Re: Would like some input (long)

[Guest guest]

In a message dated 2/15/03 8:50:50 AM Pacific Standard Time,

johndeespicer@... writes:

> Apparently, this is not working. The new mom is now saying she will

> probably put the baby up for adoption. The mom who took the pictures

> over is saying that she would like to adopt the baby, although she

> has not told the new mom this.

>

> We were all in a big uproar yesterday. We would all like to see the

> new mom keep the baby AND be happy with her. However, we discussed

> just how long it took us to adjust to the news with our own kids and

> fall in love with our babies (not very long for any of us). We

> wondered if you didn't think you could love a DS baby by the time she

> was 1 month old, would you ever? The mom who wants to adopt the baby

> is afraid if she mentions it to the new mom, then would the new mom

> be pushed into a decision she would later regret? The dad and

> grandma, BTW, are apparently supporting the mom's decision, whatever

> it may be.

>

Each of us has a different thing that triggers our love for a child with DS.

Plus dealing with the sorrow that comes with finding out the child you have

is not the one you envisioned can be overwhelming. Give her a copy of the

book " Babies with Down Syndrome " (Woodbine House). It has an excellent

description in the beginning about how you have to grieve for the " missing

child " as if it had died and then it takes time to love this new child. You

had nine months of pregnancy to anticipate and fall in love with the child

you thought you were going to have...it may take just as long to fall in love

with this " other " baby. I have a friend who told me it wasn't until her son

went into heart surgery at 7 months that she realized how much she had grown

to love and care for her son. She became on of the fiercest advocates I

know.

It's OK to let the mom discuss adoption as an option. Discussing the

possibility will help her deal with what she is feeling - overwhelmed and

without options.... esp if the rest of the family is not supportive.

When my daughter was a few months old I told the hospital where she was born

that I would be interested in being a mentor to a new DS parent. I was

scarely prepared for what I got - the mom was Iranian-Jewish with 4 older

children. She told me that in her culture that having a child with a genetic

defect seriously harms the other children's ability to get married. She

couldn't discuss it with anyone in her family or community outside her

husband. I totally understood why she was considering giving up her child

for adoption. But in the end she didn't - her daughter needed heart surgery

and she came up with a plan to tell everyone that her daughter contracted

meningitis during surgery to account for her mental retardation. She

actively proceeded with making sure her child got into therapy programs and

as I undertood it from her case worker at the Regional Center it was one of

those things that everyone knew but didn't discuss. What a tough situation -

and what a courageous mom!

- Becky

she

[Guest guest]

This mom is still grieving for the baby that was her dream. It's very

important that she work through this. She definitely needs help and support.

Your local department of developmental disabilities (EI) should have a

grief counselor that can work with her.

I know of several families who have worked with one here. I know of one mom,

who placed her 6 month old baby in my arms and told me, " I just can't do

this. I can't be a parent to a child like this. " I cried with her, and set

her up with a therapist and she and her husband are now the most involved,

loving, proud, supportive parents of their 8 yr old.

Everyone reacts in a different way and on a different timeline. There are

stages in our grief and we sometimes get stuck in certain stages and breeze

through others. Even adoptive parents go through the grief stages... even

tho you KNOW you are adopting a child with sp needs, you still hurt when you

hear the remarks or see your child not developing on target.

Find the counselor and give her the number. Involve her in playdates with

and without her sp needs child. Let her see that you also have sad moments

as you parent....and let her see the joys. T

[Guest guest]

Dreams

Once there was a child

growing in a womb.

Everyone loved this baby,

and decorated the room.

Anticipation shimmered,

in this atmosphere of love,

gifts were graciously given

for this little gift from above.

And then the happy moment,

when this family member was born.

The parents wept in anguish,

The grandparents stared forlorn.

What happened to our perfect child,

the one we all cared for?

Who is this injured stranger

sleeping in the nursery floor?

How do you expect us to love him

he's not a normal child?

I don't know how to raise him

in this life that we have styled.

Yet they took this broken baby,

to their home and in their heart...

and raised this special person

and taught him with an art.

He didn't fit their dreams,

so they changed their dreams for him.

And learned that they could do it...

And with him they would win.

They raised a happy child,

and shared him for all to see.

This child is not perfect,

but he's as good as you and me!

[Guest guest]

Hi,

Not sure I ever shared this story cause it is hard for me. Anyway, I fell in

love with the minute she was born and they put her on my belly - the

past 20 hours of labor suddenly disappeared and all i felt was pure joy.

The part that I havent shared is that was not dx with DS for at least

9 months - that is another story - but the point is that I was already so in

love with her from the moment she was born.

I also blame God sometimes saying that it was all in the plan of letting us

fall totally in love with first...

~ Mom to 12 DS and Diabetes Type 1 and 8 NY

[Guest guest]

I knew 2 months before Karrie was born that she had ds. I thought I had

adjusted to it before her birth.

When Karrie was born and I looked into her little face immediately after her

birth, I thought I had adjusted to it.

When Karrie had her heart surgery, kidney failure and respitory problems, I

thought I had adjusted to her having ds.

I knew I loved her...she was my baby.

But one day when she was about 13 months old, we were in Wal-Mart. Karrie

signed Mc's and let out the most infectious giggle I had ever heard.

That was the day I fell in love with her and opened my heart to her.

I had been afraid I would lose her. I had to guard my heart, because I knew

this was one loss I would never recover from. I was laughing with her, with

tears streaming down my face. I was overcome with all that love I had been

holding back in my heart. I still remember the feeling of my heart opening

up to her!

Maybe this mom is feeling that she is afraid to love the baby??

Just a thought,

Sue mom to Kate 13 and Karrie 6 w/ds--two little girls who are so very loved

by their mommy

[Guest guest]

Sue,

Thanks...that is a good insight, not to mention a beautifully written one.

I hope you're right. I am really hoping this little baby will do something,

look a certain way, whatever...that will remind the mom of her other two

babies and that love will come pouring out for this child.

I know what you mean about a loss from which you can't recover...Emma had to

have the front half of her skull reconstructed last fall and for the week

preceding the surgery I was just sick with fear of losing her. I still

wonder if I could breathe without her in my life, and I don't know how I

survived without her for so long.

Hope your nose gets better soon, btw!

Jill

Re: Would like some input (long)

> I knew 2 months before Karrie was born that she had ds. I thought I had

> adjusted to it before her birth.

> When Karrie was born and I looked into her little face immediately after

her

> birth, I thought I had adjusted to it.

> When Karrie had her heart surgery, kidney failure and respitory problems,

I

> thought I had adjusted to her having ds.

> I knew I loved her...she was my baby.

> But one day when she was about 13 months old, we were in Wal-Mart. Karrie

> signed Mc's and let out the most infectious giggle I had ever heard.

> That was the day I fell in love with her and opened my heart to her.

> I had been afraid I would lose her. I had to guard my heart, because I

knew

> this was one loss I would never recover from. I was laughing with her,

with

> tears streaming down my face. I was overcome with all that love I had been

> holding back in my heart. I still remember the feeling of my heart opening

> up to her!

> Maybe this mom is feeling that she is afraid to love the baby??

> Just a thought,

> Sue mom to Kate 13 and Karrie 6 w/ds--two little girls who are so very

loved

> by their mommy

>

[Guest guest]

Jill,

This mom needs an adoption counselor/social worker and not a DS support group.

The one mom can mention that she would be interested if she chooses parental

placement. Still the court would require a home study and it's going to be

expensive.

Adoption through an agency would not be a bad idea. Subsidy would be available

and this child may need assistance in the future that you can't get through

other funding sources.

Adoption is not a bad option! It takes love for a birthmom to take her baby

home and then make an adoption plan. Still, she really could benefit from

adoption services.

Would like some input (long)

I went to my local DS support group meeting yesterday afternoon and

found out that I had missed something big at the last meeting two

weeks ago.

One of our moms had somehow hooked up with a new mom of a DS baby

girl. The baby is now about 1 month old. The new mom showed up with

her mom (baby's grandma) and the baby at the last meeting. This new

mom is not adjusting at all to the new baby, by her own account. The

mom and grandma said they just can't see past the DS to the child and

keep " picking her apart. " The mom has two boys, 3 and 5 yrs old.

Both parents have some unspecified health issues, as does the oldest

boy, and apparently they just can't handle this news. Two of the

moms in our support group have been talking with her to give her good

information, and one mom took pictures of her 6 yr old DS daughter to

the new mom in an attempt to show her that DS kids are like other

kids.

Apparently, this is not working. The new mom is now saying she will

probably put the baby up for adoption. The mom who took the pictures

over is saying that she would like to adopt the baby, although she

has not told the new mom this.

We were all in a big uproar yesterday. We would all like to see the

new mom keep the baby AND be happy with her. However, we discussed

just how long it took us to adjust to the news with our own kids and

fall in love with our babies (not very long for any of us). We

wondered if you didn't think you could love a DS baby by the time she

was 1 month old, would you ever? The mom who wants to adopt the baby

is afraid if she mentions it to the new mom, then would the new mom

be pushed into a decision she would later regret? The dad and

grandma, BTW, are apparently supporting the mom's decision, whatever

it may be.

What about the baby? I don't want to think she's staying in a home

where she is not valued, but I also know that happens to typical

kids, too. I also worry about the baby as a child or teenager,

figuring out that the mom didn't keep her mainly because of the DS.

This mom COULD raise her, and is raising two other kids, but is

rejecting this baby only because of the DS.

Should my friend approach the new mom about adopting the baby? If

this new mom really does settle on adoption, what do they do then,

find an adoption attorney? Find an agency? Who keeps the baby in the

interim?

As so many of you on this list have adopted DS kids, I would love

your input. Even though I am not directly involved, my local support

group really supports each other and I would not want any of us

blundering into a situation and making it worse.

Thank you so much for reading this!

Sincerely,

Jill (Mom to Luke, , Song, , & Emma--DS; wife to )

Deep in the heart of Texas

[Guest guest]

Hi!

I knew one family where it took the Mom well over a year to fall in love

with her child. Luckily the Dad and Grandparents fell in love with the

child early on and they helped to fill that void.

I think a support group has to be just that. As well intentioned as the Mom

is who would like to adopt the baby, there can't be hidden agendas or the

welfare and purpose of the entire group is threatened. If the biological

Mother comes to the conclusion that adoption is an option she wishes to

explore then fine it would be appropriate for the interested Mom to voice

her interest but not before.

jmho

Take Care All!

Kent Moreno

Rt 1 Box 128-X

Burlington, WV 26710

knm@...

[Guest guest]

I think made some good points. Adding to what she had to say, maybe

the new Mom could also use some counseling to deal with the situation.

Kent Moreno

Rt 1 Box 128-X

Burlington, WV 26710

knm@...

[Guest guest]

Ohmigosh, !!! Did you write that poem? It is fantastic!!

Sue mom to Kate 13 and Karrie 6 w/ds

[Guest guest]

The night I got the diagnosis, I was alone. I called my mom who came over

immediately. She let me cry for awhile. Then she asked, " What has changed?

Didn't you plan to care for this baby? Didn't you plan to love this baby?

Then what has changed? Your daughter might have a disability, but she will

only be disabled if you make her that way. " I know that everything had

changed, but I really needed to hear it " boiled down " like that.

BTW, my mom had a massive stroke giving birth to me. She was 24 years old.

She has spent most of her life with the use of only one arm, limps badly,

and has difficulty with her speech.

Sue mom to Kate 13 and Karrie 6 w/ds

[Guest guest]

You mother is one very wise woman!

Bev

Re: Would like some input (long)

The night I got the diagnosis, I was alone. I called my mom who came over

immediately. She let me cry for awhile. Then she asked, " What has changed?

Didn't you plan to care for this baby? Didn't you plan to love this baby?

Then what has changed? Your daughter might have a disability, but she will

only be disabled if you make her that way. " I know that everything had

changed, but I really needed to hear it " boiled down " like that.

BTW, my mom had a massive stroke giving birth to me. She was 24 years old.

She has spent most of her life with the use of only one arm, limps badly,

and has difficulty with her speech.

Sue mom to Kate 13 and Karrie 6 w/ds

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

Ok...you all have me sobbing like a baby here this morning.

I agree that the support group should offer support first, as you can

damage it by hidden agendas etc. as KEnt and CIndy said.

was our first born. I sorta know what people mean about the

grief, but Trent and i didn't really grieve for BJ at the time of his

birth. We had no tests or anything, so we found out after he was born

about the Downs. I had to have an emergency c-section die to severe

pre-eclampisa ( the one with the fits.,,,I forget if if it excelmpsia or

exclampsia....) ( which the lovely lovely lady dr didn't diagnosed till

many hr. later, ut that too is another story ) and toxemia. I was

lying in the hospital bed it the high dependency ward with both sides of

the bed up, 3 drips in my arms, and the dr rocks on up with 2 assistants

and Trent. The dr is holding BJ. He places BJ in my arms and says " Isn't

he a beautiful little baby? " I obviously nodded......He then holds my

hand securely and says " He has Down Syndrome " I looked up at him and he

nodded. I looked up at trent and he also nodded. He said something

about blood tests, but I wasn't really hearing him. I was stroking BJ's

tiny little face ( He was 6 pound 6 ounces at 3.5 weeks early) thinking,

this kid is going to live till he is 30 and my baby will never have his

own babies, and also that you have to be careful what you wish for(

another story, but many years before I had asked God for a downs

baby..........) . Trent and I didn't think about ourselves till way

later. My mother in law tells me that all in our family sit down a nd

cried privately, then picked themselves up to rally around us. My mil

knew a lady who had a ds child, so she gathered all the info re early

intervention etc. for us.

I dont know that I had any hopes or thoughts about what my baby would be

like......I have always just loved BJ for being BJ. I get sad when

people say horrid things, but I have been lucky, in that I haven't had

many ignorant people in our life. My neighbor dotes on BJ and lets him

get away with murder- lets BJ do what her grand kids cant....and I try

not to let her do that, but she just loves NJ to bits............I got

upset when people looked at me weird at the bank one day while BJ

continued to head butt me, and I asked a lady once of she wanted to take

BJ home after she said she was going to call DOCS because I smacked his

hand in public..........BUt we have been lucky there.

I got the shock of my life to have a normal kid. Natasha just blows my

mind away. Now I am sorta scared, as this jellybean may be " normal "

too......I have more worries about my " normal " kids than I do BJ

Weird huh?? My mum and I didn't really get along for heaps of different

reasons, and I worry that my kids will be the same.....but hey...that is

fr another thread on another year

If you got his far...THANKS I hope I helped

-

Leis.... Aussie mum to 5 ,Natasha 1 and Jellybean due Oct 03

Whenever I'm caught between two evils, I take the one I've never tried.

Mae West (1892 - 1980)

[Guest guest]

It was an awful blow when we were told about . Of course the

doctor used the M word and said he would probably never walk or talk or

anything. But I already loved him and I was over all that within 24 hours

or less. The only thing worse that I could imagine would be losing him. At

any point. I have been asked what got us through it and we found it was the

baby himself. He was just so full of love, he smiled before he was a week

old, and just reached out to us in so many ways. How could we not have loved

him?

Jessie, mom of , 38, and the light of my life.

[Guest guest]

I think made some good points. Adding to what she had to say, maybe

the new Mom could also use some counseling to deal with the situation.

An adoption worker should be trained to deal with this type of situation.

However, any birth parent who is grieving (whether due to adoption or TPR) needs

to be in counseling, too. The adoption worker should know who the good

therapists are. Our local mental health does not have anyone who specializes in

adoption issues, so I refer to an agency that does.

[Guest guest]

I just remembered this. I worked with some parents who seemed very

resentful of their pediatrician and not too sure about the baby. Never

really rejecting, but sure that he would go to college and all that. Later I

found out they had the same ped. we did and he told me the story. it seems

the father had 2 uncles who were pediatricians and this baby was born with

duodenal atresia. The uncles, and the parents, didn't want to have the

surgery done--the baby would have died-- but our pediatrician said the

surgery was going to be done no matter what he had to do. And it was. But

the parents resented him for it. I think later they were glad but there was

still some resentment there. And I'm sure the kid didn't go to college, but

that was their way of coping. Believing that he would. Jessie

[Guest guest]

It amazes me in all the many different stories we have. God knew just what

each of us needed to get us through the diagnosis. I wonder how I would have

reacted if I had gotten the news at some different point in time...

That had to be hard, to get the dx when was 9 mos old! Did you

suspect anything?

Sue mom to Kate 13 and Karrie 6 w/ds

[Guest guest]

I always tell people that Katelyn has been more difficult to deal with than

Karrie.

Since we are revealing " secrets " , I'll share something that some of you

don't know.

When Kate was 4, she was molested by her biological donor. The state of

Missouri had the charges ready to file against him. After a visit with the

donor's mother behind closed doors, the prosecutor dropped the case. His

secretary was so upset that she sent me a copy of the charges that he

ordered to have destroyed.

I used this copy to fight his visitation with Kate. It ended up with calls

to the Governors in Missouri and Illinois, a multidisiplinary meeting

between the 2 states, Nightline (ABC show) getting involved. I just didn't

shut up until he had his visitation revoked.

Now I realize how God was preparing me to advocate for Karrie.

Sorry to be so longwinded!!!

Sue mom to Kate 13 and Karrie 6 w/ds

[Guest guest]

Jill,

I sure do understand your fear of losing your child. When she was undergoing

her first surgery, I remember being too numb to do anything but sit in the

chair in the hall outside. I didn't even realize that I was crying until a

nurse wiped my face!

Sue

[Guest guest]

I think a trauma brings out feelings you never knew you had

We didn't get the diagnosis until 4 weeks, but I knew right from the start

something was up. The shape of her head struck me as odd. Then the nurses

said they would bring her back in 2 hours but took 4. The pediatrician said

the nurses were " concerned " about the fat pad on the back of her neck, but he

thought the eye shape & placement were due to her being half Asian. He

didn't say what it was the nurses suspected. It was at her 2 week visit I

asked specifically what the doctor had in mind and he said DOwn Syndrome...

but by then I had my suspicions. She was a strong baby, and already smiling

at 2 weeks, so the pediatriacian didn't feel the need to rush into a

daignosis. At my insistance he ordered the bloodwork, but mistakenly

believed that it would only take 2 days. He called back with the results 2

weeks later - just a couple of hours after my parents (who had been visiting

since the birth) had left for a 7 hour flight back home.

It was a very traumatic time. SInce I had suspected from the beginning but

didn't discuss it, I had avoided bonding. I even thought that if something

happened and she died it might be the best thing all around. But 2 weeks

later she spiked a fever. I took her to the pediatrician - who immediately

called the pediatric wing of the hospital to expedite and emergency

admittance. He told me the first thing they would do at the hospital was to

do a lumbar puncture (spinal tap) to rule out menigitis. As I drove her to

the hospital I felt overwhelmed that I definiately did NOT want anything to

happen to her... that she deserved every chance she could get.

Turned out she had a urinary tract infection - easily treated with

antibiotics. Phew!

Later the pediatrician told me that he has a younger brother who was autistic

and and his own experiences as a sib to a child with a disability probably

colored his reluctance to diagnosis. ALso 6 months later there was another

child in the same hospital who was half-Asian - the geneticist diagnosed DS

based on visual observation - and the bloodwork came back negative.

Origianlly we palnned to have only 2 children ( has an older sister)

but it was the pediatrician who encouraged us to have another. It was his

own experience as an older brother of a child with a disability again... he

said that in the long run having a sister that he could discuss his brother

with, and share the responsibility, was incredibly important to him.

- Becky

[Guest guest]

Okay, I'm not a parent who has adopted a baby with DS, but I've been in

contact with a mom who struggled for a long time.

She wanted to put the baby in foster care and eventually release the baby to

adoption. Her husband did not want the baby to go out, but loved his wife and

shose to support her in any decision she made. I chose to support her and let

her talk--no matter how much her discussion at times hurt. I made no attempt

to try to " talk up " having Sheila. In fact I offered no information about

raising Sheila, unless she asked. The more months went by the more questions

she asked. They did place the baby in foster care for a short time (one of a

twins). I think the twins were about 6 months when she placed the one--they

retained visitation rights. It took her a long time to come to terms, but by

the time the twins were 18 months old the baby was back at home fulltime.

For the sake of the new struggling mom and the mom interested in adopting--it

should be done through an agency--IMHO. Lots of care should be extended to

the new mom and perhaps the option of temporary foster care as she makes the

decision, should be made.

nancy

[Guest guest]

Here's my $0.02 worth. I've known moms who've said it took months to

really fall in love with their typical babies, either because of a very

traumatic birth or a colicky baby or some other issue. This mom has had

a real shock and I think it is very possible and likely given time

she'll love here baby.

In my case, the first few days I remember looking at Nicky and fixating

on the shape of his head. It was very flat in the back and he was

cone-headed from the birth canal. There were times I wasn't sure I

could love him unconditionally as much as the other two. But by the

time he was released from NICU at 13 days I did love him. When he

smiled the first time at 2 months, I was totally in love with him and

now at almost 5 months those feelings are so strong.

Anne

[Guest guest]

I know of one online person (an oldie who lurks alot) who chose the adoption

route. He didn't meet with the adoption social worker (or visit the baby) for

10 days. The social worker answered his questions. He asked if his child would

go to an adoptive home once discharged. The social worker told him that she

would have to go into foster care first.

He woke up at that point and said no child of his would go into foster care.

He's been a great father and a great husband (so he says and if he reads this,

I'm sure to get a email from him) - he really appreciates his wife after what

she had to put up with for those 10 days.

I know that for some families, the weaker party will use the DS excuse for a

marriage breaking up. One of the most tender memory of Tim was watching him

curled up on the floor, next to my hospital bed, the night was born.

The hospital had no beds available for him. Come to think about it, I probably

kicked him out of my bed...lol!

[Guest guest]

In a message dated 2/16/03 5:33:59 PM Pacific Standard Time, lisa@...

writes:

> This is why we wanted to have at least 3 kids. The " burden " doesnt t

> seem so bad when you know you have someone else you can rely on, even in

> normal everyday life.......

>

> >

> >

> >. It was his

> >own experience as an older brother of a child with a disability

> >again... he

> >said that in the long run having a sister that he could discuss his

> >brother

> >with, and share the responsibility, was incredibly important to him.

> >

>

> --

> Leis.... Aussie mum to 5 ,Natasha 1 and Jellybean due Oct 03

>

>

It also meant that my oldest never felt like she has to be the " perfect

child " by contrast

[Guest guest]

This is why we wanted to have at least 3 kids. The " burden " doesnt t

seem so bad when you know you have someone else you can rely on, even in

normal everyday life.......

>

>

> . It was his

> own experience as an older brother of a child with a disability

> again... he

> said that in the long run having a sister that he could discuss his

> brother

> with, and share the responsibility, was incredibly important to him.

>

--

Leis.... Aussie mum to 5 ,Natasha 1 and Jellybean due Oct 03

Whenever I'm caught between two evils, I take the one I've never tried.

Mae West (1892 - 1980)