Wednesday, December 29, 2010

Movie Review - Race to Nowhere

It's past my bedtime, and I haven't finished reading the book that I wanted to review next. So...I thought I would re-post a review from way back when not so many people (well even fewer than now) were reading Simple Life. My first review ever is posted below. Since writing this the film has been released and is now called Race to Nowhere. I have not seen the final version yet. You can look for a screening near you here. I would love to hear comments from anyone who has seen the movie. With all the debate about education these days, this movie takes a different tack...

I attended an advance screening of a film this evening hosted by our local library and learning center, and the film's producer (Reel Link Films). The film's maker, Vicki Abeles, lives in our area and has travelled across the country to gather interviews for the film. The film is called "Slipping Behind" and it is about the pressures on youth, particularly high school students, but also as young as 3rd grade, to excel at school, in sports, in the arts, and in other extracurricular activities. Among the shocking content I heard tonight:
  • Applause for a 15 hour/week limit on high school sports commitment (n.b. this is still more than 2 hours/day on top of school work)
  • Success is currently thought of as constant work, and being good at everything.
  • In the 1940s high school students did 3-4 hours/week of homework; now it is more like 3-4 hours/day.
  • 80% of students admit to cheating in some form because they don't feel they can do all of the work on their own. This is often viewed as "borrowing" someone's work.
  • Adolescents need 9-11 hours of sleep each night. Many high school students are getting only 4-5 hours of sleep each night.
  • What might be an escape from the stress of school - sports, music, theater, etc. often turns into a new form of stress as the competition levels increase or when the student feels they cannot do something they love because they don't have time for it.
What drove me to attend this meeting is the nagging feeling that it spells disaster for children with special needs and those at risk if even the brightest and best are overwhelmed by the current atmosphere of pressure-cooker achievement. In the end the film questions whether we're even teaching youth the right skills when in the work force they will succeed most by being flexible, optimistic, enjoying their work, and being able to work on a team. We are failing ourselves and our children by putting pressure on GPAs and test scores because the best conceptual learning does not occur under pressure. It happens with real world applications and time for exploration. If students who learn things readily and need only a modicum of discipline to focus on required tasks are struggling to succeed, how will the child who struggles to read or write or whose attention drifts easily be able to even subsist?

I'll plan to write a response to these questions from a Biblical perspective in my next post. It would be easy to get wrapped up in fear with these ideas floating in my mind, but I will trust instead that God has the answer.

Part two Achievement
Part three Achievement
Part four Achievement

Friday, December 24, 2010

A New Christmas Story

The other day my daughter came and asked me if she could do "stickers on my computer." By this she means she wants to use the clip art in Word. As I was setting her up she said she wanted to use Jesus stickers because it is Christmas. So I typed "Jesus" in the clip art search box and left her to do her thing. She is getting pretty good with Word. She picked out four clip art pictures:

After picking them she needed a little help making them larger and then she wanted to print them out in color. Then she wanted to "read" the story to us, first Daddy, then me. Daddy came away from the story with a grin, so I knew this was going to be good. After she told me the story I asked her if we could write it down so I would be able to remember it. She wasn't too keen on this, but she did write down the first line herself and then dictated the others to me. So here for your reading pleasure is my daughter's Christmas story:
one Day There wus in egg in Jesus crADL.
(One day there was an egg in Jesus' cradle.)
The house was very dark.
All the animals came to sleep with Jesus.
The plus (the star) glowed in the dark; every night it did.
Jesus was fast asleep. He made those four lines. (by snoring)

There is so much about this story that I love, but I'll focus in on three of them.
  • It shows me how much she relies on visual cues to understand and therefore sometimes misinterprets what is going on. I'm pretty sure that's supposed to be baby Jesus' head in the manger, not an egg. She's right, though, it does look like an egg, and why shouldn't there be an egg in a stable manger? I suppose there were chickens around...I don't know.
  • I love the very real sense of personhood that she envisions for Jesus. No halos and meek and mild baby here. He's fast asleep and snoring away. Did you ever imagine Jesus snoring? I wonder if he did...
  • It's another misinterpretation, but very special in its own way. That's a crucifix, not the Christmas star (or a plus, for that matter), but we do often show the Christmas star in a cross shape, and why is that? Have you ever seen a star with a cross shape? I'm not too much of a star gazer, but I have never seen anything but brilliant points of light, twinkling to be sure, but pretty much circular if anything. Meanwhile, isn't it good to remember Easter even as we celebrate Christmas? His birthday wouldn't be so special if the whole purpose of His coming wasn't what it was. He came with the express purpose of paying the penalty of our sins by dying on a cross. He not only died but He also conquered death by coming back to life on Easter morning. How fabulous to be reminded even as He lays in a manger (cuddling His egg and snoring?) that He came to fill us with abundant life.
This story, by the way, is now wrapped and sitting next to Santa's cookies and milk. Yes, she made a story about Jesus to give to Santa. I love it.

Merry Christmas to you and all of those you love.
May you be blessed with His peace and goodwill this season.

Monday, December 20, 2010

Shopping with Kids

I don't know about you, but my list of errands about doubled this week. Extra shopping for gifts, special meals, parties, and trips to the post office mean more times out and about with kids in tow. I am fortunate that my husband works from home a couple of days a week, so if I time things properly I can run my errands while the little ones are having their afternoon nap, but there are days like today when I have several errands to run and I need to bring all of the kids with me. Over the last couple of years I've developed a method for keeping the chaos of these trips to a bearable level. I thought I'd share them here today just in time for the last minute holiday madness.

First, I think the most important thing is to know your kids' limits. I did three errands today, but two of them were short and within walking distance of each other. This minimized the number of trips in and out of the car and also provided some opportunity for linear movement (walking with a purpose). The other errand was a little on the long side, so I pulled out some extra ammunition (see below). I know which shopping cart my kids prefer, who likes to sit where, etc. Knowing all of these details helps me plan the trip and keep things positive, which is the overarching goal.

Second, you must be calm and organized. This is not the time to wander through the store tossing things into your basket randomly or pausing for several minutes to decide which pasta sauce you want this week. Make a list. Check it twice. Moving quickly but efficiently will help your kids stay nice. I actually have a road map that I follow through the store - starting at the produce, working my way through the middle aisles, stopping at the meat counter, then hitting the dairy and bread aisle before check out. My kids know this pattern, so they know when we get to the dairy aisle that we're almost done. The routine keeps us all on task. I even mark the items on my list according to which section they're in so before I leave each section I'm sure I've gotten everything from there.

Third, expect it to take longer and expect your children to get bored. When I am able to shop solo I can get in and out of the store with a whole week's worth of groceries in less than 45 minutes (if I have to) but that same list takes me well over an hour with the kids in tow. The cart we use is bigger and harder to steer. There are pauses to visit the bathroom or to issue reminders. It is just slower, and I think that is fine in some ways. The slow but steady pace can keep everyone more regulated. However, it's good to plan some distractions along the way to make the time pass. I bring a little snack from home for everyone. Everyone can choose a small toy to bring along. Our grocery store has "kiddie carts" with a car at the front that two kids can sit in - each with their OWN steering wheel. We rearrange seating sometimes so all three kids can have a turn "driving". I offer my older daughter the opportunity to help by choosing fruits or vegetables, crossing things off the list, putting produce in bags, or doing some heavy work by putting jugs of milk or juice in the cart. This all keeps her engaged, busy, and regulated.

Fourth, I am not above a PROPERLY executed bribe. I know if my grocery list has more than 30 items on it that it's going to be challenging to keep the kids all behaving well the whole time without some reward in sight. So, before we leave the house I choose a small treat (today it was one chocolate kiss per child) and hide it in my purse. Then I prime the kids: "We need to go to the meat market, the post office, and the grocery store. It might be a long trip. If you can follow our rules the whole time that we are gone I have a little treat for you." It's important that the expectations are made clear when the reward is offered...this is TOTALLY different than offering a kid a treat in the middle of a meltdown to try to get them back on track. Using treats to re-regulate from the middle of a tantrum just reinforces negative behavior. Using treats to reward good behavior when that is what has been promised builds trust, keeps positive behavior as the goal, and rewards children for reaching our expectations. I also reserve this tool for those particularly challenging errands like today when my grocery list was almost half again its usual length.

I'd love to hear any additional ideas you use when shopping with your kids. I still have several shopping trips to go this week...

Thursday, December 16, 2010

All I Want for Christmas...

Today, I thought I'd join the Special Needs Blog Hop. This blog carnival happens most Thursdays, though this is the last one for 2010. Hopefully I'm linking up correctly. Seems like each of these works a little differently, and I'm still learning!

Anyway, the theme for this week is "What I Want For Christmas." I won't try to get around it, there's a long wish list in my head. Free babysitting for a year comes to mind...or housecleaning...either way I'd be happy. We could use a new car, a new T.V, new shoes, and new bikes for everyone. There's no way most of that's going to happen. The new shoes we might be able to take a swing at. This year has been tighter than ever money-wise, and I've been calling it a "skinny" Christmas - just in my own head until writing it down here. Bearing in mind the circumstances of the majority of the world we are still in the lap of luxury, but for us it is on the modest side.

However, my daughter is becoming more and more generous. I have written before about how she loves to give gifts. It is really a true mark of her personality. She simply enjoys giving to other people. The gifts are sometimes a little odd, but they come from a generous spirit. Today I told her that I was packing up some gifts for her cousins for Christmas and she immediately wanted to give them something, too. Unprompted she said she would think about what she could give them. I thought she would make something since she doesn't really have any money and we weren't going shopping again anyway. She found some gifts (don't want to ruin the surprise) and then insisted on wrapping them herself.

What I really want for Christmas is to stir up this same generous spirit in myself. I don't want our skinny wallets to steal the joy of giving from me. I don't want to hold onto things with grasping fearful fingers. Instead I want to give freely knowing that it is just one more way I can be more as God intended me to be. He gave us this example:
He who did not spare his own Son, but gave him up for us all - how will he not also, along with him, graciously give us all things?.. Romans 8:32a (NIV)
So for Christmas I don't so much want to receive as to truly give.

What do you want for Christmas?

Sunday, December 12, 2010

Sunday Digest 26

We've had busy days over here for several days in a row. I have a feeling that will continue through the next few weeks as the holidays continue to roll through us...take a minute to get inspired along the way.

1) My fellow 5 Minutes for Special Needs contributor, Lee, posted this piece about parent advocacy that pretty much summarizes my own philosophy on the subject. It takes a special amount of effort to work with schools and other agencies that provide services. You have to stand up, and get busy, without being combative. It's a fine line to walk.

2) Every Mom needs to hear thank you...without prompting...but we don't always get it from our kids. When you need to hear it, read this. Your kids would say this...really!

3) One of my favorite new blogs to follow is Autism and Oughtisms. This mom had a great voice, and is particularly good at clearing up some common misconceptions about autism. This piece addresses the misconception that individuals with autism always have above average intelligence. Like many pieces of autism, intelligence ranges over a full spectrum.

4) Living in California, it's not often too cold to swing, but it is sometimes too I'll be trying out this move with my daughter soon, I'm sure. Thanks for the tip, Our Journey Thru Autism.

5) During days like I've had for the last week, it is hard to slow down and catch every opportunity. This post from InCourage is a good reminder that we need to be present in everything that we are doing. I have a feeling I'll need the reminder for some weeks to come.

Saturday, December 11, 2010


As a follow up to my earlier post on dyslexia, I thought I would let you all know about it's lesser known cousin, dyscalculia. As dyslexia is to written words, letters, and reading; dyscalculia is to numbers, both for arithmetic and sequences like phone numbers and other codes. The textbook definition of dyscalculia covers any number of learning disabilities related to recognizing, writing, and manipulating numbers in mathematical functions. For a more personal perspective, check out this post.

If this sounds like a simple math problem, dyscalculia can be related to language disorders and visual spatial processing. The problems can stem from early childhood with difficulties in sorting, recognizing numerals, matching numbers with amounts, and comparing objects in terms of size or length. Older children may be challenged by learning math functions and remembering what various symbols mean or copying from textbooks to their own paper. If basic math functions cause difficulty, older students may be challenged by advanced mathematics involving several steps and more abstract concepts. Math-related activities such as remembering the sequences of numbers (codes, phone numbers, addresses, etc,) understanding time flow and schedules, organization skills, games of strategy, and  sense of direction may also be challenging.

Due to the wide variety of learning disabilities described by this term, a full set of mathematical assessments should be used to determine each individual's ability, level of understanding, strengths and weaknesses. Specific strategies can then be used to help the individual learn each skill more effectively.

To learn more about dyscalculia, check out LD Online or The Dyscalculia Forum.

Wednesday, December 8, 2010

Book Review - Santa's Favorite Story

Santa's Favorite Story: Santa Tells the Story of the First ChristmasI know some families don't like to mix Santa with their Christmas celebrations. Some parents only want to focus their kids' short attention spans on the true story of Christmas, and the real reason that we celebrate, the birth of Jesus.

I grew up in a family that was able to have a lot of fun with Santa, while still always keeping Jesus' birth at the primary focus of our celebrations. We sat on Santa's lap (at an embarrassingly old age, even, for me). I remember driving around on Christmas Eve and teasing each other that the red warning lights on the radio towers  were really Rudolph's nose. I also remember every year for quite a while trying to devise plans to catch my parents in the act of playing Santa...and never succeeding because my brother would always take the first watch. With all of this fun, my favorite parts of Christmas were attending the candlelight Christmas Eve service at church, singing Christmas carols about Jesus' birth, and setting up our nativity scene. There was never any doubt about what Christmas was all about. I am striving to have this same focus and fun with my kids as they grow. Last year we made a cake for Jesus' Birthday. This year we've started making advent paper chains with lines from this poem on each link. I read these lines:

It isn't the tinsel,
The wrapping or things,
That make me feel happy and
Make my heart sing.
The reason is simple...

to my daughter and asked her what the reason is and she said, "Because it is Jesus' Birthday!" She knows...but she is still excited to sit on Santa's lap again this year.

I guess all of this is just introduction to say how much I like the idea of Santa's Favorite Story. It tells the story of some woodland animals who find Santa taking a cat nap one snowy afternoon before Christmas Eve. They are worried that his fatigue will spell the end of Christmas, and Santa assures them that Christmas is not really about him. Then he tells them the "real story" of Christmas, how Jesus was born in Bethlehem and laid in a manger, where some shepherds found Him and came to worship. The animals all learn that Jesus gave us the greatest gift by coming as a baby that first Christmas night, and Santa gains fresh energy to carry out his duties on Christmas Eve, reminded of the true spirit of Christmas himself. I love the story line and the artwork in the book. I think the message is simple and that any child will understand that Christmas is all about Jesus' birth.

My one frustration is that the story of Jesus' birth as related in Santa's Favorite Story isn't quite aligned with the accounts in the Gospels (especially Luke 2). The shepherds hear "a voice" and follow a star to Bethlehem rather than seeing a choir of angels who instruct them to go there and find Jesus in a manger. Maybe Santa's sleepy state makes him roll the shepherds and wise men into one? I don't just seems to me that if Santa is going to tell the animals the true story of Christmas it might as well be the True Story. Nonetheless it is a fun take on blending the fun of Santa with the true reasons we celebrate Christmas.
What do you think? How does your family handle this aspect of Christmas?

Friday, December 3, 2010


Motivation is such an interesting force in our lives. What gets us moving? What helps us get through the hard things we really don't want to do? I have been noticing this week some very odd things that will get my daughter motivated to work through transitions, in particular.

Getting into the car is tough, for some reason especially if we're going to church, regardless of the reason for the trip. Maybe, like me, she dreads the traffic jam that we often encounter on the way. I don't think it's anything against church specifically. She will be "all ready" to go to Sunday School, except for putting on her shoes and getting in the van. We even make the order of these two steps up to her, but she suddenly hits a snag and won't  want to go. I've started asking her before she gets her shoes on, and before she starts to protest if she wants a piece of gum. Of course she does. "Go get in the van, and I'll bring you one." Off she runs to get her shoes and get in the van. I don't even have to actually connect the reward to the behavior. (Gum, by the way, counts as oral-motor input, OT bonus!)

The other day we had a similar challenge right before school. She suddenly did not want to go. I found this a little odd (and worrisome) since usually she is perfectly happy to go to school. Luckily the day before she had been quite excited to show me the new classroom job chart. It is very similar to what she had in Kindergarten, and what we use from time to time at home. Her teacher had given her the job of feeding the fish in the class aquarium. So when she balked at going to school and asked why she needed to go, I said, "So you can feed the fish, remember?" Suddenly she was more than happy to go to school again.

Dinner time has been a challenge lately, too, for some reason. She'll seem excited about what we're having for dinner, but when it comes time to sit at the table, no dice. The other night when she was saying she wasn't ever going to eat dinner I took a moment to ponder. Having observed these earlier incidents I tried to think of something that would motivate her to get to the table. We were having stew, and I had put the kids' bowls on the table already. Knowing one of these bowls, the bright pink one, is her favorite, I said, "Well, I guess if you're not eating dinner I can give the pink bowl to your sister, then..." Wow, did that get her to the table!

Gum, fish food, the pink bowl...

I have been pondering what this means for me, too. What gets me moving? What helps me get through the hard things? I'm afraid for myself I often put out the stick rather than the carrot. "If I don't get this done then tomorrow will be a disaster"-kind of thinking rather than "Won't it be nice to do a good job and finish this while I have time." I'm going to try to look for the rewards a little more. I know they're out there, though they may be not so obvious.

What gets you moving?

Monday, November 29, 2010

Finding Empathy for your Child

This may not be the most "practical" of my practical tips, but it is important, and it is fresh in my brain not to mention begging to be redeemed, so here goes...

This afternoon I set out on my weekly adventure to run errands, this time accompanied by my oldest daughter. We have a nice little errand routine that has made it almost pleasant, though exceedingly slow, to run errands. Today we needed to visit the library (to return a book at the drive through book drop), the bank, and the grocery store. Sounds simple enough, right?

As I was preparing to turn left into the library book drop lane I noticed an elderly woman driving the opposite direction and decided that though she was proceeding slowly I needed to yield right of way. It's a tight turn and I didn't want to cut her off. I stopped in my lane, so I had plenty of time to see her equally elderly passenger and figured they were having a nice chat as they putted along. As I negotiated the turn into the library I noticed another older woman pedestrian hot on my trail on the passenger side of my van. She was close enough that I was a bit worried I might hit her while also trying to line up with the book drop. She tapped on my passenger side front window. I thought maybe she needed directions or was confused about where the entrance to the library is, so I rolled down that window, but she crossed right in front of my van(!) and came around to the driver's side window. By now I could see she was angry, but I rolled down my window and asked nicely if I could help her. She started yelling at me about stopping so long and letting my exhaust fumes get in her face. I sat there, fully aware that my daughter was hearing every word and watching every response on my part, hoping my face had an appropriate response, angry for the tongue lashing when I hadn't done anything wrong, trying to figure out what to say to make this irritating person leave so I could complete my errand. I said something to the effect of, "I'm sorry, ma'am, I didn't realize that had happened," and instead of accepting my apology or leaving in a huff the woman threatened to call the police next time it happened. (I was not aware that exhaust fumes had ACTUALLY been outlawed, YET.) She then proceeded to call me a crude name as she fumed (sorry, couldn't resist) off into the parking garage. I lamely yelled after her that she shouldn't swear in front of my daughter... (Oh, good comeback, me!)

As I then struggled to return my soon to be overdue video a kind pedestrian who had evidently witnessed the exchange offered to help me, but there wasn't anything she could do about it. I probably responded somewhat rudely to her out of my shock...and drove off in a fog to the bank. My daughter was peppering me with questions. Why did that woman yell at you? What did you not want her to say in front of me? Why should she not say that in front of me? What did you do? etc. etc. Fortunately my continued confusion, embarrassment and shock kept my answers short, to the point, and flat in effect. Somewhere in the middle of the produce aisle I could finally function without constantly thinking about this emotional attack from an absolute stranger. It still makes my stomach twitch just to recount it here.

Part of what helped me move beyond the nastiness of that moment, was a still small voice that said,
"Imagine how your daughter feels when you yell at her."
It gave some meaning to the experience. I've learned a lot in the last couple of years to help keep my temper under better control, but I still have my moments. I'm told that everyone does. It's been a while since someone older than me gave me a tongue lashing that they thought I deserved. No matter how undeserved it was in this instance, I imagine that my visceral responses were fairly similar to what my daughter, and any child, must experience when they're being loudly scolded:
how do I make this person go away
loss of social functioning

There is one really significant difference in the experience. I have no idea who this woman is. Even though we live in a small town, I will likely never see her again (I can hope!) After all my processing it was pretty easy to brush off her opinion of my driving ability, and whatever else she chose to judge in me. When I yell at my kids, they have to live with me the rest of that moment, that day, and beyond. They value my opinion (a little I think) and some piece of their self-image is built upon my responses to them.

I wish I could say I'll never yell at my kids again...that is unrealistic. It did help me keep my cool as I handled bedtime solo tonight. I hope, however, that this experience will give me a little more empathy for what they are feeling when I'm angry with them and will modify my own responses. I would love to hear your thoughts in the comments below. How do you find empathy for your child?

Thursday, November 25, 2010

Learning About the Pilgrims

Part of the first grade curriculum in public schools where we live is learning about the history of the pilgrims at Plymouth Plantation (or Plimouth - I'm not sure if this is the original spelling, or if it is the creative spelling employed by first graders). In any case my daughter wished to tell us all about the things she has learned about the pilgrims and the Native Americans who helped them during their first year in the New World. According to my daughter's new-found knowledge:
  • There were 102 pilgrims who embarked on the Mayflower along with the few belongings they were able to bring with them.
  • They lived on-board the Mayflower for sixty days and sixty nights before reaching Plymouth.
  • More than half died from illness, and only 50 remained to settle the new land. My daughter says they died of sea-sickness, but I imagine there were many ailments that affected them.
  • Their first village burned down.
  • They lived in one room homes and nearly starved their first winter.
  • The Native Americans (Wapanogs, I think that is the correct spelling...) taught the pilgrims how to plant food, corn in particular, and how to hunt and fish.
  • To express their thanks to God for bringing them through one hard winter and for providing adequate food for their second winter they prepared a great feast with the Wapanogs, which we commemorate with our own feasts to this day, though I'm sure the foods are quite different.
There was one final point which we wanted to be sure our daughter understood. We asked her why the pilgrims had to get on the Mayflower in the first place. She told us that "The queen would not let them worship God the way they wanted to, so they got on the Mayflower to find a new land where they could worship God the way they wanted to." We are still thankful today for this wonderful freedom to worship God as we choose. Imagine the hardships that our forefathers endured to secure this freedom for us. The short list above is just what a child has been able to learn and keep in mind for the last few weeks. I'm sure there are innumerable other burdens they bore - difficulties in child birth, in leaving behind family and friends, in nursing their sick little ones in vain, and burying them on a distant cruel shore. They bore all of these costs for the freedom to worship. May we remember this high price and worship God today and every day, not just for what He  has given us, but for Himself and all that He is.

Wednesday, November 24, 2010

Preparing to be Thankful

My second post over at 5 Minutes for Special Needs. We are getting ready for Thanksgiving and giving thanks! Happy Thanksgiving to all of my faithful readers!

Saturday, November 20, 2010


After profiling several rare disorders I thought I should look at something that is quite common. According to some sources Dyslexia is the most common learning disability among children - it affects an individual's ability to read, write, spell and sometimes speak even though their cognitive abilities are average and there is no hearing or vision impairment to explain the difficulty. Dyslexia can be mild or severe and is a life-long condition with no cure. However, the symptoms may change over time, and many strategies and coping skills can be learned to overcome the challenges. I was told some time ago that children with speech and language delays are more likely to have challenges later with reading, so I've been on the look out for dyslexia in my daughter for quite a while. She is now almost seven, and she is reading, but still struggling somewhat. Her teacher assures me that she's on track and progressing. I decided I should educate myself a little and learn what exactly I should be watching for.

When I started researching for this post all I knew about dyslexia is the symptom of writing letters and numbers backward or mixing up the sequence of letters or digits when reading or writing. Reversing letters and numbers apparently is quite common until age seven or eight and then should diminish. Some other symptoms of dyslexia include:
  • disorganized writing
  • challenges remembering story elements even from favorites
  • difficulty with spatial relationships - both academic and athletic
  • confusion of left and right; may not use one hand dominantly
  • difficulty moving in rhythm with music
  • may not remember or understand oral instructions
  • following more than one command at a time is challenging
  • may struggle with verbal expression, at a loss for words even if they know what they want to say.
  • emotional difficulties may arise - withdrawal, depression, poor self-esteem
  • behavioral issues - social challenges, acting out, may appear lazy
Some of these symptoms of course overlap with other disorders, so it is important to pursue appropriate assessments in order to reach an accurate diagnosis. Evidently there is a whole list of tests and assessments that can be used to pinpoint the exact area of difficulty a student is having with their reading. Appropriate strategies and coping skills can then be taught to overcome that challenge.

There are actually three main causes of dyslexia:
1) Trauma induced dyslexia occurs after some accident or other injury affects the area of the brain that controls reading and writing. This is increasingly rare in our populations, probably thanks to the now widespread use of car seats and seat belts in vehicles, and helmets for bicycling, etc.

2) Primary dyslexia occurs from the congenital dysfunction of the cerebral cortex (left hemisphere) and is an inherited disorder that most commonly affects boys. This form does not change over time and often limits reading abilities to a fourth grade level.

3) Developmental dyslexia is thought to be caused by hormonal effects during early fetal development. This form is also more common in boys, but also diminishes as the individual matures.

Parents should consult with school staff if they suspect dyslexia is affecting their child's ability to learn. If the child already has an IEP their plan can be modified to specifically address this concern. If the student does not already have an IEP the school will likely begin by assembling a Student Study Team which includes relevant school staff and the parents. Within this team a strategy to assess and support the student's learning can be developed.

For more information about dyslexia:

MedicineNet article and discussion
Learning Disabilities Online

I also thought I would mention that a friend of mine, Janet Ann Collins, recently published a children's book where some of the main characters are affected by dyslexia. It's called Signs of Trouble. She posted the cover art on Facebook today, and I'm sure that influenced my choice of topic for this post!

Wednesday, November 17, 2010

CD Review - VeggieTales Sing-Alongs Rock-a-Bye Veggie

Rock-A-Bye Veggie
I have to admit, I was a bit skeptical when someone gave us this CD a few years back. I enjoy the VeggieTale shows, but had not heard any of the music, and I expected it to be somewhat like listening to Alvin and the Chipmunks - cute but eventually annoying. It may be that this is a particularly special case. I still haven't listened to any other VeggieTale CDs, but I actually enjoy this one a lot. The other day when my youngest daughter asked to listen to some music I voluntarily put on this CD. Really.

Part of the reason I like it is because the songs are ostensibly lullabies. The music is all really mellow and it shows when the kids listen to it. My children will dance to just about anything even remotely upbeat. (I am always fascinated by this since neither their father nor their mother enjoy dancing - we didn't even dance at our wedding. But I digress...) With the Veggies serenading us my children will play quietly and listen more closely to the songs they are most familiar with. When I find something that helps maintain a calm mood around our house, I like it!

I also like the selection of songs. Some of them are just classic lullabies, like Rock a Bye Baby, Brahm's Lullaby and All the Pretty Little Horses (my favorite!) However they've also included several "old" hymns like For the Beauty of the Earth, This is My Father's World, and Morning Has Broken. If you can get past the fact that you're listening to a singing tomato, or cucumber, or asparagus (which isn't too hard) there are even some pretty nice harmonies. There are some humorous verbal side notes and some really beautiful verses added to the classics.

After all of the songs play with lyrics there are "split-tracks" with just the instrumental versions. These, of course, are even more calming than the vocal versions.

In all it is a more refreshing and enjoyable musical experience than I could have imagined. Someday I hope it will be our entrance point to the movies which so far have been too complicated for my oldest daughter to understand. I think maybe I'll dig out the Christmas show soon and see if she gets it this year...

Some Exciting News

One of my favorite group blogs recently put out a call for new writers. I responded, and I was offered a slot. So every Wednesday I'll now be posting over at 5 Minutes for Special Needs. My first contribution "Doing the Best I Can" was published this afternoon. I'm so excited for this opportunity. It will probably mean some changes to my schedule here...which I'm still figuring out...but I will keep you posted on that front. Meanwhile, I hope you'll enjoy reading my posts and the other new contributors over there. I'll be posting my usual review here later today. See you soon!

Sunday, November 14, 2010

Sunday Digest 25

Thanksgiving is just around the corner. Next week we have our big pie and praise festival at our church. It almost snuck up on me this year. Usually I plan carefully which pie I'll be bringing. I always bring an alternative to pumpkin because I don't like pumpkin pie, and I know someone else will bring the pumpkin for everyone else who does like it. I's almost un-American to not like pumpkin pie. What can I say? Anyway, I'm finding myself with a lot to be thankful for. So much that I'm a beat or so behind where I need to be. Not so busy that I haven't had time to find you some good reads/listens on the internet. Read on in this SILVER (25th!) edition of the best of the rest...

1) We love fidgets, and this link (found via OUR Journey Thru Autism) has some good ideas for a fidget bag that is suitable for keeping in a school binder, and the fidgets to put into it. Children with sensory integration and self-regulation issues often have a hard time quieting their body for events like circle time, assemblies, waiting in line, and working quietly at their desk. Fidgets are usually small, interesting but not too stimulating (fine line here) objects that a student can keep in their hand to help them keep the rest of their body quiet. I kind of self-discovered this way back when I was in college and I was finding it hard to pay attention in some of my faster-paced, content-intensive classes. I made a bean bag, which I called my blob and I would hold it in one hand while I wrote with the other. My daughter responds well to fidgets and we used to carry a fidget bag just about everywhere we went. She still has one or two available at school when she needs them.

2) One of the reasons I re-started The Simple Life was to explore ideas of teaching matters of faith to children with special needs. I recently saw this excerpt of a speech by a Jewish Rabbi. I think many of the ideas expressed here could be applied in other faiths, and I believe this is one of the upcoming challenges to churches, synagogues and other places of worship. We need to be prepared. Many parents that I've met don't feel like their special needs children are welcome in their house of worship...and that is beyond sad in my opinion.

3) This story from Eren over at Steady Mom will help you feel good about how our children, of all abilities, can inspire and teach us if we let them. Technically no special needs involved here, but talk about underdogs.

4) My 5th grade French teacher posted a link to this interview on Facebook. I love how Facebook reconnects us with so many different influences...The interview on NPR is with a woman, Heather Sellers, who is affected by "face blindness" - basically she has no memory of what people's faces look like, even people she knows well like her husband and colleagues at work. You can listen to the interview, and read an excerpt from her book "You Don't Look Like Anyone I Know". This is one more reminder to me of how fragile our brains really are...and I can't help but wonder if this disorder is somehow related to the misfirings of autism that lead to similar difficulties with reading social cues like facial expressions.

5) Tammy and Parker are hosting a Boardmaker Studio giveaway over at 5 Minutes for Special I've not used Boardmaker personally, but I know it is widely used for PECS (picture exchange communication systems), visual schedules, social stories, and other visual aids. My kid seems to need pictures of her real life situation most of the time, so we're wearing out our digital camera, but Boardmaker can be a really useful tool. And they're GIVING it away...the giveaway is open until November 15, so you have ONE DAY LEFT to head over there and sign up...

So I am Thankful for fidgets, faith, children, faces, and giving. I am thankful for you, my faithful readers, and I wish you a very Happy Thanksgiving season!

Thursday, November 11, 2010

Make New Friends

My daughter has always enjoyed being around other people. I remember telling my mom when she was a baby that her happiest days were the days that we went out to do things with other people and her hardest days were the days that we stayed home alone. This "social intent" is an argument that some school staff have used to discount her autism diagnosis. However, her drive to be with others is not matched by good interaction skills. In fact at times her social skills regress to the level of her almost three-year-old siblings, though she is four years older.

A couple of years ago we visited a local playground. At that time my daughter needed so much support and supervision that I would only go to this playground because it is small, fenced and was entirely age-appropriate for the twins who were toddlers at this point. I didn't have to worry as much that one of them would wander off or try something beyond their skill level while I was busy navigating the world with their sister. On this particular day there was another little girl there approximately the same age as my daughter. They were both playing on the slide, but my daughter would sit at the top of the slide refusing to go down, or sit at the bottom preventing the other little girl from sliding. I coached her through each bumpy interaction, but I was starting to get concerned that we would need to cut our visit short to avoid an ugly confrontation. Somehow we all ended up on the bouncy "teeter-totter". This is not the old-fashioned teeter-totter that leaves one child suspended 4 feet in the air, but a "bouncy" ride for two to six children with bench-like seats on either end. My daughter was saying that she didn't want the other little girl to ride with us and I was encouraging her to share. I started to say something to the other little girl and realized that I didn't know her name, so I asked her for her name. She responded and asked, "What's her name?" referring to my daughter. I prompted my daughter to respond and she did. It was as if a light switch went on. Quite suddenly my daughter was willing to share the bouncy ride and the rest of our time at the park the two girls played together well, though of course I maintained my vigil. Later in similar situations I always tried to make sure that names were exchanged early to help avoid that particular stumbling block.

I'm remembering this story because of a dramatically different scenario that took place today. We visited a park that we have only been to a few times. It is the polar opposite of the safe little tot playground described above. It is large, open, and has equipment appropriate for a wide age range. In this setting I triangulate, basically keeping all three children in eye-shot, but staying closest to the one who seems most likely to need my assistance or supervision. Increasingly this is my son who pushes the envelope of his climbing skills to the edge of my intense anxiety zone. We started off easily enough with my oldest daughter happily swinging and not apt to run into any social problems...I think this may be one reason she likes swinging so much, besides the whole sensory thing. Several minutes later she told me she wanted to try the "zip line" - which is just a handle that hangs on a cable and slides back and forth when the child swings their legs. One can zip from one end to the other in one swing because it is the length of most monkey bars. I told her to go ahead and reminded her of some positive rules. She still hesitated. I finally realized there was another child on the zip line so I prompted my daughter to ask for a turn, and the other child very kindly relinquished and left the scene. Some time later I checked-in to tell her it was almost time to go and she was still playing on her own on the zip-line. Less than ten minutes later I came back with her siblings in tow and asked her to finish up when I noticed another little girl nearby. I asked if they were sharing and sure enough they each took a turn zipping back and forth. My daughter and this other little girl ran off to tell the other girl's parents something, then came back and played with the zip line a few more times. Just before we took our leave the other little girl asked my daughter's name, and she responded, and I flashed back about two years. I was sad that we needed to leave at this point. Somehow these girls had formed a little friendship over the zip-line even before having that critical data of each others' names. Unsupported, unprompted, unsupervised. I'll mark that as progress and remember it fondly next time we hit a social snag.

It is also a good reminder to me because unlike my daughter I'm pretty much an introvert. If left alone with a good book, my computer, and adequate food for the day, I can quite happily pass the time on my own. In fact that sounds like a slice of heaven at the moment. I can see in these brief interactions the value of even very short term friendship. Each person we meet is an opportunity to enjoy our experiences at a whole new level of pleasure. It is worth the effort to overcome the barriers that we put around ourselves and to learn to connect with those around us, even if we don't know their name. I find myself gaining new courage to approach people with simple small talk or comments about common ground. It is widening my experience of the world around me.

Monday, November 8, 2010

Table Matters

How can I describe what dinners at our house looked like just two short years ago? There were some dinners not unlike some of the best food fight scenes from your favorite 1980 teen flick. Picture bowls of tomato based stew flung off the kitchen island toward the living room (I have never been more glad for wood floors). Imagine musical chairs where only one person is walking around the chairs while the others provide the charming music of, "Sit down right now or..." You get the idea. Throw in two high-chair bound newly self-feeding babies, a worn out mama and a frustrated papa. Would you like to come over for dinner?

We still have our issues at dinner, but I'm glad to say that the food now stays on our dishes, except for legitimate spills, and we have regular (for us) conversations...where three children talk at the same time and two grown ups try to listen and maintain order, and wedge in some adult news when possible. It's a charmingly normal, if loud, family dinner.

What worked the magic? No magic here, folks, just some determined, consistent, calm, positive parenting under the tutelage of our mentors. There are some general guidelines:
  • Try to serve at least one thing that each child likes to eat.
  • Try to serve dinner as close to the same time each day as possible. (I fail at this sometimes, but at the beginning we were eating at 6:00 sharp every night.)
  • Parents are strategically placed between children wherever possible, though I can manage all three children solo now, if needed.
  • Don't plate the children's food (which we were doing previously). Instead parents control the food and serve "family-style" from the center of the table.
  • Key: When serving the children two questions are favored: 1) Where should I put your ___? and 2) Would you like a little or a lot? Sometimes for the latter question we ask a number or, if you're feeling really creative, a shape (e.g. for bread, square/rectangle/triangle, etc.)
  • Also Key: Re-phrase child's response as politely as possible as in: 1) Right here, please. and 2) A little, please. If the child replies with a polite form of their own initiative, praise them! "I like the way you said that!" or "Nice asking!" If you have re-phrased for them then wait for them to parrot the polite phrase before responding with the next question or by placing the food on their plate. The pause for politeness is so important...eventually they start initiating those polite phrases and it is just great!
  • If you give a child a choice about whether or not they want an item (which we do now from time to time) their responses should also be polite: Yes, please or No, thank you.
  • If the children ask for more of something this needs to be polite too: More ____, please, Mommy.
  • For a while (a couple of months seemed to do it for us) adult conversation is off-limits. Pretty much everything said should be about the food, or at least directed toward engaging the children in talking at a level that's appropriate for them. Now we like to ask about our favorite thing at school that day. These days we can edge in a sentence or two to each other, but we have to be careful not to get into extended discussions because it's very easy to upset the balance and lose the positive attention that the children are really craving during this time.
All of these questions, responses, and interactions begin to engage the children in polite and appropriate ways around sharing the food. With all of the positive attention and engagement it is easier for them to sit and eat. They enjoy feeling some sense of power over their food. They tend to actually eat more. There is still some general pickiness, especially in our younger set, so we've added a couple of soft rules. They need to try everything before they can have seconds of anything. If they don't like something, we're working on getting them to leave it on their plate (because this is the polite thing to do if you have tried something and don't like it). For some reason my kids like a clean plate one way or another, and if they don't like it they want to give it to someone else or do just about anything to get it off their plate...including eat it if Mommy insists that it stays on their plate. Well, it works sometimes. If I already know one of my kids doesn't like something (my boy refuses just about all pasta/noodles) then I don't give them much to begin with; just enough to try it if they are brave that day. And if they don't try that particular item I usually don't make them. No need to reinforce their dislikes with a negative experience. No dessert if they don't eat their protein and fruit or vegetable. That one is hard to enforce when two of the kids clean their plate and the third just wasn't hungry; and dessert is a big deal at our house, courtesy of Daddy's DNA. In that situation the non-eater gets a pretty boring dessert - a graham cracker instead of cookies from the jar.

This is what has worked for us, and it has only gotten better as the kids get older and more into our dinner routine. I'm not embarrassed to have them eat with us when we have company now, although I do sometimes feed them early if the company dinner time is far removed from our norm or if we have some specific adult conversation that needs to happen over the meal. In general dinner time is a happy time at our house now.

Credit where it is due: I learned about these and other techniques I am currently using with my daughter from two wonderful people, Clarissa Montanaro and Robin Hauge. Please contact them at clarissamontanaro-AT-gmail-DOT-com for more information.

Friday, November 5, 2010

Everybody Goes Surfin'...

Here's something to make you wish you lived in Southern California...unless you already do in which case you should head out to Dana Point, and specifically Doheny State Beach where volunteers from Best Day will be working with children with a variety of special needs to help them surf, body board, or kayak. November 13 and 14 for half of each day, children with a variety of challenges are invited on a first-come, first-served basis to work one on one with trained volunteers to enjoy the sand and surf. I can hear the Beach Boys harmonies in the background.

Best Day is an organization founded in 2008 by Max Montgomery and Brooks Lambert. They've already hosted nine similar events in New Jersey and Ventura, CA. Check out some photos of those events here.Their goal is to help children with special needs gain confidence and self-esteem through safe and fun adventures. The events are size-limited to ensure safety. They are also free to registered participants because Best Day is run by volunteers and funded through donations, grants, and sponsorships.

Want to get involved? Visit the Best Day website for more information.
  • Volunteer - older school children through senior citizens can all play a role in making this special event happen. Don't like the water? There are plenty of jobs for land-lovers. Check it out.
  • Donate or become a Sponsor to help keep these events free for the kids
  • Bring Best Day to your community
  • or Bring a kid November 13-14 to Doheny State Park, Dana Point, CA or one of the other upcoming events and join the fun

Let's go surfin' now...everybody's learnin' how...

Tuesday, November 2, 2010

The Race

I used to think of my life as a treadmill, running ever faster and threatening to throw me off the back end as seen on so many sitcoms. I'm trying to retool the imagery and consider it to be a race instead. This is very Biblical.

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart. - Hebrews 12:1-3 (NIV)

It's imagery brought to my attention often. I have several friends who are runners - triathletes, ironmen and women, even. One good friend just finished her first 5k race after exercising for the better part of a year, losing weight and feeling more and more assured of her ability, she signed up for a 5k race and finished it in 31 minutes with energy to spare (at least from the looks of her after picture). I have watched these friends in awe. How do they do it?

Then the other day someone I don't know very well, who really didn't even know the full story of what our family has been through in the last three or so years kind of made the connection for me. All she knew is that I have three kids, one older and a set of twins. She looked at me and said, "I'm just amazed that you do this, and you're here." I hope my face expressed my confusion as I said, "What? Do you think I should be crumbling to pieces any minute now?" I realized she was watching me with that same sense of awe...How does she do it? There's no magic here, I just do it. Nike style, I guess:

unhindered, persevering, eyes fixed

Today is perhaps not typical, but if it's not one thing it's another. Other than our recent vacation (which now seems like ancient history) the number of times in the last few years that I have sat around wondering what to do next are non-existent. There is always something to do, and usually several important things vying for my attention... Today, started off something like this:

7:00a - Wake up after sleeping poorly since 1:00a, listening to my poor little guy cough his way through a virus and then try to go back to sleep. I weigh the option of taking him in to see the pediatrician only to be told  "It's just a virus...there, there...go home." Decide it's worth it to be able to sleep better tonight.
7:10a - Wake up daughter and set timer for "snuggle time". Get breakfast ready for four people - not me...realizing that IF I get to eat breakfast it will be on the go.
7:25a - Ask Daddy to take daughter to school so I can go to doctor's earlier. He hits the shower. I start packing one snack and two lunches. Remind daughter to get dressed.
7:45a - Wake up twins and get them started on breakfast. Get daughter started on breakfast. Get dressed.
8:00a - Put shoes and coats on twins - leaving them in their jammies. Remind daughter to get shoes on. Make sure backpack is packed.
8:15a - Realize I'm going to be fighting school traffic. Herd twins to minivan. Herd husband and daughter to school. Drive alternate route that turns out to be probably worse than the first idea.
8:45a - Arrive at pediatrician. Miracle occurs and the boy coughs while we are there and doctor decides he needs albuterol treatment...
9:40a - Leave pediatrician armed with drug and nebulizer, realize I have 20 minutes to get home and prep for my next appointment...

Tired yet? We're not even through the first three hours. It goes on. Chiropractic appointment for me, then voting. Lunch time, nap time, school pick up, gymnastics, dishes, dinner, make muffins, bake pumpkin, search for errant paper unsuccessfully, bedtime for kids, finally time to work on my laptop or desk...

I am not writing this to boast, or to complain. There is nothing amazing about what I do. Via the web I've met parents of children with greater needs who do more with less resources, and they don't complain either. This is just what we do when we've decided to invest our lives in our offspring. I increasingly believe it is among the holiest of callings, this parenting thing.

Unhindered - For me this means keeping my thought life away from worry, complaining, and other forms of negativity. I try for a daily dose of worship. If I let myself give in to negative thoughts I find myself unable to run the race. I'll be winded on the sidelines before I even hit the starting line.

Persevering - Keep putting one foot in front of the other. Do it again, and again. This doesn't mean you don't take time to rest. I do. Then I get back up and get going again. The alternative just won't work.

Eyes fixed - This is the hard part for me. The author of Hebrews doesn't say, "eyes fixed on...your to do list, your kids, your wallet, or the people around you." Even the Biblical "cloud of witnesses," while encouraging, is not to be our focal point. The focus is Jesus. Why? Because He has already run the race and He is the best example of how to do it...unhindered, persevering, eyes fixed on the joy set before Him. The joy set before me is to hear Him say, "Well done."

That's why and how I'll keep running. Join the race!

This post is participating in the last ever Moms' 30-Minute Blog Challenge at Steady Mom. I'll miss the opportunity to connect with other bloggers this way. Thanks Jamie for hosting it for so long, and best wishes in your new endeavours.

Sunday, October 31, 2010

Batten Disease

You may remember in my post about Ralph's World I mentioned a benefit concert Ralph was doing to support Jasper Against Batten. I wanted to follow up on that post by learning a little more about Batten Disease, and thought I'd share what I learned with you. Batten Disease is named for Dr. Frederick Batten who first described the juvenile form of this disease in 1903, formally known as Neuronal Ceroid Lipofuscinosis (NCL). There are actually four types of Batten Disease, differentiated primarily by the age of onset. In all cases NCL or Batten Disease has a root cause in a genetic mutation that leads to inefficient waste removal from neurons (nerve cells) in the brain. As the waste builds up the neurons begin to fail leading to seizures and progressive loss of sight, motor skills, and cognitive abilities. Eventually all forms of the disease are fatal. The earlier degeneration begins the shorter the expected life span. So in Infantile NCL which begins between ages six months to two years, the child will usually not survive beyond early childhood. Meanwhile, adult onset NCL, which is extremely rare, begins before age 40 and results in a somewhat shortened lifespan. Late Infantile Batten begins between ages 2-4 years; Juvenile Batten begins between the ages of 5-8. All forms of the disease are rare because in order to contract the disease a child must inherit two recessive genes, one from each parent. Each offspring of such a couple has a 1:4 chance of contracting the disease and a 1:2 chance of becoming a carrier (having one copy of the recessive gene).

In short, this is one of those devastating diseases that is hidden in the maze of our DNA, is not evident prenatally, is degenerative, fatal, and rare. The intersection of these characteristics results in an "orphan" disease, meaning there is little research into the cause, possible treatments or final cure. Big pharmaceutical companies, sadly but understandably, put their efforts toward diseases that have big markets: diabetes, cholesterol, cancer, and the like. That leaves smaller laboratories, usually government agencies or academic institutions to pursue evils like Batten.

The family that started Jasper Against Batten are real heroes in this fight. Their son, Jasper, has Late Infantile Batten, and aside from the energy they have put into their own personal fight, they started a foundation to raise money to support research of treatments for all forms of NCL. Their story reminds me of the Lorenzo's Oil story and again why we should advocate and that each life is sacred and powerful.

Wednesday, October 27, 2010

DVD review - Scholastic Treasury of 100 Storybook Classics

Harold and the Purple Crayon... and More Harold Stories (Scholastic Video Collection) [VHS]
In retrospect this set of DVDs was one of the best Christmas gifts we received last year. Thanks to my dear Sister-in-Law we now have hours of enjoyable classic children's literature on video. Less than two months of shopping days left, you know, so if you're looking for a good gift idea...I think the link above is the set we have, but if not it is similar enough to be equally well received.

We try not to let the children watch "a lot" of "TV". When we do it is always pre-recorded so that it comes to a definite end and there's less inclination to watch "just one more show." Now that my littles are in pre-school three days a week, we are watching even less, but it is still my go to when it's time to make dinner, or work on some project and the children are bouncing off the walls and each other. We also have a DVD player in our mini-van, and while we aren't doing much driving these days, when we do drive it is usually a 20 minute or so jaunt one way. Honestly I'd rather not break out the DVD player except for longer trips, but I have to admit that sometimes these family drives are an opportunity for adult conversation in front while the kids watch a video in the back. We also usually try to stick to "educational" shows...those that encourage some "interaction" etc, etc. Still with all of these conditions, boundaries, values and limits I feel nagging guilt sometimes that I am letting them have too much screen time.

Enter the Scholastic Treasury DVD set in our video library...and the guilt is considerably eased. Yes they are still watching "TV" but they are also being introduced to a lot of wonderful classic children's literature. Harold, as pictured above, with his magic purple crayon; Max, King of all Wild Things; George the Monkey; and Harry the Dirty Dog are just a few of the wonderful characters my children have met through these videos. Sometimes my daughter will see the book afterward at school or in the library and will be interested in reading it because she knows the story from the video. The stories are narrated and sometimes set to music. The images are often charming stills taken from the original books. The text of the story shows up in subtitles and changes color as the story is read so it encourages reading skills. They are pleasant for me to listen to. I've reacquainted myself with stories from my own childhood like "Why Mosquitoes Buzz in People's Ears." (remember that one, Chris?) We keep several of these in the rotation on the DVD player in the minivan, and the stories are a good length for a longish errand. Many of these have become favorites. My daughter is particularly enchanted with the one that has primarily dog stories on it. I believe it is part of her ammunition to weaken my stance on waiting a few more years before we add a canine to our chaos. They appeal also to my little preschoolers, so in our experience 2.5 years and up find these quite fun.

The only odd thing about these is they interfere with the digital clock on the minivan DVD player. Normally after you start playing a DVD the time counter for the show is displayed for several seconds and then the display changes to the clock. With these DVDs unless you start from the beginning menu each time (not when we had to leave the car mid-story...un uh) the clock will not display. It's not great for when we're trying to get somewhere on time and I can't tell if I need to hit the fast lane or if we're actually prompt for a change. I can always glance at my watch instead, but it is less convenient. Somehow I doubt that other people will have this same issue...and seriously if that's the most negative thing I can say about these...really? If you don't already own them go get them. Follow the link to Amazon. Really.

Sunday, October 24, 2010

Sunday Digest 24

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

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

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

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

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

Thursday, October 21, 2010

The Learning Curves

I am increasingly amazed by the good zone we seem to be in with our daughter. A few small, now easily handled tantrums at home, but great behavior at school, at church, and at various activities. Until you enter extended conversation with her, it is hard to tell there's much there beyond general quirkiness. I'm inhaling deep breaths of these good times. It has been a long time coming, and I have no doubt that there will be new challenges to face ahead, so every minute is a blessing. I think I am learning from her how to flow with my days, to accept each one as a gift and keep putting one foot in front of the other when things are challenging, trusting that eventually we'll find level ground again.

I'm navigating the world of raising younger typical siblings. With no benchmark from our oldest child it almost feels like we're parenting for the first time all over again, if that makes sense. We've entered new territory with the twins as they have entered preschool. So far they have made that adjustment well. Their big "phase" at the moment is insisting on wearing only certain clothes. We have about three outfits each that are acceptable without putting up a fuss. This keeps the washing machine busy, and meanwhile I'm encouraging some flexibility on days when I don't get the laundry quite done on time...Interestingly it seems that this stage is useful for encouraging them to pick out and put on their own clothes, because if I refuse to change them they will take off the set they don't want, go pick out new things, and put a good faith effort into putting them on by themselves. It is amazing to watch these skills different from our first time around. Would I be so philosophical about it if I hadn't survived pitched battles over much smaller issues with our eldest? Would I watch with such awe as they learn new skills with such ease? Would I even realize the importance of this phase or understand the roots of it?

Meanwhile there are other needs in the extended family that are taking precedence, and it is good to feel like our own little clan is in a good spot and has some energy to devote to others. Sandwiched, yes, crushed, no.

In all of these things there is a steep learning curve. Learning to breathe in and hold onto all that is glorious and good. Learning to let go and let others do for themselves. Learning to step in and lend a caring hand. I don't think I would be learning it with such clarity without the experiences I've gained by raising a child on the spectrum. It is a strange blessing to be taking from the Hand of Providence.

Monday, October 18, 2010

Vacation without the kids? What? I could never do that...

Sorry, skipped a post there, Friday. Busy and also fighting off some fatigue that is really cutting into my productivity. I'll try to stick to the schedule, but sometimes the rest of life will get in the way...

Never vacation without the kids? Never say never. About nine months ago a dear friend of ours presented us with a once in a lifetime opportunity to visit Bali. At first I couldn't see how we could do it. Bali is a day's plane ride away for us, which makes any trip shorter than a week kind of silly, and then it takes a day to get back. That's a nine day trip minimum. We would be traveling with a group of adults and older teens, and financially bringing the kids was not really an option. Who would stay with the kids? How would the kids react to such a long absence? So soon after our big school transition? There were plenty of reasons to hesitate, but in the end we decided it was an opportunity that we couldn't pass up. Some big pieces of the puzzle fell into place, so we checked our passports and made our reservations.

One of the biggest pieces was my wonderful parents agreeing to take on the childcare. This was no small favor to ask. An almost seven-year-old on the spectrum and twin almost three-year-olds are not a neat and tidy package to hand off to anyone; and our household really runs best when it runs on routines. Mom and Dad leaving doesn't exactly make for routine, but my parents worked hard to learn the rest of our system so they could maintain as much of the groove as possible. We will never forget their generosity.

Of all of the things we did to prepare my parents and the children for our trip, I decided to focus on three things that seemed the most important and might be helpful to others...

Caregiver manual - My mom said she referred to this frequently, so I was glad I took the time to put it together. I filled a three ring binder with useful information like:
1) How to run our audio/visual system, which is a bit tricky. I included a list of shows the kids watch that are recorded on our DVR so that it would be easier for Grandma and Grandpa to find them. Since we returned I've been referring to it myself...
2) Morning and Bedtime routines for the kids. These seem to be the most important pieces of the day, which I guess makes sense.
3) A medical release letter and a copy of our insurance card. Just in case. It was going to be very hard to get in touch with us and we didn't want to risk denial of medical care because we couldn't be reached to give our consent. I included the kids' dates of birth, id numbers, and known medical conditions in the letter.
4) Doctors, dentists, and nearby ERs were listed with phone numbers and addresses, too. Grandma actually needed this since our son developed a mild fever and she wanted to check in with the pediatrician. Happily that went away in just a day.
5) Maps of our local area, and key destinations. Since my parents do not live nearby and don't drive much when they visit us I knew they would appreciate some directions.
6) Contact info for some of our local friends who had agreed to be "on call" should something urgent come up.
7) A schedule and menu plan for each day. Grandma said she liked having menus all planned out, and sometimes I have trouble remembering what is supposed to happen each day, so having it all written out in one place was useful.
     Other miscellaneous items: business cards, coupons, directions for checking voicemail, etc. all got tucked into one place so they knew if they had a question they should check there first. One thing I should have put in there and didn't is the baby book our pediatrician gives to each child. He has compiled a lot of information there and referred my mom to one thing in there that she couldn't find, since she couldn't find the book. She figured it out, but it would have been better if she'd known where it was. We also have used this for babysitters, once, since returning from our trip. Not everything in there is pertinent, so I'll have to revise it somewhat for that purpose, but it was certainly handy to have it all put together.

Social Story - I think I've made it pretty clear how valuable I think social stories are. I have started using them with our younger children, too. They are great for children of all abilities! This story was pretty specific to our family and how this vacation away was going to work. We explained that Grandma and Grandpa were coming to visit and that Mommy and Daddy would be gone for nine days. We explained that Grandma and Grandpa would know the best ways to take care of everyone and everything. We talked about what the children could do while we were gone. We assured them that we would think of them often even if we couldn't call (which we didn't!) and we assured them that we would come back home. We read this several times before we left and left it as a resource for Grandma and Grandpa to help the children understand what was happening.

Journals and Calendars - I made some simple books - blank paper stapled between two pieces of construction paper - for each child. They decorated the covers the day before we left and there was one sheet of paper for each day that we were gone. Each evening Grandma would pass out the markers and crayons and the children would make a picture for that day in their journal. Our oldest also had some lines on her pages so she could write a sentence or two about her day. This one is especially precious to me because besides just marking the time from our departure to our arrival it also is a simple record of what was most important to her each day that we were gone. Grandma also made each child a calendar and they marked the days that we were gone with stickers.

I'm not sure who was happier upon our return, the grandparents or the children, but the really gratifying thing was that they were all happy, and we were refreshed, if jet-lagged, from our time away.

Tuesday, October 12, 2010

Using Someone with Skin On

After two weeks off I'm trying to jump back in with both feet by linking up with the blog carnival over at (in)courage. I may have missed the cutoff since I generally write so late in the day. I'd still "(in)courage" you to check them out. It is a sweet site. More on them later, probably.

Our assignment for the blog carnival is to write about someone who encourages us, specifically someone in Christian ministry. My usual post for the day is a Bible theme related to Special Needs, so let's see if I can make this all come together.

I would like to honor our most recent Pastor at the church we attend. He would die a thousand deaths if he knew I was typing this right now, so I will not mention his name, but many of you know who I'm talking about. I may not have shared as openly before how much he has encouraged me, though. Many of you are already fans, and I hope my own story will make yours that much sweeter.

This Pastor is the one who performed our wedding ceremony, instructing my husband to treat me as fine china in spite of my strong personality and personal achievements. He is the one who encouraged me to pursue every avenue of treatment when my anxiety disorder threatened our first year of marriage, medication and Biblical counseling included. He dedicated our oldest daughter to the Lord in those early days when we thought she was just a feisty and independent little so-and-so. He helped us with remodeling projects. He came over the day that my husband lost his job and brought muffins. He visited me in the hospital when I was on bed rest for six weeks while expecting our twins. He and his wife came over shortly after the twins were born and loved on them while I got dinner ready. When we first started to understand our daughter's challenges more they were there with wisdom, advice, more babysitting, and coming to IEPs. They helped us understand "the system" and what was happening with our daughter. Several months later when I was at my wit's end he sat with me on Christmas Eve, of all days, and gave me several scriptures and lots of advice, and most of all prayer. He joined me in praying that God would provide "a way out" of the anger, frustration, and outright fatigue that I was experiencing. Just a couple of weeks later God did provide the beginning of the way out. In short, at every major turning point for almost ten years now my Pastor has been Jesus with skin on to me.

You may be wondering how a Pastor would know much about IEPs and the school system. He is also the father of a young man who has Fragile X Syndrome and autism. He has allowed God to use his son's challenges to teach him, and our whole church family, so much. He has poured himself out for our church and for his family. A couple of weeks ago he gave his last sermon at our church. The demands of caring for his son have been overwhelming for years now, and he felt God leading him to move out of active ministry and care for himself and his family. I would ask you all to pray for them as they face many changes now and in the near future. Pray God's provision, and that the Church will show up for them as they have so often for others.

One of my favorite scriptures that my Pastor and his wife have both shared with me to encourage me is
Isaiah 40:11 - He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. (NIV)
God cares for our little ones so much. They are close to His heart. And He is gently leading us, too. Sometimes He uses someone with skin on to lead us...thanks be to God!

Monday, September 27, 2010


I'm taking a short break from blogging and other internet activities. Back shortly. Thanks for your patience.

Wednesday, September 22, 2010

CD review - Ralph's World

Ralph's World
Have you met Ralph? We were introduced to Ralph when our daughter was about 6 months old. Some friends who live in the Midwest sent his CD to us. I remember putting it in the CD player in our temporary living room (we were remodeling at the time) and watching her bob along with the music. She had just learned to sit up, and I had no idea of the journey that was in front of us.

We listened to Ralph a lot while she was playing and I was doing whatever it was I used to do...She loved his music so much that I would often sing his songs to her while I was pushing her in her baby swing in the back yard. As her language delay became more evident we listened to even more music. Ralph was always a part of the mix. We had collected four CDs and a DVD by this point. She liked all of them, and it was definitely something that got her talking, "Sing Freddy Bear...sing!" Freddy Bear is the first song on Ralph's World, and it was love at first listen. All of the music is kid friendly without being hard for adults to listen to, if you know what I mean. Ralph does a good mix of original songs and childhood classics like the ABC song (then backwards) and Do You Know the Muffin Man. I still enjoy listening to all of the music and I have heard them many, many times. Really, it's good stuff. If you like the Beatles you'll like Ralph.

 I recall telling my daughter during her potty training (which was lengthy) that I would take her to a Ralph concert when she learned to use the potty. Well, Ralph doesn't make it to the West Coast very often. There were a couple of shows that we couldn't make it to, then after the twins arrived, followed shortly by our daughter's diagnosis the Ralph concert kind of fell by the wayside. Last January I got wind of another Ralph show happening in March just a few miles away. I got tickets for my daughter's birthday present and we went for a mommy and me date. She was so happy to get to meet Ralph in person, and even stayed after to give him a hug. We now have an autographed copy of Ralph's World. It was a relatively small concert, so Ralph did a lot of interaction with the children. He had them up on stage, down in the "mosh" pit, and running all over the auditorium, actually. I had worried a bit about how long my daughter would be able to sit in her chair and listen. I needn't have worried. I don't think a single kid there sat down the whole time. It was really fun.

One of the things I like most about Ralph, besides his music, is that many of his concerts are benefit events. The show we went to helped support policemen and their families. This weekend, Saturday 9/25, Ralph is back on the West Coast in San Francisco doing a show as part of the Kidaroo music festival. Proceeds from the show will benefit Yick Wo Elementary school. Back in the Midwest on Friday 10/22 Ralph will do a solo acoustic program to benefit the Jasper Against Batten Foundation, which fights a rare childhood disease. You can see a full list of his shows here (click on Tour Dates). He also does some "adult music" in his alter ego, Ralph Covert and the Bad Examples. So anyway, if you haven't met Ralph yet, you should soon. He's one of our heroes.


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