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atdt31_US

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Reply with quote  #1 
Hi All -- I want to gather info to give to my local school board (and maybe state board) of education.  Obviously it will include Eva Musby's amazing compilation.  In addition, I'd like to be able to give them a print out, perhaps of this thread, that would have your stories all in one place.  Concise, ideally, and your honest assessment of what started your child down the ED path, where such path included a school component -- actual curriculum; remark by a coach; etc.  If you'd like to share, I'd be grateful.  The audience that will get this will not be ED-savvy.  I am not asking for hyperbole, but fill in gaps you know regular readers on this forum would not need you to fill in.  ALSO, if you are willing, put in a short "Victim Impact Statement" setting out the major ways your child's ED changed your household including jobs, siblings, stress, finances.  

I truly believe a campaign to school boards could get them to move swiftly to change the way some of the curriculum is handled.  I recall when my d was in Fifth Grade, meeting with the teacher that would be teaching about eating disorders in a one or two day (hour) class -- he had had zero training on eating disorders and, while he had certain pages in a certain book he was mandated to teach, the supplemental videos and his own lecturing was completely his to figure out.  He was very willing to be educated, and changed the class that year.  It is stunning that he had zero training on them, either factually or, more importantly it seems to me, the impact his words could have on a child and their family and their family's finances, etc, if his words were that child's gateway to an ED.  Also stunning was that he had been provided zero training on what to look for during any sort of question period from the kids, or thereafter, to stay attuned to if kids seemed to do things differently.  

I do not expect schools to stamp out EDs, or to identify them in the first minute they start to take hold.  But I do expect all schools to know the seriousness of EDs, the fact that many can be traced back to a kid (a genetically vulnerable kid) starting a diet or changing an exercise regimen, etc, because of a classroom activity or lesson. I also expect schools to recognize the gravity of the subject matter and to approach it no less seriously than they do things like Sex Education, or performing Code Red/Active Shooter Drills -- both of which they are sure to give parents notice of prior to the activity.  I think all parents should be provided notice of the types of lessons that might become the thing that started a kid down an ED path.

But our local school boards (and, in a city of any moderate size, their big-name-law-firms) are not silent intentionally.  They also need the education -- and I really think if they knew the potential for damage, they would meet "us" at least halfway --- and thankfully Eva Musby has a good way for them to start.  But first they need to know.  And nothing will hit home with them more than the honest, gut-wrenching stories here that all-too-often, include a (not the, but a) trigger starting in school from the teach or coach.

If you are willing, please share your story here and I will print it and de-identify it as to username (please don't use any in the body of your reply) and disseminate it locally to get this changed.  I can't believe it won't be easy if they only knew.  

Maybe a header of sorts to include your country, your child's gender, and your child's age when ED started.

I will wait a month or two to do this -- and if it works I will gladly share the letters I will be writing to our local and state board as well as their attorneys.  Thanks in advance. 



__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
atdt31_US

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Reply with quote  #2 
I would have started but mine is not a school-contributing story, at least to the "trigger" for ED (ours was from birth).  BUT school being completely uneducated has certainly made our efforts at refeeding more difficult at times -- so perhaps I will gather some thoughts about that and include it soon.  Feel free to include ways school could have helped once you identified the ED as well -- thanks.  


__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
atdt31_US

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Reply with quote  #3 
Also, if you are long-time forum reader and recall some stories from people who don't come on anymore, if you post their username I'll search through their posts to try to extract their school info.  But there was just too much for me to search through to get everyone, thus this plea for you all to cut and paste or type in your story on this thread.
__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
Ping_Pong

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Reply with quote  #4 
Initial trigger for D was having height and weight taken in Year 6, which is standard practice in UK schools. Afterwards, she and another girl were comparing their results. ‘Well, I was told my weight is fine for my height,’ said the other girl, ‘so you must be overweight.’ Which she wasn’t. And you can guess the rest of the story.
atdt31_US

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Reply with quote  #5 
Thanks ping-pong, can you clarify what age she would have been!? Thanks so much.
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Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
teecee

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Reply with quote  #6 
We are in the U.K. My D was weighed in school at a time that she was a high performing athlete (strong muscularly and fit). She was the heaviest in the class and overheard some pupils commenting on another girls weight (7 kg lighter than my D) saying to the girl that she was too heavy... my D was unhappy as she felt she was too heavy (even though her weight wasn’t disclosed to the rest of the class. On top of this her new coach at the time took one look at her and told her she was too slow and needed to lose weight to get faster. He had her then perform certain exercises then retracted his statement....too late, damage done.
atdt31_US

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Reply with quote  #7 
Thanks teecee. Sorry that happened and thanks for sharing it here.
__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
teecee

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Reply with quote  #8 
No problem at all. Also YR6 in the U.K. is the end of primary school so 11yrs old however my D was also weighed in high school at 14yrs old.
Ping_Pong

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Reply with quote  #9 
Hi, atdt_31,

My D was 11 when she was weighed etc at school.  Dx of RAN came 7 months-ish later.  We got a v quick referral and treatment, thankfully, once we twigged what we were up against.  FBT - one relapse since - and ever vigilant here after.  School v supportive throughout treatment - can't fault them.  Don't think she is due to be weighed again as part of the school's programme of monitoring.  (JUST LET THEM TRY!!!!!!  We'll be off for hot chocolate and cake that day, which is what my D's ED nurse did with her daughter when her turn came for being weighed in Year 6!)
atdt31_US

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Reply with quote  #10 
Quote:
Originally Posted by Ping_Pong
Hi, atdt_31,

We'll be off for hot chocolate and cake that day, which is what my D's ED nurse did with her daughter when her turn came for being weighed in Year 6!)


THAT is terrific!!  

__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
tammy

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Posts: 60
Reply with quote  #11 
My s ED was started after a lesson in school teaching them how to read food labels at age seven! He started taking an interest in labels and looking at labels in all the food I bought. He is very mathematical and would work out fat content, percentages etc. He is very clever, follows rules and a bit of a perfectionist. I noticed first of all that he was cutting back on sweets and chocolate. Then it escalated to crisps and then gradually started freaking out if he thought his dinners were not healthy. By about six months after that lesson he was rapidly escalating to the point he was terrified to eat anything. He started trying to exercise constantly. His heart rate was very low. He was unrecognisable as the boy we once knew. He was quiet, withdrawn and begged me on occasions “ mummy please kill me” . He was having major temper tantrums. Sometimes they lasted most of the day. He started destroying property, hitting us and trying to hurt himself. Our life was turned upside down. Life as we knew it ended and was replaced with hours in end at the dinner table and dealing with the tantrums. It affected all areas of our life as he became so rigid about everything, was not sleeping, wetting bed and could not sit down.
Hope this helps.
Tammy
debra18

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Reply with quote  #12 
Are you making a PDF of these stories? Can you send them to me?
atdt31_US

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Posts: 429
Reply with quote  #13 
Quote:
Originally Posted by debra18
Are you making a PDF of these stories? Can you send them to me?


Well, if I get done what I am hoping, I will have a little packet, including: a letter I write to the School Board; a print out of this thread or possibly a cut-and-paste document from this thread and others on this board (I need to figure out if I can do that without contacting the authors); and Eva Musby's school packet.  My hope is to educate our local (and maybe state) education boards so they a) can't ever decide they just did not know enough to make good curriculum choices; b) have notice so they can't say they had no idea the risks if they continue to not offer any info or training to the teachers responsible for the various health, nutrition, biology, etc classes; c) give them enough info that if they have known a kid with an ED they more fully recognize the severity of what that kid and family went through and can thus help spread the word about the school's unique opportunity to help identify at-risk kids who are starting down an ED path (ditching lunches; talking about diets; shaming kids for eating desserts; etc); d) help the school have the info they need to realize the need to have training relating to helping families battling an ED (how to help monitor lunches; how to communicate to all the teachers that might have lessons an ED parent would need to know about); and so on.  Not expensive for the school, just exposure to the facts to create a more empathetic, less risky environment.  


I really believe this is more of an information-is-lacking issue on the local level than a desire to be unhelpful.  If I don't give my school system the info they need (or a roadmap of how to get that info), I don't think I can just complain about it when they fall short of my expectations in the classroom, lunchroom, etc.   Without exaggerating the effects on a child and family, I think we could grab the attention of those in the positions to make positive changes in the areas we have all identified.  

If all goes well in preparing this, I will send it to our local medical foundation, of which 98% of our local doctors belong.  Not all doctors need this info:  but GI's do; and Pediatricians do; and orthodontists and dentists do; and endocrinologists do; and gynecologists do; and urgent care clinics do -- basically those providers that will have access to our young kids need to know that their words are potent and the turn of a phrase can turn a kid down a bad path even if the intentions are good.  

Anyway, if I actually get something compiled like I am hoping, I will share it with whomever wants it.   

__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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