! Next week's theme is "Don't lick that!" What's the worst thing that your child has ever licked?
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Tuesday, June 23, 2015
Confessions of Special Needs Parents: Tales from the Supermarket
Thank you, Loving Levi & Spectrum Circle! Next week's theme is "Don't lick that!" What's the worst thing that your child has ever licked?
Thursday, June 18, 2015
Finding Joy In The Middle Of Chaos
One of the most irritating things a person could say to a parent of a special needs child is, "How do you do it?" Nobody chooses for their child to have challenges; it's just something that life hands to you. I have had this said to me SO often...
(and if you're reading this & you were one of those people, please know that I don't hold it against you and that I know you said it with the best intentions & from the bottom of your heart)
...that it has become harder to smile, shrug, & say "I like to think that it's what any parent would do if they had a special needs child." Sometimes there's a snarky comment in the back of my mind, like, "Zoloft & Jesus!" or "When things get rough, I just take a happy pill. Then I suddenly see unicorns pooping butterflies and belching rainbows. That helps a lot."
But really, I cling to the good moments, pray for a better tomorrow, and countdown till bedtime--literally. And yes, medication really does help you cope. Never be afraid to ask your doctor for something to help you deal with the stress of it all if you need it. It's been said that Autism Mom's Have Stress Similar To Combat Soldiers, but I think it applies to parents of children with many other disabilities, too. We face different challenges in some ways, but it all boils down to more stress, more dependence from your child longer, and probably less than ideal support.
Back to clinging to the good stuff.. These are a few of the memories I cling to when we're having a bad day..
Her piggy face that she loved to make when she was a baby.
The giggles and smiles when she splashes in the pool.
The good moments in the middle of the rough ones... like when she started being silly while recovering from the flu a couple of years ago.
When I rode the tilt-a-whirl with her for the first time this summer. We were spinning so fast, and she looked at me with this huge grin on her face. She cheesy grinned me the whole ride
(and if you're reading this & you were one of those people, please know that I don't hold it against you and that I know you said it with the best intentions & from the bottom of your heart)
...that it has become harder to smile, shrug, & say "I like to think that it's what any parent would do if they had a special needs child." Sometimes there's a snarky comment in the back of my mind, like, "Zoloft & Jesus!" or "When things get rough, I just take a happy pill. Then I suddenly see unicorns pooping butterflies and belching rainbows. That helps a lot."
But really, I cling to the good moments, pray for a better tomorrow, and countdown till bedtime--literally. And yes, medication really does help you cope. Never be afraid to ask your doctor for something to help you deal with the stress of it all if you need it. It's been said that Autism Mom's Have Stress Similar To Combat Soldiers, but I think it applies to parents of children with many other disabilities, too. We face different challenges in some ways, but it all boils down to more stress, more dependence from your child longer, and probably less than ideal support.
Back to clinging to the good stuff.. These are a few of the memories I cling to when we're having a bad day..
The giggles and smiles when she splashes in the pool.
The good moments in the middle of the rough ones... like when she started being silly while recovering from the flu a couple of years ago.
When I rode the tilt-a-whirl with her for the first time this summer. We were spinning so fast, and she looked at me with this huge grin on her face. She cheesy grinned me the whole ride
and it made my heart melt.
That's how I do it. I find my Joy in the Middle of the Chaos. It's not always easy, but she's worth it.
Monday, June 15, 2015
Confessions of Special Needs Parents - Week One
Happy Monday!
Thank you, Loving Levi!
Thanks Spectrum Circle!
Next week we will have a "Tales From The Supermarket" theme. If you'd like to contribute, please email me your story at sweet_pea84@att.net with your preferred "handle" or message me on Facebook.
Friday, October 3, 2014
It all started with a $20 deal...
You know those email offers that you sign up for only to delete later? It was one of those things. Roo hasn't had a nice picture taken in awhile and I received an offer of 43 prints + 5 postcards & a free wall hanging of your favorite pose for $19.99 from Portrait Innovations in my inbox. I hadn't heard anything bad about them, and I figured that they couldn't be any worse than our Picture Me (Walmart) or Olan Mills (small studio in Meijers) experiences, so why not? Have I mentioned how horrible almost all of Roo's school pictures have been?? Which is understandable.. because school pictures are taken in the gym.. and, in her mind, the gym is not made for standing in lines, looking nice, and smiling for a picture, then leaving.. The gym is for running around, getting the wiggles out, downward dog, and gym class! Sometimes the gym is for movies, plays and musical instruments... but those are all a toss up. You never know how she's going to do during a convocation. Anyway, that is my personal, logical explanation for why she can't take a good school picture when she loves school so much. It has to be violating her "rules."
We get to the studio a few minutes late, carting in 2 backpacks and purse stuffed extra full of things to keep her happy if things started going south. The hubby is just holding Roo's hand, leading her inside. (I swear, "pack mull" should be added to the job description of a mother! :-) ) I quietly informed the photographer of her autism diagnosis, explained that I understood that there was a minimum amount of pictures she had to take, told her that we would do our best, but when Roo was done, she was done. She seemed very understanding. Anyway! Long story short, she did amazing. Incredible. She made it through 90 photo shots, and an outfit change without a single tear, then sat in a chair with her iPad for another half hour while her dad and I went through them. She shocked us all! These are some of my favorites!
~*Never Give Up!*~
We get to the studio a few minutes late, carting in 2 backpacks and purse stuffed extra full of things to keep her happy if things started going south. The hubby is just holding Roo's hand, leading her inside. (I swear, "pack mull" should be added to the job description of a mother! :-) ) I quietly informed the photographer of her autism diagnosis, explained that I understood that there was a minimum amount of pictures she had to take, told her that we would do our best, but when Roo was done, she was done. She seemed very understanding. Anyway! Long story short, she did amazing. Incredible. She made it through 90 photo shots, and an outfit change without a single tear, then sat in a chair with her iPad for another half hour while her dad and I went through them. She shocked us all! These are some of my favorites!
~*Never Give Up!*~
Wednesday, July 30, 2014
The Best Advice I Wish I'd Taken
Um.. So this could be a touchy subject.. I'm not sure this is the right place to discuss "arguments", "heated discussions", or "fights" between couples.. SO, allow me to introduce you to the fly on the wall, hypothetical Jane and hypothetical John. Their names have been changed to protect their privacy, and about a third of this post will be completely untrue and.. it will be up to you to figure it all out, but the main point will be obvious. That make sense?
The couple that Mr. Fly will be telling you about have been married about 10 years. Jane has brown hair, violet eyes, and a nose ring. :c) John has brown hair, chocolate brown eyes, and big muscles. The have one child. A little girl with fiery red hair, brown eyes, & a smile that lights up a room. This is his account of one afternoon's happenings:
One day John came home from a hard day's work (he lays railroad), and was upset that once again the house was not clean. He was greeted at the door by the cat. John is not particularly fond of cats, but he will pet this one when he thinks no one is looking. He finds his wife in the next room, on her kindle, and the little redhead on the couch with her tablet. She was laying on her back, feet in the air, holding it up, while she used one or both hands to play her game. The child, not the lady (because the lady hasn't been that limber or flexible since.. ever). This is the child's favorite way to hold her Ipad. The only downside is that sometimes her big toes get tired and it slips, usually falling on her face.
John goes to the bathroom, and the little wife follows to say "Hello" and "How was your day" only to get a gruff reply. He just didn't understand how the house was still dirty. "It's been dirty over a month," he says. He went on to say that he saw their child on the Ipad, perfectly content, and why couldn't you wash dishes while she's on it?? The answer is really simple. The little redhead doesn't miss a thing, and she doesn't want to play on her tablet alone. She has these "rules" of how things are supposed to go, and at this point, her mother would do almost anything to keep her from whining and crying. This has been a long, mostly unhappy summer. The wife tells him this and reminds him how often their little girl needs to eat, and how someone must be with her, and that that takes time. He insists that they should make the cat do more around the house, because, after all, all he does is sleep, eat, and use his litter box--it wouldn't hurt him to watch a little girl eat so she could clean. "That's ridiculous!" protests the wife. "How would he give her the Heimlich if she became choked?" He sputters for a moment says, "What about Dr. {Very Nice Development Pediatrician That We Haven't Seen In Years}!?!" (Now referred to as Dr. VNDP) "Huh?" Jane says. "What about Dr. VNDP?!" John repeats. Jane snaps, "Dr. VNDP lives in {another state}! We haven't seen her in years!" "But what did she say?!" "She said that I should go on a getaway with the girls for a few days! Take off for a week so that you would understand what I go through!" "What?" He looked purely shocked, by the way. "She said that you wouldn't understand unless you had to do it on your own for a few days, and I laughed, and told her that it wouldn't happen." At this point, Jane picks up the toilet plunger and beats John over the head with it. "I wish I'd done it!" she said, "because you just don't get it!"
This is where I'll stop. After living in this household for years (have I told you of my stealthiness?), I have to agree with the wife. This summer she's been kicked in the jaw over a phone call that wasn't going the child's way, endured hours of endless whining that kept away any chance of company, not to mention the meltdowns when she took her outside, because this summer has been unusually nice, bearable and even sometimes cool. This is, obviously, not what summer is supposed to feel like. The child simply doesn't allow her to clean, and even though she's just mentally exhausted by the time the redhead's bedtime rolls around, she still deserves time to relax. This has been the little girl's worst summer as far as acting out. There's still time, maybe the wifey should plan a weekend get away? I heard her tell John last night to plan on taking a week off next summer, because she was going on vacation with a couple friends. You go girl!
If you're the primary caregiver and your spouse, partner, or sperm donor doesn't "get it," let them carry the load for awhile. It will be good for everyone involved.
The couple that Mr. Fly will be telling you about have been married about 10 years. Jane has brown hair, violet eyes, and a nose ring. :c) John has brown hair, chocolate brown eyes, and big muscles. The have one child. A little girl with fiery red hair, brown eyes, & a smile that lights up a room. This is his account of one afternoon's happenings:
One day John came home from a hard day's work (he lays railroad), and was upset that once again the house was not clean. He was greeted at the door by the cat. John is not particularly fond of cats, but he will pet this one when he thinks no one is looking. He finds his wife in the next room, on her kindle, and the little redhead on the couch with her tablet. She was laying on her back, feet in the air, holding it up, while she used one or both hands to play her game. The child, not the lady (because the lady hasn't been that limber or flexible since.. ever). This is the child's favorite way to hold her Ipad. The only downside is that sometimes her big toes get tired and it slips, usually falling on her face.
John goes to the bathroom, and the little wife follows to say "Hello" and "How was your day" only to get a gruff reply. He just didn't understand how the house was still dirty. "It's been dirty over a month," he says. He went on to say that he saw their child on the Ipad, perfectly content, and why couldn't you wash dishes while she's on it?? The answer is really simple. The little redhead doesn't miss a thing, and she doesn't want to play on her tablet alone. She has these "rules" of how things are supposed to go, and at this point, her mother would do almost anything to keep her from whining and crying. This has been a long, mostly unhappy summer. The wife tells him this and reminds him how often their little girl needs to eat, and how someone must be with her, and that that takes time. He insists that they should make the cat do more around the house, because, after all, all he does is sleep, eat, and use his litter box--it wouldn't hurt him to watch a little girl eat so she could clean. "That's ridiculous!" protests the wife. "How would he give her the Heimlich if she became choked?" He sputters for a moment says, "What about Dr. {Very Nice Development Pediatrician That We Haven't Seen In Years}!?!" (Now referred to as Dr. VNDP) "Huh?" Jane says. "What about Dr. VNDP?!" John repeats. Jane snaps, "Dr. VNDP lives in {another state}! We haven't seen her in years!" "But what did she say?!" "She said that I should go on a getaway with the girls for a few days! Take off for a week so that you would understand what I go through!" "What?" He looked purely shocked, by the way. "She said that you wouldn't understand unless you had to do it on your own for a few days, and I laughed, and told her that it wouldn't happen." At this point, Jane picks up the toilet plunger and beats John over the head with it. "I wish I'd done it!" she said, "because you just don't get it!"
This is where I'll stop. After living in this household for years (have I told you of my stealthiness?), I have to agree with the wife. This summer she's been kicked in the jaw over a phone call that wasn't going the child's way, endured hours of endless whining that kept away any chance of company, not to mention the meltdowns when she took her outside, because this summer has been unusually nice, bearable and even sometimes cool. This is, obviously, not what summer is supposed to feel like. The child simply doesn't allow her to clean, and even though she's just mentally exhausted by the time the redhead's bedtime rolls around, she still deserves time to relax. This has been the little girl's worst summer as far as acting out. There's still time, maybe the wifey should plan a weekend get away? I heard her tell John last night to plan on taking a week off next summer, because she was going on vacation with a couple friends. You go girl!
If you're the primary caregiver and your spouse, partner, or sperm donor doesn't "get it," let them carry the load for awhile. It will be good for everyone involved.
Sunday, July 13, 2014
Three Things I Learned Right Away From Just Skimming...
"The Out-of-Sync Child Has Fun" by Carol Stock Kranowitz (Amazon link). And to be honest, I was shocked. We stop by Half-Price Books often, and when I saw the title I vaguely remembered one of Roo's therapist's talking about it years ago.. and ya know, it was at half-price books, and I figured, why not? MIND BLOWN. This was definitely one of the best "why not?'s" ever!
(On a side-note.. I see Jenny McCarthy's books both there & at Goodwill, and I've never been tempted. If I ever do succumb, it will be to save someone from buying them who doesn't know any better... and later.. I would burn them... with fire!!!! Muhahahaha!)
(On another side-note... Please keep in mind that I have my own version of sarcasm & humor.. And if something sounds crazy, it was probably supposed to be funny.. :-| )
Back to the book..
1. Don't just say "be careful", elaborate. - I am guilty of this all the time. If we're just coming in from outside & Roo's feet are wet, I'll have her take off her shoes, and find myself yelling, "Be Careful!" after her while she runs through the kitchen. If anything, she's probably wondering what she's supposed to be careful about. And if anything, "Be Careful!" was probably more of a distraction than an aide. Something else Roo does is yank on my arm really hard if she feels like we aren't walking fast enough, or she's trying to be silly, or... really, she probably she just gets input from that somehow.. but anyway, it nearly knocks me down the first time, every time, because there's no warning. My first response is to yell. It scares me, embarrasses me, &, frankly, gets on my nerves. This week, I'm saying, "Stop. You're going to make me fall on you and we'll both get hurt." & "You can't do that in a parking lot, or we could fall & get hit by a car. That would hurt really bad." How long I can say this in a patient voice, I don't know, but so far I'm holding it together.
2. Don't let digital experiences replace real ones. - This is a good one, & it actually caused to me unsubscribe to ABCmouse.com. For reals, I was sucked into that portal, thinking that it would be good to have around during the summer months. And honestly, they have a great program, if you can afford it. But if you're letting online puzzles replace sitting down with your child and putting together a real puzzle together, you're both missing out in the end.
3. Special needs equipment can be expensive, and DIY imitations can add up quickly, but the results can be priceless.- Self-explanatory at best, but just to say I laid it out there.. you really should provide what you can for your child. Skip the coffee, skip the girls' night/guys' night, sacrifice a little here and there, & eventually you'll have enough put back to purchase or build what your child needs. Or, if it's something MAJOR (think hospital bed), don't be afraid to set up a gofundme account or raise money in another way. Some kids get trampolines because they're fun.. my daughter got an indoor trampoline when she was nearly 3, because her therapist recommended it, & she still uses it. It was one of the best things we ever purchased for her, because we could tell that it made her feel good. And it made her feel good, because it was filling her sensory needs. That in itself could be another blog post, so I will leave you with that.. annnnnnd this really cute pic of Roo & her cousin from back in 2011! Thanks for reading! :-D
Friday, April 25, 2014
I get it, but your still wrong.
Working in the daycare field, I have a .. general, small insight on what it's like to work in the classroom environment. It involves planning for lessons, gathering supplies, and making sure you have all the help you need to make each lesson a success, no matter what that may be. It takes a lot of work that usually goes unseen.
There's also a social side & that's where I fail the most. Children don't have this affect on me, but I tend to be timid unless I'm really acquainted with someone. So being open and real with parents can be a challenge.
Parents can also be a pain in the butt or a blessing.
There's nothing like being in the middle of the morning routine when the same child comes bursting through the door late, again.. and again .. and again, once more interrupting the class. You want to ask why? Why is this happening again?? Well, first of all, you should. You should ask why.
Now I'm on the other side. I still sub for a daycare part time, & because I'm a parent of a complex child with many diagnoses, there are too many appointments and what would be sick days for me to hold a full time job.
I love my daughter so much--enough to be able to see her strengths and weaknesses. And I know she is wonderful.. And I know that she is intelligent.. And I know that she can be pokey and ..resistant, & even argumentative.. mostly at home though, & sometimes for her therapists.
And we are late.. Oh my gosh.. we are late so often, and it's so frustrating for me, as I'm sure it is her teachers and paras, but she has a diagnosis. She has a valid reason. And I'm so over it that some days, if we're going to be more than an hour late just because she was too pokey, or we overslept, I keep her home.
Being a timid person, it takes a lot of courage for me to walk her into the school late (again), and even though I usually put on a cool, this is no big deal air it's because if I didn't, I'd probably be in tears.
That being said, you can imagine the shock and hurt I felt when I heard a para make a snarky remark one of the last times I brought Roo in. The irony was that she wasn't even late for school, she just missed the bus. And this particular para probably didn't even intend for me to hear it, BUT I DID, which brings up another important fact. If your a parent who isn't homeschooling your child, at some point your going to be talked about by your child's teacher or other staff members. There are going to be moments that they're annoyed with you, or pleased with you, or just mentioning your name in general conversation, but they should never ever do it in front of you, other parents, or other children who are within earshot, especially if it's negative, because it's wrong.
I realize that there are exceptions to every rule, but this wasn't one of them. I emailed Roo's special ed teacher, explained the situation and hated to do it. Just like I feared, the para denied it, but thankfully, other staff members have continued to be polite & I feel I was believed. Which is a huge relief, because why would I make that up? I don't even know this lady's name. Yet, she denied it. Later I was told that this particular para held a respected position elsewhere, which makes it even more sad. Why can't people admit that they slipped up, or "I'm sorry, I was having a bad day," or the honest to goodness blunt truth that this child is late often, and in a moment of frustration I said something that I shouldn't have. How hard is that?
Okay, it's hard. But now I don't trust this para. I hate that.
There really isn't a good way to end this post, so I will go with a hopeful...
The End.
Monday, April 21, 2014
Why Dye When You Can "-Ing"?
I'm going to be honest, I have a love/hate relationship with the Easter holiday (and most holidays, if I was being really honest). First off, what I love... I'm a Christian and I cherish the idea of celebrating Christ's ultimate sacrifice and resurrection because He loved us that much! Before Roo & when I was younger, this time of year made me feel closer to God. Now... well, things aren't like I expected them to be. That's just the truth. I thought that when I had children I was going to relive childhood memories with them, and pass on traditions. Instead, I'm usually trying to find some little tidbit that I can tack on that will survive the sensory overload and extra excitement while still bringing on the smiles. I seriously try to keep the sparkly, sugary special needs take on life.. The whole "make new traditions" thing, but sometimes it's SO hard. And progress... can't forget progress.. sometimes it shows itself in the most unexpected ways.
For instance, this was a couple of years ago... she helped.
And last year, we managed to keep her in the room ... for the most part.
And this year...
This year she effectively communicated that she did not want to color Easter eggs. I mean, seriously, every time I asked her, "No!" But she did agree to color Easter pictures with us, and we did it as a family. It was the runner up prize I guess.
It was okay.
She was happy, & that's what matters.
The Friday before Easter, she went with me to a doctor's appointment because her daddy had to work late and I didn't have anyone to watch her on such short notice. It wasn't a big deal, but sometimes it's just a tad annoying not to be able to talk freely. Afterwards, I thought I would get lucky and she would be preoccupied enough with the Ipad that I could get an Easter outfit while we waited for my scripts to be filled. So we stopped at a dress shop.
I was not that lucky.
I forgot about the mirrors. *sheesh!*
The twenty thousand mirrors all along the walls...
So I did what I had to do.
While she was going from mirror to mirror--smudging, licking, & smiling at herself--I flew through the store and grabbed whatever caught my eye ... grabbed the first shoes that made me pause, and grabbed a dressing room. It was stressful. It was quick. I got A LOT of looks varying from pity to snooty... Buuuuttt.. It was a success! :-D
The Easter Bunny came as scheduled and Roo was happy with her goodies. Have I mentioned that the Easter Bunny doesn't bring sweets to her? Nope, he's so awesome that he brings small toys and knick-knacks, because they make her smile more than candy. ;)
My husband and I attend different churches right now. I'm okay with that, mostly. I miss having him with me during service, but we're each doing what's best for ourselves at the moment. A wise lady recently said that the grass may be greener on the other side, but that could be because it's on a septic tank! You've gotta admit, she has a point. haha
Roo usually goes to church with me, and she has become such a big girl, staying in the pew. She loves Sunday School!
She doesn't like special services though. They confuse her, I think. On a normal Sunday, we have a few songs, a small scripture reading & then everyone is dismissed to classes according to their age. She hears a Bible story in class and does activities & a coloring page with the other kids. Afterwards, they come back to the adults in the sanctuary, an offering is taken up and birthdays and anniversaries are recognized. After that, and this is her favorite part, Roo, either by herself or with some other kids, goes up front and sings a song. Then each class comes up and tells what they learned that day. It's really cute, & like I said, she loves it. During this past Easter Sunday, she waited until the gift baskets were through being given away, and started marching up to the front. In her mind, this was NOT how Sunday School was supposed to go. I ran up to her and grabbed her hand to take her back to our seat and she starts to come along, but puts on the brakes right when we're almost there. Most people don't realize that she can "talk." It's not always intelligible, but she does try and Terry & I can usually figure out what she's trying to say. She talks the most when she's angry..
"-ing!" she said.
"No," I said.
"-ing!" she said.
"Nooo," I said.
"-ing!" she said.
"No!" I said.
Then suddenly, we were addressed from the platform, and she was told that it was okay, she could come and sing. And she did. She sang her heart out. While she ran up there, my pastor gave a short explanation about how she has autism, and routine is important to her because there were many visitors. It was sweet. I know there are churches that go about inclusion all wrong, and that some people are still ignorant enough to think our special children are punishments from God, and even some idiots will try to "cast the demons" out of our children; but there are some churches that do it right, that know our children enough to know that they are blessings, & love them enough to help them through the rough spots. If your a Christian who's given up because you've come across some churches that don't understand, keep trying! Use Google! Ask around! Don't give up!
Anyway, however you celebrated Easter, I hope you enjoyed it! :-)
For instance, this was a couple of years ago... she helped.
And last year, we managed to keep her in the room ... for the most part.
And this year...
This year she effectively communicated that she did not want to color Easter eggs. I mean, seriously, every time I asked her, "No!" But she did agree to color Easter pictures with us, and we did it as a family. It was the runner up prize I guess.
It was okay.
She was happy, & that's what matters.
The Friday before Easter, she went with me to a doctor's appointment because her daddy had to work late and I didn't have anyone to watch her on such short notice. It wasn't a big deal, but sometimes it's just a tad annoying not to be able to talk freely. Afterwards, I thought I would get lucky and she would be preoccupied enough with the Ipad that I could get an Easter outfit while we waited for my scripts to be filled. So we stopped at a dress shop.
I was not that lucky.
I forgot about the mirrors. *sheesh!*
The twenty thousand mirrors all along the walls...
So I did what I had to do.
While she was going from mirror to mirror--smudging, licking, & smiling at herself--I flew through the store and grabbed whatever caught my eye ... grabbed the first shoes that made me pause, and grabbed a dressing room. It was stressful. It was quick. I got A LOT of looks varying from pity to snooty... Buuuuttt.. It was a success! :-D
The Easter Bunny came as scheduled and Roo was happy with her goodies. Have I mentioned that the Easter Bunny doesn't bring sweets to her? Nope, he's so awesome that he brings small toys and knick-knacks, because they make her smile more than candy. ;)
My husband and I attend different churches right now. I'm okay with that, mostly. I miss having him with me during service, but we're each doing what's best for ourselves at the moment. A wise lady recently said that the grass may be greener on the other side, but that could be because it's on a septic tank! You've gotta admit, she has a point. haha
Roo usually goes to church with me, and she has become such a big girl, staying in the pew. She loves Sunday School!
She doesn't like special services though. They confuse her, I think. On a normal Sunday, we have a few songs, a small scripture reading & then everyone is dismissed to classes according to their age. She hears a Bible story in class and does activities & a coloring page with the other kids. Afterwards, they come back to the adults in the sanctuary, an offering is taken up and birthdays and anniversaries are recognized. After that, and this is her favorite part, Roo, either by herself or with some other kids, goes up front and sings a song. Then each class comes up and tells what they learned that day. It's really cute, & like I said, she loves it. During this past Easter Sunday, she waited until the gift baskets were through being given away, and started marching up to the front. In her mind, this was NOT how Sunday School was supposed to go. I ran up to her and grabbed her hand to take her back to our seat and she starts to come along, but puts on the brakes right when we're almost there. Most people don't realize that she can "talk." It's not always intelligible, but she does try and Terry & I can usually figure out what she's trying to say. She talks the most when she's angry..
"-ing!" she said.
"No," I said.
"-ing!" she said.
"Nooo," I said.
"-ing!" she said.
"No!" I said.
Then suddenly, we were addressed from the platform, and she was told that it was okay, she could come and sing. And she did. She sang her heart out. While she ran up there, my pastor gave a short explanation about how she has autism, and routine is important to her because there were many visitors. It was sweet. I know there are churches that go about inclusion all wrong, and that some people are still ignorant enough to think our special children are punishments from God, and even some idiots will try to "cast the demons" out of our children; but there are some churches that do it right, that know our children enough to know that they are blessings, & love them enough to help them through the rough spots. If your a Christian who's given up because you've come across some churches that don't understand, keep trying! Use Google! Ask around! Don't give up!
Anyway, however you celebrated Easter, I hope you enjoyed it! :-)
Saturday, January 11, 2014
Not Quite A LIttle Lady
The little redhead is going through a mental growth spurt. She's finding humor in things I wish she never would. She's watching cartoons and animated movies that we would have never thought possible just a year ago (almost makes me cry tears of joy thinking about it). Like the Chipmunks movies, Cinderella, etc., and yesterday she laughed through the beginning of Stuart Little 2 (AWESOME).
Today, for the first time ever, she crawled into the dryer. To some of you, your like, "huh? what's the big deal? my kid started doing that when they started walking." Well, mine never did. She loved opening and shutting the dryer door (over and over again), but it never occurred to her to climb inside it. Today she did, & it was a proud moment. So proud, that my hubby ran and grabbed the camera and snapped some photos. Isn't she cute??
Another new(er) thing is that she loves to make herself burp, and she thinks it's funny. And if she starts giggling out of no where, seemingly for no reason, wait for it. Chances are good she's going to start ripping off some farts. Nasty, stinky, smelly farts. And she thinks it's so funny!
Yesterday, I was trying to have a few minutes of serious conversation with my mom on the phone and I told Roo that she was going to have to wait 5 minutes & then she could talk to grandma. She made it maybe 3, and crawled up on my lap with a sly smile on her face. She leaned over right into the reciever (aka my face) and forced herself to burp 3 times! I was so shocked! She thought it was so funny, and refused to say excuse me until she realized she wasn't going to talk to grandma at all if she didn't. Yes it was funny. It was hilariously horrible, but I just can't let her get by with this stuff or she'll think it's okay to act that way all the time. There's a preschooler trapped in my 1st grader.. but for all I know, first grade girls might find toots funny too. ;) It's easy to forget what the norm is.
Today, for the first time ever, she crawled into the dryer. To some of you, your like, "huh? what's the big deal? my kid started doing that when they started walking." Well, mine never did. She loved opening and shutting the dryer door (over and over again), but it never occurred to her to climb inside it. Today she did, & it was a proud moment. So proud, that my hubby ran and grabbed the camera and snapped some photos. Isn't she cute??
Another new(er) thing is that she loves to make herself burp, and she thinks it's funny. And if she starts giggling out of no where, seemingly for no reason, wait for it. Chances are good she's going to start ripping off some farts. Nasty, stinky, smelly farts. And she thinks it's so funny!
Yesterday, I was trying to have a few minutes of serious conversation with my mom on the phone and I told Roo that she was going to have to wait 5 minutes & then she could talk to grandma. She made it maybe 3, and crawled up on my lap with a sly smile on her face. She leaned over right into the reciever (aka my face) and forced herself to burp 3 times! I was so shocked! She thought it was so funny, and refused to say excuse me until she realized she wasn't going to talk to grandma at all if she didn't. Yes it was funny. It was hilariously horrible, but I just can't let her get by with this stuff or she'll think it's okay to act that way all the time. There's a preschooler trapped in my 1st grader.. but for all I know, first grade girls might find toots funny too. ;) It's easy to forget what the norm is.
Monday, January 6, 2014
Why does Roo have a feeding tube?
Today was pretty uneventful. Anything exciting that happened was posted on my Facebook page. Terry wasn't able to go to work today, & we are dealing with extreme cold temperatures. It's still unclear whether he will work tomorrow or not, but school was cancelled earlier today.
I still feel like blogging though, so here's a little (yeah right!) back story, our history, experience ..whatever you want to call it.. with feeding tubes.
Roo's Tubie
One day, towards the end of August in 2006, I was checking into the OB ward at the local hospital. I was scheduled to be induced, because, even though I was just at 38 weeks, I was huge. I was handed a gown, got settled in, hooked up to the various monitors, and given the first inducing drug. I was told that it would take about a day for this one to fully take effect and that I wouldn't actually go into labor until the next day.
The nurses left the room and Terry and I sat there excited, nervous, and chit-chatty.. For about five minutes. At five minutes later nurses rushed into our room, throwing an oxygen mask on my face, turning me on my left side, yanking out the cervix softening medication, and about giving Terry & I both a heart attack. Apparently, I was already in labor, and the baby didn't like the medicine they gave me. Little Roo's stats went back to normal and everyone calmed down. Then I had a contraction.. A big one. And I didn't feel it. "You didn't feel that?" The nurse asked with raised eyebrows and I shook my head no. In fact, I was perfectly comfortable, sitting up, laughing with visitors until it was almost the end.
That's how Roo's birth story began, but it's a long one, so I'll fast forward 8 hours later to a spinal tap, and an emergency c-section. Trust me, I will go into more details about this later. It deserves it's own post, really. When Roo was born, she had dangerously low blood sugar and a 2 vesseled umbilical cord. In case you didn't know, there are supposed to be three blood vessels in an umbilical cord, and while it doesn't seem to make a difference in some children, in others, it causes them not to get the nutrients they need while in the womb. By chance, one of the nurses spotted a small split in the back of the roof of her mouth. This automatically won my sweet baby a ride by ambulance to Riley Hospital For Children and a bed in their NICU (Neonatal Intensive Care Unit) for further testing.
For some reason, my spinal tap wasn't wearing off as quickly as they expected. In hindsight, I think this was a gift from God. There was so much chaos outside of my quiet room. A group of ...it feels mean to say inexperienced, so lets just less experienced and . .... Okay, I don't have a lot of nice things to say about this particular group of the nurses, so what's it matter anyway? A few weeks before, a new hospital opened and almost all of the experienced OB nurses switched to that hospital. The ones that I had in the OR were excellent, and another older lady--the one who actually spotted the cleft palate--they were great. The first hours of Roo's life were spent being poked over and over again by nurses who didn't know how to start an IV in a newborn. A friend told me later that someone had told them that the team from Riley would start one when they got there, but still they kept on trying. Even now, thinking about it ticks me off. So it's good that I didn't see that, but if it wasn't for this older nurse, I wouldn't even have held her at all before they took her to the children's hospital. I'm so grateful for this woman. To this day, we've never taken her back to this particular hospital.
From day one, Roo had a feeding tube of some sort. In the first few hours it was a small plastic tube that went through her mouth and down into her belly, that allowed her to be given fluids to raise her blood sugar. The next time I saw her, nearly 4 days later, the plastic tube had been moved to her nasal passage, where it went down the back of her throat, through the esophagus, and directly into her belly (same as the oral one, but through the nose). This precaution was taken because she hadn't had the proper testing to determine if she aspirated fluids when she sucked on a bottle. This is normal protocol for babies born with a cleft palate. We had sessions with feeding specialists during our NICU stay to help Roo be ready for the test when the time came. Unfortunately, she still didn't pass the test, called a swallow study, and we were eventually sent home still feeding her through the tube that went through her nose. This type of feeding tube is called an NG tube. It's usually a temporary fix.
Roo's next hospital stay was the one that taught us the words "biliary atresia" (a form of pediatric liver disease), and "Kasai" (a possible life saving surgery for infants with biliary atresia), and ..so many other words.. During Roo's Kasai surgery, she had a feeding tube placed that went directly through the abdomen and into her stomach. It seemed like a good idea. And it was. Still, we looked forward to the day we could give our baby a bottle like a typical baby, but that day didn't come. We left the hospital seven weeks later with a central line that she received TPN through (it's like IV food), and a feeding pump that hooked up to her feeding tube and pumped small amounts of formula into her belly 24 hours a day. She had a really hard time with acid reflux at that time & this was supposed to help her keep foods down. Nobody really explained how things were supposed to be, but she was still gaining weight despite all the vomiting.
When she was 4 months old, the doctors decided that she was ready & she had her central line taken out. A few days later, Dec. 26, 2006, she was admitted back into Riley for RSV, which we always assumed she got during her visit to have the central line removed. It was during this stay that she was switched to a different reflux medication, Prevacid, & I'm not exaggerating one bit that it was a life changing moment. Before, she would reflux so often, and not know how to spit it out, and we would have to use huge suction bulbs to get it out so she wouldn't choke. And you're probably thinking that common sense would have told us to say something, but we were discharged way. We thought that this was just how things were going to be for her.
At around 8 or 9 months old, she passed her swallow study. And after the many different bottles, including some pretty fancy ones that the hospital gave us, the little booger still wouldn't take a bottle. In fact, her suction was so poor that she wasn't able to use a pacifier without holding it to her mouth.. Which she did, cutely. :)
The fact that she has such a poor diet now astounds me because we worked so hard with her. We had to teach her everything. We would put a little bit of baby food in her mouth and she would look at us all wide eyed like "What am I supposed to do with this?!" and eventually it would slide out. Then we started dabbing just the teeniest bit of baby food on her green soothie pacifier and she would hold it to her mouth and yum-yum-yum it off. Gradually we were able to increase the amount on the pacifier and a few months later, she would take a bite of baby food off a spoon and stick the paci in her mouth on her own to help her swallow. That was the only way she knew how to swallow it.
At some point we started to give her those little Gerber cereal snacks--the ones that basically melt as soon as they touch your mouth--and she learned to chew. Then her Occupational Therapist suggested Cheetos. Everything changed after that. Gone were the days of baby food. It was pudding, suckers, go-gurt, chicken & stars soup, spaghettios, vegetable soup... canned corn, peas, and carrots... Then, as she became older, she would chew on pizza crust, eat tiny pieces of cut up pizza, and bologna, and cheese and.. the list goes on. We were so excited! Our church was praying, everyone, all of our friends and family, were hoping that she could get rid of the feeding tube. It seemed everyone was excited with us. I began giving her her medications by mouth, and she didn't mind most of them. The Zyrtec never went well, and I don't blame her. Ever tasted that stuff??
For six months she took everything by mouth and didn't use the feeding tube. For six months a child that was once diagnosed as "failure to thrive," grew and gained weight, and supported herself. We were right on the verge of calling doctors and letting them know that the time had arrived and she was ready to have her tube taken out. Then she got sick. Cholangitis (an infection in the bile ducts) put us in the hospital again. That was what usually put us in there. And she stopped eating. She just quit. Even after we came home, and she was better, we would start to gain momentum, she would go back in the hospital, and stop eating all over again. I don't know exactly when it happened, but gradually she quit eating most foods.
Today, at 7 years old, she will willingly eat animal crackers, pretzel sticks (or twists--never both at the same time), sometimes goldfish crackers, McDonald's french fries, cheerios and Kroger cheesy puffcorn. Rarely she'll eat carrot sticks, and will only drink milk. That's it. She gets pediasure through her feeding tube while at school or on the go, because she refuses to eat anywhere but home or my parent's house. She doesn't take any of her medications by mouth anymore.
Honestly, at first it was heartbreaking when we realized how far she had regressed. Devastating even. Not only were we disappointed, but we also knew that other people were too. Church folks, the ones who prayed so hard for her, would get confused looks on their face and say, "I thought she was over that," when they saw us giving her a bolus (fancy word for feeding her through the feeding tube). And it hurt. A lot. Now.. Now it's just annoying. Now she's a big girl with her own ideas of what sorts of food should be eaten. Sometimes she won't even eat her normal stuff because she's so repulsed by what's on our plates (think "onions"). Now we don't beat ourselves up over things we can't control.. like foods that she won't eat.
I still feel like blogging though, so here's a little (yeah right!) back story, our history, experience ..whatever you want to call it.. with feeding tubes.
Roo's Tubie
One day, towards the end of August in 2006, I was checking into the OB ward at the local hospital. I was scheduled to be induced, because, even though I was just at 38 weeks, I was huge. I was handed a gown, got settled in, hooked up to the various monitors, and given the first inducing drug. I was told that it would take about a day for this one to fully take effect and that I wouldn't actually go into labor until the next day.
The nurses left the room and Terry and I sat there excited, nervous, and chit-chatty.. For about five minutes. At five minutes later nurses rushed into our room, throwing an oxygen mask on my face, turning me on my left side, yanking out the cervix softening medication, and about giving Terry & I both a heart attack. Apparently, I was already in labor, and the baby didn't like the medicine they gave me. Little Roo's stats went back to normal and everyone calmed down. Then I had a contraction.. A big one. And I didn't feel it. "You didn't feel that?" The nurse asked with raised eyebrows and I shook my head no. In fact, I was perfectly comfortable, sitting up, laughing with visitors until it was almost the end.
That's how Roo's birth story began, but it's a long one, so I'll fast forward 8 hours later to a spinal tap, and an emergency c-section. Trust me, I will go into more details about this later. It deserves it's own post, really. When Roo was born, she had dangerously low blood sugar and a 2 vesseled umbilical cord. In case you didn't know, there are supposed to be three blood vessels in an umbilical cord, and while it doesn't seem to make a difference in some children, in others, it causes them not to get the nutrients they need while in the womb. By chance, one of the nurses spotted a small split in the back of the roof of her mouth. This automatically won my sweet baby a ride by ambulance to Riley Hospital For Children and a bed in their NICU (Neonatal Intensive Care Unit) for further testing.
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| Terry holding Roo while in the NICU |
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| Sweet Pic with NG Tube |
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| Roo and Mamaw.. The white tube coming out under her shirt attaches to a feeding pump. |
When she was 4 months old, the doctors decided that she was ready & she had her central line taken out. A few days later, Dec. 26, 2006, she was admitted back into Riley for RSV, which we always assumed she got during her visit to have the central line removed. It was during this stay that she was switched to a different reflux medication, Prevacid, & I'm not exaggerating one bit that it was a life changing moment. Before, she would reflux so often, and not know how to spit it out, and we would have to use huge suction bulbs to get it out so she wouldn't choke. And you're probably thinking that common sense would have told us to say something, but we were discharged way. We thought that this was just how things were going to be for her.
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| Pudding High :-) |
The fact that she has such a poor diet now astounds me because we worked so hard with her. We had to teach her everything. We would put a little bit of baby food in her mouth and she would look at us all wide eyed like "What am I supposed to do with this?!" and eventually it would slide out. Then we started dabbing just the teeniest bit of baby food on her green soothie pacifier and she would hold it to her mouth and yum-yum-yum it off. Gradually we were able to increase the amount on the pacifier and a few months later, she would take a bite of baby food off a spoon and stick the paci in her mouth on her own to help her swallow. That was the only way she knew how to swallow it.
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| Smile you know you want to! |
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| She would only drink out of this kind of cup for the longest time. |
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| Cheerios and fries, meal of champions! ;) |
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| Oh my gosh, she touched it! ha ha |
So, why does Roo have a feeding tube? Because she needs one.;)
Sunday, January 5, 2014
And.... It Snowed.
Have you ever wondered what it's like to be in a power outage with a special needs child? Grab a cup of coffee, settle into your chair, and listen while I tell you about my day.
The weather forecasters were pretty off on their timing of the winter storm starting, and I was hopeful that they'd be off on accumulations and temperature drops too. The day started off great. I worked on sanding down my future crafty spot off and on--a beautiful butcher block island that kept oozing a mysterious sticky resin left behind by previous owners & ultimately making it a junk spot. I did dishes, folded clothes & put them away, and as time went on I was feeling increasingly confident that we would keep our power on. So confident that I washed our winter coats. Roo spilled milk all over hers yesterday & I normally wash them all when I have to wash one.
Things were going well. Everybody was doing what they wanted. I proclaimed myself a maid for the day and informed my husband that he was now a manny (male nanny). The sink had just been loaded with more dishes--I'm not lucky enough to have a dishwasher (hired or electric), the dryer was ending it's last cycle, and the coats were in the washer waiting for the dryer. Roo was occupied watching a favorite cartoon and Terry was outside shoveling snow.
The power went out.
...
The power came on.
.....
The power went out again, and this time it stayed off. And stayed off. And stayed off.
Before I go any farther, I need to tell you that my husband is an amazing man. He's the kind of man who pulls over to help people when they have a flat, not worrying that it could all just be a setup. He's the one who takes Roo back to the OR when she needs a procedure, because mommy just can't bear to watch her child be put to sleep, even if it is just anesthesia. Today was not his best day. I often think that he would sleep better/handle certain stresses better if he would take an antidepressant. In fact, I think that if he went on medication, I would be able to take less. ;) regardless of the way this day played out, this is not his typical character.
Roo was stunned, in awe that no matter how many times she flipped the switch, the lights would not come back on. I took out an old bill to report our outage and she brought me my debit card from the desk. The look on her face was priceless, "Pay it, Mommy, quick!" :)) It was awesome.
My husband came inside from shoveling and it wasn't long before he started panicking. He wanted to go somewhere. He was afraid that the power would be out for days and we would be stuck here in sub-zero weather. I had prepared for this storm. I had a plan. I was not abandoning 2 guinea pigs & a cat, packing up every single stinking thing that my daughter would need somewhere else, packing up everything that he & I would need when the risk of traveling the roads was greater than the risk of staying home. We had groceries, we have a gas stove that doesn't require electricity to stay lit, and with this being a small home, that would probably keep us warm enough. Even the paranoid part of me was okay because being home meant keeping the house warmer than it would be if we left, and the pipes would have less chance of freezing annnnddd I know that there is an increased risk of CO2 poisoning when you heat your home with the oven, but we also have working, battery operated fire & CO2 alarms. In my mind, we were good.
Then my brother-in-law called and said that we could all camp out at his house if we wanted to and that he had a spare room. From a social perspective, this was ideal, but even in fair weather, it takes about 20 minutes to get to his house and the heavy wet snow, combined with the horrible risk of being stranded, didn't make it worth it... to me. Terry was mad. He was freaking out, and mad. I said, give it a couple of more hours. I'm at least fixing supper and then we'll decide what to do.
Roo is ultra-sensitive to emotions. I don't quite understand how she can sometimes perceive a group of happy laughing people as funny one time, and terrifying the next, but we generally just take it as it comes. It sounds stupid, but when I sense her stressing I try to put out a calm, tranquil signal. I must be halfway okay at this because I've been called "the baby whisperer" on more than one occasion over the years. Anyway, Roo is crying because daddy is mad and mommy is irritated and -- ya know what, he was a jerk and I stood my ground. You don't need to know the details, the words that were said.. I'm not airing out the laundry. My point is, our kids play off our emotions, and if we can't hold it together, how can we expect them to?
There were lots of crying spells. Once when I told Roo she would have to take a break from the Ipad because we needed to make sure we didn't run out of battery life. Another time was when I broke down sobbing over the phone with my mother, because I felt like the weight of world was on my shoulders. Another offer was made to "rescue us" --a very generous, selfless, four wheel drive offer-- and I turned it down because we didn't need rescued. Then a state of emergency was declared.. that was the whole purpose of my mom calling and I answered the phone ready to tell someone off because no one was listening to me that I didn't want to go anywhere! "Is it a blizzard?!" I asked my mother. "No," she said. "Then why is everyone freaking out?!!" God bless her, she made me feel so much better. Finally somebody told me that I was doing everything right, that it made more sense and was a good idea to stay put.
A little while later, maybe an hour, the lights came back on. I'm praying and hoping that they continue to stay on, and glad that the snow bit of this weather is over. Temperatures are dropping very low over the next couple of days, making me look forward to that promised high of 28 towards the end of this week.
The weather forecasters were pretty off on their timing of the winter storm starting, and I was hopeful that they'd be off on accumulations and temperature drops too. The day started off great. I worked on sanding down my future crafty spot off and on--a beautiful butcher block island that kept oozing a mysterious sticky resin left behind by previous owners & ultimately making it a junk spot. I did dishes, folded clothes & put them away, and as time went on I was feeling increasingly confident that we would keep our power on. So confident that I washed our winter coats. Roo spilled milk all over hers yesterday & I normally wash them all when I have to wash one.
Things were going well. Everybody was doing what they wanted. I proclaimed myself a maid for the day and informed my husband that he was now a manny (male nanny). The sink had just been loaded with more dishes--I'm not lucky enough to have a dishwasher (hired or electric), the dryer was ending it's last cycle, and the coats were in the washer waiting for the dryer. Roo was occupied watching a favorite cartoon and Terry was outside shoveling snow.
The power went out.
...
The power came on.
.....
The power went out again, and this time it stayed off. And stayed off. And stayed off.
Before I go any farther, I need to tell you that my husband is an amazing man. He's the kind of man who pulls over to help people when they have a flat, not worrying that it could all just be a setup. He's the one who takes Roo back to the OR when she needs a procedure, because mommy just can't bear to watch her child be put to sleep, even if it is just anesthesia. Today was not his best day. I often think that he would sleep better/handle certain stresses better if he would take an antidepressant. In fact, I think that if he went on medication, I would be able to take less. ;) regardless of the way this day played out, this is not his typical character.
Roo was stunned, in awe that no matter how many times she flipped the switch, the lights would not come back on. I took out an old bill to report our outage and she brought me my debit card from the desk. The look on her face was priceless, "Pay it, Mommy, quick!" :)) It was awesome.
My husband came inside from shoveling and it wasn't long before he started panicking. He wanted to go somewhere. He was afraid that the power would be out for days and we would be stuck here in sub-zero weather. I had prepared for this storm. I had a plan. I was not abandoning 2 guinea pigs & a cat, packing up every single stinking thing that my daughter would need somewhere else, packing up everything that he & I would need when the risk of traveling the roads was greater than the risk of staying home. We had groceries, we have a gas stove that doesn't require electricity to stay lit, and with this being a small home, that would probably keep us warm enough. Even the paranoid part of me was okay because being home meant keeping the house warmer than it would be if we left, and the pipes would have less chance of freezing annnnddd I know that there is an increased risk of CO2 poisoning when you heat your home with the oven, but we also have working, battery operated fire & CO2 alarms. In my mind, we were good.
Then my brother-in-law called and said that we could all camp out at his house if we wanted to and that he had a spare room. From a social perspective, this was ideal, but even in fair weather, it takes about 20 minutes to get to his house and the heavy wet snow, combined with the horrible risk of being stranded, didn't make it worth it... to me. Terry was mad. He was freaking out, and mad. I said, give it a couple of more hours. I'm at least fixing supper and then we'll decide what to do.
Roo is ultra-sensitive to emotions. I don't quite understand how she can sometimes perceive a group of happy laughing people as funny one time, and terrifying the next, but we generally just take it as it comes. It sounds stupid, but when I sense her stressing I try to put out a calm, tranquil signal. I must be halfway okay at this because I've been called "the baby whisperer" on more than one occasion over the years. Anyway, Roo is crying because daddy is mad and mommy is irritated and -- ya know what, he was a jerk and I stood my ground. You don't need to know the details, the words that were said.. I'm not airing out the laundry. My point is, our kids play off our emotions, and if we can't hold it together, how can we expect them to?
There were lots of crying spells. Once when I told Roo she would have to take a break from the Ipad because we needed to make sure we didn't run out of battery life. Another time was when I broke down sobbing over the phone with my mother, because I felt like the weight of world was on my shoulders. Another offer was made to "rescue us" --a very generous, selfless, four wheel drive offer-- and I turned it down because we didn't need rescued. Then a state of emergency was declared.. that was the whole purpose of my mom calling and I answered the phone ready to tell someone off because no one was listening to me that I didn't want to go anywhere! "Is it a blizzard?!" I asked my mother. "No," she said. "Then why is everyone freaking out?!!" God bless her, she made me feel so much better. Finally somebody told me that I was doing everything right, that it made more sense and was a good idea to stay put.
A little while later, maybe an hour, the lights came back on. I'm praying and hoping that they continue to stay on, and glad that the snow bit of this weather is over. Temperatures are dropping very low over the next couple of days, making me look forward to that promised high of 28 towards the end of this week.
Friday, January 3, 2014
We Have To Go To The Store, Now
That was one of the first things my husband said to me when he got home from work today. Roo and I were standing there ("the welcome party" *snicker*), and there were no smooches, hugs or anything for us. It was all, "Get ready, I want to go before the crowds hit, blah, blah, blah.."
Okay, so I want to know what it looked like when the crowds hit, because Wal-Mart and Krogers were packed... Petsmart, not so much.. but WalMart and Krogers?? Oh my word! You'd have thought there was some sort of major Black Friday event going on, and it was only 4:00! I know snow is coming, but it's not supposed to hit until tomorrow night.
And people are rude! What has happened to us as a society that we think it's okay to give people the eye or storm off, or nearly run someone over with your Wally-Kart on purpose?!? If you're in that big of a hurry or someone is going too slow say, "Excuse Me".. You'd be amazed at how fast the waters will part. Sometimes. That's what I did. LOUDLY.
Poor Roo! She'd had enough of crowds and stores and was in that unreachable place, sobbing her eyes out, and all I wanted to do was leave. But there were so many people checking out, even at customer service, it was like a gridlock. We weaved our way through check outs & came to the main way. It was jam packed with lines to customer service. There I was, standing there, just me with a child in my cart, who was crying loudly, obviously not trying to get in line, and only ONE person towards the end of a line looked at me and tried to move to let me through. Unfortunately, even after that one, young person tried to move, our eyes met and we both knew that even if she did get out of line, there wasn't enough room for me to get by.. So what did I do? I started playing my own round of Wally-Kart. "EXCUSE ME. EXCUSE ME. COMING THROUGH. YEAH, WE JUST WANT TO GET THROUGH HERE. THANKS SO MUCH." And Bam! It's amazing how fast people suddenly notice you when your about to run them over, teeheehee..
Roo finished her meltdown in the car while daddy checked out inside. Eventually, she calmed down enough to ask for some tissues (in her own way), and I put in a favorite CD of hers. That really mellowed her out. I don't know if she heard me or not, but all I could tell her when we got in the car, mid-meltdown, was that I understood, and sometimes crowded stores upset me too. I'd like to think that she did, but probably not. On our way home, we treated her to McDonald's fries for supper--her favorite--because she was such a trooper.. And, lets face it, after such a stressful shopping spree, nobody was up to cooking. That was our big adventure of the day, shopping.. stocking up.. and surviving. ;)
Okay, so I want to know what it looked like when the crowds hit, because Wal-Mart and Krogers were packed... Petsmart, not so much.. but WalMart and Krogers?? Oh my word! You'd have thought there was some sort of major Black Friday event going on, and it was only 4:00! I know snow is coming, but it's not supposed to hit until tomorrow night.
And people are rude! What has happened to us as a society that we think it's okay to give people the eye or storm off, or nearly run someone over with your Wally-Kart on purpose?!? If you're in that big of a hurry or someone is going too slow say, "Excuse Me".. You'd be amazed at how fast the waters will part. Sometimes. That's what I did. LOUDLY.
Poor Roo! She'd had enough of crowds and stores and was in that unreachable place, sobbing her eyes out, and all I wanted to do was leave. But there were so many people checking out, even at customer service, it was like a gridlock. We weaved our way through check outs & came to the main way. It was jam packed with lines to customer service. There I was, standing there, just me with a child in my cart, who was crying loudly, obviously not trying to get in line, and only ONE person towards the end of a line looked at me and tried to move to let me through. Unfortunately, even after that one, young person tried to move, our eyes met and we both knew that even if she did get out of line, there wasn't enough room for me to get by.. So what did I do? I started playing my own round of Wally-Kart. "EXCUSE ME. EXCUSE ME. COMING THROUGH. YEAH, WE JUST WANT TO GET THROUGH HERE. THANKS SO MUCH." And Bam! It's amazing how fast people suddenly notice you when your about to run them over, teeheehee..
Roo finished her meltdown in the car while daddy checked out inside. Eventually, she calmed down enough to ask for some tissues (in her own way), and I put in a favorite CD of hers. That really mellowed her out. I don't know if she heard me or not, but all I could tell her when we got in the car, mid-meltdown, was that I understood, and sometimes crowded stores upset me too. I'd like to think that she did, but probably not. On our way home, we treated her to McDonald's fries for supper--her favorite--because she was such a trooper.. And, lets face it, after such a stressful shopping spree, nobody was up to cooking. That was our big adventure of the day, shopping.. stocking up.. and surviving. ;)
Saturday, November 9, 2013
Tantrums & Friends
I remember standing there, excited, nervous, so happy, yet scared... We were going home, really going home, and I told the Surgeon I had one last question.. "Wait," I said, "one more thing... If things hadn't gone the way they did.. If there hadn't been a bile leak, how long would our stay have been?" "Oh," she said, "..about a week." and she smiled at me. For a split second I froze. If there was ever a moment for a **That's not fair!!*** tantrum, it was then, but I didn't even realize it. We were inpatient for roughly 7 weeks. This was our second stay, and if I could go back and tell the second stay me one thing... I would hug me until it hurt to breathe, and then I would tell me that everything was going to be okay.
Now my sweetie is 7 years old. It seems crazy to have a child that old. If I wanted to, I could throw a tantrum every day. Not just for my daughter, but for all the other kids who deal with diseases and disabilities.What would it accomplish though? People always want someone to blame, someone to yell at, because it makes them feel better, but honestly, I just feel like.. this is life?? Nobody ever knows how it's going to play out, and no one is exempt from it's challenges.
One thing I have learned & cried over, is you will find out who your true friends are. The ones who visited you in the hospital (or had a really good reason if they didn't), the ones who text just to see how you're doing, and the ones who put a little bit of extra effort into dragging you out of the house when they know you're going through a tough time--those are your true friends. Sometimes Family is just a Friend in disguise.
I've also realized that being honest with myself will save me and others from a lot of disappointment. For instance, my house is dirty, I want to clean it (because I should), and I have a pile of fabric waiting to be turned into something incredible.. So I tell myself that if I hurry I will get everything shiny & sparkly and still have time to start a project... and then I feel so let down when the house is just cleanish (not sparkly) when Roo gets off the bus.. & I haven't started any projects.
So, just know that I want to be that awesome modern version of Mary Poppins, but I can't. That's not me. And Me is just learning to be honest with herself & with others about herself... and that's just something that everyone is going to have to get used to.
Lots of Love,
~Cassie
Now my sweetie is 7 years old. It seems crazy to have a child that old. If I wanted to, I could throw a tantrum every day. Not just for my daughter, but for all the other kids who deal with diseases and disabilities.What would it accomplish though? People always want someone to blame, someone to yell at, because it makes them feel better, but honestly, I just feel like.. this is life?? Nobody ever knows how it's going to play out, and no one is exempt from it's challenges.
One thing I have learned & cried over, is you will find out who your true friends are. The ones who visited you in the hospital (or had a really good reason if they didn't), the ones who text just to see how you're doing, and the ones who put a little bit of extra effort into dragging you out of the house when they know you're going through a tough time--those are your true friends. Sometimes Family is just a Friend in disguise.
I've also realized that being honest with myself will save me and others from a lot of disappointment. For instance, my house is dirty, I want to clean it (because I should), and I have a pile of fabric waiting to be turned into something incredible.. So I tell myself that if I hurry I will get everything shiny & sparkly and still have time to start a project... and then I feel so let down when the house is just cleanish (not sparkly) when Roo gets off the bus.. & I haven't started any projects.
So, just know that I want to be that awesome modern version of Mary Poppins, but I can't. That's not me. And Me is just learning to be honest with herself & with others about herself... and that's just something that everyone is going to have to get used to.
Lots of Love,
~Cassie
Saturday, October 5, 2013
Glimmers of Me..
There hasn't been a lot going on around here. Right now, I'm eating popcorn & sipping Pepsi out of a cute cup decorated in a smarties theme. Sleepless in Seattle is on in the background, which is one of my all time favorite movies. The hubby is gone & the kiddo is asleep, & sometimes I just get tired of the quietness.
I pulled a muscle in my calf last week during a massive, early morning charley horse, which sent me to the ER the following night fearing a blood clot. Tests showed the all clear and the check out lady asked me for a $500 co-pay.. which was confusing because I thought it was $100? Either way, the fifth "bill me later" seemed to get through to her, lol.
This past week has been horrible as far as getting to school on time. I think we made it to the bus stop twice.. Anyway, next week will be better, right??
I throughly cleaned my bedroom today.. something that doesn't happen very often.. and it's nice. Sheets are in the dryer & I can't wait to put them on my bed..
And *this* is the excitement of my life! And *this*... is why I haven't been writing. Not a whole lot to share. :)
Just in case you were wondering, the little booger butt is doing great with the potty business. We're getting tons more dry pull-ups when we potty, and the sticker system actually helped this time.
The older Roo gets, the more that I see she does have some of me in her. It's more than looks, and it probably seems odd that it would be such a big deal, but I never knew if I would see any of "me" in her. For instance, she is SOOOO pokey in the mornings, and that is so me. I don't know how many times I've considered apologizing to my mother for all the missed buses just to see if our mornings would suddenly get better.
Something I excelled at as a child was reading, and Roo has always liked books, but now things are different. She's not chewing on a board book, or flipping through the pages ninety miles an hour, she's listening. I went out on a limb and changed our bedtime routine a month or so ago. I needed it. It was getting old & there were too many teary nights. It took some tweaking, but after a couple of nights she was hooked. We call all the people she loves to call earlier, and after snack, meds, & potty, we settle down on the couch and I read to her from a chapter book. Right now we're reading "Charlie & the Chocolate Factory" & I'm loving it just as much as she is. She lays there and listens until she falls asleep & we carry her to her bed. This is awesome. We both look forward to our time reading together, and that is something that I definitely didn't know would ever happen.
I pulled a muscle in my calf last week during a massive, early morning charley horse, which sent me to the ER the following night fearing a blood clot. Tests showed the all clear and the check out lady asked me for a $500 co-pay.. which was confusing because I thought it was $100? Either way, the fifth "bill me later" seemed to get through to her, lol.
This past week has been horrible as far as getting to school on time. I think we made it to the bus stop twice.. Anyway, next week will be better, right??
I throughly cleaned my bedroom today.. something that doesn't happen very often.. and it's nice. Sheets are in the dryer & I can't wait to put them on my bed..
And *this* is the excitement of my life! And *this*... is why I haven't been writing. Not a whole lot to share. :)
Just in case you were wondering, the little booger butt is doing great with the potty business. We're getting tons more dry pull-ups when we potty, and the sticker system actually helped this time.
The older Roo gets, the more that I see she does have some of me in her. It's more than looks, and it probably seems odd that it would be such a big deal, but I never knew if I would see any of "me" in her. For instance, she is SOOOO pokey in the mornings, and that is so me. I don't know how many times I've considered apologizing to my mother for all the missed buses just to see if our mornings would suddenly get better.
Something I excelled at as a child was reading, and Roo has always liked books, but now things are different. She's not chewing on a board book, or flipping through the pages ninety miles an hour, she's listening. I went out on a limb and changed our bedtime routine a month or so ago. I needed it. It was getting old & there were too many teary nights. It took some tweaking, but after a couple of nights she was hooked. We call all the people she loves to call earlier, and after snack, meds, & potty, we settle down on the couch and I read to her from a chapter book. Right now we're reading "Charlie & the Chocolate Factory" & I'm loving it just as much as she is. She lays there and listens until she falls asleep & we carry her to her bed. This is awesome. We both look forward to our time reading together, and that is something that I definitely didn't know would ever happen.
Sunday, September 15, 2013
The Moment When The NP Needed A Hug
Thursday we had our first appointment with Urology at Riley Hospital for Children. Roo is seven years old now, and still has to wear a pullup everyday. In fact, she goes through several, and as much as we've tried, she still can't seem to let us know when she needs to go, or take herself there either. It would be so much easier just to blame her incontinence on having autism, but she has so many other complexities that that would be stupid. Yes, it could be her developmental delay/autism, or it could be some sort of abnormality linked to the biliary atresia (this is a great link that explains this form of liver disease in detail).. Or it could just be something totally separate, unrelated that may even have a simple fix, who knows? So that's why we were there, to try to find some answers.
She had an ultrasound of her kidneys & bladder, and then an x-ray of her entire abdominal area. She would have had a pee test too, if radiology would have had a potty hat, but they didn't.. and she's not one to pee in a cup. No complaining here. I'd be ticked if she decided cups were for peeing instead of drinking.
The first thing we're going to try is to get her on a rigid schedule. Roo is kinda sorta similar to a cocker spaniel.. meaning that most of her accidents happen when there is an emotional trigger of some sort.. But even though we take her often, and the school takes her often, we're going to try this method. We were told she needs to be taken to the bathroom at least six times a day, her feet need to be on a flat surface & it would be helpful if she was relaxed. We were also given several really cute reward charts that will hopefully work as an incentive to help her hold it until it's time.
She had an ultrasound of her kidneys & bladder, and then an x-ray of her entire abdominal area. She would have had a pee test too, if radiology would have had a potty hat, but they didn't.. and she's not one to pee in a cup. No complaining here. I'd be ticked if she decided cups were for peeing instead of drinking.
The first thing we're going to try is to get her on a rigid schedule. Roo is kinda sorta similar to a cocker spaniel.. meaning that most of her accidents happen when there is an emotional trigger of some sort.. But even though we take her often, and the school takes her often, we're going to try this method. We were told she needs to be taken to the bathroom at least six times a day, her feet need to be on a flat surface & it would be helpful if she was relaxed. We were also given several really cute reward charts that will hopefully work as an incentive to help her hold it until it's time.
The idea is that we are sort of reteaching her brain when it's okay to void, and that she will go often enough that she won't be able to when an emotional situation arises.
Now here's the part that disturbed me--well, one of two things. As I'm talking to this very nice nurse practitioner, I notice that she seems to get emotional from time to time--which doesn't happen often with doctors. And then she gets to the part that was probably setting her off from the start.. She told me that Roo may never fully get out of pullups, and that it broke her heart to have to tell parents that, but she didn't want to set me up with false hope only to not have it happen. *whew* Honestly, I was relieved! I was worried that she was about to tell me that Roo had kidney disease or some other abnormality that was going to drastically effect her. She was just a nice lady, and even now, what a relief. I didn't hug her, because that would have been sort of awkward, but I felt like she needed one. What bothers me though, is why wasn't I as disturbed as she was? I guess a parent of a typical child might be devastated by that sort of news, but we already knew it was a possibility so it wasn't so bad? Or am I becoming too hardhearted?
The second thing that disturbed me was the additional testing that we'll be considering if several months of a more frequent bathroom schedule doesn't work. One of the tests that was described, the nicer one, Roo doesn't even qualify for. She's just not mature enough to do a biofeedback test that uses some sort of sensor stickers placed on the buttocks to manipulate a game. :-) The other one makes me want to curl up in a ball. She would have to be fully awake (sedation sedates the bladder too, apparently), and a catheter with a tiny camera and some pressure sensors would be put the urethra and another similar one up the rectum to test the pressure & function of her bladder. There would be child life specialists in the room to try to make her comfortable, but already it seems like a lost cause. I think she'd have the meltdown of all meltdowns, and I don't blame her one bit. Just thinking about it makes me cringe. SO, if you have any positive thoughts or prayers to spare, send them our way! This reward chart really needs to work!
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