Sunday Digest 42

I've been exploring the new social media space of Pinterest. I've been enjoying "pinning" things that I find all over the internet that might be useful at some time in the future - recipes to try, books to read, pillows to sew (someday). Sunday Digests are like my own more public Pinterest board. I find other blog articles, news pieces, stories and information that I think is interesting, helpful or inspirational and share it here with you. I hope you will enjoy these links as much as I have...

1) Lisa Leonard - jewelry designer, photographer, blogger, and special needs mom shares the story of her son's birth, and the amazing lesson from Psalm 139 that he teaches her. We are all fearfully and wonderfully made. Make sure to read the comments, too.

2) There have been several "What it's Like" posts lately from parents of children with special needs. Maybe there's something in the air. The first one I read was from a mom. She cited her inspiration which was an article written by a dad. I threw in my own three cents on 5 Minutes for Special Needs, and Tammy posted her thoughts at Praying for Parker. Truth is each parent child situation is unique...

3) And for an even more inside view, check out what the first day of school (college) is like for Lisa over at Reports from a Resident Alien. I love reading her posts because I feel like I'm peaking into the child's future (maybe)...

4) Lisa at Hopeful Parents shared about the challenge of filling a prescription for Ritalin for her son who has severe ADHD. Makes me wonder if government run health care is really such a good idea?? It reminded me of a play that was showing at our local theater. Distracted is the story of a mom struggling to help her son with ADHD. I did not get to see the play, but attended a free talk given by a local pediatrician after one of the shows. This program guide is filled with lots of interesting information about the play and ADHD.

I think that's it for this round of "pinning". Enjoy. When you visit these links please make sure to tell them you heard about them through The Simple Life.

Sunday Digest 24

Two trips in one month, and I'm just throwing this together from my readings in between. No theme, no particular rhyme or reason, but all good stuff. Check it out.
1) I liked this post over on Hopeful Parents from Dr. Linda Edelstein. It's about how we handle and sometimes try to avoid "information." We all know the person who doesn't want to go to the doctor because they would rather not know...perhaps that person is you. I have been that person before a few times and I must say in the end it has always been better to know. When someone first hinted to us that our daughter might have autism I fought that diagnosis in my head every day for about four months, but really once we knew we were able to start learning how to work with her more effectively. Two and a half years later I can say that I'm now glad I know.

2) This sort of relates to appropriate terminology when talking about or writing about individuals with special needs. I've had several discussions lately with people about why children with autism should not be compared with "normal" peers. One of my favorite blogs to read of late is Reports from a Resident Alien, written by a young woman with high functioning autism. Here is her take on "normalcy" as it relates to the spectrum. Bottom line we all like to categorize individuals into neat little boxes, but honestly we're all valuable regardless of which handy labels you want to put around our necks. Let's focus on that.

3) And more about the intrinsic value of life from In(courage).

4) I found this article on bullying from the IAN project via Our Journey Thru Autism. As my daughter gets older I worry more about bullying form both sides of the problem. My daughter's lack of self-regulation and her history of aggressive behaviors is a perfect set-up for being classified as a bully if people don't understand what's driving her. Her lack of social skills and odd behaviors may set her up as the target of a bully, too. I'm "reading ahead" to try to understand this large topic and will probably post some things on this soon.

5) I've heard this song by Amy Grant several times recently. It is always a good reminder to me that every moment can be worship if my heart is in tune with His Spirit as I move through my day. Even if I am a mess...He loves it when I come into His presence. Will you join me there?

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.

Book Review - Crow Boy

It's amazing what you can find when you take two two-year-olds to the public library and let them loose in the children's section. The other day when we tried this experiment Crow Boy by Taro Yashima was one of the first books that one of my toddlers handed to me before dashing off to pull another volume off the shelf. I noticed it was a "high quality" find - the winner of a Caldecott Honor Book award in 1958. As I thumbed through the pages, in between eye-balling where my little people were off to next, I realized that this was a story I needed to read to my older daughter and for myself, so I promptly checked it out.


Mr. Yashima takes us back to his childhood in semi-rural Japan and introduces us to a young boy, "Chibi," who is different from the other children. Chibi is afraid of the teacher and the other children. He prefers to be alone, to look at and hold bugs. He passes his time by studying the ceiling or a patch of cloth on his neighbor's shirt. He sometimes looks at the world through crossed-eyes to avoid seeing things he doesn't want to see. It all sounds very ASD to me. The other children do not understand him, and call him mean names. They even call him Chibi because it means "tiny boy". In the sixth grade a new teacher, Mr. Isobe spends extra time getting to know Chibi and eventually Mr. Isobe finds a way to show the school community who Chibi really is. He encourages Chibi to enter the school talent show where he demonstrates his knowledge of bird song, in particular various crow calls. (My twins, by the way love these pages as I try various crow calls.) Mr. Isobe then also explains that Chibi lives in a distant village and that he has travelled by foot every day beginning at dawn to arrive at school, journeying back home to arrive at sunset, and he has maintained a perfect attendance record for six grades in spite of being misunderstood and mistreated by his peers and elders. Chibi gains new respect from the school community and his nickname is changed to Crow Boy, which he seems to like.

The story itself is inspiring and potentially instructional to children and adults of the value in every human life, and the strength of the human spirit. The illustrations (drawn by Mr. Yashima and the reason it was considered for a Caldecott award in 1956) are lovely. To me it seems that Mr. Yashima was trying to show the pictures as if we are looking through Chibi's eyes. The only thing I do not like about the book is that it specifically states the cruel names that were directed at Chibi by the other children. When reading to my daughter it was easy enough to gloss over this by just saying "the children called Chibi mean names" because she doesn't read yet. It's important to me not to plant any such derogatory terms in her vocabulary as we try to encourage the practice of using kind words at all times. She will eventually learn these on her own, but I don't want to be the one who teaches them to her in any format. For a child who can already read seeing these names might be disturbing to parents of like mind.

I believe Mr. Yashima was far ahead of his time in encouraging people to take the time to understand those around us who are different.

Health Care Reform

If you pay any attention to politics and current news items you have heard all of the debate that is going on about health care reform in the U.S. I do not pretend to be an expert in this, nor do I claim to know enough to tell you what you should do or think about it. I am listening and reading a lot. In general I am politically conservative, and there are very few politicians that I trust to be looking out for my best interests, even though that is what we elect them to do. I guess you could call me a conservative cynic. Although I know there are a lot of things that aren't working well in the way we manage the financial side of health care in our country, I have big doubts that the government increasing its involvement at any level will be beneficial. Given the current mode of government, however, I think that is what we're headed for. Just think about the government agencies you already have to deal with on a regular basis and how hard it is to get what you need from them when you need it. Still, we know about big hospital bills (our family frequented a local hospital for about 9 weeks around the birth of our twins, 5 weeks for me, one week off and then 3 weeks for the two babies); crazy insurance rules, applications, the pros and cons of COBRA, and pre-existing conditions...and this is where today's action post comes in.

Children with special needs will undoubtedly be affected by whatever decisions our elected officials make about health care reform. As a parent are you concerned? Do you know what is happening? There are steps you can take to get involved and make your voice heard. No matter what your political stance, I encourage you to take these actions at minimum:

1. Read, listen, or watch as much as you can in order to learn as much as you can about the health care reforms that are being considered by our elected officials. I've linked to two differing views below. Consider these a starting point for your investigations.

• "The sick, special needs patients, and seniors – those most at risk when the government involves itself in these tough decisions – deserve better. Like it or not, once government-run health care is a fait accompli, government rationing becomes the logical endpoint." getbetterhealth.com

• "The status quo that is 50 million Americans not having health insurance, a system that has administrative waste and as a result drives up premiums so that it is unaffordable for many patients – that is just not acceptable." huffingtonpost.com

2. Make some informed decisions about where you stand on the issues.
3. Contact your elected representatives and let them know your opinion.

There are also several specific actions that you can take if you find that the messages of these petitions and e-mails aligns with your own views. I'm sure there are others, these are just some I've come across in my own search for information.

• Send a "fax" to Speaker of the House, Nancy Pelosi, asking her to watch the AutismVotes advertisement and to support health care reform that ends insurance discrimination against autism. ***Update: 7/29/09 - AutismVotes asked everyone to stop contacting Speaker Pelosi because her office entered "productive discussions" on this issue. I'll keep you posted if I hear any more on this. ***Update: 11/27/09 - The House version of the Health Care Reform legislation did include provisions to end insurance discrimination against autism. You can read more here. This shows that with enough voices concentrated on one objective we really can be heard!
• Sign a petition to ask Michelle Obama to sit down with two parents of autistic children and two self-advocating autistic adults to discuss the formation of an Autism Corps.
• Watch this video about the effects of the current health care reform proposal on the abortion issue. CitizenLink can help you contact your representative.

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