Today I gave my testimony at church, and I was scared to death. I was scared because there's a certain way that I believe others see me. I'm not sure how true this really is, but I figure that I look like someone who has their crap together. From the outside, to people who know present Lauren, I am a married mother of three who takes good care of her kids and is pretty white-bread. I know I come off a little left of June Cleaver, but I figure I look pretty put together.
And I like it.
I like thinking people look at me and see someone who is on the straight and narrow. I like thinking I come off as a soccer mom. I want people to think I'm righteous and good and such, even thought I know I'm really not. Sharing my brokenness scared the pants off of me because I didn't want to give up that feeling. Opening up about my past dredged up all sorts of feelings of shame and guilt and dirtiness and worthlessness. The only thing that made me go through with it was a knowledge that those feelings are not of the Lord. That those are the tools the darkness uses to keep us from doing what will set us free.
So today I told my church family about how totally screwed up I was before Christ was a part of my life, and how He protected me and waited for me all that time. I shared how He finally reached me, and how my life has been changed since I welcomed Him in. And you know what? They didn't throw me out.
For a while now I've harbored this secret belief that my story, my life, could have meaning if told to others. I've often thought that teen girls need to hear what I have to tell them. I've believed that maybe I could save some other girl a world of hurt and shame. In my head I've considered telling my story somehow, but when faced with actually telling my story I very nearly pussed out. Yet I find that, now that I've told it, I feel like I could tell it again. Maybe tell it better. Maybe get it to someone who needs to hear it. I don't know, maybe there's something of value in all the crap I went through for someone else.
This whole human experience is about sharing. It's about connection. We're all a part of one larger entity, wether we like it or not, and our experiences can benefit other people. At the end of the day, we're more alike than we are different and perhaps our similarity allows us to learn from and give to one another. Perhaps if more of us told our stories, and told them honestly, we could start to get away from all the crap that is making humanity so sick and distorted. Maybe we could start to believe in each other if we saw how similar we really are. Maybe we could start to truly value each other. And if we valued each other, then we could care for each other and if we cared for each other, then we could protect each other. And if the whole of humanity was vested in protecting each other, how different would this world be?
If we could be honest with each other, warts and all, we could begin to put things in their proper perspective. Maybe we could stop chasing the almighty dollar, or the next high, or the perfect mate, or a fancy car, or a bigger house, or a snazzier title. If we could be authentic, maybe we could give more lovingly. Perhaps we could love more readily. Maybe we could be more ready to give.
I swear, I'm not high. This sort of sounds like some hippy diatribe written under the influence of marijuana. I'm aware of that. I suppose I'm high on transparency, or wasted on opening up.
Sunday, April 29, 2012
Thursday, April 26, 2012
On Support Groups
So I don't actually belong to a support group yet, but it's not for lack of opportunity. I've noticed that it's pretty easy to find one. Technically, I'm a FB member of a group for parents whose kids have heart defects, but since I don't participate at all (Geri's heart problems trouble me the least and I just don't have the time or energy to connect in that area) and I'm pretty worthless to the rest of the group, I don't really count it. There's groups for adoption, groups for international adoption, there's the group at the Anchor Center, and I think one at the School for the Deaf and Blind. We used to belong to a sort of one for blended families (and technically we still belong and need it, but we haven't had time) and I even had a brief stint in a totally lame Alateen group when I was in high school and struggling with familial substance abuse.
I've been thinking about support groups a lot because a very lovely new friend whose daughter has autism mentioned the support group at her school. She made the comment "I need to figure out what I want from a support group. I what I'm really looking for is hope."
What a poignant observation, and it got me thinking. If I could populate my own dream support group, I think I'd be filling it with moms who have three kids, middle child adopted and visually impaired. They'd all be within three years age difference. They'd also have children who were 2, 5, 7, 10 and 15 years older than my kids, but the adoption would have taken place at the same age. In short, I'd fill it with older versions of myself and my family.
Really, when I go to a support group I want to peer into my currently murky future. I don't want a support group. I want a crystal ball.
We look for support groups because we are looking for hope in the form of a glimpse into the future. We come home from meetings and say things like "They went on a date! We can do that too!" or "I'm so glad to hear that surgery went well. Makes me less nervous about when our child has it." or "Ten years sober! I guess it really is possible."
We want to know in advance all the pitfalls we could be headed towards, all the speed bumps and delays we are cruising towards. We don't want to be surprised (except pleasantly, of course) and it feels like preparation when we listen to others tell their stories.
There's also a special comfort, I think, in being the source of advice for someone else. We want to share all the thing we have learned because we're proud of having figured them out. We want to save someone else the trouble, thereby making our small accomplishment larger by impacting lives outside our own family. Sometimes, to be perfectly honest, we want to brag a bit about how we figured it out on our own.
Then, of course, there's the simple pleasure of having someone understand your story without having to explain. Recently, a group of us parents at the Anchor Center got into a discussion of accepting that you can't cure your child and it was such an immense relief to have people just "get it" right off. It felt great to just be understood.
Perhaps that's why support groups are so attractive and enduring. When you start, you benefit from learning. When you are around a while, you benefit from teaching. All along, you enjoy the sense of belonging and fitting in. There's really not much time at which you feel that you are not getting something out of it (even in the form of giving back) and, if there is, you would call that a poor match and find another group.
The only downside is time management, really. Even among a group that understands your child's behavioral quirks, it's hard to pay attention and engage when you're trying to entertain a little one.
Of course, your group understands why you don't "just get a sitter." :)
I've been thinking about support groups a lot because a very lovely new friend whose daughter has autism mentioned the support group at her school. She made the comment "I need to figure out what I want from a support group. I what I'm really looking for is hope."
What a poignant observation, and it got me thinking. If I could populate my own dream support group, I think I'd be filling it with moms who have three kids, middle child adopted and visually impaired. They'd all be within three years age difference. They'd also have children who were 2, 5, 7, 10 and 15 years older than my kids, but the adoption would have taken place at the same age. In short, I'd fill it with older versions of myself and my family.
Really, when I go to a support group I want to peer into my currently murky future. I don't want a support group. I want a crystal ball.
We look for support groups because we are looking for hope in the form of a glimpse into the future. We come home from meetings and say things like "They went on a date! We can do that too!" or "I'm so glad to hear that surgery went well. Makes me less nervous about when our child has it." or "Ten years sober! I guess it really is possible."
 |
| This looks too much like a meeting for my taste... |
There's also a special comfort, I think, in being the source of advice for someone else. We want to share all the thing we have learned because we're proud of having figured them out. We want to save someone else the trouble, thereby making our small accomplishment larger by impacting lives outside our own family. Sometimes, to be perfectly honest, we want to brag a bit about how we figured it out on our own.
Then, of course, there's the simple pleasure of having someone understand your story without having to explain. Recently, a group of us parents at the Anchor Center got into a discussion of accepting that you can't cure your child and it was such an immense relief to have people just "get it" right off. It felt great to just be understood.
Perhaps that's why support groups are so attractive and enduring. When you start, you benefit from learning. When you are around a while, you benefit from teaching. All along, you enjoy the sense of belonging and fitting in. There's really not much time at which you feel that you are not getting something out of it (even in the form of giving back) and, if there is, you would call that a poor match and find another group.
| That's more like it |
Of course, your group understands why you don't "just get a sitter." :)
Wednesday, April 25, 2012
Venting and a Legit Question
We hired a close friend to put sod down in our yard. He's been working on it this week (with a friend of his helping) and we're paying them for their labor and providing supplies. The yard looks awesome so far, simply beautiful and I'm stoked about how it's coming out...
But I'm not stoked about how we are getting to this point. He's been pretty much totally unprofessional. He's talking about starting a landscaping business, and I'm concerned. Is this how he always works, or did he just figure that because we are friends he could relax and let it all hang out? He's been habitually late, tried to play hookey one day, overestimated the amount of sod he needed by A LOT so I purchased too much, the job that was supposed to take two days is now going into it's fourth day, since he has no license or truck I had to rent a trailer and spend all of Tuesday running around town picking up supplies for him, because he was late I had to unload a whole load of sod by myself, and I came home today and his kid was in my basement playing video games and no one had asked if it was okay that he even bring his kid to my house in the first place... sigh.
I'm torn. Nick and I agree that we're never hiring him for anything again. It's been too much stress. I pray to God he was just being liberal because he knows we're his friends, otherwise his business will fail in a heartbeat (and any future employment, too). If he asks us for a recommendation, I don't know what I'm going to say. Part of me feels like I should give him honest feedback, but part of me feels like there's no real point because I don't think he'll listen or take it seriously. I want to be straight with him, but I'm pretty chickenshit about it. I also feel like I probably should have said something right away (after day one) instead of pretending it was allright. But what was I supposed to do? I was afraid he'd get all pissed and back out and I'd be left with a whole lot of sod and no one to lay it before it dies.
So what would you all do? Give him my honest opinion after the work is done, or just hold my tongue and let his venture succeed or fail as it will? And what should I say if he asks me for a recommendation? If he weren't a friend, my answer would definitely be hell no, I won't recommend you to anyone. But because he's a friend and I want him to succeed I want to be able to recommend him. Sigh. No more hiring friends.
But I'm not stoked about how we are getting to this point. He's been pretty much totally unprofessional. He's talking about starting a landscaping business, and I'm concerned. Is this how he always works, or did he just figure that because we are friends he could relax and let it all hang out? He's been habitually late, tried to play hookey one day, overestimated the amount of sod he needed by A LOT so I purchased too much, the job that was supposed to take two days is now going into it's fourth day, since he has no license or truck I had to rent a trailer and spend all of Tuesday running around town picking up supplies for him, because he was late I had to unload a whole load of sod by myself, and I came home today and his kid was in my basement playing video games and no one had asked if it was okay that he even bring his kid to my house in the first place... sigh.
I'm torn. Nick and I agree that we're never hiring him for anything again. It's been too much stress. I pray to God he was just being liberal because he knows we're his friends, otherwise his business will fail in a heartbeat (and any future employment, too). If he asks us for a recommendation, I don't know what I'm going to say. Part of me feels like I should give him honest feedback, but part of me feels like there's no real point because I don't think he'll listen or take it seriously. I want to be straight with him, but I'm pretty chickenshit about it. I also feel like I probably should have said something right away (after day one) instead of pretending it was allright. But what was I supposed to do? I was afraid he'd get all pissed and back out and I'd be left with a whole lot of sod and no one to lay it before it dies.
So what would you all do? Give him my honest opinion after the work is done, or just hold my tongue and let his venture succeed or fail as it will? And what should I say if he asks me for a recommendation? If he weren't a friend, my answer would definitely be hell no, I won't recommend you to anyone. But because he's a friend and I want him to succeed I want to be able to recommend him. Sigh. No more hiring friends.
Saturday, April 21, 2012
IEP Assessment
Can you tell I'm sick, home alone, and bored? For all the frazzled moments when I wish for ten minutes of peace and quiet to do what I want, it takes five minutes of peace and quiet to feel bored and want to do something. sigh.
By the way, this will be a bit acronym heavy. I'm adding an acronym key to this blog. I'm lazy. Don't judge me.
Yesterday was Geri's IEP assessment with the school district. I have been working on setting this up not so much because I wanted the school district to "do" anything for her (although I was kinda hoping...) but because I need it to go to other organizations for help. Her IEP will be the document of her various concerns all in one place with lots of official titles and signatures so I can wave it around and yell "Here she is!! Here's what she needs!!! Now HELP her!!"
The appointment was a two-hour play-based assessment, and it went ok. It was sort of weird, though. It's hard to play normally and have her behave like her normal, Geri-berry self when there's 6 people crowded around her in a strange environment asking me constant questions. The group involved a mobility teacher, two TVIs, a school nurse, a Sp Ed teacher, someone I think was an assistant, some guy who I thought was facilities when I saw him wandering in the hallways but then he came in and watched and took notes for a while so I guess he was a part of the the team?, and a butcher and a baker and a candlestick maker. We were in a little area with a nice soft play rug and lots of toys and they spent a lot of time handing Geri toys and getting her to interact with them.
Again, it's weird having a team of people quiz you about your child and watch her play with you. I felt like I was being given a test or something. Sometimes I wasn't able to answer their questions as well as they wanted me to, but I was trying to be as honest as I could. For example, the mobility lady asked me "If she is in one part of the house and you tell her to go to another location, will she? Does she know where that other location is?" Well, that's sort of complicated... she doesn't walk and she is sort of resistant to the exploring lately (post-op and such, with the previous clinginess) so it's not like she goes from one place to another without us very much at all. She seems to know where different places are, especially the potty, but when she is holding my hands and we're walking there it's sort of hard to tell if she's leading me or I'm cueing her. Another tough question "Does she communicate verbally or physically?" Well, that's tough to say. She gets her point across, that's for darned sure. But when I look at things in hindsight, I can not be 100% sure if her vocalizations told me or her gestures and body language. I think it's more gestures right now, but her words are becoming more important.
At any rate, the assessment lasted a little more than an hour and then everyone sort of disappeared on me. One minute I had a crowd of people around, suddenly it was just me and Geri. I was thinking maybe it was time to pack up and go home, then the mobility instructor came back to talk to me and explained that everyone was off typing in their notes and recording goals for Geri and someone would bring over the report and review it with me when they finished. Then she started talking about her goals with me. She wants Geri to learn to use the long white cane and be able to travel a distance of 20 feet with it, waling next to an adult. She also wants her to be able to mentally map a familiar location and go to a directed spot. I'm on board for both of these goals, but when I asked how we would do this the only answer was "in school." What if she's not ready to go to school yet? What if she's not ready for the separation? "We can only work with her in school. Maybe the Anchor Center will help?" sigh. Well, how do we get her a cane? "I issue them. I'm the only one who can give her a cane." sigh. Well, can we buy her a cane and start working with her on it at home? "Oh NO! You'd teach her all sorts of bad habits! Don't do that!" Then she told me I "hover" too much and to let Geri try things on her own. double sigh. Yes, I'm trying to keep her from walking independently... because I like carrying a 35-pounder EVERYWHERE! She should have seen us last week, when I forced Geri to push her shopping cart a block to her brother's school.
This became the theme, really, for all the other people who came back to talk to us. A lot of talk about how she needs to learn independence, but no assistance available until we enroll her in school and no help or ideas on how to do things ourselves. I really shouldn't have gotten my hopes up, in retrospect. We knew this was just a stepping-stone, the magical document we need to get help from TRE and CSDB. Still, it's disappointing to navigate the red tape with my child in tow.
I think the other big thing we got out of this is certainty about enrolling Geri in CSDB. We were wondering if we should "mainstream" her, but part of the IEP is a breakdown of how much special services she would get a week. In a 10+ hour week of school, she'd get about 5.5 hours of special instruction immersed in a sighter classroom. That just doesn't seem like enough to me, especially if we have a school designed for visually impaired kids with similar peers right up the street. I'm also concerned about her being mainstreamed with sighted peers of her same age, since she can be fearful of other kids. It's not so much about protecting her from them as knowing that she's not likely to learn if she's afraid, and she's likely to be afraid of a group of sighted kiddos. Also I want her to be in a classroom with materials that are going to be more accessible and useful for her.
So, that's another step in the process down. Next week I'll be heading over to TRE to find out about their resources and about getting supplemental Medicaid for her. I think we now have everything we need for them - the IEP, letters from doctors, birth certificate, SSN. Hopefully we can make some progress there... and the wait list for services won't be too long!
By the way, this will be a bit acronym heavy. I'm adding an acronym key to this blog. I'm lazy. Don't judge me.
Yesterday was Geri's IEP assessment with the school district. I have been working on setting this up not so much because I wanted the school district to "do" anything for her (although I was kinda hoping...) but because I need it to go to other organizations for help. Her IEP will be the document of her various concerns all in one place with lots of official titles and signatures so I can wave it around and yell "Here she is!! Here's what she needs!!! Now HELP her!!"
The appointment was a two-hour play-based assessment, and it went ok. It was sort of weird, though. It's hard to play normally and have her behave like her normal, Geri-berry self when there's 6 people crowded around her in a strange environment asking me constant questions. The group involved a mobility teacher, two TVIs, a school nurse, a Sp Ed teacher, someone I think was an assistant, some guy who I thought was facilities when I saw him wandering in the hallways but then he came in and watched and took notes for a while so I guess he was a part of the the team?, and a butcher and a baker and a candlestick maker. We were in a little area with a nice soft play rug and lots of toys and they spent a lot of time handing Geri toys and getting her to interact with them.
Again, it's weird having a team of people quiz you about your child and watch her play with you. I felt like I was being given a test or something. Sometimes I wasn't able to answer their questions as well as they wanted me to, but I was trying to be as honest as I could. For example, the mobility lady asked me "If she is in one part of the house and you tell her to go to another location, will she? Does she know where that other location is?" Well, that's sort of complicated... she doesn't walk and she is sort of resistant to the exploring lately (post-op and such, with the previous clinginess) so it's not like she goes from one place to another without us very much at all. She seems to know where different places are, especially the potty, but when she is holding my hands and we're walking there it's sort of hard to tell if she's leading me or I'm cueing her. Another tough question "Does she communicate verbally or physically?" Well, that's tough to say. She gets her point across, that's for darned sure. But when I look at things in hindsight, I can not be 100% sure if her vocalizations told me or her gestures and body language. I think it's more gestures right now, but her words are becoming more important.
| Someday!! |
This became the theme, really, for all the other people who came back to talk to us. A lot of talk about how she needs to learn independence, but no assistance available until we enroll her in school and no help or ideas on how to do things ourselves. I really shouldn't have gotten my hopes up, in retrospect. We knew this was just a stepping-stone, the magical document we need to get help from TRE and CSDB. Still, it's disappointing to navigate the red tape with my child in tow.
I think the other big thing we got out of this is certainty about enrolling Geri in CSDB. We were wondering if we should "mainstream" her, but part of the IEP is a breakdown of how much special services she would get a week. In a 10+ hour week of school, she'd get about 5.5 hours of special instruction immersed in a sighter classroom. That just doesn't seem like enough to me, especially if we have a school designed for visually impaired kids with similar peers right up the street. I'm also concerned about her being mainstreamed with sighted peers of her same age, since she can be fearful of other kids. It's not so much about protecting her from them as knowing that she's not likely to learn if she's afraid, and she's likely to be afraid of a group of sighted kiddos. Also I want her to be in a classroom with materials that are going to be more accessible and useful for her.
So, that's another step in the process down. Next week I'll be heading over to TRE to find out about their resources and about getting supplemental Medicaid for her. I think we now have everything we need for them - the IEP, letters from doctors, birth certificate, SSN. Hopefully we can make some progress there... and the wait list for services won't be too long!
Ancient Chinese Secret
"There is one beautiful baby in the world, and every mother believes she has it." - Chinese proverb
Actually, there are three. And I have all of them. Eat your hearts out!
Actually, there are three. And I have all of them. Eat your hearts out!
SCREECH.... BANG....GRIND
And then I look to the left and there's a burly biker rolling into my lane. Sans bike.
I was driving home with the kiddos from a really nice outing to the arcade in Manitou. Headed home on Manitou Blvd/Colorado Ave and cruising in the right lane. All of a sudden, I hear all this ruckus to my left and there's a Harley on the ground and a dude tumble-saulting into my lane.
I slammed the brakes, threw it into park, and jumped out. Luckily, the guy had already jumped up off the ground. His bike was on it's side in front of this little green station wagon. The teenager who had been driving said station wagon was out of his car and for one tense moment I thought biker dude was going to pummel him, but after some choice words he stopped and stepped back to his bike, lamenting the damage to it.
This is when I noticed the biker woman in the street behind the bike. She had, apparently, gone backwards off the bike instead of forwards and she was now sitting on the street in apparent pain. I started a call to 911 and passed my phone off to another onlooker to go take care of her.
She was conscious, didn't seem disoriented or in shock, but she was in pain. I told her I would start at her head and work my way down asking her to move and asking her questions. I asked her about her head. Does it hurt? Can you see ok? Do you think you hit it? She said no, it was her back. I looked at the back of her head and there was no sign of any scrapes or bumps so I asked her if she could move it, could she turn her head or shrug her shoulders. She said no because her back hurt too much. She explained that her back hurt on the lower left side, near the hip, radiating up. She said it felt like the muscles were torn or pulled or something. She asked me to get her purse for her and, like a dope, I left her to go get it.
While I was grabbing her purse (bad first responder!! no leaving the patient!!) someone else tried to help her up and move her. I saw her stand for a second and then sit right back down. I got back and she said it hurt too much to move and I told her to just stay very still and not move. I was pretty convinced that her spine was ok, it seemed like her injury was a tissue one. At this point someone asked me to move my car so traffic could pass on the right. I moved it to the closest parking lot, right next to the scene of the accident, and told the kids to sit tight, I needed to help that lady. I saw a young woman sanding on the sidewalk, looking around, and I called to her. "hey, you want to help?" I asked. She nodded and I said "Good, stay with my kids while I go take care of that lady." So now I had a sitter.
When I want back to my patient, she was still sitting on the ground. Her boyfriend had finally made his way over to her and he kept touching her back trying to see if she was ok, which was hurting her a lot. I asked him to step back so we could keep her still and more comfortable and asked him how he was doing. He said he was fine, just pissed about his bike. He didn't seem to worried about his poor girlfriend. She was sitting in a weird position and getting really uncomfortable, so after a few minutes I helped her roll to her left hip to be more comfortable. We just sat there and I held her hand while we waited for the paramedics.
When they arrived they started to work on her and she wasn't happy because it hurt but they started getting her braced and boarded. I grabbed her purse and brought it over to her boyfriend. I told him her cell phone and flip flops were under her. A cop on the scene asked me if I'd seen anything and I said not really. I just heard it, saw them in the street and hopped out of my car to help. I asked if he needed me for anything and he said no, so I headed back to my car to collect my kids and head home.
I sort of wish I'd been able to say goodbye to her, since we exchanged first names and she seemed like a real sweetie. I hope they've got her pain under control today, and that it was just a muscle issue and not a disc. I'm glad I was able to help. I know I got a couple of things wrong in how I handled her (NEVER leave your patient, and I probably should have braced her neck with my hands) but in retrospect I'm glad all my first aid training paid off. I'm most glad it wasn't worse.
I think my adrenaline level was at a bazillion for the next three hours... and I don't know if that's what made my immune system collapse in on itself today. The cough and sinus cold that I've been fighting for the last 4 or 5 days has totally taken the upper hand and today I feel like poop. Which suck, because I was supposed to join a new friend on an Autism 5k. :( Here's hoping I feel better by Monday, because the show must go on.
Hopefully with a lot less excitement than Friday afternoon.
Thursday, April 19, 2012
Investigations...
The other day I was directed via random web surfing to this news item about a couple who was being investigated for child abuse due to their daughter's rare genetic disease. The girl had a rare disorder than can cause weakening of the bones, leading to bone fractures from normal handling. The family didn't know she had this (she was only 3 months old and it was the first time they ever brought her to the ER) but the hospital alerted DHS and the child was placed in foster care for the investigation. In a very sad twist, the dad freaked and killed the mother and himself... only a couple of days before genetic testing revealed her disease and cleared her parents of any wrongdoing.
I couldn't help but think of our own situation, and wonder about other parents with special kiddos. Honestly, I have at least one incident a week where something happens with Geri in public and I think to myself, "I wonder if today is the day I get DHS called on me?" In fact, today I had a doozy. Geri has feeding issues. She's hype sensitive to texture, won't eat anything solid, only takes food from a metal spoon, and sometimes she just refuses to eat due to anxiety when she is, in fact, hungry. Her feeding therapist is aware of our practice of "priming the pump" - we force the first bite, when necessary. Typically, after that forced bite she eats like a ravenous wildebeast and all is well. If she continues to refuse after that first bite, we stop. Very often she acts very torn, opening her mouth for the food and seeming eager until the second it reaches her lips, then clamping shut and squealing and writhing violently.
Today, at Chik-Fil-A, I had to attempt to prime the pump with her. I'll admit, it doesn't look pretty. She's on my lap, one arm tucked against my body and me holding the other arm tight to her in a bear hug and I pin her head from thrashing by pressing my cheek against hers. She's mewling like a wounded animal, perhaps outright screaming, and trying to thrash and her legs are kicking. I effing hate to do this, seriously I do, but the other option is to let her starve herself because she's feeling anxious. We have to at least try. Today, however, the whole thing looked about a thousand times worse because her left eye, the recently operated one, looks like a mangled mess.
So here I am, in Chik-fil-A, trying to force food into my daughter's mouth while she screams and thrashes, and she already looks like someone punched her in the eye. And I think to myself "I wonder how long it will take for the cops to get here?"
Yet, I wouldn't be mad at the cops when they arrived. And I wouldn't get mad at whoever called them, either. Because while my kid has food issues and glaucoma, other kids don't. They just have parents that beat them up and force them to eat things they don't want for the power trip. Not for their health. Not for their wellbeing. For no reason other than to terrorize someone smaller and feel big. And those people have to be stopped.
If a baby shows up in the ER with 11 bone fractures at 3 months, an investigation has to happen. The hospital has to call and the DHS folks have to take that child because giving the parents the benefit of the doubt isn't usually in the child's best interest. I'm sorry, but it's true. And if someone had called in a mom force feeding a child who appears to have been beaten, they have to act for the child's safety. I understand that, I appreciate that. Would it be fun for me? Hell no! Would I be happy to see them? Not so much. Would I be scared and sad and hurt? Of course. But I would comply with the investigation, I'd give them the names of all the docs and therapists and social workers already involved in my kids' lives and work with them to figure it out.
While I have compassion for the family in the news story, and I'd hate to trade shoes with them, the reason this family was torn apart is because the dad decided to shoot his wife and himself. NOT because DHS was investigating him. NOT because his daughter was in foster care. If he hadn't done this awful act, the family would presumably have been reunited after their daughter's diagnosis. And while I can understand being scared and hurt and depressed over being investigated, I can't sympathize for a second with making the decision to rob my child of her parents rather than to fight for her. I wouldn't rest until we were reunited. And even if I somehow got so far down in my depression that I thought suicide was even on the table, I can't fathom the decision to kill my spouse so I don't have to go alone. It's one thing to take your life and leave your child with one parent, it's another thing to kill both of you and leave your child orphaned.
I suppose this will come off as a harsh judgement of the dad in question. Well, too bad. What he did was wrong, and I don't think anyone out there will try to argue otherwise. This isn't one of those "oh I'm sure he had his reasons..." sort of gray areas. Killing your spouse is always wrong, and leaving your child an orphan because you are distraught is selfish.
It's sad to think that a parent would be put on trial for trying to do their best with an unusual circumstance, but I'd rather face that then allow the alternative.
I couldn't help but think of our own situation, and wonder about other parents with special kiddos. Honestly, I have at least one incident a week where something happens with Geri in public and I think to myself, "I wonder if today is the day I get DHS called on me?" In fact, today I had a doozy. Geri has feeding issues. She's hype sensitive to texture, won't eat anything solid, only takes food from a metal spoon, and sometimes she just refuses to eat due to anxiety when she is, in fact, hungry. Her feeding therapist is aware of our practice of "priming the pump" - we force the first bite, when necessary. Typically, after that forced bite she eats like a ravenous wildebeast and all is well. If she continues to refuse after that first bite, we stop. Very often she acts very torn, opening her mouth for the food and seeming eager until the second it reaches her lips, then clamping shut and squealing and writhing violently.
Today, at Chik-Fil-A, I had to attempt to prime the pump with her. I'll admit, it doesn't look pretty. She's on my lap, one arm tucked against my body and me holding the other arm tight to her in a bear hug and I pin her head from thrashing by pressing my cheek against hers. She's mewling like a wounded animal, perhaps outright screaming, and trying to thrash and her legs are kicking. I effing hate to do this, seriously I do, but the other option is to let her starve herself because she's feeling anxious. We have to at least try. Today, however, the whole thing looked about a thousand times worse because her left eye, the recently operated one, looks like a mangled mess.
So here I am, in Chik-fil-A, trying to force food into my daughter's mouth while she screams and thrashes, and she already looks like someone punched her in the eye. And I think to myself "I wonder how long it will take for the cops to get here?"
Yet, I wouldn't be mad at the cops when they arrived. And I wouldn't get mad at whoever called them, either. Because while my kid has food issues and glaucoma, other kids don't. They just have parents that beat them up and force them to eat things they don't want for the power trip. Not for their health. Not for their wellbeing. For no reason other than to terrorize someone smaller and feel big. And those people have to be stopped.
If a baby shows up in the ER with 11 bone fractures at 3 months, an investigation has to happen. The hospital has to call and the DHS folks have to take that child because giving the parents the benefit of the doubt isn't usually in the child's best interest. I'm sorry, but it's true. And if someone had called in a mom force feeding a child who appears to have been beaten, they have to act for the child's safety. I understand that, I appreciate that. Would it be fun for me? Hell no! Would I be happy to see them? Not so much. Would I be scared and sad and hurt? Of course. But I would comply with the investigation, I'd give them the names of all the docs and therapists and social workers already involved in my kids' lives and work with them to figure it out.
While I have compassion for the family in the news story, and I'd hate to trade shoes with them, the reason this family was torn apart is because the dad decided to shoot his wife and himself. NOT because DHS was investigating him. NOT because his daughter was in foster care. If he hadn't done this awful act, the family would presumably have been reunited after their daughter's diagnosis. And while I can understand being scared and hurt and depressed over being investigated, I can't sympathize for a second with making the decision to rob my child of her parents rather than to fight for her. I wouldn't rest until we were reunited. And even if I somehow got so far down in my depression that I thought suicide was even on the table, I can't fathom the decision to kill my spouse so I don't have to go alone. It's one thing to take your life and leave your child with one parent, it's another thing to kill both of you and leave your child orphaned.
I suppose this will come off as a harsh judgement of the dad in question. Well, too bad. What he did was wrong, and I don't think anyone out there will try to argue otherwise. This isn't one of those "oh I'm sure he had his reasons..." sort of gray areas. Killing your spouse is always wrong, and leaving your child an orphan because you are distraught is selfish.
It's sad to think that a parent would be put on trial for trying to do their best with an unusual circumstance, but I'd rather face that then allow the alternative.
Tuesday, April 17, 2012
A Love so Strong...
Yesterday, when we headed up to the Anchor Center for toddler time, our neighbor, Ruth, tagged along. Grandma Ruthie has been adopted by our family as a surrogate grandma for the kiddos, since their blood relations are all too far away to spoil them. Grandma Ruthie is very much up for that task and the kids adore her. It was great having her come with is to Anchor Center, since the place is so close to our hearts and she can truly appreciate what it's doing for us... plus she can hang out with Mera in sibling care. However, the real reason she tagged along was to visit Joe.
When we bought the house it took us all of five minutes to meet Ruth and Joe, who lived right next door. Actually, my parents met them first because they were staying in our new house prior to the wedding (we didn't move in until the blessed event). My parents quickly reported that our new neighbors were flat out awesome, as my dad used his smoking as an excuse to chat up Ruth and Joe across the alley and Bill and Marie over the back fence. A good time was had by all.
A person only had to be around Ruth and Joe for roughly 15 seconds to see that they adored each other. Joe always called Ruth his "hunny" and as soon as you met them he'd put his arms around her and say something like "This is my hunny! Isn't she beautiful? Aren't I one lucky guy?!" His enthusiasm was obvious, his love was enormous, and Ruth's slightly flustered and embarrassed response of "Oh, Joe, they don't want to hear that!" was full of love and happiness. The first day Nick and I met them, I remember coming home and saying to him "THAT is what I want us to be like when we're in our 70's."
Joe has cancer, and less than a year after we married and moved in and met them he was at home receiving hospice care. On March 19th, nine days before our Mera was born, Joe passed away as peacefully as possible in his sleep. At the end his pain was beyond managing, but he was a gracious and kind and loving man right up through the end. Just a couple of days before he died we visited him. It was clear to everyone that he was on borrowed time. When we came home after that visit, Nick and I discovered that we had each told him, separately, that we would do our best to take care of his hunny when he was gone. I remember his weak voice telling me how important it is to be good to your spouse, to love them, to do your level best by them. On his way out, the most important thing he could think of to tell people was to love your spouse, because that had been the most important thing to him while he lived.
Joe is buried at the Fort Logan cemetery in Denver, and I sort of assumed that Ruth went up to see him often. On the second anniversary of his death, this March, I brought her flowers and a card and asked her if she could tell me how to find him so I could visit. I was shocked when she told me that she herself had only been to visit him a couple of times. She said "I can't stand to go alone, it hurts too bad, but the kids are so busy they can't really go with me." I told her "Ruth, I'll go with you any time you want."
Sunday night she joined us for dinner and it came up again. I told her, "Ruthie, we go to Denver twice a week. Any time you want to join us we would love to stop over and visit Joe. It would be an honor to take you to see him." She accepted and asked if she could go with me the next day. Of course I said yes.
So on Monday we went to the Anchor Center first, then lunch at Panera, then we headed over to the cemetery. On the way we stopped at a florist and she got him a lovely bouquet of flowers.
Visiting the gravesite, I was struck by Ruth herself. She's such a strong woman, sort of a spitfire, really. She doesn't look to be as old as she is, I think, and she's not afraid to tell you exactly what she's thinking. She loves the Lord with all her heart, and she's so honest and kind. I love Ruth to pieces, I truly do.
Watching her visit him I thought of her strength and a thought occurred to me. Love that strong leaves strength when it goes.
I wish I'd had more time to get to know Joe. I really do. I know this much - he loved his wife and she loved him, in a way too many people never experience in all their lives. Their love was truly special, it lit up everything around them.
We need more love like that in this world, don't we?
When we bought the house it took us all of five minutes to meet Ruth and Joe, who lived right next door. Actually, my parents met them first because they were staying in our new house prior to the wedding (we didn't move in until the blessed event). My parents quickly reported that our new neighbors were flat out awesome, as my dad used his smoking as an excuse to chat up Ruth and Joe across the alley and Bill and Marie over the back fence. A good time was had by all.
A person only had to be around Ruth and Joe for roughly 15 seconds to see that they adored each other. Joe always called Ruth his "hunny" and as soon as you met them he'd put his arms around her and say something like "This is my hunny! Isn't she beautiful? Aren't I one lucky guy?!" His enthusiasm was obvious, his love was enormous, and Ruth's slightly flustered and embarrassed response of "Oh, Joe, they don't want to hear that!" was full of love and happiness. The first day Nick and I met them, I remember coming home and saying to him "THAT is what I want us to be like when we're in our 70's."
Joe has cancer, and less than a year after we married and moved in and met them he was at home receiving hospice care. On March 19th, nine days before our Mera was born, Joe passed away as peacefully as possible in his sleep. At the end his pain was beyond managing, but he was a gracious and kind and loving man right up through the end. Just a couple of days before he died we visited him. It was clear to everyone that he was on borrowed time. When we came home after that visit, Nick and I discovered that we had each told him, separately, that we would do our best to take care of his hunny when he was gone. I remember his weak voice telling me how important it is to be good to your spouse, to love them, to do your level best by them. On his way out, the most important thing he could think of to tell people was to love your spouse, because that had been the most important thing to him while he lived.
Joe is buried at the Fort Logan cemetery in Denver, and I sort of assumed that Ruth went up to see him often. On the second anniversary of his death, this March, I brought her flowers and a card and asked her if she could tell me how to find him so I could visit. I was shocked when she told me that she herself had only been to visit him a couple of times. She said "I can't stand to go alone, it hurts too bad, but the kids are so busy they can't really go with me." I told her "Ruth, I'll go with you any time you want."
Sunday night she joined us for dinner and it came up again. I told her, "Ruthie, we go to Denver twice a week. Any time you want to join us we would love to stop over and visit Joe. It would be an honor to take you to see him." She accepted and asked if she could go with me the next day. Of course I said yes.
So on Monday we went to the Anchor Center first, then lunch at Panera, then we headed over to the cemetery. On the way we stopped at a florist and she got him a lovely bouquet of flowers.
Visiting the gravesite, I was struck by Ruth herself. She's such a strong woman, sort of a spitfire, really. She doesn't look to be as old as she is, I think, and she's not afraid to tell you exactly what she's thinking. She loves the Lord with all her heart, and she's so honest and kind. I love Ruth to pieces, I truly do.
Watching her visit him I thought of her strength and a thought occurred to me. Love that strong leaves strength when it goes.
I wish I'd had more time to get to know Joe. I really do. I know this much - he loved his wife and she loved him, in a way too many people never experience in all their lives. Their love was truly special, it lit up everything around them.
We need more love like that in this world, don't we?
Sunday, April 15, 2012
HALLELUJAH!!! and Conviction
Tonight, while Nick was putting Geri to bed, she was babbling up a storm. I could hear her and I thought "Oh, poor Nick!" When he came out of the room, he told me about it.
Geri was saying "I wan tadi! I wan pay tadi!"
He asked her "Do you mean TJ? Do you want to play with TJ?"
Geri said "uh-huh!"
The girl who spoke not a single word before the age of four now asks for her brother at bedtime in a four-word sentence.
The girl whose speech was so delayed that her pediatrician thought it indicated mental retardation is stringing together four words in English after only 5 months home.
When Nick told me that story, I cried like a baby. I'm still crying with joy over my daughter's amazing development. I am also crying because I'm reminded of what would have happened to her if she had stayed in the orphanage. At 7, she would have been sent to an institution for life. She would probably never have spoken a word. Never walked. Never played. And she would have been aware of it ALL. They would have stolen her entire life if we hadn't taken her out of there.
And there are others. Hundred of thousands of children just like Geri. Kids who are blind or deaf but have normal intelligence and must suffer in darkness or silence going slowly insane and being abused. Kids with CP or hydrocephaly who get no medical care and lose any quality of life and are abused. Kids who have Down's or Trisomy and are left to die. Healthy kids who are abused and then kicked out at 16 and swallowed up by drugs and prostitution and human trafficking and suicide and homelessness and crime and despair. They are still there and it's wrong.
Does it seem like someone else's problem? We don't do that in America, so surely we are better, right? Wrong. "If you know what is right and you do not do it, then you sin." James 4:17 If you know the need, if you are aware of the suffering, if you hear the stories and go right back to your sheltered American life (sorry, but most everyone in the US has it about a billion times better than these kids) then you are wrong.
More than ever I feel compelled to yell at the top of my lungs at everyone around me. "What are you going to do about this? What are YOU going to DO about this?"
Geri was saying "I wan tadi! I wan pay tadi!"
He asked her "Do you mean TJ? Do you want to play with TJ?"
Geri said "uh-huh!"
The girl who spoke not a single word before the age of four now asks for her brother at bedtime in a four-word sentence.
The girl whose speech was so delayed that her pediatrician thought it indicated mental retardation is stringing together four words in English after only 5 months home.
When Nick told me that story, I cried like a baby. I'm still crying with joy over my daughter's amazing development. I am also crying because I'm reminded of what would have happened to her if she had stayed in the orphanage. At 7, she would have been sent to an institution for life. She would probably never have spoken a word. Never walked. Never played. And she would have been aware of it ALL. They would have stolen her entire life if we hadn't taken her out of there.
And there are others. Hundred of thousands of children just like Geri. Kids who are blind or deaf but have normal intelligence and must suffer in darkness or silence going slowly insane and being abused. Kids with CP or hydrocephaly who get no medical care and lose any quality of life and are abused. Kids who have Down's or Trisomy and are left to die. Healthy kids who are abused and then kicked out at 16 and swallowed up by drugs and prostitution and human trafficking and suicide and homelessness and crime and despair. They are still there and it's wrong.
Does it seem like someone else's problem? We don't do that in America, so surely we are better, right? Wrong. "If you know what is right and you do not do it, then you sin." James 4:17 If you know the need, if you are aware of the suffering, if you hear the stories and go right back to your sheltered American life (sorry, but most everyone in the US has it about a billion times better than these kids) then you are wrong.
More than ever I feel compelled to yell at the top of my lungs at everyone around me. "What are you going to do about this? What are YOU going to DO about this?"
Saturday, April 14, 2012
Sleep Training
PLANNING BRIEF
Operation "Go To Sleep So I Don't Snap and Jump off the Roof"Objective: To get Geri's bed (and hopefully Geri herself) out of our room and into the room she is supposed to share with her sister so we can all sleep and prevent my head from exploding.
Target Date: Before she moves out on her own.
Phase One: Self Soothing
We really need to work on this one. See, sleeping through the night is not about actually staying asleep all night. No one does that, not even us grownups. Everyone has a natural sleep cycle that involves multiple wakings per evening. Incidentally, you won't remember a waking if it lasts less then 8 minutes. At any rate, the trick to a good night's sleep is being able to go back to sleep independently when those awakenings do happen. And the best opportunity to practice this skill is bedtime. For a while now, we've been in the habit of rocking Geri until she is completely asleep and then placing her in bed. Tonight, Nick rocked her until she was calm and relaxed, then placed her in bed and hung out in the room until she fell asleep. I doubt this will bear fruit quickly (say, three hours from now when she wakes up again) but if we keep at it, we may see results in a couple of weeks. Hopefully. We think. If God sends us a miracle.
Phase Two: Healing and Cuddly
We can't move her to another room until all the healing from her surgery is done. If she's stressed, this whole thing will flop spectacularly. So, regardless of how quickly or slowly the self-soothing comes along, we can't move forward until her eye is all better and she's off the meds and that shield is totally gone. This gives us more time to develop her attachment to her cuddly, though, so we can start to build her ability to use it as a means of comfort when we are not present.
Phase Three: Building a New Routine
Putting both girls in the same room means a totally new routine for putting them to sleep. We need to figure out what we want that new routine to be, then start implementing the individual portions with each girl on their own turf. That way, when we bring them together, everyone is still getting what's familiar at bedtime.
Phase Four: Move the Damned Bed, Already!
This is when we all work together as a happy family to move Geri's bed into the girls' room. This should be done with fan-fair and celebration. There's no way we can pretend nothing changed, and trying to do so would just confuse Geri and scare her. So we need to frame the whole thing as a big-girl change that's awesome and tons of fun for all.
Phase Five: Being on Hand
When we move the bed and Geri starts sleeping in the girls' room, we will have to be on the ready for supportive soothing and comfort until she adjusts. We already have a baby monitor in the room, and when we hear Geri having a problem at night (either a fearful response to wakening or being unable to settle down) we will immediately turn our receiver off. Just kidding. One of us will have to go to the girls' room and lay down on the floor and stay there for the remainder of the night. Note to self : get a nice camping mat and sleeping bag ready to go. Anyway, this shows Geri that we will still care for her at night, even if she's not in our room, and will alleviate her fears so that she can get back into the business of self-soothing. The idea is that, over time, she'll need it less and less because she will be more and more assured of our continued love and care. That's the idea, anyway.
Equipment: camping mat, sleeping bag, baby monitor, cuddly, patience, napalm (jk... I think)
Risk: Unbelievably high, but not as high as the risk of me going postal if she's not out of our room in the next couple of months
Disaster Preparedness: In case of catastrophic failure, we will fall back to phase one for a while and re-evaluate. I am preparing my Last Will and Testament as well as my Do Not Resuscitate notice in case we can't get out of phase one.
Charts, Graphs, and Images:
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| This is what's called "Ringing the Bell" in our house... |
Post-Op Blues
Here's what sucks about your child having eye surgery, in no particular order:
1. Medical tape - we have to use it to keep the shield on her eye and it turns the skin on her face all red. Plus it gets stuck in her hair and then it pulls her hair out when I have to take the shield off to do medicines, which means we go into medicines with her already pissed beyond belief. Fun!
2. Her tears - I hate it when she cries, but the surgery makes it even worse because every tear that falls from that poor left eye scares the crap out of me. It makes me scared that a stitch has let go and all the fluid in her eye is leaking out. I'm afraid the damned thing is going to deflate like a popped water balloon. Sorry if that's gross for you, but if I have to think it 17 times a day then I'm going to make you think it, too. Misery loves company.
3. The shield - It make her look like a bug. It's horribly conspicuous and people stare. Small children point. It requires tape to stay in place (see #1), when she's sleeping and she lays on it she gets uncomfortable and it wakes her up, and for all that trouble she can still get a finger underneath and rub at it. Which seems to hurt a LOT. Oh, and they couldn't even bother giving her a pink one. So she has boyish blue. Fashion FAIL!
4. The meds - Geri takes a lot of medication normally. Now that number is doubled. I wish I were joking. And two of the meds for her eye are ointments, not drops, so putting them in requires we hold her eye REALLY wide open while trying to squeeze the medicated gel onto her poor eye. While she's thrashing and screaming "Mommy!!!" over and over.
5. Her eye looks AWFUL - I'm debating whether to get a picture of this for two reasons. 1) In case anyone else has to go through this, they can see beforehand what to expect; and 2) you probably won't believe it when I try to explain in words. The "white" of her eye is bright red with blood. She has a couple of very bad bruises on her lower lid. The normal scarring of her cornea looks even worse. You can very barely see, in the right light, the line of the incision. But it's that redness in the sclera that makes it terrible. My husband calls it "raw hamburger" and he's pretty right on. And every time she needs her meds, we have to pull her lids wide open and see all that carnage.
And yet, somehow, I manage to be completely grateful for this operation. Yes, there are some seriously crappy, sucky, awful, hellish parts... but if we didn't do it, her vision would get worse and the eye could be lost entirely. As in rotting in her skull. So we opt for the surgery. And it's only about three weeks of this awfulness. After that, the eye will look much better and we can go to using the shield only at night and most of the meds will be done.
And isn't this much of what parenting boils down to? Making the not-fun decisions that your child needs because you know, as the grown-up, that the long-term gain is worth the short-term pain? Sometimes it's making them finish homework or practice the piano, and if that's the worst of it then you are one lucky parental duck. For the not-so-lucky among us, it can be painful treatments of yucky meds or scary surgeries. Still, it's all just the job of parenting and it's worth doing the hard way if that's the best thing for your child.
1. Medical tape - we have to use it to keep the shield on her eye and it turns the skin on her face all red. Plus it gets stuck in her hair and then it pulls her hair out when I have to take the shield off to do medicines, which means we go into medicines with her already pissed beyond belief. Fun!
2. Her tears - I hate it when she cries, but the surgery makes it even worse because every tear that falls from that poor left eye scares the crap out of me. It makes me scared that a stitch has let go and all the fluid in her eye is leaking out. I'm afraid the damned thing is going to deflate like a popped water balloon. Sorry if that's gross for you, but if I have to think it 17 times a day then I'm going to make you think it, too. Misery loves company.
3. The shield - It make her look like a bug. It's horribly conspicuous and people stare. Small children point. It requires tape to stay in place (see #1), when she's sleeping and she lays on it she gets uncomfortable and it wakes her up, and for all that trouble she can still get a finger underneath and rub at it. Which seems to hurt a LOT. Oh, and they couldn't even bother giving her a pink one. So she has boyish blue. Fashion FAIL!
4. The meds - Geri takes a lot of medication normally. Now that number is doubled. I wish I were joking. And two of the meds for her eye are ointments, not drops, so putting them in requires we hold her eye REALLY wide open while trying to squeeze the medicated gel onto her poor eye. While she's thrashing and screaming "Mommy!!!" over and over.
5. Her eye looks AWFUL - I'm debating whether to get a picture of this for two reasons. 1) In case anyone else has to go through this, they can see beforehand what to expect; and 2) you probably won't believe it when I try to explain in words. The "white" of her eye is bright red with blood. She has a couple of very bad bruises on her lower lid. The normal scarring of her cornea looks even worse. You can very barely see, in the right light, the line of the incision. But it's that redness in the sclera that makes it terrible. My husband calls it "raw hamburger" and he's pretty right on. And every time she needs her meds, we have to pull her lids wide open and see all that carnage.
And yet, somehow, I manage to be completely grateful for this operation. Yes, there are some seriously crappy, sucky, awful, hellish parts... but if we didn't do it, her vision would get worse and the eye could be lost entirely. As in rotting in her skull. So we opt for the surgery. And it's only about three weeks of this awfulness. After that, the eye will look much better and we can go to using the shield only at night and most of the meds will be done.
And isn't this much of what parenting boils down to? Making the not-fun decisions that your child needs because you know, as the grown-up, that the long-term gain is worth the short-term pain? Sometimes it's making them finish homework or practice the piano, and if that's the worst of it then you are one lucky parental duck. For the not-so-lucky among us, it can be painful treatments of yucky meds or scary surgeries. Still, it's all just the job of parenting and it's worth doing the hard way if that's the best thing for your child.
Tuesday, April 10, 2012
Honorary Geneticist!
The neurologist at Children's sent me a copy of the genetic analysis findings for Geri-Berry. He told me "This will be Greek to you... it's nearly Greek to me."
Well, he didn't count on me being a former engineer. Part of my job when I worked at the research labs was to review and edit the test reports produced by my (truly delightful and thoroughly competent) Indian coworker. English was not her strong suit. So if I can read mangled technical English written by a very sweet Hindi chemist, I can read anything.
According to the results our little one has a gain of 1.6Mb at the 8p23.1 region. Which means that chromosome number 8 has duplicated material on the upper portion. Another way of putting it is that the 23rd band on the 8th chromosome is thicker than normal. 8p23.1 abnormality is a very rare syndrome, 1 in 65,000 is the generalized incidence, but in the study cases it presents with a certain facial appearance and with some heart defects, fused or webbed fingers or toes, metabolic disorders, and general developmental delay.
It also typically presents with a gain around 3.7Mb.
The facial features tend to be a prominent forehead with high, arched eyebrows. The heart defect tends to be Tetralogy of Fallot (TOF).
Of course we have to wait for the results of the FISH study, but on first wag I have to say that this sounds like a miss to me. Her gain is low for a true 8p23.1 syndrome. Her facial dysmorphism (she does have some) doesn't match up with the described features. She has no metabolic problems. She has two heart defects, both very minor, and none of them considered TOF. A TOF diagnosis is comprised of finding 5 distinct abnormalities all clustered together. She has two abnormalities, but only one of them is a part of TOF. She has no fusing or webbing of her digits at all.
It may be that she has some extremely slight touch of this 8p23.1 syndrome, maybe in the form of developmental delay. She is, clearly, delayed... but is that really due to a genetic problem or is it due to her complete deprivation of stimulation during her early years? Or maybe it's just due to her visual impairment? She's behind, but she's catching up faster than we ever would have hoped or dreamed and appears to be quite intelligent. She's actually very normal, for a blind kid!
The good news is that, even if she does have some level of 8p23.1, the outlook is good. This syndrome doesn't limit lifespan, and it doesn't appear to have a huge effect on quality of life. In the higher gain, typical cases, adult patients were able to live almost entirely independently. And that's the people who presented all of the mentioned symptoms in a severe degree. So for Geri to have such a slight manifestation of the characteristics, and such a low gain in this troublesome region, then I would feel safe in assuming that the overall impact to her ability to live a happy, independent adult life would be even less than typical.
She's got a bit of extra genetic material, but nothing to write home about. So I'm writing about it. :) I'll let you know when we get the FISH results back. Until then, all is going very well on the homefront. I hope it's going well for you, too!
Well, he didn't count on me being a former engineer. Part of my job when I worked at the research labs was to review and edit the test reports produced by my (truly delightful and thoroughly competent) Indian coworker. English was not her strong suit. So if I can read mangled technical English written by a very sweet Hindi chemist, I can read anything.
According to the results our little one has a gain of 1.6Mb at the 8p23.1 region. Which means that chromosome number 8 has duplicated material on the upper portion. Another way of putting it is that the 23rd band on the 8th chromosome is thicker than normal. 8p23.1 abnormality is a very rare syndrome, 1 in 65,000 is the generalized incidence, but in the study cases it presents with a certain facial appearance and with some heart defects, fused or webbed fingers or toes, metabolic disorders, and general developmental delay.
It also typically presents with a gain around 3.7Mb.
The facial features tend to be a prominent forehead with high, arched eyebrows. The heart defect tends to be Tetralogy of Fallot (TOF).
Of course we have to wait for the results of the FISH study, but on first wag I have to say that this sounds like a miss to me. Her gain is low for a true 8p23.1 syndrome. Her facial dysmorphism (she does have some) doesn't match up with the described features. She has no metabolic problems. She has two heart defects, both very minor, and none of them considered TOF. A TOF diagnosis is comprised of finding 5 distinct abnormalities all clustered together. She has two abnormalities, but only one of them is a part of TOF. She has no fusing or webbing of her digits at all.
It may be that she has some extremely slight touch of this 8p23.1 syndrome, maybe in the form of developmental delay. She is, clearly, delayed... but is that really due to a genetic problem or is it due to her complete deprivation of stimulation during her early years? Or maybe it's just due to her visual impairment? She's behind, but she's catching up faster than we ever would have hoped or dreamed and appears to be quite intelligent. She's actually very normal, for a blind kid!
The good news is that, even if she does have some level of 8p23.1, the outlook is good. This syndrome doesn't limit lifespan, and it doesn't appear to have a huge effect on quality of life. In the higher gain, typical cases, adult patients were able to live almost entirely independently. And that's the people who presented all of the mentioned symptoms in a severe degree. So for Geri to have such a slight manifestation of the characteristics, and such a low gain in this troublesome region, then I would feel safe in assuming that the overall impact to her ability to live a happy, independent adult life would be even less than typical.
She's got a bit of extra genetic material, but nothing to write home about. So I'm writing about it. :) I'll let you know when we get the FISH results back. Until then, all is going very well on the homefront. I hope it's going well for you, too!
Saturday, April 7, 2012
A Piece of History...
The other day, I happened to be in Manitou Springs for a playdate with a great group of ladies that I met at the park recently. It was a very fine day, a great time was had by all, and as I was leaving with the girls I spied my water bottle sitting on the seat, empty, and thought "I need me some spring water."
If you haven't been to Manitou, get your butt up there and try the spring water. Seriously, not just one spring either. Start at the far end (Memorial Park) and work your way all the way up to Soda Springs and out onto Ruxton Ave, trying each spring you come across. There's a bunch of them and each tastes just a bit different, due to their different mineral contents. It's a fun time, and you may find a favorite. Mine is "Twin Spring" on Ruxton Ave. It's basically the furthest one west, and it's got a great taste to it. I love it solo, but it makes a killer Manitou Lemonade, too. (Manitou Lemonade = Country Time made with spring water)
Twin Spring also has the added benefit of being a stones throw from my favorite B&B, the 1892 Victoria's Keep. When I was heading out to my favorite spring, I decided to swing by my favorite B&B and drive by it nostalgically. When I was driving by I was surprised to see a yard sale in the front yard. Immediately, I knew I had to stop by and get something.
This B&B is not only an amazing place in a fabulous location with the best breakfast ever, but it happens to be something of a cornerstone to the Lauren and Nick love story. After we had been dating a couple of months, we had a spontaneous overnight there in the Royal Chambers. Talking rapturously about old Victorian houses, we discovered a mutual desire to buy and fix up an old house. I vividly remember talking about how great it would be to fix up an old Victorian and thinking "Could I do that with him?" It was the first time I thought of Nick as maybe being someone I would have around for a long time.
We came back to the same B&B, the exact same room, Valentine's weekend of the next year and it was there, sitting on a trunk at the end of the four-poster bed, that he proposed. He arranged for a beautiful bouquet of lilies waiting in the room when we arrived. When we were married in June, we returned for our honeymoon. We left the wedding and went straight to the B&B without changing because, by this time, the manager, Sheena, knew us and we thought she'd want to see the fancy duds. We were right. Before Mera was born we came back again, and Sheena was thrilled to see my growing belly. At breakfast she would bring us into the kitchen and joke that we were around so much that we weren't guests anymore.
Unfortunately, we haven't been able to go back since Mera was born... just too busy with the kids. Even more unfortunately, that yard sale was being held because the Victoria's Keep is closing it's doors.
After picking TJ up from school, we made a run by the yard sale to see if I could snag something for Nick as a surprise memento. I didn't realize they were shutting down, I just thought a bit of memorabilia might be a fun gift. But when we walked inside and almost all the furniture was on sale the realization hit me and I am not ashamed to say I very nearly cried.
Still, there's a bright lining on this yucky cloud. First, there's the fact that this business was not taken out by crummy economic conditions. The owners are moving into the summer rental business and converting the main house back into a single family home because they want to be able to travel and not have the responsibility of a B&B. But the real cool thing about it is that we were able to score a beautiful four-poster bed, the identical twin of the one that was in the Royal Chambers, for just $75. We set it up today and, for a sentimental sap like me, there's something truly magical about sleeping every night in a bed from the place that we fell in love, got engaged, and celebrated our marital vows.
Today we brought home a piece of our own history, and I'm so glad we got that chance. I would have been very sad if I had simply found out months later that the B&B was shut down. This way, we get a piece of that magic for our whole lives. Plus it's a gorgeous bed for a stupid cheap price.
If you haven't been to Manitou, get your butt up there and try the spring water. Seriously, not just one spring either. Start at the far end (Memorial Park) and work your way all the way up to Soda Springs and out onto Ruxton Ave, trying each spring you come across. There's a bunch of them and each tastes just a bit different, due to their different mineral contents. It's a fun time, and you may find a favorite. Mine is "Twin Spring" on Ruxton Ave. It's basically the furthest one west, and it's got a great taste to it. I love it solo, but it makes a killer Manitou Lemonade, too. (Manitou Lemonade = Country Time made with spring water)
Twin Spring also has the added benefit of being a stones throw from my favorite B&B, the 1892 Victoria's Keep. When I was heading out to my favorite spring, I decided to swing by my favorite B&B and drive by it nostalgically. When I was driving by I was surprised to see a yard sale in the front yard. Immediately, I knew I had to stop by and get something.
 |
| Sure, it's pretty, but the breakfast is even better... |
We came back to the same B&B, the exact same room, Valentine's weekend of the next year and it was there, sitting on a trunk at the end of the four-poster bed, that he proposed. He arranged for a beautiful bouquet of lilies waiting in the room when we arrived. When we were married in June, we returned for our honeymoon. We left the wedding and went straight to the B&B without changing because, by this time, the manager, Sheena, knew us and we thought she'd want to see the fancy duds. We were right. Before Mera was born we came back again, and Sheena was thrilled to see my growing belly. At breakfast she would bring us into the kitchen and joke that we were around so much that we weren't guests anymore.
Unfortunately, we haven't been able to go back since Mera was born... just too busy with the kids. Even more unfortunately, that yard sale was being held because the Victoria's Keep is closing it's doors.
After picking TJ up from school, we made a run by the yard sale to see if I could snag something for Nick as a surprise memento. I didn't realize they were shutting down, I just thought a bit of memorabilia might be a fun gift. But when we walked inside and almost all the furniture was on sale the realization hit me and I am not ashamed to say I very nearly cried.
Still, there's a bright lining on this yucky cloud. First, there's the fact that this business was not taken out by crummy economic conditions. The owners are moving into the summer rental business and converting the main house back into a single family home because they want to be able to travel and not have the responsibility of a B&B. But the real cool thing about it is that we were able to score a beautiful four-poster bed, the identical twin of the one that was in the Royal Chambers, for just $75. We set it up today and, for a sentimental sap like me, there's something truly magical about sleeping every night in a bed from the place that we fell in love, got engaged, and celebrated our marital vows.
 |
| Our new bed... minus all the romantic frillies and the nice bedding... |
Today we brought home a piece of our own history, and I'm so glad we got that chance. I would have been very sad if I had simply found out months later that the B&B was shut down. This way, we get a piece of that magic for our whole lives. Plus it's a gorgeous bed for a stupid cheap price.
Thursday, April 5, 2012
Test Results
Today the neurologist's office finally called me with the results of Geri's chromosomal analysis... sort of. The first round of test results have revealed that she has some extra genetic material. However, these results really don't necessarily mean a thing. Many people who are well within the range of normal have extra chromosomal material. It could turn out to mean precisely nothing in terms of her abilities and future development. So, now they are conducting a more in-depth test to figure out the exact impact of this extra stuff.
Honestly, I'm not terribly surprised. The girl has congenital heart and eye defects. She has GERD. She may have had a vestigal tail (there's a scar that implies she might have had one removed) and her head is a little mis-shapen. Obviously, something happened here. Maybe the funky genetic material is what caused all these physical abnormalities and that's what we're seeing. Hard to tell, but it's nothing to get scared about. Not until she starts levitating or her eyes go white and a tornado takes out the house. We'll be watching carefully when she hits her teenage years for any X-men style developments.
In the meantime, she is learning and developing SO fast. Just tonight she hit a major milestone in the feeding department by eating an entire meal in a booster seat. Translation: NOT in my lap. That's huge, truly huge. And amazingly convenient, too! She has started potty training. It was her idea, I kid you not. She saw her sister sit on the potty seat one night and started demanding it. "Goppy, goppy," she says. In the morning she waked with a dry diaper almost every time, and when she's dressed we take her to the bathroom and she pees in the toilet. She sits on it probably 4 or 5 times a day, and uses it typically 2 times. She helps pull up her Pull-up and her pants afterwards. She has figured out how to remove her shoes and socks. She makes the hand gestures for the Skinna-ma-rink song and tries to sing it with me. She knows where my head, eyes, ears, and hair are. I think she also knows shoulders and toes. If I'm too slow at responding to her requests for "this little piggy", she simply does it herself. Her gait is improving, and she refuses to ride in the stroller now. In fact, she insists on pushing it and sometimes gets mad at me when I try to help her steer!
This kid is a sponge, and she wants to learn how to do everything. Well, almost everything.
We still have a lot of ground to cover. Chewing eludes her at this point. Her speech is not terribly clear. We know what she wants and what she is saying, but people outside our family would probably not know what she is saying at all. She's terrified of her little sister. She continues to lack flexibility and resilience.
Yet, she's come such a long way in such a shot period of time that I can't help but believe that she will overcome these hurdles, too. She's a fighter, that's for sure.
Honestly, I'm not terribly surprised. The girl has congenital heart and eye defects. She has GERD. She may have had a vestigal tail (there's a scar that implies she might have had one removed) and her head is a little mis-shapen. Obviously, something happened here. Maybe the funky genetic material is what caused all these physical abnormalities and that's what we're seeing. Hard to tell, but it's nothing to get scared about. Not until she starts levitating or her eyes go white and a tornado takes out the house. We'll be watching carefully when she hits her teenage years for any X-men style developments.
In the meantime, she is learning and developing SO fast. Just tonight she hit a major milestone in the feeding department by eating an entire meal in a booster seat. Translation: NOT in my lap. That's huge, truly huge. And amazingly convenient, too! She has started potty training. It was her idea, I kid you not. She saw her sister sit on the potty seat one night and started demanding it. "Goppy, goppy," she says. In the morning she waked with a dry diaper almost every time, and when she's dressed we take her to the bathroom and she pees in the toilet. She sits on it probably 4 or 5 times a day, and uses it typically 2 times. She helps pull up her Pull-up and her pants afterwards. She has figured out how to remove her shoes and socks. She makes the hand gestures for the Skinna-ma-rink song and tries to sing it with me. She knows where my head, eyes, ears, and hair are. I think she also knows shoulders and toes. If I'm too slow at responding to her requests for "this little piggy", she simply does it herself. Her gait is improving, and she refuses to ride in the stroller now. In fact, she insists on pushing it and sometimes gets mad at me when I try to help her steer!
This kid is a sponge, and she wants to learn how to do everything. Well, almost everything.
We still have a lot of ground to cover. Chewing eludes her at this point. Her speech is not terribly clear. We know what she wants and what she is saying, but people outside our family would probably not know what she is saying at all. She's terrified of her little sister. She continues to lack flexibility and resilience.
Yet, she's come such a long way in such a shot period of time that I can't help but believe that she will overcome these hurdles, too. She's a fighter, that's for sure.
Wednesday, April 4, 2012
Enter Cuddly
Nick and I have set a lofty goal for the sixth of June.
On that day we celebrate three years of wedded bliss/insanity and I want a date. A real date. No kids. Hell, if I see anyone under 5'4" while we are out I might snap and try to cut someone. I want at least one hour alone with my husband where I'm not fighting the urge to pass out because it's 10pm and I'm exhausted. Carving all of our "together" time out of our "sleep" time gets old.
Of course, nothing in this house can be embarked upon without a great deal of preamble these days, so we are starting the prep work early. We're trying to get Geri ready for separation from us... particularly myself. Lately she has been attaching to us very strongly, and that bond and connection has become very close indeed. It's sort of a mixed blessing, really, because now I can't step 4" away from her in public without her breaking down in tears. At home, I am almost entirely unable to leave the room without her. She wants to be in my arms just about 24/7. It peaked about 5 days ago, and was pretty tough for probably three days, and is now starting to ease up a bit. Still, if we are both going to be out of her sight for any period of time there is going to be a lot of ground to cover first.
Have I mentioned that I adore the book "Parenting Your Internationally Adopted Child" by Dr. Patty Cogen? Seriously, I think I reference it about daily. If nothing else, I find a lot of reassurance in it's pages. Best of all, I get a lot of great ideas for everything that we face.
I could go very deep in depth about the stages of separation and the concept of scaffolding and such and such, but I'm going to stick to the application portion for the sake of brevity. Our plan for being able to go on the afore-mentioned date starts with a "cuddly."
The other day I made Geri her cuddly. I took a bright printed fleece and make a 12" by 12" square tie blanket. That's it. Two layers of fleece tied together. She seemed to like it immediately. First of all, I made sure to have her sitting with me while I tied it together. She was interested in the process. Then I held her with cuddly between us for a few minutes. Now, cuddly is our nigh-constant companion. When I hold her, I put cuddly in her hands. When she cries and I comfort her, I have her hold cuddly while she hugs me. At bed time, Nick and Geri and Cuddly rock together. Cuddly is there when she falls asleep and there for our wake-up cuddles.
She seems to be really starting to like it. She holds it and kneads it between her hands. The two layers of fleece seem to move in a way she enjoys. She bunches it up and holds it next to her nose while she sucks her thumb sometimes. When I hand it to her she doesn't just toss it, like she does with most soft toys. Tonight, while Nick was rocking her to sleep, she was playing with cuddly and saying my name over and over. She is forming a mental association between cuddly and me. Which is great.
The idea is that cuddly will become a physical reminder of me. She will touch it, smell it, hold it and be instantly reminded of mommy. It will, hopefully, become something of a suitable sub when mommy isn't available. Eventually, she will outgrow cuddly and be able to call me to mind without a tactile reminder, but that's a long way off I figure. In the meantime, we have something that will give her a much-needed reminder when she feels upset.
We're introducing it now because we want to get this thing established well before the next phase, which is practice separations starting in May. Hopefully, a whole month of constant cuddly presence will be enough to root the thing in her mind. I'm thinking it should be, since she's already responding to it. I honestly expected it to take longer just to get to this point.
In other news, tonight she sat next to me in the booster seat and ate some spaghetti. I can't explain how HUGE this is. She has NEVER eaten when she wasn't in my or Nick's lap. It allowed some great eye contact practice, too, which was nice. After she was full, she even stayed in the chair and engaged in some very focused play with me and TJ. It was a nice development and I hope it keeps up.
TJ is doing much better in school. Nick spoke to his teacher and she said that her statement to TJ about the video games was about him talking about them in class, not about him playing them at home. Nick wasn't entirely sure about what she was saying, honestly, and then she brought it up to me later and she completely contradicted herself about it. Sigh. I don't know what to make of this chick. Two more months, we just have to last two more months.
Mera is a little nut who wants to wear her new Snow White dress EVERY DAY. Such a cutie pea.
On that day we celebrate three years of wedded bliss/insanity and I want a date. A real date. No kids. Hell, if I see anyone under 5'4" while we are out I might snap and try to cut someone. I want at least one hour alone with my husband where I'm not fighting the urge to pass out because it's 10pm and I'm exhausted. Carving all of our "together" time out of our "sleep" time gets old.
Of course, nothing in this house can be embarked upon without a great deal of preamble these days, so we are starting the prep work early. We're trying to get Geri ready for separation from us... particularly myself. Lately she has been attaching to us very strongly, and that bond and connection has become very close indeed. It's sort of a mixed blessing, really, because now I can't step 4" away from her in public without her breaking down in tears. At home, I am almost entirely unable to leave the room without her. She wants to be in my arms just about 24/7. It peaked about 5 days ago, and was pretty tough for probably three days, and is now starting to ease up a bit. Still, if we are both going to be out of her sight for any period of time there is going to be a lot of ground to cover first.
Have I mentioned that I adore the book "Parenting Your Internationally Adopted Child" by Dr. Patty Cogen? Seriously, I think I reference it about daily. If nothing else, I find a lot of reassurance in it's pages. Best of all, I get a lot of great ideas for everything that we face.
I could go very deep in depth about the stages of separation and the concept of scaffolding and such and such, but I'm going to stick to the application portion for the sake of brevity. Our plan for being able to go on the afore-mentioned date starts with a "cuddly."
The other day I made Geri her cuddly. I took a bright printed fleece and make a 12" by 12" square tie blanket. That's it. Two layers of fleece tied together. She seemed to like it immediately. First of all, I made sure to have her sitting with me while I tied it together. She was interested in the process. Then I held her with cuddly between us for a few minutes. Now, cuddly is our nigh-constant companion. When I hold her, I put cuddly in her hands. When she cries and I comfort her, I have her hold cuddly while she hugs me. At bed time, Nick and Geri and Cuddly rock together. Cuddly is there when she falls asleep and there for our wake-up cuddles.
She seems to be really starting to like it. She holds it and kneads it between her hands. The two layers of fleece seem to move in a way she enjoys. She bunches it up and holds it next to her nose while she sucks her thumb sometimes. When I hand it to her she doesn't just toss it, like she does with most soft toys. Tonight, while Nick was rocking her to sleep, she was playing with cuddly and saying my name over and over. She is forming a mental association between cuddly and me. Which is great.
The idea is that cuddly will become a physical reminder of me. She will touch it, smell it, hold it and be instantly reminded of mommy. It will, hopefully, become something of a suitable sub when mommy isn't available. Eventually, she will outgrow cuddly and be able to call me to mind without a tactile reminder, but that's a long way off I figure. In the meantime, we have something that will give her a much-needed reminder when she feels upset.
We're introducing it now because we want to get this thing established well before the next phase, which is practice separations starting in May. Hopefully, a whole month of constant cuddly presence will be enough to root the thing in her mind. I'm thinking it should be, since she's already responding to it. I honestly expected it to take longer just to get to this point.
In other news, tonight she sat next to me in the booster seat and ate some spaghetti. I can't explain how HUGE this is. She has NEVER eaten when she wasn't in my or Nick's lap. It allowed some great eye contact practice, too, which was nice. After she was full, she even stayed in the chair and engaged in some very focused play with me and TJ. It was a nice development and I hope it keeps up.
TJ is doing much better in school. Nick spoke to his teacher and she said that her statement to TJ about the video games was about him talking about them in class, not about him playing them at home. Nick wasn't entirely sure about what she was saying, honestly, and then she brought it up to me later and she completely contradicted herself about it. Sigh. I don't know what to make of this chick. Two more months, we just have to last two more months.
Mera is a little nut who wants to wear her new Snow White dress EVERY DAY. Such a cutie pea.
Monday, April 2, 2012
A New Low...
Not content with simply badmouthing my son to me daily, his teachers have now stooped to a new low - undermining me to my son.
First it was the teacher's aide, who made comments to TJ about his lunch containing "junk food" and telling him that he should bring only fruits and vegetables and water in it. It bothered me that the teacher was talking to him about it instead of bringing it up with me, but I let it go because by this point I was intent on simply getting through the rest of the year without any more dust-ups and I didn't want to be that parent who complains about everything. TJ and I had some great discussions about what is junk and what isn't, and about moderation, so I just let it slide.
Today, when I was picking TJ up, his teacher leaned in close to him and spoke to him very intently. I couldn't hear her (I was on the phone but I was actually trying to listen at this point, it appeared that she was trying to keep me from hearing her) so as we walked away I asked him "what was that about?" and TJ replied "Miss Lulu said that I shouldn't play violent video games at home."
I asked him why she would be talking to him about that and he replied "I was talking about Star Fox and how you shoot the icicles and the robots with lasers and she said it was too violent."
I have a huge problem with this and tomorrow I'm going to raise some hell. If she has a concern about the media my son consumes at home, then she needs to speak to me. He does not make the rules in this house, we do. That's like complaining to the inmates about how the prison is run. It accomplishes nothing... except to undermine my authority in my own home by attempting to set household rules behind my back.
He's not your child. This is not your home. Do you disagree with the way I'm raising him? Tough. Unless I'm abusing or endangering or neglecting him, it's none of your concern. And if you think allowing him to play Star Fox constitutes abuse then I invite you to call DHS. I'm sure they'll get a good laugh out of your call before going back to dealing with the drug addicts and molesters.
I'm all for cooperation between parent and teacher, but that doesn't mean the teacher calls the shots in my home. And attempting to call the shots behind my back isn't cooperation in the slightest.
And that's completely ignoring the fact that Star Fox 64 (the closest recent version to the original 1993 version that we play with him) is rated "Everyone" by the ESRB. For crying out loud, it's 16 bit anthropomorphic woodland animals flying space jets against robots, walls, and the eventual cube with monkey faces on it! Violent? If that's overly violent for her than the world must be a damned frightening place.
First it was the teacher's aide, who made comments to TJ about his lunch containing "junk food" and telling him that he should bring only fruits and vegetables and water in it. It bothered me that the teacher was talking to him about it instead of bringing it up with me, but I let it go because by this point I was intent on simply getting through the rest of the year without any more dust-ups and I didn't want to be that parent who complains about everything. TJ and I had some great discussions about what is junk and what isn't, and about moderation, so I just let it slide.
Today, when I was picking TJ up, his teacher leaned in close to him and spoke to him very intently. I couldn't hear her (I was on the phone but I was actually trying to listen at this point, it appeared that she was trying to keep me from hearing her) so as we walked away I asked him "what was that about?" and TJ replied "Miss Lulu said that I shouldn't play violent video games at home."
.gif) |
| Those of you with weak stomachs may want to avert your eyes... |
I have a huge problem with this and tomorrow I'm going to raise some hell. If she has a concern about the media my son consumes at home, then she needs to speak to me. He does not make the rules in this house, we do. That's like complaining to the inmates about how the prison is run. It accomplishes nothing... except to undermine my authority in my own home by attempting to set household rules behind my back.
He's not your child. This is not your home. Do you disagree with the way I'm raising him? Tough. Unless I'm abusing or endangering or neglecting him, it's none of your concern. And if you think allowing him to play Star Fox constitutes abuse then I invite you to call DHS. I'm sure they'll get a good laugh out of your call before going back to dealing with the drug addicts and molesters.
I'm all for cooperation between parent and teacher, but that doesn't mean the teacher calls the shots in my home. And attempting to call the shots behind my back isn't cooperation in the slightest.
And that's completely ignoring the fact that Star Fox 64 (the closest recent version to the original 1993 version that we play with him) is rated "Everyone" by the ESRB. For crying out loud, it's 16 bit anthropomorphic woodland animals flying space jets against robots, walls, and the eventual cube with monkey faces on it! Violent? If that's overly violent for her than the world must be a damned frightening place.
Sunday, April 1, 2012
IDK LOLZ NOMZ NOMZ
I have been recently watching another mom at church go through some tough parenting decision-making lately, and I'm actually feeling like I understand what she's going through. I'm at the very beginning of the exact problem that she is currently mired in, and I just know that I'm headed for the same place as her. She's being torn between the opinions of therapists and physicians on what appears to be a sticking point in pediatric care... Ankyloglossia
For those of us who don't speak doctor, that's a tongue tie. Another term, which you may have actually heard before, is "tight frenulum." Here's some more info from the medical experts ... here.
 |
| This is what Geri's tongue does when she sticks it out... she looks part snake... |
Geri has a tongue tie. It's pretty severe, I'm thinking, because it makes the tip of her tongue appear forked and there's a deep groove in the middle of her tongue. Her feeding therapy team seems to think it might be bad enough to be impacting her speech and ability to chew and swallow. Her pediatrician, however, seems to think it's a cosmetic issue.
Here's the situation that us poor, hapless moms are thrust into. We're stuck between a therapist and a pediatrician. One tells us in our feeding/speech therapy sessions that this tongue tie has got to be clipped, that it needs to be corrected. The other tells us, during regular office visits, that the condition really only affects nursing and if the child is eating solids then all is well. If we go and see an ear, nose and throat specialist (ENT) then the message is "I can't guarantee the surgery will help with anything."
What's a mom to do? We've got one expert telling us adamantly to get this condition corrected. We've got another telling us not to bother. We've got a third refusing to guarantee results but talking about putting our little ones under general anesthesia, which always sounds ominous.
Dear therapists, docs and specialists - please find a way to agree on this without putting us parents in the middle. See, we're not experts here. Sure, we can do our research online but that research is just going to reiterate all three of your viewpoints and leave us with nothing more than what we started with. Being stuck in the middle of your disagreement feels a lot like being a little kid whose parents are fighting - I don't understand what's wrong and I don't know how to fix it. I feel powerless and confused because the people who are supposed to know what to do appear to, well, not know what to do. My mom friend said today, half jokingly, that she'd like to stick all these experts in a room together and make them argue it out. I actually envisioned a cage match, where one of the three emerges sweaty and bruised and gives the orders to some nurse who scurries off to make it happen... or not happen, whatever the case may be.
When our kids have a problem, we want to fix it. It's part of being a mom. We're looking to you to tell us what we need to do. So get your crap together, hash this junk out, and give us a way ahead.
Or, I swear, I'm building an octagon in my backyard. And then won't YOU be sorry!
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