The Never-Ending Bake Sale

I'd like to introduce you to a young lady of impeccable character and taste! It gives me such hope when I hear about future leaders like Katie Unkle. Katie's older brother was diagnosed with autism when he was six years old. As they grew up together Katie was bothered by how people mistreated him. She decided to do something positive with her frustrations. She took her gift of baking (chocolate velvet torte to be specific), created a non-profit Cakes 4 a Cause at the age of 14, and uses 100% of the net proceeds from her cake sales to donate money to autism research and advocacy via the Doug Flutie, Jr. Foundation for Autism. You can read the full story and watch a video to meet Katie and her brother, Ben, here.

For $35 they will ship a torte anywhere in the United States.

If you happen to be local to Southlake, TX you can pick one up for $16.

Can't go wrong with chocolate velvet torte.

2010 Topic Archive

OOPS - this is a little messed up since I started using 'Pages'...working the bugs out, bear with me. Meanwhile... Look in the sidebar. At the top you'll see the SIMPLE LIFE INDEX. Click on 2010 Topic Archive to see a version of this with active links...while I rebuild this one as I have time. Grrr...

I use the following schedule for The Simple Life. Below each category I've listed current posts that fall into those categories. This post will eventually become an archive for 2010 by topic rather than by date. Look here for the 2009 archive by topic. I hope you'll find this useful as you navigate around the site. Look here to see what I hope this blog is all about.


Monday Posts - Practical Tips
The Power of Choice
Reclaiming the Sparks with your Spouse
Co-regulation...My Piece
Co-regulation...My Supports
Time keeps on slipping
Chores that Work
Tuesday Posts - Bible Based Ideas
Self-Control - Fruit of the Spirit Part 9
Angels Part 1 - Devoted to Worship
Angels Part 2 - Strangers Among Us
Angels Part 3 - Jesus is no Angel
Angels Part 4 - The Other Side
Angels Part 5 - Decisions and Directions
Angels Part 6 - The Armor of God
Wednesday Posts - Review of book, movie, etc.
(Also see the Book Reviews Page in the SIMPLE LIFE INDEX)
Book Review - My Big [Kid] Potty
Book Review - The Social Skills Picture Book
Book Review - Mother Warriors
Book Review - Anything but Typical
Book Review - Crow Boy
Book Review - Little House on the Freeway
Book Review - John Jeremy Colton
Thursday Posts - What We Learn from our Kids
Self-Control, the child's perspective - Fruit of the Spirit Part 9 cont.
Persistence
Wants and Needs
Time to Rest
Kid Interview
Why, oh, Why?
Friday Posts - News & Advocacy
Sensory Sensitive Cinema
Of Stories, Questions, and Mistrust
It's Like Riding a Bike
Seclusion Rooms and the Like
The IAN Project
Look Who is Playing at Carnegie Hall!
Shoot for the Moon (or some clay...)

(old) Saturday Posts - Action Posts - How to be an Advocate
Acoustic for Autism
The Never-ending Bake Sale
Olympic Fever
Number One Advocacy Need

(new) Saturday Posts - Highlights and Heroes
A New Category and a Tribute to an Old Friend
Tourette Syndrome Primer
A Primer for Cerebral Palsy (CP)

Sunday Posts - Link Digest
Sunday Digest 13
Sunday Digest 14
Sunday Digest 15
Sunday Digest 16
Sunday Digest 17

Book Review - My Big [Kid] Potty

Our twins are at the beginning stages of showing some interest in toilet learning. Fun and overwhelming all at the same time. It is bringing back loads of memories from this phase with our oldest daughter, which took over a year. This was in the days before we understood anything about her challenges. We knew she wasn't talking like other kids her age, but we didn't know why. She did have some (unique) ways of communicating that got the message across. We felt like she was physically ready for toilet learning, but she wasn't taking the initiative. Having noticed that she learned things from stories (but again way before I had even heard of social stories) I checked My Big Girl Potty out from the local library. We renewed it as many times as we were allowed to, and then I bought a used copy from Amazon. I cannot even guess how many times we read it. Often we read it while "trying the potty" hoping she would make an even stronger connection. It is not a true social story because it is written about a little girl named Ashley, but any little girl could become instant friends because "Ashley is a girl just your age." who "...likes playing with toys and looking at books." The child follows Ashley's journey from diapers to potty chair and witnesses her first success (complete with surprised look on Ashley's face). The parent learns some suggestions like letting the child play with their stuffed animal trying the potty, and sitting with clothes on first to get acquainted-like. Ashley graduates to big girl pants, and even survives an accident with a calm and regulated Mommy and Daddy helping her clean up and reassuring her that she will remember next time. As pictured above there is also a boy version. I have not read that one (yet...will have to pick it up next library trip, though).

Hindsight being 20/20 I'm sure we did a lot of things "wrong" with our daughter in this area. I often wish we had known earlier what was going on. If we had known, perhaps I would have looked at resources like these (and there are lots of others...try a google search) for assistance with this challenging transition:

• Toilet Training Children with Special Needs
• Rifton Toileting Systems
• Potty Training Your Special Needs Child

I'm glad we found My Big Girl Potty, though. It's definitely one thing we did right.

Sunday Digest 13

First a little celebration: This post is my 100th post on The Simple Life in its "new" form. From the archive count at the side it *looks* like my 101st, but one post is really my archive by topic which doesn't really count...just my way of making a separate page that lists all of my posts under their various categories instead of by date. Seems like a big deal that 100 times I've sat down at my computer and let the words flow...attempting to make what is a very complicated dance into The Simple Life. Just a small celebration. Probably calls for some chocolate.

Now to the business of the day:

1) I have been thinking a lot and wondering about what is happening to special needs individuals in Haiti. I'm sure most everyone there is suffering one way or another, but I wonder if there is a bigger gap of need when one is challenged in every day life, much less in a disaster of this scale. Here is a story I found about an Irish missionary who works with special needs children - the story of her survival, and her continuing work. I encourage you to check out the work of Partners International and Compassion in Haiti. These are two organizations that we have supported long term and trust to handle funds effectively.

2) Special thanks to my blogging buddy SquiggleMum for sharing this post from her husband SquiggleDad(?) on depression. It has been increasingly impressed on me that parents of special needs children are especially prone to fall into depression. There is an almost endless cycle of stress and grieving that leaves a razor thin edge of psychological and emotional well-being. The image of depression presented here was powerful enough to explain it to the few who do not struggle with this mental monster and yet encouraged me to take a new perspective when I'm feeling blue.

3) A friend from Facebook pointed out this resource for ADD/ADHD families. I have only glanced at Dr. Hallowell's blog, but it seems to have some good information for relationships with ADD/ADHD individuals: both from a marriage and parenting perspective. I may add some of his books to my list of things to review in the future...so watch for those.

4) So glad to find Laura Shumaker's City Brights blog. Laura's book "A Regular Guy" was the first book I reviewed on The Simple Life. I really appreciate Laura's voice as an experienced special needs mom...perhaps in part because she lives nearby so I know she lived this life right where I live it. I'll be happily following her blog...she also contributes regularly to 5 Minutes for Special Needs.

5) This post at Miracle Baby voices a struggle of many special needs parents...am I doing "enough" to help my child progress and overcome their challenges.

Self-Control, the child's perspective - Fruit of the Spirit Part 9 cont.

• Imagine if you will, living in a world where your eyes are constantly assaulted by light that seems to scorch your retinas, or where everything is dim and hazy making it hard to navigate around objects or focus on small objects.
• Consider loud, unexpected noises that send your heart racing and make your flight instinct take over every rational thought. Conversely what if all sounds were muffled, staticky, warped so that words jumble together into nonsense.
• What if around every corner there is a smell that turns your stomach?
• What if every bite of food tasted the same and you didn't like the taste? How about if your food is always too hot, or the flavors were so overwhelming that you couldn't swallow.
• How about every piece of clothing feels like sandpaper or a sunburn, and no one understands that if they sit so close to you it makes your skin crawl.
• Can you picture being dizzy just from walking across the room? What if reaching up to scratch your ear you found your finger in your eye instead?

Under those circumstances (or even just a couple of them) how long would you keep your cool? Would you be able to maintain eye contact and appropriate verbal communication with people around you? Would you be able to sit still for long periods of time listening to sounds that aren't comfortable much less making sense to you? Would you be able to refrain from pushing away the person who rubbed against you as they sat down next to you? Would you want to pick up a pencil, sit quietly and write letters just because someone asked you to?

I am attempting to describe (from my own limited understanding) what individuals with sensory processing disorder may experience. It may take a different form than what I've sketched out above, but sensory processing disorder involves a miscommunication between the sensing organs (eyes, ears, nose, mouth, skin) and the brain. Although the ears may function normally, somewhere between the eardrum and the brain the signals get scrambled, misinterpreted, and therefore responded to in unexpected ways. Besides the five senses you commonly think of (sight, sound, smell, taste, and touch) there are two "gravitational" senses related to the position of one's body in three-dimensional space (vestibular), and the relative positions of various body parts to one another (proprioception). Some people "hyper"-sense in one or more areas -- meaning that they hear things louder or that smells are stronger than they would be for a typical person. Others are "hypo"-sensitive, so it takes more swinging, spinning, or jumping to give them a sensation of exhilaration. This is one of the first "disorders" that we were told was affecting our daughter, but I still don't have a good grasp of exactly what her world is like.

What I do know is that her self-control on an absolute scale must be orders of magnitude beyond mine. Just a little too much noise or commotion and I will more than likely lose my temper. We know that everyday sounds and conversations are challenging for our daughter, but most days all day long she copes with this maelstrom of sound without collapsing into fits. Just a few minutes of vertigo when I'm fighting off a virus makes me want to crawl back in bed and stay there. Our daughter has odd sensations of gravity often but doesn't let it stop her from wanting to ride a bike, master a scooter, or take up roller skating.

When I remember how much she has to overcome and conquer all day, every day, I am both astounded at her willpower, and humbled by my own lack of discipline.

The Power of Choice

We had a meltdown in the car yesterday. I think I understand what caused the problem. The root of it is that our "babies" (now two, actually, and I will have to think of another descriptor for them soon-ish) are beginning to express opinions and wishes with all the enthusiasm that two year olds can muster. My oldest daughter has had almost six years of being the only kid opinion in our family, and I imagine there will be quite a little period of adjustment as she learns that her siblings have desires and wants as well. In particular, the latest thing is that the twins want to trade car seats sometimes. Because their car seats are at the same stage and they are basically the same size I am more than happy to let them sit in different seats if it means they'll climb into the seats more willingly. So our little girl decided she wanted to sit in the back of the van yesterday and for some unknown reason our big girl wanted to sit by her sister in the back. This is when the problem arose. The other back seat in the van was folded down and covered up by our double stroller and some other miscellaneous cargo. At minimum it would take several minutes to rearrange seats and cargo in order to accommodate this request for our oldest daughter to change seats. There are some times when I might have honored the request, but this was not one of those times. We were running late for lunch and for the babies' naps, it was raining, and we were not parked under shelter. These factors added quickly to a "not this time" answer, and the meltdown commenced.

The bottom line was our little girl had gotten a choice about where she wanted to sit, but our big girl didn't get a choice and was letting us know how unhappy she was about it. Now we were driving, and the only course of action was to give as little attention as possible to the tantrum. This is hard when confined to a car. I'm not very good at it. I have to use peripheral vision to make sure she is not going to lash out physically at whoever is nearby. Yesterday I finally told her she could yell as much as she wanted to but she had to keep her hands and feet down. After I told her this it was a short time later that she stopped yelling and said in a regulated voice, "I really wanted to sit in the back." All I could say was, "Sometimes you can't have what you want." Knowing that she was now listening better I explained that some other time we could change her seat if she wanted to, but today it was not okay because of the rain.

I purposely did some things later in the day to show her that she could still exercise her choice. I let her choose from a list of possibilities what she wanted for lunch, and I invited her to come with me to pick items for her upcoming birthday party.

Lessons learned from the meltdown:

• Choice is a powerful motivator
• Lack of choice is potentially infuriating, especially if we don't understand the reasons
• Removing some aspects of a tantrum may shorten the duration
• Re-establishing the power of choice is essential

Obviously this is fresh. I'm still processing many aspects of the event. Your thoughts and ideas would be most welcome. Just leave a comment below!

Sensory Sensitive Cinema

I have seen a few posts about this on Twitter and thought it was time to investigate further. AMC theatres across the country have begun to participate in Sensory Friendly movie screenings once a month specifically to cater to individuals with autism. These are not re-run movies, either, but new releases with the volume turned down a bit, the lights turned up a bit, and fellow audience members who will understand the occasional ill-timed outburst. Next up is "The Tooth Fairy" on February 6.

We rarely attend movie theatres these days. Mainly the price tag is a bit much when we can use Netflix and watch in the comfort of our own "home theatre" with whatever snacks we wish on hand and the pause button available when needed. I've only attempted the theatre with our oldest daughter twice. The first time she was probably 3.5 years old and I took her to see Cars, mainly because it was boiling hot at our house (pre-AC) and I knew the theatre would be cool. We went to an afternoon matinee and lasted about half the movie with a couple of field trips to the lobby, the restroom, down the aisle, etc. She wasn't being loud, but even in a matinee with other children I felt like we were too big of a distraction for the price our fellow audience had paid. We ended up wandering around the theatre for a while (still coveting the AC) until the ushers started giving me odd looks at which point we made a graceful exit while we still could.

More recently we saw "Hoodwinked" in a crowded matinee setting and I was much more prepared. I primed our daughter to understand that it would be dark, and maybe loud, but that she would need to sit quietly and watch the show. I sat on one side of her, Daddy sat on the other, and we were the first three seats off the aisle in case we needed to exit. Most importantly I brought along a bag of "fidget toys" - a trick I learned from our behavior support class. These can be almost any random kind of object though they should be soft (in case they unexpectedly become a projectile) and for a movie especially they should be as quiet as possible. Interesting textures, things that stretch, string that can be laced around fingers, all make great fidget toys. They provide a sensory focus or distraction when other inputs become overwhelming. For our daughter they ward off the boredom of waiting for something fun to happen. I had a bag with four or five fidgets. I told my daughter that I had them and if she wanted one she could ask for one in a soft voice. Hoodwinked has a fairly complex storyline, so it wasn't long before I heard her ask for a fidget. At first I worried that I wouldn't have enough different objects, but she paced them and made it through the movie without any problems. Wow! Score one for priming and preparation!



I would probably make similar preparations even for a sensory sensitive screening, simply because it was such a great feeling to work together with my daughter to help her behave well in a challenging setting. If you are interested in AMC's sensory friendly films, you can find a theatre here. There aren't any "really" nearby for us, but maybe if it catches on...



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

Self Control - Fruit of the Spirit Part 9

I do so like to finish what I started. I had hoped to finish the Fruit of the Spirit series in 2009, but circumstances beyond my control came into play. Speaking of control, that is the last fruit we have to look at: self-control. When it comes right down to it, self-control is just about the only control we have.

I spend large chunks of time trying to maintain order, structure, cleanliness and routine in our home. I wear myself out with the organizing. I have a spread sheet that I update each week with my daily projects, to-dos, appointments, and menus. I have more spread sheets with pre-organized shopping lists and packing lists for trips. I don't think there's anything wrong with this level of planning, and it can come in quite handy. For me it means I've "pre-thought" my day and I just need to review my list rather than decide on the fly what's going to get done that day. The problem comes in the illusion that all of this planning will actually bear itself out in reality. Most days I don't get to everything on my list. I still have to choose the most important tasks or procrastinate accordingly. Sometimes I forget to check the list, so I have to rearrange things and punt. Other times, like two weeks ago, something totally unexpected and urgent happens and everything else is put on hold indefinitely until the crisis has passed. As long as I remember that my plan doesn't mean I'm in charge it is all okay.

However, there are days when I have a very hard time letting go of my plan. I am like the farmer in Jesus' parable who lays awake at night scheming up the bigger barn that he's going to build when God says, "You fool! This very night your life will be demanded from you. Then who will get what you have prepared for yourself?" (Luke 12:13-21) Well...maybe not quite like that yet...thanks be to God He has not required my soul...but it is the same idea. I plan and scheme and expect everything and everyone to fall into line with my idea of how the day should go, and when it or they do not I lose sight of the one factor I can control: myself. I yell, I stomp, I shake my finger threateningly, and all of the bluster gains me nothing but a higher blood pressure.

Plan, yes, because that is wise, but when things do not go according to plan, remember that planning is not equivalent to controlling. I, yet not I but the Spirit within me, can only control how I respond to the things that are out of my control. I must, in fact, continually yield to His control in order to be self-controlled. This brings to mind Ephesians 5:15-18 (NIV):

"Be very careful, then, how you live - not as unwise but as wise, making the
most of every opportunity, because the days are evil. Therefore do not be
foolish, but understand what the Lord's will is. Do not get drunk on wine, which
leads to debauchery. Instead be filled with the Spirit."

Let's break it down into bullet points:

• Be careful how you live, making the most of every opportunity - PLAN
• But understand what the Lord's will is - Remember you're not in charge
• Don't be drunk on wine - Don't lose your self-control
• Instead be filled with the Spirit - Rely on God to provide self-control

Again I must yield to Him. Every day, every moment asking Him to provide the character that I need to meet life's off-plan moments.

Acoustic for Autism

I wanted to let you all know about this CD (also available for digital download from iTunes or Amazon) put together to benefit autism research, and awareness. All (100%) of the net profit from this project will go to support autism charities. The two friends who produced the album both have autistic children and wanted to make a difference. Twelve different artists have contributed acoustic music (some previously unreleased) to the project, all following the theme of hope and healing. You can read a review by Steve Morse in the Boston Globe here.

This is a pretty straightforward action plan...If you think you might like the music, buy the CD. Tell others about it and encourage them to buy it, too.

It just shows how people with big hearts can use their talents to work together to make progress against an increasingly challenging problem.

Book Review - The Social Skills Picture Book

First, on a personal note, thanks for any thoughts and prayers you sent our way in the last week. The emergency passed, and everything is pretty much back to "normal" around here. I have not decided whether I will write more about our adventure here...so stay tuned, but apologies in advance if I decide to focus on other topics. At the moment it all seems like it could have just been a bad dream...

Meanwhile back to our usual schedule. I wanted to let you all know about this resource if you aren't already familiar with it. I actually bought this book before we had a formal diagnosis for our daughter. Someone had told me that social stories might be a good approach for her even if she wasn't on the spectrum. They recommended this book as a good place to start, and I must say I agree. Once again I haven't read every page of this book, but it is not that sort of a book...it is a deep well of knowledge on social stories, topics that can be addressed by them, and how and when to write them. "Part One" is a brief introduction to autism, social skills teaching, social stories, and how to write your own stories. "Part Two" is a list of social skills and example stories including pictures to go with those skills. For example there are stories about respecting personal space, taking turns, and dealing with mistakes. Studying this book is the primary way that I have learned to write social stories for my daughter. Although the stories are general and must be fine tuned to each individual, the correct form is emphasized, and the pictures are good examples of what might be needed to make your own story.

I also have to say that I love the cover photo on this book. It's just a happy picture, with four happy kids who seem secure in their happiness. Do you think any of the children here might have autism? Which one? Are you sure? I doubt you can tell for sure, which is exactly my point. Autism can be an "invisible" disorder in the sense that an individual with autism may "look perfectly normal" though they struggle to perceive the world around them in a way that makes sense to them. (Is that why the shoes are above the heads?) Bear this in mind as you go about your business as usual. The mom that you're criticizing because she can't get her three year old to behave may be dealing with more than the usual trials of toddlerhood. The young man who gave you an off the wall response to your casual, "Hello" as you passed each other on the sidewalk might not be as inebriated as you initially thought.

“You never truly know someone until you've walked a mile in his shoes.”

The Social Skills Picture Book can help you do that by helping you realize how skills you take for granted (like knowing when it is okay to interrupt and how to do so politely) can be challenging for others.