Sunday, December 27, 2009

Sunday Digest 12 - 2009 In Review

As the year draws to a close and everyone is making their year in review best of the best lists, I thought it would be fitting to pick out five great links I've found in the process of writing Simple Life posts. A digest of digests if you will. All but the last are already in the archives but are worth checking out again...

1) Originally posted June 21, 2009: Dads are Vital to Special Needs Kids!

2) Originally posted July 12, 2009: Some good advice on what to do with the inevitable looky-loos.Smile and say hello. This may give them an awareness that they are staring and that you've noticed. I love it.

3) Originally posted August 2, 2009: ...beyond school, "What do you want to be when you grow up?" perhaps a conversation starter for you and your special needs child. I think at last report our daughter wanted ME to grow up to be a firefighter...I'll have to see what she says now...

4) Originally posted August 23, 2009: I have been curious for some time how autism and other special needs are affecting developing countries. This post on Hopeful Parents answers my question and shares about an organization that is directly working with parents in these countries to help them learn strategies to help their children. Amazing.

5) This is a new one, a link to a You Tube video a friend of mine posted on Facebook. It's not truly special needs related (except that it uses augmentive communication technology, I guess) but it is FUN, and everyone deserves to have a little FUN sometimes. Besides, the message is important...He shall reign forever and ever...even in 2010!

Happy New Year!

Thursday, December 24, 2009

A picture is worth...

a thousand words, or so they say...In celebration of that, in hopes that I might make it to bed before midnight for the first time in weeks, and in hopes of wishing all of you a very Merry Christmas I give you this...We'll return to our regularly scheduled program on Sunday.

Monday, December 21, 2009

Remembering Christ at Christmas

This past Sunday I taught Sunday School for my daughter's class. I've been working out a new curriculum for our younger children's class (ages 4-7) to try to make things work better for the children and the teachers. Someday I'll share more about that, but for now I wanted to focus on a lesson that I learned. Starting the last Sunday in November we've been talking about Christmas in Sunday School. November 29 was the first Sunday of Advent, so we made advent wreaths and talked about how God told the prophets that Jesus was coming 700 years before He was born. December 6 we talked about how God sent an angel to tell Mary that she would give birth to Jesus. December 13 we talked about how Mary and Joseph went to Bethlehem and that Jesus was born in a stable. This Sunday I told the story of the angels telling the shepherds that Jesus had been born, and that the shepherds went to Bethlehem to find Jesus (scroll down for the cotton ball sheep). Through all of these stories and crafts we've been focused on telling the children about Jesus being born, but I wondered if they had connected Jesus' birth with Christmas.

At the end of my story I asked the children if they knew what was happening on Friday.
"Christmas" they all shouted..."Santa will come"..."We get to open presents"...etc. I tried to draw the connection back to Jesus' birth, but their minds were full of Santa and presents and Christmas trees...We continued the lesson, but I struggled with making that connection stronger for them.

I am not one to rule out Santa as part of our holiday traditions...this is how my very strong Christian parents raised us. We had Santa gifts, put out the plate of cookies, and as we got older my brother and I schemed to try to catch Santa in the act, but we also always knew that the far greater reason for Christmas was to celebrate Jesus' birthday. As I reflected on that heritage I remembered some dear friends who used to share their home with us on Christmas Eve. In their family they had a tradition of making a birthday cake for Jesus and sharing it together on Christmas Eve.

Now, my daughter loves birthdays...her own and anyone else's, and there is no more hard and fast way to prove that it's someone's birthday except to make a cake and sing the Happy Birthday song to them. I googled it and there are a lot of ideas of just how to do this. I'll probably try a much simpler version of this one. We'll be trying this out this year to see if we can't refocus our child's mind, if ever so briefly, on the Greatest Gift that we received that first Christmas, rather than the trinkets under the tree. I'll let you know how it goes.

Friday, December 18, 2009

1 in 110

The CDC issued a statement today summarizing its current findings that the frequency of autism has increased 57% in the last 3-7 years. Almost 1% (1 in 110) of children have some form of autism. For boys the risk is even greater, 1 in 70. For those who claim we are just diagnosing autism more than we used to, the report addresses that question and finds that argument can not fully explain the dramatic increase. One of the key concerns is that children are still being diagnosed too late to benefit from early intervention therapies. The average age of diagnosis is 53 months. Ideally children should be diagnosed by 24 months to fully benefit from therapeutic strategies.

I'm sure I could go on and find other disorders and diseases to compare rates with, but:
  • I don't particularly want to get into an "us vs. them" stance here. It's not that I feel autism is more important than these other medical issues (Leukemia, after all can be fatal...)
  • I don't really want to make it into a numbers game.

I do have two objectives in mind in highlighting this news story:
  • First, although the rate of occurrence of autism is so high, by and large people do not realize how increasingly common it is. I recall having a conversation with a friend who is thinking about starting a family rather later than usual and one of her main concerns with the increase in Down Syndrome among mothers over the age of 35. When I pointed out the statistics of Down's being 1 in 800 versus autism being 1 in 150 (this was several months ago) she was surprised at the latter. Just remember 1%. Theoretically when looking at a group of 100 children, chances are one of them has some form of autism.
  • Second, although the rate of occurrence of autism is so high, most people do not know what it looks like or what it means. Part of this is because each person with autism is uniquely affected by the disorder, so our usual attempts to put people into neat little pigeon holes doesn't work very well. However, in my opinion the other reason we don't recognize it (and I think it leads to later diagnoses) is because we have over-simplified it a bit. Everyone knows "the signs": child doesn't smile, doesn't babble, doesn't interact, bangs head/flaps hands, etc. The truth is it doesn't always look like this. I like to look at four developmental areas related to autism:

1) Language delay, sometimes with echolalia – sometimes
language delay occurs for other reasons, but especially if it occurs with echolalia there is cause for concern. (Can be observed as early as 18 months)
2) Sensory integration – overly strong or weak reactions to visual, aural, oral, tactile, olfactory or movement stimulation, and/or difficulty manipulating one’s own body. (Can be observed as early as 2-10 months)
3) Perseverative Play – Playing with toys in strange ways and (sometimes) for long periods of time. Spinning, lining toys up, looking at things from a funny angle, banging or throwing. (Can be observed as early as 9 months)
4) Social interactions – Difficulty learning the invisible rules of social interaction. Please note that many people with autism enjoy being around other people, and in fact in some cases overly depend on the stimulation that attention from peers and authority figures provides. Just because they enjoy being around people does not mean that they understand easily how to interact with others, especially peers. Subtle complexities of sharing, waiting for a turn, using words to say what you want, and asking for help when a mistake or problem arises, must be explicitly taught and not just learned through the usual school of hard knocks. Most of this is hard to
observe until age 3-4 years when children begin to spend more time in social settings with peers unaided by parents.

In my opinion if a parent asks a doctor about any one of these areas of development, the doctor should ask about the other three, and if there is reason for the doctor to be concerned about two or more of these areas then a referal to a specialist should be written. In particular, the first three categories which are easier to see in a younger child should be highlighted in any developmental screening performed by a doctor.

Sadly, the increase in autism can be greatly misunderstood as well. I believe this article may be an example of this, but I'll let you be the judge.

This is a much longer post than usual, and I'm not sure I've even scratched the surface of what I wanted to say on the subject, but that number 1 in 110 is heavy on my mind. I hope by reading this you will also become more aware of the challenge we all face in that statistic.

Tuesday, December 15, 2009

Gentleness through the Spirit

I doubt that many people think of the word gentle when they try to describe God. Awesome, powerful, sovereign, loving - sure, those would be on the list, but gentle? This is the same God that opened the earth to swallow up some of the Israelites who were rebelling and questioning Moses' leadership (Numbers 16)...the same one who struck Ananias and Sapphira dead because they lied about how much they sold their property for (Acts 5). There was a time when our society lived in fear of God's wrath. In more recent years people focus on the other extreme; wanting God to be a push over who makes suggestions but doesn't expect us to take them to heart. Some might call that gentle, but this is a misunderstanding of that word.

Gentleness is defined as "being moderate in force or degree so that the effects are not severe." (Encarta Dictionary) It was recently explained to me as the correct center of the anger spectrum from never being angry on one end, to being angry all the time on the other end. In other words, it is knowing when it is appropriate to be angry and handling one's anger appropriately. It is probably the fruit I need most to ask the Holy Spirit to provide in my life.

Some examples of God being gentle from scripture are:
  • I Kings 19 - After being present for God totally defeating the prophets of Baal (I Kings 18) Elijah gets a nasty note from Jezebel and decides he better run for it. Early on he wants to give up and God sends an angel to him with food and drink (twice!). He runs some more, then decides to hide in a cave. God asks him what he's doing there and Elijah explains how bad things have gotten to God. God invites Elijah to step out of the cave and watch him pass by. Big wind comes, then an earthquake, then a fire. After the fire came a gentle voice. God again asks Elijah what he's doing there and Elijah complains some more. Then God tells him to go back and get ready to retire, passing on his ministry to Elisha. When Elijah was ready to throw in the towel in spite of having witnessed one of the most dramatic miracles and victories of all time, God could have blasted him with the wind, or the earthquake or the fire. Instead He uses a gentle voice to tell Elijah his next steps, though at least one of those would be somewhat painful - laying aside his prophet mantle. God says the hard words, but He does so in a way that is easy to accept.
  • Matthew 11:29,30 (NIV) - "Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." This is a promise to the weary and burdened. Jesus offers us His yoke. Please note that there is a yoke, but it is an easy yoke, and it is controlled by our gentle Lord.
I can both know and emulate this gentleness in my own life. Amen.

Saturday, December 12, 2009

Stamping out the "R" word

Here's an action post that every single person, no matter their situation, can play a part in. I have seen several other blog posts about this topic recently. Some students in Manilus, New York, decided to take some action. They've put together a web-site (We R above) to champion their cause. The site includes video interviews of students, including two special needs students, explaining why no one should use the "R" word as a derogatory label in bullying, teasing, or even joking with someone. Everyone can take the following steps:
  • Take a pledge to stop using "retard" and other words that are hurtful to individuals with special needs. My personal nemesis is "crazy" it slips out before I can realize how it might sound to a person struggling with a mental illness.
  • If you slip up, apologize, and start over.
  • If you hear another person using derogatory labels, call them on it (politely) and explain how damaging this kind of language can be. Tell them about We R Above if you're not sure how to put it into words yourself.
  • If you use social media like Facebook or Twitter, spread the word around.

I realize that any label can be turned into a verbal slap. I've seen people using the usally PC "special needs" inappropriately, too. We need to guard our tongues, and our pens (and keyboards) and remember to consider others' needs and feelings above our own.

Wednesday, December 9, 2009

Book Review - The Little Drummer Mouse

In the spirit of The Season I thought I'd post a review about a Christmas book. It is not exactly addressed to special needs, but it does address issues of self worth and giving our best. Mercer Mayer's "The Little Drummer Mouse" is the story of the littlest mouse of a large brood who is always being teased because he is small and slow. His mother, trying to keep him safe gives him a drum to play on so she'll know where he is. He loves his little drum and plays on it all the time which in itself adds stigma from his peers and gets him into trouble with others who do not understand. The animals learn that The Greatest King of All is going to be born and they set up a big celebration in His honor, but they do not recognize the poor man and woman who travel through their forest as royalty. The littlest mouse figures it out and goes on his own to find the new baby "just for a peek". There he has the opportunity to play his drum for the baby and inspires everyone present to make music for the baby. Thus the slow, little, misunderstood mouse becomes a leader and gives his best to the King.

It is not a strictly Biblical account of the Nativity, but the message that God cares deeply for the least of these is a strong one.

It is a touching story, and one that I hope will encourage my daughter to give her best even when she is feeling small, picked on, and mistreated. Even the slowest among us have a special gift, one that we all need to receive...a reminder that we too can always give our best.

I want to close by asking each of you who reads this post to pray for one among our ranks who is desperately hurting. I cannot share details, but God knows those. Prayer is an amazing gift that you can give anonymously.

Sunday, December 6, 2009

Sunday Digest 11

1) As a follow up to an earlier series of posts on achievement (starts here with links at the bottom for parts 2-4), I wanted to let you know about the new website for the film Race to Nowhere (formerly known as Slipping Behind). There is a petition there you can sign if you feel the importance of refocusing our educational system so that children can learn and be valued as individuals.

2) As a follow up to Thanksgiving, check out these thankful moments gathered by Autism Speaks from parents, grandparents, teachers, therapists and others who love someone with autism. Warning: you may need some tissue handy.

3) These tips for supporting autistic family members through the sometimes hectic holidays seemed generally helpful. We're trying the stepwise decorating idea just out of took us so long to find everything yesterday that we didn't have time to set it up. Today the tree is up, but only half lit. You get the idea.

4) On a related note, here is a gift guide for special needs children ages 1-5. Over 5? - sorry you're on your own. Wait a minute!! Not fair!! Seriously - if you know a good resource for older children please leave a comment with a link below!

5) Not exactly Christmas music, but an interesting idea for letting special needs children experience the ability to make music.

Thursday, December 3, 2009

Childlike Gentleness - Fruit of the Spirit Part 8

It seems like I've been teaching the concept of gentleness to my daughter since she first found her fingers. I read somewhere in those early days to not say "No" too often because young children eventually tune it out. I came up with a couple of alternatives. When the little lady was about to leap before looking I would say, "Careful!" as a cue to her to rethink what she was about to do. When she was being too rough with a toy, a book, my hair, whatever, I would say, "Gentle!" and try to model for her how to properly treat that object. Sometimes it worked. I still use this one word reminder for her when she is hugging her brother a little too tight or patting Grandma's dog excitedly, and therefore a little too hard.

There are so many things that we need to be gentle with. It seems that we mostly focus on the physical and external, the material and the personal. We strive to teach our children early that hitting is wrong, that we need to use gentle hands. We need to remember that there are tender hearts and feelings as well. We have noticed with our son that he is much more sensitive to scolding than the girls are. Often if I say no to him even in a conversational tone his little feelings are crushed. Although I still must train and discipline him I will need to remember his soft heart in this area.

I recently heard a speaker say that gentleness is the quality of knowing when to be angry and handling your anger appropriately. If there are two unhealthy extremes: being angry all the time and never being angry, gentleness is the pivot point of perfect balance. It stuck in my brain because I've been asking God to work on my anger for the last year or so. Amazingly He has, although there's definitely still stuff to work on. What is real and true is that my daughter and her needs are the tools that He is using to make this area of my character what He wants it to be.

So who is teaching whom about gentleness, anyway?

Monday, November 30, 2009

Star Charts

I've waffled a bit about whether or not to post this tip...we tried it for a while and really liked the results, then it sort of fizzled. Sort of like one of those really fancy fireworks that really make you ooh and ah and then they're over before you can catch your breath. Still I decided it might work better for others and should pass along some of the unique pieces that (briefly) made it work really well for us.
Sometime over the Summer my daughter decided that she wanted to be in charge of putting away her own clean laundry. Needless to say I was thrilled...this was the first sign of her being ready to take on any "chores" or as I like to call them family contributions. Then she got intrigued with my trips to the compost pile and started volunteering eagerly to take out the vegetable peels, etc. We were so happy with these developments and praised her profusely each time she did a little job. I even bragged about her to another grown up which always makes her day.

Somehow (who knows how except that maybe she got bored with the deal) it gradually became harder and harder to convince her to keep doing these things. Soon she was resisting these tasks which previously she had been so excited to do. Following some discussions with school staff about trying a positive behavioral support (star chart) system with her at school, we decided to try out something like this at home. I made a chart with pictures of each of the tasks she had previously enjoyed doing: putting away clothes, cleaning up toys (actually this was a mommy dream task) , making her bed, taking out compost, clearing her dishes after meals. I explained to her that each time she completed one of these tasks we would put a star on her chart and then after she had earned so many stars she could choose a reward. We developed a reward system that we were willing to live with where she could either turn in a small number of stars for a small reward or save up stars for larger rewards. I fully expected her to turn in her first four stars for four M&M's (her favorite treat) but she surprised me. She saved up 16 stars for a trip to the neighborhood school yard with Mommy. Later she saved up even more stars for a balloon from the grocery store and later a trip to a frozen yogurt place. We were excited to see her ability to delay gratification, and we were also happy to have a relatively neutral way to encourage her to do her "jobs". When she said she didn't want to do something we'd say, "Oh, you don't want a star?" Generally she would change her tune and either do her job right away or ask to do it when she finished what she was already doing.

So why my ambivalence about this seemingly successful program? It seems to have stopped working. After her third reward and a smattering of stars earned toward a fourth she just doesn't care anymore. What happened? I have a couple of theories. First, the staff at school implemented her star charts there. I think the effect was somewhat diluted. Stars, stars, everywhere, so who cares? Frankly I'd rather have it keep working as well as it does at school, so I haven't pushed the issue at home. Second, it takes a lot of effort (at least with this child) to keep the program going. For the most part I was the one reminding her that she had earned a star and putting it on her chart and asking her if she wanted this reward or to keep saving stars. Somewhere in there Halloween and a few other chaotic events happened and I couldn't quite maintain the level of focus needed to keep it going. I do hope I'll remember to try this again if it seems like we need the extra motivation factor. Maybe it would be good for Summer months when school is not dividing the spoils and I (supposedly) have less on my to do list.

The key factors to success seemed to be:
  • the tasks were things that she had already shown a great deal of interest in

  • the rewards were things that we knew she would enjoy and look forward to earning

  • the choice was hers - to do the task or not, to save the stars or not, she had a great deal of control over the program.
I should also note that all is not lost. In general her resistance to doing the tasks now seems diminished, and though she still sometimes says no and offering her a star does not change the answer, it is easier for me to shrug and say, "Oh, well!" and perhaps that in itself is a good outcome.
I would love to hear your thoughts on such programs...have they worked for you? If so, what are the keys to success? If not, why not? What are the pitfalls? Feel free to leave a comment!

Friday, November 27, 2009

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!

Health Care Reform? Really?

I have been staying away from the whole health care reform debate. As much as it is a hot button topic these days, I do not intend this space to become too politically charged. I know there are good people who firmly believe they're right on both sides of the issue. I did encourage you (as some of those good people) to get involved in the process and make your voice heard. However, I have been seeing this headline in numerous venues, so I think it must be a real problem regardless of your political stance. "Plan to Restric Health Accounts Will Hurt Disabled." In case you are worried about bias, you can read another version of the story on The Basically it reads the same. Parents of special needs children who use their Flexible Spending Accounts (FSA)to cover education and other treatments that are not covered by medical insurance are going to have this tax shelter stripped away for all but $2500 per year of their expenses. This is only one small aspect of the Health Care Reform that our leaders are now considering. Given that they're supposedly "fixing things for those who are currently burned by the system" one can only hope that they'll take one look at this specific "reform" and drop it like the bad idea it appears to be. Evidently the reformers worried that people racing to use up their FSA funds by the end of the year (a requirement of such funds) contribute to "over-consumption" of medical treatments that health care reform is supposed to be addressing. They decided to cap the funds at $2500 so that people will only over-consume $2500 worth of medical care by the end of the year. Since most people already self-limit their FSA to $1500 it seems like kind of a moot point, unless you happen to be the parent of a special needs child who maxes out their FSA every year to help pay for out of pocket treatments (which I hear can be not just elective therapies but also medically necessary procedures). Suddenly $2500 is just a drop in the bucket. Special needs families have enough hurdles to get over in an ordinary year without having the government make poor choices like this one. If you're not already involved, it's time to get involved. There are other aspects of the reform being considered that might be more compelling...this one just seems the most obvious reason to put the brakes on the whole process and really think about what we're doing. Really!

Tuesday, November 24, 2009

God's Faithfulness - Fruit of the Spirit Part 7 cont.

We must remember that the fruit of the Spirit is not something we conjure up on our own. It is not by a gut-wrenching, adrenaline forcing, caffeine-fueling drive to meet up to God's standard on our own steam. Time and time again I must remind myself that I will never meet that standard on my own. I must allow Him to supply the power and character to demonstrate His spirit moving in my life. I begin with this thought because as I mused on the idea of faithfulness and what God teaches us about it in His word, I realized that it is His own character, demonstrated in the stories and teachings of the Bible, as well as in our own lives that shows us most what exactly the fruit that He wants to make evident in our own hearts should look like.

You could pick any story from the Bible, and find at the root that it teaches God is faithful. He is always true to His plan to bring us into fellowship with Him. First by creating us, then by withholding judgement until He could make a way to redeem, sanctify, and ultimately glorify us. Every moment of history points to His unending desire to know us and to have us know Him.

Lamentations 3:22-23 (NIV) says, "Because of the LORD's great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness." This verse inspired the great hymn, "Great is thy Faithfulness" which I always find to be so encouraging.

Great is thy Faithfulness, O God my Father
There is no shadow of turning with thee.
Thou changest not, thy compassions they fail not
As thou has been, thou forever wilt be.

Summer and Winter and Springtime and Harvest,
Sun, moon, and stars, in their courses above,
Join with all nature in manifold witness,
To thy great faithfulness mercy and love.

Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide.
Strength for today and bright hope for tomorrow
Blessings all mine, with ten thousand besides.

Great is thy faithfulness!
Great is thy faithfulness!
Morning by morning new mercies I see
All I have needed thy hand hath provided
Great is thy faithfulness
Lord, unto me!

And what better time of year to consider just how faithful God has been to us. Considering how faithless we sometimes are, and yet he continues to pour out on us His great love, His ever new compassions, His own hand providing what we truly need. I hope each of us will be able to reflect on His faithfulness and at the same time understand that He wants to impart that character onto us, His children.

Happy Thanksgiving!

Saturday, November 21, 2009

Warm Coat Drive

Here is a twist on advocating for special needs children. How about helping them learn that they can help others? This article highlights an after school program for special needs students that is near us. Last year the students started a service project to collect 100 coats for the One Warm Coat project. They were able to collect 273 coats and donate them to the Bay Area Rescue Mission. Some of the students went on to volunteer with other non-profit groups. This year the students are planning another coat drive and hope to exceed their collection from last year.

Some action steps to consider:
  • If you live in the San Francisco Bay Area consider donating a coat to these students. Gently used or new coats are welcome. Donations can be delivered to George Miller Center, 2801 Robert Miller Drive, Richmond, CA by December 19. For more information call 510-374-3981 or send an e-mail to clam at arcofcc dot org.

  • If you don't live nearby, look around for other programs that work with Special Needs students and want to encourage them to serve their community. Support a program that is already in place or help get one going.

  • If you are a special needs parent, consider how you can encourage your own child to serve his or her community. A couple of years ago we went to an event where we helped make care packages for needy children. At that time the simple act of putting the package together and drawing a little picture for the recipient was about all my daughter could understand, but it was a start. She still tells me sometimes that she wants to give things to someone who doesn't have one of those (sometimes it's a sibling, though, so I'm not sure she understands the idea of charity :-). I'm sure this is an area we'll continue to work on, and the upcoming holiday season offers a great opportunity to do so.

Wednesday, November 18, 2009

Book Review - Playing, Laughing and Learning with Children on the Austism Spectrum

This is a book I bought shortly after we learned our daughter's official diagnosis. I will make a disclaimer before I continue that I have not read all of it. In all the time that I've owned this book as a resource I haven't really plumbed its depths, and I think that is because of two factors. First, it really is deep in terms of the amount of information that is contained in this relatively slim volume. There are hundreds of well-explained, well-organized, researched and documented effective ideas for entering into an ASD child's play life, and that's just in the part that I have read. Second, it is not exactly the type of book that one sits down and reads cover to cover. It is more of an encyclopedia of play. Trying to figure out how to use music? There's a chapter for that. Interested in board games and puzzles? There's a chapter for that. Computers, toys, books, and even the dreaded television are addressed. It is not a page turner, but it is something that one could turn to for good solid ideas of how to address a certain area of play.

The reason I bought the book is because I have always found it challenging to play with my daughter. That may sound kind of shocking to some people. She has always been very content to play on her own, so if I have projects to keep my busy (and usually I do) a lot of time can go by before I remember to check on her. It is an intentional act on my part to invade her space and enter into play with her. I had hoped that reading this book might make it easier to break down the walls. What reading the book (or part of it) did is confirm that the walls need to be broken down and it does take effort and it may not ever be "easy". My experience has taught me that consistently making that effort makes is easier to continue the effort and, gradually has meant that my daughter will make more of the effort from her side of the wall.

The other day she was so eager to "play" with me. She just wanted me to accompany her in picking some berries from a bush in our back yard and crushing them with one of her sandbox toys to make "applesauce". Recognizing this as a major step in our relationship - to have her invite me to join a pretend play activity with her - I knew I had to respond to that effort. The other projects were set aside...this was important!

So if you need some tools to start chipping down the walls, this book is for you!

Sunday, November 15, 2009

Sunday Digest 10

I am trying to stay in denial that "the holidays" are just around the corner. My holiday season actually begins back in September when my husband's birthday kicks off a monthly cascade of big events that I never feel quite prepared for...Halloween, Thanksgiving, Christmast, all three kids birthdays, Valentine's Day...then I can breathe. I guess we've made it through the first two events, but those are just the lead up to the big hitters. I'm not completely following a holiday theme with this post, but I guess in some attempt to get myself in the spirit (read panic) of the season, I'll point you to the following links:

Holidays/Family or Social gatherings in general:

1) It seems like the holidays often make a perfect storm for hurtful comments and the ensuing havoc on personal relationships. This article helped me think about some ways to respond and offers advice on what to say "instead" of hurtful (even if well-intentioned) comments.

Thanksgiving "related":

2) One thing I'm thankful is around for my child today: Matteo's Dream playground, right here in our area. A while ago I blogged about a park like this up in Seattle. A friend of mine who helps organize Buddy Play invited us to attend an event at Matteo's Dream to make me aware of this special park just 20 minutes up the road for us. We went and of course my daughter loved it. She would live at a park if we'd let her, and one of her best buddies was there to boss around. One point that I hadn't considered before about a completely accessible playground is that parents or grandparents with physical challenges can more easily interact with their children, too. I saw a grandmother there with her motorized scooter and she was able to keep tabs on the child she was supervising.

3) One thing I'm thankful will be around for my child in the future: Capernaum, a ministry of Young Life that reaches out to special needs students. A friend of mine told me about this ministry some time ago, and this article jogged my memory. This story is specifically about a Capernaum group starting in Tempe, AZ. You can find out more about Capernaum at large here.

4) Some quotes and ideas about keeping the focus of Thanksgiving on gratitude, not turkey. I do not theologically agree with all of the sources of these quotes, or even with all of the quotes, but the goal of remembering that Thanksgiving should be about giving thanks is key.

Preparing for Christmas:

5) This year Advent begins on November 29 - the Sunday after Thanksgiving. I think Advent can be an excellent way to keep the focus of Christmas on Christ rather than the presents under the tree. This article gives some suggestions of ways to celebrate Advent with your child. I think they could be easily adapted to special needs children. I'm hoping to try one of the calendar ideas with my daughter. I'll let you know how it goes...

Thursday, November 12, 2009

Childlike Faithfulness - Fruit of the Spirit Part 7

We are nearing the end of our journey through the Fruit of the Spirit. It's been an amazing exercise to consider how God is using our children to teach us the character qualities that He wants to supply in our lives. Faithfulness as used by Paul in Galatians 5:22 is the Greek word pistis, which means conviction of truth, reliance upon Christ for salvation, and constancy in such profession. Faithfulness is a challenging proposition these days. At the risk of being considered dogmatic, we hold to the central root of our faith that one comes to salvation through Christ alone.

My daughter has not yet accepted this truth as her own. This is one of the primary reasons that I started this blog. I have big questions about how to impart faith to her in view of her learning differences. She is immersed in a community of faith. We attend church each week. We are working on making Sunday School a place that will meaningfully communicate God's truth to her. At home we pray before meals and before bed. I have recently asked her to pray for specific friends or problems, and I try to point out miraculous things we encounter along the way (like the day we found important confidential papers that had fallen out of our stroller about six hours earlier). I hope for the day that she will ask more questions about who God is, why Jesus came, and what it can mean for her. Since she just recently started asking even concrete questions I sometimes wonder if I should just be initiating the conversation more, but if she isn't asking is she really ready? The debate just rages in my mind until I entrust even this significant piece of her future to the only One who already knows.

Still this child can teach me some important things about faithfulness. Regarding the conviction of the truth I can learn a lot. My daughter is among every other quality very truthful. I don't think the idea of falsehood has even entered the edges of her understanding yet. Even when it would serve her own interests (of which she is keenly aware) she tells the truth. When I hear one of her siblings crying and I suspect she has had something to do with that I can ask her, "Did you hit him?" and she will say "Yes, I hit him." and off to the time-out area we go. She is also pretty firmly fixed in what she thinks is right. There is very little gray in her universe. Items are liked or not liked, rules (though challenging to obey) are powerful, and friends are forever. While this steadfastness can lead to problems - e.g. in a sea of children insisting on playing with only one because "she's my friend' - it can also be inspirational to watch. Do I speak truth with so little self-consciousness? Do I hold fast to what I believe is right? With God's graceful provision I can!

Monday, November 9, 2009

School Parent Communication

Since some readers are probably visiting from the Moms' 30-Minute Blog Challenge, I should probably start by explaining a bit. Those of you with children old enough to be in school may have a pretty good idea of how your child's day at school goes because they will tell you about it. Some may not tell you when you ask, "How was your day?" but if you listen long enough they will tell you that they played with so-and-so at recess, they didn't like the spelling test, and their friend got in trouble for passing notes, or whatever. This is typical child-parent sharing of information. For moms of atypical (special needs) children, this would be a dream come true. Many special needs children are non-verbal. For others the effort to carry on a conversation is so great that they may share only a few broad strokes of their day and the details are left to the imagination (of the parent...).

My daughter just started Kindergarten, and although she is very verbal (non-stop sometimes) her conversation skills are not typical. Between pragmatic speech delays and social skill delays my idea of how her days at school were going was very vague. So talk to the teacher, you might suggest. Our Kindergarten classes have 20 students, which means 20 sets of parents who jockey for the teacher's attention. Because of my daughter's support programs at school, we only see the regular classroom teacher at drop-off, which halves our opportunity to ask questions. There's also a resource room teacher that we need to talk to. To complicate things even more, some of the information we need to know is whether or not there were any negative behaviors during the school day and how they were handled. We have learned (the hard way) that such issues should not be discussed when my daughter is present, even over the phone. In short it was very hard to know what was going on at school and how we could work with the teachers and other school staff to support our daughter.

One of our friends suggested using a "communication book" where we could write information for the teachers and they could write information for us. I spent a little bit of time researching things on the Internet and also picked up some ideas from an IEP (Individual Education Plan) workshop that I attended. None of them seemed to fit our exact situation. I wanted to meet the following criteria:

  • Something that would be quick and easy for the school staff to do every day.
  • Something that would give us information on both positive and negative behaviors.
  • Some flexibility in case school staff needed to add important information.
  • Something with a hint of how she was doing in terms of academic work.

Here's what I came up with:
I bought a cheap photo album with a cute girly cover. ($2) - the kind with plastic pages and clear pockets.
I made some slips of paper (some labeled with general classroom and some with resource room) that fit into the photo pockets. These say:
She earned __________ stars today.
She was put on timeout ___________ times because ____________.
She finished all most some of her work today.
Other comments"

To clarify - the stars and timeouts are defined pieces of her behavior support plan. The key is that I'm learning information on how well she did and if any problems came up.

I put in dividers for each day of the week, including Saturday and Sunday. On weekend days I write a brief note about things we did and any behavior issues that occurred at home and how we handled them. Each weekday I make sure the book gets into her backpack and at drop off I try to make sure I see her hand it to a teacher or aide. Each day the teacher or aide fills in the blanks or circles the choices as appropriate. If they choose to do so they can add their own thoughts at the bottom. When I pick my daughter up quite often she hands it directly to me and I flip to that day to see how many stars she earned. I beam at her and say, "WOW, X stars!, that's great sweetie!!". I also silently read about timeouts and can judge from her attitude at the moment about how I might need to proceed with the rest of our day, but I do NOT comment aloud on this piece. It is enough that I am aware of it. If I see any trends developing I will be able to contact the teachers for more information or to address my concerns.

This simple tool has made a huge difference in my confidence. I believe it has been key to keeping my daughter on track behaviorally. I appreciate the school staff's willingness to do this each day.

How do you find out about your child's day at school?

Friday, November 6, 2009

Inclusion on the Football Field

There is all sorts of bad news out there today. You can find it just by flipping on your TV, your radio, or your computer. It's too easy to get run over by all of that and start to think there is nothing right in the world anymore. While pondering what "news" story I should blog about today I wondered if I would find some special needs connection to some of the headline stories out there, but even if I did I wasn't sure I wanted to highlight any of them. As I scrolled through my google reader alerts I bypassed several sad stories. I needed to find some good news for myself and also for you.

I found it.

This story is one that many of us can only hope will be played out in our children's future. You can find text, comments, and video that honors a boy with special needs for his faithful work as the manager of his middle school football team. I don't know how you remember middle school, but I recall it as a place where differences are unwelcome and ostracized. This school, this team does not fit that mold. Perhaps it is due to the strength and mentoring of the coach. Maybe it's the supportive mother. Maybe they are just good kids. No matter what it is you can see in the video how the boys of this team truly accept Matthew and enjoy being with him. I don't think it's magic...I think it is good character on the part of each person in the scenario.

It reminds me of another story I've seen on facebook several times now about a high school basketball team with a similar attitude. You can see that video here. Prepare to cry tears of joy...even if you've seen it before.

These kids, overcoming all obstacles to find a place of acceptance and happiness, are a reminder to all of us that the good is still out there and we need to find it and help it multiply.

Tuesday, November 3, 2009

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.

Saturday, October 31, 2009

Puppy Love

We spent some time in the last week taking care of a couple of dogs for one of our neighbors while they were out of town. It was a lot of work, but also a good experience for my daughter. She now knows how much time and energy goes into really caring for a dog. Exercise, feeding, cleaning up after them, she helped me do all of these each day. I was surprised (and yes a little chagrined) when at the end of all of that work she was still telling me that she would like to have a dog. For now I am putting her off. I've given her a definite date far in the future that she can ask seriously about getting a dog. She already has worked out what color she wants it to be, what gender she wants it to be, and she has even picked out a name. Heaven help us.

I've posted before about the use of assistance dogs for children with autism. If and when we embark on the adventure of dog ownership I would love to find an animal that is suitable for use as an assistant, or at least one that is therapeutic, with a calming and regulating effect. All of this thinking about dogs made me really excited when I found this link to a story about the Lions service club which is now training service dogs for children with autism. The Lions have been involved with training service dogs for visual and hearing impairment for 25 years, but due to increasing rates of autism they have added a program to train dogs to meet this special need. You can check out the website for the Lions Foundation of Canada Dog Guides here.

According to their website there are plenty of ways that you can get involved:
  • Make a donation - The Lions Foundation receives no governmental assistance.
  • Adopt a puppy - Literally or figuratively. For a donation of $100 you can help defray veterinary care for a future guide dog and receive a certificate commemorating your assistance. Future guide dogs also require special training and socialization in their first year and the Lions Foundation uses foster families to provide that environment for their dogs. You can learn more by looking at the...
  • Opportunities page - where both paid and volunteer positions are listed, along with application form links.
  • Also check out the wish list.

Wednesday, October 28, 2009

Book Review - When I Feel Angry

After a day like today I need this book almost as much as my child does. I love the title. It is so realistic. It doesn't say "If I Get Angry" or "When I Am Angry" or "I Shouldn't Get Angry." This book assumes, rightly, that your child will feel angry; it emphasizes that this is a feeling, not a state of being; it even acknowledges that there are times when anger is a fine response. However, it encourages positive ways to work through the anger - taking deep breaths, getting some exercise, or finding something fun to do (distraction!).
I hope I modeled this well at least once today. We were decorating Halloween cookies and my daughter really wanted some of them to have spider webs on them. In my rather limited decorating repertoire this was going to be challenging at best, plus the cookie decorating was supposed to be a structured activity to keep her busy while I was making dinner. Anyway I attempted the spider web but the decorating trip clogged and my attempts to clean it out didn't help. Meanwhile dinner was waiting on the stove and the twins were dancing at my feet wanting attention, too. I said, pretty calmly, "I'm going to have to stop working on cookies now. I'm getting too frustrated." Then I turned my attention to dinner. My daughter was a little upset that we had to stop, but while I finished dinner we processed it a little bit and I emphasized that sometimes when we are getting frustrated we need to take a break.
The story book follows the adventures of a cute little bunny girl as she realizes that some things that make her angry can't be fixed, but some can. She learns to get help figuring it out and to spend time talking and listening to work things out. The pictures are all darling. The text, in my opinion, is written at a great level even for children with language processing issues. The ideas take a little practice to remember and act on in the heat of the moment, but they are all solid re-regulating ideas.


Sunday, October 25, 2009

Sunday Digest 9

I don't think I ever realized what a big deal Halloween has become until now that we have a child who is truly old enough to want to participate. This year she will be a ladybug again...wearing the dress up costume that a friend of ours gave her about 3 years ago. It still fits (barely) so I told her this is probably her last year to be a ladybug. Last year I convinced her to do something different and spent hours working with her to transform a produce box into a little orange car. This year...I don't have the energy for the convincing or the crafting.'s some halloween prep for you, special needs style:

1. Feeling crafty? This spider (or rainbow kitty) from Magic Marker Monday on 5 Minutes for Special Needs looks pretty easy to make. I'm thinking googly eyes instead of the tea light even easier and just as cute. The original version is here.

2. Lots of tips, costume ideas, safety notes, etc. I especially liked the wheel chair costumes link. Fred Flinstone - how fun!

3. As Christians, Halloween can be more than a bit controversial. To attempt to represent several sides of the issue, consider the scholarly approach. Or...

4. Perhaps the "no harm done" approach. Or...

5. My personal favorite, the turn it on it's head approach. [You'll need to scroll down quite a ways to the November 3, 2008 post, "Halloween on Oak Street"]

Friday, October 23, 2009

Goodness Gracious Child - Fruit of the Spirit Part 6

First I want to apologize for not being able to post this as scheduled yesterday. For some reason I could not log in to Blogger. Actually I couldn't even get to the log in page of Blogger. So to clarify, although the date of this post says Friday, it really is a Thursday Learning from our Children post...and continues in our series on the Fruit of the Spirit. Now back to our regularly scheduled program.

Once again I find myself in the midst of a mystery. How can a child with behavior problems be teaching me about goodness? This requires a little research. Let's go back to the Greek and see what Paul is really talking about here. The Greek word is agathosune (ag-ath-o-soo-nay) and guess what it means: goodness, virtue, beneficence. It comes from the word agathos (ag-ath-os) which means good, benefit, or well. All right then, what exactly do we mean by the word good. In this world of moral relativism, what does good mean, anyway? For such a small word, it seems it is hard to wrap it in a nice neat package. According to the En Carta World English Dictionary (1999) there are 33 uses or definitions! Here are three that jumped out at me when viewed through the prism of a child with special needs:

When used as an adjective:
  • indicating that something is approved of or desirable
  • having the appropriate qualities to be something or to fit a particular purpose
  • worthy of honor or high esteem
This is a paradigm shift. Did you catch it? If not, re-read the bullets then continue...
Goodness is not a characteristic generated by the individual. Rather it is a gift bestowed by the observer. To be specific: in the end it does not matter how many tantrums my little girl had today, the key is how I view her. Do I approve of her, find her desirable, remember that she was created for a purpose, and consider her worthy of esteem? These are my choices, not hers. I can choose to call her good when I remember how God looks upon me. Every person bears His image. Each of us is marred in some way by sin - our own and others' - but when He looks at us He sees Jesus. God knew that we could never be "good for" our debt of sin...we could never pay the penalty of not meeting His standard of "good - having or showing an upright and virtuous character" all the time. So He sent Jesus to cover our debt, and when we accept His payment He no longer sees the debts, just that Jesus paid it all. I can choose this same attitude toward my daughter. I can choose to see her goodness as a fellow image bearer of God. This really could change everything.

Monday, October 19, 2009

Taking Care of Yourself

One of our family's favorite things to watch on television is nature programs. I recall watching an episode of a show (I think it was one of the Most Extreme shows where they explain the habits of ten amazing animals) that talked about animal mothers who basically give up their lives so that their young can live. I remember being horrified at the process and wondering what broken strand of fallen nature had brought this about. Then about a year ago, a short time after learning our daughter's diagnosis with ASD, and while still nursing twins almost exclusively (no milk or formula) I commented to my own mother that I was starting to relate to those animal mothers. I felt like each week I was giving up a year or so of my lifespan, and I wondered how much longer I could keep up that pace. Things have improved since then, but I still find myself putting my own needs at the bottom of the list of things to take care of. Two months ago I started actively putting an end to this practice. I wanted to share several of the lessons I've learned along this journey.

  • Do something significant just for you at least twice a month. I started attending my writing group again each month, and I also developed a list of deferred self-care items that needed to be addressed. I've prioritized them and intend to deal with one item on that list each month until I'm back in the habit of taking care of myself.

  • Find windows in each day that you can slow down and regroup. Today I ran to the grocery store to pick up a few things and dropped off the dry cleaning. My husband was able to keep an eye on the kids while I was gone. This always makes the errands go a little faster, but at the end of the grocery run I realized I had been going full tilt all day long and I really needed to take an extra minute or two to prepare mentally for the rest of our evening. I popped a new CD into the car stereo and nibbled on a small treat I had succumbed to in the check out lane. It wasn't much, but those few minutes of just letting myself slow down rather than racing home to jump into dinner preparations, laundry, and dishes was key to handling all of those tasks with more grace and humor.

  • Set boundaries on activities that are draining. The last few days have been very hectic for our family - school events, church events, swimming lessons, meetings, etc. which has been leading to short nights, and long, busy days. When I mentioned that tonight was a blog post night my husband suggested that I should take a sanity fitting for my theme! This blog, however, is a commitment and I don't want to get off my three day schedule, so I decided instead to take up Steady Mom's 30 minute blog challenge. I usually write rather quickly but then spend time tweaking and fine tuning until everything is just so...who knows how much time I usually devote to a post, but Jamie suggested setting a timer to 30 minutes to put a definite end point on "screen time" and increase "face time" with those we love. In my case I think the increase will be in pillow time!

  • Take care of your physical self. When was the last time you had an eye exam, a dental check-up, an annual physical? Are there aches and pains you are ignoring until (fill in the blank) happens? I spent 5 hours in the dental chair last week because of that kind of procrastination. Lesson learned.

  • Take care of your spiritual self. When was the last time you had a steady quiet time with God, a fixed appointment with Him to read the Bible, pray, listen to the Holy Spirit? I've pretty much always struggled to keep faithful in this, but am finding it an essential component of my day now that I've re-started the habit.

Must timer is about to beep and I have to at least get the idea. You will only give excellent care to your special needs child if you are taking sufficient care of yourself, too. It's important. Make it happen!

Friday, October 16, 2009

Autism and Epilepsy Brochure

A couple of days ago the Daniel Jordan Fiddle Foundation (DJF) published a brochure on the connection between epilepsy and autism. The pamphlet is available as a PDF and is available for download and distribution free of charge. Epilepsy is one of many co-conditions that can be found in people with autism. The brochure summarizes current population data on how often the two conditions coincide. It also provides facts about autism and epilepsy, discusses various seizures, what they look like, how bystanders should respond with first aid and medical attention, etc. I think this is a useful resource for anyone who is often around children with special needs where you are more likely to see a seizure first hand. Would you recognize it? How would you respond? The DJF is a national organization that advocates for adolescents and adults with autism by providing grants that provide maximum integration with society.

Tuesday, October 13, 2009

God's Kindness - Fruit of the Spirit Part 5 cont.

God's kindness leads you toward repentance...Romans 2:4b (NIV)

This fifth fruit of the Spirit is a hard balancing act, if you ask me. On the one hand we want to be loving and generous toward everyone around us, and on the other hand we don't want to be foolish or careless in bestowing resources where they will be misused or abused (casting pearls before swine). The verse above, to me, is an amazing picture of this. God's kindness is bestowed on us at a time when we need to repent, but in the process of receiving God's kindness we want to change. Let's look at the context:

You, therefore, have no excuse, you who pass judgement on someone else, for at whatever point you judge the other, you are condemning yourself, because you who pass judgement do the same things. Now we know that God's judgment against those who do such things is based on truth. So when you, a mere man, pass judgment on them and yet do the same things, do you think you will escape God's judgment? Or do you show contempt for the riches of his kindness, tolerance and patience, not realizing that God's kindness leads you toward repentance?" Romans 2:1-4

There seem to be three key thoughts here. First, when we judge others we condemn ourselves. Have you ever noticed that the things that annoy you in other people can often be traced back to something you do yourself? There are several things that I get frustrated with in my daughter only upon reflection to realize that I do the same thing, simply in a more grown up manner. She procrastinates undesirable tasks until they are unavoidable sometimes forcing a confrontation. Anyone else around here doing countdowns at their house? It wears me out. Yet here I sit at a desk filled with papers that probably should have been acted on, filed, or discarded weeks ago. Who, indeed, am I to judge?

Second, God knows who we are. He is the final, honest, all-knowing judge and if we see something we don't like in someone else, we'd best ask Him to examine our own heart as well. Even if that particular sin, vice, attitude, habit, or character flaw isn't present, there is undoubtedly something else lurking there. I have a theory that the longer one walks in paths of faith the more subtle the lurkers are. Things that a new Christian would not even notice can be the biggest issue that an older saint is working on with the Lord. In His eyes, all things that are not holy and from Him are sin and keep us from Him. He is not pleased and He cannot tolerate the presence of such things in the hearts of His beloved and so...

He is kind to us. At another time in my life I might have finished that thought differently, but there it is. He wants us to change, to become ever more like Him, and so He demonstrates kindness. While we were still sinners, He died for us. (Romans 5:8). He guides us into all truth. (John 16:13). He patiently waits for us to come to repentance. (II Peter 3:9)

Since God's spirit can provide this fruit of kindness in me if I rely on Him, the effect I should see on others is that they, too, will be drawn to repentance as I live out the kindness I have received toward others.

Saturday, October 10, 2009

Adventure for Autism

There's nothing like a 25,000 mile bicycle ride to get things rolling. That's Adam Biel's theory anyway. With the statistics on autism now saying that 1 in 91 children age 3-17 has an autism spectrum disorder it's time! Starting in Alaska June 25, 2009, and eventually covering a good bit of the western hemisphere in a year and a half to two years, Biel hopes to raise $40 per mile. He also has extended layovers planned in some cities to work with local agencies to help raise funds. With a background in business (B.S. from University of North Carolina, Chapel Hill; internships with banking and consulting firms) this pet project gone wild will undoubtedly be a success.

Here's how you can help:

Visit and click on the Help AfA post-it-note. Biel welcomes a night in a warm home rather than sleeping in the tent he carries on his bike. A night in a hotel room is appreciated, too. AfA also suggests organizing an autism awareness bike day if Biel rides through your area. You can check out his route at the above link.

Visit L'Arche an organization in Canada (and worldwide) that works to integrate people with disabilities in society and Pathfinders for Autism a parent-initiated organization based out of Maryland. The funds Biel raises will support these two organizations. Check them out. See what else they might need.

If nothing else, help spread the word. Our media market hasn't picked up Biel's story yet. With all the doom and gloom we're hearing these days wouldn't you like to hear some good news? Tell all your friends on facebook or twitter to join the adventure.

Wednesday, October 7, 2009

Book Review - the elephant in the playroom

I am just finishing my read of this heartwarming collection of stories compiled by Denise Brodey. I didn't know quite what to expect when I checked "the elephant in the playroom" out from our local library, but I have been thoroughly hooked in by all of the stories. The book is a compilation of stories written by parents of special needs children with a variety of physical, social, and emotional challenges. Some of the stories are simply cathartic - they let me open the floodgates of emotion (anger, grief, worry, frustration, awe) and set aside all of the logical business-like thinking that I find myself trapped in sometimes as I try to advocate for my daughter. It let me reconnect with my mom-ness and set aside the case manager hat. At the same time it is inspirational. One story ("My Friends Are Waiting for Me" by Rebecca Stern) describes the family's journey to find an excellent school program for their son, Caleb. They eventually placed him in a Reggio Emilia school founded by two women who are proponents of inclusion. It sounds like Caleb, who is diagnosed with autism, is thriving in this program. I can't help but wonder if it would be a good program for other children with similar needs. Some of the stories give hope, others seem like unending tales of despair and yet acceptance. All of them offer something that I can relate to. With the exception of a couple of special needs support groups that I've found, I rarely feel like I "fit in" with other "regular" moms. If they are chatting about their children and I mention that my daughter does something similar to their child it is as if the conversation takes a sudden chill. As if because she is atypical she can't do some things just like other kids. Reading this book made me feel as if I had found a new circle of friends. Granted I may never meet them in this lifetime, but perhaps there will be a special corner in heaven where we can all meet and greet.
I also think this book might help "regular" parents understand the world of their friends or family who are "special" parents. They might find some of it hard to believe, but they also might learn a thing or two about how to support their friends, or at least not to judge them.
I close with a quote from one mother who summed it all up quite nicely:
I read in a book once that having a child with special needs is like
getting on an airplane for a trip. You think you are going to Venice, but then
the stewardess tells you you have landed in Holland. Well, you can spend your
time crying for the gondolas, or you can get out and enjoy the windmills. It's
not quite what you had expected, but it is beautiful all the same.
So I call him my Dutch boy. To remember that windmills are as beautiful as
He fills my world with wonder and unbelievable joy.

Sunday, October 4, 2009

Sunday Digest 8

Today's digest is all about prejudice, hurtful attitudes and words; and how they can be overcome both in ourselves and others. Enjoy!

Two reminders to be careful about how we use our words:
"Why it Hurts" by Renee at 5 Minutes for Special Needs
"When Adults Use The R-word" by Tammy at Praying for Parker

And another about how hard it can be to know whether to disclose in advance, or explain afterward:
"To Tell or Not to Tell, That is the Question" by ShashK at 5 Minutes for Special Needs

An inspiring story about overcoming prejudice and social barriers through education:
"Speech pathologists, other educators bring autism expertise to Bosnia" by Theresa Harrington in the Contra Costa Times

And finding serenity:
The 12 Steps and Autism at Understanding my son

Thursday, October 1, 2009

Childlike Kindness - Fruit of the Spirit Part Five

It might be surprising to read that you can learn a lot about kindness by spending time with a child with social skill delays and behavioral issues. In some ways it is perhaps like looking at the negative of a photograph (back in the day when photographs had negatives). Before having a child with special needs I had never spent a lot of time thinking about how to be kind to people. As a child there were only a couple of instances I can remember (not counting rivalries with my older brother) when I was deliberately unkind to another child; and most of those were self-defense related events. I'm not claiming that I have a lot of skill in this arena - I've always been a bit of a loner, but when I do interact with people I am generally accommodating and thoughtful. Learning to specifically teach social skills to a child, however, has highlighted so many fine points of human interaction that I hadn't really thought about before.

For example, my daughter is engrossed by the idea of birthdays. I may have mentioned that this is one of her favorite pretend play scripts. I've had several "birthdays" this year, and we must always have special pretend food, the birthday song, and lately also birthday crowns. Although she clearly enjoys birthdays, there are some finer social points that we've had to explain in great detail. I've listed some of these below.
  • When it is her turn - When she was younger we wrote a social story about birthdays explaining that she only gets one each year, but that it is still fun to help friends celebrate.
  • Choosing the gift - that it should be something the birthday person will like, and that she will not get a gift every time we give one to someone else.
  • Not being the center of attention - letting the birthday person choose how to celebrate, open gifts, blow out candles, be sung to, etc.
  • Social niceties during the party - saying please/thank you, sharing, taking turns, saying goodbye to the host(ess).
Although these all seem obvious to a normative brain, spelling them out and explaining them to a child that struggles to make sense of it all reinforces the importance to me. Kindness is taking joy in celebrating with others, considering what others need or want, focusing on others, and being polite to a fault.

The other piece of kindness that having a special needs child highlights is how unique we all are, and how each of us deserves some level of individualized care. The best example of this that I can share here is the contrast in interactions between my daughter and two of her friends. My daughter and one of her friends were riding their bikes around on our patio and he was having some trouble navigating some of the turns and obstacles. Because she was following him she would have to stop while he worked his way around the tree branch or the bump in the sidewalk, and when she tried to start again she would "grunt" a little at the effort of moving the pedals on her bike from a dead stop. He interpreted this "grunting" as yelling at him and became quite upset. She, of course, did not undertand why he was upset and continued to grunt and yell until we had to end the play time. The other boy can give as good as he gets in this regard - I have watched my daughter and this boy argue back and forth about whether or not bugs can talk, and if she gets loud he does, too. Unfazed. My point is that the subtlety of needing to treat one friend with more sensitivity than the other goes so far beyond my daughter's skill, and yet it has been a lesson to me. Am I sensitive to what other's need, or do I proceed with a cookie-cutter approach to friendship. One friend needs phone calls, the other hates phone calls but loves facebook. Am I flexible enough to work at meeting those needs rather than expecting them to bend to mine?

Kindness is other-focused, other-driven, and not mass-produced. I close again with a children's song that I learned when my daughter was just a baby. As I watch her garden grow I tend my own a little more closely.

Kind hearts are the gardens.
Kind thoughts are the roots.
Kind words are are the flowers.
Kind deeds are the fruits.
Take care of your garden,
And keep out the weeds.
Fill it up with sunshine,
Kind words, and kind deeds.

Monday, September 28, 2009

Signs of Success

Hindsight is so 20/20. When our oldest daughter was 18-months old and non-verbal, a friend suggested using sign language with her. I started by teaching her the sign for done. After a few days of me using the sign at every opportunity, she did not sign back, but she did say, "done!" This was her first word. Instead of viewing this as a signing success (since she didn't sign back) I figured she was ready to talk and didn't do any more sign language. And she didn't learn any more words for six months. It is easy to slap my forehead in disbelief at my naivete now, but at the time I didn't realize what I was giving up, or what was going on.

We recently started using sign language (ASL) more after learning more about our daughter's various delays. It started by wanting to give her a hand motion to match each house rule that we wanted her to learn. She responded so well to this, and actually told me that the signs are helpful to her, that we've started signing even more. A good friend pointed me to the "Signing Time" videos, which all of our kids like watching, and they are all learning the signs. We've also checked out a few books from the library for additional signing vocabulary. If nothing else it is a fun and educational activity that all of my children enjoy, YAY!...but there seems to be more to it.

Especially since I'm just learning to sign again (dredging up some quite rusty memories from my high school era) I do not sign with my kids all the time, but I am strategically learning signs to accompany challenging and/or important conversations, like:
  • enforcing the house rules
  • talking about emotions (are you feeling happy, sad, grumpy, etc.)
  • frustrating situations (need help?)
  • mealtimes (more, done, please, thank you)
  • play time (your turn, share)
  • and story time (whatever words in a book that I know I try to practice those signs)
It has been a powerful tool to add to my toolbox, and one that I hope will continue to become more useful as I learn more.

Friday, September 25, 2009

Special Needs Adoptions on the Uptick

I'm sure you've all seen the articles, news stories, tweets, and so on about Katherine Heigl and her husband adopting a special needs child from South Korea. Since I don't follow Hollywood too closely (you would laugh if I told you the latest movie I've seen; and TV, ha!) I didn't really dare to add my thoughts to the mix of commentary. I couldn't avoid seeing everyone else's opinions in the feeds of special needs stories that I watch. Everything from opinions about Ms. Heigl's acting, characters, and need for a publicity stunt have been posited as possible factors in her adoption decision. Since I'm not familiar with her, or her work, I have no opinion on her individual choice except that in general our family is very pro-adoption, and I wish the new three-some well as they address the child's medical needs and bond as a family.

When I saw this story, however, I felt the need to comment. Again, in general I am pro-adoption. Our family has seen first-hand the power of attachment between an adoptive parent and their child. We know how God can use this modern arrangement to bring a child, or a parent, or both into His Kingdom. For a while the "thing to do" was to adopt a child from overseas. It is somewhat faster, less expensive, and can move children from an impoverished situation to one of relative wealth and ease. According to this story, the demand has out-paced the supply and international adoptions are now taking longer and costing more, too. What should the desperate-to-adopt parent do? Where should they turn? It seems the next big boom in the industry is special needs children. The recent celebrities who have followed this route have perhaps added some "glamorous" patina to the idea of adopting a special needs child, but it appears the uptick was happening before they got on board. Is adoption becoming such a consumer-driven process?

Some are concerned that the adoptive parents "don't know what they're getting into." I share their concern at some level -- except I also know there are plenty of biological parents who are not prepared for the challenges of special needs parenting (self most definitely included) and there is no "Now you can be a Special Needs Parent" exam. It's not like we're certified or concerns are at a different level, though currently they are only questions.

  • Why is it a recent phenomenon? There have always been special needs children available for adoption. Why are they being adopted more now and not before? Is the motivation solely because the process can be so much more rapid? What does this say about the quality of compassion that is directing these decisions? What does it say about society's view of people with special needs?
  • Which special needs are "adoptable" and which are still being set aside? I've heard there are "checklists" for which special needs a prospective parent is willing to take on. Is there a hierarchy of disabilities? If a generally misunderstood condition such as autism or some complex medical issue is present do the boxes get checked?
  • Do these parents receive the support they really need? Adoption is a complicated process. Add special needs for the child and you have a doozy of a need for a support system.

Bravo to the brave hearts who are walking through this process. May God bless you as you join the ranks of special needs parents. May we as a society learn from your compassion that every child deserves the safety and security of a loving family.

Tuesday, September 22, 2009

In the Hands of a Patient God - Fruit of the Spirit Part 4 cont.

Although I am learning to be more patient, I have so far to go. When there is too much work to do and three little people are all calling for my attention at the same time it can be unbelievably hard to remember to count to ten, take deep breaths and move calmly through the situation. While I wish to give myself the grace to learn, I also wish to be a quick study, so even in my quest for patience I am impatient! I must turn to my ultimate role model and the One who will supply the patience if I will remember to turn to Him.

In what ways does God demonstrate His patience to us? Two verses come to mind.

First, one of my favorite verses: "The Lord is gracious, and full of compassion; slow to anger, and of great mercy." Psalm 103:8 Although the word "patience" is not directly used here, the combination of grace, compassion, a slow anger fuse, and mercy adds up to patience. The perspectives that can keep me from losing my patience as a worn out mother include:
  • realizing that my children need a break even if they don't deserve it (grace)
  • seeing my children through eyes of love (compassion)
  • dousing that anger fuse (mine is way too short)
  • and with-holding consequences that don't fall into line with the first three bullets (mercy)
I wear a bracelet that quotes this verse because each morning that I put it on I remember this amazing combination of characteristics of God, and it makes me want to be more like Him. It is an act of binding His word on my hand that seems to carry me through the day with more assurance of His presence. Interestingly, there are several similar verses in the Old Testament. (See Exodus 34:6, Numbers 14:18, Nehemiah 9:17, Psalm 86:15, and Jonah 4:2.) So even in explaining His patience toward us, God is patient.

The other verse that came to mind is II Peter 3:9 (NIV), "The Lord is not slow in keeping His promise, as some understand slowness. He is patient with you, not wanting anyone to perish, but everyone to come to repentance." The verse is written in the context of refuting scoffers who in that day (approximately 65-68 A.D.) were saying that Christ's second coming was a myth; that He would not return to take His own and establish His reign. So just about 30 years after Jesus' death and resurrection the skeptics were already planting seeds of doubt. Now, 2000 years later how much more do we rely on His faithfulness? As Peter reminds us we must also rejoice in His patience. To continue to uphold the heavens and earth in His hand as He waits patiently for all who will come to come. What a picture of patience! Notice, however, that Peter makes this personal, "He is patient with you." What is He waiting for? Perhaps He is patiently waiting for me to be to be more patient.

"Amen. Come, Lord Jesus." Revelation 22:20 (NIV)

Saturday, September 19, 2009

What Will They Be When They Grow Up?

Today's action post will be a bit different...instead of telling you about a charity that works with special needs children I want to tell you about a business that hires special needs adults. I guess every parent hangs onto the apron strings at some level. Though technically your job as parent ends when your child turns 18 years of age, or at the outside 21, everyone knows that once you're a mom or dad you are always a mom or dad. I'm just guessing (since we are nowhere near this transition yet) but I bet the apron strings are more firmly tied for parents of special needs teenagers and young adults.

Consider the current economic environment. With double digit unemployment nationwide, and much higher in some states and cities, how much harder is it for young adults with special needs to find jobs they can be independent and successful in? Even normative adults are challenged to find work these days. Meanwhile, the special needs population is going to continue to grow as the number of autism diagnoses alone continues to climb. Kind of a special needs worker boom looming on the horizon. Should we just send them all home to watch TV and twiddle their thumbs or should we start now to develop job training programs and employer accommodation programs that will make it possible for special needs workers to be successful and productive. Maybe we could get ahead of the curve on this one?

I read this article at The Autism News today about "Men with Mops." You can read another article that gives more information here. Men with Mops is evidently a private business affiliated with Rutgers University's Douglass Developmental Disabilities Center. The idea of building a business that is centered around adults with developmental disabilities may be daunting to some, but consider what steps you could take in this arena:

* Encourage business owners to learn about special needs accommodations.
* If you are a business owner, look for ways to include a special needs worker in your model.
* As a parent begin early to consider what job skills your child needs to develop in order to find a suitable workplace in the future.
* Consider finding a Men with Mops equivalent in your area and offer to be a job coach, or help them recruit work opportunities.
* Advocate for job training programs and employer training programs in your area.


Related Posts with Thumbnails