*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today was the last day for one of my clients, as he's transitioning to another day program. And it worked out, because we had a potluck for Halloween. And I am telling you, potlucks are absolutely this guy's favorite thing in life. It was nice to answer all his questions today in the affirmative: Yes, there is a potluck. Yes, you can have food at the potluck. Fruit punch? Sure. More? Sure. Yes, we are going to the party. Yes, everyone will be there. I got to take him on a little goodbye tour around the building, too, which was sweet. I've only known the guy for 9 months or so, but he's been with our agency for years, so there are many friendships that are hard for him to leave. I got a little teary-eyed as I accompanied him on all his goodbyes. But at the same time it was so sweet to see the community that has developed around him.
And so I will end the month of daily blogging on that note: a goodbye, and a sweet community to be a part of. Thanks for reading :-)
Wednesday, October 31, 2012
Tuesday, October 30, 2012
31 for 21: Legacy
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
2nd to last "31 for 21" blog, and I was having trouble thinking what to write about. Nine years ago today, my grandparents were in a fatal car accident - my grandma died that day and my grandpa a week later. And October 30th will always, I think, sort of be about that.
Today wasn't all that hard. I went to the cemetery this morning, cried a little bit, and then went to work as normal. I thought about my grandparents often, especially whenever I wrote the date on anything, but mostly it was just a pretty normal day. It was actually a really GOOD day, as far as work goes, which hasn't happened in a little while.
I asked my mom tonight if there was any history of my grandparents having worked with people with disabilities, so I could somehow work that into the blog. No such luck. My grandpa was a well-known radio DJ in Phoenix for several decades, and he frequently did fundraising for different organizations, including Gompers Habilitation Center, but that was the extent of his involvement. My grandma was committed to a tutoring program with kids who needed her help, but not people with disabilities per se.
So it's official: I'm not continuing some sort of family legacy in the work that I do. But I do know that my grandparents contributed to the person I am today, probably in bigger ways than I know. And that person that they poured into for 20 years before their death happens to have the privilege of pouring into 17 clients each day. I pray I'd do that well. First and foremost, I want the Lord to be honored in the work that I do. But today, I thought a little bit also about wanting to honor the memory of my grandparents. I think they'd want me to work hard and well, and I wish they could see me try.
2nd to last "31 for 21" blog, and I was having trouble thinking what to write about. Nine years ago today, my grandparents were in a fatal car accident - my grandma died that day and my grandpa a week later. And October 30th will always, I think, sort of be about that.
Today wasn't all that hard. I went to the cemetery this morning, cried a little bit, and then went to work as normal. I thought about my grandparents often, especially whenever I wrote the date on anything, but mostly it was just a pretty normal day. It was actually a really GOOD day, as far as work goes, which hasn't happened in a little while.
I asked my mom tonight if there was any history of my grandparents having worked with people with disabilities, so I could somehow work that into the blog. No such luck. My grandpa was a well-known radio DJ in Phoenix for several decades, and he frequently did fundraising for different organizations, including Gompers Habilitation Center, but that was the extent of his involvement. My grandma was committed to a tutoring program with kids who needed her help, but not people with disabilities per se.
So it's official: I'm not continuing some sort of family legacy in the work that I do. But I do know that my grandparents contributed to the person I am today, probably in bigger ways than I know. And that person that they poured into for 20 years before their death happens to have the privilege of pouring into 17 clients each day. I pray I'd do that well. First and foremost, I want the Lord to be honored in the work that I do. But today, I thought a little bit also about wanting to honor the memory of my grandparents. I think they'd want me to work hard and well, and I wish they could see me try.
Monday, October 29, 2012
31 for 21: Good Choices
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today, I went in to work a bit wary, based on how last week had gone. I also went in hopeful that today would be better. It was. It was still hard, but much better. And in some cases, I just had to make choices that would MAKE it better.
1) There was a dog show this afternoon at 12:30. Really great - a group of trainers and their dogs who do little mini choreographed routines to music. It took place in our back lawn, to which our senior room's patio faces. So we got all of our clients out on the patio, even the ones who initially didn't want to. All my staff were there too. I COULD have taken that time to leave my clients in the capable hands of the staff on the patio and return inside for some much-needed paperwork time. But instead, I sat! I sat with everyone else, and enjoyed watching this feel-good event. Even better was seeing my clients get to meet and pet the dogs afterward. My paperwork didn't get tackled, but I got to really enjoy myself for a portion of the day. A good choice.
2) While changing one of the clients at the end of the day, I was pretty exhausted and feeling a little rushed. But I decided to joke with him, and it was a good choice. I asked him if I could take a nap on the changing table, if he would keep it a secret. He said he would definitely tell. I told him my boss already went home for the day and that I was pretty sure he didn't have his phone number. He said he'd write to him, even though he doesn't know how to write, he'd figure it out. I told him that I'd really thought he was on my side, but he definitely isn't. I then asked if he would also tattle if I took off my shoes, took off my badge, talked on my cell phone, or anything else that might break policy. He said he would definitely tell on me. I told him it sounded like I'd better behave, he said that was right. I laughed, he laughed, it was a good choice.
3) At the very end of the day, all but maybe 6 of the clients had already left for home. I'd finished essential paperwork but had loads of non-essential paperwork to work on, paperwork that will be essential tomorrow. I also had a client sitting with his Bible open on his wheelchair tray, looking expectantly toward me. I chose to read with that client, and it was a good choice. I read Proverbs 29 to him, and so got to end my day reading truth instead of cramming as much paperwork as I could into the last few minutes. It was a good choice.
Good choices don't always happen. I'm glad that today some did.
Today, I went in to work a bit wary, based on how last week had gone. I also went in hopeful that today would be better. It was. It was still hard, but much better. And in some cases, I just had to make choices that would MAKE it better.
1) There was a dog show this afternoon at 12:30. Really great - a group of trainers and their dogs who do little mini choreographed routines to music. It took place in our back lawn, to which our senior room's patio faces. So we got all of our clients out on the patio, even the ones who initially didn't want to. All my staff were there too. I COULD have taken that time to leave my clients in the capable hands of the staff on the patio and return inside for some much-needed paperwork time. But instead, I sat! I sat with everyone else, and enjoyed watching this feel-good event. Even better was seeing my clients get to meet and pet the dogs afterward. My paperwork didn't get tackled, but I got to really enjoy myself for a portion of the day. A good choice.
2) While changing one of the clients at the end of the day, I was pretty exhausted and feeling a little rushed. But I decided to joke with him, and it was a good choice. I asked him if I could take a nap on the changing table, if he would keep it a secret. He said he would definitely tell. I told him my boss already went home for the day and that I was pretty sure he didn't have his phone number. He said he'd write to him, even though he doesn't know how to write, he'd figure it out. I told him that I'd really thought he was on my side, but he definitely isn't. I then asked if he would also tattle if I took off my shoes, took off my badge, talked on my cell phone, or anything else that might break policy. He said he would definitely tell on me. I told him it sounded like I'd better behave, he said that was right. I laughed, he laughed, it was a good choice.
3) At the very end of the day, all but maybe 6 of the clients had already left for home. I'd finished essential paperwork but had loads of non-essential paperwork to work on, paperwork that will be essential tomorrow. I also had a client sitting with his Bible open on his wheelchair tray, looking expectantly toward me. I chose to read with that client, and it was a good choice. I read Proverbs 29 to him, and so got to end my day reading truth instead of cramming as much paperwork as I could into the last few minutes. It was a good choice.
Good choices don't always happen. I'm glad that today some did.
Sunday, October 28, 2012
31 for 21: Community
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Since yesterday was video day, I waited til today to really talk about yesterday's Down syndrome walk. And because today gets extremely busy starting in about 20 minutes, I'm getting my blogging done early.
Arizona's Step Up for Down Syndrome walk was done in conjunction with Arizona State University's homecoming parade. ASU happens to be my alma mater, so I was excited to be there for multiple reasons. And I thought it was a really cool way to do the Down syndrome walk. These walks are about raising both money and awareness, and yet, when done on their own, I am not sure if the awareness part happens quite as much. This was cool because the Down Syndrome Network got to actually be IN the parade. I'm pretty sure we were actually the largest group that walked in it. And so kids and adults with Down syndrome, and their family and friends and advocates, got to walk down a street with people cheering on either side. This is part of the reason I posted the video yesterday that I did (see the post "Special Olympics"). It's great when there is POSITIVE attention directed toward these folks. It's even greater when that attention was not directed at them because they have Down syndrome but because they were in a parade. They were just like any other float in the parade, just like any other group (except, in my opinion, more impressive).
I was talking with the friend that came with me, about the importance of this community of support for people with Down syndrome. And I read elsewhere online, probably in another 31 for 21 blog, about how it should be mandatory for physicians to hand out information about Down syndrome networks like this local Arizona one, immediately upon telling a family a diagnosis. We all know that the abortion rate for babies with Down syndrome is appallingly high. Families are told, in many cases, essentially this: "Your baby has Down syndrome. You can keep the baby if you want, but it will be hard. If you want to abort it, here is how." I wish the abortion option was non-existent. But even if it is still on the table, the conversation really must go more like this: "Your baby has Down syndrome. There is a tremendous network of support for families such as yours. We encourage you to contact this group with your questions and concerns, and to get to know some of these families and their children. If you keep this baby, you will absolutely not walk this road alone."
The families I walked with yesterday did not have the attitude of victims, of people afflicted with some tragic circumstance. They walked triumphantly and joyfully. Their kids were full of smiles. The siblings of the kids with Down syndrome were having a blast and were so very proud of their brothers and sisters. The parents greeted each other as friends. And the ASU community was incredibly supportive. What a sweet way to spend a Saturday morning.
Since yesterday was video day, I waited til today to really talk about yesterday's Down syndrome walk. And because today gets extremely busy starting in about 20 minutes, I'm getting my blogging done early.
Arizona's Step Up for Down Syndrome walk was done in conjunction with Arizona State University's homecoming parade. ASU happens to be my alma mater, so I was excited to be there for multiple reasons. And I thought it was a really cool way to do the Down syndrome walk. These walks are about raising both money and awareness, and yet, when done on their own, I am not sure if the awareness part happens quite as much. This was cool because the Down Syndrome Network got to actually be IN the parade. I'm pretty sure we were actually the largest group that walked in it. And so kids and adults with Down syndrome, and their family and friends and advocates, got to walk down a street with people cheering on either side. This is part of the reason I posted the video yesterday that I did (see the post "Special Olympics"). It's great when there is POSITIVE attention directed toward these folks. It's even greater when that attention was not directed at them because they have Down syndrome but because they were in a parade. They were just like any other float in the parade, just like any other group (except, in my opinion, more impressive).
I was talking with the friend that came with me, about the importance of this community of support for people with Down syndrome. And I read elsewhere online, probably in another 31 for 21 blog, about how it should be mandatory for physicians to hand out information about Down syndrome networks like this local Arizona one, immediately upon telling a family a diagnosis. We all know that the abortion rate for babies with Down syndrome is appallingly high. Families are told, in many cases, essentially this: "Your baby has Down syndrome. You can keep the baby if you want, but it will be hard. If you want to abort it, here is how." I wish the abortion option was non-existent. But even if it is still on the table, the conversation really must go more like this: "Your baby has Down syndrome. There is a tremendous network of support for families such as yours. We encourage you to contact this group with your questions and concerns, and to get to know some of these families and their children. If you keep this baby, you will absolutely not walk this road alone."
The families I walked with yesterday did not have the attitude of victims, of people afflicted with some tragic circumstance. They walked triumphantly and joyfully. Their kids were full of smiles. The siblings of the kids with Down syndrome were having a blast and were so very proud of their brothers and sisters. The parents greeted each other as friends. And the ASU community was incredibly supportive. What a sweet way to spend a Saturday morning.
Saturday, October 27, 2012
31 for 21: Special Olympics
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
For anyone reading my blog daily, please know that this morning DID help. It was such fun to walk with the Down syndrome Network in the parade, fun to spend time with my Bible and a good friend before the parade, lovely to still have many hours of this Saturday ahead of me. I have high hopes that I can start next week with a different mindset than I ended this last one with.
And now, because it's Saturday and I've made that the day where I just mostly post a video on the blog so I don't have to think too hard...here's today's video. I love this one, it gives me chills.
For anyone reading my blog daily, please know that this morning DID help. It was such fun to walk with the Down syndrome Network in the parade, fun to spend time with my Bible and a good friend before the parade, lovely to still have many hours of this Saturday ahead of me. I have high hopes that I can start next week with a different mindset than I ended this last one with.
And now, because it's Saturday and I've made that the day where I just mostly post a video on the blog so I don't have to think too hard...here's today's video. I love this one, it gives me chills.
I wish more of our looking and staring was like that. If you haven't been to a Special Olympics event, please find one and attend one day. I guarantee you'll be impressed.
Happy Saturday!
Friday, October 26, 2012
31 for 21: Too Tired
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Ok, so I mostly forgot about blogging until right now, and need to be up at 5 tomorrow. So this is titled "too tired" for 2 reasons.
1) I felt "too tired" today - not really physically, as I had actually gotten a good night's sleep and had a fairly large mocha before work. But I was tired of everybody and everything at work (I'm 99.9% sure this is just temporary). There were some really fun moments with our Halloween festivities, but the day-to-day stuff in the room just exhausted me. I didn't want to take an hour convincing a client to open her mouth so I could feed her her lunch. I didn't want to do the extra toileting for people that I always do on Fridays when we're one staff short. I didn't want to be the only one who seems capable of pressing play on a DVD during movie time or of answering the phone when it rings. I was worn out, frustrated, frazzled, and disappointed in myself for the way I was responding to the people and situations around me.
2) I'm "too tired" right now to write much more. BUT the reason I need to be up early is to walk in the "Step Up for Down Syndrome" walk, which happens to be coinciding with ASU's Homecoming Parade. So I get to walk down my favorite Tempe streets with an organization I believe in, and I get to do so with a dear friend.
I'm very much hoping tomorrow will be a good reminder of just how glad I am to be involved in the disability community. Today was one of those days that I sort of forgot what I was in this for. I need to recalibrate. And more importantly, I need to remind myself of the provision I have in the Lord. He has given me everything I need for life and godliness, and that includes the ability to work joyfully and without complaint at a job I love, even when I don't like it much on a given day. I can not only work joyfully and without complaint, but I can and should do this to the glory of the Lord. Praying that would be more true of me next week, and that tomorrow - so long as I'm not too tired - will be helpful in recharging me.
Ok, so I mostly forgot about blogging until right now, and need to be up at 5 tomorrow. So this is titled "too tired" for 2 reasons.
1) I felt "too tired" today - not really physically, as I had actually gotten a good night's sleep and had a fairly large mocha before work. But I was tired of everybody and everything at work (I'm 99.9% sure this is just temporary). There were some really fun moments with our Halloween festivities, but the day-to-day stuff in the room just exhausted me. I didn't want to take an hour convincing a client to open her mouth so I could feed her her lunch. I didn't want to do the extra toileting for people that I always do on Fridays when we're one staff short. I didn't want to be the only one who seems capable of pressing play on a DVD during movie time or of answering the phone when it rings. I was worn out, frustrated, frazzled, and disappointed in myself for the way I was responding to the people and situations around me.
2) I'm "too tired" right now to write much more. BUT the reason I need to be up early is to walk in the "Step Up for Down Syndrome" walk, which happens to be coinciding with ASU's Homecoming Parade. So I get to walk down my favorite Tempe streets with an organization I believe in, and I get to do so with a dear friend.
I'm very much hoping tomorrow will be a good reminder of just how glad I am to be involved in the disability community. Today was one of those days that I sort of forgot what I was in this for. I need to recalibrate. And more importantly, I need to remind myself of the provision I have in the Lord. He has given me everything I need for life and godliness, and that includes the ability to work joyfully and without complaint at a job I love, even when I don't like it much on a given day. I can not only work joyfully and without complaint, but I can and should do this to the glory of the Lord. Praying that would be more true of me next week, and that tomorrow - so long as I'm not too tired - will be helpful in recharging me.
Thursday, October 25, 2012
31 for 21: Not About Me
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
If I'm perfectly honest, today was not one of my favorite birthdays. It ended well, dinner with two of my best friends, good conversation and delicious food. But the rest of the day was, well, just sort of mediocre. I am not a huge attention-seeker, but that doesn't mean I'm not an attention-DESIRER, especially on my birthday. And my birthday just sort of seemed like an afterthought throughout the work day. The clients were hardly aware of it, and the staff didn't go out of their way. There were a few sweet moments, but mostly it was just a normal day. And it was not absent of conflicts, of really frustrating moments with the clients,of growing weary of seeing some staff not work their hardest. Just a normal day.
Then in one of my sessions, my little client had had her routine messed with shortly before I arrived, which in turn caused her to bang her head on furniture, scream, scratch, pinch, slap, and hit me with a blanket and a pillow, while saying, 'Hit Krista with a pillow? Hit Krista with blanket?" Sigh. Happy birthday to me.
But you know what? It really isn't about me. Work is not about me. It's about the clients. And conflicts were resolved. And that session? Turned out it brought out some sort of emergency-creativity in me and turned into a really awesome music therapy process with that kid.
And more importantly, life isn't about me. I should really only want any positive attention directed away from me and toward the Lord. Anything else sort of teeters on a dangerous border of pride and selfishness and idolatry.
I love the verses I read this morning, verses found right in the midst of Job's ongoing reasoning and questioning of why the Lord has afflicted him:
"You clothed me with skin and flesh, and knit me together with bones and sinews. You have granted me life and steadfast love, and your care has preserved my spirit." - Job 10:11-12
What else do I need? I have a Lord who created me, granted me life and steadfast love, and preserves my spirit through His care. And tomorrow will be another day much like today, and it also will not revolve around me. And let's be honest, that is absolutely as it should be.
If I'm perfectly honest, today was not one of my favorite birthdays. It ended well, dinner with two of my best friends, good conversation and delicious food. But the rest of the day was, well, just sort of mediocre. I am not a huge attention-seeker, but that doesn't mean I'm not an attention-DESIRER, especially on my birthday. And my birthday just sort of seemed like an afterthought throughout the work day. The clients were hardly aware of it, and the staff didn't go out of their way. There were a few sweet moments, but mostly it was just a normal day. And it was not absent of conflicts, of really frustrating moments with the clients,of growing weary of seeing some staff not work their hardest. Just a normal day.
Then in one of my sessions, my little client had had her routine messed with shortly before I arrived, which in turn caused her to bang her head on furniture, scream, scratch, pinch, slap, and hit me with a blanket and a pillow, while saying, 'Hit Krista with a pillow? Hit Krista with blanket?" Sigh. Happy birthday to me.
But you know what? It really isn't about me. Work is not about me. It's about the clients. And conflicts were resolved. And that session? Turned out it brought out some sort of emergency-creativity in me and turned into a really awesome music therapy process with that kid.
And more importantly, life isn't about me. I should really only want any positive attention directed away from me and toward the Lord. Anything else sort of teeters on a dangerous border of pride and selfishness and idolatry.
I love the verses I read this morning, verses found right in the midst of Job's ongoing reasoning and questioning of why the Lord has afflicted him:
"You clothed me with skin and flesh, and knit me together with bones and sinews. You have granted me life and steadfast love, and your care has preserved my spirit." - Job 10:11-12
What else do I need? I have a Lord who created me, granted me life and steadfast love, and preserves my spirit through His care. And tomorrow will be another day much like today, and it also will not revolve around me. And let's be honest, that is absolutely as it should be.
Wednesday, October 24, 2012
31 for 21: Voting
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today I had a client ask, "how can I vote?" Wow, good question, was what I wanted to say. Thankfully, she does have a state-issued id card so I could use that number and her name and birthdate to find out if she was a registered voter. She is! Which...puts the pressure on the rest of us.
Just another example of how so many things, for people with disabilities, are just so much more complicated to accomplish. What you and I can do on our way to work, this person needs to have much assistance to complete. We need to decide who can take her and how, we need to be sure that whoever takes her is able to assist her without influencing her vote. She'll need that person's help to push her wheelchair from point A to point B and to just sort of navigate the process.
And that person might be me, the jury's still out. But even if it isn't me, I feel sort of a burden to at least be sure she's informed. One of our office folks brought copies of some voter guide type stuff to give to her today, which is a great start. Since I have her in the room with me for 8 hours a day 5 days a week leading up to the election, I feel like we should spend some of that time talking about propositions and legislative candidates and of course our choices for president. Gets a little touchy because based on her party affiliation, I'm fairly certain we would not vote similarly. So I'll need to be careful what I say and how. I think she's the only registered voter out of my clients, but why not make it an educational thing for the whole room?
I have much research to do! I was already feeling behind on researching ballot items for myself, now I have another person to consider. But it will all be worth it if I get to see her with an "I voted today" sticker and know that somehow we made this happen.
Today I had a client ask, "how can I vote?" Wow, good question, was what I wanted to say. Thankfully, she does have a state-issued id card so I could use that number and her name and birthdate to find out if she was a registered voter. She is! Which...puts the pressure on the rest of us.
Just another example of how so many things, for people with disabilities, are just so much more complicated to accomplish. What you and I can do on our way to work, this person needs to have much assistance to complete. We need to decide who can take her and how, we need to be sure that whoever takes her is able to assist her without influencing her vote. She'll need that person's help to push her wheelchair from point A to point B and to just sort of navigate the process.
And that person might be me, the jury's still out. But even if it isn't me, I feel sort of a burden to at least be sure she's informed. One of our office folks brought copies of some voter guide type stuff to give to her today, which is a great start. Since I have her in the room with me for 8 hours a day 5 days a week leading up to the election, I feel like we should spend some of that time talking about propositions and legislative candidates and of course our choices for president. Gets a little touchy because based on her party affiliation, I'm fairly certain we would not vote similarly. So I'll need to be careful what I say and how. I think she's the only registered voter out of my clients, but why not make it an educational thing for the whole room?
I have much research to do! I was already feeling behind on researching ballot items for myself, now I have another person to consider. But it will all be worth it if I get to see her with an "I voted today" sticker and know that somehow we made this happen.
Tuesday, October 23, 2012
31 for 21: Successes
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
This was a day with several noticeable successes, ones that are easy to think of. These days don't happen all the time.
-one client asked me politely to take his cup to the sink. This is a battle we've fought for a LONG time.
-my newest client to the room had a fun conversation with another client in the room who often remains quiet. One of her objectives is to have a polite conversation with a peer each day. Sometimes it feels a little forced as I manipulate things to sort of place people in conversations with one another. This one, though, happened all on its own. The newer client wanted to tell the other one all about every sibling, and was thrilled to find out that this other client had the same name as one of her sisters. She relayed most of the conversation through me, but the other client was totally tracking, repeating each name and answering some questions. Client number one's most common question was "Is she surprised???" She would say, "That's my sister's name - is she surprised?" or "His birthday is in September - is she surprised??" It was just such a mutually beneficial interaction that was not at all forced by me, and it was lovely.
-in my session after work, I worked with my 20-year-old client on a song for her mom. We've been writing songs for her mom ever since she was 15, it is probably her favorite music therapy task ever. But it was so fun to note her progress. And in recent months, she's learned to read music (albeit at a very basic level), which is honestly something I hadn't believed she'd conquer. So fun to see these songs become more her and less me as she's able to both play and sing phrases with less and less help from me. This songwriting was far from tiresome and tedious; we both had a blast and she was super psyched.
There may have been more successes, but these ones came to mind. I'm so proud of my folks and thankful to be a witness to the things they are accomplishing!
This was a day with several noticeable successes, ones that are easy to think of. These days don't happen all the time.
-one client asked me politely to take his cup to the sink. This is a battle we've fought for a LONG time.
-my newest client to the room had a fun conversation with another client in the room who often remains quiet. One of her objectives is to have a polite conversation with a peer each day. Sometimes it feels a little forced as I manipulate things to sort of place people in conversations with one another. This one, though, happened all on its own. The newer client wanted to tell the other one all about every sibling, and was thrilled to find out that this other client had the same name as one of her sisters. She relayed most of the conversation through me, but the other client was totally tracking, repeating each name and answering some questions. Client number one's most common question was "Is she surprised???" She would say, "That's my sister's name - is she surprised?" or "His birthday is in September - is she surprised??" It was just such a mutually beneficial interaction that was not at all forced by me, and it was lovely.
-in my session after work, I worked with my 20-year-old client on a song for her mom. We've been writing songs for her mom ever since she was 15, it is probably her favorite music therapy task ever. But it was so fun to note her progress. And in recent months, she's learned to read music (albeit at a very basic level), which is honestly something I hadn't believed she'd conquer. So fun to see these songs become more her and less me as she's able to both play and sing phrases with less and less help from me. This songwriting was far from tiresome and tedious; we both had a blast and she was super psyched.
There may have been more successes, but these ones came to mind. I'm so proud of my folks and thankful to be a witness to the things they are accomplishing!
Monday, October 22, 2012
31 for 21: Meaning It
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
I want to be a person who means what I do. Not just a person who means what I say, but a person who means what I do.
I see varying degrees of this all around me. I see staff members who do the bare minimum of what is asked of them, and that only after being reminded/badgered/threatened (thankfully these staff are not ones who regularly work in my room). I see staff members who get in moods to mean what they do, who go above and beyond for a little while, but are also quite content to not really do anything most of the time.
I see other staff members who are excellent in a certain area - they might prepare lunches and change diapers like their lives depend on it - but they do so in such a way that it is quite clear they are rushing to be done as quickly as possible. The clients become tasks instead of people.
I see elements of this in myself. I want to do everything by the book and sometimes this happens at the expense of spending real quality time with anyone.
And today I saw the sweetest example of one of my staff members who means what she does. She has taken on this little project, completely of her own volition, that I think is simply phenomenal. Two of our clients have spoken of missing loved ones who've passed away. She is helping them to write letters to these loved ones. These are clients who can't actually write on their own, and she is taking the time - a tremendous amount of time - to help them do this and NOT just do it for them. She is first having them dictate what they want to say, helping them to recall sweet memories from their pasts, and she is writing this all down on a sheet of paper. Then she is having them copy what she's written onto another sheet, so it can be their own writing. Both clients require hand-over-hand assistance to do this. Then her eventual goal is to bring in helium balloons, at her own expense, and have them each release a balloon after reading the letter aloud. She started this project last week, with a client to whom she's essentially "assigned" this quarter. And today I caught her doing it with another client. And this client was so proud, and so glad, to be doing this. And she wanted me to read the letter, and it was so very hard not to cry when I did.
I want to be this way. I want to mean what I do. I'm so glad to have this staff member who does.
I want to be a person who means what I do. Not just a person who means what I say, but a person who means what I do.
I see varying degrees of this all around me. I see staff members who do the bare minimum of what is asked of them, and that only after being reminded/badgered/threatened (thankfully these staff are not ones who regularly work in my room). I see staff members who get in moods to mean what they do, who go above and beyond for a little while, but are also quite content to not really do anything most of the time.
I see other staff members who are excellent in a certain area - they might prepare lunches and change diapers like their lives depend on it - but they do so in such a way that it is quite clear they are rushing to be done as quickly as possible. The clients become tasks instead of people.
I see elements of this in myself. I want to do everything by the book and sometimes this happens at the expense of spending real quality time with anyone.
And today I saw the sweetest example of one of my staff members who means what she does. She has taken on this little project, completely of her own volition, that I think is simply phenomenal. Two of our clients have spoken of missing loved ones who've passed away. She is helping them to write letters to these loved ones. These are clients who can't actually write on their own, and she is taking the time - a tremendous amount of time - to help them do this and NOT just do it for them. She is first having them dictate what they want to say, helping them to recall sweet memories from their pasts, and she is writing this all down on a sheet of paper. Then she is having them copy what she's written onto another sheet, so it can be their own writing. Both clients require hand-over-hand assistance to do this. Then her eventual goal is to bring in helium balloons, at her own expense, and have them each release a balloon after reading the letter aloud. She started this project last week, with a client to whom she's essentially "assigned" this quarter. And today I caught her doing it with another client. And this client was so proud, and so glad, to be doing this. And she wanted me to read the letter, and it was so very hard not to cry when I did.
I want to be this way. I want to mean what I do. I'm so glad to have this staff member who does.
Sunday, October 21, 2012
31 for 21: Eden
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today my family got together for a 1-day-belated birthday celebration for my mom and a several-days-early birthday celebration for me. One of several sweet gifts I got was the new Andrew Peterson cd, and in it was this quote by J.R.R. Tolkien about Eden:
"We all long for it, and we are constantly glimpsing it: our whole nature at its best and least corrupted, its gentlest and most humane, is still soaked with a sense of 'exile'."
I find this quote to be so lovely. Today's sermon in church was about the history of "waiting" in the Bible, the many characters, major and minor, who experienced some type of waiting. And so I think this quote especially resonated with me today as I think of longing for heaven, of having to wait. Right now, we are stuck in exile, and it is hard. There are paradises at either end of the Bible, and we are stuck in between them.
I think that as I head back into work, into a week that is sure to be full of unique challenges and frustrating circumstances, it is helpful to remember that there is a paradise awaiting, and that I am waiting for it. When I'm face to face with other sinners, whose sins make my days harder; when I'm face to face with bodies that don't work as they should; when I'm faced with the heartache of people often shunned by society, it is good to remember what I'm waiting for. And when the week is going well, when I'm faced with major triumphs achieved by my clients, with sweet tender moments between them, with those feel-good moments that do inevitably occur even in the hardest of weeks...even then, in those "gentle" and "humane" moments, it is good to remember that this is no Eden, and this is no heaven, and that what I'm waiting for is immeasurably greater. That the one WHOM I'm waiting for is greater still.
"And I heard a loud voice from the throne saying, 'Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." - Revelation 21:3-4
Today my family got together for a 1-day-belated birthday celebration for my mom and a several-days-early birthday celebration for me. One of several sweet gifts I got was the new Andrew Peterson cd, and in it was this quote by J.R.R. Tolkien about Eden:
"We all long for it, and we are constantly glimpsing it: our whole nature at its best and least corrupted, its gentlest and most humane, is still soaked with a sense of 'exile'."
I find this quote to be so lovely. Today's sermon in church was about the history of "waiting" in the Bible, the many characters, major and minor, who experienced some type of waiting. And so I think this quote especially resonated with me today as I think of longing for heaven, of having to wait. Right now, we are stuck in exile, and it is hard. There are paradises at either end of the Bible, and we are stuck in between them.
I think that as I head back into work, into a week that is sure to be full of unique challenges and frustrating circumstances, it is helpful to remember that there is a paradise awaiting, and that I am waiting for it. When I'm face to face with other sinners, whose sins make my days harder; when I'm face to face with bodies that don't work as they should; when I'm faced with the heartache of people often shunned by society, it is good to remember what I'm waiting for. And when the week is going well, when I'm faced with major triumphs achieved by my clients, with sweet tender moments between them, with those feel-good moments that do inevitably occur even in the hardest of weeks...even then, in those "gentle" and "humane" moments, it is good to remember that this is no Eden, and this is no heaven, and that what I'm waiting for is immeasurably greater. That the one WHOM I'm waiting for is greater still.
"And I heard a loud voice from the throne saying, 'Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." - Revelation 21:3-4
Saturday, October 20, 2012
31 for 21: I Am a Music Therapist
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
For video Saturday, I found this funny little video. Probably won't be all that funny to most of you, but just know that music therapists a) have to explain what our profession is a ridiculous amount of times over the course of a lifetime and b) hear NON- music therapy equated with music therapy all the time and have to be patient yet clear as we try to articulate, AGAIN, that we are not music teachers and are certainly not just hospital-harp-players. This is a very real type of conversation that we have often :-) So hopefully everyone watching this will be either educated by it, amused by it, or both.
Friday, October 19, 2012
31 for 21: Boundaries
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
I love my job. I think I've made that pretty clear in my posts. But I am SO glad it has a start and end time. My last job didn't, not really, and it almost destroyed me. This one is stressful in its own ways, certainly chaotic, but it ends. Today I left a meeting at 4:00, not because it was necessarily over (though it was really close) but because it was 4:00 and I'm not supposed to stay past 4. I had a music therapy session to get to, so it was easy to slip out and cite my 2nd job as a legitimate reason, too.
In my last job, even if I left at 4 on a Friday, my work phone was on til 9 and I was always somewhat on edge til at least then. Today, 4:00 hit, and I immediately took off my sweater and swapped out my closed-toed shoes for flip-flops, then stopped for a cold drink at QT. I then sang my heart out with one of my favorite kiddos, then was really really off of work for real. I ran some errands, came home for a very quick dinner, then went to a friend's to make caramel apples. Then we found out that another friend was at the hospital, and caramel apple night turned into a few of us going back and forth to the hospital downtown. And even that was just sweet in its own way. I was able to be totally and completely available and flexible with whatever the evening brought, and I was able to spend real quality time with several friends, even if not under ideal circumstances. Caramel apples still happened eventually, and so did prayer, and so did lots of laughter and lots of good conversations. And I got to hear two little twin baby heartbeats at the hospital, which was an amazing moment.
I guess what I'm trying to say is that I love that I can pour my whole self into work from 8-4, so that that then I can pour my whole self into not-work after that. And that works so much better for me. I honestly don't think I'm much good to anybody if I don't also have time to be a PERSON and not just a supervisor or a music therapist. And some people in my old position are able to MAKE personal time, but I was simply not one of those people.
Boundaries are a pressing issue in the area of care providers for people with disabilities. In college, in my internship, in my workplaces, I have been reminded often of the potential for lightning-speed burnout and the need to care for oneself. And I am living proof of just how much of a difference that can make.
I love my job. I think I've made that pretty clear in my posts. But I am SO glad it has a start and end time. My last job didn't, not really, and it almost destroyed me. This one is stressful in its own ways, certainly chaotic, but it ends. Today I left a meeting at 4:00, not because it was necessarily over (though it was really close) but because it was 4:00 and I'm not supposed to stay past 4. I had a music therapy session to get to, so it was easy to slip out and cite my 2nd job as a legitimate reason, too.
In my last job, even if I left at 4 on a Friday, my work phone was on til 9 and I was always somewhat on edge til at least then. Today, 4:00 hit, and I immediately took off my sweater and swapped out my closed-toed shoes for flip-flops, then stopped for a cold drink at QT. I then sang my heart out with one of my favorite kiddos, then was really really off of work for real. I ran some errands, came home for a very quick dinner, then went to a friend's to make caramel apples. Then we found out that another friend was at the hospital, and caramel apple night turned into a few of us going back and forth to the hospital downtown. And even that was just sweet in its own way. I was able to be totally and completely available and flexible with whatever the evening brought, and I was able to spend real quality time with several friends, even if not under ideal circumstances. Caramel apples still happened eventually, and so did prayer, and so did lots of laughter and lots of good conversations. And I got to hear two little twin baby heartbeats at the hospital, which was an amazing moment.
I guess what I'm trying to say is that I love that I can pour my whole self into work from 8-4, so that that then I can pour my whole self into not-work after that. And that works so much better for me. I honestly don't think I'm much good to anybody if I don't also have time to be a PERSON and not just a supervisor or a music therapist. And some people in my old position are able to MAKE personal time, but I was simply not one of those people.
Boundaries are a pressing issue in the area of care providers for people with disabilities. In college, in my internship, in my workplaces, I have been reminded often of the potential for lightning-speed burnout and the need to care for oneself. And I am living proof of just how much of a difference that can make.
Thursday, October 18, 2012
31 for 21: Not Listening
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
It is frustrating to feel not listened to. I'm sure any parents or teachers reading this can especially relate. It drains energy and patience quickly. Some of the many things I'm tired of saying/resaying:
-I'm tired of telling one client that, no, REALLY, she needs to not have her legs crossed because her doctors have instructed her not to due to circulation problems. That today's latest excuse isn't going to work: just uncross them, NOW.
-I'm tired of telling another client that we don't actually STOCK Dr. Pepper on-site. If she drank one already today, the one that was packed in her lunch box, she is out of luck. There won't be any more...until tomorrow.
-I'm tired of reminding another client that we don't say "HEY" and yell across the room when we have a concern. I'm tired of telling him my name as if we haven't known each other for 9 months.
-I'm tired of explaining and re-explaining forms to a staff member who seems completely unable to follow instructions, or even to read them. Everything seems to be brand new information, and telling her is tiresome because it's hard to believe it will do any good this time if it didn't the ten times before.
But it is good for me to think about how often my clients themselves probably do not feel listened to. They are surrounded, most of the time, at day program and in their group homes, by staff members who are over-worked and under-paid and splitting their attention with other people. Their language is often hard to understand. Many have muscles in their mouths that don't work just right, so every vowel and consonant takes a tremendous amount of effort. Or maybe they have an extremely quiet voice that is physically hard to hear. Maybe they only have a few words, and those words simply aren't enough to articulate complex ideas. Maybe they have no words at all and are left simply to hope that someone will pick up on their facial expressions and body language. Maybe they have no language deficits at all, but have learned over time that people don't often listen because they somehow haven't earned their respect. Whatever the reason, it is good for me to remember. I have the ability to express myself in a million different ways, I have vocabulary to use and a voice and plenty of breath. I have fingers that can type words or hold a pen to write letters, I can even put my words to music to express them differently, more fully. So when there are times when my message seems to fall on deaf ears, I can be thankful for the many times that it doesn't. And I can remember to listen that much more closely to the people around me.
It is frustrating to feel not listened to. I'm sure any parents or teachers reading this can especially relate. It drains energy and patience quickly. Some of the many things I'm tired of saying/resaying:
-I'm tired of telling one client that, no, REALLY, she needs to not have her legs crossed because her doctors have instructed her not to due to circulation problems. That today's latest excuse isn't going to work: just uncross them, NOW.
-I'm tired of telling another client that we don't actually STOCK Dr. Pepper on-site. If she drank one already today, the one that was packed in her lunch box, she is out of luck. There won't be any more...until tomorrow.
-I'm tired of reminding another client that we don't say "HEY" and yell across the room when we have a concern. I'm tired of telling him my name as if we haven't known each other for 9 months.
-I'm tired of explaining and re-explaining forms to a staff member who seems completely unable to follow instructions, or even to read them. Everything seems to be brand new information, and telling her is tiresome because it's hard to believe it will do any good this time if it didn't the ten times before.
But it is good for me to think about how often my clients themselves probably do not feel listened to. They are surrounded, most of the time, at day program and in their group homes, by staff members who are over-worked and under-paid and splitting their attention with other people. Their language is often hard to understand. Many have muscles in their mouths that don't work just right, so every vowel and consonant takes a tremendous amount of effort. Or maybe they have an extremely quiet voice that is physically hard to hear. Maybe they only have a few words, and those words simply aren't enough to articulate complex ideas. Maybe they have no words at all and are left simply to hope that someone will pick up on their facial expressions and body language. Maybe they have no language deficits at all, but have learned over time that people don't often listen because they somehow haven't earned their respect. Whatever the reason, it is good for me to remember. I have the ability to express myself in a million different ways, I have vocabulary to use and a voice and plenty of breath. I have fingers that can type words or hold a pen to write letters, I can even put my words to music to express them differently, more fully. So when there are times when my message seems to fall on deaf ears, I can be thankful for the many times that it doesn't. And I can remember to listen that much more closely to the people around me.
Wednesday, October 17, 2012
31 for 21: Memories
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Memories are an interesting thing. And my world is filled with people who have trouble retaining any of them, and people who store them for themselves and others. Makes for an interesting life...
One of my clients at work has dementia, and it's significant. There are times when it's immensely frustrating, like when she is entirely convinced that we told her we had lemon meriingue pie, and now we are refusing to give it to her. She gets mean and nasty, and she refuses any logic. There are also times when it's just amusing. In the mornings when she arrives, she often says she feels like a celebrity because everyone knows her name! She has no idea that she's spent days, weeks, months, even years with some of these people - to her they are complete strangers who have somehow learned her difficult French last name.
This evening, I ended my day with a music therapy client on the other extreme. This girl remembers everything, and it makes for some fascinating conversations. She knows the names of every Sea World killer whale, when they were born and died, and who's related to whom. She knows the release date of movies and the age of their actors. She has always kept track of all my goings-on, and SHE can actually tell ME things like when I had my last session with another client. Today it seemed especially refreshing. I have been so tired this week, and my final session of the day was like sitting down with an old friend, a friend who knows my past better than I do!
Memories are an interesting thing. And my world is filled with people who have trouble retaining any of them, and people who store them for themselves and others. Makes for an interesting life...
One of my clients at work has dementia, and it's significant. There are times when it's immensely frustrating, like when she is entirely convinced that we told her we had lemon meriingue pie, and now we are refusing to give it to her. She gets mean and nasty, and she refuses any logic. There are also times when it's just amusing. In the mornings when she arrives, she often says she feels like a celebrity because everyone knows her name! She has no idea that she's spent days, weeks, months, even years with some of these people - to her they are complete strangers who have somehow learned her difficult French last name.
This evening, I ended my day with a music therapy client on the other extreme. This girl remembers everything, and it makes for some fascinating conversations. She knows the names of every Sea World killer whale, when they were born and died, and who's related to whom. She knows the release date of movies and the age of their actors. She has always kept track of all my goings-on, and SHE can actually tell ME things like when I had my last session with another client. Today it seemed especially refreshing. I have been so tired this week, and my final session of the day was like sitting down with an old friend, a friend who knows my past better than I do!
Tuesday, October 16, 2012
31 for 21: Person First
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
I'm feeling too tired to be creative, and needing to go to bed too soon to force creativity. So instead, just a little mini diatribe on what we call "person first" terminology.
Thankfully, this is becoming more of a mainstream idea, and the general public seems to have begun to pick up on some positive habits. The idea is this: we describe people with disabilities as people with disabilities, not as disabled people. We describe people with autism as people with autism, not as autistic people. We describe people with Down syndrome as people with Down syndrome, not as "Downs kids," etc. Just as you would not want to describe a loved one as your "cancerous aunt," but instead as an aunt who has cancer, we want to place an emphasis on the fact that a person is a person, before we lump them into a medical category.
I know being politically correct gets tiresome. But I promise: once you begin speaking this way, it will start to become more natural. And once you've been in it as long as I have, your body will litreally cringe when you hear it said the other way. I really do have a physical response to the word "autistic." Just think of your cancerous aunt, and maybe you will understand.
Diatribe now over: bed awaits.
I'm feeling too tired to be creative, and needing to go to bed too soon to force creativity. So instead, just a little mini diatribe on what we call "person first" terminology.
Thankfully, this is becoming more of a mainstream idea, and the general public seems to have begun to pick up on some positive habits. The idea is this: we describe people with disabilities as people with disabilities, not as disabled people. We describe people with autism as people with autism, not as autistic people. We describe people with Down syndrome as people with Down syndrome, not as "Downs kids," etc. Just as you would not want to describe a loved one as your "cancerous aunt," but instead as an aunt who has cancer, we want to place an emphasis on the fact that a person is a person, before we lump them into a medical category.
I know being politically correct gets tiresome. But I promise: once you begin speaking this way, it will start to become more natural. And once you've been in it as long as I have, your body will litreally cringe when you hear it said the other way. I really do have a physical response to the word "autistic." Just think of your cancerous aunt, and maybe you will understand.
Diatribe now over: bed awaits.
Monday, October 15, 2012
31 for 21: Poured Out
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today was a tough one. But it was primarily tough just in the sense of being exhausting and physically challenging. I don't mind those days all that much. Better than days where I mess up, or days where I deal with attitude problems with staff, or days where I think someone is being treated unfairly, or days where we're being monitored by someone from state who is making sure we do everything beyond perfection....etc.
So today was the best kind of tough day I guess. We were short two staff, and the people we got in their place to stay in ratio were not people whom I could ask too much of, for a variety of reasons. So that left my other regular staff pulling some extra weight, and me pulling loads of extra weight. I feel like what I did today was take people to the bathroom. 17 people, 3 times each. I didn't- I did have some help - but that's what it felt like. Aside from one office task I had to try to squeeze into the morning hours, it was kind of like bathroom-bathroom-bathroom-phone-call-bathroom-bathroom-bathroom-instruct-staff-bathroom-bathroom-bathroom-lunch-bathroom-bathroom-bathroom-bathroom-instruct-staff-bathroom-bathroom-bathroom-my lunch-bathroom-bathroom-bathroom-check-on-staff-bathroom-do-everything-replacement-staff-had-left-undone-bathroom-bathroom-bathroom-do-all-my-usual-daily-tasks-crammed-into-30-minutes-finally-go-to-the-bathroom-myself. Objectives were run with the clients, but not well. Conversations were had, but they were rushed. But at the end of the day, everyone was clean and fed and their little take-home sheets were filled out and we'd avoided any disaster. And so I think the day was a success. Not every day is filled with sweet, rewarding, bloggable moments. And yet some days I think it is good to just pour myself out and get little in return. It's good to remember that I am called to humble myself and to serve, and am called to do so selflessly and without expectations. I'm not always good at that last part. May Jesus continue to teach me more of His own humility, and may I be overjoyed at spending every drop of energy, and spending it well.
Today was a tough one. But it was primarily tough just in the sense of being exhausting and physically challenging. I don't mind those days all that much. Better than days where I mess up, or days where I deal with attitude problems with staff, or days where I think someone is being treated unfairly, or days where we're being monitored by someone from state who is making sure we do everything beyond perfection....etc.
So today was the best kind of tough day I guess. We were short two staff, and the people we got in their place to stay in ratio were not people whom I could ask too much of, for a variety of reasons. So that left my other regular staff pulling some extra weight, and me pulling loads of extra weight. I feel like what I did today was take people to the bathroom. 17 people, 3 times each. I didn't- I did have some help - but that's what it felt like. Aside from one office task I had to try to squeeze into the morning hours, it was kind of like bathroom-bathroom-bathroom-phone-call-bathroom-bathroom-bathroom-instruct-staff-bathroom-bathroom-bathroom-lunch-bathroom-bathroom-bathroom-bathroom-instruct-staff-bathroom-bathroom-bathroom-my lunch-bathroom-bathroom-bathroom-check-on-staff-bathroom-do-everything-replacement-staff-had-left-undone-bathroom-bathroom-bathroom-do-all-my-usual-daily-tasks-crammed-into-30-minutes-finally-go-to-the-bathroom-myself. Objectives were run with the clients, but not well. Conversations were had, but they were rushed. But at the end of the day, everyone was clean and fed and their little take-home sheets were filled out and we'd avoided any disaster. And so I think the day was a success. Not every day is filled with sweet, rewarding, bloggable moments. And yet some days I think it is good to just pour myself out and get little in return. It's good to remember that I am called to humble myself and to serve, and am called to do so selflessly and without expectations. I'm not always good at that last part. May Jesus continue to teach me more of His own humility, and may I be overjoyed at spending every drop of energy, and spending it well.
Sunday, October 14, 2012
31 for 21: Truths Together
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
What I really feel inspired to blog about today is about the Lord and His truth and my sweet local church. Thankfully, I also realized a sweet connection to tie all of that back to my emphasis on persons with disabilities. So while this entry may end up being long, hopefully it will also be cohesive. :-)
One thing I'm thankful for in the Lord's design is that He did not just see fit to save individual persons from their sin; He saw fit to save them into a body, the body of Christ, the Church, a community of believing persons. I thank Him for this often, particularly as I glean benefit from that on pretty much every day of my earthly existence.
Today at church, as we were singing, it was one of those sweet times when worshiping God through song really did take me from point A - a distracted, tired, muddled mind - to point B - true and focused worship. And as I sang, I was reminded of the people around me, often. Not in a way that detracted from worship but in a way that enhanced it:
One song we sang was one that was sung at a good friend's grandfather's funeral. I recalled the sweetness of that, how she was certain of his better life beyond the grave and how it brought her joy. Another song mentioned looking ahead to the day we die and how we will continue to praise God. I thought of a member of our congregation who has basically a terminal illness, and how still even she has tremendous hope. I thought about her dear friend who is my dear friend and the fervent prayers that have been poured out over her life. Another lyric mentioned how our Lord is slow to anger, and I recalled a conversation with another friend about how that characteristic of Him was so refreshing to her heart, and so it caused ME to think more intentionally about that quality as well.
Isn't God wise? Isn't He good? When believers live lives alongside one another, and do it vulnerably and honestly and biblically, we should only help each other to worship God more sincerely and more wholly. And I'm so thankful that I am part of a church that strives to do that well.
So how to tie that back to my work life? Easy. I have a client who also reminds me of characteristics of the Lord, and it is so sweet. This man definitely claims to love the Lord, and he loves to read the Bible, and he knows many truths about God. We do little reading lessons from his Children's Bible, we sing hymns, and I love to hear Him pray before lunch time. One day he asked me to explain "Why hell?" and I got to lay out the gospel for him - how our sin deserves punishment and only Jesus can save from hell. This man has chronic neck pain and headaches, and he has talked often about how only the Lord can take away his pain. I affirmed this truth and reminded him that the Lord is good, whether He takes away his pain or not. His response was "Yup, He's good. Always was, always will be." And this statement has sort of become our mantra. Always was, always will be. I love this about the Lord- that He doesn't change - but it isn't a quality of His that I often pondered before. Now I have a built-in reminder. When my cousin was killed by a hit-and-run driver and the police didn't have a suspect yet, this client reminded me then that God was the one who saw it, and that He was always good and always will be!
God has seen fit to insert even into my work life an external "reminder" (as in, a person who reminds), so that I have help throughout the day in remembering what is true. What a good God!
What I really feel inspired to blog about today is about the Lord and His truth and my sweet local church. Thankfully, I also realized a sweet connection to tie all of that back to my emphasis on persons with disabilities. So while this entry may end up being long, hopefully it will also be cohesive. :-)
One thing I'm thankful for in the Lord's design is that He did not just see fit to save individual persons from their sin; He saw fit to save them into a body, the body of Christ, the Church, a community of believing persons. I thank Him for this often, particularly as I glean benefit from that on pretty much every day of my earthly existence.
Today at church, as we were singing, it was one of those sweet times when worshiping God through song really did take me from point A - a distracted, tired, muddled mind - to point B - true and focused worship. And as I sang, I was reminded of the people around me, often. Not in a way that detracted from worship but in a way that enhanced it:
One song we sang was one that was sung at a good friend's grandfather's funeral. I recalled the sweetness of that, how she was certain of his better life beyond the grave and how it brought her joy. Another song mentioned looking ahead to the day we die and how we will continue to praise God. I thought of a member of our congregation who has basically a terminal illness, and how still even she has tremendous hope. I thought about her dear friend who is my dear friend and the fervent prayers that have been poured out over her life. Another lyric mentioned how our Lord is slow to anger, and I recalled a conversation with another friend about how that characteristic of Him was so refreshing to her heart, and so it caused ME to think more intentionally about that quality as well.
Isn't God wise? Isn't He good? When believers live lives alongside one another, and do it vulnerably and honestly and biblically, we should only help each other to worship God more sincerely and more wholly. And I'm so thankful that I am part of a church that strives to do that well.
So how to tie that back to my work life? Easy. I have a client who also reminds me of characteristics of the Lord, and it is so sweet. This man definitely claims to love the Lord, and he loves to read the Bible, and he knows many truths about God. We do little reading lessons from his Children's Bible, we sing hymns, and I love to hear Him pray before lunch time. One day he asked me to explain "Why hell?" and I got to lay out the gospel for him - how our sin deserves punishment and only Jesus can save from hell. This man has chronic neck pain and headaches, and he has talked often about how only the Lord can take away his pain. I affirmed this truth and reminded him that the Lord is good, whether He takes away his pain or not. His response was "Yup, He's good. Always was, always will be." And this statement has sort of become our mantra. Always was, always will be. I love this about the Lord- that He doesn't change - but it isn't a quality of His that I often pondered before. Now I have a built-in reminder. When my cousin was killed by a hit-and-run driver and the police didn't have a suspect yet, this client reminded me then that God was the one who saw it, and that He was always good and always will be!
God has seen fit to insert even into my work life an external "reminder" (as in, a person who reminds), so that I have help throughout the day in remembering what is true. What a good God!
Saturday, October 13, 2012
31 for 21: Love Chromosome
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
I've decided to officially make Saturday "video day" on the blog this month, to mix things up and to give me a true Saturday as I don't even have to BLOG about work. :-)
I was browsing through a blog I love (http://theworksofgod.com) and found on it this sweet video:
I've decided to officially make Saturday "video day" on the blog this month, to mix things up and to give me a true Saturday as I don't even have to BLOG about work. :-)
I was browsing through a blog I love (http://theworksofgod.com) and found on it this sweet video:
Of course, I don't think people with Down syndrome are inherently BETTER than people without an extra chromosome, just as I don't think they are worse. We are all sinners, and only the love of Christ is a perfect love. But I still love the sentiment, and I think this girl's pretty awesome.
And at the risk of sounding political, I will take this moment to also mention the sad truth: that something like 90% of babies with Down syndrome are aborted. That statistic is simply sickening and heart-wrenchingly sad. Those babies are not even given a chance to love their lives, and some may call the decision to destroy that chance simply a "woman's right to choose." I know that many (most, I hope) do not make that decision flippantly, but I still think a baby's right to live supersedes a woman's right to choose. And I hope that as awareness of Down snydrome increases, parents faced with a Down syndrome diagnosis in pregnancy will see the many blessings that a person with Down syndrome can bring, and we will see changes in that apalling statistic. Until then, I am thankful for the many people with DS in my own life. I am thankful that they have a chance to love their lives and that I have a chance to know them.
Friday, October 12, 2012
31 for 21: Best of Both Worlds
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Exhausted tonight so we'll see how this blogging thing goes...I'm getting in just under the wire on day 12.
For any readers who don't know, I have two jobs: a full-time one as a day program supervisor for adults with disabilities, and a part-time one as a music therapist for kids with disabilities. In job #1, I supervise a room of 16 clients and 6 staff. In job #2, I do 1:1 sessions with 7 different "kids" (ages 8-20) with disabilities.
I love both jobs:
In job #1: It's nearly always extremely busy and a little bit chaotic. There are nearly always several people at a time requesting or demanding my attention. And while this gets exhausting, in a lot of ways I love it. I love that it is impossible to get bored. I love that there is always something different, that no day is the same. I love the idea of working together with my staff members to achieve good for our clients. I love watching my clients interact with each other. I love how much I laugh.
In job #2: I get one person at a time. And it's awesome. It's especially startling when I go straight from one job to the other (which is typically 4 days per week). After 8 straight hours of chaos, I enter someone's quiet living room or bedroom or basement and sit with one person and sing a hello song. Don't get me wrong: things don't always stay quiet and simple. But I have this awesome freedom to devote 100% of my attention to that one person, to not feel a need to rush off in ten different directions.
In both jobs: I'm so thankful for the chance to spend real, substantial amounts of time with these individuals. I missed this desperately when my full-time job was group home supervision. Job #1 gives me 8 straight hours a day in a room with them. Job #2 gives me focused time with 1 at a time. And there is so much fruit from both of these scenarios. One of my little music therapy clients was 4 when I started with him...and he just turned ten this week! What fun to watch him become who he is.
It's hard having two jobs. It'd be nice to work fewer hours, to be less tired. But if there was some magic wand waved that made money grow on trees and two jobs not necessary, I'd be giving up something pretty amazing if I gave either of these jobs up.
Exhausted tonight so we'll see how this blogging thing goes...I'm getting in just under the wire on day 12.
For any readers who don't know, I have two jobs: a full-time one as a day program supervisor for adults with disabilities, and a part-time one as a music therapist for kids with disabilities. In job #1, I supervise a room of 16 clients and 6 staff. In job #2, I do 1:1 sessions with 7 different "kids" (ages 8-20) with disabilities.
I love both jobs:
In job #1: It's nearly always extremely busy and a little bit chaotic. There are nearly always several people at a time requesting or demanding my attention. And while this gets exhausting, in a lot of ways I love it. I love that it is impossible to get bored. I love that there is always something different, that no day is the same. I love the idea of working together with my staff members to achieve good for our clients. I love watching my clients interact with each other. I love how much I laugh.
In job #2: I get one person at a time. And it's awesome. It's especially startling when I go straight from one job to the other (which is typically 4 days per week). After 8 straight hours of chaos, I enter someone's quiet living room or bedroom or basement and sit with one person and sing a hello song. Don't get me wrong: things don't always stay quiet and simple. But I have this awesome freedom to devote 100% of my attention to that one person, to not feel a need to rush off in ten different directions.
In both jobs: I'm so thankful for the chance to spend real, substantial amounts of time with these individuals. I missed this desperately when my full-time job was group home supervision. Job #1 gives me 8 straight hours a day in a room with them. Job #2 gives me focused time with 1 at a time. And there is so much fruit from both of these scenarios. One of my little music therapy clients was 4 when I started with him...and he just turned ten this week! What fun to watch him become who he is.
It's hard having two jobs. It'd be nice to work fewer hours, to be less tired. But if there was some magic wand waved that made money grow on trees and two jobs not necessary, I'd be giving up something pretty amazing if I gave either of these jobs up.
Thursday, October 11, 2012
31 for 21: Victory Song
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Let me be careful how I say this: I don't know if I won a victory today for sure, but it felt like it. My meeting with my director (see prior post) included such statements from her as "You're absolutely right" and "I don't know why we didn't think of that," and it was a sweet gift from the Lord. I really can't go on and on with details and I apologize for my ambiguity. There are a lot of things up in the air, but my prayers regarding my voice being heard and my words being honoring to the Lord - those prayers were answered, and for that I am thankful.
But that's not what this post is about. My post is about what happened after. I walked back into the room. One of our clients had helped one of our staff make cake pops, and these were fresh out of the oven and looked amazing. The client was so proud of her work, all the clients were excited about this especially fancy little treat, and everyone was cheerful. I love when I come in to a room that is running smoothly and full of happy people. I had one objective left to run with one of my clients, one which requires her to be actively involved in some sort of musical interaction (yes, I'll admit, I wrote this objective...). This may involve having her play an instrument or singing along to a song. When it's me running the objective and I have time and my guitar, I like to do little mini sing-alongs in the room. Today I did NOT have time, really, but I had my guitar and I had this tremendous amount of joy in my heart. So naturally, I busted out said guitar and got to work. And several of the clients seemed to be hungering for my attention a little bit after I'd been out of the room in meetings all day. A little crowd gathered, and we sang. One of the favorites that many of them will sing (and this was NOT originally my doing) is Amazing Grace. So we sang! Oh man was it awesome. I was just overflowing with love for the Lord and his providence, and love for this amazing job He's provided, even when it's hard and frustrating and all that, and love for the amazing people that I get to sit around and sing with. I didn't care that I was behind on paperwork and other tasks, for that moment it really didn't matter. There had been a sweet little victory, and I got to celebrate with some people that are so very dear to me, people I'd fought for just moments before without them even knowing. What a sweet, sweet day.
Let me be careful how I say this: I don't know if I won a victory today for sure, but it felt like it. My meeting with my director (see prior post) included such statements from her as "You're absolutely right" and "I don't know why we didn't think of that," and it was a sweet gift from the Lord. I really can't go on and on with details and I apologize for my ambiguity. There are a lot of things up in the air, but my prayers regarding my voice being heard and my words being honoring to the Lord - those prayers were answered, and for that I am thankful.
But that's not what this post is about. My post is about what happened after. I walked back into the room. One of our clients had helped one of our staff make cake pops, and these were fresh out of the oven and looked amazing. The client was so proud of her work, all the clients were excited about this especially fancy little treat, and everyone was cheerful. I love when I come in to a room that is running smoothly and full of happy people. I had one objective left to run with one of my clients, one which requires her to be actively involved in some sort of musical interaction (yes, I'll admit, I wrote this objective...). This may involve having her play an instrument or singing along to a song. When it's me running the objective and I have time and my guitar, I like to do little mini sing-alongs in the room. Today I did NOT have time, really, but I had my guitar and I had this tremendous amount of joy in my heart. So naturally, I busted out said guitar and got to work. And several of the clients seemed to be hungering for my attention a little bit after I'd been out of the room in meetings all day. A little crowd gathered, and we sang. One of the favorites that many of them will sing (and this was NOT originally my doing) is Amazing Grace. So we sang! Oh man was it awesome. I was just overflowing with love for the Lord and his providence, and love for this amazing job He's provided, even when it's hard and frustrating and all that, and love for the amazing people that I get to sit around and sing with. I didn't care that I was behind on paperwork and other tasks, for that moment it really didn't matter. There had been a sweet little victory, and I got to celebrate with some people that are so very dear to me, people I'd fought for just moments before without them even knowing. What a sweet, sweet day.
Wednesday, October 10, 2012
31 for 21: Being an Advocate
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Advocacy is a huge theme where I work. We want to be advocates for our clients. We want our clients to be advocates for themselves. We want to seek out political leaders who can be advocates for our clients. We want to ensure that parents and guardians are equipped to be advocates for their loved ones. You get the picture...
Today, I learned of something - a decision made by the powers-that-be in my own workplace- that gives me the opportunity to be an advocate. Let's be real: it gives me the opportunity to gripe and groan, to get frustrated, etc...OR I can be an advocate.
Probably no coincidence that this morning before work I spent some time reading Proverbs 10. Proverbs 10 has much to say about many topics, but several of the verses mention our speech. One of my favorites, which often convicts me: "When words are many, transgression is not lacking, but whoever restrains his lips is prudent."
So today I had much opportunity to restrain my lips, to keep my words few. Tomorrow I get to try my hand at being an advocate in a way I rarely have as I meet w/the director of my department to discuss my concerns. And I'm excited! I'm thankful that the Lord restrained my mouth today. I'm thankful that I've been equipped to be an advocate. I'm excited to try to put into practice all sorts of Biblical principles about respecting persons in authority over me, and not complaining in any circumstance, and using words that give grace to those who hear. I DO respect my director, and I DO love my company, so the framework for respect has already been laid. I don't have high hopes that my words will have their desired effect, but I feel like they need to be said. And if I'm not heard, at least it won't be for lack of trying. And life will go on, and my clients will be ok. But if you are someone reading who loves the Lord, please do pray that my words would be heard. And most of all, that I maintain my integrity and honor the Lord as I speak them!
Advocacy is a huge theme where I work. We want to be advocates for our clients. We want our clients to be advocates for themselves. We want to seek out political leaders who can be advocates for our clients. We want to ensure that parents and guardians are equipped to be advocates for their loved ones. You get the picture...
Today, I learned of something - a decision made by the powers-that-be in my own workplace- that gives me the opportunity to be an advocate. Let's be real: it gives me the opportunity to gripe and groan, to get frustrated, etc...OR I can be an advocate.
Probably no coincidence that this morning before work I spent some time reading Proverbs 10. Proverbs 10 has much to say about many topics, but several of the verses mention our speech. One of my favorites, which often convicts me: "When words are many, transgression is not lacking, but whoever restrains his lips is prudent."
So today I had much opportunity to restrain my lips, to keep my words few. Tomorrow I get to try my hand at being an advocate in a way I rarely have as I meet w/the director of my department to discuss my concerns. And I'm excited! I'm thankful that the Lord restrained my mouth today. I'm thankful that I've been equipped to be an advocate. I'm excited to try to put into practice all sorts of Biblical principles about respecting persons in authority over me, and not complaining in any circumstance, and using words that give grace to those who hear. I DO respect my director, and I DO love my company, so the framework for respect has already been laid. I don't have high hopes that my words will have their desired effect, but I feel like they need to be said. And if I'm not heard, at least it won't be for lack of trying. And life will go on, and my clients will be ok. But if you are someone reading who loves the Lord, please do pray that my words would be heard. And most of all, that I maintain my integrity and honor the Lord as I speak them!
Tuesday, October 9, 2012
31 for 21: Sick
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today, I stayed home sick. I never do that. There are many days I SHOULD stay home sick but don't (you could say I follow in my mom's footsteps in that regard...) but today there was no way around it. Up all night with a stomachache, woke up nauseous, and thinking of the tasks I'd need to "stomach" at work was overwhelming. Plus the last thing I want to do is bring a stomach bug into my room, to my clients and staff.
Which leads me to my topic for the day. It's always strange for me when I'm sick, when I'm buying things at the drug store for myself. I spent a year and a half as a group home supervisor, and my life seemed often to revolve around the health of the residents. In this current job, too, but to a different degree. Being sick myself is so much easier! Here are a few reasons:
-I know how I am feeling. I don't have to guess. I don't have to try to read symptoms in clients unable to speak and draw conclusions as to what might be wrong, and what might help.
-I can go to the store and buy stuff for myself. No work credit card, no petty cash allowance, I can toss the receipt as I walk out the door.
-If I need to take medicine, I don't need to chart it. I've administered meds infinitely more times than I've consumed them, so it actually feels sort of weird to just pop a pill and not write it down. Family and friends will attest to the fact that my work habits definitely come out in the rare occasion that I take any medication myself. I set times to take my meds, read all the warnings first, etc. I have been tempted to make med logs even. A little bit silly.
Something I often think about is how hard it would be to NOT be able to communicate that you were feeling sick. Some of my clients have verbal skills but are often inaccurate in their reports, so we get skeptical if they claim illness. Some of them don't have any speech at all, and have no real formal way to tell us anything. We have to watch for sickness in their eyes, notice things they are doing differently that might indicate they aren't well. Much like parenting a small child, I imagine, except many of our clients won't even cry! They will just keep trying to do what we ask of them.
So today, I'm trying to be thankful. Thankful that I have the ability to "fix" things when I'm not feeling well (within reason, of course; only God will be able to make me well ultimately). Thankful that I don't have to try to get someone's attention and assistance in order to get better. Thankful that more than likely, this too will pass. Thankful that this can serve to give me some renewed compassion for my clients when I get back to them.
Today, I stayed home sick. I never do that. There are many days I SHOULD stay home sick but don't (you could say I follow in my mom's footsteps in that regard...) but today there was no way around it. Up all night with a stomachache, woke up nauseous, and thinking of the tasks I'd need to "stomach" at work was overwhelming. Plus the last thing I want to do is bring a stomach bug into my room, to my clients and staff.
Which leads me to my topic for the day. It's always strange for me when I'm sick, when I'm buying things at the drug store for myself. I spent a year and a half as a group home supervisor, and my life seemed often to revolve around the health of the residents. In this current job, too, but to a different degree. Being sick myself is so much easier! Here are a few reasons:
-I know how I am feeling. I don't have to guess. I don't have to try to read symptoms in clients unable to speak and draw conclusions as to what might be wrong, and what might help.
-I can go to the store and buy stuff for myself. No work credit card, no petty cash allowance, I can toss the receipt as I walk out the door.
-If I need to take medicine, I don't need to chart it. I've administered meds infinitely more times than I've consumed them, so it actually feels sort of weird to just pop a pill and not write it down. Family and friends will attest to the fact that my work habits definitely come out in the rare occasion that I take any medication myself. I set times to take my meds, read all the warnings first, etc. I have been tempted to make med logs even. A little bit silly.
Something I often think about is how hard it would be to NOT be able to communicate that you were feeling sick. Some of my clients have verbal skills but are often inaccurate in their reports, so we get skeptical if they claim illness. Some of them don't have any speech at all, and have no real formal way to tell us anything. We have to watch for sickness in their eyes, notice things they are doing differently that might indicate they aren't well. Much like parenting a small child, I imagine, except many of our clients won't even cry! They will just keep trying to do what we ask of them.
So today, I'm trying to be thankful. Thankful that I have the ability to "fix" things when I'm not feeling well (within reason, of course; only God will be able to make me well ultimately). Thankful that I don't have to try to get someone's attention and assistance in order to get better. Thankful that more than likely, this too will pass. Thankful that this can serve to give me some renewed compassion for my clients when I get back to them.
Monday, October 8, 2012
31 for 21: Giving Back
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today was a fun day in my room at work. One thing I love about my company is our strong commitment to be a part of our local community. We've been around since the 60s, maintain strong ties with lots of other community organizations and with local politicians, and are pretty well known and respected in our little corner of the world. This week, my room gets to be part of our company being the giver instead of the receiver - we are making dog toys to give to a local animal shelter. There are some ASU interns helping with various projects right now, and one of them spent several hours in our room today, helping my clients with this endeavor. I was looking forward to it but not sure how many of my people would like to participate, as they can get pretty stuck in their typical daily routines. I was so very pleasantly surprised! We had this whole crowd of people over at the activity table, and they were fast! They kept going and going, and they were so proud of their work. One guy just kept beaming and saying, "I've never made dog toys before!" Another lady, who'd been hard to convince that she would even make 1, kept it up til she had at least 5 in front of her. Typical routines were pushed to the side, and dog toys were the name of the game.
I love this! I am so thankful that we have a community who loves our clients, who loves to throw parties for them and make donations and come do make-overs at our group homes. But we are capable of so much! Our company slogan is, "empowering people with diabilities since 1967." And today, I am pretty positive my people felt empowered. Feeling loved and cared for is HUGE, and I'm forever grateful for the many people that have poured into our programs with much compassion. But there's something pretty incredible about watching my clients work so hard to give something back. I hope this is the beginning of a fantastic trend.
Today was a fun day in my room at work. One thing I love about my company is our strong commitment to be a part of our local community. We've been around since the 60s, maintain strong ties with lots of other community organizations and with local politicians, and are pretty well known and respected in our little corner of the world. This week, my room gets to be part of our company being the giver instead of the receiver - we are making dog toys to give to a local animal shelter. There are some ASU interns helping with various projects right now, and one of them spent several hours in our room today, helping my clients with this endeavor. I was looking forward to it but not sure how many of my people would like to participate, as they can get pretty stuck in their typical daily routines. I was so very pleasantly surprised! We had this whole crowd of people over at the activity table, and they were fast! They kept going and going, and they were so proud of their work. One guy just kept beaming and saying, "I've never made dog toys before!" Another lady, who'd been hard to convince that she would even make 1, kept it up til she had at least 5 in front of her. Typical routines were pushed to the side, and dog toys were the name of the game.
I love this! I am so thankful that we have a community who loves our clients, who loves to throw parties for them and make donations and come do make-overs at our group homes. But we are capable of so much! Our company slogan is, "empowering people with diabilities since 1967." And today, I am pretty positive my people felt empowered. Feeling loved and cared for is HUGE, and I'm forever grateful for the many people that have poured into our programs with much compassion. But there's something pretty incredible about watching my clients work so hard to give something back. I hope this is the beginning of a fantastic trend.
Sunday, October 7, 2012
31 for 21: Worth It
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
When I first started work in this field, just over 10 years ago, it was thrilling and exciting. It was my first summer out of high school, and while most of my friends found work in retail or restaurants, I had found a job doing what turned out to be my absolute passion. I loved going to work every day, loved working extra hours, loved even the hard days, loved the stories I came home with. I made these remarkable connections with a bunch of kids with disabilities, and it was amazing. People always said I must have a lot of patience, and I got to respond with all honesty saying I loved it. I did!
That summer job became my college job, became a side job while working on a related degree. Then my internship in NY with the same type of population, then a career in music therapy began. Then that music therapy career became the side job and I became a manager of two group homes and then of a day program room.
In recent years, my love for this population has not decreased, but the naivete has. Life as a care provider (direct support provider, music therapist, group home supervisor, day program supervisor) for people with disabilities has not stopped being incredibly rewarding. I still can't think of any other field of work (aside from maybe full-time missionary or full-time mom) that would appeal more. But this life is also grueling. It is exhausting. It demands all of me and more. It DOES take patience, but not just the type of patience that means not losing your temper when someone does something challenging. It takes a deep and abiding patience while you work day in and day out and don't always see change. It takes patience when the overall pace of your day must be slow and fast at the same time, all day long.
This line of work is not glamorous. There are days where I get excited about going to work and there are days like today where thoughts of going back the next day bring anxiety and weariness. But in the long run, I think that makes it better. I'm glad my work isn't easy - work isn't supposed to be. and the fact that I have to do hard things and push harder when I want to rest, means that the many triumphs and joys of the job, when they come, are that much sweeter. I have 16 clients to see tomorrow, and God has placed them in my life and me in theirs for a reason. For many reasons, probably. And tomorrow will hold challenges and maybe some defeats. But it's worth it.
When I first started work in this field, just over 10 years ago, it was thrilling and exciting. It was my first summer out of high school, and while most of my friends found work in retail or restaurants, I had found a job doing what turned out to be my absolute passion. I loved going to work every day, loved working extra hours, loved even the hard days, loved the stories I came home with. I made these remarkable connections with a bunch of kids with disabilities, and it was amazing. People always said I must have a lot of patience, and I got to respond with all honesty saying I loved it. I did!
That summer job became my college job, became a side job while working on a related degree. Then my internship in NY with the same type of population, then a career in music therapy began. Then that music therapy career became the side job and I became a manager of two group homes and then of a day program room.
In recent years, my love for this population has not decreased, but the naivete has. Life as a care provider (direct support provider, music therapist, group home supervisor, day program supervisor) for people with disabilities has not stopped being incredibly rewarding. I still can't think of any other field of work (aside from maybe full-time missionary or full-time mom) that would appeal more. But this life is also grueling. It is exhausting. It demands all of me and more. It DOES take patience, but not just the type of patience that means not losing your temper when someone does something challenging. It takes a deep and abiding patience while you work day in and day out and don't always see change. It takes patience when the overall pace of your day must be slow and fast at the same time, all day long.
This line of work is not glamorous. There are days where I get excited about going to work and there are days like today where thoughts of going back the next day bring anxiety and weariness. But in the long run, I think that makes it better. I'm glad my work isn't easy - work isn't supposed to be. and the fact that I have to do hard things and push harder when I want to rest, means that the many triumphs and joys of the job, when they come, are that much sweeter. I have 16 clients to see tomorrow, and God has placed them in my life and me in theirs for a reason. For many reasons, probably. And tomorrow will hold challenges and maybe some defeats. But it's worth it.
Saturday, October 6, 2012
31 for 21: End the R-Word
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today I'm cheating a little bit. Since I didn't actually interact with anyone with a disability today, I have no personal story to share. So instead I'm sharing a video. I browsed through many on this topic, this one is short and to the point and I like it.
And to it I'll add my own personal plea: Please stop using the words "retard" and "retarded." Please discourage the use of these words by the people around you. Please don't call me "politically correct" because I care about this issue. I understand that MOST people using these words do not do so with cruel intentions. Usually it is just a word that slips out of your mouth and is directed toward or about people who do not have intellectual disabilities. You might even say it about yourself.
Just know this: the word has a history, and it is a hurtful one. And many of the people harmed by this word, past or present, can't speak up to tell you that it hurts, even when it isn't aimed at them. Many of them CAN speak up and HAVE spoken to this effect. If you are interested, check out this webpage, http://r-word.org , where you can hear from many individuals and their friends and relatives and can also take the pledge to stop the use of this language in your own life.
Friday, October 5, 2012
31 for 21: Blessings in a Hard Afternoon
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today started out brilliantly. I'd spent some sweet time reading God's Word before work at a coffee shop, came in caffeined-up and encouraged and ready to go. I brought my crock pot in and got three of the guys to help me with a project right off the bat - making cider in a crock pot! Who'd have thought! Two of the guys LOVED it and were so proud to have been involved. I teased the one guy after spilling cloves all over his arm that it was a new cologne, and I called another "Mr Blue Hands" for the gloves he got to wear as he poured ingredients into the pot. It was lovely - one of those glorious endeavors that makes me love my job.
As the day went on, things got harder and harder. We were short one staff member so I was bearing some extra burdens and asking my staff to do the same. My coffee wore off and things got hectic around lunch time so I ate much later than I'd intended to. i was cranky and hungry and extremely low on energy. I eventually ate and sat briefly, but was still worn out and ready to be home. The cider finished "brewing" at 2:00, and I ladled it into several clients' cups. I placed a cup in front of one client and told him to not have any just yet because it was still hot. I turned around to keep serving and heard a scream. He hadn't heeded my warning, had jolted the hot drink, and hot cider had spilled on his stomach and upper arm. The very drink that had started my day off with a beautiful bang suddenly made the end of my day pretty awful. The client was yelling, I was scared and upset, the whole room got tense. We got his shirt off and cooled him down as quickly as we could, but he still had a couple burns, though not bad ones, thankfully. Once he stopped being so startled, he started apologizing profusely for having spilled, and I told him it was ME that needed to apologize. He got some first aid applied, a clean, dry shirt, and he wanted his cider back immediately (which didn't happen til I'd let it sit in the fridge forever AND added ice) and he was really pretty much over the whole thing. I, however, wasn't over it. I made all the necessary phone calls, to his group home manager, her boss, our nurse, his sister, and a fax to the state to report the incident. I was struggling to delegate out the rest of my day's tasks to get that reporting done, had a staff talk back to me which is RARE in this position and brought back horrific group home management memories, and I was flustered and upset.
BUT...
At the end of the day, I went to touch base with the guy who'd been burnt. I asked if we were "ok." He said yes, took my hand, and kissed it. I asked if I was forgiven for not keeping the hot drink away from him, and he said yes. I told him I was glad we were still friends, and he said "We always have been good friends" and sort of hugged my hand to his face again. I wanted to cry he was so sweet.
As I walked another client out to her van at the end of the day, I rested my hand on her shoulder while I waited by her wheelchair for her turn on the lift. She, too, took my hand and kissed it.
Two of my often-dissatisfied ladies told me they'd had wonderful days today - and I could tell they meant it.
I had a music therapy session today right after all this, and this guy was not too thrilled to start his "fall break" with therapy. He was almost as defiant as he gets...but his version of defiance consisted mostly of ignoring instructions to play or sing and instead patting me on the head or pretending to sleep on my shoulder. Hey, I'll take it.
I needed a whole lot of love to sort of soothe me through what had become a remarkably rough afternoon. And the Lord provided in abundance - sweet, affectionate gestures from each of these people meant that I COULD and WOULD make it til 5:15 when my weekend would finally begin.
Today started out brilliantly. I'd spent some sweet time reading God's Word before work at a coffee shop, came in caffeined-up and encouraged and ready to go. I brought my crock pot in and got three of the guys to help me with a project right off the bat - making cider in a crock pot! Who'd have thought! Two of the guys LOVED it and were so proud to have been involved. I teased the one guy after spilling cloves all over his arm that it was a new cologne, and I called another "Mr Blue Hands" for the gloves he got to wear as he poured ingredients into the pot. It was lovely - one of those glorious endeavors that makes me love my job.
As the day went on, things got harder and harder. We were short one staff member so I was bearing some extra burdens and asking my staff to do the same. My coffee wore off and things got hectic around lunch time so I ate much later than I'd intended to. i was cranky and hungry and extremely low on energy. I eventually ate and sat briefly, but was still worn out and ready to be home. The cider finished "brewing" at 2:00, and I ladled it into several clients' cups. I placed a cup in front of one client and told him to not have any just yet because it was still hot. I turned around to keep serving and heard a scream. He hadn't heeded my warning, had jolted the hot drink, and hot cider had spilled on his stomach and upper arm. The very drink that had started my day off with a beautiful bang suddenly made the end of my day pretty awful. The client was yelling, I was scared and upset, the whole room got tense. We got his shirt off and cooled him down as quickly as we could, but he still had a couple burns, though not bad ones, thankfully. Once he stopped being so startled, he started apologizing profusely for having spilled, and I told him it was ME that needed to apologize. He got some first aid applied, a clean, dry shirt, and he wanted his cider back immediately (which didn't happen til I'd let it sit in the fridge forever AND added ice) and he was really pretty much over the whole thing. I, however, wasn't over it. I made all the necessary phone calls, to his group home manager, her boss, our nurse, his sister, and a fax to the state to report the incident. I was struggling to delegate out the rest of my day's tasks to get that reporting done, had a staff talk back to me which is RARE in this position and brought back horrific group home management memories, and I was flustered and upset.
BUT...
At the end of the day, I went to touch base with the guy who'd been burnt. I asked if we were "ok." He said yes, took my hand, and kissed it. I asked if I was forgiven for not keeping the hot drink away from him, and he said yes. I told him I was glad we were still friends, and he said "We always have been good friends" and sort of hugged my hand to his face again. I wanted to cry he was so sweet.
As I walked another client out to her van at the end of the day, I rested my hand on her shoulder while I waited by her wheelchair for her turn on the lift. She, too, took my hand and kissed it.
Two of my often-dissatisfied ladies told me they'd had wonderful days today - and I could tell they meant it.
I had a music therapy session today right after all this, and this guy was not too thrilled to start his "fall break" with therapy. He was almost as defiant as he gets...but his version of defiance consisted mostly of ignoring instructions to play or sing and instead patting me on the head or pretending to sleep on my shoulder. Hey, I'll take it.
I needed a whole lot of love to sort of soothe me through what had become a remarkably rough afternoon. And the Lord provided in abundance - sweet, affectionate gestures from each of these people meant that I COULD and WOULD make it til 5:15 when my weekend would finally begin.
Thursday, October 4, 2012
31 for 21: In Brief
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Babysitting late tonight, so writing the body of my blog from my phone, hence the brevity :)
A funny story from today, and a brief comment about tomorrow, will be all this blog holds.
Staff and myself sitting around a table at work with a couple clients, discussing our outing calendar for the month, who should go where and when. The client sitting next to me suddenly said, in reference to another client we'd just mentioned, "She's a baller." Sure we'd heard her wrong, we asked her to repeat herself. She said the same thing then mentioned another client too, saying "He's a baller too.". We laughed about how this lady had picked up on slang that seemed so very unfitting to her...until her commentary continued: "Yep, he's a baller, knocks all the pins down...". Ah, a BOWLER!
Tomorrow our self-advocacy committee has a meeting. Once a month or so, 3-4 of my clients and 1 staff member attend these meetings. They discuss how to tell their story, how to get more active in their community, how to be in touch with legislators, etc. I'm glad they do it, I'm glad our company promotes it, I'm thankful for the people who put it together and I love the smiles it puts on my clients' faces. That is all :)
Babysitting late tonight, so writing the body of my blog from my phone, hence the brevity :)
A funny story from today, and a brief comment about tomorrow, will be all this blog holds.
Staff and myself sitting around a table at work with a couple clients, discussing our outing calendar for the month, who should go where and when. The client sitting next to me suddenly said, in reference to another client we'd just mentioned, "She's a baller." Sure we'd heard her wrong, we asked her to repeat herself. She said the same thing then mentioned another client too, saying "He's a baller too.". We laughed about how this lady had picked up on slang that seemed so very unfitting to her...until her commentary continued: "Yep, he's a baller, knocks all the pins down...". Ah, a BOWLER!
Tomorrow our self-advocacy committee has a meeting. Once a month or so, 3-4 of my clients and 1 staff member attend these meetings. They discuss how to tell their story, how to get more active in their community, how to be in touch with legislators, etc. I'm glad they do it, I'm glad our company promotes it, I'm thankful for the people who put it together and I love the smiles it puts on my clients' faces. That is all :)
Wednesday, October 3, 2012
31 for 21: Necessary Overkill
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today, I sat through a very long, very tedious meeting known as an ISP. We have these meetings periodically to touch base with some of the key players in an individual's life and discuss the "road map" for their future. I'm glad these meetings exist, but man are they tedious. Particularly when the individual in question lives in a state-run group home. Holy cow. 4 of the clients in my room live in this type of setting, and here are some of the many things we've had to discuss over the course of my 8 months there so far:
-this person's wheelchair must be at a 45 degree angle during mealtime
-this person's placemat must be dark-colored so as to contrast with his plate and help him to see it
-this person needs to be unbuckled in his wheelchair while in our room
-we must never use one piece of cloth as both a protector of clothing and a placemat. Two separate pieces of fabric must be used, and the one on the clothes must not be called a bib or look like a placemat. we must have in writing that this piece of fabric is helpful.
And oh, there are so many more. And it's not just the day program. When I was a group home supervisor, I was flabbergasted by the nitpicky details that we got nailed on by state monitors.
-a medication that was to be stored at a certain temperature came 1 degree short of that temperature when the temperature was taken in the middle of a dance therapy session.
-another medication said in very tiny letters to be stored upright (I'm fairly sure just to avoid spillage). We had to create a little cardboard brace for it to ensure that it didn't fall over in the medication bin
-at other group homes, a ridiculous amount of attention was given to pool gates, to having to-the-inch measurements be absolutely perfectly specific between bars, etc.
And again, so many more. And I hate when we get nitpicky, and it's frustrating when you know that no matter how hard you try there will ALWAYS be something you're doing wrong. But there's something that I always reminded myself of when group home monitors were doing their rounds, and that's helpful for me to remember now:
This is not how our government always acted toward persons with disabilities. And this is not how governments around the world act toward them. No, in fact, our government used to place everyone into huge institutions, where inhumane conditions often abounded. In an institution in New York called Willowbrook, it was discovered that masses of humanity were kept in the dark, usually naked. They were fed in sort of assembly line style, diseases abounded, family members were encouraged to stay away. In Romania, just a few years ago, I met a 10-year-old who lived in a crib and rarely if ever left her room in the orphanage. She had had physical disabilities at birth, which were now a million times worse as her body had sort of just grown into the crib.
And so, when it comes down to it, I'm glad our government has a million tedious rules in place to ensure that we don't revert to our past. I'm glad we have to prove every five minutes that we are treating these people as humans, because the other extreme is terribly disturbing. I'm glad that a team of 8 of us spend 2 hours in a crowded room to ensure that we are doing everything "right." It's hard, it's tedious, but I'm glad.
Today, I sat through a very long, very tedious meeting known as an ISP. We have these meetings periodically to touch base with some of the key players in an individual's life and discuss the "road map" for their future. I'm glad these meetings exist, but man are they tedious. Particularly when the individual in question lives in a state-run group home. Holy cow. 4 of the clients in my room live in this type of setting, and here are some of the many things we've had to discuss over the course of my 8 months there so far:
-this person's wheelchair must be at a 45 degree angle during mealtime
-this person's placemat must be dark-colored so as to contrast with his plate and help him to see it
-this person needs to be unbuckled in his wheelchair while in our room
-we must never use one piece of cloth as both a protector of clothing and a placemat. Two separate pieces of fabric must be used, and the one on the clothes must not be called a bib or look like a placemat. we must have in writing that this piece of fabric is helpful.
And oh, there are so many more. And it's not just the day program. When I was a group home supervisor, I was flabbergasted by the nitpicky details that we got nailed on by state monitors.
-a medication that was to be stored at a certain temperature came 1 degree short of that temperature when the temperature was taken in the middle of a dance therapy session.
-another medication said in very tiny letters to be stored upright (I'm fairly sure just to avoid spillage). We had to create a little cardboard brace for it to ensure that it didn't fall over in the medication bin
-at other group homes, a ridiculous amount of attention was given to pool gates, to having to-the-inch measurements be absolutely perfectly specific between bars, etc.
And again, so many more. And I hate when we get nitpicky, and it's frustrating when you know that no matter how hard you try there will ALWAYS be something you're doing wrong. But there's something that I always reminded myself of when group home monitors were doing their rounds, and that's helpful for me to remember now:
This is not how our government always acted toward persons with disabilities. And this is not how governments around the world act toward them. No, in fact, our government used to place everyone into huge institutions, where inhumane conditions often abounded. In an institution in New York called Willowbrook, it was discovered that masses of humanity were kept in the dark, usually naked. They were fed in sort of assembly line style, diseases abounded, family members were encouraged to stay away. In Romania, just a few years ago, I met a 10-year-old who lived in a crib and rarely if ever left her room in the orphanage. She had had physical disabilities at birth, which were now a million times worse as her body had sort of just grown into the crib.
And so, when it comes down to it, I'm glad our government has a million tedious rules in place to ensure that we don't revert to our past. I'm glad we have to prove every five minutes that we are treating these people as humans, because the other extreme is terribly disturbing. I'm glad that a team of 8 of us spend 2 hours in a crowded room to ensure that we are doing everything "right." It's hard, it's tedious, but I'm glad.
Tuesday, October 2, 2012
31 for 21: Laughter
*I've joined a blogging challenge for the month of October: Blog every day in October in honor of National Down Syndrome Awareness Month (Down syndrome is medically defined as Trisomy 21, and there are 31 days in October, hence the name 31 for 21). My posts will not necessarily be about Down syndrome, but I am writing as a person who 1) loves many people w/Down syndrome and other disabilities and 2) desires for others to be able to see what I see: remarkably unique people with much to offer to the world*
Today I want to share a few unconnected instances of pure joy and lightheartedness. I love when these happen at work, because for a few moments, I am practically forced to leave my responsibilities and time constraints behind for just a few moments and join in the joyful abandon of the person in my care. Today's such instances:
1) One of my clients at work thinks that sneezes are hilarious. Always. We might think this individual is asleep or not paying attention, but if anyone in the room sneezes, there is a loud, guttural laugh from her table. The louder the sneeze, the louder the laugh. She reacts similarly to someone dropping something. She happens to be blind, so I'm sure she'd laugh a lot more if all of things we dropped made loud noises. But it's so fun because these laughs happen sporadically throughout the day, and never fail to make me smile.
2) When I was getting settled in the room this morning, I approached one of my clients. She has cerebral palsy and is difficult to understand; she is also hearing-impaired, so our conversations are always a bit labored. Our conversations also happen to frequently consist of her bringing complaints or problems my way and hoping that I can wave a magic wand to instantly solve them. Today, I came up to her to explain that she would have a doctor appt around lunchtime and needed to consider eating a snack before she left since her lunch would be late. She ignored what I said and told me instead that her glasses were too loose and needed tightening. I reminded her that we'd asked her to ask her group home staff to help her because we don't have a toolkit in the room. I then suggested that she ask the woman taking her to the appointment and said that the "MACS" (our medical appt coordinators) usually are pretty handy and might have a tool to help her. I have no idea why, but she absolutely fell apart in laughter at this comment. What had started out as a tedious conversation about an already-over-discussed-issue became the two of us laughing and laughing and laughing. Her laugh is addictive and contagious. Both the lunch issue and the glasses issue were dropped, and we just laughed. I still have no idea what the joke was...
3) I was giving an afternoon snack to another woman this afternoon. This lady has many physical challenges that make "easy" tasks quite difficult. She eats only pureed foods and had some applesauce for snack. She eats with a very small spoon and has a very tight mouth, and I 've joked with her that waiting for her mouth to open is like waiting for a mini-golf door to open up - you have to take your shot at just the right time and hope the ball gets in before the door shuts. Today...I missed my shot. And somehow the angle of the spoon coming towards her face and the timing with which she closed her mouth led to that spoon sort of bouncing back and flinging applesauce up and onto her forehead. I'm sure my own clumsiness was mostly to blame; the physics of it all just really don't make sense. But however it happened, it was awesome. There was a big glob of applesauce on her forehead and none in her mouth. She almost stopped breathing from laughing so hard (scary moment); and I finally had to try to convince her to stop thinking about it, as every bite I tried to feed her was met with this deep chuckle that I was sure would impede the actual eating of the applesauce.
4) In my music therapy session with a client this afternoon, I closed with a very brief improvisation on piano keyboard; we both played freely and I tried to follow her lead as she presented different rhythms and melodic turns. She presented with some interesting syncopation that she doesn't typically use, and when we finished, she said, "I bet you don't know what I was playing?!" I asked her to tell me and she said she was playing our goodbye song. Sure enough, she'd been playing an approximation of the rhythm of the song we always use at the end of our sessions. She was so proud she'd done it, even prouder that she'd stumped me, and she was simply glowing as we transitioned into our actual goodbye song. She fought back laughter through the whole song, sang with this gloriously-joyful-if-uncomfortably-strained voice, and made me SWEAR I wouldn't tell her mom what she'd pulled off.
They say laughter is the best medicine, that it has no foreign accent, and all sorts of other things about it. Today I benefited from the blissful freedom of it. No trouble understanding laughter, no real point to get across, just a carefree expression of joy, for reasons big and small.
Today I want to share a few unconnected instances of pure joy and lightheartedness. I love when these happen at work, because for a few moments, I am practically forced to leave my responsibilities and time constraints behind for just a few moments and join in the joyful abandon of the person in my care. Today's such instances:
1) One of my clients at work thinks that sneezes are hilarious. Always. We might think this individual is asleep or not paying attention, but if anyone in the room sneezes, there is a loud, guttural laugh from her table. The louder the sneeze, the louder the laugh. She reacts similarly to someone dropping something. She happens to be blind, so I'm sure she'd laugh a lot more if all of things we dropped made loud noises. But it's so fun because these laughs happen sporadically throughout the day, and never fail to make me smile.
2) When I was getting settled in the room this morning, I approached one of my clients. She has cerebral palsy and is difficult to understand; she is also hearing-impaired, so our conversations are always a bit labored. Our conversations also happen to frequently consist of her bringing complaints or problems my way and hoping that I can wave a magic wand to instantly solve them. Today, I came up to her to explain that she would have a doctor appt around lunchtime and needed to consider eating a snack before she left since her lunch would be late. She ignored what I said and told me instead that her glasses were too loose and needed tightening. I reminded her that we'd asked her to ask her group home staff to help her because we don't have a toolkit in the room. I then suggested that she ask the woman taking her to the appointment and said that the "MACS" (our medical appt coordinators) usually are pretty handy and might have a tool to help her. I have no idea why, but she absolutely fell apart in laughter at this comment. What had started out as a tedious conversation about an already-over-discussed-issue became the two of us laughing and laughing and laughing. Her laugh is addictive and contagious. Both the lunch issue and the glasses issue were dropped, and we just laughed. I still have no idea what the joke was...
3) I was giving an afternoon snack to another woman this afternoon. This lady has many physical challenges that make "easy" tasks quite difficult. She eats only pureed foods and had some applesauce for snack. She eats with a very small spoon and has a very tight mouth, and I 've joked with her that waiting for her mouth to open is like waiting for a mini-golf door to open up - you have to take your shot at just the right time and hope the ball gets in before the door shuts. Today...I missed my shot. And somehow the angle of the spoon coming towards her face and the timing with which she closed her mouth led to that spoon sort of bouncing back and flinging applesauce up and onto her forehead. I'm sure my own clumsiness was mostly to blame; the physics of it all just really don't make sense. But however it happened, it was awesome. There was a big glob of applesauce on her forehead and none in her mouth. She almost stopped breathing from laughing so hard (scary moment); and I finally had to try to convince her to stop thinking about it, as every bite I tried to feed her was met with this deep chuckle that I was sure would impede the actual eating of the applesauce.
4) In my music therapy session with a client this afternoon, I closed with a very brief improvisation on piano keyboard; we both played freely and I tried to follow her lead as she presented different rhythms and melodic turns. She presented with some interesting syncopation that she doesn't typically use, and when we finished, she said, "I bet you don't know what I was playing?!" I asked her to tell me and she said she was playing our goodbye song. Sure enough, she'd been playing an approximation of the rhythm of the song we always use at the end of our sessions. She was so proud she'd done it, even prouder that she'd stumped me, and she was simply glowing as we transitioned into our actual goodbye song. She fought back laughter through the whole song, sang with this gloriously-joyful-if-uncomfortably-strained voice, and made me SWEAR I wouldn't tell her mom what she'd pulled off.
They say laughter is the best medicine, that it has no foreign accent, and all sorts of other things about it. Today I benefited from the blissful freedom of it. No trouble understanding laughter, no real point to get across, just a carefree expression of joy, for reasons big and small.
Monday, October 1, 2012
31 for 21
I've been looking for an excuse to start blogging again, stumbled upon this, and am so excited:
"Down syndrome is medically known as Trisomy 21. Trisomy 21 is for the 3 copies of the 21st chromosome that individuals with Down syndrome have.
There are 31 days in the month of Oct.
The blog challenge is to blog for 31 days for (T)21. Blog every day in the month of Oct in honor of National Down Syndrome Awareness Month."
I looked on the original blogger's page to be sure it wasn't something meant only for parents of people with Down syndrome, and it isn't. Bloggers don't even have to write about Down syndrome each day; we are just encouraged to mention awareness on the site and to blog every day. I'll be blogging a variety of things, mostly about those "little victories" that happen at work. Most of the clients I work with do not have Down syndrome, but some of them do, and ALL of them have remarkably unique abilities and personalities. It's truly a blessing to be a part of their lives day in and day out, and something pretty cool happens every day. So without further ado...
Today at work, there was an ASU intern interviewing 3 of the clients in my room. These 3 clients are part of a "self-advocacy committee" that my company has put together, and they have a strong desire to share their story with people publicly. So this sweet lady came in to interview them, to help them put their words on paper, so that they'll have a formalized "story" that they are able to leave with people whom they meet.
My 3 each had their time to sit and be interviewed, 1 at a time. And even that was just so special. I felt sort of like a proud mom, introducing each of them, prepping them and the interviewer for things that might be challenging. When they'd finished, I got to go over what they'd said and check for accuracy. I teased one guy because I was SHOCKED he'd forgotten to mention his bowling skills. I laughed at the notes the interviewer had written on the ways my one lady's personality had shown through during the interview. And while it was the first of the month and I had TONS of paperwork that I "should" have been doing, I sort of reveled in this sweet process, in letting these individuals whom I love so dearly show off a little, show who they are and what they think to this stranger, and hopefully soon, to more and more people. They speak so frankly about their disabilities - this is simply LIFE for them, and they are not ashamed. I love seeing them discover their own voice and learn how to use it.
"Down syndrome is medically known as Trisomy 21. Trisomy 21 is for the 3 copies of the 21st chromosome that individuals with Down syndrome have.
There are 31 days in the month of Oct.
The blog challenge is to blog for 31 days for (T)21. Blog every day in the month of Oct in honor of National Down Syndrome Awareness Month."
I looked on the original blogger's page to be sure it wasn't something meant only for parents of people with Down syndrome, and it isn't. Bloggers don't even have to write about Down syndrome each day; we are just encouraged to mention awareness on the site and to blog every day. I'll be blogging a variety of things, mostly about those "little victories" that happen at work. Most of the clients I work with do not have Down syndrome, but some of them do, and ALL of them have remarkably unique abilities and personalities. It's truly a blessing to be a part of their lives day in and day out, and something pretty cool happens every day. So without further ado...
Today at work, there was an ASU intern interviewing 3 of the clients in my room. These 3 clients are part of a "self-advocacy committee" that my company has put together, and they have a strong desire to share their story with people publicly. So this sweet lady came in to interview them, to help them put their words on paper, so that they'll have a formalized "story" that they are able to leave with people whom they meet.
My 3 each had their time to sit and be interviewed, 1 at a time. And even that was just so special. I felt sort of like a proud mom, introducing each of them, prepping them and the interviewer for things that might be challenging. When they'd finished, I got to go over what they'd said and check for accuracy. I teased one guy because I was SHOCKED he'd forgotten to mention his bowling skills. I laughed at the notes the interviewer had written on the ways my one lady's personality had shown through during the interview. And while it was the first of the month and I had TONS of paperwork that I "should" have been doing, I sort of reveled in this sweet process, in letting these individuals whom I love so dearly show off a little, show who they are and what they think to this stranger, and hopefully soon, to more and more people. They speak so frankly about their disabilities - this is simply LIFE for them, and they are not ashamed. I love seeing them discover their own voice and learn how to use it.
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