Parental Concerns (#470)

Charlie is currently in a class of six boys—-not that he has ever been in a large classroom. One previous classroom had seven students (six boys (one set of twins), one girl) and his much missed former private school had a total of seven students (again, six boys (and, again, one set of twins) and one girl). This is to say, there have never been more than five other families represented in Charlie’s classrooms—five sets of parents to get to know and interact with.
Keed_3In truth, I have found it hard to get to know the other parents whose children are in Charlie’s classroom as much as I would like. There are the simple realities of us being, yes, autism parents, with children who need need us and babysitters hard to come by. For several months a few years ago, I did get to know some of the mothers a bit more because two of them (and one in particular) and I waited outside the door to pick up our kids every day.

Now Charlie takes the bus, and likes to do it (and spares me a hair-raising trip to meet him at the end of the school day outside his school building). I met all of the mothers at Parents Night and today at an Open House. There has been some exchange of email; the one parents group I went to a few weeks ago was composed mosty of preschool-aged children’s parents.

Even if we parents, and especially the parents whose children are the same age as Charlie and in his classroom, cannot physically meet, I think it important that we stick together. We might differ about what therapies and treatments, etc., we think best for our children or about what causes autism—but at the end of the day, we are all the parents of autistic children. We share experiences, tough moments, sighs; we share something deep.

It was very good to see Charlie in his classroom, cheery and attentive to his teachers—-if only there had not been a plate stacked high with brownies, brought in by some other parent.

Charlie has celiac disease and has been on the gluten-free casein-free diet for over seven years. After he got a bite of pound cake last week, his teachers noted that he became super-hyper-silly-giggly. Today the teachers were watching him as carefully as ever but with so many extra people in the room, and the students inclined to be less focused with the disruption in their schedule, it was discovered that Charlie can be a very fast runner when he wants to.

I sighed. I had not known that there would be so many “treats” and I guess I may be considered mean ol’ special diet have-some-fruit! mom. Charlie has had obsession trouble with “cake” in the past (resulting in us foregoing the birthday cake for his ninth, very happy, birthday). I did not want to make food allergies the main topic and did my best to spring when Charlie neared the brownie platter (which an instructor finally stashed in the microwave, though Charlie glimpsed this, we suspect). Charlie had a fine rest of the day—ABA with a new therapist-in-training, watching me cook him his basic dinner of rice and stir-fry, a walk to the train, puzzles. He did not go to bed until 10pm and rolled around so much that all the covers were yanked askew, all while he hummed and vocalized and chortled. He fell asleep sometime before 11pm.

I have been thinking all evening: I do not want to make Charlie’s dietary needs an out of proportion concern. Charlie can learn not to snitch wheat and chocolate rich brownies; we have high expectations for this boy. The other kids ought to have their treats, but Charlie always seems to respond to food without any filter, and we wish to help him do his best.

Because this business about brownies highlighted for me how we parents—sadly—can get in each other’s way. How we need each other, how talking to other parents gives me support that helps me through the days. Why then is it so hard for parents truly to share? To spell out the services they receive, the specialists (with the infinitely long waiting lists) they see, the special programs their child might have but another child does not? And if one child (say my child) is not included in some special new program because he seems to lack certain skills, that is one thing—-but for those of us whose children are the ones with “behavior problems” (tantrums, etc.), less language, fewer skills, it is an interesting feeling to find one’s child excluded from something for other autistic children because he is not “high-functioning” (a term I dislike) enough to benefit as much as the other autistic children. It would rather seem that the “lower-functioning” (a term I equally dislike) child ought all the more to be included, or that he ought to be receiving the sorts of services that can help him to be at the same level as his classmates.

I understand why a parent might be leery that a child with no behavior problems was in the same room with my lovely son who has a history of behavior problems (all of which have been greatly lessened in his regular classroom). But in Autismland, the truth is, never underestimate the potential of any kid.

And I’m a very concerned parent when I sense that anything might not be fostering Charlie to reach his full potential.

7 Responses to “Parental Concerns (#470)”
  1. Kathy says:

    I too dislike the hfa lfa terms Kristina, as I believe they are misleading.
    As you know it is very hard to gauge the IQ of autistic kids.

    I don’t believe for one minute the statistics being bandied about, that 70% of autistic kids have a low IQ..

    Having read your posts now for about 3 months I certainly do not believe that Charlie has a low IQ.
    Nor do I believe that he is (for want of a better term ) “low functioning”.
    The potential for autistic kids is huge provided they receive appropriate interventional education and therapies suited to their needs.
    Things will only get better for Charlie…

    Gosh I hope my little guy will end up swimming and riding as good as Charlie does one day!

  2. Lisa/Jedi says:

    You’ve brought up issues that i struggle with myself, Kristina. How to network with other parents of autistic kids is a toughie. We don’t all have the same attitudes about our kids & their effect on our lives (sigh). At B’s school the autism parent we’re closest to is the mom of B’s fave kid-sitter who just started college. She has been a source of wisdom & strength for us since B was diagnosed (& she’s now the director of B’s school! :). Of the other parents, some are so caught-up in grief, denial, or “battle” mode that it’s not easy to find common ground. Sigh. One parent I know bemoans her kid’s lack of services but can’t bring herself to get a second opinion- the first neurologist they saw would not be pinned-down as to her son’s diagnosis, although he admitted that her son has special needs. She has little support from her family for pursuing a diagnosis for her kid, so spends her energy going head-to-head with him over his differences. Big sigh. The parents who seem to be doing the best job of accepting & helping their child are also very busy & we only see them in passing. We have close friends, parents of B’s best buddy, who are in almost complete denial of their son’s special needs, so he’s getting no support except coaching from them in how to make-up for his differences. It makes me very sad… Because, you’re right. We need to support each other as much as possible.

    My heart went out to you over the food issue too. You are not a mean, fruit-offering mom! We’ve been in similar situations with B’s weight problem (due to one of his medicines) & there are loads of well-meaning people who unwittingly strew the ground with landmines for B. Birthday parties are the pits, since B is somewhat obsessed with fatty foods, which make him vomit when he eats too much. B’s been know to speak of these parties as “that’s the one where I threw-up afterward…” & that’s not the most wonderful of childhood memories. I wish I could figure-out how keeping your child safe & healthy becomes overly-controlling in some peoples’ minds. B’s best buddy goes into anaphylactic shock from peanuts, so I get really steamed when I hear parents complaining about peanut butter being banned from schoolrooms. These folks need to walk a mile or two in our shoes, I guess…

  3. Eileen says:

    I think that our little (ever growing) blogging community is the exception. I have encountered similar situations and circumstances with parents from Roo’s class, Roo being the only one of eight boys in his class on a restricted diet. I think we (our blogsphere group) are different because we are all seeking out the support of other parents. We celebrate together no matter how big or small the gains our beautiful kids make. We would never exclude. We have had it out on how we all feel about certain terms, like HF. Maybe we are a lot more “high functioning”, when it comes to knowing how best to live in Autismland, how best to support our friends and fellow parents.

  4. Kari says:

    The food issue is tricky. There are many peanut-allergic kids in my younger (non-ASD) son’s class, and there were some in my PDD-NOS son’s former class (he is currently out of school.)

    Peanut allergies are life-threatening.

    But my decision for my son to be on the Feingold Diet is one of behavior, language, and quality of life rather than anaphylactic shock! So my quiet explanations of why he isn’t eating the same treat as everyone else when parents ask, or talk with the teacher about not allowing him to eat anything not packed in his lunch result in eye rolling and a feeling that I am being overprotective.

    Especially given the many people who don’t believe in diet influencing behavior, I seem like I am trying to distinguish my son in yet another “special” way. But, those nonbelievers don’t realize what a difference the diet makes for us!

  5. enna id says:

    Hi, Charlie is awesome. What an amazing swimmer! He eats sushi! He can do puzzles that would take me a while to do!:)He PRACTICES the piano! He dresses himself. He rides his bike! He is musically inclined! He is happy! He is now sleeping through the night pretty well. He does hours of ABA. He is now talking more and more and having less tantrums. Unfortunatley, there will always be brownie days. Hang in there!

  6. Penny says:

    Our neighborhood public elementary school has a no-edibles rule that works way better than worrying about individual diets, religions, tolerances, etc. Parents can’t send in edible treats–birthdays can be celebrated with non-edibles like stickers, pencils etc. Teachers can’t give edible treats–so, no “junk-food = reward” messages reinforced, either. Kids eat what they bring in their own lunches, period. No weekly sugar bombs for birthdays, no worrying over which kids can eat what. It’s nice.

    It gets harder to meet other parents as our kids get older, I think. Luckily we hooked up with another family when our boys were classmates turning three. The dads work in the same industry; us moms both had second children, daughters, in 2000–so the girls have each other, too. It’s nice symmetry. Maybe there should be a parent matching service in kindergarten, to ensure more such connections. 😉

  7. A no-edibles policy sounds good to me—-that would smplify matters! And a parent matching service, hmmmmm…. Eileen, I think you are right—the level of support I’ve gotten from the online autism blogging community ever amazes me—and means worlds to me.

    Thanks to everyone for all your cheers and understanding—-I hate to make a brouhaha about brownies but then Charlie got off to a bit of a rough start. I suspect he was brownie-hunting…..

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