I always, always want to be writing. Or reading. One or the other. I've been working on the story of AJ and Zachary for almost a year now, and just this weekend about starting a new project.
Aliza doesn't really love to read. A few times in her life she's found a book series she really likes - she loved Junie B. Jones and the My Weird School series a couple of years ago and I thought I had a lifelong reader in my house. It was short lived, thought. For the most part, she doesn't live for used book sales like her mother does.
I guess maybe at her age, I didn't either. I did love reading though. There wasn't much to pick from, so I just read my favorites over and over. The Beverly Cleary books, the Bobbsey Twins, Nancy Drew, Trixie Belden, the Oz books, and Judy Blume. I loved them all and read and reread them. Of course, I didn't have an iPod.
I've given Aliza a few of the old "classics" that I know I was into when I was her age, but she just can't get hooked. Even with some of the new titles that are out there now, she can't find something she really likes. Harry Potter? Moved too slow.
This weekend I realized what I should be doing to help her. I should be writing a book for her to read.
So I told her my plan. "You need to help me come up with a good idea," I told her. She enthusiastically agreed.
"So what subject should I write about? What kind of books do you like?"
She assumed her thoughtful look. "Well," she began slowly, "I like books that have pictures."
Great. I'll get going on that picture book.
Showing posts with label Aliza. Show all posts
Showing posts with label Aliza. Show all posts
Monday, March 18, 2013
Friday, February 01, 2013
Ups and Downs
Zack is having some downs. It seems like it started around Christmas. The screaming that virtually ended when we got the Arbaclofen (STX209 drug trial medication) dosage adjusted for him? It's back. He's making me crazy, and it's not even summer - he's gone most of the day. I get quiet a lot of the time. But that scream he does - it shreds my last nerve.
So obviously, something is bothering him. The question is, what? How do we find out, when he can't express himself any better than to tell me he wants "zoomi" (Team Umizoomi) or "juice" or "Comb" (Honeycomb) or "bed" (when he's ready to go to bed). (We do encourage him to speak in full sentences and he can, when prompted. But on his own, prompted by only his own desires, he speaks as few words as possible.)
So we look at what has changed in his life recently. He has gained quite a bit of weight in the last year. He outweighs AJ by 17 pounds. Zack is a strong, thick kid, and AJ is scrawny. Sometime I'll try to get a photo of them together without their shirts on, so you can see the difference in their chests and arms.
I'm not sure what else has changed. Zack has a lifelong history of needing a little more than AJ does. He's always needed a higher dose of the same meds. So it wouldn't be entirely out of range for him to need a change, when AJ does not.
For right now, we are going to try giving Zack his second Arbaclofen dose immediately after school. We are hoping that changing the time of day he receives it will be enough to help him level out his behaviors, and feel better. I don't have high hopes of that working, but I also don't want to increase any medication if we can at all help it.
Aliza has been having some extreme anxiety. Last night, after an hour and a half of dance and an hour of basketball, she realized she'd forgotten her poetry homework at school, and she had a meltdown. She shocked me, really. She suddenly bent over like she'd been punched in the stomach, ands began to cry and cry.
Some nights are busy. It's not that we keep her too busy running from activity to activity. Wednesday night she had nothing at all to do. Tonight her schedule is free. I think it's the way it is for all of us - adults and kids. It's normal to be busy some days and less so on others.
But last night - wow.
Somehow we talked her off the ledge and she cried herself to sleep. I emailed her teacher just to let him know what was happening. I don't expect special treatment for her. If her homework isn't done, she needs to suffer the same consequences as the other kids would. But I did want him to know what a basket case she was, over it. How bad she felt.
She is that proverbial child I can brag about - she plays basketball and dances several times a week, all while maintaining almost straight "A"s - and would, were it not for the fact that I have special needs children who don't accomplish anywhere near as much, and I know how it is on both sides of this fence. Special needs moms don't like to hear bragging about brilliant children. At least, this one doesn't. It makes me think wow, how sheltered and wonderful your existence is. Good for you.
Where did this perfectionist child come from? Not me. Not Mark (no offense meant. He's just more laid back than she is).
So obviously, something is bothering him. The question is, what? How do we find out, when he can't express himself any better than to tell me he wants "zoomi" (Team Umizoomi) or "juice" or "Comb" (Honeycomb) or "bed" (when he's ready to go to bed). (We do encourage him to speak in full sentences and he can, when prompted. But on his own, prompted by only his own desires, he speaks as few words as possible.)
So we look at what has changed in his life recently. He has gained quite a bit of weight in the last year. He outweighs AJ by 17 pounds. Zack is a strong, thick kid, and AJ is scrawny. Sometime I'll try to get a photo of them together without their shirts on, so you can see the difference in their chests and arms.
I'm not sure what else has changed. Zack has a lifelong history of needing a little more than AJ does. He's always needed a higher dose of the same meds. So it wouldn't be entirely out of range for him to need a change, when AJ does not.
For right now, we are going to try giving Zack his second Arbaclofen dose immediately after school. We are hoping that changing the time of day he receives it will be enough to help him level out his behaviors, and feel better. I don't have high hopes of that working, but I also don't want to increase any medication if we can at all help it.
Aliza has been having some extreme anxiety. Last night, after an hour and a half of dance and an hour of basketball, she realized she'd forgotten her poetry homework at school, and she had a meltdown. She shocked me, really. She suddenly bent over like she'd been punched in the stomach, ands began to cry and cry.
Some nights are busy. It's not that we keep her too busy running from activity to activity. Wednesday night she had nothing at all to do. Tonight her schedule is free. I think it's the way it is for all of us - adults and kids. It's normal to be busy some days and less so on others.
But last night - wow.
Somehow we talked her off the ledge and she cried herself to sleep. I emailed her teacher just to let him know what was happening. I don't expect special treatment for her. If her homework isn't done, she needs to suffer the same consequences as the other kids would. But I did want him to know what a basket case she was, over it. How bad she felt.
She is that proverbial child I can brag about - she plays basketball and dances several times a week, all while maintaining almost straight "A"s - and would, were it not for the fact that I have special needs children who don't accomplish anywhere near as much, and I know how it is on both sides of this fence. Special needs moms don't like to hear bragging about brilliant children. At least, this one doesn't. It makes me think wow, how sheltered and wonderful your existence is. Good for you.
Where did this perfectionist child come from? Not me. Not Mark (no offense meant. He's just more laid back than she is).
Monday, January 21, 2013
10
10 years ago, back when Aliza was a just a little blob of pinkish flesh, we were so unsure of ourselves.
You assume when you are expecting, because you've read Drs. Spock and Sears, that you'll know what to do and you won't have any trouble keeping your baby alive. Then, they pop out and you see their little noses, breathing in air for the first time, and you marvel at the miracle that this little blob of flesh just knows what to do, to survive. You watch them in wonderment, as they start doing all the things humans need to do, just by instinct. You see the fragility of this life you are now responsible for, 24/7/365, for-the-rest-of-your-life. You wonder whether you are up to the task.
We wondered whether we would ever have the nerve to stick a thermometer in her butt.
It's just awe inspiring, to look at a baby face and know the girl she has grown into. Look at that little happy grin. This was 10 years ago now. Forever ago and at the same time, the blink of an eye.
I remember looking into her eyes when she was an infant, wondering at the child she'd become. The person.
I don't know for sure how other parents feel, but we've never stopped marveling about that.
(Sorry for the blurry, distant shots. My phone tries its best, and so does my good camera.)
And that is about all the reflection I have time for today. Aliza has transitioned smoothly to double digits.
Monday, November 26, 2012
What Aliza's Thankful For
In school, Aliza has to write a letter to us every week. We have to write back (yep, I get homework in 4th grade). This past week they had to write about what they are thankful for. I read her letter tonight and ... well, here it is. I swear, this is what she wrote, word for word.
Dear Mom & Dad,
I am thankful for a loving family. I'm also really, really thankful for my brothers with Fragile X because even though they sometimes won't let me have the TV or if Zack pinches me, well, we get to go to parks more often, and I always have someone to play with. And AJ's really funny when he sings songs, I like "Hold Still" and "Happy Birthday" the best. Zack sometimes isn't the nicest but he is really a sweet kid most of the time, and they get along most of the time pretty well unless it's fighting over the iPads.
It's so sweet, I almost can't stand it!
It goes without saying that Aliza's relationship with her brothers is unconventional.
Aliza's brothers can't fight with her, the way little brothers would normally fight with a big sister. They can't switch places on her and pretend to be each other, the way I thought they might, when we first found out we were expecting identical twins.
There are some things they do that typical little brothers do. They take and break her stuff. Zack pinches her, and even though she knows that it's a part of his disability to lash out physically, once in a while she gets mad and hits or pinches him back. I don't get on her case for it too much. I mean, Zack knows he shouldn't do it, and he needs to learn to control his impulses. And I'm not going to tell her she has to sit back and just take abuse from him.
Mostly, though, since the boys have limited communication skills, she takes cues from us - mom and dad - in learning how to behave with her brothers. So she's rather parental toward them. She praises them when they do something correctly. She encourages them to hug her, and I've seen her give AJ kisses on the top of his head. She helps me get their jackets and socks and shoes on them when we're
getting ready to go out.
Yep, it's very, very different from other siblings relationships with each other. And sometimes that worries me; that she might be missing out on something. But I know that everyone's growing-up experience is different, and different doesn't mean bad.
And she obviously isn't unhappy about her situation. She loves her brothers so much.
After I read her letter I asked her if she minded if I wrote about it and posted it on my blog; she didn't hesitate.
"Sure," she said. "Can I have a piece of pie now?"
Dear Mom & Dad,
I am thankful for a loving family. I'm also really, really thankful for my brothers with Fragile X because even though they sometimes won't let me have the TV or if Zack pinches me, well, we get to go to parks more often, and I always have someone to play with. And AJ's really funny when he sings songs, I like "Hold Still" and "Happy Birthday" the best. Zack sometimes isn't the nicest but he is really a sweet kid most of the time, and they get along most of the time pretty well unless it's fighting over the iPads.
It's so sweet, I almost can't stand it!
It goes without saying that Aliza's relationship with her brothers is unconventional.
Aliza's brothers can't fight with her, the way little brothers would normally fight with a big sister. They can't switch places on her and pretend to be each other, the way I thought they might, when we first found out we were expecting identical twins.
There are some things they do that typical little brothers do. They take and break her stuff. Zack pinches her, and even though she knows that it's a part of his disability to lash out physically, once in a while she gets mad and hits or pinches him back. I don't get on her case for it too much. I mean, Zack knows he shouldn't do it, and he needs to learn to control his impulses. And I'm not going to tell her she has to sit back and just take abuse from him.
Mostly, though, since the boys have limited communication skills, she takes cues from us - mom and dad - in learning how to behave with her brothers. So she's rather parental toward them. She praises them when they do something correctly. She encourages them to hug her, and I've seen her give AJ kisses on the top of his head. She helps me get their jackets and socks and shoes on them when we're
getting ready to go out.
Yep, it's very, very different from other siblings relationships with each other. And sometimes that worries me; that she might be missing out on something. But I know that everyone's growing-up experience is different, and different doesn't mean bad.
And she obviously isn't unhappy about her situation. She loves her brothers so much.
After I read her letter I asked her if she minded if I wrote about it and posted it on my blog; she didn't hesitate.
"Sure," she said. "Can I have a piece of pie now?"
Monday, November 12, 2012
Aliza off the deep end
Well, I just put Aliza to bed. It took around 20 minutes longer than normal. It's because in the morning, her dad, brothers and I leave for Chicago and she'll be staying here with Grandpa. She'll have a grand time. He'll take her out to eat and shopping and probably spoil her. She'll get to have way more fun and freedom than she gets with all of us here.
But being separated from us causes her great anxiety and I can't help but think, as I watch her sobbing and hysterical over the possibility that she might have a nightmare while I'm gone and grandpa won't know how to help her - just one of the many "what ifs" we've entertained in the last half hour - that it's too much. This is beyond normal anxiety.
She piles one thing on top of another. There's also the fact that grandpa might not be able to help her with her homework, even though I tried to convince her that her grandpa is probably smarter than her dad and I both (sorry, hon). Then there's this book report. She has to do one every week, and having to completely finish a whole chapter book and answer pages and pages of questions about that book, every single week, is pretty overwhelming for her. I told her once if she didn't like a book that it was okay to put it aside and start another one, to sort of take the pressure off, but now she can't find any book she cares enough about to finish at all.
She has a lot of homework anxiety. Getting it all done and done right is important to her. Little Type A kid.
If she has time to think about it, there's a million little things I help her with that she worried about handling, while I'm gone. And no amount of promises of presents brought back from our trip, or assurances that I will call her several times, makes her feel better.
And this hysteria happens every time we go to Chicago without her. If her dad stays home with her it's a little better, because he knows her routine. But if neither of us is there, she goes off the deep end. Tonight I told her that tomorrow after school maybe grandpa could take her to a bookstore so she could look for a new book to do this week's report on, and she burst into tears and cried "I don't want tomorrow to come!"
Is all this normal anxiety? Or is this Fragile X carrier anxiety?
But being separated from us causes her great anxiety and I can't help but think, as I watch her sobbing and hysterical over the possibility that she might have a nightmare while I'm gone and grandpa won't know how to help her - just one of the many "what ifs" we've entertained in the last half hour - that it's too much. This is beyond normal anxiety.
She piles one thing on top of another. There's also the fact that grandpa might not be able to help her with her homework, even though I tried to convince her that her grandpa is probably smarter than her dad and I both (sorry, hon). Then there's this book report. She has to do one every week, and having to completely finish a whole chapter book and answer pages and pages of questions about that book, every single week, is pretty overwhelming for her. I told her once if she didn't like a book that it was okay to put it aside and start another one, to sort of take the pressure off, but now she can't find any book she cares enough about to finish at all.
She has a lot of homework anxiety. Getting it all done and done right is important to her. Little Type A kid.
If she has time to think about it, there's a million little things I help her with that she worried about handling, while I'm gone. And no amount of promises of presents brought back from our trip, or assurances that I will call her several times, makes her feel better.
And this hysteria happens every time we go to Chicago without her. If her dad stays home with her it's a little better, because he knows her routine. But if neither of us is there, she goes off the deep end. Tonight I told her that tomorrow after school maybe grandpa could take her to a bookstore so she could look for a new book to do this week's report on, and she burst into tears and cried "I don't want tomorrow to come!"
Is all this normal anxiety? Or is this Fragile X carrier anxiety?
Monday, August 20, 2012
She Says the Darndest Things
Remember that show "Kids Say the Darndest Things" with Art Linkletter, where he'd interview kids and they'd all say outrageous, hilarious things? The best was when they'd say something that you knew had to embarrass their parents.
If you don't remember it, it's because that show is from back when there was no color in the world and everything was in black and white and tones of gray, as evidenced by the black and white pictures and movies and TV shows. You know what I'm talking about.
Sometimes I email funny stories about the kids to my mom, and she in turn sends them in to the editor of the Bulletin Board column in the St. Paul Pioneer Press. Bulletin Board is a collection of random human interest stories, sent in by readers. Both these stories about Aliza recently made it into print.
A couple of weeks ago I was putting away clothes, and I brought a pile into Aliza's room for her to put away. I take them out of her room, wash, dry, and sort. All she has to do is hang them up or stuff them into a drawer. I really don't think I'm overworking her here, but feel free to disagree.
I went in a few minutes later to check on her progress and she is only on her second or third shirt, sighing heavily. "It's like yesterday was my last day as a kid," she declares.
"Why is that?" I ask, I must admit unsympathetically.
"Because I'm having to hang up my own clothes."
The second story occurred just about a week ago. Aliza and I were headed out to the American Girl Bistro for dinner, just her and I. It wouldn't have been my first choice, but I let her pick. I was intending to tell her about her premutation carrier status. I found out actually a couple of years back that she is a carrier of the Fragile X gene, but I hadn't told her yet. I took some time to deal with that this meant for her future, and at the International Fragile X Conference last month, I decided I really needed to have this talk with her. She is old enough to understand and I was beginning to feel like I was keeping something from her.
So I planned for a mother-daughter dinner, and allowed her to pick her favorite restaurant. She likes the American Girl Bistro because you can bring your doll along and she sits at the table and has a tiny, doll-sized meal and drink and dessert right along with you. It's adorable.
Anyway we left the house distractly, and realized halfway to the Mall of America that we had forgotten to bring along one of her dolls. She looked like she was going to have a breakdown. I did an internal eye roll. Oh good grief. Was this going to overshadow our whole meal and chat?
Then I remembered something. "You know, you can borrow a doll there, to sit at the table and have dinner with us."
It's true. They have a whole shelf full of dolls in little pink highchairs that you can pick from.
Aliza looked doubtful. "Well, it'll be weird, having dinner with a doll I don't know," she replied.
So she and I took a stranger doll out for a blind date.
And our talk, about her carrier status? Completely uneventful. It was literally about 90 seconds of our whole hour and a half dinner conversation. She wanted to know what it meant, and I told her that right now really, it didn't mean anything. I told her when she's older it could mean that she'd have kids with Fragile X too. And she shrugged her shoulders at that. I am raising a child who, so far, thinks that having a kid with Fragile X is not a big deal.
Going to have to think about that one.
If you don't remember it, it's because that show is from back when there was no color in the world and everything was in black and white and tones of gray, as evidenced by the black and white pictures and movies and TV shows. You know what I'm talking about.
Sometimes I email funny stories about the kids to my mom, and she in turn sends them in to the editor of the Bulletin Board column in the St. Paul Pioneer Press. Bulletin Board is a collection of random human interest stories, sent in by readers. Both these stories about Aliza recently made it into print.
A couple of weeks ago I was putting away clothes, and I brought a pile into Aliza's room for her to put away. I take them out of her room, wash, dry, and sort. All she has to do is hang them up or stuff them into a drawer. I really don't think I'm overworking her here, but feel free to disagree.
I went in a few minutes later to check on her progress and she is only on her second or third shirt, sighing heavily. "It's like yesterday was my last day as a kid," she declares.
"Why is that?" I ask, I must admit unsympathetically.
"Because I'm having to hang up my own clothes."
![]() |
At NASA, last June. |
The second story occurred just about a week ago. Aliza and I were headed out to the American Girl Bistro for dinner, just her and I. It wouldn't have been my first choice, but I let her pick. I was intending to tell her about her premutation carrier status. I found out actually a couple of years back that she is a carrier of the Fragile X gene, but I hadn't told her yet. I took some time to deal with that this meant for her future, and at the International Fragile X Conference last month, I decided I really needed to have this talk with her. She is old enough to understand and I was beginning to feel like I was keeping something from her.
So I planned for a mother-daughter dinner, and allowed her to pick her favorite restaurant. She likes the American Girl Bistro because you can bring your doll along and she sits at the table and has a tiny, doll-sized meal and drink and dessert right along with you. It's adorable.
Anyway we left the house distractly, and realized halfway to the Mall of America that we had forgotten to bring along one of her dolls. She looked like she was going to have a breakdown. I did an internal eye roll. Oh good grief. Was this going to overshadow our whole meal and chat?
Then I remembered something. "You know, you can borrow a doll there, to sit at the table and have dinner with us."
It's true. They have a whole shelf full of dolls in little pink highchairs that you can pick from.
Aliza looked doubtful. "Well, it'll be weird, having dinner with a doll I don't know," she replied.
So she and I took a stranger doll out for a blind date.
And our talk, about her carrier status? Completely uneventful. It was literally about 90 seconds of our whole hour and a half dinner conversation. She wanted to know what it meant, and I told her that right now really, it didn't mean anything. I told her when she's older it could mean that she'd have kids with Fragile X too. And she shrugged her shoulders at that. I am raising a child who, so far, thinks that having a kid with Fragile X is not a big deal.
Going to have to think about that one.
Thursday, April 26, 2012
What does it feel like to have Fragile X?
A couple of weeks ago, while Mark and the boys and I were in Chicago, Grandma and Grandpa stayed home with Aliza. As is our usual routine, whoever stays home with Aliza takes advantage of the time alone with her to do lots of special things. This time, one of those special things was to take her out to lunch at the American Girl Bistro in the Mall of America.
To prompt conversation while waiting for your meals to arrive, they have questions on cards at every table. One of the questions at the table my parents and Aliza sat at was,
"If you could trade places with anyone for 30 days, who would it be, and why?"
Aliza pondered it for a few moments, and replied that she'd like to trade places with AJ.
"To see what it feels like to have Fragile X."
There she goes again - blowing me away with her incredible attitude and sensitivity.
I almost can't stand how amazing she is. She doesn't want to be a movie star or a rock star, or a super rich person. She wants to know what life feels like for her brothers.
She slays me.
To prompt conversation while waiting for your meals to arrive, they have questions on cards at every table. One of the questions at the table my parents and Aliza sat at was,
"If you could trade places with anyone for 30 days, who would it be, and why?"
Aliza pondered it for a few moments, and replied that she'd like to trade places with AJ.
"To see what it feels like to have Fragile X."
There she goes again - blowing me away with her incredible attitude and sensitivity.
I almost can't stand how amazing she is. She doesn't want to be a movie star or a rock star, or a super rich person. She wants to know what life feels like for her brothers.
She slays me.
Grandpa, Grandma, and all their grandkids. |
Thursday, October 20, 2011
A Side Effect of STX209?
Could a penchant for women's clothing be a side effect to the trial medication? Zack has developed quite an attachment to his sister's pink butterfly shirt.
(I'm kidding of course. Zack has always had a weird attachment to this shirt. Remember this day at the park, when he was loving all over Aliza because she was wearing it?)
You know what? I'm perfectly fine with him wearing it. Because with the pink butterfly shirt, he's calming sitting under the table. Not screaming. Not biting his brother.
Yesterday the pink butterfly shirt was in the wash, and the two of them were like squirrels on crack. I have no idea what the deal was. I swear they were running up the walls and across the ceiling. So today, if one of them requires a girly shirt to sit down and stay calm, I'm going to be a-okay with that.
Otherwise, the three of them are spending quite a bit of their time off this week (parent-teacher conferences and MEA) doing this.
I don't think we are noticing any positive changes from the trial drug yet. Maybe AJ talks a little bit more. Maybe Zack has been a little bit better in public. If I were looking hard, that's what I'd see so far. But I'd also see that both of them, in particular AJ, have been chewing more. AJ goes through two or three shirts a day because he chews on the sleeves until they are soaked up to the elbows. Chewing is a manifestation of anxiety.
We leave for our third trip to Chicago this weekend.
(I'm kidding of course. Zack has always had a weird attachment to this shirt. Remember this day at the park, when he was loving all over Aliza because she was wearing it?)
You know what? I'm perfectly fine with him wearing it. Because with the pink butterfly shirt, he's calming sitting under the table. Not screaming. Not biting his brother.
Yesterday the pink butterfly shirt was in the wash, and the two of them were like squirrels on crack. I have no idea what the deal was. I swear they were running up the walls and across the ceiling. So today, if one of them requires a girly shirt to sit down and stay calm, I'm going to be a-okay with that.
Otherwise, the three of them are spending quite a bit of their time off this week (parent-teacher conferences and MEA) doing this.
I don't think we are noticing any positive changes from the trial drug yet. Maybe AJ talks a little bit more. Maybe Zack has been a little bit better in public. If I were looking hard, that's what I'd see so far. But I'd also see that both of them, in particular AJ, have been chewing more. AJ goes through two or three shirts a day because he chews on the sleeves until they are soaked up to the elbows. Chewing is a manifestation of anxiety.
We leave for our third trip to Chicago this weekend.
I don't care what any of you say. I think I look GOOD. |
Saturday, October 01, 2011
Special Needs Siblings
Today I'm proud to be featured at The Squashed Bologna, an awesome special needs blog. I never miss her weekly feature, Special Needs Sibling Saturdays.
Anyone who reads The Fragile X Files knows how great a big sister Aliza is. Special Needs Sibling Saturdays gave me the opportunity to not only spread more awareness about Fragile X, but to talk about my fabulous daughter.
I'm so touched by what Varda wrote about us, and the title she gave our post - she called it "Fragile Brothers, Strong Sister." How outrageously sweet is that? I love that title!
I don't feel like this post is my best, though. There have been a lot of distractions this week. First of all I started writing the post for SNSS a month ago, and my draft is on the dead computer. I remembered what I'd written, more or less, so I started over, but it felt rushed.
I hope that, despite the PC issues and a nagging headcold, I was able to express my joy and wonder at my sweet Aliza.
Anyone who reads The Fragile X Files knows how great a big sister Aliza is. Special Needs Sibling Saturdays gave me the opportunity to not only spread more awareness about Fragile X, but to talk about my fabulous daughter.
I'm so touched by what Varda wrote about us, and the title she gave our post - she called it "Fragile Brothers, Strong Sister." How outrageously sweet is that? I love that title!
I don't feel like this post is my best, though. There have been a lot of distractions this week. First of all I started writing the post for SNSS a month ago, and my draft is on the dead computer. I remembered what I'd written, more or less, so I started over, but it felt rushed.
I hope that, despite the PC issues and a nagging headcold, I was able to express my joy and wonder at my sweet Aliza.
Wednesday, July 06, 2011
I wish everybody in the whole world was just like her.
We've been pretty tired from the busy weekend, so we have been hanging out at home the past couple of days. Aliza made a fort in the living room with four dining room chairs and a pile of blankets. She put toys and books and the boys' fun folders and puzzles inside. It was great fun for them all.
Aliza is such a wonderful playmate for Zack and AJ. She knows what they like and will respond to, but then she introduces aspects of playing that might be new to them, too. She loves drawing them out of their video-watching shells and getting them to interact with her.
I wish the whole world worked as hard as she does to get them to belong.
I wish every child growing up with a disability had a sibling just like her. Someone to be their sidekick, and know them intimately. Someone who gets them and can help introduce them to the rest of the world, and maybe even more importantly, introduce the rest of the world to them. She is great for bridging that gap between the expectations kids have of how other kids will behave, and how MY kids behave.
You might say, they need a Sancho Panza. Somebody to be their ever-faithful companions, and to help keep them out of trouble. (I just recently decided I need to read Don Quixote again. I read it in college in Spanish - i.e., I didn't really get it.)
... but they were still drawn to the TV like moths to a flame. |
Aliza is such a wonderful playmate for Zack and AJ. She knows what they like and will respond to, but then she introduces aspects of playing that might be new to them, too. She loves drawing them out of their video-watching shells and getting them to interact with her.
I wish the whole world worked as hard as she does to get them to belong.
I wish every child growing up with a disability had a sibling just like her. Someone to be their sidekick, and know them intimately. Someone who gets them and can help introduce them to the rest of the world, and maybe even more importantly, introduce the rest of the world to them. She is great for bridging that gap between the expectations kids have of how other kids will behave, and how MY kids behave.
You might say, they need a Sancho Panza. Somebody to be their ever-faithful companions, and to help keep them out of trouble. (I just recently decided I need to read Don Quixote again. I read it in college in Spanish - i.e., I didn't really get it.)
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Who, us? We weren't doing anything. |
Tuesday, June 07, 2011
Body Issues, at the Tender Age of 8
Aliza and I were sitting outside the other night in the backyard, making a fire in the firebowl, just her and I, chatting and laughing and relaxing. And I kept thinking about how pretty she is. I ran inside to get my camera and snapped some quick shots of her, but I can't capture it. The green eyes, the freckles, the unruly, wavy hair. I can capture her personality well in pictures, but for some reason I don't think they show how pretty she is.
I'm worried a lot right now about her self image. Up until this spring, she's been blissfully unself-conscious. She flitted around the neighborhood in shorts and tank tops every summer (and sometimes just a swimsuit), and she was a totally carefree, sunny, happy-go-lucky little girl. I knew that wouldn't last forever, but I'd hoped to continue it for a more years. I think it might be over now, at age 8.
She's so much pickier lately, about what she wears. She won't wear shorts to school, she told me she's just going to wear long pants or capris. I don't get it. Everyone else wears shorts. Her classroom isn't air-conditioned. A few times, if she thinks the shirt she's wearing is too tight or too short, she'll keep her jacket all day. That can't be comfortable.
Last Thursday was "dress like a friend" day, and Aliza and her friend Sophie decided to dress in all red, from head to toe. Aliza has red pants, that's easy. Finding a shirt was tougher because all her red shirts were too small, she decided. She definitely won't wear anything that, if she raises her arms above her head, shows her tummy. But even the longer shirts are too snug. She doesn't like anything body-hugging, and right now, that's the style in women's and girl's t-shirts -- go shopping check for yourself. All the t-shirts for women are tapered and meant to fit like a second skin. I don't like it any more than she does, and she probably knows that.
So I tried to show her how to stretch out a shirt a little, if she thinks it's too tight, but it wasn't working well enough for her and at one point she looked down, almost in tears saying "I'll just wear my jacket over it." It breaks my heart.
I'd like to blame society for this, at least in part. It isn't just the ads for adults that she happens to see. It's the cartoons, too. Just the other day I walked in on her watching an episode of Phineas and Ferb that had their sister Candace looking at a magazine called "Flawless Girl," and saying she is so glad she has that magazine to show her what clothes to wear, and how to fix her hair. I don't want my 8 year old thinking about trying to be a "flawless girl."
This video does a great job of showing you outwardly what the ads we see are telling our subconscious.
I guess all I can do is try hard to give her confidence in herself. Make sure she eats healthy, gets lots of exercise but doesn't see it as exercise, and knows she is a smart, fun, and gorgeous little kid.
Nobody told me I was going to have to worry about things like this as a parent. So much of my worrying is taken up by the boys. I guess I'll have to reserve some of my worry quota for my daughter too.
I'm worried a lot right now about her self image. Up until this spring, she's been blissfully unself-conscious. She flitted around the neighborhood in shorts and tank tops every summer (and sometimes just a swimsuit), and she was a totally carefree, sunny, happy-go-lucky little girl. I knew that wouldn't last forever, but I'd hoped to continue it for a more years. I think it might be over now, at age 8.
She's so much pickier lately, about what she wears. She won't wear shorts to school, she told me she's just going to wear long pants or capris. I don't get it. Everyone else wears shorts. Her classroom isn't air-conditioned. A few times, if she thinks the shirt she's wearing is too tight or too short, she'll keep her jacket all day. That can't be comfortable.
This smile makes me think of my cousin Andrea. |
So I tried to show her how to stretch out a shirt a little, if she thinks it's too tight, but it wasn't working well enough for her and at one point she looked down, almost in tears saying "I'll just wear my jacket over it." It breaks my heart.
I'd like to blame society for this, at least in part. It isn't just the ads for adults that she happens to see. It's the cartoons, too. Just the other day I walked in on her watching an episode of Phineas and Ferb that had their sister Candace looking at a magazine called "Flawless Girl," and saying she is so glad she has that magazine to show her what clothes to wear, and how to fix her hair. I don't want my 8 year old thinking about trying to be a "flawless girl."
This video does a great job of showing you outwardly what the ads we see are telling our subconscious.
I guess all I can do is try hard to give her confidence in herself. Make sure she eats healthy, gets lots of exercise but doesn't see it as exercise, and knows she is a smart, fun, and gorgeous little kid.
Nobody told me I was going to have to worry about things like this as a parent. So much of my worrying is taken up by the boys. I guess I'll have to reserve some of my worry quota for my daughter too.
Monday, March 14, 2011
That's my girl
Mark was raised Catholic. I was raised Lutheran. We are still working out the details, but so far, that makes our family Lutheric. Or Catheran. Whatever.
Our kids have gotten a taste of both. Some Sundays we go to a Catholic church Mark chose; some Sundays we go to a Lutheran church I chose. The boys don't care which one we go to, they like all the crying rooms, lobbys and parking lots the same. That's where they end up spending most of their time.
Aliza has attended Sunday school at the Lutheran church. She went to vacation bible school at a Lutheran, a Baptist, and a nondenominational church. I think she liked the Baptist one best because they had a carnival theme. That's my girl.*
*This is a little inside joke between Mark and me. Whenever one of the kids does something that makes us proud, we claim ownership. ("That's my girl."). Whenever they do something undesirable, we pass ownership ("That's your girl.").
Our kids have gotten a taste of both. Some Sundays we go to a Catholic church Mark chose; some Sundays we go to a Lutheran church I chose. The boys don't care which one we go to, they like all the crying rooms, lobbys and parking lots the same. That's where they end up spending most of their time.
Aliza has attended Sunday school at the Lutheran church. She went to vacation bible school at a Lutheran, a Baptist, and a nondenominational church. I think she liked the Baptist one best because they had a carnival theme. That's my girl.*
So right now, Aliza is attending religious education classes at the Catholic church. She is learning about the Apostle's Creed, or as it's known to the Catholics, the "our Father." She's learning about communion. And soon she'll have her first confession. Yesterday she asked us what that was all about.
"Well, you'll go talk to the priest and tell him all your sins, and he'll absolve you of them," Mark told her.
I mentally prepared for questions about what "absolve" means. Or questions about what exactly she should tell him.
"Wow......I have a LOOOOT of sins," Aliza replied.
That's Mark's girl.
*This is a little inside joke between Mark and me. Whenever one of the kids does something that makes us proud, we claim ownership. ("That's my girl."). Whenever they do something undesirable, we pass ownership ("That's your girl.").
Monday, February 07, 2011
She will make such a great therapist some day!
I don't want to put too many videos out here because I think they are time-consuming to watch, and my hope is for my blog to be something you never, ever get bored with. And I know a video that drags on and on can get, well, long, and your attention will wander.
But I also think that seeing the boys live is the best way to see them as themselves. I can write about how they act and how they talk and how they behave for years and not get through to you exactly what they are like in person at all the way a 1-minute video can.
So maybe if I set it up for you it won't be boring; Aliza is "working" with AJ here. In the beginning she's reading him a Dora book. Zack is just hanging out with them. Then the timer goes off, which AJ knows means it's time to get back to work so he runs over to shut it off, and then Aliza gets him to sit down and say something very cute, that Grandpa will love. *smile*
Check it out.

Wednesday, December 01, 2010
Smarts
This morning while eating breakfast, Aliza says:
"No," she said, her mouth full of cereal. "The back of the Froot Loops box."
"Mom, did you know the average Toucan bill is seven and a half inches long?"
"Really?" I replied, thinking, wow! What an excellent school I send her to (nevermind the fact that it's our neighborhood school and I didn't pick it, we just got lucky) and how great she's doing there, learning interesting facts about exotic animals, and being excited enough to come home and tell me about it the next day.
"Did you learn that in science?"
Tuesday, October 12, 2010
Sorry I'm late. It's my mom's fault.
Aliza was tardy today. I hate that word. It sounds so much more obscene than just saying "late."
She forgot her homework at school yesterday so I thought there was nothing for her to do last night. But I forgot about the weekly spelling.
She is supposed to work on her spelling words every night. I knew it, but I didn't realize that is actually homework she is required to turn in. I thought it was just a friendly, helpful suggestion. If she doesn't do her spelling homework, she has to stay in during recess and do it. She enlightened me with this information this morning.
So this morning at the moment we are putting on shoes and jackets, she discovers we (and I say "we", because it's my job to help her remember to do homework, right?) forgot to do her spelling work. Today it's word pyramids. You know, like this:
She whips out 10 word pyramids. Then we look for shoes when suddenly she looks up and says "I can't wear jeans today. We have gym and I can't run in jeans." Which makes very little sense when I've seen her run in jeans plenty of times, I know it is possible....but arguing will take more time than changing. So I find her some decent stretchy pants.
Do you think after this we could put on a pair of nice and easy slip-on crocs? Of course not! Tennis shoes, whose laces have to be loosened, then tightened again, then tied in double knots. Easily a 4-minute effort.
We drive to school and I warn her I'm going to have to walk her in to the office because we are running late. I avoid using the word "tardy." It upsets us both. I'm keenly aware that I haven't done my hair or makeup yet today and now I'm going to walk into the school office and see real people, but it can't be helped.
When we park and start to walk in to the school I quit worrying about my lack of neatened hair or made-up face, because I'm pretty sure my neon-green house shoes are going to draw more attention than anything else I might have going on.
It can only get better from here, right?
(This whole post is just an excuse to use these cool sticky notes I found at http://wigflip.com/superstickies/.)
Saturday, October 02, 2010
Roses Are Red
A lot of our best conversations happen in the car. Shut away from the rest of the world, watching it blur by through the windows as we head off to our destination, the mind is free to wander.
Last week one afternoon, in the car on the way to a PTO event, Aliza tells me "I know a poem. Want to hear it?"
"Of course," I said.
"Roses are red; violets are blue," She says, with a long pause. "I am nice and so are you."
I smiled to myself and said "that's a great poem."
Aliza says "I know, it really is. I wonder who wrote that?"
I wonder indeed. So like a good techie generation girl, I googled it. In case you are wondering too, here's the history of that famous poem.
Children teach us to wonder things it would never have occurred to us to wonder, don't they?
Last week one afternoon, in the car on the way to a PTO event, Aliza tells me "I know a poem. Want to hear it?"
"Of course," I said.
"Roses are red; violets are blue," She says, with a long pause. "I am nice and so are you."
I smiled to myself and said "that's a great poem."
Aliza says "I know, it really is. I wonder who wrote that?"
I wonder indeed. So like a good techie generation girl, I googled it. In case you are wondering too, here's the history of that famous poem.
Children teach us to wonder things it would never have occurred to us to wonder, don't they?
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Aliza and her cousin Jocelyn |
Saturday, September 18, 2010
Today, it's really more like The Aliza Files
Aliza had a big week, this second week of school. Her dance class started on Monday. She dances in an enormous dance studio with an itty bitty window for all the moms to look through.
And last night, her parents finally relented and allowed her to get her ears pierced! She picked a lovely pair of sparkly flowers to wear for the next 6 weeks.
The sign announcing that ear piercing is FREE is huge. The price of the sparkly flowered earrings is very, very tiny.....but, well, this is kind of a rite of passage, right? You only get your ears pierced once in your life. Unless you let them grow shut, like I did.
And last night, her parents finally relented and allowed her to get her ears pierced! She picked a lovely pair of sparkly flowers to wear for the next 6 weeks.
The sign announcing that ear piercing is FREE is huge. The price of the sparkly flowered earrings is very, very tiny.....but, well, this is kind of a rite of passage, right? You only get your ears pierced once in your life. Unless you let them grow shut, like I did.
Saturday, August 21, 2010
Water Games that Baffle Me
Today Aliza and I played a game in the swimming hole at the state park. I had never played before, so she had to explain it all to me.
I was hesitant immediately when she told me it's called GIANT, and you guessed it -- I'm the giant.
Wonderful. Loving it already.
So it consists of me chasing her and trying to catch her while she screams and swims away from me. As I got close to her the first time she put her arms straight up in the air and yelled "T! I call a T!"
What's a T? Well apparently it means I can't touch her. Kind of like a time out, I guess. Oooookay.
So I teased her, jumping around her and acting like I was going to touch her while she had her arms up in the air. And she hollered "no puppy-guarding!"
What?
I told her I'm going to need a written set of rules with a glossary if we are to play this game again.
I was hesitant immediately when she told me it's called GIANT, and you guessed it -- I'm the giant.
Wonderful. Loving it already.
So it consists of me chasing her and trying to catch her while she screams and swims away from me. As I got close to her the first time she put her arms straight up in the air and yelled "T! I call a T!"
What's a T? Well apparently it means I can't touch her. Kind of like a time out, I guess. Oooookay.
So I teased her, jumping around her and acting like I was going to touch her while she had her arms up in the air. And she hollered "no puppy-guarding!"
What?
I told her I'm going to need a written set of rules with a glossary if we are to play this game again.
Monday, July 26, 2010
Vacation Bible School and Strangers
Aliza started Vacation Bible School today. A lady whose backyard backs up to our backyard is driving Aliza and several of the neighborhood kids to the Baptist church where apparently they have clowns, mini donuts, and a carnival on the last day.
When this lady first started talking about it last week, offering to drive the kids over there, I thought, sure. I let my kid get into a car with a total stranger at least once a week, why not? Then she started asking me pointed questions about the boys and how they were doing, and I realized, I'm supposed to know her. I don't recognize her, but apparently she knows me......but for the life of me I can't place her.
This happens a lot. Although usually said person acknowledges that I don't know them by saying something like "I know you don't know me, but I know your boys from....."
Then later Aliza tells me the lady lives "where Honey lives." Oh, Honey. The little golden-colored poodle that lives behind us. Now, Honey I do recognize.
I should mention here too that it doesn't surprise me when Aliza knows neighbors that I don't know. A couple of weeks ago I met someone who moved into the cul-de-sac down the road from us about a year ago. After I introduced myself she immediately says, "oh, I know your daughter." Seems that she lives in what must be the coolest house on this street, because there's a swirly slide attached to their back deck. And when they were moving in, my nosy daughter happened by on her bike, noticed the slide, and marched right up to ask if she could have a go.
So she's off to Vacation Bible School now, and I'm going to go check my bible to see where mini donuts and clowns are mentioned. Must be New Testament.
When this lady first started talking about it last week, offering to drive the kids over there, I thought, sure. I let my kid get into a car with a total stranger at least once a week, why not? Then she started asking me pointed questions about the boys and how they were doing, and I realized, I'm supposed to know her. I don't recognize her, but apparently she knows me......but for the life of me I can't place her.
This happens a lot. Although usually said person acknowledges that I don't know them by saying something like "I know you don't know me, but I know your boys from....."
Then later Aliza tells me the lady lives "where Honey lives." Oh, Honey. The little golden-colored poodle that lives behind us. Now, Honey I do recognize.
I should mention here too that it doesn't surprise me when Aliza knows neighbors that I don't know. A couple of weeks ago I met someone who moved into the cul-de-sac down the road from us about a year ago. After I introduced myself she immediately says, "oh, I know your daughter." Seems that she lives in what must be the coolest house on this street, because there's a swirly slide attached to their back deck. And when they were moving in, my nosy daughter happened by on her bike, noticed the slide, and marched right up to ask if she could have a go.
So she's off to Vacation Bible School now, and I'm going to go check my bible to see where mini donuts and clowns are mentioned. Must be New Testament.
Tuesday, May 25, 2010
Neglecting Aliza
Aliza danced all over the living room Monday night for an hour, while watching Dancing With the Stars. Then it was bedtime, and she was suddenly afflicted with not one, but two sore feet. If you thought it wasn't possible to limp on both feet at once, you haven't met my daughter, the drama queen. Apparently, several hours earlier while playing outside with the neighbor kids, she'd "cracked something" in her foot. And the other foot, well, it bothers her from time to time, always right around bedtime. It's always something. She has some sort of Bedtime Pain and Ailment Not Otherwise Specified Syndrome.
She hobbled to the bathroom to brush her teeth and by then the pain was so unbearable, she was forced to crawl on her hands and knees to bed. She laid awake for over an hour, calling me every few minutes with updates on her anguish. I brought her an ice pack but somehow that just made it worse. She felt we should go straight to the doctor. I said well, if it was still bothering her in the morning, we'd talk about that.

It was still bothering her. She managed to talk me into letting her stay home for awhile and rest it. When the boys started therapy and I was free, we watched Alvin & the Chipmunks: The Squeakquel and then we colored in coloring books together.
I think she just wanted to spend quality time with me.
By 10:30 she was feeling much better and she agreed to go to school after lunch, arriving just in time for the all important lessons in gym class and recess.
I think over this long holiday weekend, Aliza and I might have to go do something fun together.
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