Friday, February 25, 2011


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. (Proverbs 31:10-13, NIV)
Continuing our look at the Proverbs 31 woman, the next adjective that describes who she IS connects her character with what she does (which is sometimes what we focus on instead.) She is eager. In verse 13 her eagerness is connected with selecting wool and flax and working with them. We're pretty familiar with wool - collected from sheep and spun into yarn or thread to make clothing. Flax is a type of plant, and it's fibers can also be used to make thread that is used to make linen. We'll see later in this passage (verses 19-24) that this woman makes thread, and uses the thread to make fabric, and uses the fabric to make clothing both for her family and as a business to sell linens to the shipping merchants. This is HER WORK. I can't remember the last time I made thread from wool or flax...actually I never have, though I have seen a spinning wheel in action and have friends that do some weaving. I've tried doing a little sewing (though I'm not brave enough to make any clothing yet) but generally just purchase what we need off the shelves of local retailers. The point is that she meets her work with eager hands. What is my work, and am I eager about it?

Eager is not a word we throw around these days, so I spent some time looking it up and considering what it means. According to the World English Dictionary eager means:
  • impatiently desirous (of), anxious or avid (for)
  • characterized by great desire or expectancy
  • feeling great desire or expectancy
The word eager in the NIV (willingly, KJV) is translated from the original Hebrew chephets (khay'-fets), which means pleasure, desire, a valuable thing and is derived from chaphets (khaw-fates'), to incline to. She takes pleasure in her work. She desires to do it. It is something she values. Given a choice she is inclined to work.

I have several different kinds of work: childcare, cooking, housework, office work, writing, and volunteering. Some of them I am eager about: cooking and writing, for example. Others I would rather disregard and go read a good book...housework probably falls in that category. Nonetheless I know that all of my work is valuable and necessary. I think I'll be looking for ways to make my work desirable, and something that I look forward to with expectancy. Perhaps if I ask God, He can show me how to be eager about it. I also think I'll be even more grateful for the work that is already pleasurable. How good that God planned for work to not be drudgery, but enjoyable.

Sunday, February 20, 2011

Sunday Digest 28

So much to share this time that it's going to be hard to choose. I'll try to spread the linky love around...

1) This post from Reports from a Resident Alien helped me understand the difference between emotional self-regulation and being mature. I love getting this woman's insights because she lives with autism and although autism is different for each individual there is a lot that can be understood in general terms from one person's experience. This post was particularly helpful for learning skills to cope with and manage emotional outbursts in a mature way...skills that I'll need to be sure my daughter develops.

2) The instinctive drowning response is a powerful analogy to describe the situation that families with special needs children sometimes find themselves in. We were there (briefly) and fortunately found the support we needed to get back on track. Now I see other families there and wonder how I can help without risking our own equilibrium. According to this post at Hopeful Parents the first step is to get into the pool.

3) Praying for Parker now has a sponsor that is making beautiful embroidered letters which can be used for tactile learning, early writing, phonics, etc. If you have access to an embroidery machine you can buy the pattern for the letters for $15 and help pay Parker's medical bills. Sweet!

4) Laura Shumaker recently had a post that highlighted the Transition Planning Kit recently launched by Autism Speaks. The kit helps families who are preparing their adolescent children to be adults, a key phase in finding support, resources, and information for more independent living.

5) Bird on the Street wrote this powerful piece describing the day she and her husband were faced with a life and death decision for their son, Charlie. They had to listen to their own instinct and overcome the naysaying of experts to choose time, information, love and life. Amazing.

Thursday, February 17, 2011

Fret Not

My daughter worries about many things that I do not, but there is one area where she is by far less fretful than I am. When it comes to making decisions she has no hesitations. She chooses, she is happy, and she moves on. I tend to weigh every option, consider every feature. Choose, then compare some more, test my psyche to see if I am just "settling", then make a decision, and usually walk away still wondering if I've chosen well. This shows up especially when we are shopping together.

"Which one would you like, sweetie?"
"Oh, this one, Mom!"
"Did you see this over here?"
"Oh, but I want this one, Mom..."

"Mom, can we go now?"
"I'm looking to see if there's anything I like better."
"But you already put that one in the cart."
"I know, I'm just looking..."

I've never thought of myself as much of a "shopper". I like to go in with a list, get the best thing I can find and get out, but compared to her I am shop-crazy. It's the "get the best thing I can" part that I'm hung up on. What if I miss out on a better deal or some new-and-improved product because I just grab the first suitable thing I see.

I'm not saying it would always be wise to follow my daughter's method. Some decisions must be carefully weighed. There are choices that require careful consideration and thoughtful reflection. There are other choices, however, that should be quite straightforward that I fret over instead. I suppose one characteristic of wisdom is being able to discern whether the decision you are facing is so critical or not. Really how many critical decisions do most of us make during a guess is not many.

Monday, February 14, 2011

Spread the Love

It is Valentine's Day (at least for another 15 minutes here on the West Coast) and although I know there are those who discount the day as a "Hallmark" created holiday, who can argue with a day to really set aside some time to let the special people in our lives know that we love them? It's pretty easy to avoid the commercialism and just focus on the love. These are some things our family did this year...

  • Love God. It's a command, the Shema, which devoted Jews still give special honor to in their homes. It is the fundamental Love that makes all other love possible:
Hear, O Israel: The LORD our God, the LORD is one. Love the LORD your God with all your heart and with all your soul and with all your strength. These commandments that I give you today are to be upon your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. Tie them as symbols on your hands and bind them on your foreheads. Write them on the doorframes of your houses and on your gates. Deuteronomy 6:4-9 (NIV, emphasis mine)
There are so many ways to express love to God, but I think one of the most important things commanded in this verse is to make your faith in God evident to your children. Our faith is not simply something that drives us to church on Sunday, it should be so ingrained in our actions, words, thoughts, and motives that our children see it and experience it every day in tangible ways.

  • Love your helpmate. I wrote a post a while back about how I try to do this. Today my husband and I got creative and instead of going out for dinner we went out for brunch. It happened that his work schedule and my volunteering allowed us an hour this morning to visit a new-ish local cafe and enjoy some one-on-one time without having to pay a babysitter since the kids were all at school or preschool. These times are so rare for us that it almost doesn't matter what we talk about, it helps us refocus and reunite our efforts as a couple to be supportive and have a common vision. Thinking just a little outside the box made it possible today.
  • Love yourself.  I suppose the debate will always rage whether there is truly a command to love yourself...but for any parent, and especially those of us who parent a child with special needs, it doesn't matter if it's a commandment - it's a necessity, and one that we often postpone or neglect altogether. I wrote a post about this, too. I've been spending more energy on myself lately, and trying to find ways to do it that don't take extra time away from my children and other duties. I am walking more (one side benefit of moving back to our neighborhood schools), taking time for a shower more often (though not perhaps as often as I'd like), and trying to make sure that I'm drinking lots of fluids if not water. These are small things, but they're making a difference for me - boosting my energy level and keeping me healthier for the long haul.
  •  Love your children. Today I made valentine's cards for my husband and for each of my kids. It didn't take very much time, but I hope it will be a long-standing tradition and one that will eventually mean a lot to my children. I'm not a super-gushy-snuggly-mom type. I try to tell and show my kids every day that I love them. These cards are just a tangible reminder of my love. I took especial care with my oldest daughter's card. I made a heart surrounded by a rainbow, a new obsession of hers. I wrote:
I love how hard you work to learn and to help. I love how you love rainbows. I am so  proud of you! Most of all I love you because you are you!
 I tried to use simple language and my best handwriting so that she could read it all herself (a skill she is becoming increasingly confident in) and I hope the words will go deep into her sense of self-worth.
  •  Love others. As part of a service project in Sunday School we decided to make Valentine's cards for some residents in an assisted living community not far from our church. We spent time each Sunday during Sunday School making cards, but also brought some home and worked on them during spare moments - while watching TV or waiting for dinner to get ready. With help from friends we made 80 valentines and delivered them Sunday after church. The staff was going to hand them out today. I'm sure many of the residents won't get many other valentines, and I hope the small gesture will remind them that people care and more importantly that God cares.
How will you spread the love this year?

Saturday, February 12, 2011

Lennox Gastaut Syndrome

I have to admit I had a hard time putting this post together. This sounds like a particularly complicated and devastating disorder - one that saps vitality from children who may otherwise seem healthy and whole. I start most of these posts from very little personal knowledge, so they require a fair amount of research. I need to be as accurate as possible without copying verbatim from the resources I've looked at, and I try to be sensitive to parents, caregivers and individuals who may be affected by the conditions I'm learning about. All of that put together meant this post was tough and therefore late, but I hope will still be interesting and useful to you. 

I had never heard of Lennox Gastaut Syndrome (LGS) until I saw another special needs parent's post about her child on a discussion board I belong to. As usual I was curious to know what is involved with this condition, and started my research. There is a lot to learn. LGS is a form of pediatric-onset epilepsy that can be quite severe. Fortunately it is fairly rare, occurring in 1-4% of pediatric epilepsy patients. One devastating effect of this disorder is that it usually begins between the ages of 2-6 years and the child may be typically developing prior to having their first seizure. With each seizure the child may regress, gradually losing skills. Even cognitive function may be affected. LGS generally causes various types of seizures (the seizure type may change as the child gets older) and often the seizures cannot be controlled with medication.

Besides the obvious impact of epileptic seizures, individuals with LGS often exhibit behavioral challenges, personality disturbances, mood swings, poor social skills, attention seeking behavior, and challenges understanding information. These changes may be brought on as side-effects of the seizures or of the medications used to control seizures.

Sometimes there is no known root cause of LGS, but often there is evidence of brain injury due to lack of oxygen during pregnancy or birth, an infection (like meningitis), or congenital brain malformation.

Because LGS seizures are often not controlled by medications, alternative treatments are often used. Among these treatment options are:
  • ketogenic diet -  a high fat, low carbohydrate diet used to force the body to burn more fat than sugar. The diet is known to help reduce seizure rates in children with some forms of epilepsy. There is a modified Atkins diet being studied for use in adults.
  • vagus nerve stimulation therapy - this involves implanting a device under the arm or in the chest that sends electrical impulses to the vagus nerve, which in turn helps the brain regulate electrical signals to help control seizures. The device can be activated with a magnet to prevent or control a seizure during the event. This sounds to me like a pacemaker for the brain.
  • surgery - there are several surgical options, but these are considered as a last resort, usually, and will only be attempted if critical brain functions will not be affected.

There are some things you can do to help advocate for individuals with LGS and other forms of epilepsy.
  • Learn more and help spread the word. There is a wealth of information available at the LGS Foundation.
  • The LGS Foundation accepts donations to help fund research and to help support families affected by LGS.
  • The 5th Annual Walk for Epilepsy will be held on March 27, 2011 in Washington, D.C. Click here for more details.
  • Even if you can't make it to Washington D.C. on March 26 (the day before the walk), consider wearing purple and if someone asks you why tell them it is to raise awareness for epilepsy.

For more information check out these sites:

Wednesday, February 9, 2011

Book Review - Whole Body Listening Larry at Home!

I have some pretty cool friends. The other day one of my cool friends gave our family this book. I think it will be good for our whole family. If there is one thing I get most frustrated about with my kids it is that they "don't listen" to me. Sometimes, I have to admit, I'm the one who is not listening. This sweet book talks about how to use every part of your body (not just your eardrums) to listen. It turns out that your eyes, your mouth, body (torso), hands, feet, brain and heart are all involved in truly listening to another person. While my kids are often not listening with their mouths, hands, and feet (generally at least one of them is making noise with at least one of these) I am more likely to be not listening with my brain (multi-tasking) or with my heart (ouch!) This simple story walks through the parts one at a time with socially savvy Larry helping his sister, Lucy, learn how leaving out any of the parts leaves other people (parents, siblings and peers) feeling frustrated and unloved. There are several things about this book that I love:
  • The text is simple and presented in rhyme to add interest. In addition to narration that makes the key points, the characters words and thoughts are often presented in speech and thought bubbles. The thought bubbles are especially useful for helping children understand what the characters are feeling.
  • The facial expressions of the characters are also very clear and will add to opportunities to discuss how each character is feeling when Lucy is not listening.
  • Toward the end of the story there is a cartoon list of each body part so you can talk about what it means to listen with your eyes (looking at the person who is talking) or with your feet (sitting or standing quietly).
  • The book shows Lucy being successful in the end and how everyone feels when she is listening - So Good!
  • At the end of the book there is a list of suggested activities to supplement the story, and two visuals that can be used in the activities.
Whole Body Listening Larry is published by Think Social Publishing and is based on principles developed by Michelle G. Winner in her work on Social Thinking. I have met one of the authors, Elizabeth Sautter, as she is the co-director of a program my daughter attended last Summer for social skills support. I recognized many of the concepts in the book from similar concepts presented in the social skills curriculum, so I know it will connect with my daughter, too.

Soon they'll be releasing "Whole Body Listening Larry at School!" which will be a great tool for teachers!

Friday, February 4, 2011

Sweet Memories

I made a cake yesterday that carries a lot of nostalgia with it - cherry chocolate cake with chocolate glaze. If memory serves, my mom learned to make it from our "artificial" grandma, a dear friend who often stood in for our biological grandparents who lived far away. Just remembering her makes the cake a little sweeter. It was a cake that my mom made fairly often, and one that my brother and I both requested for our birthdays. It is still one of my brother's favorite cakes. I was looking for a sheet cake to take to our weekly Bible study last night and came across a similar recipe in my cake book. I couldn't resist making it. All of the memories bound up in that recipe - I didn't even consider a different cake.

I made the cake while my daughter was at school, but still needed to frost it when I went to pick her up from school. This was putting some time pressure on me because the glaze needs to be poured hot on top of the warm cake for it all to turn out just right. There is always transition time when I pick my daughter up from school. She needs time to switch from school mode to home mode; teacher interaction to mommy interaction. Sometimes she wants to play on the playground. Sometimes she wants to show me something in her classroom. I've learned not to rush her because it just makes the transition harder, but there are times, like yesterday, when the transition time doesn't line up well with my agenda. My agenda has to be shoved aside. Yesterday we needed time to look at the newest class pets - two cute little mice (yes, Mom - mice!) and look at a couple of projects my daughter was so proud of. Toward the beginning I told my daughter that we would need to go straight home after we looked at the mice because I was in the middle of making a cake. She likes cake and I think this motivated her to make the transition shorter and more easily than if my agenda was something she totally wasn't interested vegetables or something.

As we were walking home she wanted to know more about this cake. What kind was it? Why did I want to make that cake? I tried to explain to her how it reminded me of my family and good memories, and although she later repeated this information verbatim to her father and our Bible study friends, I don't think she ever understood why this was an important reason to make this cake. I'm kind of fascinated by her reaction. For one thing, my daughter has an excellent long term memory. As often occurs with individuals affected by autism, she can remember details and events that I have long forgotten about. She remembers (and has asked me to go buy) a toy that she saw in a toy store when she was three years old (she is now seven.) We went there once, and she remembers this toy. She remembers children from Kindergarten and preschool that we haven't seen for months or years. She remembers their names and where they live, and probably anything else they told her. I have to be careful what I say around her because chances are she will remember it and may say it to the wrong person at the wrong time. There is no lack of memory skill in her disregard for nostalgia. I think she probably even experiences nostalgia at some level. She chose certain events and details of her birthday party because "that's what we did last year" and evidently she remembered it fondly...or is that just her love of routine coming into play...or is there a deeper connection between "routine" and "nostalgia." Still, she couldn't make the connection between memories, good feelings surrounding those memories, and how those feelings might direct one's decisions. Or perhaps she just couldn't empathize with my process.

All of this goes to remind me how important good memories are and how we should try to hold onto them and celebrate them whenever we can. I certainly want to build good memories into my children's lives. Will they remember cherry chocolate cake and choose to make it for their kids some day? I hope so.

By the way, that cake was JUST as good as the way I remember it. There are not very many things one remembers from childhood that one can say that about. I was also relieved that after all my raving about this cake my daughter liked it to and asked for a second piece. I thought I'd include the recipe here, in case you want to try and make some sweet memories yourself...enjoy!

Cherry Chocolate Cake with Chocolate Glaze

  • Chocolate or Devil's Food cake mix (with or without pudding in the mix)
  • 2 eggs
  • 1 teaspoon almond extract
  • 1 can of cherry pie filling
Preheat oven to 350 degrees. Mix all of the ingredients together using an electric mixer until well combined (2-3 minutes.) [If you want large pieces of cherry in your cake then combine the first three ingredients first and fold in the pie filling afterward.] Grease a 9x13 sheet cake pan. Pour the batter into the prepared pan. Bake 30-35 minutes or until a toothpick inserted in the center comes out clean.

  • 1 cup sugar
  • 1/3 cup butter
  • 1/3 cup milk
  • 1 cup semi-sweet chocolate chips
While cake is cooling slightly, mix sugar, butter, and milk together in a saucepan. Stir constantly. Bring to a boil and keep boiling for 1 minute. Remove from heat and add chocolate chips with stirring. When all chips have melted pour the warm glaze over the still warm cake to completely cover the cake. Don't forget to lick the spoon!


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