The Simple Life: May 2009

Sunday, May 31, 2009

Sunday Digest 2

Here is your second installment of links that I've come across that seem important to the task of parenting special needs children. Without further ado, here are five cool links you might want to check out.
(disclaimer: not extensively vetted - as with anything you find on the internet read and enfold into your world view with caution!)

Special Needs Adoption – Meet the Cancilla Family who adopted their son Harrison who has Down Syndrome. They set out on their adoption journey with that goal in mind. With some help from The Orphan Foundation they were able to make their dream come true. Big hearts I must say.

Graduation is a grand moment that many parents are celebrating this time of year, but none more than this Father. This is dedicated to all special needs young adults who are reaching this big milestone this Spring, and for the parents who helped them get there.

This website looks like a great resource for parents and teachers of ASD children. They have some free web-based training under their "parent" tab that I hope to check out. This may also be a great resource for explaining ASD to family and friends.

This place looks beautiful in every sense of the word. I wish we lived closer to West Virginia.

And, should the unthinkable happen, FEMA has some suggestions for how to prepare for disaster when you care for someone with special needs.

Also, please note that I've added two premanent links on the sidebar. One is for an on-line magazine that seems to have tons of useful information (I particularly liked the article on traveling with a special needs child since family vacation is looming) and Insight for Living's ministry was pointed out to me by my friend (and reader) Cindy.

You can see a list of Sunday Digests (and other posts) here.

Thursday, May 28, 2009

Learning About God's Love

A few weeks ago our Pastor challenged us to dig deeper into our love relationship with God. Each day he e-mailed us something to meditate on along with scriptures and songs that were related to that day's focus. Little did I know that God had a hands-on lesson in mind for me. Tuesday's assignment was to seek an understanding of the depth of God's love for me.

Tuesday mornings can be chaotic at our house. My husband very thoughtfully takes our daughter to her special preschool program on his way to work. This saves me a trip to school, but costs me a few gray hairs probably. I am the ringmaster of a three ring circus on these mornings. In ring one we have a five-year-old who needs a strict routine of snuggle time, getting dressed time, breakfast time and get ready to go time, all of which needs some level of practical or emotional support. In ring two we have a husband who may be interrupted in his routine by urgent phone calls, e-mails, etc. In ring three we have two babies who wake up somewhere in the middle of all of this, sometimes with an urgent diaper, always needing supervision. Meanwhile besides keeping everyone on track I am in charge of preparing breakfast for everyone and packing lunches for two people. This is the baseline. I don't remember particulars of that Tuesday morning, but I do recall sending my husband and daughter out the door with less than a pleasant look on my face. I felt like my ringmaster role was not being respected. What good is it to announce the next act if the performers won't perform?

I stomped my way into our home office and checked e-mail to cool down a little before facing the twins over oatmeal and sippy cups. There in my inbox was the still small voice of God in the form of a suggested prayer to Him:

Dear Jesus, thank you for loving me, while I was still so unlovely. Thank you for demonstrating your love to me by giving everything for me. Please impress on me today, the depth of your love, cause me to understand and cause me to walk in your love. In Jesus Name, Amen.

Not only did God love me at that exact moment when I was anything but lovely (jammie clad, uncombed, red-faced and grumpy) but He could provide the love I needed to give to my own family.

Our children can teach us a lot about the love of God: how to receive it, how to bestow it, how deep it runs, and how much we need it.

Monday, May 25, 2009

Can we Overdo the Praise?

I heard some "expert" the other day on the radio complaining about how parents these days praise their kids for everything: "You took a breath, good job, kiddo!" Somewhere out there in parent space there may be one or more of these individuals, but speaking for myself (which is all I can do) I don't think we praise our children nearly enough.

I am currently praising the babies when I catch one of them sitting on a chair, because I would rather see that than them standing on a chair, getting ready to climb onto the adjacent table. Believe it or not I think they are catching on. I also spend a fair amount of time taking them down off of chairs, and asking them to sit on their bottoms, but I could repeat those actions and say that phrase 1,000 times a day with little response on their part except to start climbing up again. After all, in these responses I’m paying attention to them when they are standing on the chair. When I say, "good sitting on bottom, I like that sitting" etc. their entire face lights up and they will sit longer. They understand that this makes Mommy happy, and that's the key.

Our oldest needs praise even more. Because she has a hard time interpreting language, not to mention social interaction and other information from her environment, giving her directions and expecting her to carry them out is a tall order. When she does it, she deserves recognition, and recognizing her achievements, no matter how small, makes her more willing to try again the next time we tell her to do something. It’s even more important to praise her when she does something that she really didn’t want to do, but she does it anyway.
Jesus told a story in Matthew 21:28-31 that is appropriate, though His end point was more esoteric.

“…There was a man who had two sons. He went to the first and said, ‘Son, go and
work today in the vineyard.’
‘I will not, he answered, but later he changed his
mind and went…”

Jesus rhetorically points out that this son “did what his father wanted” even though his attitude wasn’t right at the beginning. When they do what we want them to do we need to recognize it, acknowledge it, and appreciate it.

Will they become dependent on praise for everything they do? Not if we shift from one accomplishment to another. I no longer make a big deal of it when our daughter puts her shoes on. She’s been doing it since she was two. Hey, I took video the first time she put her shoes on and it was a big deal. We were thrilled at her accomplishment. Now I praise her for listening when I tell her to put her shoes on because it’s time to go. This is much more of a challenge when she would rather keep playing than get in the car to go to school or to go shopping.

Can we take it too far? Only if our heart attitude puts our child before the One who deserves all of our praise.

Credit where it is due: I learned about this 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 on this technique.

Friday, May 22, 2009

Especially for Dads

After finding John Piper's blog and the talk by John Knight posted there, Mr. Knight was kind enough to contact me personally and, among other things, tell me about a second talk that I wanted to let you know about. Pastor Kempton Turner, one of the pastors for youth at Bethlehem Baptist Church, is the father of a six year old boy with multiple disabilities. He spoke to a group of dads of special needs children at Grace Church in Minnesota on March 18. You can hear his story here.

Someone posted on Twitter the other day that they were looking for resources for special needs dads, so I know this is a real need. Not being a dad, but being married to one, I know there are different needs for fathers than there are for mothers when it comes to parenting our kids. I hope this talk will be helpful to many of you.

Related posts:

Sovereignty
Inclusion Series starts here

Wednesday, May 20, 2009

2009 Topic Archive

Tuesday, May 19, 2009

I Worry, Therefore I Am...

...a mother.

Back before our daughter was diagnosed with her various delays people quite regularly asked me why I was worried about her, and I would reply, "Because I'm her mom and that's my job." It is, unfortunately, also a part of my flesh that I struggle with daily, sometimes hourly. It is clear that God does not want us to worry. One could even go so far as to say that it is a sin to worry, at least when we allow it to distract us from our relationship with God, our rest in Him, or our responsibilities toward others.

I think special needs parents tend to worry a little more than the norm. We might think it is our right since everything about our children's lives can seem so uncertain at times. How will they function as they grow up? Will they have good friendships? Will they come to understand our faith? What effect will this have on their siblings? And on the list of questions goes. And yet I believe this gives us all the more reason to ask for and recognize the work of God's hand in our families.

In the sermon on the mount Jesus told His followers not to worry even about the food they would eat or the clothes they would wear. Jesus said that God generously feeds the birds of the air and clothes the flowers of the field with splendor without them lifting a finger and that God loves us so much more than the birds and the flowers. In the end, He says, "So do not worry, saying 'What shall we drink?' or 'What shall we wear?' For the pagans run after all these things, and your heavenly Father knows that you need them." (Matthew 6:31-32, NIV) God showed me with this verse that worry is a form of idolatry. If we are so focused on the things we are worried about that we are running after them, then we're not following hard after God.

Paul gives us the solution to this problem of worry in Philippians 4:6-7, "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." (NIV, emphasis mine) In other words, "Don't worry, PRAY!" For me this now means that every time I feel that anxious tight feeling building in my chest I breathe a prayer for resolution to whatever it is that I'm beginning to worry about. I try to catch it early and often.

A couple of years ago I heard a speaker use an illustration that has been very helpful to me as I have learned to let go of this habit of worry. Evidently a missionary she knew had given a talk about worry somewhere in Africa. A native believer approached the missionary and told him that he had noticed a difference in how Africans and Westerners bring

things to God in prayer. He said, "You hold out your hands like a cup with hands outstretched in front of you, while we put our hands out as fists and open them palm down." When you offer God something with palms up it is easy to grab it back from Him and keep worrying about it....have you really let it go or is it still resting in your palms? However when you put out a fist and open it palm down, you cannot grab it back. It has already fallen away into the hands

of your loving Father. There is a palpable difference in these two offerings. I know, because I've tried it. There is a definite sense of finality when you open a fist and let the worry fall away. Overwhelming peace immediately follows.
So if you worry as a regular habit in your parenting, consider praying instead, and really leaving your concerns in the hands of our Father.

Sunday, May 17, 2009

Ride for Autism

Saturday posts will be dedicated to action points, i.e. creative ideas to be involved as an advocate for special needs children: fundraising, letter writing, social networking, etc. The more unique the better because these challenges need everyone to pull together in every possible way. (Sidebar: yes, I'm posting this on Sunday, but only to make up for being out of town yesterday, so it is really a Saturday post.)

I first saw this fundraiser idea on twitter. At first I thought they were talking about a bicycle race, then I checked out the website and the various old school rides pictured along the top made it clear these are bikers, not bicyclists. Given the recent increase in popularity in motorcycles it seems like a great idea. I used to love watching the show about Orange County Choppers...and that's as close to a motorcycle as I've been for about 20 years, but as I navigated through their website for the Ride for Autism my respect for this grass roots effort grew. It was started by special needs parents who wanted to repay the help their son received by giving to help others.

Their next ride is August 8, 2009. If you are a biker you can ride. If you know a biker you can tell them about it. If you have time on your hands and/or live in the Los Angeles area you can volunteer. If you know nothing of the biking world you can make a donation or become a sponsor. It's just one opportunity of many to give, but it is a young organization that can probably use the help, and they in turn will help others. Ride on!

Wednesday, May 13, 2009

A Regular Guy - Review

One of the things I'd like to do here is review books and other resources that readers might find useful or helpful. Feel free to suggest books with a comment. A friend of mine brought this book over one day and told me I needed to read it. Some other people had told me about "A Regular Guy: Growing Up With Autism" but I was reluctant to read it. At the time it seemed like I needed to read more about various therapies and what little is known about autism than another mom's account of raising her autistic son. Since someone placed it in my hands and expected me to read it I started it and couldn't put it down. I think I read the first five chapters in one sitting. It helps that the author and her family live in our area so I recognize many of the places she describes and can picture our own encounters in those environments and imagine quite vividly the scenes she is describing. It helps also that she jumps right into the story and really bares her soul as she recounts her slow realization that something was different about her son (his intense interest in the wheels of a scooter-board struck a nerve) and the continuing journey toward a "diagnosis" and all that entails. School, siblings, socialization, safety, and spiritual struggles are all recounted with openness and a positive perspective that helped me realize that someday I would look back at our own struggles with a similar assurance. There's no strident advice here, although I think one could learn a lot from this mom about the choices and steps we take to support our special kids through every challenge that they face. I would highly encourage you to read this book if you are parenting a special needs child because you will come away with a renewed enthusiasm for facing your days with a smile and a shrug. I would also encourage you to read this book if you know someone whose child has autism specifically. It will help you know better what life is like for that parent and for that child, and how you can support them best.

Other book reviews:
Handle with Care

Sunday, May 10, 2009

Sunday Digest 1

On Sundays I'm going to be posting a digest of links that I've come across that seem important to the task of parenting special needs children, some will be from a faith perspective and some will simply be practical or "in the news" types of posts...this is of course by no means comprehensive. For time purposes alone I'll probably limit it to five cool links (do you really have time to read more than that?). Also I should note that these are not extensively vetted - as with anything you find on the internet read and enfold into your world view with caution! :-)

Friendship Circle – pairing special needs children with teenage volunteers – supports special needs children with companionship, supports parents with respite. I am always looking for groups that encourage typical and special needs friendships.

Financial planning for parents of special needs children. Something I've thought about but not done much about...put that on the long to do list!

Following up on a conversation I had with a friend of mine...two blog posts with alternate points of view:
Parents venting at lack of progress in finding a cause, and or a cure for autism.
and:
A parent with autism with his own view of the cause(s) of autism.

Last but not least, if you're feeling the least bit worn down by your role as a special needs mom, this piece written especially for mother’s day will melt your heart.

You can see a list of Sunday Digests (and other posts) here.

Thursday, May 7, 2009

Prayer without Ceasing

Today is the National Day of Prayer, a fact that has been on my mind for weeks since I help coordinate prayer activities at our church. I started the day with a longer than usual prayer time myself because of some incidents that happened with my daughter yesterday. Another special needs mom I know posted some prayer requests and praises on Facebook. All of this got my mind going on how I could incorporate some things about prayer on The Simple Life.

Paul tells us in I Thessalonians 5:17 that we should "pray continually;" (NIV) and in Phillipians 4:6 he encourages us to "...not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God." (NIV) Bottom line: pray all the time about everything. The first verse is easy to memorize, but hard to put into practice. The second is something I've been spending several years learning because my natural tendency is to worry. Even if I have prayed about something I will often take it back from God's hands and worry about it some more, not accepting His peace, and assuming that I can figure it out on my own.

For me this relates to special needs parenting because I believe we have a unique opportunity to see the power of prayer in our lives and in our children's lives. I have seen God answer prayers in amazing ways for our family and our daughter. One example: In April 2008 we were told by several people to see a developmental pediatrician "right away" but the two that were most recommended had waiting lists until September 2008 or January 2009! I prayed, and God opened an appointment before the end of May, four months before our human efforts. Coincidence? The evaluations and reports were done just in time for a meeting with the school district to determine eligibility for Summer programs. There have been other prayers that He has answered with "No" and in retrospect it has been for good. Praying "continually" simply takes on new meaning when it relates to getting through every minute of every day with a child that needs extra support in the most basic of daily events.

To make this a practical reality here on The Simple Life, I decided to try adding a tag board where we can add prayer requests. I promise to pray for every request that is left here...you don't have to put your name or your child's name (God knows!). If you read regularly and can commit to pray please do so! I hope this will be a way to support each other. If this particular format doesn't work or if I start to see it abused in any way I'll have to reconsider how to do this. Meanwhile, let's pray!

Monday, May 4, 2009

I Love Sunday School

I wanted to share with all of you a social story that I wrote for my daughter in the last couple of weeks. We've been noticing that she is having a hard time regulating her behavior in Sunday School, and this is challenging to her teachers and peers. Of course it is hard on us, too, to hear at pick up time that various incidents have occured that morning. We have found in the past that social stories can be quite effective in helping our daughter learn to behave, so I decided to try this approach with her.

For those who are not familiar with social stories, click here for a thorough discussion. From my own experience I see them as a way to put into words and pictures the basic foundational principles of how we want our children to handle a challenging situation. For some children simply looking at another person when spoken to can be challenging, and a social story can be written that addresses this challenge. We have written stories about birthdays (our daughter did not understand that she only gets one each year, which made it harder to enjoy friends' birthdays because she wanted the attention and fun to be focused on her), going home from school, calming down, and now Sunday School. The story is written from the child's perspective and the language can be adapted to whatever level the child is at. I should clarify that I have no formal training in writing social stories, but I've read more than a hundred and have a good feeling for how they are constructed. I should also note that social stories were developed for children with Autism Spectrum Disorders, but they can be helpful for almost anyone who has difficulty interacting in a certain social setting, including normative children.

I generally write the text first and then consider what pictures will help explain the text in a visual way. I use our digital camera to take pictures relevant to the story, although I have also used clip art if it's more appropriate or easier. After I add the pictures to the text I format a word document (half sheets of paper make a nice size for the final story size) and print color copies. I then laminate the pages with simple stick-on laminating sheets. I like hooking the pages together on a ring like a keychain. I've also seen examples of putting the pages into ziplock bags and then binding the ziplock bags together (on the zipper end) as a simpler way to protect the pages.

The story needs to be sturdy because it will be read a lot. Ideally the child should read the story with you before they enter the environment where the challenging situation will occur. Several readings can be helpful to be sure the child understands the text and pictures. In this case we read the story with our daughter before she went into Sunday School and then the teacher had her share the story with the children who were in class that morning. We'll probably continue to read the story with her for several weeks to encourage her to make progress in this area.

Here's the story (original text in bold, [comments plain text]). Feel free to copy/adapt it as needed for your own use.

I Love Sunday School!
My name is [child's name]. On Sundays my family goes to church. [picture of child, picture of church building]
We meet a lot of our friends there. [picture of people gathering at church, candid]
These are some of my friends. [pictures of several other children from Sunday School class - I asked the parents for verbal permission first]
I usually get to eat a snack with my friends and then we go to Sunday School. [picture of child eating snack - this is the schedule at our church, insert whatever activity immediately precedes Sunday School]
In Sunday School we read stories, sing songs, play games, and make crafts that help us learn about Jesus. [pictures taken of kids doing activities in class]
These are some of my Sunday School teachers. [our church rotates teachers, so I inserted pictures of each main teacher]
I know how to listen to my teachers. I sit in my chair with quiet hands and quiet feet. [picture of child sitting in chair quietly - challenging, but possible for our child. This is the part she's having trouble with, but we want her to know that we know she can do it.]
I can ask the teacher if I need help. [picture of child interacting with teacher - again challenging, but something she can do]
I can try to have fun with my friends when I listen and tell them what I need. [picture of child having a good time in Sunday School - emphasizes the rewards of good behavior]

It's important to note that the results may not be immediate from using a social story. Sometimes they are (the birthday story worked like a charm!) but sometimes the child will actually respond by pushing the limits more. The important thing is that the social story gives you common ground to return to. I find that the process of writing the text helps me understand what I expect her to do. This Sunday when our daughter started to have problems the teacher was able to say, "Now what did your story say...?" and it helped our daughter calm down more quickly than previously. Hopefully eventually we'll avoid the trouble to begin with.

Friday, May 1, 2009

Sovereignty

In looking around for some other blogs to follow I found desiringGod (from John Piper's ministry.) This article by Abraham Piper which takes my own posts on inclusion one pretty uncomfortable step further. We like to think of disabilities as "mistakes"...unfortunate occurrences as our children are developing. To recognize that God is in control of these "mistakes" is shocking and controversial. Yet we want God to be in control of everything else. The amazing thing is that His sovereignty is total whether we can accept it or not. He can use "special needs" to teach all of us more about Him, and to make us all aware of our great need for Him, a need that we all share.

If you have time to listen to the testimony of the dad's talk that this article is summarized from, it will give you new perspective on being a special needs parent.

My earlier series on inclusion starts here.