Wednesday, August 31, 2011

Movie Review - A Mother's Courage: Talking Back to Autism

A Mother's Courage: Talking Back to AutismMy husband and I recently watched the documentary A Mother's Courage: Talking Back to Autism. It is the touching story of a family who live in Iceland seeking more information and help for their youngest son, Keli, who is severely affected by autism. Keli's mother, Margret Dagmar Ericsdottir, a movie producer, sets out to film her journey so that she can share it with us. She visits many experts in Europe and the United States. Among these, she interviews Temple Grandin, who was diagnosed with autism and is now a Professor of Animal Science in CO and an autism author and advocate. Among other researchers she meets Dr. David G. Amaral who is the Director of Research at the Davis MIND institute in CA. Eventually, she finds Soma Mukhopadhyay who worked with her own autistic son in India and developed the Rapid Prompting Method (RPM) - a unique style of education and communication through tearing paper, writing, and pointing. Soma founded HALO in Austin, TX, where she continues to refine her methods and teach them to others. Along the way Mrs. Ericsdottir meets other parents whose non-verbal children were helped by RPM. They are able to use letter boards and electronic augmentive communication devices to express their thoughts and demonstrate their ability to learn in spite of all of their challenges. The movie itself is quite moving. One cannot help but love Keli and root for him as he begins to use RPM to communicate with Soma and his mother. Director Fridrik Thor Fridriksson is masterful in his use of dramatic cinematography to weave the tale of the mother's journey with the son's progress. Images from Iceland's rugged and beautiful scenery give some physical sense to the treacherous path this family must walk. I like that the film just tells this family's story without getting caught up in any of the controversies that surround autism (and there are many); yet it also gives a level-headed description of the various challenges that individuals with autism face. In this way it is a great awareness tool, particularly for families and friends of an individual who is non-verbal.

That is not to say the film is not controversial. I know there is some debate regarding the use of facilitated communication (FC) which looks at least on the surface like RPM. This article nicely summarizes the pitfalls of FC. The risk for fraud is great. If the facilitator knowingly or unknowingly guides the communication of the non-verbal individual then no true communication has occurred. If false information is passed it could be damaging to the affected individual or their family or caregivers. RPM is apparently distinct from FC in that no physical support is given to the non-verbal individual as they point or type. HALO has a frequently asked questions page where they explain the differences as they see them between RPM and FC. I haven't had much time to research and delve into this controversy, so I recommend doing your own research. My gut feeling tells me there is certainly space for fraud to occur and that great care should be used when investigating and using such techniques with anyone.

Finally, stories like this always make me wonder...what has happened since it started? The movie was made in 2009. What has happened to Keli since the film was made? I did a little Google searching, and didn't find much direct information, but evidently Keli continues to use RPM to communicate with his family, and to write poetry. Kate Winslet, who narrates much of the documentary, is working together with his family and a group of Hollywood celebrities to publish some of his poems as a way to raise funds and awareness for families affected by non-verbal forms of autism. You can read more about that project, The Golden Hat, here. It is due for release in November 2011 - I am not much of a celebrity-phile, but I'll be watching for this.

This individual story is heart-warming, and the ideas and questions it surfaces will draw in a broad audience. As always your thoughts and comments are welcome. 

Friday, August 26, 2011


A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. She is like the merchant ships, bringing her food from afar. She gets up while it is still night; she provides food for her family and portions for her female servants. She considers a field and buys it; out of her earnings she plants a vineyard. She sets about her work vigorously; her arms are strong for her tasks. She sees that her trading is profitable, and her lamp does not go out at night. In her hand she holds the distaff and grasps the spindle with her fingers. She opens her arms to the poor and extends her hands to the needy. When it snows, she has no fear for her household; for all of them are clothed in scarlet. (Proverbs 31:10-21, NIV)

I wanted to continue looking at the Proverbs 31 woman this week, continuing to focus on her character rather than her activity. So far we have seen that she is noble, precious, eager, vigorous, strong, profitable, prepared, and generous. It is still quite a list, but each of these qualities comes from a heart that seeks its value from God rather than selfish effort or material goods. Today we see that this woman has no fear for her household. In particular it refers to a snow storm, perhaps even a blizzard. It may be a bit hard to picture snow in Israel. We generally picture Israel as a hot, desert land, which it is - similar to the Los Angeles basin. However in the northern hilly regions (Mt. Hermon in the Golan Heights) it snows yearly, enough to support skiing. Safed, Jerusalem, and the hill country of Judea can get snow every few years. At any rate it is not unthinkable that this woman faces the occasional snow storm with her family. During such storms she clothes them in scarlet, probably wool that she has made with her own hands. The scarlet, deep red color would keep them visible during white out conditions. The wool would keep them warm. Such clothing is associated with wealth and well-being (though not always in a positive sense, see II Samuel 1:24 and Revelation 18:16.) There are a couple of points that make this really powerful imagery for me:

  • First, it shows again the preparedness of this woman. She knows the dangers that her household may face. Not just family, by the way, but also servants needed to be provided for in times of danger. She knows they will face the occasional blizzard, so she prepares appropriate clothing for this danger. With all the big storms and earthquakes lately, and the instant, global publicity they can receive, emergency preparedness is big in the news lately. Around here we don't have to worry about blizzards. We have earthquakes and brush fires. There are certain precautions that we need to take to be prepared for these hazards. More importantly there are spiritual hazards that we need to be aware of and preparing our household to face: materialism and moral relativism spring to mind. We need to "clothe our families in scarlet" - giving them a foundation of the true Gospel to keep them safe in these spiritual blizzards.
  • Second,  I can't help but be reminded of the well known verse Isaiah 1:18 - "Come now, let us reason together," says the LORD. "Though your sins are like scarlet, they shall be white as snow; though they are red as crimson, they shall be like wool..." (NIV) It's the same interplay of colors - scarlet and snow - but in many ways an opposite image. Our sin, in this metaphor, is what makes us stand out starkly on the white background of God's holiness, but He has the power to make us white as snow.

No matter how you look at it, it is God that keeps us safe in the storms of life and God that can wash away our sin and make us pure. Once again our hearts must turn to Him in order to be confident for ourselves and our family.


Monday, August 22, 2011

Camping Special Needs Style

We just returned from our third annual camping trip. It was the best trip yet, and I thought I would share some of the things that have made these trips work well for our family. Camping is a wonderful experience, but not without quite a bit of planning, preparation, and a little bit of luck. When considering camping with a child with special needs there are some extra considerations to take into account...

Explore your options - Many state parks have campgrounds with ADA accessible sites and restrooms. Do some Internet searching to find out what is available, and what will best suit your family's needs. Aside from physical access, consider what activities are most appropriate - swimming, hiking, fishing, and educational programs may all be available. Where we live it is best to reserve your camp site far in advance, particularly if you need an ADA site. We made our reservations in March for camping in August.

Safety in numbers - We have not tried camping with just our family yet. We have made all of our camping trips with a group of families that all have children with special needs of various types. This year we had seven families with a total of 24 people, and children ranging from 2.5 years to late teens. The advantages to this arrangement include dividing up the work, and sharing gear (see below). It also helps to have extra adult eyes around to watch your children while you are setting up your tent, cooking, or cleaning up a meal. For us it helps that all of the other families are familiar with various special needs, but you could just as easily go with some good "normative" friends, as long as they get it when you have to accommodate and support your child in various ways.

Safety in mind - Find out the particular safety concerns for your selected site. We have camped in bear territory twice now, though we haven't seen any bears (thank goodness!) we have to be careful about storing food, gathering trash, and generally keeping a neat and tidy campsite. There are other concerns like snakes, rivers, lakes, poison oak/ivy, etc. that you should keep in mind, plus sharp and hot tools that may be easier to access than usual. Carefully arranging your campsite and straightforward, frequent, clear warnings to your children help contain these risks. Nothing beats vigilance and preparation.

Find out what you will need - I found this packing list website this year, which helped us have pretty much everything on hand that we needed. Their list has extra space in each category for you to fill in any extras that you might need for your family. Here again be aware of your campsite's environment and amenities. Some have modern restrooms, others not so much. Our camp has frequent afternoon thunderstorms (not this year!) so having rain gear and dry firewood are a must.

Gather your gear - So camping gear can get pretty expensive, but by working together with your camp mates (if you choose this route) you can often share common gear like cook stoves, pots and pans, canopies, eating utensils, chairs and tables. We have added a piece or two of new gear to our stash each trip - this year we bought another air mattress and sleeping bags for the twins. You can borrow or rent gear, too. So far we borrow our tent every year.

Expect it to be messy - Driving into our campground this year we saw some children hiking by the road who were filthy from head to toe. We laughed and said, "Give our kids five minutes and they'll look just like that." It was true. It is easy to get dirty when you're camping, and dirt doesn't hurt (except maybe in the case of children with compromised immune systems, in which case, well you know best how to handle this...) There will also be times that you have to be flexible and inventive if you forget to pack something (like your daughter's swimsuit...ahem) or when your kid wants a nap when everyone else is setting out for a hike. Although this can be challenging, I also view it as a great way to stretch our daughter's coping skills. I really did forget her swimsuit this year, and she very calmly accepted the alternative of wearing some shorts and a tank top into the pool...a year ago that would have been unacceptable to her.

Have you ever taken a camping trip with your family? What tricks did you learn to make it work well for you? Thanks for sharing!

Saturday, August 13, 2011


Trisomy is an umbrella term for several genetic conditions in which three copies of one or more chromosomes is present in the cells of an individual rather than two copies of each chromosome. Usually human cells have 23 pairs of chromosomes for a total of 46. During the process of producing eggs and sperm (Meiosis - scroll down to "Making New Cells and Cell Types" in this link for detailed description and diagrams) the parent's chromosomes (2n) are divided in half among "daughter" cells. Usually each daughter cell gets half (n) of each chromosome pair. Trisomy occurs when one daughter cell gets an extra copy of a chromosome (n+1) due to nondisjunction (the chromosomes do not separate). The other daughter cell loses a copy (n-1), which results in monosomy. Upon mating an n+1 gamete combining with an n cell from the other parent produces an offspring with 2n+1 chromosomes (trisomy). An n-1 gamete combining with an n cell from the other parent produces an offspring 2n-1 chromosomes (monosomy) -- these zygotes are generally not viable.

In the process of researching this post I drew myself a diagram to consolidate some of the information I was gathering, to illustrate the formation of a 2n+1 zygote. I'm sharing it here with a couple of disclaimers. Please note that this is only one sequence that could lead to trisomy. Also, I am not a molecular biologist, so my diagram may be overly simplified, but hopefully is clear enough to explain the basic steps. Click on the picture to see a larger version...

Trisomy may result in conditions that are life-threatening to the offspring. In some cases the child will have severe physical or cognitive challenges. In other cases the issues can be so mild as to go undiagnosed. The latter is particularly true of  some sex chromosome trisomies.The degree of severity appears to be related to the amount of genetic information that is affected. Because the chromosomes are numbered according to size, with 1 being the largest chromosome, the lower numbered chromosomes are responsible for more DNA or genetic information than the higher numbered chromosomes. Trisomy 21 (Down Syndrome) affects one of the smaller chromosomes, fewer genes are affected, and so fewer challenges affect the developing child relative to trisomy of lower numbered chromosomes.

There are several kinds of trisomy that affect the autosomes (the non-sex determining chromosomes):
Trisomy 8 - Warkany Syndrome
Trisomy 9
Trisomy 13 - Patau Syndrome
Trisomy 16
Trisomy 18  - Edwards Syndrome
Trisomy 21  - Down Syndrome
Trisomy 22  - Cat eye Syndrome

There are also several kinds of trisomy affecting the sex chromosomes:
XXX - Triple X Syndrome
XXY - Klinefelter's Syndrome
XYY - XYY Syndrome

I hope to explore each trisomy in more detail in future posts. For now I hope understanding more about how these conditions arise has been helpful. I also wanted to share a link for SOFT (Support Organization For Trisomy 18, 13, and Related Disorders), an organization that supports families affected particularly by Trisomy 18 and 13. Besides Down Syndrome, these are the most common forms of trisomy, and finding support is a critical step.

Sunday, August 7, 2011

Sunday Digest 35

Just to let you all know, I've shifted to a new blog schedule...I've been finding it increasingly difficult to get two posts plus a post at 5 Minutes done each week. Part of this is because my usual writing time (nap time!) is starting to vanish, and part of this is because I'm trying to take a more active role in my husband's business. I am hoping to do one post each week here, and keep my posts at 5 Minutes flowing, too, plus any other guest posts that come my way. I may have a couple of guests pop up here, soon, too. We shall see. This may also free up some time to work on a couple of other projects, which, if they come about I will tell you about in due time.

To the business of the is digest time! Here are some interesting links I've come across as I've roved the Internet lately:

1) These first two links I heard about via my fellow blogger, Autism and Oughtisms. She shared them on facebook. I am increasingly interested in learning about the brain, and what happens when it isn't working normatively. This article focuses on autism, perhaps explaining a piece of language confusion in autism where the affected individual reverses pronouns - calling themselves "you" and others "I." It seems these researchers have found that the white matter connections between two  areas of the brain are faulty - picture a short circuit between the light switch and the bulb. I find this particularly fascinating as my mother-in-law apparently has similar white matter deterioration, but in different "circuits." Brains are miraculous!

2) This second link is more practical and discusses first responders' need to learn how to best help an individual with autism during an emergency. Emergency preparedness is a big topic these days, and one that requires special attention if you are a caregiver to an individual with special needs. Some local first responders have registries where you can notify them in advance if you think special equipment or specific information will help them give better aid to your loved one with special needs. Check it out and be prepared.

3) Another friend from down under SquiggleMum posted this "how to" on building an outdoor play kitchen with her kids. It is adorable, and NOT expensive, and I imagine they are having all sorts of fun, creative, imaginative, social play out there. What fun!

4) This touching piece by Tim Gort over at Hopeful Parents explores what happens when a man becomes a dad.

5) Last but not least, my fellow 5 Minutes contributor, Maggie, shared a success story for her twin boys. Thanks to the dedication of a lifeguard and some appropriate individualized instruction they are learning to swim! Can't beat that!


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