Tuesday, June 30, 2009

The Fruit of the Spirit

I have been feeling challenged lately to walk by the Spirit. Back in May I attended a retreat fully expecting God to convict me of some area of my life that I needed to "work" on as that had been my experience at similar retreats in the past. Instead I found God telling me to enjoy my life, to fully experience what He is calling me to do, but to stop "striving", to stop trying to do it on my own power. One piece of that was a commitment to try to spend some time each day praising God for what He is doing. That has been harder to do than it sounds - with our busy household I can easily get through the day without stopping for even a few minutes to contemplate what God is doing around me. I'm working on finding a way to remind myself, even if it is right before I finally crawl into bed. Just writing about it here I'm hoping will make a difference.

Last week our church had a special prayer evening and one portion of the evening was focused on confessing and repenting in preparation for celebrating The Lord's Supper (communion). As I participated in this God directed me to Galatians 5:16-26 where the Apostle Paul teaches us the difference between living by the Spirit rather than by our sinful nature. It is a striking contrast: fits of rage, selfish ambition, hatred, etc. juxtaposed with love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.

It seems like the times I struggle most with living out the fruit of the Spirit is in my relationship with my special needs child. I know God is using her to refine my character and make me more like Him, and this life in the Spirit seems to be a key step. For the next several posts that I draw from scripture, I'll be writing about the fruit of the Spirit (I just noticed that it is singular FRUIT even though it has several parts...like the triune Godhead, how fitting). I know God will use it in my life and I hope it will be encouraging to you as well.

Saturday, June 27, 2009

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."

Wednesday, June 24, 2009

Movie Review - Emmanuel's Gift

I do not recall how I heard about this movie or how it came to be added to our Netflix queue, but I am glad I watched it. Emmanuel's Gift tells the story of Emmanuel Ofoso Yeboah who was born with a deformed leg in Ghana. Although there is a fairly large population of people in Ghana with some form of disability, they are often treated as outcasts, left to go begging in the streets. Emmanuel wanted more than this for himself, and for others. He started by learning a trade - shining shoes for $2/day. Though he actually might have gotten more money by begging, he preferred the dignity of earning a living. Somehow he learned about the Challenged Athletes Foundation and applied for a grant to buy of all things, a bicycle. Once he overcame the difficulty of riding a bicycle with one leg he decided to ride the bicycle across Ghana (about 380 miles) to raise awareness about the plight of disabled people in his country, and to spread his message of victory over disability, and dignity in personal achievement. The story goes on as Emmanuel eventually travels to the United States and decides to accept medical treatment for his condition so that he can be even more effective in bringing hope back to Ghana.
My only frustration with this movie is that a great deal of it is told with English subtitles. This is probably a personal weakness, but I have a hard time watching a movie and reading subtitles at the same time, and sometimes I lose track of it so much that I can't actually finish watching the movie. Because this movie moves back and forth between spoken and written English I had an especially hard time keeping up with all of the dialogue and the story line.
The story itself is amazingly inspirational. If you need someone to convince you that disabilities should not be allowed to exclude a person from any activity they choose, then Emmanuel would be a good place to start.

Sunday, June 21, 2009

Sunday Digest 3

This time around I've crafted a special focus on fathers for Father's Day. These Dads will inspire you to continue the task of special needs parenting with joyful determination.

The San Francisco Giants hosted an autism awareness night in honor of their former first baseman and now special assistant, Will Clark, father of Trey, who is autistic.

One special single Dad in Texas who has built his life around his daughter, Olivia. (You may need to scroll down to see the text.)

Meet this Special Olympics speed skating coach and father in New Jersey.

And then there is a man who fathers four special needs children and also puts his life on the line for his country by serving in the Navy.

Because: Dads are Vital to Special Needs Kids!

There is no lofty article written about my daughter's father, and yet in this way I hope to honor him and all of the unsung special needs fathers out there. May God bless you for all you do!

You can see a list of Sunday Digests (and other posts) here.

Thursday, June 18, 2009

Kid's Eye View - Wonder

This is something that probably every parent learns from their child. It seems like somewhere along the road to adulthood our ability to stop and simply enjoy the amazing features of God's creation diminishes. Bringing a child into the world gives us a fresh set of eyes when we take the time to pay attention to what they are amazed by. There have been several examples of this in our family lately, but a few were really highlighted in my mind as I prepared this post.

Our daughter has recently gained an avid interest in observing insects. With the warmer weather she began to ask my husband to help her catch bugs and she moved on to catching them on her own. One bug that they caught together was especially interesting. It is pictured here. One thing that made it so interesting was that my husband didn't know what it was and had to look it up on-line. This might not seem so strange, but my husband has always liked insects and knows a great deal about them. He briefly considered a career as an entomologist. Needless to say he is truly happy to share this interest with our daughter, but it was fun to see her interest actually teach him something, too. Her newfound fascination actually expanded something that he already enjoys. It is, by the way, called a snake fly.

A similar, yet subtly different, experience happened during a recent road trip. We had been in the car far too long that day, and were growing weary of the whole experience when we drove into a rain storm fairly late in the evening...perfect rainbow conditions. We drew our daughter's attention to the rainbow and suddenly the attitude in the vehicle changed as she exulted over each arc of color she saw. She was counting them and trying to tell the babies about them, excitedly telling us what she saw. Again, I always enjoy rainbows - they remind me of God's promise to Noah, and the beautiful colors make the rain seem worth enduring, yet somehow sharing my daughter's joy made the experience fresh and new. I found myself looking harder to see how much of the arc was really visible, and rejoicing when the colors were vividly ending on the road in front of us. Without her perspective it might have been just another rainbow.

Lastly, a few months ago my daughter said something that at first just seemed silly, but when I took the time to listen I realized was quite profound. Something my busily speeding "normative" brain has probably never considered. It was bath time and as I poured water over her hair to rinse out the shampoo she said, "Mom, water is always wet." I thought to myself, "Well of course water's always wet," but to her I said, "What do you mean?" because I've learned that I sometimes need to probe a little deeper to understand what she is trying to express due to her language challenges. She replied, "Clothes are sometimes wet and sometimes dry, but water's always wet." The chemist in me wanted to explain this as a state of matter and leave it at that, but from a more philosophical viewpoint I found it quite an interesting point. We overlook these finer points of the world around us when we've learned to explain "how things work" and get on with "making them work for us" but the wonder of the world around us is ours to enjoy when we take the time to see them through the eyes of a child.

Monday, June 15, 2009


Have you noticed that parents just love to compare notes on their kids. It seems to be a favorite way to pass time in our area. Every milestone from first social smile to high school and college of choice is inquired about, followed by, "Oh, Susie did that at age..." or "We're so proud of Jim, he's headed to..." I'm not sure why we do it, and I suppose it is simply harmless conversation fed by healthy parental pride. It can be quite painful, however, when your child is delayed in some area and another parent insists on drawing attention to the gap. Even before we knew the extent of our daughter's challenges it was frustrating to have other parents emphasize how well their child was doing in a particular skill set.

I am slowly learning that the most important thing, instead of comparing our kids, which most experts agree is fruitless anyway since even normative children do things at different ages, is to look for progress. Noting their own personal achievements is much more satisfying. Our daughter's speech teacher recently did an assessment and was pleased to find that our daughter's language skills had improved in a couple of areas to that of an average five year old. Considering that a year ago she was testing at a three year old level, we were quite pleased with her progress. Only later did it occur to me that in my past life I wouldn't have expected to be excited over my child testing average in any area. This shift in attitude in itself is thrilling. I can rejoice in my daughter's achievement in her frame of reference rather than compare her to some external "standard."

Friday, June 12, 2009

Artistic Expression

I wanted to share this story I found via twitter. It is another example of a creative way to bridge communication between "typical" people and people with special needs. I am so glad for places like the MacDonald Training Center that seek to help people express their creativity and find ways to be productive. Treating people with dignity and as valuable individuals is essential to changing our culture's "typical" response to those with special needs. Be sure to check out the photo gallery embedded in the news story.

I think I was particularly drawn to this story because my daughter can be quite artistic. It is something I try to encourage in her. Her painting and drawing are usually quite abstract. Often she composes her colors and balances the various forms nicely. Recently her artwork is becoming more representational. Developmentally I am glad for this, and yet it is sad to see her putting aside some of the free-form, vibrant methods I have come to love. I find myself hoping that this piece of her will not totally disappear.

Tuesday, June 9, 2009

Beating Boring Barriers

There is no such thing as true boredom when raising a special needs child. There is always more to learn, another challenge waiting around the corner, and all of those great curve balls that come our way. However, there are times when we can feel a bit "stifled" by some of the restrictions that seem imposed on our lives by meeting our children's needs.

My daughter, for example, is very particular about public restrooms. She is unwilling to use many of them although her reasons are not always clear. We still go to a lot of different places, but our subset is much smaller than it could be. She loves to play at parks, but until recently was only willing to use the restroom at one park, which made it difficult to attend play dates and other social gatherings at different parks. Gradually we are working together to try new places. Today she actually asked to go to a different park than the one we usually go to. Our world is expanding! -- but it's been a two year process. Parents of typically developing children do not understand why it is such a big deal to go to a different park. They may go to a dozen different parks with their children without giving it a second thought.

How do we cope with the barriers and boundaries that our children's special needs impose on us?

First, recognize that life changed the moment you became a parent regardless of the special needs your child has. As a parent we are called to meet our child's needs to the best of our ability. Jesus teaches in Matthew 7:9 --
"Which of you, if his son asks for bread, will give him a stone? Or if he asks
for a fish, will give him a snake? If you, then, though you are evil, know
how to give good gifts to your children, how much more will your Father in
heaven give good gifts to those who ask Him!" (NIV)

In other words, we give our children what they need and if those needs have a high cost, we still strive to meet them. We bear the image of God in these acts of provision.

Second, remember that the time is short. Paul writes in I Corinthians 7:29-31 --

"...From now on those who have wives should live as if they had none; those who mourn, as if they did not; those who are happy as if they were not; those who buy something, as if it were not theirs to keep; those who use the things of the world, as if not engrossed in them. For this world in its present form is passing away." (NIV)

The time of being a parent is short, and beyond that, the time of this world is short. Remembering that we will look back on this brief span of eternity as "light and momentary troubles" (II Corinthians 4:17) helps keep it all in perspective.

Third, we work wherever possible to expand our world and the world of our children. We try new things, new places, and introduce new people, new foods, new ideas. We cannot do it all at once. It takes planning, patience, and perseverance, but we can proactively seek change. I believe it is important to strive for growth in at least one area at all times. Otherwise the sphere of experience will not expand, but it will naturally contract.

I would love to hear how your family overcomes the barriers that might otherwise hem you in. Leave a comment by clicking the link below.

Saturday, June 6, 2009

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.

Wednesday, June 3, 2009

Book Review - Handle With Care

As an incentive to myself for hanging in there with developing this blog, I promised myself that I would buy the novel, "Handle With Care" by Jodi Picoult. I can't remember where I first saw it advertised, but I was hooked by the synopsis. "What if their child had been born healthy?" I had not read a Jodi Picoult novel before, but it was clear the story was relevant to this blog, so I was very interested to see what it was all about.
The story did not disappoint. True to my usual novel reading habits it became difficult to get my regular chores done because I really just wanted to read "one more chapter." I admire Ms. Picoult's ability to tell the story through the voices of the several very different characters and through different time frames. I have read other authors that do this poorly and it is confusing and detracts greatly from the reading. Ms. Picoult does it quite well, and I think it made the story more interesting to read. The story revolves around a blended family: mother, daughter from previous relationship, father, and daughter, Willow. Willow is born with Osteogenesis Imperfecta (Type III). I had not heard of this condition before so I was intrigued just from the standpoint of wanting to learn more about it. OI affects the way bones develop such that they are very brittle and break very easily. Willow's parents find out that they could have learned much earlier in their pregnancy that Willow had OI and that they can pursue a legal case against their obstetrician for "wrongful birth". The parents both love Willow deeply, but the mother, Charlotte, feels the wrongful birth suit may be their only chance to afford all of the treatment and therapy that Willow will need. The father, Sean, feels that the implication that Willow should not have been born is too emotionally damaging. The story is intriguing in that it explores so many facets of the spiritual, ethical, relational and financial issues surrounding special needs parenting.
There were two things that I did not enjoy about the book, and I suppose both are personal preference. First there is a fair amount of profanity. It is not as excessive as in some other books, and perhaps it is "realistic" in the sad sense that people do speak to each other in those terms these days, but I don't need to read it in an otherwise perfectly good story. Second, I did not like the ending. I hope without giving away too much for those who might be interested in reading this for themselves, there are three things I did not like about it. First, I prefer endings that either resolve the various issues and let the characters resume a peaceful slumber between the covers until the next time I decide to read them or endings that make me want to know more about what happens to the characters either to invent in my own mind or to read in the sequel. This ending didn't do either of those. It just hangs limply in my mind. Second, I thought it was a little too obvious. There is a lot of foreshadowing through the book that left me thinking, "Oh, I hope she's not going to..." and then...alas. Lastly, it seemed most unlikely given the characters as I had come to know them through the story, particularly Willow and Charlotte.
This leaves me curious...which side of the story do you think you would support - Charlotte or Sean? From my previous posts I've probably made my opinion clear, but I'd sure like to hear your thoughts!

Other book reviews:
A Regular Guy


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