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Post by Jackie on May 9, 2004 10:47:40 GMT -5
In response to a "write your senator" letter that is going around ....I sent the following to my Teens and Adults site. We had been discussing how those of us out of school settings now are too tired to really get up our energies and fight once more and how its up to those of you who are younger and in the middle of it all...
I hope you will read this...and it will fire you up a bit.
Jackie ****************************************** You know, Gwenn, I fought soooo hard when Emily was just a toddler. I was president of our ARC here and it fell to me to get our then "segregated" school for the mentally retarded into compliance with TEA regulations. They had given schools three years in our state to desegregate the disabled....get them into traditional schools....but...being that Texas is so big....they sort of got it started then left it up to the districts and only stepped in when someone reported non compliance and worked them on a case by case approach. So ...when I took over the ARC and Em was only 4 ....it was into year FOUR...so we were out of compliance and no one here the least interested in disbanding our school for the mentally retarded (which was housed in substandard conditions in an old school off the "Boulevard' here which is frequented by drug dealers and prostitutes.) The ARC Texas said the job fell to me....LOL (me who didnt even know what IEP meant)...and believe it or not...my biggest hurdle was the PARENTS THEMSELVES...who liked being snuggly tucked away and safe. But with help from ARC/Texas (where I first met Norine that Em is going to live with)...we got the job done. ARC sent me to numerous Advocay training sessions and I really got into it...did workshops..etc. But as the years wore on...I ended up really focusing just on Emily and her needs. What disturbs me now is the apathy or lack of zeal on the parts of many parents....they just assume that whatever the schools tell them to do is WHAT they should do. They are ending up more segretated in many ways than when we began the process of moving our kids into traditional schools....The barbed wire around their classrooms is getting higher and higher...and the moats deeper and deeper. I guess if you dont have to fight for something initially you dont appreciate what you have.
I know those in our new DS group are tired of hearing my spiel....but I had the good fortune of attending with Emily a Youth with Disabilites conference in DC several years ago (the one where we all marched on the Capitol....LOL) and heard the now deceased....guru of disability advocacy Justin Dart speak...his address was his concern that the 'movement' is dying out....he was of the era that had people in wheelchairs handcuff themselves to the fence around the White House to make a point. So I hope these parents take heed and dont sit on their duffs....I know there are some real activists out there...but one or two ...here and there ....will not insure that people with disabilities continue to get all they need. As many have said....(yes, I know...not my favorite person either...LOL) "It Takes A Village"....and WE are the village.
Jackie
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Post by shellk on May 9, 2004 14:31:29 GMT -5
Jackie, That was very well said, and I just wanted to commend you on sorta being a pioneer....If we all could get together things would get better I agree....Just a powerful statment that you posted I love it. Sorta felt like a pick me up..I fight for Kourtney all the time and feel like the others not all but some of the parents are duff sitters with big mouths the whine a lot but do nothing about it...Thank for the pick me up...
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Post by christie on May 9, 2004 21:19:41 GMT -5
Hmmm JACKIE, I have to say I really don't believe apathy or lack of zeal (maybe with a few) of the parents is how I would describe things. From one that has advocated for my son from the get go and even hired an advocate to train and teach me how to do better for Chris and other children, I do believe unless one walks in anothers shoes they have nooo idea what another person is dealing with.
What came to mind after reading your post was ...
Where are the parents? By Sue Stuyvesant 10/15/96
Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child’s medical needs can be properly addressed.
They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn’t pull through? The are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.
Where are the parents?
They are sleeping in shifts because their child won’t sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of there own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families. They are busy, trying to survive.
Just my thoughts
CC
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Post by laurasnowbird on May 9, 2004 23:09:15 GMT -5
Hmmm, been thinking about this one for a little while. I don't think parents are uninvolved by choice, I think the state and federal regs are unfriendly to the average reader, and unnecessarily complicate the process. I'm not saying it was easier when you were doing it with Em, but I think you guys had the slight advantage (once you were allowed to pursue inclusion) of catching the schools flat-footed. Now that they've been dealing with us for years, they've developed some pretty effective and intimidating strategies for keeping water in those moats.
Parents coming into the system are unprepared, but the schools see us coming. I am VERY active in my district, I chair our (federally mandated) Local Interagency Coordinating Council, and I serve at the state level on the corresponding council. I know my rights, advocate for my child, and help other parents on a regular basis. I see the school districts saying to parents with authority "Your child is not eligible for ______ because Reg *** says they have to be ....." Fill in the blank with whatever you want, because the things I have heard them say are so ridiculous you could put d**n near any word in there, and when they are quoting regs, parents back off. I worked for an attorney for years, and developed sufficient competency that I was researching, analyzing and drafting his briefs, and I STILL found this stuff confusing and open to liberal interpretation. I can't imagine what parents with less education or life experience think of it!
The disconnect between state and federal regulations ties many parents in knots, and the schools are adept at using those discrepancies to deny services. Federal regs are certainly the higher authority, but many parents don't know that.
Schools have used the regs in a manner in which they were never intended to be used - to set up a little "cottage industry" of special education. Somehow the message that IDEA 97 ASSUMES inclusion has been watered down and lost over the years.
I have been asked by family members and friends since Ethan was born why I invest so much of my time and energy in the manner that I do. The answer is the same now as it was then - I felt so fortunate when Ethan was born that all I had to do was pick up the phone and make a call to get services set up for Ethan. Somebody (a bunch of somebodies) already fought that battle for me and won. The least I can do in return is to devote time and energy to ensuring that those same services are available to the next generation of children with disabilities. I'm probably sounding like I have my back up here, and if so, I apologize. But I am defensive on behalf of all the people who feel paralyzed they the sheer intricacy of the whole special education system.
Those who can, do. Those who can't, don't. I hope that those who can't are at least grateful to those who are spending the time, but if not, OH WELL. I get VERY frustrated with people who complain, but do nothing, but I have come to realize that many of them, even if drawn a map, are still too paralyzed to take that first step. It is my opinion that those who are blessed to have the knowledge or experience or education to improve the system are duty-bound to do their best for EVERYONE'S kids.
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Post by christie on May 10, 2004 0:09:19 GMT -5
You know with all due respect, this post has bothered me from the get go, not all find it necessary to say to the world what they do on behalf of advocating for our children. Not that long ago someone else posted here that they thougth they were the only ones that voiced their opinions and wrote letters, Hmmm Sooo I am very insulted actually that one assumes one sits on their duff and I disagree that only the ones of the younger ones voices need to be heard. Personally ALL need to be heard young, middle, old, whatever.
As you stated it takes a village well that includes, the young the middle and the older, tired ones too in my mind.
K, I just needed to share that Jackie as I have to say I find this post uncalled for and puts people on the defensive as to share what they have done to advocate for our kids behalf.
We are ALL entitled to our opinons here and yours is yours and mine is mine ;D But thats just me, so take it for what its worth
CC
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Post by Jackie on May 10, 2004 9:04:43 GMT -5
I am very sorry and did NOT mean to put people on the defensive...I know that many of you who post here are very involved with trying to change and improve the system. I applaud you for that....I really do. Remember I had four children who were high maintanence....and I also had all the therapies...enrichment classes...doctor appts to deal with. I am not saying I did something that no one else was doing....never would I want to pat myself on the back that way. What I wanted to say was....that ...I see the schools...at least here....trying very hard to warehouse our kids with disabilities...put them in self contained situations...put up as many road blocks as possible to inclusion .....and seeming inability to understand the concepts of modification. I know inclusion for education is a "choice" but it is a good one and I think more supports need to be provided for us as parents if we choose to go this route. I also know that being an advocate is not everyones bag. It surely wasnt mine at the very beginning....I was a quiet soul...not outgoing....not assertive. But when I saw where Emily would end up receiving her education I realized I had to take a stand...and I did...and just kept on going. I agree that everyone...no matter where they are in life with their children...need to stay involved and rest assured I do. I think what I was trying to say ...is that I hope parents will not just think what they have will stay forever the way it is or improve if they dont get personally involved. For years here I felt like a one man band.....people would say to me..."well you and Emily are our trailblazers" and instead of a compliment it made me fume inside. Here I was going to meetings and conferences...taking time away from MY family....coming home and puting on workshops which were spottily attended...and talking (in positive tones) with administrators....trying to make things better for all. ..with very little help from anyone else. It was very frustrating for me to see others just letting the schools tuck their kids away in some convenient out of the way place....because they were afraid to express opinions or didnt know they had that right. As a result Emily was sort of the "cheese standing alone" in the early days of inclusion....it would have been so nice had she had some disabled peers out there with her. But like many of you I just kept pushing ....and things did begin to open up after awhile for others. And...you know...my friends loved what they got....thanked me even...but couldnt light a fire in any of them and it was very frustrating. Also I began to fear the system would "see me coming" so by the time Emily was in HS I just sort of concentrated on her and making her four years there quality ones. I want to say that there were a couple of very militant parents also at this time...parents who were determined to get every last morsel they could document for their kids...whether they needed it or not...in a very belligerant and commanding manner...and I was trying not to be identified with them....which is why I sort of changed course in Emily's HS years. I am still actively involved in trying to obtain quality "last three years of entitlement"..(.that is the education our kids are entilted to until age 22) thru our community college here rather than spending 7 years on a HS campus. I think what inspired me the most was my being included in ARC advocacy trainings. I think Partners in Policymaking which most states have is a great thing ...but I agree it is too time consuming for most. I also understand that I had the luxury of being a stay at home mom for many of those years....until I opened my retail business. In this day and age where 3/4 of women of younger children work it is not always possible to take time away...but with the PC which I did not have back then ...people can research and share ideas thru message boards like these. I also think there is power in numbers....and a group of parents locally ...banded togehter with best intestests of their children in mind can sometimes make more of an impression on their school system than a single parent threatening litigation. I constantly run into parents that have no idea of what their rights are....what free and appropriate education in least restrictive environment even means. Since I have brought the advocates out inFULL FORCE with this post...LOL...perhaps we ought to think of adding another full topic here....maybe calling it ADVOCACY so those of you who have spent countless hours researching policy....and sharing ideas with others could share with everyone. Despite everyones best attempts there will always be apathy....and those who just ride the coatails of others...and that will always be frustrating. I am at work now in the areas of supported employment and independent living....so dont think I am no longer involved. I constantly urge young parents to educate themselves ...starting at least by age three to avoid pitfalls. Locally we dont have many resources for this... a parent would pretty much have to go somewhere else to get fires lit. But by having a concentrated area here on UNO dedicated to serious stuff .... maybe we could become a cyberspace leader in keeping the flame alive. I may have offended some of you....but I am not offended that you told me....just excited to see your involvement and as I said before....I applaud you and keep up the good work. Jackie
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Post by Alice on May 10, 2004 10:02:32 GMT -5
CC, Thanks for the "Where are the parents?" Alice
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Post by vicki c on May 10, 2004 17:47:48 GMT -5
well jackie.. ...i thought what you had to say was very insightful!!!!!!! (and i'm not saying that there aren't MANY MANY MANY parents out there who read this board who are WONDERFUL advocates for their kiddos!!! )..........but you are right...there is strength in numbers.................i feel that i have a fairly grasp of what services are out there for philip, but i tell you, when we started the public school system this past january--it was a whole new ballgame!!!!!! (a ballgame in which i thought i was prepared for, but HELLO---IT IS DIFFERENT!!!!) this is the school system who gave philip an I.Q. test before he even started school!!!!! YIKES!!! ???you know i have a friend who has a son who is 13 (i think)......the only classes that he is included is LUNCH AND SOMETIMES P.E.!!!!!! wow!!!!! :'(that terrifies me for philip!!!!! it is very for me to say "my son WILL be included in more "typical" classes!", but without more parents taking a stand, our battles will be more difficult!!!!!! so anyway jackie..........i understand where you're coming from!!!! i know not everyone in the world can be a mover and shaker----but we can all do a little part!!!!!...vicki
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Post by MaggiesMom on May 11, 2004 0:19:31 GMT -5
I voiced my opinion recently that I felt like I was the only one who had ever written my congress person etc. I'm sure others may, but I have never once had another parent of a child with DS tell me they have written anyone...until I posted that on this website.
It helps me to know that others do write and tell the "big people" in the world that our kids matter. Sometimes I feel like I'm fighting the world...school, insurance company, therapists, government, etc. I'd love to know how others have faired. What, if anything was accomplished. How I can change IDEA so that it helps my child succeed in school? The list goes on.
Sure, it's not for everyone. Nothing ever is. But, to those who are trying to "fight city hall", it seems to go better when as Linus says... "a group of parents get together..."!! That was my point, if we all get together, I feel like our voices will be heard.
Even if I'm screaming by myself, it's nice to know that someone screamed that same scream before me.
Never meant to cause any friction. Always out for more information.
Thanks for your opinions. I value them all.
Robin M - Maggie's mom
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Post by Jackie on May 11, 2004 8:41:43 GMT -5
yu are so right....I think large groups of people often make more impact. I can think of two instances right off the top of my head. When Emily was five I flew with her and a 40 yr old woman from here with DS who sat on the ARC board to testify before the Texas Congress about their moving people back into the community from the institutions...but not moving the monies with them.....long drawn out issue which has been partially resolved. Anyhow .....let me tell you....I am NOT a public speaker...put a mic infront of me and I freeze. I have no idea how I got my speech delivered...but tapes I saw later didnt show that my arms were stuck to my armpits...LOL...em smiled britely...and it was an event that went on for a full day and made a great impact. Then when Em was about 18 we were funded for a trip to DC for a National Youth with Disability conference....and joined forces with an adult group also meeting on disabilities...and marched on the Capitol shouting...what do we want....we want to work...when do we want it...NOW.....over and over....and someone at the git go grabbed Emily and another young man and put the lead banner in their hands...so they led the whole parade which took well over an hour....and had probably 1000 people in power chairs as part of it...ending in a talk with Teddy Kennedy on the Capitol steps. I dont know if it was effective...but you couldnt sweep us under the carpet on that one for sure...had to be awesome to view. ( I am not exactly a militant...LOL...and my older kids got a good chuckle out of their mom marching on the govt....especially daughter Katie who lived in DC and along with all her office watched us pass by....gave her a MIGHTY fist...I did ...I did)
For a while here we had an advisory board to special ed...but it was rather ineffective. I tried and tried to get parents around the city to form a Special Ed PTA (of course we coudnt call it that) but since our ARC had fallen apart and we didnt have any DS or other organized support groups I always thought that to meet regularly and discuss options and who had what and what was and wasnt working with a multitude of parents of kids with varying disabilities would be a real eye opener for so many and we could have been a "force to deal with" within the system. Got some interest for the first one....maybe 30 parents...good meeting...then da nada from there on out. It's hard to convince a school or a district that promising practices ARE the best way to go when you are about the ONLY parent addressing these issues. Makes your assertions lose credibility in their eyes...and you become the "renegade" parent. Bet some of you can identify with this one. But, you know, I would fight for any of my kids if I felt they were being short changed and did on occasion with the others.
Jackie
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Post by maryj2 on May 11, 2004 9:27:01 GMT -5
Jackie: After my son was born (He is 4 now) I looked for some sort of group to join. I thought for sure that there was one. My son was born in Austin and we at the time lived in Georgetown. We found it difficult to find any information about DS groups. The only group we found met in Austin and that was difficult for us with a sickly newborn (and other kiddos at home). I was very frustrated and surprised actually that there was not a more organized group of parents with kids with DS that were young. We finally found a group of parents through the local ARC which was going through a mess of reorganization. And with the help of a couple of other families we started a group nearer our home. My main frustration was finding a parent to ask questions of - this was before I had found unomas. We found out quickly that even the early childhood intervention professionals did not really know what to do. Now we have moved to Salado (a small town) and are kinda in the same boat. It can be tough to "hook up" with other parents sometimes. I literaly have stopped people in the grocery store and given them my number. I have found that many parents do not want to form any type of group and that they are too busy. I believe there is power in numbers and I will continue to try. Even if your school district is a good one it helps to have a support group - you never know when things will get tough.
Mary J.
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Post by Jackie on May 11, 2004 17:32:34 GMT -5
I agree...numbers are best...but when that is not doable...we just have to get in and do what we have to do. I wish Robin Chases mom would chime in and talk about what she has done with him...I remember being so impressed when she made posts about dealing with the system over what she really believed was in his best interest. Having worked in the field she has some very good ideas.... One of the hardest fights I had ...and you will LOVE this...was getting Emily included in a Home and Family Living Class....becausssssse...(whispered to me in my ear by the sped counselor at the IEP mtg because as usual Emily was present.....) (whisper) (whisper)..."Jackie in this class they talk about.........???SEX!" Now mind you before Emily came into the room I had laughingly been talking about rousting Emily and Kenny out of the alley....where they would disappear behind our dumpsters if we turned our heads when he and his mom came over....LOL...if anyone NEEDED a class that dealt with S-E-X....it was Miss Em!!!!! Needless to say I made them put her in it...and she got a lot out of it...including a personal decision of her own not to have children after doing the computerized baby exercise....and discovering what a pain in the b*** that very cute baby was. Jackie
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Post by christie on May 11, 2004 20:09:27 GMT -5
Got this in my email just now, from a speech group I belong to and thought this would be the perfect thread to post it under if your interested.....
The League of Special Education Voters of the United States, Inc. (www.SpEdVoters.org) AWAK(e)A_dvocacy Went out last night Faxed to all Senators by Dawn
Dear Senator,
Our military is the finest and most compassionate force on the planet. The members of the military that I have had the pleasure to meet exemplify the best about our country. I am so proud that in my country, it is the best people who choose to, at great personal risk, serve and protect us.
While Captain Roger Morin, of North Carolina, was serving his country in Operation Iraqi Freedom, his 5 year old son with global apraxia was being restrained in a chair for not completing fine motor skill tasks with the other children. According to Mrs. Patricia Morin, her husband feels that "dealing with special education here (in the U.S.) is much worse than anything I encountered in the Middle East". Not only does that exemplify just how capable our soldiers are, but it also demonstrates just how dysfunctional our educational system is.
Like our military men and women, our teachers deserve a great deal of credit and admiration for the work that they do. By and large they are a talented and dedicated group of men and women who serve us and our children well. However, no system is fool proof. For example, while Army Captain Roy Speaks was deployed overseas in our war on terrorism, his 5 year old son, who is non-verbal, was repeatedly found wandering the streets and ravines outside of his school. No reports were written up, nor was Mrs. Speaks ever contacted by the school. If it were not for a comment made by a paraprofessional four months later, Captain and Mrs. Speaks would still not know that their son's safety was being compromised. There are many other examples of otherwise good people making poor judgments; unfortunately some have even led to the deaths of improperly restrained children. What is all too common is that rather then taking corrective action in response to these tragedies, the administrators rally to support their comrade and instead blame the victim for the crime. Sometimes, even when teachers try to do the right thing for their students, they are inappropriately sanctioned for it. In Portland, Oregon, an adaptive physical education teacher was fired for advocating for her students. The resulting successful lawsuit by this teacher (Settlegoode v. Portland Public Schools) is a powerful reminder of why we have laws in the first place.
How do these things happen? Organizations often take on lives of their own, apart from the individuals who make up those organizations. Without the proper checks and balances built into the system. there is no mechanism to correct poor judgment. Alas, in some institutions, the poor judgment is actually expected and even accepted. One of the roles of the legal system is to provide a forum for victims to air their grievances and, if appropriate, to change the behavior of the organization.
We are a nation of laws. Our laws are designed to protect our people from the aberrant actions of a few. The fact that most of us are "good" people does not negate the need for laws; in fact it supports it. Most of us would never kill another person, yet laws against murder exist. Most of us would never hurt a child, yet laws against child abuse exist. Most teachers would never arbitrarily remove a child from the classroom because of non-disruptive, non-violent behavior, yet S.1248 would eliminate the child's protection from the aberrant action, or poor judgment, of a few. How is that fair, not only to children with disabilities, but to our entire of system of laws?
Another prime tenet in our system of laws is that people who obey the law should not be penalized for doing so. Yet if S.1248 is passed, the teachers who choose to teach ALL of their students will be at a disadvantage as compared to those teachers who choose to misuse their authority and remove students from their classrooms simply because they are “harder to teach.” No Child Left Behind requires that schools report the test results of all of their students. However, they are not required to report the test results of students who do not remain in a given program for an entire school year. Thus, by removing children for real, or imagined, offenses, a 'change in placement' may occur, exempting the school from having to report the test results of students so removed. In effect, the teacher who obeyed the law and taught all of his or her students would appear to be less effective than the teacher who selectively reported test results by removing the “harder to teach” students from the classroom.
We do not want anything for our children that you do not want for yours. We want them to be educated effectively and compassionately. We want them to have the same right of presumed innocence that extends to all other Americans. We want the proper supports so that our children can act in an appropriate manner. We want our children to be treated with respect and acknowledged for the contributions that they make. Most of all, we want our children to grow up to be happy and productive members of society. Unfortunately, S.1248 will make all of this extremely unlikely for our children.
You will be asked to vote on S.1248 shortly. When you do, I ask that you keep the needs of the children paramount in your mind. The teachers, Governors, and other groups have full time paid professionals to push their agendas. Our children have only us, and hopefully you, to protect them. Please do the right thing for our children and vote NO to S.1248.
Sincerely yours,
Larry Greenstein - New York
Felicia Hurewitz PhD. - Pennsylvania
Dawn Klein - Ohio
Debi Lewis - West Virginia
Patricia Morin - North Carolina
Susan Ross - Florida
Mike Savory - Virginia
Capt. And Mrs. Roy Speaks - Hawaii
Meredith Warshaw - Massachussets
On behalf of The League of Special Education Voters of the United States, Inc. (www.SpEdVoters.org) and the more than 9000 voting families who signed our petition at www.petitiononline.com/nos1248/petition.html
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Post by Jackie on May 11, 2004 20:33:52 GMT -5
Great....this looks like a super organization...I am going to check it out ....and have already passed the info along....thanks for sharing this with us......Jackie
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