A Once and Former Warrior Mom
Published February 03, 2009 @ 12:15AM PT
There was a time when I equated advocacy with warrior-momness. I made sure it was written into Charlie's IEP that he was on a special diet free of this that and the other thing, and was at pains to distinguish "food intolerance" from "food allergy."
I had heard about the gluten-free casein-free diet as a "dietary intervention" for autism in June of 1999, just around the time Charlie was being diagnosed. I stopped at the health food store on the way home from my office and Charlie, and our household, was purged of anything wheat or dairy shortly thereafter. I bought this book and this book and this book (and spoke to both authors). Until about a year ago, I was the Food Police when bagels and pizza and cupcakes came anywhere near Charlie's orbit. Gradually we reintroduced wheat for Charlie, primarily because not letting him eat it isolated him from his classmates, when their mothers brought in treats and when we were at gatherings with families and friends. As of last summer, Charlie was no longer on "the diet."
And a funny thing happened that a friend and I like to call "forbidden fruit syndrome." After ten years on "the diet," Charlie has still preferred to eat the same as he did, with the occasional bite of baguette and brownie. He still prefers Asian food (sushi........) and his old staple, rice with some stir-fried protein and vegetables. And I may as well put in a permanent order to this Louisiana rice mill, as their "green crackers" (because the box, not the crackers, is green) are Charlie's ultimate comfort food. On the weekends when Jim and I order a pizza, Charlie's been saying "no thank you."
Once my efforts (Jim has always been more easy-going, to his endless credit) to control what went into Charlie extended to every aspect of his schooling, home therapy sessions, therapy sessions at a clinic, all the time.
I was mad at the world for what it'd given Charlie and I thought (unconsciously) that, if I could control everything around Charlie, he'd be all right. I was mad at the world when people stared or sentmean looks our way. I wished for a magic wand (or at least, a magic treatment), to make it all right. Winding myself into warrior-mom-mode, I felt I was doing all I could for Charlie.
I'm not so sure about that anymore. For Jim and me, doing the right thing by Charlie increasingly involves heavy-duty teamwork, involves dialoguing (over debating) about what Charlie needs and how he goes about it with an ever-growing cast of teachers, aides, therapists, the occasional administrator, the case manager, former therapists whose email addresses you can be sure I've saved, parents, self-advocates, my colleagues at work, my students studying to be teachers.I used to think I was the solitary mom on a mission. Now I work my way through every day, remind myself to listen and learn and play my part in thinking ahead to the future for Charlie and his three classmates and all the kids like him and them.
To that end, I worked my way carefully through the New Jersey Adults with Autism Task Force (NJAATF) survey. As noted in an article about the numerous autism bills passed in New Jersey in the past year or so, the NJAATF's report to the governor is due in June. I've heard too many stories of 20-somethings sitting at home because, after years of solid autism education, but no jobs, no housing, no nothing was there for them when they turned 21.
I understand why so much attention is focused on early intervention and getting treatments and therapies for younger children on the spectrum. But autism is lifelong and I think we need to refocus advocacy and educational efforts with this in mind. For one thing---something that seems to get forgotten----kids on the spectrum grow up into adolescents on the spectrum into adults on the spectrum.
I mean, at the rate Charlie is going---watching me so carefully as I made him rice and stir-fry yesterday evening---I'm thinking it won't be long before he learns to use the rice cooker. And then from there (if you can trust the New York Times) the possibilities are endless.
Just like those of a certain boy I know.
(Yes, Monday was good, with lots of good talking.)
Photo by quinn.anya.
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Comments (28)
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Author
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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End the Perpetuation of Pity
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End the Perpetuation of Pity
The warrior label sounds productive and meaningful. But tilting at windmills and running on a treadmill ends up doing nothing but expending calories.
Posted by Ken Wickiser on 02/03/2009 @ 03:57AM PT
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Hi Kristina -
You are still a warrior mom; you've just chosen a different set of challenges than the Jenny crew. I may not agree with you on some prioritizations, but you are every bit as dedicated as any of the biomed mothers I know, just differently inclined as to where to focus your energy. Given that, you might consider how wide a brush you are painting with when you choose to describe how you used to be like other people, but aren't any longer.
Great news re: Lots of good talking.
- pD
Posted by passionless Drone on 02/03/2009 @ 05:55AM PT
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thank you, pD, and thank you for your patience with me.
Posted by Kristina Chew on 02/03/2009 @ 03:33PM PT
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A thought on your observation that this is a lifelong condition: IEP's, I've noted, are generally focused on shoring up a deficit but they're not very strong on expanding a strength. Autism is one aspect of my children, but it isn't the totality of their identity and it doesn't mean that they can't "find their joy" which would lead them to fulfilling careers.
The problem with autism is that it is looked at as a problem.
Instead of trying to shoehorn these children into measures that determine how well they can fit into a certain way of disseminating information, I think it would be far more productive if the dissemination of the information were tailored to meet their specific learning styles. Yeah - this is a little out of the box for a lot of administrators to deal with, but I believe this approach makes for more productive students and in the end more productive adults.
Put it another way: no one freaks out if a child does not have a natural ear for music. No one would say that a child who struggles with arithmetic tables couldn't follow their dream of becoming President. I'm not equating the challenges of autism to either of these things, but what I'm saying is that all children have inherent strengths and weaknesses, and we should take those on as they are - but the presence of inherent weaknesses does not limit the ability of the child to grow into a fulfilled adult.
Off my soapbox ;-)
Posted by Jen Quirk on 02/03/2009 @ 07:11AM PT
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Our most recent IEP meeting could be said to be primarily about "deficits" --- the conversation started there and throughout there was mention, more and more, of what can do, what his strengths are, what his potential is. It's such a balance to figure out how to talk about these. I feel that if I'm not honest enough about "deficits" or challenges, we don't seem fully to address them----and yet the sum of things for Charlie is his strengths, his abilities, his perseverance and patience to try and do all that's asked of him. Still seeking to find the balance.
thanks for soapboxing!
Posted by Kristina Chew on 02/03/2009 @ 06:59PM PT
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lol - you're welcome. Still trying to find that balance myself.
Sending you love and solidarity thru the tubes :-)
Posted by Jen Quirk on 02/04/2009 @ 09:47AM PT
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I wonder what it is. If it's the people here or the way I carry myself or if it is just that I'm totally clueless to it because I'm focusing on G when he's upset, but I don't recall really getting one of those mean looks. Early on I had feelings of guilt about his meltdowns or hyper-activity being disruptive, I imagined people upset. But once I got past that? Nothing really. Of course he's not to the HUGE size yet like Charlie. :) He's small even for his age, so he's going to get a bit of a free pass that way. I remember my oldest was enromous for his age when he was younger. Over 3' tall well before his 2nd birthday. Coupled with his delays he would get some questioning looks at times.
Maybe this belongs more in your previous posts about going out but one thing that struck me over at WrongPlanet (where I occasionally hang out to feel so very typ ;) ) is many adults on the spectrum feel invisible. Like people look straight through them and not even on purpose, though sometimes I bet it is.
P.S. Rice cookers are the thing! So, so easy and versitile. After I had rice at a friends place and I found out the husband cooked it (he's THAT stereo-type :) ) With a little more skill quite versatile too like that link you gave mentions. It isn't just rice either. It'd do pretty much any small seed or grain like quinoa, whole buckwheat, etc.
Posted by Dwight F on 02/03/2009 @ 08:40AM PT
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We're all pretty tall too (*coughs* at least my brothers are). My parents used to have to bring passports everywhere to prove they were still under 12 (or whatever age), to get child discounts, otherwise people wouldn't believe they were that young. I passed for 12 two years longer. I wasn't really very tall, just below average most of the time, but I just... didn't stop growing when I should have. Grew bits and bits way up until I was 22. Now I am taller than average, just a little.
I used to be invisible when I was younger, now I wish I still was. I'm the person people love to come sit next to in trains and such, instead of other, apparently more 'unsafe' seeming people. I don't get it.... I stim, have 'unusual' body posture, etc... Maybe people realise I'm less likely to bother them or try and strike up a conversation, and they appreciate that. I still dislike anyone coming near me though. Sight, sound, but most of all, smell. I wish I couldn't smell so well...
Posted by Norah vd Stel on 02/03/2009 @ 08:58AM PT
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Norah, me, too. I can't stand the way people smell.
We've got a tall one on our hands, too. He's seven...just got him size 6 (young adult size 6, not kids') shoes and size 10 jeans. He's 4.5 feet tall and weighs in at 74 pounds. He's really enormous for a seven year old. It has nothing to do with being autistic, unless you just toss "genetics" in as the common explanation: he's got very tall people on his dad's (German and Swedish) side of the family. On mom's side? Lots of little Irish and French Hugenot types. Average height at best. The only thing I'm a warrior about is...all of my kids. It's not about the autism. It's about being their mother. Period.
Posted by Emily Willingham on 02/03/2009 @ 09:21AM PT
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Charlie may have been just a bit smaller at his age (size 8) but all Irish and Chinese genes.
Posted by Kristina Chew on 02/03/2009 @ 07:22PM PT
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Although we still maintain 'the diet' to large extent and make it known at school not to give him certain foods, I too have backed off quite a lot. We are at a place where an infraction doesn't cause huge turmoil, basically he doesn't feel good. He is old enough (7) and smart enough to start policing himself on these things somewhat. I can't be with him everywhere to be the 'food police', and my kids like the attention they get (I think) from turning down treats and if I were to forbid it instead it would steal their thunder.
I feel very fortunate about the teacher he has this year. I told her about the food concerns, and she announced to the class' parents that there were to be no 'birthday treats' brought to her class. Instead, she was requesting "birthday books" - a special book could be brought to class and even read by the parent to the class. The parents could give it as a gift to the class if they so chose. How much nicer than treats - I'm sure the diabetic kids (etc) even appreciate the focus not being on foods they typically can't have. I was also able to tell this teacher all about the potential sensory issues, etc. It was this year to fess up to 'these are all the problems you might see' vs. the previous years where I didn't say anything about any issues for fear it could have negative consequences and low expectations.
I third the vote for a rice cooker... mine has a delay setting as well as a porridge setting so we make all kinds of hot cereals for breakfast and prepare them the night before. Every minute counts in the morning.
Interesting to see all these reports of big kids, mine are big too. My (formally) ASD kiddo was/is particularly large. Born at 10 lbs, 18 lbs by three weeks, 7 and also in a size 10 slim.
Posted by Amom whoblamesva... on 02/03/2009 @ 11:51AM PT
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10 lbs! Charlie was 8 lb 3 oz and 21 1/2 long (I'm 5 feet tall so he really surprised everyone).
Though he doesn't express this in words, I do think Charlie has a sense of what foods don't "agree" with him---pizza, for instance. He used to always want to eat the crust but now he says no to that---I think he's figured out, the cheese is not for him.
He never gets up in time for breakfast; his teacher has snacktime at 10am for the class.
Posted by Kristina Chew on 02/03/2009 @ 03:38PM PT
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Yes, 10.12 pounds to be exact, and I'm 6 feet tall and my doctor was equally surprised. (there are so many reasons I don't think doctors always know what they purport to know... :)
I have often wondered if his high birthweight has been a factor in how his ASD was more mild than some and thus why it was more reversible than what other kids experience. I know for certain he nursed better before he was given the HepB, had he been my first baby I am positive I would not have been able to tell the difference in how he nursed because those very first days as a nursing mother were so painful to me. In time he gave me severe blisters, and though I brought the issue to the attention of our pediatrician he discounted it because the baby was growing at such a rate as to make the doctor conclude there was no feeding 'problem'. And, he developed wheezing at just a few weeks old that required albuterol, soon thereafter the constant ear and sinus infections started. Being parents believing firmly in 'science', all his shots were on time. His poor health continued. Then, he didn't roll over correctly, he didn't arch and roll, he threw a leg over and used the momentum to 'roll'. Next, he didn't crawl correctly, he drug himself in an awkward manner... So many, many signs something was wrong, but we never suspected shots. Even after his significant reaction at 12 months, I didn't get it for a long while and continued immunizing. I feel really stupid, in retrospect.
Posted by Amom whoblamesva... on 02/03/2009 @ 07:13PM PT
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Diana - I wish I were tall like you! I too had a big baby (11 pounds), but I'm little - just a couple inches taller than Kristina mentioned. My son made me look like I was carrying twins! Every time I went into the hospital with pre-term labor, they set me up in the "multiples" room! By the time I had my daughter almost two years later (who was a little over 8 pounds), I had no concept of "appropriate" baby size. I kept asking if "she was ok" - she looked so little to me! My body has yet to forgive me for having such big babies though...sigh...if only I were taller...
Posted by Jody Mack on 02/05/2009 @ 10:57AM PT
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Hi Norah & Emily -
I saw this abstract the other day and it was just one more sign of how complicated things can get. It is now officially on my growing list of papers to read. Anyways:
Autoimmune pathology accounts for common manifestations in a wide range of neuro-psychiatric disorders: The olfactory and immune system interrelationship. (2008 Dec)
Stranger than fiction. Anyways, everytime I try to post a link here something does south and it doesn't really render right. You know what to do.
- pD
Posted by passionless Drone on 02/03/2009 @ 03:05PM PT
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This is interesting to me, but the abstract refers to olfactory 'impairment'... well, if Norah and Emily are like me, chances are it is not fair to call it an 'impairment'. Rather, it is a very acute sense of smell. (as a child, I detected a natural gas leak that baffled the repairing technician as his meter indicated the leak was below the human threshold of detection. noone else but me could smell it.)
Recently, I took my son to an optomitrist's office which was heavily, heavily scented. He regressed before my eyes, on the floor in the fetal position within about 10 minutes. He had a very difficult time attending to the exam, I apologized to the doctor and told him I thought it could be the scent. He said, 'which scent is it? I've heard this before, but we have this plumbing problem we are trying to disguise...' So, I don't know if it was the artificial scent or mold that caused my son's distress. He HATES to be alone or out of my sight, as I paid the doctor he told me, "I'll wait for you outside, Mom" and promptly went outside. Within a few minutes, he was fine.
I would venture that these kiddos have very acute senses, and perhaps we parents do also. It would be interesting to learn more about this.
Posted by Amom whoblamesva... on 02/03/2009 @ 06:56PM PT
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I'm on the GFCF diet. I should mention that it is not because I think it will "cure" me, but because it agrees with my system.
On to the next thing. Kristina mentioned how autism is lifelong. I just received a DVD (free) from the Pennsylvania Department of Public Welfare. It is titled, "Second Look--Adults With Autism."
The back of the DVD reads: The mission of the Bureau of Autism Services is to develop, coordinate, integrate, finance, and establish policies and services to effectively serve Pennsylvanians of every age and ability living with Autism spectrum disorders (ASD), as well as their families and caregivers, to enhance quality of life and to promote independence.
I think this DVD raises some good points, although there were a few things I wasn't on the same page with (terminology and depiction related things). However, if you are interested in this DVD then here is the info taken from Autistic Self Advocacy Network's website:
Autistic Adults Video Produced: ASAN Vice President Scott Michael Robertson was among several autistic adults featured in Second Look: Adults With Autism: Autism Affects Every Person Differently, a 17-minute video produced by the Pennsylvania Department of Public Welfare's Bureau of Autism Services. The video can be obtained for free from the Bureau of Autism Services by sending an email to DPW-AutismOffice@state.pa.us with your shipping address and the DVD title. It will also soon be available to watch online as a streaming video.
Here is the web address for ASAN:
http://www.autisticadvocacy.org/
Posted by Elesia Ashkenazy on 02/03/2009 @ 05:00PM PT
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pD, thanks for that info. Yes, I do know what to do! Diana...I can just kind of lose it if I get around someone wearing perfume. I have to leave--I just can't stand it, and it's not because I'm allergic but because I'm just sensorily overwhelmed. I believe they used to call people like me "neurotic."
Posted by Emily Willingham on 02/03/2009 @ 07:00PM PT
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Does noise bother you, too? My babies 'trained' me very early on... I'd do whatever it took to get them to QUIT SCREAMING.... Of course, it was probably normal fussing, but totally intolerable for me.
My husband is sensitive to scents as you describe, he pulls his t-shirt up over his nose to avoid them.
I notice the flickering lights in some stores (costco comes to mind) drive me similarly batty after a little while.
I was recently in IKEA and I could hear this child screaming long, long before I saw her. Poor thing, she was in a wheel chair and was so sensory defensive she was screaming as if someone were beating her, and I suspect that is exactly how she felt. And, the place is such a maze, I dont' think her parents knew how to get out. Once I could see who and why the screaming was happening, i was much less annoyed. Though, I suspect very few people would have felt the same way. People just don't know about sensory defensiveness.
Posted by Amom whoblamesva... on 02/03/2009 @ 07:28PM PT
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With artificial scents such as perfumes and those thingies that make rooms smell 'better' I have the added discomfort of them setting off hayfever attacks. Also, they smell bad. And so very overpowering.
I seem to both hear and smell better than a lot of other people. I don't know if there is anything special about my vision, but when it comes purely to sharp vision: I wear glasses :D. I do see lights flicker a lot sooner than some people, but mostly it just bothers me a lot more than most people.
Loud noises bother me, children crying can be bad, but sudden noises and certain kinds of noises are far worse, like toilets flushing and washing machines and vacuum cleaners.
Posted by Norah vd Stel on 02/04/2009 @ 02:48AM PT
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This was informative and moving. Thank you Warrior Mom. Rev. Bookburn - Radio Volta
Posted by Rev Bookburn on 02/03/2009 @ 07:06PM PT
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Sudden noises, repetitive noises, and noises whose source I cannot identify bother me, especially repetitive noises. When my kids are loud, I can stand it as long as I'm just sitting there, not trying to do anything else. But if it reaches a certain level, I can just break. I hear like a bat.
Posted by Emily Willingham on 02/04/2009 @ 05:44AM PT
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Completely off-topic, and not sure if there is some other, better place to report it, but there seem to be an awful lot of viagra spambots (I hope they're bots, anyway), making pledges on change.org...
Posted by Norah vd Stel on 02/04/2009 @ 09:54AM PT
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@Norah - a hilarious addition to a thread that segued into oversensitivities. thanks!
@Emily - finally something we can agree on! :)
Posted by Amom whoblamesva... on 02/04/2009 @ 10:49AM PT
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Diana...I think as long as no one mentions "vaccines," we probably would find agreement on many many things! ;-)
Posted by Emily Willingham on 02/05/2009 @ 11:26AM PT
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This is such a great post. This is exactly where I am right now in this journey. There is a delicate balance between advocacy, and obsession.
I use to get mad at my husband for his "less passionate" approach to the newest therapies. Now, when I watch him with our son, I realize there was real wisdom there.
Posted by Alison Burgess on 02/07/2009 @ 03:48PM PT
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Wow, this post and all the comments finally helped me understand a lot of things about about my son. He was born 9 lbs 13 oz.--a big baby. He has extreme sensitivity to certain noises--the fire alarm at school and emergency vehicle sirens are at the top of his freak out list. But, he also hears sounds that are so quiet other people tend not to notice. He also is sensitive to touch--screams if a well meaning friend or relative tries to kiss him--and he's done that since he was a baby.
The GFCF diet though was not effective for my son at all...We tried it for a while, but then my son refused to eat anything if he couldn't have his standard macaroni and cheese. My son also wasn't diagnosed until much later--age 9.
At IEP meetings, the focus is always about deficits, rather than playing to his strengths--until this year when I stood my ground and told the school that I would pull him out and home school him if they insisted on going their route.
His case manager who is also his reading/language arts teacher wanted to pull him out of chorus--the one class he truly loves, and makes him want to go to school every morning and put him in a her social skills class to give him more opportunities to interact with his peers. I refused to allow that. He is in our church youth group and Boy Scouts where he interacts well with same age peers. I also felt that being in yet another special class would cause him to regress, remembering that my son didn't speak much while he was in a therapeutic pre-K--where the other children were also non-verbal. Shortly after entering the school system and being with other children who were speaking, he started talking in sentences.
Posted by Kathryn Savage on 02/10/2009 @ 07:00AM PT
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Thanks for making me feel better about something I never bothered to do. I couldn't bear to see mum's darting across a gathering to pull food out of their kids mouth because they inadvertently ate a cracker. Until that point the kid had been fitting in but boy; not after that.
But I can empathise with what you say about feeling guilty and wanting to compensate by controlling everything. I've done that in different ways. Sometimes too much, sometimes not enough, but I can say that getting rid of the toxic people in my life has been far more beneficial than looking for toxic food!
Boo has learned to use the George Forman mini grill to make ham sandwiches. And I am proud to say I recently switched him to whole grain kibbley breads after a trip to my sister's house in Australia, where she encouraged me to improve his diet by example. Everyone eats wholegrain now - no white bread in the house.
He also makes his own cereal; rice krispies with milk and capilano honey; and he can microwave his Amoy noodles independently.
Sure I have to clean up the kitchen afterwards but it is worth it to see his age appropriate independence developing. He even uses the hoover to clean up the popped rice sometimes by himself.
Because Boo is in an ABA school, the focus is 90% positive in his lesson planning as they use his strengths to constantly reinforce his skills. The 10% is just a discreet meeting where I get to let off a bit of steam about a new behaviour curve, they tell me if they are observing anything similar and we work out what is usually a single A4 page of agreed techniques to overcome the new curve. There is a lot more action than talk in this new school.
xx
Posted by lisadom dom on 05/10/2009 @ 10:27AM PT
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