Monday, May 31, 2010
Friday, May 28, 2010
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.
Wednesday, May 26, 2010
Ephesians 6:10-20 is the Christian's Field Manual for spiritual warfare. It explains our equipment and how we are to use it. It is a familiar passage, but one that we need to review often as we go through our day to day struggles. Paul urges us to put on the full armor of God:
- The Belt of Truth - is the first piece of armor a Roman soldier would put on. The other pieces of armor and equipment attach to this. It is central and foundational. We must know what Truth is, what is true, and what is not.
- The Breastplate of Righteousness - protects the heart and lungs, vital organs and the center of our being. Righteousness here refers to the character of Christ
- The Footwear of readiness that comes from the Gospel of Peace - Isaiah 52:7 (NIV) says, "How beautiful on the mountains are the feet of those who bring good news, who proclaim peace, who bring good tidings, who proclaim salvation, who say to Zion, "Your God reigns!" Isaiah says these probably bare feet are beautiful. Paul describes the feet as protected and supported, ready to go where they are sent. Both bring Good News!
- The Shield of Faith - a large shield that the Roman soldier would soak in water to combat flaming arrows shot by their enemies. Faith means total dependence on God's sovereignty. If our faith is soaked in the Living Water we can resist the flaming barbs lobbed at us by our enemy.
- The Helmet of Salvation - protects the mind and thought life. Knowing we are saved can provide assurance in times of doubt and direction in times of temptation. The helmet is also a symbol of victory. Salvation is the ultimate victory over our enemy.
- The Sword of the Spirit - the Word of God. This is our only offensive weapon. We must know it to use it.
There are two ditches of error that one may fall into regarding spiritual warfare. One is to consider this the predominant and primary metaphor and reality of the Christian walk. I call this seeing a demon around every corner. The danger in this worldview is that we can avoid taking personal responsibility for some of our troubles, (the devil made me do it!) and we can miss seeing God work through times of trial. The other error is to become complacent, to forget that the battle is there. This can leave us unprepared and open to attack. These are the times when I find myself depressed over remembering failures from my past or anxious about unknown problems in the future. I have to scramble to find my Helmet of Salvation and remember that Christ paid for those failures, too, and that He has given me the victory. I have to plunge my shield of faith in the Living Water and hide in the certainty that God is in control now and in the days to come. How much easier the battle would be if I were always fully prepared. The story of Elisha reminds me that the battle is real and that I am not alone.
Saturday, May 22, 2010
- Movement challenge may be described as spastic (muscles that cannot relax), athetoid (involuntary movement of a muscle, also known as dyskinesia), hypotonic (lacking good muscle tone), or ataxia (poor balance and coordination).
- The area of the body involved may be hemiplegia (one side of the body), diplegia (legs), or quadriplegia (all four limbs).
- For degree of impairment mild, moderate, and severe are generally used, but these are highly subjective and not easily measured.
Traditinally treatment for CP involves multiple hours of physical therapy and occupational therapy, braces to compensate for muscle imbalance, mechanical aids, and speech therapy. As with most disablities, early intervention is key to overcoming challenges and learning new ways to meet difficult situations. Medications may be prescribed to control seizures and muscle spasms. More cutting edge therapies include neural stem cell therapy, hyperbaric oxygen therapy and botox therapy.
I have earlier shared the story of Caitlin who, along with her parents, is near the top of my hero list. There is an article associated with the slideshow that gives more context for the story. Caitlin is one of approximately 9% of children affected by CP due to complications at birth, and one of the sweetest, most joyful kids I know.
You can read more hero stories here.
Resources I consulted in preparing this post:
Cerebral Palsy Program/Guide (Please note that this site is addressed to Doctors and presents information in a very clinical voice which may be uncomfortable for some readers.)
cerebralpalsy.org (written for parents)
Wednesday, May 19, 2010
John Jeremy Colton was a gift to us when our oldest daughter was a baby. It has recently resurfaced as a bedtime favorite for all of our kids. I like that the story is told in rhyme. As a big Dr. Seuss fan I am always amazed when an author is able to pull this off with ease. Also it is a concept that is challenging to our daughter's pragmatic language skills, so it is probably good to read as many rhyming stories as we can to her. I also love all of the color and some of the zany-ness of the illustrations. It certainly brings home the message that the main character (John Jeremy Colton) is "one of a kind". The only thing I don't like is that the text of the story is incorporated into the zany illustrations to the degree that it is sometimes distracting. For children who are struggling to learn to read this might be off-putting. Even for the parent reading aloud it may be easy to get the story mixed up a bit. Meanwhile, the story is a true gem. John Jeremy Colton simply does not fit in with his environment nor with his peers. He likes bright colors, strange foods, odd dress, and rambunctious children. His strong and lively spirit begins to fade as he is excluded from society, but in the midst of tragedy he proves hero to those who shunned him most. Soon everyone around him decides to let their own personality parade into view. I think the lessons of this story are good both for those who are feeling they don't belong, and those who need to learn to appreciate individual differences. You just never know what a hero might look like, or where they might live.
Sunday, May 16, 2010
1. Back when the Olympics were on we added local channels to our satellite TV service and started seeing ads for NBC's new series "Parenthood." Then I read a post by one of my local heroes, Laura Shumaker, and learned that there is a character in the show who has Asperger's Syndrome. I've watched several episodes now, and aside from my dismay at the amoral direction of the character's choices and values, I think they have done a good job presenting the dilemmas of a family facing a new diagnosis of their child. Too bad we had to cancel the local channels again. I haven't decided if I enjoy it enough to watch it online here.
2. For more special needs "television" check out Exceptional Family TV. These are not actors, but real individuals trying to tell the world their special needs family story both for purposes of advocacy and to encourage others who are walking the same road. Thanks to Bird on the Street for passing along the information.
3. Lauren over at Hopeful Parents had some good insights into how to help your child learn skills that will help them be more independent as they transition to adulthood...it apparently happens way too fast.
4. My blogging role model, Jamie, over at Steady Days, shared some thoughts about how she copes during hard times with her child. I know I'll be looking back to this post next time we hit troubled waters...really great ideas.
5. Lastly, I about fell off my chair when I saw the title of this piece. Prevent Autism? Really?? Have a Healthy Baby! (Guaranteed?). Last I checked (which is pretty often these days) there is no KNOWN cause of autism (aside from some genetic pre-disposition, which I'm pretty sure one cannot control)...therefore it seems to me it would be pretty hard to PREVENT it, much less GUARANTEE people a healthy baby. I did watch the video. There isn't anything necessarily wrong with any of the advice this woman gives. Of course people should avoid toxins when they're pregnant for multiple reasons. There is, however, a sense that if you have a child with autism and you somehow missed one of these steps (like having all your old metal fillings removed) well, there you go. All I can say is UGH.
Thursday, May 13, 2010
A representative conversation might be:
"Why does it rain?"
"There is too much water in the clouds, so they let some of it fall back to
"Why is there too much water in the clouds?"
"Because they have gathered up a lot of water from the sky."
"Why is there water in the sky?"
"Let's go ask your Father!" (or look it up; or I don't know; or time to
finish your snack, dear...)
The questions all nest neatly inside each other until the parent is left with an unanswerable question and gives up in despair. I must note here that having been raised by a father with a Ph.D. in physics it was hard to get to that point with him...he usually did know the answer and often it was me who gave up the game of the endless whys.
I remember sitting in a circle with other preschool parents at an education meeting and listening to them bemoan the endless string of cause and effect conversations. At the time I could not relate. My daughter, though almost a year older than some of her classmates, had not yet met this developmental milestone. In fact, I thought to myself, "I don't recall her ever asking me any questions..." This was in the period of time when we knew that she had significant language delays, but before we knew as much of the story as we know now. That was more than two years ago. I'm "pleased" to report that we are now very much IN that milestone. A sample of the why questions I hear each day:
- "Why do you not want to crash into the car in front of you?"
- "Why do some people not like gymnastics?"
- "Why did you use the laminating machine instead of laminating paper?"
- "Why is this a skittle instead of an m&m?"
"Why do you...why do some people...why did you use the...why is this a
skittle instead of an m&m?"
Mommy attempts to frame a response that continues the conversation but
answers her question...
Or sometimes the conversation jumps randomly from one why question to another with no apparent connection among the topics...except that she is leading a conversation as best as she knows how.
I am learning to give answers that help her stay on topic, and when that fails, I'm learning to understand what's going on and play along, just being a willing conversation partner even though it's driving me crazy. I remember back at that preschool meeting thinking, "Oh, if only we could get there I will never complain about it." So I'm trying really hard not to complain. Actually I figure this is just preparation for when our twins should enter this phase in several months here. Maybe they'll all three be peppering me with "Why..." and wow...can I come live at your house then?
Monday, May 10, 2010
1) I need help! As the one who usually does what little housework gets done around here I appreciate all the help I can get, even if it is from a two year old.
2) Housework teaches useful skills. I didn't appreciate how important daily household tasks were until I was well on my way to adulthood. As a result I've rarely felt like I have a very good grip on managing our home. I would like to change that pattern with my kids. I want them to know what is involved in maintaining a clean and organized house, or at least see the importance of it in my flailing attempts.
3) Self-regulation is key. We have seen how many times, when she wants to "do a job" it is very regulating for our daughter. In many enivironments, school, Daisy troop, at home, and at church, giving her a meaningful task to focus on helps her know her role and maintain excellent behavior. It also gives her a great sense of self-esteem, "Wow, look what I did, Mom!"
That last point actually holds the key to how we developed our new chore system. In our previous attempt, our daughter earned "stars" by completing certain tasks and the stars could be redeemed for larger incentives like time with Daddy or a trip to the yogurt stand. She was the focus, the rewards were external, and she had the same tasks every day. The problem was, even with a variety of external rewards she got "bored" with the tasks, and eventually began to resist doing them. No amount of stars was worth the effort to her. However, we kept hearing about how she was going to be "line leader" or "caboose" or "weather" at school the next day and I realized that she was never bored with her jobs at school. I approached her teacher (wonderful person!) and asked to see her system for classroom jobs. She has a pocket chart with about a dozen jobs and the children simply rotate through who does each job. There are more children than there are jobs, so often the children have a day off. The key seemed to be that the job rotated frequently so that the children are not bored with the tasks. Everyone participates. The rewards are natural (praise from the teacher for a job well done) and internal ("Look what I did!"). I set about copying the system for use at home (see above), and so far I am pleased with the results.
Our family jobs are: bringing in the mail, helping with laundry, taking out the mulch, helping with dishes, picking up toys, setting the table and making beds. Everyone has one job each day until the reach the bottom of the chart where they get a day off. I can tell you that my daughter likes the new system because she has added to it in a very positive way by creating the job "bug helper" at the bottom of the chart. During the Spring and Summer she enjoys catching bugs and keeping them indoors in various bug houses. The bug helper gets to give food and water to the current bug menagerie and/or release them outdoors if they've been kept indoors as long as we are comfortable with. When she adopts a system she loves to put her own special twist on it, and this is it.
Pitfalls so far:
- No system is perfect, and this is no exception. I immediately wished I had made my chart in order that these jobs usually occur during the day. I added numbers in the margin, but it would've been better in the other order.
- Daddy often forgets whose turn it is to get the mail and will pick it up on his way in. Often this is fine, but if it is the oldest's turn she can be quite upset that he took over her job.
- Because this chart is kept at eye-level for my daughter it is within arms reach of her younger siblings. They are learning to mostly ignore it, but some pieces go missing once in a while (the Mommy tag is currently AWOL) and sometimes they rearrange things. This will fade with time.
- It still falls to me (mostly) to make sure the jobs happen and to support especially the younger kids as they do their work. I hope as we continue to develop a good routine that this will be less and less true.
- There is still some resistance to certain jobs. Putting away clothes, though the first job our daughter expressed interest in doing, can still be a battleground. I'm working out the best approach to dealing with this. One night when she had refused to do her job I told her she would just keep that job the next day. She just re-upped the resistance the next day, so then I got tough and said she would have to do it without arguing or go to bed early. (This was right before bedtime, so it was an immediate consequence.) After she had successfully finished with a good attitude we had a conversation about how sometimes we have to do work that we don't like. I even admitted that I have jobs I don't like, but I still have to do them. Ideas for good natural consequences when jobs aren't done or are resisted would be most appreciated. Just leave a comment below!
Friday, May 7, 2010
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.
Tuesday, May 4, 2010
This is the fifth of eight posts based on the Bible Study Guide "Angels" by Douglas Connelly, A LifeGuide Bible Study. Today's study discusses three Biblical examples of angels giving specific directions to godly men who obeyed and played an important role in God's plan. I must say I've never had the privilege of receiving specific instructions from an angel. This study makes it clear that any message we might receive from an angel should line up with the guidance of the Holy Spirit and scripture. As these men encountered angels they were all at key tipping points of history and God was growing their own faith as much as He was achieving His own purposes.
I will discuss the stories in the order they appear in the New Testament:
1) Joseph, betrothed and then husband to Mary, Jesus' Mother - Angels appeared to him three times. The first time they told him he should take Mary as His wife rather than divorcing her and putting her away. The second time they told him to take Mary and Jesus to Egypt because Herod was seeking to kill Jesus. The third time they told him it was safe to return to Israel. All of these messages provided for safety and security for Jesus as He was growing up. In each message the angel knows information that Joseph could not have known on his own. See Matthew 1:20-21, 2:13,19-20.
2) Philip was visited by an angel and told to go to a certain road. Philip obeyed and when he arrive the Holy Spirit prompted him to approach an Ethiopian eunuch who was studying the scroll of Isaiah, a passage that was a particularly powerful prophecy of Jesus. Philip lead the man to become a follower of Jesus, and even baptizes him. This is the beginning of the early disciples realizing that Jesus came for everyone; Jew, Gentile, slave, free, etc. (Acts 8:26-40)
3) Cornelius sees and angel who tells him to go find a guy named Simon, nicknamed Peter, who lives in Joppa with Simon the tanner. Cornelius sends three men to find Peter. Meanwhile Peter has a vision in which God instructs him to eat "unclean foods" and Peter refuses, good Jewish man that he was. Three times God gives him this same message in a vision (maybe because there were three men?) After his vision, Peter goes with them to meet Cornelius, he preaches the gospel and all of Cornelius' family members become Jesus followers. (Acts 10)
Philip and Peter were probably fairly content staying in their own culture and sharing that Jesus is the Messiah, but God had other plans. He wanted everyone to hear the gospel. Joseph was desperately trying to choose between two difficult paths. In each story it is clear that the angels simply provide specific directions for those who need it, and that their message must work in conjunction with the Holy Spirit, who is always with us to help us understand what God wants us to do. God had set up appointments, escape routes, and open hearts. These men simply obeyed. Not only do we benefit from their obedience by following their example, but also our own path to become followers of Jesus was made possible.
Saturday, May 1, 2010
Mr. Martinez has recently published a book about his son, Brandon, who was diagnosed with Tourette Syndrome at age 7. I have not read the book (yet) but I did read a short excerpt posted on his website. This brief look at Brandon's struggles definitely made me want to know more...especially with the tease of knowing that "Born to Play" is the story of how Brandon eventually is chosen as the seventh round draft pick for the Dodgers (you know, professional baseball!) I'm just imagining the various hurdles, barriers, social pitfalls and physical exhaustion that had to be overcome to get to that place.
Tourette Syndrome (TS) is a neurological disorder that manifests as involuntary movements and vocalizations (called tics) often occurring at the same time. Generally these tics are evident before age 18 and for a formal diagnosis must be present for more than a year. Infrequently the vocalizations can include obscene or socially inappropriate speech - this is widely publicized but does not actually occur very often. I was interested to learn that echolalia, often associated with autism spectrum disorders, can also be present in TS. Echolalia is a pattern of speech where the affected person repeats their own words or others' words. Many people affected by TS also struggle with learning disabilities, ADD/ADHD, Obsessive Compulsive Disorder, anxiety and depression. The educational and social challenges associated with TS and these co-morbid conditions can be devastating. TS was first described in 1885 by a french physician by the name of Georges Gilles de la Tourette. The direct cause of TS is not known. There is a clear genetic component as often several family members are affected by tic disorders. Interestingly, again like autism, boys are 3-4 times more affected than girls. For mild cases of TS, treatment consists of support, education and "watching." Depending on the severity of these conditions, medications are used to bring the tics under control, such as:
- clonidine (Catapres)
- guanfacine (Tenex)
- risperidone (Risperdal)
- haloperidol (Haldol)