A Season for Everything

There is a time for everything,
and a season for every activity under heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build up,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
Ecclesiastes 3:1-8 (NIV)

...A time to blog, and a time not to blog.

I made that last bit up...:-)

I've been blogging now for about three and a half years, and it has been a critical part in refining the parenting skills I've used with the child. Now, however, I feel like we've hit a new stage in our journey. It appears to be a stage in which more direct time and energy is required of me, and blogging seems to drain the resources rather than fill them up.  I know part of me will miss this, and I know that if I ever feel it will be useful again then I'll be back in a flash, but more than both of those I know this is the right decision for myself and my daughter.

I've already said goodbye at the other blog that I contribute to here. I'll be leaving the site "up" so if people find it and need the information here it will be here.

Whatever has brought you here, thank you for sharing your time with me, and wherever you go from here, may God bless and direct your steps.

A is for Apron

I am trying something new for a while. A friend of mine suggested taking a blogging break. It seems my kids need me more right now and blogging is (sadly) the most dispensable of my activities. I think my official sabbatical will be June and July, but I'll be "winding down" a bit in May...moving away from the heavy hitting. I am going to TRY to keep up with alphabe-Thursdsay each week, but I'll be keeping it simple (what else) and hopefully giving you a little glimpse into the child's brain at the same time. Each week I will ask her to help me find an object in our house that starts with that week's letter. It has to be a physical object that I can photograph, and they will all be her ideas. Disclaimer - photographer I am not...

When I asked her to help me think of an A word, she said, "How about apron?"
"Which one?" I asked (we have several.)
"Mine. Yours are all boring!"

I see. So here is a hastily snapped photo of her apron, the one her dear Grandma sent. We use it for baking and also for art projects. I love that it is wipe-able. She evidently finds it non-boring.

To see the other A posts, click here.

Sunday Digest 30

Sunday Digest is turning 30...and it's Easter evening, after a long busy weekend, so this is going to be short and sweet. Sunday Digest needs its beauty sleep and so do I. These are the sweetest links I've found recently. Visit these other sites and let them know you found them through The Simple Life. Thanks!

1) One of my favorite fellow autism mom bloggers (Autism and Oughtisms) posted this review of her son's first term at a special needs school. She is in New Zealand, so their system is a bit different from things here in the States, but it is lovely to hear about how they have found just the right program for him. My dream for every child, special needs or no.

2) One of my favorite adults with autism bloggers (Reports from a Resident Alien) posted her ideas about disability and difference. I love getting her inside the disorder perspective.

3) Hopeful Parents is a group blog that has a wonderful set of writers from a variety of families affected by all sorts of Special Needs. Spectrummy Mummy posted a story about rewards for her daughter and the unintended rewards for herself, too. Very encouraging.

4) Another fellow autism mom blogger (Squashed Bologna,) who I particularly love following because she is also dealing with sandwich generation stuff like our family, has started a series on all of the issues surrounding siblings with special needs. So far what consequences we've had in this arena have been felt by us as parents more than our kids, but I am reading with interest for future days when this will be a hot topic around our house, to be sure.

5) My fellow 5 Minutes for Special Needs contributor Lee, shared a suggestion from his family's experience... Family Game Night. So far we opt for movie nights, but I hope we can add this to our repertoire. Lee mentions several benefits that would be really helpful for our kiddos.

That's it! I did also want to take this opportunity to welcome my newest followers. Thanks for joining the journey here at The Simple Life. I'm always working a few kinks out here, so please forgive the cyber-dust if you happen along when I'm mid-renovations. In particular this post should debut my use  of intense debate to manage comments. This should allow me to reply directly to commenters, which should be a lot of fun. I enjoy doing this at 5 Minutes for Special Needs. I'm still playing with the look of my banner, too, so if you're back in the next few days and it looks different, it's still me! Feel free to let me know if there are topics you'd like me to write about or if you have other suggestions...very open to input over here. Easter Blessings to you!

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!

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.

Time to Rest

My children have been enjoying picking these yellow wildflowers in our backyard. I guess technically they are weeds (yellow woodsorrel, oxalis) but one person's weed is another person's, "Look, Mommy I picked these for you..." I think they are quite a cheery little flower, but I noticed in the evening they close up. I was amazed that they do this even after being picked, mangled by little hands and shoved in the handiest glass of water, and for several days in a row. At first I thought they had just wilted, but the next day, they were cheery and bright again.

I have a few things to learn from these flowers, and this seems like as good a time as any to take my lesson. March 30 will mark one year that I've been plugging away on this blog. Posting almost without fail (hospital stays don't count, right?) every third day, amazingly continuing to come up with content, begging for readership, learning the social media frenzy, and in general having a wonderful time of it.

I must admit I'm zapped. Time to curl up and rest a little...sure to reappear just as bright and cheery when morning returns. Don't worry, oxalis is a real pain in the toosh to get rid of I hear, so I'll be back...hopefully right after Easter. Call it a blogcation in honor of my blogversary. See you in the morning!

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.

For Some Personal News...

I'm pleased to report that my guest post at SteadyMom was published earlier this week. I've really enjoyed Jamie Martin's "take" on motherhood as a professional adventure. When I started following her blog shortly after re-starting my own it really helped me keep things in perspective. I was excited when she recently solicited guest posts and even more excited when she told me she wanted to publish "The Power of Uh-Oh" over at SteadyMom. I hope you'll take a look at her site and be just as inspired as I have been. Or if you found The Simple Life through Steady Mom I hope you'll take time to browse around here and here as well. Cheers all around!

Good, good, good...The Fruit of the Spirit Part 6, cont.

To review: Our children taught us a couple of weeks ago that goodness can be not so much in the behavior of the object as in the value placed by the observer. For reference consider Genesis 1:31 (NIV) "God saw all that He had made, and it was very good..." God's initial estimation of His creation was that it was very good. I don't know about the rest of you, but as a mom sometimes I struggle with my self-image in terms of whether or not I am good enough, mostly because in my heart of hearts I don't want to be "just" good enough...I want to exceed expectations: my own (which are high), other people's (often unknown), and to be honest maybe even God's.



The futility of that last point is obvious. Throughout the Bible we are told that God has an accurate view of who we are. Just two examples that come quickly to mind:

• Psalm 103:14 (NIV) - "...for he knows how we are formed, he remembers that we are dust."


• Isaiah 64:6 (NIV) - "...all our righteous acts are like filthy rags..."

I cannot win God's favor by any act of my own. Even my good stuff is like a well-used dust mop in His view, and because of my human frailty I will not always be able to do the good stuff. However, He still views me a a precious daughter not because of what I have done, but because He has made me good through the work of Jesus on the cross, and through the continuing work of His Holy Spirit in my life.



In John 16 Jesus tells His disciples that it is for their good that He is going away so that the Counselor (the Holy Spirit) will come (verse 7). He goes on to explain that the Holy Spirit will teach us the standards of sin and righteousness, by telling us what God wants us to hear.



I am convinced that I cannot meet any measure of goodness on my own. I must learn to rely more on God's Spirit to show me the way to go, and rest in His assurance that He sees me as very good.

-------------------------

This post is part of the Moms' 30-minute Blog Challenge at Steady Mom. It is also the latest installment in a series on the Fruit of the Spirit (Galatians 5:22-23, see left) learned from our children and from the Bible. You can see previous posts in the series by going to my "blog schedule" page and looking through the Tuesday and Thursday posts.

Army Strong

Greetings to anyone visiting from the Blog Hop Party. The Simple Life is all about parenting a special needs child with an eye on spiritual life issues. Feel free to browse my archive by date (see sidebar left) or by topic. I happened upon the Blog Hop Concept by visiting Steady Mom, and since it was timely decided to join up. However...

Normally Friday is a "news item" post, so I wanted to take care of business, too. Here's another subset of special needs parenting that I hadn't thought about before. Consider serving your country's military and parenting a special needs child at the same time. I cannot imagine how challenging it must be to find new resources and routines at each new assignment. What happens if you're deployed to a combat situation? It is difficult enough when you're rooted down in a peaceful suburb like our family is. The Defense Department established the Exceptional Family Member program to assist such families. It seems there is some confusion about how the program works. I'd be interested to hear from any parents that are currently enrolled in the program about whether it has been helpful to you or not.

2009 Topic Archive

I use the following schedule for The Simple Life. Below each category I've listed current posts that fall into those categories. This post is an archive for 2009 by topic rather than by date. Look here for the 2010 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
Remembering Christ at Christmas
Star Charts
School Parent Communication
Taking Care of Yourself
Signs of Success
Picture This
Back to School Parent Report
Keeping it Positive
Remain Calm
Milestones
Can We Overdo the Praise
I Love Sunday School (A Social Story)
Five Ways to Prepare Your Spirit for an IEP


Tuesday Posts - Bible Based Ideas
Gentleness through the Spirit
God's Faithfulness - Fruit of the Spirit Part 7, cont.
Good, good, good...The Fruit of the Spirit Part 6, cont.
God's Kindness...The Fruit of the Spirit Part 5, cont.
In the Hands of a Patient God - Fruit of the Spirit Part 4, cont.
The Peace of God Fruit of the Spirit Part 3 cont.
God's Joy - The Fruit of the Spirit Part 2 cont.
The Love of God - Fruit of the Spirit Part 1 cont...
Fruit of the Spirit (Introduction)
Beating Boring Barriers
I Worry Therefore I Am...
Content - Quietly Satisfied and Happy
Bring Them Up!
Exasperation
In the Beginning
Safety
Easter for Everyone
Grace and Relationship


Wednesday Posts - Review of book, movie, etc.
Book Review - The Little Drummer Mouse
Book Review - Playing, Laughing and Learning with Children on the Autism Spectrum
Book Review - When I Feel Angry
Book Review - the elephant in the playroom
Book Review - Emergence, Labeled Autistic
Book Review - Hands Are Not for Hitting
Book Review - Don't Call Me Special
Book Review - Let Me Hear Your Voice
Movie Review - Emmanuel's Gift
Book Review - Handle with Care
A Regular Guy
Even Further Behind


Thursday Posts - What We Learn from our Kids
A picture is worth...
Childlike Gentleness - Fruit of the Spirit Part 8
Childlike Faithfulness - Fruit of the Spirit Part 7
Goodness Gracious Child - Fruit of the Spirit Part 6
Childlike Kindness - Fruit of the Spirit Part 5
Learning Patience from a Child - Fruit of the Spirit Part 4
Learning Peace - Fruit of the Spirit Part 3
Learning Joy - Fruit of the Spirit Part 2
Learning Love - Fruit of the Spirit Part 1
Kid's Eye View - Wonder
Learning About God's Love
Prayer Without Ceasing


Friday Posts - News Items
1 in 110
Health Care Reform? Really?
Inclusion on the Football Field
Autism and Epilepsy Brochure
Special Needs Adoption on the Uptick
Co-teaching and Controversy
Autism Health Insurance in New Jersey
Army Strong
Commencement at P.S. 176X
Artistic Expression
Especially for Dads
Sovereignty


Saturday Posts - Action Posts - How to be an Advocate
Stamping out the "R" word
Warm Coat Drive
Puppy Love
Adventure for Autism
What Will They Be When They Grow Up?
Rainbow Riders
Take Flight for Kids
Health Care Reform
Four Legged Advocates
Seattle Children's Playgarden
Ride for Autism


Sunday Posts - Link Digest
Sunday Digest 12
Sunday Digest 11
Sunday Digest 10
Sunday Digest 9
Sunday Digest 8
Sunday Digest 7
Sunday Digest 6
Sunday Digest 5
Sunday Digest 4
Sunday Digest 3
Sunday Digest 2
Sunday Digest 1

Where to start...

I started this blog with a different focus a little over two years ago...how time flies. The point at the time was trying to understand my pull toward various interests and to spend time writing about each of them in a somewhat public attempt to find myself. During that same time period we were just learning that our daughter had "a language delay" (poor comprehension, even worse expression, phonological issues and classic symptoms of echolalia). Retrospect being what it is, I look back at my initial reactions with both amusement and frustration. I was quite upset and worried for her future, but being reassured by the speech pathologist that she would be fine with some time in an early intervention preschool program I waived off my concerns as the over-reactions of a paranoid "new" mom and got on with life. Less than six months later we found ourselves expecting twins, starting a new business, finishing an extended remodeling project, and over-extended in many ways. Our daughter seemed to be making progress with her language, and entered regular preschool as scheduled with her peers in addition to continuing her speech program.

Then, about a year ago - newly recovered from 6 weeks of hospital bed rest and 3 weeks of attending two babies in a NICU - several people started waving the red flag of Autism Spectrum Disorders at us. First we were told that our daughter had sensory integration disorder in addition to her echolalia and language delay. Her social skills were also lagging behind her peers, and we were urged to have her evaluated by a Developmental Pediatrician as soon as possible. After wading through waiting lists and intake interviews we found a doctor with an opening in early June 2008. The doctor confirmed the red flags and suddenly, life came into pretty clear focus. Having always considered myself a dedicated mom, suddenly little else seemed as important as understanding and supporting our daughter, and helping her reach her full potential as a person.

Foundational to this process, in my mind, is the impact of our Christian faith on every aspect of parenting our daughter. Our faith carried us through the challenges prior to her diagnosis and the initial grief and shock following it. Our faith helped us reach out to friends for both practical and spiritual support as we considered various schooling options and sought out social services. Our faith gives us the strength, patience, wisdom, and compassion we need to understand our daughter and her efforts to overcome every challenge that she faces. Our faith is important enough to us that we want to impart it to her, and live it out in front of her in a way that honors the One we worship. So far I haven't found a lot of resources that address the overlap of these two crucial facets of my life, and I realized that there must be other special needs parents out there with similar challenges, questions, concerns, and ideas. I hope this will be a place where the Christian community of special needs parents can convene, and hopefully reach out to the greater special needs community.

One final note for this post - you will observe that I have not mentioned the exact diagnosis for my daughter. For one thing the experts all disagree, and for another I think the entire diagnostic process for Autism Spectrum Disorders is fragmented and inadequate. Beyond that, I personally have decided to not pay so much attention to the labels that try to pigeon-hole my daughter into a certain mold and I focus rather on the specific challenges that she faces - currently: pragmatic language, sensory integration, fine motor skills, social skills, and self-regulation. These are the needs that we can address with therapy, the labels are just "convenient" for people who need to group her into some subset of humanity. Beyond even this, I hope this blog will be a place for people to find answers in spite of whatever labels have been applied to them or to their children. It will revolve around the spiritual aspect of parenting a special needs child, and as I am a Christian it will undoubtedly reflect that perspective, but I hope many of the ideas we'll discuss will be relevant to every special needs child and every special needs parent.
Can't wait to get started...I would love to hear your ideas for things to write about, so comment away!

To see a list of my posts organized by topic click here!