Sunday Digest 44...

...which I'm writing on Wednesday. Yeah...tough week. Actually I played a lot last weekend and I'm kind of paying for it now. Anyway - here are the coolest, most inspirational, most informative, most heart-tugging posts that I've found in my Internet roving over the last few weeks. Please enjoy and be sure to tell them you found them through The Simple Life.

1) This piece on waves from kidz pretty much sums up where I've been for the last four years or so. I'm learning to find treasures amid the surf.

2) As usual, Varda at Squashed Bologna nails it again with her piece about words. Varda is responding to the story about the father who planted a microphone on his son to find out what was happening to him during school. He discovered that his son's instructional staff were being verbally abusive to the children in his special needs classroom - children who often do not have the verbal abilities to tell their parents that something very wrong is happening. It's every special needs parent's worst nightmare. Yes, words are powerful.

3) I love reading Laura Shumaker's blog. Her book A Regular Guy was particularly meaningful to me because we live in the same area and I could relate to so much of her story from her son's early days. I also love reading about how Matthew is doing now as an adult with autism. On the one hand it's hard to hear that he is still struggling. On the other hand it's kind of encouraging to know that this is a long process and it's okay that we haven't figured everything out already.

4) Autism & Oughtisms post about words and rhetoric is also important, and kind of what I was trying to say here, but as usual said with more precision by A&O.

5) There have been a lot of mommy wars out there lately: tiger moms, working moms, stay at home moms, attachment parenting moms, blah blah blah. Katy at Bird on the Street says she is "Just a Mom" and that's plenty. I agree.

Trisomy 18

I'm continuing my series on Trisomy disorders. You can read the overview post here. Briefly, trisomy occurs when at conception an extra copy of one chromosome is transferred from the parents to their offspring. There are also forms of mosaic trisomy which occur during cell division, resulting in some cells having an extra chromosome and some not. Our chromosomes usually occur as pairs and are numbered from the largest chromosome (with the most genetic material) to the smallest, and Trisomy 18 refers to an extra copy of chromosome 18. Trisomy 18 has been in the news a bit more often recently because the former Republican Presidential Candidate Rick Santorum's daughter, Bella, has this disorder. She is three years old.

Trisomy 18 (also known as Edwards Syndrome) is the second most common form of trisomy, and occurs in 1 in every 3,000 live births. Because of the physical complications associated with Trisomy 18, many affected babies die before or shortly after birth.Affected males have a higher mortality rate than females. Most children (90%) die before the age of two months. However, some (mostly females) can live into their twenties and beyond, though they require assistance with daily living.

Trisomy 18 can be diagnosed prenatally. There are two levels of testing. The AFP or triple screen is a blood test that indicates statistical risk of Trisomy 18 (or other disorders) being present in a developing baby. This is not a specific diagnosis, but a "screening" test that may suggest further tests are advisable. Only about 11% of those with a "high risk" AFP result will go on to a confirmed diagnosis. Ultrasound is another method for screening. It may indicate physical differences in the baby, but the cause of those differences would be indeterminate. CVS (samples the structures that connect the pregnancy sac to the uterus) and amniocentesis (samples the amniotic fluid surrounding the developing baby) examine genetic material and give a more definitive diagnosis. There is a risk of miscarriage from these procedures. Following pre-natal diagnosis it's important to discuss the results with a genetic counselor who can explain what the results mean. I think it's also important to find resources and parents who have already lived with this disorder and know what you may be feeling and experiencing.

Each individual with Trisomy 18 may have a different combination of medical and developmental challenges. As with other forms of trisomy, in addition to the full Edwards Syndrome there is Partial Trisomy 18 (where only a portion of the chromosome has an extra copy) and Mosaic Trisomy 18 (where not all of the cells contain the extra copy) but these forms are less common, and each has similar potential challenges, including:

• Heart defects - a hole between the upper or lower chambers, or narrow aorta.
• Kidney problems
• A portion of the intestinal tract may be outside the stomach
• The esophagus may not connect to the stomach
• Clenched hands
• Pocket of fluid on the brain
• Rocker bottom feet
• Delayed growth
• Severe developmental delays
• Umbilical or inguinal hernia

Some of these medical challenges can be corrected with surgery, others may cause long-term issues such as congestive heart failure, and susceptibility to pneumonia.


For more information:
     Visit Susan's blog (buddzoo.com, where she shares her story of caring for her 3 year old daughter who has Trisomy 18. Susan also moderates a facebook group for families of Trisomy 18. (see comments below)
     Visit the Trisomy 18 Foundation here.
      Read stories from parents and family here.

Sunday Digest 43

Time to share the best of the things I've found while floating through cyber-space the last few weeks. I hope you'll visit and enjoy the links below and let them know you found them through The Simple Life:

1) One of my best new finds is Just a Lil Blog by Jim. It is great to get a dad's perspective on special needs parenting. His post People, Not Data really resonated with me and added to what was already brewing when I decided to write my own post "Making it Good" over at 5 Minutes for Special Needs.

2) Varda at The Squashed Bologna always has something to speak to me - several recent posts nailed me actually - but this one, which was a rerun from Hopeful Parents is one of my favorites. We need to start planning for the future of all of these young people now identified with autism or related disorders. The world is going to have to change big time!

3) I LOVED this take on Trisomy 21 by Tammy at Praying for Parker. So many of these "disorders" are naturally occurring conditions that, while challenging, have always been a part of the human condition.When will we accept this?

4) And, while we're on the subject of Down Syndrome, please listen to the testimony of this young man who reminds us that even though we're all different, we're all the same. We all need God. Hear how God used him to reach out to special needs children and their parents and teachers.

5) No matter what you're facing this week, it's good to remember that we each meet the future at the rate of 60 minutes per hour. Some things (the tedium of laundry and dishes) we wish could go by faster, but others, like the wonder of a child exploring the world around them we should stop and enjoy a little more. Tsh Oxenreider shared these thoughts at (In)Courage.

Book Review - Being Me

Being Me is another great public library find. I am not sure which child decided that we needed to bring this little gem home, but I'm glad it ended up in our library pile. At first I thought it was just a cute book about various personality traits of this spunky little girl with poof ball hair, which it is, but it is more. This is a little girl that almost any child can relate to. She likes dressing up, painting, doing cartwheels, and eating chocolate chip cookies. She has to do chores. When she's not at school she spends time with her baby sister and her parents. She seems like the kind of girl you would want for a friend, and she is.

The difference is so subtle, that I almost didn't catch it the first time we read the book. Stated matter-of-factly among all of the other attributes, the little girl informs us that she can't hear. In fact, it seems almost like a benefit as the page where she proclaims this bit of news is one of those "so much noise you're head will split" kind of pictures. Oh, the picture itself is quiet, but what it depicts is a blaring siren, a barking dog, a wailing baby sister and a jet plane soaring overhead. The parents are clearly out of sorts with all of the noise around them (maybe especially the baby) but the little girl is just as happy as can be.

She goes on to explain that she talks with her hands - a concept my children are familiar with thanks to Signing Time. These two differences are tied up with a neat conclusion that we are all different, even though there are a lot of things we have in common, too. Differences are celebrated - I love you, you love me. That's it. Short, sweet, simple. Perfect.

This is exactly the sort of thing we've been talking about a lot at our house recently. Helping the child understand how she is different from her peers has been an on-going conversation. I know it is sticking because she keeps asking me questions about autism. Helping her understand that her differences are just a part of her and not something to be ashamed of is important to me. She is loved, and while the things that make us the same help us to get along and get things done, differences are important, too.

Some features that I have grown to love about this book are the illustrations, which pack a lot of meaning into the simple prose. To me the characters are all fairly ambiguous ethnically, which adds to the universal appeal of the children in the story. The text is simple enough that my four-year-olds have enjoyed reading the story again and again. Hopefully we can fit in a few more readings before we take it back to the library.

Trisomy 13 - Patau Syndrome

I'm continuing my look at Trisomy disorders by profiling Patau Syndrome, Trisomy 13. Though discovered in 1657, the genetic cause was determined by Dr. Klaus Patau in 1960. As with all instances of trisomy, Patau Syndrome occurs when three copies of chromosome 13 are in some or all of an individual's cells. There are three forms of Trisomy 13:

1. Partial trisomy involves the presence of part of an extra copy of chromosome 13 in the cells.
2. Trisomy 13 mosaicism occurs when some of the cells have an extra chromosome 13.
3. Trisomy 13 has a full extra copy of chromosome 13 in all of the cells.

In some rare cases the extra genetic material may translocate and attach to a different chromosome. Trisomy 13 is fairly uncommon, occurring in approximately 1 in 10,000-21,700 newborns. Due to the severity of genetic damage (remember the lower the number of the chromosome the more genetic information it contains) the condition sometimes results in miscarriage or stillbirth (around 8% of prenatal diagnoses). Further, 80% of babies born with Trisomy 13 will not survive beyond their first year. However, those who do survive birth and early infancy can live to adulthood. Children with partial or mosaic Patau have an even more hopeful outlook. Therefore it saddens me to know that up to 64% of babies diagnosed prenatally with Trisomy 13 are eliminated by elective abortion.

Each child with Trisomy 13 will have different needs depending on what symptoms are evident. Some common issues include:

• Cleft lip or palate
• Close set eyes - may even fuse into one structure
• Extra fingers or toes
• Seizures
• Limb abnormalities
• Small head
• Small lower jaw
• Congenital heart defects - placement toward right side of chest, septal or ductal defects
• Holoprosencephaly - the forebrain doesn't divide properly

Often these physical challenges are detected first by ultrasound. MRI or CT scans may also be used. Chromosome studies are used to specify the type (Patau) and sub-type (partial, mosaic, or full) of Trisomy.

Caring for an infant with Trisomy 13 often involves addressing breathing issues like apnea, feeding problems, heart failure, seizures, and challenges with seeing and hearing. It is essential for families to find support as they walk through caring for a child with Trisomy 13. One well-known organization to contact is SOFT. Another is Hope for Trisomy 13 and 18.

How fitting that March is Trisomy Awareness month!

Sunday Digest 41

I think I'm slowly getting back into the swing of posting more frequently here (and keeping up at 5 Minutes, too...) Part of that is keeping up with following a lot of other blogs to keep the inspiration flowing. Here are some of the links I've come across in my perusing...

1) I wrote a post on Trisomy 9  about a month ago, and had the privilege of having a Trisomy 9 Mom stop by and comment on it. Turns out that Erin has her own blog where she writes about all the challenges they face. Here is a link to the story of her son's diagnosis, be sure to check out other posts, too.

2) OH...how I relate to Autism & Oughtisms post about the endless questions of childhood. Oh yes, we've been there, and still go there every once in a while. I've even blogged about it. "Why don't you crash into the car in front of you, Mommy?" was the child's favorite question for about three months and every time we were driving in the mini-van she would ask. Sadly we saw a bad car accident on the side of the road one day on the way home, and when I told her that's what happens when you crash, the question turned into "What happens to the car after it's crashed?" and I answered that one every time we saw a tow truck hauling a smashed up vehicle. Now I am asked to recall the finest details of my own childhood...and "I don't remember" is not a satisfactory answer. And yet, when I consider how hard she has worked to get her language to the level of asking questions...I swallow my impatience and try hard to answer in a way that will keep the conversation going.

3) Another been there, done that, moment from Bird on the Street - who has an older child with special needs, and twins (just like me)...but she's pregnant with baby number four, and we're not going there...hat's off to you, Katy! Anyway Katy tells the story of taking her three children to the pediatrician. Those of you without kids are thinking "What's hard about that?" and those with children are thinking "What was she thinking?" I actually do this all the time because I prefer the short term chaos to having three separate appointments where I have to find child care for one or two other children; but it ain't fun...let me tell you. Or let Katy tell you...

4) Had to check in with Praying for Parker. All of Tammy's posts teach me a lot. This one was especially touching to see Parker enjoying his favorite books with his Grandma and see the special bond they have. Sweet.

5) We are big Signing Time fans around here, although I need to expand our library of DVDs. We have used simple signs to help enforce rules, in particular, around our house. It helps me stay calm, for some reason, and it helps the kids pay a little extra attention. Rachel has been posting about a trip to Ghana where she helped a school for deaf children learn to use sign language in their curriculum. Reading these stories is a great reminder to count our blessings, and also to reach out to bless others...and also to keep exploring sign language with my kids.

That's it for this round...I hope you enjoy the links as much as I did. Please tell them you heard about them through The Simple Life.

Book Review - Slime & All

My friend Janet Ann Collins is celebrating the release of her fourth children's book "Slime & All" this week. She was kind enough to send me a preview copy by PDF so I could review it. It is now available on Amazon. The story begins with a sad worm by the name of Lump. He is tired of other animals running away from him, so he decides to run away instead. Lump is rather large, and slimy, but manages to stow away on a big truck. Fortunately for him he meets an educated little boy who knows that worms don't hurt us. Jake takes him to a park where he can get wet all over, and eat some dirt (yum) but better than that, Jake introduces him to a lot of other kids who decide Lump is "cool."

I was excited to review this book because it fits right in with my current theme of encouraging peer-advocacy among children. Everyone has their "slime" if you will - something that makes it challenging to befriend them. It would be easier in some respects to be like the farm animals and just run away every time you meet someone who is different from you, except that you'd spend a good bit of your time running away. How much better to be educated a little, like Jake, and to take the time to understand someone, to meet their needs, and help others understand that they're pretty okay. This is advocacy at its best, and its most personal. We can all learn a lot from Jake.

The book is written as a short and easy chapter book, perfect for beginning or struggling readers. The text is simple and straightforward. It is not at all preachy in that "there's a moral here, kid" kind of way. Jake and Lump do their own work of teaching the reader to be kind. Each chapter is paired with a fun full color illustration by Alexander Morris. You've never seen a cuter worm, even if he is enormous. I'm guessing the farmer misses Lump a lot - imagine the soil he could turn out!

So next time you see a worm, consider making a new friend...slime and all.

Trisomy 9

Several months ago I started a series about Trisomy genetic disorders. I'm just getting back to that series after taking a brief break. You may want to refresh your memory on what Trisomy is and how it occurs. I've also written about Trisomy 8.

There are three forms of Trisomy 9:

1. Full Trisomy 9 is the most severe form in which every cell has three copies of chromosome 9. In most cases the developing embryo is not viable and the pregnancy will end in the first trimester by miscarriage. Some babies with full Trisomy 9 survive until birth, but only live for a short period of time.
2. Partial Trisomy 9 involves an extra portion of chromosome 9 is included in each cell. You can get an idea of what that might look like here (scroll down to diagnosis). Life expectancy with this form of Trisomy 9 varies widely. This form is generally more rare than full and mosaic forms.
3. Similar to Trisomy 8, Trisomy 9 often occurs in a mosaic form in which some, but not all, of an individual's cells have three copies of chromosome 9. Depending on the severity of medical challenges the life span of individuals with Mosaic Trisomy 9 can be shortened dramatically.

 Statistically, individuals with Trisomy 9 share several characteristics including medical issues, physical challenges, and behavioral traits. Each affected individual is unique and should not be "expected" to fit a certain developmental profile, but some common challenges include: low birth weight, congenital heart defects, global developmental delays, cognitive challenges, cranio-facial differences, and low muscle tone.
For more information on Trisomy 9, check out the following links:

• a fairly personal view from one family is here
• links to several other resources are here
• a more clinical view
• break out the tissue for this video about some girl scouts reaching out to one little girl with trisomy 9 mosaic syndrome.

Sunday Digest 39 - Liebster Blog Award

[portions in italics added 1/16/12 after reading comments and following a few links...]

So one (actually two) of my few, but faithful, followers nominated me for the Liebster Blog Award. Thanks, Rose-Marie! and Autism & Oughtisms! This award honors all of us hard-working, consistent-posting, just outside the limelight bloggers. Specifically blogs with less than 200 followers. Part of the honor is passing it along to five other bloggers that haven't hit the big time - yet. So today's digest will be pointing you to a few bloggers that I follow who you should definitely check out...later on you'll be able to say, "I knew them when..."

How funny that I happen to be posting this on Golden Globe night... Envelope please...And the Liebster goes to:

1) A Wish Come Clear - OK I may be cheating. I don't know how many followers this blog has...it's actually surprising how many blogs *don't* say how many followers they have. Ah well. Caroline McGraw contacted me recently...she may do a guest post here soon if I can get my act together...and she has perspective that I need. Her brother has special needs and she now works in a community with adults with special needs. I'm just getting to know her, but I can already tell she has a lot to teach me.

2) Not for profit, but for JOY! - Everyone can use a little more joy in their life, right? Stacey and I seem to struggle with the same stuff - juggling everything that being a mom and wife means and finding time for ourselves somewhere in there too...multiplied by having a child with special needs.

3) eSpecially ben - VMI shares touching stories and artwork from her special son, Ben. I think I first found eSpecially ben through Magic Marker Monday at 5 Minutes for Special Needs. Very inspirational.

4) Delayed but not DENIED! - The name says it all, so does the verse on the blog banner, John 9:3. I think maybe I like Territory Mom's posts most because we live in total suburbia and she gives me a dose of farm life along with inspiration.

5) Janet Ann Collins/Onwords - I have met Jan IRL and she has a lot of experience that has been helpful to me. I also really enjoyed reviewing her book, Signs of Trouble. Much of her writing involves individuals with special needs, though she also touches on other subjects...all with a sense of humor and care for others.

So those are my Liebster awards...off to notify the winners. I should also note that many of these bloggers "follow me back" and I really appreciate the reciprocity. Stay strong, ladies! Here are the rules to pass along the award:

• Show you appreciate the blogger who nominated you with a thank you shout out!
• Nominate 5 other blogs, who have 200 followers or less, by leaving them a comment.
• Post the award on your blog
• Keep up with the blogs you've given the award to...

And I guess in some versions there are questions you're supposed to answer. Many people do this with great wit and wisdom, but since this is tacked on I'll be short and sweet, and maybe mildly amusing:
Favorite color - dark green and blue - someone has to balance out all the yellow my husband throws around
Favorite animal - elephants - they are so big, and so amazing
Favorite number - really? people have favorite numbers? Five I guess  - that's the date of my anniversary, my birthday, and the number of people in our family. There.
Favorite drink - since giving up sodas blueberry tea - yum - hot or iced love it.
Facebook or Twitter - both, but mostly Facebook
What is my Passion - well now that is a very interesting question that I've been thinking about a lot lately...Learning, Solving Problems, and Helping Others seems to be the theme of the day
Do I prefer giving or getting gifts - I find both ends of the gift thing to be stressful, but I guess I prefer giving because when I get I have to write thank you notes and since I don't usually get around to it that is guilt inducing.
Favorite Day - The first day of Spring. I love Spring.
Favorite Flower - to smell : Jasmine; to look at : orchids and passion flowers.

Ability Awareness - Part 2- Building Peer-Advocacy

We are continuing our series on Bullying. You can start from the beginning of the series here. This post also continues the story from Shelly, a friend of mine from our local Special Needs Parents group. When we left off, Shelly was just about to speak to her son’s 1st grade class to explain her son’s autism. To read part one, click here…then come back and continue reading…

...I had printed off four full color 8x10 photos of my son: swimming in the deep end of the pool with grandma, playing iPad games with a friend, at the arcade playing a driving game on his uncle’s lap, and standing around a fire ring roasting marshmallows with a group of friends. I held up the first photo and said, “How many of you have ever been in a swimming pool?” They all raised their hands. I explained how my son had learned to swim last year and was in the deep end in that photo. A few kids said, “Oooooooh, the deep end.” I then held up the next photo and asked, “Have any of you ever been to Lake Tahoe?” all hands went up again. I explained that this was a photo of my son and his friend playing a game on the iPad on our vacation to Tahoe. One of the kids whispered, “He has an iPad? Wow, that’s cool!” I did the same with the other photos. The affinity the kids had for my son was palpable. I said to them, “Well, many of you have done the same things that he has done and you are a lot like him in that way, but there is one way that he is different from you guys. He has something called ‘autism’.” Everyone’s faces scrunched up. I had them repeat the word. I told them that when you have autism sometimes you have a hard time making friends and you can’t always say what you want. You might do things like make loud noises or stand up in the middle of circle time and be silly when it’s really time to be quiet. I explained to them that my son was born this way and that the doctor’s have no idea why. That even though he looks just like the rest of the class his brain is a little bit different than theirs. I told them to remember that when he makes noises, or maybe if he hits himself, he isn’t doing those things to try to make others upset, but that sometimes he just can’t help it. I told them that they could help him by being patient with him and understanding. We talked about using only a few words when talking to my son, giving him a choice between two things when they’re out on the yard (want to go on the slide or the swings?). I asked them if they thought they could do that and I got a resounding “Yes!”

That night at our Parent Faculty Club meeting my son’s mainstream teacher came up to me and told me what happened after I left. She said that after our lesson that afternoon the class went up to the science lab. While the science teacher was talking to the class, my son became restless and stood up. She said that the boy next to him then stood up beside him and whispered in his ear, “Ok, it’s time to sit down now.” and then sat down with him. She said he sat there and patted my son’s arm until the lecture was over and that he remained calm the rest of the time.

Tears streamed down my face as she told me this. She said that she saw and felt an immediate difference in the children after we left the classroom that afternoon and she was so glad that I’d agreed to come. She went on to say that the kids feel a real sense of responsibility toward my son now, that he is “one of them” and to be looked out for. A week later I got an e-mail from a mom saying that my son had come up as the topic of conversation at their dinner table. Her son now knows how to interact with my son and he feels at ease about this. One little girl even approached me on recess duty saying that she’d introduced my son to two new friends on the yard. She was so proud of that fact and I thanked her profusely.

That lesson took a total of 16 minutes and yet it has had an immeasurable effect on those children and their families. I hope that anyone reading this who has special needs children of their own will be inspired to help raise awareness for their own kids in some way. I feel so blessed to have been given this opportunity and am grateful for the understanding staff at my son’s school. It’s one of the best things I could have done for my son.

Special thanks to Shelly for sharing her story, and being my first guest post here at The Simple Life. Feel free to ask questions or leave comments below.

Ability Awareness - Part 1 - Building Peer-Advocacy

As we continue our series on Bullying, I wanted to share this success story with you. This story is a great example of how to foster peer-advocacy for children with special needs. The author of this piece is Shelly, a friend of mine from our local Special Needs Parents group. Shelly is a former teacher (Kindergarten, 4th and 5th grades) and has her Masters Degree in Early Childhood Education. She is the mother of a 6.5 year old autistic first grader. Shelly devotes her time to her son and advocating for our local Special Needs community, and also enjoys sewing and quilting. I’ll be posting her story in two parts…

My son is six and a half. He is autistic, with a severe speech delay and just started first grade this fall. He is in a Special Day Class and gets mainstreamed into a general education class for a few hours of the day with a full time aide. He is not yet aware of his special needs, but his 1st grade peers are more socially savvy, so I was relieved when the phone rang during the second week of school with a surprising invitation.

Our school psychologist was calling to say that my son’s mainstream teacher had requested that he do an “ability awareness” lesson with her class regarding my son’s autism. He asked if I would like to be involved. I went silent for a second - in total disbelief - at that instant my heart was so full. I was touched that he was calling to ask me this! He explained that as a school psychologist he has been asked many times to do this and knows that some parents prefer anonymity and others like to be involved and wanted to check in with me about my comfort level. The plan was to read a story to the class to set them up for understanding about special needs: how we are all the same but that we are also different at the same time. After that I would have time to discuss my son’s specific needs. The lesson was set for September 7th. We hung up and I immediately began to think of what I’d say and do.

It was a nerve-wracking week for me. I spent a lot of time thinking about how to explain autism to 6-7 year-olds. How could I make it real to them? I would have only about ten minutes to speak and wanted to say it all without putting them to sleep. I called on the help of an autism interventionist friend of mine and my son’s former preschool teacher. They helped me work out the content and flow of what I should say.

The night before, I couldn’t sleep. It felt like the first day of school and I was a nervous wreck. I went into the classroom that afternoon with the school psychologist and an Instructional Support teacher. The teacher began her story. It was a 1992 Sesame Street book called, “We’re Different, We’re the Same” originally intended to illustrate racial harmony. It was a cute story, however, and set things up nicely for me. The psychologist segued further by talking to the students about how they are all a team in their classroom and how even though my son isn’t always in their classroom, he’s still a part of their team. He said I was there to tell the kids a bit more about my son and then turned it over to me….

Sorry to leave it here, but this is the best place (really) to break the story. Come back in a few days to read Part 2.

Defense

This is the second in a series of posts related to bullying. The series begins here...

There are a lot of ways to head off and respond to bullying. I will highlight some Defensive tactics here and Dig into these in more Detail at a later Date:

Self-Advocacy - This is the foundational attitude you ideally want your child to have. It says, "I am valuable and worthy of respect. There is no reason anyone should treat me badly." This attitude may prevent bullying simply because bullies may pick out targets who seem vulnerable. This can lead to a negative cycle. If your child is still targeted, self-advocacy will at least impel your child to seek help from others. Self-advocacy skills, like many social skills may not come naturally to children with special needs. There are resources to learn these skills, however. I'll be sharing some what I've run across in the following posts.

Peer-Advocacy - The next best defense is a group of peers that will not stand by and allow bullying to occur. Bullying persists in part because bystanders allow it to continue. There are several theories about why that happens which I'll try to follow up on in future posts. Helping your child establish a circle of friends who will stick up for them is vitally important. We'll talk about how to make that happen, too.

Supervision - This may be one of the weakest links in our culture. There simply aren't enough adult eyes per child. I have seen in our own school that even when there are several adults on the playground (at drop-off and pick-up in particular) they are distracted and not observing what the children are doing. You can't catch everything, but the more you can be present and engaged the more you will know what your child is facing and how they are reacting to it. You'll see for yourself what skills they need to learn. I have to be clear here that I'm not talking about helicopter parenting here. I think it is important to provide "just-right" support for your child. For my daughter I can now watch her with peers from a distance - reading her body language and eavesdropping, if possible, to know when I need to step in and give her some support. This is how I know that some children already regard her as "odd" and will use any opening they find to verbally outwit her and highlight her differences.

Policy - By itself, policy is ineffective, but it is still essential. Make sure you know your school's rules and what procedures they follow if bullying occurs. What definitions do they use? How are the rules enforced? What is the communication chain? What documentation do you need?

These concepts are just an outline of the various defensive strategies you need to consider if you're concerned about bullying or know that it is occurring.

Which method has been most essential for you and/or your child?

This post is linked to Jenny Matlock's Alphabe-Thursday blogfest. You can see the other creative responses to the letter D here.

New Series - Thoughts on Bullying

I am about to abandon my normal blogging schedule...you know the one I can't seem to keep up with anyway. For some time now the subject of bullying has been on my mind. I don't have to tell you that it is a favorite topic in the spin cycle. A simple google search of news articles from yesterday brought up two different cases that are getting national attention - one that resulted in the suicide of a 10-year-old girl - on the first page of the search results. President Obama is talking about it, as are several state legislatures. California recently passed two new measures related to bullying. South Dakota can't get a bill out of committee. My interest in the topic, though piqued by all of the furor du jour, is much more personal than that.

My daughter - the one who inspired the creation of this blog - is a ripe target for bullying in two forms. Her developmental differences cause her to stand out in ways that bullies may use as an excuse to target her. In addition her challenged social skills coupled with her personal desire to please and get attention from peers also make her vulnerable to being used as a bully's sidekick or groupie. "I won't be your friend unless you [insert bullying behavior] to [insert target's name]." I think I'm probably already working on borrowed time here. I know bullying can start even earlier than 2nd grade. Since she doesn't have great expressive language skills we may have already missed some minor issues, simply because she doesn't have the ability to tell us what she has experienced each day. There are many mysteries that occur between drop off and pick up at school. All efforts to observe and keep tabs on what she is experiencing point to things being okay. How long can this last?

It goes back even farther than her almost eight years, however. No, this is deeply personal. Looking back on my childhood I don't think anyone would say I was "bullied" in the strictest definition of the word. There weren't any thugs waiting to jump me on my way home after school. No one took away my lunch money or threw my homework in the mud puddle. Still, starting at grade 5, my social experience was one of isolation and constant teasing. Through circumstances pretty much beyond my control I was ostracized, called names, and made the butt of many jokes. The adults around me were either unaware of my situation or took the view that this was all a normal part of childhood. I tried talking to my parents about it but was so embarrassed by the situation and the little involuntary part I played in it that I couldn't fully make my case as to why I needed their help. [I have to say I wish I could go back and change how those conversations went from my end, but when you're a child it's hard to overcome the emotional pieces...but you know that...] At any rate, I tolerated this miserable situation through 5th and 6th grades. Removal to middle school helped somewhat though it also physically separated me from the one friend who had stuck by me in 5th -6th grades. I made a couple of new friends, but mostly stuck to myself in middle school. High school and the relative anonymity of a school full of 1600 bodies was my best cure. I still viewed myself as an outsider and although my self-image improved a degree, I can truly say that it wasn't until a decade ago that I fully processed and excised the effects of those two miserable years from my psyche. Even today on a dark sleepless night fraught with other worries the enemy of my soul will remind me of the pain of those days. Hard to believe that 30 years later the words of a few probably insecure children can still bring me to tears. I am grateful for my faith which has lessened the pain and brought good fruit from it as well. I believe my own experiences have given me a passion to advocate for individuals with differences. I think I am also more sensitive to when people are hurting, and I have a deep desire to help in whatever way I can. So all's well that ends well, right?

If I can help one child avoid the misery that I felt for those two years the series I'm embarking on here will be worth every effort.

I also have to say that as I'm posting this it breaks a long silence. I have acquaintances on facebook who knew me at this time (heck there's a picture of me from 5th grade there - ugh!). My mom reads every blog post (Hi, Mom - I love you!) and it may be somewhat shocking to her to read these words. I want to be clear that I hold grudges against no one. Hindsight brings great clarity. Everyone was doing what they could to maintain their position in the social construct. What scares me is that today's bullying cases are leading to more than just tears. Children are dying. We've got to stop this for every child that we can. That's the goal.

Over the next period of time I'm moving away from my standard posting format. I'll be inviting some guests to comment on this and related topics. I'll be sharing resources I've found so far. I'll be sharing steps that I'm taking with my own daughter, and asking for ideas from you. I'm not sure how long this series will last. I hope to post at least once each week. If you have questions or ideas that you want me to research, please leave those in the comments or send me a note and I'll address those as well. This is so important. Thanks for your attention.

Sunday Digest 37

So much to share with you this time around that it may not all fit into one digest. There has been a lot of amazing stuff on my favorite blogs to visit lately...

1) My fellow 5 Minutes for Special Needs contributor, Suzanne, shared her inward (at least) response to a person who left an anonymous note on her car window. I hope the person read it, somehow. Just another reminder that not every disability is visible, even the physical ones. Let us be kind to one another, please.

2) My "down under" blogging friend Autism &Oughtisms shared a touching post about her autistic son and his imaginary friend. In addition to exploring various theories of imaginary friends, she explains how she views this as a positive step in her son's development. I distinctly remember my own joy when my daughter at more than four years old pretended to use an invisible object in her play for the first time. I was ecstatic and nearly burst into tears.

3) Tammy over at Praying for Parker expressed one of my darkest fears. Statistics estimate that 90% of unborn babies diagnosed with Down Syndrome are aborted. Tammy points out that some view this as a way of preventing Down Syndrome. What happens when we can test for autism prenatally? I have no doubt there are people working toward this. I can't quote statistics, but my general sense is that the average joe (or jane) has a more positive view of Down Syndrome than they do of autism. Interestingly, both disorders can have a whole range of effects on the developing child, so termination ends a life that isn't fully understood. I think I am particularly sensitive to this topic right now because an acquaintance of mine is expecting the birth of her third child in the next few weeks. According to some prenatal screening her unborn son has a higher than normal risk of Down Syndrome. She already has one child with special needs...and has gathered a whole pack of people around her to pray, not necessarily that the test will be wrong, but that their family will be able to celebrate the birth of their son no matter what the future holds.

4) I continue to enjoy the Special Needs Siblings Saturday posts at The Squashed Bologna. Mid-October, Varda's guest blogger was Michaela Seafoorce. I ready her SNSS post, but also followed Varda's advice and read two of her posts on her own blog here and here. I have been thinking a lot lately about peer advocates and how to find them, how to teach them, what to say. Michaela is just one example I've looked at. More on this in the weeks to come as I get my thoughts together...

5) I am kind of shaking my head these days in disbelief that I'm the mom of a second grader. It's all going by so fast. Laura Shumaker's post at City Brights about the transition to adulthood was a wake up call...time will continue to fly by and one day the child will be the adult. What then? The only thing I can do at this point is to continue to try to build in the skills and support that she will need when we get there a dozen years or so from now.

I hope you will enjoy all the links as much as I did, and if you visit do let them know you found them through The Simple Life.

Sunday Digest 36

It's time for another Sunday Digest - actually it's overdue! Somewhere between technical difficulties, toilet learning (one down, one to go) and other parenting duties you will find the time I was supposed to be getting this done...sigh. Meanwhile, I have found some interesting posts to refer you to, and here they are:

1) 5 Minutes for Special Needs, where I'm thrilled to post weekly, has a new feature, called "Ask the Parents"...you can go here to read about it and see how it works. The idea is to gather questions from our audience that we can respond to directly as well as reply to in posts. If you have a burning question for other special needs parents, ask away!

2) As always, my blogging friend over at Autism & Oughtisms is stirring the pot with a detailed look into intellect and intelligence, and all the labels that we throw about so casually...

3) I did a guest post over at Books 4 Christian Kids a little over a week ago. The book has little to do with Special Needs, per se, except perhaps that our kids may be more prone to anxiety issues. Ready for Anything, the book I reviewed, could be a gentle entry point for talking about worry with your child.

4) I couldn't have said this better myself. Tammy over at Praying for Parker says it like she means it. Education choices abound in the Special Needs world, and sometimes it seems like everyone has an agenda. No one could doubt Tammy's Special Needs Advocate pedigree, but she chooses to homeschool Parker because it is best for him. Not only can she meet his specific (tactile) learning style, she can protect him from the myriad germs that would make him sick if not threaten his life. I can say, as a parent of a child who is mainstreamed in a general education classroom that I totally respect her choice...I couldn't pull it off with my own child, but I applaud her ability and would never question her decision on some argument that her choice negates or makes mine any harder to achieve. Parents should choose the best education they can find for their own child, and that's the ideal we should be working together to achieve.

5) And speaking of such, doesn't this sound like a lovely neighborhood? Thanks for sharing it with all of us, Kristina White via Hopeful Parents.

Until next time, click away and if you leave a comment make sure you tell them you found them over at The Simple Life.

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.

Sunday Digest 34

Here's the best I've seen while scouting around...still horribly behind on blog reading, but I was caught up on laundry...briefly...one day last week.

1) Sometimes you need to walk a mile in another person's shoes. Sometimes you just need to read a very passionate blog post. Even other special needs parents may not always "get it" when comparing worries. Check out this post by my fellow 5 Minutes for Special Needs contributor, Heather P.

2) I loved this post at Autism and Oughtisms which so clearly explains how even the verbal child on the autism spectrum is affected by language delays and communication challenges. I have tried to explain this in some of my own posts, but this mum (from New Zealand) says it so much better.

3) Having just celebrated the 4th of July, it seems fitting to spend a couple of minutes supporting our military families who are also special needs families. You can read this post at Hopeful Parents by Diary of a Mom to find out how you can help.

4) I'm still loving the Special Needs Sibling Saturday series over at The Squashed Bologna. Varda has located some of the best parent bloggers around to help us see the intense sibling relationship through several new lenses. Read the latest here and the whole series here.

5) And I'm cheating a little because I'm posting late and Tara over at kidzorg posted her Monday story early...Ever wished you could have one of those reality TV shows come and redo part of your home? There's a charity that does this for children with special needs...you can read about it here. [We don't need a makeover so much around here as someone with some insane organizational skills...in case any reality TV shows are scouting for story ideas...just sayin']

Sunday Digest 33

Hard to believe it is time for another Sunday Digest already. To be honest I am more than a bit behind on my blog reading...just like everything else. Summer hits and I get busy with the kids and trying to keep up with the dishes and laundry (failing at that, too) many other things get put aside for "later". Here are a few things I've stumbled across that I want to share with you, though...

1) Shortly after my own foray into the "R-word" battle, Autism and Oughtisms posted this lovely piece. I think you will find it quite enlightening.

2) How many times have I wished for someone to help me find resources, set goals, meet milestones? We were quite blessed a couple of years ago to be met in our hour of greatest need by a couple of "experts" who were willing to help us define and achieve some basic behavioral goals for our daughter. Their input made all the difference for us. I certainly wouldn't be writing this blog without them. Autism Speaks published a guest post from an organization trying to get a "life coach" program started for families in need. Here is more info.

3) We had fun last week making our own tote bags following the directions here. I made three bags (one for each kid) from some canvas left over from another project and some cotton webbing I bought last Summer (see how far behind I am??). The sewing took about 2 hours for each bag (I am slow) but it was all really simple - straight lines, you can't go wrong! We decorated ours with fabric paint/marker and some old buttons I found. I will try to post some pics in the art gallery soon. I'm encouraging the kids to use them on our weekly trips to the library this Summer. They love them!

4) Hopefully this week my daughter and I will begin writing a story about how everyone is different. This will be step one in beginning to explain her own challenges to her I hope in a very positive way. On that topic, this post by Resident Alien caught my eye.

That's it for this time around friends...feel free to share your favorite links or fun Summer things to do in the comments below. Enjoy!

Sunday Digest 31

Here is the latest and greatest...the posts that I found particularly helpful, inspiring, moving, or funny in the last few weeks. Click on the links from my on-line friends and if you leave a comment make sure to tell them you found them via Simple Life. Thanks!

1) I loved this post by Autism & Oughtisms exploring speech development and how much more one can notice each stage when there are delays. Little things like learning to say "um" when you're having trouble thinking of the right words...I remember being so excited when my daughter learned to say yes when she meant yes. So important.

2) My fellow 5 Minutes for Special Needs contributor, Lee, shared about their annual "prom night" sponsored by a local high school for teens and adults with special needs. It sounds like a wonderful evening for everyone who is involved.

3) Bird on the Street hit a home run with this post about raising a special needs child. Yes, there are challenges but  maybe not the challenges you would expect a parent to be bothered by.

4) Having a sibling with special needs can be...challenging. This brother seems to have it figured out. Thanks for sharing, Mary Hill at Hopeful Parents.

5) And this post, from Specialgathering is just plain funny. 

Fragile X Syndrome

Over the last year or so I've written some short pieces about Fragile X Syndrome, but I've never written a primer about it. It is timely to do so now for a couple of reasons. First, a group of Fragile X advocates - parents, doctors, therapists and researchers - recently completed an annual trip to Washington, D.C. to meet with various congressional leaders to encourage them to increase funding for research into Fragile X Syndrome, and to sponsor legislation to benefit individuals with Fragile X and other special needs. Second, in just a few short days Autism Awareness Month (April) will begin.

Are you aware that for 2-6% of all individuals diagnosed with autism, the Fragile X gene mutation is the cause? That may not sound like much, but it is the largest known, single-gene mutation cause of autism. You can learn more about the distinction between the two disorders and the link between them by reading here. Suffice it to say that anyone diagnosed with autism should be tested for the Fragile X mutation and that any strides toward understanding and treating Fragile X may help us learn more about autism, too.

Fragile X is also the most common inherited form of cognitive disability. It begins as a mutation on a gene (FMR1) found on the X chromosome. This mutation affects the structure of the X-chromosome such that under magnification it actually looks "broken", hence the name of the disorder. The FMR1 gene is responsible for instructing cells how to make the protein FMRP. The role of FMRP is not known, but clearly has some role in brain development. In the simplest scenario, because FMR1 is located on the X-chromosome, Fragile-X is carried by females. Since females have two X-chromosomes one can still generate FMRP if the other bears the FMR1 mutation; they have the mutation, but not the disorder. Males with a fragile X cannot make FMRP and will develop the characteristics of Fragile X Syndrome. However, both males and females can be carriers and both males and females can have Fragile X, so it's complicated.

In addition to behavioral characteristics that are similar to autism (language delays, motor delays, sensory disorder, poor eye contact, etc.) often individuals with Fragile X have some physical characteristics in common (large ears, long face, soft skin, flexible joints, and flat feet). Usually there are cognitive issues ranging from mild learning differences to severe cognitive disabilities.

To learn more about Fragile X, I recommend starting at the National Fragile X Foundation website. In particular, this video, which I have linked to before is very powerful.