Conference moira::parenting_v3

    Mary, 
    	Please give my congratulations to your friend on the birth of her 
    grandchild.  My son is 12 1/2 months old and was born with Down
    Syndrome. 
    	Your friend and her family are going to be going thru a LOT of 
    emotions in the next few days, hopefully they will talk to eachother 
    about those feelings and ask questions of the professionals on ANYTHING
    they may be thinking. 
    	My best suggestions would be to contact the local Down Syndrome 
    Association and get in touch with the families who have been where they
    are right now, our local group has probably saved my sanity.
    	There are 2 EXCELLENT books that I recommend not only the parents 
    read but also family and friends, these books will give them a better
    understanding of Down Syndrome and the knowledge that the feelings they
    are going through are okay and normal. 
   	 The books are "Babies with Down Syndrome; A New Parent's Guide." and
    "After The Tears Fall".  I do not have the author's here at work, but 
    if you need them I can get them for you, and can even give you the
    address of where to order these books, as our local DSA, orders these
    books and gives them to new parents. 
    	One thing to remember, this child, is a child first and a child 
    with DS second.  Your friend and her family may at first concentrate on
    all the things they "think" their child won't be able to do, but you 
    must let them know that, like all children there will be areas that
    they will excel in and others they won't.  ALWAYS concentrate on the 
    things they CAN and are doing and just work on the things that are a 
    little tougher.  I won't lie and say that having a child with DS is all
    fun and games, there is a lot of work, with therapy and any health
    problems the child might have, but when I look back on the past year, 
    and all the work and learning we have had to do, and all the tears that
    I have shed, I wouldn't change one second of what I have with Shayne, 
    he has brought and continues to bring more happiness and love than I
    ever thought was possible.    
    	I could go on and on, but I think I'll save the eyes of many.  
    If you would like to talk off line please contact me,  I would be 
    more than happy to talk to you or your friend, not only can I help 
    someone, but it is wonderful therapy for myself. 
    	I am at VAXmail  NEURON::REEVES,  All-in-1, Malinda Reeves @ CXO
    and my DTN is 592-4410. 
    	Your friend is very lucky to have someone like you who wants to be
    there for her and is willing to find out how to help.  God Bless you!	

    Mary,
    
    In Framingham, there is an Early Intervention Center in which the baby
    can get services almost immediately.  I'm sure they would have lists of
    the various local support groups, of which there are many.
    
    The name of the EI center is the Middlesex Child Development Center,
    and their number is 508-620-1442.
    
    Regards,
    
    Jeanne
    

The previous version of PARENTING may have additional information, too,
or may just be nice for support.

Congratulations to your friend!

     Carol

    Thanks for the support!

    A couple in our neighborhood daughter was born with DS. It was there
    first child and the mother was 23 when she had her so no one expected
    it. Well, little Kelly had major health problems so for them the DS was
    second to making sure she survived the first month (heart and liver
    problems). 
    
    Well, Kelly is now about 8 years old and she was main-streamed last
    year and apparently doing just fine. She was over 7 years old starting 
    first grade. In talking to her mother, she said they never "babied" her
    but treated her like any other child. Her growth process might have
    been slower than another child but it all still came. Consequently,
    Kelly is a real go-getter, she is warm, she makes her own decisions
    (sometimes too many of her own decisions according to her parents), she
    has never been shut away from the world but taught to love it. These
    are qualities that any parent would love in their child!! 
    
    I know they worry about her future. Lots of support groups helped them
    in along the way and I'm sure alot of books as well. From their friends
    they said they just wanted them to think of Kelly as any other child,
    not as a child with DS. They firmly believed that she was a child
    first. It just so happened that she had some special requirements.
    Since Kelly's parents don't portray that she is "different", I honestly
    don't think that anyone in our neighborhood thinks she is at all. 
    
    Congratulations on the new addition to your friend's family and into
    your life!! 

	
	I was asked by a reader of this notes file to post the
	following essay. It is true, an accurate re-telling
	of a real experience.

	I hope it is appropriate for this note.

	Mel Regnell




         Rage

         ---

         Rage. Raging. To rage. I have not done that in years.
         I thought perhaps one grew out of it...like acne. That
         you passed some biological boundary that prevented your
         frustrations with being powerless from rising up and
         devouring whatever urges towards self-preservation that
         you possessed.

         I was wrong.

         I remember the first time I experienced rage. I was
         five, and my dog died. I have written about Bessy
         elsewhere, I do not need to talk about her death again.
         But, I raged that day at my parents' God for being
         merciless and arbitrary. Of course, my universe was ever
         so much smaller in those days; and the rage I felt was
         based on this animal's importance in it. A favored pet's
         death these days brings sorrow and a sigh of
         resignation, but no more rage.

         Then I raged when I was eleven. King Arthur/Knight in
         Shining Armor/President Kenedy's son Patrick died
         "a-bornin" as the old Scotts ballad says. I raged again
         at this God of my parents who allowed one so small and
         untried to die without hope. Again my universe, although
         stretched from the time I was five, was still small
         enough to hold in my cupped hands, and this action saw
         the sands there streaming through the cracks between my
         fingers. My anger at the useless death of infant children 
         is tempered these days by at least adult confusion rather 
         than childlike despair. The adult accepts the way of life while
         still regretting it.

         Or perhaps I just saw too many die on the 6 o'clock news
         during Viet Nam to ever react again to an anonymous
         death in the way that I did when I was eleven.

         And I raged when I was 24. Jan Mullen and I sat with her
         prize show dog and helped deliver a first litter. And
         watched her die while they still struggled from her
         womb. And watched the pups die one by one for some
         unforseeable and unpredictable reason. We fought for
         them. We pumped medicines and formula down their tiny
         throats and held them close so they could feel our heat 
         and our hearts... and still they died. Died as we held them.

         A small thing to rage over you think, the loss of a
         litter of pups? Perhaps it was. But we sat on the floor
         of the kennel covered in dried-up after-birth,
         sorrounded by heating pads and warm formula in
         eye-droppers and cried.

         And then we cleaned the place from top to bottom with
         boiling water and anticeptic and we waited for the rest
         of the dogs to die also.  We were lucky. Some didn't.
         And over mugs of tea and after much raging we came to an
         understanding. Funny, it was that understanding that my 
         Dad was trying to convey about death and life being part 
         of the same go-round; that you couldn't not embrace one and 
         not the other. Maybe we all have to reach the place
         where we see that by ourselves? I don't know.

         But, I do know that after the puppies I raged no more.

         Until this morning. This morning, at almost 40 [just a
         few fleeting weeks left], I felt rage rising up in me.
         It was a surprisingly "unsurprising" feeling. It fit
         like the glove it always had been...and left me spent
         after it had gone.

         Before anyone rushes to my side...no, noone died this
         morning...no cats or dogs or puppies or unborn children.
         No, this morning, I watched someone murder hope.

         I took Eric to the dentist. [Do all chapters in one's
         life start with such innocuous pap, I wonder?]

         When we arrived he shrugged out of his coat and hat and
         went to stand in the doorway to the reception area to
         stare at a poster. It was a wonderful poster of 100 cats
         and one mouse.

         There were angry cats, and smiling cats, and whimsical
         cats, and wiley cats, and frowsey cats, and...well, you
         get the picture. And there was one mouse. Somewhere. We
         both stood in the doorway and hunted the mouse for ten
         minutes until the hygienist came and ushered him away,
         still peering with longing over his shoulder looking for
         the mouse.

         Released, I wandered over to read a magazine, but I
         found my eyes straying every once in a while to search
         for the mouse.

         Sometime after I had been sitting, a mother and her
         daughter came in. I didn't really look at them, just
         sort of perceived their existance and knew from the
         shadow that lurked in the corners of my perfieral vision
         that the girl was looking at the cats poster. 

         I chuckled silently thinking what a creative piece of
         work that was...both the art and the hanging of it in a
         waiting room for children. Then...

         "Come away fromt there! Noone wants to trip over you all
         day!"

         The tone as much as the words jarred me from my reverie
         in which I was reading about the bones of great whales.
         It was....viscious.

         I looked up to see the daughter scurry across the
         waiting room to stand before her mother.

         "Sit down, don't just stand there."

         She sat.

         "Stand up...take you coat off. Does someone have to tell
         you everything?"

         She stood, took her coat off and folded it neatly.

         "Sit down, I said!"

         She sat.

         I was saved from immediate acts of social
         inappropriateness by Eric arriving back on the scene at
         this very instant with the hygeinist in tow to describe
         in detail how:

         "one-of-his-sealants-had-come-loose-but-had-been-replaced, 
         thank you."

         A brief flurry of typical dentist office business
         transactions followed that mercifully removed me from
         the proximity of the parent and child.

         While I stood at the desk, Eric returned to the poster.
         The little girl, who had been sitting like a statue
         beside her Mother wandered unobserved over to stand with
         him. They chatted as stranger children will to each
         other...testing the waters, outlining each's knowledge
         of the furry creatures they were looking at, then
         settling down to an organized search for the miscreant
         mouse.

         They were still avidly searching when I was done and
         ready to "move 'em up" and "head 'em out".

         "Emma Lee! Get out of that woman's way! Who said you
         could stand there? You are blocking the door!"

         I lost it. 

         I stepped in front of Emma Lee. [That was what did it,
         you see...she had a name now...she wasn't "the little
         girl" anymore...]

         "You weren't talking to me were you?"

         "Of course not, that 'girl' is in the way..."

         "But, I am the one standing in the doorway. Emma is just
         chatting with Eric here about the poster...you must have
         been talking to me, because I am the one blocking the
         doorway..."

         "She's always in the way...just let me grab her..."

         "Is Emma your daughter?"

         "Unfortunately, yes..."

         "For her, you mean?"

         "What?"

         "Emma?"

         A tiny voice answered...but eyes never looked up.

         "Yes?"

         "Have you and Eric found the mouse yet?"

         "Yes..."

         "Mom, Emma found it! See it was hiding here..."

         "Emma, it was nice to meet you...I hope we see you again
         sometime when Eric visits the dentist"

         Emma looked at me and I was rewarded with a smile. The
         eyes behind the heavy glasses sparkled with wit and
         pride with her accomplishment.

         "Bye, Eric."

         "Bye Em'...thanks for finding the mouse!"

         "People don't talk to her much...you know...the way she
         is and all....don't let her bother you..."

         "Madam, Eric and I have enjoyed meeting and talking with
         your daughter...she is polite and eager to please. You on the
         other hand exhibit neither of these qualities and
         personally I wouldn't raise so much as my voice to keep 
         you from being run down by a truck."

         The hygienist flashed me a thumbs-up and whisked Emma
         out of the way into the back room.

         "Eric, we are leaving, now!"

         That in the voice I reserve for moments when I don my
         "She-Who-Must-Be-Obeyed" hat. Eric jumped and we were
         out the door and down the sidewalk before the woman
         recovered her ability to speak.

         "Mom?"

         "What?"

         "You're not mad at me, are you?"

         "No, I am livid at that little girl's mother..."

         "Why does Emma look that way?"

         We settled into the car...pulled out into traffic.

         "She has a condition called Down's Syndrome, Eric. It
         has to do with her genes...do you remember that book you
         were reading that talked about genes?"

         "Yeah...it said they cause eye color and hair color and
         stuff like that."

         "Well, it can also cause diseases or syndromes to
         happen. And that's what Emma has."

         "What does a 'syndrome' do to you?"

         "When your genes get messed up Eric, it makes the whole
         'machine' run a bit rough. Emma has to work very hard
         probably at things you do without knowing you are even
         thinking. In some cases people with Downs' Syndrome are
         really incapacittated...but Emma seemed pretty bright.
         Her physical appearance is affected though. The eyes have some
         extra skin....and are little and closely set. The tongue
         is quite thick and large, which makes it seem to stick
         out all the time. It makes you 'look' ...welll...."

         "Dumb?"

         "Dumb. But Emma wasn't, was she?"

         "Emma found the mouse."

         "Right. Emma found the mouse. Poor Emma."

	 "Does Emma's Mom have a syndrome?"

	 "No, Emma's Mom has something much more deadly..."

	 "What's that?"

	 "Terminal bigotry."

	 "What's bigotry?"

	 "The fear and hatred of anyone and anything that is
	 different from you or what you think everyone should be."

         " I wouldn't want to have her Mother as 'my' Mother."

         "Neither would I....I didn't say that, Eric."

         "Yeah, I know...it was one of those 'private'
         conversations we have..."

         "Right."

         "You're really mad...huh?"

         "I am really mad...huh."

         "I love you."

         "I love you too."

         "Is this a good time to mention that you just drove off
         exit 10 instead of 11?"

         "Yes, I think this is a good time to tell me that...."

         We got back on the highway and found our way home and
         went about our business of the day...Eric to take his
         'ice-cube-keeper' to school for test runs; I to zip
         down the highway in yet-another-snowstorm to build
         someone's high-tech student workbook.

         I hope Emma finds her way home one of these days.

    Thanks Mel for posting your wonderfully written essay.
    
    It brought tears to my eyes the first time I read it 
    many months ago and I felt it had a lot to say to
    parents of all children.  This note seemed like a 
    good place to keep it.
    
    Jodi-
    

    I just extracted this, it's really beautiful!
    
    Thank you for sharing!
    Lyn
    

    	I just received this in the mail and thought I would share it with 
    you all.  My friend did not tell me where she copied it from, but one
    of the pages had Erma Bombeck's name on it, this is being reprinted
    without permission.  
    	NOTE: Patron Saints are like Guardian Angels that the Catholics
    believe God sends with a child. 
    
    
    				The Special Mother
    
    	Most women become mothers by accident, some by choice, a few by social
    pressures, and a couple by habit. 
    	This year, nearly 100,000 women will become mothers of handicapped
    children.  Did you ever wonder how mothers of handicapped children are
    chosen?
    	Somehow, I visualize God hovering over Earth selecting His
    instruments for propagation with great care and deliberation.  As He
    observes, He instructs His angels to make notes in a giant ledger. 
    	"Armstrong, Beth, son. Patron saint, Matthew.
    	"Forest, Marjorie, daughter. Patron saint, Cecilia.
    	"Rutledge, Carrie, twins.  Patron saint...give her Gerard.  He's
    used to profanity."
    	Finally, He passes a name to an angel and smiles, "Give her a
    handicapped child."
    	The angel is curious.  "Why this one, God? She's so happy."
    	"Exactly," smiles God.  "Could I give a handicapped child a mother
    who does not know laughter?  That would be cruel."
    	"But does she have patience?" asks the angel. 
    	"I don't want her to have too much patience, or she will drown in a
    sea of self-pity and despair.  Once the shock and resentment wear off,
    she'll handle it. 
    	"I watched her today.  She has that sense of self and independence
    that are so rare and so necessary in a mother.  You see, the child I'm
    going to give her has his own world.  She has to make it live in her
    world and that's not going to be easy."
    	"But Lord, I don't think she even believes in you."
    	God smiles.  "No matter, I can fix that.  This one is perfect.  She
    has just enough selfishness."
    	The angel gasps.  "Selfishness?  Is that a virtue?"
    	God nods.  "If she can't separate herself from the child
    occasionally, she'll never survive.  Yes, here is a woman whom I will
    bless with a child less than perfect.  She doesn't realize it yet, but
    she is to be envied. 
    	"She will never take for granted a spoken word.  She will never
    consider a step ordinary.  When her child says 'Momma' for the first
    time, she will be witness to a miracle and know it.  When she describes
    a tree or a sunset to her blind child, she will see it as few people
    ever see my creations.
    	"I will permit her to see clearly the things I see- ignorance,
    cruelty, prejudice- and allow her to rise above them.  She will never
    be alone.  I will be at her side every minute of every day of her life
    because she is doing my work as surely as she is here by my side."
    	"And what about her patron saint?" asks the angel, his pen poised
    in mid-air. 
    	God smiles.  "A mirror will suffice."  
    

    				

    I'm sorry, that is pretty, but an awful lot of mothers of mentally
    challenged kids find it more offensive than comforting.
    
    Bonnie

    I personally like .8, and if were to be rewritten from my point of
    view, which is a mother of a child who HAD a PHYSICAL birth defect, is
    give her age and an understanding husband&father, for without both I
    would never have survived the birth defect, and the multiple surgeries
    and hospitalizations it took to correct it!
    
    Lyn
    (I wasn't offended by it at all)
    

    Well I did a dir/title=downs and also a dir/title=downsyndrome and
    could not find a note refering to DownsSyndrome.  But if there is a
    note on it then I give permission to the moderators to move this to
    there. 
    
    The reason why I as asking is because a friend of mine who just went
    out on Maternity leave Last Friday 8/30 had her baby on Saturday 8/31. 
    Patrick only weighed 4 lbs 4 oz at birth.  Know her doctor came in on
    Tuesday and told her that the baby was having some minor problems and
    they would get back to her.  Well later on Tuesday the doctor returned
    and told her that her baby had Downs Syndrome with some heart problems. 
    He told her that they don't know the severity of the Downs cause the baby 
    is to small to take blood from to check.  Know this I don't agree on. 
    I have seen premie babys smaller than my friends with needles, ect
    running their poor bodies.
    
    What I want to know for her is if there are any support groups around
    the Lancaster/Leominster area.  I am sure that the hospital will give
    her all the information she needs to know, and help her out with
    consoling, ect.  But I feel so bad for her cuse she really wanted this
    baby.  She has one healthy son at home who is 3, and had a really bad
    miscarrage about a year ago.  And when she got pregnant with Patrick
    she was really excited.  So know she is sitting in the hospital in
    histerics wondering what to do.  She is so out of it that when you go
    see her all she talks about is the baby and that she can't belive that
    it happend to her, etc.
    
    I would appreciate any help that you good people can give.
    
    
    Thanks,
    
    Liz

    I'm not sure of the Lemonster area, but through AJ's many
    hospitalizations there is a support group available through UMass
    Medical Center in Worcester.
    
    Make sure to let your friend know that as the parent of a "special
    needs" child, she is entitled to Respite care as well.  This is
    basically some number of hours of free babysitting, done by people
    trained to care for "special needs" kids.  
    
    If you contact me offline I can give you  the name of the woman who
    coordinates this for Worcester County.  She herself has a Downs
    Syndrome daughter, and is a wonderful person.  (she lives in Webster)
    Also try contacting the Worcester Area Association for Retarded
    Citizens (WARC is how they'r listed in the phone book) for some
    additional help.
    
    Why arn't the social workers at the Hospital, or local VNA helping her
    more?  Worcester VNA, maternal and child health unit covers Leominster
    area too.
    
    Lyn

    Liz, 
    	My son will be 2 next month.  Shayne was born with down syndrome. 
    I could write you a TON of information in here but maybe you would
    rather talk. Let me know what method you prefer.   
    	Your friend is going through the shock of her life and if she is
    anything like me has thoughts and feelings going through her that she 
    doesn't understand or may even be ashamed of.  I would be more than 
    happy to talk to her if SHE wants. 
    
    Malinda Reeves
    DTN 523-2142, (719)260-2142

    Lynn, 
    	Not all hospitals or medical professionals are eager or qualified
    to help parents.  We were very lucky that the hospital here in Colorado
    Springs where we had Shayne at was VERY supportive and gave us lots of 
    information including putting us in touch with the local Down Syndrome 
    Association. Unfortunately, that was not the case with all the parents 
    who also gave birth at that hospital.    
    	I have found that down sydrome is very misunderstood and with
    today's medical technology and Early Intervention Programs, what was 
    true 5 or 10 years ago is NO LONGER.
     	Too many people go to the local library and find books on down
    syndrome that are very outdated and to be perfectly honest scare the H*LL 
    out of people, with just reason.  A lot of them tell you that there is
    NO HOPE for your child so it would be best for everyone concerned that
    the child be placed in an institution.  Today's studies show that in a 
    home environment these kids are thriving and doing wonderful "NORMAL"
    things.  Due to the medical advances, the life span is longer also, 
    the things they can do for heart problems is amazing!!!
     	Our local support group is in the process of putting together New
    Parent Packets, we include a letter to the parent congratulating them
    on the birth of their child and several pamphlets on organizations who
    can help them and we also include the book "Babies with Down Syndrome:
    A New Parents Guide."  It is the most up to date and realistic book we
    have found.  We are setting up meetings with the local hospitals
    to meet with the staff and give them the information we have and talk 
    to them about how to better handle interfacing with the new parent's 
    and what information is available.  We also are requested to speak to
    local schools (usually Biology or Family Living classes), I really
    enjoy this, as we get a chance to talk with kids and we bring our down 
    syndrome children with us and it is amazing the comments you hear from
    the students.  
    	My favorite thing about our support group is going and talking to
    the new parents who request a visit.  It's usually a very emotional
    time, because I relive that first day all over again, but when I talk 
    about what I went through and let them know what I felt and then you
    see the look in their eyes of relief that they aren't the only ones 
    going through this and when they tell you how relieved they are that 
    they are not alone.  I guess the biggest reason I do it, is it makes me
    feel good and it's the best therapy I can get. 
    
    Sorry so long-winded.......
    Malinda    	

     PERMISSION IS HEREBY GRANTED  TO  FORWARD OR CROSS-POST THIS MESSAGE
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     I do  NOT  read  this Conference, but was pointed to it from MEDICAL
     #1047, and I  can  provide  some pointers to some organizations that
     can be of some help.
     
     I  have  a  Sister  with  Down's  Syndrome,  and  my  Mother  fought
     throughout her life to obtain services for my Sister and others like
     her.  Now that both our Parents are deceased, I have been serving in
     the very tenuous role as an "advocate" for my Sister.
     
     In all the years that my Mother  worked  to  start  up  a  Sheltered
     Workshop, etc.   NO-ONE  ever  mentioned  the National or State Down
     Syndrome organizations!  Only  recently I accidentally stumbled upon
     these  organizations and have joined  Mass  Down  Syndrome  Congress
     (MDSC) and the National Down Syndrome Congress (NDSC).
     
     NDSC  just  had  their   National  Convention  in  Boston  on  20-22
     September (2500 attendees, next year it is in  Atlanta,  GA).  It is
     mostly geared to "young" DS and their families (0-23  yrs  old), and
     it was quite interesting.  Listening  to  and  meeting  Chris  Burke
     ("Corky" on "Life Goes On") and his  Family  was a very enlightening
     experience!!  Recommended reading:  "A Special Kind  of Hero", Chris
     Burke's  Own  Story,  Authors:    Chris  Burke and Jobeth  McDaniel,
     Doubleday, $18.00, ISBN 0-385-41645-8.
     
     Here's a list of organizations:
     
        Mass  Down  Syndrome Congress, P.O.  Box 866, Melrose, MA  02176,
        617-665-5976 (also listed as 617-749-1935).  (They do send people
        out to Parents who just gave birth to a DS child.)
        
        National Down Syndrome Congress, 1800 Dempster  St.,  Park Ridge,
        IL 60068-1146, 800-232-6372.    (They  should  be able to provide
        local contacts to anyone anywhere in USA.)
        
        National  Down  Syndrome  Society, 666 Broadway, NYC,  NY  10012,
        800-221-4602.    (I  know  nothing about this organization,  this
        reference is in Chris' book.)
        
        Association  for  Retarded  Citizens, P.O.Box 1047, Arlington, TX
        76004, 817-261-6003.
        
     Here's  a  number  of  other  organizations  listed  in  the  NDSC's
     Convention guide:
     
        The Down Syndrome Guild, P.O.  Box 821174, Dallas, TX 75382-1174,
        214-239-8771.
        
        Harvard Community Health Plan Down  Syndrome  Program, 40 Holland
        St., Somerville, MA 02144, 617-629-6308.
        
        Southern Nevada Down Syndrome Organization (no address given!)
        
        Miami  Valley  Down  Syndrome  Assn.,  1444   Beaver  Creek  Ln.,
        Kettering, OH 45429-3704, 513-294-1240.
        
        Assn.  for Children with Down Syndrome,  Inc.,  2616 Martin Ave.,
        Bellmore, NY 11710, 516-221-4700.
        
        Developmental Resource Ctr., Emory University, Atlanta, GA.
        
        Development  Evaluation  Ctr., Down Syndrome Program,  Children's
        Hospital, 300 Longwood Ave., Boston, MA 02115.
        
        The Down  Syndrome  Program  of  the  Clinical Genetics and Child
        Development  Ctr.,  Dartmouth-Hitchcock Medical Ctr., Hanover, NH
        03756.
        
        CT Down Syndrome  Congress,  Inc.,  P.O.    Box 951, Cheshire, CT
        06410, 203-250-1223.
        
        Down Syndrome Assn. of Greater Cincinnati, OH.
        
        American Assn.  on  Mental  Retardation,  1719  Kalorama Rd.  NW,
        Washington, DC 20009-2683, 800-424-3688.
        
        Bethesda Lutheran Home, 700 Hoffman  Dr.,  Watertown,  WI  53094,
        800-369-4636 X284.
        
        Down Syndrome Assn.  of West Michigan,  P.O.  Box 8703, Kentwood,
        MI 49518, 616-751-8732 (also listed as 616-956-3488).
        
        
        
        Down  Syndrome  Society  of RI, 99 Bald Hill  Rd.,  Cranston,  RI
        02920, 401-463-5751.
        
        Federation  for  Children  with  Special  Needs, 95 Berkeley St.,
        Boston,  MA  02115, 617-482-2915.  (Provides list of resources in
        your region.)
        
        Greater  Boston   ARC,  1249  Boylston  St.,  Boston,  MA  02215,
        617-266-4520.
        
        MA Dept.  of Mental Retardation, 160 No.  Washington St., Boston,
        MA 02115, 617-272-5608. (State agency.)
        
        New England Index, Shriver  Ctr.,  200  Trapelo  Rd., Waltham, MA
        02154, 617-642-0248.
        
        South Shore ARC, P.O. Box 58, No. Weymouth, MA 617-335-3023.
        
        Space Coast Early Intervention Ctr.,  2524 Palm Bay Rd.  NE, Palm
        Bay, FL 32905, 407-729-6858.
        
        Tidewater Down Syndrome Support Group, 1201 Hartford Ct., Virgina
        Beach, VA 23464, 804-495-0206.
        
        Toward Independent Living and Learning, Inc.   (TILL), East Brook
        Executive Park, 133 East St., Dedham, MA 02026, 617-329-1250.
        
        Early  Intervention Research Institute, Developmental  Ctr.,  for
        Handicapped Persons, Utah State University, Logan, UT 84322-6580.
        
        Mile High Down Syndrome Assn., 1211 S.  Williams St., Denver, CO
        80210-1823.
        
        National Assn.   for Down Syndrome, P.O.  Box 4542, Oak Brook, IL
        60522.
        
        North Shore ARC, 184 Lafayette St., Salem, MA 01970.
        
        Child Development Ctr.,  Brown University School of Medicine, 593
        Eddy St., Providence, RI 02903.
        
        NH UAP, Office for  Training  &  Education Invocations, 10 Ferry
        St., Unit 14, Concord, NH 03301.
        
        Down Syndrome Assn. of Atlanta, Atlanta, GA.
        
        Downs    Parents  of  Jackson,  P.O.    Box  12598,  Jackson,  MS
        39236-2598.
        
        Northern  New  England Down Syndrome Congress, P.O.    Box  2314,
        Concord, NH 03302-2314.
        
        ARC/Cape  Cod,  870  County  Rd., Box 1070, Pocasset,  MA  02559,
        617-564-4000, 563-2200.
        
        Mid-Hudson  Valley  Down    Syndrome    Congress,   914-658-8419,
        914-226-5220.
        
        Down Syndrome Assn. of Memphis.
        
        Parents  Regional  Outreach  for  Understanding Downs, P.O.   Box
        5822,  Orange, CA 92667-0822, 714-974-6419.  (Hosts of 1993  NDSC
        Convention in Anaheim, CA.)
        
        Alaska  Chapter NDSC, HC 83 Box 1706, Eagle River, Alaska  99577,
        907-694-2545.
        
        Down  Syndrome  Today,  Inc.,  481  Baker Rd., Freedom, PA 15042,
        412-728-2896.
        
        Down Syndrome  Parent  Group  of  Western  NY, Inc., Erie Co.  --
        716-832-9334, Niagra Co. -- 716-731-4210.
        
        Down Syndrome Assn.  of Northwest Indiana, 2927 Jewett, Highland,
        IN 46322.
        
        Down Home Ranch, Inc., Rt. 4 Box 292C, Elgin, TX 78621.
        
        NY League for Early  Learning,  Inc.,  Admin.   Offices, 7420 4th
        Ave., Brooklyn, NY, 718-745-6006.   (Also  locations in the Bronx
        and Columbia University.)
        
        My apologies for any typos, it  was  a  lot  longer  list  than I
        expected. I hope that this is a help to somebody. 

    Just an update to let you all know that my friend returned to work
    yesterday (11/18) from her maternity leave.  She was lucky and her
    doctor extended her leave for 3 more weeks so she was out a total of 11
    weeks.  
    
    I met her yesterday in the hall here at work and we stood and talked
    for a good 10 minutes.  I asked her how Patrick was doing and she said
    that his over all health was great and that the cardioligist was not
    going to treat him for the hole in his heart because is wasn't that
    serious and it would heal it self.  She mentioned that he had a cold
    and she had to take him back to the doctor cause the medication they
    put him on wasn't helping any.  She said that he eats fine and his an
    adorable child.  I havn't seen pictrues of him yet but by the way she
    explained him to me he sound adorable.   My friend works part time and
    her husband works 3 days a week as a guard at and MCI prison.  So while
    she is working her husband watchs's Patrick 2 days and her mom watches
    him the other 3 days.  They have exceptied him into their world and all
    love him dearly.  Like I told her in the card that I sent her.  Patrick
    was put on this earth to make it a better place to live.
    
    Liz 

The following note is being entered for a member of the PARENTING
community who wishes to remain anonymous at this time.

Carol Stolicny, PARENTING co-mod

------------------------------------------------------------------------------
I need to make a decision now about whether or not to have an amnio done
or not.  My doctor tells me that the results of the AFP test in combination
with my age (34) indicate that the risk of having a baby with Down's
Syndrome is increased.

My first reaction was that I still don't want the test due to the risk of
miscarriage and no matter what the results I would still continue with the
pregnancy anyways.

However, after thinking about it I'm wondering if there is anything that I
should be doing now to prepare if the baby does have Down's Syndrome.  For
example, would I be able to return to work or does a Down's baby require
extra attention than a normal baby making it necessary for me to be home?

Are there things that can be done prior to the birth if any physical defects
are noted along with the Down's?  Someone told me surgery can be done before
the baby is born?

Does a child with Down's Syndrome require special schooling and care that
might make us consider moving to a town that would offer these things?

Lastly, is there time to make these arrangements after the baby is born or
should we be doing something now?  In other words, is the risk of miscarriage
worth knowing is there is a problem in advance?

If anyone has a child with Down's or knows of anyone, I'd appreciate the
input.

Thanks,

    
    We went through the same turmoil during my pregnancy with Christopher
    (now, healthy and 2yr + 3mos).  My AFP test was not in the "normal" range
    and the Dr.'s office suggested Amnio.  For your exact reasons, fear of
    miscarriage and termination out of the question, I decided not to have 
    one.  Instead, they suggested a Level 2 Ultrasound.  It was an out of plan
    referral to a Boston radiologist, associated with Brigham and Womens.
    
    This type of Ultrasound is much more precise than the usual. They were
    able to clearly see every organ and each vertebrae of the spine.  They
    also checked out his heart.  I knew it was not as exact as an amnio.,
    but it was the next best, as far as I was concerned.
    
    If I'm not mistaken, Down's babies characteristically have heart
    troubles.  Wouldn't they be able to see something with this type of 
    ultrasound?  It seems logical to me, but I'm not a Doctor.  It may be 
    worth asking about....
    
    Good luck and try to remain optimistic, afterall, the AFP is not the 
    most accurate screening test in the world! 

Hi,

When I was pregnant, my AFP test was also abnormal (I am and was 34 years old as
well).  I was told the same thing as you.  My husband and I decided to have the
amnio done.  The risk of miscarriage from the amnio was less than 1%, and I 
couldn't imagine being as upset as I was for the rest of my pregnancy, wondering
if my baby was okay or not.  The amnio went fine.  The results were completely
normal.  Today I have a very healthy, happy, normal, 8-month-old baby.  For me,
having the amnio was the right decision.  Its a very personal thing.  I'm glad
I did it.

Kathy

    I'm 33 and my doctor suggested an amnio before I had even taken the
    AFP.  I probably wouldn't have even thought about it if he hadn't said
    anything, but since he did it was something I didn't want to worry
    about for the rest of my pregnancy.  If there was anything they could
    find out that could raise my awareness level and achieve the best
    possible pregnancy, I wanted to know.  Also if there was anything that
    needed fixing that could be done in-utero, we wanted to know that also.
    
    As the previous noter mentioned there is less than 1% risk of
    miscarriage or infection.  We went to a prenatal doctor who performs
    them all the time instead of having my OB/GYN do the procedure.  It
    was quick and painless and the anxiety over having it done was the
    worse part for me.
    
    We just got our results back and they looked great and I feel like I
    can breath a little bit easier..until the next worry hurdle appears!
    
    ...Lori

    Lori, was the amnio suggested in your case because of age, or
    because of some other concern? I this is the first I hear of 
    someone being recommended for amnio at 33.....
    
    Monica
    (whose 33rd birthday is in 2 weeks....)

    Hi Monica,
    
    I think it was suggested because I was as they say "Sitting on the
    Fence"...33 now and 34 when the baby is born.
    
    Since we conceived on our second IVF cycle, I went back and asked my
    infertility specialist what he thought of this.  He said that his wife
    was 31 and they decided to go ahead and do an amnio, because there is
    so much they can learn from the test to help a pregnancy along if
    needed.
    
    As I said before, if it wasn't mentioned I probably would have never
    thought about it...but once he brought it up I couldn't seem to get
    it out of my brain and knew that it would be best to proceed and have
    one less thing to stress on!
    
    ...Lori

    My OB suggested my Amnio for several factors, first I was over 35, had
    had an inutero death previously, and to rule out TWO major defects, not
    only Downs, but Spina Bifida, plus as I realized after he was born, it
    was a good "tracing" to see if any other diseases were present.  Not
    sure what exactly though. My OB suggested I not do an AFP since the
    amnio would tell the same things.
    
    After AJ was born with the imperforate Anus and the kidney and bladder
    defects, the geneticist(sp?) was called in again.  He stopped by the
    NICU with the tracings in hand, they for some reason thought the birth
    defects may have been a spina bifida that had gone undetected.  Knowing
    that as a possibility, plus it was suggested again during the spinal
    surger last week that it still may have been the case, I sort of wonder
    what I really would have done if the Spina Bifida (if it really ever
    was) had been detected.  Good Lord, I had the potential for doing away
    with my son with a surgically correctable birth defect, and that really 
    sends chills down my spine!
    
    Lyn

    I guess that when the amnio was suggested that I too had mixed emotions
    regarding having to face a decision of terminating the pregnancy if any
    serious gentic defects were found.
    
    But on the other hand, I also looked at the positive side of what could
    be learned from the test and how far medical technology has come these
    days.  Knowing that many defects can be corrected inutero and also
    being able to do the best during your prenancy if there were special
    needs.  If you know that you would not terminate a pregnancy no matter
    what, you can still proceed with an amnio and atleast be a little bit
    more prepared in educating yourself and working thru your feelings.
    
    I know for myself that when I got pregnant after trying so long that
    the thought of terminating a pregnancy was a terrible thing.  In my
    dreams I believed that once I was pregnant it would be nothing but 9
    months of joyous bliss...and 98% of the time it has been.  The other
    2% has involved bleeding in the first trimester...dealing with the
    decision of an amnio..and I am sure there will be other adventures
    to face.  With the amnio it wasn't easy to have discussions about
    whether we were emotionally or financially able to handle a child
    with a serious handicap...but I think by honestly sharing those
    feelings between my husband and myself just brought us closer.
    
    For us it was a personal choice of doing what felt right for the both
    of us and in turn believing that decision would be the best for our
    baby.
    
    ...Lori

>                                                                  In my
>    dreams I believed that once I was pregnant it would be nothing but 9
>    months of joyous bliss...and 98% of the time it has been.

From what I've been told you're very fortunate.  Many couples who get
pregnant after extensive infertility treatments are very anxious that
something will go wrong.  This often carries over after birth, so that
formerly infertile parents have to be careful not to be over-protective.

    During the first trimester while I was still under my infertility
    doctor's care (they don't release you to the OB until 12 weeks), I
    was more anxious about something going wrong.  I think its natural
    because you are being monitored so much more closely then a low risk
    pregnancy that was conceived naturally.  When you go in once a week
    for blood and ultrasounds (from week 5 thru 12) you almost tend to
    know to much.  Its much like the procedure that helped get you 
    pregnant.  You learn so much about the drugs, the blood counts, the
    risks and benefits...that the questions never cease to accumulate it
    your brain.
    
    But once you go to your OB your like any other pregnant person...which
    is the goal of the infertility specialist.  He doesn't want you to
    feel like you need to be overconcerned or be treated on the fragile
    side just because you conceived with IVF, Gift, etc.  Believe me, your
    OB is the first one that will dispell the myth that your are special.
    Its a rough transition being treated and monitored so closely from
    the infertility doctor...then you see your OB...walk into his office,
    pee in a cup... jump on a scale... drop your drawers half way to hear 
    fetal heartbeat..step in his office for a Q & A, and you are out the
    door to solo for a month until your next appointment.  After a few
    months of that you start to feel like this pregnancy is going to be
    just fine.
    
    As far as being an overprotective parent just because I conceived via
    IVF....for me I would have to say know.  I would say yes to the
    feelings of how blessed we are to have this child coming into our 
    lives and each and everyday I will be grateful to God for that.
    
    ...Lori

    My advice would be that if you're undecided, try to get even more
    information.  Find out what specific problems might be of concern
    in your case, what can be done from a medical standpoint if they
    do detect a problem, what the followup action will be, whether
    there are alternative tests, what the degree of accuracy of the
    amnio and the alternatives are, what the risks of an undetected
    problem are. 
    
    For instance, there's little medical risk at birth for a Down
    syndrome baby -- they're generally healthy unless they're very
    severely handicapped.  Abortion wasn't an option for us, so I
    decided I didn't want it to detect Down syndrome -- I would just
    spend the next several months worrying, not coping or planning or
    coming to terms.  (I know myself :) )  When and if it happened, I
    would cope just fine. 
    
    My OB indicated that there was little if anything that could be
    done in utero for most of the problems an amnio can detect, except
    decide whether to terminate the pregnancy, which wasn't an option
    for us.  In the 2+ years since then that may have changed. 
    
    When we asked about what specifically they could treat, and how,
    at birth, he admitted that almost all of the problems serious
    enough to require neonatal intensive care were as likely to be
    detected by ultrasound as by the amnio, with no increase of risk. 
    If he suspected problems, or we were worried, there's a detailed
    ultrasound that was mentioned by another noter.  Again, the
    testing may have improved in the last two years, they're making
    such rapid progress, so you might want to specifically ask what
    they'd need to do at birth for a baby with the problems you're
    worried about. 
    
    The OB also pointed out that the amnio indicates the presence of a
    problem, not the severity of it.  For instance, spina bifida can
    be fatal, or extremely handicapping, or minor.  If the test came
    back positive, the next thing would have been . . . the ultrasound
    we were going to do anyway. 
    
    The amnio is important if you have reason to suspect inherited
    genetic problems, which are often hidden (Tay-Sachs comes to
    mind), but we don't have any of the detectable hereditary problems
    in either family, so the doctor agreed that even though I was 35,
    there wasn't a good reason for the amnio.  
    
    --bonnie

As I've written elsewhere in here, when we had our last, 3 1/2 years ago,
we went through the trauma of the amnio, and our attitudes were much like
that of Bonnie ... we weren't prepared to terminate ... genetic counselling
revealled nothing hereditary that we needed to worry about.  Still, it
didn't stop the  amnio doc. saying, without looking at anything other than
my wife's age ... "when shall we book the amnio".  So we booked it, called
our own Doc, explained our concerns ... he concurred ... we cancelled.

Basically, even if there was a genetic problem detected, the amount of
preparation we could have done was negligible ... with two kids already
we were rushed off our feet, and we'd spend the next n months worried.

We'd had enough worry with the previous child because of a positive medical
test for something that turned out to have no real significance but it
didn't stop the OB/gyn driving us crazy with blood test after blood test!
When we finally pinned a doctor down after the birth he said the chances
of a problem from the detected anti-body were almost non-existant.

So we weren't prepared to have to worry about some other problem.

So, unless you *really* must know or really are prepared to terminate
then it may not be worth the worry.

Stuart

    	I realize this has nothing to do with the decision of amnio's, but
    since this is the "Info on Down syndrome note"  I wanted to share this 
    with you all. 
    	Shayne turned 2 in October, right after he was born, my sister and
    parents tried to explain to my sister's 3 children (at that time) 3,4 &
    5 years old that Shayne had Down syndrome.  They told the kids that
    Shayne was "Special".  Well to kids that age, special has an entirely
    different meaning.
    	Shortly before we got to bring Shayne home from the hospital, Bryce
    my 4 year old nephew came to talk to me.  He asked me why God gave me 
    a special baby, I told him that ALL babies are special and that
    sometimes there are babies that are born who need just a little extra
    help.  Bryce's next question was, "but Auntie M, why didn't God make 
    me special?"  At that point, I realized that the kids thought that 
    Shayne was better than them, so I called my family and the kids
    together.  I told the kids that Shayne was special because he was MY
    baby just like they were special because they were my sister's babies, 
    but that Shayne was still in the hospital because he was sick and they 
    were going to keep him there until he was better.  I also told them
    that Shayne was born with something called Down syndrome and what that 
    meant was that Shayne would have a little harder time learning but I
    was counting on them to teach him all the things they already knew
    since they were big kids now they could show him the ropes.  When we 
    brought Shayne home and to this day, there is never a minute that they 
    spend together that I don't receive a full report on what they taught 
    Shayne to do and every noise or gesture that he makes.  
    	I have always wondered if that was the right explanation to them.
    	A few weeks ago, I took my sister and the kids out to eat, we were
    at one of those salad bar places.  Shayne, as usual started flirting
    with the lady across from our table. I left the table and when
    I came back, my sister was blushing.  The lady had come over to our table 
    and told my sister that Shayne was cute and special, my sister not catching
    on at first said, "Yes, he's my only nephew or neice and I love him to
    death," the lady continued telling my sister that she only knew he was
    special because her brother was special.  My sister still wasn't
    catching on until my neice who is now 5, in the loudest voice she could 
    possibly find, said "He's not special, he just has Down syndrome!!" 
    and my 8 year old nephew had to add his two cents with, " yeah, but
    don't worry we are teaching him everything he needs to know."
    	From the mouths of babes..................... 	

Great kids.  :-)

        Carol

    That's great!
    
    --b
    

    what a wonder way kids have with words!
    
    Lyn

    Once kids actually understand something like this, they have far
    fewer problems with it than we as adults ever do ...
    
    It's amazing ...
    
    stuart