FOR PETE'S SAKE. Seriously???
If you've read any of my past posts, you may know that my younger daughter Sophie was diagnosed with Prader-Willi Syndrome shortly after she was born. She will be 10 years old very soon, and it has been an interesting, educational, tiring 10 years. The next 10 years should prove to be even more..."educational"...if the stories from other PWS parents are any indication.
So, because life is wholly unpredictable, and because really, who wants their life to be boring and without incident, my older daughter K has just been diagnosed with "Primary Generalized Epilepsy". Wanna know where she was when this diagnosis came about?
She was a gazillion miles away, on a school orchestra/band/choir trip to Orlando, Florida. Talk about a phone call you never, ever want to get at 11:15 p.m. when your child is that far away and experiencing something that must have scared the cr@p out of her. She was in excellent hands, though - the orchestra director was on the trip, and accompanied her through the entire experience of two hospital trips and an EEG which conclusively dx'd PGE but triggered another seizure another seizure in the process.
It hurts my heart to think about my beautiful, smart, funny girl having a seizure, even when there are 3-4 highly-qualified doctors right there to help.
Sorry for the swearing but, honestly, it has been a shitty couple days. K has been dealing with severe anxiety since March of 2013; having dealt with that and turned a corner with it through meds and counseling, now she has this to accept and understand and live with. Certainly she should gain confidence from this experience! Heck she made it through this trip and the seizures and the hospital stays without her parents being physically there with her...IMPRESSIVE, without a doubt.
However...do I wish this trip had happened and finished without this added detail? Most definitely.
Here's hoping that 2014 does NOT become "The Year of The Bad Keppra Adventures". :-/
Later,
Jen
Showing posts with label special-needs parenting. Show all posts
Showing posts with label special-needs parenting. Show all posts
Saturday, January 4, 2014
Saturday, November 9, 2013
The constant heartache
I really try to "stay positive" and "look on the bright side" and "count my blessings", all that good stuff. I do. And if it seems like every time I write in here, I'm NOT happy and I'm not positive and all that...well...that's tough I guess. If you want constant happiness and bubbles and recipes and pictures of kids playing in beautiful piles of leaves, that's not this particular blog. If I run across one like that I'll let you know.
Anyway. Yes, most days I am thankful for lots of stuff. However it is also true that I am pretty much always walking around with a constant heartache. You know what causes that heartache? It's being the parent who is the near-constant observer of all those times when my daughter-with-a-diagnosis, who also shows no obvious signs of having a diagnosis, tries to participate in activities with other children who truly don't have a diagnosis.
For example? Today was Observation Day at Sophie's dance school. This is where the parents can come into the dance room and watch their kids' class (ordinarily we are waiting out in the lobby). And for me, this is such a mixed blessing. Today it was a little less blessing and a little more heartache. Sophie will never have the muscle tone or the gross-motor coordination necessary to truly participate in ballet classes. I am thankful that this dance school is not so serious that they really mind that, right now; however, it is also a heartache to watch my girl try to keep up with the moves and what the teacher is saying. So, YES I'm thankful that this dance school is, thus far, accepting of what Sophie can do - but, at the same time....I'm not stupid, nor am I someone who ignores reality. And the reality is, at some point, Sophie will no longer be able to actually take dance. Yes I know there are other options, and other activities that might be a better fit. But this, right now - THIS is just another manifestation of this constant heartache. I suspect this is something that all special-needs parents experience on a moment-to-moment basis, even as they are trying to put a brave face on things.
Later,
Jen
Anyway. Yes, most days I am thankful for lots of stuff. However it is also true that I am pretty much always walking around with a constant heartache. You know what causes that heartache? It's being the parent who is the near-constant observer of all those times when my daughter-with-a-diagnosis, who also shows no obvious signs of having a diagnosis, tries to participate in activities with other children who truly don't have a diagnosis.
For example? Today was Observation Day at Sophie's dance school. This is where the parents can come into the dance room and watch their kids' class (ordinarily we are waiting out in the lobby). And for me, this is such a mixed blessing. Today it was a little less blessing and a little more heartache. Sophie will never have the muscle tone or the gross-motor coordination necessary to truly participate in ballet classes. I am thankful that this dance school is not so serious that they really mind that, right now; however, it is also a heartache to watch my girl try to keep up with the moves and what the teacher is saying. So, YES I'm thankful that this dance school is, thus far, accepting of what Sophie can do - but, at the same time....I'm not stupid, nor am I someone who ignores reality. And the reality is, at some point, Sophie will no longer be able to actually take dance. Yes I know there are other options, and other activities that might be a better fit. But this, right now - THIS is just another manifestation of this constant heartache. I suspect this is something that all special-needs parents experience on a moment-to-moment basis, even as they are trying to put a brave face on things.
Later,
Jen
Saturday, September 7, 2013
Losing "normal"...again
When my younger daughter was diagnosed with a complex, frustrating genetic syndrome shortly after she was born, part of the adjustment process was accepting that her life would probably not follow what most of us would consider a "normal" path. Because of the demands that the syndrome would place on her, and those caring for her, those "normal" things that most of us take for granted - "typical" experiences in school, participation in childhood activities, relationships with other kids, expectations of further education/full-time job/marriage/kids - might be extremely difficult, if not impossible, for Sophie.
So, okay. I've never been someone who felt that the only way to be happy and live a good/fulfilling life was to do the "typical" stuff (even though my own life looks pretty typical). So Sophie will still have a the best life we can manage for her, without making lots of dire predictions. Okay.
Well, it is September of 2013, and guess what? I find myself once again having to accept the loss of "normal" - not in relation to my younger child, but this time with my older daughter, K. She's 14 now. She has been experiencing severe anxiety since earlier this year. We are trying a combination of medication and counseling for her. It is a process, and it takes time.
She is supposed to be a freshman in high school. I say "supposed to be", because she has only been in school for a full day one time - the first day, Aug 21 - because being there for the full day is not possible yet for her.
There are several experiences going on, here. There is her experience, of course; she is fully aware of and concerned about how much school she is missing. She misses her friends. There is an orchestra trip to FL that's happening over the holiday bread in December; I'm sure she is aware, as am I, that if she doesn't start to feel substantially better and get through complete days and weeks of school, she won't be able to go on this trip. She knows this is not a great way to start out a school year. So having those realities running through her head probably isn't too helpful - more stuff to be anxious about, on top of what she already has.
Then there is my experience, as her mother. I never thought of myself as a high-pressure parent. I'm not a parent who is stuck on having her kids make straight A's, go to some high-falutin' university, and conquer the world. At this point, though, I am having to once again reconfigure even the "normal" that I had assumed was possible, obtainable, expected for my typical, no-diagnosis-necessary (I thought) older daughter. She wants to do things with her friends - but at the moment and for the foreseeable future, she finds it daunting to even leave the house, which means that all those fun activities kids her age do - going up to the mall, going to the football game, going to Homecoming in a few weeks....may not happen, because of this anxiety. She spent the summer, for the most part, in her room. I would have taken her and friends to the mall, to the beach - but that would have meant leaving the house.
I feel like I have gone from having one special-needs-child with an adjusted future, to now having two kids who are having to deal with diagnoses that take them down some different paths. Some "not typical paths". And you know what? Even though I have been through this once before, this process of having to reconfigure what "normal" would look like - this STILL SUCKS. It just does. I am already tired of watching everyone else's typical kids freely do things that Sophie finds impossible. And now, with K, there is once again the absolute heartache of wondering what her high school years will be like and if there will be the same measure of good things in these years as there is for other kids. I just would like those years to be, well, "normal". I am still hoping for the best, I still know that treating this anxiety will take time, I know I must be patient, I know that what happens for her in the first few months of high school doesn't necessarily set the pattern for the whole four years - but, I still HATE this. I hate this for her. It still sucks, and it's not fair, and I hate that my kids have to struggle just to do the things that other kids seem to effortlessly do.
So, okay. I've never been someone who felt that the only way to be happy and live a good/fulfilling life was to do the "typical" stuff (even though my own life looks pretty typical). So Sophie will still have a the best life we can manage for her, without making lots of dire predictions. Okay.
Well, it is September of 2013, and guess what? I find myself once again having to accept the loss of "normal" - not in relation to my younger child, but this time with my older daughter, K. She's 14 now. She has been experiencing severe anxiety since earlier this year. We are trying a combination of medication and counseling for her. It is a process, and it takes time.
She is supposed to be a freshman in high school. I say "supposed to be", because she has only been in school for a full day one time - the first day, Aug 21 - because being there for the full day is not possible yet for her.
There are several experiences going on, here. There is her experience, of course; she is fully aware of and concerned about how much school she is missing. She misses her friends. There is an orchestra trip to FL that's happening over the holiday bread in December; I'm sure she is aware, as am I, that if she doesn't start to feel substantially better and get through complete days and weeks of school, she won't be able to go on this trip. She knows this is not a great way to start out a school year. So having those realities running through her head probably isn't too helpful - more stuff to be anxious about, on top of what she already has.
Then there is my experience, as her mother. I never thought of myself as a high-pressure parent. I'm not a parent who is stuck on having her kids make straight A's, go to some high-falutin' university, and conquer the world. At this point, though, I am having to once again reconfigure even the "normal" that I had assumed was possible, obtainable, expected for my typical, no-diagnosis-necessary (I thought) older daughter. She wants to do things with her friends - but at the moment and for the foreseeable future, she finds it daunting to even leave the house, which means that all those fun activities kids her age do - going up to the mall, going to the football game, going to Homecoming in a few weeks....may not happen, because of this anxiety. She spent the summer, for the most part, in her room. I would have taken her and friends to the mall, to the beach - but that would have meant leaving the house.
I feel like I have gone from having one special-needs-child with an adjusted future, to now having two kids who are having to deal with diagnoses that take them down some different paths. Some "not typical paths". And you know what? Even though I have been through this once before, this process of having to reconfigure what "normal" would look like - this STILL SUCKS. It just does. I am already tired of watching everyone else's typical kids freely do things that Sophie finds impossible. And now, with K, there is once again the absolute heartache of wondering what her high school years will be like and if there will be the same measure of good things in these years as there is for other kids. I just would like those years to be, well, "normal". I am still hoping for the best, I still know that treating this anxiety will take time, I know I must be patient, I know that what happens for her in the first few months of high school doesn't necessarily set the pattern for the whole four years - but, I still HATE this. I hate this for her. It still sucks, and it's not fair, and I hate that my kids have to struggle just to do the things that other kids seem to effortlessly do.
Sunday, July 14, 2013
Summer
Summer is a very "mixed bag", I think, for parents of special-needs kids.
In one sense, it is definitely a break, a much-needed break, from the school environment and all that that environment means, for parents of children with special needs. Since she is at home, I know obviously where she is and I am assured that she is not around any unnecessary food and/or people/kids who will not treat her appropriately. I still worry about whether she is losing some of what she had been learning, in math skills especially, but there hasn't been too much regression in skills over summers so far, so I'm not too concerned.
However, I know Sophie misses the constant activity and the routine of the school day, and she also misses being around other kids. So for her, summer isn't always a great thing.
Summer is a time of year that seems to make it especially noticeable how challenging it is for children-with-special needs to have true "friends". By "friends" I guess I am thinking back to my own childhood, and how I and my neighborhood friends used to spend our days - roaming the neighborhood, going in and out of each others' houses, going to the pool, playing hide-and-seek. While I do understand that times have changed, and things are not the same as they were 30 years ago, still I clearly see that for Sophie, this ease of having friends is not immediately possible.
For a "typical" child to have a friendship with Sophie - one which looks anything like that between two "typical" children - they would be required to meet her in the middle, somewhere between their cognitive level, and hers. Sophie is 9, but has fun doing things that I suspect are more enjoyable for kids a year-or-two-younger. So while I would dearly love for my wonderful, funny, sweet daughter to have true friends, I would be surprised at this point to come upon any "typical" child who knows how - or has been taught how - to adjust their play skills so that both they and Sophie have fun. While I do notice and it breaks my heart, I sincerely hope that Sophie does not notice the neighborhood kids playing, choosing to play without her. If she does notice, I hope and pray that she doesn't understand it enough that it hurts her. I can't force kids to play with her, and I am too wary of kids being mean to her (which, again, I notice even if she doesn't) to want to push the issue.
School districts these days, for the most part, are instructed to practice the concept of "inclusion", where children with a diagnosis are still able to spend part of their day in the classroom with their same-age "typical" peers. And for the most part, this is a good thing. Unfortunately, though, there is still a piece missing in the inclusion effort, and that is, teaching "typical" children how to meet their special-needs peers halfway, in terms of spending enjoyable time together. Sophie does not often have kids to play with, at recess time at school. I have images of her standing by herself while outside. Micro-managing her entire school day, and/or forcing other kids to play with her by demanding the school do something, seems to be the solutions that jump to mind. Not the greatest solutions, and she does seem to have days where she plays with kids, so....
Here is a "for-instance", of how one child can learn how to interact with a special-needs child: Sophie spends part of every school day in the Intervention Room, which is where special-needs kids spend time learning the subjects which they need taught at a pace different from their mainstream peers. In Sophie's room there is a student who in non-verbal and is in a wheelchair. "Typical" children would take one look at her and assume that there is no way for them to interact with her in a positive, "play" manner - but as I learned, they would be wrong. Sophie is high-functioning enough to be able to help out, in the Intervention Room, in small ways. One of the ways she helps with this particular student is by pushing her around the room, in her wheelchair, when the student becomes upset. It seems that this student prefers movement, sound, action around her - it is enjoyable for her and without it, she often starts to cry. Is this something that "typical" students could help with? Yes, in a supervised way of course. It is a way that they could interact, positively, with a special-needs peer.
Ah summer....supposed to be such a carefree time filled with sunshine and ice-cream cones....doesn't always work that way.
Later,
Jen
In one sense, it is definitely a break, a much-needed break, from the school environment and all that that environment means, for parents of children with special needs. Since she is at home, I know obviously where she is and I am assured that she is not around any unnecessary food and/or people/kids who will not treat her appropriately. I still worry about whether she is losing some of what she had been learning, in math skills especially, but there hasn't been too much regression in skills over summers so far, so I'm not too concerned.
However, I know Sophie misses the constant activity and the routine of the school day, and she also misses being around other kids. So for her, summer isn't always a great thing.
Summer is a time of year that seems to make it especially noticeable how challenging it is for children-with-special needs to have true "friends". By "friends" I guess I am thinking back to my own childhood, and how I and my neighborhood friends used to spend our days - roaming the neighborhood, going in and out of each others' houses, going to the pool, playing hide-and-seek. While I do understand that times have changed, and things are not the same as they were 30 years ago, still I clearly see that for Sophie, this ease of having friends is not immediately possible.
For a "typical" child to have a friendship with Sophie - one which looks anything like that between two "typical" children - they would be required to meet her in the middle, somewhere between their cognitive level, and hers. Sophie is 9, but has fun doing things that I suspect are more enjoyable for kids a year-or-two-younger. So while I would dearly love for my wonderful, funny, sweet daughter to have true friends, I would be surprised at this point to come upon any "typical" child who knows how - or has been taught how - to adjust their play skills so that both they and Sophie have fun. While I do notice and it breaks my heart, I sincerely hope that Sophie does not notice the neighborhood kids playing, choosing to play without her. If she does notice, I hope and pray that she doesn't understand it enough that it hurts her. I can't force kids to play with her, and I am too wary of kids being mean to her (which, again, I notice even if she doesn't) to want to push the issue.
School districts these days, for the most part, are instructed to practice the concept of "inclusion", where children with a diagnosis are still able to spend part of their day in the classroom with their same-age "typical" peers. And for the most part, this is a good thing. Unfortunately, though, there is still a piece missing in the inclusion effort, and that is, teaching "typical" children how to meet their special-needs peers halfway, in terms of spending enjoyable time together. Sophie does not often have kids to play with, at recess time at school. I have images of her standing by herself while outside. Micro-managing her entire school day, and/or forcing other kids to play with her by demanding the school do something, seems to be the solutions that jump to mind. Not the greatest solutions, and she does seem to have days where she plays with kids, so....
Here is a "for-instance", of how one child can learn how to interact with a special-needs child: Sophie spends part of every school day in the Intervention Room, which is where special-needs kids spend time learning the subjects which they need taught at a pace different from their mainstream peers. In Sophie's room there is a student who in non-verbal and is in a wheelchair. "Typical" children would take one look at her and assume that there is no way for them to interact with her in a positive, "play" manner - but as I learned, they would be wrong. Sophie is high-functioning enough to be able to help out, in the Intervention Room, in small ways. One of the ways she helps with this particular student is by pushing her around the room, in her wheelchair, when the student becomes upset. It seems that this student prefers movement, sound, action around her - it is enjoyable for her and without it, she often starts to cry. Is this something that "typical" students could help with? Yes, in a supervised way of course. It is a way that they could interact, positively, with a special-needs peer.
Ah summer....supposed to be such a carefree time filled with sunshine and ice-cream cones....doesn't always work that way.
Later,
Jen
Friday, August 5, 2011
Get S through summer camp: check
Today was S's last day of summer camp. It is somewhat of an accomplishment for both her and us to get through all six weeks successfully. She went to day camp six weeks out of the summer, for four days a week, 8 a.m. until 2 p.m. This being the last day for this summer camp, I now have the few weeks up until school starts to keep her entertained. (Yes, that makes me nervous.)
The staff of this camp are just phenomenal. This is more than your average summer day camp. This particular camp is a program run through our county's Board of Developmental Delay. There are just over 100 spots in this camp, and the application process is on a first-application-received, first-applicant-guaranteed-a-spot basis. I have heard that some parents fill out the application the day they receive it in January, and overnight it to the intake person that day, just to make sure their child gets a spot. The staff members of this camp are special people, because they do what so many people refuse to do - they work one-on-one with children with disabilities, and treat them with respect, kindness, and love. Today being the last day of camp, the campers and counsellors put together a talent show, with each group doing a routine to a M.ichael Jackson song. It was sooooo cute, the kids did so well and had fun. The people working with the kids in this camp didn't look at them and say, 'oh, they can't do that'. They picked a song, practiced with the kids, and put on a well-done show for all the parents. It was truly wonderful to see.
This camp is another reason why we are so, so blessed to live where we live. S does well at this camp, thank God. She does not enjoy the drive there/back home as it highway driving, but she enjoys herself while she is there, and I doubt I could keep her nearly as well entertained and appropriately busy here at home. So this camp ensures her sanity during the summer - and mine.
As I said, the staff of the camp is phenomenal. The lead teachers are all either special-ed teachers or intervention specialists, so they know their way around an IEP/504 plan, and the goals/parameters of those documents are followed and worked on as much as possible over the summer. The counsellors are all college students who are focusing their studies on areas matching the needs of this camp - nursing, special ed, occupational/speech/physical therapy and the like. And yet, this is still very much a summer camp, with all the accompanying craft projects and silly songs and swimming! The kids have a fantastic time in a safe environment where the staff is aware of their challenges yet helps the kids work through those challenges so they can still enjoy themselves. So my daughter, who could not possibly go to a regular summer camp, day-based or otherwise, can still say she is "going to camp" like any other kid.
So days like today are bittersweet. Like other special-needs parents, as my daughter gets older I find myself repeatedly going through the scenario of saying goodbye to people who I have trusted to take care of my daughter, keep her safe, help her learn and develop, and help her have a good time. That is HUGE for any special-needs parent. I hope we will see many of the same counsellors and staff back next summer...but I don't know, maybe we won't. Anyone who sees my daughter for the great person she is, is someone who comes to mean a lot to me - and it is hard to keep saying goodbye to these people. I wonder if they know how meaningful their presence in my daughter's life is? I know they get a paycheck...but believe me, they don't do this job just for that. They do this job because they see in these kids what is so often overlooked by the general public - they see a person.
Thanks for reading.
Later,
Jen
The staff of this camp are just phenomenal. This is more than your average summer day camp. This particular camp is a program run through our county's Board of Developmental Delay. There are just over 100 spots in this camp, and the application process is on a first-application-received, first-applicant-guaranteed-a-spot basis. I have heard that some parents fill out the application the day they receive it in January, and overnight it to the intake person that day, just to make sure their child gets a spot. The staff members of this camp are special people, because they do what so many people refuse to do - they work one-on-one with children with disabilities, and treat them with respect, kindness, and love. Today being the last day of camp, the campers and counsellors put together a talent show, with each group doing a routine to a M.ichael Jackson song. It was sooooo cute, the kids did so well and had fun. The people working with the kids in this camp didn't look at them and say, 'oh, they can't do that'. They picked a song, practiced with the kids, and put on a well-done show for all the parents. It was truly wonderful to see.
This camp is another reason why we are so, so blessed to live where we live. S does well at this camp, thank God. She does not enjoy the drive there/back home as it highway driving, but she enjoys herself while she is there, and I doubt I could keep her nearly as well entertained and appropriately busy here at home. So this camp ensures her sanity during the summer - and mine.
As I said, the staff of the camp is phenomenal. The lead teachers are all either special-ed teachers or intervention specialists, so they know their way around an IEP/504 plan, and the goals/parameters of those documents are followed and worked on as much as possible over the summer. The counsellors are all college students who are focusing their studies on areas matching the needs of this camp - nursing, special ed, occupational/speech/physical therapy and the like. And yet, this is still very much a summer camp, with all the accompanying craft projects and silly songs and swimming! The kids have a fantastic time in a safe environment where the staff is aware of their challenges yet helps the kids work through those challenges so they can still enjoy themselves. So my daughter, who could not possibly go to a regular summer camp, day-based or otherwise, can still say she is "going to camp" like any other kid.
So days like today are bittersweet. Like other special-needs parents, as my daughter gets older I find myself repeatedly going through the scenario of saying goodbye to people who I have trusted to take care of my daughter, keep her safe, help her learn and develop, and help her have a good time. That is HUGE for any special-needs parent. I hope we will see many of the same counsellors and staff back next summer...but I don't know, maybe we won't. Anyone who sees my daughter for the great person she is, is someone who comes to mean a lot to me - and it is hard to keep saying goodbye to these people. I wonder if they know how meaningful their presence in my daughter's life is? I know they get a paycheck...but believe me, they don't do this job just for that. They do this job because they see in these kids what is so often overlooked by the general public - they see a person.
Thanks for reading.
Later,
Jen
Sunday, July 3, 2011
Church and the special-needs community
We are fairly consistent attendees at church, although since our church doesn't have air conditioning and S is somewhat sensitive to being extremely hot, our summer attendance isn't as consistent.
I have sat through many, many, many sermons/homilies in all my years of church-going. I have heard countless sermons about how Christians, the church community, should reach out to and provide for and protect the helpless, the widow, the orphan, the downtrodden. I've heard the Beatitudes read in many a reading during service after service.
Where does the special-needs community fit into all of that "reaching out"? I have yet to hear a priest or reverand or minister include individuals with special-needs, and their families or caregivers, in the groups of people who might be appropriate recipients of the ministries of the church - prayers for healing (if the family wants that), home visits, taking communion to group homes (and don't tell me doing that isn't worth it because the residents of a group home wouldn't understand...yes, they would. In their own way, they would. And even if they didn't, I think God would still approve.). Are individuals with special needs even welcome in a church atmosphere, or would that be frowned upon because they might be seen as "disruptive" because their attempts to communicate or participate might sound a bit different from ours? Heck, there are churches where children aren't always welcome in the sanctuary during services because they make 'too much noise', so I'm thinking having a person with disabilities present during a service, someone who might not be able to fully control their movements or vocalizations, might make some of the congregation uncomfortable. I know our church is handicapped-accessible; most buildings are, these days. But do special-needs-families truly feel welcome, do they truly feel embraced by the various church communities out there?
There are various well-known stories of disabled/chronically ill people in the Bible. In some (perhaps all? can't remember, need to research this) of those stories, the person was healed by Jesus.
The people in the church community today are Jesus' healing hands...yes? It may be necessary to go to the special-needs family, as in many instances it is medically/physically difficult for the family/individual to make their presence felt in the church itself, at services. If they are able to attend, how accepting would we be?
"The King will answer and say to them, 'Truly I say to you, to the extent that you did it to one of these brothers of Mine, even the least of them, you did it to Me.' Matthew 25:40.
Thanks for reading,
Later,
Jen
I have sat through many, many, many sermons/homilies in all my years of church-going. I have heard countless sermons about how Christians, the church community, should reach out to and provide for and protect the helpless, the widow, the orphan, the downtrodden. I've heard the Beatitudes read in many a reading during service after service.
Where does the special-needs community fit into all of that "reaching out"? I have yet to hear a priest or reverand or minister include individuals with special-needs, and their families or caregivers, in the groups of people who might be appropriate recipients of the ministries of the church - prayers for healing (if the family wants that), home visits, taking communion to group homes (and don't tell me doing that isn't worth it because the residents of a group home wouldn't understand...yes, they would. In their own way, they would. And even if they didn't, I think God would still approve.). Are individuals with special needs even welcome in a church atmosphere, or would that be frowned upon because they might be seen as "disruptive" because their attempts to communicate or participate might sound a bit different from ours? Heck, there are churches where children aren't always welcome in the sanctuary during services because they make 'too much noise', so I'm thinking having a person with disabilities present during a service, someone who might not be able to fully control their movements or vocalizations, might make some of the congregation uncomfortable. I know our church is handicapped-accessible; most buildings are, these days. But do special-needs-families truly feel welcome, do they truly feel embraced by the various church communities out there?
There are various well-known stories of disabled/chronically ill people in the Bible. In some (perhaps all? can't remember, need to research this) of those stories, the person was healed by Jesus.
The people in the church community today are Jesus' healing hands...yes? It may be necessary to go to the special-needs family, as in many instances it is medically/physically difficult for the family/individual to make their presence felt in the church itself, at services. If they are able to attend, how accepting would we be?
"The King will answer and say to them, 'Truly I say to you, to the extent that you did it to one of these brothers of Mine, even the least of them, you did it to Me.' Matthew 25:40.
Thanks for reading,
Later,
Jen
Saturday, June 11, 2011
Prader-Willi Syndrome and Inflatables
I am consistently amazed at the things that come up, about which I never would have thought twice if I did not have a child with special needs. The learning curve, as we weave PWS into our lives, has been one of mountainous proportions...or I could say, it is a curve as high and bouncy as the inflatable S tried to scale the other day.
The PTA for my daughters' school has, for the past few years, paid to have four huge inflatable 'things' brought into the cafetorium. Throughout the day, each grade level has a chance to go wild and crazy on these things. The picture below is from Google Images, but there was one of those at the school that day.
Now, the PTA at the school is great. They really do quite a bit for the kids, and provide a great deal of help to all the teachers there. So I don't have a problem with this activity being provided for the school at large, even though there are special-needs-kids in the school population who could not possibly play on these things, for various reasons. When S brought the flyer home announcing this "Fun Day", I know I groaned inwardly and may have done so audibly as well....I just wasn't sure how S would do on these things. Plus, even though there are only two grade levels going through at a time, we're still talking about 200 kids cycling through 4 inflatables over about an hour's time. The noise level is incredible...there are kids moving, running, bouncing, flinging everywhere. They all definitely have fun, but for a child with low muscle tone and poor overall muscle strength, how would this work?
So, I went up to the school Tuesday afternoon, to supervise/help her with this. She was excited! She has been on inflatables before so she is familiar with the sort-of-out-of-control environment that happens to groups of kids when these things are around. So, first she lined up for this rock-wall-climbing thing; squares on the incline to put your foot on, with ropes to pull yourself up. I told her she could try it but if she found she couldn't make it up and over, to just stop and slide down. She did a great job trying, and made it about halfway up - but the combination of trying to balance on the footholds AND pull herself up with the rope was too much. So that one will have to wait 'til she's older and stronger.
Then, she lined up to try this obstacle course thing...have you ever watched that show "Wipe.Out"? This inflatable reminds me of what contestants go through on that show, on a much smaller scale of course!
It looked pretty much like the photo above, although the one at the school had a net roof on it. The beginning is at the left side of the picture. As soon as you get kids moving through it, the whole thing is moving and bopping and you really have to keep your balance. And of course, you have to be able to move fast, or you are going to get squashed by kids starting after you but landing on top of you as you both exit at the same time. Sophie did not enjoy this one either; I give her a lot of credit for wanting to try it, but this is another one that will wait until she's a bit older and stronger!
So I told S that, for that day, she would stick the two inflatable she could go on and enjoy without hurting herself! These were two slides which looked like the top photo, one a little higher than the other. The other students had wait a few seconds longer for her to climb up, and then get situated to slide down, and then "dismount" at the bottom - but it went okay. S enjoyed herself and, oddly enough, did NOT tire herself out as much as I thought she would. I will probably have to go up to the school every time the PTA plans this activity, though - or make it mandatory that an aide stay with her the entire time, I guess. I mean, she can definitely participate on at least some of these - but if she had not been supervised I'm pretty sure she would have gotten hurt.
Another instance of life with PWS - walking that fine line between wanting to have my child participate as much as she's able, yet also wanting her to be safe and/or wanting the rest of the world to just slow down so that she can participate.
Thanks for reading-
Later,
Jen
The PTA for my daughters' school has, for the past few years, paid to have four huge inflatable 'things' brought into the cafetorium. Throughout the day, each grade level has a chance to go wild and crazy on these things. The picture below is from Google Images, but there was one of those at the school that day.
Now, the PTA at the school is great. They really do quite a bit for the kids, and provide a great deal of help to all the teachers there. So I don't have a problem with this activity being provided for the school at large, even though there are special-needs-kids in the school population who could not possibly play on these things, for various reasons. When S brought the flyer home announcing this "Fun Day", I know I groaned inwardly and may have done so audibly as well....I just wasn't sure how S would do on these things. Plus, even though there are only two grade levels going through at a time, we're still talking about 200 kids cycling through 4 inflatables over about an hour's time. The noise level is incredible...there are kids moving, running, bouncing, flinging everywhere. They all definitely have fun, but for a child with low muscle tone and poor overall muscle strength, how would this work?
So, I went up to the school Tuesday afternoon, to supervise/help her with this. She was excited! She has been on inflatables before so she is familiar with the sort-of-out-of-control environment that happens to groups of kids when these things are around. So, first she lined up for this rock-wall-climbing thing; squares on the incline to put your foot on, with ropes to pull yourself up. I told her she could try it but if she found she couldn't make it up and over, to just stop and slide down. She did a great job trying, and made it about halfway up - but the combination of trying to balance on the footholds AND pull herself up with the rope was too much. So that one will have to wait 'til she's older and stronger.
Then, she lined up to try this obstacle course thing...have you ever watched that show "Wipe.Out"? This inflatable reminds me of what contestants go through on that show, on a much smaller scale of course!
It looked pretty much like the photo above, although the one at the school had a net roof on it. The beginning is at the left side of the picture. As soon as you get kids moving through it, the whole thing is moving and bopping and you really have to keep your balance. And of course, you have to be able to move fast, or you are going to get squashed by kids starting after you but landing on top of you as you both exit at the same time. Sophie did not enjoy this one either; I give her a lot of credit for wanting to try it, but this is another one that will wait until she's a bit older and stronger!
So I told S that, for that day, she would stick the two inflatable she could go on and enjoy without hurting herself! These were two slides which looked like the top photo, one a little higher than the other. The other students had wait a few seconds longer for her to climb up, and then get situated to slide down, and then "dismount" at the bottom - but it went okay. S enjoyed herself and, oddly enough, did NOT tire herself out as much as I thought she would. I will probably have to go up to the school every time the PTA plans this activity, though - or make it mandatory that an aide stay with her the entire time, I guess. I mean, she can definitely participate on at least some of these - but if she had not been supervised I'm pretty sure she would have gotten hurt.
Another instance of life with PWS - walking that fine line between wanting to have my child participate as much as she's able, yet also wanting her to be safe and/or wanting the rest of the world to just slow down so that she can participate.
Thanks for reading-
Later,
Jen
Thursday, May 19, 2011
Still recovering
Have you ever gone through surgery, and after that you'll have friends and family say that they wish you a smooth and quick recovery? I know I have said that to people, because I do wish that for them.
I'm not recovering from any surgery, not literally. I'm recovering from more a figurative procedure, where the life I thought I would live was removed, and replaced with a life that I never, ever saw coming.
I think I am still recovering from that day back in 2004, when a voice on the end of my phone line told me that blood tests had confirmed the diagnosis of Prader-Willi Syndrome for our younger daughter. I think I will be recovering from that moment for possibly the rest of my life.
I think my entire universe shifted that day, in that moment. It only took a few seconds for that doctor's voice to say those words...but I will forever be feeling the ripple effect from that. In the space of a few short weeks, from the time S arrived until that phone call, we went from being your average, garden-variety parents to being special-needs parents. I am no longer the person I was, in the early days of that year. I don't know who that old Jen is. I'm not sure I would recognize her. I know I would probably take issue with large chunks of that old Jen's personality.
But, at the same time, I am still "growing into" my new skin. I'm still recovering from the loss of what I thought life with two children would be like. I know, it's been 7 years - that is a long time! But the first year of the PWS diagnosis is incredibly busy. We quickly got involved with taking S to multiple doctors, seeing county service representatives, on and on. We were simultaneously learning about the syndrome, trying to make sure S got enough calories and was growing, parent our older daughter, answer the many questions of friends and family...simply adjust. It was mind-numbing. Shortly after S turned a year old, I began to volunteer for the PWS organization in my state, and that has added a whole extra layer to our PWS journey - a very fulfilling but very time-consuming level. We have planned four fundraisers. I have been a mentor to other newly-diagnosed families. Believe me, I wouldn't trade any of this! I love doing all of this. But I will admit, that it has been an extremely busy seven years. There really has not been much time for "just living", just breathing, just adjusting to this life.
So it occurred to me today that just possibly, I am still recovering from that moment when the PWS reality entered our lives. Maybe that is why some days I just feel numb, or like I could just sit for hours and hours and do nothing else, not even really think about much. Because PWS throws something new at us on a very, very regular basis - which means that even as we are still wrapping our minds around PWS, we are also still having to recalibrate our family life. S isn't finished throwing curveballs at us, because she still has quite a bit of developing to do, so the surprises and challenges will keep coming - without the hope that one day, she'll be fully independent and will be able to handle things on her own. So here we are, with some parts of our future with PWS somewhat predictable...and the rest of it something we'll just have to keep recovering from.
Added on to all of that, is the process of parenting an 11-year-old who looks older every day. She'll be a teenager soon. She'll be wanting to date, sooner than I'm comfortable with. Someday before I know it she'll be driving. Oh, my. By the time AARP comes looking for me, I'll be positively catatonic.
Thanks for reading-
Later,
Jen
I'm not recovering from any surgery, not literally. I'm recovering from more a figurative procedure, where the life I thought I would live was removed, and replaced with a life that I never, ever saw coming.
I think I am still recovering from that day back in 2004, when a voice on the end of my phone line told me that blood tests had confirmed the diagnosis of Prader-Willi Syndrome for our younger daughter. I think I will be recovering from that moment for possibly the rest of my life.
I think my entire universe shifted that day, in that moment. It only took a few seconds for that doctor's voice to say those words...but I will forever be feeling the ripple effect from that. In the space of a few short weeks, from the time S arrived until that phone call, we went from being your average, garden-variety parents to being special-needs parents. I am no longer the person I was, in the early days of that year. I don't know who that old Jen is. I'm not sure I would recognize her. I know I would probably take issue with large chunks of that old Jen's personality.
But, at the same time, I am still "growing into" my new skin. I'm still recovering from the loss of what I thought life with two children would be like. I know, it's been 7 years - that is a long time! But the first year of the PWS diagnosis is incredibly busy. We quickly got involved with taking S to multiple doctors, seeing county service representatives, on and on. We were simultaneously learning about the syndrome, trying to make sure S got enough calories and was growing, parent our older daughter, answer the many questions of friends and family...simply adjust. It was mind-numbing. Shortly after S turned a year old, I began to volunteer for the PWS organization in my state, and that has added a whole extra layer to our PWS journey - a very fulfilling but very time-consuming level. We have planned four fundraisers. I have been a mentor to other newly-diagnosed families. Believe me, I wouldn't trade any of this! I love doing all of this. But I will admit, that it has been an extremely busy seven years. There really has not been much time for "just living", just breathing, just adjusting to this life.
So it occurred to me today that just possibly, I am still recovering from that moment when the PWS reality entered our lives. Maybe that is why some days I just feel numb, or like I could just sit for hours and hours and do nothing else, not even really think about much. Because PWS throws something new at us on a very, very regular basis - which means that even as we are still wrapping our minds around PWS, we are also still having to recalibrate our family life. S isn't finished throwing curveballs at us, because she still has quite a bit of developing to do, so the surprises and challenges will keep coming - without the hope that one day, she'll be fully independent and will be able to handle things on her own. So here we are, with some parts of our future with PWS somewhat predictable...and the rest of it something we'll just have to keep recovering from.
Added on to all of that, is the process of parenting an 11-year-old who looks older every day. She'll be a teenager soon. She'll be wanting to date, sooner than I'm comfortable with. Someday before I know it she'll be driving. Oh, my. By the time AARP comes looking for me, I'll be positively catatonic.
Thanks for reading-
Later,
Jen
Tuesday, April 26, 2011
The long day that might be tomorrow
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
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
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, March 27, 2011
Depends on the listener
Talking about life with S, and about life with Prader-Willi Syndrome, is always influenced by the audience.
I guess this might be obvious, and no surprise. But it is something that really crystallized in my brain just now, as a result of a F.acebook post I just read. Another PWS mom posted a link to an article about a family whose youngest-of-four-children has Down's Syndrome. What surfaced most clearly for me, with this article, is the mom's emphasis on how life with her daughter-with-DS is just...life. It is what it is, and since they have three other children, life is just whatever it is with a house full of children. In other words, their daughter's DS diagnosis doesn't define the family's life, and while the mom does write about it sometimes on her blog, it doesn't direct the blog's content. They live family life just like any other family.
So, given that the article ran in the family's area newspaper, and thus had the general public as it's audience, part of the message here seems to be that children with DS or any diagnosis are children just like any other children, and life with DS is just like "regular" family life. Thus the ultimate, if subconscious, outcome of an article like this might be better overall acceptance of individuals with special needs...and for that, I am intensely grateful to this family and this mom, for putting themselves out there into the public eye.
I kind of wonder, if this mom were trying to raise funds for a DS non-profit, for research or quality-of-life projects, would her message have been different? Because folks, let me tell you - regardless of how smoothly her family has adjusted to her daughter's diagnosis, I bet there are still aspects of DS with which she might wish her daughter didn't have to contend. That's the challenge with education about syndromes which affect children - it is part consolation, part brutally honest education, and all of it is true. Here in my house, because of PWS, our good times with S do happen - and those times are really, really good - and thank God for that because the bad times can be really, really hard.
Talking about Prader-Willi Syndrome, and S's life with it, and our adjustment to it as a family, is very much influenced by my audience. Some examples:
Talking to a parent of one of S's classmates, about an upcoming holiday party: "I have to count S's calorie intake very carefully, so I'd appreciate it if the holiday party treats weren't 100% junkfood. And, please don't offer her seconds."
Talking to the parent of one of S's classmates, about a potential playdate: "Yes, S can come over to play with your child....but, guess what, I have to come with her, for her safety. Plus, here are a few pamphlets for you to read about PWS, before we come over." (I'm not sure I would do the pamphlet thing - but I would have to go with S, and I would have to educate the parent, because American kids in general snack too much so I'm sure that would come up during most playdates.)
Talking to parents of younger children with PWS, sometimes newly diagnosed: "S has done 100% better than we ever expected. Life here is calm, and the food aspect of PWS has been manageable." This is a true statement, for us/S/our family. I'm not going to lay out all the tough parts of PWS to parents who have just started down the PWS path - getting the diagnosis and learning about the syndrome is enough info for them at that point.
Talking to neighbors: "Yes, S can play for a bit....but please do NOT offer her any snacks. Which means, that if your child starts jones-ing for a juicebox, please let me know and I'll take S home."
Talking to S's teachers: "The only thing that is keeping S from having a "negative food episode" is opportunity. She is not to go ANYWHERE in the building unsupervised, and she must be supervised by an adult, not a classmate. If she starts to have a meltdown please do not restrain her, as that only makes it worse."
Talking to any group which is totally unfamiliar with PWS: "Because of PWS my child feels constantly hungry. No, it doesn't matter what or how often she eats. Yes, because of this she potentially might eat until her stomach bursts. Yes this has happened to individuals in the PWS community, with fatal outcomes. No, appetite suppressants do not work, nor does any stomach-altering surgery. Yes, your donations are extremely important, not only for research projects but also for quality-of-life efforts, like PWS-only activities where our kids don't have to worry about pervasive, anxiety-producing food opportunities or gaining 10 pounds in one weekend. Yes, S is doing well but PWS still sucks. No, there is no "cure"....yet."
And those are just some examples....I could think of many more. To fellow families with younger children with PWS, I always want to emphasize the "livability" of PWS - because THAT'S TRUE. You adjust, and it becomes your "normal" as a family. It's do-able, and you will have lots and lots of regular moments with your family. But to the general public? No, this isn't "just like normal life", as most of society knows it. This is hard. My daughter struggles, minute by minute, with what PWS does to her body. She still has a right to, and deserves, acceptance and understanding from society as a whole; but that doesn't change her daily reality, or make it less worthy of funding for quality-of-life funding or research projects.
Thanks for reading!
Later,
Jen
I guess this might be obvious, and no surprise. But it is something that really crystallized in my brain just now, as a result of a F.acebook post I just read. Another PWS mom posted a link to an article about a family whose youngest-of-four-children has Down's Syndrome. What surfaced most clearly for me, with this article, is the mom's emphasis on how life with her daughter-with-DS is just...life. It is what it is, and since they have three other children, life is just whatever it is with a house full of children. In other words, their daughter's DS diagnosis doesn't define the family's life, and while the mom does write about it sometimes on her blog, it doesn't direct the blog's content. They live family life just like any other family.
So, given that the article ran in the family's area newspaper, and thus had the general public as it's audience, part of the message here seems to be that children with DS or any diagnosis are children just like any other children, and life with DS is just like "regular" family life. Thus the ultimate, if subconscious, outcome of an article like this might be better overall acceptance of individuals with special needs...and for that, I am intensely grateful to this family and this mom, for putting themselves out there into the public eye.
I kind of wonder, if this mom were trying to raise funds for a DS non-profit, for research or quality-of-life projects, would her message have been different? Because folks, let me tell you - regardless of how smoothly her family has adjusted to her daughter's diagnosis, I bet there are still aspects of DS with which she might wish her daughter didn't have to contend. That's the challenge with education about syndromes which affect children - it is part consolation, part brutally honest education, and all of it is true. Here in my house, because of PWS, our good times with S do happen - and those times are really, really good - and thank God for that because the bad times can be really, really hard.
Talking about Prader-Willi Syndrome, and S's life with it, and our adjustment to it as a family, is very much influenced by my audience. Some examples:
Talking to a parent of one of S's classmates, about an upcoming holiday party: "I have to count S's calorie intake very carefully, so I'd appreciate it if the holiday party treats weren't 100% junkfood. And, please don't offer her seconds."
Talking to the parent of one of S's classmates, about a potential playdate: "Yes, S can come over to play with your child....but, guess what, I have to come with her, for her safety. Plus, here are a few pamphlets for you to read about PWS, before we come over." (I'm not sure I would do the pamphlet thing - but I would have to go with S, and I would have to educate the parent, because American kids in general snack too much so I'm sure that would come up during most playdates.)
Talking to parents of younger children with PWS, sometimes newly diagnosed: "S has done 100% better than we ever expected. Life here is calm, and the food aspect of PWS has been manageable." This is a true statement, for us/S/our family. I'm not going to lay out all the tough parts of PWS to parents who have just started down the PWS path - getting the diagnosis and learning about the syndrome is enough info for them at that point.
Talking to neighbors: "Yes, S can play for a bit....but please do NOT offer her any snacks. Which means, that if your child starts jones-ing for a juicebox, please let me know and I'll take S home."
Talking to S's teachers: "The only thing that is keeping S from having a "negative food episode" is opportunity. She is not to go ANYWHERE in the building unsupervised, and she must be supervised by an adult, not a classmate. If she starts to have a meltdown please do not restrain her, as that only makes it worse."
Talking to any group which is totally unfamiliar with PWS: "Because of PWS my child feels constantly hungry. No, it doesn't matter what or how often she eats. Yes, because of this she potentially might eat until her stomach bursts. Yes this has happened to individuals in the PWS community, with fatal outcomes. No, appetite suppressants do not work, nor does any stomach-altering surgery. Yes, your donations are extremely important, not only for research projects but also for quality-of-life efforts, like PWS-only activities where our kids don't have to worry about pervasive, anxiety-producing food opportunities or gaining 10 pounds in one weekend. Yes, S is doing well but PWS still sucks. No, there is no "cure"....yet."
And those are just some examples....I could think of many more. To fellow families with younger children with PWS, I always want to emphasize the "livability" of PWS - because THAT'S TRUE. You adjust, and it becomes your "normal" as a family. It's do-able, and you will have lots and lots of regular moments with your family. But to the general public? No, this isn't "just like normal life", as most of society knows it. This is hard. My daughter struggles, minute by minute, with what PWS does to her body. She still has a right to, and deserves, acceptance and understanding from society as a whole; but that doesn't change her daily reality, or make it less worthy of funding for quality-of-life funding or research projects.
Thanks for reading!
Later,
Jen
Friday, March 18, 2011
I'm a Guest Blogger!
Hello all,
Today (Friday, 3/18) I am a Guest Blogger over at Heather's blog "Serve One Another In Love", located at
http://gal513.blogspot.com/.
My post is the first in a new series she is doing, called "My Faith Fridays", and my particular post touches on how being a special-needs parent has affected my faith life. I would love it if you would stop over there and check it out - and leave a comment (either here or there). Heather's blog is very "approachable" and worth reading, I hope you'll check that out too.
Thanks for reading.
Later,
Jen
Today (Friday, 3/18) I am a Guest Blogger over at Heather's blog "Serve One Another In Love", located at
http://gal513.blogspot.com/.
My post is the first in a new series she is doing, called "My Faith Fridays", and my particular post touches on how being a special-needs parent has affected my faith life. I would love it if you would stop over there and check it out - and leave a comment (either here or there). Heather's blog is very "approachable" and worth reading, I hope you'll check that out too.
Thanks for reading.
Later,
Jen
Friday, March 11, 2011
I Am "EveryParent"
I am...
I am every parent, every special-needs parent, whose heart walks around outside their body every moment of the day....and who hopes the world will treat her children kindly.
Later,
Jen
- every parent who has lived through months of being sleep-deprived, living with a newborn.
- every special-needs parent who hopes and prays that other children will be kind to her child.
- every parent who sometimes is convinced her children will be in therapy, blaming mom for everything, by the time they are 25.
- every special-needs parent whose breathing actually stops when they worry about who will take care of their special-needs child, should something happen to them (the parent).
- every parent who finds the belly-laugh giggle of a child to be the most delightful sound ever.
- every special-needs parent who views their child's milestones as true miracles.
- every parent who feels consistenly guilty that their child spends too much time on the computer.
- every special-needs parent who wants to win the lottery, so that they can throw millions of dollars into research involving their child's diagnosis.
- every parent who despairs, some days, that their children will ever get along.
- every special-needs parent who feels like God gave them this particular child to teach them 1.5 million things about life (in addition to the 1.5 million things learned just from parenting, period)
- every parent who rejoices when their children learn how to read.
- every special-needs parent who suspects they may outlive that special-needs child...and their heart breaks at the thought that their older child will then be without their only sibling.
- every parent who notes it as "oh, here comes THAT phase" when their 11-year-old daughter starts insisting that you knock before entering their room.
- every special-needs parent whose spirit is lifted when their older child and their younger special-needs child are actually getting along, and being very kind towards each other.
- every parent who knows that they need to do something for themselves, in order to have the mental and emotional energy to parent well.
I am every parent, every special-needs parent, whose heart walks around outside their body every moment of the day....and who hopes the world will treat her children kindly.
Later,
Jen
Saturday, February 19, 2011
When I exhale
Do you remember that movie, I think it came out in the mid-90's perhaps, it was called "Waiting to Exhale"? I liked the movie, but the thing that has really stuck with me all these years is not the movie's subject but its title.
"Waiting to exhale". What does that phrase mean? I think it means that moment when circumstances in one's life finally ease up - there's money in the bank, or one's body is finally healthy again, or a troubling relationship is either resolved or in permanent, soul-easing disconnect....that moment when the weight which has been hanging over your head like a 9,000 pound anvil, keeping you constantly on edge, finally disappears. And, having been taking short, panicky breaths for hours/days/years, you finally feel like you can fully breathe in...and fully, totally, exhale. The stress melts away from your neck and shoulders, your mind empties for a moment, maybe even you sit down and just sit, and think about absolutely nothing...because God knows your thoughts have been running a mile-a-minute for what feels like eternity.
Do you know when I exhale, on a day-to-day basis?
When my child-with-special-needs is either in the competent care of someone I trust, or when she is finally in bed. When I finally, after a long and emotionally draining day, have a moment to myself to just sit, just think about nothing, just be.
I have to imagine that many parents who have children with special needs may have this same brand of "exhale moments". This is especially true when the child's diagnosis-based behavior issues are becoming or have been severe. Moments like these, when the primary caregiver can "exhale" even for an hour, are also called "respite". Not every parent of a special-needs-child is able to obtain respite, and some who can easily get it, through social services of one kind or another, may even decide they don't need it. But, bluntly speaking, most special-needs parents probably do need respite assistance, and they should always, always use it.
And with all due respect to parents everywhere, please do not tell me that parenting my special-needs child is just like parenting any "normal" child - it isn't. I have one of each - a child with no diagnosis or special need of any kind, and one with Prader-Willi Syndrome. My "normal" child is the older of the two - by 4.5 years - so I was very well aware of what parenting a "normal" child looked like, before S came along. I know for a fact, from second-by-second experience, how very much different it is to be a good parent to S compared to my first 4.5 years of parenting. While I do breathe a bit easier when my older child is finally in bed, it is in NO WAY the same kind of "exhale" I experience once Sophie is finally in bed. Parenting S is a daily emotional roller-coaster. I am almost literally on the edge of my seat, for all the minutes and hours she is at home and awake, not knowing what is going to happen with her next. Is she going to have a planet-sized meltdown about food, about something, about anything? Is she going to go use the bathroom, and end up sitting there picking at her skin if I let her sit too long? Is she going to spend the remainder of the day being exceedingly nasty to me - just because that is part of the PWS behavior issues and for no other reason? She is 7 now, so this is no longer about "it's just a phase" or "it's the terrible twos" or "it's the terrible threes". No, this is part of Prader-Willi Syndrome. Her tantrums can be epic,.they can poison the atmosphere of the entire house (although she seemingly recovers with no residual effects). Her PWS-based behavior issues can be extremely unpleasant to be around, and that is not going to change without medication, I believe. I have been in contact with enough parents who have (even just slightly) older children with PWS, to know that these behaviors are part of the syndrome. So they are here to stay, it's not a phase - or, even if it lessens somewhat, I'm aware that changes in the body or changes in routine or changes in circumstance can bring it on again. It is probably a bit like living with someone who, at the drop of a hat and for no obvious reason, turns on you and becomes verbally abusive. S can and does turn on me, the syndrome causes her emotions to swing from very loving to just plain mean - and she's only 7. I am her primary caregiver, I am with her more than anybody else including her father. I am on the recieving end of whatever mood she's got going, and while I love her and know she's a gift from God, this drains me. Although I expect that I will outlive her, I have many years ahead of me of trying to figure her out, trying to anticipate/head off if I can, the things that set her off.
I have many days ahead, of waiting to exhale.
Later,
Jen
"Waiting to exhale". What does that phrase mean? I think it means that moment when circumstances in one's life finally ease up - there's money in the bank, or one's body is finally healthy again, or a troubling relationship is either resolved or in permanent, soul-easing disconnect....that moment when the weight which has been hanging over your head like a 9,000 pound anvil, keeping you constantly on edge, finally disappears. And, having been taking short, panicky breaths for hours/days/years, you finally feel like you can fully breathe in...and fully, totally, exhale. The stress melts away from your neck and shoulders, your mind empties for a moment, maybe even you sit down and just sit, and think about absolutely nothing...because God knows your thoughts have been running a mile-a-minute for what feels like eternity.
Do you know when I exhale, on a day-to-day basis?
When my child-with-special-needs is either in the competent care of someone I trust, or when she is finally in bed. When I finally, after a long and emotionally draining day, have a moment to myself to just sit, just think about nothing, just be.
I have to imagine that many parents who have children with special needs may have this same brand of "exhale moments". This is especially true when the child's diagnosis-based behavior issues are becoming or have been severe. Moments like these, when the primary caregiver can "exhale" even for an hour, are also called "respite". Not every parent of a special-needs-child is able to obtain respite, and some who can easily get it, through social services of one kind or another, may even decide they don't need it. But, bluntly speaking, most special-needs parents probably do need respite assistance, and they should always, always use it.
And with all due respect to parents everywhere, please do not tell me that parenting my special-needs child is just like parenting any "normal" child - it isn't. I have one of each - a child with no diagnosis or special need of any kind, and one with Prader-Willi Syndrome. My "normal" child is the older of the two - by 4.5 years - so I was very well aware of what parenting a "normal" child looked like, before S came along. I know for a fact, from second-by-second experience, how very much different it is to be a good parent to S compared to my first 4.5 years of parenting. While I do breathe a bit easier when my older child is finally in bed, it is in NO WAY the same kind of "exhale" I experience once Sophie is finally in bed. Parenting S is a daily emotional roller-coaster. I am almost literally on the edge of my seat, for all the minutes and hours she is at home and awake, not knowing what is going to happen with her next. Is she going to have a planet-sized meltdown about food, about something, about anything? Is she going to go use the bathroom, and end up sitting there picking at her skin if I let her sit too long? Is she going to spend the remainder of the day being exceedingly nasty to me - just because that is part of the PWS behavior issues and for no other reason? She is 7 now, so this is no longer about "it's just a phase" or "it's the terrible twos" or "it's the terrible threes". No, this is part of Prader-Willi Syndrome. Her tantrums can be epic,.they can poison the atmosphere of the entire house (although she seemingly recovers with no residual effects). Her PWS-based behavior issues can be extremely unpleasant to be around, and that is not going to change without medication, I believe. I have been in contact with enough parents who have (even just slightly) older children with PWS, to know that these behaviors are part of the syndrome. So they are here to stay, it's not a phase - or, even if it lessens somewhat, I'm aware that changes in the body or changes in routine or changes in circumstance can bring it on again. It is probably a bit like living with someone who, at the drop of a hat and for no obvious reason, turns on you and becomes verbally abusive. S can and does turn on me, the syndrome causes her emotions to swing from very loving to just plain mean - and she's only 7. I am her primary caregiver, I am with her more than anybody else including her father. I am on the recieving end of whatever mood she's got going, and while I love her and know she's a gift from God, this drains me. Although I expect that I will outlive her, I have many years ahead of me of trying to figure her out, trying to anticipate/head off if I can, the things that set her off.
I have many days ahead, of waiting to exhale.
Later,
Jen
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