Denial?

[Jessie]

Have you guys ever come across someone that is kind of in denial about their child having Ds? I know we have talked about denial w/behavior issues here before, but I mean outright denial of their child even having Down syndrome?

First, the post on Ebay with the woman's ultrasound picture - maybe the baby doesn't have Ds, but it is a little suspicious to me.

Second, yesterday when we were in for my Ob appointment, there was this woman there with two babies. Me and Brian both immediately saw that the little one had Ds. Brian even tried to strike up conversation with the woman telling her that he has a son with Ds. She said, oh, this one has Beckwith-Weidemann syndrome. The babies were identical twins and the other one was completely normal (how weird is that?). Anyway she said the little one was so small because of this syndrome. Me and Brian just looked at each like wha??? never heard of that condition before.

So . . . when I got home I jumped on line to find out about this syndrome. The pictures of the kids on the website with Beckwith-Weidemann I found look nothing like a Ds child. And, it said that the babies are normally BIGGER than normal, not smaller like this woman's little girl was. Now, obviously, me and Brian are not doctors and we can't go around diagnosing other people's kids, but we would have bet our last dollar this baby has Ds.

Has anyone ever experienced something like that? It was very strange.


J

[kellyds]

I haven't come across anyone else who was in denial. But, when Joshua was born six weeks ago and my husband and I accepted his diagnosis, celebrated his birth, resumed a happy family life and didn't fall to pieces, a lot of people accused US of being in denial. I guess you're expected to MOURN and GRIEVE your child's birth if he isn't "perfect".

[Alice]

First of all, I do not see anything wrong if parents are in denial stage for some reason. That is their own business.
Second, identical twins should have the same syndrome if any.
Third, if it is true and the woman is in denial of DS but accepting the other (B-W) syndrome - it sounds too funny and strange.
I think there was some misunderstanding...

(A little bit about our denial five years ago:
We did not spread the news that our son was born with DS, but if people asked us - we said: "Yes, he has DS".
I do not see anything wrong with that, because after having a shock from the news after his birth - we needed some time to adjust that fact of having child with special needs.)

[kellyds]

Just wanted to say that I hope I didn't offend anyone who DID grieve when they found out their child had DS. There are many ways to deal with such news. I was just surprised that our acceptance was considered . . . I don't know . . . sick or something.

EDIT: I went back and read that ad on eBay. The little boy's karyotype showed that he has Down syndrome, yet the mom says she knows he doesn't really have it. I don't think a karyotype is going to be wrong and, yes, he does look like he has DS. I hope she eventually accepts him as he is. I know I said above that there are many ways to deal with such news, but this lady's complete denial is too sad.

[Kristen]

Denial is a part of the grieving process. I hesitate to say "grieving" because I myself don't feel like I grieved, I was just very, very scared and sad at the thought of what Carter might go through in life. I would wonder why me sometimes, but it was why me, why was I chosen for this, what if there was a catastrophic screw up and I can't do this right? It was not oh woe is me why me. NOT that there is anything wrong with that, but there are SO many aspects and connotations for what goes on, it's hard to even know from what people say what they really feel.

I never denied he had it, really. I did wonder if there was a mess up because he seemed fine to me, but I still brought him to all these doctors and got him evaluated right away for therapy and stuff. His own ped wrote "questionable downs dx at birth" in his chart and the last thing my OB said to me was make sure you are satisfied with the dx. What was THAT supposed to mean? So yes, every now and then I let myself drift into what if land, but I always KNEW he had it if that makes any sense.

As long as the baby isn't being denied care because the parents are in denial over it, it's just part of what some people go through. If they had, say, a heart problem and the parents were not taking them to see about it, that would be another story, KWIM?

[Kristen]

BTW - what pic on ebay?

[momofrussell]

Food for thought on the twin story.... how many of us THOUGHT that Mary Kate and Ashley were IDENTICAL twins? Show of hands? (mine would go up until recently). They are NOT identical twins but look IDENTICAL... so maybe those twins just "appear" to be identical. Then... when I was pregnant with Russell, a friend of mine had 2 girls. Her older daughter was around 9 or 10 at the time and I would have BET THE FARM (and my last dollar LOL) she had DS... and she DID NOT!!! She looked AND acted like she did.. but did not... so looks CAN be deceiving! Trust me!

I would not assume any parent that gave me a DX for their child was in denial for the TRUE DX unless I knew them well. But that is just me. I take it for what it's worth and try to believe them. And understand where they are coming from.

I don't know what pic you all are talking about in regards to the other situation. BUT... maybe the child has Mosiac DS??? Just a thought off the top of my head without knowing the particulars and seeing what you guys are talking about.

And I agree with Kristen . I know I personally have never had "denial" feelings but I would think that even if a family HAD those feelings, if they were caring for their child the way they should, that is all that matters! We all are going to have different feelings about it all.

Now.. about that pic.... is there a link???

A.

[Valerie]

The picture they're talking about is in the thread about the doll with DS. There's a link to e-bay where a woman is trying to sell her US picture.
I can't say I was in complete denial about the DS, but he was not definitely diagnosed until 3 mos when he had his PA banding. The first it was ever brought up was when we discovered he had a heart condition at 6 wks, and then they thought so because of the AV canal defect normally being found in children with DS.
So while not in complete denial, we had from 6 wks until 3 mos old knowing it was a possibility, hoping it wasn't because he was moving along so well in his development, but loving him just the same either way!!

[kellyds]

This is the link to the auction. Appearances can be deceiving, but she says this little guy's karyotype came back showing he has DS.

cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&category=32988&item=7504225822&rd=1

[Jessie]

Ummmm, didn't mean to create a firestorm there! Sorry if I offended any of you by even posting that question about denial. Once again, something I'm probably not sensitive enough to.

The woman that we saw at the doctor's office told us they were identical twins - 18 mos old. And, yes, we could be compeltely off base, like I said, we are not doctors. We were just so shocked because she had so many of the really obvious Ds physical characteristics.

Anyway, you guys are right, I guess as long as they are being taken care of the parents will come around eventually, if that is in fact the case. I really wasn't trying to insinuate otherwise. Those two babies we saw yesterday looked happy, healthy and completely loved by their mom.


J

[momofrussell]

You didn't offend me Jessie. I thought it was a great question/dialog. Even if I have a different view, that doesn't mean I am offended It would take alot to offend me.... LOL

a.

[Becky]

Jessie,

I my self never went threw denial.

One day I was in WalMart with both my boys and Matthew is as bad as me to go up to someone with DS and ask the parent, this time he came to me and said,"Mom there is a girl around my age down the doll asile with ds she said hi to me and her mom is down from her on the same asiel" so I thought ok Ill go down there and let her see Justin, I spoke to the girl and she said hi and hugged Justin, so I went on to her mom and said " Your daughter is so cute and very nice" she said "Thats not my daughter I dont have one" then very fast walked away from me, boy I felt so bad that I had gone up to her so I went down the aisel she had gone to say sorry but just at the time I truned the corner the girl was standing by the lady saying MOM MOM trying to show her a doll, and the mom told the girl hurry just get it and lets go, I had a hard time wondering why she had just told me she wasnt hers but then to see them together and her calling her mom I did see them in the parking lot getting in the same car so I know she had to be her mom.
Not sure why she wouldnt have told me she didnt have a daughter. Im very proud to let anyone know Justin is my son, even though I have been asked if he is my grandson, GRR to funny and I so nope he is all mine.
Becky

[Kristen]

Not offended at all. It's life and unless everyone else got the rule book and I am violating them without my knowledge, a give and take of ideas should not be construed as offnesive in my book!

[Jessie]

Hmmm, maybe that woman in that link does recognize he as Ds (as per the title of the auction), but has a very interesting viewpoint on it. I just re-read it and she does say she is raising money for Trisomy 21 research . . . it's weird what she wrote . . . and hopefully it's no one on this site that may be reading that I just wrote that! LOL

[Kristen]

Oh I think it's weird as it gets. Sometimes I think people purposely put stuff on there trying to get publicity.