It's Like Riding a Bike

Time for a heart warming story. Do you remember when you learned how to ride a bike? I harbor fond memories of Summer days spent tagging along after my older brother. Playing "Dukes of Hazard" (I was always Daisy, and yes, I do know that I'm dating myself here...), jumping on the dirt bike trails, and racing to get back home. Of course there are also the skinned knees, and in my case broken noses that come along with the occasional wipe out, but it is all part of growing up, usually.

I spotted this news story on my Google reader and it spoke volumes to me. This is what accommodation is all about. This little girl, Rachael, has been through so much and has lost so much. It might be easy to say, "Wow, she's lucky to be alive and to have adoptive parents who love her so much." To know that she wants the chance to ride a bike and experience what so many of us have taken for granted, is to realize that living is about more than just surviving. Thankfully a group of engineering students at University of Southern Carolina (the other USC!) are working on developing a bike just for Rachael. You can read the full story here or watch a video here.

Here's hoping that Rachael will soon be pedaling her way to new childhood experiences asap, and cheers to the young men who are working so hard to make that possible.

Angels Part 2 Strangers Among Us

This is the second of eight posts based on the Bible Study Guide "Angels" by Douglas Connelly, A LifeGuide Bible Study. Today's passage is Genesis 18-19, which describes encounters that Abraham and his nephew, Lot have with "men" who are later revealed to be the LORD and two angels incarnate. Abraham is resting in the shade of his tent during the heat of the day when three strangers approach his tent. According to the custom of the day he prepares a hasty meal for them, offers them water to wash their feet, and a place to rest before they continue their journey. While the strangers are eating they ask him about his wife, Sarah and then predict that she will give birth to a son within a year. Sarah overhears the conversation from where she is working in the tent and she laughs "to herself" at the idea that she will bear a child in her old age. The men ask why she laughed and assert that nothing is too difficult for the LORD. After this initial indication that these men are not typical travellers, Abraham walks with them as they begin their journey. One (now called the LORD) lingers behind to talk to Abraham and the others continue on to Sodom, where Lot lives. The LORD tells Abraham that He is planning to destroy Sodom and Gomorrah because He has heard a great outcry against them. Abraham "argues" with God about sparing the cities for the sake of the righteous who live there, thinking specifically of Lot. Meanwhile, Lot meets the other two travellers (now called angels) at the city gate of Sodom in the early evening. Lot offers them a place to stay. While they are eating Lot's house is surrounded by the men of Sodom who want to have sexual relations with the strangers. Lot goes out to reason with his neighbors, but when the crowd becomes violent the angels pull him to safety inside the house and strike all the men of Sodom with blindness. The angels then warn him that God is about to destroy Sodom and Gomorrah and that he should gather all of his family and flee. Lot's sons-in-law don't heed the warning, but Lot, his daughters and his wife all leave Sodom. The angels warn them not to stop and not to look back, but Lot's wife looks back and is turned "into a pillar of salt."

One key thing to recognize in this passage is that these angels appeared, at least at first, to be just like any other person. Abraham offers them food, rest, and water. Lot also extends hospitality. The men of Sodom offer carnal pleasure. No physical features indicate the exceptional nature of these visitors. Still it is clear they have special knowledge - they know specific, personal events to come for Sarah and Abraham; and they know the larger picture of God's plan for Sodom and Gomorrah. They also have special powers - they struck the men of Sodom with blindness so as to create a diversion and buy time to allow Lot and his family to escape. They are messengers both of mercy - to Abraham and Lot, and of judgement - to Sodom, Gomorrah, and Lot's wife.

Also note that Abraham and Lot welcomed these strangers before being blessed with personal promises and warnings to flee to safety. Though not necessarily on the look out for such an encounter, Abraham and Lot both practiced hospitality and welcomed the presence of the angels in their lives.

Have you ever experienced angels in your life? Do you welcome their appearance? In Hebrews 13:2 we are urged to "entertain strangers" in case the strangers turn out to be angels on a mission of mercy. Are you ready?

Olympic Fever

It has struck our house big time. We ordered up the local channels from our TV provider for the express purpose of recording and watching as much Olympic coverage as possible. It has been amusing to introduce our children to the wonders of winter sports. The toddlers giggled like maniacs while watching the luge competition. They were transfixed by figure skating. Our oldest daughter thought it was pretty amazing that four people can all snowboard the same course at the same time (me, too) and wanted to know if roller skates could work on the ice, too. She doesn't have ice skates, you see.

There have been a couple of touching moments for those in the special needs community. I was glad to see Rick Hansen, a paralympic athlete, included in the torch lighting ceremony, though disappointed he was not one of the official lighters. I also enjoyed the story of Alexandre Bilodeau who won Canada's first gold medal on home soil in Men's Freestyle Skiing. He draws a lot of inspiration from his older brother, Frederic, who is affected by cerebral palsy.

With these advocates on the big screen there is a whole network of people that work tirelessly all year long with somewhat less fanfare, though their name is well known. The Special Olympics provides excellent opportunities for individuals with special needs to find something they can excel at. There are a lot of fundraising opportunities for The Special Olympics. Each local organization does their own fundraising. I've read of Polar Bear Plunges in Utah and Celebrity Ski Weekends in Nevada. There are a lot of other ways to get involved, too. With the spotlight on Vancouver in 2010 I can't think of a better time to check it out and see what you can do.

Book Review - Mother Warriors

As promised I am reading and learning more about the GFCF diet/anti-vaccine camp of parents of children with autism. The first step for me was reading Mother Warriors which is, in part, a Jenny McCarthy memoir of her decision to "go public" with the treatments she was using to "recover" her son from autism. Along the way she meets other mothers who have tried bio-medical and other non-traditional treatments to try and better their children's lives. Ms. McCarthy weaves their stories with her own which is distracting at times, but does put it all in context. Reading this book was challenging to me on many levels. I don't intend to alter the approach we currently have with our daughter because it is working, but I needed to understand what all the furor is about. I think I understand pieces of it now...even if I don't fully buy into it.

The most important thing I want to convey is that by and large the parents who tell their stories in Mother Warriors are describing children who are seriously physically ill: suffering grand mal seizures that require resuscitation, severe gastrointestinal distress, rashes, days of extreme regression, etc. and they're being told by traditional doctors that there is "nothing they can do." Watching your child suffer such physical trauma would raise the hackles of any mama worth her salt. I recently had the displeasure of attending our son in the hospital for several days after he aspirated a chewed up piece of apple. On our third day when he wasn't recovering as I expected and no doctors had come by to check in with us you can bet I started to put up a fuss. If I had been told there was nothing they could do I wouldn't have stood for that either. Parents just know there is something that can be done, and we will find it. These parents, facing much more dire circumstances than the one I walked through, are simply finding something they can do for their children, and in many cases in their opinion it is working. This I admire to the extent that they aren't just willy nilly throwing in one therapy after another, which is not the approach that the parents Ms. McCarthy interviewed took. They did their homework. They tried one thing at a time.

If at the same time you were told there is no known cause for your child's severe suffering, you would start to look for the cause on your own. If you became convinced that the cause of your child's severe illness is something that practically every child is exposed to as a matter of course you would add that to your list of things to get out and shout about. This group has a lot of anecdotal evidence suggesting that their children had severe reactions to vaccinations. They are entitled to their opinion, and certainly it is something that needs to be studied in an unbiased well-controlled experiment. Even with a 1% population affected by vaccines (if the theory is correct) do we risk the other 99% to what can be extremely serious and life-threatening illness? In addition, there are some questionable nutritional/medical sidebars in the book. One mother describes giving her child a gallon of milk to drink every day (hyperbole?) and not wanting to remove that to follow the GFCF diet. I've been told that current best practice is to never give a child more than 24 ounces of milk per day. I'm not at all surprised that her child was having severe gastrointestinal problems.

One thing I did not enjoy is some of the language used in the book. It is, shall we say, uncensored and not PG. I have mentioned my aversion to such things in earlier reviews. I know this is how everyone talks these days and I suppose it makes it "realistic," "passionate," and "cathartic." In my opinion it also makes it unprofessional and crude.

I was also confused by one chapter (Chapter 20, The Power of Believing) which starts with a letter from a parent who wants to know how she can be sure biomedical treatments will work for her child. Given the expense and time required for these treatments she is hesitant to try without assurance it will be effective. Ms. McCarthy admits that she has no idea if the GFCF diet or other treatments she publicizes will work. She even says that many kids don't need the biomedical interventions. She says she wondered about these treatments for all of two hours before deciding to proceed with her son (again if my son were suffering severe seizures I might not hesitate long either). In the next paragraph she is back on her soap box urging us to heal our children and not second guess the treatments. So are we allowed to question them or not?

In that same chapter Ms. McCarthy also discloses her new age approach to spiritual life. Throughout the book she talks about praying to (or yelling at) God, but here she explains (sort of) the "law of attraction" which seems to state that I just have to picture the way I want things to turn out and that will be the way it is. Stunning. Let me just pause a moment to conjure up an image of our family owning a private island complete with mansion, maid, butler, and trained dolphins for pets. I'll be sure to publish a farewell post when this vision becomes my reality. Ms. McCarthy uses this in the context of visualizing your child healed. Did it ever occur to her that none of us visualized having a child that needed healing, and yet that is our reality.

In short, I'm glad I've now read Mother Warriors, and I definitely have more reading to do.

Sunday Digest 14

Happy Valentine's Day to all my readers! I think today's links have a common theme of how much we as a society, as a Christian community, and as individuals have to learn about love.

Love is patient, love is kind. It does not envy, it does not boast, it is not
self-seeking, it is not easily angered, it keeps no record of wrongs. Love does
not delight in evil but rejoices with the truth. It always protects, always
trusts, always hopes, always perseveres. I Corinthians 13:4-7 (NIV)

1) This on-line article at ChristianityToday.com considers a Christian response to a research study aimed at developing drug therapies for individuals with Down Syndrome. Should developmental delays, particularly those caused by genetic variations be considered as a disease to be cured? If treatment is administered does it mean we don't value that individual as they are created? Interesting questions and comments...

2) This blog post by Shatter Nicely makes me sad. Though clearly only one component of what pushed her away from Christianity, I hope this church's (small c) response to a special needs child (ADHD) and his parents is becoming a thing of the past. I'll have to finish reading this series.

3) More from crosswalk.com on eliminating the R-word from our vocabulary.

4) A beautiful video I first spotted on 5 Minutes for Special Needs. It says a lot!

5) To provide the best care for our children we need help in a lot of areas. This post at Hopeful Parents suggests three key areas that are the foundation of a strong support system.

Persistence

There are very few things in my life that I've made a conscious choice to quit - my Ph.D. Chemistry career being one of them after more than a year of trying to juggle that with being a mom to a child who it turns out was not a typical baby. Generally once I've set my mind to doing something it is going to happen one way or another. It has been a good thing, for the most part, to be so stubborn, or to put it nicely, persistent. It is one piece of my character that I'm happy to see I passed along to my daughter. Although at times it can be annoying (like when she's asking for a cookie right before dinner time) her strong will is going to be a key ingredient in overcoming her challenges and being all that she can be in spite of them. I've been thinking about this a lot for the past couple of days after watching her through a couple of gymnastics classes.

These classes are challenging from the get go - happening at the end of a six hour day of school, and with a somewhat awkward transition home, eat snack, get ready, go period. The environment is noisy, busy, and full of bouncy children and adults speaking loudly to be heard above the din. They don't always give instructions near her or with direct eye contact or in short one step phrases, so I see my daughter looking at the other kids to see what they're doing as her method to "do the right thing." With all of this already challenging her system I watch her do physical activities that a year ago she was unable to even begin. At the most recent class she was supposed to hop on one foot from one hula hoop to another for a length of about 20 feet. She got tired at the end and missed a few or had to land with both feet, etc, but this is a child who a year ago could barely stand on one foot for 3 seconds. She is working hard at these sessions and I'm proud of her desire to do well.

I have to be careful as I watch the other children in the class. I don't know their stories. They look fairly typical, but I know the folly of that cursory exam. Still it bothers me to watch them goofing around and not really trying at all to do the various activities well. The contrast is amazing to me. Rather than being irked at the rascals that don't seem to give a rip I'm trying to focus on praising my daughter's persistence. It's her story I know from first breath to tonight's good night kiss. We're working toward a happy ending for this one.

Reclaiming the Sparks with your Spouse

Call this one more of a goal than something that I have mastered. Valentine's Day is coming. I just did a quick search for statistics on how well marriages for parents of special needs are faring. Unfortunately I couldn't find any well-documented studies. It seems there is an 80% divorce rate figure that is thrown around a lot without any reference...All I can say from personal experience is that after a long day of supporting our child through getting ready for school to getting ready for bed, perhaps with a meeting at school and some research on a new support tool thrown into the mix, not to mention the rest of my "mommy" duties. There's usually not much left to be "wifely" with. My strategies to date are small steps in the right direction to maintain at least a tenuous grasp on romance in the midst of running the race:

• Do the small stuff: My husband likes muffins for breakfast - I bake them. He also likes home made cookies. I write a note on the napkin in his lunch bag when he is working away from home.
• Occasionally make a larger effort: We are planning to sneak away for a couple of hours this weekend to watch a movie in a real theater.
• Make time to talk: Lately the best time for us to talk is when we're all in our van on a 20 minute or so road trip. We are fortunate to have a DVD player in our van which can usually keep the kids distracted while we chat. Spousal e-mails only go so far.
• Worship together: Nothing brings us closer than sitting in God's presence together.
• Work together: Probably the biggest change for us in the last year was taking a class together and learning new strategies to help our daughter. Prior to this we at times had opposite approaches for addressing our daughter's behavior. While we still have our individual ways of working with her, we are more united in our end goal and have more common vocabulary for discussing issues when they arise.

I have a lot to learn in this area...if you care to educate me, feel free to leave a comment below. (Unless you're a spam-bot which has been happening a lot lately...)

This post is part of the Moms' 30-Minute Blog Challenge.

Of Stories, Questions, and Mistrust

Some time ago I published a piece about the new statistics that show that 1 in every 110 children in the United States is on the autism spectrum. Within the week two different people suggested that we should try the Gluten Free Casein Free (GFCF) diet for our daughter. While I respect people who have made that choice for their child's treatment plan, it has never seemed to fit our particular situation. Nonetheless I decided for the purposes of writing this blog I should perhaps do more research into that approach. I am just at the beginnings of my investigations, but it seems I am looking into this just as the controversy has reached a new peak.

Late last week (Jan 28) a British medical board chastened Dr. Andrew Wakefield who initially published a study finding a link between the Measles Mumps Rubella (MMR) vaccine and the occurrence of autism. The board found a variety of ethical problems with his study. The vaccine is generally given around 18 months of age when some forms of regressive autism appear. This form of autism is particularly devastating because the child has often been completely on track developmentally - walking, talking, socializing, and then these skills diminish and the parent feels they have "lost their child" to the disorder. I cannot imagine how heart-breaking this experience must be. In our own story we can see symptoms of sensory processing problems and motor skill issues back to newborn days. It seems to be the way our child was wired from the beginning, which doesn't make the symptoms any easier to handle, but we have never known her to be any other way. People who suspect that the MMR vaccine (or others) are a cause of autism are often proponents of the GFCF diet as well as other biomedical interventions (supplements, detoxification treatments, hyperbaric oxygen, etc.) Generally they also see clear signs of intestinal distress in their children - irregular bowel movements, yeast infections, abdominal pain, internal bleeding, etc. We have seen none of these for our daughter, which is the main reason we have not pursued any special diets.

Later in the week (Feb. 2) the scientific journal, Lancet, which originally published Dr. Wakefield's study, retracted the article because of the review panel's findings. You can read the explanation for their retraction here. The bottom line is that the British review board and the Lancet are calling into question the causal link between the MMR vaccine and autism.

That will not be the end of the story. I've already seen comments on other blogs from individuals who are convinced there is a link. They see ethical problems on the other side of the issue, claiming that investors or relatives of investors in the vaccine industry are sponsoring all of the studies that seem to show that vaccines are safe. They view Dr. Wakefield as a martyr of the vaccine machine. "But wait," replies the vaccines-are-safe-crowd, "Dr. Wakefield was invested in a single Measles vaccine and his study supported the use of single vaccines instead of the triple shot, so his study is unethical in that regard, too." Then there are the lawyers for both sides who stand to profit no matter who is right...

I don't honestly know what to make of all of it, which is why I'm reading more. For us the MMR/immuno-neurological storyline doesn't seem to explain our daughter's autism. I do believe that for the vast majority of children vaccines are safe. After discussing vaccine concerns with our pediatrician we proceeded to vaccinate our twins, albeit on a slower schedule and being sure to avoid vaccinating if they were recovering from an illness. I go back to wondering if what we currently call "autism spectrum disorders" aren't really several different disorders that manifest in similar symptoms but have different root causes. There is no other way my logic can explain such different storylines from parents who in the end just want answers, and help for our kids.

Sadly when the answers come I'm not sure we'll recognize or trust them because the community seems so deeply divided over this issue. It reminds me of political or "religious" debates because neither side trusts the other sides' sources, and everyone spends more time defending their point of view than digging down to the crux of the matter. I think we need a wake up call in that regard. Remember the statistic that started this journey for me in the first place? 1 in 110. Our school systems are overwhelmed, our social services are stretched thin, parents who try to meet the gaps the schools and social supports can't cover are fraying at the edges, and the children are falling through the cracks. We can and must do better than this...for our kids.

Angels Part 1 Devoted to Worship

As a result of re-reading two Frank Peretti novels, some interesting discussion at our weekly Bible study group, and my read the Bible in two years commitment, I have been wanting to learn more about angels. Since I just finished the Fruit of the Spirit series here, and since my other studies take up my meager devotional times, I'm exploring the notion of writing about what I learn from my angel study here. I am not sure if there will always be a direct connection to special needs, but it will keep me accountable to actually do the study, and I hope it will be encouraging to you.

I am using a book called "Angels" by Douglas Connelly, A LifeGuide Bible Study. It is divided into eight studies. I don't expect to quote much of the book (it is mostly just suggested scripture passages and questions) but I don't want to pretend that the format is entirely my own idea, either.

First, some background: I believe angels are real, spiritual beings. The Bible speaks about them extensively. What is hanging me up is a mixture of what I will call "folklore" and flashes of Bible stories that I have heard from childhood on. I want to have a clear Biblical understanding of who these creatures are, what they do, and how they are different from people.

Today's passages are Isaiah 6:1-7 and Revelation 5:11-14. The Isaiah passage describes a vision that the prophet Isaiah experienced in the year of the death of King Uzziah (740 B.C, King of Israel). He suddenly finds himself in the presence of God and His angels. Isaiah calls the angels seraphs (which means burning ones) and describes them as creatures with six wings. Two wings cover their faces, two wings cover their feet, and with two they fly. As they fly they call to each other, worshipping God:

Holy, holy, holy is the LORD Almighty;
the whole earth is full of his glory.
Isaiah 6:3 (NIV)

Isaiah also describes a close encounter with one seraph. Understandably so, Isaiah becomes acutely aware of his own faults and sins and confesses aloud that he is undone because of his unclean lips. One of the seraphs flies to him with a live coal in his hand, touches Isaiah's lips with the coal and assures him, "See this has touched your lips; your guilt is taken away and your sin atoned for." (Isaiah 6:7, NIV)

In Revelation, the apostle John describes a similar scene around God's throne where millions of angels sing:

Worthy is the Lamb, who was slain,
to receive power and wealth and wisdom and strength
and honor and glory and praise!
Revelation 5:12 (NIV)

Their praise inspires every creature in heaven, on earth, and under the earth, and on the sea to respond in kind:

To him who sits on the throne and to the Lamb
be praise and honor and glory and power,
forever and ever!
Revelation 5:13 (NIV)

From these passages we can glean several truths about angels, and particularly seraphs:

• They are spiritually pure - they reside in the presence of the Holy God.
• They are actively at work worshipping God and tending the altar.
• They understand that sin requires purification and atonement.

Most importantly, we can enter into worship with them. Though we are not pure as they are, there is a way that we can be cleansed. Our sin is atoned for, and we can worship God as they do. I was particularly drawn to the simplicity of their worship. They focus on God's character - Holy, Almighty, Glorious, Worthy; and what He is due - in short, everything. This simple formula should be accessible to everyone. One of the blogs I frequent, Specialgathering, is focused on creating communities of worship for individuals with special needs. At the foot of God's throne all are equal.