All the News That’s Fit to Know

Charlie on yet another cold brisk walk Tuesday morning I was feeling more grateful than usual to have my job (which I'm generally ultra-grateful to have at all, as a (full-time) working mother of a child on the autism spectrum, and because it's become woefully hard to get a position as a humanities college professor, not that you follow the harsh realities of the academic job market). Charlie, exhausted from the events of Monday aka transition-back-to-school day not to mention the sore on his mouth, had fallen asleep by 6.45pm. Jim and I were glad that he was getting a much-needed rest after a tough day but also all too aware that such an early bedtime meant Charlie would most likely wake up very early Tuesday morning.

Make that 3am on Tuesday morning.

Charlie came out of his room fully dressed and peppy. We used to ply him with more melatonin and try to get him to go back to sleep. We've both learned (such is the harshness of parental experience) that once Charlie is up, he's up and you can't persuade his body clock to do auto-reset.

"Fries, fries," Charlie said and heated up a plate of tater tots. I had made sure to go to bed before midnight (all-nighters are meant for college students; mothers who have to drive their always potentially anxious child to school and elsewhere, not to mention do all the things that mothers do, need to be somewhat semi-alert). I kept debating if I should make coffee, calculating that coffee made at 3.15am would still be warm at 10am, according to the tag on the new travel cup my mom send me (thanks, mom!). I decided to wait as maybe, maybe Charlie might go back to sleep for a bit and we were certainly hoping that he would, or be snoozing by 10am at school.

We watched too much YouTube (I know it's sounded like we watch a lot of YouTube, but it was 3.45am and we have neither a TV nor a DVD or VCR). I had Charlie write more about Gong Gong coming next month. I dragged out an old puzzle of the 50 states and part of Canada. It's actually a 150-piece puzzle and the pieces aren't cut out to resemble the 50 states. Two summers ago at the beach Charlie did the whole puzzle with some help. Once a puzzle fiend—with online puzzles too—Charlie has not been interested in doing any in awhile. At 4.30am, I started picking through the pieces and found parts of Canada, Maine, North Dakota, Minnesota, California, the Gulf of Mexico, New York. Charlie started trying out different pieces together based on their shapes, just as he used to. We were just starting to piece together the upper Midwest and Montana when he told me "all done" and retreated to the couch. He sat, green worry beads in hand, and grew quieter and, at around 5.30am, was slouched over, asleep.

Charlie didn't wake up till just around 8am. At which moment—just as I was thinking I could gently urge him into the white car—Charlie told us "bedtime." 

And while we would once have been insistent about Charlie getting to school on time and all that, Jim and I said "sure fine" and, feeling really relieved that neither of us had to worry about teaching an early morning class, I called the school to say that Charlie would be late. 

As it turned out, Charlie was ready to go in about 20 minutes. He waited, alert and serious, for an aide to accompany him to his classroom. The aide talked to me about Charlie's mouth infection as very likely the reason for his tough Monday morning. He even wondered if getting some salt on his mouth had led to Charlie becoming upset in the cafeteria. 

Jim and I had both had plans to go work in our offices but grogginess prevailed and we settled to working (by this point, with lotsa coffee for me, Jim doesn't drink it). While working through a speech of the Nurse in Phaedra, I distracted myself with the latest news about autism: 

  • a report that there's "no evidence" that special diets "help autistic behavior"; Dr. Timothy Buie of Harvard Medical School notes that "published studies suggest only around 30 percent to 50 percent of parents of children with autism try restrictive diets" and that "peer pressure to try a diet was intense" (ABC News)
  • a study of Polish children that found no link between the MMR vaccine and autism (Reuters)
  • a report that UC Davis researchers, in looking for environmental causes for autism, found that more children were diagnosed with autism in places near "regional developmental services centers in areas with highly educated parents, primarily Caucasians, with high incomes" (LA Times blog)

So many familiar topics that we've heard over the years since Charlie was diagnosed in July of 1999.

  • The efficacy of the gluten-free casein-diet and the pressures parents feel to do something because someone else is doing it with "great results" and how can you deprive your child of doing what you can.
  • The pressure parents feel to consider that vaccines might have "contributed" to a child "becoming" autistic; parents being hounded by the pro-vaccine safety/anti-vaccine proponents when they say that they don't believe, based on the scientific evidence, that there is a link between vaccines and autism. 
  • The continuing hunt to find some external, environmental "cause" for autism, even as so many children and their families are strung out from lack of services, supports, school and, what can I say, sleep (such that pronouncements by the likes of Arianna Huffington and the editor of Glamour magazine that women should stand up for their right to get enough sleep! yeh right, yeh right, yeh right).

I thought about, when we put Charlie on "the diet" in June of 1999, it just made us–me, certainly—feel so much better; feel that, by mixing up bean and tapioca and rice flour and xantham gum, I was doing something and Charlie might, would, had to benefit. What if there was a simple answer to what caused Charlie to be as he was, as he is, and a correspondingly straightforward way to help our struggling boy? Because, believe you me, if I knew we'd have to go through everything we have (even just that Saturday at the doctors' office and the ER), I would not have thought I could endure it all and especially if I heard that some other parent, who seemed to be the only one who knew what it was to walk in our shoes, had had those "great results."

But a 3am wake-up is not a catastrophe. 

It makes one tired. 

It's manageable.

And holes in the walls can be fixed and, Jim being home on Tuesday morning, he did just that.

And a child can have a gosh-awful Monday back to school and then a pleasant next day at school, at home, in the neighborhood, at the grocery store.

And, as another mother of an autistic son writes, it's not about the "hypothetical cure question," but the bigger, far more complicated, very real and not at all hypothetical questions about how to care for our children, in sickness and in health; on days that start at 3aml on days when I for one am just grateful that my son is my son, here with us, and teaching me day after day and at any hour of night or day that the news that doesn't make the headlines—Charlie had a good day, we made it through another day—is the only thing you need to know.

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Comments
17 Responses to “All the News That’s Fit to Know”
  1. saralynneee@earthlink.net says:

    You are an inspiration. Very beautifully put. Thank you.

  2. Jen says:

    You’re brave to stay up so late…I’m usually asleep by about 8:30 pm these days 🙂 At least in the last few mornings one of my daughters has been wanting to have in-depth conversations instead of just whining (we’re going through one of those phases again!)

  3. farmwifetwo says:

    But I don’t like being accused of not knowing about my child. That news article, if you read it in full about diets says “more research needs to be done”. LB/RB like to cut and paste things to fit their agenda.
    Also, I find the attitude of “parents don’t know…” that the ND crowd has as being very wrong… again posting on LB/RB.. That would mean you haven’t a clue about Charlie or what’s bothering him. That my son’s diahhrea was all in my head yet vanished with the removal of dairy. That having to go not to the local children’s hospital but the next one last spring and FINALLY being dx’d with Crone’s – a friend’s teenager who looks like a 9yr old after yrs of malnutrition – was all in their head. My dh’s cousin’s boy hemmoraging in his Gr 1 classroom (he’s in Gr 6 now) and having to be airlifted to the local children’s hospital after years of stomach issues that were “all in his head”, when his intestine burst – 3/4 closed with a skin flap from birth – in the middle of class.
    To not allow parents a “voice” when something is wrong for their children just to make the ND crowd feel better about their anti-diet, anti-vaccine rants valid… Means that you’d better have “proof” when you tell you Dr your kid has a headache, makes ASD dx’s invalid since it’s all parental proof at the appts…. Personally I prefer the answer that House (TV show) told his interns “That child has screamed for 10yrs and they never brought him to a hospital. Something is wrong.. Find out what it is”.
    Why are vaccines not followed up on?? Why are not pregnancies and their interventions/issues (high bp, premies etc) not followed up on?? There’s been 2 articles – I have them both in my favs – about the abuse of ultrasounds during pregnancy… They claim they are safe… but births are not followed up.. just labelled “live”. They have no idea about environmental factors at all.
    Now this Mom who thinks little boy deserves more than to be dependant than independant, needs to get him ready for his bus. This Mom who some would say is a horrible Mom for having that view, actually got her Modified IEP yesterday (major hissy and major loss of sleep)… Wanting more, doesn’t mean I hate him, blame him, or any other negative that’s been tossed at me.
    Mean’s, he deserves independance and a voice of his own.

  4. mumkeepingsane says:

    I’m glad Charlie had a better day. Lack of sleep was always difficult for me.

  5. Regina says:

    I think what the Pediatrics papers (there were 2), said that children with ASDs are as subject to gastrointestinal issues, such as diarrhea, constipation, lactose intolerance, IBS, etc. as those in the general population, that the evidence at this time does not point to an “autistic gastroenteritis” special to autism, that the evidence at this time does not point to a special effect of of such as the GF/CF diet on the symptoms of autism and can’t be recommended as an evidence-based treatment at the current time, but I believe that the statements were related to the current state of evidence and there was some indication that more research is needed to answer questions about subsets and to determine what might constitute “evidence-based” recommendation. One useful suggestion is that problem behavior can be related to GI pain and that evaluation should not assume that such problem behavior is just part of ASD. FWIW, that is a recommendation common to FBAs as well – eliminate that physical illness is at the root of a change of behavior or problem behavior before assuming an environmental reason.
    Both papers, both the consensus report and the recommendations for evaluation and treatment, were available in open access full text the other day over at the Pediatrics journal website. My description is a quick paraphrase. I would recommend that anyone who wants to see the actual statements and recommendations obtain the papers.
    It should be noted that a well-designed and controlled fairly large-n study has been conducted for some time at the University of Rochester. Geraldine Dawson had some reason to state in the press that this study will have some significance in answering some questions related at least to the GF/CF.

  6. autismvox says:

    I think we ought to be wary of generalizing that what someone comments on Left Brain/Right Brain or elsewhere is emblematic of what autistic individuals and autistic adults in general. In numerous communications with autistic adults, I’ve rather heard them emphasize that they are speaking from their own experience and do not presume, as might be assumed, to speak for Charlie.

  7. Regina says:

    Just a few codas [smile], which constitute comment, not recommendation or advice.
    V. Mark Durand’s book “Sleep Better” has been very useful to us in understanding sleep, sleep cycles, common sleep problems and giving us strategies to address problems when they occur – both our daughters’ and our own. (I am currently in an active mode of getting everyone into a more typical sleep cycle because we got shifted during the holidays and are not feeling all-that-hot back on the regular clock). Also that Huffington Post story resonated a bit here, so I’m trying to carve out more sleep time for myself rather than working through fatigue, which was having diminishing returns in the past couple of months.
    FWIW, the Pediatrics papers were interesting to us because our daughter has not exhibited any significant GI problems to date requiring a special restricted diet,except for a lactose intolerance which I also have, and my mother before me. That’s anecdote. YMMV.
    Sorry about going on so long! Happy new year!

  8. María Luján says:

    The BG media article says
    Quote:
    Panel finds no digestion problem specific to autism
    An advisory panel says there is no rigorous evidence that digestive problems are more common in children with autism compared with other children or that special diets work, contrary to claims by celebrities and vaccine opponents.
    BUT the article
    In Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in
    Individuals With ASDs: A Consensus Report Timothy Buie et al.
    says
    Quote:
    Statement 3
    The prevalence of gastrointestinal abnormalities in individuals with ASDs is incompletely understood…
    Despite the limitations in type and quality of available evidence, the preponderance of data
    were consistent with the likelihood of a high prevalence of gastrointestinal symptoms and disorders associated with ASDs…
    And it says
    “Anecdotal reports that restricted diets
    may ameliorate symptoms of ASDs in
    some children have not been supported
    or refuted in the scientific literature,
    but these data do not address
    the possibility that there exists a subgroup
    of individuals who may respond
    to such diets. Professional supervision
    of restricted diets is recommended to
    prevent nutritional inadequacies.”

  9. María Luján says:

    http://www.autism-society.org/site/DocServer/Pages_32-34EH.pdf?docID=10446
    “Buie suggests that adopting a different perspective on autism would enhance future research initiatives. The new view would be based on these principles:
    • medical issues, including GI disorders, exacerbate autistic behaviors
    • recognition and treatment of underlying medical conditions will improve functional outcomes
    • raising awareness of underlying medical issues among medical providers will improve quality of life”

  10. autismvox says:

    I should note that I’m particularly interested in what Dr Buie noted about the _pressure_ (about trying diets) that parents feel from others, a pressure that can interfere and affect their understanding of the issues.

  11. Regina says:

    I don’t think the quote or the article are inconsistent – statements of lack of “rigorous” evidence (which has some specific meaning in the evidence-based hierarchy), and limitations in “type and quality of available evidence” and “not supported or refuted in the scientific evidence” are somewhat equivalent. The goal is to seek evidence-based recommendation; in the relative absence, consensus report based on expert review of the current evidence is filling in.
    Statements of potential subgroups is, however, different than a de facto assumption that every child, even in the face of a “likelihood” of a high prevalence of GI symptoms (which can encompass a variety of manifestations and sources), requires the same restricted diet or treatment as a function of an ASD diagnosis.

  12. María Luján says:

    Pressure is equally suffered from different groups with different agendas.

  13. María Luján says:

    Regina
    It is different to refute that to say we do not know.
    The consensus report are very clear about.

  14. autismvox says:

    I think the _pressure_ felt by parents of children with disabilities in general and autism in particular is heightened due to notions like that of autism being caused by “refrigerator mothers”/bad parents.
    Again and again with Charlie, it’s been his struggle to _communicate_ whatever stomachaches etc. that he might be experiencing, that seem to have led to behaviors.
    I read _Sleep Better_ awhile ago; time to take a look at it again—-

  15. ange says:

    Kristina, I hear you on the sleep, though mine is more broken rather than just UP. Much love to you, Jim, and Charlie.
    And BTW I like what I heard on an old Bones episode the other day: “All elephants are gray, but not all gray is an elephant.” Anecdote: My youngest son had an egg and milk allergy and removing them helped his GI issues and failure to thrive. Whether or not he has autism is irrelevant except in the case that his reaction to his allergies may have been more “behavioral” because of his neurological differences. No different than how my oldest is reacting to the changes in his bodily differently… he’s not having “autism puberty” but is just reacting differently to something that happens (and messes with hormones) to all boys because he’s having difficulty processing it.

  16. Regina says:

    (Man, so much for the resolution to back away from the computer (smile)).
    Kristina, speaking of “All the News That’s Fit to Know”, did you see the tip of the hat to you, Charlie and blog over at the Easterseals blog?
    The great outdoors — inspired by Charlie
    Posted by Patricia Wright on January 5th, 2010
    http://autismblog.easterseals.com/the-great-outdoors-inspired-by-charlie/

  17. Matt goes to bed at that time each night but up around 6ish. One day over the weekend I woke up at 6:45 and he was still asleep.
    Earlier tonight I noticed Matt mouthing one, two, three, four, five, six when he was banging on the closet – it was so impressive to see, had Nick look to as my backup witness to this, never knew Matt could count, but makes sense. This vacation is way too long, back to school on Monday.

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