Wednesday, April 28, 2010

Book Review - Little House on the Freeway

Little House on the Freeway - Help for the Hurried Home by Dr. Tim Kimmel. I finished reading this book on Saturday night while the kids enjoyed playing in the bathtub. It's a good thing I did because Sunday, Monday and Tuesday were so busy and scheduled that I would not have had time to finish reading it before I was supposed to post this review. Did I need to read this book? Yes! Actually the copy I have is about four years old and has different cover art. I picked it up at a marriage retreat that my husband and I went to when our oldest was just over two. Pretty funny that we both felt so busy and over-scheduled then. Two kids and many new commitments later sometimes I wonder how long we're going to be able to keep this house and its occupants rolling down the freeway. I think this is a fairly common feeling for parents of special needs children. We have all the normal pressures of life: housework, child care, shopping, working, and trying to stay healthy. Add in researching/applying for/driving to therapy sessions, extra meetings at school, extra attention needed for behavioral supports, always one more technique to try, and paperwork, and that's assuming the special needs child doesn't have medical issues. For those of us who pursue a life of faith you can add personal devotions, and church commitments. No wonder I often feel like I'm running the wrong way up an endless escalator.

Interestingly Dr. Kimmel's answer isn't just: "Slow down, silly!" He breaks down inner attitudes that are needed to find true rest, things like forgiveness, a sense of eternity, service, and knowing your gifts. Dr. Kimmel also includes some practical applications for how to bring an attitude of rest to your marriage, your kids, your work, and your other relationships. At the end of the book there is a list of 101 ways to give rest to your family. Some are big (pay off your credit cards - yikes!), some are small (take a walk as a family.) Some are long term (religiously wear your seat belts) some are short term (replace the batteries in your smoke alarm). I really like all of the things that are balanced in this book. There are times when Dr. Kimmel uses a soft touch to make his point and other times where he says, "I know this isn't easy to read, but this is what you need to do..." There are some truly poignant stories used to illustrate his point and others that will make you laugh out loud. Do you like practical tips? There in there. Do you want a more philosophical approach to the idea of rest? Got it. I was particularly blessed by the chapter where Dr. Kimmel describes holding his daughter in the NICU all night as she struggled with apnea. I have a feeling he can relate to special needs parents.

End result: obviously my daily schedule hasn't slowed down a bit. (Is someone fiddling with the speed on that escalator again??) But this book, combined with a renewed commitment to address my own physical health needs, seems to have provided a new sense of focus and calm. When the to do list is too long the most important things are still getting done, and I find it easier to let the other items go.

Rest up, friends, it is a long road!

Sunday, April 25, 2010

Sunday Digest 16

Some thought provoking websites I've seen in the last couple of particular theme, just stuff to make you think a bit.

1. So how do we provide adequate housing, employment, and independence for people with intellectual disabilities? Mosaic (a faith-based group that serves people with disabilities in 14 states) thought it might be nice to ask them. You can see what some of them said here. I think they've got some good ideas!

2. A young boy with ASD gets excited about basketball. What to disclose to the coach? What will his teammates think of him? Real it here!

3. A fresh take on what to do with the looky loos. You know...the people around you who notice there's something different about your kid and just can't seem to direct their gaze elsewhere.

4. A mom shares her thought process as she considers residential placement for her child. One of the hardest decisions a parent of a special needs child or adolescent could face, in my opinion. How do you even take the first step, when, and what factors do you consider?

5. We live in earthquake territory, and will all the temblor activity gotta wonder. A friend of ours participated in an earthquake preparedness drill yesterday. You can bet I'll be picking her brain next time I see her. Meanwhile, I've been hearing about registries for special needs families for quite a while. What do you think about this? Are you registered? Do you even know if it is available in your area? I can think of all sorts of situations where this might be helpful.

Best wishes for an excellent week, my friends!

Thursday, April 22, 2010

Kid Interview

My blogging buddy SquiggleMum posted a cute kid interview with her three year old and sort of passed the baton to see if anyone else would pick up the challenge to share their child's ideas first hand. Her post is a lovely, well-connected, precocious piece on bird watching. I decided to take up the challenge even though in general posing questions to a child with language delays is dicey at best. First, it will give me a cool benchmark of where my daughter stands with this social form. Second, it will let her practice answering questions, especially "Why" questions which are still very hard for her to answer. Third, it will let all of you peek behind the curtain of how it looks to get information (of any kind) from a child with language and social delays. You'll see what I mean...

Me: What was your favorite thing at school today?

Child: To stay at school for first grade.

[Mommy should not have said the word school. We are actually getting ready to change schools in the Fall, which we told her earlier today and the word school triggers her initial response which is that she wants to stay at her current school next year...Mommy scrambles frantically to rephrase and avoid this topic...]

Me: What did you learn about?

Child: I learned about ladybugs, and chicks. And we made one today.

Me: Made one what?

Child: A chick.

Me: How did you make a chick?

Child: Out of a bag.

Me: What did you do with the bag?

Child: I made a chick with it.

Me: But how did you make the chick?

Child: I had to cut out some lines.

Me: Did your chick have feathers on it?

Child: Yes [oops avoid the yes/no question...]

Me: What color?

Child: Yellow [there I go again...another short answer...]

[Mom decides to switch from talking about past events to more current surroundings, in hopes of getting more interaction. Little Einsteins is playing...let's see.]

Me: Who is your favorite Little Einstein?

Child: Annie.

Me: Annie?

Child: Yeah, because Annie has yellow hair.

Me: And yellow is your favorite color?

Child: Yeah, and she has yellow hair, see?

Me: What’s Big Jet trying to do?

[Big Jet is the bad guy of Little Einsteins. In this episode he uses various tricks and disguises to steal a pot of soup from Rocket.]

Child: He’s going to pretend he’s a tree.

Me: Why is he pretending to be a tree?

Child: Because Rocket thinks it is…[now distracted and just narrating the storyline] He’s taking the soup! They’re going to go after him and there’s going to be lots of dragonflies! [This is her favorite part.]

Me: Are those dragonflies like the ones at our house?
Child: No, they’re kind of blue and brown.

Me: The ones at our house?
Child: Yeah those are yellow. In the next movie Big Jet will pretend to be a train.

[Just to clarify for some reason the "dragonflies" are depicted more like lightning bugs (aka fireflies) than real dragonflies. The ones on the show are glowing yellow. Dragonflies near us are iridescent blue.]

Me: Do you like dancing with June?

Child: No, I don’t like dancing.

Me: Why not?

Child: Look it! They got past all the dragonflies! [Totally not registering Mom's question.]

Me: Now Annie’s singing…do you like singing with Annie?

Child: Yeah – (singing along) get the soup, get the soup, get the soup.

Me: Do you wish you had a red rocket?

Child: Yeah with Leo and Annie and Quincy and June.

Me: Where would you go if you had a rocket?

Child: I would fly up in the air and get a cloud.

I'll have to try this again sometime without the show on. Given the school situation I was offering lots of choices and trying not to push any unnecessary buttons today. When I asked her if it was okay for me to ask her some questions she said I should ask her while she was watching her show. On another day I probably would have said I would wait until she was done with her show. I did learn a lot from recording this exchange:

  • Trigger words are no-nos.
  • Yes/no questions have their place, but not to encourage interaction.
  • Sometimes you just have to join your child where they are.
  • Sometimes you need to encourage them to reach for the clouds.

Monday, April 19, 2010

Time keeps on slipping

Very appropriately this post is participating in the Moms' 30-Minute Blog Challenge...

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

Allow me to introduce you to my favorite time keeping tools:
(pictured above, left to right, top to bottom)
The digital clock - ideally a child will also learn to use an analog clock at some time, but when a child has learned numbers up to 59 a digital clock can be a much more accessible tool. We use the digital clock in our car to talk about what time we need to be somewhere, and what time it is are we running late and needing to hurry, or do we have plenty of time and can relax.

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

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

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

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

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

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

Friday, April 16, 2010

The IAN Project

Have you heard of the IAN Project? I heard a radio spot for the IAN Project the other day...or rather I heard part of it in between asking my ASD daughter to be quiet so I could hear it. You can see a short video here that completes the audio I sort of heard. The goal of the IAN Project is to provide an on-line community where parents and caregivers can share ideas, link resources, and gather support and to be a central repository for data used by researchers and an outlet for recent discoveries. In order to participate in the research side there is an on-line questionnaire to fill out. They say it will take 1-2 hours to fill out. I haven't looked at it, so can't comment much. Evidently by participating with the survey you're providing data that may help design future research studies, or improve community services. You can join either the research side or the community side independently. I will probably explore and report more later, but for now I am excited to see this new (to me) resource.

Tuesday, April 13, 2010

Angels Part Four - The Other Side

This is the fourth of eight posts based on the Bible Study Guide "Angels" by Douglas Connelly, A LifeGuide Bible Study. Today's passage is Mark 5:1-20, in which Jesus meets the Man of the Gerasenes who is under the influence of demons. The Bible is very clear about the existence of demons. They are described in both the Old Testament and in the New Testament. Jesus confronts them on more than one occasion. It's a fairly straightforward faith system leap if you believe that angels are servants and messengers of God to also accept that God's adversary, Satan, would also have servants and messengers, demons.

The other day my daughter asked me why Satan is always the bad guy. I think she was still processing a Sunday School lesson from several weeks back on Jesus' temptation. As part of the lesson we had the children play Follow the Leader, but let two children be leaders at the same time. The children had to choose who they would follow. We explained that Jesus always chose to be obedient to God...a hard concept for a child who wants to obey but sometimes just doesn't have the physical and emotional resources to do so. In response to her question I explained in the simplest language I could use that Satan used to be an angel who worshipped God, but then one day he decided he wanted to _be_ god, and the real true God had to punish him and send him away (Isaiah 14:12-15). In Revelation 12:3-9, John describes the war in Heaven when Satan rebelled and a third of angels were cast down with him. The other angels, led by Michael, fought against him, and the battle rages on.

I have often wondered if some people with special needs, particularly psychological disorders, were mis-labeled as demon-possessed in the Biblical time period. There are many characteristics that might be similar - e.g. odd, aggressive, or anti-social behavior. In today's story the possessed man has unusual physical strength and injures himself in reaction to his spiritual agony. In accounts of Jesus encountering people under demonic influence we can be sure that is the true story. In almost every case the demons reveal themselves by vocally recognizing who Jesus is. In today's story in Mark 5:7 (NIV) the demons shout out, "What do you want with me, Jesus, Son of the Most High God? Swear to God that you won't torture me." The demons who influence the physical realm but exist in the spiritual realm immediately recognize Jesus for who He is. They are asserting their territory rights, but also recognizing that Jesus has the power to dismiss them. Jesus rebukes the demons and sends them into a herd of pigs. The pigs promptly run off a cliff and drown in a lake, and the swineherds who have witnessed all of these events run off in fright to find reinforcements. The villagers return to find Jesus with the newly recovered man "dressed and in his right mind" (Mark 5:15) and their immediate response is to ask Jesus to leave. Their fear response is palpable. I suppose they are wondering if this former "maniac" is going to remain sane or if he will return to his old ways. They've lived in fear for so long that this episode is just the latest bizarre twist in a horrible saga and they want no part of it.

Understandably the now calm man wants to go with Jesus, but Jesus tells him to stay, go to his family and tell them what God had done for him that day. I have often wondered about this man and what his life was like after Jesus sent his tormentors into the pigs. How amazing and probably overwhelming at times to suddenly be in control again, and to be given the assignment of telling people, "how much the Lord has done for you, and how he has had mercy on you." (Mark 5:19)

It is no more than all who have reached out to Christ in faith are asked to do. "Let the redeemed of the Lord say so." (Psalm 107:2) Though we may not have been bound in chains or isolated among the tombstones, we have all experienced the bondage and decay of sin. One encounter with Jesus and we are given new clothes (Galatians 3:27) and a right mind (Romans 12:2). Now He asks us to tell others, though we may just want to leave the old life behind and go with Him, there are people that we need to tell of His mercy.

Saturday, April 10, 2010

A New Category and a Tribute to an Old Friend

During my blog-cation last week, one of the things I considered changing about how I manage "The Simple Life" is to change the categories of topics I post. One of the more blurry distinctions in my posts has been the Friday "News" and Saturday "Advocacy" posts. Since I often post news items where someone has been an advocate, or occasionally highlight a news item (like the health care debate) where I feel strongly that advocacy is needed, I'm feeling like those topics are somewhat redundant. They also require the most intense searching, and in my opinion lend the least room for me to add my own voice to the mix. Starting today those topics will be combined into "Good News and Awesome Advocacy" Fridays. Which leaves Saturday open to a new category. By far the posts I received the most positive feedback (though mostly off-line) in the last year were two posts where I broke down autism and sensory integration disorder into layman's language. These are both near and dear to my heart and obviously take up a large portion of the virtual space here. However, The Simple Life is not supposed to be just about autism. My original goal, way back when (over a year ago!) was to provide a space where all special needs could congregate and be considered in the light of faith. In order to do this I need to learn more about other disabilities and put them into Simple Life language. So each Saturday I intend to focus on one particular Special Need, highlighting the cause (if known), the symptoms, the treatments, and, when possible, showcasing a hero(ine).

What better place to start than with one of the first special needs that I became personally aware of. I remember in grade school attending a student assembly where a diminutive, but bubbly girl in a wheelchair was introduced to us as a "poster child" for March of Dimes. Her name was Zel, and she had Spina Bifida. I remember participating in a walk-a-thon, but I'm not sure if it was that same year. I did not know Zel well then, but her grandparents attended the church that I grew up in and would occasionally bring her to church. Eventually we ended up at the same Middle School, though she was one year behind me. She was one of few people that I would sit with during lunch. We "passed notes", giggled over boys and the crushes we had on them, spent hours on the phone, played in the band together (she on clarinet and me on bass clarinet) and in general had a typical Middle School girl friendship. The fact that Zel sat in a wheelchair was of little consequence to me. I learned how to steer her through the maze of school hallways (even down a step or two - good training for my current double stroller days), and after I learned to drive I even figured out how to transfer her in and out of the Volkswagen Rabbit that my parents allowed me to use, and how to fold her chair up to fit in what passed as a cargo space in that car. We didn't go anywhere very exciting - just to the mall or a park to hang out and moon over boys. Zel was upset when I decided to go out of state for college. She helped me sort through belongings to take with me. We managed to stay in touch for a few years. When I came home to visit I was sure to see her and we still "passed notes", though now through the U.S. Mail. The next year Zel also started college, but things didn't go well, and she returned to our home town to figure things out. Somehow after that we weren't able to connect as well. I was in an intense period of schooling. I stayed at my undergrad campus almost year round to do research during the Summers, and then I went on to grad school. I became less boy crazy. I probably did not do my share of holding up our friendship and we drifted apart, though I think both of us would still have considered each other friends. I was quite sad to hear that Zel passed away a couple of years ago due to complications from her Spina Bifida. I think because our relationship was so rich during our school years that I never realized how much Spina Bifida really affected and limited Zel's options. She was such a good friend that it never struck me how hard it would be for her to manage the transition to college, nor did I understand that her "boy-craziness" was in some ways her cry to be loved and accepted by the opposite sex in spite of her physical limitations. I didn't fully appreciate the amazingness of her generally upbeat and happy acceptance of life on life's terms.

Though well understood in terms of symptoms and treatment, the causes of Spina Bifida are not fully known. There is some genetic component to be considered, but environmental factors also come into play. It is one of the most common neural tube birth defects (1 in 1000 births), the group of birth defects that affect the spinal cord and brain. Like all neural tube birth defects, taking folic acid before and during pregnancy is thought to reduce the risk of occurrence. In Spina Bifida this may be related to a difference in how folic acid is metabolized. Early in a child's development (less than one month after conception) the neural tube (the part of a developing child that eventually becomes the spinal cord and brain) does not close completely and at birth a portion of the spinal cord is visible outside the child's body. The child must be immediately given antibiotics to ward of infection and usually within 48 hours surgery is performed to enclose the spinal cord. Before the development of antibiotics, children with Spina Bifida generally did not live long, or if they managed to survive were severely disabled due to complications from infection. Currently even with early antibiotics and surgery, in most cases some level of leg paralysis and lack of bowel/bladder control are inevitable. With the advent of prenatal ultrasound imaging, Spina Bifida can be diagnosed before birth, which has also opened to the door to surgical correction prior to birth. Often further surgeries may be required to address spinal cord deformities (scoliosis) and hydrocephalus (extra fluid around the brain). The goal of all treatment for Spina Bifida is to give an individual as much independence as possible in all areas of life.

In memory of Zel
In comments below please let me know Special Needs that you want to learn more about or tell me about a hero you think the world needs to meet.

Wednesday, April 7, 2010

Book Review - Crow Boy

It's amazing what you can find when you take two two-year-olds to the public library and let them loose in the children's section. The other day when we tried this experiment Crow Boy by Taro Yashima was one of the first books that one of my toddlers handed to me before dashing off to pull another volume off the shelf. I noticed it was a "high quality" find - the winner of a Caldecott Honor Book award in 1958. As I thumbed through the pages, in between eye-balling where my little people were off to next, I realized that this was a story I needed to read to my older daughter and for myself, so I promptly checked it out.

Mr. Yashima takes us back to his childhood in semi-rural Japan and introduces us to a young boy, "Chibi," who is different from the other children. Chibi is afraid of the teacher and the other children. He prefers to be alone, to look at and hold bugs. He passes his time by studying the ceiling or a patch of cloth on his neighbor's shirt. He sometimes looks at the world through crossed-eyes to avoid seeing things he doesn't want to see. It all sounds very ASD to me. The other children do not understand him, and call him mean names. They even call him Chibi because it means "tiny boy". In the sixth grade a new teacher, Mr. Isobe spends extra time getting to know Chibi and eventually Mr. Isobe finds a way to show the school community who Chibi really is. He encourages Chibi to enter the school talent show where he demonstrates his knowledge of bird song, in particular various crow calls. (My twins, by the way love these pages as I try various crow calls.) Mr. Isobe then also explains that Chibi lives in a distant village and that he has travelled by foot every day beginning at dawn to arrive at school, journeying back home to arrive at sunset, and he has maintained a perfect attendance record for six grades in spite of being misunderstood and mistreated by his peers and elders. Chibi gains new respect from the school community and his nickname is changed to Crow Boy, which he seems to like.

The story itself is inspiring and potentially instructional to children and adults of the value in every human life, and the strength of the human spirit. The illustrations (drawn by Mr. Yashima and the reason it was considered for a Caldecott award in 1956) are lovely. To me it seems that Mr. Yashima was trying to show the pictures as if we are looking through Chibi's eyes. The only thing I do not like about the book is that it specifically states the cruel names that were directed at Chibi by the other children. When reading to my daughter it was easy enough to gloss over this by just saying "the children called Chibi mean names" because she doesn't read yet. It's important to me not to plant any such derogatory terms in her vocabulary as we try to encourage the practice of using kind words at all times. She will eventually learn these on her own, but I don't want to be the one who teaches them to her in any format. For a child who can already read seeing these names might be disturbing to parents of like mind.

I believe Mr. Yashima was far ahead of his time in encouraging people to take the time to understand those around us who are different.


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