B is for Blanket...and book

I almost forgot to ask the child to tell me something that starts with B that I could take a picture of. When I remembered, she was already snuggled up with Daddy for Bedtime Stories. When I asked she said, "Um..." and in the intervening pause I gave her a suggestion (Bad Mommy...) I'll include my suggestion below because I'm so dang proud of it, but first, I'll show you what she came up with on her own several minutes later. She finished her story with Daddy and came out to the kitchen to tell me she had thought of another idea for B, "Blanket! My Rainbow Blanket." Since the Blanket is a bedtime must I had to take a quick photo and pop her Back into Bed.

Her "Rainbow Blanket" is another gift from Grandma. Noticing a trend here? I think she got it when she was one. She is now eight and she still loves it and takes it everywhere except camping. She doesn't want it to get dirty so camping is not an approved activity. I love the Noah's ark imagery. She loves it because it is colorful.

What I had suggested to her is Book. She was very excited that she got to bring home her Poetry Book from second grade yesterday. She had been looking forward to this project since we toured the second grade classes on open house night about a year ago. Writing has been an increasing challenge for her, but her teacher says that poetry was very encouraging for her. Maybe because it is short. Maybe because poetry is unconventional anyway. Maybe she just likes the "free spirited-ness" of it. Her dedication at the beginning of the Book says it all "I dedicate my poetry book to my mom and dad for letting me do what I want." So here are some pictures of the front (left) and back (right) covers of her Book. They were asked to decorate the covers with fireworks and these were her original creations.




And one sample of her poetry... (a color poem)

Red is a smooth brick.
Orange is the cap on the glue.
Yellow is the bright sun.
Green is the field grass.
Blue is the cold ocean water.
Purple is a sweet plum.
Pink is the evening sunset
Gold is some autumn leaves
Peach is some skin.

Yes, this girl loves her colors!

 

To see the other B posts don't

forget to visit the Linky List here!

Trisomy 21 - Down Syndrome

When I started this series on the various trisomy genetic disorders, I knew this day would come. How does one even attempt to summarize Down Syndrome in a short blog post? I'll start with the disclaimer that none of my primers are intended to be all-inclusive. They're just a starting point to begin to familiarize the public at large with conditions that sometimes are quite rare and unknown. Down Syndrome doesn't really fit the unknown category, but it may fit the misunderstood category. People may think they know what Down Syndrome is, but have some serious misconceptions mixed in with their facts. My hope is this primer will make you want to learn more. Down Syndrome doesn't really fit the rare category either. Trisomy 21 is the most common single cause of birth defects, and occurs in approximately 5 of every 10,000 births. The condition is named for John Langdon Down, who described the condition in 1866. Dr. Jerome Lejeune linked Down Syndrome with an extra copy of Chromosome 21 in 1959.

Like all trisomy disorders, Down Syndrome occurs when there are three copies of one chromosome (Chromosome 21 in this case) or part of a chromosome. You can look at my general post on Trisomy to learn how this happens. It is an entirely random genetic mutation that cannot be prevented. Genetic counseling is advisable for people who have a family history of Down Syndrome, women above the age of 35, or parents who already have a child with Down Syndrome. Trisomy 21 can be diagnosed prenatally. Screening tests may indicate a higher risk for Down Syndrome and more conclusive diagnostic tests such as amniocentesis can confirm the diagnosis. These tests may carry risks of their own which should be considered carefully.

Each individual with Down Syndrome will be affected differently, but there are several common characteristics, including:

• decreased muscle tone
• single crease in palm of the hand
• cognitive delays
• impulsive behavior
• short attention span
• heart defects - atrial septal defect or ventricular septal defect
• eye problems - cataracts, corrective lenses
• gastrointestinal blockage - esophageal or duodenal atresia
• hearing problems
• narrow airway - sleep apnea

With improved medical treatment options, the average lifespan for individuals with Down Syndrome is nearly the same as normative peers. With early intervention and supportive family, individuals with Down Syndrome can graduate from high school, attend college, and maintain productive careers. Finally, I think I've shared this before, but I want to emphasize that each individual has something to contribute to society, and we have more in common than we may think. Please watch this short video by a young man with Down Syndrome and his parents. It is well worth your time.


Additional resources:

• PubMed Health - clinical description
• National Down Syndrome Society - especially this page
• National Down Syndrome Congress
• DownSyndrome.com
• Praying for Parker - especially this post

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.

Work

A lot of people are looking for it. Evidently being a mom doesn't qualify (at least in some people's lexicon.) A few people are addicted to it, but a lot of people wish they didn't have to do it.

I have kind of an interesting perspective on work. I have tried to juggle work and being a mom in just about every combination known to woman. There are pros and cons to each situation, and I still haven't figured it out by any stretch.

I was a full-time mom when the child was a newborn until she was 8 months old. Then my maternity leave ended and I "went back to work." She was a pretty demanding baby, a function of what we now understand as her sensory disorganization and oral motor challenges. Honestly I was pretty overwhelmed with her care, and just starting to hit my stride when I resumed my teaching position. I'm very glad I had that time with her, but since I had expected to return to work I didn't really allow myself to settle into being a mom.

When I returned to my job my husband and I had a strategy to keep us both working and to keep the child out of daycare. It worked for a while, but we were stretched thin, and we knew it early on. It didn't make sense for me to keep working and essentially hand over my paycheck to someone else so they could be with our daughter. So I finished out the academic year and returned to full time momming.

It took a while for me to settle into my role as a stay at home mom. I wasn't bored (too busy for that...) but I did miss the sense of accomplishment that comes with completing a project or knowing that you've truly been helpful to someone. Somehow folding the laundry didn't quite cut it. I still enjoyed the new freedom, though, and explored some new hobbies. Just when I was starting to get in step again, the twins arrived on the scene, and the child's issues came front and center. Suddenly we were stretched again physically and emotionally. The economy shifted, and now here we are...

It became clear that I needed to start working again, this time from home and in partnership with my husband to boost our income a bit. I have to admit there is a piece of me that is loving the feeling of professionalism, and problem-solving, but it may be the worst of both worlds. I am distracted from my kids who still need a lot of supervision and training, I'm limited "at work" by what my kids need, and I'm still seen as an "at home mom" who has so much free time on her hands to...

The point is, work is important. It is important not only as a means of support for our families, but as a fulfillment of a basic human need. Adam and Eve worked in the Garden of Eden even before that whole apple incident. Their work was satisfying and fruitful without the drudgery that stifles us today. We were made to work. In whatever way you work - in or out of your home - it's important to understand that you're striving to do what you were made to do, but in a world that is waiting to be restored. It won't ever be quite perfect.

Waxing eloquent on the Wonderful letter W. Click here to see the other works of art...

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.

Reprise - Timer Tools

We are feeling the sandwich squeeze for the next couple of weeks as we are taking on my mother-in-law's care to give my sister-in-law a little break, and hopefully enjoy Easter with Grandma. To make things a bit easier I am reposting this oldie but goodie - originally posted April 2010. I started using timers with the child, and now I find I use them for myself almost as much as I use them for her...my frazzled brain needs something to remind me that I was just about to do something. My daughter has also taken on setting her own timers - for when to do homework, how long to use her mouthwash, when I've told her she can watch a show. It is a great skill to learn. Timers are just wonderful...

Many children, but especially those with special needs, struggle with transitioning from one activity to another. One very powerful tool to helping a child with special needs navigate their day is the use of a visual schedule, but just knowing the order of events to expect may not be enough. How much "time" can be alotted for each activity may also need support tools. For children with special needs a portion of the struggle can be understood as a poor concept of time. How much time to do I have to play? When do I need to be ready to go to school? What time does the party start? When will my friend come to play? All of these questions and more may be hard to conceptualize, vocalize, or comprehend the answer to.

Allow me to introduce you to my favorite time keeping tools:

(pictured above, left to right, top to bottom)

The digital clock - ideally a child will also learn to use an analog clock at some time, but when a child has learned numbers up to 59 a digital clock can be a much more accessible tool. We use the digital clock in our car to talk about what time we need to be somewhere, and what time it is now...so are we running late and needing to hurry, or do we have plenty of time and can relax.

The Time Timer (TM) - available in many teaching supply stores, the Time Timer also comes in a smaller more portable version, and is an excellent tool for children who are extremely visual. "How much time do I have to play?", "We have 30 minutes before we need to get in the car. Would you like to see how much time that is?" After a lot of use the child knows a little red is a little time, etc. There is also an audible (but friendly!) beep when the timer reaches zero. Our favorite use for the Time Timer is to set a kind but firm limit on "snuggle time" in the morning before time to get dressed. Because we always use it for this function we need no verbal reminders of what it means when the timer beeps.

The sand timer - also available in many teaching supply stores, and in various lengths of time. We have a one minute timer and a two minute timer. Thankfully we don't use them too much any more. They were primarily used for "time outs". Our time outs are used to reinforce our house rules and as an opportunity to calm down. Using the sand timer can be beneficial because watching the sand flow from one side of the vessel to the other is mesmerizing and has a calming effect. Hooray!

The portable timer - excellent for trips to the park ("We need to leave in 5 minutes...I'm setting my timer"), events in the back yard, or anytime that we're moving around the house a lot. It can also be used when giving the child a choice (and a little control) over which timer they want to use. "You can play on the computer for five more minutes...would you like to use the red timer (Time Timer), the white timer (portable), or...

The kitchen timer - ours beeps until you turn it off, so it is harder to ignore and claim that it didn't run out yet. It's only downfall is that it is rather fixed in place, so it requires some back and forth if you are elsewhere in the house.

I think as our world becomes more hectic, more technological, and more complicated, everyone seems to struggle with time management. There's a whole arsenal of tools to help our kids begin early to learn skills to manage their time, and bring some measure of peace to the flow of our days.

Special thanks to two wonderful people, Clarissa Montanaro and Robin Hauge, who turned me on to the power of using timers with children with special needs. Please contact them at clarissamontanaro-AT-gmail-DOT-com for more information.

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.

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!

Overlooking the Obvous [Or Obvious...]

On Tuesdays and Thursdays my dear husband works long hours away from home, and I cart the children around from one activity to another. It is perhaps unwise that these are also the days that the twins don't usually get a nap. In any case by the end of these days I am tired, and more than ready to turn on a show for the children and sneak off to my computer.

The other night this was not a good idea.

The child finally told me what the twins were up to. They had used some ketchup from dinner to try a little fingerpainting on the coffee table. Ahem.

I scolded them, but was more angry at myself. I should have known better.

I cleaned it all up, or so I thought, and hustled them off to bed to prevent further catastrophes. This was on Tuesday. Now it is Thursday night, and I'm finding it frustrating, and maybe a little funny, that I keep finding ketchup. Nearby the coffee table we have a leather ottoman and couch. Beige leather. Red ketchup. How could I miss it, right? Somehow I'm sure I'll find another spot somewhere. I think in my haste to "clean up the mess and be done with it" I overlooked some of the mess, even though it was obvious.

I have a tendency to do this with more significant spiritual matters, too. Things that I know are not a good idea. Events when I really should know better. Messes that I want cleared away and "dealt with." How wonderful to know that I have a Father who knows where every spot is. He has a way of drawing my attention to each issue, in its time, and saying, "Here, let's work on this one now."

Celebrating the letter O with Jenny Matlock and the Alphabe-Thursday crowd. Click here to see Other Opulent Offerings on the letter O.

O was the first letter the child learned. It was natural progression from her obsession with balls, and all things circular and spherical. Funny to remember that...

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.

Hosting a Sleepover...

The child informed me some time ago that she wanted to have a sleepover party for her eighth birthday. She starts planning her next birthday approximately 24 hours after the previous party, so I've been hearing about this for a while. When I realized this would be my first sleepover as "The Mom" I got nervous. It was also a bit challenging as our budget is still...well...not feeling the economic recovery we've been hearing so much about, if you get my drift. In the end my newly minted eight year old declared this, "The Best Birthday Ever" so I figure we did a thing or two right. I thought I'd share my strategy with you and would love to hear your ideas, too. Feel free to leave a comment below.

• Set the boundaries and expectations - I agreed to a sleepover party with a couple of conditions. First, only two friends could come. We usually have a one kid per year rule, but to save my sanity we cut that way back. The child selected two friends that we know from her Kindergarten days. I also made it clear that this really would be a SLEEPover, or it would be the last of its kind. My sleep pattern is messed up enough without the shenanigans of three giggly girls thrown in there.
• Keep it Simple (what else) - We did a craft project, ate dinner together, watched a movie, ate cake, opened presents, and tucked everyone into sleeping bags. The craft project became part of their goody bag. The dinner and cake were all homemade. The movie was very rated G and straight out of our video collection.All of this simplicity helped save mommy's mind and money. We had just enough structure to keep everyone regulated, with enough freedom to keep it fun.
•  Check in with the guest's parents - I was glad that the parents of one of the girls warned me ahead of time that sleepovers had been challenging for her. I didn't make a big deal out of it with her, but I knew that I might need to make a phone call if she got too worried. We were all thrilled when she made it through the night with us. It really made the event extra special.
• Bribery - yes, really - At bedtime I told the girls they could talk and laugh for 15 minutes, and then it would be time for lights out and quiet. That worked great. I don't know when they went to sleep, but they were quiet. What didn't work great was waking up at 6:30 the next morning to shrieks of laughter. In my half awake predawn state at first I thought our nervous guest was freaking out. I hurried to the child's room to find them all giggling and bouncing around on her bed. Um...no, not what I had in mind. "Do you girls like pancakes?" I asked. "YES!" they clamored. "Great! If you want some for breakfast it better be quiet in this room for another...hour (I said while looking at the clock.)" They did get quieter, though they did not actually go back to sleep. It gave my nerves time to settle, though.
• Look around for FREE family friendly events - My  husband gets to take credit for this one. He noticed a free event happening at a state park near us on the day after the sleepover. We invited both guests to go with us to this event, too. Only one was able to come, but it made the celebration last a little longer without more cost. If time is an issue find something on the evening of the sleepover instead.

Including food and favors we spent about $35 total on this party...that's food and entertainment for seven people  for close to 24 hours. That might sound like a lot to some people, but around here people spend hundreds on their kids' parties, and I bet they don't have more fun that we had. To hear the child tell it, it was the coolest thing ever, and awesome on top of that.

What's your favorite birthday bash secret?

Lemon Pie

I don't often share recipes here, although cooking and baking are among my favorite activities when I have time for them. I Love the predictability of it...Measure these things, Combine them in this way, Be careful of this, and in the end you will have this Lovely creation. I don't have much predictability around me these days, so it is a nice change of pace.

For some reason the letter L (our Alphabe-Thursday target of the week) made me think of Lemon Pie. Maybe its because our Lemon tree has a Large crop of itty-bitty Lemons just waiting for me to pick them and use them up. It stirs up Lots of fond memories.

I first discovered this recipe in the pages of a children's cookbook that my mom handed down to me. I don't think we ever made this recipe when my brother and I were growing up, but just handling the book brings back memories of the days when Mom decided to let us take turns cooking things each week. Pocket sandwiches, frosted meatloaf, and cornflake chicken I know we tried, among others. When I discovered the lemon pie recipe I was looking for something simple that I could prepare with the child. She was a little over five at the time, and we were smack in the middle of the most challenging time that we had ever experienced with her. Her language was at 2-3 year old level, as were her fine motor skills and attention span. The twins were a year old - less physically needy, but demanding their own share of attention. The child was still pretty angry at me for disappearing on her at the time of the twins' birth, and I was having a hard time reconnecting with her because of her aggressive behavior toward me and her siblings. It was a mess, and we were desperate for help. In answer to my prayers (yes, really) God brought us under the teaching of two extremely talented and service-hearted women who helped us learn so much about how to reconnect our fragmented family, and support the child's behavior better at home, and then in every other environment we took her to. One of the keys was finding ways to meaningfully engage her in activities, especially with me. So I was trying to find an easy recipe that we could do together from beginning to end.

We started by picking lemons from the tree. Then hand over hand she helped me zest and squeeze out the juice. Together we whisked the ingredients together and poured them into a prepared crust. Throughout the experience she let me touch her, help her, encourage her, and enjoy her. All of these had been difficult for many months on end. I was anxious the whole time, just waiting for her to get frustrated or bored and explode, but she stuck with it the whole time. Something so simple, but to me a precious touchstone anytime things start getting hard again. I now trust that we'll be able to work it out. Every time I make this recipe I remember that day almost three years ago, and I smile. Here's hoping it brings you some smiles, too:

Creamy Lemon Pie

Lemons
1 egg
14 oz. sweetened condensed milk
frozen whipped topping, thawed
9 inch graham cracker crust

1. Prepare 1 teaspoon lemon zest.
2. Prepare 1/2 cup of lemon juice.
3. Beat egg in a medium sized mixing bowl.
4. Add sweetened condensed milk to egg.
5. Add lemon zest and juice.
6. Stir until the mixture starts to thicken.
7. Fold in half of the frozen whipped topping.
8. Pour the filling into the graham cracker crust.
9. Cover filling with remaining whipped topping.
10. Freeze the pie until firm.
11. Garnish with extra zest or a slice of lemon.

Adapted from the Better Homes and Gardens "New Junior Cook Book" (1979) page 92. [This is probably the Old Junior Cook Book by now...]

Amazing that something so sour can make such a sweet memory. When life gives you lemons...

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.

It's Raining...finally

Here it is January, and the dreaded rain has finally come, only now that it's so late to show up it's more to be desired than otherwise. The only thing I like less than a Rainy Winter is a Droughty (is that a word?) Summer. I don't know if the rain is here to stay or not. I know the forecast for the next few days is wet. More than a few days "trapped" Indoors and my kids start to get out of whack - and so do I - "Cabin Fever" at its worst. So I thought I would brainstorm for myself, if not others, what we can do on these lovely wet days in front of us...besides watch TV, I mean. Meanwhile we're celebrating the letter "I" because it is time for another round of:

Imbibe games. We got some really lovely preschooler friendly (no reading, no complicated rules) games for Christmas and Birthdays this year. We already had Candy Land, Shoots and Ladders, and Cootie. Now we have Hi-Ho Cherry-O, Monkey Dunk, and Don't Break the Ice added to our collection. We also have a couple of "concentration" games. These are all easier for the child to master, too, and she loves to be In charge of the game. The kids love to play these and usually once I get them started I can even sneak out for a round or two.

Invest in puzzles. Jigsaw puzzles are great, too, for problem-solving, visual-motor coordination, fine motor skills, and ample opportunity to layer on the praise and self-confidence. They require a little more supervision around our house since my kids love to mix the pieces together and use them as mini-frisbees and such. Keep an eye on all of this.

Images in paint. My new favorite art activity for the kids is watercolor. With a heavy, broad-bottomed cup of water an inexpensive brush, and some paper - scratch or otherwise - some pretty impressive art can occur with minimal input from Mom. Clean up is pretty easy, too. Rinse the brushes and throw the cups into the dishwasher. Put the masterpieces somewhere to dry and voila, we're ready for the next activity.

Investigate outdoors. At the first signs of rain my kids are usually eager to get out in it, believe it or not. The sensation of fresh water bouncing off their skin is Irresistible, it seems. Last I checked children don't melt. We have nice raincoats and boots that were just made to get wet, and even if their regular clothes get a little wet, what's another load of laundry compared to some fresh air and exercise?

If it sounds like I'm giving myself a pep talk, I am. I've mentioned before that the long rainy days of Winter can get the best of me. This too shall pass, but until it does, I want to remember these gray days as opportunities to make fond memories, not as days endured with clenched teeth.

Got any more Ideas for me? Please pass them along by clicking on "comments" below. Thanks! Don't forget to check out the other creative "I" riffs here.

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.

Book Review - The Interrupting Chicken

Dinner conversation at our house these days is an event to witness. Everyone has something to say, even if it is not relevant to anything, often all three children are talking at once. I try to moderate:

• "It's Sissy's turn to talk, please wait."
• "Make sure no one else is talking before you talk."
• "Mommy can only hear one person at a time."

I am not always this calm about it. The child hates being interrupted and because of her language processing issues it takes her a while to figure out what she wants to say. If she is interrupted she has to start back at the beginning (yep), and then she has to figure out what she wants to say all over again. You can see why it is upsetting to her. Meanwhile her social skills haven't quite reached the level of knowing when she is dominating the conversation. She rattles on and on and her siblings just want to ask for more bread. Fun times. Really.

I asked for some help from our Speech Pathologist at school, and she recommended this fun story about interrupting. I'm not sure it is quite what I was after, but Interrupting Chicken is a really cute story. The little red chicken is all ready for bed but she wants a bedtime story. Papa agrees to read on the condition that little chicken will not interrupt. You can tell they've been through this before. "I'll be good, Papa." Papa tries three different familiar stories, and each time little red chicken interrupts and "ruins" the story. Papa gives up in exasperation. He is more sleepy than little chicken. He decides to turn the tables and have little chicken tell the story. So she writes a story and reads it to Papa, who interrupts, "ZZZzzzzzzz." Finally we see them snuggled up together fast asleep. This reminds me of our family. Daddy often does the bedtime stories and can read himself to sleep quite easily. Meanwhile the kids are still wired and ready for action.

Taken as its own story, this is a great book, as evidenced by winning a Caldecott Honor Award. The text is engaging and easy to read. The illustrations draw you into the story until you feel like you are in little chicken's room trying to get her to sleep. I really like how the three familiar stories are brought in both in text and illustration. I think it helps the reader understand the impact of the interruption.

For my purposes, I'm not sure this is quite what we need. First, the book isn't about a conversation, but story time. Though not perfect, our kids have gotten a lot better about sitting and listening to a story. All of those trips to the library are starting to pay off, I think. My second hesitation with this book is that there's no clear consequence to little chicken when she interrupts. In fact she kind of gets her way because she wants to stay up later. That's the kind of message I don't want my kids to pick up on. I want them to learn that interrupting is rude and reaps trouble.

So I'm still looking for a tool to help teach my kids polite conversation skills, but if you want a fun read, check out The Interrupting Chicken. If you know of a good book I should check out, let me know in the comments below.

The Year 2011 in Review

At the beginning of 2011 I did a post detailing my goals for the year. I decided I should do a retrospective post here at the end of 2011, and maybe that will inform my goals for 2012...So here is each goal with my grade and comments for each.

Get organized - Well, no. I made a good effort at the beginning of the year, and depending on the day had some surfaces cleared and progress made on others, but if you looked at my desk right now, organized would not be the word that comes to mind. It is really hard to get organized when there are four other people in the house working in the opposite direction. To keep plugging away at this is basically to bang my head against a wall repeatedly. For 2012 I think I will focus on keeping the spaces that I use the most neat and tidy, and try to help at least three of the four people I live with learn to clean up after themselves occasionally. C for a good effort.

Get a shower. Though it didn't translate to earlier bedtimes or waking times as I wanted, I did grab a shower more frequently than previous years. I have proven to myself that it can happen when I really want it to, which is a step in the right direction. B needs improvement.

Improve my writing. So I never got around to the 31 day challenge I had intended to, but I did something else instead. In addition to my writing here I'm exploring options that might actually pay a little. That would be nice. Part of one of those options included taking two writing workshops, which was great fun. I even learned a little about SEO. In 2012 I just hope to find more time to write about the things I am passionate about, and in particular to return to posting here more frequently. A- get back to work!

Make my husband's lunches more interesting. Did you know that it takes just as long (or longer) to make a sandwich as it does to fill a thermos with yummy homemade soup? It's a lot of fun to mix different foods into the lunch time grind for my hubby. He seems to appreciate the extra effort. A+ Keep it up!

Get a clearer vision for who God wants me to be. So my ongoing study of Proverbs 31:10-31 (yes, I will get back to that series soon here) has helped, I think, to keep my attitudes in check and my priorities straight. There will always be a lot to do, but to do it well, in an attitude of service and humility is the goal. To hear the child already, in quiet and calm moments, tell me what a good mom I am, that is what I'm after. A- keep at it!

Clearly there is more to do. May God's grace cover the shortcomings of 2011 and His strength lead us into 2012. Happy New Year!

Did you reach your goals in 2011?

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.