Movie Review - Loving Lamposts

First, my apologies for disappearing for a week. Last week was supposed to be my "light" blogging schedule, but not quite THAT light. We had an urgent accounting project dropped on us, which basically left me thankful that our family has our own issues and not another person's. Maybe God really does give us just what we can handle.

Meanwhile, I'm resurfacing just in time to hit the review post with a documentary called Loving Lampposts - Living Autistic by Todd Drezner. The title refers to Drezner's son's obsession with lampposts. There is a park near their home with old-fashioned looking lampposts and the little boy has named four of  them and likes to visit them often to give them hugs and whisper sweet endearments. This is a charming characteristic most likely springing from his autism spectrum disorder. His father set about making this film in an effort to cut through many of the controversies surrounding autism, revealing the double meaning of the title. You can imagine the unfolding story as one family's journey, lit by each discovery as they seek to understand and love their son. The film ends up being a thumbnail sketch of the history of this challenging disorder, interspersed with some of the key players and their influence on society's awareness and understanding of autism.

Thirty years ago only 1 in 2,500 children was diagnosed as autistic, today as many as 1 in 110 bear that diagnosis, worldwide. Is this an epidemic? Drezner interviews parents of adult individuals with autism who grew up in the 1950s, back in the day when children with autism were usually diagnosed with schizophrenia. He talks to adults with autism who grew up in the era when autism was equated with being non-verbal, so verbal children with other symptoms of autism were labeled psychotic or neurotic. He talks to medical doctors who take the view that autism is a medical condition related to environmental toxins, and to parents who have used non-traditional biomedical treatments (like chelation, hyperbaric oxygen, and pro-biotics) to "recover" their children. The vaccine debate is aired. The secretin scandal exposed. The question of "functional grades" is considered. I think the only controversy not discussed is whether a person "is autistic" or "has autism."

Though respectful and even handed, the film makes it clear that Drezner does not fall into the camp of people who consider autism to be a disease. Obviously there is some biophysical/biochemical/neurological difference in the brain affected by autism, but Drezner argues that it should not be placed in the same category as cancer, for example, or diabetes, where a physical problem must be made right in order for a person to live and thrive. He comes down squarely against the notion that vaccines have any causal relationship to autism. He is empathetic toward parents who seek out alternative therapies as a means of "doing something" for their children, but in the end his own view that autism is a disorder that must be accepted and understood as a "different way of viewing the world" rings out.

I have previously published my own research into the "recovery movement" and still want to be clear that our personal story does not line up with the medical issues that some other parents of children with autism face. Our daughter has never experienced seizures or severe gastro-intestinal distress (unless she has the flu). She has no known food sensitivities and seems to have been on a slower developmental trajectory since birth or at least very early newborn days. Still it is hard to discount another parent's story, and I still wonder if we all aren't describing two (or even more) disorders with similar symptoms but different underlying causes. The old analogy of blind men describing various pieces of an elephant to each other and arguing about what an elephant is like comes to mind. In this case perhaps each blind man thinks they're describing the same animal, but perhaps instead one is feeling a kangaroo while another is feeling a wallaby. Some pieces are the same, but in the end they are a different beast.

My favorite portions of Loving Lampposts are when we see and hear from various adults with autism. There is an older man who makes beautiful pottery to support himself in an apartment where various individuals assist him in daily tasks and routines. One woman particularly affected me because she prefers to speak through her computer, though at one point in the film she does speak with difficulty. Her computer lets her intellect shine through as she composes quite cogent responses to fairly philosophical questions. Perhaps my favorite is the woman who decided to keep a pet refrigerator. I feel I have a lot to learn from these adults who are able to express what they have learned about themselves and about autism along the way. I know it helps me understand better how my daughter sees the world around her.

This is a compelling film. I did not expect my husband to view it with me, but after standing through several promos of other films marketed by the same studio he eventually sat and watched the entire film. It opened some lines of discussion for us that we had never voiced before. I would recommend that anyone who wants to understand more of the history and controversy swirling around this increasingly common disorder should watch this movie, and soon. Loving Lampposts has been making the circuits of independent film festivals and will be released on DVD on March 29, 2011, just in time for National Autism Awareness Month (April).

Disclaimer: Cinema Libre Studio sent me a promotional copy of Loving Lampposts for review. I received no other compensation, except opened eyes and a warmed heart.

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.

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.

Acoustic for Autism

I wanted to let you all know about this CD (also available for digital download from iTunes or Amazon) put together to benefit autism research, and awareness. All (100%) of the net profit from this project will go to support autism charities. The two friends who produced the album both have autistic children and wanted to make a difference. Twelve different artists have contributed acoustic music (some previously unreleased) to the project, all following the theme of hope and healing. You can read a review by Steve Morse in the Boston Globe here.

This is a pretty straightforward action plan...If you think you might like the music, buy the CD. Tell others about it and encourage them to buy it, too.

It just shows how people with big hearts can use their talents to work together to make progress against an increasingly challenging problem.

Book Review - Let Me Hear Your Voice

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

Other book reviews:
A Regular Guy
Handle With Care

Sunday Digest 1

On Sundays I'm going to be posting a digest of links that I've come across that seem important to the task of parenting special needs children, some will be from a faith perspective and some will simply be practical or "in the news" types of posts...this is of course by no means comprehensive. For time purposes alone I'll probably limit it to five cool links (do you really have time to read more than that?). Also I should note that these are not extensively vetted - as with anything you find on the internet read and enfold into your world view with caution! :-)

Friendship Circle – pairing special needs children with teenage volunteers – supports special needs children with companionship, supports parents with respite. I am always looking for groups that encourage typical and special needs friendships.

Financial planning for parents of special needs children. Something I've thought about but not done much about...put that on the long to do list!

Following up on a conversation I had with a friend of mine...two blog posts with alternate points of view:
Parents venting at lack of progress in finding a cause, and or a cure for autism.
and:
A parent with autism with his own view of the cause(s) of autism.

Last but not least, if you're feeling the least bit worn down by your role as a special needs mom, this piece written especially for mother’s day will melt your heart.


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