Thursday, April 30, 2009

Content (quietly satisfied and happy)

This is not a word that we use very much in our society. It seems that we are always wanting just a little bit more: the latest gadget, a higher salary, a bigger house, a newer car...and this I think is the root of the problem we've been discussing here for several posts. Our children are stressed out. Perhaps they have caught the discontent themselves and now want a higher grade, another activity, more trophies, more recognition. Perhaps they sense our discontent and think it applies to them. Maybe they think we want "a better kid" in addition to all of our other wish list items. May it never be!

In Philipians 4:11-13 Paul says, "I have learned to be content whatever the circumstances. I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Him who gives me strength." (NIV)

In my last post I scratched the surface of some of the challenges of parenting a special needs child. Considering only this area of supporting our children in their achievements there is a long list of issues to balance, and yet this is what God calls us to. Paul gives us the answer in these verses -- and not just for this area of our lives. Our strength to be the parents that God expects us to be -- the source of training and being cherished for our children -- comes from Him. It's a high calling, but He will provide the power we need to live out that calling. It requires an abiding relationship with Him.

Part one Achievement
Part two Achievement
Part three Achievement

Monday, April 27, 2009

Bring Them Up!

In my latest post I focused on what parents should not do when considering their child's achievements: exasperate - make a bad feeling worse. The film Slipping Behind draws attention to the fact that many of our youth are overwhelmed by trying to reach some elusive standard of success (constant work and being good at everything). Parents tend to push their children to do more and to achieve more because we do want them to succeed, but if we're contributing to their sense of failure then we are failing them.

God instructs us not to exasperate our children in Ephesians 6:4. Instead we are to "bring them up in the nurture and admonition of the Lord." I went back to the original Greek again to better understand this phrase.

  • Bring is ektrepho - to rear up to maturity, to cherish or train, to nourish. The roots of this word are ek - origin and trepho - fatten, cherish, pamper. I interpret this to mean that parents should be the origin or source of their children's training, nourishment and cherishing; nurturing.

  • Nurture is paideia - training and by implication disciplinary correction.

  • Admonition is nouthesia - calling attention to by mild rebuke or warning.

To put it all back into a sentence: Be the source of your child's nurturing as you train them to do things correctly and warn them about the wrong ways to do things according to Christ's teachings. I think a very key point is that the correcting and warning are to be done with the goal of nurturing, not punishing. Nurturing is tender and has an ultimate goal that its object should flourish. Many (self included) err on the side of correcting and warning to a punitive end. This is legalism exacted on our children. For others in our culture it is easy to fall into the other extreme and to pamper with no goal of teaching right and wrong. Moral relativism on the candy aisle. There is a fine balance to all of this that is challenging to maintain, and yet I am coming to believe that it is critical for our children that we find that balance.

I think it is particularly difficult to keep that balance when raising a special needs child. It can be so frustrating to tell your child for the umpteenth time to follow a particular rule or meet a particular standard. Every parent faces that challenge. But when that challenge is multiplied by the self-doubt of whether or not you should hold your child to that standard because it is hard for them to meet or because you know it will result in an all out fit (what I like to call a class 9 hurricane), becomes easy to let certain standards slide a bit. It is easy to pamper, over-help, and coddle. It is also easy to push too hard hoping that with enough intervention, therapy, treatment, whatever that your child will "overcome" their challenges and go on to do great things. It's sometimes hard to realize that they are already doing great things by simply making it through a busy day without a major meltdown or by scoring average on an assessment in an area of challenge. It is also hard to maintain the level of nurture that a special needs child requires. This is why social services offer respite care to special needs parents. From special physical demands to emotional supports, the logistics of arranging various therapies among the other family needs, and the spiritual issues that all special needs parents face; no one can do all of this full-time without support. Yet this verse is what we are called to do as parents. I believe God gives us the resources we need to meet what He is calling us to do. My last post on this topic will address our hope in Him!

Part one Achievement
Part two Achievement
Part four Achievement

Friday, April 24, 2009


Continued thoughts on our culture's over-achieving pressure on today's youth and the implications for those with special needs.

Consider the average high school student's daily grind: 7 hours of school, 2 hours of sport/extracurricular activity, 3 hours of homework. Let's assume this student is more disciplined than their peers and gets the 9 hours of sleep recommended by the American Association of Pediatricians. That leaves 3 hours of down time - including meals, grooming, socializing, and family time. I keep asking myself how long I would be able to keep up that pace. As a busy mom with lots of extra volunteer work and writing I need (and get) more than 3 hours of "me" time per day.

I promised a Biblical response to the problems facing our youth, and the verses that repeatedly came to mind are Ephesians 6:1-4 (see quote at left). The key phrase is "Fathers [Parents] do not exasperate your children..." (NIV) In the King James it says "...provoke not your children to wrath..." In the original Greek the word parorgizo contains the whole English phrase "to arouse to wrath or anger." Exasperate (Encarta World English Dictionary, 1999) means to make somebody very angry or frustrated, often by repeatedly doing something annoying or to make an unpleasant condition or feeling worse. The students represented in "Slipping Behind" definitely seemed exasperated in the latter sense. They were too spent to be angry per se, but what should be a happy time of youth had been stolen from them. Well-meaning parents who want the best for their children and know that education and extra-curricular talents are keys to "success" push for more and a little more until inevitably the young person cannot meet the demands and breaks under the pressure.

The student panel that discussed "Slipping Behind" after the advance screening suggested that parents who want to help their children cope with their stress should not emphasize grades too much, but should instead focus on learning. Ask about a student's "day" rather than about "school" since they are worth far more than the sum of their courses. I have already wondered about this in our situation: is 5 hours a day, 5 days a week too much preschool, even if more than half of the time is semi-structured play? This is the recommended program to include all of the various intervention strategies our daughter needs, but does it leave enough time to just be a kid? It's easy to see how an older child with special learning needs might turn into a kid who is all about school in one form or another. We must remember that there should be more to their day than school.

In Ephesians, Paul goes on to tell us to bring up our children in "the training and instruction of the Lord." We'll explore what that means in the next post.

Part one Achievement
Part three Achievement
Part four Achievement

Tuesday, April 21, 2009

Even Further Behind

I attended an advance screening of a film this evening hosted by our local library and learning center, and the film's producer (Reel Link Films). The film's maker, Vicki Abeles, lives in our area and has travelled across the country to gather interviews for the film. The film is called "Slipping Behind" and it is about the pressures on youth, particularly high school students, but also as young as 3rd grade, to excel at school, in sports, in the arts, and in other extracurricular activities. Among the shocking content I heard tonight:
  • Applause for a 15 hour/week limit on high school sports commitment (n.b. this is still more than 2 hours/day on top of school work)
  • Success is currently thought of as constant work, and being good at everything.
  • In the 1940s high school students did 3-4 hours/week of homework; now it is more like 3-4 hours/day.
  • 80% of students admit to cheating in some form because they don't feel they can do all of the work on their own. This is often viewed as "borrowing" someone's work.
  • Adolescents need 9-11 hours of sleep each night. Many high school students are getting only 4-5 hours of sleep each night.
  • What might be an escape from the stress of school - sports, music, theater, etc. often turns into a new form of stress as the competition levels increase or when the student feels they cannot do something they love because they don't have time for it.
What drove me to attend this meeting is the nagging feeling that it spells disaster for children with special needs and those at risk if even the brightest and best are overwhelmed by the current atmosphere of pressure-cooker achievement. In the end the film questions whether we're even teaching youth the right skills when in the work force they will succeed most by being flexible, optimistic, enjoying their work, and being able to work on a team. We are failing ourselves and our children by putting pressure on GPAs and test scores because the best conceptual learning does not occur under pressure. It happens with real world applications and time for exploration. If students who learn things readily and need only a modicum of discipline to focus on required tasks are struggling to succeed, how will the child who struggles to read or write or whose attention drifts easily be able to even subsist?

I'll plan to write a response to these questions from a Biblical perspective in my next post. It would be easy to get wrapped up in fear with these ideas floating in my mind, but I will trust instead that God has the answer.

Part two Achievement
Part three Achievement
Part four Achievement

Saturday, April 18, 2009

Five Ways to Prepare your Spirit for an IEP

It is IEP (Individual Education Plan) season in our area. Especially for parents of children who will undergo a transition from one phase of education to another (e.g. preschool to elementary school) or from one agency to another (e.g. Regional Center to School District Early Intervention Program) this time of year is busy and stressful. I've seen a lot of resources that explain how to prepare practically for an IEP. Knowing your rights and consulting with experts outside the agency you're dealing with are important steps. As a person of faith I've found that it is just as important to prepare for these meetings in the spiritual realm. Even the most straightforward meeting can be challenging, and IEPs are rarely straightforward. Here are some ideas that I've used.

1. Get prayer support. I developed a list of ten family members and friends that know us and know God. I often e-mail them when a particularly stressful IEP is on our calendar. I send them a brief explanation for why this meeting is so critical, and I ask for specific prayer for any services we're seeking or decisions we're making. I also ask for prayer that we will be good witnesses of God's grace and love. I try to also let them know how the meeting went so they will hear how God answered their prayers and how they can continue to pray.

2. Keep short accounts. Search your heart for any anger or bitterness that has been allowed to take root. Consider each participant in the meeting: teachers, other professionals or experts, advocates, your spouse, your child, and even yourself. It is easy to start playing the blame game when you feel like someone is not giving your child what they need, but being angry imprisons you. It's hard to be a good advocate for your child when you are bound up in your own emotions. Forgiveness is a choice. Sometimes it is a choice that must be made repeatedly in order to be able to work through difficult situations as a team.

3. Enlist practical help from the Body of Christ. This has been essential for us since our extended biological family does not live nearby. Our church is quite literally our family. When we have a potentially difficult IEP on the calendar I ask friends from church to help with babysitting, playdates, etc. It also benefits the church because it lets people use their gifts and be involved in ministry.

4. Seek godly counsel. We are blessed to have other Christian friends who have walked through numerous IEPs before us. Often if I am writing a letter to explain our position or just need to bounce some ideas off someone, these friends have both the practical knowledge and the spiritual wisdom to give good advice. However, I also find that it is beneficial to talk with godly people who don't necessarily know anything about the IEP process. The questions they ask and the fresh perspective they offer can be the dose of insight I need to break through whatever obstacle has arisen.

5. Put on your armor, but remember who the enemy is. Consider meditating on the armor of God (Ephesians 6:10-18) before your meeting. I have recently found this to be very useful to prepare for any potentially difficult encounter. It is important, though, to remember that "... our struggle is not against flesh and blood" (i.e. not against teachers, administrators, experts, bureaucrats, etc.) "but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms." (verse 12) Satan would like nothing better than to discredit your faith, discouraged you, or defeat you with temptation. IEP meetings are a ripe spiritual battleground, but you need not be unprotected.

There are probably more steps one could take to walk into an IEP with their spirit aptly prepared. I'd love to hear your ideas via comments. These are the most critical ones I've encountered in the last year. I'll be praying that they are useful to you.

Click here for a practical idea for preparing for a new school year, new teacher.

Thursday, April 16, 2009

In the Beginning

This will be my last post on the topic of inclusion for a while. As promised, this may be the most controversial of all my thoughts on the issue, and yet it is also the driving force for choosing this topic in the first place. Some time ago I selected a book from our home library just looking for something I could read that would help me drift off to sleep after a stressful day. I started reading it, set it aside for more urgent reading, buried it on my nightstand, and around the time I started blogging again unearthed it again. Just in time.

The book is called, "The Least of These" and is written by Curt Young (1984). The subtitle of the book is "What Everyone Should Know About Abortion". (I know...not exactly bedtime reading.) Young writes from a strong pro-life perspective. One chapter in particular was particularly disturbing to me in that it discusses what Young calls a legacy of abortion. I will simply quote Young here:

Within months after the Supreme Court's decision [Roe v. Wade], pediatricians began arguing for public acceptance of infanticide for newborns with birth defects or handicaps. Appearing in leading medical journals, their articles carried the imprimatur of the medical establishment. The published pieces were not theoretical in nature. They revealed the willingness of physicians to bring on the deaths of handicapped newborns...(p. 110, emphasis mine)
It sounds unthinkable, and yet Young cites several cases in practice. One doctor in particular approached parents and told them their child would never be more than a "vegetable" and that they should withhold care. One such child had Cerebral Palsy but was eventually able to walk under his own power and earned straight A's on his first report card.

It raises an interesting point for me. For about a year now I've been wondering when the cause of autism will be discovered, and at some level wishing there were a test that would show definitively whether or not a child is affected by it. We already screen for so many disorders at birth, why not find a way to add autism to the list? The current diagnosis system is simply inadequate, sometimes leaving parents wondering for years what is happening with their child. However, I am now wondering if screening at birth (or before) would really be so beneficial for ASD children. In fact we already screen for Down Syndrome before birth, and many feel that a woman is justified in choosing abortion if their child tests positive. I'm sure you all followed the stir surrounding Sarah Palin and her son Trig. Autism is so misunderstood that early screening might be a death sentence for thousands.

Quite simply given all I have written about God's heart for children with special needs, it seems that we need to be their voice from the very beginning, that they might have the opportunity to participate in life itself.

Part one Inclusion
Part two Inclusion
Part three Inclusion
Part four Inclusion

Tuesday, April 14, 2009


Now I have to deal with one very important caveat to the inclusive practices I've been encouraging in my recent postings, and that is safety for all concerned. I believe the basis for this consideration can also be established in scripture. In Leviticus 13 God establishes practices in the people of Israel for dealing with infectious skin diseases. Verses 45-46 gives a clear directive, "The person with such an infectious disease must wear torn clothes, let his hair be unkempt, cover the lower part of his face and cry out, 'Unclean! Unclean!' As long as he has the infection he remains unclean. He must live alone; he must live outside the camp." To our modern ears this sounds harsh, but in the days before antibiotics, steroidal drugs, and hygienic processes this was the only way to protect the health of the larger community. One disease that was particularly feared, and for good reason, was leprosy. This devastating skin disease is still not completely understood and is not easily treated even with modern medications. In the days of the Old Testament a disease that lead to debilitating injury to extremities, skin, nerves, and eyes; and can be spread from one person to another through some still unknown mechanism would be a fearful thing. In order for the community to feel safe a person infected with such a disease would need to be quarantined, and because left untreated leprosy is chronic, the remainder of the person's life would be one of isolation except from others in a similar state.

There is hope, however, even in Biblical times. There are several stories of God healing lepers, including Miriam the sister of Moses (Numbers 12) and Naaman the commander of the army of Aram (2 Kings 5). In the New Testament Jesus touched numerous lepers and healed them (e.g. Luke 17:11-19). Clearly the heart of God was for these outcasts to be returned to society. In modern times a leprosarium known first as Carville and later as Gillis W. Long Hansen’s Disease (Leprosy) Center in Carville, LA was established as a refuge for individuals infected with the disease. The picturesque campus served as both a home and a research facility to develop treatment for the disease. Thanks in part to these efforts, there is now a method for diagnosing and treating the disease that allows infected individuals to re-enter society without risk to the greater community.

Can we extrapolate both the security of the community by isolation and the hope of re-incorporation to special needs children? There are times when either for the safety of their peers or for their own safety special needs children may need to be pulled aside. It is hard. We recently walked through a season of this with our own child. However, I believe the goal should be always to work toward re-incorporating the child as soon as it becomes safe for all concerned. The time of isolation should not be spent in ostracizing the child or further restricting their activities. Rather it should be spent in developing skills and strategies for them to re-enter "normal" life in safe ways.

Part one Inclusion
Part two Inclusion
Part three Inclusion
Part five Inclusion

Sunday, April 12, 2009

Easter for Everyone

What better day to continue to consider the inclusive heart of God than Easter. I'm sure many people have been confused by the modern argument that Christianity is an "exclusive" religion. This is a great misrepresentation of the true gospel. The word gospel means good news. How could it be good news if it were only true for some subset of people?

Our entire history hinges on Jesus' death on the cross and His victory over death on the first resurrection morning. Prior to His completion of the Father's work only a select subset of people, the Israelites -- those who had God's law, had the hope of salvation. After the cross and the empty grave, every person who believes in the name of Jesus can become a child of God (John 1:12). The inclusive nature can be seen in Jesus' ministry years in which His closest associates were primarily fishermen, and a tax collector. He reached out to outcasts: the blind, the lame, the lepers, the "sinners", and gentiles. He spent time with them, healed them, talked to them, and taught them that He would provide the way to God. In the end, by becoming the final sacrifice to appease God's justice and bestow God's mercy, Jesus opened the door for all of humankind to accept salvation by faith (Romans 5:18). In fact no one is excluded except by their own personal choice.

It reminds me of an old hymn by Ira F. Stanphill:

"Room at the Cross for You"

The cross upon which Jesus died
Is a shelter in which we can hide;
And its grace so free is sufficient for me,
And deep is its fountain as wide as the sea.

Tho' millions have found Him a friend
And have turned from the sins they have sinned,
The Savior still waits to open the gates
And welcome a sinner before it's too late.

There's room at the cross for you,
There's room at the cross for you;
Tho' millions have come,
There's still room for one --
Yes, there's room at the cross for you.

There is room at the cross for everyone if they will but come. This is the very heart of God.

Part one Inclusion
Part two Inclusion
Part four Inclusion
Part five Inclusion

Monday, April 6, 2009

Grace and Relationship

Disclaimer: I am not a Bible scholar, I am just a person who has read the Bible for 24 years, and heard countless sermons. I am a person who believes that we can use the Bible to understand the heart of God and therefore understand how He wants us to act. For some, it may seem like a stretch that the Bible has something to say about a “modern” topic like inclusion of special needs children, but there have been special needs people throughout history, and by examining what the Bible says about them we can learn a lot. I’m only going to focus on one passage in this post, but we’ll eventually look at more as we go along.

In II Samuel 5:8 we read that "The 'blind and lame' will not enter the palace" which sounds exclusive. Keep the disabled out, in essence, at least from the “best” places. Where does this statement come from? Reading a few verses before we learn that David, newly crowned as King of Israel, marched to Jerusalem to attack the Jebusites. David wanted Jerusalem to be the center of his kingdom. The Jebusites thought they were invincible because of the natural and man made defenses around the city, so they said, “You will not get in here; even the blind and the lame can ward you off.” David knew a secret passageway into Jerusalem called the water shaft, and said he would use that to reach, “the ‘lame and blind’ who are David’s enemies.” After David defeated the Jebusites and took Jerusalem, it became a saying that “The ‘blind and lame’ will not enter the palace.” Initially, at least, it appears this was a snub against the Jebusites, rather than those who could not see or walk. It is unclear whether or not physical exclusion from the palace eventually became the practice of the day.

However, a few chapters later (II Samuel 9) David fulfills a vow to his old friend Jonathan (I Samuel 20:14-17) by seeking out Jonathan’s son Mephibosheth so that he can show him kindness. Mephibosheth is crippled in both feet due to an accident when he was a young child. Apparently David could have used this as an excuse to avoid or limit his kindness. Instead, David gives Mephibosheth all of the land that once belonged to his grandfather, Saul, and tells him, “…you will always eat at my table.” (II Samuel 9:7). One might ask, if Mephibosheth was to inherit all of Saul’s land (and all of the servants to work the land) why did he need to eat at the King’s table (in the palace) every day? David is going above and beyond any standard of fairness or justice here. He is lavishing grace and a desire to have a relationship on Mephibosheth. It is, in fact, a picture of God’s grace to us. I believe it is also a clear picture of how God would have us treat those with special needs: with grace and an opportunity to build relationship.

Part one Inclusion
Part three Inclusion
Part four Inclusion
Part five Inclusion

Saturday, April 4, 2009

Inclusion Part One

I've been contemplating what my first official post should be about, and it's a hard choice. There are a lot of ideas tumbling in my head, but the one begging to get out is controversial even (or especially?) in this enlightened age: inclusion. Although I used to think that mainstreaming children with special needs was now the norm, I have since learned that the debate rages, and even with protections such as the Least Restrictive Environment (LRE) it is challenging to decide exactly what the LRE is for each child. Is it better to send a child into a regular classroom if they can participate there with the assistance of a one-on-one aide, or would it be better to limit the child's time in the regular classroom to activities when they don't need an aide. The letter of the law might imply the former, but in general practice the latter is more common. It's going to take me several posts to eventually get all of this out of my head...and the end may be more controversial than the beginning. So consider this a tease. Next post we'll examine Biblical wisdom on the topic as a start.

Part two Inclusion
Part three Inclusion
Part four Inclusion
Part five Inclusion


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