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!

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.

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.

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.

• Down Syndrome occurs in 1 of every 800 live births.
• Childhood Leukemia occurs in 4-5 of every 100,000 children (ages 0-14)

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.

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.

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.

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 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 necessity...it 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.

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?