Things we wish people wouldn't say...

[ericadg]

"At least when she's older, she can wear cover-up(makeup)"

So says the over 80 year old woman at Wal-Mart today.

next......

[Corinne]

I am speechless! Wow! Do people not think before they speak?

[becca]

Believe it or not, I actually have had all different kinds of people (strangers, relatives, etc) say this ....

~~~ You just need to spank him more. ~~~

Hello?? You don't spank a child who barely understands the difference between what to do and what not to do ... let alone variances in who can do what! If I spank him, he'll think it's perfectly fine to hit his sisters and others!

And, where is the logic here? His birthmom pumps him with cocaine, dope, alcohol and nicotene, so I am supposed to hit him for that?

Geez. Stupid people. Ugh.

Becca

[becca]

BTW ... maybe I am a freak or have a weird sense of humor, but I just love these threads ... where we make fun of other people's stupid comments. LOL

Becca

[jillgibson]

I always get the, "She'll outgrow it" comment. Actually, her doctor doubts Avery will be one of the lucky ones to outgrow asthma (due to how her's presents). And quite honestly, when I'm just trying to make sure she gets through the next 24 hours, it doesn't give me a whole lot of comfort. It also doesn't me that I can take the attacks she has now any less seriously.

[wuvmyangel93]

I have a couple

the on-call dr. who told me when I took kali-morie in in a panic when she was 2 months old. The apnea machine had gone off numereous times, she didn't look well and had a fever.

He said to me "all babies get better". I looked at him blankly and said NO many babies die. Bundled her up and immediately went to children's she was placed immediately in the NICU with sepsis and unknown respitory infections, diagnosed with asthma shortly after.

I don't know if she would have gotten better had I not taken her in, it was a horrid time.

I too get the she'll outgrow it all the time, when younger I got if you only spanked her more like she understood that.

The most common now is we don't see anything different about her, um sorry you can't "see" autism or bipolar, they don't physically look different.

[momtoWill]

Regarding Amelia, "Well, she looks normal. Why I can hardly tell anything's wrong with her!"

Gosh, she is normal (whatever that means) and she happened to be born with a cleft lip. She's a funny, smart, sweet little girl. Too bad that wasn't the first thing noticed.

[my4boys]

"wow! The kids are going to think its cool that she can drink through her mouth OR her nose" yes, this comment was made to me when Lily had milk pouring from her nose, as a baby.

And this one...."well, since you cant breastfeed, make dh do the work now (feeding)"....I would have given almost anything to be able to have breastfed Lily.


Blessings`
Wendy

[my4boys]

Oh, and here is the kicker...

"well, atleast you cant see her cleft and she isnt deformed".


First of all, IF she DID have a cleft lip, it would have been difficult in other ways, but probably not associated with a syndrome.

Second of all, HOW DARE THEY call a child with ANY kind of birth defect, deformed. That angers me SO much!!!!

People are so clueless and uneducated...with the work they do on cleft lips today, you can barely even tell! The drs are amazinG!!!

Blessings~
Wendy


PS...how many of us have wanted to just reach out and slap someone after one of these comments??? I know that I have!!!

[my4boys]

momtowill said:

Regarding Amelia, "Well, she looks normal. Why I can hardly tell anything's wrong with her!"

Gosh, she is normal (whatever that means) and she happened to be born with a cleft lip. She's a funny, smart, sweet little girl. Too bad that wasn't the first thing noticed.

Lily only has a cleft palate, but I get that same comment, "well, she LOOKS normal" Whatever! She IS normal, she is perfect! And let me just add...Amelia is BEUTIFUL!!! And I have a love for ALL kids with clefts!!! I think they are so special!!!! ;D


Blessings`
wendy

[rachelandtyke]

"Plenty of kids talk late and they don't go to therapy." (I've even gotten this comment after explaining to people that she is 5 months delayed on RECEPTIVE and expressive speech - and explaining what they each are! Our SLP says, sure plenty of kids talk late and are fine, but not if they can't hear us or understand what we are saying!)

Allie responds to something someone has said and then they say, "See, she can hear. She doesn't need a hearing test."

"She can't have a hearing problem, they tested her as a newborn and she passed."

One thing that really frustrated me was when we had so many feeding problems and Allie wasn't gaining weight and sometimes losing due to food allergies, knowing all this, I had a friend constantly saying, "Well my ds didn't gain much his first year and he's fine." Yes but his mom weighs about 100 lbs and his dad is about 5 ft. tall. Completely different circumstance!

I just hate when people minimize what we are dealing with!!!

[sammytkitty]

For Bridget-"I guess a bikini is out of the question now". or "Gosh, I thought the surgeon would have done a better job, her tummy looks awful". (both of these from her great grandparents mind you). I just said 1. "She cannot wear a bikini under my roof anyway" lol, and 2. "I think she looks beautiful, I'm sorry you do not"
For Em-"She will talk when she has something to say". or "Signing with her will teach her to never talk". Obviously they do not realize the importance of communication no matter what form. You try to console a crying two-year old when they can only babble.
Laura
PS-Good thread-some people really just do not think before they open their mouths, or they seriously are oblivious of their stupidity lol.

[gabeandgavinsmommy]

The one I get a lot is "well, he'll get better when he's older." ummmm no, he has cystic fibrosis, it's a fatal genetic disease, he's going to get worse when he gets older. I wish people would at least look up the disease before opening their mouths!

Sammykitty, Bridget and Gabe could go to the beach together and have nice matching scars, oh imagine that, we'd get double the stares, lol. (Gabe had MI, they thought it was NEC orginally, MI is very common in poeple with cystic fibrosis). All I have to say to that is who cares about the scar, it shows that they are little fighters and have been through so much.

[Corinne]

Oh Wow, reading through all these responses brought back memories for me.

One that stood out was my MIL, she insisted I bring Tim to one of those healers. I refused to do. So, she went herself to see if they could "heal" Tim through her!

Another time was my pediatrician, who after many years I had begun to dislike. Anyway, he was no longer in charge of Tim's care, but I was there with David. He asked how Tim was and I filled him in on his latest bout with pneumonia. Very nonchalant, he says, "You do know that that is what will take him" I was kind of shocked. I did know that, but it was said so carelessly. I believe it was after that day that I switched Amanda & David out of there.

[wuvmyangel93]

See, she can hear. She doesn't need a hearing test."

"She can't have a hearing problem, they tested her as a newborn and she passed."

Oh I love those comments NOT

mine gets them alot she hears fine, what's your problem

my problem is she hears too well, severe sensory integration dysfunction and auditory processing

her hearing the lights flickering, or erasers being used make it to where she cannot concentrate and focus on her work

someone clicking a pen will literally set her off behaviorally even if its 2 rooms away its so hard to make the teachers understand

she also has a receptive language disorder