Generous

A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. She is like the merchant ships, bringing her food from afar. She gets up while it is still night; she provides food for her family and portions for her female servants. She considers a field and buys it; out of her earnings she plants a vineyard. She sets about her work vigorously; her arms are strong for her tasks. She sees that her trading is profitable, and her lamp does not go out at night. In her hand she holds the distaff and grasps the spindle with her fingers. She opens her arms to the poor and extends her hands to the needy. (Proverbs 31:10-20)

We're revisiting the Proverbs 31 woman, continuing to focus on her character and who she is. In this week's verse we learn first more detail about her work - that she spins thread, then we learn that she is generous to the poor and needy. By the juxtaposition of these verses I imagine that she is generous not only with her money, but also with her time and resources. Perhaps she gives away some of the thread or cloth that she makes. She does this knowing the principle already explained earlier in Proverbs:


"...blessed is he who is kind to the needy." (Proverbs 14:21b, NIV)
"A generous man will himself be blessed, for he shares his food with the poor." (Proverbs 21:9, NIV)


It appears that in God's economy being generous is a safety net both for the recipient and for the giver. There are several provisions in the Old Testament law to protect and provide for the poor, the widow, the orphan and the alien.


There is a whole lot of needy going on in the world around us. I pray that God will show me new ways to be generous to the needs He puts in my path.

Lennox Gastaut Syndrome

I have to admit I had a hard time putting this post together. This sounds like a particularly complicated and devastating disorder - one that saps vitality from children who may otherwise seem healthy and whole. I start most of these posts from very little personal knowledge, so they require a fair amount of research. I need to be as accurate as possible without copying verbatim from the resources I've looked at, and I try to be sensitive to parents, caregivers and individuals who may be affected by the conditions I'm learning about. All of that put together meant this post was tough and therefore late, but I hope will still be interesting and useful to you. 

I had never heard of Lennox Gastaut Syndrome (LGS) until I saw another special needs parent's post about her child on a discussion board I belong to. As usual I was curious to know what is involved with this condition, and started my research. There is a lot to learn. LGS is a form of pediatric-onset epilepsy that can be quite severe. Fortunately it is fairly rare, occurring in 1-4% of pediatric epilepsy patients. One devastating effect of this disorder is that it usually begins between the ages of 2-6 years and the child may be typically developing prior to having their first seizure. With each seizure the child may regress, gradually losing skills. Even cognitive function may be affected. LGS generally causes various types of seizures (the seizure type may change as the child gets older) and often the seizures cannot be controlled with medication.

Besides the obvious impact of epileptic seizures, individuals with LGS often exhibit behavioral challenges, personality disturbances, mood swings, poor social skills, attention seeking behavior, and challenges understanding information. These changes may be brought on as side-effects of the seizures or of the medications used to control seizures.

Sometimes there is no known root cause of LGS, but often there is evidence of brain injury due to lack of oxygen during pregnancy or birth, an infection (like meningitis), or congenital brain malformation.

Because LGS seizures are often not controlled by medications, alternative treatments are often used. Among these treatment options are:

• ketogenic diet -  a high fat, low carbohydrate diet used to force the body to burn more fat than sugar. The diet is known to help reduce seizure rates in children with some forms of epilepsy. There is a modified Atkins diet being studied for use in adults.
• vagus nerve stimulation therapy - this involves implanting a device under the arm or in the chest that sends electrical impulses to the vagus nerve, which in turn helps the brain regulate electrical signals to help control seizures. The device can be activated with a magnet to prevent or control a seizure during the event. This sounds to me like a pacemaker for the brain.
• surgery - there are several surgical options, but these are considered as a last resort, usually, and will only be attempted if critical brain functions will not be affected.

There are some things you can do to help advocate for individuals with LGS and other forms of epilepsy.

• Learn more and help spread the word. There is a wealth of information available at the LGS Foundation.
• The LGS Foundation accepts donations to help fund research and to help support families affected by LGS.
• The 5th Annual Walk for Epilepsy will be held on March 27, 2011 in Washington, D.C. Click here for more details.
• Even if you can't make it to Washington D.C. on March 26 (the day before the walk), consider wearing purple and if someone asks you why tell them it is to raise awareness for epilepsy.

For more information check out these sites:

• The National Institute of Neurological Disorders and Stroke
• epilepsy.com

CD review - Ralph's World

Have you met Ralph? We were introduced to Ralph when our daughter was about 6 months old. Some friends who live in the Midwest sent his CD to us. I remember putting it in the CD player in our temporary living room (we were remodeling at the time) and watching her bob along with the music. She had just learned to sit up, and I had no idea of the journey that was in front of us.

We listened to Ralph a lot while she was playing and I was doing whatever it was I used to do...She loved his music so much that I would often sing his songs to her while I was pushing her in her baby swing in the back yard. As her language delay became more evident we listened to even more music. Ralph was always a part of the mix. We had collected four CDs and a DVD by this point. She liked all of them, and it was definitely something that got her talking, "Sing Freddy Bear...sing!" Freddy Bear is the first song on Ralph's World, and it was love at first listen. All of the music is kid friendly without being hard for adults to listen to, if you know what I mean. Ralph does a good mix of original songs and childhood classics like the ABC song (then backwards) and Do You Know the Muffin Man. I still enjoy listening to all of the music and I have heard them many, many times. Really, it's good stuff. If you like the Beatles you'll like Ralph.

 I recall telling my daughter during her potty training (which was lengthy) that I would take her to a Ralph concert when she learned to use the potty. Well, Ralph doesn't make it to the West Coast very often. There were a couple of shows that we couldn't make it to, then after the twins arrived, followed shortly by our daughter's diagnosis the Ralph concert kind of fell by the wayside. Last January I got wind of another Ralph show happening in March just a few miles away. I got tickets for my daughter's birthday present and we went for a mommy and me date. She was so happy to get to meet Ralph in person, and even stayed after to give him a hug. We now have an autographed copy of Ralph's World. It was a relatively small concert, so Ralph did a lot of interaction with the children. He had them up on stage, down in the "mosh" pit, and running all over the auditorium, actually. I had worried a bit about how long my daughter would be able to sit in her chair and listen. I needn't have worried. I don't think a single kid there sat down the whole time. It was really fun.

One of the things I like most about Ralph, besides his music, is that many of his concerts are benefit events. The show we went to helped support policemen and their families. This weekend, Saturday 9/25, Ralph is back on the West Coast in San Francisco doing a show as part of the Kidaroo music festival. Proceeds from the show will benefit Yick Wo Elementary school. Back in the Midwest on Friday 10/22 Ralph will do a solo acoustic program to benefit the Jasper Against Batten Foundation, which fights a rare childhood disease. You can see a full list of his shows here (click on Tour Dates). He also does some "adult music" in his alter ego, Ralph Covert and the Bad Examples. So anyway, if you haven't met Ralph yet, you should soon. He's one of our heroes.

Taking it to the Next Generation

A couple of years after we got married, one of my husband's clients sons started a rock band. We had a lot of fun going to a couple of their early shows, and were surprised by how good they were. They are still going strong, writing more songs, doing more shows, and maturing their own style. I don't make it to a lot of rock concerts these days (hmmm...) but I just might have to make space on the calendar for one of Scraping for Change's upcoming shows.

Our friend posted this on facebook the other night:

We, Scraping for Change, will be playing a stripped down show at Oak Grove High School in San Jose on Friday, October 15. This is a benefit show put on by the Academy of Life and all proceeds go to high school kids with disabilities...

 $10 tickets for dinner and a rock-n-roll show and it all goes to help out teenagers with special needs. I call that cool advocacy, and taking the mission to a whole new generation.

If you are in the San Jose area and interested in the show you might want to check out:

• The Scraping for Change website (also linked above)
• A sample of their live music from YouTube (the song is called Breaking the Silence, and is the title of their new CD.)
• Oak Grove High School
• Academy of Life (hopefully I will have a link here soon...

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.

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.

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.

The Never-Ending Bake Sale

I'd like to introduce you to a young lady of impeccable character and taste! It gives me such hope when I hear about future leaders like Katie Unkle. Katie's older brother was diagnosed with autism when he was six years old. As they grew up together Katie was bothered by how people mistreated him. She decided to do something positive with her frustrations. She took her gift of baking (chocolate velvet torte to be specific), created a non-profit Cakes 4 a Cause at the age of 14, and uses 100% of the net proceeds from her cake sales to donate money to autism research and advocacy via the Doug Flutie, Jr. Foundation for Autism. You can read the full story and watch a video to meet Katie and her brother, Ben, here.

For $35 they will ship a torte anywhere in the United States.

If you happen to be local to Southlake, TX you can pick one up for $16.

Can't go wrong with chocolate velvet torte.

Sunday Digest 13

First a little celebration: This post is my 100th post on The Simple Life in its "new" form. From the archive count at the side it *looks* like my 101st, but one post is really my archive by topic which doesn't really count...just my way of making a separate page that lists all of my posts under their various categories instead of by date. Seems like a big deal that 100 times I've sat down at my computer and let the words flow...attempting to make what is a very complicated dance into The Simple Life. Just a small celebration. Probably calls for some chocolate.

Now to the business of the day:

1) I have been thinking a lot and wondering about what is happening to special needs individuals in Haiti. I'm sure most everyone there is suffering one way or another, but I wonder if there is a bigger gap of need when one is challenged in every day life, much less in a disaster of this scale. Here is a story I found about an Irish missionary who works with special needs children - the story of her survival, and her continuing work. I encourage you to check out the work of Partners International and Compassion in Haiti. These are two organizations that we have supported long term and trust to handle funds effectively.

2) Special thanks to my blogging buddy SquiggleMum for sharing this post from her husband SquiggleDad(?) on depression. It has been increasingly impressed on me that parents of special needs children are especially prone to fall into depression. There is an almost endless cycle of stress and grieving that leaves a razor thin edge of psychological and emotional well-being. The image of depression presented here was powerful enough to explain it to the few who do not struggle with this mental monster and yet encouraged me to take a new perspective when I'm feeling blue.

3) A friend from Facebook pointed out this resource for ADD/ADHD families. I have only glanced at Dr. Hallowell's blog, but it seems to have some good information for relationships with ADD/ADHD individuals: both from a marriage and parenting perspective. I may add some of his books to my list of things to review in the future...so watch for those.

4) So glad to find Laura Shumaker's City Brights blog. Laura's book "A Regular Guy" was the first book I reviewed on The Simple Life. I really appreciate Laura's voice as an experienced special needs mom...perhaps in part because she lives nearby so I know she lived this life right where I live it. I'll be happily following her blog...she also contributes regularly to 5 Minutes for Special Needs.

5) This post at Miracle Baby voices a struggle of many special needs parents...am I doing "enough" to help my child progress and overcome their challenges.

Acoustic for Autism

I wanted to let you all know about this CD (also available for digital download from iTunes or Amazon) put together to benefit autism research, and awareness. All (100%) of the net profit from this project will go to support autism charities. The two friends who produced the album both have autistic children and wanted to make a difference. Twelve different artists have contributed acoustic music (some previously unreleased) to the project, all following the theme of hope and healing. You can read a review by Steve Morse in the Boston Globe here.

This is a pretty straightforward action plan...If you think you might like the music, buy the CD. Tell others about it and encourage them to buy it, too.

It just shows how people with big hearts can use their talents to work together to make progress against an increasingly challenging problem.

Warm Coat Drive

Here is a twist on advocating for special needs children. How about helping them learn that they can help others? This article highlights an after school program for special needs students that is near us. Last year the students started a service project to collect 100 coats for the One Warm Coat project. They were able to collect 273 coats and donate them to the Bay Area Rescue Mission. Some of the students went on to volunteer with other non-profit groups. This year the students are planning another coat drive and hope to exceed their collection from last year.

Some action steps to consider:

• If you live in the San Francisco Bay Area consider donating a coat to these students. Gently used or new coats are welcome. Donations can be delivered to George Miller Center, 2801 Robert Miller Drive, Richmond, CA by December 19. For more information call 510-374-3981 or send an e-mail to clam at arcofcc dot org.

• If you don't live nearby, look around for other programs that work with Special Needs students and want to encourage them to serve their community. Support a program that is already in place or help get one going.

• If you are a special needs parent, consider how you can encourage your own child to serve his or her community. A couple of years ago we went to an event where we helped make care packages for needy children. At that time the simple act of putting the package together and drawing a little picture for the recipient was about all my daughter could understand, but it was a start. She still tells me sometimes that she wants to give things to someone who doesn't have one of those (sometimes it's a sibling, though, so I'm not sure she understands the idea of charity :-). I'm sure this is an area we'll continue to work on, and the upcoming holiday season offers a great opportunity to do so.

Puppy Love

We spent some time in the last week taking care of a couple of dogs for one of our neighbors while they were out of town. It was a lot of work, but also a good experience for my daughter. She now knows how much time and energy goes into really caring for a dog. Exercise, feeding, cleaning up after them, she helped me do all of these each day. I was surprised (and yes a little chagrined) when at the end of all of that work she was still telling me that she would like to have a dog. For now I am putting her off. I've given her a definite date far in the future that she can ask seriously about getting a dog. She already has worked out what color she wants it to be, what gender she wants it to be, and she has even picked out a name. Heaven help us.

I've posted before about the use of assistance dogs for children with autism. If and when we embark on the adventure of dog ownership I would love to find an animal that is suitable for use as an assistant, or at least one that is therapeutic, with a calming and regulating effect. All of this thinking about dogs made me really excited when I found this link to a story about the Lions service club which is now training service dogs for children with autism. The Lions have been involved with training service dogs for visual and hearing impairment for 25 years, but due to increasing rates of autism they have added a program to train dogs to meet this special need. You can check out the website for the Lions Foundation of Canada Dog Guides here.

According to their website there are plenty of ways that you can get involved:

• Make a donation - The Lions Foundation receives no governmental assistance.
• Adopt a puppy - Literally or figuratively. For a donation of $100 you can help defray veterinary care for a future guide dog and receive a certificate commemorating your assistance. Future guide dogs also require special training and socialization in their first year and the Lions Foundation uses foster families to provide that environment for their dogs. You can learn more by looking at the...
• Opportunities page - where both paid and volunteer positions are listed, along with application form links.
• Also check out the wish list.

Adventure for Autism

There's nothing like a 25,000 mile bicycle ride to get things rolling. That's Adam Biel's theory anyway. With the statistics on autism now saying that 1 in 91 children age 3-17 has an autism spectrum disorder it's time! Starting in Alaska June 25, 2009, and eventually covering a good bit of the western hemisphere in a year and a half to two years, Biel hopes to raise $40 per mile. He also has extended layovers planned in some cities to work with local agencies to help raise funds. With a background in business (B.S. from University of North Carolina, Chapel Hill; internships with banking and consulting firms) this pet project gone wild will undoubtedly be a success.

Here's how you can help:

Visit adventureforautism.com and click on the Help AfA post-it-note. Biel welcomes a night in a warm home rather than sleeping in the tent he carries on his bike. A night in a hotel room is appreciated, too. AfA also suggests organizing an autism awareness bike day if Biel rides through your area. You can check out his route at the above link.

Visit L'Arche an organization in Canada (and worldwide) that works to integrate people with disabilities in society and Pathfinders for Autism a parent-initiated organization based out of Maryland. The funds Biel raises will support these two organizations. Check them out. See what else they might need.

If nothing else, help spread the word. Our media market hasn't picked up Biel's story yet. With all the doom and gloom we're hearing these days wouldn't you like to hear some good news? Tell all your friends on facebook or twitter to join the adventure.

Rainbow Riders

Here is another great organization serving special needs children that can use some help. Located in Monmouth, Illinois, the Rainbow Riders Therapeutic Horseback Riding program gives special needs children the thrilling experience of riding a horse, but the experience does more than just boost self-esteem. The movement of the horse "provides healthy exercise while improving the riders strength, circulation, muscle tone and sensory integration." Each client is given an individual therapy plan developed in partnership with education and medical professionals. The most amazing piece to me is that Rainbow Riders charges at most 14% of the actual cost to provide the therapy to the clients. Some clients even qualify for paying only $1 per session (0.7% of cost) due to financial needs. The remaining costs are all defrayed through tax-deductible donations and volunteer efforts. Check out some inspiring photographs here and then:

• Donate - Rainbow Riders receives no government funding for their program. They rely on donations and grants. All donations are tax-deductible. You can sponsor children or horses at varying amounts.
• Volunteer - If you live near Monmouth, Illinois, Rainbow Riders would welcome your donation of time. They say no horse experience is needed.
• Spread the word - twitter, facebook, digg, whatever your social media of choice I'm sure Rainbow Riders would appreciate the shout out.
• Research - If you don't live near Monmouth, Illinois, but you are interested in helping a similar organization, check out the North American Riding for the Handicapped Association (NARHA) website to find a certified center near you.

P.S. I realized after posting this that I should also point you to my friend Janet Ann Collins' blog where she recently posted a review of children's books about this type of therapy. Although I've been seeing referral lists, advertisements and articles about equine therapy for over a year now, I'm sure that reading Janet's post at least subliminally nudged me to post about Rainbow Riders when I was choosing my topic. I do so love to give credit where it is due...

Take Flight for Kids

I found this article late this evening, and I am wishing I had read through my google alerts a little earlier in the week, but alas, we'll have to wait for the next Take Flight for Kids event. It looks like these happen on some scale throughout the year. How many children do you know who've had the opportunity to fly a plane? Add the qualification of being a special needs child and my guess is the number falls pretty near zero, unless, that is you have been to one of these events around the Bay Area. The event is totally free to families who attend (up to 5,000 people!) and includes BBQ, aircraft displays, live entertainment and the chance to fly a plane. You can imagine that sponsoring an event like this requires a lot of money and a lot of volunteers, including skilled pilots.

Visit the Take Flight for Kids website to:
* Make a donation - $10 sponsors a family's BBQ lunch
* Volunteer to help run the event
* Volunteer as a pilot
* Become a sponsor or exhibitor at the next flying event

Help provide a once in a lifetime experience to a special needs child.

Four Legged Advocates

Some time ago we were watching a late night TV program about amazing animals and saw this story about Karen Shirk and her service dog, Ben, who saved her life in a couple of different ways. You can watch the video here. She then went on to begin her own organization (4 Paws for Ability) to train and place service dogs with people who are otherwise turned away or cannot afford the long waiting lists of other organizations. I remember wondering whether or not a service animal would be helpful to our daughter and others on the autism spectrum.

About a month ago I saw several different posts on Twitter and various blogs about 4 Paws for Jude. This family is trying to raise $13,000 to get a dog from 4 Paws for Ability. I feel like the story has come full circle. I now know that service dogs can be helpful for people with autism, and I can have some part in helping others learn about this great organization.

Here are some action steps:

• Help Jude by visiting his website and exploring the various options for donating to change this little boy's life. According to their thank you page they've now raised $4062. I'm not sure when this was last updated.
• Check out 4 Paws for Ability and visit their "How to Help" page. Options include donating puppies, sponsoring puppies, foster caring for puppies, providing something from their wish list or as they say, "just give."

Seattle Children's Playgarden

I saw a story about this all-inclusive playground on a Twitter post. I wanted to check it out because this is the type of environment I think should be made available to every special needs child. Imagine a park where "typical" kids play side-by-side with "special needs" kids, and both of them can forget which category they fall into and just be kids! Interacting with typical peers is particularly beneficial for children on the autism spectrum, and this looks like a great environment to make that happen. The park is also accessible to children with physical challenges - wheelchairs, walkers, etc. Seattle is near and dear to my heart because I attended college in nearby Tacoma. Hopefully next time we are in that area we can visit this park and see it for ourselves. Some of the equipment actually looks similar to a local park we go to often. My daughter can sit in the spinning seat forever, spinning away and never getting dizzy.

So here is how you can get involved. Check out the Playgarden's website. They are in the midst of finishing some construction projects. Your donations could help them reach their goals, or help a special needs child attend their Summer camp even though their family also has financial needs. They accept non-cash donations (check out the wish list tab under you can help)...donate your "clutter" (11 foot hammock anyone?) to some kids who will really enjoy it. If you live in the Seattle area there are volunteer positions available, too. Want to do something more but don't live anywhere near Seattle? Consider working with others to make even more places like this available to children everywhere.