Tomorrow is our appointment at our PWS clinic. For those of you who aren't familiar with what this means, our clinic days are the days we take S down to our Children's Hospital, to see a team of doctors etc. who specialize in PWS. Tomorrow we will be checking in with the geneticist who is a PWS expert, a behavioral psychologist, and a dietitian. We may possibly also see the endo but I took S for a separate appointment with him in January, so we may just say hi to him. I really like all the people we see; they are great humans and they really care about the kids they work with.
However, these are not my favorite days. I do not look forward to these days. I will be greatly relieved if we can even get out the door without S fighting me about what she should wear. I will be shocked if we get through the day without the "S needs to lose weight" talk. I have to imagine that, for many a PWS parent, that talk becomes a bit inevitable. I'm sure that various PWS parents who might read my blog, may be gasping in horror right now that we have allowed S's weight to get into an unacceptable range. I do not fault the doctors or the dietician for telling us that we need to address the issue; that is their job. They have charts to look at, growth curves to map out, percentiles which go strictly by the numbers and must be adhered to. They are just doing their job. They are going to grill me about her diet, what we feed her, how much exercise she gets. It is going to be grueling, and we will simultaneously be trying to keep S amused throughout all this. We will try to explain S's current behavioral challenges, and we will try to make the best decision possible as to whether a small dose of medication - Zol.oft, Proza/c, like that - is looming. How bad does it have to get, just trying to basically live with a child with behavioral issues, before medication becomes necessary? I don't know. It's not something I really wanted to have to do for S. But the truth is, it is becoming harder and harder to have her get through consecutive days, and have her mood/demeanor/personality remain stable. And no, I don't really think these are behaviors she's exhibiting because of the food dyes/preservatives/gluten in her food or too many carbs in her diet. I mean, if the dietician tomorrow says, "try this diet with S, I have personally seen it cause positive behavioral changes", then we'll see, but I don't really know where this is headed. I just know that I live on pins and needles all. day. long. with her, wondering what seemingly unimportant thing is going to set her off into an epic, ugly meltdown. The meltdowns are becoming harder to bounce back from, for both her and the rest of us!
My older daughter K, is also going to have an interesting day tomorrow. The 4th, 5th, and 6th grade classes are taking the first part of our state's standardized testing tomorrow, with the second half for her grade on Friday. I really am curious as to how this will go, as the math prep-book which she's been bringing home since January has been causing her a significant amount of stress. There were several evenings where the only way she was going to get the math pages done was if B or I sat with her and coached her through the problems. What will she do for those sections of the test tomorrow (or Friday, not sure which day math is)? Her specific 6th-grade class has also been learning how to do a research paper. This is complicated by the fact that her teacher, who is somewhat of a computer geek, is having them do this using computer software specifically focused on writing papers. So, not only is she having to learn what a research paper even is, and all the parts of the process that come before writing one, she is having to learn how to use this software. I like her teacher a lot but this was NOT a good combination, not for K and probably not for others in the class either. What's wrong with good 'ol index cards for pete's sake??
So, I'm going to bed "early", in the hopes that I might actually sleep.
Later,
Jen
Tuesday, April 26, 2011
Saturday, April 23, 2011
Prader-Willi Syndrome: Community = Room for Everyone
I still remember, quite vividly, many of the moments and experiences of the first six months after S was diagnosed. I remember sitting at the dining-room table, on the phone, taking notes as I listened to the geneticist tell me the news. I had never heard of Prader-Willi Syndrome before, neither had my husband, neither had any of my family.
We weren't alone, though. Even before our second appointment with the geneticist, after she had evaluated S, the bloodwork had been drawn, and the diagnosis was certain, I had landed at the website for the national Prader-Willi Syndrome organization PWSA(USA). We had taken with us to the geneticist's office, printouts of pages from that website, to help us ask as many of the right questions as possible. It was significant, I thought, that the geneticist also had printouts...also from that website. After that appointment and through the next months, we would begin meeting family after family, both from our own state and elsewhere, who were on their own - but a similar - PWS journey.
We had found our new "family", our new community which extended around the globe. At this point I can't even begin to accurately count how many families I have met in real life, online, on Facebook, through message boards, and at conferences, who feel like my family. I mean, I know we might not be best friends were we to hang out in real life - but it is immediately understood, among PWS parents (and any extended family who truly try to understand the PWS life), that we all "get it". We all know what's involved in living with PWS. We all know there are good days and bad days. We all know, I think, that being a special-needs-parent does not automatically mean we are "Perfect PWS Parents"...rather it means we all try hard to give our children good, happy, healthy lives, but sometimes life doesn't cooperate with those efforts.
To me, the word "community" implies inclusion of all realities and all perspectives. In the PWS community there is room for all kinds of families. There is room for parents whose child is in an extremely healthy, stable phase of PWS. There is also room for parents and families where the individual with PWS is definitely not in a calm, stable phase and the family is struggling on a day-to-day basis to get through. There is room for families whose child has never had a bite of fast-food pass their lips, and there is room for families where the parents are okay with the occasional fast-food or restaurant meal. There is room for families where the parents have decided to have the whole family go vegan/gluten-free/low-carb or whatever....and there is room for families who have found success without doing those things. In this community, in my opinion, it is perfectly okay for PWS parents to vent, to express frustration with PWS, to be open about the sometimes horrifically bad days PWS can cause for an entire family. It is also perfectly okay to brag about the successes of a child with PWS, because oftentimes those successes are hard-won.
While I would never provide scads of detail, to parents of a newly-diagnosed child, of every difficult/heart-breaking/challenging/utterly frustrating situation PWS can cause, I am not going to sugarcoat anything. And I think every PWS parent has the right to say "hey, this really sucks" if they need to. Some days, PWS does suck. If it were easy and effortless and our children never suffered, sure, then parents would not have much to feel angry/frustrated/depressed about. But I firmly believe that even as we all fiercely love our children, that love and acceptance can indeed coexist just fine with honesty about how difficult living with PWS can be. I believe in keeping it real, in telling it like it is, when appropriate and to those parents who are ready to hear it. Every PWS family out there IS going to face their own variety of PWS challenges....that is the nature of the PWS beast. It is okay to comment on those challenges, and I think the last people who should ever be judgemental about the venting comments of a PWS parent is...another special-needs parent. Parents who are having a rough time with their child should always feel okay with talking about it; because there are definitely other families out there who are also going through a rough time (that's not a "glass half-empty" prediction, that is a fact - I've seen it happen many times). If a parent who is going through a hard time with their child-with-PWS is "scolded" for talking about their less-than-sunshiny experiences, what's the consequence? That parent is made to feel alone, as if they are doing something wrong with their child, that the complex challenges of PWS are completely controllable and anything less than total calm in their house must be because of their bad parenting.
What parent EVER needs THAT kind of response??
We are all on the same PWS sailboat....when another parent starts to sink with the weight of the PWS life, give them a hug and a life preserver, don't make them walk the plank.
Later,
Jen
We weren't alone, though. Even before our second appointment with the geneticist, after she had evaluated S, the bloodwork had been drawn, and the diagnosis was certain, I had landed at the website for the national Prader-Willi Syndrome organization PWSA(USA). We had taken with us to the geneticist's office, printouts of pages from that website, to help us ask as many of the right questions as possible. It was significant, I thought, that the geneticist also had printouts...also from that website. After that appointment and through the next months, we would begin meeting family after family, both from our own state and elsewhere, who were on their own - but a similar - PWS journey.
We had found our new "family", our new community which extended around the globe. At this point I can't even begin to accurately count how many families I have met in real life, online, on Facebook, through message boards, and at conferences, who feel like my family. I mean, I know we might not be best friends were we to hang out in real life - but it is immediately understood, among PWS parents (and any extended family who truly try to understand the PWS life), that we all "get it". We all know what's involved in living with PWS. We all know there are good days and bad days. We all know, I think, that being a special-needs-parent does not automatically mean we are "Perfect PWS Parents"...rather it means we all try hard to give our children good, happy, healthy lives, but sometimes life doesn't cooperate with those efforts.
To me, the word "community" implies inclusion of all realities and all perspectives. In the PWS community there is room for all kinds of families. There is room for parents whose child is in an extremely healthy, stable phase of PWS. There is also room for parents and families where the individual with PWS is definitely not in a calm, stable phase and the family is struggling on a day-to-day basis to get through. There is room for families whose child has never had a bite of fast-food pass their lips, and there is room for families where the parents are okay with the occasional fast-food or restaurant meal. There is room for families where the parents have decided to have the whole family go vegan/gluten-free/low-carb or whatever....and there is room for families who have found success without doing those things. In this community, in my opinion, it is perfectly okay for PWS parents to vent, to express frustration with PWS, to be open about the sometimes horrifically bad days PWS can cause for an entire family. It is also perfectly okay to brag about the successes of a child with PWS, because oftentimes those successes are hard-won.
While I would never provide scads of detail, to parents of a newly-diagnosed child, of every difficult/heart-breaking/challenging/utterly frustrating situation PWS can cause, I am not going to sugarcoat anything. And I think every PWS parent has the right to say "hey, this really sucks" if they need to. Some days, PWS does suck. If it were easy and effortless and our children never suffered, sure, then parents would not have much to feel angry/frustrated/depressed about. But I firmly believe that even as we all fiercely love our children, that love and acceptance can indeed coexist just fine with honesty about how difficult living with PWS can be. I believe in keeping it real, in telling it like it is, when appropriate and to those parents who are ready to hear it. Every PWS family out there IS going to face their own variety of PWS challenges....that is the nature of the PWS beast. It is okay to comment on those challenges, and I think the last people who should ever be judgemental about the venting comments of a PWS parent is...another special-needs parent. Parents who are having a rough time with their child should always feel okay with talking about it; because there are definitely other families out there who are also going through a rough time (that's not a "glass half-empty" prediction, that is a fact - I've seen it happen many times). If a parent who is going through a hard time with their child-with-PWS is "scolded" for talking about their less-than-sunshiny experiences, what's the consequence? That parent is made to feel alone, as if they are doing something wrong with their child, that the complex challenges of PWS are completely controllable and anything less than total calm in their house must be because of their bad parenting.
What parent EVER needs THAT kind of response??
We are all on the same PWS sailboat....when another parent starts to sink with the weight of the PWS life, give them a hug and a life preserver, don't make them walk the plank.
Later,
Jen
Sunday, April 17, 2011
Songs on Sunday: "Keep Your Head Up"
Great song! I need to listen to this song about 5 times at least, today. Feeling a little defeated - but I'm okay, tomorrow is another day. (The link takes you to the video for the song. Worth watching especially if you are a fan of the show "The Office".)
http://itunes.apple.com/us/album/keep-your-head-up/id395772278?i=395772282
Lyrics, "Keep Your Head Up" by Andy Grammar
I've been waiting on the sunset/ Bills on my mindset /I can't deny they're getting high
Higher than my income / My income's breadcrumbs /I've been trying to survive
The glow that the sun gives / Right around sunset / Helps me realize
This is just a journey / Drop your worries /You are gonna turn out fine.
Oh, you'll turn out fine. / Fine, oh, you'll turn out fine.
But you gotta keep your head up, oh,
And you can let your hair down, eh.
you gotta keep your head up, oh,
And you can let your hair down, eh.
I know it's hard, know its hard, / To remember sometimes,
But you gotta keep your head up, oh,
And you can let your hair down, eh.
I've got my hands in my pockets, / Kickin these rocks.
Its kinda hard to watch this life go by.
I'm buyin in the skeptics, / Skeptics mess with,
the confidence in my eyes
I'm seeing all the angles, starts to get tangled
I start to compromise
My life and the purpose./ Is it all worth it,
Am I gonna turn out fine?
Oh, you'll turn out fine. / Fine, oh, you'll turn out fine
But you gotta keep your head up, oh,
And you can let your hair down, eh.
you gotta keep your head up, oh,
And you can let your hair down, eh.
I know it's hard, know its hard, / To remember sometimes,
But you gotta keep your head up, oh,
And you can let your hair down, eh.
Only rainbows after rain
The sun will always come again.
Its a circle, circling,
Around again, it comes around again.
And you can let your hair down, eh.
You gotta keep your head up, oh,
And you can let your hair down, eh.
I know it's hard, know its hard
To remember sometimes,
But you gotta keep your head up, oh,
And you can let your hair down, eh."
Later,
Jen
http://itunes.apple.com/us/album/keep-your-head-up/id395772278?i=395772282
Lyrics, "Keep Your Head Up" by Andy Grammar
I've been waiting on the sunset/ Bills on my mindset /I can't deny they're getting high
Higher than my income / My income's breadcrumbs /I've been trying to survive
The glow that the sun gives / Right around sunset / Helps me realize
This is just a journey / Drop your worries /You are gonna turn out fine.
Oh, you'll turn out fine. / Fine, oh, you'll turn out fine.
But you gotta keep your head up, oh,
And you can let your hair down, eh.
you gotta keep your head up, oh,
And you can let your hair down, eh.
I know it's hard, know its hard, / To remember sometimes,
But you gotta keep your head up, oh,
And you can let your hair down, eh.
I've got my hands in my pockets, / Kickin these rocks.
Its kinda hard to watch this life go by.
I'm buyin in the skeptics, / Skeptics mess with,
the confidence in my eyes
I'm seeing all the angles, starts to get tangled
I start to compromise
My life and the purpose./ Is it all worth it,
Am I gonna turn out fine?
Oh, you'll turn out fine. / Fine, oh, you'll turn out fine
But you gotta keep your head up, oh,
And you can let your hair down, eh.
you gotta keep your head up, oh,
And you can let your hair down, eh.
I know it's hard, know its hard, / To remember sometimes,
But you gotta keep your head up, oh,
And you can let your hair down, eh.
Only rainbows after rain
The sun will always come again.
Its a circle, circling,
Around again, it comes around again.
And you can let your hair down, eh.
You gotta keep your head up, oh,
And you can let your hair down, eh.
I know it's hard, know its hard
To remember sometimes,
But you gotta keep your head up, oh,
And you can let your hair down, eh."
Later,
Jen
Thursday, April 14, 2011
Prader-Willi Syndrome and the IEP*
*IEP = Individual Education Plan. This is a legal document which is developed by a team of individuals including the parents/guardians of a special-needs child, the school principal, the school Intervention Specialist, any physical/occupation/speech therapists, and sometimes if necessary the school nurse...and possibly other school district or school staff members. The IEP is a legally binding plan for any and all therapeutic, academic, behavioral supports and accomodations a child may need in order to participate in the "free and appropriate public education" (FAPE) every state is mandated to provide for every child. The Individuals with Disabilities Education Act (IDEA) drives the structure of, and policies/procedures for developing, an IEP. (Warning: that is a very simplified explanation!)
An alternative title for this post would be "Thankful Thursday". Brad and I had S's IEP meeting this morning. At this point the only thing that makes me nervous about these meetings is hoping I will remember to bring up everything which S might need, over the next school year. I don't really need to be that nervous about it, as we can call a meeting at any point to make any changes to S's IEP. And fortunately, our school district has thus far been really great in working with us to make sure S is learning appropriately and is in a food-secure environment. Some of the details of her IEP:
-she does not EVER go anywhere in the building without adult supervision. We have to make it clear that she must be accompanied by an adult and not a classmate; I don't want another seven-year-old to have the responsibilty for keeping her out of lockers, lunch boxes, or trash cans if she suddenly decides to search for food.
-she must have 1:1 direct supervision during lunch and snack. We had to clarify this today, as the wording for this accomodation was simply going to be "supervision", which to me could easily be interpreted by an aide as "I can stand 10 feet away from her, supervise 10 other kids at the same time, and she'll still be 'supervised'". S needs someone sitting right next to her; having someone stand 5 feet away and possibly get distracted is still too much opportunity for her to snag a classmate's food.
-This time around, for this IEP covering the next year, we made it a point to add a behavioral detail to the document. S has not yet, thankfully, had a meltdown during school hours. There have been plenty of times since the school year began that a meltdown would start almost as soon as she came home, usually triggered by something really trivial. While I'm glad for the school staff's sake that she hasn't had a meltdown at school, I would not be surprised if, at some point in the next year, these started to happen. So I had to let them know what a meltdown looks like for her - and for those of you who have children without diagnosed behavioral issues, S's meltdowns are nothing like your average tantrum. She completely loses control, screams, and has started kicking/hitting out of sheer anger. It is, to put it bluntly, an ugly moment. These moments are only going to get more challenging as she gets older and bigger. So, the school staff needs to be aware of this possibility, and they need to have a plan in place. They also need to know that restraining her during these meltdowns is a really, really bad idea.
We also talked with the staff about where S is at, academically. They have stated bluntly that at this point, they see absolutely no reason to hold her back and have her repeat any of the next couple grades. She is behind in math and reading, and does need accomodations in those subjects. At the same time, her progress since the beginning of the year has been phenomenal - she is getting really good at her reading, and can read quite a few of the Dr. Suess books on her own - so at this point the consensus is that she is gaining so much from advancing through the grades with her peers, that it is greatly to her benefit to keep on this way. We are glad for that. In S's case, and perhaps for many children with PWS, she may never be able to learn at the same level as her peers. But continuing on in the same classroom, spending as much time as possible with those peers, is an incredible motivator for her.
We are so incredibly thankful that we landed in this school district. I mean, obviously my husband and I have tried to go about all of this as calmly and firmly as possible, and made ourselves quite visible to the school staff over the years. But I still feel fortunate that the school district has responded more than adequately to what we need to keep S safe at school. I know many, many families of children with PWS have problems - serious, long-lasting problems - obtaining appropriate services for their child from their school district; and sadly sometimes this happens simply because the school district doesn't want to take the time to understand the child's needs, and needs to face a potential lawsuit before they'll do what they were supposed to do all along.
I hope you have lots to be thankful for today.
Later,
Jen
An alternative title for this post would be "Thankful Thursday". Brad and I had S's IEP meeting this morning. At this point the only thing that makes me nervous about these meetings is hoping I will remember to bring up everything which S might need, over the next school year. I don't really need to be that nervous about it, as we can call a meeting at any point to make any changes to S's IEP. And fortunately, our school district has thus far been really great in working with us to make sure S is learning appropriately and is in a food-secure environment. Some of the details of her IEP:
-she does not EVER go anywhere in the building without adult supervision. We have to make it clear that she must be accompanied by an adult and not a classmate; I don't want another seven-year-old to have the responsibilty for keeping her out of lockers, lunch boxes, or trash cans if she suddenly decides to search for food.
-she must have 1:1 direct supervision during lunch and snack. We had to clarify this today, as the wording for this accomodation was simply going to be "supervision", which to me could easily be interpreted by an aide as "I can stand 10 feet away from her, supervise 10 other kids at the same time, and she'll still be 'supervised'". S needs someone sitting right next to her; having someone stand 5 feet away and possibly get distracted is still too much opportunity for her to snag a classmate's food.
-This time around, for this IEP covering the next year, we made it a point to add a behavioral detail to the document. S has not yet, thankfully, had a meltdown during school hours. There have been plenty of times since the school year began that a meltdown would start almost as soon as she came home, usually triggered by something really trivial. While I'm glad for the school staff's sake that she hasn't had a meltdown at school, I would not be surprised if, at some point in the next year, these started to happen. So I had to let them know what a meltdown looks like for her - and for those of you who have children without diagnosed behavioral issues, S's meltdowns are nothing like your average tantrum. She completely loses control, screams, and has started kicking/hitting out of sheer anger. It is, to put it bluntly, an ugly moment. These moments are only going to get more challenging as she gets older and bigger. So, the school staff needs to be aware of this possibility, and they need to have a plan in place. They also need to know that restraining her during these meltdowns is a really, really bad idea.
We also talked with the staff about where S is at, academically. They have stated bluntly that at this point, they see absolutely no reason to hold her back and have her repeat any of the next couple grades. She is behind in math and reading, and does need accomodations in those subjects. At the same time, her progress since the beginning of the year has been phenomenal - she is getting really good at her reading, and can read quite a few of the Dr. Suess books on her own - so at this point the consensus is that she is gaining so much from advancing through the grades with her peers, that it is greatly to her benefit to keep on this way. We are glad for that. In S's case, and perhaps for many children with PWS, she may never be able to learn at the same level as her peers. But continuing on in the same classroom, spending as much time as possible with those peers, is an incredible motivator for her.
We are so incredibly thankful that we landed in this school district. I mean, obviously my husband and I have tried to go about all of this as calmly and firmly as possible, and made ourselves quite visible to the school staff over the years. But I still feel fortunate that the school district has responded more than adequately to what we need to keep S safe at school. I know many, many families of children with PWS have problems - serious, long-lasting problems - obtaining appropriate services for their child from their school district; and sadly sometimes this happens simply because the school district doesn't want to take the time to understand the child's needs, and needs to face a potential lawsuit before they'll do what they were supposed to do all along.
I hope you have lots to be thankful for today.
Later,
Jen
Tuesday, April 12, 2011
Little Bit 'A Random
1. Oh, yes, I am experiencing "blog block". I have ideas throughout the day, pretty much every day, for potential posts....and then come 9 or 10 p.m. when I actually make it up here, POOF! the ideas have run away from my brain!
2. It got up to 82 degrees here, on Sunday! While it was extremely nice to get outside, I have to admit the extreme change in temperature made me feel a little sick. A little more slowly, please, Mother Nature!
3. This dog, Henry, aka "dipsydoodle", "fuzzybutt", "mr. crunchypants"....
has taught me that the saying "playing possum" is, actually, true. He
4. I have actually SOLD a set of my Zentangle notecards! YAY! Someone who has watched me work on these over the weeks, at a table at my daughter's dance studio, told me she wanted to buy a set. Wow. Again, YAY!
That's all my randomness for the moment, I'm sure I'll think of more random stuff throughout the day...maybe (if I can remember it) I'll add it later.
Later,
Jen
2. It got up to 82 degrees here, on Sunday! While it was extremely nice to get outside, I have to admit the extreme change in temperature made me feel a little sick. A little more slowly, please, Mother Nature!
3. This dog, Henry, aka "dipsydoodle", "fuzzybutt", "mr. crunchypants"....
has taught me that the saying "playing possum" is, actually, true. He tackled an adult possum the other night, fortunately just roughed it up
a bit and then B managed to get him away from it and I got Henry inside. The possum was still laying there, so I went out with a flashlight and checked on it....I really thought it was dead...but it was indeed only
pretending, i.e. "playing possum"! After a while it got up and went home!
Thank goodness.
Henry got a lecture. I'm sure it made no difference. He was all excited. Sigh.
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| copyright JMB 2011 |
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| copyright JMB 2011 |
I will also be selling sets of them, to
raise money for the Prader-Willi Syndrome chapter here in my state, in a few weeks during the coffee-hour at my church. I really hope people like them and buy them!
That's all my randomness for the moment, I'm sure I'll think of more random stuff throughout the day...maybe (if I can remember it) I'll add it later.
Later,
Jen
Friday, April 8, 2011
5-Question Friday!
Okay, away we go....haven't done 5QF in a while!
1. If you could change one thing about yourself what would it be?
Well, if you go by one of my posts of just a few days ago, apparently I'm wanting to change everything!! But, if I had to pick one thing it would probably be that I wish I were more "disciplined" getting done all the stuff I really need to get done! Either I'm far too easily distracted, or I have waaaaay too many irons in the fire, or my brain is just interested in far too many things to be able to accomplish as much as I want to.
Really, there just needs to be more hours in the day. Who can I talk to about that?
2. Write about a time when you got lost.
Honestly, I don't think I've ever gotten lost. Really! Over the past few years I've spent scads of time driving around my state, and I've had to get really really good at knowing where I am, where N-S-E-W is, where the major highways are in my state. When doing that driving I was on my own - no-one with me - so I knew I had to be really sure of where I was.
My phone does have a navigator app on it. B has the same on his phone, he loves it. I'd rather look at a map than listen to the annoying little woman!
3. Camping or 5 star hotel?
5-Star hotel, if only because I really need sleep in order to function well and be nice to people! I'm probably good for some hikes, and toasting marshmallows over the campfire, and maybe even some canoe-ing...but after that, I need me some regular bedding and a hot shower in a bug-free environment.
4. Have you donated blood?
Yes, several times. I need to do this more often!
5. Do you have a budget or do you 'fly by' most months?
Erm....ahem. Well, I guess we sort of have a budget! I'm in charge of paying the bills, and I've gotten it down to a system where some bills are covered in the beginning of the month, and the rest in the middle of the month. It is very tight sometimes! I don't count out every penny, I really just have a pretty clear idea of where the money is going. We could be much better at tracking expenses, though - any impulse-purchase, or unforeseen expense over a certain amount, can really hurt the money situation. Sometimes it is an eternity between paychecks!
Have a good Friday,
Later,
Jen
1. If you could change one thing about yourself what would it be?
Well, if you go by one of my posts of just a few days ago, apparently I'm wanting to change everything!! But, if I had to pick one thing it would probably be that I wish I were more "disciplined" getting done all the stuff I really need to get done! Either I'm far too easily distracted, or I have waaaaay too many irons in the fire, or my brain is just interested in far too many things to be able to accomplish as much as I want to.
Really, there just needs to be more hours in the day. Who can I talk to about that?
2. Write about a time when you got lost.
Honestly, I don't think I've ever gotten lost. Really! Over the past few years I've spent scads of time driving around my state, and I've had to get really really good at knowing where I am, where N-S-E-W is, where the major highways are in my state. When doing that driving I was on my own - no-one with me - so I knew I had to be really sure of where I was.
My phone does have a navigator app on it. B has the same on his phone, he loves it. I'd rather look at a map than listen to the annoying little woman!
3. Camping or 5 star hotel?
5-Star hotel, if only because I really need sleep in order to function well and be nice to people! I'm probably good for some hikes, and toasting marshmallows over the campfire, and maybe even some canoe-ing...but after that, I need me some regular bedding and a hot shower in a bug-free environment.
4. Have you donated blood?
Yes, several times. I need to do this more often!
5. Do you have a budget or do you 'fly by' most months?
Erm....ahem. Well, I guess we sort of have a budget! I'm in charge of paying the bills, and I've gotten it down to a system where some bills are covered in the beginning of the month, and the rest in the middle of the month. It is very tight sometimes! I don't count out every penny, I really just have a pretty clear idea of where the money is going. We could be much better at tracking expenses, though - any impulse-purchase, or unforeseen expense over a certain amount, can really hurt the money situation. Sometimes it is an eternity between paychecks!
Have a good Friday,
Later,
Jen
Thursday, April 7, 2011
Prader-Willi Syndrome: Ten bits of advice for parents of newly diagnosed kids
I have had many opportunities, over the past 4 years or so, to speak with parents shortly after their little ones are first diagnosed. I can only hope that what I have been able to tell them, and my answers to their questions, have been of some help in those first crazy and emotional weeks and months after first learning of their child's PWS diagnosis. Below is a list of ten things which have all, at one point or another, made it into my conversations with parents just beginning the PWS journey. A warning for readers - I do not consider myself to be a "perfect PWS parent". Parents who have been living this PWS journey for even just a few years know that once you get beyond the top 15 basic things to do for a child with PWS, the lifestyle choices of any particular family come into play....so if you are a PWS parent reading this, please keep that in mind - every family is different, and I know you would be able to add considerably to this list! Also, these are only in the order in which I thought of them tonight, not in order of importance.
1. HAVE HOPE. Seriously, have hope! The diagnosis is a shock and it will change how you thought your life would look with children - but HAVE HOPE for your child's future. They WILL be happy, and so will you! Allow yourselves time to adjust to all this. And, know that adjusting to 'all this' may take a few years...or more. That's okay!
2. Expect to be pretty busy, that first year post-diagnosis. Doctor's appointments, therapies, etc. However...
3. DO NOT DRIVE YOURSELVES CRAZY, feeling like you should have accomplished that to-do list yesterday. As long as you know what you have to do for your child, and go about it at your own pace, you and your child will be fine. So many parents, I think, start to feel like if they don't do a, b, or c right away, or start GH therapy immediately, that their child will suffer immensely. Not true! My daughter started GH shots at 10 months - which, these days, is about 5 months (at least) later than kids are starting it now. You know what? She still saw and sees the benefits from GH! Even adults with PWS, who have never been able do GH therapy before, see benefits from the shots! So, if GH therapy is something you choose to pursue for your child, yes get the process started, and stay on top of everything that needs to be done - there is no reason these days for the process to take longer than 5-8 months at the most. But once you know you are doing what you need to, to get your child going with the shots, then take a breath and relax. (and then go schedule those other doctor appointments!!) (kidding on that last bit. Sit down and breathe!)
4. If you are choosing to pursue GH therapy for your child, find an endocrinologist who is familiar with PWS and is not afraid to consider GH therapy for infants/children under 2. GH therapy for very young children is still a concept with which some endocrinologists may be unfamiliar. There are circumstances in which GH therapy may have to be delayed or discontinued - but initially, your endo should be willing to at least start the process, have your child do a sleep study, etc. If they aren't willing to begin the process, find another endocrinologist, or at least find an endo who is willing to consult via phone/e-mail with another endo or PWS expert regarding GH therapy for your child. The age of your child is not enough to deny treatment with GH shots!
5. If you are parents to more than your child with PWS, I strongly suggest instituting some basic "food rules" in your house. (Even if you have only one child, these still make sense!) These are pretty general, and in my house have helped regulate our food consumption and maintain some sanity. These rules are: 1) Eating and snacking times are the same for everyone; there is NO free-range food consumption. If you're hungry, you wait 'til the next scheduled meal or snack-time, to eat. No-one is to ask for food or snacks outside of scheduled snack and meal times. and 2) There is no sharing of food, and no eating off of anyone else's plate. 3) The kitchen and food areas are off-limits to everyone except parents (kids usually don't need to be sipping water or juice all day, so they don't need to be going in and out of the kitchen for that, either).
6. This kind of goes along with #5: If there are multiple children in the home, start to gradually work everyone into a snack-and-meal routine - i.e. the idea that these happen only at specific times. Children are resilient and do indeed soak up knowledge, but it still takes time for them to learn that they are no longer going to be able to walk around the house munching out of a box of Gold.Fish crackers all day. I think kids also need time to learn that while sharing of toys is great, they are no longer encouraged/allowed to share food, period - not with their 'typical' siblings and not with their sibling who has PWS.
7. I always think it is important to tell parents of newly-diagnosed newborns and infants these things:
-their child WILL roll over, sit up, cruise the furniture, and walk;
-their child WILL talk, sing, and smile;
-their child WILL laugh, and play;
-their child WILL be able to do many of the things all children do (including fight with their siblings yay!).
The PWS diagnosis does not mean the end of happiness in your family! Your child will amaze you and thrill you and bring you to happy tears with their hard-won accomplishments. They are spectacular kids! Living with PWS will take you down a 'road less travelled'....where you still have other families and much joy to accompany you.
8. Join up with the national PWS organization in the U.S., PWSA(USA) - visit http://www.pwsausa.org/ for more information. There is also an international PWS organization, IPWSO - visit http://www.ipwso.org/ to find out more. There are also many state chapters in the U.S., and the office at PWSA(USA) can also connect you with those and with another family in your state. Try to meet, visit with, or somehow connect with other families near you if you can. Personally, I feel that our Sophie would not be doing as well as she is if my husband and I had isolated ourselves and tried to do this alone. Find other families and maintain your connections to the PWS community, even when you feel like you're in a 'calm PWS phase'. It's important!
9. The role of extended family: Your extended family members can prove to be amazingly supportive...or not! If you spend a significant amount of time with extended family, you will need to find a way to educate them about the 'policies and procedures of PWS'. In our society food is so pervasive - well beyond the basic needs of human survival. Food is used to show love, to soothe boo-boos, to celebrate anything and everything - especially with extended family. Most of this will be affected by the requirement of PWS, that food not be readily available or used to treat/reward your child. It takes some diplomacy, tact, patience and time to convey this message to extended family....and, sad to say, sometimes extended family members are not always able or willing to understand this. Be prepared to adjust your family's activities as necessary, to keep your child safe.
10. You can expect your family's eating habits to change, because of your child's PWS diagnosis. My own family does still eat out, and we do still go to family holiday dinners, but our eating habits have definitely been affected by the presence of PWS in our house. Living with PWS will, whether you like it or not, change the way you think about food and how/when/why/in what quantities it is consumed in your house. This is good though! You will eventually find yourself making healthier choices for yourself more often, because you are paying such close attention to food ingredients and calorie counts for your child's sake. Don't feel like you have to make food changes overnight, and don't worry - you will still be able to have treats or whatever. But, understand that for your own sanity and your child's health, safety, and well-being, those changes are part of this journey.
Well, as always when I'm writing about PWS, I could go on...and on...and on....but I'll stop now. Thank you for reading and for any feedback.
Later,
Jen
1. HAVE HOPE. Seriously, have hope! The diagnosis is a shock and it will change how you thought your life would look with children - but HAVE HOPE for your child's future. They WILL be happy, and so will you! Allow yourselves time to adjust to all this. And, know that adjusting to 'all this' may take a few years...or more. That's okay!
2. Expect to be pretty busy, that first year post-diagnosis. Doctor's appointments, therapies, etc. However...
3. DO NOT DRIVE YOURSELVES CRAZY, feeling like you should have accomplished that to-do list yesterday. As long as you know what you have to do for your child, and go about it at your own pace, you and your child will be fine. So many parents, I think, start to feel like if they don't do a, b, or c right away, or start GH therapy immediately, that their child will suffer immensely. Not true! My daughter started GH shots at 10 months - which, these days, is about 5 months (at least) later than kids are starting it now. You know what? She still saw and sees the benefits from GH! Even adults with PWS, who have never been able do GH therapy before, see benefits from the shots! So, if GH therapy is something you choose to pursue for your child, yes get the process started, and stay on top of everything that needs to be done - there is no reason these days for the process to take longer than 5-8 months at the most. But once you know you are doing what you need to, to get your child going with the shots, then take a breath and relax. (and then go schedule those other doctor appointments!!) (kidding on that last bit. Sit down and breathe!)
4. If you are choosing to pursue GH therapy for your child, find an endocrinologist who is familiar with PWS and is not afraid to consider GH therapy for infants/children under 2. GH therapy for very young children is still a concept with which some endocrinologists may be unfamiliar. There are circumstances in which GH therapy may have to be delayed or discontinued - but initially, your endo should be willing to at least start the process, have your child do a sleep study, etc. If they aren't willing to begin the process, find another endocrinologist, or at least find an endo who is willing to consult via phone/e-mail with another endo or PWS expert regarding GH therapy for your child. The age of your child is not enough to deny treatment with GH shots!
5. If you are parents to more than your child with PWS, I strongly suggest instituting some basic "food rules" in your house. (Even if you have only one child, these still make sense!) These are pretty general, and in my house have helped regulate our food consumption and maintain some sanity. These rules are: 1) Eating and snacking times are the same for everyone; there is NO free-range food consumption. If you're hungry, you wait 'til the next scheduled meal or snack-time, to eat. No-one is to ask for food or snacks outside of scheduled snack and meal times. and 2) There is no sharing of food, and no eating off of anyone else's plate. 3) The kitchen and food areas are off-limits to everyone except parents (kids usually don't need to be sipping water or juice all day, so they don't need to be going in and out of the kitchen for that, either).
6. This kind of goes along with #5: If there are multiple children in the home, start to gradually work everyone into a snack-and-meal routine - i.e. the idea that these happen only at specific times. Children are resilient and do indeed soak up knowledge, but it still takes time for them to learn that they are no longer going to be able to walk around the house munching out of a box of Gold.Fish crackers all day. I think kids also need time to learn that while sharing of toys is great, they are no longer encouraged/allowed to share food, period - not with their 'typical' siblings and not with their sibling who has PWS.
7. I always think it is important to tell parents of newly-diagnosed newborns and infants these things:
-their child WILL roll over, sit up, cruise the furniture, and walk;
-their child WILL talk, sing, and smile;
-their child WILL laugh, and play;
-their child WILL be able to do many of the things all children do (including fight with their siblings yay!).
The PWS diagnosis does not mean the end of happiness in your family! Your child will amaze you and thrill you and bring you to happy tears with their hard-won accomplishments. They are spectacular kids! Living with PWS will take you down a 'road less travelled'....where you still have other families and much joy to accompany you.
8. Join up with the national PWS organization in the U.S., PWSA(USA) - visit http://www.pwsausa.org/ for more information. There is also an international PWS organization, IPWSO - visit http://www.ipwso.org/ to find out more. There are also many state chapters in the U.S., and the office at PWSA(USA) can also connect you with those and with another family in your state. Try to meet, visit with, or somehow connect with other families near you if you can. Personally, I feel that our Sophie would not be doing as well as she is if my husband and I had isolated ourselves and tried to do this alone. Find other families and maintain your connections to the PWS community, even when you feel like you're in a 'calm PWS phase'. It's important!
9. The role of extended family: Your extended family members can prove to be amazingly supportive...or not! If you spend a significant amount of time with extended family, you will need to find a way to educate them about the 'policies and procedures of PWS'. In our society food is so pervasive - well beyond the basic needs of human survival. Food is used to show love, to soothe boo-boos, to celebrate anything and everything - especially with extended family. Most of this will be affected by the requirement of PWS, that food not be readily available or used to treat/reward your child. It takes some diplomacy, tact, patience and time to convey this message to extended family....and, sad to say, sometimes extended family members are not always able or willing to understand this. Be prepared to adjust your family's activities as necessary, to keep your child safe.
10. You can expect your family's eating habits to change, because of your child's PWS diagnosis. My own family does still eat out, and we do still go to family holiday dinners, but our eating habits have definitely been affected by the presence of PWS in our house. Living with PWS will, whether you like it or not, change the way you think about food and how/when/why/in what quantities it is consumed in your house. This is good though! You will eventually find yourself making healthier choices for yourself more often, because you are paying such close attention to food ingredients and calorie counts for your child's sake. Don't feel like you have to make food changes overnight, and don't worry - you will still be able to have treats or whatever. But, understand that for your own sanity and your child's health, safety, and well-being, those changes are part of this journey.
Well, as always when I'm writing about PWS, I could go on...and on...and on....but I'll stop now. Thank you for reading and for any feedback.
Later,
Jen
Tuesday, April 5, 2011
Is This What a Mid-Life Crisis Feels Like?
Did you ever get tired of...yourself?
Like, you get into this mood where you just want to change everything about yourself, because you feel like you've been the same and looked the same and done the same, for ever 'n' ever?
I'm in that kind of mood!
I'm not going to run out and buy a cherry-red Corv.ette or run off with the pool boy, or anything like that (because subconsciosly I must think that's what people do during a mid-life crisis) (and we don't have a pool, so there is no 'pool boy').
But I'm in this mood where I'd love to pitch my entire "wardrobe" and buy all new clothes, and get a funky haircut and then have it colored something completely different, and go back to school for a degree in something completely different than anything I've ever thought of. Doesn't that all sound exciting?
But, I probably won't do any of those things - because I don't have the money for all new clothes, and the pragmatist in me doesn't want to change my hair (because I might really hate it), and I still have a big chunk of school loans to pay off so I don't really want to spend more money on my own education at the moment.
Maybe I'll just get my ears pierced and paint my nails black and get a small tattoo, or scrape the ugly wallpaper off the dining room walls and paint them to surprise my husband.
Hmmmmmmmmmmm...........
Later,
Jen
Like, you get into this mood where you just want to change everything about yourself, because you feel like you've been the same and looked the same and done the same, for ever 'n' ever?
I'm in that kind of mood!
I'm not going to run out and buy a cherry-red Corv.ette or run off with the pool boy, or anything like that (because subconsciosly I must think that's what people do during a mid-life crisis) (and we don't have a pool, so there is no 'pool boy').
But I'm in this mood where I'd love to pitch my entire "wardrobe" and buy all new clothes, and get a funky haircut and then have it colored something completely different, and go back to school for a degree in something completely different than anything I've ever thought of. Doesn't that all sound exciting?
But, I probably won't do any of those things - because I don't have the money for all new clothes, and the pragmatist in me doesn't want to change my hair (because I might really hate it), and I still have a big chunk of school loans to pay off so I don't really want to spend more money on my own education at the moment.
Maybe I'll just get my ears pierced and paint my nails black and get a small tattoo, or scrape the ugly wallpaper off the dining room walls and paint them to surprise my husband.
Hmmmmmmmmmmm...........
Later,
Jen
Sunday, April 3, 2011
Songs on Sunday
The Script - "For The First Time" (HD Version)
I love this song. I think the lyrics reflect very clearly, what happens in a lot of marriages over time - things get hard, and husband and wife kind of "lose" each other...and sometimes, all along one of them is saying "don't give up on me baby". I think this song also reflects some of the challenges relationships are going through especially these days, with the troubled economy and people out of work etc. The song does have hopeful side to it though!
"She's all laid up in bed with a broken heart
While I'm drinkin' jack all alone in my local bar
And we don't know how, how we got into this mad situation,
only doing things out of frustration,
Trying to make it work, but man, these times are hard
She needs me now, but I can't seem to find the time
I've got a new job now in the umemployment line
And we don't know how, how we got into this mess
Is it God's test, someone help us 'cause we're doin our best
Tryin' to make it work, but man, these times are hard
(Refrain)
But we're gonna start by, drinkin' old cheap bottles of wine,
Sit talkin' up all night, sayin' things we haven't for a while,
A while, yeah,
Smilin' but we're close to tears, even after all these years,
we just now got the feeling, that we're meeting,
for the first time
She's in line at the door with her head held high,
While I just lost my job, but haven't lost my pride,
But we both know how, how we're gonna make it work
when it hurts, when you pick yourself up you get kicked to the dirt,
Trying to make it work, but man these times are hard
But we're gonna start by
Drinkin' old cheap bottles of wine,
sit talking, up all night,
doing things we haven't for a while, a while yeah
We're smiling but we're close to tears,
Even after all these years, we just now
got the feeling, that we're meeting
for the first time
(Refrain)
Oh, these times are hard,
yeah they're making us crazy, don't give up on me baby,
Oh, these times are hard,
yeah they're making us crazy, don't give up on me baby..."
Thanks for stopping by!
Later,
Jen
I love this song. I think the lyrics reflect very clearly, what happens in a lot of marriages over time - things get hard, and husband and wife kind of "lose" each other...and sometimes, all along one of them is saying "don't give up on me baby". I think this song also reflects some of the challenges relationships are going through especially these days, with the troubled economy and people out of work etc. The song does have hopeful side to it though!
"She's all laid up in bed with a broken heart
While I'm drinkin' jack all alone in my local bar
And we don't know how, how we got into this mad situation,
only doing things out of frustration,
Trying to make it work, but man, these times are hard
She needs me now, but I can't seem to find the time
I've got a new job now in the umemployment line
And we don't know how, how we got into this mess
Is it God's test, someone help us 'cause we're doin our best
Tryin' to make it work, but man, these times are hard
(Refrain)
But we're gonna start by, drinkin' old cheap bottles of wine,
Sit talkin' up all night, sayin' things we haven't for a while,
A while, yeah,
Smilin' but we're close to tears, even after all these years,
we just now got the feeling, that we're meeting,
for the first time
She's in line at the door with her head held high,
While I just lost my job, but haven't lost my pride,
But we both know how, how we're gonna make it work
when it hurts, when you pick yourself up you get kicked to the dirt,
Trying to make it work, but man these times are hard
But we're gonna start by
Drinkin' old cheap bottles of wine,
sit talking, up all night,
doing things we haven't for a while, a while yeah
We're smiling but we're close to tears,
Even after all these years, we just now
got the feeling, that we're meeting
for the first time
(Refrain)
Oh, these times are hard,
yeah they're making us crazy, don't give up on me baby,
Oh, these times are hard,
yeah they're making us crazy, don't give up on me baby..."
Thanks for stopping by!
Later,
Jen
Saturday, April 2, 2011
Spring break wrap-up
Well, it has been a relatively calm week...not what I was expecting, given that both kids and my husband have been home all week. Usually having everyone here 24/7 would have driven me insane...and I will admit that it is definitely...louder here when they're all home. But, I gave myself a word of advice at the beginning of the week, which was to lay low, let them all be as noisy as they want to be, and try not to be my regular overly-noise-conscious self. It seems to have worked, and I'm glad of it. Come Monday I will be back to trying to accomplish many things. My to-do list seems never-ending, always, and in weeks like this I really can't tackle ANY of it. I really don't even try!
So what did we do all week? Well, the girls spent oodles of time in their pajamas, only getting dressed when they absolutely had to. We went over and visited my in-laws - nice to do that, sometimes, when it is not a holiday! - and also went to see my sister-in-law/the girls' aunt, at her job one afternoon. She works at a Nature Center, and as we arrived she was just about to make up a new home for a new, tiny little mouse the center had just gotten. Cutest little thing! Aunt B. also let the girls pet a few snakes, and hold a box turtle, and S. watched crickets getting put into the, uh, cricket bin I guess! Yesterday afternoon the girls were able to ride on Aunt B's horse Athena - after they helped brush her of course. Athena is really a wonderful horse, and very big but still gentle enough for the girls to ride. Always fun to go out there, and I think Aunt B. really loves sharing this with the girls! Then today we went over to see my sister and her two kids and their dog, and her (my sister's) husband who is still in the process of having some melanomas removed from his back - some really big sections - I am so glad the biopsies came back negative. I can't believe how tall and grown-up my nephew is getting!
So that's about all we did this week. We didn't take a trip but I will say, it is very nice to have a break from the school routines of getting up early, managing homework, packing lunches etc.! And even with the huge departure from regular routine, S. made it through the week without any big meltdowns; some moments here or there but nothing too bad.
Have a great weekend, thanks for reading, sorry it's not more exciting 'round here!
Later,
Jen
So what did we do all week? Well, the girls spent oodles of time in their pajamas, only getting dressed when they absolutely had to. We went over and visited my in-laws - nice to do that, sometimes, when it is not a holiday! - and also went to see my sister-in-law/the girls' aunt, at her job one afternoon. She works at a Nature Center, and as we arrived she was just about to make up a new home for a new, tiny little mouse the center had just gotten. Cutest little thing! Aunt B. also let the girls pet a few snakes, and hold a box turtle, and S. watched crickets getting put into the, uh, cricket bin I guess! Yesterday afternoon the girls were able to ride on Aunt B's horse Athena - after they helped brush her of course. Athena is really a wonderful horse, and very big but still gentle enough for the girls to ride. Always fun to go out there, and I think Aunt B. really loves sharing this with the girls! Then today we went over to see my sister and her two kids and their dog, and her (my sister's) husband who is still in the process of having some melanomas removed from his back - some really big sections - I am so glad the biopsies came back negative. I can't believe how tall and grown-up my nephew is getting!
So that's about all we did this week. We didn't take a trip but I will say, it is very nice to have a break from the school routines of getting up early, managing homework, packing lunches etc.! And even with the huge departure from regular routine, S. made it through the week without any big meltdowns; some moments here or there but nothing too bad.
Have a great weekend, thanks for reading, sorry it's not more exciting 'round here!
Later,
Jen
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