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Replying to Topic: Hello, is anyone reading this?
Created On 5/17/05 11:01 PM by CK


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CK
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5/17/05 11:01 PM
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if you are a "lurker" and would like to converse on any subject relating to DS, please start posting, I would love to have an active "virtual" support group but you can't do that without others!
looking forward to finding out if anyone has been checking in around here.
 
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eagle wings
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5/19/05 11:33 AM
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Yes, I am, and I check back here every few days looking for signs of life. But I have nothing really to post....no questions, no crazy incedents lately.
My daughter is 10, and is fully included (although some things need ironing out still). I live in Israel.


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"Let GO and Let G_D"
 
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CK
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5/20/05 12:13 AM
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Hi, eagle wings. (cute name!) has your daughter always been in an inclusion class? Does she have a SIET (shadow, aide...) Hope you don't mind my questions. Do you mind sharing how the inclusion program works for you?
THanx!
 
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ImaD
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5/21/05 5:12 PM
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Hey CK. What ever happened with your quest for nutritional supplements? Have you found anything that your baby will take?I found that when my son was younger (he is now 3 1/2) he would put up with the nasty tasting stuff more- he's far too clever now, B"H. I never hid it without telling him- he just didn't really care- now he does, though. Nu. How are things going otherwise?
 
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CK
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5/23/05 10:58 PM
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Thanx for asking. So far, I have not chosen to give her nutritional supplement, (still researching????) But I'm very careful with her diet. I started buying organic chickens, free range eggs, she gets no sugar, ...let's see how long it lasts. lol! She's doing great, just started walking (20 months), she says afew words, works really hard with her therapists...she absolutely amazes me! She doesn't really sign too much, because her st doesn't like signing. but all the other therapists do...what do you think? She's going to our shul's preschool next year (3 mornings a week) with her special instructor. I'm really excited about that. Anyway, thanx for giving me the opportunity to talk, and I'd love to hear about your child, (and everyone else too!)
By the way, does anyone do any alternative healing methods to help keep their child healthy?
 
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eagle wings
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5/28/05 4:38 PM
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No, CK I don't mind at all. But bewarned- this will be LONG.....
Ricki is now 10 and is in 2nd grade (she SHOULD be at least in 3rd- wait till you hear why she isn't.)
She went to private playgroups at ages 2and 3 - didn't speak a lot (compared to classmates), but developed very well socially and picked up a lot of passive language, including all sort of "Israeli" songs and things that she would never have gotten from our "chuztnik" home. (I speak Hebrew with the kids, but don't have the real Israeli culture in many many ways.) She went on to study at a regular "3year olds school at age 4, but the manager was not really interested in having her (the placement was a bit "forced"- no other 3 year old group wanted to even give us a try...) and after 3 months I moved her to another private playgroup-I was just getting too many bad vibes from this setting. Unfortunately, the playgroup was a bit under her level. From ages 5-7 she was enroled in three successive years of preshools (for 3-5 years olds), city sponsered. The city pressured me to put her in special ed, but they did give us a try. All three of her teachers were FANTASTIC (including the one who allowed me to send her without a diaper, as I was 1-2 minutes running distance to the gan). All extra therapies were given after school, and often on our expense.
In the last year of preschool, she learned (with a private teacher and myself) all the aleph bet and nekudot including Kametz patach tzeire segol. Near the end of the year I started looking for a first grade for her, as the next year was the last one she could legally enter . Well, every frum school in the city turned us down (even tho' I would have promised an aide to be with her all day... if they would have even LISTENED...). Most even refused to meet with us. Finally, in desparation, I turned to a mizrachi school in Ramat gan (I can't imagine what transportation would have cost us, in addition to the aide...). At this time the Israeli courts were handling a court case designed to win rights to an aide also for kids with DS (and not just for those with physical or mild Learning disabilities). We had hopes that maybe SOME of our costs would be covered. The case was won, but somehow never really got implemented. In the meantime, our city refused to give us a permit to send out of town, and promised that they would find us a frum school. In the meantime the school year started, so I sent her to "first grade" with a private teacher 3 hours a day at the teachers house. And waited for the city officials to keep their promise.
Eventually we saw that the city was not moving, and since she was not in school we lost the few hours of "aide" money that had been promised for that year. (So if she would go to school, we would have to pay 5 hours (5 1/2 ) daily, rather than 3. We again appealled to the frum school system- who evaluated Rina (who by then was reading), and they agreed that a regular class was the best place for her, since they would not put her in a learning disabled class. (Fear that everyone would get labled as retarded...) They sugested Ritalin as she was definately showing signs of ADD. We wre told that soon they would find a school for her... and with tears I saw all the girls from local schools have a "siddur party", and she, who has worked so hard to read, was denied this. Finally after Pesach, we were told that it was too late in the year to place her. She missed the social miliu of a class, and I would have never done it if I had know that she would be out of school the whole year.
During the summer, the city placement committee ruled that she should go the following year to a special ed 1st grade class. We appealled the decission, and thank G-d won, much to our surprise. We were warned that we would get almost no financial help. Indeed, we only got 8 hours aide (LESS than what she had received in gan) (we paid for the rest). AGAIN the frum schools turned us down, and the city placed her in a mizrachi school. The school was positive about integrating Rina, but not experienced with fully including students with DS. In the meantime, we and 5 other pairs of parents (not all frum and several with children with autism) went to court claiming that the earlier court decission had not been implemented, and that the education board was not giving integration as a first choice to us.
Rina did fairly well in first grade, but near the end of the year several behavior problems appeared. We won our court case, which translated this year to 21 hours weekly, leaving me to pay only 10 hours a week (plus what I pay the aide on the side...)
Her behavior problems increased at the start of this year. Obviously, this did not endear her to the teachers, but the principal was willing to hang on a bit longer, especially as there was not really any special ed class suitable for her. Finely I realized that Rina was behaving bad due to :
1- Material was not being adapted for her- she was studying the exact same stuff as eveyone else
2- she was never given a break when she really was fed up in class
3- she was not being prepared in advance for the more formal classes
4- even for math, which I had asked that she be out of class for, she refused to leave, perceiving leaving the class as punishment.

I pleaded with the school to get professional outside help (at my expense) from experts in inclusion, and they refused, claiming that they knew it all. Eventually the aide and I worked out a program were she is 1/3 of the day out of class, being prepared for the harder half of the 2/3 time in-class. I adapt most of her materials. (VERY TIME CONSUMING....) Her aide adapts tests to her level, as well as some of the other materials. For this I pay her extra. Within one week of starting this program, her behavior problems decreased dramatically. She is still not an angel (has ADHD as well as the DS), and has a lot of negative adaptations to unlearn. But slowly things are getting better.
PROBLEMS- I would like to see her teachers getting better preparation. Also, the system does not encourage me to choose an aide myself, and it is really necessary for her to have an aide who will work well with her. And this still costs us all of Rina's disability allowance. So other extras come from our pockets. And worse is the amount of time I spend adapting her materials. (And I need more help from the teachers to know WHAT they will teach.)

Plus: Her reading comprehension is increasing. She knows what verbs are, a bit about Hebrew word roots, and her receptive and spoken vocabulary is pretty good. (Now we are working on sentence structure more. She is VERY independent. She has friends at school, who taught her how to jump rope last year. She is WAY above the girls in the special ed class she "should" have been placed in.
I send her once a week to a "special ed" club (with girls older than her, though) for extra social contacts, and to help her to accept the reality that she has special needs.


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"Let GO and Let G_D"
 
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oh brother!
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5/29/05 12:55 AM
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Wow! that's quite a story...so in hindsight, what would you have done? (so us newer to this wonderful world of DS, can benefit) lol! By the way, sounds like she is doing amazing!


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oh brother!
 
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eagle wings
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5/29/05 7:36 AM
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IF I had known in advance that she would be out the whole year, I suppose I would have put her in special ed, and paid for extra help for her, to keep her acedemic level uo. And then tried again the next year. But HaShem was kind to me, knew how fiercely I believe in inclusion, and let me believe the _______people in the city hall.
Once the manager of the local beis yaacov school told me that if she had a choice, she wouldn't allow in a wheelchaur bound student ( who IS in the school), as they are strapped for space. When I heard THAT I really flipped.: I mean, we are talking about Yiddushe Neshamos. They tell us that our kids have high souls, and then they refuse them admittence. I know that not every child is suited for inclusion, but....... sometimes the difference between what COULD be done and the reality of what is offered is really unbelievable. I had one school director (one of the few who agreed to meet me) tell me that kids with DS always get stuck on segol. I told her that Rina already past segol, that she knew to sound out, that now we are working on comprehension. She was so sure of what she said that she didn't even seem to believe me....Anyway, I have to work on forgiving people who never read any journals on DS, for being ignorant, for thinking that MOMS are stupid, and try to slowly work in changes which allow our kids to thrive (which in the long run would save the city money, too, but thats a different story). ( I get cursed out for stealing "aide money from learning disabled kids", when in reality her education costs the government a 10th of what she would in special ed... but the system needs to be structured to allow inclusion, and it hasn't been ---never minding that that this is theoretically the law.....am I at fault that they don't do their job?) But things are slowly changing, especially as they see several kids with DS doing not so poorly in mainstream....)(But inclusion is not something to do carelessly--- as one US principal, very pro inclusion, said: "Inclusion is something very easy to do in the wrong way...")


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"Let GO and Let G_D"
 
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g
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5/29/05 9:28 PM
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Eagle Wings,
I am very moved by your saga of fighting to get your daughter "included." While my son does not have DS, he has a neurological disorder which may make it necessary for him to have some support in a mainstream program, which I believe is a realistic option. This will really affect us soon, in the sense that early next yr., we already need to start working on what kind of class he needs for the following yr. I am very pro inclusion, if that is truly the best option for the individual child. I have a few questions about it; if you can help me by answering them, I would greatly appreciate it.
First, typically, a child with DS has a "visible disability." In most, if not all, children with DS, certain features make their syndrome obvious. My son's disability is quite obvious, though not through facial features, etc. Do you explain the disability to the other students? Would that make it better, so they KNOW, and decrease rumors?
Does your daughter get teased? How does she/ do you handle it?
How can I ensure that your child will get the most out of the inclusionary experience?
Also, can I realistically expect to continue working full time while I may (most likely) have to adapt material/ books for him?
I hope my son will not be in "no man's land"-- not "typically developing," because he is different, yet not "disabled" either, because he is very high functioning. How can I make him/ classmates feel comfortable with who he is in relation to them?
Thank you so much.
g
 
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eagle wings
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5/30/05 7:53 AM
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G, it is very hard to answer this as a lot depends on where you live and what school you send to. I live in Israel, and inclusion for people with serious difficulties is still in the "infacy" stages here. Also, if you send to public school in the US you can get a LOT of services--- but who wants public school? Also, what type of mental abilities does your son have, similar to "learning disabilities"? Is he able to sit patiently in class, or is he hyperactive/impulsive/ etc? You can answer in a private message is you prefer.
Also, keep in mind that there are TONS of materials available in English for use in inclusion, Teachers booklets, etc. Prerparing material should NOT be a big job, and theoretically your aide should do it. Unfortunately, my city will not let me hire an aide picked out entirely on my own(if they would, I would choose one who truely believes in inclusion for ALL, who has been taught to prepare adapted stuff,etc.).
Rina is generally not called names, and the school staff keeps an eye out for preventing any teasing. My daughter who went through the Beis Yaacov system has never seen teasing of kids with disabilities. I suspect that in general in a frum school, a child's classmates also help with this. Part of the aides job is to fascilitate social contacts, and teaching her charge how to make friends.
However, Rina does get stared at a lot--- much more on the street than at school, where they are used to her. We have explained the disability to her, explained why people stare, and are working at her ability not to stick her tongue out at everyone who stares. (Since much of it is not malicious- people even smile at her and she gets really peeved.
If the class will see that he is behind, will see he has an aide you must DEFINATELY INFORM then in advance. Basically you explain what type of person your child is (including things he CAN do), and how his disability affects him. And how he wants to learn and grow as best he can, which will happen in their class.


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"Let GO and Let G_D"
 
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g
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5/30/05 9:40 PM
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Thank you, eagle wings, for your reply. I live in NY, where there seems to be lots of different kinds of programs/ options-- depending on the details. Cognitively, b"H, my son seems to be within age expectancy, as well as his receptive language skills. Socially, he is approaching age expectancy. The issue is more 1) verbal- he has limited expressive verbal language- and is being trained to use an augmentative communication device with a voice output; 2) physical- pretty low muscle tone, wears leg braces, just gave up his walker-- now the issue is atypical gait, poor balance, fatigues easily, although b"H all this has improved dramatically; 3) Learning style and style of "outputting" information, which may indicate the need for modifying/ adapting instruction-- just as his verbal abilities would require this. He is a very sweet-natured child, b"H no behavioral issues, follows instructions well-- a real sweetie. Where can I get more articles on inclusion, that I'd be able to share w/ his school, teacher, etc.? Also, how/ when do you decide which parts of schooling are just NOT something you should continue to burden a child with, for example, as I think you mentioned, NOT math, or in other cases, not gemarah, not navi, etc.? WHat I mean is, how much trying do you do before saying, we'll just have to drop this?
Thanks, --g
 
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eagle wings
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5/31/05 4:53 PM
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http://www.brookespublishing.com/store/inclusion.htm


http://www.uni.edu/coe/inclusion/index.html

Are 2 adresses on inclusion. Since your child is near the level of the class mentally, you should not have trouble adapting things.

Math was easy for us to decide to pull out- the class was way beyond her level, and was very stuctured (so couldn't do individualized work in class.
In general, the idea is to choose what you WANT the child to learn, and adapt the class material to that goal. IE, as Rina is now learning MiKeitz- rather than have her learn the name pharough gave Yosef, I will have her learn what "famine" is, work on legibility of writing while copying a sentence about Yosef.


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"Let GO and Let G_D"
 
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ImaD
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6/1/05 2:33 PM
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Wow, things got busy here. wanted to reply to your query re signing. I am very much in favor, based on research we did, which was theoretical, but more importantly, based on our experience. My son is quite alert, aware of what he wants etc, but was unable to articulate his needs for a variety of reasons- health issues which required us to spend a lot more time on his physical needs and less on his speech, fluid in his ears, hypotonia which is always worse when he is not well, two languages ( he understands both very well, and can translate from one to the other so this was not a problem of comprehension, but it is known that even regular kids sometimes speak later when learning two languages at once (although to be fair my other kids spoke well at an early age). We decided to use sign in order to allow him to have a more sophisticated manner of communicating his needs. For example, "AAAH" was replaces by a sign for eat, drink, more, and later specific foods. This requires a higher degree of cognitive functionig, which he was capable of well BEFORE HE COULD SPEAK CLEARLY. Why not let him communicate? He made up signs, we made up signs, and it was a great way to let him "grow up". Now he speaks in very short sentances in two languages and sings parts of songs (latest favorite is tefilla l'ani). He still uses gestures to express himself on occasion, but again, why not let him tell me things he can't yet say clearly? I ALWAYS say the word in speech with him, say over the story he is telling or whatever he does with gestures. he rarely uses them now for any word he can say, and when he does it is together with speech. B'hatzlacha! As for alternative stuff, I have used homeopathy and massage with some success, as well as some nutritional intervention under the supervision of our pediatrician. Had a lot of success with chiropractor for ears, and breathing stuff with my other kids- but he didnt' seem to be the shaliach for this child. May you be zoche to find the right shaliach for your little malach.
kol tuv,
ImaD
 
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ernie55B
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6/30/05 9:30 PM
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Hello Eagle Wings!

I am really sorry to read about all the problems going on in your life. I also envy you for having the courage to live in Israel and having to deal with 'the system'.

But I am perplexed when you say you turned to the Mizrachi school when the"frum" schools turned you away. Pardon my ignorance, but I thought Mizrachi is a religious organization.

Would you be kind enough to clarify?

Thank You,
Ernie
 
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eagle wings
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7/2/05 7:27 PM
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I certainly did not mean that they were not religious! Sometimes the term "frum" here has more of a connotation of "chareidi" (black-hat). Originally I was looking to register her in the "chareidi" school that all the girls in our neighborhood go to.


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"Let GO and Let G_D"
 
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ernie55B
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7/3/05 8:14 AM
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This is exactly what I was afraid you meant. I think it is a sad commentary on the state of Yehadus when frum=chareidi. By that line I thinking I am not frum, being that I am not chareidi. (Maybe I should not be posting here being that this is called 'FrumSupport')

I happen to find it offensive- and I know you did not mean to be- Is it any wonder then that Moshiach is not here yet?

Ernie

P.S. It is also interesting that only the non-chareidi (frum) school cared enough about your daughter's Yiddishe Nishama to give her a chance to learn.
 
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UpsWithDown's
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7/5/05 10:49 PM
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Hi,
I wanted to know if anyone knows if it is ok to start introducing milk & yogurt i.e. dairy products into my child's diet (he is 11 mos old now ke'h. Has DS or we like to calll it Up's...)
Please let me know.
Thanks!


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*Haboteach BaHaShem chessed yesovevenu*
 
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eagle wings
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7/30/05 4:39 PM
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Ernie, I am sorry and certainly did not mean that the mizrachi are not "religious".


The chareidi school in my neighborhood is run by a woman who does not believe much in inclusion, and certainly not for children with Down S. She once accepted a student with DS, and the mainstreaming was not done well, and really was not good for the student. (The kid was just "dumped" into a regular class.) She thought I was (am) crazy, and that my child (including her neshoma) would do better in special ed. The mizrachi school had to basically accept her, due to an appeal that I made. HOWEVER, in all fairness, the principal of the school she is in is quite good,and I have been very impressed with her professionalism.
I think that soon there will be a breakthrough in chareidi schools, as those few students included DO succeed.


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"Let GO and Let G_D"
 
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eagle wings
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7/30/05 5:06 PM
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Dear Up with Downs, the best info I think available on feeding and when to go further on the feeding route is available at Disability Solutions, issue 3 vol 3. Try the link to that issue from page:

http://www.disabilitysolutions.org/news.htm

unfortunately, tonight that link was not working. If it still doesn't work when you try it, try and ask them to send you a copy. (The editor also wrote the woodbine press book on DS and nutrition, which also is VERY good....



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"Let GO and Let G_D"
 
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ernie55B
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8/1/05 8:57 AM
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Eagle Wings,

No hard feelings. Please see my private message. Hope everything improves in your life situations.

Ernie
 
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