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.

Wednesday, September 16, 2009

Book Review - Emergence, Labeled Autistic

I have been thinking about this book quite a bit lately. It is a book I read shortly after our daughter's initial diagnosis of an autism disorder. I was reading everything I could about autism, but I was especially interested in trying to "get inside" my daughter's head and understand what she was experiencing. A good friend recommended this book. For those who may be unfamiliar, Temple Grandin, the co-author of this book and several others on related topics, is autistic. She was diagnosed with autism as a toddler (early 1950s) and struggled to overcome her various challenges and succeeded in many ways. Her mother, in particular, refused to accept certain expert opinions that her daughter's autism was cause for sending her away to an institution. Instead she devised an intervention program with speech therapy, play therapy, and individualized education programs at private schools. Thanks to her mother's perseverance, Dr. Grandin eventually learned about animal behavior, earned her Ph.D, and now teaches animal science at Colorado State University.

Dr. Grandin writes about several interesting facets of her autism. One is that doorways had a great sense of meaning to her. In particular she was anxious about passing through automatic doors, essentially having to force herself to run through them in order to enter a store; but at the same time she was always looking for what she called the "door to heaven", a doorway that would lead her to a place of comfort and calm. She also learned that she liked to feel pressure all along her body, but could not accept this sensation from human contact - a hug or embrace. While visiting her aunt she discovered a cattle chute and experimented with developing a device for people that would provide the "right" amount of pressure to calm them. Her experiments with this device eventually lead to her career in animal science.

One thing I've learned from reading this book is that reading one autistic person's biography is not sufficient for "getting into the head" of another autistic person. There is a saying that if you know one autistic child then you know one autistic child, and I have found it to be quite true among our special needs community. There are some interesting parallels, though, in Dr. Grandin's story and things I observe in my daughter. Doorways signify transitions, a common challenge for people with autism. Interestingly, my daughter is currently fascinated with the automatic doors at our nearby supermarket because there are four swinging automatic doors, but only two are for going in and two are for going out. The other day she wanted to go "out" one of the "in" doors and I explained that it wouldn't be safe to do that because if someone else was coming in she might get hit with the door. Now she just wants to choose which door to go in (or out) but she always comments on how we have to go in (or out) the right ones. Another similarity is the need for pressure. My daughter currently seems to crave this around her head area. When she is at home she has a white mesh laundry bag that she ties around her head as if it is a wig of hair.

Dr. Grandin's story is one of challenge and success, and one that I think is quite enlightening and a must-read for those who live and work with autistic individuals. It is definitely an encouragement to all parents of special needs children to support their children in any effort to find their place in the world. It just might be a very significant place.

Sunday, September 13, 2009

Sunday Digest 7

Last week was interesting to me because of some strong reactions I had to certain events that reminded me of how proud I am to be an American. A dear friend of ours (my husband's best man in our wedding) chose to become a United States citizen. Our church honored his decision by asking him and his wife to come forward during our regular service so that we could pray for them. As they came forward our worship band played "America the Beautiful" and everyone in the congregation sang on the chorus. It brought tears to my eyes as I considered that this dear friend had made the choice to join our wonderful country. Later that week we hosted a small dinner party at our home to celebrate his swearing in ceremony. Then Friday, the eighth anniversary of 9/11, I spent the day "fasting" from facebook and twitter. It seemed trivial to post anything beyond a status of "Never forget," so I made that my message at 12:01 am and left it that way all day. Every time I thought about posting something to facebook I would remember my current status and why I had chosen to do that and I remembered the turning point of 9/11 for our country. I was surprised and a little appalled at the scant notice given to commemorating the victims of the 9/11 attacks. Perhaps the most moving event was late in the evening when I had to run an errand. I drove on the freeway near our home under and overpass where each year (beginning in 2001) a group of patriots stands above the freeway behind United States flags hanging on the overpass. It causes a mini traffic jam as motorists slow to see the flags, wave, honk, and wipe their eyes as I did. We do still love our country. We are proud when others choose to join us in that love. We are sad and angry when others wish to do us harm. Above all we remember. Today I'm posting simple links to blog posts and other items that recall the first 9/11. The only 9/11 that we should Never Forget. God bless the United States of America!

Solemn at Hopeful Parents
Implications of 9/11 and the disability community at Specialgathering's Weblog
Matthew's Center made cookies and delivered them to first responders
Another Year Past 9/11 at BellaOnline
Get Prepared America at

Thursday, September 10, 2009

Learning Patience from a Child - Fruit of the Spirit Part Four

There is an old joke that says you should never pray for patience because all you'll get is trouble. It is true that it's a scary request, "God give me patience..." Doesn't that mean you're asking Him to help you wait even longer?

I am not a patient person. Nine times out of ten I just want to get "it" done, whatever "it" may be: lunches made, bath time over, laundry put away, attitude adjusted, request met. Did God know this character quality in me needed work when He gave me a child who needs to hear multiple times that Daddy isn't home yet when she can see for herself that he isn't? Or perhaps, be told five times to put her seat belt on while I load up her siblings, the stroller, her school supplies, etc. I am learning to say it calmly still on the fifth time, or to be more proactive in supporting her through these events (and countless others) before I lose it. I am still human, however, and am prone to fail in this area, particularly when all of the children seem to gang up on me and stop listening. The babies do this because they are still little. Twenty months means just a little more impulse control than eighteen months. The child does this because she is still learning to check her impulse control and stay in a regulated state where it seems like a good idea to listen. How do I check my impulses when they aren't checking theirs? Someone has to be the grown up, and it would appear to be me.

I can grow in this area through my relationship with my child. First, as I mentioned above, God is using my daughter to stretch my patience quota. A year ago I would not have tolerated all the repetition, the disregulation, and the monotony of minutiae that she needs to know. Now I am seeing all of those things from a new perspective that helps me stay calm much more of the time. Secondly, I can learn by watching my daughter. Although she can be quite flighty and distractible, nothing can deter her from achieving a goal that she has set her mind on. For example, it is normally quite challenging for her to "stay in the lines" on a coloring page, but a few weeks ago she did just that because she wanted to do a good job making a thank you picture for a friend of ours. She spent the better part of an hour painstakingly maintaining her fine motor skills to finish that picture. When I know it will be hard for me to do something I sometimes give up before I even start, but she patiently applied herself to the task she had set for herself and I was humbled by her perseverance. Lastly, I can learn patience by trying to see things from her perspective. I imagine there are times when she gets just as frustrated with me, and while she often lets me know it, there are other times when she just repeats what she has already said hoping that it will eventually sink into my thick skull. I can sometimes see the gears of her mind turning, "Why doesn't Mom get this? I've explained it so many times..." and then she says it again.

I close with a children's song that I learned when I was a child...if only I could learn to apply it as easily as I learned to sing it!

Have patience.
Have patience.
Don't be in such a hurry.
When you get,
you only start to worry.
that God is patient, too,
and think of all the times,
when others have to wait for you.

Monday, September 7, 2009

Picture This

What tools do you use to navigate your day? Some people can get by with a to do list scribbled on a post-it note. Others have a day planner or some electronic personal assistant that reminds them of appointments, tasks, events, etc. My current system involves a one page spread sheet that shows me my entire week's plan in a glimpse. It takes me a while to put it together each week, but then I don't have to think too hard about it the rest of the week. Almost everyone has some system for keeping track of what they need to get done for the day, and most people don't give a second thought to whatever system they use until it breaks down for some reason - their to-do list gets lost, or their PDA goes through the washing machine...but no one I know feels inadequate as a person because they use these tools, it is just a way of life.

Special needs children often need similar support systems tailored to their individual needs. One very useful tool is a picture schedule, and although it can take some time to put one together, it is well worth the investment.
  • When I made the schedule we use with our daughter I started by finding a pocket chart holder for $1 at a local discount store. You can usually find these at teacher supply stores. I'm sure with some creativity one could also make a similar chart. Mine is a colored vinyl backing with clear plastic pockets on the front. The pockets are about 1-inch high and 2-feet wide and hold strips of poster board.
  • I made a list of all of the places we go with our daughter in a normal week: school, after school program, church, errands, swim lessons, etc.
  • I also brainstormed special events like parties, play dates, and special outings (like the zoo).
  • I looked through our digital picture files and found photos to represent as many of these places/events as I could. It's good to find pictures of your child in those places if possible as it lends an extra dose of familiarity.
  • If you need to, carry your camera around for a week and take pictures of places that you need for your schedule.
  • For some places, like the grocery store you can also find clip art on-line for the brand/trademark of the business. Other simple clip art images can be used to represent more rare/diverse events. (For example our party picture is just a cartoon package, party hat and confetti because I didn't want my daughter to be confused by one particular party location/person/occasion, etc.) I compiled all of these pictures and images into a word document and cropped and sized them to fit onto 1-inch high by 14-inch wide strips of white poster board.
  • On each strip I wrote the name of the location or event. Since our daughter doesn't read yet, the words are mostly for my benefit, but I did keep the labels simple in hopes that the word/picture symbols will be connected in her mind.
  • Each day when we use her schedule I insert the appropriate strips into each pocket. Sometimes I do this before I show it to her, and other times she wants to be involved in the process. Either way she goes into her day knowing the major events that will occur, who she will be with in each setting, and when she will get some time to rest.

I should be clear that we don't use the picture schedule every day. It is most useful to us during more unstructured times (like Summer), on days that I know will be out of the routine or especially busy, and at times of transition. Some children will need the schedule every day. Some will need to be told just a few events at a time. Some might need more of a "first, then" chart where they are told two activities at a time with pictures, "First we will brush teeth, then we will read a story." The basic idea is to learn what level of support your child needs and build your picture schedule accordingly. For example, we know that a very key transition for our daughter is going home from school. She needs to know who will be picking her up each day. We learned this the hard way after several tantrums occurred during this part of the day. I have a strip in her chart that says "Go Home with Mommy" with a picture of me; and the reverse side says "Go Home with Daddy" with a picture of my husband. Having that piece of information might be unnecessary for some children, but for her it is essential.

As a side benefit, when we build her chart together, I am able to think through the plan for the day and see the places and events where she will need more support. In particular she often either asks questions about a certain event or says something that reminds me to clarify some piece of the plan. It basically reminds me of when and how to prime her for each major point of the day. I highly recommend using this tool if your child is dependent on routines, priming, or has difficulties with transitions. It has been invaluable for us.

Friday, September 4, 2009

Co-teaching and Controversy

I knew going into the school year that there are a lot of controversies surrounding public education, particularly in the Christian community (home school/private school/public school, moral issues, anti-Christian bias, etc.) Add to that recent political controversies (President Obama's school address on Tuesday, environmental issues, school vouchers, etc.) and all the controversies about how special education should be delivered, and you have one big pot of roiling diatribe from every quarter.

This story and the ensuing comments cover just about all of it. I was particularly interested since we've made the leap back to a general education setting (with support) for our daughter. It looks like such a sweet innocent tale: one school district's approach to meeting the Least Restrictive Environment (LRE) requirements of the Individuals with Disabilities Education Act (IDEA) is to pair a general education teacher with a special education teacher in one general education classroom. While not exactly two teachers for the price of one (presumably they both wish to be paid) it would seem the best of both worlds for all concerned. The general education teacher can focus more attention on normative students, the special education teacher can use their skills to help students that need more support, special needs kids get the support they need to thrive in a normative setting, and normative kids get some extra support too, while also hopefully learning a lot about how to be accepting of others' differences. Yet you can see from the comments that people take issue with this system, and the debate moves from inclusion to school vouchers and even racism.

Is anyone else feeling like we all need to take a step back and realize that the information age may be turning us against one another in some drastic and probably unnecessary ways? Can we all agree that every child deserves the best shot they have at the best education possible? Can we all agree that autism, in particular, but also other special needs are increasingly common disabilities that everyone will need to know about and be "comfortable" with? Can we agree that any system that pairs more than one child with one teacher will mean an imperfect education for each child? Can we get off our high horses long enough to listen to what each of us is saying before jumping down one another's throats?

My point is that I don't think anyone has a completely perfect idea of how to handle the special education needs of the growing population of special needs children, but they do have a right to that education. No system will be perfect, but that doesn't mean we should shoot down new ideas. The idea reported in this story seems to be working for this student, these teachers, and perhaps it would work for others. In my opinion that's a better outcome than can be achieved by people sitting around snarking at each other and not trying anything.

Tuesday, September 1, 2009

The Peace of God - Fruit of the Spirit Part 3 cont.

The Greek word for "peace" used in Galatians 5:22 where Paul lists the fruit of the Spirit is eirene (i-ray-nay) and means one, peace, quietness, rest, and by implication prosperity. I could end the post there. Sounds like something I could really use!

Two passages came to mind as I started thinking about what "peace that God supplies" looks like. The first is from the Gospels, and in particular Mark 4:35-41. Jesus and his disciples are boating across the Sea of Galilee after a long day of teaching. Jesus is tired and falls asleep in the boat. Suddenly a violent storm threatens to swamp the boat. In between bailing, the disciples wake Jesus up and ask if he cares that they're about to drown. Jesus gets up and "rebukes" the wind and waves. In the NIV he says, "Quiet! Be still!" but as I remembered, in the KJV the Greek word (siopao) is translated "Peace!" The Greek word means "involuntary stillness or inability to speak." In other words, Jesus commands the wind and waves to be mute, and they obey! There are two amazing pictures of peace in this story: Jesus who sleeps in the midst of the storm, resting in His Father's care; and Jesus commanding the elements of nature to be peaceful, reigning over His creation.

The other passage is one of my favorites. I've probably already quoted it in previous posts in part because I live or die (figuratively) by this passage every day.
Do not be anxious about anything, but in everything, by prayer and petition,
with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7 (NIV)

I could spend several posts on this verse alone but I'll try to sum it up briefly. First I should point out that this word for peace is the same as that in the Galatians passage. The peace of God is the central idea of the verse. In order to receive His peace we must first by prayer, petition, and with thanksgiving make our requests known to God. If I'm not peaceful, prayer should be the first course of action. We are promised that God's peace is beyond human comprehension and that it will guard both our hearts (center of emotion) and our minds (center of logical thought).

To tie the two passages together, I think it is interesting that our hearts and minds are guarded "in Christ Jesus". The same Jesus who slept soundly in the middle of an overwhelming storm and then bid it "Peace!" is the Jesus who will watch over our hearts and minds as they toss and turn through the storms of life. That is where I want to be!


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