Thursday, July 30, 2009

Learning Joy - Fruit of the Spirit Part 2

The Encarta Dictionary defines joy as "feelings of great happiness or pleasure, especially of an elevated or spiritual kind." The Greek word for joy in Galatians where Paul lists the fruit of the Spirt is chara (khar-ah'), which means cheerfulness, calm delight, great or exceeding gladness. Chara also comes from the word chairo (khah'ee-ro that means to be cheerful or calmly happy. Chairo can be used as a greeting or parting wish: be well, farewell, be glad, rejoice! I wonder if this is where the expression cheery-o originated. Happy, by the way, is defined as, "feeling or showing pleasure, contentment, or joy."

I give these definitions because I have heard in the past that happiness and joy are two different emotions. Happiness is generally thought of as positive feelings arising from some circumstance - like finding a twenty dollar bill on the sidewalk. Joy is often considered to be above and beyond circumstance - like realizing that the person twenty feet away on the sidewalk is the person who dropped the bill, but being glad that you were able to return it to them, even if you really could have used an extra twenty bucks. Still our words fail us as the definitions of happiness and joy seem inextricably linked.

If it is hard to define joy, yet you want to learn what joy is you need to hang out with a child for a while. Special needs children don't have a corner on the joy market, but they can demonstrate true joy that rises above their circumstances. We embarked on a camping trip last weekend with a few families with special needs children. One girl in particular was a great example of joy to me. She has cerebral palsy (CP) and depends on a wheelchair, adaptive communication technology, and help from her friends and parents to do just about everything in her day. Because her communication computer doesn't travel well (probably especially in the heat, dust, and smoke of a campsite) we relied on her parents for the most part to communicate with her and understand what she wanted. However, there were two very clear instances when she didn't need help to express her thoughts. One was the suggestion to make s'mores for dessert the first night. Her entire body leapt with excitement and anticipation and Joy at the thought of making and eating a s'more. Her face lit up and her grin spoke volumes. The other was when her dad promised to take her swimming again after lunch. She is able to move her legs through the water and I imagine the freedom from her chair alone must be exhilirating. Again we didn't need any help to interpret the pleasure she would get from swimming with her dad.

When I lose sight of how amazing and beautiful all of life is around me and I begin to complain about some small and temporary inconvenience, I hope the image of this young lady as she anticipated such simple pleasures will come to my mind. We need to remember to find joy. It is there to be found.

Monday, July 27, 2009

Keeping it Positive

What were the rules in your house when you were growing up?

  • No hitting!

  • No yelling!

  • Stop playing with your food!

  • Don't you do that...

Even the ever popular, "That is NOT okay!" (which I have previously thought of as a fairly benign way to correct a child) -- are all examples of negative statements that are often ineffective in improving the child's behavior. In fact, we are learning with our daughter that saying no, stop, or don't seems to actually ramp up negative behavior. It hits the wrong button, as if we're holding the remote control upside down and inadvertently ratcheting the volume up when we want to be turning it down.

In thinking about this over the last several months, I think there are three contributing factors. First, the words no, don't, not, stop, etc. all get used so often with young children that they seem to lose their power. So when a parent says, "Don't hit your brother." it is as if the child's brain mutes the "don't" and the command becomes, " * hit your brother." I say this somewhat facetiously, and yet I think there is an element of truth. Second, particularly if the child is already upset or angry or frustrated and an adult is telling them what they should not do, when what they need to hear is what they should do (see below), it adds another level of upset, anger, and frustration. Third, and perhaps most importantly, when an adult says any negative construct of correction, they will inevitably say it in a harsh, loud, unregulated voice that adds to the child's lack of regulation.

I am no expert at this. After months of practice I still find myself saying no, don't, and stop, but I'm learning to follow quickly with what is called the positive opposite. This is simply phrasing your correction as a directive toward what you want the child to be doing. Recently our twins have a fun way of letting us know they want more food, they slap the table with their hands. This is probably normal for their age, but our special needs daughter was mimicking the banging and between the three the whole table would shake until the drinks threatened to spill over. Rather than yelling, "Stop banging the table!" we decided to say, "Quiet hands, please" and add some physical support of gently holding the babies hands. Our oldest daughter now loves being the example of how to have quiet hands, so when the babies begin to bang away she now says, "Quiet hands, babies" and shows them how to silently pat. It has been a much nicer way to resolve the problem.

Some other positive opposites we are trying to remember to use (note these are written from the child's perspective):

  • We always use gentle hands.

  • We always keep our feet down.

  • Inside the house and car we are calm and quiet.

  • When I need help I walk to Mommy or Daddy.

  • We always stay close in parking lots, sidewalks and crosswalks.

  • Each person can finish their turn. I can ask to be next.

My goal is to have these positive statements be the first things that come out of my mouth. Perhaps a portion of the reason the negative constructs are spoken first is from sheer force of habit, but the larger share is my heart attitude that needs to be addressed. "...For out of the overflow of the heart the mouth speaks." (Matthew 12:34, NIV) Positive opposites are best used when coupled with profuse praise when the child does the right thing. Having a heart that is looking for opportunities to praise is a big piece of being willing to put in the extra effort to phrase correction positively.

Credit where it is due: I learned about this and other techniques I am currently using with my daughter from two wonderful people, Clarissa Montanaro and Robin Hauge. Please contact them at clarissamontanaro-AT-gmail-DOT-com for more information on this technique.

Friday, July 24, 2009

Army Strong

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

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

Tuesday, July 21, 2009

The Love of God - Fruit of the Spirit Part 1 cont.

Love is the first fruit promised to us when the Holy Spirit is in control of our lives. Love is a large topic, so I want to just focus on God's love, because that should be the love the Holy Spirit empowers us to give. I am reminded of one of my favorite hymns:

Could we with ink the oceans fill,
And were the sky of parchment made,
Were every stalk on earth a quill,
And every man a scribe by trade,
To write the love of God above,
Would drain the oceans dry,
Nor could the scroll contain the whole,
Though stretched from sky to sky.

And yet I attempt to summarize this key quality of God in a blog post. Right. Please remember that in I John 4:8 (NIV)the apostle John teaches us that "God is love." Meaning God defines love and love is an integral part of God. Everything He does is out of love. To try to pat that all into three paragraphs and a poem would be impossible. I will narrow my focus to three key aspects of God's love.

First, God's love is unconditional. If you have a relationship with God it is fun to consider how He pursued you to establish that relationship. The journey for each person is different. For myself, I was raised by parents who are both strong in the Christian faith, but I still had to be put in a place where I would deliberately choose that faith to be my own. The key thing is that for all of us He pursued us in order to love us even when we were running the other way. Romans 5:7-8 (NIV) says, "Very rarely will anyone die for a righteous man, though for a good man someone might possibly dare to die. But God demonstrates His own love for us in this: While we were still sinners, Christ died for us." He started chasing us from the cross, even as we were pounding in the nails. Wow.

Second, God's love is resilient. When God's love is bestowed, there is nothing that can remove it. Romans 8:37 (NIV) says, "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." We tend to think of death as being so final and powerful, unavoidable, and yet we are promised that even death has not the power to separate us from God's love. Wow.

Third, God's love is understanding. In one of many verses with a similar theme, Joel 2:13 (NIV) says "Return to the LORD your God, for He is gracious and compassionate, slow to anger and abounding in love..." Written to God's chosen people in the Old Testament who have repeatedly turned their backs on God only to beg for deliverance when things get tough, this verse takes on new meaning. God says, "Yes, I know you have stopped obeying me, but I also know that you are frail, weak, and needy. I won't display anger here, instead I'll display grace, compassion, and love." Wow.

The only way I can love unconditionally, through any challenge, and with abundant understanding, it to totally rely on God to be the source of love in me. I must ask for this moment by moment, and trust that He will provide.

Saturday, July 18, 2009

Health Care Reform

If you pay any attention to politics and current news items you have heard all of the debate that is going on about health care reform in the U.S. I do not pretend to be an expert in this, nor do I claim to know enough to tell you what you should do or think about it. I am listening and reading a lot. In general I am politically conservative, and there are very few politicians that I trust to be looking out for my best interests, even though that is what we elect them to do. I guess you could call me a conservative cynic. Although I know there are a lot of things that aren't working well in the way we manage the financial side of health care in our country, I have big doubts that the government increasing its involvement at any level will be beneficial. Given the current mode of government, however, I think that is what we're headed for. Just think about the government agencies you already have to deal with on a regular basis and how hard it is to get what you need from them when you need it. Still, we know about big hospital bills (our family frequented a local hospital for about 9 weeks around the birth of our twins, 5 weeks for me, one week off and then 3 weeks for the two babies); crazy insurance rules, applications, the pros and cons of COBRA, and pre-existing conditions...and this is where today's action post comes in.

Children with special needs will undoubtedly be affected by whatever decisions our elected officials make about health care reform. As a parent are you concerned? Do you know what is happening? There are steps you can take to get involved and make your voice heard. No matter what your political stance, I encourage you to take these actions at minimum:

1. Read, listen, or watch as much as you can in order to learn as much as you can about the health care reforms that are being considered by our elected officials. I've linked to two differing views below. Consider these a starting point for your investigations.
  • "The sick, special needs patients, and seniors – those most at risk when the government involves itself in these tough decisions – deserve better. Like it or not, once government-run health care is a fait accompli, government rationing becomes the logical endpoint."
  • "The status quo that is 50 million Americans not having health insurance, a system that has administrative waste and as a result drives up premiums so that it is unaffordable for many patients – that is just not acceptable."
2. Make some informed decisions about where you stand on the issues.
3. Contact your elected representatives and let them know your opinion.

There are also several specific actions that you can take if you find that the messages of these petitions and e-mails aligns with your own views. I'm sure there are others, these are just some I've come across in my own search for information.

  • Send a "fax" to Speaker of the House, Nancy Pelosi, asking her to watch the AutismVotes advertisement and to support health care reform that ends insurance discrimination against autism. ***Update: 7/29/09 - AutismVotes asked everyone to stop contacting Speaker Pelosi because her office entered "productive discussions" on this issue. I'll keep you posted if I hear any more on this. ***Update: 11/27/09 - The House version of the Health Care Reform legislation did include provisions to end insurance discrimination against autism. You can read more here. This shows that with enough voices concentrated on one objective we really can be heard!
  • Sign a petition to ask Michelle Obama to sit down with two parents of autistic children and two self-advocating autistic adults to discuss the formation of an Autism Corps.
  • Watch this video about the effects of the current health care reform proposal on the abortion issue. CitizenLink can help you contact your representative.

Wednesday, July 15, 2009

Book Review - Let Me Hear Your Voice

Let Me Hear Your Voice is the first "non-clinical" book about autism that I read after our daughter's first diagnosis. Another special needs mother gave it to me and I must say that it was an amazing step for me to read this story. The author, writing under a pseudonym, shares their family's story of watching their second child, their only daughter, withdraw into the depths of autism from a seemingly "normal" babyhood. After coming to terms with their daughter's diagnosis they set out on a quest to find a "cure" as so many families have. They see specialists, they investigate various therapies, including "holding therapy", and learn about intensive behavioral therapy from Dr. Ivar Lovaas (applied behavioral analysis). They embark on a rigorous behavioral intervention program in their home (with privately hired therapists) while still seeking answers to their questions. Given the time frame of Anne-Marie's diagnosis (late 1980's) I was amazed to learn how many people still believed there was some causal effect of poor maternal bonding in autism. That is until I had a few more discussions with people and found out that some people, sadly, still draw a connection there. This book was absolutely cathartic for me at the time I was reading it. I connected so immediately with the author as the birth of her third child was complicated by bed rest at the same time that her daughter was beginning to struggle to stay connected with the world around her. She had a new baby to care for at the same time that she was learning about her daughter's great need. She also watched her youngest son's development seeking warning signs of what was already happening with her daughter. Sadly, he too developed the patterns of autism, but now the parents knew the steps to take to help him. Amazingly, and perhaps because they were able to have intense intervention so early (shortly after 18 months for both of them) they both recovered to the extent that within a couple of years professional teachers who did not know the children's history did not distinguish them from "normative" children in any way. The story left me wanting to know more about how Anne-Marie and Michel are doing now - they would be about 20 years old, probably studying in college somewhere. One thing that was discouraging to me was the financial resources that would currently be required to implement a similar private program. Every parent wants to do as much as they can to help their child, money should not be an issue, and yet it is for so many. Let Me Hear Your Voice certainly gave me hope at a time when I desperately needed it. I would encourage any special needs parent to read it for the sheer inspiration to keep on doing our very best for our children.

Other book reviews:
A Regular Guy
Handle With Care

Sunday, July 12, 2009

Sunday Digest 4

1. Experience the story of a family forever affected in part by a nurse's negligence. For the full context read the associated article. It is rather lengthy, but certainly eye-opening. I have met this family and their resilient spirit is amazing.

2. Watch this advertisement sponsored by Autism Votes/Autism Speaks, and send a message to Speaker Nancy Pelosi to get autism insurance reform as part of the National Health Reform package. If you agree with the message of the ad you can send an e-mail to with the following suggested text:

Dear Speaker Pelosi/Leader Reid,

Our family believes that health care reform that does not end autism insurance discrimination is unacceptable. Please go to to view an important TV ad, which is currently running on CNN, CNBC and MSNBC. We hope that moving forward, you will be sure to stop the discrimination that our child, and millions like him/her around the country, faces on a daily basis. Our children deserve appropriate access to the medical treatments and therapies they need for their medical conditions.

With kindest regards,

Your name
Your City and State

update 7/18 - when I tried the AmericanVoices e-mail, my message bounced back to me. The mailer-daemon did not tell me why it failed - perhaps the mailbox was full when I sent my message. Try a Google search on "Pelosi contact" and you'll see a link for the Speaker's website where you can send an e-mail directly. This will work if AmericanVoices does not.

3. 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.

4. For friends who are caring for both aging parents and special needs children. You are not alone. This, in general, looks like an encouraging blog. I know I'll be checking it out...

5. Please join me in praying for these special needs children in Florida who have lost their parents (again) this time in a brutal murder.

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

Thursday, July 9, 2009

Learning Love - Fruit of the Spirit Part 1

I thought we should examine each aspect of the Fruit of the Spirit as listed in Galatians 5:22-23 from two different sources. First, what do our children teach us about love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control? Second, what does God's word teach about these qualities?

Most parents will attest that they never knew exactly how strong love could be until they became a parent. I remember during the first few weeks after our daughter was born holding her as she was sleeping and weeping at the enormity of wanting so much to take care of her and yet not really knowing how to go about it. Somehow I think parental love takes on an almost fierce quality when the child it is bestowed on has special needs. Although we may not always understand our children ourselves, we will not tolerate anyone or anything that even hints of disregard, harm, or mistreatment. It is why I squirm every time I see someone use "special needs" to equate to silly or ignorant behavior. It is why there was mild outrage over President Obama's "slip of the tongue" with respect to the Special Olympics. That fierce love will also fight through any financial, bureaucratic, logistical, or prejudicial barrier to find or provide the right treatment, program, equipment, or professional to work with our children. They say one should never get between a mama bear and her cub...they ain't seen nothin' yet.

I think we also learn about love directly from our children. Even if they don't express love in "normative" ways, they do know love. I remember reading the book "The Five Love Languages..." while dating my husband and learning that his way of expressing love is by giving gifts. Our daughter does the same thing. She of her own initiative gives things to people she has made a connection to: a picture she drew, some flowers from our yard, a bead from her collection, etc. What she's saying as she hands out these trinkets is "I love you, I enjoy being with you, I want to spend more time with you". This child, who has required social skills training to learn how to share toys, has from a young age known how to express love. I should be so generous in my own expressions of love both to her and to others God has called me to love.

Monday, July 6, 2009

Remain Calm

This is definitely something that I have not mastered yet, as evidenced by the following anecdote. Our daughter loves swinging. She will swing on things that one never knew one could swing on, and some that one cannot. One afternoon while I was busy preparing dinner she decided to try to swing on a blossom that was hanging down from a spider plant that sits on top of the seven foot high bookshelf in her room. She jumped up high enough to grab it, but her weight pulled the plant and its heavy ceramic pot down onto her head and then onto our relatively new beige carpeting where it broke and scattered potting soil over a five foot radius. Somehow I didn't hear any of this, and she didn't tell us right away what had happened. We normally keep her room closed to keep her younger siblings away from small toys, so I did not notice anything amiss until later when she told Daddy that, "Mommy has a big mess to clean up in my room." As he asked for more information more of the story as I have pieced it together came to light. He relayed information to me, and I began imagining which plant she could be talking about (there are several in her room) and started walking rather briskly toward her room. She rushed to my side and said, "Mommy, I need you to stay happy." Sadly, my child knows how messes like this are a thorn in my side. I am barely able to keep up with the cleaning demands of our household as it is, and if a mess is avoidable I want it avoided, it's that simple. She has seen a few too many times how I do not follow God's example of being slow to anger. Her simple request was like a laser to me. She already knew she had made a mistake. She didn't need me exploding to make it any clearer. In fact if I blew up over what I was about to see on the other side of that door, she would only see reinforcement of negative behavior. I took a deep breath and willed myself to remain calm as I opened the door. When I took in the scene it actually helped to remember that the plant needed a bigger pot anyway. I felt even better when I realized the potting soil was dry and would not set into the carpet. I had my child help in the clean up by picking up toys that were scattered in the mess so I would be able to vacuum more easily. I reminded myself how good it was that she had not suffered any major injury as she easily could have in such an incident. After a short amount of time we cleaned up the mess and talked about asking permission before trying new things. I moved on with our evening feeling much better than I would have if I had allowed myself to explode, but it took my daughter's simple request to "stay happy" to help me choose that outcome.

Here are some ways that I have found to "stay happy" in the face of upsetting events or behaviors:
1) Slow down. Take time to take a breath. Try to purposefully talk and move a little slower.
2) Detach. Literally put off the "mom" hat and try on the "teacher" or "psychologist" hat. Make mental notes about what is happening from as objective a viewpoint as you can muster. This actually helps to avoid or handle similar situations next time around, too.
3) Say a quick prayer. "Help!" seems to reach Heaven's doors just as effectively, and more quickly than long-winded soliloquies.
4) Take stock. Are you hungry, thirsty, tired, or do you need a bathroom break? Any of these can make me extra edgy. Take care of your needs so you are more available for your child.
5) If all else fails, step away. Look around for safety issues, keep children within earshot, but get out of view. Breathe, pray, think of ways to involve your child in the solution to the problem if needed. Decide what boundaries you're trying to enforce and whether it is worth the turmoil.

I would love to hear your ideas on how to "stay happy". Please leave a comment below.

Credit where it is due: I learned about this and other techniques I am currently using with my daughter from two wonderful people, Clarissa Montanaro and Robin Hauge. Please contact them at clarissamontanaro-AT-gmail-DOT-com for more information on this technique.

Saturday, July 4, 2009

Commencement at P.S. 176X

We are just beginning our daughter's school journey. She will enter Kindergarten this fall, and thankfully since she has been in an early intervention program we already know a lot about how the school system works. When I found this story it was so encouraging to see a public school so fully devoted to serving students with special needs. These students have accomplished so much, and their families should be so proud. While celebrating their achievement, they are also facing a great unknown. Some of them will enter the working world and face a whole new set of challenges. I hope you will also be encouraged and inspired by this story, and that you will join me in praying for these students as they embark on a new stage of their journey. May God guide their steps. Be sure to check out the video.


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