...which I'm writing on Wednesday. Yeah...tough week. Actually I played a lot last weekend and I'm kind of paying for it now. Anyway - here are the coolest, most inspirational, most informative, most heart-tugging posts that I've found in my Internet roving over the last few weeks. Please enjoy and be sure to tell them you found them through The Simple Life.
1) This piece on waves from kidz pretty much sums up where I've been for the last four years or so. I'm learning to find treasures amid the surf.
2) As usual, Varda at Squashed Bologna nails it again with her piece about words. Varda is responding to the story about the father who planted a microphone on his son to find out what was happening to him during school. He discovered that his son's instructional staff were being verbally abusive to the children in his special needs classroom - children who often do not have the verbal abilities to tell their parents that something very wrong is happening. It's every special needs parent's worst nightmare. Yes, words are powerful.
3) I love reading Laura Shumaker's blog. Her book A Regular Guy was particularly meaningful to me because we live in the same area and I could relate to so much of her story from her son's early days. I also love reading about how Matthew is doing now as an adult with autism. On the one hand it's hard to hear that he is still struggling. On the other hand it's kind of encouraging to know that this is a long process and it's okay that we haven't figured everything out already.
4) Autism & Oughtisms post about words and rhetoric is also important, and kind of what I was trying to say here, but as usual said with more precision by A&O.
5) There have been a lot of mommy wars out there lately: tiger moms, working moms, stay at home moms, attachment parenting moms, blah blah blah. Katy at Bird on the Street says she is "Just a Mom" and that's plenty. I agree.
Showing posts with label cerebral palsy. Show all posts
Showing posts with label cerebral palsy. Show all posts
Sunday, May 13, 2012
Sunday, August 7, 2011
Sunday Digest 35
Just to let you all know, I've shifted to a new blog schedule...I've been finding it increasingly difficult to get two posts plus a post at 5 Minutes done each week. Part of this is because my usual writing time (nap time!) is starting to vanish, and part of this is because I'm trying to take a more active role in my husband's business. I am hoping to do one post each week here, and keep my posts at 5 Minutes flowing, too, plus any other guest posts that come my way. I may have a couple of guests pop up here, soon, too. We shall see. This may also free up some time to work on a couple of other projects, which, if they come about I will tell you about in due time.
To the business of the day...it is digest time! Here are some interesting links I've come across as I've roved the Internet lately:
1) These first two links I heard about via my fellow blogger, Autism and Oughtisms. She shared them on facebook. I am increasingly interested in learning about the brain, and what happens when it isn't working normatively. This article focuses on autism, perhaps explaining a piece of language confusion in autism where the affected individual reverses pronouns - calling themselves "you" and others "I." It seems these researchers have found that the white matter connections between two areas of the brain are faulty - picture a short circuit between the light switch and the bulb. I find this particularly fascinating as my mother-in-law apparently has similar white matter deterioration, but in different "circuits." Brains are miraculous!
2) This second link is more practical and discusses first responders' need to learn how to best help an individual with autism during an emergency. Emergency preparedness is a big topic these days, and one that requires special attention if you are a caregiver to an individual with special needs. Some local first responders have registries where you can notify them in advance if you think special equipment or specific information will help them give better aid to your loved one with special needs. Check it out and be prepared.
3) Another friend from down under SquiggleMum posted this "how to" on building an outdoor play kitchen with her kids. It is adorable, and NOT expensive, and I imagine they are having all sorts of fun, creative, imaginative, social play out there. What fun!
4) This touching piece by Tim Gort over at Hopeful Parents explores what happens when a man becomes a dad.
5) Last but not least, my fellow 5 Minutes contributor, Maggie, shared a success story for her twin boys. Thanks to the dedication of a lifeguard and some appropriate individualized instruction they are learning to swim! Can't beat that!
To the business of the day...it is digest time! Here are some interesting links I've come across as I've roved the Internet lately:
1) These first two links I heard about via my fellow blogger, Autism and Oughtisms. She shared them on facebook. I am increasingly interested in learning about the brain, and what happens when it isn't working normatively. This article focuses on autism, perhaps explaining a piece of language confusion in autism where the affected individual reverses pronouns - calling themselves "you" and others "I." It seems these researchers have found that the white matter connections between two areas of the brain are faulty - picture a short circuit between the light switch and the bulb. I find this particularly fascinating as my mother-in-law apparently has similar white matter deterioration, but in different "circuits." Brains are miraculous!
2) This second link is more practical and discusses first responders' need to learn how to best help an individual with autism during an emergency. Emergency preparedness is a big topic these days, and one that requires special attention if you are a caregiver to an individual with special needs. Some local first responders have registries where you can notify them in advance if you think special equipment or specific information will help them give better aid to your loved one with special needs. Check it out and be prepared.
3) Another friend from down under SquiggleMum posted this "how to" on building an outdoor play kitchen with her kids. It is adorable, and NOT expensive, and I imagine they are having all sorts of fun, creative, imaginative, social play out there. What fun!
4) This touching piece by Tim Gort over at Hopeful Parents explores what happens when a man becomes a dad.
5) Last but not least, my fellow 5 Minutes contributor, Maggie, shared a success story for her twin boys. Thanks to the dedication of a lifeguard and some appropriate individualized instruction they are learning to swim! Can't beat that!
Saturday, July 9, 2011
Phelan-McDermid Syndrome Primer
I first heard about Phelan-McDermid Syndrome (also called PMS, but not to be confused with the female monthly cycle issues) after reading this recent blog post on Autism Speaks. PMS is related to autism due to behavioral symptoms (poor eye contact, social anxiety, and perseverative actions) but some question whether the genetic deletion is a cause of autism or if it separates these individuals from other spectrum disorders. Because many of the symptoms overlap, children with PMS may be diagnosed with autism or ADHD or dystonic CP or some combination of these unless a specific genetic test is performed.
PMS is cause by the absence or loss of genes at the tip of Chromosome 22 (a 22q13 deletion). The loss of Shank3/ProSAP2 gene is suspected to be the primary cause of the symptoms associated with PMS. The Shank3 gene plays a role in the formation of the nervous system during fetal development. As in many spectrum disorders, invididuals with PMS may have mild or more severe challenges in several areas, including:
PMS and Fragile X Syndrome both present strong arguments for the benefits of genetic testing - basically to receive a more specific diagnosis that will allow more focused efforts in intervention, support, and treatment. Some of the comments from the autism speaks blog article seemed to imply that this level of specificity is not necessary if the child is "accepted" and supported in their education and development. What do you think about these issues? We have not pursued any genetic testing for our daughter (yet) mostly due to financial considerations and insurance concerns. Certian phrases in this article made me wonder if we should, though. For instance similar to the little girl highlighted by Autism Speaks, several people have noted that our daughter is "too social" to be autistic, though that is her official diagnosis. I maintain that though she enjoys being with people she does not understand social constructs...her desire to be with people is a great motivator for helping her learn some of the obvious rules of social behavior, but some of the more subtle interactions still seem to be beyond her reach. I am more curious than ever whether we should consider genetic testing and whether it would clear up some of the mysteries we continue to face, but given our excellent progress to date I wonder how much we would gain. I welcome your input...just click on comments below.
If you are interested in learning more about Pheland-McDermid Syndrome I suggest you begin here.
PMS is cause by the absence or loss of genes at the tip of Chromosome 22 (a 22q13 deletion). The loss of Shank3/ProSAP2 gene is suspected to be the primary cause of the symptoms associated with PMS. The Shank3 gene plays a role in the formation of the nervous system during fetal development. As in many spectrum disorders, invididuals with PMS may have mild or more severe challenges in several areas, including:
- delayed or absent speech and communication
- low muscle tone (hypotonia) - delayed sitting up, rolling over, crawling, walking
- challenges with eating (sometimes beginning with bottle/breast feeding as a newborn)
- sleep disturbances
- emotional instability
- may be tall for their age
- subtle facial features: long head shape, puffiness around the eyes, long eyelashes, droopy eyelids, puffy cheeks, large ears
- large fleshy hands, underdeveloped toenails, lack of perspiration - easily overheat.
PMS and Fragile X Syndrome both present strong arguments for the benefits of genetic testing - basically to receive a more specific diagnosis that will allow more focused efforts in intervention, support, and treatment. Some of the comments from the autism speaks blog article seemed to imply that this level of specificity is not necessary if the child is "accepted" and supported in their education and development. What do you think about these issues? We have not pursued any genetic testing for our daughter (yet) mostly due to financial considerations and insurance concerns. Certian phrases in this article made me wonder if we should, though. For instance similar to the little girl highlighted by Autism Speaks, several people have noted that our daughter is "too social" to be autistic, though that is her official diagnosis. I maintain that though she enjoys being with people she does not understand social constructs...her desire to be with people is a great motivator for helping her learn some of the obvious rules of social behavior, but some of the more subtle interactions still seem to be beyond her reach. I am more curious than ever whether we should consider genetic testing and whether it would clear up some of the mysteries we continue to face, but given our excellent progress to date I wonder how much we would gain. I welcome your input...just click on comments below.
If you are interested in learning more about Pheland-McDermid Syndrome I suggest you begin here.
Sunday, May 15, 2011
Sunday Digest 31
Here is the latest and greatest...the posts that I found particularly helpful, inspiring, moving, or funny in the last few weeks. Click on the links from my on-line friends and if you leave a comment make sure to tell them you found them via Simple Life. Thanks!
1) I loved this post by Autism & Oughtisms exploring speech development and how much more one can notice each stage when there are delays. Little things like learning to say "um" when you're having trouble thinking of the right words...I remember being so excited when my daughter learned to say yes when she meant yes. So important.
2) My fellow 5 Minutes for Special Needs contributor, Lee, shared about their annual "prom night" sponsored by a local high school for teens and adults with special needs. It sounds like a wonderful evening for everyone who is involved.
3) Bird on the Street hit a home run with this post about raising a special needs child. Yes, there are challenges but maybe not the challenges you would expect a parent to be bothered by.
4) Having a sibling with special needs can be...challenging. This brother seems to have it figured out. Thanks for sharing, Mary Hill at Hopeful Parents.
5) And this post, from Specialgathering is just plain funny.
1) I loved this post by Autism & Oughtisms exploring speech development and how much more one can notice each stage when there are delays. Little things like learning to say "um" when you're having trouble thinking of the right words...I remember being so excited when my daughter learned to say yes when she meant yes. So important.
2) My fellow 5 Minutes for Special Needs contributor, Lee, shared about their annual "prom night" sponsored by a local high school for teens and adults with special needs. It sounds like a wonderful evening for everyone who is involved.
3) Bird on the Street hit a home run with this post about raising a special needs child. Yes, there are challenges but maybe not the challenges you would expect a parent to be bothered by.
4) Having a sibling with special needs can be...challenging. This brother seems to have it figured out. Thanks for sharing, Mary Hill at Hopeful Parents.
5) And this post, from Specialgathering is just plain funny.
Saturday, March 5, 2011
Speech and Language Delays
Language delays are defined as any communication skill development that lags behind children of the same age by more than a year. This is the most common developmental disorder in children, affecting up to 10% of children. It is more common in boys than in girls.There are several possible underlying causes of language delays including:
Although there is wide variation in when children begin to communicate, the rate of language development, and the pattern of speech development, there are some key language development milestones to keep in mind. In my experience being aware of any delays or differences in your child's communication between the ages of 6 months-3 years is critical. At 3 years of age you can request a speech assessment through your local public school district and any issues can then be addressed with Early Intervention services. If there are significant challenges before age 3, you can ask your pediatrician for a referral to a developmental specialist. If your pediatrician assures you that children develop at different rates, but you are still concerned, you can continue to request a referral. Explain your concerns in more detail if necessary. Specific delays to be concerned about include: not babbling by 12 months, not understanding single commands at 1.5 years, not talking by 2 years, not using sentences by 3 years, not telling a story by 4-5 years. The challenges may also include an inability to follow directions, slow or garbled speech after age 3, difficulty putting words in the correct order (syntax), or problems with articulation (phonology).
One key issue to be aware of is the difference between receptive language and expressive language. Receptive language refers to a child's ability to understand and process the words spoken by people around them. Expressive language refers to a child's ability to initiate communication by requesting something or commenting on events around them. In normal development expressive language lags behind receptive language, thus your child should be able to understand and comply with simple one step commands (e.g. get your shoe) before they can vocalize a sentence of similar length (e.g. that's my shoe). If both domains are apparently delayed and if no hearing impairment is present a full developmental assessment should be requested.
About 60% of language delays resolve on their own. Early intervention can prevent related social, behavioral, and emotional issues. Left untreated language delays may lead to selective mutism, where social anxiety hinders a child's ability to talk with peers, large groups, and unfamiliar adults. There is no known way to prevent language delays.
After a language delay has been diagnosed there may be several professionals involved in various therapies to encourage language development. The team will certainly include a speech and language pathologist (SLP), and may also include an audiologist, a psychologist, an occupational therapist (OT), and/or a social worker. Parents can play a key role in encouraging language development in their child. In addition to initiating assessments and informing the team of professionals of your child's unique abilities, preferences, and challenges, you can help make your home a language rich environment. We were fortunate to learn about the Hanen Program fairly early in the process of understanding our daughter's delays. We attended a Hanen Workshop where we learned to modify our activities and our language to encourage richer language experiences for our daughter, before we even understood that her language delays were the result of an autism spectrum disorder. We also used their It Takes Two to Talk workbook to find games and stories that encouraged conversation.
To learn more about speech and language delays, you can get started here:
- hearing impairment
- dyslexia
- cognitive delays
- maturation delay
- cerebral palsy
- autism
- congenital blindness
- Klinefelter syndrome
- receptive aphasia
- expressive aphasia
- apraxia (loss of coordinated movement without motor or sensory impairment)
Although there is wide variation in when children begin to communicate, the rate of language development, and the pattern of speech development, there are some key language development milestones to keep in mind. In my experience being aware of any delays or differences in your child's communication between the ages of 6 months-3 years is critical. At 3 years of age you can request a speech assessment through your local public school district and any issues can then be addressed with Early Intervention services. If there are significant challenges before age 3, you can ask your pediatrician for a referral to a developmental specialist. If your pediatrician assures you that children develop at different rates, but you are still concerned, you can continue to request a referral. Explain your concerns in more detail if necessary. Specific delays to be concerned about include: not babbling by 12 months, not understanding single commands at 1.5 years, not talking by 2 years, not using sentences by 3 years, not telling a story by 4-5 years. The challenges may also include an inability to follow directions, slow or garbled speech after age 3, difficulty putting words in the correct order (syntax), or problems with articulation (phonology).
One key issue to be aware of is the difference between receptive language and expressive language. Receptive language refers to a child's ability to understand and process the words spoken by people around them. Expressive language refers to a child's ability to initiate communication by requesting something or commenting on events around them. In normal development expressive language lags behind receptive language, thus your child should be able to understand and comply with simple one step commands (e.g. get your shoe) before they can vocalize a sentence of similar length (e.g. that's my shoe). If both domains are apparently delayed and if no hearing impairment is present a full developmental assessment should be requested.
About 60% of language delays resolve on their own. Early intervention can prevent related social, behavioral, and emotional issues. Left untreated language delays may lead to selective mutism, where social anxiety hinders a child's ability to talk with peers, large groups, and unfamiliar adults. There is no known way to prevent language delays.
After a language delay has been diagnosed there may be several professionals involved in various therapies to encourage language development. The team will certainly include a speech and language pathologist (SLP), and may also include an audiologist, a psychologist, an occupational therapist (OT), and/or a social worker. Parents can play a key role in encouraging language development in their child. In addition to initiating assessments and informing the team of professionals of your child's unique abilities, preferences, and challenges, you can help make your home a language rich environment. We were fortunate to learn about the Hanen Program fairly early in the process of understanding our daughter's delays. We attended a Hanen Workshop where we learned to modify our activities and our language to encourage richer language experiences for our daughter, before we even understood that her language delays were the result of an autism spectrum disorder. We also used their It Takes Two to Talk workbook to find games and stories that encouraged conversation.To learn more about speech and language delays, you can get started here:
- Answers.com language delay - be aware this is written in a very clinical style which may be disturbing to some parents.
- American Academy of Pediatrics - I particularly like the way this page relates language delays to autism. Their list of "warning signs" of autism is more comprehensive than others I've seen, and the discussion of receptive and expressive language delays toward to bottom of the page is particularly enlightening.
Sunday, February 20, 2011
Sunday Digest 28
So much to share this time that it's going to be hard to choose. I'll try to spread the linky love around...
1) This post from Reports from a Resident Alien helped me understand the difference between emotional self-regulation and being mature. I love getting this woman's insights because she lives with autism and although autism is different for each individual there is a lot that can be understood in general terms from one person's experience. This post was particularly helpful for learning skills to cope with and manage emotional outbursts in a mature way...skills that I'll need to be sure my daughter develops.
2) The instinctive drowning response is a powerful analogy to describe the situation that families with special needs children sometimes find themselves in. We were there (briefly) and fortunately found the support we needed to get back on track. Now I see other families there and wonder how I can help without risking our own equilibrium. According to this post at Hopeful Parents the first step is to get into the pool.
3) Praying for Parker now has a sponsor that is making beautiful embroidered letters which can be used for tactile learning, early writing, phonics, etc. If you have access to an embroidery machine you can buy the pattern for the letters for $15 and help pay Parker's medical bills. Sweet!
4) Laura Shumaker recently had a post that highlighted the Transition Planning Kit recently launched by Autism Speaks. The kit helps families who are preparing their adolescent children to be adults, a key phase in finding support, resources, and information for more independent living.
5) Bird on the Street wrote this powerful piece describing the day she and her husband were faced with a life and death decision for their son, Charlie. They had to listen to their own instinct and overcome the naysaying of experts to choose time, information, love and life. Amazing.
1) This post from Reports from a Resident Alien helped me understand the difference between emotional self-regulation and being mature. I love getting this woman's insights because she lives with autism and although autism is different for each individual there is a lot that can be understood in general terms from one person's experience. This post was particularly helpful for learning skills to cope with and manage emotional outbursts in a mature way...skills that I'll need to be sure my daughter develops.
2) The instinctive drowning response is a powerful analogy to describe the situation that families with special needs children sometimes find themselves in. We were there (briefly) and fortunately found the support we needed to get back on track. Now I see other families there and wonder how I can help without risking our own equilibrium. According to this post at Hopeful Parents the first step is to get into the pool.
3) Praying for Parker now has a sponsor that is making beautiful embroidered letters which can be used for tactile learning, early writing, phonics, etc. If you have access to an embroidery machine you can buy the pattern for the letters for $15 and help pay Parker's medical bills. Sweet!
4) Laura Shumaker recently had a post that highlighted the Transition Planning Kit recently launched by Autism Speaks. The kit helps families who are preparing their adolescent children to be adults, a key phase in finding support, resources, and information for more independent living.
5) Bird on the Street wrote this powerful piece describing the day she and her husband were faced with a life and death decision for their son, Charlie. They had to listen to their own instinct and overcome the naysaying of experts to choose time, information, love and life. Amazing.
Friday, May 28, 2010
Shoot for the Moon (or some clay...)
This article caught my attention for several reasons.
First, check out the darling face with the sock monkey. The title says he inspired his family to raise money to help children with CP. Heck that face would inspire me to just about anything!
Then, well, I just published a post about CP, so I was already in that groove.
Third, skeet-shooting? In the last year I thought I had heard just about every possible fundraising idea: walks, dances, bike rides, motorbike rides, cake sales, CDs, etc. etc... I had never heard about clay pigeon shooting as the basis of a fundraiser, but...
Wow, does it work! This family initially thought they would raise $5000 and call it a good day. On their first try they raised $55,000, and all combined they've raised $225,000 for the Greensboro Cerebral Palsy Association Program and the Gateway Education Center. How amazing is that! This year's contest is tomorrow. Here's hoping for a record breaking year! If you're in the Summerfield, NC area there's no cost to attend and cheer on the competitors, or the hosts.
First, check out the darling face with the sock monkey. The title says he inspired his family to raise money to help children with CP. Heck that face would inspire me to just about anything!
Then, well, I just published a post about CP, so I was already in that groove.
Third, skeet-shooting? In the last year I thought I had heard just about every possible fundraising idea: walks, dances, bike rides, motorbike rides, cake sales, CDs, etc. etc... I had never heard about clay pigeon shooting as the basis of a fundraiser, but...
Wow, does it work! This family initially thought they would raise $5000 and call it a good day. On their first try they raised $55,000, and all combined they've raised $225,000 for the Greensboro Cerebral Palsy Association Program and the Gateway Education Center. How amazing is that! This year's contest is tomorrow. Here's hoping for a record breaking year! If you're in the Summerfield, NC area there's no cost to attend and cheer on the competitors, or the hosts.
Friday, May 7, 2010
Look Who is Playing at Carnegie Hall!
There is no greater symbol of success in the world of music than playing at Carnegie Hall. It is the dream of many a musician, but a relatively small number of people ever set foot on it's hallowed stage.
Some special needs students from Florida are about to make this dream a reality. Their teacher, Mr. DeVito has been pushing back the boundaries for about eight years. First, hired as a music teacher, he found it discouraging that so few good instruments were available to his students. So he applied for some money to buy instruments. Then he started videotaping and sharing their music with other musicians. Now ten of his students will travel to New York and play with other musicians at Carnegie Hall.
Music is a wonderful way to both reach out to individuals with special needs and to be touched by them in return. One of Mr. DeVito's students is non-verbal, affected by cerebral palsy, and hard of hearing, but loves to play drums. Studies have shown that children with speech delays often respond well to learning and comprehending words that are "sung" instead of spoken. At our house we sometimes take advantage of this to transition to new activities with silly songs made up to familiar children's songs. Individuals with special needs can find great purpose and joy in making music. Perhaps even more importantly, every "typical" person who participates in and watches this concert will be reminded (or taught) that every individual can make beautiful contributions to our world.
There is a chance for you to get in on this excellent event. Donations are still needed to defray the cost of travel to New York. Follow the link to the story above and scroll down to see how to donate.
Some special needs students from Florida are about to make this dream a reality. Their teacher, Mr. DeVito has been pushing back the boundaries for about eight years. First, hired as a music teacher, he found it discouraging that so few good instruments were available to his students. So he applied for some money to buy instruments. Then he started videotaping and sharing their music with other musicians. Now ten of his students will travel to New York and play with other musicians at Carnegie Hall.
Music is a wonderful way to both reach out to individuals with special needs and to be touched by them in return. One of Mr. DeVito's students is non-verbal, affected by cerebral palsy, and hard of hearing, but loves to play drums. Studies have shown that children with speech delays often respond well to learning and comprehending words that are "sung" instead of spoken. At our house we sometimes take advantage of this to transition to new activities with silly songs made up to familiar children's songs. Individuals with special needs can find great purpose and joy in making music. Perhaps even more importantly, every "typical" person who participates in and watches this concert will be reminded (or taught) that every individual can make beautiful contributions to our world.
There is a chance for you to get in on this excellent event. Donations are still needed to defray the cost of travel to New York. Follow the link to the story above and scroll down to see how to donate.
Saturday, February 20, 2010
Olympic Fever
It has struck our house big time. We ordered up the local channels from our TV provider for the express purpose of recording and watching as much Olympic coverage as possible. It has been amusing to introduce our children to the wonders of winter sports. The toddlers giggled like maniacs while watching the luge competition. They were transfixed by figure skating. Our oldest daughter thought it was pretty amazing that four people can all snowboard the same course at the same time (me, too) and wanted to know if roller skates could work on the ice, too. She doesn't have ice skates, you see.
There have been a couple of touching moments for those in the special needs community. I was glad to see Rick Hansen, a paralympic athlete, included in the torch lighting ceremony, though disappointed he was not one of the official lighters. I also enjoyed the story of Alexandre Bilodeau who won Canada's first gold medal on home soil in Men's Freestyle Skiing. He draws a lot of inspiration from his older brother, Frederic, who is affected by cerebral palsy.
With these advocates on the big screen there is a whole network of people that work tirelessly all year long with somewhat less fanfare, though their name is well known. The Special Olympics provides excellent opportunities for individuals with special needs to find something they can excel at. There are a lot of fundraising opportunities for The Special Olympics. Each local organization does their own fundraising. I've read of Polar Bear Plunges in Utah and Celebrity Ski Weekends in Nevada. There are a lot of other ways to get involved, too. With the spotlight on Vancouver in 2010 I can't think of a better time to check it out and see what you can do.
There have been a couple of touching moments for those in the special needs community. I was glad to see Rick Hansen, a paralympic athlete, included in the torch lighting ceremony, though disappointed he was not one of the official lighters. I also enjoyed the story of Alexandre Bilodeau who won Canada's first gold medal on home soil in Men's Freestyle Skiing. He draws a lot of inspiration from his older brother, Frederic, who is affected by cerebral palsy.
With these advocates on the big screen there is a whole network of people that work tirelessly all year long with somewhat less fanfare, though their name is well known. The Special Olympics provides excellent opportunities for individuals with special needs to find something they can excel at. There are a lot of fundraising opportunities for The Special Olympics. Each local organization does their own fundraising. I've read of Polar Bear Plunges in Utah and Celebrity Ski Weekends in Nevada. There are a lot of other ways to get involved, too. With the spotlight on Vancouver in 2010 I can't think of a better time to check it out and see what you can do.
Thursday, July 30, 2009
Learning Joy - Fruit of the Spirit Part 2
The Encarta Dictionary defines joy as "feelings of great happiness or pleasure, especially of an elevated or spiritual kind." The Greek word for joy in Galatians where Paul lists the fruit of the Spirt is chara (khar-ah'), which means cheerfulness, calm delight, great or exceeding gladness. Chara also comes from the word chairo (khah'ee-ro that means to be cheerful or calmly happy. Chairo can be used as a greeting or parting wish: be well, farewell, be glad, rejoice! I wonder if this is where the expression cheery-o originated. Happy, by the way, is defined as, "feeling or showing pleasure, contentment, or joy."
I give these definitions because I have heard in the past that happiness and joy are two different emotions. Happiness is generally thought of as positive feelings arising from some circumstance - like finding a twenty dollar bill on the sidewalk. Joy is often considered to be above and beyond circumstance - like realizing that the person twenty feet away on the sidewalk is the person who dropped the bill, but being glad that you were able to return it to them, even if you really could have used an extra twenty bucks. Still our words fail us as the definitions of happiness and joy seem inextricably linked.
If it is hard to define joy, yet you want to learn what joy is you need to hang out with a child for a while. Special needs children don't have a corner on the joy market, but they can demonstrate true joy that rises above their circumstances. We embarked on a camping trip last weekend with a few families with special needs children. One girl in particular was a great example of joy to me. She has cerebral palsy (CP) and depends on a wheelchair, adaptive communication technology, and help from her friends and parents to do just about everything in her day. Because her communication computer doesn't travel well (probably especially in the heat, dust, and smoke of a campsite) we relied on her parents for the most part to communicate with her and understand what she wanted. However, there were two very clear instances when she didn't need help to express her thoughts. One was the suggestion to make s'mores for dessert the first night. Her entire body leapt with excitement and anticipation and Joy at the thought of making and eating a s'more. Her face lit up and her grin spoke volumes. The other was when her dad promised to take her swimming again after lunch. She is able to move her legs through the water and I imagine the freedom from her chair alone must be exhilirating. Again we didn't need any help to interpret the pleasure she would get from swimming with her dad.
When I lose sight of how amazing and beautiful all of life is around me and I begin to complain about some small and temporary inconvenience, I hope the image of this young lady as she anticipated such simple pleasures will come to my mind. We need to remember to find joy. It is there to be found.
I give these definitions because I have heard in the past that happiness and joy are two different emotions. Happiness is generally thought of as positive feelings arising from some circumstance - like finding a twenty dollar bill on the sidewalk. Joy is often considered to be above and beyond circumstance - like realizing that the person twenty feet away on the sidewalk is the person who dropped the bill, but being glad that you were able to return it to them, even if you really could have used an extra twenty bucks. Still our words fail us as the definitions of happiness and joy seem inextricably linked.
If it is hard to define joy, yet you want to learn what joy is you need to hang out with a child for a while. Special needs children don't have a corner on the joy market, but they can demonstrate true joy that rises above their circumstances. We embarked on a camping trip last weekend with a few families with special needs children. One girl in particular was a great example of joy to me. She has cerebral palsy (CP) and depends on a wheelchair, adaptive communication technology, and help from her friends and parents to do just about everything in her day. Because her communication computer doesn't travel well (probably especially in the heat, dust, and smoke of a campsite) we relied on her parents for the most part to communicate with her and understand what she wanted. However, there were two very clear instances when she didn't need help to express her thoughts. One was the suggestion to make s'mores for dessert the first night. Her entire body leapt with excitement and anticipation and Joy at the thought of making and eating a s'more. Her face lit up and her grin spoke volumes. The other was when her dad promised to take her swimming again after lunch. She is able to move her legs through the water and I imagine the freedom from her chair alone must be exhilirating. Again we didn't need any help to interpret the pleasure she would get from swimming with her dad.
When I lose sight of how amazing and beautiful all of life is around me and I begin to complain about some small and temporary inconvenience, I hope the image of this young lady as she anticipated such simple pleasures will come to my mind. We need to remember to find joy. It is there to be found.
Sunday, July 12, 2009
Sunday Digest 4
1. Experience the story of a family forever affected in part by a nurse's negligence. For the full context read the associated article. It is rather lengthy, but certainly eye-opening. I have met this family and their resilient spirit is amazing.
2. Watch this advertisement sponsored by Autism Votes/Autism Speaks, and send a message to Speaker Nancy Pelosi to get autism insurance reform as part of the National Health Reform package. If you agree with the message of the ad you can send an e-mail to AmericanVoices@mail.house.gov with the following suggested text:
3. Some good advice on what to do with the inevitable looky-loos.
Smile and say hello. This may give them an awareness that they are staring and
that you've noticed. I love it.
5. Please join me in praying for these special needs children in Florida who have lost their parents (again) this time in a brutal murder.
You can see a list of Sunday Digests (and other posts) here.
2. Watch this advertisement sponsored by Autism Votes/Autism Speaks, and send a message to Speaker Nancy Pelosi to get autism insurance reform as part of the National Health Reform package. If you agree with the message of the ad you can send an e-mail to AmericanVoices@mail.house.gov with the following suggested text:
Dear Speaker Pelosi/Leader Reid,
Our family believes that health care reform that does not end autism insurance discrimination is unacceptable. Please go to http://www.autismvotes.org/ to view an important TV ad, which is currently running on CNN, CNBC and MSNBC. We hope that moving forward, you will be sure to stop the discrimination that our child, and millions like him/her around the country, faces on a daily basis. Our children deserve appropriate access to the medical treatments and therapies they need for their medical conditions.
With kindest regards,Your name
Your City and Stateupdate 7/18 - when I tried the AmericanVoices e-mail, my message bounced back to me. The mailer-daemon did not tell me why it failed - perhaps the mailbox was full when I sent my message. Try a Google search on "Pelosi contact" and you'll see a link for the Speaker's website where you can send an e-mail directly. This will work if AmericanVoices does not.
3. Some good advice on what to do with the inevitable looky-loos.
Smile and say hello. This may give them an awareness that they are staring and
that you've noticed. I love it.
4. For friends who are caring for both aging parents and special needs children. You are not alone. This, in general, looks like an encouraging blog. I know I'll be checking it out...
5. Please join me in praying for these special needs children in Florida who have lost their parents (again) this time in a brutal murder.
You can see a list of Sunday Digests (and other posts) here.
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