Re: A question for everyone

May 14, 2001

I would think that it would be possible. I think the best place to go though

would be to your priest. They can perhaps modify the classes for Tara so

that she has a basic knowledge instead of the full detailed course. Just

because our kids may not have the ability to understand complex concepts does

not mean they cannot understand God, Jesus, and faith. I think they should

be entitled to celebrate and rejoice in the Lord just as we are. So you go

girl and do what you can!!

Just one mom's opinion!!!!

Hugs

May 14, 2001

Hi Gail,

As Elementary Education Coordinator at our Catholic Church, I have had the

honor of attending a Religious Education Congress in Anaheim, CA for the past

two years. This year, I happened to stop by one of the booths, " Ministering

to those with special needs. " I have a brochure from the National Catholic

Office for Persons with Disabilities, P.O. Box 29113, Washington, D.C. 20017.

To quote from one of the paragraphs related to Sacraments: " It is essential

that all forms of the liturgy be completely accessible to people with

disabilities, since these forms are the essence of the spiritual tie that

binds the Chrisitan community together. To exclude members of the parish

from these celebrations of the life of the Church, even by passive omission,

is to deny the reality of that community. Realistic provision must be made

for persons with disabilities to participate fully in the Eucharist and other

liturgical celebrations such as the Sacraments of Reconciliation,

Confirmation and Annointing of the Sick, ..... "

I also assist with our Sacramental Preparation program . Sara will receive

First Holy Communion, along with when she is in third grade.

Hope this has been helpful.

Marcia

Mom to Sara (DS) and 6 and Lucas 10

May 14, 2001

Gail: I don't think that's a silly dream at all!!! I

think what it will come down to tho is making sure

that Tara is *ready* to receive her sacraments, and

that may or may not be when is ready! The other

issue is your parish - how accepting/accomodating are

they regarding religious instruction for special needs

kids? We're very fortunate here in our Parish where

they have a " special needs " cirriculum. I actually

could have put the boys in last year when they were 3,

but I held back to see where they'd be this year (to

see if they'd fit in w/the regular 3's class or if the

special needs class would be better). I also need to

call and talk to our director of faith formation to

discuss options (I don't want the boys to be " pigeon

holed " in special needs at church any more than I want

them " pigenon holed " in school, KWIM??). Like I said

earlier, we're fortunate that our Parish is so

pro-active in this area. Thru word of mouth, I'm

finding out that not all parishes in the Dallas

dioscese are this accomodating to children w/special

needs.

Good luck!!!

Judi

__________________________________________________

May 14, 2001

Gail,

I too am Catholic, I currently plan on having Tyler receive the same

sacraments as his twin. In fact in the Washington, DC area we have

on Catholic high school that has a full inclusion program for high

school students with DS, there are currently 6-10 enrolled at the

school. In addition, there is a movement to incorporate this program

down to the elementary school. I have talked with my parish Priest

and he is willing to accept Tyler into the school once it is built.

His only concern was any special programs that he would get in public

school that he can not offer. This is taken care of here in Loudoun

county Virginia, since the program here allows me to put my son in

whatever school I want but will provide for his special needs by

sending the teachers and therapists to his school or his house after

school. The only restriction is that Tyler must attend the county

run preschool program.

Katy

mom to 4yrs and twins and Tyler(DS) 18months

May 14, 2001

Gail,

Absolutely, write to them and ask them for the Pastoral Statement of U.S.

Catholic Bishops on People With Disabilities and for any additional info they

may have, as well. Their e-mail address, if that would be an easier way to

contact them, is www.ncpd.org and their phone # is (202)529-2933.

I have a listing of a couple other resources, as well, if you want to be

overwhelmed with information: One is L'Arche Communities USA and the other

is Institute for Pastoral Initiatives, Center for Ministry with Persons with

Disabilities...Let me Know!

Marcia

Mom to Sara (DS) and 6 and Lucas 10

May 14, 2001

Well, you asked for all religions! ) I don't really know what the word

sacraments mean... but I do know MANY individuals with DS that have become

Bar and Bat Mitzvahs. To become Bar Mitzvah you must read Hebrew (an entire

portion out of the Torah and then a HafTorah portion which together would

be about 5 or 6 pages of Hebrew). All Temples do this differently, but I

have yet to see DS be an obsticle in having a Bar/Bat Mitzvah. I even know

a few Hasidic (Ultr-Orthodox) kids that became Bar Mitzvah!! It takes about

2 years for a child without learning differences to prepare for their

Bar/Bat Mitzvah... it may take a little longer for a child with DS.

I teach a fourth grade class at my Temple's religious school. The class is

fully included and I have a student who has DS (boy -- age 8). His family

has always made sure that he is fully included in the Jewish community. It

is my personal belief that if any community is to accept " our " kids with

open arms it should be the religious communities. After all, they preach

love and acceptance (most anyway)... so they should practice it! Anywho...

that is my soapbox!

Cheers!

Sara

--On Monday, May 14, 2001, 12:44 PM -0400 GVanHouten <rjvh@...>

wrote:

> With attending three First Holy Communions, and throw in two Baptism's,

> I've started to think about Tara receiving her own sacraments. As you

> all can guess I'm Catholic, but, this question is for everyone, whatever

> faith........do/can children with Ds receive the same sacraments as

> their siblings, or in our case, their twin?

> I had a vision of and Tara, in their first communion clothes,

> walking side by side in church on their 1st communion day.........I hope

> this is not just a silly dream...........can anyone comment on their own

> experiences? Thanks

> Gail..........Bobby 7, Jillian 4 1/2, and Tara{Ds} 25 months

May 14, 2001

Hey Judi! lucky you........can you elaborate on what your parish does

regarding " special " instruction for children with special needs??

I know alot of the people in my parish personally/socially who run the

religious ed program, although we do not have a " special ed " program, I

know they would be very accomadating when it came to me and Tara, hey,

maybe I would be the one to start something new?????????????

Thanks

Gail........Bobby, Jillian, and Tara

May 14, 2001

Wow Marcia, great and helpful info, can I write to that address and get

that brochure?

Big thanks!

Gail..........Bobby 7, Jillian 4 1/2, and Tara{Ds} 25 months

May 14, 2001

This is very important to me also. My girls have both made first communion, and my oldest starts her confimation classes next year. From what I understand, it can be a parish issue more than anything else. Any advice would greatly be appreciated. mom to Amy (13), Kelsey (11), Davey (DS) 15 months tomorrow, and Will 15 months tomorrow! a question for everyone With attending three First Holy Communions, and throw in two Baptism's,I've started to think about Tara receiving her own sacraments. As youall can guess I'm Catholic, but, this question is for everyone, whateverfaith........do/can children with Ds receive the same sacraments astheir siblings, or in our case, their twin?I had a vision of and Tara, in their first communion clothes,walking side by side in church on their 1st communion day.........I hopethis is not just a silly dream...........can anyone comment on their ownexperiences? ThanksGail..........Bobby 7, Jillian 4 1/2, and Tara{Ds} 25 monthshttp://DSyndrome.com/Multiples

May 10, 2011

Pretty often crawling sensations. Daily. Some days worse than others. Biting sensations off and on, but not too bad lately.

A question for everyone

How often do you get bit/feel the crawling sensations?

May 10, 2011

I've had this since Nov 2010. I don't feel bites anymore but i feel crawling

every day. It's minor most days but a few days out of the month, especially

after spraying, it intensifies, then dies down to almost nothing again. I

usually don't get more than 2 red dots a month, i've never had lesions.

>

> How often do you get bit/feel the crawling sensations?

>

May 10, 2011

I'm pretty much free of crawlings now, probably 98%. When I do feel

it, it will be just some crawling/pricking around my scalp, and not

very often. Probably two to three times a day.

However, if I return to problem areas (homes of relatives that I

infested) it can get bad again and I will feel it can last for about

a week or two, and then vanish again. But never as bad as when I

first got it. When re-infested I feel it more prominently in my

scalp, eyes, nose, eye brows, less often in arms, stomach, back,

etc. And hardly anything in my lower body.

At the beginning of my infestation it was an all day ordeal. All

day, every day, at all times of the day. I could simply do nothing

at all with my life, not even eat, sleep, or take a nap. They'd get

into anything I touched, infest every place I visited, they'd get

into every piece of clothing.. they ruined my blackberry, slowed my

computer, got into all my furniture, stained the floor with mold,

the bathroom tiles were black with fibers, I could not take a shower

without getting swimmers to bite me, I could not put my shoes on

without feeling horrible pricks in my soles, I could not walk into

specific areas of my apartment without feeling very painful pricks,

everything had to be bagged.. and on and on.

I remember looking at pigeons and feeling so sorry for them,

thinking their whole lives must be the nightmare I was living back

then. But even regular bird mites probably aren't as bad as

Morgellons. Well, I can't tell for sure, but from what I hear they

only bother at night while this was an all-day all-night ordeal.

When I wrote to my landlord about the infestation, my words to him

were "bedbugs would be a blessing compared to this" ..lol. Of

course, they never found anything and thought I was completely nuts.

Apparently nobody in my building was affected, while I was going

completely nuts with it.

I personally doubt it had to do with my immune system. It was the

transmission through the vector which got my system infected, since

I was the only one who got bitten by the strange critters. If anyone

else had gotten bitten by those spiders, my guess is they would have

contracted Morgellons as well. Nothing in my life prior to that

indicated something was wrong with my immune system, I was actually

extremely healthy. The contact with those critters marked my fate.

On 5/10/2011 6:58 PM, tsunsushi wrote:

How often do you get bit/feel the crawling sensations?

May 11, 2011

Jess,I totally agree with you regarding the vector/immunity issue. I, too, was in tip top shape prior to our infestation (birds nest). Our stories are so similar. Whenever I get down about this I try to remember where I was last year and how far I/we (my family) have come. I am having good success on anti-biotics and an anti-fungal but I am not sure those would have helped initially. God bless anyone with Morgellons. I think the government isn't responding to this crisis because we would have absolute panic if people knew how terrible this disease is. I don't see how this is going to be stopped.

On Tue, May 10, 2011 at 11:52 PM, jessnyc <helpnynow@...> wrote: